Wednesday, May 11, 2011

For some good news

A couple of weeks ago we had Brayden's picture taken, the token 4 year old picture.  Would you believe he smiled for it!?  I like this picture because it looks like he is laughing.

Over the past couple of weeks Brayden has also been to many doctor appointments.  Checked in with pretty much everyone with an office visit, labs and/or phone call.

Lots of prayers are being answered.  Thank the Lord.

The good news:
  • Brayden's new wheelchair has been ordered, a Zippie Iris.  We also order a stander for Brayden to have at home (he currently only uses one at school).
  • Ultrasound and Nephrologist - No sign of kidney stones, despite the calcium in his urine being incredibly high.  Continue with the Bicitra medication and lots of water in addition to his formula.  He will have lots of labs and urine test in a couple of months.
  • Surgeon - The new j-tube is working and no problems.  A little leakage and skin irritation but that is to be expected and go away soon.  The g-tube is good too. 
  • Neurologist - Seizures are looking good...I should say lack of seizures are looking good.  Since coming home from the hospital with two new medications, Brayden has a major seizure only 1 time every 3-4 days.  Continue with the current medications and the ketogenic diet.
  • GI & Keto clinic - And...Brayden has gained weight!  About .5 - 1 lb. of weight gain.  We have been crushing Creon (6 capsules) and putting it into his formula.  We have also replaced a bit of the Microlipid fat for another fat called MCT oil, hoping that Brayden would absorb it better, which seems to be working.  This is great because Brayden can continue on the ketogenic diet and we do not have to check in with the clinic for two whole weeks.
And I think we have all caught up on sleep, being back together and in our routine.


kristihall said...

Love the picture!! Yay for good news too! :)

kirstenpetree said...

great news! Love that pic he looks so happy!

Mo said...


Junior said...

Love the picture, such a handsome boy. Yeahhhhh for all the good news.

Wherever HE Leads We'll Go said...

Love, love, love that picture! Brayden looks so handsome (and he does look like he is throwing his head back and laughing). I am so excited to read all this good news - less seizure activity and weight gain! Woo hoo! That is wonderful!

Megan said...

Carrie, I absolutely love this post. I have actually left it in my blog reader as "unread" on purpose just so that I can go back and read it again. I LOVE to hear that Brayden is seeing some improvements. What a blessing that he gained weight! And the picture is just beautiful. Thanks so much for sharing the great news!