sometimes 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.

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.


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.

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.

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.

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.

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.

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!".

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!

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!

you think I can do it all

Because 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.

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.

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.

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.

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.

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.

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!

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!