Archive for May, 2008

Free Way to Donate Money to Samuel

May 6, 2008 | Updates

Just a quick post here.  Many of you are used to using Paypal.  I know I am.  Well, there is a new company opening up called Revolutionary Money Exchange that is hoping to rival Paypal.  It is a company run by the former Chairman of AOL, Steve Case.  Anyway, you can read about it at the Washington Post or Digital Money World or USA Today. The kicker is that if you sign up before May 15th, they give you $25 free. And if I refer you to their site to sign up, not only do you get $25, but Samuel gets $10. You just have to make sure to sign up and then sign in and accept the money. You can either have it transferred to a bank account for free of you can request a check for a $2.50 fee. It is a bank account, so it does request some personal info required by law. But the company is legit as far as I can tell and I went ahead and signed up. So, if you feel good about it, go for it. Once you do, you can refer friends yourself and be the beneficiary of the $10. And we’ll put the $10 we get towards future therapy! Click below to sign up…

Thanks,
The Jewkes

Trip to ABR - Day 9

Updates

Saturday, April 26th

We left this morning at 6 am. We had decided that since it was only about 2 extra hours of driving, we would drive down to New York City and then to Hartford, Connecticut. Going across the border went smoothly. And it was a beautiful drive back through the Adirondacks. We did encounter another border patrol about an hour back into the U.S., but they simply asked us if we were all American citizens and then let us pass. We ate breakfast in a cute little town and then finished the drive to New York. The only annoying thing was all the toll roads we had to pass through. I ended up spending $20 just to be able to drive into and then back out of New York City. That’s crazy!

Once we got to New York, we discovered there is simply no where to park in downtown. There are cabs everywhere and all of them have dents in them. People walk across the streets all the time despite the color of the lights. And everyone honks at everyone to the point that you can’t even tell if they’re honking at you. We finally found a place to park and were able to go to the Empire State Building. We ate lunch in a little café on the ground floor and then took the tour on the 86th floor. It was an awesome view of the largest city I have ever encountered. This picture is in the cafe.

We spent a long time up there just looking at all the sites in the city we will probably never actually see up close. You could see Central Park, Times Square, Ground Zero, the Chrysler Building, the Statue of Liberty and tons of other things. I have to admit it was pretty cool. But at the same time, I was completely unimpressed by the fact that they tried to sell us something at every turn in the tour. They wanted you to buy maps and binoculars and tour guide tapes. There were extra charges if you wanted to go to higher floors or take movie virtual tours. And you literally had to walk though a place in line where they took your picture.  There was not option not to walk through it. (Our picture is hillarious as I was not happy to have to stand for it and Tom was goofing off knowing we weren’t about to buy one. To view it, click here. You have to click on it to enlarge it.)Even at the end of the tour, you had to walk through the gift shop to get out of the place. It was a little much for me. But here are some cool pics from up there. (Click on them to enlarge.)  In the first one, you can see central park.  In the second one, you can see Times Square.  The third one is just another view of the city.  The fourth one is of Tom and Samuel back inside on the 86th floor.  And the last one was an irresistable picture since those are the elevator doors that Meg Ryan took to the top of the building in the movie Sleepless in Seattle.  We only got to see those doors because we couldn’t take the regular tour route due to Samuel’s stroller.

                    Once we got back to the car, we headed to Hartford. When we got there, we stayed in the same hotel as we had on the trip down and basically just carried our stuff in and went to bed. It would be an early morning again the next day.That night as I was falling asleep, my phone beeped and I picked it up to find that my sister had sent me a picture of Tanner and his date at Junior Prom. I had thought of him and his “big day” probably 50 times that day. It was very hard to miss being there with him. I wish I could have been. Sometimes I hate that I have to miss things in life because of what happened to Samuel. My other boys are incredibly important to me also and I wish there was some way to be two places at once. But I am so grateful to those in my family who took the time to take pictures for me and make sure all went well while we were gone. Thanks, guys! Until tomorrow…Love,
The Jewkes

Trip to ABR - Days 7 & 8

May 5, 2008 | Updates

Thursday, April 24th

Therapy again today. Mostly just more practicing of the technique and talking about ways to do the therapy with Samuel. Samuel is a bit of a difficult case for this therapy because he is so active. This therapy really requires the child to hold still. But we can get in our hours during his naps and after bedtime. We also talked about different positioning in his chairs that will allow us to work while he is awake. We are also taping the technique to help us remember everything when we get back home.

At the end of the day, we did try to find an underground mall we had heard of in the heart of Montreal. We weren’t successful and when we tried to figure out how to ride the subway, we found it was impossible because everything was in French. So we decided instead to follow our map to Old Montreal. That turned out to be really fun as Old Montreal is the oldest part of the city and has old brick roads. It was very quiet in Old Montreal and we were able to visit a few shops and buy some little souvenirs for the kids. We also found a beautiful cathedral and determined to come back the next day to go inside it. (Below is a picture of the little shops and one of us eating in a little cafe there.)

