I can hear the charming and beautiful Susan downstairs singing "Celebration" by the Commodores alternating choruses with her impression of William Wallace in Braveheart shouting "Freedom!"
I wanted to share some highlights with you all from the report Deb the Magician has prepared for Ali's most recent evaluation.Ali is now seen in the office two times a week. She tolerates her car rides now. Ali has made great gains over the last three months. Initially she was very irritable; however, this has decreased significantly to a normal level with her now being able to participate in therapy for up to an hour at a time. She may fuss or screech at times to indicate pleasure, displeasure, or indicate she wants a change of activity, but she rarely cries now during therapy sessions. Her irritability decreased dramatically once she started to eat orally and her g-tube feedings stopped completely.
She regulates her breathing with her swallowing. Ali has completely transitioned of her g-tube to oral eating with all medicine and nutrition taken orally. She just started to eat 1/4 cup of ground/pureed table foods 3 times a day with additional calories added to boost her caloric intake.
She has had one illness since eating exclusively by mouth, which required her to coordinate mouth breathing and sucking. She continued to drink her bottle during this time coordinating sucking-swallowing and mouth breathing. She is a dependent eater, as she does not effectively move her hands and arms to feed herself. She will try to help hold the bottle with one hand when she is relaxed. She can mouth pureed foods off her right hand.
She can now randomly move her tongue in various directions including in, out, elevate, rotate, and side to side. She an flatten, bunch and point her tongue randomly as well. Muscle overflow of sticking her tongue out in hard extension or tongue thrust is rarely seen now. She uses her tongue to lick objects that approach her mouth, which may be residual suckle reflex, it is hard to tell this point, as she appears to be enjoying mouthing the items. She is also able to make many vowel and early consonant sounds with this new tongue movement and control. She appears to enjoy making these sounds and enjoys people's responses when she makes sounds.
She is developing head control in sitting, but sits with a rounded lower back which does not support her upper trunk, shoulder, neck, jaw and tongue control for refined eating skills. This will need to be addressed in therapy. She does sit supported in a high chair now, but with rounded back, not on her sitz bone with a low back arch which is needed for optimal oral motor control for eating and speech. She has a difficult time coordinating hand-eye-mouth movement due to motor involvement.
Ali was developing normally prior to her injuries. Her cognitive and communication skills have improved considerably over the last three months. It is highly likely that she is able to understand more than she can indicate at this time due to her poor motor control. She has scattered receptive speech and language skills through the 9-month skill level. Currently, she is able to turn take with vocalizations, she calms and anticipates events, she stops crying when someone talks to her, she searches for known voices, she searches for "mama" and "papa" when her name is mentioned, she stops or quiets in response to "no", she smiles at a familiar person, and she attends to music and singing. Her expressive speech language skills are severely delayed due to motoric impairment and are at the 5-6 month level.
The charming and beautiful Susan has a charming and beautiful mother that has been a huge support to us during everything that's happened with Ali. She started sending us the components to this presumably lead free Animal Train by Fisher Price toys. 
Ali does this new thing where she sucks on her right hand and twirls her hair with her left hand. Deb the Magician has been working diligently to get Ali's shoulder and neck muscles loose so Ali can start to experience all that's she's determined to do.
Before Ali got hurt, she used to twirl her hair into such a tangle that she'd screech and cry and make us come running into her room in a panic. What a character. That's why I call her "Funky Winkerbean." I thought I made that up, but apparently, it's a comic strip.
Ali also does some exploring with her mouth and tongue. She checking out one her favorite toys with her mouth. She's having a blast in this picture. Shrieking loudly and kicking her little feet so that she turns in half-circles.
One of our adoption protocols was an HIV test. But that's confidential, of course. We took Ali in last week to a local clinic to have this done, but the poor ladies working that lab were so intimidated by Ali and her condition that I didn't think they could pull it off. They broke into a cold sweat when they went looking for a vein to poke their needle in. I called it off telling them I'd figure something else out. They were relieved.
You'll notice Ali is covered with a blanket here. The mornings are getting chili. I know that if you're on the East Coast, you have no idea that it's autumn. But fall has fallen here in Northern California. As I type this, were having our first big rain storm of our rainy season. The charming and beautiful Susan keeps talking about picking up some flannel sheets. I hope that happens soon...
This is one incredible baby.
This is a picture of Ali sitting in her Bumbo Seat. Some very good friends sent this to us a few months ago, but it's taken Ali a while to develop enough head and trunk strength to sit in it. I put her in it when her and I are up early in the morning together. You'll notice that I've tucked her left arm between her body and seat. She is still learning to put body weight on her arms for balance.
