Monday, April 6, 2015

4 Months Old!

Don't you all feel lucky?!  Two posts in two days, I'm on a roll ;) Don't get used to it though! Anyway, Colton is 4 months old today.

We had his 4 month pediatrician appointment this morning and he did well. He is 12 pounds 10 ounces (5th percentile), 26 1/4 inches long (90th percentile), and his head is 16 inches (25th percentile). The good thing is that he continues to grow along the same lines that he was. His head is growing which we are thrilled about. Of course he continues to be very long. He didn't get any shots today as he got those at our last appointment. Our next appointment won't be for another 2 months!  We are finally starting to get to stretch out our appointments.

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.

Yes, he is on an exercise ball! She is so good with him!  She was impressed that he is now trying to reach for somethings if you put them close enough. She also liked that his feet were easier to manipulate due to the shoes he's been wearing.

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!

Sunday, April 5, 2015

Colton Got A New Ride!

Happy Easter everyone!  We spent yesterday at my parents house for dinner and family time. Colton had a great time being loved on by grandma and grandpa. He pretty much got held all afternoon :)

His feet say Happy Easter on them! 

So about a month ago Nick and I started discussing that it might be easier to travel with Colton if we had a different vehicle. We were thinking that we would look at either a bigger SUV or a minivan. We decided that a minivan would be the best option. We were trying to decide between a Toyota or a Honda. I think I mentioned that we rented a Toyota Sienna when we went down to Colton's appointments at Riley. We liked it, but there were a few things that we didn't like: The floor of the back has rails that the seats slide on and those hurt when you are trying to lean in to get something. The other thing we didn't like was that when sitting in the back there was a ton of road noise. I couldn't hear Nick when he was talking to me. So we went and looked at a Honda Odyssey. Guess what, really quiet and no rails to lean on. So we ended up buying a 2013 Honda Odyssey. I love it!  It is so much easier to get Colton in a out of since the doors just go back and don't open wide. There is so much more room on the inside and we don't feel like we are crammed inside with all of Colton's stuff. It drives so quiet and so smoothly!

We had appointments this past week with Dr. Bader, the geneticist, and a swallow study. Colton's 4 month appointment is tomorrow, so I will update you on those more tomorrow. I also have news on the ventilator situation!