January 9, 2007
January 9, 2007 | Updates
Happy New Year! We’re 9 days in and plugging right along with our New Year’s goals - to teach Samuel to eat and crawl. Once we reach those, we’ll move onto walking and talking, but first things first, right?Things have been busy as always. We rearranged Samuel’s room to fit some more things in so we can eventually move Nathan out of our bedroom. At 7 months old, it’s time Nathan moves out :)! And with all of Samuel’s equipment and him needing his own room, we are suddenly a little cramped for space. Seems funny, I know, seeing as how we just moved 18 months ago from a home that was 1200 square feet. But when you have a slide the size of a bed and a dresser full of medical supplies and a stander, a walker, a crawler, 3 wheelchairs, a feeding pump, a concentrator, oxygen tanks, therapy balls, cases of pediatric compleat and a swing for Samuel, you begin to feel a bit cramped. We also spent a lot of time redoing Samuel’s home therapy schedule and getting the needed therapy tools for it. Now we are just looking for some replacement help at home so we can get back into the swing of thing since school and work are back on track.
Samuel is doing great at learning to eat and crawl. He is taking 5 bites of food at each meal. I don’t let him stop until he’s eaten the required amount and we’ll increase that amount each week until we’re at the point we want to be. He is handling the food fine, just doesn’t like the initial feel of it in his mouth. So we are also doing lots of oral motor stimulation to help with the aversion.
As far as crawling goes, we’re really working on getting him to bend his legs up - right, then left, then right and so on. He is getting much better at bending his legs and them pushing himself forward with them. We do have to help him put his feet on the floor, and he doesn’t have a very good feel of what to do with his arms, but we are working on that also.
I was watching a video tape of us doing therapy with him about a year ago and was amazed by it. He didn’t bend his arms or legs (scissor legs is what he had) and his head was stuck to the right. He didn’t respond to us much or make much noise and he didn’t tolerate much of anything well. There are exercises we gave up on back then because they were simply impossible to do with him and he would scream if we even tried that we are now doing without difficulty. WOW - how thankful we are for that progress!
We’re still doing school and physical and speech therapy. I’ve sort of taken a break from occupational therapy because I don’t have a therapist for that that I like. But I need to get that back online also. We’re also seeing the chiropractor and that seems to have helped Samuel’s back and given him a little more trunk control. Otherwise, not much to report. There are things possibly on the horizon, but I have to make some decisions on what therapies I want to pursue. They are all time consuming and costly. I am looking into about 5 different therapies, but don’t want to commit to them until I’m sure they are worth the time and money. It will take a lot of thought and prayer to make the decision.
In the meantime, we are excited for one of our friends who we met at Primary Children’s right after Samuel’s accident. She is a 16 year old girl who nearly drowned exactly 1 month before Samuel’s accident. She was in the water approximately the same amount of time as Samuel and is similar to Samuel in many ways. She and her family live in Orem and are headed to China tomorrow for a month for stem cell injections in hopes of improving her function. The stem cells she will receive are from the umbilical cords of full term babies, so there are no ethical issues there.
We will be watching her closely and praying that she and her family see good results from the treatment. Stem cells are the best hope we have for replacing dead brain cells. They can transform into many types of cells, including brain cells. The research on stem cells has been slowed by ethical issues, but there are now several resources of stem cells that have been discovered that do not pose ethical problems. These include bone marrow, cord blood and now amniotic fluid. I am hoping these new discoveries will help speed up the research process and lessen the debates. It is because of the current research that I paid to have the cells in Nathan’s cord blood stored when he was born in hopes that some day we can use them to help heal Samuel’s brain. Anyway, there currently are very, very few trials using stem cells to heal brain damage in the United States (like 2 total), so many people are heading out of the country to receive this type of treatment.I am not sure what our future holds as far as stem cells are concerned. I have tried to find a facility in the U.S. that will transplant Nathan’s stem cells into Samuel, but have been unable to find one. It is hard to sit and wait for the U.S. to do all the research necessary to begin using stem cells to treat brain injury as that could be 10, 20 or even 50 years away. But going to China is definitely a huge undertaking and a risk in many ways, so we have not made that decision just yet. In addition, the cost is huge, so the money would have to be raised for the trip and that would be quite an undertaking in and of itself.
That being said, take a minute to visit Tori’s site and watch the updates her father posts. She is paving the way for many that may follow and they are much braver than I am to be going at this time. Keep them in your prayers. We hope for their sake and ours that they see tremendous improvement in Tori over the next 6 months or so. Their website is www.pray4tori.com.
Thanks and as always, keep our little Samuel in your prayers.
Love,
The Jewkes
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