It was a long day. Physical therapy this morning and more new ways to stretch Joey’s little neck. I also learned that what I thought was his “good” side is really his “bad” side and all the progress I thought we had made this week was on the wrong side. Torticollis fools me again. The good part was that our incredible Help Me Grow coordinator, Tina, brought our new physical therapist, Denise, and she was wonderful. I learned so much in the short hour we had together. To first place my hands on Joey’s shoulders and warm up his muscles before I start trying to stretch them. Things like how to stretch his neck using my cheek so we are cheek to cheek instead of me pushing his tiny little shoulders down. It was more to think about and more to remember, but such great information. Even better was that Tina whipped out her Flip video camera, videoed me doing this new form of stretching and emailed it to me before she left. Awesome!
After PT it was time to pack up Joey and head down to the hospital. Helmet day.
After an hour of PT and no nap he was a tired little man. When Joey gets grouchy it actually makes me giggle a little. When you have a child who has Down syndrome you often are told things like “Oh, they are such happy people.” Let me tell you right now—people who have Down syndrome are not happy all the time. They have an entire range of emotions. You’ll see the photos—this guy was definitely not happy.
Every single time we have a doctor’s appointment I walk in with the ridiculous and naïve idea that a) the appointment will start on time and b) it will probably only last 15-20 minutes. I know. It doesn’t even make sense. You would think I had never taken a child to the doctor’s office before. I know deep down that echocardiogram appointments are going to average 2-4 hours. Same with the pediatric ophthalmologist. Synagis vaccination—you are looking at nothing less than 90 minutes.
|Joey's Last Synagis shot with his wonderful nurse. She is an angel.|
Today’s appointment started with the news that it would be the longest of all of our appointments with Brian who shaped Joey’s helmet. Three hours later….
We put the helmet on. Tears. Bright red face. Trying to calm Joey down. Brian made a bunch of marks and then headed back to the room to shave off parts of the helmet and shape it up.
|Here we go.|
|And, it's on!|
|Taking a short break.|
We tried the helmet on again. Tears. Bright red face. Trying to calm Joey down. Brian takes the helmet back again.
|Here it starts...|
|And we have takeoff.|
We tried the helmet on again. Tears. Bright red face. Trying to calm Joey down.
|One last time.|
Now we had to sit there for an hour to see how he reacted and whether or not there were any painful red marks on his head.
|So tired. Waiting to see how he does.|
Brian was remarkably nice. He sat us down and explained that people would probably stare. He said people would ask questions and want to know why Joey had a helmet. I’m about 100% sure he wasn’t prepared for our irreverent comments and humor (it’s called coping mechanism). My response was that I would simply chastise any parent who asked and demand to know why they didn’t get their children helmets to protect them. Tom’s comment was that we would simply tell people the truth—that Joey asked for the helmet.
The humor continued. Brian told Tom that the helmet would develop a pretty strong odor and that it would probably remind Tom of when he played football. If you know Tom—this is the most hysterical comment of the day. Tom probably could have played football (QB? Tailback? Kicker?), but he is more of an expert in the arena of gentleman’s sports. Golf. Skiing. Badminton. Darts. Billiards. You get the picture. If it’s a “sport” that you can have a cocktail and play at the same time—Tom is very good at it.
Now we get to the actual helmet. We were given helmet “swatches” at our first appointment to pick out the color. We live in Ohio and the idea of an Ohio State helmet has been thrown around by multiple people. As a proud graduate of the law school at Ohio State and a previous season ticket holder (both basketball and football) I loved the idea. However…. And this is a big one…. Joey is having his open heart surgery at the C.S. Motts Children’s Hospital at the University of Michigan. I have no doubt that the professionals at the U of M pediatric cardiology department would probably look past an Ohio State helmet on our little guy; we thought it was probably best not to even go there.
We chose blue. The swatch looked royal blue. The helmet is a lighter blue than I pictured, but that’s okay. I think we may be going with a Cadillac theme (4th generation Cadillac dealer father) and I have a feeling that is one that will play well in either Ohio or Michigan.
So, we have a five day ramp up schedule. We start with an hour on and then an hour off. It goes up to three, then four, then five, then eight hours on and one (yes, one) hour off until Joey is wearing his helmet 23 hours a day. The way I look at it is that it will give us something to do and think about until we get to his heart surgery. A distraction of sorts. Tommy thought it was pretty cool and told me that he wanted a helmet. Then he tried to free Joey and pull open the Velcro band. Isn’t that really what brothers are for?
|Time to go home.|