Faith's Super Rough Week

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I don't usually use the old cliche, Thank God Its Friday or TGIF but today I really am thanking the Lord it is Friday. This week has been a super rough week for Faith and her parents.

Monday - Faith had the day off from school for an unused snow day or something and thank goodness she did because she woke up at 6:30 a.m. throwing up. After getting her changed, me changed and her bed cleaned up, she did a repeat about 30 minutes later. She continued to do so until mid-afternoon until there was absolutely nothing left in her poor little tummy. Later that afternoon, she seemed to be feeling better so a gave her a mixture of Pediasure and water and she kept it down.

Tuesday - Faith and I woke up to find her dad at home on the couch. Now he was throwing up and had called in sick. I kept Faith home from school to make sure her feedings were okay. Although tired, she did make it to occupational and speech therapy in the afternoon but ended up having a diarrhea-like diaper that her poor OT had to change because I stepped out to run an errand. (Thanks, Nicole!)

Wednesday - I had to wake a sound-sleeping girl to go to school. She was not a happy camper. I knew she was going to start having one of those crying fits that lasted all the way to school, so I tried to ease her into getting dressed. I sat with her and gave her lots of kisses and hugs. But we were quickly running out of time, and I had to get her dressed and ready. 

Sure enough, her crying fit started and lasted all the way through me combing her hair, brushing her teeth, putting her orthotics on and getting her feeding ready. If not for a sweet little boy in the hallway, she would have continued crying. But her curiosity had been piqued by the little boy and his mom and baby sister, so we made it down the elevator in peace.

Thursday - Faith decided it was time to get up at 4:30 a.m. and stayed wide awake until 7:00 a.m. at which time she finally went back to sleep. I decided to let her sleep and didn't send her to school. That afternoon, I felt a migraine trying to sneak its way inside my head. I popped two Advil and drank some strong coffee. 

After my vision cleared, I was able to get Faith to therapy where she went swimming and had physical therapy. She had sort of a tough time in PT because she was tired and Jackie had her practicing going through doorways in her power chair, which is not her favorite PT activity. By some miracle, my migraine never came completely into fruition that afternoon.

That night, I arrived home from my small group Bible Study to find Faith and Michelle in the bathroom, where Faith had thrown up. This time though, I think it was due to the fact that she was trying to have a bowel movement during one of her feedings, which sometimes happens.

Friday - 2:00 a.m. Faith is awake. I am confident I can get her back to sleep but to no avail. I begin to feel sharp migraine-like pains in my head. To my dismay, Faith began talking and wanted to get up, which woke her dad up. While we struggled to get back to sleep, Rob stayed up to watch TV. Finally, at 5:00 a.m. Faith fell asleep and didn't wake up until 10:30 a.m. Another day of missed school.

Faith still smiling in the midst of a super rough week. 

There are many theories by me, my friends, Faith's therapists and her pediatrician as to why Faith isn't sleeping well. One of which is that the tightness in her muscles is making it uncomfortable for her, which means her Botox is wearing off (she gets injections in her legs every six months to help those muscles to relax). More frequent Botox may be the answer. 

She may also need another phenol block, which is a procedure that blocks off some nerves the legs. The nerves regenerate, which is why another procedure may be needed. Other suggestions offered have been massage therapy, a visit to the sauna, chiropractic care, and/or stretch her legs more than twice a day.

Another theory is that her sinuses are bothering her. Last week she went to get another x-ray of her face and it showed there was still some congestion on one side of her nose. We continue to give her allergy medicine.

At this point, I'm not sure what the answer may be. What I do know is that this has been very challenging for our whole family, and I continue to pray and seek God for his strength, grace and guidance on how to care for Faith and to help her sleep better.

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