Friday, April 25thToday was our final day of therapy and our final day in Montreal. Knowing that, we got up very early and headed back to Old Montreal to see the cathedral we had visited the day before. The cathedral was breathtaking and very interesting to walk through. It was a nice quiet time and we were glad we had gone. We then walked the streets of Old Montreal for a while and even visited China Town before it was time to head to therapy. Below are 3 pictures of the cathedral and then a picture of the heart of Old Montreal (if you look close, you can see Tom & Samuel).  Last is a picture of Samuel and I in front of the entrance to China Town. You’ll have to click on them to see them larger.                Therapy has lasted normally about 3 to 4 hours each day this week and today was not different. We finished our training and reviewed some close up details and then received our individual DVD’s to take home. We then said good-bye to our trainers and the other families. It was sad to see everyone go, but at the same time, I was getting really homesick and was glad to be heading back.That night, we took a walk on the Jaques-Cartier bridge not far from our apartment. It was a nice walk and the bridge is absolutely incredible. It is so high above the city and the view from it was neat.  Here are a few pictures of the city below.  (Again, you’ll have to click on them to view them larger.)           That night, we packed everything up so we could leave early the next morning. It was time to go home, and I think we were all ready!More tomorrow…Love,
The Jewkes

Trip to ABR - Days 5 & 6 and Samuel’s Big Evaluation

May 3, 2008 | Updates

Tuesday, April 22nd

Today was another long day. Not much occurred, however. We got up and did some wash and dishes around the apartment. We also did a little more grocery shopping. We spent another 3 hours or so in ABR training. The training is different. It is such a simple therapy and yet it is so complex. You have to position yourself very specifically and ensure you are facing the child in the correct manner. You then fold and place towels and foam on the child and then apply the slightest amount of pressure to the towels. It is a very slow and precise pressure and when done correctly, you can feel the pressure deep inside your body and it radiates out from where the towels are placed. If you do it incorrectly, it is a superficial pressure and does not accomplish anything. Despite practicing for days, we still haven’t figured out exactly what we’re doing. It seems like such a simple thing, but it is very difficult to do correctly.  Here are a few pictures of our trainer and myself doing ABR on Samuel

               

I discovered today when I put Samuel in a short sleeved shirt instead of a long sleeved one that he has been banging both his arms against the plastic tabs on the carseat that are supposed to be guides for the car seat belt. I had to pad the tabs with diapers and diaper cloths, but unfortunately, he already has tons of bruises on each arm. This new stroller/carseat has proved invaluable on this trip and I would recommend it to anyone traveling with a young child. But these things just go to show how difficult it is to seat Samuel anywhere as he simply does not understand that he is hurting himself as he flails his arms and legs around.

So, that was pretty much it for today. Just putting in the hours of ABR makes for a long day.

Wednesday - April 23rd

Today was Samuel’s evaluation by Leonid, the inventor of ABR. Of course, this morning Samuel rolled off the rug on the floor of the apartment and banged his lip on the hardwood floor, so we had to bring him to the evaluation with his scraped up legs, bruised arms and bloody lip. Man!

The first part of the evaluation, we were able to ask questions that we had. The main question I had was whether or not ABR would help with Samuel’s arching. Leonid said that if anything would help with Samuel’s arching, it will be ABR. He them explained 9 points on Samuel’s body that are out of place or lacking correct form that cause the arching. It was very interesting and Samuel was very good to lay there while Leonid was discussing it all with us. I think Samuel really liked Leonid’s voice as he has a heavy accent and speaks very loudly. After a bit, Samuel fell asleep and we were able to discuss a lot of things with Leonid.

After he answered our questions, he began his evaluation. Samuel was fairly unhappy about being handled and moved around, so it was a long hour and half or so, but we learned a lot. I have been so happy that Samuel is so flexible and that he doesn’t have any of the classic tightness in his body that normally comes with CP children. But what we learned today showed me that I was simply unaware of where the tightness was and the deformities and changes that have been occurring in his body over the last 3 years. Below is a list of what I can remember from the evaluation.

