Hello Everyone,

Here's the April/May recap:

Tyler has been doing pretty good. He has had no sicknesses or infections since February which feels amazing. Since his health has been great we've been putting a lot of focus on rehab and therapy. With the help of his Occupational and Physical therapists I have created a mass spreadsheet with all of the exercises we've learned. I then created a daily workout schedule that is easy for the caregivers to follow and accomplishes all the tasks that the therapists keep saying are the most important. At first the therapists's goals for Tyler felt very daunting. Every visit they just kept pushing that he needed to be doing this and that and oh don't forget this and this should be done 5 times a day and this is so important. It felt impossible to accomplish everything they wanted everyday but once I typed it all up and figured out how to spread it out and create a game plan it started to feel a bit more manageable.

He's been getting in his wheelchair (not the electric one but the one that forces him to really sit up straight and engage his core) twice a day and he now can sit in it for around 2 hours at a time which is a big jump from when we started with the wheelchair. Tyler's been pretty motivated as well. I've on multiple occasions walked in on him doing his own exercises in his chair when no one is around so I think he's really eager to get stronger. My thought is, as long as he feels motivated he'll keep improving. His left arm is getting stronger every week which is really exciting to see. His left side is the weaker and so seeing it catch up to the right is always important. Just in the last month he's gone from being able to bring his left hand to his shoulder twice in a row, to know being able to do it 6 times in a row so progress is being made! 

The therapist have been occasionally laying him on the floor and flipping him onto his stomach to stretch out his back. The place a large therapy block under his chest so he's getting a good stretch in the back and shoulders. Because he's been in a bed for so long he has acquired a slight curve in his upper spine/neck that they've been working hard to reduce. They've seen great improvement though so what they're doing is helping. When he's on the floor and on his stomach they're able to massage his shoulder blades and lower neck and that's been really helping.

Tyler's been doing really well with eating purees so we've gotten the okay to feed him food on our own when speech therapy isn't there which Tyler is super happy about. Currently his go to's are guacamole or applesauce pouches. We can only give him one serving of real food a day but that's a big step from nothing. The speech therapist starting experimenting with thickened smoothies this week and I think we're starting mashed potatoes next week so that'll be a new texture. His deep breathing is also getting much stronger. His exhale is still a bit weak but we are doing breathing exercises 3 times a day so it'll come. Since the inhales are stronger he's able to phonate a lot more often. His diction with his tongue and teeth is still a bit rough so understanding what he's saying is still hard but he's able to get sound out most of the time he tries. 

A very big update is.... Tyler got his Trach removed last week! It was a very exciting step forward. They capped his trach for a few days and since his breathing didn't waiver at all they said it was time to remove it. Tyler hasn't asked for suctioning in 2 months so his coughing did increase but it's because he's managing his secretions on his own instead of getting it pulled out. He has continued to strengthen those throat muscles and has been more successful with managing it all on his own. He does still have small coughing fits here and there but mostly when he gets repositioned because things are moving around inside. The small hole where the trach was is still healing but they said it will be completely closed in another 5-7 days. Tyler said it doesn't feel too different now but he said he feels more comfortable in certain positions because there's no longer a plastic tube in his throat. It's also a great step because the trach site was such a danger zone for infection so having it gone removes that stress. It's also one less thing that my mom and I have to clean and change gauze ect. Also since the trach is gone he no longer needs the mister on at night so it's one less machine to rent and one less thing to clean haha

Yesterday was also a big milestone because...Tyler and I went and saw a musical! Tyler's therapist has been encouraging him to venture out of the house more and do activities that he used to enjoy so he asked me to look up any live theater performances nearby. Well a local community theater was doing Tuck Everlasting which is one of Tyler and I'd favorite shows so yesterday we had a little brother date to the theater. He said he was a bit anxious about going but that he was excited to try something new. Our tickets were right near the lobby doors so I told him if at anytime he wanted to leave or needed to go to the lobby we could easily pop out. I knew the theater pretty well so I knew it was wheelchair accessible and had a spacious lobby and theater so it would be easy to maneuver the chair. The show was really cute and we both really enjoyed it. In the car home, Tyler gave the whole experience a 9 out of 10 so hopefully there will be more theatrical adventures in the future

Thank you as always for following along on Tyler's recovery journey! <3

-Dalton