Monday, May 4, 2015

Hungry Boy!

Over the last two weeks, Levi has progressed from a few bites of baby foods, to eating half a jar at a time, and now is eating an entire jar of food plus Gerber puffs.  Levi loves the different flavors and textures.  It's very easy to know what he likes and what he does NOT like!  He absolutely will not open his mouth for food that doesn't taste good.

I'm so proud of how far he's come!  He knows to eat when he's hungry and stop eating when he's full.  He yells at me if I don't feed him fast enough :)  The world is truly opening up for him!

Levi was only 18 months old when the feeding tube was placed, and before that he never had a big appetite.  He could take food or leave it.  This may also could have been caused by the fact that he had to take crushed pills on top of just about every spoonful he ate.  He was on the ketogenic diet which is highly carb restricted, so Levi could not take sugary liquid medicine. The best thing about the feeding tube is the ease with which we can give medicine now.

Levi is now off the ketogenic diet and off all seizure meds.  He was on the ketogenic diet for three years, almost to the day, and though it was difficult at times, I would do it all over again to gain the improved cognition and seizure control we have seen.  When he started the diet, he was having 200 plus seizures a day (focal/partial and infantile spasms) while taking a cocktail of five different seizure meds.  Now he has just a handful a day at a few seconds each.  What a difference!!

We are in the process of planning a benefit for Levi to help us fund a wheelchair lift van.  The van my mom gave us has broken down, and now that Levi is getting so big, he needs a van with a lift.  We had planned on installing a lift in our current van, but that's no longer an option.  We need something that will last for a while.

Levi currently has a Go Fund Me page and we will be having a benefit for him on July 11.  More info to come soon.

Thank you for your continued prayers and support for our little Levi!!