1. Samuel’s lower jaw is set about an inch and a half too far back into his neck.
2. The front of his neck is very, very weak.
3. His trachea is basically collapsed and extremely weak.
4. There is no definition between his head, neck and shoulders.
5. His adam’s apple is set up above his jaw and chin when it should be well below it.
6. His collar bones are misaligned.
7. His chest has lost a huge amount of volume and his ribs have flared out.
8. His ribs are extremely compressible with just the slightest pressure.
9. His shoulder blades have become part of his arms and move everytime he moves his arms when they should not.
10. His back is so weak that it is collapsible at every point and allows him to move into positions that the body should not be able to move into.
11. His pelvic floor has literally opened up and thus his hips are free to move in ways they shouldn’t.
12. The ligaments and smooth muscles that hold all of his joints in place have deteriorated so badly that they allow the joints to slip out of place and compress into each other – thus giving the impression of extreme flexibility.
13. The skin on his back and neck has detached from the underlying muscles and can be picked up and pulled away from the rest of his body because the muscles are so degenerated.
14. All of this contributes to the facts that he cannot support his head, that he cannot sit up, that he cannot swallow, that he cannot talk and that he arches so badly.

The evaluation was difficult to see. I will see if I can’t post some of it on drop shots and if not, I will at least try to post some pictures showing what I’m talking about. I had hoped and prayed that we had made the right decision to try ABR up until we completed the evaluation. Now, I am SO HAPPY that we came! This is a therapy that we will do daily with him at home for years to come, but I believe it can have a vast effect on him.

We weren’t able to do much more than therapy today. It takes a ton of time to just drive the few miles to therapy each day because of all the traffic here. And we spent some time after therapy sharing experiences with some of the other parents there. It makes for a long day, but I am glad we’re here.

More tomorrow…

Love,

The Jewkes

Trip to ABR - Day 4

May 2, 2008 | Updates

Monday morning, April 21st, was our ABR evaluation. A trainer looked Samuel over and showed us how deformed (for lack of a better word) his body has become since his accident. There are many things I knew had occurred, but many of them, I had not noticed. About half of it I had realized on my own. The other half, surprised me. But, these are all things that ABR will fix. And, they said that ABR will help with his arching, but that the inventor himself would have to address that when we saw him on Wednesday. We then had 2 ½ hours of training on how to apply ABR and practiced on each other. Samuel was kind enough to sleep through that training for us :)!

That evening, we decided to go into the heart of town to look around and eat dinner. It was rather late – about 8 pm – when we went. We found a place to park and started walking around. It was odd because we could hear people cheering and it seemed to be all around us. We thought there must be a stadium nearby and a game of some sort going on. We had seen flags on everyone’s cars and in everyone’s windows and finally determined they were for the Montreal Canadian’s hockey team. We figured a game must be going on.

As we walked farther, we noticed there were people everywhere in pubs and bars and restaurants and standing outside of them, watching any TV they could. And they were watching hockey. But everytime someone would score, EVERYONE would cheer. It was the oddest thing because it sounded like the entire town was the stadium! And it made it more intense that most of the restaurants had these huge windows that they had pulled completely back so there was nothing between the people inside and the street outside. We also noticed that there were police on every corner. And we finally figured out where the stadium was and it was several miles away. We didn’t really understand what the big deal was. (You can see in the picture below how the windows on the restaurants open clear up leaving nothing between the people inside and the streets outside.)

We found a Hard Rock Café to eat in. When we went inside, the place was packed with people. And there were TV’s everywhere all tuned into the hockey game. But it was like you were in the stadium again with people singing and stomping their feet and cheering. We found a table and ordered and sitting there in that restaurant, it became clear how big of a deal this was for these people. Everytime there was a score, the cheering and singing and stomping was so loud! It was incredible. We kept commenting on how excited these people all were about this game.

When the game ended, everyone got up to leave. I said to Tom that we were going to be in for a TON of traffic. So, we paid our bill and went to find our car. But there wasn’t that much traffic. Apparently, most people don’t own cars and had just walked to where they were. So, instead of cars everywhere, there were people everywhere. And I mean everywhere - not just on the sidewalks, but congesting the streets! It took us quite some time to reach our car and I can tell you that I didn’t see one other child that whole entire night. I was getting a little concerned that everyone there seemed to know this was not a night to have your child on the street with you. That and the 100’s of cops we saw made it a little disconcerting. And this was where I learned my first French words very rapidly. They consisted of “Excusez-moi” (excuse me) and “Attention!!” (watch out) as I tried to keep everyone from stepping on Samuel.

We finally reached our car and drove home. I later found out this was the last of a 7 game series between Boston and Canada. Boston had won 3 games and the Canadians had won 3 games. This was the winner takes all final game and the Canadians won 5 to 0. We got home about midnight. It was soon after that – just a few block from where we had been – that riots broke out in the streets and at least 5 police cars were trashed and then set on fire. Shops were broken into and fights broke out. Montreal sent out their riot police and it took about 3 hours to clear out the streets. Man, oh, man, I’m glad we got the heck out of there and I’m glad they won the game! What would’ve happened if they had lost!

Until tomorrow…

Love,
The Jewkes