MRI update: I will start off by telling you how Breanna has been doing and what Justin and I have noticed. Breanna has been going to bed early over the last few weeks not being able to stay up late. This could be for any number of reason but I had planned on discussing a sleep study when I went to the doctors today. She has been more emotional again could be for any number of reason. I have added counseling to help her cope better with the things that are upsetting her. We have noticed her struggling with retention issues. Her teacher has reported noticing Breanna struggle with school work. Her last report card has reflected these concerns with a 16 point drop in her grade point average. Again this too could be for any number of reasons and on the list of things to discuss. So back to the doctors…. The doctor walks in and behind him is three other people!!!!! (CRAP) he continues to tell me the tumor is stable (the hard part of Breanna’s tumor) the cystic components have changed, ok that happens. Than he tells me that Breanna IS having all the issues I have listed above,,, (how does he know this I didn’t talk to anyone about this YET) ……… As mentioned before … Breanna has had three major brain surgeries and 30 rounds of proton radiation. Any of these can cause continued damage at some point….. Breanna has started showing the signs of the damage and her scans are showing them too. Her frontal lope is now showing excessive damage. Mind you the last scan, three months ago, didn’t show any damage. I feel deflated … I knew all of this already. I knew she was different than she was three months ago. I knew she was struggling but I hoped for answers. I hoped it wasn’t oh… “Your daughter has brain damage and it’s kind of permanent.” Where does this leave us? Knowing the answers before hand dont always prepare you for the answers We get our sleep study, we go for more tests to see the extent of the damage so I can see how to modify her IEP. We continue to do what she can while she can. She is trying out for the school play this year. She is hoping to get the lead, little mermaid. She is doing the Braille challenge this year. Has enjoyed sleep overs and play dates with her friends. The reality is we don’t know how long she will be able to do these things mentally or physically. We will continue giving her pills. We will continue to struggle with the food issues. We keep on keeping on… As always Justin and I try to make things as normal as possible for Kaylee and Kyra. We will put on our smiles and make our memories while we can. We just REALLY HATE this for our children. (All of them) Life shouldn’t be so hard. Sorry I couldn’t keep the great updates coming. Hug your babies. Believe in Breanna!! Her Mama does.
Posted on: Tue, 20 Jan 2015 22:26:04 +0000
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