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
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May 4th, 2008 at 5:13 pm, Natalie Says:
Wow, Teresa. What a crazy, busy trip! I am so glad you have taken the time to share all the details with us–I appreciate it! It’s so neat to read about this new therapy. I hope and pray that it helps Samuel! I am just once again amazed at your resilience–after one bad apartment I would have fallen apart! You are so awesome, girly. Can’t wait to read more! Take care and have a great week!
May 4th, 2008 at 8:36 pm, Cindy Taylor Says:
Teresa, I have told your Mom, Karen, over and over how much I admire your strentgh!!! You contantly amaze me with all you have been through since Samuel’s accident. I am so horored to know such a strong women as you are. You are an inspiration to all of us. We do keep you in our thoughts and prayers and always will and that goes for your entire family!
We Love You & Tom and your sweet army of boys!!!
Love Ya Always, Our prayers are with you!!!
Larry and Cindy Taylor