Archive for January, 2007
January 28, 2007
January 28, 2007 | Updates
Well, this week was much less exciting than last week. Yeah! Tom and I spent Monday taking Samuel down to Salt Lake for the pump reduction appointment we missed on Friday. It was funny because I told Tom that we always have the same conversation with each nurse that does the reduction. It always goes like this:Nurse: So you’re here for an increase?Me: No, a reduction.
Nurse: Oh, a reduction? Why?
Me: Because we don’t believe Samuel needs as much medication as he’s getting. He’s too loose and decreasing the doseage has been increasing his abilities.
Nurse: That’s strange. Normally, increasing the dose increases abilities. So how far down are we going.
Me: 75 micrograms.
Nurse: 75?! Have you spoken to his doctor about this?
Me: Yes, and we’ve been going down that much at each appointment for months.
Nurse (as she flips through his chart): Oh, yea, it looks like you have. OK, but I have to check his tone first. (as she checks his tone) Wow! Wow! We never see kids like this. He certainly doesn’t need as much as he’s getting. Let’s do the decrease.
Tom was silently laughing as he watched the exchange at the doctors office just like I had told him it would be. The only difference was this time we put in his chart that we’d like to get the doseage down to zero and remove the pump at some point. We are now down to about 475 micrograms a day (down from 1500 originally) and are seeing no bad side effects. Another 6 months and we should be to zero and then we’ll leave the pump in for 6 months or so just to make sure Samuel doesn’t need it. If we conclude he doesn’t, it will come out. I can hardly wait!
We also spent part of the day looking for a new Suburban and by Tuesday, Tom had one picked out and bought. It was almost like it was supposed to happen because the loan flew right through the bank. It usually takes us longer than most to get a loan because we are self employed and have to prove our income, but not this time. I don’t think we’ve even gotten a loan so easily. So I guess we were meant to get a different car. Who knows why? Maybe the old one just wasn’t safe anymore after all it had been through. Only God knows why.
Samuel woke up sick on Tuesday, which is always a bit scary. He had a low grade fever and a congested cough. The fever hung on for about 3 days and the cough is still lingering. But all things considered, he faired very well through it. He usually throws up a lot when he has a cough, but he only threw up once. And he did a good job at coughing and clearing his throat as it needed it. He even slept well through it all. So, I can’t complain.
The week was pretty slow. We cancel all therapy and Samuel didn’t go to school. We just hung around at home and relaxed. Samuel has been struggling a bit with the pump medication reduction as he always does for a week or two. But we are supplementing him with some oral medication to keep him calm and help ease the withdrawals. It just seems wrong for a 3 year old to have to suffer from medication withdrawals, but Samuel has suffered from that more than anyone I know. He’s also the toughest person I have ever known. He amazes me daily!
We got new padding to cover all the bars on Samuel’s crib so he can’t possibly get his legs through the bars and bruise them up anymore. It’s turned out to be more of a blessing than I thought because now I can put him in bed at night and let him watch a short video and he’ll usually fall asleep. That never worked before because he would just get himself tangled in the bars and never relax enough to fall asleep. So that’s been nice for both of us.
We have a few appointments this week, one with the NACD to redo Samuel’s home therapy program. Hopefully, they can give me good ideas on getting Samuel to use his arms when crawling. Otherwise, nothing much new on the horizon.
I read a marvelous story in the Church News sent to me by Tom’s aunt. (Thanks Aunt Judy!) It was about an 11 year old boy who contracted a mysterious illness and fell into a coma 2 years ago. He suffered brain damage and showed no signs of consciousness for 22 months and then one day began to wake up. Now, just a few months later, he is nearly fully recovered. When this little boy first got sick and his family questioned why, their Relief Society president put it into perspective. She told them, “She thought he was on a two-year mission. He brought the community together. He brought the Church members together. When his two years were over, he woke up.” What a wonderful story! I just wanted to share it with you all.Thank you for all your prayers. Please continue to pray for our little Samuel. We have not lost the feeling that he will someday be well and whole again in this life. Some may feel sorry for us as parents hanging onto something that is simply “impossible”. But it is not just our desire, it is a feeling of peace that we receive when we pray for our little boy. We believe it will happen. If it does not, then it will be a flaw in our perception of the things we are feeling – not a flaw in God’s plan. He will do what is best for us and our little guy and we will be happy either way. But we have not lost our faith and hope that you have not lost yours. We still need your prayers as fervently as ever.Love,
The Jewkes
P.S. I am trying to find someone who will help me build an actual website just for Samuel. We need to raise more funds for treatments that are not covered by insurance and we believe a website may be the most effective way to accomplish that. If anyone knows of someone who might be willing to donate some time towards such a website, would you please let me know. Thanks!
