tag:blogger.com,1999:blog-51899130518789882002024-02-07T16:46:43.932-08:00Because I am your MOMAmandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.comBlogger23125tag:blogger.com,1999:blog-5189913051878988200.post-26791517757039750782015-07-23T17:07:00.000-07:002015-07-23T17:07:06.996-07:00in my own little corner.We're still here at Yale. It's been over a year since we've been inpatient - they've painted, gotten cute dressers and lamps and updated their menu. They've also become better versed with epilepsy monitoring and the room has a fridge. Wi-Fi is easy to access as are the plugs. We are in a corner room with a big window looking over the pretty parts of the city with plenty of sunshine trickling in.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7Vba_Y3LPkZkHJZ7pbNcrS0MbceNHBGO4h-97SWhCzD6H3zQSPcnc3ABjDkEB4qohJhYDQyKy7Z1SSHp_bG5Dww087dqr3K9q-h_9IVuejiG0RfYf7hZlQNcE5uU7qQ8DUj6zgyddmXk/s1600/IMG_5952.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7Vba_Y3LPkZkHJZ7pbNcrS0MbceNHBGO4h-97SWhCzD6H3zQSPcnc3ABjDkEB4qohJhYDQyKy7Z1SSHp_bG5Dww087dqr3K9q-h_9IVuejiG0RfYf7hZlQNcE5uU7qQ8DUj6zgyddmXk/s320/IMG_5952.JPG" width="320" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4M6woSh36DZWJNo1FnpJrc-ojZR0BZbJRamaOamXRZfB7cusq8F6wgOA2FRjRNnWD1lt5pft0D9ZLi8Qe96kB327ZUKvdqWlhUwJKyx2RjxJOdBLjNbswdlEJdj8ettxU3TXsK5uY9XU/s1600/IMG_5951.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4M6woSh36DZWJNo1FnpJrc-ojZR0BZbJRamaOamXRZfB7cusq8F6wgOA2FRjRNnWD1lt5pft0D9ZLi8Qe96kB327ZUKvdqWlhUwJKyx2RjxJOdBLjNbswdlEJdj8ettxU3TXsK5uY9XU/s320/IMG_5951.JPG" width="320" /></a>EEG leads went on this morning. They just downloaded info and then went live with her reading - so I really don't know when I will know anything from that. It's playing live on the screen in our room, but I have no idea how to even decipher it. It's a lot of squiggly lines and sometimes they are bad and sometimes they are good - and I have no idea. Molly, however, enjoys seeing herself on video and then "chewing' or scrunching her face to make the black lines jump at will.<br />
<br />
<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj06G2N-ZWBJf6LGNS3mDw5IQA8mNPH5snejWZuY6bdYZtbfmlhpjGJ_0mz5uSGKkw-kqJoc3I1FcSAyqVlGVtvjGsk3GiEgt6etzNmVPi9J8cicLhEQ9EiaGdDl6lsqL6DbDpbiHdAUtw/s1600/IMG_5945.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj06G2N-ZWBJf6LGNS3mDw5IQA8mNPH5snejWZuY6bdYZtbfmlhpjGJ_0mz5uSGKkw-kqJoc3I1FcSAyqVlGVtvjGsk3GiEgt6etzNmVPi9J8cicLhEQ9EiaGdDl6lsqL6DbDpbiHdAUtw/s320/IMG_5945.JPG" width="240" /></a>For the first time ever, Chris was able to bring both girls up for a visit. They stayed for nearly three hours. The girls treated Molly like a princess and Mommy like a trampoline. Kennedy asked Molly how she was and then gingerly climbed up in bed with her to play some Wii. The whole family was entertained by the clowns who came to visit and blow bubbles and sing songs about bodily gasses. Zoey and I went for walks to the "mountain" or fountain and we purchased treats at the gift shop. Kennedy and I took a walk to the healing garden to sit and chat. She had very important things to discuss with me, she said. Turns out, she's just conflicted about which animal to get for her reward from Build-A-Bear. We were supposed to go tomorrow. A prize for her exceptional behavior while Molly was at summer school and she was tasked with helping Mommy with Zoey. Of course, no visit is complete without tears. I could see poor Kennedy welling up even before it was time to leave. She just wanted us all home. Then she went to jump really hard into my arms and missed, connecting her head with my chin. Thankfully our nurse came to the rescue with a personally stickered ice pack!<br />
<br />
While the family was here Molly had neuro rounds with a large team (Kennedy couldn't believe they were all for Molly). And she had to give more blood. No real answers, but good news - she didn't overdose on alcohol or any controlled substances she shouldn't be into.<br />
<br />
For my pharmy friends - there's a good chance in addition to whatever puts her in these slumps, that she is super duper sensitive to her Depakote. She's been on it since she was 4 with very little fluctuation of doses. She takes it 3 times a day. Very low dose - 125mg/125mg/250mg. She 4'10" (147cm) and weighs about 80lbs (36.5k). Her level at 8:15pm (after getting her night dose at 5:45pm - so peak) was 109, apparently her trough this morning around 9am, before getting the morning dose was well below 50. I don't have exact numbers - but she's apparently metabolizing this drug in a rather weird way - considering every level we've done recently, trough or peak, has been below or barely above therapeutic. We added the extra 125mg to the evening dose in May to try to control mood swings (not seizures). It's helped as we don't see the swing - but we do see the mood.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh8xuQMGEeQNG5IBE_JCvLxClrsoiGTS7c9NGoueoeNIte1AB4sLyCBCKtPYXNtLeA1KYTuFVHRHMnK17PW3I36HAiClYBeqqzYMGYR8Wu4jXyZSUxGBuB_SlbQpNc9wnWvZClvEyMu8k/s1600/IMG_5939.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh8xuQMGEeQNG5IBE_JCvLxClrsoiGTS7c9NGoueoeNIte1AB4sLyCBCKtPYXNtLeA1KYTuFVHRHMnK17PW3I36HAiClYBeqqzYMGYR8Wu4jXyZSUxGBuB_SlbQpNc9wnWvZClvEyMu8k/s320/IMG_5939.JPG" width="240" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis1kojAymNsTYNb0D2vuqzo75xQ0pHoh0VreLhE2N0YZjwoVvPEhTginjZQC9ETEpsxWeXKzlTg1NiD0kudoRBpbPosMuKdp0-EBCU-iaDdT0GlOsG823Srf0oNCd9AidIhiHd0hf3VSQ/s1600/IMG_5953.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis1kojAymNsTYNb0D2vuqzo75xQ0pHoh0VreLhE2N0YZjwoVvPEhTginjZQC9ETEpsxWeXKzlTg1NiD0kudoRBpbPosMuKdp0-EBCU-iaDdT0GlOsG823Srf0oNCd9AidIhiHd0hf3VSQ/s320/IMG_5953.JPG" width="240" /></a>Anyway - here we are. In a corner where we've been before (although never in this cute room). You are left choosing between the kids, choosing what you think is right for her treatment, choosing to bring her in. The choices you make don't always have a right or wrong answer but every choice seems to have a consequence. Yes, we knew Molly had seizures and needs when we decided to have Kennedy. Yes we knew this even more significantly when we decided to have Zoey. Those decisions were not made lightly. I truly know that whatever guilt I feel about not being there to tuck them in and having to be with Molly for these medical adventures, that Kennedy and Zoey are growing up knowing the value of each person. Kennedy knows Molly cannot physically and sometimes mentally complete the same tasks she can - but she knows that doesn't make Molly any less valuable a person or a member of our family. Zoey knows that her big sister may scream, she may growl, she may shove - but she knows how to look her in the eye, share her love and give her a huge hug.<br />
<br />
We are always learning for the girls and from the girls. We are human and we make mistakes - a lot of them. But as I sit introspectively in my little corner of this little room, asking Molly for the 400th time if she's okay - I'm ridiculously grateful and as worried as I feel, I'm strangely at peace. More on that at a time when I've slept more than 3 hours in the past 36!<br />
<br />
But, for right now, she's doing okay and she very happily ordered her meals and played minion rush and watched Scooby Doo on repeat! And we were able to FaceTime some goodnights to the sillies at home. Not too bad a day!<br />
<br />
Hugs<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVzZh-wFCqCxy5zrWeXFdKGmf_2O6FMtEYeeoVgP5n3ettU8jCqiOCi7aDCi89MbyED4uGK063LZx9tdIxr6k8Skurqk1r_C084TWN4DJIK5DEOVwLxW2yAHM2GuZqTY0IOlqAV-KGUhs/s1600/IMG_5957.PNG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVzZh-wFCqCxy5zrWeXFdKGmf_2O6FMtEYeeoVgP5n3ettU8jCqiOCi7aDCi89MbyED4uGK063LZx9tdIxr6k8Skurqk1r_C084TWN4DJIK5DEOVwLxW2yAHM2GuZqTY0IOlqAV-KGUhs/s200/IMG_5957.PNG" width="112" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVL6cjFoAe8ztZ8Lv0s0yUhsdfAF3mLZ-d7EmJz6chsMi2tgnUtkAf0wS2e60oKCe0qblzFg6eDqkLPO9n9BbRdLto3_KfxLrfTdxbTpw2F1SetawgLg9vJFwg_I2JFfDYpCYFPgWu0gk/s1600/IMG_5956.PNG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVL6cjFoAe8ztZ8Lv0s0yUhsdfAF3mLZ-d7EmJz6chsMi2tgnUtkAf0wS2e60oKCe0qblzFg6eDqkLPO9n9BbRdLto3_KfxLrfTdxbTpw2F1SetawgLg9vJFwg_I2JFfDYpCYFPgWu0gk/s200/IMG_5956.PNG" width="112" /></a><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOU6eb9mM41Oc23pSdysUl42gVDd_UjEo5oR9_LRly1UD1-aEQz0uq2USqCsDORM1smh_IuRxYlzsqnjrMAiRvzGkDVz4y4XvbU8Ix9Ro7AaiR6msfjpvDanu3-EENgmiHCvtqw16Bmq0/s1600/IMG_5954.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="192" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOU6eb9mM41Oc23pSdysUl42gVDd_UjEo5oR9_LRly1UD1-aEQz0uq2USqCsDORM1smh_IuRxYlzsqnjrMAiRvzGkDVz4y4XvbU8Ix9Ro7AaiR6msfjpvDanu3-EENgmiHCvtqw16Bmq0/s320/IMG_5954.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Special treat for dinner with Daddy!!</td></tr>
</tbody></table>
<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<br />
Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com0tag:blogger.com,1999:blog-5189913051878988200.post-21143851400171153062015-07-22T22:14:00.001-07:002015-07-22T22:14:10.887-07:00and sometimes we have nights like theseMolly has been remarkably seizure free for a long time now. I'm really not sure of the exact amount of time, but it's been at least three years or more. This is important to know for the set-up of events that have unfolded.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdBzFPaXK6wiZoMrngorvCC0hkmtYORFQPLm7CGrFo2bYorvkk6PcSwcKhiIuZ0N_h06DSr_pv94azT73W8yf9iultb9jkALdETg7RvmJU4oRxP1uigAXnfbz8ltYYOxZ-_-gMXeTCxA4/s1600/IMG_5920.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdBzFPaXK6wiZoMrngorvCC0hkmtYORFQPLm7CGrFo2bYorvkk6PcSwcKhiIuZ0N_h06DSr_pv94azT73W8yf9iultb9jkALdETg7RvmJU4oRxP1uigAXnfbz8ltYYOxZ-_-gMXeTCxA4/s1600/IMG_5920.JPG" /></a></div>
Molly still takes anti-epileptic drugs. Molly also has autism, temperature regulation issues, gait abnormalities and more.<br />
<br />
The summer slump began a few weeks back with a nasty eye rash no one could actually identify. Every summer (and fall, maybe spring too) we go through this with Molly. She gets fatigued easily, her color drains, she retreats into herself more and more, and she some times regresses behaviorally. The past month has certainly followed these disturbing but not unfamiliar patterns, however the past 4-5 days have been worse then we have ever seen. Her behaviors rival that of a very tempermental 3 year old (and I have one as a basis for comparison). Her fatigue leaves her barely able to climb the stairs after summer school. She's wobbly and she is testy. Fun right? We assumed maybe puberty was paying us a visit until yesterday morning. I looked at Molly, who had left things strewn about, who didn't remember key elements of the previous day. I asked her to please turn off the bathroom light. She stared right through me. I asked her again, gently nudging her. She turned and walked somewhere, and I reminded her again to please turn off the bathroom light. She finally walked into the bathroom. I waited for her to simply switch off the light. Nothing. I walked in to find her staring in the mirror holding a wash cloth. I asked her to tell me what I had asked her to do. She looked at me and said "Um, take my medicine" ( I was holding her inhaler). I said no, turn off the light, but go ahead and wash your face. She came back out and the light remained on. Finally, I asked again and she turned it off.<br />
<br />
Throughout the day and today I would notice her missing pieces. She'd forget routine tasks she'd done for years. She'd insist we did something last night when it had truly been days before. When you've been down the road we have, it is very hard not to assume seizures are rearing their head again. Or if it's not seizures - WHAT THE HECK????<br />
<br />
So, I called Boston multiple times, I emailed and went back and forth. When Chris got home tonight I was all packed and ready to move. Molly and I came to the Yale ER. She was triaged and admitted straight back. We got urine, blood and an IV. She's on pulseox. She had a lovely full eye roll/ stare as she was getting her IV. And now, we wait - for what, I have no idea. We've been here before. Maybe we'll get upstairs and get hooked up for EEG - maybe not. It's truly anybody's guess.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-eJVG1PZF3PA26kIBN1aVuY4BZidvYV71gLTcsxHsYsrSJ5tL-qVDlM6HK4G2-byQg58YEuYxDPC88OrRa3VoJIv1F8bAtg9jJ8Md3cIl4f4WVfYeSK_TUAnfMEIp-XQSW0uLLa_dTSI/s1600/IMG_5889.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-eJVG1PZF3PA26kIBN1aVuY4BZidvYV71gLTcsxHsYsrSJ5tL-qVDlM6HK4G2-byQg58YEuYxDPC88OrRa3VoJIv1F8bAtg9jJ8Md3cIl4f4WVfYeSK_TUAnfMEIp-XQSW0uLLa_dTSI/s200/IMG_5889.JPG" width="200" /></a><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhW6N59lb6KBPrt24nIlZrS8Z-JS-eTEqR4Z7FDu5YoM9Qii5YMyV3xuid8R6n_AHI4TnDsAmXwr8rqZdN73e72GRbsQB-GajIfp9L08t4GLLP5CIpguBFSGISopPV6xTVu_7PBT-Q4LPw/s1600/IMG_5925.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhW6N59lb6KBPrt24nIlZrS8Z-JS-eTEqR4Z7FDu5YoM9Qii5YMyV3xuid8R6n_AHI4TnDsAmXwr8rqZdN73e72GRbsQB-GajIfp9L08t4GLLP5CIpguBFSGISopPV6xTVu_7PBT-Q4LPw/s320/IMG_5925.JPG" width="240" /></a>Tonight I just wish for sleep. I'm thankful I grabbed my computer for entertainment and connection, that she is coherent and happy enough to play with her iPod and scroll through YouTube Kids videos. We ate dinner, we're good - this isn't our first rodeo. Tomorrow I will deal with the two children at home who understand why Mommy has to go with Molly, but don't really understand why Mommy cannot be in 2 places at once. They understand Molly needs me, but they don't truly comprehend the inequities of it all because in reality they need me too.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQlQ2HYgOj45Z4dLSOVLMlAvWggVllXWnY6fdkXpXdW0q6dKCQ3OPMCJxYmPpzbbbd_06eemcO8-O_IdDlH_ayLjlH4Ybdz_N2lQUyKfsJZOE8nOa3jEDqLZLI0-cW6RotTjXfihBzqB8/s1600/FullSizeRender.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQlQ2HYgOj45Z4dLSOVLMlAvWggVllXWnY6fdkXpXdW0q6dKCQ3OPMCJxYmPpzbbbd_06eemcO8-O_IdDlH_ayLjlH4Ybdz_N2lQUyKfsJZOE8nOa3jEDqLZLI0-cW6RotTjXfihBzqB8/s320/FullSizeRender.jpg" width="240" /></a><br />
Today was the first day in a very long time where I felt the tears welling up behind my eyes. This stuff doesn't really get to me any more. Sure, we worry and sure we wonder, but rarely do I get to the point of tears. But the tears were ready today. It was overwhelming perhaps. Molly tried to settle on the couch and get some comfort from my touch, which she really needed, but she couldn't stomp trembling and jerking about. Zoey, who refuses to nap but was 3 year old tired at 4pm - fought for a spot on my lap and then passed out as she does, my beautiful weighted blanket. And then Kennedy sadly looked on knowing there was no spot for her at that moment but she wanted pictures for her scrap book and I tried to appease by air printing from my phone (thank you technology) And I wanted to be there for each of them and I knew dinner still needed to be made, meds given, etc and I was emailing Molly's doctors to develop a plan and it was all just TOO MUCH! I kept the tears in so I didn't alarm my already super sensitive kids, but man - what a day.<br />
<br />
And so here I sit, waiting to figure out the next steps. Knowing that what happens here tonight, very much affects what happens at home. Being a special needs parent comes with a lot of extra luggage and not quite enough room to store it all.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk-YdyxgLUUouH7zy5kZJQQH3QduqrqaXQNUFlSNAeDcvfJjil4SMOhV2BFj3-HNvGWG5Udb2GLI9clNvM062Q6B7L-Mb9ZtMhPEhNTnzya4CxgsET0LAHUN2dz7fosBj67vJJyvEdi94/s1600/IMG_5931.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk-YdyxgLUUouH7zy5kZJQQH3QduqrqaXQNUFlSNAeDcvfJjil4SMOhV2BFj3-HNvGWG5Udb2GLI9clNvM062Q6B7L-Mb9ZtMhPEhNTnzya4CxgsET0LAHUN2dz7fosBj67vJJyvEdi94/s200/IMG_5931.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgc7awvHAlUrequtcySBlCUykeDlDKyzhIaSMHgI6jK06pMO29XD_RWSr5bwNubp3vyLHbH1GPF7eZrTRPDOMq1xvYkMwFXkGM2yzi4f5Gvr0payehnalqZ_P0BizcfZ345W1R-M1NUt44/s1600/IMG_5930.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgc7awvHAlUrequtcySBlCUykeDlDKyzhIaSMHgI6jK06pMO29XD_RWSr5bwNubp3vyLHbH1GPF7eZrTRPDOMq1xvYkMwFXkGM2yzi4f5Gvr0payehnalqZ_P0BizcfZ345W1R-M1NUt44/s200/IMG_5930.JPG" width="150" /></a></div>
I'll keep you all posted, but I wonder if we'll know much of anything until Whole Exome Sequencing results come back at the beginning of September.<br />
<br />
Hugs <3<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVuFtduCFLZq9D80aVhCgGKFzOc-8pw-xhr4B9L0Auy6ienVTSJ2RzNKbUzt54S7sBRlB_1en2Ct-VjbLlKkee3tedCnOZZxIbNrX4xAP1o3wW5ww6cB3IvAIn1PsFRmVl48PG13KurhQ/s1600/IMG_5935.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVuFtduCFLZq9D80aVhCgGKFzOc-8pw-xhr4B9L0Auy6ienVTSJ2RzNKbUzt54S7sBRlB_1en2Ct-VjbLlKkee3tedCnOZZxIbNrX4xAP1o3wW5ww6cB3IvAIn1PsFRmVl48PG13KurhQ/s320/IMG_5935.JPG" width="240" /></a></div>
UPDATE - Because we have such an incredible team - she is being admitted and we will have a Video EEG tomorrow. Levels were off on some things so we'll most likely have blood redrawn tomorrow as well. It's 12:10am and she is still awake and overstimulated, and way too excited to be going upstairs. It's been a while and she likes ordering breakfast - or something like that! If you have a chance to think of her and send a quick prayer for answers, we'd really appreciate it!<br />
<br />
And, can someone tell her that now it's 1:10am and even though her room is adorable, she should probably go to sleep!Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com0tag:blogger.com,1999:blog-5189913051878988200.post-59113943118332618162015-07-03T18:11:00.001-07:002015-07-03T18:11:37.860-07:00Holidays the Renz way<br />
<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5LOaQVKCO6Wj956Gw2oiG9a6Rfbv2RofLmnFX9CtbwtlVoMq7F1ZIhhZ-jTG0PgIWw9eivQahRqbvgdsfSWcnWODgwLqp-b-x0rA6JPvVqS5D16rP5-nvEtQLJk3pWxaOoBU9EZjMr8I/s1600/IMG_5621.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5LOaQVKCO6Wj956Gw2oiG9a6Rfbv2RofLmnFX9CtbwtlVoMq7F1ZIhhZ-jTG0PgIWw9eivQahRqbvgdsfSWcnWODgwLqp-b-x0rA6JPvVqS5D16rP5-nvEtQLJk3pWxaOoBU9EZjMr8I/s320/IMG_5621.JPG" width="320" /></a>I'm still having trouble remembering today isn't Saturday. We were blessed with Chris having the day off and we took advantage. The two bigger girls and I met up with Auntie Jamie to get pedicures. It was a wonderful time, something I always wanted to do with the girls - and my feet were needing attention as well! Big shout out to Uncle Tubz for the birthday gift card! Molly was very jittery, but did manage to sit still and was smiling and Kennedy was in her glory.<br />
<br />
Afterwards the girls wanted Peach Wave (a make your own frozen yogurt or sorbet type place) and then Subway because they had "Inside Out" bags. We also got to see Uncle Matt climb a ladder and then buy some gifts at Justice and the Paper Store.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHysBhpKMDFhjcr4PjFINwdLBoLZTK9vKyJI1pSXaZO8MMINR9b2nh1J6_7NWZ7eAhYIZFxbJ7AxvroXslEX0IIa8LD7J3gK546_ST3jMKOABzXaqQXvMYXZ9FDiDtNqx8yKTCYRR6-Ns/s1600/IMG_5620.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHysBhpKMDFhjcr4PjFINwdLBoLZTK9vKyJI1pSXaZO8MMINR9b2nh1J6_7NWZ7eAhYIZFxbJ7AxvroXslEX0IIa8LD7J3gK546_ST3jMKOABzXaqQXvMYXZ9FDiDtNqx8yKTCYRR6-Ns/s200/IMG_5620.JPG" width="200" /></a>Zoey spent the morning with Daddy playing at the playground and then running some errands. She got a lot of attention, and so that was good. I tried to split myself between two girls who needed hugs, hand holds and smiles. I think we made memories today.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtqZHkNcRwUkR_9EhyphenhyphentP6jZ2ATejWp0dxQW1d3hjNAg6NkByV0gVUMhnd-e0P8DUiPPtpg_geSxFbPBk9gO6gjJ83Mgu7A8ZL89ikpA6GFSAgIOzHujc_lk4Bk62OQ5IesQtLo0sIofHw/s1600/IMG_5623.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtqZHkNcRwUkR_9EhyphenhyphentP6jZ2ATejWp0dxQW1d3hjNAg6NkByV0gVUMhnd-e0P8DUiPPtpg_geSxFbPBk9gO6gjJ83Mgu7A8ZL89ikpA6GFSAgIOzHujc_lk4Bk62OQ5IesQtLo0sIofHw/s200/IMG_5623.JPG" width="150" /></a>Once home, it was evident the day had taken its toll on Molly. She was very much inside her own head. Talking her scripts and shutting the door to the rest of us. She sat at dinner with us, she watched her iPod for her allotted time frame at the same time as the rest of us, and then she went away from our presence. She retreated to her bedroom and crafted a fairy tale with Barbies and Monster High Dolls.<br />
<br />
Our Holiday weekend looks so different from most other families, and thankfully I've gotten to the point where this doesn't really bother me. We made our own fun and will continue to do so. Our fun is as far away from fireworks and crowds as possible - but it's time together and it's memories they will hopefully carry with them for a lifetime.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge2piZVw5-DUlf8TVEhKOqby5DNBkjw5XRs6wf9RbHvxtAORMgk3X6lDeAO-QoZW_Vvein_Zm4MFa_rKbW6OknHsDanzXY3whXzASralhvg-1nQsEkeFKT51IYKztDfPYK0Xhqg3uMtdA/s1600/IMG_5631.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEge2piZVw5-DUlf8TVEhKOqby5DNBkjw5XRs6wf9RbHvxtAORMgk3X6lDeAO-QoZW_Vvein_Zm4MFa_rKbW6OknHsDanzXY3whXzASralhvg-1nQsEkeFKT51IYKztDfPYK0Xhqg3uMtdA/s320/IMG_5631.JPG" width="320" /></a></div>
Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com0tag:blogger.com,1999:blog-5189913051878988200.post-86155465256434811162015-07-01T17:30:00.000-07:002015-07-01T17:30:00.181-07:00Let's do the Zoo!<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9HqD-OwqoCEUDYYttIC6DQse0FYZmVNlGYZjgTsE2NGlCNbyEGP0xCHRRiD2SttcV17htGMcQmjd_uKkOOim2LQh9BvzY3Ac6PlyA5T8X6iYYWwk2U2NhjZYXOTmY8WejycMCyiNRggQ/s1600/IMG_5585.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9HqD-OwqoCEUDYYttIC6DQse0FYZmVNlGYZjgTsE2NGlCNbyEGP0xCHRRiD2SttcV17htGMcQmjd_uKkOOim2LQh9BvzY3Ac6PlyA5T8X6iYYWwk2U2NhjZYXOTmY8WejycMCyiNRggQ/s200/IMG_5585.JPG" width="200" /></a> The girls have been waking every day since summer vacation officially began by asking: "What are we going to do today?". Most days my answer is something along the lines of grocery shopping or playing in the yard. However, Tuesday dawned bright, dry and beautiful. It was a top ten weather day, so I summoned up my courage, packed up our bag, our meds, and the chair and told the girls we were going to the zoo.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUGUsEjOAzSbYHBJib9aJU2L_dlACW74jAPSiMwcjeK4e7Rjrs1EH8BFLiHMepWgeazh5-_CAnC_JX2KI9ciRZeZY1fWYUMgRKXHVJMDMALGZ7XWDYfoN0u0-2Bq8hfkqCKcfjmM-vfvk/s1600/IMG_5587.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUGUsEjOAzSbYHBJib9aJU2L_dlACW74jAPSiMwcjeK4e7Rjrs1EH8BFLiHMepWgeazh5-_CAnC_JX2KI9ciRZeZY1fWYUMgRKXHVJMDMALGZ7XWDYfoN0u0-2Bq8hfkqCKcfjmM-vfvk/s200/IMG_5587.JPG" width="200" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwPjCdpnv5KixEJJuM1kKBXkNWJ1XwjUKKUCW6ZSqOPmbL_t4sVWXCCvJ9GTTA-qOOVpJ_6QmPPlyX2-TN5Wc1KHB-HPTyKY3tdo49MtJCVIfwaLUKItKNaP05r52meqjSRY2Y8gWeYe0/s1600/IMG_5589.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwPjCdpnv5KixEJJuM1kKBXkNWJ1XwjUKKUCW6ZSqOPmbL_t4sVWXCCvJ9GTTA-qOOVpJ_6QmPPlyX2-TN5Wc1KHB-HPTyKY3tdo49MtJCVIfwaLUKItKNaP05r52meqjSRY2Y8gWeYe0/s200/IMG_5589.JPG" width="200" /></a>I was nervous and this surprised me. I take all three of them a lot of places on my own, but haven't really done much in the past few weeks. Molly has been pretty weak and uncoordinated as of late and well, Zoey has been so fiercely independent - she insists on walking everywhere and additionally, she's newly wearing underpants. In my overzealous efforts to keep them safe, I pinned my business card inside Keddy and Zoey's skirts and instructed Kennedy on what to do if she should lose me, while telling her she better not lose me and she was in charge of holding her little sister's hand at all times! And with that, we loaded into the van.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuSCnWIhWAMSRBmoflMxcPGBXu9OgFPWFmDcnCcY45pCdcGLg_h-CufWMwurLg-mUoUtNM56jmSrdc20KQ_e7STpXKwoN1WGMgskoIf36_RiudAapfzMX3vJgd3HDiTDimijpbWTiCKQM/s1600/IMG_5573.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuSCnWIhWAMSRBmoflMxcPGBXu9OgFPWFmDcnCcY45pCdcGLg_h-CufWMwurLg-mUoUtNM56jmSrdc20KQ_e7STpXKwoN1WGMgskoIf36_RiudAapfzMX3vJgd3HDiTDimijpbWTiCKQM/s200/IMG_5573.JPG" width="200" /></a><br />
