Years of therapy

Today was the feeding study. It was a lonnnnng drive to Seattle, partly because of traffic and partly because Someone Who Shall Remain Nameless dropped her pacifier right as we got on the freeway both times and commenced screaming for at least half of the trip both ways. I wish I had that mechanical partition that could serve as a buffer between the back of the car and the front of the car - you know, the kind that limos have.

Got to Children's Hospital. It helped having been there before. Proceed through the 3, yes 3, sets of check-ins. 1) Getting in the building to get badges 2) Then to the floor check-in 3) And finally Occupational Therapy check-in.

There were 3 boys, all with casts on their right arms, in the waiting room. All the parents were there and seemed to know each other. I wasn't quite sure what their disorders were. It was odd that they all had a cast on their right arm. I do think there were other things going on other than the casts. Maybe it was a support group meeting for kids with the same disorder? They knew each other too well.

Rohan - 4 years old (see, I learn a lot in waiting rooms): cast on right arm, left arm didn't really move either, braces on both legs, one eye really wandered. He didn't walk very well.

Robbie - 5 years old: the aforementioned cast, glasses, didn't walk that well but did okay.

Alden - 7 or 8 years old: cast on arm, he was wearing a helmet, braces on legs, hyperactive, didn't walk well, didn't speak well.

I am very curious about what was going on there. It was obviously more than these three boys broke their arms.

Had a great visit with the occupational therapist. It was 2 hours and full of good information. Her impressions:

* Julia doesn't suck well.
* Julia doesn't use her tongue well.
* Julia is an inefficient chewer.
* Julia seems to get really nasally toward the end of a bottle feeding. She thinks that something is going on with her swallow and soft palatte. Julia usually abruptly ends a feeding. Perhaps she's aspirating some formula into her nose.
* She does better on solids than liquids (duh).
* She's learned very maladaptive coping mechanisms over the past year, her hunger cues are pretty much gone.

What does all this mean? Julia needs a swallow study and likely lots of oral therapy to relearn sucking & chewing and work on her maladaptive behaviors. It's comforting to know that we haven't been imagining things. Everyone has said that she's physically okay, and we just have to go with it. This is the first time a professional has really seen first-hand the constant struggles we are going through. It's not comforting knowing that this will take a long time, and it's going to be a lot of work on all of our parts.

The occupational therapist brought up that we live far away. She suggested that we have the swallow study done in Tacoma (at the hospital with the icky GI) because then the therapists there will learn Julia and her specific issues. So back to Mary Bridge we go!

Other suggestions she had:

* Try more solid meals. She has breakfast at 8-9am, lunch at 11:30, snack at 2:00 & dinner at 5:00. Do a pre-breakfast at 6:30-7:00am and a post-dinner at 7:00-8:00pm as well.
* Stick with juice if she'll drink it.
* Don't withhold her pacifier. She's struggling with a lot of things, and she needs her pacifier as a coping mechanism.
* May want to try #3 nipples. It's a good thing/bad thing: the positive with the 4is that she takes in liquids more efficiently. The positive with the 3 is that she doesn't struggle quite as much. She said that the 4's stretch her, and that can be a good thing.
* Don't ask her yes or no questions regarding food. Say, "Let's try _____. They're really yummy!"
* If she won't take mushy foods, put them on her lips. The goal is for her to tolerate them - not necessarily enjoy them right away.
* Give her foods high in water with each meal (fruit).
* She needs to be on the bottle for at least a few more months. She's not efficient enough with the cup and will not intake enough liquids without the bottle. Daycare will have to adapt. If they give us problems about it, we can get a doctor's note showing it's medically necessary.