21 months actual/18 months adjusted

Friday, October 19, 2012

"If the future seems overwhelming,
remember that it comes one moment at a time."
~Beth Mende Conny

Oh, how I wish I could have seen this picture 21 months ago today. Pure inexplicable, abundant, unimaginable, mind-boggling....JOY!

21 month/18 month adjusted Stats:
No weight gain again, still hanging around 22.5 lbs, but 31 inches long.  She is long and lean.
Still on nap time and night time O2 of 1/2 liter.  Alli failed her sleep study last month and was given a new diagnosis of Moderate Obstructive and Central Apnea.  We're adding the ENT back into the mirage of specialists who follow Alli.  
She was approved for Synagis for a second RSV season and will begin those monthly injections on November 13!   
Alli is getting her longest break in between Cardio appointments, ever!  We don't go back until January to see Dr. Sharma.  At her last Echo, she still had moderate Pulmonary Hypertension, but was under control with Viagra. 
Alli is still 99% g-tube fed, but has made great strides in the presentation of her food.  She is leaning towards the spoon and even opening her mouth most of the time to accept food.  Her gagging has decreased tremendously!  Her chew and swallow is still very delayed and it takes several minutes for those to even begin to initiate, but she has stopped spitting food out (for the most part). 
I also began adding blenderized food through her tube this past month, in hopes to add more calories for weight gain and to give her body something besides Pediasure. 
She is still fighting severe sensory issues which allow her not to consume more of her nutritional needs, but I'm remembering that comes one moment at a time. 
Motor Skills:
Alli's fine motor skills are still severely delayed, but this month she is beginning to realize she has a thumb and is using it more.  We've been focusing on breaking her hand up since she scoops everything not realizing yet what her hands and fingers can actually do. 
In Gross motor skills she is coming along great.  She's a champion crawler and cruiser.  She transitions from different furniture and toys nicely.  We're beginning to see her high tone areas more and more and believe that leg braces are indeed in our future.  We'll be giving her a few more weeks, but this will probably be the path we take. 
Alli is making more and more sounds and finally connecting some consonants and vowels.  She's also mimicking some.  She can sign eat, more, all done, and wave bye-bye!    
Have I mentioned we love her lots??
Because we do.....we really, really do! 


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