Thursday, February 15, 2018

Movin' Right Along

Emmett has seen more doctors, therapists, and specialists in the last 5 years, than I have in my entire life! I can safely say that I didn't even realize how many different professions existed. Emmett has had more blood draws, sedations, tests, fittings, and procedures, than the rest of our family has combined and he isn't even "medically complex", compared to many children.
We are truly blessed that Emmett loves people and doesn't mind going to appointments. Blood draws barely phase him and he's actually disappointed when it's not his turn to go back to a patient or therapy room. The past few months have been filled with lots of appointments, but thankfully, most of them were just routine visits to check on his progress.
A few months ago, Emmett had his annual swallow study to see if he was ready to transition to thin liquids. Emmett actually enjoys swallow studies and doesn't mind sitting in a special chair, wearing a stylish lead apron, and drinking thickened apple juice with barium in it. He also enjoys the barium cookies. Sounds yummy, right? He's happy to do anything for a snack!
For the first time ever, we were told that Emmett could try regular liquids without thickening them and that he doesn't need to come back for any more swallow studies, as long as he continues to do well. He started on thin liquids just before Christmas and we were pleasantly surprised at how well he transitioned to them. Ever since he stopped nursing, we have had to thicken everything that he drinks, which meant that he couldn't even have water without adding something to it or he was at risk for aspirating. We almost always used fruit purées or yogurt to thicken his drinks, but it was still just "one more thing" that we had to pack. So, it has been a nice change for all of us.
Emmett has actually had a lot of changes, over the past several months. Here are some of the highlights: He got a new set of tubes in his ears, which has helped tremendously in regards to his health. He transitioned from full ankle orthotics to just shoe inserts, which he is doing great with. He is communicating more and more with pictures. He has learned how to go up and down stairs and only needs a little help. He was able to transition back to a regular diet, including gluten and dairy, which we are all very happy about. Emmett has always been a bit on the small side, but he was actually on the growth chart for his age, at his last check up. It may have only been the 5th percentile, but I'll take it!
Although he is making great progress, Emmett still has his set backs and keeps us on our toes. The day before he got new tubes in his ears, I had to take him for an emergency dentist appointment because he lost his balance and chipped a tooth! It required a little filing and left him with a gap between his two front teeth, but in true Emmett fashion, he just took it in stride.
The latest excitement in Emmett's world is the appearance of a very sharp, EXTRA tooth growing in the roof of his mouth. It is not one of his adult teeth, so it will have to be extracted, which likely means that another sedation is not too far in his future. The appearance of this tooth has also made it harder to keep him from chewing on his hands, which is why you may see him sporting a teething necklace, from time to time.
As I look back at the past few months, we have definitely had more good news than bad news and I am truly grateful. Is our life how I had anticipated it to be nearly 6 years ago? Not at all, but now I can't imagine it any other way. Would I like for Emmett to talk someday and be able to do the things that other children do? Absolutely, but that doesn't mean that I love him any less because he isn't like other children. He may not be able to do many things, but he can do a lot more than he used to and I know that he will continue to make progress, in his own time.
A few weeks ago, I made a video showing Emmett's progress and posted it on his Facebook page. I was going to wait to post it until I finished this blog post, but I wasn't sure when that was going to happen! Here's the link, in case you missed it:
Emmett: From Rolling to Nearly Running
 
Selfies before Emmett got tubes in his ears. I think he's showing off the gap between his teeth!

Our little superhero!
Enjoying the snow!


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  3. I am always excited to learn about all of E's accomplishments. He's one cool kid. I love you both very much.

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