7/21: Update

Anya is still doing well.  She slept great last night.  The night we got home from the E.R. she did not sleep a wink.  She finally went down at 10:30 yesterday morning.  Man, this girls got some stamina..

 

Katie and I are getting increasingly frustrated as we see time slipping by and Anya's window of neurological development close a little bit each day.  Anya will be 14 months old tomorrow and she has really only made extremely mild progress at best.  Here is a subject/qualitative assessment of her developmental status.  We will redo this list every few months to see were she's at:

 

Scale of 1-10 (10 being the best or age appropriate)

• Head Control: 2/10 Although there are certain time she can hold her head up decently, they are few and far between.  Sometimes when she is laying on your shoulder she'll pick her head up and look up for maybe 20 seconds but that will be about it for that day, and even that is maybe twice a week tops.  Generally speaking her neck remains limp the rest of the time.
• Eye Control: 7/10 This has by far been her greatest progress.  6 months ago I would have given her a 1 or 2.  Her eyes where extremely slow to respond to light (dilating) and she couldn't/didn't track object much at all.  We did a lot of dark-room exercises w/ her to allow her to focus on a lit object and she progress with that nicely.  Today she can and does track any object even in an open area where there are outside distractions.  She doesn't do so 100% of the time though so I think it is more just a lack of interest than inability to do it.
• Hand Dexterity: 2/10 She has made some progress here as she would have probably been 0 or 1 6-months ago.  You can see her now at least try to reach for or hit a toy on occasion but it seems to take a lot of focus to do so.  She will stare at the object and frustratingly try to bring her hands together for better stability (her movement disorder is preventing her from any fluid, direct movements), she then holds her hands together and slowly and jerkingly straightens her elbows until her fists hit the object.  She does seem to show a little excitement when successful by giving a couple quick kicks with her legs.  She can momentarily hold an object (10 seconds perhaps) if we place it in her hand firmly.  She can not however pick up objects on her own.
• Legs: 1/10  Although she does have some leg strength she does not seem to have much control For example, if we hold her up and try to get her to support any weight, she can not. Her legs become completely limp.  On her belly she may try to pull her legs in a bit but its only enough to wiggle her little butt around a bit.  Far from enough to get a crawl out of her.  On her back she seems to do the best. She can kick a little and when you hold her feet and pump her legs she occasionally offer some resistance.  A hand full of times now she has been in her car seat or bouncy seat and she will kick frantically with excitement and get the whole seat bouncing or rocking.  She seems to have fun doing that.
• Arm/Chest: 2/10  If it were based on strength alone I would give a 9/10 but her ability to coordinate that strength into any useful movement is nil.  Although several weeks ago she was able to bare a little weight on her forearms, it has not at all been consistent nor for much duration (<10 seconds).  I really can say she has done it at all since then.
• Digestion: 4/10  Although she is still vomiting a lot I would say she is getting much better than where she was 6 months ago.  She no longer or rarely shows signs of abdominal discomfort and she produces far less gas that we'd need to vent out her g-tube.  She has much more regular bowel movements average 1/day.  She is rarely constipated where she used to not go for 3-4 days at a time.  She digests her current formula (metagenics UltraCare for Kids) very quickly where her belly is empty within an hour after a feed.  Other formulas just sat in her stomach for several hours making it hard to get in her nutritional requirements.
• Smiles & Giggles:  4/10  On average she probably smiles twice/day and giggles once/two-weeks.  We are very thankful for these but feel like she could show more signs of awareness to her surroundings (although maybe we're just not that funny).
• Skin/Complexion: 8/10  6 months ago this was probably a 4/10.  She still has small occasional rashes but they are so much better then they were.
• Sleep:  5/10  Although she is still not getting adaquit sleep, her sleep schedule has gotten much more consistent.  She typically goes to sleep around 8pm and wakes aroung 4am everyday.  She will then (typically) take a nap around 9:30-11am.  Occationally she takes a second nap around 5-6pm.  She still pulls all-nighters once every 1 or two weeks, especially following an episode of being sick.
•  Basic Skills: Rolling over 1/10; Sitting up 0/10; crawling 0/10; Reaching for toys 1/10; Holding in a pacifier 3/10; walking 0/10; Feeding orally 1/10.

I just want to clarify that I am not rating these to be pessimistic or negative of her development.  I am doing this because we are still, despite the slow start, working towards a full recovery. We need to know where she is at along this process to help us identify what might be helping.