Tuesday, April 24, 2012

Chinese water torture

What a rough night.  Not for Ty, don't worry.  Somehow he is sound asleep through what has turned out to be one of the worst nights I've had at Blythedale so far.  I never know what timezone "blogger" thinks I'm in, but it is 3:35AM and it is simply impossible to sleep.  I wish I never took an Ambien because it only amplifies the fact that sleep is not happening tonight. 

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!  


  1. Always praying for precious lil Ty and your family. Asking God for another miracle.

  2. Hey Cindy, Praying for you to get some sleep tonight. Last night sounded like torture. I love you all. You're a really GREAT MOM! Give Ty kisses and tell him the boys loved his "spacesuit". xoxo, Rachel

  3. I've been reading your blog for quite some time. I usually read on google reader and I don't have the option to comment. I've read about Ty and the issues with his muscle. I'm sure you are always getting recommendations and I haven't wrote for that reason and last night I woke up and thought "For all you know, she may want to hear.. it is up to them to disregard but give them the chance to contemplate it!" So.. I'm in 2 different doctoral programs. One is Oriental medicine that includes acupuncture and the other is bioenergetic medicine. Here is an article to read.. http://www.sciencedaily.com/releases/2012/04/120423162247.htm but I'd also like to look into someone who does electro auriculo therapy. It is hard to find someone but you may be able to get a referral of someone in your area through Terry Oleson. It must be electro therapy in the ear. We have a patient that is a quadriplegic after he was hit by a car 10 yrs ago. He couldn't speak, had no use of his limbs and couldn't even swallow his own drool. After having treatment 1 time per week (for a year now) he can hold his head up, he can speak simple words, he can move all limbs and can even open doors himself now. We do not know how far he can progress but certainly it would have been faster if he could have been seen more often. The point is, this medicine can do AMAZING things!!!! If you were closer to me, I'd treat him a few times a week at no charge and I'm sure you could find someone to do the same... please don't hesitate to reach out to me if you need further info. Finding a practitioner isn't going to be easy (there are only a few dozen in the entire US) but there might be someone in your area. If that doesn't work, at least consider acupuncture.. it is amazing what it can do as well.

    Best of luck to beautiful Ty and your entire family!

    I couldn't type in my info so I had to post as anon but my name is Rosie and my contact is rg.and.crew at gmail dot com. Leave out periods in first part of email..