Time continues to fly and I heard something about possible snow this weekend in the forecast! Yes, that nasty 4 letter word! At least it is nasty to me. I think there should be NO snow allowed before my birthday!
Anyways, one year ago, Aly was just completing radiation treatments in Florida. She was done on October 25th of last year and she was looking forward to being home, just in time for Halloween! So, we are just about to the one year mark of being cancer free! We are blessed that the cancer treatments are becoming more and more a distant memory. We can only continue to pray that the cancer is gone forever and we will never have to experience that again. We will continue to pray for a cancer cure and for better treatment options in the future.
Today, Aly and I ventured to Children's to have them do botox injections into her jaw muscles. She continues to have jaw locks and this may be something that will help. I was under the impression that it could get rid of them all together, for good. After seeing the doctor today, it sounds like it may only be a temporary fix, IF it works. He told us that they are typically done about every 3 months! I'm not sure I like that option. I guess we will have to wait and see if it does work and then figure out what to do. He told us that it typically takes 3-5 days to show proof. I was already optimistic as Aly said her jaw did not lock during lunch or dinner. Only later, did she tell me that she had a caramel which produced a lock. Now, she just returned home from swimming and said it locked during swim practice as well. So, I guess we need some patience. Please let this help her and relieve this annoying affect. We still don't know what is causing it and that is the most frustrating to me. No one will say, it is from the radiation or it is from her brain surgery. No one knows why it happens some times and not others. I still don't understand why everything to do with Aly seems to be such a mystery! I know that she NEVER experienced these before treatments and that they started during the last week of radiation treatment. Nobody wants to take claim. Kind of like certain politicians! (rim shot please...)
Even with it all, Aly continues on the path of being as normal as possible. She went to a friend's for a birthday party sleepover on Friday. She had a swim meet on Saturday and Sunday. The 6th graders are getting ready for a 3 day field trip to Long Lake Conservation Center on November 7th and, recently added, an overnight field trip for student council members on Nov. 1! The council will attend a leadership conference in Alexandria. She is excited and looking forward to both trips!
I will forever wish that there was more we can/could of do(ne) to help with her vision. Her vision loss has seemed to have taken the most away from her. I watch her become more isolated because she can't be as active as she once was. I know it affects her friendships as she is now unable to do many things her friends want to do. They don't come around as much anymore. Aly seems to have to initiate calling or going to doors to ask someone to play. It hurts me to have her tell me she's going out to play and ask what time she should be home...only to return 5 minutes later when no one is able to play. I watched, at the swim meet, as a girl waved at Aly and Aly didn't respond. I asked, "did you see______waving at you?" Her response was, "no." I hope that kids don't think she is standoffish or ignoring their hellos and waves. I almost feel like she needs to wear a t-shirt that says, "you may think I can see you, but I can't" or something like that. Aly functions incredibly well with the lack of vision she has. To look at her and watch her you'd never know. I just want to know, how to put the word out so others know she's not trying to ignore, she just doesn't see. You can be standing next to her waving your arms up and down and she can't see you. She frequently walks right past people because she has no peripheral vision. This summer, she was teased, by Tom, because she ran into the dining table one day. So, I taped up a pair of Aly's swim goggles, to mimic her vision as described to me by the doctor and by Aly. I made Tom wear them for a little while. It is not quite the same, as we can turn our eyes to compensate, but it is still pretty dramatic to put those goggles on. If anyone wants to borrow them, I'd be glad to share! It just pulls at my heart, all the time. I don't know what else I can do. Moms just want their kids to be happy and it is REALLY hard when they aren't!
That's all for now....
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