Back home

Sorry, it has taken me so long to get back on here...Yes, we made it back home around 12:30 am Friday morning. It was a late night but the drive really wasn't too bad. Carson slept pretty much the whole way and we only hit bad weather in the last couple hours. We were all so glad to be home but Carson was REALLY excited. He could hardly go back to sleep for all the dancing in bed, clapping, and smiling he was doing. Such a sweet sight! We unloaded the car but it looked like a tornado hit our house until the following night.

It was so good to see Kellen too...he really made some improvements in walking while we were gone! And had only picked up a few bad habits : )...I guess that's a result of spending lots of time with Nana & Mimi : ) What are grandma's for?

Anyways, all in all I think Preston and I both feel like the evaluation went well. Of course, we would have both liked to hear that the trach would only be needed for several months or a year, or that it would only be one or two surgeries but the most important thing was that they were hopeful and have seen something similar to Carson's case before. The last day was an EXTREMELY long day for us because we had the first appointment at 9:15 and then had to wait until 4:30 for his MRI. Carson did better in the FEES, his swallow evaluation, than I was expecting. Don't get me wrong...he did NOT like it but he was able to collect himself too. (This had to be the prayers...and I was able to keep almost dry eyes.) It confirmed several things that we already knew...that his swallow is not normal and he does have difficulty coordinating the many components of a swallow but the good news...he HAS a swallow! The doctors and therapists think that many of the problems are due to decreased muscle tone in the neck, which is likely a result of nerve damage done while resecting the teratoma. In terms of feeding...our plan is to continue with just letting him experience tastes of food (not worrying about volume) and aspects of meal time. He is at an increased risk of aspiration and as we proceed with surgeries, he needs to adapt to the changes made. The challenge for me is that there is a fine line between letting him experience food and practice swallowing without pushing too far where he develops a negative connotation with food. The other challenging aspect is that we do not see daily or even weekly/monthly improvements in feeding. So we will just continue to persevere.

Carson sure made an impression on the staff we encountered in Cincinnati. Many people commented on how good he looks, and how happy he is. He was insistent on waving to every person that entered or left the room as well as people that walked past us. If the people did not wave back, Carson would wave even harder : ) Such a sweet boy!

We should get some news and hear what the big plan is by Thursday or Friday next week. The doctors should have all the scans, biopsies, and labs back by that time so they can make the best decision possible on how to proceed.

Here are a couple pictures of the boys since being home...

YAY!!! I'm home!

This was lunch time...all 3 boys were yelling and pounding on their 'trays'

Nana was leaving to go home...I guess the boys thought they were going too! (Yes that suitcase is from when Sarah & I were little)

"How can we get out there?"