Wednesday, May 9, 2012

Better today

Ty woke up really sweet and happy this morning.  He slept well last night.  Lou and I got a couple of hours of peace and quiet last night.  Everything seems so much better now.

I am happy to say that we began to taper his pain medication today.  Instead of every four hours, we stretched it out to every six.  After a few days at this level, we will continue cutting down the dose every few days.  I hope and pray we can wean him off his pain medication, but it's going to be a very slow process because we don't want him to be uncomfortable.  I just don't like the idea of my four-year-old on daily oxycodone or morphine anymore.  I want him to get some energy back so he can withstand more physical therapy.   

His nagging head pain is so much better, but now he suffers from pain related to muscle spasms and increased tone.  Especially in his neck, making it difficult to turn his head or sit comfortably.  We are seeing improvement in this area, though, and it is very promising.  He is in much better shape than he was a couple of weeks ago, and being home is definitely helping on so many levels. 

It has been really hard at home, but it sure beats being in the hospital.  Most importantly, Gavin has his family back and we have him back.  Ty is happier overall.  For all he goes through every single day, he smiles easily and he just wants to try and have fun through it all.

Yesterday he asked me to play "downstairs."  We have a playroom in our basement but he never used to play down there because it's cold and he prefers to be upstairs in the kitchen/den area with me.  Of course, I took him downstairs at his request and he picked out games, played with his toy kitchen, did some art on his easel - all things that were very difficult for me to do with him because I had to balance him on my knee, hold up his head, keep his back straight and pretend he was pushing buttons, picking up toys, moving game pieces, etc., but it was important.  I really think he asked to do all of these things because he wanted to know that he still can.  I thank God that he is only four years old and too young to realize his limits.  He smiled when I held the crayon to his hand and dragged it across the page because he felt like he was coloring again.  He laughed when I took his hand in mine and we punched the buttons on his toy cash register.  He yelled "I win" when I helped him fling a monkey in the tree when we played "Jumpin' Monkeys."  He needed some validation that he can still do all that stuff, and I hope I gave it to him yesterday. 

The hardest part about readjusting to life at home is the fact that Ty requires 100% attention 100% of the time.  If I am not sitting next to him feeding him tiny pieces of food, turning the pages of a book or manipulating his toys in front of him, then I am preparing his medications.  It's non-stop and it's really hard.  As soon as I try to wash some dishes, I hear him calling for me.  Poor kid.  Of course, the dishes can wait but waking up to a sink full only adds more stress.  So, I stay up late and try to stay on top of everything.  Some nights I'm getting as little as three hours of sleep.  I need to work on that!  Hopefully the revised medication scheduled will buy us a bit more time to ourselves.  Eventually all of this will become routine again.  We just need to adjust and we are getting there.   


  1. I found Ty's story a little over a year ago when my little guy (who is the same age and shares the same name as yours) was going through MRIs and spinal taps to try to figure out why he was trembling. I took to the internet reading everything I could since cancer was not being ruled out at the time. Thankfully for my Tyler it was not cancer, but he does have a neurological condition that will deteriorate his muscles. He is doing well right now, but little symptoms are starting to pop up. It's exhausting living with the stress of a child that is ill and then life on top of it! I had a melt down last evening and locked myself in my room and cried that I just can't do it anymore. I wake up today to find your post. You are one of the most inspiring moms that I have followed since I have been on this journey! Your love for your children and your strength radiate through your postings...but yet you are so human. When I saw you mention the dirty dishes I started crying again, but this time it was tears more of relief because someone else who I think is inspiring is human, too! I don't mean to ramble...too late!...but I felt it important to share my story and thank you again. My son and daughter and I continue to pray for your family. Blessings...

  2. I'm glad.. Keep being the strong and tender person you are.

  3. So glad to hear that things are better.. you are an amazing mother.. I read all your posts and don't know how you do it but not only do you do it.. you do it all so well.. I can't wait to read that Ty is sitting up and able to hold the crayon on his own and make you a much deserved Mother's Day card..
    God BLess you all and as always my prayers are with you and that precious angel of yours

  4. Never give up, big guy!

  5. I am a fellow Pawling resident who heard about Ty last year and began to follow your blog. It goes without saying that Ty is truly a superhero. However, I hope you realize that you and your husband are also superheros! I pray for you and want you to know that you remind so many people on a regular basis of what really matters in life.