Since December, not much has changed.
Lennon did have a CPAP trial in January, which went well, but now we are working on getting a mask with a better fit. We are still waiting on a sleep study to confirm his obstructive sleep apnea. Children's Mercy called today and gave us their "first available appointment" on August 21st. They've also added us to the cancellation list, so hopefully we get in sooner. He has become completely reliant on supplemental oxygen wheras in December he still had some days on room air.
In February, Lennon got his wheelchair! This is a game-changer not only for outside the house but also for just being at home. When we're traveling, Lennon and his equipment are easy to transport. He's well supported, and the tray under the chair can carry his suction machine and oximeter. There's a frame for his oxygen tank and the handles adjust so that they're comfortable for both me and dad. When we're at home, this helps Lennon to be able to sit with us and have a tray so that he can play while being supported. It's a great alternative to his stander and his bed.
The greatest thing about February was not going to the hospital! For the first time EVER, Lennon was home on Valentine's Day. He did test positive for influenza A and strep throat though. With the tremendous daily support of Nikki and the family, we were able to stay home and conquer the illness without hospitalization. (Sorry PICU girlfriends... mom wouldn't let him keep your dates.)
In the last week, We've been to Children's Mercy in Kansas City for the sleep study consultation and to Wichita for routine follow-ups. The Kansas City trip was long, but having the wheelchair definitely made it easier to manage. They also had carts to take supplies from the parking garage into the hospital. It's a little bit ridiculous how much stuff has to go with us, especially when we're trying to charge batteries for a long drive home. Our Wichita appointments all went well, resulting in one minor adjustment in medication and plans to follow up in 3-6 months.
Health-wise, we've seen some definite improvments over the last few months. Lennon is not vomiting nearly as often, even when he's sick. He's having regular bowel movements now that we've figured out how often to provide support and which combination of methods will actually result in a stool. Lennon's also lost a little bit of weight, which we think is helping his breathing. To give some perspective, he went from the 14th percentile for weight in April 2018 to the 64h percentile in August to the 97th percentile in December. His rapid weight gain was needed, but it was also hard on his respiratory system. Since December, he's lost less than half a pound, which puts him in the 94th percentile for weight.
Today was our last home visit with Kim Peterson with Arrowhead West. Since Lennon is turning 3 tomorrow, (Don't ask me how this happened!) he's being exited from the Tiny K program and will start to receive services through Bright Beginnings Early Childhood Center. Kim has actually been with Lennon almost 2 years. She came to us after his 3rd hospitalization when we were concerned about blindness. She, like us, remembers him being a rough and tumble, knocking over trash cans, splashing in the toilet little boy. She was with us through the genetic testing, the official diagnosis, and graciously rescheduled many home visits due to hospitalizations, illness, and simply sleep. I've loved working with Kim as she brought Lennon new toys and introduced us to other providers who've given additional support for him. I'm so glad that Kim will be helping with our transition to homebound services with the school district as well as his first IEP.
A few final thoughts:
- We are starting to have conversations about our next Mito awareness / fundraiser event. (Thanks to Chris Self for keeping us going in that front!)
- Some of you have asked how you can help:
- We NEED to find attendant care. Vanessa moved and my mom will likely be going to Colorado to work for the summer again this year.
- If any of you are experts on "Tidying Up" we need your help!
- We use Amazon for many of Lennon's supplies. Check out his list here: http://a.co/bs7iDS9
- Let us know if you're interested in helping out with the big kids when we have appointments or hospital stays.
- Lennon's Legacy Foundation is currently registered as a nonprofit organization in the state of Kansas. We are still working on our business plan and IRS tax exempt status. If you're interested in being on the board, please let us know!
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