Thursday, January 22 2009

It's been a pretty busy week for us. I don't think I mentioned that Hannah went to an ophthalmologist last week. AFter a very thorough exam, he did not find any issues of alarm that would necessitate a rush MRI. Whew, one hurdle down. He did notice that when Hannah looks up, one of her eyes tracks outward, instead of looking directly up. Most likely, her muscles are fighting to direct her eye back to it's normal position. His best explanation was that she may have something called aberrant regeneration. To simplify a bit, Hannah's brain had to regenerate many of it's existing neurological pathways after the surgery and radiation. It is still in the process of that regeneration, however, some of those pathways may not be properly reforming. If this is the case though, there is nothing that can be done. Even after the regeneration is complete, the pathways will remain as they are formed. The eye issue isn't that big of a deal, as long as we know that is what it is, and it isn't tumor related. She has an appointment tomorrow with a neuro ophthalmologist to confirm there are no issues.

But, last night she had another episode that could be neurological related. After she went to bed, she called out screaming and crying that her legs hurt. She said she felt like she had to stretch them. She was straining and straightening her legs and squeezing her hands into fists. I walked her, and talked to her, made her walk and stretched her legs out, tried breathing and visualization with me. I finally gave her Tylenol and rocked her in the rocking chair. She finally calmed down after about 30 minutes. this was so reminiscent of how she was shortly after surgery. I don't think we had the blog then, but shortly after surgery, Hannah had a problem with her legs. We had to constantly move her legs or massage them. We spent hours and hours either bending her legs in and out, or riding her down the hallway on the bike we strapped her feet and body to, just so that she could keep her legs moving. We tried ice, heat, many different kinds of drugs, none that worked. She still had the problem when we went to Boston to start radiation. They finally put her on a drug that was an anti-anxiety medicine, and that slowly subsided the problem over time. I'm hoping this issue is not neurological related, and that it may be just growing pains. She had it again tonight, but not as bad.

The stomach problems continue for Hannah too. Yesterday, she came home from school at noon with a stomach ache. She looked awful. She didn't go to sleep as usual, just relaxed and even did some homework later in the day. Then, with the leg issues, she didn't get to bed until after 10pm. This morning, as I was trying to get her dressed, she started crying that her stomach really hurt and she felt like she was going to throw up. She slept in until 10am, and didn't eat much all day until this evening. I feel like she is missing more school now then while she was on treatment. I have spoken with several doctors today, and we have a new plan for now, which we'll start tomorrow. And, her next MRI is set for February 10th. Dave and I said today that we feel the frustration like we felt before she was diagnosed. We knew something was wrong, but no one could pinpoint it. We working on it....


1 comment:

Anonymous said...

Woo hoo.. I tried to post a comment yesterday, but I couldn't figure it out.
Anyway.. just wanted you to know that I am thinking of you guys and I have seen a lot of what Kasey used to do in what Hannah is doing now. Kasey has often complained of leg pains.. but I will say that when I was a little girl, I was plagued with leg pains. I would cry and my mom would try rubbing them. I would say a lot of it could be related to growing pains. Now when I get them.. they are more like charlie horses and ohh do they hurt. I have found that for me.. nice warm baths really help the leg cramps. She has to find a way to become totally relaxed. For Kasey, he loves heat too. Plus.. he has body aches and pains everywhere now.. he really likes warm showers and blankets.
The school thing.. well, as you probably figured it out, Kasey is far from attending school. He would always have a stomach ache or this, that or the other. I have thrown my hands up for now as far as school goes. But.. now.. I am stuck. I don't have any idea how to introduce some schooling back into our days. He would rather not.. and I would rather not! I know, shame on me. Our circumstances are a tad different though. Kasey is far from healthy and declining everyday. Hannah is a strong little trooper with so much ahead of her. I wish you luck and nothing but great health for both your girls. Hannah already knows more than her peers. She could write a book.
Have a good weekend!
Amy.. Kasey's mom