Friday, July 20, 2012

21 Months

Scarlett is 21 months old!  She weighs 22 lbs, 14 ounces.  I'm not sure how tall she is, but certainly taller than before -her pants all hit just to her ankles instead of needing to be rolled or scrunched.  She hasn't had any new teeth come through - still 16 (which her pediatrician was surprised to see; apparently more than average, especially with her history), and she still grinds them like crazy.  She's wearing 18 month clothes and size 4 shoes.  She likes to stand holding the windowsill or crib rail, but has still not decided to crawl anywhere.
Scarlett and Cosmo were entertained by the street resurfacing this week
This month we felt very vindicated in our choice to change her diet from Pediasure formula to all blended foods.  Since her only struggle with eating is oral-motor skills (she doesn't choke, doesn't aspirate or have trouble with textures), every doctor has been on board with the change, and is happy as long as she continues to make growth progress.  We don't count calories, track protein, carbs or fats.  Her daily blends incorporate everything from whole milk, yogurt and applesauce to quinoa, nectarines, prunes and kale; we add milk powder (for extra calcium without volume) and flax meal (for omega-3s and fiber) to most meals.  Since we started back in May, She has gotten taller and gained more weight than she has over the previous 3-4 months combined (back onto the growth charts, between the 10-25th percentiles); her hair is growing like crazy (we're debating the first cut soon!), and her nails are stronger.  She hardly ever throws up anymore, and she seems much more alert, more engaged in the world around her, and has more energy than ever before.  She's still primarily a cheerio, cracker and dried fruit eater, but she is getting better with spooned purrees, even eating it directly from the little squeeze pouches when she's really interested.

She's turning into a two-year-old before our eyes, insisting on more independence, but needing comforting and reassurance from us as well.  I feel like she is often frustrated by her baby body wanting to do big-girl things, wanting to communicate but not being able to find the words (and not signing at all yet).  As she's getting bigger and older, her delays are becoming more apparent and more difficult to accomodate with standard baby gear.  She's working hard to stand and walk, but she's outgrown most baby walkers, so her physical therapist got her a mini gait trainer to allow her to practice and strengthen her legs and hips (as she tends to lean forward rather than stand straight).  She's started a sneaky little game of pinching, then laughing when we say "no!" or "stop!". . . not fun at all, and something we are working hard to redirect.  She's getting trickier, too: tonight, she was playing with the phone in my lap.  I grabbed it and hit "END" when I heard dialing - she had hit the speed-dial for 911!  I thought I caught it, but when a police officer knocked a few minutes later, I was proven wrong.  We all laughed, assured him it was just our sneaky baby, and went back to her bath.  I hope all future encounters with police on her behalf are so simple!

The older she gets, the more pronounced her delays appear, especially when we see what other "typical" kids are doing at her age.  She's still very much a baby in a lot of ways; all of the most recent rounds of testing put her at about 8-10 months developmentally (areas differ - lower on gross motor and receptive language, higher on fine motor and expressive language).  She seems to be moving in slow motion, both developmentally and physically - she's taking her time, her brain acclimating to every stage for a while before moving on.  Everyone is still very optimistic about her long-term prognosis, but we often feel bogged down in the daily hyper-awareness of her deficits.  Despite her frustration and ours, we continue to press ahead.  She will begin preschool (at her current school for kids with hearing loss) 4 days per week in just a few weeks.

It has been a year and a half since the tumor was removed.  So much has happened since then, and we are so glad to be where we are versus where we could have been.


Unknown said...

So happy to hear she is doing good. I wish I could say I know how you feel with her being behind in so many ways but what I can do is tell you how proud you should be for all you have accomplished with her thus far. I admire you for the amazing strength the two of you have shown. I myself would not have been able to be as strong as you... Hope the rest of her life becomes much easier on all of you and she can begin to live a normal life the best that she can =]. Our love and support, The Courtney Family

DiJe said...

It's so good to see these updates! Wishing her the best, smoothest start at preschool. And way to follow your gut with the feeding stuff. Sending you virtual high-fives. :p

Unknown said...

As I saw the title of this post my first thought was "amazing, the little girl who was given a death sentence at two months old is nearly two!"... I can only imagine when you are living it how easy it would be to get bogged down in the day to day of it all, but if you can, take a minute to remember what a miracle life truly is right now. And maybe deduct all that time in treatment from her age (for yourself) because she just didn't get to practice all those skills she is "behind" in. When you do that, I'm pretty sure she is actually ahead! =) Scarlett is amazing, and so are her parents. There may be long term or even permanent effects, but as an outsider I have so much hope for your little girl. I hope that helps! =)

Shan said...

I know you know this... she is awe inspiring. No, she's not doing what other kids her age are doing, but look what she's doing after all she's been through. Amazing. Scarlett is so strong and she's surrounded by amazing, knowledgeable, dedicated people. She's so lucky to have you for parents.

Stephanie said...

Yay! This is a great update. I hope she continues to make great progress and catches up with the other kids on her own time. I often see "pray for Scarlett" still on many siggys and do wonder how she's doing. Thanks for the update. What a beautiful little girl she is. :-)

MC said...

Thanks for the update mamma!She's a funny girl! Scarlett is a strong determined young lady, and I'm sure she'll continue to amaze you and all of us reading :)

MC said...

Thanks for the update mamma!She's a funny girl! Scarlett is a strong determined young lady, and I'm sure she'll continue to amaze you and all of us reading :)