After almost 3 months of waiting, our trip to Baltimore and John’s Hopkins is right around the corner. We are crossing all of our t’s and dotting our i’s. All of Gabriel’s records from our hospital have been sent and received (I made sure they were received!). We are finishing up filing out a great questionnaire the clinic sent us and complying a list of questions. From what I understand we will be meeting with the doctor and talking through what has been done so far and seeing if he has other suggestions/ideas. We are seeing Dr. Eric Kosseff–one of the doctors, who literally helped write THE Book on Ketogenic Diet for treatment of epilepsy.
So far we have been very happy with the interactions with Dr. Kosseff, as well as, the clinic staff. He has answered several emails even before we had an official appointment. I truly don’t know what to expect. I don’t necessarily feel like we are going to get any clear answers but I am thankful to have an extra set of highly trained eyes on Gabriel’s case. Since his specialty is the diet, I am expecting suggestions on tweaking things in that area not necessarily drug changes or ideas. Could be interesting since getting Gabriel to eat anything but pizza and a few snacks has been pretty much impossible lately….well not impossible…but 2 hours to eat a plate of eggs that are the size of equivalent of 6 adults bites. UGH! 🙂
I wanted to share a website that has been invaluable to us….it is because of this family and their commitment to help other families, that we have the ketogetic diet.
http://www.charliefoundation.org/
If you get a minute click on the link and check out the dateline video (it is the 2nd video in the window). It is a great story about the diet how it helps and shows what seizures look like.
I am getting excited to have the trip over with more than anything. I am literally praying that God will help me slowly but surely get all the details of the trip sorted out. Thinking through getting all the food ready and prepped for flying, plus making sure the food and the all the medications make it through screenings are keeping me up at night! I just keep picturing Chuck and I looking like crazy people in a movie scene.. with one of us plowing through the airport with a stroller loaded up with a helmeted 3 year old and all of our random stuff, while the other one tries to carry the giant carseat. LOL! I am literally laughing thinking about. I wish we were getting to go on vacation instead! but truly grateful to have this opportunity.
SO praying people…here are our prayer requests:
1. For organized packing and a safe, easy and calm travels
2. For clear communication with the doctor. Pray that we will be heard and understand the answers as well as the why behind the answers.
3. For a complete and total end to Gabriel’s seizures.
When we traveled with a small child in a big car seat, we discovered that strapping the child into the carseat, and then placing the child in the carseat onto the stroller. It made it MUCH easier to cart everything around, while not worrying about losing the child because she was strapped in well. That left the other parent’s arms more free to carry other things like luggage.
Good luck with this trip! I pray it all goes smoothly for you, and that you get some good answers.
Love you Amy! Thank you for letting us know specifically what we can be praying for!!
Praying!