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!
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