5 Months Old!

Once again I apologize for the long time between posts. Spring is finally here and we've been working on some things around the house. Nick and my brother Dan have been working on a new everyday table for our house. It's about done and I can't wait!  They have built it for red oak and it's extremely heavy. It just needs to be sanded, stained, and polyurethane applied. We are still debating on which stain we like the best.  Since Nick and Dan have been working on the table, Nick has been getting the wood working bug. We now have a pretty good set up in the garage with some new tools. Haha.. I now have a new potting bench and a honey do board on Pinterest!  Nick thinks I'm funny :)

Now on to why you are actually reading this blog... Colton is 5 Months Old! Here is our biggie boy....

So the last time he was weighed he was 13 pounds 3 ounces. That was about a week ago. He is totally amazing us. You can see from the pictures that Colton is starting to sit up better. He is getting so strong in his arms and legs. He now pulls things towards his mouth especially his bunny that he got for Easter. He is constantly kicking his legs. When occupational therapy was here last Monday we put him on his belly and he started pushing him self up with his arms. He now sits in his bumbo, but we have to hold his head. He likes it if you put something fun in front of him to play with. 

Here is my favorite thing that has happened in the last month!

I am absolutely in love with his smiles. He loves to look in the mirror and smile at himself. 

In the last month we had appointments with Dr. Smith the surgeon and had a visit with our Pulmonologist at Riley. Dr. Smith said everything looks good. His g-tube should last for another year or so before we need to change it out to a new tube. Nothing changed at the Pulmonologist this month. We finally got Colton's new trachs on Wednesday. We have decided to wait until the Monday before we go to Riley again to put in his new trach. I know that we are going to have to adjust his ventilator settings, so I want him to have the least amount of time possible on the wrong settings. So he gets his new trach on Monday May 18th. The goal is to be able to wean the settings on the ventilator but we can't do that until his leak is gone. So when he gets his new trach we won't be able to hear our boy anymore. Hopefully it will just be a temporary thing.  

Recently we've been having problems with our nursing care. One of our nurses that covered a lot of our shifts quit. Our company is having a hard time finding qualified nurses (RN or LPN) to work with Colton since he requires a higher level of care due to the ventilator and trach. If you are interested in helping please contact either Nick or I. 

I want to thank everyone who walked, raised money, and spread the word for our March of Dimes Campaign. Even though it was a rainy day and somewhat cold, we had a great time! As of right now, Colton's Cool Crew is the number one family team for the Fort Wayne walk!  

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!