Tuesday was Endocrine doctor day. Aly has grown almost an inch from the last visit, about 6 months ago. She is still behind her peers in growth and the doctor would like to see some "catch up" growth, so we are supposed to increase her growth hormone dose. If anyone remembers, when we did this originally, it threw off Aly's medication (desmopressin) that controls her urine output. It also made her fidgety. We increased it just slightly this week and are supposed to slowly increase in the upcoming weeks. It seems to already be affecting her medication dose. She was on a great schedule only needing to take her medication in the morning and evening. Now, it doesn't seem to last as long and she's taking it right around dinner time. We are having to adjust the dose, taking a third dose to get her closer to bed time so she doesn't wake during the night or very early a.m. So, what is going to happen when we increase the growth hormone more? Is it worse to not sleep and be tired or not grow and be short? UGH! I guess we'll figure that out as it gets more out of control.
Aly was also started on a very low dose of estrogen. They try to mimic what a preteen girl would go through if she had a normal functioning pituitary gland. They will slowly increase the doses as she gets older and get to the point where she is taking some form of birth control so she will get the hormones needed and have regular menstrual cycles. Oh, joy! When I went to pick up the prescription, I was told the pharmacist wanted to chat with me about the prescription. She questioned me as to why a young girl would need to take estrogen, saying that it was very unusual. I had to explain the situation to her and she's then like, "oh, that makes more sense then."
Thursday was physical therapy day and yoga day. In my last post, I was happy to have found Sister Kenny and how they had an office right in Albertville. Well, of course, as soon as I posted that, I got a call from them and some things had changed. First, they had to cancel the prior week's appointment because our insurance company was slow to respond for coverage. Then, the therapist we had met with the week before said she was going to turn Aly's case over to another therapist who she thought could better assist Aly. So, now we are required to drive to Buffalo every Thursday as this person does not come over to the Albertville office. It is, at least, still closer than going down to the cities I guess. So, we shuffled off to Buffalo for Aly's appointment on Thursday afternoon. It will be at 3:30 every Thursday, which I am also glad for as Aly will only miss about 10 minutes of the school day. Because we were seeing someone new, Aly had to do some additional testing before starting the actual therapy. I am hoping this week, she will FINALLY start the actual physical therapy. I am still happy with the clinic and am happy we found someone to help!
Thursday night we traveled down to Children's for the first yoga session. That is going to be quite a haul every Thursday night, for 8 weeks, but I think it will be worth it. She didn't really get to know any of the kids yet. I think they need a little ice breaker. There are 2 girls that seemed to be about Aly's age. One was not feeling good and didn't really participate. She kind of sat and watched. The other seemed quiet and shy. There are also 2 teenage boys, both older than Aly. So, a total of 5 kids. I'm not sure if that is the whole group or not. All the kids brought one parent along who can also join in on the yoga. It was a nice evening. The yoga instructor said she was going to start slow and increase the activity as we go along. This night she mainly focused on relaxation and breathing. It was so relaxing, one of the boys fell asleep! Aly said she really liked the yoga. They also gave us a DVD to do at home twice a week. We went out to do some errands, this weekend, and Aly and I found a couple of inexpensive yoga mats at Marshall's, so she's excited to keep doing it. I think it will be a good stress reliever for her. Since the yoga is part of a clinical study, they have questionnaires for the kids to fill out, mainly with questions relating to sleep habits and stress. We went down, a couple of weeks ago, to fill out the initial questionnaire and then they did it again on Thursday night. We will also have to fill it out again, midway through the classes and at the end. This questionnaire asks the kids to reflect on the past week and it goes through a list of choices, such as "are you nervous or not nervous" and "are you upset or not upset", both times we have done them, Aly has answered that she is upset and nervous. So I discussed these findings, with her, on the way home. She said, "well, it said to think about the past week and then answer. I have been nervous and upset at some point in the last week. Like, I was upset that I didn't do as well on a test that I thought I did good on." Well, I guess I'm glad that's what the answers were about. I guess as an adult, I would answer that question differently. Just because you had one or two upset moments throughout the week, would you answer that question as being upset or not upset when reflecting on the week? It just seemed odd, because there were also things like calm or not calm and happy or not happy and those were answered as calm and happy. Sometimes I think I should've gone to school for psychology because I'd really like to know more about how minds work.
Anyways, I am feeling more calm because some more things have been crossed of the list of things to do for Aly. Not quite as much time spent on the phone lately. That is a bonus!
Aly is looking forward to "Snow Week" at school. They have different days to dress up. One day is dressing up as something that ends in er. She decided on painter (after discussing many things that end in er), so we went to Goodwill and struck it lucky on finding a pair of painter paint type jeans that fit her. We are going to have some fun throwing some paint on them, as well as a t-shirt, and she's going to stick some paint brushes in the pockets. Should be cute!
Aly also had some fun in the snow outside today. It is mild, about 30 and the snow is melting and making for perfect snow fort weather again. She and Kevin did some more work on the fort started last week...this looks fun, but I am wanting spring so very badly!
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