We headed to the <a href="http://www.beardsleyzoo.org/" target="_blank">Beardsley Zoo</a> right for opening, arriving shortly after 9am. Thankfully, we have a zoo membership that was a birthday gift for Zoey from my parents and an absolutely perfect one as we definitely don't need more stuff in our exploding house. I knew as we pulled in, I'd made the right choice. The girls were being patient, they were listening and best of all - they were smiling. I unloaded Molly's chair, and Kennedy dutifully grabbed hold of Zoey and off we went.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZbogezSEKqNCJhHemTRWU7MMqjbhDgM1AdrtOpuvweZgkS45ODZswAzZkTJN0ANXhmT8zypTpESaVEPF8cwSK6eLI_jahqaZhtDd8XSiDBIx0FTW58VztL-7qSI-GEkVGF_4pn-wqHSo/s1600/IMG_5588.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZbogezSEKqNCJhHemTRWU7MMqjbhDgM1AdrtOpuvweZgkS45ODZswAzZkTJN0ANXhmT8zypTpESaVEPF8cwSK6eLI_jahqaZhtDd8XSiDBIx0FTW58VztL-7qSI-GEkVGF_4pn-wqHSo/s200/IMG_5588.JPG" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVmHcCoTRmwhlaE8idhawo2HSmbwE0rDdn-5BPJ-CYmAFZQ6T02-xPC-3eaavRWFpmzbEvCL8H57JtfHstuR78sNKd_tHEWm47IvI82Gw_qo-xnISoINuhDvE8BuIc2JO4VKxzUWznWcM/s1600/IMG_5566.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVmHcCoTRmwhlaE8idhawo2HSmbwE0rDdn-5BPJ-CYmAFZQ6T02-xPC-3eaavRWFpmzbEvCL8H57JtfHstuR78sNKd_tHEWm47IvI82Gw_qo-xnISoINuhDvE8BuIc2JO4VKxzUWznWcM/s200/IMG_5566.JPG" width="200" /></a>We saw many different animals - favorites of the day was the rooster and the Prairie Dogs - or at least their tunnel! The zoo does have a beautiful carousel - but I had prepared the girls ahead of time, telling them that I just didn't think I could handle all three of them by myself on the ride. Well, as we took a quick bathroom break, I complimented them on how good they were being and explained to them, if they could be patient - we would ride the beloved carousel. I lucked out - there was only one other group there, so we were able to slowly board the ride and choose our vessels. It had to be one where I could stand between Molly and Zoey and hold on to both of them for different reasons and still see my middle cowgirl in all her <br />
beauty.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNwdT5Ne4SgZ8M3zXKGbMm_G5aAQoShDneSxGEssteWzLd1vgnPbC0GT6fGHV8DY8GKpLFl3jzvVzKrbPXnx7U09TuZQLKVQ4jMzP0CsczDtTxKYbiBvEiGLzyRWRifaNto92Swn5szKA/s1600/IMG_5577.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNwdT5Ne4SgZ8M3zXKGbMm_G5aAQoShDneSxGEssteWzLd1vgnPbC0GT6fGHV8DY8GKpLFl3jzvVzKrbPXnx7U09TuZQLKVQ4jMzP0CsczDtTxKYbiBvEiGLzyRWRifaNto92Swn5szKA/s200/IMG_5577.JPG" width="200" /></a><br />
We then ventured to the small playground so they could do some climbing and by then I could tell Molly was not going to last much longer. It was getting hot, and she was getting wobbly. Kennedy seemed to understand and the girls were delighted with a quick stop in the really affordably priced gift shop.<br />
<br />
I should have stopped there - it was a picture perfect outing for us. But, then we went to Target. I can't really complain as we made it out in one piece with just about everything on my list. All I can say is - Thank GOD there is a Starbucks in Target! I'm also, shamefully grateful that Happy Meals have reasonable portions and a reasonable price tag. I know they aren't the healthiest - but man are they convenient every now and then!<br />
<br />
I might get this summer thing down, just in time for it to all change when Molly goes to summer school on Monday. Remind me, is it me or her that craves routine???<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiab6wREBQcgm6mzi3M7bYNJwioDG83m-epUFwHIJ7Rw-h0_ijyTSaG-EwrsBDJYMf799jWDweq4__vc4-k41NZbEGWsp6kTEpFh2kLruJPKtIUFpVLvSOZ5WO6ze16gM0XMbyBh4hzF9Y/s1600/IMG_5560.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiab6wREBQcgm6mzi3M7bYNJwioDG83m-epUFwHIJ7Rw-h0_ijyTSaG-EwrsBDJYMf799jWDweq4__vc4-k41NZbEGWsp6kTEpFh2kLruJPKtIUFpVLvSOZ5WO6ze16gM0XMbyBh4hzF9Y/s320/IMG_5560.JPG" width="320" /></a></div>
<br />
<br />
<br />
<br />Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com0Connecticut's Beardsley Zoo, 1875 Noble Avenue, Bridgeport, CT 06610, USA41.2088616 -73.18387969999997715.686827099999999 -114.49247369999998 66.7308961 -31.875285699999978tag:blogger.com,1999:blog-5189913051878988200.post-77669845684346013292015-06-29T18:26:00.002-07:002015-06-29T18:26:52.046-07:00The Day That Wasn'tToday should have been a fabulous day. The sun was shining, the temperature was pretty perfect and we had nowhere we had to be and nothing we had to do.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZmrAUw6n4qIHGzW0l98m9T0IORucbGw9TkyyuM3uJ8FSmn0umxV6kCZxf2uJpy98FlAW8ei3OLBmQfkHVhQe9edzuegG8L6hDI_HxUFpeg-0uLzEhhlKdNW7zSGwlcCVyBuWZyVE7C6A/s1600/image1+%25282%2529.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZmrAUw6n4qIHGzW0l98m9T0IORucbGw9TkyyuM3uJ8FSmn0umxV6kCZxf2uJpy98FlAW8ei3OLBmQfkHVhQe9edzuegG8L6hDI_HxUFpeg-0uLzEhhlKdNW7zSGwlcCVyBuWZyVE7C6A/s320/image1+%25282%2529.JPG" width="240" /></a></div>
Perhaps that's why days like today hurt so much. They literally bring tears you didn't know you had. When your little girl sits on the steps with tears rolling down her face saying "I really want to be alone, but I don't like how quiet it is when I'm alone". When she just wants to lie on the couch or walk in patterns around the house telling stories in her head; what do you do? You can't stop her, you can't change her course - you have no idea why any of this happens. You call doctors because of strange rashes, you try to figure out why she's so tired all the time, why she's falling, why she feels "not herself".<br />
<br />
You foolishly expect answers, but once again, there are no answers to be had. And this mystery haunts your sleep, your days, your thoughts. You have to think of ever "what if" before you can plan anything. You feel helpless and sad and then the guilt settles in. You have three children after all, you knowingly brought them into this world to be a part of this craziness. While you worry about your oldest, you can't forget about the needs of your other two - not that they would let you for one second.<br />
<br />
And so this glorious day becomes a precarious balancing act. You are a short order cook, a nurse, a medicator, a comforter. You pull down underpants 100 times, you do laundry and dishes, clean up spills and step on countless legos while your toes are trampled. You thankfully remembered your anxiety meds and are grateful for the leftover eggplant you managed to eat for lunch while playing hide and seek with your youngest. You organized all the bills - house bills, medical bills (they never stop), and the budget that never seems big enough. Oh and you got in a few hours of work as well. You dreamed of going for a walk, but somehow knew that it was not a good idea. And somehow, as you tucked your youngest into bed for the tenth time, you find yourself thinking that maybe tomorrow we'll all go to the zoo or at least to Target!Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com0tag:blogger.com,1999:blog-5189913051878988200.post-71358251443591002492014-01-10T11:52:00.001-08:002014-01-10T11:52:23.114-08:00"Why don't you just give up?"<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtUTcuJjvB9fQ7n2ZWyBX4COmMpqQdYJNHV1zHbKPYVHEwx5bcaVycVB9wThQ99vI_-G3HOgioiPWOFOODd6xxh745n5SbqxfdT9xDaSFD0q8CUQA8HDZWHHvALMwK20osbIIkW-ZeAio/s1600/january+2014+041.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtUTcuJjvB9fQ7n2ZWyBX4COmMpqQdYJNHV1zHbKPYVHEwx5bcaVycVB9wThQ99vI_-G3HOgioiPWOFOODd6xxh745n5SbqxfdT9xDaSFD0q8CUQA8HDZWHHvALMwK20osbIIkW-ZeAio/s1600/january+2014+041.JPG" height="320" width="240" /></a>We had a doctor's appointment with Molly yesterday with the developmental pediatricians at Yale. We had started seeing them when our insurance was not accepted at Boston Children's and we needed help. Since changing our insurance 2 years ago, we have been able to be back at Boston, but have kept the Yale department in the loop. We see them infrequently, but they are intelligent doctors.<br />
<br />
It's taken me close to 24 hours to process the discussions we had during this appointment.<br />
<br />
The first topic, I agree with. They aren't sure how they actually fit into the treatment picture for Molly. I agree, they don't fit in. They were there when we needed them, but we completely trust our doctor in Boston even if we don't always agree.<br />
<br />
The second topic, I'm still struggling with. The doctor asked me if I ever thought about just giving up because we may never get a true diagnosis.<br />
<br />
We've heard a lot of Molly's current symptoms are the autism from some doctors and definitely neurological from others. We've had doctors tell us they know there is something, they just don't know what. My baby girl is a big old question, for which there is not a proper answer yet. Would you stop looking?<br />
<br />
I had to listen closely, to try not to be too defensive. She went on to explain that in looking at Molly's chart, there have been a lot of Emergency Room visits and admissions and various specialists. I can't argue with that. There have been a lot of visits. All except one, were directed trips by a medical professional, who we called. We don't just pack her up and go to the emergency room for a fun time. The pediatrician's office closes at 5pm, and our uber-popular Dr. C is often scheduled to the max and can't always make time for Molly.<br />
<br />
Some of her symptoms are really vague. Some of her symptoms are really scary. The large, red, painful welt on the entire back of her leg or the agonizing stomach pain that woke her from a sound sleep at 2am, or one side of her face that drooped followed by an inability to walk straight three hours later - all sent us to the ER. They all happened after hours, and they were all very scary. There have been more - falling out of nowhere multiple times a day, upwards of 6 or more zone-out spells in one day when she hasn't been having any.<br />
<br />
Then there's the nights where she looks at me with tears in her eyes, reaching to be held as tight as possible, uttering the words - "I just don't feel like me, I don't feel right". We don't go every time, if we did, we'd move in to the hospital! But to stop looking? I don't know how to do that. What if there is just one tiny thing that we uncover that helps to put all the pieces into place.<br />
<br />
I know we see a lot of doctors. Trust me, I get the bills.<br />
<br />
So, we've been told she fits into an autism diagnosis, but it doesn't truly explain her completely. What? At this moment in time, autism is the best diagnosis they can give her.<br />
<br />
We've been told she has seizures, but she's not seizing, but that might have been a seizure more times then I can even count. You get why I'm so confused right?<br />
<br />
Listen, I'm not going to put my girl through anything painful or stressful unless it's completely necessary. Routine blood work is necessary. Recurrent EEGs, probably not - so let's get those down to once a year or every 6 months unless it's an emergency! But, I'm not pushing for painful procedures - I'm asking for help. I know what I see, and my girl hasn't been the same since whatever that mystery illness was at the end of June. Very similar to right now, a few days of cold symptoms and a mild sore throat. Then she's just zapped and out of it and having all kinds of issues.<br />
<br />
She now needs orthopedics to help keep her ankles form rolling. Her gait has become more narrow, her balance is less. The say, this happens to kids with XYZ, but she isn't diagnosed with XYZ....<br />
<br />
So, NO - I will not give up. How can I give up? I know there may never be an answer, and our ultimate goal is to keep her as happy and successful as possible as well as safe. But, I look at kids who are now in their 20s and are just getting diagnoses for diseases that hadn't been discovered when they were little. Their parents never gave up - and it was not easy. I will never give up looking, because to do that feels like I'm giving up on Molly.<br />
<br />
Thanks for listening to my stream of consciousness.<br />
<br />
<br />
<br />Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com1tag:blogger.com,1999:blog-5189913051878988200.post-13305770269612664312013-11-18T05:43:00.004-08:002013-11-18T05:43:39.094-08:00this kid has timingFrom the day she entered this world eight years ago - my Molly has had timing! It is certainly not my idea of GOOD timing, but it's timing none-the-less. My head is still spinning and I am extremely grateful to Disney Junior and basement playrooms at the moment - as well as for the ability to have a hot cup of coffee this morning as I write what's been going on.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCY9ymDjq_2ahLJeKOEyeCjVyuBO3cOvPeEZEn344fv5tOTDTck72yD-AN6EA0gd3yqbrBFqFvverY3fY_sw8svD2X09dCTmDpKafl2DNELgbZWQTNMxRr3PlPE6QCyujue2zhvbrMWrQ/s1600/november+2013+024.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCY9ymDjq_2ahLJeKOEyeCjVyuBO3cOvPeEZEn344fv5tOTDTck72yD-AN6EA0gd3yqbrBFqFvverY3fY_sw8svD2X09dCTmDpKafl2DNELgbZWQTNMxRr3PlPE6QCyujue2zhvbrMWrQ/s1600/november+2013+024.JPG" height="200" width="150" /></a>A week ago - Monday the 11th - Molly woke up sobbing in pain at 2 o'clock in the morning. The intense stomach pains scared us as this is not typical for Molly, nor does it ever happen in the middle of the night. We called the on-call pediatrician and they suggested getting her seen. So, off Molly and I went to the ER. The nice thing about going to the ER at 2:30am - is there is usually nobody there - and since Molly's pain was presenting quite like appendicitis, we got right in. They did an extensive abdominal ultra-sound which revealed a perfect looking appendix (phew!) but showed multiple swollen messenteric lymph nodes. I had to look it up and have Dr. C explain this to me. Basically you have lymph nodes all over your body. They get swollen when there is some sort of infection in them - viral or bacterial. They cause a lot of pain and some patients were suspected of having an appendix rupture and opened up on the operating table only to find a normal appendix and lots of swollen lymph nodes. While in the ER - they dipped Molly's urine and concluded it was suspicious for a UTI. They started her on antibiotics and we returned home.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieKr2JUJsVeKg4r2KUImFe0Q0r901-1TBzsXC1Mh-fcqarV04a_RFnmDsyYOafsNs0uVAeREkr6p0lYO1JkwiS1N1iKFcmQVbaQVx8hAL1Md24lwiARkoBfPlRk5o0xQvwVHM85bqU1AA/s1600/november+2013+035.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieKr2JUJsVeKg4r2KUImFe0Q0r901-1TBzsXC1Mh-fcqarV04a_RFnmDsyYOafsNs0uVAeREkr6p0lYO1JkwiS1N1iKFcmQVbaQVx8hAL1Md24lwiARkoBfPlRk5o0xQvwVHM85bqU1AA/s1600/november+2013+035.JPG" height="200" width="150" /></a><br />
Fast forward two days to Wednesday the 13th. We had Molly's 8 year check-up. Dr. C spent a ton of time with us as there are a lot of legitimate concerns. We found out there was no UTI - hmmmm.... Also, we raised her newest med this day - guanFacine or Tenex. It's for ADHD, but it's also a blood pressure lowering medication (this becomes important). Wednesday she was off. She was tired, she could barely bare her own wait, she had no emotion behind her speech, she was slurring, she was stumbling - you get the picture.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGJU1hLOlX0wWQjs4kCoz3k3JOG89R6Iv0hQ9VMVw0G4cgOKWN_ghVuaPMND0AgeiDUvaBXTI_VZQL5cMjgWS-48zPWYHeWU_Dt7JclDZZnjS2TiBatQSA-74A2r1TfOYPypuermvhNFw/s1600/november+2013+040.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGJU1hLOlX0wWQjs4kCoz3k3JOG89R6Iv0hQ9VMVw0G4cgOKWN_ghVuaPMND0AgeiDUvaBXTI_VZQL5cMjgWS-48zPWYHeWU_Dt7JclDZZnjS2TiBatQSA-74A2r1TfOYPypuermvhNFw/s1600/november+2013+040.JPG" height="150" width="200" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPQ67fNrf-o9BGAITQaPypM8AXbVqZfjeyqoFAlnyEqU-V5EE63aqeKv1CNw1TxFVbxvh3rD9w6pbhboo0GG2G4gn8I8zsSOYHBq7tf-jKGrpsryn1tYI5p_INowrLn-J3Ra1tyuqdZM4/s1600/november+2013+067.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPQ67fNrf-o9BGAITQaPypM8AXbVqZfjeyqoFAlnyEqU-V5EE63aqeKv1CNw1TxFVbxvh3rD9w6pbhboo0GG2G4gn8I8zsSOYHBq7tf-jKGrpsryn1tYI5p_INowrLn-J3Ra1tyuqdZM4/s1600/november+2013+067.JPG" height="200" width="150" /></a>Thursday was her birthday - the excitement of that seemed to give her a little pep in her step - she smiled a lot, she looked tired again by mid-afternoon but it was definitely better. Friday we took her to NYC to have tea at the Plaza Hotel and visit FAOShwartz - It might have been her favorite present ever. As she and I sat on the train, I barely knew who I was riding with. She looked so very tired, and so very ill. It was her first train ride, normally she would have been bouncing around with excitement, but she sat curled up in the seat - so anxious about every stop we made, looking like she should just fall asleep. She was barely able to wait for a cab from Grand Central to the Plaza and then she collapsed in her stroller-chair when Chris met up with us. She didn't move from her chair but a few times. To see a few things in the Eloise store, to dance on the Big Piano at FAO (which she abandoned early because she was too tired) and to look out Daddy's office window. She passed out on the car ride home, while playing iPad.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGXaYeHh2B6zAsYvz3mGQLNE8QDXrbd6D1glW1svFwpA5HXxb7lkH70XAEmyurNmu-JIAfBy0TGsM08uxJhwDaT9V-8rOg5uHk5DrLS4DYkm7PCaEu0nqp3WGR2Z9h6yaatMjDcT0jfeg/s1600/november+2013+085.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGXaYeHh2B6zAsYvz3mGQLNE8QDXrbd6D1glW1svFwpA5HXxb7lkH70XAEmyurNmu-JIAfBy0TGsM08uxJhwDaT9V-8rOg5uHk5DrLS4DYkm7PCaEu0nqp3WGR2Z9h6yaatMjDcT0jfeg/s1600/november+2013+085.JPG" height="150" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxrRqUstBDM-7Ryy-d0KhLqKcG_rL7bwiEKbYsoW3UOEF8pFpzfCJkcKSezDkKaIdfjJ8nBQ52n73fD3Ft5zPRt2jx5q7RjKw9edOMEeqU2l7guJlrYH3mI6BwZ1kc8HOnjcMMvx8ZHxA/s1600/november+2013+089.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxrRqUstBDM-7Ryy-d0KhLqKcG_rL7bwiEKbYsoW3UOEF8pFpzfCJkcKSezDkKaIdfjJ8nBQ52n73fD3Ft5zPRt2jx5q7RjKw9edOMEeqU2l7guJlrYH3mI6BwZ1kc8HOnjcMMvx8ZHxA/s1600/november+2013+089.JPG" height="200" width="150" /></a><br />
Saturday and Sunday were more of the same, but getting progressively worse. She couldn't form sentences, she was so spacey we had to repeat ourselves 3 or 4 times. She complained of feeling clumsy, of a headache, of not being able to focus. By Sunday she was walking into walls, slipping off step stools, falling off the couch and just looking like she was asleep sitting up. I should also mention that from Thursday on she has had black stools (I hope that's not TMI). So, around 4:30pm on Sunday - I called the pediatrician. He suspected the Tenex - which I didn't disagree with, but since he didn't prescribe it, he suggested hanging tight and talking to Boston. At this point Molly had curled up in my lap and was crying because she just didn't know what was wrong but she just didn't feel well. So, I followed my instinct and called the on-call epilepsy fellow up in Boston. His initial reaction was to hold meds, but since we couldn't tell if the increase zoneyness was actually seizures and because she seemed to be spiking a temp and because there were just so many factors - he suggested she be seen in the ER. I had to agree with him.<br />
<br />
Now remember what I said about timing. We headed to the ER around 5:45pm last night (Sunday). Chris's car service was picking him up at 3:45am Monday morning to go to MN for business. This would surely be tricky, but her health and well-being comes before tricky parental planning! Luckily my amazing parents and my awesome friend Amy both volunteered to help should Molly be admitted (which she almost was). So, anyway - we got there, and they put us right back in a room. They wanted to check some things out, draw some labs and see if they could get stool. When they came back to do vitals - things got interesting. Molly's blood pressure took a dip. So the plan for labs changed from just getting labs to getting labs and putting in an IV and giving a bollus of fluids - which did bring her blood pressure back into the normal range after an hour. The team at Yale talked at length with the team in Boston and they decided to have us hold meds and call the team in Boston first thing this morning (which is what I am doing right now).<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTWk9zfGqtnP-B3USCiHPSpiRxfvpXZV-nNV7oXpoJuDgUdlh8VLN6U1s_UpF7tVFX9nL_f4tdzu1qaJyuPA09UB51gCi-Y4b0uYI7UHeNLZgZjkzGoPi9J0eaAKhPzwQLnsVFfskEbK0/s1600/november+2013+002.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTWk9zfGqtnP-B3USCiHPSpiRxfvpXZV-nNV7oXpoJuDgUdlh8VLN6U1s_UpF7tVFX9nL_f4tdzu1qaJyuPA09UB51gCi-Y4b0uYI7UHeNLZgZjkzGoPi9J0eaAKhPzwQLnsVFfskEbK0/s1600/november+2013+002.JPG" height="150" width="200" /></a><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPr8HgM-RaFv64DY8ISaPFoEi8YWvp9SgTjzvfWQB57rbqSPJdab0uts1h3ZsY2w_lM4BpeW91-2eS7iW1BGggXS7nUlGlZ1xIPAeAqfGq9KEiCFsFVmELDpnZDLYcQORmgmToCp6mPks/s1600/november+2013+001.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPr8HgM-RaFv64DY8ISaPFoEi8YWvp9SgTjzvfWQB57rbqSPJdab0uts1h3ZsY2w_lM4BpeW91-2eS7iW1BGggXS7nUlGlZ1xIPAeAqfGq9KEiCFsFVmELDpnZDLYcQORmgmToCp6mPks/s1600/november+2013+001.JPG" height="200" width="150" /></a>Molly is still curled up in my bed sound asleep. The two littles are down in the playroom, as they got up about 5:45am! Kennedy has an awful cold that just won't go away, and Zoey is every bit a feisty almost 18 month old with a drippy nose. Chris got on his plane successfully and my wonderful father is going to come down so I can do a few things today (like clean the bathroom!). Tomorrow, Molly and I travel to Boston to be fitted for her ankle braces and meet with the orthopedist to discuss our next steps.<br />
<br />
The journey of a special needs parent is filled with a lot of twists and turns, a lot of bills and a whole lot of difficult decisions. However, it's also filled with cherished memories, millions of moments you don't take for granted, and big words that make you sound really smart. Heck, I pulled out Mesenteric Lymphaditis last night. :o) Thank you for your continued good thoughts and prayers for our family and for our Molly. She truly is a special spirit and we are blessed to be her parents.<br />
<br />
And if you're interested in reading more from me, I am a regular contributor to the blog: <a href="http://www.smartappsforspecialneeds.com/">www.smartappsforspecialneeds.com</a>.<br />
<br />
<3 Amanda<br />
<br />Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com5tag:blogger.com,1999:blog-5189913051878988200.post-47839969356546798062013-10-30T11:33:00.001-07:002013-10-30T11:33:22.090-07:00Molly's marathon appointments - October 2013<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGG8sEXSm2PITZ2Y1-6G9B5ZO5BguGhLiOMqMvQ49YTjSFONlo3ayWrhD_yoRtYnpN3koJ6PcmzQnXtb6TlIXMqKuTTdAA5DNvWVpfvCLcMLE_ODMm99Km1AdHWELM228rA0NkFigkvjY/s1600/molly+3rd+grade+2013.jpg" imageanchor="1" style="clear: left; display: inline !important; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGG8sEXSm2PITZ2Y1-6G9B5ZO5BguGhLiOMqMvQ49YTjSFONlo3ayWrhD_yoRtYnpN3koJ6PcmzQnXtb6TlIXMqKuTTdAA5DNvWVpfvCLcMLE_ODMm99Km1AdHWELM228rA0NkFigkvjY/s1600/molly+3rd+grade+2013.jpg" height="320" width="199" /></a>It has been quite a few months for Molly. After spending a great majority of the summer on the couch, so fatigued she was unable to do anything, Molly did start to get some of her spark back. Vacation to Myrtle Beach helped a bit, and getting back into the routine of school really seemed to help. If we've learned nothing in the past almost 8 years, it's that Molly LOVES structure and routine and thrives on it.<br />
<br />
After July's hospitalization, testing and appointments, we did our best to get a program in place that would work best for Molly. We got an out-of-network exception and were able to get a private ABA therapist in the house 2 days a week to work on the behavioral aspects of Molly's impairments. Ashley and Britta are a wonderful team and Molly is progressing with their help. We've kept the 1:1 at school and every pull-out and push-in therapy we need is in place (minus in-school ABA); this is all helping Molly keep up with the rigorous third grade curriculum. As far as seizures go, we've noticed some staring spells, but no convulsions (knock on something!)<br />
