Thursday, September 20, 2012

Swallow Study

Yesterday I took Colin to Children's Hospital for a swallow study. We meet with a speech therapist who talked to me at length about Colin's issues and the concerns we have for him.
We then went down to the x-ray room and we feed him some food and drinks all while watching it on a video screen.
They determined that he does have a slight aspiration. To try to keep this to a minimum we are to not let him drink from a straw or an open cup. By limiting him to a sippy cup he has to take smaller sips and not overflow his throat and airway.
They feel that the aspiration could be a small part of the issues he has been having but they do not feel that it is the main cause or the sole reason for all the cases of pneumonia and breathing issues.
  They also informed me that he has a  laryngeal cleft which means he has a pin size hole in the muscles that go to his vocal cords. Since it is a stage one that means that they will more than likely not do surgery and he will have to learn to eat and drink carefully so that as little fluid as possible enters into the airways.

I felt so defeated after his appointment when looking up the statics for the cleft it said that only 10,000 to 20,000 babies are born with it each year.

I am grateful that we are getting answers and we are putting pieces of this puzzle together, however I wish we could get answers faster and sooner, because the wait is weighing on me.

I keep looking at the calendar and knowing how close we are to colder weather and more colds and illness it makes my stomach turn.

Saturday, September 8, 2012

Colin

Colin has had one of the best weeks he has ever had. He has been super happy, sleeping well, no breathing issues or cold.
It has been so amazing to have my happy boy.
I so hope we can figure out what keeps causing the pneumonia so we can have more weeks like this.


Awesome Saturday

<p>Today was the first Saturday Chris had off in about a month and a half.<br>
The weather was supposed to be awesome so we planned to go hiking.<br>
We went to Powder Valley to do some hiking trails. We got done with that early and so decided to go to the transportation museum. I had some free admission coupons.<br>
After playing there for awhile we went to lunch.<br>
The kids napped on the way home. Once home Chris took the kids to the park and I took a nap and then ran to wal mart for some things.
After we both got home we walked over to the church carnival. It had a bounce slide, games and bands.
The kids had a blast.
We are now home, the kids are in bed and I'm sitting outside listening to the last band of the night from the church.
The kids were fantastic today no fits, no tears and lots of smiles.
It was just what the family needed.
It was a great day!!