Tuesday, April 27, 2010

A little update

The bed - Brayden is officially sleeping full time in his new bed. He really likes it. The mattress feels memory-foam-like so it nestles him in nicely. He seems to enjoy not staring at the crib bumpers. I have found him gazing towards the light of the window.
Jeremy and I broke down the crib...I had a little break down...the crib no longer a part of our life.

The diet - Brayden has been tolerating the ketogenic diet fairly well. His small daily seizures seem to be decreasing. However the moment I start to think that, he has a bad seizure day. But overall they seem to be less. His GI system does not seem to be aggravated by this new diet; just a few small things and we checked with his GI doctor and there is no concern. The formula mixture that we make (Ross Carbohydrate free formula, Elecare, Microlipid and water) seems to clog his g-j tube a bit so we need to flush his tube with warm water more often.

The nurse - Brayden now has a full time at-home nurse. She is with us about 40 hours a week. Brayden has already taken to her because the first day he got some good cuddles. We may also have someone with us over the weekends.

We have lots of other exciting things going on but I will be back to talk more about it later!


The Henrys said...

I'm glad that things are going well for you all!

Debbie said...

Thanks for the email. I can't imagine the hoops you jumped for that bed. I am also impressed with the nursing you are getting...you have definitely done your homework, huh?
Hope the diet continues to give much seizure relief.

Wherever HE Leads We'll Go said...

I am so glad that Brayden is adjusting to his new bed and his new diet. That is great news!

I can understand the breakdown about the crib. Makes it feel so final - doesn't it?

The nursing care sounds great - it is so nice that Brayden has taken to the nurse. Seems like he can be bribed with cuddles. : )