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Thursday, April 16, 2015

Wheelchair Lift Van

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!




Friday, April 10, 2015

Levi Can Enjoy Food Again!

Yesterday we went to Cardinal Glennon for a swallow study.  During this test, Levi is fed food and drink laced with barium so we can see where the food goes when he swallows.  Levi's had the feeding tube since he stopped taking food by mouth at 20 months old.  He's had about 4 subsequent swallow studies that showed he was at risk for aspiration (food going into the lungs rather than down into the stomach).  Thankfully, this time, after hard work at home and school, Levi did wonderful and is now able to eat food by mouth again!  I have high hopes this will further improve his GI problems.  He cannot have liquids just yet, but hopefully once he's used to eating again he'll be able to better control liquids as well.

Hallelujah!  Things are looking much brighter to us these days :)

Snuggling with Dino and watching Barney.  Aren't my new glasses scholarly??


Yes, I know I'm cute :)


My old glasses that Mommy lost.  Sigh.  The blue ones were much more comfy.


The Long, Hard Winter

Starting in September, Levi and I took turns being sick, making for a long winter.  It started the beginning of September, two weeks before we moved into our lovely new ranch style house (in our same neighborhood!) that works so much better for us than the split level.  Levi spent weeks out of school due to horrible pain but we couldn't pin down the cause.  He had a CT of his head twice to check the shunt, and the neurosurgeons even pulled fluid from it once to be sure it wasn't infected.  As it turned out, the pain was caused by cutting his back molars.  He's always had issues cutting teeth, but thankfully he's over that, we have an amazing dentist, and I'm pretty sure all the teeth are through.

After that, we saw a slew of viruses that zapped our energy and often kept Levi out of school.  My van broke down and then we were really home bound!

Levi spent a week in the hospital due to GI issues again.  During that time, it was determined that since he's been on the ketogenic diet (a high fat to low protein diet that controls seizures) for nearly three years, it's finally time to wean down the ratio.  After a ton of GI testing, the doctors jumped on my bus and figured it was due to the high fat content.  Thankfully, that seems to have been the issue. As we wean the fat from his diet, Levi is feeling better, and miraculously, his seizures have decreased dramatically as well.  

Hope springs eternal, as they say, and with the warmer weather our spirits have been lifted.  Levi is happy, and goes to school consistently again.  We are looking forward to a fun and exciting summer!

Levi and Sharalynn


Christmas 2014