<br />
So, a lot of good stuff. However, on Saturday of Columbus Day weekend, Molly was just standing in the hallway one minutes and the next minute she was like a rag doll and had crashed to the ground. We didn't know what to make of it initially and chalked it up to something suspicious - but just kept an extra eye on her, I even went to her theater class with her. She seemed zoney and tired and a bit wobbly. Shortly after coming home from theater class we heard a huge crash in the bathroom and found a rag doll slumped on the floor again. Now the hairs on the back of my neck were standing up. As Chris and I tried to decide what to do, she fell again outside. Somehow she didn't seriously hurt herself - thank goodness! We called the pediatrician's office hoping they'd just say keep an eye on her, because we knew calling Boston would mean going to the ER. Well, the pediatrician's office agreed that the ER was where we needed to go, as these could very well be some new seizure type. Turns out the docs agreed and she was admitted for eventual monitoring and then a quick MRI. Nobody discovered anything, but her mental status had returned. So - no answers - just more questions.<br />
<br />
This takes us to our marathon of appointments the last 2 days. We started Monday morning with the Keto Dietitian and Doctor - since Molly is on Modified Atkins (or Modified keto) we have to closely monitor EVERYTHING. We don't weigh or measure her food, but she's on a very high fat, very low carb diet - like 15 grams of carbs a day. She gets a bunch of Mayo and whipping cream. And, although we've seen a new piece of Molly unlocked with this diet, I fear her little body can no longer handle the stress of it. When we began in April her total cholesterol was only 178, on October 2nd it was 338. That's a big jump, but not unexpected when you're on the diet and it almost always resolves when you go off. However, the concerning part was that her fasting levels yesterday (10/29) were 429 - so it's gone up incredibly fast and is higher then any of us are comfortable. It's one of those awful decisions where you have to consider the piece of her you've unlocked, versus giving her heart disease at a really young age. Since we weren't using the diet to control seizures, we are going to back way down on the fat. Our plan is to slowly transition Molly to an LGIT (low-glycemic index treatment) or South Beach style diet. The reasoning is her doctor feels Molly did so well cognitively on the diet, not because of just the diet, but because of the structure of the diet - so we don't want to lose that! Molly is also still growing at the 95th percentile for both height and weight, but her BMI is in the acceptable range.<br />
<br />
From there we went to endocrinology. With thyroid issues in her genetic make-up and a wonky test, along with some of her strange autonomic issues - we decide to get a full work-up. As of right now - no endocrine issues - good news! She just has to have a thyroid function test yearly and since there was the presence of antibodies, she will likely develop hypothyroidism - but we're totally on top of it.<br />
<br />
Next we went to a research study, which was quick and painless and then we found our hotel and Molly discovered the swimming pool, Texas Roadhouse, the mall and how to take up and entire King-Size bed and use your super cold feet to push Mommy out!<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEike5SMSGijTp3jr4LwBqOvDttTGGmKcJTrASyPX8NJzq2bTSvn5V2AVTa-1ecR3sUGIP4hy9-ZN7Zi53nN_2_7JGjJsT2oC1h9YJtfd0RtAzn4Uj7du8oTbvUdwSnrLpYgNe7DuvoQLeA/s1600/october+2013+032.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEike5SMSGijTp3jr4LwBqOvDttTGGmKcJTrASyPX8NJzq2bTSvn5V2AVTa-1ecR3sUGIP4hy9-ZN7Zi53nN_2_7JGjJsT2oC1h9YJtfd0RtAzn4Uj7du8oTbvUdwSnrLpYgNe7DuvoQLeA/s1600/october+2013+032.JPG" height="320" width="240" /></a>Tuesday morning - we had to be at the hospital when the lab opened at 8am for a fasting blood draw and then straight upstairs to development for an 8:30am appt. Her dr. was pleased by the progress she's making and attributes a lot of it to the coping skills we've taught her, to the ABA therapists, to the 1:1 and to the program at school. Molly talked about FRIENDS by NAME!!! she talked about things that weren't completely Molly-centered and she drew a detailed picture - these are HUGE accomplishments. There is still a lot of concern about the structure and semantics of her language, the reciprocal interests, the emotional connections and understanding. The biggest concern, right now, however is attention or lack there of including the fidgety "ants in her pants" syndrome she seems to have. We've been talking about a med since before Molly was 5 to help with this. We've tried everything we could to help control this piece of Molly's make-up without using medication, but it's not working. Molly needs help to calm her body and her brain and the Depakote alone isn't cutting it anymore. So we're going to try a very mild and long used med that has virtually no side-effects, because everyone believes Molly is EXTREMELY medication sensitive. We go back in three months - but we have a lot of good information and support form them!<br />
<br />
Next we checked in with orthopedics who had made a special appointment with us, since they knew the 15 minute slot allotted in clinic would be no where near long enough. He was still in surgery, so Molly and I traipsed over to the Galleria and she got a real, hot breakfast at 11am! She was thrilled by her omelet and strawberries with whipped cream. We talked, we laughed, we colored and she told me this was the best vacation she ever had because we got to be together. All the doctors, all the poking, prodding and pushing and she couldn't be happier. Afterwards we found Mommy a big coffee (cold kid feet and no room in bed) and went to wait in orthopedics.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsKryqzXSRWbe6ZmwtrqqxWNb0VDUU6JUMQM3Xhf41Lw_5vIrSrQwH07EUeLLb5PmRNRE6kPqM4eegGehaPUtdZ6baJ2sEOIY1NYyeNNmRpuBQsig-wmijPga3OO6q-24fCB-u6IOlgtc/s1600/october+2013+049.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsKryqzXSRWbe6ZmwtrqqxWNb0VDUU6JUMQM3Xhf41Lw_5vIrSrQwH07EUeLLb5PmRNRE6kPqM4eegGehaPUtdZ6baJ2sEOIY1NYyeNNmRpuBQsig-wmijPga3OO6q-24fCB-u6IOlgtc/s1600/october+2013+049.JPG" height="320" width="240" /></a>I was skeptical, as we'd been dismissed from an orthopedic when she was under 3, saying she was normal and nothing was wrong. But, I've seen a great change in her gait. What used to be very wide-based is not very narrow, one foot turns really far in, her knees knock. Her movements are very jerky. I knew it wasn't ok and the doctor agreed. He really didn't like how floppy her ankles and knees were, how easily he could roll them and move them all about. He watched her walk, he played with her legs and he promptly ordered she be fitted for custom SMOs and that we also get elastic knee braces. We would get these made, come back for a fitting and then x-ray her hips and back to see where the issues really begin. The hope is that the supports and continued therapy will correct a lot of the problems. We'll see. We ended the day at the brace shop getting casts made of Molly's feet so they could create her custom ankle braces and we'll head to Target today to try and find the right size in knee braces. This is a whole new avenue, one I know little about, so I'm learning as we're going. But Molly was happy to pick out butterfly patterned inserts with purple fabric straps.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCwEvVuWjjr0QhwBITFTxWE07feeHRqOqowon1gNzL-aM4q2t48V1kRYvlyg014JaE1HY8dtNLF_XxqmOMd-wMF3xPyFlQuOolCvnnsEJlahSmmspaCvKfG88QoyYEd0Hs33Eu9MyB_bA/s1600/october+2013+046.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCwEvVuWjjr0QhwBITFTxWE07feeHRqOqowon1gNzL-aM4q2t48V1kRYvlyg014JaE1HY8dtNLF_XxqmOMd-wMF3xPyFlQuOolCvnnsEJlahSmmspaCvKfG88QoyYEd0Hs33Eu9MyB_bA/s1600/october+2013+046.JPG" height="320" width="240" /></a>Between orthopedics and the brace shop we saw our beloved Dr. P. who was as concerned as we were with all the falling. She was reassured to see Molly be able to walk a straight line as this meant her cerebellum was in tact. She's unsure what to make of the episodes, but wants Molly watched closely. She says we cannot increase the Depakote, as Molly's white count is too low and higher doses have depleted this even further in Molly in the past. She has agreed with the development dr. to add Guanfacine (Tenex) to her regimen, but extremely slowly and cautiously. She's also said to come off the diet once we get that up and running, but to go ahead and cut back on the fat now. She, however, does want us to stay on some kind of a diet plan. We go back in February to see her and development and they are always available to help us.<br />
<br />
Beautiful Molly was wiped last night and crashed hard. She made it to school today , and we'll see what kind of shape she's in this afternoon since we have to go to Target to pick up meds, the braces and a few odds and ends.<br />
<br />
So - if you wondering what was going on - there you go, if you weren't - I gave you WAY too much information. We're happy to share Molly's journey, as she is such a strong spirit and she never gives up. She actually asked me, "Remember when I couldn't read Mom? Well, I just kept trying super hard and I didn't give up - now I can do it!". She's so right - every day is a new challenge and every challenge brings a lot of questions. But her amazing spirit and sparkling smile keep us pushing forward. Thank you for thinking of her and we'll keep letting you know what we find out as we find it. Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com2tag:blogger.com,1999:blog-5189913051878988200.post-44293226173416124262013-09-25T08:08:00.000-07:002013-09-25T08:08:55.755-07:00Disney MagicBack in the Spring, a story broke on the Today Show about socialites who were hiring disabled individuals as tour guides to either pose as family members or part of their party so that they may gain faster access to rides and cut their wait time down at popular attractions at Disney World. Being a mom of a special needs kiddo, this story made me sick to my stomach. To think there was such insensitivity and a sense of entitlement in the world - just blew my mind! Being the Disney lovers our family are, we have followed the stories that have been coming out quite avidly. With Disney set to unveil new rules regarding Guests with Disabilities, the web has been abuzz with blogs - some full of speculation and others fact. But, it was the comments from others that got my blood boiling. Things like, "just teach your kids to deal with lines, I manage my 2 year old!" or "if you don't want to wait in lines, then don't go to Disney World". The biggest problem, in my opinion, is lack of understanding on the general public's part both into Disney's policies and into what life is like when you have a special needs child. <div>
<br /></div>
<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZV_oA_4MuDrm__bIW1w5tOCSMNyZJRl6v39lG4w7CqlXZofug2lvD-z6TQTEaGaLo1dFEv8mw_hGzjFHRM7iEHAjFe2YooKHAEFdveRt_ZnQ4Lhq3C0TOg_PeULWskab0LbMc4ctiEVM/s1600/Disney+World+2010+155.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZV_oA_4MuDrm__bIW1w5tOCSMNyZJRl6v39lG4w7CqlXZofug2lvD-z6TQTEaGaLo1dFEv8mw_hGzjFHRM7iEHAjFe2YooKHAEFdveRt_ZnQ4Lhq3C0TOg_PeULWskab0LbMc4ctiEVM/s1600/Disney+World+2010+155.JPG" height="150" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgktUlmqt5qxrnK6YPhSGhuNmOVd3uoJGjC0g9mwoWbVpDJmoB6fo3zzpLQyLxZshuZRl2_vtiJbOKgof9GOHkWidEj1-82loGK6emC-D3Vg3WUY1guikttME1kJOQCJXMt6vvO3pcHdXk/s1600/101_0978.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgktUlmqt5qxrnK6YPhSGhuNmOVd3uoJGjC0g9mwoWbVpDJmoB6fo3zzpLQyLxZshuZRl2_vtiJbOKgof9GOHkWidEj1-82loGK6emC-D3Vg3WUY1guikttME1kJOQCJXMt6vvO3pcHdXk/s1600/101_0978.jpg" height="150" width="200" /></a>As I tend to not be able to "just let things go", I called Disney up this morning. I asked them about the policy changes and how this will directly impact MY CHILD. Molly has Autism, ADD, Seizures, Heat Intolerance, Sensory Disorder, Developmental Coordination Disorder, and Asthma, with more diagnoses likely after upcoming doctor appointments. Due to all of these conditions and her treatments she also fatigues very easily and is unable to stand for lengthy periods of time. Heat and fatigue mean more seizures and uncontrollable meltdowns. We discovered, very early on, that a lot of these issues could be kept in check if Molly was allowed to stay in her special chair while waiting in line or watching shows. Instead of managing meltdowns and constantly replacing ice packs in her cooling vests, we are able to push her through the parks and wait in lines with her seated. She is able to focus on reading the map or her beloved guide book, instead of falling into people or accidentally stepping on everyone within a certain radius of her. I still carry and manage my 2 younger, somewhat typically developing children. There are still rules and expectations put in place for their behaviors. </div>
<div>
<br /></div>
<div>
To the people who say, then don't go to Disney if she'll have a meltdown. I ask you, what you think I should do? Should I sit in my house all day, emerging only when you will not be inconvenienced by my child trying to express her needs? Should I not try to make memories for my family that are not filled with hospital rooms and doctor's visits? Is it not fair that I get to capture those happy moments on my kids' faces? My daughter was made different, her brain works differently. She's had people tell her their kids can't be friends with her because she's different. She's been told she cannot do gymnastics like her sister because she's different. She's been told, no - you can't eat that piece of cake or that apple because it's not on your special medical diet. She's been told no so many times in her almost 8 years. She's also been told, yes you have to have another blood test and yes another doctor has to examine you and yes you have to have all those buttons glued to your head yet again. You, the naysayers, have no idea the day to day dealings with my child. You also have no idea the intense planning and saving that goes into a Disney vacation for this family. We only go during cooler months and when it isn't as crowded. This means that the kids miss school - but since Molly cannot handle crowds or heat - we already make this accommodation. We save for years to plan our trip. We don't go out to eat, we don't go to the movies, we tell our kids "no" a whole lot - so that we can say yes to a magical trip every few years - filled with memories and happiness. </div>
<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgu9kGqgDEI0Q_JvtrpBK4I2kGnSmduH1167WbrGQOr-RxzesWPF0A8NliGPlLR-JXrO4pjrt_-B4ExyPM3w8Piz03IhDHlRH64tWQcqViFI_rmyvf34lPKvVqhHBJNOnaJTRvBFGDmdVU/s1600/Disney+World+2010+272.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgu9kGqgDEI0Q_JvtrpBK4I2kGnSmduH1167WbrGQOr-RxzesWPF0A8NliGPlLR-JXrO4pjrt_-B4ExyPM3w8Piz03IhDHlRH64tWQcqViFI_rmyvf34lPKvVqhHBJNOnaJTRvBFGDmdVU/s1600/Disney+World+2010+272.JPG" height="150" width="200" /></a></div>
<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5w0Z1wXksdIJ2iJhSF5mZqUUx1OcsZTDYtBTCoTcBw52BO9rGtgb5Yp8FpLDntLjg3uNcfi9ZW_X4OacKtkHJY2eMu8Y_AL3BkZgk57iYRd9PEqKsFG5s1oqTnm_Tijyz30Um-lNHFAQ/s1600/Disney+World+2010+234.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5w0Z1wXksdIJ2iJhSF5mZqUUx1OcsZTDYtBTCoTcBw52BO9rGtgb5Yp8FpLDntLjg3uNcfi9ZW_X4OacKtkHJY2eMu8Y_AL3BkZgk57iYRd9PEqKsFG5s1oqTnm_Tijyz30Um-lNHFAQ/s1600/Disney+World+2010+234.JPG" height="150" width="200" /></a>According to Disney, Molly can still stay in her adapted stroller for those rides with lines wide enough to accommodate it. This means almost every single ride in Disney World. She has always waited in these lines and has never been ushered to the front. There are only a handful of rides that I can think of in Old Fantasyland that don't have lines wide enough for the chair. For these, she would have to get a special pass to come back to the ride at a specified time. We've never cut the line. That is a privilege reserved for kids on a Make-A-Wish Trip. These children with life-threatening illnesses and their families are THE ONLY kids that cut to the front of the line. This past trip, we were waiting to see Minnie Mouse. Molly was in her chair, 3 year old Kennedy was impatient and 6 month old Zoey was crying. We were put on hold so that a family on a Magical Make-A-Wish Trip could hug and take a picture with Minnie. I explained to my child that just like her, that little girl had to go to the hospital a lot and meeting Minnie made her very happy, but that unlike Molly she just couldn't wait today. I don't know if Molly understood or not, but I watched the smile on the Make-A-Wish kid's face and tears welled up in my eyes. Truth is, someday that could be us, making as many memories as possible in our kid's favorite place in the world - but today it wasn't, today we could wait five more minutes to see Minnie, because we had 5 more minutes. </div>
<div>
<br /></div>
<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig3q01SRH_i3Usd2Rq8qRYspC0lUsiuP06zr67a2LSn3RibEMRy4fyFNFQpqrHGgArTOGKY_bpQDQ7BNeIz6QbhyphenhyphenDDqZEBl0NWyZO_N_lWMTE-efZ7Ayjcvtf-qwTst3XPs67nxhE7CnA/s1600/IPHONE+PICTURES+638.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig3q01SRH_i3Usd2Rq8qRYspC0lUsiuP06zr67a2LSn3RibEMRy4fyFNFQpqrHGgArTOGKY_bpQDQ7BNeIz6QbhyphenhyphenDDqZEBl0NWyZO_N_lWMTE-efZ7Ayjcvtf-qwTst3XPs67nxhE7CnA/s1600/IPHONE+PICTURES+638.JPG" height="200" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEB6XD9VRHWYYaCXxYkozjsZM1esFdJlf5EOGXb7AHOHhD9Bu9kVlpNCkczBc5DKw9lQYB6HQH-QoNpET9t5ulmov0qGTlRAEzT7KDTdfIFtwnukU9o7BKFZsjMjVpfreyycJRa2ooEB0/s1600/IPHONE+PICTURES+650.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEB6XD9VRHWYYaCXxYkozjsZM1esFdJlf5EOGXb7AHOHhD9Bu9kVlpNCkczBc5DKw9lQYB6HQH-QoNpET9t5ulmov0qGTlRAEzT7KDTdfIFtwnukU9o7BKFZsjMjVpfreyycJRa2ooEB0/s1600/IPHONE+PICTURES+650.JPG" height="200" width="150" /></a>And so for Peter Pan's Flight, Small World and the handful more that aren't wheelchair accessible, we'll get a Guest Assistance Pass or a regular Fast Pass. The new policy is put into place because people were abusing the system and Disney had to respond in a way that was both fair and still accommodating. It won't make everyone happy, nothing ever does! My concern really isn't for the new policy, it's more for the culture that some people seem to be raising. One that truly locks special needs children into a room and doesn't let them out to mingle with typical citizens. Shame on that culture. Open your eyes and yourself to the beauty of a special needs child, the gifts they possess and you will feel your heart open with love. For the culture of families that embrace every child, no matter how different, Thank You! Thank you for raising accepting citizens who understand that underneath disabilities and limitations, there are people who all possess a special gift. </div>
<div>
<br /></div>
<div>
We're planning our next trip to Disney, and it will be filled with accommodations we put in place for our children, typical and special. It will be helped by Disney being understanding and helpful and it would be nice if every single person in the parks just smiled at my daughter as she rides around in her adapted stroller beaming like the princess she is!<br />
<br />
<br />
<br />
</div>
Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com0tag:blogger.com,1999:blog-5189913051878988200.post-77489568233321720372013-09-19T07:40:00.002-07:002013-09-19T07:40:23.980-07:00the anxiety attack<i>Anxiety, you pesky beast. You really do like to strike when least expected! </i><br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKo-BlQZqJ8BfUuEc3F0qZ3kYplnim4qGC1dEM9HwcD2hOpIwaeX9oZ166HakpkkKw_ZKz73DgoRUqAQ-WC6R2fsWS9ZsqMtOjbGJ3E3oFadkucqJNm1fRP3xCCs2ZbeFQSs2W5fdiDos/s1600/4.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKo-BlQZqJ8BfUuEc3F0qZ3kYplnim4qGC1dEM9HwcD2hOpIwaeX9oZ166HakpkkKw_ZKz73DgoRUqAQ-WC6R2fsWS9ZsqMtOjbGJ3E3oFadkucqJNm1fRP3xCCs2ZbeFQSs2W5fdiDos/s1600/4.jpg" height="151" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">That's me on my 1st Birthday with my gorgeous Mom</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlME6CBuU8jBXzB7TPKVVK6RzsMW3pC2TrWurmqOC_WW0B55LGNx6sea2JGBVcEqDMIjDF2HjxC00EXt4LQngMcEoSqCm07zCOEgU7nOx-0bgLG4ZPOjsU46KiPItha-Ed6JzNuZ0IqQA/s1600/10.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlME6CBuU8jBXzB7TPKVVK6RzsMW3pC2TrWurmqOC_WW0B55LGNx6sea2JGBVcEqDMIjDF2HjxC00EXt4LQngMcEoSqCm07zCOEgU7nOx-0bgLG4ZPOjsU46KiPItha-Ed6JzNuZ0IqQA/s1600/10.jpg" height="200" width="170" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Baby Amanda</td></tr>
</tbody></table>
I do find it somewhat amusing that I wasn't able to put the correct name to this feeling I've had my whole life until I watched my own child struggle with her own anxieties. With Molly the world is black and white or more accurately pink and purple. Things are logical, they make sense, there is a why. When things don't fit into her plan, or into the picture of life she has in her head - she will start spiraling. The anxiety she feels over this will set off panic attacks. Her palms will get sweaty, her heart will race, she will have stomach pains, she will cling to me and crawl into my lap. That's the simple part of Molly's anxiety and the part that I finally recognized in myself. What's not simple with Molly is when her tolerance levels are lowered by illness, or seizures, or when unknown stimuli set her off. What's not simple is that she doesn't have the appropriate language or understanding to tell me what is going on. So, she pick her nail beds raw, she picks scabs until the bleed and she goes into "Molly's World".<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL6OvfeVsI3w6P4g26_RandinqY7EsEjjdu15fsyhyphenhyphenPk90mZJQfp5UHNiHDqEbtjb2_BMB6gea0ghIepz_dsClIsZaxAuWJmiBsk-rTzRvDfmOeDB6SV6Y2DAmsDhtbTsAUI6E_xCYNhM/s1600/19.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL6OvfeVsI3w6P4g26_RandinqY7EsEjjdu15fsyhyphenhyphenPk90mZJQfp5UHNiHDqEbtjb2_BMB6gea0ghIepz_dsClIsZaxAuWJmiBsk-rTzRvDfmOeDB6SV6Y2DAmsDhtbTsAUI6E_xCYNhM/s1600/19.jpg" height="148" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With Mom and Dad at Molly's age</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivPeN3Uue0GmsOH32vDfMPtZr6ioL3R5V_KyOsbwc3AjOcbacPSx9BcN6AYSnjoQVO5VKQ-eYIRmS7u1Gj8vU6soqjdZllSmE3jnGMJIaSZv-AC8CNNPppRRE5172HKId8YZbADWc7DSU/s1600/36.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivPeN3Uue0GmsOH32vDfMPtZr6ioL3R5V_KyOsbwc3AjOcbacPSx9BcN6AYSnjoQVO5VKQ-eYIRmS7u1Gj8vU6soqjdZllSmE3jnGMJIaSZv-AC8CNNPppRRE5172HKId8YZbADWc7DSU/s1600/36.jpg" height="200" width="135" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With my 2 best friends</td></tr>
</tbody></table>
And so, I must now figure out how to treat myself and give my daughter the coping skills she needs to deal with everyday life. As far back as I can remember I would get sore throats before school, I would get stomach aches to the point it would make me sick. I was bullied as a child. Being overweight and soft spoken, I was an easy target. I was picked on, called names, and even beat up at one point. I tried to fit in, but it wasn't worth it. Elementary school was tough, but I had some really good friends and I had an innate love of learning. Middle school had it's moments. But when I wasn't in the music room, or on the stage, or in the safety of a classroom - I was scared to death. Kids can be really mean. I still hear some of the names from those days, and I cringe - how do you forget years of torture? I think that's when my anxiety began for real. Any time I had to go into a new situation or try something new or if my parents were going away - I would turn to stone inside. I would freeze. Anything that came out of my mouth was wordy and didn't ever accurately express my feelings.<br />
<br />
