Tuesday, November 22, 2011

Busy boy!

Well Cameron has a full schedule these days. He has multiple therapy appointments every day and then of course doctors visits on top of that. He is really enjoying speech and has made progress. He can now sound buh, bah, fuh, and sometimes puh. He is also still saying hi to anyone he sees and blowing kisses like crazy. He has never met a stranger.

We have been having some difficulty with his feeding. The week before last he started coughing anytime he drank or ate. Then it got to the point where e would refuse any fluids at all and that lasted a full week and eventually he stopped wanting food as well. After a week of this he was obviously beginning to get dehydrated and he started sleeping ALL the time. Just yesterday the doctors were telling us to admit him for an NG tube and to evaluate putting him on a feeding tube. Cody and I were pretty worried but instead of going straight to the hospital we took him home and by the grace of God he started drinking! He drank three bottles and ate a jar of applesauce. Thankfully we avoided the hospital. We are hopeful that he will keep up with it. We go back to the pediatrician this afternoon to re-evaluate.

We also spoke with his doctor in temple about his sleep study. We don't have the EEG results just yet. They said that he does indeed have sleep apnea like we suspected. He ha more than two apneas per hour with both central and obstructive apneas. We will go back soon to try a oxygen mask to see if that improves it or if we need to go another route.

We are excited to be taking the boys to the ranch for thanksgiving. As long as Cameron continues to eat and drink well then we will be heading that way tomorrow evening.

Please keep Cameron in your thoughts and prayers. We are hoping to avoid a feeding tube as long as possible.

Thursday, November 3, 2011

Trick or Treat

It seems like Cameron has come through to the other side of this regression-THANK GOD! He is still a bit clumsy (and because of this he sprained his thumb at the beginning of the week) but he is talking/babbling up a storm. I absolutely adore his baby talk. We have waited so long to hear it and I can't get enough.

We had a great Halloween. Caden was Lightening McQueen's driver and drove his car down the street trick or treating and Cameron was the cutest cookie monster you have ever seen.

Still no date for our muscle biopsy but we are scheduled for a sleep study soon to check for sleep apnea among other things and they will also be doing an EEG simultaneously.