Oliver's drop attack seizures have been largely controlled by an increase in Ativan. We are thankful for the reprieve, however this is not a long term solution. Sigh. I still haven't ordered the helmet. I could go all Freud on you and try to psycho-analyze myself why I haven't done it yet. I'll spare you that. Eventually, I am sure I will....I will probably have to....
In the past 2 weeks I have given Oliver Diastat twice. Diastat is a rescue medication that is given via a rectal syringe. Basically, it is a Mac truck-load of Valium. This is one of those doors we had prayed we wouldn't have to walk through. Sigh.
It seems like the rabbit's hole of Epilepsy gets deeper and deeper. It strikes fear in me to ask "where is the bottom?"
It seems like the rabbit's hole of Epilepsy gets deeper and deeper. It strikes fear in me to ask "where is the bottom?"
We meet with Dr. Mikati at Duke on July 19th. I am taking Oliver's preschool teacher assistant, Lauren with me since Andrew is working. Thank God for her; she has been so helpful to us and we love her!
We may be admitted for a 24 hour EEG, it is hard to tell. At that appointment we'll likely schedule to meet with the neurosurgeon to discuss the implantation of the VNS. We had thought of doing this last summer, but opted for the full on brain surgery in Boston. Now we are back to the VNS. In case you don't know, the Vagus Nerve Stimulator can be thought of as a sort of pacemaker for the brain. It will require another surgery, but it is much less involved than last year's two-part brain resection.
Sadly, it isn't feasible to get the VNS in Boston since we'd have to travel back VERY frequently to get the VNS machine "set" at the right frequency. I certainly would LOVE to have the Boston team doing this, but in reality we should be thankful we have the option of doing this at Duke.
We may be admitted for a 24 hour EEG, it is hard to tell. At that appointment we'll likely schedule to meet with the neurosurgeon to discuss the implantation of the VNS. We had thought of doing this last summer, but opted for the full on brain surgery in Boston. Now we are back to the VNS. In case you don't know, the Vagus Nerve Stimulator can be thought of as a sort of pacemaker for the brain. It will require another surgery, but it is much less involved than last year's two-part brain resection.
Sadly, it isn't feasible to get the VNS in Boston since we'd have to travel back VERY frequently to get the VNS machine "set" at the right frequency. I certainly would LOVE to have the Boston team doing this, but in reality we should be thankful we have the option of doing this at Duke.
Now for some good news...
Oliver is doing well at his summer school. He has made new friends and has learned how to stab food with his fork! He still loves to sing, dance and jump. Did I mention the jumping? Seriously, his calf muscles make Lance Armstrong's look puny. He is such a happy little guy and we continue to be thankful for the constant stream of joy he brings to us. He is so very lovable!
Clearly, I haven't been blogging as much since I'm working full-time in real estate. At the risk of sounding cheesy, I have to say I love it. Somehow sitting across the closing table from a happy client helps heal me a little. It reminds me I am more than a seizure counting, medication administering mama who is engaged in constant warfare with the Seizure Monster.
Clearly, I haven't been blogging as much since I'm working full-time in real estate. At the risk of sounding cheesy, I have to say I love it. Somehow sitting across the closing table from a happy client helps heal me a little. It reminds me I am more than a seizure counting, medication administering mama who is engaged in constant warfare with the Seizure Monster.
These are pictures of Oliver at work with his speech therapist, Amy Nolan. I think she is the best and I do not say that flippantly. She has unlocked words and abilities in Oliver we did not know existed. He does things for Amy that are astounding! As another mom said, "That woman has a gift!" Indeed she does. Thank you Lord for Amy...what a blessing!
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