Getting Back to Normal

We went back to see Dr. Keating, the neurosurgeon, yesterday for the first time since discharge. He was very pleased with Khyle's progress. The incision is healed nicely and he thought Khyle was alert and responsive. We talked a bit and he says we should come back in 3 months for another follow-up.

This morning Miss Bev & Miss Liz came to the house and we resumed Khyle's therapy sessions. Beverly Upshur is the Vision Specialist and she tells us how to best engage Khyle despite his vision impairment. She teaches us a lot about how to 'read' what he is 'saying'--to recognize his attempts at language. We feel Khyle communicates a lot with us through his gestures and behavior. It is important that we not let him resort to crying & throwing tantrums to get what he wants. Liz Snead is the Occupational Therapist and she works alot with Khyle's fine motor skills. We work with lots of toys, reaching & grabbing and having him engage with the world through toys. Khyle is much more partial to people, Mom & Dad especially, but we want him to know the world is more than just us. It is also important for him to learn cause & effect--that 'if he pushes this button the music will play'. Then he understands that he is making something happen. He has the power to accomplish things on his own. Khyle is now on a muscle relaxant called Baclofen and we see an improvement in his overall tone which helps with movement and play.

Today's session was good, just starting up again since the surgery and we are setting new goals for the year--the calendar year follows the school year, August to Summer. So now is a good time for reevaluating.

We are very much trying to get back to our regular routine. I would say 'normal' but our life is far from normal! There are many changes coming and that is another post entirely. But we are well and Khyle is doing AMAZING!

Good Doctor's Visit

We had our first doctor's visit back at Children's since our discharge yesterday. We went back to see the GI nurse to evaluate Khyle's nutrition and weight. I was very happy he didn't lose any weight, he's still over 19 lbs, very close to 20 but they had hoped he had gained more. We hope to keep beefing him up but it may go slower at home.

We did change his feeding tube from a 12fr (size) g-tube to a 14fr Mic-E button. This is smaller and less obtrusive. You do have to attach an extra tube for hooking up to the feeding pump but can remove it when he is not eating and you don't have something dangling down that Khyle can pull out. Many of you know that Khyle pulled his feeding tube out 3 times now, the last time resulting in emergency stomach surgery & a 10-day spell at CNMC. But being his usual self he did 'unlock' the feeding cord this morning, but we caught it early and put it back on. He was soooo pleased with himself :) I am happy with the increase in size and hope this will prevent clogging. We were having some serious clogs with the feeding pump last week and I was exasperated so they bumped him up in size. He used to have a 14 fr. before the surgery in March and we had very few blocks.

We will be going back to the neurosurgeon Dr. Keating on July 17th for a checkup on the cranium. Not sure if we will resume in-home physical therapy before then.

I would like to ask for your payers concerning our new insurance. The parent company changed providers and it means that some of our doctors are suddenly 'out of network'. We are prayerful that all will be worked out, but please continue to pray.

Khyle is doing well, will post some new pictures soon. God bless.