These photos were taken at the request of my beautiful Madison. We were looking though photos when we realized that we didn't take any birthday photos. Ugh -- I win the bad mommie award. So we went out and took some photos with her new guitar, which she is becoming best friends with. She even has a blister from strumming so much, which she would be more than happy to show you and tell you all about. I love my Madi beyond words could say. She is such an amazing, unique little girl who makes me smile everyday!
Anyway -- lots of appointments have come and gone and I though I'd take a moment to fill you all in. A few weeks ago Angela was sedated for a ABR, which is a type of hearing evaluation where the brain is tested to see how it is receiving different sounds. The great news is our Angela has perfect hearing, which we kinda already knew, but because her specific genetic disorder, 1P36 Deletion Syndrome, has a high incidence of hearing loss, we wanted to have her tested.
This past week we also were able to meet with her neurologist and go over her history and also talk a little about her future. Angela unfortunately have several strikes against her -- and if either one were her only issue it would make her life so much easier. But the two issues -- the genetic disorder and the brain injury which caused the PVL and the cortical blindness, put her in a difficult situation. Ugh. The spastic quadriplegia causes her to have some tightness in her arms and legs and the genetic disorder gives her very low central tone, though her head control has made incredible improvements. I talked with the Neurologist about what his thoughts were for her as far as her ability to one day walk. He said she certainly has a lot against her but didn't rule it out completely. Well this got me very excited! I know she may never walk without assistance but I've got big dreams for her to be able to find mobility -- no matter what that looks like.
Angela has so much potential. At first she can come off as not really there or just lacking in motivation and personality. But that's just because she is trying to figure you out. You just have to close your eyes and imagine what her world is like. People will often be very nice and talk to her, but unless they touched her she may have no clue you are talking to her. Once she takes in all the sounds of her world she is all personality. She is so age appropriate in so many ways -- it makes me smile, and flustered on a daily basis.
We also talked about her seizures. She has a seizure disorder that is a bit confusing. Her EEG is a total train wreak. We still believe she is showing sign of seizure activity and will be doing a 24 hour ambulatory EEG next week. Our neurologist said it was going to be challenging to figure out if what we are seeing is indeed seizure activity just because her baseline EEG is rather complex to begin with. Either way we will probably adjust her meds after the EEG to see if some of the behavior is eliminated or not.
I just can't wait to see what Angela looks like one year from today. She has made huge progress! She is now taking a pacifier and holding it in her mouth as long as she likes. Her innaproprite self soothing licking behavior is gone and she now has beautiful clear skin! We brush her teeth twice a day with an electric tooth brush to help stimulate her mouth and also help with her oral awareness and although she is not a fan she does not gag or vomit. She is sitting for very brief periods (seconds) in a tripod pose -- totally huge! Not to mention her visual awareness seem to be improving as well.
I could probably go on but I'll save it for another post!