Then came high school. I'd love to say I was one of those kids who blossomed over the summer from 8th to 9th grade - but I wasn't. Still overweight, and forever awkward - I was really nervous for school. I swear my amazing friends - who are still extremely important parts of my life, really helped me build character during these years. I joined a peer leadership group, I fell in love with theater and music and I began to learn who I was inside was what really mattered. By senior year of high school, I was confident and I was pretty happy - at least that's what I remember. And then came college - and away went the shy person I once was. I figured out what I was made of being 4+ hours away from home. I made new friends, had some of the most amazing musical experiences and mentors a girl could wish for. That pesky anxiety feeling only reared her head during appropriate times - auditions, solo performances, juries - things that made me question myself and my confidence.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYkDK5zRRHab7slBLKwhpsYnN7J4PiLb5ud32diNVbwY2xeAFJ_Ya0e1WqlZLUjb0vPc-QJjJzCm4Gy9ev7WsksbENxQk1hcO9ysXWbJ5GEqkXtKOTnBrbc7h7PNgkJO7bO5r-QTy1kQY/s1600/49.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYkDK5zRRHab7slBLKwhpsYnN7J4PiLb5ud32diNVbwY2xeAFJ_Ya0e1WqlZLUjb0vPc-QJjJzCm4Gy9ev7WsksbENxQk1hcO9ysXWbJ5GEqkXtKOTnBrbc7h7PNgkJO7bO5r-QTy1kQY/s1600/49.jpg" height="161" width="200" /></a>I'm extremely lucky to have had educators throughout my entire life who valued the whole child. I learned math, English, Social Studies, Science. I read Thoreau, Shakespeare, and every author in between. I discussed politics and learned of cultures I would never see at Disney World! I sang music more beautiful then my ears could have hoped for. But in teaching me all these things, these teachers taught me that I was important. That my opinion was valued and that I had a lot to offer to the world. From the very beginning, I looked to my teachers as mentors to help guide me through life. My parents are amazing individuals who continue to inspire me to greatness. They have strong convictions and raised us with so much love an affection - but as Hillary Clinton said, It takes a Village. I think a lot of Molly's anxieties are held in check in school because of the incredible support system she has. I truly feel like we are a team, helping to shape her. And now that Kennedy has started school too - I see her admiration for her teacher and her desire to learn school subjects and about herself. Kudos to my teachers and to Molly and Kennedy's teachers. Alas, I digress - it's so hard when your brain travels a million miles a minute!<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0NlFFr18KOJoF_GKt7rWBY-uSWl5DAOKJHnOBiAPqUbWlszEio6Dofjr8V3r04rBoAxVVs69qCzTSxfPobzELgguHGHRmLWeJJCqNm4kMrFP-8okgaF2w-ULX8Zr9rM8P7TED3xPVG_s/s1600/100_1484.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0NlFFr18KOJoF_GKt7rWBY-uSWl5DAOKJHnOBiAPqUbWlszEio6Dofjr8V3r04rBoAxVVs69qCzTSxfPobzELgguHGHRmLWeJJCqNm4kMrFP-8okgaF2w-ULX8Zr9rM8P7TED3xPVG_s/s1600/100_1484.JPG" height="133" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tiny Baby Molly</td></tr>
</tbody></table>
So, my anxiety remained in check for many years. It really didn't start rearing it's ugly head until Molly was born. She was early, she was tiny, she made noise! She didn't come with an instruction manual and I was terrified of messing up. I got past that as new mothers do, but then she had her first seizures and life has never been the same for me. A dear friend shared with me that when you have kids like her son or my Molly it's like you are constantly suffering from Post-Traumatic Stress Disorder. You never know when the kids are going to seize, and you know when they get sick - they get really sick. You've seen friends bury their children, you watched in disbelief as toxic levels of medication are pumped into your child. You put them to bed every night, just hoping they will wake up tomorrow. That's when my anxiety and panic attacks hit, about 10:30pm - they kids have been asleep for a few hours, but maybe they bumped into the wall or Molly's playing the "hokey-pokey" in her bed and I'm on full alert. That fight or flight response gets my heart beating faster, my stomach turns to stone and my brain starts spinning. It takes every ounce of self control not to just sleep on their floor. So, instead, I sit on the couch and stare at the video monitor, taking deep breaths and telling myself - it will be ok, and if it's not ok - you'll deal with it then.<br />
<br />
Last night's anxiety attack was rough. It started when we put the big 2 to bed and Kennedy said "My tummy hurts". Logically I knew she had not mentioned this at all before, that she had had cheese in her dinner, and that she's a refluxer from way back. Logic wasn't controlling my autonomic system and my heart started racing. My stomach then turned to stone and I had trouble choking down a piece of toast. Some quality couch time with the husband and spider solitaire on my phone succeeded in calming me down - it was a small attack and I actually started drifting off - so we went to bed. Then a BIG OLD panic attack hit. It was awful - but thankfully, I knew to come back to the couch, breathe and hop on facebook chat - and pray for someone who knew me and could talk me down. My dear friend was on, and through typing to her I was able to regulate my breathing and things were fine. I have a prescription for Ativan - I'm too chicken to use it., especially since I know Molly can't be on benzos because it makes her sleep apnea worse.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0SayEp1cZ3O4v9XmDrPjpqHGd97hfmYxRDk7hYDcB2GNzb8IfzHDYVbXe-mEEl-Ysf4qaQlxUqTPqUXVW0kMSgIIWNAANVJVZ7RJKA2vKsHT2ScvWmrk1DA2s9a1v76gqNZy1KHgYBgQ/s1600/huge+arse+wedding+party.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0SayEp1cZ3O4v9XmDrPjpqHGd97hfmYxRDk7hYDcB2GNzb8IfzHDYVbXe-mEEl-Ysf4qaQlxUqTPqUXVW0kMSgIIWNAANVJVZ7RJKA2vKsHT2ScvWmrk1DA2s9a1v76gqNZy1KHgYBgQ/s1600/huge+arse+wedding+party.jpg" height="138" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just a smattering of our support system</td></tr>
</tbody></table>
So, year - anxiety is a real thing. It's debilitating and given all the things going on in our world - it's amazing any of us can function, let alone leave the house. But, I find if I remind myself that each day is a gift, that you need to make happy memories and that worrying isn't going to fix things - I can usually get myself back on track. It also helps that I have some really amazing family and friends. I just feel they put me way too high on that pedestal sometimes. I'm human and I have an Achilles heal - I break too. I guess it's true, every person is fighting a battle that you know nothing about by looking at them. Smile at people, be kind to people, and find ways to make things better!<br />
<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com1tag:blogger.com,1999:blog-5189913051878988200.post-44238065666049135632013-08-29T18:55:00.001-07:002013-08-29T18:55:37.325-07:00Back to School <div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTQ9Bir9LTL3e6ZHoktvOiDZu-nXBVrUE92c9GzM0bpDpogXpBoIDPP4XkArwK4ZQoqnkpdA3hsVD61_saxJz8Nn7xlOuqRxfMGzWjtDLDYCdWCvTUGwiyn955mLqppSQJc5w02PHPxXM/s1600/beginning+of+school+2013+037.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTQ9Bir9LTL3e6ZHoktvOiDZu-nXBVrUE92c9GzM0bpDpogXpBoIDPP4XkArwK4ZQoqnkpdA3hsVD61_saxJz8Nn7xlOuqRxfMGzWjtDLDYCdWCvTUGwiyn955mLqppSQJc5w02PHPxXM/s1600/beginning+of+school+2013+037.JPG" height="320" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidO8ZYN0VFGjTlwYvO3oO8xGkVdBFXw-dF3PpoO8b9H-9vNzFpjKI9FXl1x_p-2wOtJaQuTJuSWjkkdi0Ck8O1v0Fht_FYG2CQWwxxNjWAJLDQY3RGoH1xDO5RvsDyAlv4XbWHrvLz9Lw/s1600/beginning+of+school+2013+026.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidO8ZYN0VFGjTlwYvO3oO8xGkVdBFXw-dF3PpoO8b9H-9vNzFpjKI9FXl1x_p-2wOtJaQuTJuSWjkkdi0Ck8O1v0Fht_FYG2CQWwxxNjWAJLDQY3RGoH1xDO5RvsDyAlv4XbWHrvLz9Lw/s1600/beginning+of+school+2013+026.JPG" height="320" width="240" /></a></div>
Today was the first day of school here. Molly embarked on her first day of Third Grade, Kennedy confidently entered the realms of Kindergarten, and Zoey enjoy 2.5 hours of being the only child (half of which she spent n her crib!). And Mommy, well Mommy spent equal amounts of the day worrying, preparing, and wondering and a few minutes sitting down and having grown-up time (something that has not existed this summer at all!). As Molly proclaimed when she woke up, "Today is a Big DAY!" - it certainly was - and they showed every bit of the emotions from today in their tired little faces this evening. And although, Molly is still awake, picking at every scab and fingernail she can find - I'm hoping to see the anxiety leave her soon so she can rest that precious brain of hers before tomorrow's BIG DAY!<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAhOKeaEdgmHt_VQMjO0f8R993RYbGCSGjfJ2BF91Ei4UJMGIn-82d_M_XIx0kc6ldbkmWiRlkZK6-L2uMKgn-n9jrxaRgc3m59XyPxqcRg_WnehLsZbJAelWkxCPnw7VSP9kPgiqoncw/s1600/beginning+of+school+2013+041.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAhOKeaEdgmHt_VQMjO0f8R993RYbGCSGjfJ2BF91Ei4UJMGIn-82d_M_XIx0kc6ldbkmWiRlkZK6-L2uMKgn-n9jrxaRgc3m59XyPxqcRg_WnehLsZbJAelWkxCPnw7VSP9kPgiqoncw/s1600/beginning+of+school+2013+041.JPG" height="200" width="150" /></a></div>
<div>
The start of the school year is always met with such a mix of emotions for me. As a former teacher, I used to relish every minute of my unscheduled time. Now, granted, there was only one summer I didn't work or have a kid and it was the summer we got married - so it was still super busy - but it was a blissful summer! Now as a parent, I both relish my undisturbed and unstructured time with the kids and count down the days until they are back in the routines schools require. Then there is the planning that goes into sending a medically needy child into someone else's care for 6+ hours. And of course there is the worrying that goes into not having said child in my sights all day, as I have all summer. Unfortunately it was a very tough summer for Molly. She was sick, lethargic and went to doctor's appointments or therapy appointments 2-3 times a week. So, leaving her today was hard. I thank God every day she has an amazing para with her 1:1, keeping tabs on her and making sure she stays safe. </div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeEOLcOGpNFTAQgxK2p7swNcgpEHnKWstxJqSC5nz6Q7KmsjfAfVTkqph9AL1DvvuezrS_sETJBBJpBMIQOvtw-EJw4B7qriw8664R__KorCiXUX0pA4F5A4fKqjJW4OgKBrsWsz7d6LA/s1600/beginning+of+school+2013+049.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeEOLcOGpNFTAQgxK2p7swNcgpEHnKWstxJqSC5nz6Q7KmsjfAfVTkqph9AL1DvvuezrS_sETJBBJpBMIQOvtw-EJw4B7qriw8664R__KorCiXUX0pA4F5A4fKqjJW4OgKBrsWsz7d6LA/s1600/beginning+of+school+2013+049.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Molly & her beautiful Para Linda</td></tr>
</tbody></table>
<div>
<br /></div>
<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBIXFcIwG6OEPZSzWj63jRT9wgeeHWGR2NSEHnxjB7Trbvq7Rsh12FS-C98lQv5tFWERLWOv7yTtdg4oJl4smchcAgV5mAsfo1NWL362pTMilumOk5i-ufVdLIDEFvOkO0H8gdHvBeOKQ/s1600/beginning+of+school+2013+068.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBIXFcIwG6OEPZSzWj63jRT9wgeeHWGR2NSEHnxjB7Trbvq7Rsh12FS-C98lQv5tFWERLWOv7yTtdg4oJl4smchcAgV5mAsfo1NWL362pTMilumOk5i-ufVdLIDEFvOkO0H8gdHvBeOKQ/s1600/beginning+of+school+2013+068.JPG" height="200" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-JZiFLNHYw85HIymD5gpnl3kVW_cXn-vmgw99_CwqOV95H0SWZhHaFGCCUQHvuvEGBNUQcL7DWjhbH2nZszskzU2ZJ9NDA_vSibMkSX47BO8IEC-phx28HGtE7Z-UfrFJuxcOHybUTPY/s1600/beginning+of+school+2013+050.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-JZiFLNHYw85HIymD5gpnl3kVW_cXn-vmgw99_CwqOV95H0SWZhHaFGCCUQHvuvEGBNUQcL7DWjhbH2nZszskzU2ZJ9NDA_vSibMkSX47BO8IEC-phx28HGtE7Z-UfrFJuxcOHybUTPY/s1600/beginning+of+school+2013+050.JPG" height="200" width="150" /></a>I think it's normal for parents to worry about their kids when they go to school. Heck, in this day and age, we'd be almost callous not to. But, when you have a child with special needs or a challenging medical picture - it's easy to be consumed by the worry. I didn't realize how much I was worrying about Molly until I dropped Kennedy off today without hesitation or worry, but couldn't let the nagging worry I had for Molly go. I can tell myself all the time that she will be fine, but I've seen her not fine so much lately that it's hard to let it go. </div>
<div>
<br /></div>
<div>
So, I did what I do best. I organized and I prepped and I made sure everything was in order so that if anything unexpected came up, we'd be ready to roll! I got all Molly's meds together, all the paperwork that goes along with them, Kennedy's updated medical form with her recently acquired immunizations marked and dated, all of Molly and Kennedy's school supplies, and Molly's completed summer packet. Then there was adjusting Molly's meal intake to correspond to the later lunch schedule that 3rd grade brought on. I made her Modified Atkins Lunch and double morning snacks. I got both their water bottles ready and Kennedy's snack too. Everything was nice and lined up. Their first day of school outfits were laid out as well as their new shoes from Goomie. They got up and I fixed their hair. Chris helped me make breakfast and by 8:40am we were on our way down to school.</div>
<div>
<br /></div>
<div>
The school is so great about working with us. They've given us a parking pass so Molly doesn't have to walk too far. They know us and help us with med drop off and disseminating very important information to Molly's ever growing team. They do their best to make me feel comfortable and safe about Molly being away from me. </div>
<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBT9YxRPmu5fRSsOUj9e3JvOWPRx7TQJRTHmYcGFgL2r-9RVVU3NZuqYjmEwOL3YnoqTDtI7gODjUKDpyqJ2v87v2SwRspclgePgxDJLp086UbtYw-siQwuR7KEnMD0MerRMYfv4FdzRc/s1600/beginning+of+school+2013+079.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBT9YxRPmu5fRSsOUj9e3JvOWPRx7TQJRTHmYcGFgL2r-9RVVU3NZuqYjmEwOL3YnoqTDtI7gODjUKDpyqJ2v87v2SwRspclgePgxDJLp086UbtYw-siQwuR7KEnMD0MerRMYfv4FdzRc/s1600/beginning+of+school+2013+079.JPG" height="320" width="240" /></a></div>
<div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9YxDcosddU2J7ua3pOiwK6hi6jp373QKK4FeitB8zqV0lsdGOBitRPNyP8XQraiBSWFjT9RkKb3sy1FvB9AErs1q9mlGER9TeedMIYImA5JJlppqtmnuZbB1oSAxFS5kF07DAke_-YMA/s1600/beginning+of+school+2013+070.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9YxDcosddU2J7ua3pOiwK6hi6jp373QKK4FeitB8zqV0lsdGOBitRPNyP8XQraiBSWFjT9RkKb3sy1FvB9AErs1q9mlGER9TeedMIYImA5JJlppqtmnuZbB1oSAxFS5kF07DAke_-YMA/s1600/beginning+of+school+2013+070.JPG" height="200" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkU4UJdp9k_3Eua-wYnPLy_RaRLcFPYBQIDjes_qcZ4Zu21WMSyWA28878aEX1pVpiu5_g1UeDgKbSxBlt5JWkpQ0ugWvUP0WvSmq0Gux92l1EV36R7WnubF1puYKaKqEu6-k5Yk6_kA4/s1600/beginning+of+school+2013+077.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkU4UJdp9k_3Eua-wYnPLy_RaRLcFPYBQIDjes_qcZ4Zu21WMSyWA28878aEX1pVpiu5_g1UeDgKbSxBlt5JWkpQ0ugWvUP0WvSmq0Gux92l1EV36R7WnubF1puYKaKqEu6-k5Yk6_kA4/s1600/beginning+of+school+2013+077.JPG" height="200" width="150" /></a>Bottom line is that I made it! Best news is that the kids made it too! As the school has been so understanding, I pick both girls up about 10 minutes early to avoid the insane chaos of the end of the day. I was standing by the main office as Molly came from Science Class back to her classroom. Her para, Linda, was holding her hand and Molly looked about ready to fall asleep. She fought back tears as she saw me. My big girl held it together all day and kept her emotions mostly in tact. When she walked in the door, she collapsed on the couch and just laid there for an hour - emotionally, mentally and physically drained. I guess it's good my other two buddies were there, or I probably would have just laid down next to her and snuggled her for the entire hour! </div>
<div>
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzEwTI45y0EVy2o9u3qPD3eTR1ajSwlLEX-Qh3WHaEg18FbYlyaXVNclzuKac70Vl5ieoI5AOCNvajN2-rQkWH2YMhsUbUVPDl5R8gqBLVFteBmSSw4ATyAEYYXvu8RtnV4KT1fV1FQLg/s1600/beginning+of+school+2013+083.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzEwTI45y0EVy2o9u3qPD3eTR1ajSwlLEX-Qh3WHaEg18FbYlyaXVNclzuKac70Vl5ieoI5AOCNvajN2-rQkWH2YMhsUbUVPDl5R8gqBLVFteBmSSw4ATyAEYYXvu8RtnV4KT1fV1FQLg/s1600/beginning+of+school+2013+083.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">so tired after a full day back!</td></tr>
</tbody></table>
<div>
I was thrilled to hear Kennedy chat contentedly about being a Kindergartner. She talked about all the teachers that came into her room, all the kids, the fun things they did. It was hard to keep up with her and it was a welcomed reaction from the grilling I usually have to give Molly about her day! I was so proud of Kennedy. She smiled, laughed and walked like such a big girl into her first day of school. Today was truly the first day of Keddy's educational career - one that will be as big as she can dream! School is where I found my love of music, reading, math, and teaching and I hope that my girls can stumble upon just as many amazing educational discoveries! </div>
<div>
<br /></div>
<div>
Everyday I kiss them goodbye and send them off to the care of their amazing teachers, I am putting complete trust and faith in those teachers hands and in the school. It's harder then I ever imagined, but I know the girls are getting so much out of their time in school that I suck it up each day and try to keep the nagging worry in the back of my head.<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
</div>
Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com1tag:blogger.com,1999:blog-5189913051878988200.post-84990164717698022342013-08-26T11:14:00.003-07:002013-08-26T11:14:39.626-07:00vacation with kidsI want to be upfront when I start this blog, under no circumstances did Chris or I expect to RELAX on this vacation. We knew it would be pretty much non-stop with our 3 kids plus a handful more, and we were quite honestly, perfectly fine with that. You see, after all these years, we just cherish the time we get to be all together. I know they say parents need their alone time, and I agree we do, but when time together is a precious commodity, you have to prioritize and we rank being all together at the top of that list.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgDjRT5AaObAuX_jp0WMlaAwD0NCtgUqWGh26KBgHivGOHuXbszipftFojSVd9vYIZ4sMj8ygOkzsb6ISrkW02Qtw4OszKUMBTNCkixwugvXtBaP07OFuS61vCe31_iytV7vzrBpRJIi0/s1600/myrtle+beach+2013+190.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgDjRT5AaObAuX_jp0WMlaAwD0NCtgUqWGh26KBgHivGOHuXbszipftFojSVd9vYIZ4sMj8ygOkzsb6ISrkW02Qtw4OszKUMBTNCkixwugvXtBaP07OFuS61vCe31_iytV7vzrBpRJIi0/s1600/myrtle+beach+2013+190.JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Packed and ready to go!</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4yOQk232QmXgaJplxExrxOsAJ7uUAjvRHW82CEfVrqFlND788xhIAJy6hBT7_31Vt7YZryzr7WKLylV731FfB1I7AHKFNPcGVuGneziR4w_q-z2a6sOZtyxqdqNreqhRpLmU_rnBBXaU/s1600/myrtle+beach+2013+204.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4yOQk232QmXgaJplxExrxOsAJ7uUAjvRHW82CEfVrqFlND788xhIAJy6hBT7_31Vt7YZryzr7WKLylV731FfB1I7AHKFNPcGVuGneziR4w_q-z2a6sOZtyxqdqNreqhRpLmU_rnBBXaU/s1600/myrtle+beach+2013+204.JPG" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">and the kids fit!</td></tr>
</tbody></table>
That being said, when we said we wanted to be all together I don't think either of us meant 15 hours each way in the car! Really, the car trip would have been no big deal had the states of CT, NJ, MD, DE, and VA actually cooperated and kept all other drivers off the road and cancelled road construction when the Renz Family was travelling! It also would have been easier if Zoey didn't vehemently object to being in the car. She was ticked off, and she was making sure we all knew it and we were feeling it. Molly was a gem, tucked in the back seat only asking us what time it was every 15 minutes and Kennedy did great thanks to our new friend - Children's Dramamine. But boy, does it take a lot to travel 750 miles away from home with 3 kids. Our mini-van was packed to the gills and we were thanking God for the Dodge coming with under-seat storage. Because, when you rent a house and don't want to pay extra to rent EVERYTHING, you must bring it all. That meant linens, a pack and play, a booster chair, cooking supplies, sand toys, beach supplies, pool supplies, clothing, cleaning supplies and special dietary food you aren't sure you can get somewhere else. Oh and of course the GIANT bin of Meds and Molly's push-chair and Zoey's stroller - not small stuff!<br />
<br />
But, we got there and we were able to visit with wonderful friends who moved to Myrtle Beach while we waited for our house to be ready. The kids all got to stretch their legs and fill their bellies and get excited about being on vacation. But, it was go-time from the minute we pulled out of the driveway on Friday August 17th at 10:15pm until we pulled back in on Saturday August 24th at 11:30pm. We played, we swam, we boogie boarded, we laughed, we explored, we hugged and we had a great time!<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUpbP5wXRY_NbI1Eiq4Y3yl9aS2Bt0uGAQdPr5mO_LeTT6gf6M_j_aqcjFAkj1_v3-y1-23Oww6DxVr1N57kvB_CO7em10zwhZ7bdTXeXW0O3lub13IQu1RfALtVZyTkr2raQISgkWXbI/s1600/myrtle+beach+2013+223.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUpbP5wXRY_NbI1Eiq4Y3yl9aS2Bt0uGAQdPr5mO_LeTT6gf6M_j_aqcjFAkj1_v3-y1-23Oww6DxVr1N57kvB_CO7em10zwhZ7bdTXeXW0O3lub13IQu1RfALtVZyTkr2raQISgkWXbI/s1600/myrtle+beach+2013+223.JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">totally done with the car!</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwYB4b2CXfiKEZjTtQ7sdViR9Aztc_AJZL65RewNK-qC-RNVsCb6xdd4W141OwheDQdU-Xy7g14ytdBL1nyEZnZit0-8EF_KQJVBQ2m-TZz8yRluOWfEL1iBrG43LtiELjdTv2k88ZGb4/s1600/myrtle+beach+2013+213.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwYB4b2CXfiKEZjTtQ7sdViR9Aztc_AJZL65RewNK-qC-RNVsCb6xdd4W141OwheDQdU-Xy7g14ytdBL1nyEZnZit0-8EF_KQJVBQ2m-TZz8yRluOWfEL1iBrG43LtiELjdTv2k88ZGb4/s1600/myrtle+beach+2013+213.JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">not happy</td></tr>
</tbody></table>
Chris and I learned a few things. Our kids are not ready to make long car trips - or maybe we aren't ready to make any more car trips. The baby cage that could turn into a baby gate was worth every penny when we went out to buy it after being in the house for less then 24 hours as someone rescued Zoey from the giant staircases for the umpteenth time. We learned that we love that our kids have their own rooms (well sort of), it was nice to be able to keep an eye on them and hear them sleep, but we would rather do it on the monitors and allow them to make their restless sleeping noises without waking each other up. We learned three was and is the magic number for us - it was great having more kids there so Kennedy had playmates all week, but it was a whole new perspective herding more then the 3 that we are used to herding. We also discovered how wonderful it is to have grown-up time. Chris referred to it as the detox portion of the night, where we could play a non-Candyland type games, speak about topics beyond Disney Junior and diapers, and actually sit down! Of course, Zoey knew this was "our time" and she wanted a part of it 3 out of 7 nights - but, that's ok.<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkSjhOSj68CbK_Q-UQl0Yi98KmxQKvHrA0eyj9yd81zyB7WgZWWLb7FfOR8ZeFVetQiO-E2H7d_8AmUoa8Ua_84quNf4quIkhsGhgUqu2zr9Qj4aXXPR1lzDxt_ZDeV2IiYvbSxvEpJk4/s1600/myrtle+beach+2013+313.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkSjhOSj68CbK_Q-UQl0Yi98KmxQKvHrA0eyj9yd81zyB7WgZWWLb7FfOR8ZeFVetQiO-E2H7d_8AmUoa8Ua_84quNf4quIkhsGhgUqu2zr9Qj4aXXPR1lzDxt_ZDeV2IiYvbSxvEpJk4/s1600/myrtle+beach+2013+313.JPG" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">grown up games!!</td></tr>
</tbody></table>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglTth-obQ6m-xd_0Z6K9LyfWA43Z_1etq7kL4Y5RHNCkgfM3S1yRL6uqJNasojRkOw00m6M8MRtYhQA3saB0TyKLxqcsrhdh0CyeOlvZQ22nKsqCyT0msymQNaMYCnAbpHSzhQIhQPRIA/s1600/myrtle+beach+2013+314.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglTth-obQ6m-xd_0Z6K9LyfWA43Z_1etq7kL4Y5RHNCkgfM3S1yRL6uqJNasojRkOw00m6M8MRtYhQA3saB0TyKLxqcsrhdh0CyeOlvZQ22nKsqCyT0msymQNaMYCnAbpHSzhQIhQPRIA/s1600/myrtle+beach+2013+314.JPG" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">no kids awake, and he's asleep...</td></tr>
