Anna started the new seizure medicine and we are moving the dose up ever so slowly. So far so good. She had a rash one day which scared me but some Benadryl fixed it and luckily it didn't turn out to be "the rash" that is so feared with Lamictal. She has had one seizure since being in the hospital. It's one more than I would like but I also know she is not anywhere near the full dose of medicine so I just have to sit and wait. I took Anna to the doctor on Monday for an earache. Her ear was not infected (yay!) but her tube is out and rubbing on her eardrum which is why it is hurting. There's not much we can do but wait for the tube to move. So yay, good appointment, right? Wrong. Dr. Goff pointed out that Anna had lost weight and her BMI is not even on the chart anymore. It would have been an easy fix a couple of years ago but now Anna is 6 and has opinions about tube feedings. Most of those opinions are not positive ones. We were able to compromise with something I found odd but if it works then ok. Anna is now doing continuous daytime feedings in exchange for not getting nighttime feedings. I have more hours in the day so I can get more calories in her. I'm also supposed to start back adding Duocal to the Peptamen to hopefully get her daily calories more near where they should be. She handled it fairly well this week and I'm so thankful for her teachers and aides who made it easy.
We met with the DME company to order a medical stroller. That was a tough pill for me to swallow. It was great when we could just use the regular stroller and pretend everything was "normal". Those days are gone. She doesn't fit those strollers anymore. Next will be handicapped tags for my car. I hate to do it but the long walks sometimes wear her out and she is burning precious calories that we can't afford for her to burn.
I'm nervous about what we are going to do for school next year. We are to the point that we need to decide on Inclusion or not. There are so many positives and negatives and I just don't know what is right for her. That will be a whole other post and I'm not ready to go there yet.
You would think after reading this that things are falling apart but honestly they aren't. We are doing well in so many ways. Anna continues to make progress daily. The other two kids remains just as amazing as Anna. They are each so different.
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