"Stryders Journey"

WOW! Today was a great day at the garage sale. I can't say thank you enough to those that organized it (Barbara and Dianne) and those that donated money and items for our cause. We had a great turnout and there is a lot more for tomorrow.

Stryder did great today, but I always worry about the aftermath because he doesn't complain about anything and seems so happy. He didn't complain at all today and was in great spirits. He had a big seizure last night-it scared me because he was stiff as a board and then just yelled and screamed afterward :( We came home today and he was crying and yelling and not happy. It was just too much and I have to learn to say it's time to go. He is asleep on the couch right now and my only hope is that he goes seizure free tonight.

Two more weeks and we go to the Mayo clinic. It's starting to really hit me: I will miss my husband and daughter terribly. As it stands, Stryder has appointments set for two or more every day for the entire six week period so I am hoping that time will go by faster and we will get some results, and good results.

We still need to send in our bloodwork for Dup 7 syndrome, and the answers will take 6-8 weeks. It will be good that we will be gone during that time so I won't be waiting for the results.

In the meantime, I have started to sell CTMH products and will be having more scrapbooking and card making workshops so that I can sell things to help raise money for other children that are going through hard times too. You can see some of my work at my NEW blog http://stryderslist.blogspot.com/.

Thanks again for all of the support- it means more to us than anyone will ever know!

We have stopped to smell the flowers:


Just a few more weeks until Stryder and I leave for the Mayo clinic for his intensive therapy/; it's been a long road. Prior to going to the Mayo clinic we were told that Stryder may never talk. After we got back, Stryder has learned a lot of new words, so I am very hopeful. I can't express what i feels like to finally have someone tell you that he will talk and actually see proof in it. Up to that time we only heard "I don't know what else to do for your son" and that was a hard pill to swallow every week. We tried everything, well not everything obviously, the thing that works was the last. I have felt that there is an end to this long journey and got reassurance that "Apraxia" will not be with him forever and for that, I am grateful!

Now, our new journey: he is having problems walking long distances and not even that long of distances. We went to the Shriners after he was evaluated and accepted and the Dr. there said that he has the same physical problems that children with Downs Syndrome have. I don't know what that really means but what I do know is that his legs start hurting just walking to the mailbox and you can't put him on your shoulders because his hips pop out. It really makes me sad because it seems as though it's getting worse for him. Just going around the block (it's a large block) we have to stop and rest for a good half hour. I don't know who we talk to about this or what to do. His X-rays on his hips look good so far, but we have to go back every year to make sure there are not other problems. He can walk and play inside okay, it's just the actual task of walking that puts pain on him.

I asked the question, "Who do I go see- anyone know?" on the Apraxia message board and it was brought to our attention that we should ask about EDs .
I remember looking at this before we went to the Mayo and I forgot about it with all the new information we got. Now looking back, it looks as though this may be worthwhile. When we were at the Shriners, they did the flexibility tests and he could touch his toes to his shins, touch the back of his fingers to his wrist, all of it. Next month while we are at the Mayo, I will at least raise the issue of "could this be Ehlers-Danlos?"

We finally got Stryders Speech therapy appointments scheduled for the Mayo Clinic. I am really nervous about going, but excited too. We will schedule the other visits that he needs as we are there. The system at the mayo is wonderful!

Stryder is doing great with his speech! I am so proud of him and I know that it is because of the prayers that everyone has sent us! He is able to speak many one and two word sentences, and clear at that. I am amazed at his progress! Miracles are happening abound here and I am amazed that God chose us to be a part of His Journey!

Also, Barbara, I call her our Angel, is getting a (or two) fundraiser going in our area. She has done so much work to get this thing going and words cannot express the gratitude that I have for her. Before she came along, I was so alone in all of this. I didn't know how to get money or help to get Stryder back to the Mayo or how to even get help for his therapy here. It's truly amazing what one person can do. (My sister-in-law Tera has been amazing too, a huge mental support, to say the least)

Here is a copy of the fundraising flier I designed with Barbara's help:

Just click the picture to make it full size and print:


A lot of us with children who cannot speak will have to guess what our kids do at school or daycare. Someone on the Apraxia message board put a great link to a resource that will let us know what our kids did during the day,but unfortunately, the site got hacked and the image is no longer. I wasn't able to save it so I did one by memory for those interested.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Our neighbors across the street came a couple weeks ago and said that they were having a garage sale to help raise money for the city, it was called "GeneroCity". It was the first time I met her and I was out making crafts to sell to raise money for Stryders Care, so I told her just a little about our journey so far. She came by last night and said that she asked her Pastor if we could set up a small table to raise some money for our cause and he said absolutley!

I met some tremendous people with big hearts. I sold the cards I made for $2 each and made close to $60 with very few cards. Neighbors in the area came by and one in particular, Barbara, came back and OMGosh, her heart was so generous. She wants to help us make some money by doing another garage sale, bake sale or handmade sale- something....She made me feel so good. I do not do these things for a handout, I don't want that. Yes, we really do need funds for Stryders treatment and ongoing medical issues, but I want to work for the money; I want to make things and sell them and I try very hard at that. My dream is to continue and make money for other people that have the same problems with their children and the medical help. We have great insurance and yet it still doesn't cover everything. The bill for the Mayo, for one week, was over $9,950- I can't imagine what someone without insurance, or even good insurance, has to pay. I want to help them and right now I want to help my little Stryder.

Crafting for a Cause! Let's join together and help people with our talents-

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.