So I promised I would share the results of Colton's swallow study that was done on Tuesday. Well, it didn't go so well. He was mad through the whole thing. The speech therapist that did the study couldn't get him to swallow, but he was sure trying. So it was deemed a failure. At this point, we will continue speech therapy and do exercises with his mouth to get him used to having some food in it and trying to swallow. He really seems to want to do it.
We also saw Dr. Bader on Tuesday. We got the results of the Lissencephaly probe that we sent to Maryland. The test showed that Colton has a mutation on the gene known as RELN. In order for it to actually be the cause of the Lissencephaly, Colton would need 2 copies of this mutation. He only has 1. So we are not really sure that we have found the cause of Colton's condition. The next test that we could do would be to do a whole genome sequencing. That test is expensive and we are waiting on insurance to decide if they will pay for any of it.
And, here is the ventilator story.... So we were supposed to switch to the LTV. Our home care company was having trouble finding 2 LTV ventilators (we have a separate travel ventilator). So Nick called our Pulmonologist at Riley and they have agreed to let us stay on the Trilogy until the Astral's are ready! We are super excited that we don't have to switch to the ancient LTV! They are thinking it may be 3-6 months before that happens. So we still haven't gotten Colton's new trachs either. We finally found out that the specific trach that our Pulmonolgist wanted us to switch to doesn't actually exist! So, Colton is getting a specially made trach just for him!
Today Colton had occupational therapy. I thought I would share some pictures of what his therapist does with him.
Next week Colton has physical therapy and he gets his last synagis shot for the season. Then the week after we travel back to Riley for ventilator clinic. We are hoping we have his new trach by then!
Just a reminder that we are walking in the March for Babies for March of Dimes. Please consider donating to our team, Colton's Cool Crew! This corporation supports research for premature babies and babies born with birth defects just like Colton. There is a link of the right side of the blog so that you can donate. Any amount helps!