Good things:
+ Addison's recent diet change - we stopped all table foods and are feeding her solely Neocate and Neocate Nutra, and almost instantly, she seemed stronger and more energetic. Then she started walking, almost overnight. Then we started to see the scale creeping UPWARDS for the first time in months.
We have seen nothing but continued growth - since January 15, she's gone from 16 lbs 1 oz, to 17 lbs, 10 oz!!! Her legs are even starting to look a little chubby... I cannot believe it. Still no idea why she can't tolerate or 'use' normal food properly, but I honestly don't care that much since its working right now. Not a long term solution obviously, we don't want her on formula forever, but for now.... i'm just happy to see her growing.
+ Addison has TWO signs now.... we've been in therapy since October 2011, and its been a very very slow progress. She is signing "more" and "please". She has signed "Mommy" once or twice, but doesnt seem to be able to hang on to that one yet..or how to use it appropriately.
+ She's making great progress in physical therapy, they are so happy with how well she is moving and starting to do more coordinated things. Last week she finally figured out how to crawl through a tunnel and one of her favorite OT activites is playing with beans.
+She is attempting to copy several things - putting on a hat, she mimics coloring motions with a crayon now too. So we are seeing much more progress in terms of her being able to translate seeing somethign happen and repeating it for herself.
+We have ourselves a music lover. She never showed any reaction to music or sounds til about 13 months and then suddenly started 'dancing' her head whenever we would sing or play songs for her. Now she LOVES to be sung to and kindof tries to vocalize a little herself when I sing the ABC song.
Things to pray for:
- Addison's starting to have a hard time with balance/perception. She's started running into things and falling down a TON. She's not very adept at 'catching' herself or breaking her fall with her hands so she keeps hitting her head and ending up hurt. Thankfully, my mom is sending her helmet back down here so we can protect that growing brain a little better. I am really hoping this is just due to the change in our routine and poor sleeping habits.
- She is starting to make a lot of facial gestures that look more syndrome-like I guess, for lack of a better word. Right before we picked her up, my mom noticed her tongue hanging out of her mouth alot and this has continued the past few days, along with lots of drooling and licking and mouthing. I think this may be a sensory stimulation thing since she's no longer able to self-feed. But it makes us nervous because nothing about her appearance has ever really given away that she has developmental issues. In lieu of other issues, it wouldn't be a big deal (many kids mouth things, lick things) but it seems really awkward the way its hanging out of the side of her mouth and isnt very controlled looking. She also letting water/juice taken from a sippy cup run openly out of her mouth, so I am wondering if its an issue with her oral tone worsening.
-No progress in the speech area, minus the fact that she can throw a world-class tantrum now when she's angry. We actually have emotions now, which is nice to see her sharing a range of feelings with us. No babbling other than the occassional 'daa' noise, and no words or comprehension of words yet other than the signing of "More" - which she definitely understands in relation to wanting something, and will sign appropriately with a little suggestion from us.
-Raynauds is bothering her hands and feet a lot. She often stares at them and shakes them,or picks at them.Turning blue a little less frequently since weve started making it a point to keep them not exposed to cold,etc. Hoping to find a specialist soon who can address this issue a little better.
-Stooling was a mess and we are back to irrigating a couple times a day. We stopped during my recovery since I couldn't really sit up long enough to do it and had her back on laxatives. Our next cleanout yesterday night was a huge nightmare, so we know yet again that the laxatives get out a little poop but she retains enough of it to keep her sick. They are trying to reschule our GI appt and some other stuff and I am hoping they have a better idea on conquering the C-Diff.
She's been quite the social butterfly here, cooing and making friends everywhere we go. She is enjoying extra time spent with Daddy, but has been attached to Mommy's hip and hates when I even go to the bathroom without her tagging along. Her favorite thing to do now is look at books. Tomorrow we are taking the kids to the aquarium.... wish I could walk the whole thing instead of sit in a wheelchair, it would be nice to get the exercise! Addison LOVES fish, she is totally mesmerized by them - I cant wait to share some pictures with you tomorrow, she will be so happy.
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