The small boy who shares a room with us is ventilator dependent. Tonight, one of his machines has been malfunctioning. It is beeping a series of five notes, very loud, every single seventeen seconds for the last hour and nine minutes. I learned that when I'm tired enough, I can actually get to the cusp of falling asleep in less than seventeen seconds, only to be drawn back out of sleep by the incessant beeping every single time. This is chinese water torture. I googled it and found this amazing image that perfectly conveys what I'm feeling right now.
|by Yanik Chauvin|
But, I didn't create this blog to complain to you all when I'm tired and grouchy. It's to share updates on SuperTy so here's the latest.
What a great day! The best yet (which makes the awful night seem that much more unfair). Ty was such a good boy at his oxygen treatment this morning, and he was excited to participate in therapy today. That was a first! He has never shown interest in playing with his therapists before. He usually cries and requires a lot of coaxing. Today he said he couldn't wait to play and have fun with them in therapy village. I think it came as a little bit of a shock to all of us :) In addition, here is a short list of some slow improvements I've taken note of...
1. Ty's appetite is improving and the feeding therapist taught us to be tougher with him on his diet, and she was totally right. He is introducing new foods by mouth and I'm so happy. It's a fight every time, but worth it to see him eating a wider variety of food again after so very long.
2. Ty's ability to drink out of a straw has improved. This is a big deal because it means the muscles in his mouth are getting stronger, and that he has more control. Down the road, this is important for improved speech, improved chewing and safer swallowing as well.
3. Ty's head pain is a little better! This is a big one. He still requires Oxycodone every four hours, but today he didn't need any extra doses to combat breakthrough pain. In fact, he didn't complain much about head pain all day. Maybe just three or four times the entire day, and he said it only hurt "a widdle".
4. His head control is getting better. In fact, we went for a nice walk this evening with his chair tilted almost straight up, and he didn't need his neckbrace. See? Here he is during our evening stroll, after he got all washed up and sparkley clean. But don't tell Ty. He only likes to be "dirty" (such a boy) so I have to tell him I'm using dirty bathwater and putting on his smelly, old pajamas afterward. He totally gets a kick out of that.
His extremities are still pretty much the same, but I expect them to follow suit eventually. I do believe he will recover. With all of my heart. I just think it's going to take a very, very long time.
Today we started his chemotherapy again. Cyclophosphamide and Accutane for the next 21 days. I was very torn about it because I hate seeing him ingest all of those toxins, but after such a long time off treatment I was also very scared not to. I hope it doesn't start to make him tired after the positive progress he's been making. Hopefully the dosing remains low enough that it doesn't affect him much.
It's now 3:57 and I think it stopped! Yes, it did! The alarm that started at 2:24 this morning has finally ceased and I think I might be able to get a couple of hours of sleep before we get up for oxygen treatment at 6. I'm excited so I'm going to sign off for now. More soon! I'm just going to leave you with two adorable pictures of the best boys in the world. Thanks for your continued love and support. And thanks for the ear when I had some complaining to do tonight. I can't exactly pick up the phone at 3AM (not that I ever pick up the phone, anyway, I'm not a big phone person).
In Ty's picture my Long Beach friends might recognize the tie-dyed Michelle O'Neill tee from the year we moved upstate. He was randomly wearing it today and then I saw on FB that it is her 40th birthday!