Monday, June 1, 2015


So, it turns out I'm pretty much a blogging failure (much like my attempt at crocheting), but I will try harder! I've heard from a lot of people who enjoy getting updates on Colin (#LLColinJ).

Before we get started, enjoy a cute picture of Colin:

Now, let's start with updates that have nothing to do with Colin's trach or g-tube :)

As many of you know, Colin has been crawling since April, which is awesome, woohoo!!  The downside being that when I put him down, he doesn't just stay there anymore.  He is everywhere and he is fast.  This means we're now working on walking with PT, yay!!  Colin's PT thought it would be beneficial to borrow a walker from our county's Early Intervention friends to help him learn to walk independently.  Here he is with his fabulous PT using the walker:

(Sidenote: notice the giant smile on his face in this picture, this is not typical. Colin is usually a hot mess the entire 45 minutes of his PT.  He will literally burst into tears the moment she walks through the door.  We're hoping he's over that)

He loves using his walker (and his toy walker) and thinks he's hot stuff.  The walker in the picture is actually a reverse-walker, meaning that he pulls it, but he was practicing standing.

Colin also has a lot to say, even though we don't understand the majority of it.  He says lots of words that begin with "B" like ball, book, bubble, baby and his recent favorite letter is "G".  We're getting a lot of "gah" and "goo".  This is pretty good, considering he has a trach and wasn't able to start using his voice until he was about 5 months old.  There are some kids that have trachs that are unable to tolerate the Passy Muir Valve (which means they are unable to vocalize since the trach sits below the vocal chords), so we are very thankful that Colin hasn't had any issues with it.  

Here are some other highlights:
*He got his first haircut from his godmother, Aubrie Davidson
*He can pull to stand
*He is now opening his mouth willingly for food (HUGE step for him)
*He went into the pool for the first time (and hated it, it was a little chilly)
*He has 10 teeth, four of which are molars
*He now has 4 fish, this is Mario:

Ok, now for the trach stuff.  Since Colin has been doing so great with his Passy Muir Valve and was doing pretty well tolerating his cap, I thought it might be a good time to try to downsize his trach.  Downsizing means to put a trach in that is smaller in diameter.  His trach is 3.5mm in diameter, we wanted to try a 3.0mm trach.  I discussed it with his ENT doctor and the ENT nurse practitioner and I got the go-ahead to do it at home.  So, I downsized him to the 3.0 and it didn't go as great as I thought it would.  It didn't seem to help his work of breathing with the cap, and even made his sats dip a little lower than they usually are.  Since we weren't thrilled with how he was responding to the downsize, we put the 3.5 back in and made an appointment to bring him in to have ENT look at him. That appointment was today.  They ended up scoping him to see what was going on in his airway.  They took a tiny camera and stuck it up his nose to examine his upper airway then went down his trach for the lower airway.  The doctor mentioned that his adenoids looked swollen and I was all like, "wait, I thought he got those out."  Turns out it might just be swelling from his surgery.  Then he mentioned his tracheamalacia, which his regular ENT doctor had told us looked better, but maybe not good enough.  We ended up putting in a longer trach since Colin was still in a Neo size, which is for babies, he's a big boy now.  Before the doctor walked out the door, I'm pretty sure his exact words were, "it looks like he's not getting the trach out any time soon."  I'm sure there are times I can be over-sensitive when it comes to Colin and his trach, but I made it very clear to the doctor that I was in no rush to get the trach out.  I am not trying to push Colin beyond what he is ready for, that was not my intention.  There is a process, and it seemed that he was ready for that next step, which he wasn't, and that's FINE!  Colin needs the trach in order to survive.  So many ask when he's getting it out, and my answer is, "When he is ready."  The trach does not hurt him, he is not sick. Yes, he will be safer once it's out, but his body just needs more time to grow and get stronger.  His lungs are obviously growing and getting stronger because he is now pretty much weaned from supplemental oxygen day and NIGHT!  Woot woot!!  Here's Colin in a super cute tank top:

The only thing to report with the g-tube is that Colin is getting the Mini-one button instead of the MIC-KEY button.  The Mini button is lower profile and sit closer to the stomach which I'm hoping helps with his granulation tissue!!  Ugh

So that's that!  He is wonderful and happy and beautiful and funny and God has blessed us so much. Colin says Adios with a double kiss:

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