Watch Out American Idol, Here Comes Connor!

Post date: Feb 2, 2012 6:15:35 AM

Happy New Year! - a month or a week late, depending on if you go by the Gregorian or lunar calendar!

So much has been going on in the past few months that whenever I think to post about it, I run into the next event. Thanksgiving and Christmas passed in a happy blur with lots of family gatherings and fun events. The boys both enjoyed stuff Santa brought them and their Christmas scavenger gift hunt. This year Connor got to hunt for his gifts too with picture clues, care of Daddy. He wasn't sure what to do on the first clue, but by the third clue he was running for the hiding location of the next gift. Ian had puzzles to solve at every turn. He was reminded that he wanted a "more challenging hunt this year, Dad." "Oh, yeah," was his reply. He had a blast.

We celebrated Ian's 9th birthday and Tet, lunar new year, on the same day. Ian was very excited that his birthday actually fell on the first day of Tet this year!

We just wrapped up festivities for lunar new year this past weekend and I have some really great pictures of the boys to share, if I ever get around to downloading it off the camera and uploading it to here.

Through the entire month of January, Connor and I spent most of our days at an intensive feeding program for him. It was a five week program aimed at oral desensitization for him to reduce his gagging and hopefully allow him to eat more by mouth. Until now, he's not really eaten anything by mouth and receives all of his nutrition via a feeding tube to his G-button. If you want to learn more about feeding tubes, that's great because next week is Feeding Tube Awareness Week!

The feeding program was interesting and we are trying to apply the behavioral modification methods we learned at home now. Up until now, feeding him orally has not been a huge priority for us as other things have always been higher. He gets all of his nutritional needs met through his tube-fed formula. However, he really enjoys the social aspects of eating and mealtimes and we want him to be able to eat by mouth if he can. After the program, I can say that his gag reflexes are definitely reduced and we've learned some tools to help continue to desensitize his mouth and tongue. He is still super-sensitive orally, so it is a long way to go before he will be eating by mouth! Now we are looking for outpatient Feeding/Speech Therapy, Occupational Therapy, and Physical Therapy so we don't lose what ground we've gained. One of the best things to come from the program was not the therapy itself, but some of the great moms I met. It was almost strange to be able to talk about buttons and granuloma, volumes and rates and have people not only understand the lingo but share tips and tidbits from a parenting perspective. I learned as much from them as I did from the "experts."

We withdrew from the program yesterday, two days early, because Connor woke this morning with a little congestion and we think he may have contracted RSV. There was at least one other child at the feeding clinic who had just tested positive for RSV and a couple of others who showed symptoms over the weekend and this week. I was hoping Connor would avoid catching it, but unfortunately he is starting to show early symptoms. Please keep your fingers crossed that he 1) either doesn't have RSV and/or 2) will recover super quickly and won't need a hospitalization!

Now we are gearing up for a month of doctors' visits. We will see all of Connor's regular doctors this month as part of a new effort to better coordinate his care by clustering his appointments and lab work. He'll see Endocrinology, GI, and Nephrology at the end of this month. He'll also be adding two new specialties and visiting with his new Cardiologist and Neurologist as well. He saw his Ophthalmologist back in October, but we think his vision has changed recently as he has been refusing to wear his glasses. That means another visit this coming Monday to see if he needs new glasses or if something else is going on with his eyes. Then to top it off, it's time for another dental visit next week with his Dentist! Whew! It's going to be a busy, busy month!

I leave you with a brief video of Connor. He is a constant source of entertainment! He got this microphone and stand from a friend for Christmas. Soon after getting it, my sister and her family were over for dinner. While we were sitting around the table talking, he drags it over in front of us. Then he leaves. He returns with the coin jar he also got for Christmas to put his change. He promptly puts the coin jar on the dinner table, then turns back to the microphone and starts to croon. We could only surmise that the coin jar was his tip jar! And we have absolutely no idea where he got that from! Just a couple of days ago, we were cleaning up after dinner when he decided to grace us with another performance that I was able to catch on tape. Watch out, American Idol!