Glasses

About a month ago Ayden Jane lost her glasses.  I was sure they were at the house, just had no clue where!  We found them a few days later in the backyard ... broken.  I mentioned getting them fixed and she protested that there were so many lines in them she can't see through them anyway.

It was time to head back to the eye doctor anyway so I just let her go without them.  Today we had the eye exam.  Her eyes are actually getting better!  Her prescription previously was for 2.5 in each eye and now it is for 2.0.  (eye don't speak eye but improvement is improvement).  Also, I mentioned that her right eye that used to turn in occasionally no longer seems to.  She has not had her glasses for about 3 weeks and she has done great.  Doc said yep, that all the way around her eyes were doing better.

It was pretty cool that now she responds so well that they could ask her to name letters instead of pictures and he lined up some different things for her to look through and he could not just test, but ask her which way it looks better to her.

She is doing really well with reading and her writing is... improving, but still needs a lot of help.  I am really hoping that the glasses help with that.

In a week or so we will have new purple and blue glasses! 

Glasses and Labs

I have been slack lately so I am going to try to post a lot more regularly.  First up, eyes.  Bad news is we lost Ayden Jane's glasses.  Well, actually, I lost AJ's glasses.  She is great about giving them to me or putting them in a safe place... when she takes them off.  I am pretty sure she handed them to me but I have NO CLUE where they are.

Good news is when we went to see the eye doctor today it looks like her eyes have not changed since last Sept. when we had them checked.  I don't know that it makes any sense that the events of last winter effected her eyes, but last summer when her tone was still low and the scoliosis popped up was when I started to notice the right eye occasionally wandering in.  It was time to have the eyes checked anyway so off we went.  It was the start of glasses so of course I will always wonder the connection.  In the end, I guess it doesn't matter.  What does matter is that she needs glasses for close up work like writing and reading so I have to get those new glasses!  Since the first pair came compliments of medicaid and we won't be eligible for another pair from them until next Sept. I have a bit of shopping around to do tomorrow, prescription in hand.

Next up, lab work tomorrow.  I was supposed to be headed for Dr. Miller's sibling study in April, but it is just not happening.  Probably more like July.  The last trip to our local endocrinologist  in February we decided to just wait 'til what we thought was the upcoming trip in April to do labs.  Since we are not going we need to check IGF-1.  We bumped gh twice since our last blood work.  I am really hoping we will be able to increase yet again as she is still under dosed if you go with weight based dosing.  I have seen such an improvement in tone and energy and body composition.  She has shoulders and tone!

I asked Dr. Miller if there was anything she wanted me to check while I was at it.  She wants a blood count.  I was a bit unsure what exactly she was looking for so I, of course, asked.  It is to check on her B-12 and iron supplementation and if there are signs of anemia.  Since we supplement quite heavily with B-12 my next question was what if she is still low?  Answer:  B-12 injections...  That would not thrill me, but it would not be the end of the world either.  Shots would be maybe every 2 weeks.  So why would a person still be anemic when taking loads of B-12 and iron?  In a word?  Absorption.  There seems to be an impaired absorption of a lot of nutrients in PWS and I would guess that B-12 might be at the top of that list.  I know many who see a big improvement from oral supplementation and there are others who see improvement only with injections.