Sunday, May 23, 2010

Catching Up

Well, I have not kept ya'll up on Ayden Jane very well this past week. Let's see if I can recap. We have done quite a bit of swimming. AJ loves jumping in and is jumping farther and farther out into the pool when she leaps. She can hold her breath a long time under water. Okay, I probably should not know that, but she does it on purpose! She has started to try to swim to me from the steps as well as when I push her toward the steps to get out. I finally got her to put on swimmies (which we call muscles) and she can keep herself up with them perfectly. Of course, given the opportunity she pulls them off and jumps in without them.

She is also back to squeezing, clenching, sitting on top of me, wanting to cuddle really close in the am... Just needs that contact with deep input. Note to self to give her a good lotion rub down tomorrow. The swimming seems to really calm it all down... (thus all the swimming we have done this week)

On the other side of the coin, I am thinking about changing two things with her. One will require a phone call with the endo. I return to endo in late June, but I just really feel AJ needs a bump up in gh. She is on a low does, comparatively speaking, but has tested in a good range. So what makes me think it is time? Hard to explain. Her body composition is just slightly changing. She is beginning to look a tiny bit like the pictures I have seen of PWS kids without gh. Sort of like a torso bigger in proportion to the arms and legs than it should be. Or maybe like when you take an aerial view of her, that her limbs just sort of taper off... Last time I went to endo she was basically in a place where she would have considered a bump but did not really recommend it. She suggested that if I felt AJ needed it to call before the next appointment and then we could go up with it and get a check not too long after to make sure it was not too much.

The other thing is I have an appointment with our pediatrician to see about supplementing AJ with iron. Since iron is something that truly can be dosed too high, I want his input and guidance with dosing. So why iron. I am trying to solidify Ayden Jane's poop because it is time to potty train. A few other moms have tried everything else (as I have) and found this to be the charm. It is a somewhat rare problem in PWS as the more common problem is in the opposite direction. Anyway, it would be a welcomed change and would likely be good for AJ as it could be signal that she is actually low iron.

Finally, eyes. We are lucky to have an excellent eye clinic in Charleston (Storm Eye Clinic) in connection with MUSC. I am also going to get our pediatrician to set us up there with an appointment to start keeping good track of AJ's eyes. I haven't seen much to tell me there is a problem, but I want to catch anything as early as I can.

I was hoping to have some fun beach pictures for you tonight, but the storms came and chased us off the beach before I could get any. Next time.

2 comments:

  1. I know exactly what you mean about the changes in body composition when they start to outgrow their GH dose. Dean's body does the exact same thing! Makes me thankful for docs who want to keep on top of proper dosage so that it's really making a difference in these kids. Sometimes I worry that underdosing is for them like not even having GH at all!

    ReplyDelete
  2. Dr. Clarke is awesome. I am glad to hear what I see makes sense. It is really the first time I thought something seemed a bit off. AJ has been on the same dose for nearly a year and a half!

    ReplyDelete