</tbody></table>
One thing I made sure to keep telling myself, especially when I started getting frustrated when someone was crying again or when I was dragging someone else back through the current because they couldn't seem to pay attention at the beach or when I was cautioning someone else to stop jumping for the thousandth time; was that there were plenty of parents out there wishing they could have those experiences just one more time. That there was a mom out there sitting next to her son's hospital bed, willing him to start screaming and wishing she was rocking him to sleep. Each day truly is a gift, and we considered this vacation to be winning the lottery. We got over a week of precious time to spend with our three favorite little people on the planet. We saw a million smiles, heard a million giggles, watched discoveries, got hugs and kisses and snuggles, and just spent time together. That's not to say our life is sunshine and fluffy clouds, but life is how you look at it and it's what you make of it.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx5E7fyBu_x6IO4_BMe89HB2Eu8-Oa8qA_pzLtWt81Tnvk6qyl7kAVOSMGJy4vVO6cnk3eWs0_7skAnUHYIfsX_CPGzJMZSi66cNOCya0IeAxoRhYpYWg6nj3sgN3W9Zo3iI4Qohyphenhyphen9QAI/s1600/myrtle+beach+2013+325.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx5E7fyBu_x6IO4_BMe89HB2Eu8-Oa8qA_pzLtWt81Tnvk6qyl7kAVOSMGJy4vVO6cnk3eWs0_7skAnUHYIfsX_CPGzJMZSi66cNOCya0IeAxoRhYpYWg6nj3sgN3W9Zo3iI4Qohyphenhyphen9QAI/s1600/myrtle+beach+2013+325.JPG" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">pool time with the kids</td></tr>
</tbody></table>
In addition to our family unit of 5, we spent a week with people who are like family. They are some of the best friends we have ever had and are important parts of our lives. They understand that our life is in constant flux depending on what Molly is doing or how she's feeling. They pitched in without being asked and the girls LOVED all the attention. It was just a wonderful experience and an amazing group of people who I am eternally grateful to have in my life!<br />
<br />
You know, the issues we battle at home, followed us on vacation, but just like a home we tried really hard not to get hung up on them. Did it mean we skipped the water park? Yes. Did it mean we used Molly's push chair everywhere we went? Yes. But did we have fun no matter what? We sure did!<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnUcFM40QvjBiNr4dCsWq0GjCQWUTAyGwo6f_3B4SyDKTpfzMqGZJZbzygM0jierV8LLGjBlSf9TmC2TE1oYwX8oger4p7OTy9v7LEorwT_fJr_ZYmSL-saiqCA3VFr_cpektPJpEdpAw/s1600/myrtle+beach+2013+415.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnUcFM40QvjBiNr4dCsWq0GjCQWUTAyGwo6f_3B4SyDKTpfzMqGZJZbzygM0jierV8LLGjBlSf9TmC2TE1oYwX8oger4p7OTy9v7LEorwT_fJr_ZYmSL-saiqCA3VFr_cpektPJpEdpAw/s1600/myrtle+beach+2013+415.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is the heart of my world</td></tr>
</tbody></table>
And now, we're home. The laundry is all done, and almost all put away. Chris is back to work, the girls are back to fighting as only siblings can, AND they are back to sleeping in their own beds. I am back to my role as I am waiting for a call from the doctor regarding abnormal results on Molly's pre-vacation blood work and doing my very best not to worry and to prep 2 little girls who start a new school year on Thursday. Real life is back in full force!<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3t9sx3Q9brVW6_KykfjMOIHWRDu2g2OX97SUDXdQbrSG67N3q0x5H9vgVFoxY8xWyF7cvR4OInGLaMSY0cz0hbpFGVvyP7QV6onRmxyFWNxzwkYnXZWt3b7XpYIYXP0wo9cBaZtDsLHs/s1600/myrtle+beach+2013+512.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3t9sx3Q9brVW6_KykfjMOIHWRDu2g2OX97SUDXdQbrSG67N3q0x5H9vgVFoxY8xWyF7cvR4OInGLaMSY0cz0hbpFGVvyP7QV6onRmxyFWNxzwkYnXZWt3b7XpYIYXP0wo9cBaZtDsLHs/s1600/myrtle+beach+2013+512.JPG" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">See - smiles & giggles!</td></tr>
</tbody></table>
<br />
So, while vacation with kids is not about sitting in lounge chairs sipping adult beverages, it's still one of the most rewarding times we get as a family. I do get that we need us time and I need me time, but the girls are only these ages for so long and I've seen way to much loss lately - so I choose to cherish these days as a family and enjoy our vacations together! I hope everyone else got to make happy memories this summer as well!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdrnuiumNjF_64jOapqIoU_J_aIC0NPnQidZIBVCZmz2xx9lM2sVgB9W4BFBSC0expSv6EKtpbG2ka80aS5zlnJpsV0kBBi5KWURRJX7feznfxsWG42aIYLA4JTwtFjjDm-aRia9abGBk/s1600/myrtle+beach+2013+529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdrnuiumNjF_64jOapqIoU_J_aIC0NPnQidZIBVCZmz2xx9lM2sVgB9W4BFBSC0expSv6EKtpbG2ka80aS5zlnJpsV0kBBi5KWURRJX7feznfxsWG42aIYLA4JTwtFjjDm-aRia9abGBk/s1600/myrtle+beach+2013+529.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">What a way to end a trip - no pants and a bag of chips!</td></tr>
</tbody></table>
<br />
<br />
<br />
<br />
<br />
<br />
<br />Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com0tag:blogger.com,1999:blog-5189913051878988200.post-9966862017803342182013-08-14T12:23:00.002-07:002013-08-14T12:23:38.975-07:00The Sibling Effect<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiijjKoejqn4u-TkpMRSv2pJpu8ezVCahhlslsT6HB20OW6oyO1zNmwTsXfAE0JVaAhFHWbah6KEtnJS91sc-GzsUveUpmrXV__RtdVP1MyoQOEiAJILadIpbLTdP0Um1ime8mnbq4gIw/s1600/keddy+water.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiijjKoejqn4u-TkpMRSv2pJpu8ezVCahhlslsT6HB20OW6oyO1zNmwTsXfAE0JVaAhFHWbah6KEtnJS91sc-GzsUveUpmrXV__RtdVP1MyoQOEiAJILadIpbLTdP0Um1ime8mnbq4gIw/s1600/keddy+water.JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Feisty Girl</td></tr>
</tbody></table>
I have been getting extremely frustrated with my 2nd born lately. She's 40 inches of pure precociousness and every bit as feisty. She's affectionately referred to as TURBO or BIG TROUBLE and when she's being sweet, she's our Keddy-Bear. We've tried rewards, we've tried consequences, we've tried kindness and sternness and it doesn't seem to make a change in her behavior for more the 5 minutes at a clip. I find myself being short tempered and extremely impatient with a 4 year old and then I get mad at myself for losing it with said 4 year old! So, I took a step back, and tried to perceive our life through her eyes and not my own. What I found was both comforting and eye-opening at the same time.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8Hi-pDKlQTshgc8l6xhy1AQi-xdmwluDNsoeus554KOB3Os7OH2YsTV3vI8UFbd8YZgpktwfpP1B3ZzWMgd_hM2voFa7jowqkIUfEo9-nnBuWlAcE_zH55wmXu-oZKMRLgmLF-MHxQ6w/s1600/photo+(4).JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8Hi-pDKlQTshgc8l6xhy1AQi-xdmwluDNsoeus554KOB3Os7OH2YsTV3vI8UFbd8YZgpktwfpP1B3ZzWMgd_hM2voFa7jowqkIUfEo9-nnBuWlAcE_zH55wmXu-oZKMRLgmLF-MHxQ6w/s1600/photo+(4).JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">They really are best friends</td></tr>
</tbody></table>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiijjKoejqn4u-TkpMRSv2pJpu8ezVCahhlslsT6HB20OW6oyO1zNmwTsXfAE0JVaAhFHWbah6KEtnJS91sc-GzsUveUpmrXV__RtdVP1MyoQOEiAJILadIpbLTdP0Um1ime8mnbq4gIw/s1600/keddy+water.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a>Kennedy is our middle child. Her older sister is 7.5 years old, but functions at about the 4 year old level in a lot of ways. Molly cannot dress herself most days, she cannot shower herself or properly clean herself; bottom line is that she needs A LOT of assistance throughout the entire day. Kennedy's younger sister is almost 15 months and she cannot do anything for herself yet. She needs to be changed, be fed, be bathed and be babied, because SHE'S A BABY. So that leaves Kennedy assuming a lot of responsibility. We expect her to dress herself, to take herself to the bathroom, to help set and clear the table, to clean up her toys and to help her sisters with the things they are unable to do. It totally makes sense to me as the parent and adult. The one who can do, should do and the ones who can't get more help. I looked at this through Kennedy's eyes though, and what I saw was my sisters getting a lot more attention for day to day tasks, being praised when they pulled their pants up or followed a simple command. What I saw was if I refused to do things or cried about them, Mommy and Daddy would sweep in and help - or would they? There was not clear boundaries for what Kennedy can expect from Chris or I. Sometimes we help her, sometimes we make her do it herself - she has no idea what to expect, and so she pushes limits and forces our hand. Something to consciously work on, it wont' be easy, but we can fix it.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAnFUlaPsgUXHq87Ul8W_ZaIptSMe64B1o70GrIohzTalgk57QlBmbaowJmY_0nNZS8r7HaaU_JtFZqHwSPGYtdCMrFHRcPIW9UmDBs9WzT5AxiXPkSPfmPiRBAuSK557I5cg_cKNUAtc/s1600/photo+(3).JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAnFUlaPsgUXHq87Ul8W_ZaIptSMe64B1o70GrIohzTalgk57QlBmbaowJmY_0nNZS8r7HaaU_JtFZqHwSPGYtdCMrFHRcPIW9UmDBs9WzT5AxiXPkSPfmPiRBAuSK557I5cg_cKNUAtc/s1600/photo+(3).JPG" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting for Molly again</td></tr>
</tbody></table>
And so my observing continued. Molly has autism as one of her lengthy list of diagnoses. This leaves her unable to play easily with others and often times just playing inside her head. Kennedy will often say to her, "Oh Molly - you're in your own world again". These times, I think - wow, she really gets it. But then seconds later, the Molly, MOOOOLLLY, MOOOOOOOOLLLLLLLYYYYYYY begins and I realize, she just wants her sister to play with her. Kennedy is searching for a way to connect with Molly and just finding road blocks. The game that engaged Molly yesterday, is met with defiance and tears the next day. I know that feeling, I carry it with me as a parent. But, to be 4 years old, learning the ins and outs of social protocol yourself and have to navigate the dramatic responses of someone you've known your whole life, it's a heavy burden and one we need to help Kennedy with more.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghZSVxB9wzaDtb44MsUkIK6y4T1k9dEEqReVmF5x4SOK8VARg3gKeWsnE9PJO2CZYN0BrYv4ElZHvXP7VA7HgCu8wY3_ez2WzizPgHsujXVYEitROtsBp3N8P8TfcB-ojQhysn6obIOpg/s1600/waiting+for+the+car.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghZSVxB9wzaDtb44MsUkIK6y4T1k9dEEqReVmF5x4SOK8VARg3gKeWsnE9PJO2CZYN0BrYv4ElZHvXP7VA7HgCu8wY3_ez2WzizPgHsujXVYEitROtsBp3N8P8TfcB-ojQhysn6obIOpg/s1600/waiting+for+the+car.JPG" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Another appointment, waiting for the car</td></tr>
</tbody></table>
It's been a long summer of doctor appointments and therapies in our house, most times 2 or 3 a week, sometimes more. Most of them for Molly, who's been struggling with an unknown illness on top of her current issues and Kennedy has either been dragged along or left with family members. She has gotten very little time at playgrounds, beaches, swimming pools, at friend's houses. Molly hasn't felt well enough most of the summer to go outside, and so Kennedy has to make due. Kennedy's also begun to vocalize that she doesn't want to do these things alone, not understanding that Molly cannot do them. I'm excited to go to Myrtle Beach with friends and my husband and other kids, because if Molly isn't up to doing things - Kennedy still can. I'm also happy to see the return of the school year. There will be much needed structure for Molly and a whole 3 hours in the morning that are just me with Keddy and Zoey.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiWHKPmhfdpqQyvkfSDwjhSd9RFO5pMLXRRrfjx9YPuS9y2TyzdSYtPdMPdmHdgyUC9R6cx8wm3ODYHo-XOpBIYLkQdVzBqtCFyew8B2JFWPnVW1hHOXg8o0dDIILvrsage1uxRGiKB1c/s1600/ked+beach.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiWHKPmhfdpqQyvkfSDwjhSd9RFO5pMLXRRrfjx9YPuS9y2TyzdSYtPdMPdmHdgyUC9R6cx8wm3ODYHo-XOpBIYLkQdVzBqtCFyew8B2JFWPnVW1hHOXg8o0dDIILvrsage1uxRGiKB1c/s1600/ked+beach.JPG" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">alone time at the beach with Mom</td></tr>
</tbody></table>
I know parenting is difficult. There are choices to make, there are paths to lead them along and there are lessons to be learned by them and us. But, this feels tricky. With Molly, I'm worried constantly. Being her Mom is almost equated with being her nurse and her counselor. There is a lot of hands on stuff needed for Molly and it does take a lot of energy, focus and time. With Zoey, she's a baby - so everything is exciting and special. Each new word or sign, each new thing she does - it's worth rejoicing. And with Kennedy, I feel like a life guard, constantly watching her to make sure she doesn't go too far and hurt herself. Constantly trying to help her express her emotions through language and not whining. And constantly reminding myself that she is only 4.5 years old.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_o3o87FbX3dwxjr0JJj8Tg6WBQILvqlVM5Dh5KS-oBNZdJvmcteeFY88rPoMHk5Rq9TCr0pe4gxMk5u905jDPDELQMbYIBtFVr0xCqGY211qO8YgecypSlPhu1p5D9M-mLpjl69glEyc/s1600/cute+keddy.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_o3o87FbX3dwxjr0JJj8Tg6WBQILvqlVM5Dh5KS-oBNZdJvmcteeFY88rPoMHk5Rq9TCr0pe4gxMk5u905jDPDELQMbYIBtFVr0xCqGY211qO8YgecypSlPhu1p5D9M-mLpjl69glEyc/s1600/cute+keddy.JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sassy girl - all of 4.5!</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0_ebDzVVlndUwFtS0z1DH71wGtTeu_xMeIZ3jqhGZ4AteYwpZLRVQ2Ck_xN282_H_X-h2eVQRH3qRjCvOanxB006VxXb-PbGYuGY03eNmqcRfX7-u4iXEAm57hfTT6JolH5SQ02uvc7g/s1600/mom+&+ked.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0_ebDzVVlndUwFtS0z1DH71wGtTeu_xMeIZ3jqhGZ4AteYwpZLRVQ2Ck_xN282_H_X-h2eVQRH3qRjCvOanxB006VxXb-PbGYuGY03eNmqcRfX7-u4iXEAm57hfTT6JolH5SQ02uvc7g/s1600/mom+&+ked.JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">her favorite place - Mommy's lap!</td></tr>
</tbody></table>
I see her seeking attention; she was singing to herself the other day, and when I didn't react, she says, "I'm in my world today, this is Kennedy's world". I see the frustrations as she screams, whines or cries the minute she's told "No". But I also see the love she has and the admiration as she tells people her sisters name, and as she proudly walks beside Molly's stroller - not even noticing the looks we are getting. Really, I think the weight she carries on her shoulders was made clear to me, when she hugged Molly as we hurried off to the hospital one night and said "be ok, I love you". And so, I know she has been made a better person for having a sibling with such specific and special needs and I know she will do wonderful things with her life. But, I must remember that she needs us as much, if not more then her sisters, because she is special too - in a different way, but definitely special!.<br />
<br />
<br />
<br />
<br />
<br />
<!-- Blogger automated replacement: "https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F4.bp.blogspot.com%2F-dytZvqSc2Rk%2FUgvXnAP0X2I%2FAAAAAAAAAY0%2FRF8wHbF0gcs%2Fs1600%2Fkeddy%2Bwater.JPG&container=blogger&gadget=a&rewriteMime=image%2F*" with "https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiijjKoejqn4u-TkpMRSv2pJpu8ezVCahhlslsT6HB20OW6oyO1zNmwTsXfAE0JVaAhFHWbah6KEtnJS91sc-GzsUveUpmrXV__RtdVP1MyoQOEiAJILadIpbLTdP0Um1ime8mnbq4gIw/s1600/keddy+water.JPG" --><!-- Blogger automated replacement: "https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiijjKoejqn4u-TkpMRSv2pJpu8ezVCahhlslsT6HB20OW6oyO1zNmwTsXfAE0JVaAhFHWbah6KEtnJS91sc-GzsUveUpmrXV__RtdVP1MyoQOEiAJILadIpbLTdP0Um1ime8mnbq4gIw/s1600/keddy+water.JPG" with "https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiijjKoejqn4u-TkpMRSv2pJpu8ezVCahhlslsT6HB20OW6oyO1zNmwTsXfAE0JVaAhFHWbah6KEtnJS91sc-GzsUveUpmrXV__RtdVP1MyoQOEiAJILadIpbLTdP0Um1ime8mnbq4gIw/s1600/keddy+water.JPG" -->Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com1tag:blogger.com,1999:blog-5189913051878988200.post-30290345659947306502013-07-30T18:57:00.000-07:002013-07-30T18:57:03.080-07:00The Molly Renz SymposiumIn my perfect world, located deep in my imagination, I have gathered every single one of Molly's specialists in one room and they are discussing and working together to figure out what the heck is going on with my special little girl. In the real world, this symposium occurs in my mind alone as I make the phone calls and emails and doctor's appointments.<br />
<br />
Molly's path has had a lot of ups and down. However, she's been struggling for a while now, seeming to be fatigued and lethargic a lot of the time. She appears tired, uninterested, and sick without an acute illness. Back in the middle of June, Molly seemed to be ill. She initially complained of acute belly pain, for which we took her to her pediatrician. Her rapid strep test was positive and we began treating her with antibiotics. She appeared to be getting worse. She was very tired, she started complaining of a sore throat and she just didn't feel good. We changed antibiotics and then we did some lab work. This began on a Friday night and continued until a Wednesday when we ran some labs and found out she didn't actually have strep at all.<br />
<br />
It was then the 4th of July and we went to my parent's house for a day of swimming and relaxing. It was just the five of us and the two of them. A quiet day by all accounts. Molly seemed to be having a great time. Then, out of nowhere, she just started sobbing, while in the pool. She was making no sense. We pulled her out of the pool and held her on our laps until the episode passed, which it did. She was very zoned out by this time and shakily made it down the stairs. She then attempted to take a step up to go change and fell twice in the attempt. Her body seemed to just crumple under her. The next day, I emailed her Boston team, but given the holiday weekend, the email went to the on-call provider, who as appropriately concerned and sent us to the local Emergency Room.<br />
<br />
We had her evaluated and she had multiple elongated absence type seizures while we were there. It also took them five sticks to get an IV in her because she was so cold - an unusual symptom for her. They decided she had a seizure and sent us home. Apparently there was a mis-communication somewhere along the way and Molly should have been admitted for monitoring.<br />
<br />
So, we called, we worked the schedule, we took Zoey in for her Ear Tube and Adenoid surgery and then had Molly admitted that following Friday, July 12th for continuous EEG monitoring. She had some episodes, but apparently they didn't register as seizures. They told us she had diffuse slowing - we're still working on getting the EEG read a 2nd time. Regardless, Molly seemed tired but very content in the hospital.<br />
<br />
We came home from the hospital and Molly just seemed to go downhill. She appeared increasingly fatigued and I would even qualify it as lethargic. She doesn't want to go outside, she doesn't want to swim, she just wants to lie on the couch and color. She cries for no reason, she gets really scared for no reason, she's not herself and it's breaking our hearts.<br />
<br />
She had some more concerning episodes. One where she just suddenly fell out of a chair, whacking her elbow and sending us back to the Emergency Room, where we were again told she needs a specialist - they just don't specify which one! Then there was some drooling with confused talking and slurred speech with unresponsive pupils. There's a lot of little bits and pieces.<br />
<br />
So, we started the route of doctor's appointments.<br />
The Developmental Pediatrician down here thinks she's depressed and her anxiety needs to be controlled. They have not laid eyes on her. They say weekly talk therapy sessions.<br />
<br />
The Developmental Behavioralist in Boston, who also didn't see her, thinks she needs intensive autism specific therapy, like really seriously intensive.<br />
<br />
The Yale neuro thinks there is definitely some over-arching genetic disorder that we still haven't put together yet.<br />
<br />
We saw Our top specialist today, epilepsy at Boston. She feels that Molly is actually neurologically the same and somewhat stable. She is concerned and acknowledges that she seems to be in a slump. The theory is that a little virus back in June, totally through Molly completely out of whack and that the autism symptoms are what we're really seeing. She feels that we need to address what could be behavioral to truly understand what is behavioral and what is something more. She did note a change in Molly's gate and a new posturing of her left hand, but wants to see if this disappears when she comes back to baseline.<br />
<br />
We are seeing the sleep specialist next week. We are trying to get in with our pediatrician to help us put this big picture together and help us make sure we aren't missing something. We are working on an endocrinologist to see if any of it is hormonal.<br />
<br />
My poor Molly. I feel for her. She has the biggest imagination and talks about all these things she wants to do, but she then doesn't have the energy to do anything. Her lung function is down, per the pulmonologist. She has some sort of confusing central sleep apnea. Her EEG was abnormal, her blood work appears dehydrated - but she's clearly not. She's fatigued, she complains of various ailments. And here I sit as Mom, unsure if I should hug her and comfort her as she cries her eyes out - or if I'm to treat it as a behavior and ignore it.<br />
<br />
We worked to get ABA for Molly. This is in home behavioral therapy. Our insurance only covers limited providers, so we went with who we had to. The organization we are working with cannot find a provider in our area and so they want to train us to do it ourselves - but this is so emotional and too hard to decipher what we should do. SO - we'll fight that fight. We'll fight the fight of mounting medical bills, because every appointment and every medication and every therapy comes with a co-pay.<br />
<br />
So, you can see why having all Molly's doctors in one room would make life so much easier. We are blessed to have some pretty incredible doctors on her team, but when you parent a special needs child, you must constantly push. You must think outside the box, you can never settle.<br />
<br />
I try to remain positive with Molly. She wakes up every morning. She smiles at me most mornings, she hugs me and she can say "I love you Mommy". It's hard to separate how worried you are with what is really happening. And I am forced to take a step back and reflect on what I'm truly worried about. Yes, I'm worried we could lose her in her sleep; she certainly has enough issues and that worry has been addressed. Yes, I'm worried that I won't be able to protect her from hurt, because Molly is a sweetie who loves with her whole heart and doesn't understand a world that is unkind. I'm truly not worried what people think of her or of us, I know who we are - a family that works together to give our members every advantage possible. I think I'm truly worried that we're missing something, that something else is wrong. I think that's because Molly doesn't fit into any one category. She's a little bit of this and little bit of that with a dash of something else and a lot of curve-balls thrown in. We don't have a specific diagnosis and so we have no prognosis or course of treatment. We blindly pave the road ahead of us as we try to make the best decisions we are able to .<br />
<br />
We'll keep walking the road, and I'll try to keep this better updated. Chris and I so appreciate all the thoughts and prayers we've received. We are surrounded by a lot of love, and we can feel it. Thank you for carrying our special girl in your heart. She's truly a blessing.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT6RmjteC4Rn8Q-i-fIPFu6HenllRW4EQZ1HhXwIMF3YCtK6LnzBPWkTY3iss9UxpnZfpt4qSdpU7OEHdw5bYnS3K4SdCrLhqSf07i5E8K1ptJStXnBdsT9HYqIj3nHiZtEwQE4lFtkmA/s1600/family+6.2013.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT6RmjteC4Rn8Q-i-fIPFu6HenllRW4EQZ1HhXwIMF3YCtK6LnzBPWkTY3iss9UxpnZfpt4qSdpU7OEHdw5bYnS3K4SdCrLhqSf07i5E8K1ptJStXnBdsT9HYqIj3nHiZtEwQE4lFtkmA/s1600/family+6.2013.JPG" height="240" width="320" /></a></div>
Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com3tag:blogger.com,1999:blog-5189913051878988200.post-48270455756360925352013-05-08T18:45:00.005-07:002013-05-08T18:45:34.685-07:00black eyes, broken glasses, ear infections and meltdowns<i> I swear I blog in my head daily, but by the time I get to sit in front of a computer, I'm usually too tired to type a single word and all the emotions, frustrations, and feelings of the day get so jumbled up inside my head - I can't make heads or tails of what I really want to say! So, here we go again...</i><br />
<br />
Things have been crazy around here, as should be expected with three very vibrant and needy little girls taking up residence under the same roof. This leaves one very tired mama at the end of each day, but a happy mama none-the-less. Let's start with Molly.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHPFLHdH-8WC9t8um6uv5zK6IrCGAcdF-hqYG9siYuU01Vt6st3Zhms8dlqluECvyKnTkng1Pb5H89dVLo4R3n2FtmfiZW_zVHCddd5ofPcDYVXSDtg2RF27M5ZDeKSp1FcWPqWKRSFB0/s1600/three+girls+april+2013.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHPFLHdH-8WC9t8um6uv5zK6IrCGAcdF-hqYG9siYuU01Vt6st3Zhms8dlqluECvyKnTkng1Pb5H89dVLo4R3n2FtmfiZW_zVHCddd5ofPcDYVXSDtg2RF27M5ZDeKSp1FcWPqWKRSFB0/s1600/three+girls+april+2013.jpg" height="240" width="320" /></a><br />
About a month or so ago we started Molly on the Modified Atkins Diet with hopes that putting her body into ketosis permanently would allow the clarity we saw in her when she was sick with the stomach bug. Modified atkins restricts the carbohydrate intake and forces the body to burn fat for energy. Unlike the much stricter ketogenic diet, MAD doesn't require us to restrict calories or proteins. It seemed to really be working initially. We are working with her doctors and we had all her appropriate lab work drawn. There was an amazing clarity about her in those first few weeks. She heard us, she asked us how our day was, she interacted with us - it was like we were meeting a deeper level of our daughter. It was a happy two weeks - but now we're back to managing behaviors, she's zoney, her attention is that of a ping pong ball, and the meltdowns are worse then we've ever seen. Today was one of those days. We were the object of the stares in Target as my seven year old daughter alternated between slouching beside me as I pushed the cart and running away from me screaming and crying. She sobbed, she told me she didn't want me to be her mother anymore, she sobbed some more, she refused to get out of the car. It was gut wrenching and broke my heart as she said between the sobs "I don't want to be a brat, I don't want to be bad, I'm so sorry" and then began sobbing and screaming again. We're at a loss....<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj79l8sm7pVOd2Dc-w5ZB2d4KwpDcz88Kyrakt-GR4c5JgF6xit-GUUPlNfxDoSJNm-do7lMy3AGnlz7EX61hDEy3XsVdjtoWdbd7J_vWdETRgMqKpF-BhR5sY8aB7InyP7NnSfIXJOefI/s1600/photo(8).JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj79l8sm7pVOd2Dc-w5ZB2d4KwpDcz88Kyrakt-GR4c5JgF6xit-GUUPlNfxDoSJNm-do7lMy3AGnlz7EX61hDEy3XsVdjtoWdbd7J_vWdETRgMqKpF-BhR5sY8aB7InyP7NnSfIXJOefI/s1600/photo(8).JPG" height="320" width="240" /></a><br />
<br />
Tomorrow a specialist from Autism Intervention Specialists will come out to evaluate Molly and develop an ABA plan for home behaviors. Monday we meet with the diet team and a nutritionist. I don't know if it's blood sugar, if it's chemical, if it's the autism evolving, or if she's having seizure activity. All I know is the new Molly we were getting to know is not this Molly, I feel like we've gone backwards about 3 years in the last three weeks and I don't know why. I'm not ready to give up on the diet though - I do feel like it can hold some answers for us, we just need help in tweaking it to work for her. Today was very difficult, but tomorrow is a new day. She may have snapped her glasses in half today, but they can be fixed - I only wish it was so easy to make Molly feel better too....<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgookKG6NWRcetmBYIjXkrue2Vd_wIYRczibpifL2HiRH7Jb_0jISfJH-LPO6gO86qrwu8qxIxPffqyLDwWxatgWJca_MQA5O19ruRYWWBce22BNfUdP4I8VuqGraQs-Ie4tg71DdRbB-8/s1600/photo(7).JPG&container=blogger&gadget=a&rewriteMime=image%2F*" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgookKG6NWRcetmBYIjXkrue2Vd_wIYRczibpifL2HiRH7Jb_0jISfJH-LPO6gO86qrwu8qxIxPffqyLDwWxatgWJca_MQA5O19ruRYWWBce22BNfUdP4I8VuqGraQs-Ie4tg71DdRbB-8/s1600/photo(7).JPG" height="320" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlDf1MYwrfvicoJ4GegfPRsxDhHbEmol-nd4VTvUY5g2W8NZ6Aehj9hbVDZ8Sadf_aMR9E8bww5nI1JzkWJcYXq0pwh_GaVR8XH5BMGCFDHSOsr1Z29cnWMvvNDgePQRBUfahyphenhyphenXpXTbyc/s1600/photo(5).JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlDf1MYwrfvicoJ4GegfPRsxDhHbEmol-nd4VTvUY5g2W8NZ6Aehj9hbVDZ8Sadf_aMR9E8bww5nI1JzkWJcYXq0pwh_GaVR8XH5BMGCFDHSOsr1Z29cnWMvvNDgePQRBUfahyphenhyphenXpXTbyc/s1600/photo(5).JPG" height="200" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgptD4w19Jqm5niE9mdpFs5tlDKzyC4-__nlxXzWqTd3hAN4sC7mgzV2x9SudlGW1dmS_EB1YISx2reDSKARTui4R-Pjjmkc2TbZCgdGJl-2PZTuYN6iE_9XBVE8g_6NwtYDUL_5qu8Fqw/s1600/photo(6).JPG&container=blogger&gadget=a&rewriteMime=image%2F*" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgptD4w19Jqm5niE9mdpFs5tlDKzyC4-__nlxXzWqTd3hAN4sC7mgzV2x9SudlGW1dmS_EB1YISx2reDSKARTui4R-Pjjmkc2TbZCgdGJl-2PZTuYN6iE_9XBVE8g_6NwtYDUL_5qu8Fqw/s1600/photo(6).JPG" height="200" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgookKG6NWRcetmBYIjXkrue2Vd_wIYRczibpifL2HiRH7Jb_0jISfJH-LPO6gO86qrwu8qxIxPffqyLDwWxatgWJca_MQA5O19ruRYWWBce22BNfUdP4I8VuqGraQs-Ie4tg71DdRbB-8/s1600/photo(7).JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a><br />
That's enough right there, but we have 2 more kiddos to consider. Next in line comes Kennedy and every bit of her 4 years. She doesn't like being in the middle or being second. She would much prefer to be first, best, most, and the center of the universe. She was pretty sick for two whole weeks. Fever, cough, swollen glands were just some of her issues. They checked her for strep, for mono and came to the conclusion it was just a bad virus. Part of the reason they checked her so thoroughly was that she has been covered in bruises from head to toe. I mean, I know four year olds fall, but this was ridiculous. Her blood work looked ok though, so we still don't have too many answers. As she was finally recovered, she went back to school and that meant a visit to the playground between her 2:30pm dismissal and Molly's 3pm dismissal. Unfortunately this playground visit also resulted in yet another fall for young Kennedy. She face planted, and once again didn't put her hands down to catch herself. This resulted in a huge goose-egg over her eye which now looks like dark make-up applied to her eye as the bruise continues to darken after 6 days have passed. She proudly displays her "big boo-boo" to all that ask. Next I have to figure out why it is that Kennedy is falling so much.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTeNbhdjI54C5DUxU05kQxKqPTX20SeNAFXDFEJsy2PuFDyU1MLsUAAh5nHO_2jgWLYmqR5gjbKJz5UcjQEgI9BirzH1mWhHFOInGsicYuX-43RVjgaH5kViES5bc8ZtMUfHDEQaWOWsg/s1600/photo(3).JPG&container=blogger&gadget=a&rewriteMime=image%2F*" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTeNbhdjI54C5DUxU05kQxKqPTX20SeNAFXDFEJsy2PuFDyU1MLsUAAh5nHO_2jgWLYmqR5gjbKJz5UcjQEgI9BirzH1mWhHFOInGsicYuX-43RVjgaH5kViES5bc8ZtMUfHDEQaWOWsg/s1600/photo(3).JPG" height="320" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1d2Uxr2DjltXn9Z9qvKKNJPnq3YvUIvE__h7M4dfEA-7bkrFxLcN4ohhmNlkRGnACT-gCos1FG_g9KRr2PVnjcd-i5EDA6SODUM8XLgUiuFvTm8HbQP-sczYYmAe_uGOZ8TGKElS9cmc/s1600/photo(4).JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1d2Uxr2DjltXn9Z9qvKKNJPnq3YvUIvE__h7M4dfEA-7bkrFxLcN4ohhmNlkRGnACT-gCos1FG_g9KRr2PVnjcd-i5EDA6SODUM8XLgUiuFvTm8HbQP-sczYYmAe_uGOZ8TGKElS9cmc/s1600/photo(4).JPG" height="320" width="240" /></a>And not to be left out, my baby girl. Miss Zoey is currently on antibiotics for her 4th ear infection. Since number 3 required 4 rounds of antibiotics, we're pumping her full of probiotics and seeing where we go. If I had a glass ball, I'd say we're headed to the ENT but as the doctor has instructed, we're biding our time. Zoey is making great progress physically and developmentally which makes me so happy. She babbling up a storm and cruising around the furniture. However, I am really concerned that her feet turn in so far they are sideways, it's not normal but again, I'm told to bide my time. We've got a GI appt coimng up, to decide what she'll drink after her hypoallergenic formula. She also has her one-year check-up and a neuro follow-up as well as a repeat MRI in the future. Until then, we're enjoying her new found game of peek-a-boo, bouncing to Mickey singing the hot-dog song, and swaying her hips as she crawls around trying to make sense of the patterns of her big sisters. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmPTP6jkoLTmoacjTpzOrLcrjY9YimgcI6iDmWbCpVqZXTlzCUELs0rjyqG3xtzvzGpGtTKNdzzSymJ4LCT8l07fs9ZPkWPxAa9fFLKBa-NAHnt1CYsTcSNV0a5rkgxtqaZEFU9dKcxE4/s1600/photo(2).JPG&container=blogger&gadget=a&rewriteMime=image%2F*" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmPTP6jkoLTmoacjTpzOrLcrjY9YimgcI6iDmWbCpVqZXTlzCUELs0rjyqG3xtzvzGpGtTKNdzzSymJ4LCT8l07fs9ZPkWPxAa9fFLKBa-NAHnt1CYsTcSNV0a5rkgxtqaZEFU9dKcxE4/s1600/photo(2).JPG" height="320" width="320" /></a><br />
<br />
<br />
And where does that leave mom? It leaves me with a lot of unanswered questions. It leaves me doting on my kids but trying to be that helicopter parent. It leaves me scouring books and websites for ideas, recipes, symptoms, commiserations and deals on outdoor paraphernalia. It leaves me feeling very out of control and thus trying to organize whatever pieces of my house I can manage to do when there isn't a kiddo attached to my leg! And it leaves me with a mix of emotions I'm struggling to work through.<br />
<br />
I'm happy, because I have everything I could have ever wanted. I devoted and kind husband who is as wonderful a father as he is a human being. I have three beautiful little girls, who sparkle with life and love and intensely enjoy everything they do. I have a wonderful family who is always there, if not physically, emotionally. I have a home, I have passion, I have love.<br />
<br />
I'm angry because I sometimes let myself sink into the "why me pity party". I'm angry that my kids have to fight the battles they do. I'm sad a lot. I feel alone a lot, which seems silly because I'm never alone, but I think that's another whole blog about friendships and my attempt to keep them up, but my apparent failures on that - whoops!<br />
<br />
So, yeah, because I'm your mom black eyes, broken glasses, ear infections and meltdowns are just part of my day. And you know what, this past few weeks might have given me some new grey hairs, but I've earned each and every one of them! I love you girls with all my heart and am saying many prayers for patience and understanding.
<!-- Blogger automated replacement: "https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F2.bp.blogspot.com%2F-9iFwuE2Dcgw%2FUYr9MJwDNwI%2FAAAAAAAAAWU%2FKbByuZGrOYs%2Fs1600%2Fphoto" with "https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgptD4w19Jqm5niE9mdpFs5tlDKzyC4-__nlxXzWqTd3hAN4sC7mgzV2x9SudlGW1dmS_EB1YISx2reDSKARTui4R-Pjjmkc2TbZCgdGJl-2PZTuYN6iE_9XBVE8g_6NwtYDUL_5qu8Fqw/s1600/photo" --><!-- Blogger automated replacement: "https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F1.bp.blogspot.com%2F-AYKKAdl2rtw%2FUYr8ps9vMxI%2FAAAAAAAAAV8%2FlqzAdKP7wjU%2Fs1600%2Fphoto" with "https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTeNbhdjI54C5DUxU05kQxKqPTX20SeNAFXDFEJsy2PuFDyU1MLsUAAh5nHO_2jgWLYmqR5gjbKJz5UcjQEgI9BirzH1mWhHFOInGsicYuX-43RVjgaH5kViES5bc8ZtMUfHDEQaWOWsg/s1600/photo" --><!-- Blogger automated replacement: "https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F3.bp.blogspot.com%2F-Yn2-eVzK8Mk%2FUYr9X8QDHeI%2FAAAAAAAAAWc%2F9JM9gQTBbmc%2Fs1600%2Fphoto" with "https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgookKG6NWRcetmBYIjXkrue2Vd_wIYRczibpifL2HiRH7Jb_0jISfJH-LPO6gO86qrwu8qxIxPffqyLDwWxatgWJca_MQA5O19ruRYWWBce22BNfUdP4I8VuqGraQs-Ie4tg71DdRbB-8/s1600/photo" --><!-- Blogger automated replacement: "https://images-blogger-opensocial.googleusercontent.com/gadgets/proxy?url=http%3A%2F%2F1.bp.blogspot.com%2F-7odQNAC7th4%2FUYr8EK-tdXI%2FAAAAAAAAAV0%2FeWrRub9SM6E%2Fs1600%2Fphoto" with "https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmPTP6jkoLTmoacjTpzOrLcrjY9YimgcI6iDmWbCpVqZXTlzCUELs0rjyqG3xtzvzGpGtTKNdzzSymJ4LCT8l07fs9ZPkWPxAa9fFLKBa-NAHnt1CYsTcSNV0a5rkgxtqaZEFU9dKcxE4/s1600/photo" -->Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com1tag:blogger.com,1999:blog-5189913051878988200.post-84007741327571619272013-04-09T19:14:00.001-07:002013-04-09T19:14:10.659-07:00sometimes I'm in awe!Because I'm your mom, sometimes I'm in awe of my children. I know most parents are proud of their children. They are proud of their accomplishments, that home run, the A+, or the random act of kindness. So, maybe I'm just like every other parent in that I'm proud of my kid, but I'm pretty sure my kid is not like everyone else. I'm not proud of something Molly accomplished, but instead of who she is.<br />
<br />
Molly's day today was so rough, if it was me and not her, I would have been rocking in a corner crying. Molly though, was smiling almost the entire day, genuinely greeting people, and sincerely thanking me for a great day. Her soul is so beautiful and she is really just such a brave little girl.<br />
<br />
<br />
I should preface this by saying I know Molly could have it so much worse, but I'm pretty sure that she would handle just about anything we threw at her.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwvWQap3oiYOF-efG1eBuODS4lweUiyi-LYrmo2HjegnAuA_vXZuamUxDRXmnkqEa9bO7fGwglszRU81dD6U1X1lRjikYvRLS2cwC-wqFih1u9qJKXDNvj7-W3kfyzQObwX_UMfrncazE/s1600/photo+(7).JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwvWQap3oiYOF-efG1eBuODS4lweUiyi-LYrmo2HjegnAuA_vXZuamUxDRXmnkqEa9bO7fGwglszRU81dD6U1X1lRjikYvRLS2cwC-wqFih1u9qJKXDNvj7-W3kfyzQObwX_UMfrncazE/s1600/photo+(7).JPG" height="200" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifoSslmu8u0GBl-DtEAp1DDnpAm9OPQ8s7e2YzZQe6rKvJF0zwYZxZZQ1YlI88MDkue8aHwITaORKAYbtMNMeATF5k7hA32_LvOo1wWmeM2kGrxUMRmGwi4GcCCJBVEGrgvbPN-W2ljAM/s1600/photo+(10).JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifoSslmu8u0GBl-DtEAp1DDnpAm9OPQ8s7e2YzZQe6rKvJF0zwYZxZZQ1YlI88MDkue8aHwITaORKAYbtMNMeATF5k7hA32_LvOo1wWmeM2kGrxUMRmGwi4GcCCJBVEGrgvbPN-W2ljAM/s1600/photo+(10).JPG" height="200" width="150" /></a>So, I silently woke Molly girl up at 4:30 this morning. She was very confused as it was very dark. She attempted to get dressed herself, I fixed her and we packed the car and got on our way. We took daddy's car, so I plugged the portable DVD player in to the lighter outlet. Molly snuggled in with some WRECK IT RALPH and I fought to keep my eyes open. We cruised until about Framingham where we found the traffic, but we still made it to the CHB parking garage by 7:45am and got a decent spot and made it across the street without a stroller (whoops - wobbly kid was with me today). We were upstairs before the turned on the lights and in for our EEG hook-up at 8am. Then we made our way down to the lab. It took a while because they had to make sure they had al the assigned vials correct.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0s5Vv4F7zwhnCfUeAt8aPPnyYLlrLkxkK0ioG4veZdyPcv5UootbWy-xrSXL1T9jM9u07k06muCzQfedKnBjHGwgHg0WIwkv-F18MTCMFM9SEfcYxw8K4RmQG_cRbiW2DABxoDxavCOU/s1600/photo+(11).JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0s5Vv4F7zwhnCfUeAt8aPPnyYLlrLkxkK0ioG4veZdyPcv5UootbWy-xrSXL1T9jM9u07k06muCzQfedKnBjHGwgHg0WIwkv-F18MTCMFM9SEfcYxw8K4RmQG_cRbiW2DABxoDxavCOU/s1600/photo+(11).JPG" height="200" width="150" /></a>In marched Molly, informed them that she wanted them to check her right arm, and bravely sat with her arm extended. Not a tear or sound escaped that brave little girl as they took so many vials of blood, I lost count (i think it was 10 or 12). Then she got to give a urine sample, which she thinks is hilarious because she always pees on my hand. Finally, there was a break and my very hungry little girl (since it was 9:45am) was able to dive into her MAD friendly breakfast. We found a quiet spot out by the playground, and she devoured her bacon and her flour-less pancake thins with peanut butter, as well as half her whipped cream with peanut butter and chocolate. When she'd had enough, she was begging to play on the playground. I didn't have the heart to say no, even though it was still all wet from the rainstorm. So, I let her play for about 10 minutes. I "helped" her across the monkey bars - meaning that I carried her - and let her slide and get her bottom all wet.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEONa85aYVy2ir_SzFGjPM0PPFKcmAij9YUr7wVjdR4Ynxg3ZkovTtX3_Kta_64FkNaNwJjSbdwCYwMf-LfXG0GkOqROEfF3SdG__U9-o2zpDXD7uoe4cJumKTf2aif9-rp20x45T6B8s/s1600/photo+(14).JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEONa85aYVy2ir_SzFGjPM0PPFKcmAij9YUr7wVjdR4Ynxg3ZkovTtX3_Kta_64FkNaNwJjSbdwCYwMf-LfXG0GkOqROEfF3SdG__U9-o2zpDXD7uoe4cJumKTf2aif9-rp20x45T6B8s/s1600/photo+(14).JPG" height="200" width="150" /></a>She dried and we went back upstairs, this time to the 10th floor to see Dr. Ware. We are so thrilled to be back with this brilliant specialist in developmental behaviors. Our insurance change last year had prevented us being able to see her, but now we can again - and I know good things will come of it. She understands that Molly is a complex kid and doesn't resemble anything you might find in a text book. She is passionate and an advocate and will help us create a program with goals appropriate not only for a child on the spectrum but for Molly. This appointment consisted of me and the doctor talking while Molly played IPad in the hall. It also consisted of some basic testing and play time with Molly. This meant Molly had to work and you could see it tiring her out! Things were running behind schedule already, so Molly sat in the hall while the doctor scored some testing and ate her MAD friendly lunch. She, once again, devoured her lettuce roll-ups with mustard, ham and cheddar, her cucumber and celery sticks, and the remaining choco pb whip with some raspberries. She also discovered that she LOVES the Nestle Pure Life Wildberry Flavored water.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPd2LpZF6hiSAg58B1EpHotcK8JCj0pawL3jfjNqxB0jiVsKScyA_MHfdQ87GObrBV491KasKwHBtohdF7cYnm10KMNMqhRNc_iua-z28AUmWvV2Ds5nZ_G3QA5RR7UckrLvXKOqndUJk/s1600/photo+(9).JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPd2LpZF6hiSAg58B1EpHotcK8JCj0pawL3jfjNqxB0jiVsKScyA_MHfdQ87GObrBV491KasKwHBtohdF7cYnm10KMNMqhRNc_iua-z28AUmWvV2Ds5nZ_G3QA5RR7UckrLvXKOqndUJk/s1600/photo+(9).JPG" height="200" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmBO5MDfwqGTGIKbUpQPsAojS2nIyAmvrJ_eRFvUi547cVfpkiRsgx6JsFfqGMw4NbpdFFOTABx7GJYF0xjkPmh2mOu12-fsrFP2Yq_K3-mcLL0YaQPeLi5mSmRwprP1P6Egk6uOaWpo0/s1600/photo+(12).JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmBO5MDfwqGTGIKbUpQPsAojS2nIyAmvrJ_eRFvUi547cVfpkiRsgx6JsFfqGMw4NbpdFFOTABx7GJYF0xjkPmh2mOu12-fsrFP2Yq_K3-mcLL0YaQPeLi5mSmRwprP1P6Egk6uOaWpo0/s1600/photo+(12).JPG" height="200" width="150" /></a>Dr. Ware then practically raced us to see Dr. Poduri as she wanted to tell her that she was extremely relieved to say there had been no cognitive decline associated with the behavioral regression we had seen. And, watching Molly today, I totally saw that she was pretty much on. In fact, I've noticed a subtle change over the past few days as we've initiated the diet - but I don't want to get too excited. We then met with Dr. Poduri who informed us that Molly's bloodwork looked like that of a child who had been in the hospital to initiate the Keto diet and was being discharged on day 5. Her Ketones are in Moderate to High Range, her bicarb is a little low but not dangerously and her blood sugar was 60 which is just high enough. So - overall she looks good. However, we know Molly so we have to continue to check urine ketones and we get more labs drawn next week. The plan is to see what we can tweak and how we can make MAD work best for Molly. We are adding bycitra to her list of meds to help prevent kidney stones. By this point it's 2pm, and Molly is getting punchy! We end up meeting with Dr. Poduri, the nurse practitioner, and 2 other medical doctors. We plan to visit the keto clinic and the nutritionist in May, and then to see Dr. Poduri in July with Zoey in tow. We wobble our way out to the waiting room and let them know we're ready to take her "buttons" off.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzlKDz3YuPdPeEoPXBq8LESZzhrrNL86SMFhhP2DibHbBDac81BW5FiJEZ2pWDsLOlggiylPzGqmfXp_FMu5EzryW4tDQ-BQXvUGiodA_D4oSh0B9fD0wXQwKSX8BPzCj_JwF127OYYjA/s1600/photo+(17).JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzlKDz3YuPdPeEoPXBq8LESZzhrrNL86SMFhhP2DibHbBDac81BW5FiJEZ2pWDsLOlggiylPzGqmfXp_FMu5EzryW4tDQ-BQXvUGiodA_D4oSh0B9fD0wXQwKSX8BPzCj_JwF127OYYjA/s1600/photo+(17).JPG" height="150" width="200" /></a>Molly, by this point, had been awake about 11 hours, and she was feeling it in addition to how early she awoke this morning. The laid down to have the buttons removed only to have the poor tech find that the guy who hooked her up had actually taped the wrap and hat to her hair. This led to pulling tape out of the poor baby's hair and lots of tears. She didn't flinch, didn't move, but the tears streamed down her face and when the pulling had stopped, the tears didn't. My heart broke because she looked at me and said, "Mommy, I don't know - I have tears!".<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgEPfU8Wr6ERFm8mXmJ9QTFJJNwedaUlC2oSNPtLaGDCSCcIJhGtC3D9-p20PpxbeUJlv72sMkiuRH51L6Do93wEiuh3neI-9jsKviW10eehxUBP3FGxQEfNzwwW5RdfxwLVprOzxUUfI/s1600/photo+(16).JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgEPfU8Wr6ERFm8mXmJ9QTFJJNwedaUlC2oSNPtLaGDCSCcIJhGtC3D9-p20PpxbeUJlv72sMkiuRH51L6Do93wEiuh3neI-9jsKviW10eehxUBP3FGxQEfNzwwW5RdfxwLVprOzxUUfI/s1600/photo+(16).JPG" height="200" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4-A-BqXRIKcJnhYmYeeoNSXn31xUjawgPEr_xxzXWhNKYTBxqHHwbWzAJ6ea5QAgzXBNNnOBZ_kvaQrVKyLzdYMNSPaUO6XL5WBcd0qpZJLZeWvPbV2nQ_90rFr099BHGUc9FHBjeWcE/s1600/photo+(13).JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4-A-BqXRIKcJnhYmYeeoNSXn31xUjawgPEr_xxzXWhNKYTBxqHHwbWzAJ6ea5QAgzXBNNnOBZ_kvaQrVKyLzdYMNSPaUO6XL5WBcd0qpZJLZeWvPbV2nQ_90rFr099BHGUc9FHBjeWcE/s1600/photo+(13).JPG" height="200" width="150" /></a>I promised a stop at the Disney Store on the ride home, since I had to finish getting some stuff for her cousin and that seemed to negate any hair pulling she had endured. We made our way out of the hospital, set ourselves back up in the car and were on our way by 3pm! Molly passed out for about 20 minutes, and was in really good spirits when we got to the Disney Store. Sweet baby girl bee-lined it to the Wreck-it-Ralph Clearance display! YAY for my wallet! Then she insisted her sisters needed gifts too - another heart warming moment! We paid, got back in the car and did great until we hit that darn merge with 95. We were home by 6:20pm. She got her hot dogs, cheese and some more PB and choco whipping cream. She got a good shower, and then some IPad time. She was tucked into bed a 8pm and probably sound asleep by 8:10!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQE0BTqJKbSSiSI2LTWohFamQsFoEAUy4ph6n2jMdF1pTNXU0KPuOBaoohwrqBcphd9JumxxW6gTziSh7JqCacChjs6bKUpn7JDjMfHsfpzm3jttegS1KN5dS64m0NNFCf8SdqiTNfkfs/s1600/photo+(15).JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQE0BTqJKbSSiSI2LTWohFamQsFoEAUy4ph6n2jMdF1pTNXU0KPuOBaoohwrqBcphd9JumxxW6gTziSh7JqCacChjs6bKUpn7JDjMfHsfpzm3jttegS1KN5dS64m0NNFCf8SdqiTNfkfs/s1600/photo+(15).JPG" height="200" width="150" /></a>She is an amazing little girl, so good-natured and truly sweet as pie. I thank GOD every day that she is who she is because she makes these crazy days manageable and almost enjoyable. What's on the horizon? We've got labs next week, Sleep appt in Waltham next week, pulmonology next week, a PPT in the near future (for her and Ked), Cardiology appt in May for Molly and the autonomic issues, Keto clinic and dietician in May, epilepsy in July and development in October. And believe me - I KNOW that is just the outline! <br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com1tag:blogger.com,1999:blog-5189913051878988200.post-63391628158737876462013-04-08T19:03:00.003-07:002013-04-08T19:03:51.262-07:00you think I can do it allBecause I am your mom, I do my best to make you think it all works effortlessly. I wipe your noses, tie your shoes, make your food and try to do it with a silly smile all day - but man, in reality I am tired and sometimes the tasks at hand seem to outnumber the minutes in the day to complete them. <br />
