Archive for October, 2005
October 15, 2005
October 15, 2005 | Updates
Posted some new pictures in the photo gallery. They’re pretty cute!Love,
Teresa, Tom & Boys
October 13, 2005
October 13, 2005 | Updates
Just a quick update. I have found a doctor in Salt Lake that is willing to do hyperbaric treatments on Samuel. I just want to ease anyone’s mind that might think hyperbaric is an “experimental” thing. It is not. It is approved by the FDA for things like carbon monoxide poisoning, severe burns, poor circulation to limbs and other problems. But it is not approved for the treatment of brain injury simply because there have not been enough studies to show that it helps improve brain function. But there is so much evidence that it may have benefits that many hospitals, including LDS hospital, are currently doing studies to see if it does benefit those with brain injuries.Anyhoo, this doctor is in South Salt Lake and we are hoping to go down there within the next few weeks. Samuel will need one treatment a day, five days a week for 8 weeks. Because he is so adverse to riding in a car, I will probably take him down on Mondays and back on Fridays. I’m wondering if I have any family or friends close to that location that would even dare to put us up at nights during the weeks. (We have a lot of baggage that comes with us!) I am also going to call the Ronald McDonald house and see if they would consider taking us again. But, I would still be interested in a list of people close to that location who might be willing to stop by the Ronald McDonald house once a day for about 1/2 an hour or so to help with Samuel’s therapies. (We could obviously rotate people, so one person wouldn’t have to come every day.) There are a few things in his therapies that take 2 people to implement.
I’m just thinking out loud here and can’t tell you exactly what we’ll decide to do in the end. But this will help me know our options better. So if we end up not needing to stay with anyone or not needing volunteers, no getting offended, OK? 
Again, I’m just trying to figure out what might or might not work out. You can email me at thejewkes@comcast.net. Again, don’t be upset if I don’t email you back. I get your emails and am so greatful for them and would love to get back to everyone. But, we just have a lot going on right now. (I guess you all know that, huh?)
Thanks everybody, for being so willing to help out. It makes things better just knowing everyone cares so much. Keep up the prayers! Samuel’s posturing is getting better little by little each day. And we know it is because of all your prayers and faith!
Love,
Teresa, Tom, Samuel & Boys
October 9, 2005
October 9, 2005 | Updates
Time for another update. Samuel had a pretty good week this week. He seems to be calm more often and he is definitely moving his arms more and more. He is even beginning to move them out away from his body which will give him a much better opportunity to grab at things in the future.We did go down to the NACD this week and had an interesting appointment there. We could not get Samuel to wake up for the appointment. In fact, we tried our best for the first 45 minutes of it. Then the founder of the academy came over and tried for about 5 minutes and got Samuel wide awake so he could assess him. We should receive instructions for his home therapy program sometime this week. It will be a pretty intense program, and we will probably need to ask for volunteers in the near future who would be willing to help out with the therapies. (Especially because our insurance has discontinued nearly all of the therapies they were sending for Samuel and this home program will be pretty much all he is getting.) We’ll let everyone know.
We also discussed with the NACD trying to get Samuel off as many of his medications as we can. He is still on so many that it would be difficult for his mind to function even if he didn’t have any damage to it. So we will be working on that over the next few months and see how clear we can get his head for him.
This morning, Samuel woke up with a cold. It hasn’t been too bad so far, and we hope it doesn’t get any worse. He will be more apt to get colds, RSV and pneumonia this year, so we are trying to make sure he isn’t around anyone who is sick. But this time of year, that’s a difficult thing to do.
We are also looking into getting Hyperbaric Oxygen Treatments for Samuel. Our insurance won’t pay for them, but they have helped near drowning victims in the past and we want to try it as soon as possible.
Samuel is needing to be cathed less and less. I don’t ever cath him during the days anymore, just at night. And 2 nights ago, he went on his own. Hopefully, that trend will increase.
Otherwise, all seems to be going well, just slowly. His feedings are getting better and better and he doesn’t seem to have stomach aches or constipation very often anymore. He is tracking things very well. And we are beginning to see signs that he can hear us as well. We also are certain that the movement of his arms is purposeful. And we are seeing him turn his head to the left more and more often. As I said, it’s all slow improvements, but we’re glad to see them.
Thanks again to everyone that’s been so good to help us. Hopefully, some of the new things we’ll be trying will help Samuel to progress even faster.
Love,
The Jewkes
October 2, 2005
October 2, 2005 | Updates
This week has been a pretty hectic one. But before I update, I wanted to ask a favor. An EMT from Paradise stopped by a few days ago and told me that she rode into Logan with Samuel in the ambulance the night of the accident. I should have gotten her contact information, but didn’t. She said she had wanted to get ahold of me, but didn’t necessarily feel comfortable posting on the carepages. I’m wondering if when she reads this if she will email me at thejewkes@comcast.net. Also, if there are others of you who would like to contact us, but don’t feel comfortable doing it here, feel free to email us. I can’t promise to reply to all of you, but I would love to hear from you. Thanks.Onto the update…we went down to Primary Childrens on Wednesday and it made for a pretty long day. Just as I had figured, when we went for Samuel’s audiology appt, they told us there really is only one other test they can do for his hearing and he has to be sedated for that one. So that appt was a waste. I’m not quite sure why the discharge nurse scheduled it for Samuel. But, oh well. We did get his pump refilled and saw our doctor (Dr. Such-Niebar) and our physical and occupational therapists that worked with Samuel while we stayed down there.
Our doctor is phenomenal. I could be really good friends with her. We couldn’t get an appt with her at the same time as Samuel’s refill, so she said she would stop by on her lunch hour. She was with us for 45 minutes and I know she missed lunch altogether. And then when we scheduled for his next appt, we had the same problem and she said she would use her lunch hour again. Pretty neat! Everyone said Samuel looked even better than when we left. They said his eyes looked brighter and he was definitely tracking more. To show off, he peed right when we got to the doctor’s office and filled his diaper so full he got all his clothes wet and we had to totally redress him!
Everything went well except the getting there and back in the car seat. I gave him medication to put him to sleep both ways, but he only slept about 45 minutes each way and was pretty unhappy the rest of the way. I’m not really sure what to do to fix that.
Otherwise, we’re just busy with lots of therapy and the regular “routine” Samuel requires. He’s still not sleeping well at night and he does have to be cathed during the night. But he is happy for the most part during the days. He is still posturing about the same, but he does calm more and more when we rub him or move him. So I know he is getting more aware of his body. I am also working him onto gravity feeds. His feeds right now take way too long and I’m tired of him being attached to the feeding machine so much. So we are slowly working up to feeding him just 3 times a day for about 20 minutes each time. That’s the goal. We’re currently at 6 times a day - 15 minutes each. Which is much better than the past 3 times a day - 2 hours each!
This week we are headed to Ogden to visit the National Academy for Child Development. They will make up a home therapy routine for us that we can administer to Samuel in addition to his regular therapies. We’re pretty excited.
Samuel is having more and more of his “episodes” as he becomes more aware. But he is also biting his cheeks less and hardly ever bites his tongue anymore. Hopefully, it is just positive progression of his brain. I also think I may be seeing more and more myoclonic jerks. But I’ll keep watching and talk to the doctor if I decide I’m right.
Last of all, we have now been faced with new insurance issues. Our health insurance is denying most of Samuel’s claims for reasons I won’t go into. But it’s frustrating and looking like we’re going to have to hire legal help to push things through. Just one more thing to add to the pile, I guess. Hopefully, it won’t turn into anything too huge.
Thanks to everyone who continues to help us out! You’re lifesavers!
Love,
The Jewkes
