Thursday, July 23, 2015

in 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.

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.

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!

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.

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.

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.

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!

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!


Special treat for dinner with Daddy!!

Wednesday, July 22, 2015

and sometimes we have nights like these

Molly 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.

Molly still takes anti-epileptic drugs. Molly also has autism, temperature regulation issues, gait abnormalities and more.

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.

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????

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.

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.

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.

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.

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.

Hugs <3

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!

And, can someone tell her that now it's 1:10am and even though her room is adorable, she should probably go to sleep!

Friday, July 3, 2015

Holidays the Renz way

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.

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.

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.

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.

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.

Wednesday, July 1, 2015

Let's do the Zoo!

 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.

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.

We headed to the Beardsley Zoo 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.

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

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.

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!

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???

Monday, June 29, 2015

The Day That Wasn't

Today 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.

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".

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.

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!

Friday, January 10, 2014

"Why don't you just give up?"

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.

It's taken me close to 24 hours to process the discussions we had during this appointment.

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.

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.

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?

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.

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.

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.

I know we see a lot of doctors. Trust me, I get the bills.

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.

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?

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.

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....

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.

Thanks for listening to my stream of consciousness.

Monday, November 18, 2013

this kid has timing

From 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.

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.

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.

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.

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.

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).

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.

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.

And if you're interested in reading more from me, I am a regular contributor to the blog:

<3 Amanda