I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Wednesday, January 13, 2010

Adding More Therapy

Well, I FINALLY got a call from the feeding clinic after being on their supposed "waiting list" for over a year and a half and Alex is slotted to start Feeding Therapy every Thursday. While I know I should technically be excited about what this means for Alex's feeding progress, I have such a bad taste in my mouth for the clinic that I'm trying really hard to go in with a "clean slate" attitude. Alex's Speech Therapist that has been working with her feeding therapy with me is pregnant and leaving for maternity leave soon so I guess the timing really couldn't be better. I couldn't be more happy with Alex's progress on eating her blenderized diet - and while she eats three full meals a day by mouth, we really still have a long way to go as far as getting her to be able to chew, and to be able to suck and swallow from a straw to drink. All of her fluids right now are given in her feeding tube after she's had a meal. So what that means as far as my schedule goes right now is Monday's are Speech Therapy, Tuesday's are Physical Therapy, Wednesday's Zach and I attend Wednesday night classes at church, Thursday's will be Feeding Therapy, Friday will be the designated doctor appointment days, Saturday is our family day where we try and do something fun as a family and Sunday we go to church and then spend the afternoon with my parents. I'm kind of feeling a bit overwhelmed right now with everything on my plate! Alex's respite worker, Jennifer, has worked every day for the last week, including the weekend, and I can't tell you what a God send that's been because on top of working and running to all of the scheduled therapies, there's still the normal day to day stuff like grocery shopping, haircuts, school work for Zach, preparing all of Alex's meals, packing Zach's lunches, laundry, etc. etc. that still need to fit in somewhere. I also tend to pile a lot of guilt on myself and I'm honestly trying so hard to not let Zach feel like he's getting lost in the shuffle and having him have some kind of routine or normalcy that he can rely on.

Yesterday Alex's physical therapy session went just as well - again she walked for over 55 minutes and her maximum number of steps at any given time was 70! She had a 9 minute 'nap' at school so needless to say she was completely exhausted when we got home. She's got quite a few things in the works right now as well - we have to make her an appointment for orthotics because her back brace needs to be adjusted, we're trying to schedule a swallow study to see what the mechanics of her suck/swallow are and we're having more blood work drawn to check her L-Carnitine levels to see if she's deficient, which could explain her low tone. I'm also starting the research phase of putting her on a Gluten and Casein free diet, but that's all I have time for right now so I'll post more on the L-Carnitine and Gluten and Casein diet later...

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