Week one of three crazy weeks went quickly, especially since Avery added some additional complications to the already hectic schedule. I’ve had many sick children in the past eight years, but never have I seen one who couldn’t urinate AND tested negative for a UTI. She bounced back quickly from whatever it was, but I had to take another day off to stay with her on Wednesday.
Allison’s appointments went well. We had three private practice therapies, including our first pool therapy since March (she cried the entire time, but I think she will tolerate it better if she is put in a floater instead of being held by a stranger), one Early On session at home, and the dreaded Botox injections on Friday. This was an interesting experience – I’m sure Allison would label it differently. The doctor came in and marked Allison’s hamstrings and quads (and the lower groin, I think) with a green Crayola marker. He also marked her biceps and triceps in three different areas. Then he turned on his instrument and started inserting the needle. He explained, or tried to explain over Allison’s screams, that the instrument made a certain pitchy noise when he was in the muscle. When he was in the muscle he inserted the muscle relaxer. The doctor loaded her up with 45 mL’s in each leg injection and 25 mL’s for each arm injection – a total of twelve pokes, twelve injections. It was about five minutes of the worse screaming I’ve ever heard. The doctor even commented on Allison’s healthy lungs. We will go back for a follow up in two weeks. By then the slow release of muscle relaxer should be working, and we should see improvements in her trunk strength. The doctor also re-referred us for a custom seating system. The evaluation and fitting for this seating system is scheduled for the day after Thanksgiving. The last thing I want to do on Black Friday is drive to Grand Rapids, but at least I don’t have to take a day off for this.
On a side note, Allison is cycling. She vomited several times yesterday – straight green bile like we haven’t seen in a while. She woke up gagging at 5am. Her hair, clothes, and blankets were soaked with bilious vomit. I brought her downstairs and loaded her up with all of her medication, including Ativan, Allison’s sedation medication. I have a feeling today is not going to be much fun. We have a busy day ahead of us, and little miss pukey is going to complicate it. But I’m thankful it is on the weekend, and we can get her through it without having to take days off.
Next week is going to be exhausting. Three therapy sessions, one trip to Ann Arbor to meet with a surgeon regarding Allison’s Nissen fundoplication, six hours of parent teacher conferences, Mason and Morgan’s parent teacher conferences, and two of my own dentist appointments. Oh yeah, Halloween is in there too. I guess we will do our best. If next week is anything like this week, it will fly by. I’m counting down the days until we gain an hour due to daylight savings time. -T minus 9 days.
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