Speech Therapy, Physical Therapy, AFOs, Enzymes, Updates!

The last time I made a real post about Maisie was over a month ago. October 1. So much happens in a month in this household, so this might be a long one.

First, Maisie has been cleared by her many doctors to start therapy again. She also had a follow-up with the endocrinologist, who cleared her to return to "normal" feeding with the addition a number of digestive enzymes, which she takes through the tube before every meal/snack. She is still tiny, weighing just about 25 pounds. Which is great and means she has gained weight, but I mean I've know five-month-old babies who weigh about that. A lot of people hear that and wonder why she isn't failure to thrive. She's only 29 inches front head to heel. She's just tiny in every sense of the word. She's not even on the charts, but her pediatrician isn't concerned because she gains about two ounces a week. So she's growing. Completely at her own pace, on her own chart. But she's growing.

Anyway, now that her health has stabilized finally, I'm really concerned about getting her on track developmentally. Two weeks ago we met with a child developmental specialist who put her at about 18 months old. She catalogued Maisie's entire vocabulary (thirteen words), assessed her motor skills, gave us some vague goals for each category, and recommended speech/language therapy and physical therapy as well as preschool three days a week. Maisie returned to the Open Arms school last Monday, enrolled in the three-year-olds' program. She's going on Mondays, Wednesdays, and Fridays for four hours a day. On Sundays and Thursdays she has speech and language therapy, and Tuesdays she is returning to physical therapy with the much-beloved Drill Sergeant June.

All of this happened so fast. The specialist did not want to waste a second in getting Maisie out of the sedentary sick-girl lifestyle that she's been forced into with all of her health issues. She's five, and she should be active and social and laughing. I know this is going to be good for her, but it's been so hard. Maisie has to take enzymes before every meal and has to have a 100mg bolus feed through the tube every two hours. She is taking Keppra, a diuretic, an antidepressant (for anxiety-induced seizures), a beta-blocker (for kidney function), 24-hour Zyrtec, and Levalbuteral via nebulizer every day. So all of that has to get done before we walk to the preschool at 9:00 in the morning three times a week. Therapy days are easier because nothing starts before 11:00. Still, fitting in all this medication and finding time to clean the house and blend food for her and yada yada yada...I'm tired. But it seems to be a good fit if a rigorous routine.

What else is there...she's back in AFOs for 6 hours a day and doing an hour of stander time every day. I'm suffering from some serious morning sickness which does not go well with administering morning meds...I guess that's all. Hoping that we get into a routine and have an entirely unremarkable winter.