It’s been a while since I’ve written here. It’s not because things have been all peachy or because all of Avleigh’s medical complications have minimized. It has been because I have been choosing to take some time for us and to focus publicly on her happiness. The last few months she has been an extremely happy child. She has grown and matured in ways I thought I would never see. The look she gives when I play with her or the excitement when we take her places. It has been the goal that we have been trying to reach her entire life. She’s finally there consistently! Her “5 year old” moments seem to be of what you would expect from a typical 5 year old… a little crankiness here and there but nothing we can’t handle by distractions.
So these past few months I have been baring the weight of all the medical. Not just from her public page but also from various friends and family. It’s a lot to take in but I was beginning to feel more “normal” only talking about the “good” in her life rather than explaining the medical pieces. I’ve recently come to realize that this is my place to let it out. It’s my place to get the information into the world not only for myself, but for her and anyone else that goes through these same challenges. I think it’s important for everyone to know the good and the bad. So here it goes…
Although Avleigh has been doing very well, her disease is continuing to progress. We saw a big scare a few months ago with increased seizure activity and had to introduce a second daily seizure medicine. After two stays in the hospital we now have those back under control, for now. Her GI state is pretty much the same. She continues to have difficulties in the early morning. It’s becoming more frequent that we have to use the suction machine. What happens is due to her stomach not working anything that backs up into the stomach comes up rather than down. During the night she gets fed, the intestines are wishy washy and doesn’t always process her formula in the right direction causing some milk, but mostly bile, to enter the stomach. When that happens she begins retching and vomiting putting her at a high risk for aspiration. But on the bright side her GI is still functioning and we are beasts at getting to her quick enough to keep her safe.
Then there’s the big focus right now… her muscles. She’s growing and just like we’ve seen her whole life her muscles just keep getting tighter and tighter! Next week she will be doing a baclofen pump trial where they will inject a liquid form of baclofen (muscle relaxer) into the lower part of her spine then measure her spasticity to see how she reacts to the medicine going direct to the muscles. Currently she’s getting it in compound form through her J-tube. This will hopefully help us to get her legs close to a full extension. It also has potential to help her GI, her swallowing abilities, head and trunk control. But it could also hurt it… it really all depends on her. If she qualifies then they would put the pump right under her skin. It would have a catheter going from the pump to her spine where they will set-up a continuous dose of the medicine. Once that is complete then we again have to see all her doctors so they each can measure and see how the pump effects her. She has a lot of the pressure on her knees that we’re hoping the pump will also help with. If not, then they will be looking at a muscle lengthening surgery just like they didn’t two years ago on her hips. Please help me to pray this part is just talk! The hip surgery recovery, although worth it, was very rough for us all. In addition, here’s some normal for you, one of her ear tubes have fallen. So we’re seeing ENT to get those babies put back in. One month of them being out and she’s already having issues with her ears.
As you can see, even with all these issues she still continues to smile! I will battle and bare the weight of all the medical for as long as she needs. I just want to see my baby, big girl, happy!
Avleigh's Journey 