I found out yesterday the Gage and I will be checking into the hospital on May 5th to begin the Ketogenic Diet and to do the long term EEG monitoring.
I am actually really excited about this...I'm hesitant to say that I have a good feeling about it because we've been let down so much in the past...but I do. For reason's unknown to me I really think that this may just work for him.
Maybe I'm holding onto that because I want it so badly. I want him to NOT be in the bracket of kids who will never have control of their seizures. This is the last step before deciding on brain surgery...and I do not want that....so I'm going to hold onto to the hope that this works. I am going to beg and pray that this will be the trick.
Medicine has not worked, the VNS didn't work...this has to...right??
Anyhow..I got the call from the hospital about 5 minutes after I got the call that the inspection on the new house went well and that we are officially closing on April 21st.
So it was good news all around yesterday.
A new house, a new treatment for Gage...I think that things may FINALLY be looking up for my family.
That's all for now guys.
Take care :)
April 9, 2008
We have a date...
Posted by Shannon at 10:43 AM
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3 comments:
Wow, you are going to be crazy busy! I hope this helps Gage (keto). I forgot to reply when you asked about what kind of brain surgery for Nolan. I really don't know. It has never been an option before as they can not find where in the brain the seizures start. That is why they thought the extended EEG would help. He is able to pull at the leads which is a nightmare. When he is in the hospital or has a pic line he wears "no no's". They are wide stiff velcro arm bands that make it so he can not bend his arms. He is wearing them in the "pic line picture". Of course every now and again he manages to slip one off. It may be August before we get into Boston. What kinds and how frequent are his seizures? Nolan missed 4 days of school last week and one this week because of them. If I had only known how good we had it when they were %50 contolled. I am so anxious for you. I hope you won't be alone all of that time. My heart goes out to you.
Christy
Wow you guys have a lot going on! I'm so happy that it's good stuff :-) I'll be praying that your closing goes smoothly and that Gage's treatment is a success!!! Thanks so much for the updates.
Love,
Makara
I know how you feel about the diet. My daughter is going to begin the Ketogenic Diet in May and we are cautiously optimistic as well. Seizures are so hard on children (and parents) and really take over your entire life! I hope this works for Gage. Take care,
Tera
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