<br />
Molly is beginning a new medical diet to add to the meds that help control her seizures but that should also help her gain some clarity and attention. It is called the MAD diet (modified atkins diet), and while it mimics the ketogenic diet in many ways there are marked differences. MAD doesn't require that we weigh and measure Molly's foods, but it is a very low carb diet. For now, she can only have 10g of carbs a day. That is not a lot of carbs at all - but she's being an amazing sport about it all.<br />
<br />
Yesterday she had a glamour party with her Brownie troop and party of the activity was a giant cupcake as big as her head - for which she didn't fight me at all when we talked about not having one, and just went ahead and had her cup of popcorn. I expected tears but was met by a very grown up girl who just finished a unit about nutrition and is trying to figure out why she can't have grains when that's what gives you energy. So as boggled as I've made my little girl's mind - she's so very trusting of Mommy and is willing to give this a try. We're experimenting together. I discovered that although everyone else liked the mashed cheesey cauliflower - Molly thought it was disgusting. Molly discovered that you can wrap sandwiches in lettuce and that Mommy can make fake bread with eggs and cream cheese. I am FOREVER grateful that Molly is willing to try new foods and pretty easy going as long as it's within her schedule.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiab1gjCmTyyvEYoiVJXa2-G9fiehtolt6l8PjJc4svxBcr68kWO-YHqlB1OVzZMxpNA96xa-Q1n7ShP2WlzIqo0Kr20wolVWFRnz_68ecgSpqVgFzLGtO50GdgnQlMiudo1aciy26iYFs/s1600/photo+(11).JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiab1gjCmTyyvEYoiVJXa2-G9fiehtolt6l8PjJc4svxBcr68kWO-YHqlB1OVzZMxpNA96xa-Q1n7ShP2WlzIqo0Kr20wolVWFRnz_68ecgSpqVgFzLGtO50GdgnQlMiudo1aciy26iYFs/s1600/photo+(11).JPG" height="200" width="150" /></a>That being said - Today was a prep day, it was a Monday, it was a BUSY day! We started it off at about 1am, well Zoey and I did anyway and then again at 2:45am and then for real at 7am. I had to make bacon and eggs for breakfast, pack a lunch and then prepare 3 different dinners. There were bills to pay, FSA requests to organize, and zero carb foods to discover and order. There was a toy store run this morning to reward Kennedy for 4 days without temper tantrums (granted it was out of 6 days). It was an hour long trip since Kennedy had a $15 budget with eyes for everything expensive! But, no temper tantrums! There was also a WHOLE FOODS run to try and find Molly-friendly food that resulted in just fruit and a scone for me and Ked - that place is seriously expensive. Then there is the school drop offs and pick ups, the bank run and fitting in a nap for a very cranky baby who is getting some new and very sharp teeth.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYvBdBACQBT8jZhs86qT6dEFTjNwc6SePjhwU2LBqJLrxgiGiN1Hf2BHXREecIVNkLv4OxiGdHA7UzP8dT8ioMJ13SB4qq1zAE-8hZ5iQeHhH2AmF1Ua2b1H3XSGbuC0Qaqmwlcg4LHNk/s1600/photo+(9).JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYvBdBACQBT8jZhs86qT6dEFTjNwc6SePjhwU2LBqJLrxgiGiN1Hf2BHXREecIVNkLv4OxiGdHA7UzP8dT8ioMJ13SB4qq1zAE-8hZ5iQeHhH2AmF1Ua2b1H3XSGbuC0Qaqmwlcg4LHNk/s1600/photo+(9).JPG" height="200" width="150" /></a>Then it was dinner prep time, convincing Kennedy that she doesn't live next door and that sometimes the amazing boys who are 5+ years older then her cannot always play with her and then getting her to paint instead - give that kid a chance to make a mess and distraction is usually achieved. Of course, Ked's is outside, Molly wants to be in and Zoey just wants a pouch sewn on to my leg so she can come everywhere I go! Somehow dinner got on the table, baths and showers were given, medication was administered, most of the dishes were done,. And then it was time to prep for tomorrow's adventure.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnOT6sVct_xmEHA6SWfhRjy0Gq3-h0jplM6lBTf2ZuNSRrtJUnkWq8Pq7yzDaRLNLHNMd3kPuStB_Ry1xvRSIx04VtZUa4n7p9edK1ce0yhXdyUYdII2D3TVfVCRNfIqqRoHSbLu9RSH0/s1600/photo+(7).JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnOT6sVct_xmEHA6SWfhRjy0Gq3-h0jplM6lBTf2ZuNSRrtJUnkWq8Pq7yzDaRLNLHNMd3kPuStB_Ry1xvRSIx04VtZUa4n7p9edK1ce0yhXdyUYdII2D3TVfVCRNfIqqRoHSbLu9RSH0/s1600/photo+(7).JPG" height="200" width="150" /></a>I'm waking Molly up at 4:30am, changing her and throwing her in the car and driving to Boston to get to the hospital for an 8am EEG hook-up. She's being hooked up for a 6 hour ambulatory EEG. We're getting labs drawn, then we have a 10:30 appt with her Developmental Behavioralist and then a 1pm with Dr. Poduri. Then 2pm we get the leads taken off and get the heck out of Boston!. Of course, with starting this new diet, I had to prep all her food for breakfast and lunch - since she has to be fasted for blood work. That was another whole step for tonight's list. There was also prepping Kennedy's clothing for the morning and Molly's. There was also packing our bags for the car ride and time at the hospital.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpY8j9KrVJ0V-jHSC-9F5dOP08r2SB76cdO7yrs66qCJXv73vjl4b8J0yjwYgYT-N5XtsT2h_fT_d2OsJwjeHvb6mEAthor-FluxX_Vresn3sp-E_4S06sqj3pdG1Xuj2CY1mneFwuT_Q/s1600/photo+(10).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpY8j9KrVJ0V-jHSC-9F5dOP08r2SB76cdO7yrs66qCJXv73vjl4b8J0yjwYgYT-N5XtsT2h_fT_d2OsJwjeHvb6mEAthor-FluxX_Vresn3sp-E_4S06sqj3pdG1Xuj2CY1mneFwuT_Q/s1600/photo+(10).JPG" height="320" width="240" /></a></div>
Yeah - the day was busy. And now, here I sit under a blanket, on my couch, blogging it out. And, I fully admit when I close my computer, play my WORDS WITH FRIENDS game on my phone, I will fall into a deep sleep on the couch for about 40 minutes, and it will probably be the best sleep I get all night since I'll be afraid of missing my close to 4am wake-up. But hey, tomorrow's prep has already started as I bought an extra iced coffee today to grab from the fridge so I don't have to stop tomorrow since dunkin' opens after we leave!<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG8U0B2JvJznIgtHmfI8XdZZnsn5XfhbTMbSqpupOA7KHAy6xrR0wa3pC3KAu0K1fPuUdHI_5UNMhXAtewlVHDZh9GoJ_Gm2OTIcx9es_kcPfvCynbFKMeHK5QjAqnftLp3673DqZrfTU/s1600/photo+(6).JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG8U0B2JvJznIgtHmfI8XdZZnsn5XfhbTMbSqpupOA7KHAy6xrR0wa3pC3KAu0K1fPuUdHI_5UNMhXAtewlVHDZh9GoJ_Gm2OTIcx9es_kcPfvCynbFKMeHK5QjAqnftLp3673DqZrfTU/s1600/photo+(6).JPG" height="200" width="150" /></a>So girls, I hope it looks effortless to you, and I'm truly sorry if I snap when you tell me you're hungry as I'm trying to put 3 different dinners on the table, but because I'm your mom I can promise you - it's HARD work, but I love you, so it's totally worth it!<br />
<br />
<br />
<br />
<br />
<br />
<br />Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com1tag:blogger.com,1999:blog-5189913051878988200.post-43013100453876051802013-03-20T01:00:00.002-07:002013-03-20T01:00:40.963-07:00Clean Up duty (may be gross, tried to keep it clean)Because I am your mom, I'm usually on clean up duty....<br />
<br />
It's hard to say when this illness started, or what exactly this illness is. About 2.5 weeks ago, Ked had a fever and Zoey was super fussy. About 3.5 weeks ago Zoey had a fever. About 2 weeks ago Molly was coughing so hard and complaining of a sore throat. On Saturday Zoey puked, Tuesday morning Daddy puked, Sunday night into Monday Mommy was feeling nauseous and yucky but thought it was a med not working. On Tuesday night Ked puked - but at 6pm and nothing since and now at 2am down goes Molly, who is still so congested it's hard to recognize what's what. The thing is, everyone puked once (so far, knock on so much wood). And every incident had an explanation. Like for Zoey - her persistent ear infection was worse and the antibiotic she was on causes belly upset. We didn't even think stomach bug as she started with lots of diarrhea shortly after starting zithromax. It all matched up.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyqGbm6I-dAKEgcLN6n4Aot4nAWzJ5FItuKelSwv2NTPvrbqGryC5yuQ24_WhGf6zPswWzCnwxtzrNAlQoLh74ti8jFkV60pGHEtj7GWc5Ox62xq7Xz9T7NxZWy3GIpV3OUQvFx1oIrKw/s1600/photo+(8).JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyqGbm6I-dAKEgcLN6n4Aot4nAWzJ5FItuKelSwv2NTPvrbqGryC5yuQ24_WhGf6zPswWzCnwxtzrNAlQoLh74ti8jFkV60pGHEtj7GWc5Ox62xq7Xz9T7NxZWy3GIpV3OUQvFx1oIrKw/s1600/photo+(8).JPG" height="320" width="240" /></a></div>
Unfortunately, poor Zoey is having a rough go. She's not keeping much of anything in and is slightly dehydrated at the moment. We are doing our best to get pedialyte into her at every feed, so fingers crossed! She's turned blue a few times though and is just pretty miserable, but at least she is trying to get restorative sleep.<br />
<br />
I sent Daddy away. After his incident, which coincided with bad sleep, heavy shoveling and over exhaustion - he felt fine and went to work. I pretty much commanded he get a hotel room instead of making the 2+ hour drive again and actually get some rest and some good uninterrupted sleep. He must have been tired - cause he listened.<br />
<br />
Thankfully Auntie Jamie had planned to come over today and was here to help as I dragged Zoey back to the doctor and then Kennedy let loose. Now, before Keddy puked she had complained her belly hurt - after she stabbed herself with play scissors. Then I let her play in the tub, which she loves, but being Kennedy, she got a hold of shampoo and somehow ate it, got it in her nose and eyes. It was shortly after this where she had her incident.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVSqaoGycjto0OCCE0wnO1_frYBJAFU9lbgw2cqkSDjA7ADwlZN2HHTnj85tpy5bvTYg1Kwa8V4z2OjsTLYs1AQliiJfSOZkB_a9giczUPxEr2dYFTihyphenhyphensrzqCQvtqUuvS939uf0cN-LU/s1600/photo+(9).JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVSqaoGycjto0OCCE0wnO1_frYBJAFU9lbgw2cqkSDjA7ADwlZN2HHTnj85tpy5bvTYg1Kwa8V4z2OjsTLYs1AQliiJfSOZkB_a9giczUPxEr2dYFTihyphenhyphensrzqCQvtqUuvS939uf0cN-LU/s1600/photo+(9).JPG" height="320" width="240" /></a>And then poor Molly. (Whom I should mention has had a very very junky cough for a few weeks). Well, I kept Keddy on the couch with me, put Zoey in her crib and Molly in bed. I heard Molly rustling at 1, so I checked her, she said she was fine and I put her back to bed. Then I heard the tell tale cough at 2:30 and went running. Molly doesn't understand throwing up and it scared her a lot. Keddy is refluxer and knows to use the bucket, Molly not so much. I tell you, there is nothing like a puking child to get you disinfecting and cleaning your house at 2:30am. I lifted my 53 inch, 62 pound child straight into a warm shower and let her relax there while I stripped, lysoled, filled washing machine, bleached etc... After chanigng her and settling her with puke bucket #2, I continued my clean. Who cares that there is frost on the ground. The windows in our bedroom and the girl's bedroom are open and the doors closed!<br />
<br />
You see, I may have said a few times in the last few days, "oh #*%)(!" or "why now?" but I NEVER said I didn't want to be their mom - it's part of the job, it's a yucky part. It's definitely not the hardest thing I've ever done or ever will do - but for whatever reason, puking shoots my anxiety levels through the roof. I think it is also because the gala is this weekend, so in the end, I guess I'm grateful it's happening while I'm home to take care of them.<br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPwAd89c3ah2qbgialvzeWqmQkypfX8rCUvCIXfbLalcJeBQGTtxACg9XMHxvIeHPZ-VOvGN5Jmlp5qdw5655Gw7B9azEptkpUgCaWO5EtBxi7YY7hqag7L9efNx49omli6Buu1Ye7wpM/s1600/sick+slumber+party.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPwAd89c3ah2qbgialvzeWqmQkypfX8rCUvCIXfbLalcJeBQGTtxACg9XMHxvIeHPZ-VOvGN5Jmlp5qdw5655Gw7B9azEptkpUgCaWO5EtBxi7YY7hqag7L9efNx49omli6Buu1Ye7wpM/s1600/sick+slumber+party.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">sicky sick sick sick slumber party</td></tr>
</tbody></table>
<br />Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com1tag:blogger.com,1999:blog-5189913051878988200.post-61930184805956882072013-03-10T08:38:00.001-07:002013-03-10T08:38:34.216-07:00a "me" dayBecause I am your mom, sometimes I need a "me" day. These quiet days do not come along very often and realistically speaking they are not very quiet, at least the way that I do them. I am very grateful that Daddy insisted I leave the house yesterday and that Grandma sent me a gift so that I could leave the house. I still got up in the morning and made breakfast and prepared the house for me to be gone for the day. I got my things in order and left to meet a friend for a quick cup of coffee and then it was off to the hair salon.<br />
<br />
I haven't had my hair done in such a long time. I think I cut it about six months ago, and I haven't had it professionally colored in about two years. It was just one of those luxuries that had to fall by the weigh-side when I became a full time stay at home mommy. But, alas, upon looking at my reflection in the mirror a few weeks ago I noticed something shiny and silvery sticking up on the top of my head. I know grey hair is distinguishing, and I know I've fully earned the changing color of my locks in my long thirty-two years. But, honestly I'm not ready. Yes, there are days where I am so tired and worn down that I feel about three times my age, but then there are days when I'm running around and playing with you girls and I feel like I'm 18 again. Those moments are usually followed by a night of motrin and sleep, but still - I'm just not ready for grey hair.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoQY7nuXQWh219QsG4-nKvBsob8mAy-bW0ta35fiDiwuKWpTOXJBqH_H407m9ndeiSaiKhbig_DILolamkIMbGveWYbFxmW9Uhgw-AzthqHrU4m20V3qoc-JjVsS97G6iVJDPAD8D0u2M/s1600/photo+(5).JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoQY7nuXQWh219QsG4-nKvBsob8mAy-bW0ta35fiDiwuKWpTOXJBqH_H407m9ndeiSaiKhbig_DILolamkIMbGveWYbFxmW9Uhgw-AzthqHrU4m20V3qoc-JjVsS97G6iVJDPAD8D0u2M/s1600/photo+(5).JPG" height="320" width="240" /></a>Being a Stay-at-home-mom has caused me to sink into the ease of dressing. The clean sweat pants and shirt are usually the quickest things to pull on. The dress clothes and shoes have certainly been traded for slip on UGGS and bleach splattered sweat shirts. And, well, if I have jeans on - watch out I'm dressed to impress! My make-up palette and brushes sit pretty much unused and my straightening iron is collecting dust. These things have no use in my hectic day to day life with three little girls who need me pretty much constantly. However, there is a gala coming in two weeks for which I must dress to impress. And, more importantly, every now and then I need to impress myself and maybe even those around me :o) So, off I went to the salon. We chose caramel highlights and soft flowing layers. I once again have two distinct eyebrows and it feels wonderful! I cherished every minute from having my hair washed to someone else drying it for me. I used my foil time to organize my to-do list for said gala and then I just sat for a few minutes. It's amazing that the task of going to the hair salon can feel like such a piece of heaven, but it's all in our perspective. I sat for 2 hours without being climbed on or yelled to once! It was great, and yet, I texted home three times because I missed them!<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSjVFEMAUP7PKCXqpP981bBP9GPPFZW9ezxbtIfZt3BaMNFFqu86cB4uy9-J3kbRiU5zUUEj8Pd6KMsol7z9lbU72itVy3yC6NP9EHlg0Su7TU70AJg7QAzOHmrfYHdZNxKaQRdMuYyP4/s1600/photo+(4).JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSjVFEMAUP7PKCXqpP981bBP9GPPFZW9ezxbtIfZt3BaMNFFqu86cB4uy9-J3kbRiU5zUUEj8Pd6KMsol7z9lbU72itVy3yC6NP9EHlg0Su7TU70AJg7QAzOHmrfYHdZNxKaQRdMuYyP4/s1600/photo+(4).JPG" height="200" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxK3yUp7EU-MXM17_AWNl4JKyJTXODmGzqNTGmV11PHmg_SAxBx0nOLGJhg7X82BCzzXeh5KKIBhp3oX94_sHPRWp2PD9FBGEZqzDpzgOcceG-mFmuGjUlAAY51PMqm8YeIc2Q9_r3FHQ/s1600/photo+(3).JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxK3yUp7EU-MXM17_AWNl4JKyJTXODmGzqNTGmV11PHmg_SAxBx0nOLGJhg7X82BCzzXeh5KKIBhp3oX94_sHPRWp2PD9FBGEZqzDpzgOcceG-mFmuGjUlAAY51PMqm8YeIc2Q9_r3FHQ/s1600/photo+(3).JPG" height="200" width="150" /></a>When my hair was done I had to high tale it down the highway to the spa an hour away for a pedicure and manicure. My feet have not seen the light of day since about August. This winter has been particularly vicious on my skin. Everything is so dry from repeated washing and sanitizing. I settled myself in to the massaging chair and prepared to relax. Of course, I texted home again to check on the kiddos - I mean they had been sick, and to make sure they hadn't tied Daddy up or pushed him down the stairs. The pedicure and manicure were amazing. My feet felt human again! As requested by Molly, I got purple toe-nails to show my Purple Pride for not only our gala but also the upcoming International Purple Day for Epilepsy (March 26th). And much to Keddy's chagrin, I didn't put pink in my hair, but I did put it on my nails for her. My time was soon over. I had intended to do some outlet shopping, but I was missing my girls and Chris and decided to head home in time to help with dinner.<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_ZobvlTnoKIV_6xVLR5bdddYaS0gtZkWaBCqx4G-WTdhE5ylaYV2ok4-csHvJWnN__MHzF0v9aUcvWrBg-HvjpL-vwOd-t76j2VptlHKUz4W9Y8HY0FzNSMd1h4_ZxDZ9k5OwHdYerAg/s1600/photo+(2).JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_ZobvlTnoKIV_6xVLR5bdddYaS0gtZkWaBCqx4G-WTdhE5ylaYV2ok4-csHvJWnN__MHzF0v9aUcvWrBg-HvjpL-vwOd-t76j2VptlHKUz4W9Y8HY0FzNSMd1h4_ZxDZ9k5OwHdYerAg/s1600/photo+(2).JPG" height="320" width="240" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_iIDk6_4NYnO_YJ11ujbC6NBrw_NDbcBH3VIsuZf6c9EXspkLDAMCT37qBG7UigYOluswjz11KhaYv2RExjiDTHP_MRX7DVQ5OR9Vwt3ub6YFNSubSJExqao3q5IEfPyTmW9jcaLGNCI/s1600/photo.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_iIDk6_4NYnO_YJ11ujbC6NBrw_NDbcBH3VIsuZf6c9EXspkLDAMCT37qBG7UigYOluswjz11KhaYv2RExjiDTHP_MRX7DVQ5OR9Vwt3ub6YFNSubSJExqao3q5IEfPyTmW9jcaLGNCI/s1600/photo.JPG" height="320" width="240" /></a>I no sooner walked in the door then I had three little leeches hanging on mama, but their kind words and compliments of my beauty were so heartwarming, I didn't care. I was home for five minutes before I was thinking of the next time I might get pampered, but then I quickly realized that I am truly pampered every day. It may be with love, sloppy kisses and snuggles - but it's a wonderful kind of pampering! So, yes, I enjoyed my "me" day very much - but here, at home is where I belong. Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com0tag:blogger.com,1999:blog-5189913051878988200.post-36652851525519316292013-03-07T17:34:00.000-08:002013-03-07T17:34:03.179-08:00a constant mix of emotionsBecause I am your mom, I will ALWAYS try to put on a brave face even when your pain is killing me inside. And I will ALWAYS be proud of whatever milestone you achieve, however big or small! These are two diverse emotions, but the path of motherhood has taught me that sequence and order mean nothing. Being a mom is the hardest and most rewarding job I've ever had. I mean, serving bagels and coffee at BAGELZ back in the day did have its perks, but seriously nothing I've ever done compares with mothering Molly, Kennedy and Zoey. Nothing in life has ever exposed me to the range of raw emotions I feel on a daily basis. And even though I have three girls, they are each so different that parenting them is like starting the level all over again while still simultaneously playing the game in two other ways.<br />
<br />
Admittedly, a lot of my focus tends to lay on Molly. She's the oldest, her list of challenges seems to grow daily, and her persona makes you just want to hug her all day. Today, Molly found out she gets to be BELLE 1 (of 2) in her Yale Children's Theater production of BEAUTY and the BEAST. My heart soared when I read the email, because I'm so proud of her. My eyes filled with tears when I read the email, because I'm so proud of her. And I couldn't help but smile when I saw how excited she was to get the part. Of course I'll worry, but I know in my heart she will be great - no matter what she does up there! So, although her days have been challenging and we are headed to our beloved Dr. Carlson tomorrow for some insights - today brought a much needed beam of sunshine for Molly (note: I would have been dancing if she was playing a tree - I'm just so proud of her for wanting to be involved!)<br />
<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw3xcPXCMvCURo-pksaee2LA5ChPkHZ2fX1wXav_Po7HT5WIJlEaH12uXSwnvj34L2GncdVNKO1GlBkTUxO2A1cOyJ_KLAeeYuvv5n6yvD2YhIUNg5V-f-4QxYKXkxb6N57fthkVYbzEM/s1600/photo+(3).JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw3xcPXCMvCURo-pksaee2LA5ChPkHZ2fX1wXav_Po7HT5WIJlEaH12uXSwnvj34L2GncdVNKO1GlBkTUxO2A1cOyJ_KLAeeYuvv5n6yvD2YhIUNg5V-f-4QxYKXkxb6N57fthkVYbzEM/s1600/photo+(3).JPG" height="200" width="150" /></a><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dwcidOxxJLbBSQEUfNMbDMLTi96Gqws1QWhNs2dvLlLIDzWUaAqOC_Y-P26nKGcwYiQh3R3oB06HGV1WeAC0g' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Also admittedly, young Kennedy has learned to quickly pull focus. Whether through death-defying stunts or ear-piercing tantrums - she clearly makes herself known in our day to day lives! Yesterday Kennedy made me so proud as she focused almost completely for the entire 40 minute gymnastics class despite a crowd of lively classmates. Her "apart-together" jumps are coming along nicely, she's conquered the fear of not only walking the balance beam alone but will now turn in circles and walk backwards. Her tumbling is coming along and her pre-cartwheel is really getting there! She also gave me no issues whatsoever about staying with Poppy today so I could take Zoey to her appointment. I am really looking forward to Kennedy's "Big Big Show" and to her Kindergarten registration. She will be undergoing some testing because although we no longer feel she is on the spectrum, we do know there are some missing connections for her. It's interesting because the missing pieces seem to be in a completely different place then her big sister's, but again - 2 totally different kiddos. She is struggling with retaining letters and numbers, even though she clearly wants to know them. And because Chris and I both believe the greatest disservice you can do your children is ignoring their needs, whatever they may be, because you are afraid of a label or embarrassed or scared; we will get her tested and we will get her whatever help she may need!<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoXL9WO6NlhMfYY0Pdotxy8xtJsoT3tBmQszdcGi-pVnyDZpxdPDbukE-yZqSt2tpNOCvBVnc6_QH5i0G7fjyqtqSsNvMwsMN3czucdDGrq5EH6my35INg3Q97ofjvnVqV-Idjp5TBzn4/s1600/photo+(7).JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoXL9WO6NlhMfYY0Pdotxy8xtJsoT3tBmQszdcGi-pVnyDZpxdPDbukE-yZqSt2tpNOCvBVnc6_QH5i0G7fjyqtqSsNvMwsMN3czucdDGrq5EH6my35INg3Q97ofjvnVqV-Idjp5TBzn4/s1600/photo+(7).JPG" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thank Goodness for POPPY!</td></tr>
</tbody></table>
