Friday, September 21, 2012

Concerns for Faith

This week has definitely been interesting for our family. I started my new work schedule on Monday and it was so wonderful crawling into bed with Faith in the morning and gently waking her up. When she realized I was in bed with her, she said, "Mommy are you getting me ready for school today?" I pretended not to know how to get her ready for school so she proceeded telling me what to do and in what order. When I gave her a kiss goodbye she had the sweetest smile on her face.
Me and my sweet little girl
Rob was able to drive me to work since he needed the van that day. It all worked out perfectly and I was so happy to have spent the first part of the morning with Faith. Now fast forward to Thursday. Faith woke up saying she didn't want me to get her ready for school and when I tried to start the routine she became quite upset and demanded me to call the school to cancel. Where oh where was my sweet little girl?

Her fit escalated to screaming and yelling for over an hour. It was impossible to bend her into her chair as all of the high tone in her body was operating at full force. I felt really bad when I left Rob to deal with her on his own but there wasn't much more I could do.

Friday morning went better and she only went to school for half the day. In the afternoon she had an appointment with her pediatrician and then after that she was fitted for new foot orthotics. At her doctor's appointment, Rob discussed our concerns about her fatigue from a full week of school, her extreme gassiness and some feeding issues. He gave us a prescription to deal with her overly gassy tummy and suggested giving Faith a few afternoons off from school during the week.

Because she is constantly fighting her tone all day long trying to do things like drive her chair, work on her computer and keeping her head up, she uses much more energy than her classmates. She burns her calories faster than they are given to her. No wonder she runs out of steam at the end of the week!
This photo was from a few years ago when Faith was fitted for her last pair of orthotics.
I am really concerned about her fatigue and I'm worried about her weight as well. The sensible solution would be to try and get more calories into her but this usually results in negative digestive consequences. Her body can so easily get thrown off and out of balance. Soon, we're going to be starting another kind of pediasure with added protein and I really hope that helps.

After her doctor's appointment, Rob took her to get new foot orthotics. She may not be getting bigger around the waistline but she is getting bigger feet! It is sort of a long process that involves cold, gooey paste-like stuff getting wrapped around her feet and just above her ankles. She was very patient and was glad to see everyone at pediatric rehab again. Since starting her therapies at school, she doesn't go over there as much anymore. Afterwards, she had to go home for a quick feeding, then they came to get me after work. We made it home just in time to watch Wheel of Fortune.

I'm thankful it is the weekend so Faith can get some rest. For me, I'm going to be spending a lot of time praying for wisdom on how we can best help our daughter at this stage in her life.

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