"Stryders Journey"

Yesterday my sister-in-law drove Stryder and I to the Shriners Hospital in Portland. It took us close to four hours, I think, but we stopped before the appointment and were able to have breakfast at Starbucks because my good online friend, Sam, sent me a Starbucks gift card- Thank you Sam!!!!!!!! It was a relief and a great break before a stressful day.

After our coffee and bagel, we went to Shriners. The people there were great! Poor little Stryder had been bent and fiddled with, but he did everything they asked. They were bending him all over and gasping at how flexible he is. They even tested me and said that I have some of the same flexible joints that most others don't have.

Stryder went in for an XRay of his hips because they seem to pop out all the time and the good news is that they look great! There is no damage or anything right now. The bad news: Stryder has the same physical problems that children with Downs Syndrome have, but as the DR. said "he obviously does not have Downs Syndrome." He said that they are the hardest children to work with because they can't do anything medically with them and things just get worse as they get older. The Dr. told us that after the age of 4 or 5, closer to 6, they start to show the problems in the hips, but again, can't do anything about it really. He said he calls them Gummy Bears and that is the perfect way to describe Stryder! I have always felt that he feels almost dead like the way he squishes, but gummy bears are so much more appealing (and squishy). My sister-in-law said that we will just call it the Gummy Bear Syndrome. How else do you explain to people that he has these problems?

I suppose that means he is a Shriners baby now :) We go back next year to check for anything that might be problematic and every year after and just pray that he doesn't get any worse and just stays flexible only.

I suppose I should start keeping up on this blog- I apologize for the long break, things just got a little out of hand recently.

Stryder is doing great! He got his new iChat and can even bring it home. The hard part is remembering to use it all the time. He is pretty shy at school with it and the other day we went to watch part of his class and he was so quiet, wouldn't say a word the whole time. I suppose that is where his disability really shows. We were told that the Mayo clinic may have a better machine they might recommend for him and his needs, but right now I love that he has a way to say things he cannot.

At home, Stryder plays with it a lot, trying to get used to all the buttons. He is a fast learner, which is great! Dad, on the other hand, is having a hard time LOL.

We went to a Shriners clinic where they determine children who might need services through them at Portland. They were so nice and said that whenever we need anything, to just call. I'm sure they understand the stresses that come with the problems our children have.

The DR. looked and watched Stryder, twisted his arms and legs and said that it wasn't normal but that Shriners deals with the skelatal system and not the ligaments and things and would probably look at him and say nothing was wrong, when obviously there was. He then was watching him walk and jump and realized there was more to it than his loose joints and had him lay down. That's where he moved his hips around and said "Oh, now there is a Shriners issue." Needless to say, Stryders Hips, Femur and pelvis are whacky and that is probably the cause for the way he shuffles, not his loose joints. He went on to say that Stryder has two issues: One is metabolic and that the Mayo clinic is the absolute best next stop and glad to see we were going. Two, he has some hip problems that may or may not be able to be fixed until Shriners takes a look.

It was disappointing to say the least. I was really hoping that it was one thing and one cure- although we know there are other problems, at least that his joints and muscle tone were one.

It's hard to watch him walk when he is tired. He almost looks like someone is dragging him. his ankles turn completely in, too. But, he keeps on going, acting like nothing is wrong.

I am excited about going to the Mayo clinic, but nervous at the same time. We have to check in for his first appointment at 7:30 in the morning and the entire week is DR's. We have been blessed with enough donations to get the hotel payed for already. We were going to stay at the Ronald McDonald house but they do not take reservations and we wouldn't know until we got there if there was room, and they are pretty full right now. This way we can buy groceries and cook in the room, save us some money-we hope. The flight is almost taken care of too. I should find out in the next day or so. Now we just have to get enough for the DR's themselves- oh I'm not looking forward to that.

We also have another appointment next week to check the lumps on his neck. I haven't been watching them at all, but I am sure counting on all the prayers kicking in and that we don't have that to worry about too. I'm pretty confident.

Oh, and one last thing. I have started a non-profit organization in honor of Stryder. It's a one stop crafting directory and more. We plan to have monthly classes and events, plus everyone can put their blogs on there, stores (online and brick & mortar) and even put reviews of all those stores. All money raised will go to pay for other i machines for children who do not "have a voice". Most of the states already have stores located in them, but I am adding them one at a time- the great thing is, you can add any you know of too. It's very easy!

Come take a look at http://StrydersList.com and let me know what you think!