July update

I have really had a crazy, busy month. I am so glad that I joined the Chromosome Registry at www.chromosome 18.org in and got Evan involved in DD Case Managment services through Southeast Human Services. I went to the Chromosome 18 conference in Texas at the beginning of July and met a ton of amazing people. It is so great to not feel so alone in all this! At the conference I found out so much information and have a longer list of all the doctors to see and/or therapies to try.

I finally have a handle on my home life, and can take a step back when I need to.
Evan is really doing well. I can understand him more, and he is more expressive. Of course, he still has his tantrums and he has his high energy and we definately have difficult days or difficult moments... but I am also much more patient and much more able to navigate through these now.

Jordan is really restless sometimes. He really needs an outlet for his excess energy and needs to have an outlet for his emotions and frustrations too. I've been trying to find him a sibling support group, but haven't had much luck with finding a local group.

Evan just had a neurology apt and now we have him scheduled for a sedated EEG and MRI yesterday. The neurologist said that shes not sure his seizures were fibrile, because they only say that if there is nothing else wrong with the child... i.e. no dev delays, no chromosome abnormailities, etc... This was a good apt. The neurologist this time was very helpful and perceptive, after the test, we will follow up with her in Sept. and see where it goes from there. I need to be careful when making these apts too close together, because each of these appointments can be mentally and emotionally exhausting and draining.

Evan will be starting Headstart in August, and will be doing PT, OT, and Speech at home in addition to at school. His latest fear is the wind, hopefully we can solve this and move on the the next fixation, lol.

Jordan is going into 3rd grade in August. He will be gettting some speech therapy in school also. Hopefully we'll figure out his attention and excess energy issues... I've thought he's had ADHD since he was 4, but haven't been able to prove that to his teachers... even when they see it, they dismiss it sometimes... I guess it really depends on the teacher. Sometimes he doesn't even remember, and I don't think he ALWAYS acts like that on purpose.

Having 2 strong willed, high enery kids is tough... but its my life, it's what God gave me, and I manage just fine..