Hello Friends and Family,
Marleigh recently had an appointment with her Neurologist, Dr. Harley Kornblum and her final evaluation from her infant development specialist. Good news all the way around!
Dr. Kornblum says we can reduce her dose of anti-seizure medicine to 50mg per/day which is half of the previous dose. We need to keep an eye on her but if she continues to do well he may take her off completely when she turns 2. He is happy with her development and said that she is doing better than 90% of the children who are diagnosed with Infantile Spasms. Her language skills are still behind so we are going to keep an eye on that. She will always be at an increased risk for seizures because of patterns on her EEG and the lesion on her brain but we just need to stay positive and hope that she continues to do well.
Dr. Kornblum will continue to be our doctor, we will just fly out a couple times a year to meet with him. Any tests can be done in Chicago and hopefully we find a nice pediatrician there. We love UCLA they have been soo good to us and we feel really fortunate that we had such a skilled team of doctors who had a lot of experience with this disorder.
Kelly, the Infant Development Specialist, has been terrific. Today she tested at approximately 3 months delayed. This is good news because when they did her 6 month review (that is 6 months from her first meeting with Kelly) she was testing at 9 months when she was actually 1 year. So she is continuing to develop at a steady rate. The severity percentage of the delay changes as children age. So 3 months behind when you are 9 months old is a 33% delay, but 3 months behind at 15 months is a 21% delay. So if she continues to develop at this rate then 3 months behind at 3 years is only a 12% delay.
They said if we were just coming to them now, Marleigh wouldn't qualify for treatment because she is doing so well. We do need to watch her speech. While she is quite the chatter box she only has a few words: Dada (of course!), Thank You, Bye-bye, Hi, and Doggie. Some get more use than others but as long as she has ten words that she uses consistently by age 2 then he said not to worry. I'm concerned that she might not be hearing very well because it is possible that Dylan's problem with his inner ear not draining properly could be hereditary. So we are watching carefully. Marleigh has an ear infection right now.
And finally, she started walking!!! Yay Marleigh!!
Thanks to everyone for your support and happy thoughts! If you want to see Halloween photos I am going to add them to the Neumeyer West blog.
Hugs,
Erin & Family
Check out Marleigh Walking!
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