Levi continues to do very well this week! Though he can now eat yummy food, we haven't had much chance to practice. He had such a tough winter that I don't think he went to school more than one full week at a time, and even that was not consistent. Then he had spring break. Now that he's going to school every day, he comes home so tired that he doesn't want to do anything, goes to bed early, and sleeps all night. I'm not complaining! He wakes up so happy in the morning and does so well at school, it's wonderful to watch him feeling good.
As we continue to wean off the ketogenic diet (high fat to low carb/protein diet that controls seizures), we are still seeing few seizures, which is amazing in itself. He is pretty much out of ketosis right now, and within the next few weeks should be completely diet free. This is a huge deal for all of us! For Levi, it means that his tummy will feel better and better as the fat decreases, and for me it means no more super strict time schedule. After three years, I'm more than ready to say goodbye to the diet, but if I had to do it all over again, I would. Nothing else controlled his seizures. When he started the ketogenic diet in May of 2011, he was having upwards of 200 plus seizures a day, while taking 5 seizure medications. Now, he is completely off seizure meds, almost off the ketogenic diet, and having only a handful of seizures each day. There are times he has clusters of seizures, but usually he is in some type of pain at the time, such as gas pain, which has been very painful for him. Charliefoundation.org has detailed information on the ketogenic diet for seizure control.
This brings us to a topic that we have been pushing off and cannot procrastinate any longer. We need a van with a wheelchair lift! My van, which my Mom gave me and I love, has been having issues lately. It's time to update, and we definitely need to get a van with a wheelchair lift. Levi is getting so big and tall (he's almost 4 1/2 now!) that it's too hard on us and on him to take him in and out of the car all the time, especially when we do things like yard sales, where we are in and out consistently. He ends up with sore muscles at the end of the day.
So, we are asking for help. We may as well get a newer van that will last a while, and we absolutely have to get a wheelchair lift. We will need to be spending at least $30,000, which is not something we can pull off on our own. We have created a Go Fund Me account with a goal of $10,000 so we can put that down on a good vehicle and be able to afford the monthly payments.
We don't like to ask for help like this, but it's such an important and desperately needed. If you could, please help us. Even one dollar adds up, and we are so grateful for everyone who has helped us so far.
Thank you for your continued prayers, Levi is doing so well!!!
Chillin' with smiles :)
Beautiful dreamer
I'm too tired to eat, Mom!
Enjoying time with his sister.
Getting stronger!
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