And so, number 3 joins the bunch. She has changed our lives in so many good ways and really completed our family - but I could have never been prepared for what adding a third child to our mix was going to mean. Zoey had a rough first six months. She screamed day in and day out. We were at the doctors, the ER, the GI. We tried elimination breast feeding and hypo allergenic formulas. We tried different meds and different techniques. To say it was "just colic" is such a gross understatement of the nightmare of pain our child was in, that we won't even acknowledge that "C" word. We pushed and we finally found the combo that worked for her. We figured out what made her symptoms worse and we got through - we knew we would, we'd done it before with Kennedy. But Zoey was different. Her pain threshold seemed either incredibly low or her pain was just that intense. Her startle reflex was and is super sensitive, leaving her literally jumping in her sleep. Tearing aluminum foil is a torture instrument for our sensitive little girl. We also began to notice her lagging in her motor skills and with some discussion had her evaluated by birth to 3. We were right, she was behind in her motor skills and her communication. She qualified for services. They noted a left side weakness/ right side dominance, which should not happen at this young an age. We noticed an abnormal tongue thrust as she tried to eat. They noticed her tongue always coming to the left. We noticed her having weird body jerks and shudders. They were in agreement with our finding of her rigid and jerky body movements. They have been a blessing, because when you have children with special needs already, you start to question if you are over-thinking everything.<br />
<br />
You question if she's really behind or you're just sensitive to it. Well meaning friends and family try to assure you she's fine and she'll catch up. But I'm her mom, and I know something is amiss. I don't know what it is, and I don't know if we'll get any solid answers, but I do know where to start. So, since Zoey started seeing Dr. Poduri at 4 months for the startle spells that looked like spasms, I contacted her with all the information. She immediately agreed that an MRI and 24 hr Video EEG were in order. Today was Zoey's MRI. If you've never done this procedure with an infant or small child, allow me to enlighten you! Due to the fact that you must stay completely still for the MRI, the youngest patients must be sedated. At Molly's age many of the kids can lie still themselves or like Molly, just require a local anesthesia, but at Zoey's age medication is injected.<br />
<br />
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxeSJDD7fNneAzE_wz8iOD2wzXitKZqSX6rY-27DiHLk2V4i7rNdxnLOZVgnJ-qzoGrsYfg-xPPD-kdcgzPXw' class='b-hbp-video b-uploaded' frameborder='0'></iframe>This sedation requires the little ones to fast. This meant Zoey was allowed nothing after 5:30am and her test was not scheduled until 12noon! I woke her at 4:30 and shoved bananas and rice cereal down her throat and managed to coax 2oz of formula into her. She did surprisingly well and was only mildly cranky before the test. I thought she was good to go. She started amoxicilin on Sunday for her 3rd ear infection and hasn't had a temp since Monday night. She had a slightly drippy nose today and coughed once or twice, but seemed in good spirits. She even really crawled forward for the very first time today!<br />
<br />
My dear friend Amy accompanied me to Yale while Poppy took the job of taking Kennedy to school and then picking both Molly and Keddy up at the end of the day (my dear husband has to take the next two thurs/fridays off for the VEEG and Butterfly bash).<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw6PpV5Qzih9a48ERH00fADbxnh3ewDE2Wux1Y6E0xAjujV6C_A0Sr3PWsNetsMPJzFYjt7EQAp7QNvk5HJVGHQMVw-aVhs-WD9rJzXqajnjSp1wlqBnwAZVqQ8TEGRuW1gK7AqOrMEHA/s1600/photo+(6).JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw6PpV5Qzih9a48ERH00fADbxnh3ewDE2Wux1Y6E0xAjujV6C_A0Sr3PWsNetsMPJzFYjt7EQAp7QNvk5HJVGHQMVw-aVhs-WD9rJzXqajnjSp1wlqBnwAZVqQ8TEGRuW1gK7AqOrMEHA/s1600/photo+(6).JPG" height="240" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAO176lMw-Ht-0My9-AsNe71-CVioEsGhwl_DH9yu8qa-lzzPH2yzLK9O5mWYfsJnI9JsKRd3M3PgWn_1daylbnyDPlQgxE1FHl-RGiKM0Ro0ey3P_JNyhXo6I2SOYfJKWaIQel1_2jF0/s1600/photo+(5).JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a>Zoey had it rough. She apparently has really tiny veins and the extremely experienced NP Jeff (who has sedated Molly many times since she was 1) had a lot of trouble getting the IV in. Poor thing was traumatized as they tried twice in her hand and finally succeeded in her foot. I felt horrible as she screamed and tears ran down her face - there was nothing I could do but kiss her head, sing songs in her ear and wipe tears away. I've gotten too used to being able to reason and explain these procedures away and watch with humbled pride as they are shouldered - but there is no doing that with a 9 month old. Thankfully they administer a pain med and the sedation med as soon as the IV is in place and working. Amy and I put in our ear plugs and leafed through Food Network magazine while keeping an eye on the little feet poking out of the machine. And wouldn't you know those little feet went flying in the air half way through the test. In came Jeff to administer more sleepy meds and the contrast. She settled back down and we were soon transferring her to a gurney and sitting in recovery waiting for her to wake up. She did as they un-taped her ear plugs. She was a dead weight lying in my arms as the meds had robbed her of a lot of muscle control. She took her bottle and I started to notice a worsening cough. We moved her to her carseat and she settled right back down for a nap as we waited for a copy of the MRI on disc for OVER AN HOUR!<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3B3btnHBfHhRD_fO24ds3bmGtM5y2LchMRv07c54llHLlW5g6wbJucOmmxyKh9Rz6QUN0NM4f2Xl46nhZDMmc4F-o_wNaw0qJ-hVB0I842fLO3G_52xLVLZjw6fB7F0wjQYXYr4BabIA/s1600/photo+(3).JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3B3btnHBfHhRD_fO24ds3bmGtM5y2LchMRv07c54llHLlW5g6wbJucOmmxyKh9Rz6QUN0NM4f2Xl46nhZDMmc4F-o_wNaw0qJ-hVB0I842fLO3G_52xLVLZjw6fB7F0wjQYXYr4BabIA/s1600/photo+(3).JPG" height="200" width="150" /></a>The ride home provided us with Zoey's drunken sounds coupled by her increasingly troublesome cough. By the time I got her home and settled and gave her dinner, the cough had me really worried and she now has a temp too. So, needless to say, even though she's in bed, her video monitor is on full volume and constantly within my peripheral vision. She is restless but tired and definitely congested! Good thing she's tagging along to Dr. Carlson's tomorrow!<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIyK9i-skGJWbZm1WnzBK7E15pZXbR1ucQhYABqoofY7wCxcsuF3uqt9JTsSJuR_11hpH_wRr2jxvLt4pYXyaUZUUr1ymDshW2auDORyFRWgpW96PWV0KdOdH0gfkl-TjOkih-WGx_3Cc/s1600/photo+(4).JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIyK9i-skGJWbZm1WnzBK7E15pZXbR1ucQhYABqoofY7wCxcsuF3uqt9JTsSJuR_11hpH_wRr2jxvLt4pYXyaUZUUr1ymDshW2auDORyFRWgpW96PWV0KdOdH0gfkl-TjOkih-WGx_3Cc/s1600/photo+(4).JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Poor drugged up baby is ready to go home!</td></tr>
</tbody></table>
<br />
<br />
<br />
<br />
<br />
So, needless to say, because I am your mom - I live these tough days with you, but I also get to live the happy moments. My emotions are constantly all over the place, but I seriously think that is what it means to be a mom. Your job is to help your kids grow up to be the best possible person they can, to discover their fullest potential, to keep them safe, to provide for them, to love them unconditionally, and to always just be Mom. Our days are not easy, but they could be harder and most importantly they are always filled with love!Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com0tag:blogger.com,1999:blog-5189913051878988200.post-30829471300115296512013-03-06T06:50:00.002-08:002013-03-06T06:50:20.658-08:00"I'm fine" Because I am your mom, I know "I'm fine" doesn't mean you are. I expected this to come much later in your life, perhaps in your teenage years, when you truly don't want to share your every waking moment with your mom. But, today, this is different. I looked at your face when you woke up and I looked into your eyes. You are in there somewhere, but not completely, it's almost like half of yourself forgot to wake up this morning. You literally dragged yourself through your morning routine, and instead of the incessant banter and bouncing, I saw lethargy and fatigue. Your eyes looked heavy, and you complained your leg hurt. But, I sent you to school. I'm not sure what's going on, but as you hugged me good-bye and then stumbled down the path to the 2nd grade door, you called out "I'm okay Mom". And I hugged you one more time, even tighter because I could see the weakness in your body today, that you were having trouble walking in a somewhat straight line.<br />
<br />
Because I'm your mom, you're "I'm fine", doesn't cut it. You've been through so much in your short life, that your tolerance for pain and different feelings is way too high. Because I am your mom, I will worry about you all day, more so when you are not in my line of sight! But, because I am your mom, I will send you to school, and I will hope for the very best and be prepared to fly down there at a moment's notice.<br />
<br />
I'm not sure what's going on with you, but our loyal Dr. C will check you out on Friday and hopefully he will have some insight. I love you big girl. Please be safe, but know Mommy is right here, to pick you up and kiss away whatever boo-boos I can. And the ones that I can't fix myself? I will never, ever give up trying to find someone who can.<br />
<br />
On days like this, it is like sending you to school for the first time all over again. Where I have to trust somebody else to take care of you and to protect you. I know this is what is best for you overall, that I can't give you everything you get in school, but I still wish I could just be with you all day.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com0tag:blogger.com,1999:blog-5189913051878988200.post-26866093881724371262013-02-26T16:57:00.000-08:002013-02-26T16:57:57.371-08:00feeling like a failure<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhKVOwmTJ78SrAZheGWMuc3Dyit6o7xwoAale1i0-vEppEEW0axUhK7zdTlvJ3xltH-id7jOmdt3exyqr1gfidsSN84UDlBwWcVlfT1tLWOd0cf7xaWhEaWsGTPQIJM39S8uLesxO-hVY/s1600/100_9508.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhKVOwmTJ78SrAZheGWMuc3Dyit6o7xwoAale1i0-vEppEEW0axUhK7zdTlvJ3xltH-id7jOmdt3exyqr1gfidsSN84UDlBwWcVlfT1tLWOd0cf7xaWhEaWsGTPQIJM39S8uLesxO-hVY/s1600/100_9508.JPG" height="148" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My first baby</td></tr>
</tbody></table>
Because I am your mom, sometimes I feel like a failure. Before motherhood, I was a born fixer. I saw a problem, I drafted a solution, and usually I fixed the problem or at the very least, improved the situation. But that isn't the case anymore. Now, some days all I see are problems and I cannot even get to the point to draft a solution!<br />
<br />
My sweet Molly, it breaks my heart watching you sink further and further inside yourself. I can see the storm firing inside your head, I can see you unable to stop yourself. It hurts watching you fighting a brain that won't listen. I want to research, I want to ask questions, I want to find you help. But I don't even know where to start or which questions to ask. Are you zoning out? Are you having silent seizures? Are you getting sick? Is this what your personal picture of autism is going to look like? Is this our new normal or just a cycle? Do you need medication? A test? Is there an answer for any of my questions and how do I find them?<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibXUXSjOLF5lR2-c9O-RZVTiuQlz7r2rOlvNzSXtxkB1TmkOuEOKCBfJpLC9H8eyp3aOZV7UHxDjGaKzTZc7sORosdSy1ilpacby-OSBIBFq1utY0JelF0zLIGafBsF4t3R6bzwrsnvag/s1600/Molly+2nd+grade+(2).JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibXUXSjOLF5lR2-c9O-RZVTiuQlz7r2rOlvNzSXtxkB1TmkOuEOKCBfJpLC9H8eyp3aOZV7UHxDjGaKzTZc7sORosdSy1ilpacby-OSBIBFq1utY0JelF0zLIGafBsF4t3R6bzwrsnvag/s1600/Molly+2nd+grade+(2).JPG" height="320" width="222" /></a>I call a doctor, they tell me to call another doctor. They tell me to document, to wait, that we can try this test or that treatment. But what is the right answer? The behavior specialists think seizures, the seizure specialists think behavior and I do not know what the right answer is. <br />
<br />
I feel like I have failed you Molly, because we've been in this cycle before. It's a downward spiral where the only thing that calms your body is holding an Ipad, and even then I am watching you mindlessly talking to that Ipad right now. You aren't acutely ill, but you aren't well. You respond to me, but your thoughts are nonsensical and mostly fantasy. It's so hard to watch, because it is not like this all the time. You can't focus, you can't stop moving. You stop mid thought or in the middle of reading a sentence and just stare off unsure of what happened. You're scared of everything. Loud noises, a move we aren't making, being in a show, of traffic and even of death. Some of your fears are fantasy laden and make no sense and some are so real, it's hard to calm you without tears in my eyes. Before this cycle hit, you were still fixated on theater and plays, but you talked to me and we had conversations. Before this cycle hit you were able to focus long enough to read a story, or learn a new skill. But none of that is happening right now. I feel like you are slipping away from us and that scares me.<br />
<br />
So what do we do? I know what we don't do - we don't give up!<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirT0USggnwwqc0tf4IjvQGJ8Qi98MEKNlTjJxXljVQ-eipj_vsWdCL1VVD7XTd7x0UxLyEJY1ijljGjI6GLXiHxdGXmhEY0RqszfSVgmSJq1VkDeMxwGsbAimva6ImnIqdtPZJ-27UpLc/s1600/IPHONE+PICTURES+146.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirT0USggnwwqc0tf4IjvQGJ8Qi98MEKNlTjJxXljVQ-eipj_vsWdCL1VVD7XTd7x0UxLyEJY1ijljGjI6GLXiHxdGXmhEY0RqszfSVgmSJq1VkDeMxwGsbAimva6ImnIqdtPZJ-27UpLc/s1600/IPHONE+PICTURES+146.JPG" height="200" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKfaiopGxrBC8BkJDvZluvJXZlZvNKaajhRybKysxKgNHOmaBMTYc2Txw7zX8nDA9TUfOdiL1qU6kP4Vu17qDOWer5i6Uo90ig-FDuyuoCWXZZUQt7EZm_e_kmLa_Tuglq8fgu5AfBplA/s1600/IPHONE+PICTURES+156.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKfaiopGxrBC8BkJDvZluvJXZlZvNKaajhRybKysxKgNHOmaBMTYc2Txw7zX8nDA9TUfOdiL1qU6kP4Vu17qDOWer5i6Uo90ig-FDuyuoCWXZZUQt7EZm_e_kmLa_Tuglq8fgu5AfBplA/s1600/IPHONE+PICTURES+156.JPG" height="200" width="150" /></a> I am not one to wallow and I don't let failure keep me down long. I absolutely hate this helpless feeling, so I will reach out to every contact I can think of, every doctor or educated individual and find out what we should do. Because even though I feel like a failure right now, it is also my job as your mom to be your champion. Although I may occasionally fall off the white horse you put me on, I promise to always be there to do everything I can to give you and your sisters the best of everything.<br />
<br />
Please know, the best of everything does not mean designer clothes and wildly expensive gifts; it means love, happiness, and self-confidence. It means that if I know something is not right with your health, either physically or mentally, I won't rest until we get answers. It means that you will never know a world where you are not loved and cherished every minute of every day, even when I am banging my head against a wall in frustration.<br />
<br />
Sweet Molly, you are my oldest. You have taught me the most and you have paved a path for your sisters to follow. And although I have many worries for your sisters, from Kennedy's behaviors and learning challenges to Zoey's various health and development questions; you are at the forefront of my mind this evening.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkJYCDXQJhBP_LQ0rZ2KZnXhK6abZlivYfAgynNu6Gvdu9eNiMIMB6T3YsgkrYHLkcrIMiQpuYVv409jnAMCrnKU200a4e2v968AFjP3Pd4qGJrp489U2Kke2HCM8U5oyzXGohPxIT4gY/s1600/IPHONE+PICTURES+212.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkJYCDXQJhBP_LQ0rZ2KZnXhK6abZlivYfAgynNu6Gvdu9eNiMIMB6T3YsgkrYHLkcrIMiQpuYVv409jnAMCrnKU200a4e2v968AFjP3Pd4qGJrp489U2Kke2HCM8U5oyzXGohPxIT4gY/s1600/IPHONE+PICTURES+212.JPG" height="320" width="240" /></a></div>
Because I am your mom, I do feel like a failure sometimes. But then I look at your smiles, get a kiss or a hug, or hear you do something that warms my heart and I know I'm not a failure, I'm a Mom. It's my job to feel your pain and heartache and to share in your joy and triumph. So, I just need to keep working!<br />
<br />
Because I am your mom, I promise to always love the three of you to pieces and to never give up!Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com4tag:blogger.com,1999:blog-5189913051878988200.post-82200060775844491492013-02-21T17:48:00.004-08:002013-02-21T17:48:45.034-08:00Because I am your momI've been battling a case of writer's block. Whether it's fatigue, the desire to not sound like I'm complaining, the inability to focus my thoughts, or just not knowing where to start; one thing is for sure, it is not for a lack of something to say! So, I figured, I'd just start writing and see what happened. So, because I am your mom...<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfifRBfglzTY6pfcaWtQLYWF-l0bHilcYEMCzgZvHc1ynzKJrUwLPwkGFd4sjeu23Am1qvKLIJSyIERg-i4US4Oxo0QhFFvqTNuFIPnLDP4LDqaRsRrNzjOt8VqGNgZjhJEkKnVnM1MAI/s1600/kids+valentines+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfifRBfglzTY6pfcaWtQLYWF-l0bHilcYEMCzgZvHc1ynzKJrUwLPwkGFd4sjeu23Am1qvKLIJSyIERg-i4US4Oxo0QhFFvqTNuFIPnLDP4LDqaRsRrNzjOt8VqGNgZjhJEkKnVnM1MAI/s1600/kids+valentines+2.jpg" height="250" width="400" /></a></div>
Because I am your mom, sometimes I have to make the difficult decisions. I have to decide when to stand up and fight, and when to let you fall. I have to decide what is good for you and what is bad. I have to decide where we go, what we do, who we see, and when we do it. I decide the paths we take together, but I do not control where those paths will lead. <br />
<br />
For the last seven years I have begun to understand the complexities of parenthood and how unique each situation is to those who are living it. I can read every parenting book and article out there. I can talk to experts and other parents until I am blue in the face, but they are not living my life and I am not living theirs. I try to glean whatever tidbits others have to offer that I think will apply, and store away those that I know have no place in this house. If I'm asked for advice, I try to say: this is what we do, but you need to make it your own. My world is one of ordered chaos. We have challenges for sure; but we have joy, love and happiness above everything. There are days when I want to wallow in the unfairness of life, where I want to cry because my child has to struggle with this or that. These are the days I am forced to stop myself and watch her struggle, because it is then I truly realize the amazing gift I have been given.<br />
<br />
It happened yesterday. After staring at the clothing I picked out for a good ten minutes, something new happened, Molly got dressed. And the light in Molly's eyes when she realized that she put her pants on the right direction all by herself, even though it took five minutes to, was priceless. I could cry over the fact that it takes my seven year old five minutes to just put on her pants, and that I then have to go back and fix them; but instead I'm throwing a party because SHE FREAKING PUT ON HER OWN PANTS!!!! It may not happen again for another week, but she did it and I don't care!<br />
<br />
If you know Molly, you know she's a sweet soul. You can't help but love her and you want to just hug her to pieces. I know, because this is how I feel about Molly. Yes, I get frustrated that I have to tell her the same exact thing 5 times in the same minute and then repeat it again. Yes, I get annoyed by the constant movement and running storyline that never seems to quit. And, yes I want to cry when I think about how many years we've been pursuing answers for her, and how many times we have been so close to understanding and how many times we've had setbacks. We're certainly in a setback right now. People, doctors, others will say; well is she currently having seizures. Our answer, we don't know? She isn't having convulsive seizures at this moment, as she did when she was younger. I am not convinced that she isn't having electrical discharges deeper then the EEG probes can read, and I am not convinced that she isn't having breakthrough seizures on occasion; but no, she is not actively seizing. But, the seizures are part of something bigger that we seem to be getting closer to discovering with the help of her doctors. It's not just autism, it's not just seizures, it's not just adhd, it's not just dysautonomia (which we are investigating), it's not just the sleep issues and the sleep apnea and whatever it is that causes her to violently slam against our shared bedroom wall, it's not just the learning issues, the speech issues, the motor issues, the asthma issues, and crappy immune system. It's all of it and trying to give my beautiful daughter the best and most fulfilled life she could ever ask for.<br />
<br />
So yeah, I have to make the decision of which doctor do I turn to next. Do I call the doctor for this? or do I wait to see what happens next? Do I add a new medication? Do we try this treatment? This test? It is like a choose your own adventure book, but I have to choose for her and the path is never clear.<br />
<br />
And then there are the other 2 to think of. It's becoming increasingly difficult as Kennedy gets older. Whatever issues Ked had as an infant and toddler seem to have resolved themselves with the exception of her lactose intolerance! She is outgoing, social, temperamental, stubborn, active and caring. She is a fire-ball and full of energy. She never misses a beat. She loves her sisters and just wants to play with them. She dresses herself every day, a comparison it's hard to ignore as she is 3 years her sister's minor. She is very independent and capable of so much. It's a delicate balance to allow Kennedy to live a "typical" existence while walking that tight-wire of helping Molly to achieve within her own abilities. <br />
<br />
Oh and while we're adding to the mix, we decided it was a good idea to have a third?? I must vehemently state I DO NOT REGRET HAVING ZOEY! I love that little girl with all my heart, but I need a clone or some extra hours to handle what is being put on my already full plate! Zoey screamed her sweet little heart out from the day she was born until shortly after her 6 month birthday, unless she was being bounce-walked continuously. A milk-protein allergy, GERD, and a high maintenance baby with a super sensitive startle reflex and hypersensitive pain intolerance seem to be what that was all about. Now, just shy of her 9 month birthday she has qualified for services with some significant motor and cognition delays, and will be going for an MRI and Long-term Video EEG because of some very suspicious episodes among other clues. Again, this doesn't make her who she is, she's Zoey. My beautiful, bright-eyed, silly baby girl. I have no idea what her story will look like, but because I am her mom, it is my job to make it the best and beautiful story it can be.<br />
<br />
As I prepare to kiss my 2 oldest girls to sleep, I do as I do every night and kiss them with a heart full of love. Molly, Kennedy and Zoey: Because I am your mom, I will never give up on you. I will fight for you with every ounce of strength I have. I will tell your stories, I will help you write your stories. I will listen, I will learn, I will be BRAVE. Because I am your mom, I am a better person. I love you.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOcJYdYhnwvBwVsL2qbZOoc47Pq46jn-fFuDu959DMJA7nEcCeuEXGunKlrLSpndkjc2EKe25Vm5jlTQK0o-Ly6Nawb48X9pxVnSbb-qj9S5YtWUPOEOO6c7IQ9Eke_JRQBQQbW_Z3OAo/s1600/photo+(6).JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOcJYdYhnwvBwVsL2qbZOoc47Pq46jn-fFuDu959DMJA7nEcCeuEXGunKlrLSpndkjc2EKe25Vm5jlTQK0o-Ly6Nawb48X9pxVnSbb-qj9S5YtWUPOEOO6c7IQ9Eke_JRQBQQbW_Z3OAo/s1600/photo+(6).JPG" height="300" width="400" /></a></div>
<br />Amandahttp://www.blogger.com/profile/11689999943163667124noreply@blogger.com1