January 21, 2007
January 21, 2007 | Updates
Yup, we’re still here! Sorry for the lack of an update last week. Things have been busy around here as we play a little “catch up” from Christmas vacation.We have hired a new girl to help out around the house with cleaning and meals and Kaylee is back doing therapy with Samuel each day. We are keeping up with Samuel’s school, physical therapy and chiropractic appointments also. I have also decided to move Samuel’s occupational and speech therapy to another provider and will be working on that this week. Our speech therapist has been good to work with over the last 18 months, but when I spoke with her the other day, she felt she wasn’t really contributing much to Samuel’s improvement. She felt that I was more effective with him than she is and that our home therapy was helping him more than she was. I agreed with her and we decided to stop speech therapy with her for a while. Although I have enjoyed working with her, I do think it is time for a change. We could use some new ideas on how to get Samuel eating and talking, so we will switch to a local kids outpatient therapy place that I have heard is really great. They also have an occupational therapist that I like there, so we will start that therapy again also .We will stay with our current physical therapist, however, since I like him and so does Samuel and he is always thinking of new things to try with Samuel as Samuel changes and improves.
We are seeing improvements in Samuel’s abilities to eat and crawl already. Granted, some days it seems like it’s taking forever. But on the other hand, we have only really been pushing this for about a month. Yesterday, Samuel ate more baby food in one sitting than I have seen him eat since before his accident. He ate about 1/2 a small jar. Not much for most kids, but huge for him.
And on the crawling front, he is making great progress with his legs. As soon as I roll him on his stomach and put my hands on the bottom of his feet, he starts pushing himself forward. He will bend one leg up and then push it against my hand while bending the other leg up and so on. When we began this just a month ago, we had to tickle one foot at a time to get him to bend his legs. Now he’s doing that on his own. He is also trying more to pull his legs up under him while he moving across the floor. But he still had no idea what to do with his arms and he is not as happy to let us try and teach him to crawl as he was to begin with. I think he is tired of it and gets frustrated more easily, but I’m hoping that will pass because we still have a long way to go.
Samuel has also been more upset than usual for the past few weeks. At first I thought he must be getting sick, but he never did. Then we saw two large seizures within 3 days of each other. And then I determined that most of the trouble he was having was due to lack of sleep. I think I have come to the conclusion that he is not sleeping well at night because his seizures have increased and are waking him often during the night.
I spoke with his neurologist and he had me increase his dose of Keppra, but after doing so, I actually think his seizures are worse. I’ve combated the difficulty sleeping by giving him ambien every night, but I don’t want to do that forever. So I will be speaking to his neurologist again on Monday to determine what to do next. They may do an EEG and they may switch Samuel over to Depakote (Valproate Acid) instead of the Keppra. I am going to see what the risks would be to simply take him completely off the Keppra and see how he is. I actually think the Keppra may be making the seizures worse, but don’t want to risk a grand maul seizure either. So we’ll see what the doctor has to say.
We had Samuel scheduled to have his pump reduced this past Friday, but never made it to the appointment. I’d almost rather keep this story to myself as even I am getting nervous to be part of my life J. I would dare say that in the last 2 years, we have not had the kind of luck that most of you would envy. I do believe that everything happens for a reason, so I wouldn’t call it “bad” luck. But it is definitely “inconvenient” luck! So, for the enjoyment of all…here’s the story. We had an appointment Friday at about 2 pm in Salt Lake for a pump reduction. Around noon, I realized we would not make the appointment as I was still trying to finish up payroll for Tom’s business. So I call the doctor and they changed our appointment to 3:30 pm. I knew it would still be hard to make, but we could do it. So I finished up payroll and threw everything in the Suburban (that we just got back from being fixed after it was rear-ended in December). As I went to put Nathan in the car, Tanner walked in the door – home from school early since it was a Friday. I asked him if I could leave Nathan for the next 6 hours and unlike him or any other teenager, he said yes with no complaints. I thought that was strange, but took him up on it and headed out the door with Samuel.I quickly stopped for gas, but only filled the tank with 10 gallons because we were late. A while after we passed Ogden, we hit construction and the lanes were tight and there was a lot of construction. At one point, there was a highway patrol car on the side of the road and suddenly I saw a large cardboard box in the middle of my lane. The cars to the right had pushed it into my lane as they sped by. Because of the tight lanes and construction, I could not go around the box, and barely had time to hit my brakes at all. So I had to drive over it. But I felt it go under the car and under my back tires, so I didn’t think much of it.
