Wednesday, August 17, 2011


Last week we had Isabel's first neuro appointment since her last set of seizures. He did not have any office availability so he met with us in his "on-call" room at the Children's Hospital. He obviously was not very happy with how Isabel's body handled the seizures so he decided to add another seizure medicine. She is now on Keppra (what she was one before) and Tegretol. She is going to be taking the medicine three times a day in smaller doses, instead of twice a day in larger doses like we have been doing. This sounded great at the time until I realised that I had to get up in the middle of the night to give her 2 syringes full of nasty tasting medicine!! So far she has been a real trooper though *knock on wood*!
We also spoke about her being so far behind with her language skills. She had quite a few words before this last set of seizures and now we can barely count 10. This past weekend she has just started to use some of the words that she learned prior to the last seizure. He recommended the name of a great speech therapist that he tends to send his "difficult" cases to (GREAT). He also recommended that we get a bag valve mask at home in case she stops breathing and we can not resusitate her with rescue breathes. I hope this doesnt happen, but it's always better to be safe than sorry. We set up a follow up appointment for September and were on our way. So overall, it was a very good appointment. 
After I dropped Izzy off at school I put a call into the speech therapist. Thankfully she (herself!!) called me back the next day and spoke for almost an hour. We set up an appointment for this past Tuesday and it was definetely not what I was expecting! She was fantastic with Isabel and held her attention for almost an hour. She believes that Isabel's brain is swelling after each set of seizures and is pressing on the broca area, which is responsible for speech. When the swelling starts to subside, Isabel will start to regain some of the words that she lost after the seizures. This makes perfect sense! She also agrees that Isabel is not moving her tongue when she speaks, which again is neurological and points back to the broca area of the brain. make a long story short, Isabel will need intensive therapy twice a week until further notice. Trust me, I am NOT looking foward to this at all, but I will do anything for my little girl. We are going to try to get Caden involved in this therapy and bring him to at least one therapy session a week to make him feel included.
The news could have been much worse but honestly I am ready for the news to be 100% better. She is constantly on my mind and when I am not with her I am just waiting for my phone to ring saying that she has had another seizure. I know I talk a lot about her but she truely amazes me, she is my little hero.

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