A few exits later, a woman drove up beside me in her car and rolled down her window. I rolled my window down and she said there was something stuck under my car. I thought, “Oh, great, part of that stupid box must still be under there.” Then she said, “It’s on fire.” Well, that got my blood pumping! I was right at an exit, so I pulled off the freeway, turned off the car, left the keys in the ignition and jumped out. I looked under the suburban and sure enough, part of that box was on fire. I reach under the car and grabbed a small portion that wasn’t burning and pulled, but it was totally stuck and the flames were large. So I opened Samuel’s door, grabbed the poor sleeping kid out of his cars eat and ran away from the car while dialing 911 on my cell phone.
As I reported the problem, a highway patrolman pulled up behind me. He asked me if anyone else was in the car and I said no, but there was a $7,000 wheelchair in the back and I sure would appreciate it if he would save that. So he ran up to the suburban, flipped open the back, and grabbed the wheelchair. Then he grabbed his fire extinguisher and attempted to put out the fire, but could not. So, we waited for the fire truck while I sat in the cop car with Samuel and watched the suburban burn.
In the end, they had quite a time getting the fire out. I guess the gas tank leaked and they had to wait for the gas to burn out. They were able to get most of our belongings out after they put out the fire. But even after several washings, they smell horribly of burning plastic. The undercarriage of the car was ruined along with the entire engine and the fire even entered the interior of the car through the driver’s side dashboard. The paint was ruined and the sidesteps melted. It’s probably a total loss. Thank goodness we pulled out the wheelchair or it would forever smell of smoke. And thank goodness we have comprehensive coverage since collision wouldn’t cover this damage at all. Samuel was not happy about the whole thing since I grabbed him out of his seat while he was asleep and pulled him out into the cold without a blanket, coat or shoes. He then had his regular bout of seizures as he woke up and then he was in a strange cop car and another 2 hours at a Carl’s Jr while we waited for Tom to come and get us. Our saving grace was a little 2-year-old girl at Carl’s Jr playing while her mom worked there. She sat and played with Samuel and entertained him for a good hour, which calmed him down greatly. It was fun being with her because she reminded me so much of Samuel before his accident. She was definitely a blessing. And surprisingly enough, some of the fire department and EMT’s knew us because they live in Cache Valley. Small world, huh?As the policemen left, they asked me how I was. I was surprised at how rattled I WASN’T. I said I felt fine and that worse things had happened before. But after they left, I suddenly realized that I very easily could have had Nathan with me and I didn’t know how I would have gotten them both out of the car by myself (and no one had stopped to help). At that moment, I felt like throwing up or crying. I’m not sure what I’m meant to learn from all this. Over the past 2 years, Tom and I have been rear-ended, Samuel nearly drowned, Nathan was born prematurely, Samuel and Kaylee were rear-ended and now our car caught on fire. It seems like God is trying to remind me how fragile life is. I hope he knows that I already know that. And I hope I’m learning all that I should from this stuff because I certainly don’t want anymore “inconvenient” luck than is necessary J. But God knows what he’s doing, and we’re just along for the ride. I just wish he knew that I like the carousel much more than the roller coaster!Until next week…keep praying that Samuel will learn to eat and crawl – and that we’ll get a new car quickly so we can make all our appointments like we need to.
Love,
The Jewkes
P.S. We’re still watching Tori at www.pray4tori.com very closely on her trip to China for stem cell transfusions. Her trip has been very exciting and we may be following her if her parents see improvement in her. Keep her in your prayers also. Thanks!
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
