Archive for July, 2007
Two years post accident and still kicking (literally)!!!
July 25, 2007 | Updates
The past 10 days have been a whirlwind. It’s crazy to think how much can happen in just 10 days. Of course, we celebrated Samuel’s birthday. Samuel started the day with preschool and then came home for a nap. Later that afternoon, we took him to see Ratatouille. He seemed to really enjoy it and didn’t move a muscle through the whole movie. That night, we had a little family get-together with ice cream, cake and presents. It all went really well except that Samuel seemed so tired and sleepy. But he did seem to enjoy himself and now he is an AMAZING 4 years old. I really can’t believe it.
I think the IEP just confirmed my worries. All of his therapists and teachers said the same thing. Something is just not the same with Samuel. He has fallen back on all of his goals. He doesn’t seem interested in things or nearly as responsive. He is just lethargic and tired all the time. It was hard to hear, but it needed to be said. I think I just kept telling myself that it was just me worrying and that it was really nothing. But to have everyone else voice the same concerns, I knew I needed to do something.
The next day, I spent the day on the phone making doctor appointments. I made one to have Samuel’s eyes checked because he didn’t seem to be tracking as well as usual and his eyes were watering a lot and it seemed impossible for him to open them in the sunlight. I also made an appointment to have his pediatrician check him and, hopefully, do some blood work to see if anything unusual showed up. And, I put in a call to his neurologist.
The next day, the eye appointment showed that all looked well with his eyes, which was good, but confusing. The blood work showed that all looked good there also, which was good, but even more confusing. And lo and behold, his neurologist called me right back and spent a good 20 minutes on the phone with me. We discussed the fact that the neurontin probably isn’t helping his seizures at all, so we decided to get rid of it (slowly). We also discussed that we can go up on his Keppra and decided to do that also. And then we discussed getting a 24 hour EEG if those two ideas don’t work so that we have a better idea of exactly what is going on seizure wise. So, we decided to wait the weekend and try these few changes and see what came of them.
Then I spent about 3 hours analyzing Samuel’s diet. He used to be on pediatric compleat. Now, I make his food, mostly from goat’s milk. I had been very careful when I came up with this new diet to ensure he was getting enough fat, calories, fluid and protein each day. But this time, I analyzed every last detail of his diet to make sure he wasn’t missing anything that he had been getting on the pediatric compleat. And what I found was that he wasn’t getting as much iron and as many carbohydrates. So, I tried just giving him some pediatric compleat a few times a day. But he started spitting up a tremendous amount of food again and I’m not ready to go back to that nightmare just yet. So, I started adding a few more things to the diet I make him. I also started feeding him pediatric compleat overnight because he seems to tolerate that well. And I started giving him a liquid vitamin each day.
Well, I started all that on Friday and by Sunday, he seemed so much better. And on Monday, his teacher was excited because, “Samuel was back!” And boy, oh, boy, is he back! He is wiggly and smiley and, well, I call him my little “crazy man” because he just NEVER holds still! Sometimes - actually a lot of the time - it is frustrating to have him be so wiggly. But it is much worse to have him be lethargic. So, we are glad to have our wiggly, determined, crazy man back in the house! And I am so glad he is feeling better. It is so strange what a difference small things (that don’t show up in blood work) can make. My only hope is that he settles down just a bit. Hopefully, he is making up for lost time. But actually, I think the change in medications takes him a little while to get used to and he will calm down a bit in a week or so.
So, that’s about it. I didn’t even realize it was July 19th (the 2 year mark of Samuel’s accident) until about 3 pm that day when we were sitting at the eye doctor’s. I started to get teary eyed when I realized it, but pushed the tears back and by the time we left, I had forgotten. I don’t think I thought of it again that day. (Thank heavens my memory is so bad!) So, the day didn’t turn out to be too emotional.
Also, we FINALLY got all the info in and the approval for his bath chair. Sadly enough, I put off giving him a bath sometimes because it is such an impossible chore. He wiggles so much, I can barely keep him from drowning. So I am pretty excited for the chair. We also have a prescription for new leg and foot braces so we can get a walker - FINALLY! Otherwise, we’re just enjoying the summer. Tomorrow is the last day of summer school so the next few weeks will be interesting. But I think we’ll have a good time!
And here are the pictures from our reunion. The first one is Samuel & mom running the sack race and the second one is Samuel and dad watching the kids play on the slippery slide. It was lots of fun.
Keep praying!
Love,
The Jewkes
A new neurologist and a fun surprise!
July 15, 2007 | Updates
This past week we had an appointment with Samuel’s new neurologist. I liked him. But the real test will come when I have a problem and need to get ahold of him. If he calls me back quick, he will be my new best friend. If not, we will be in the same boat as before we switched neurologists. Let’s hope for the first one!
The neurologist spent over an hour with us. He went through all of Samuel’s CT scans, MRI’s and EEG’s since the accident. The original MRI (a few days after the accident) showed a lot of swelling in the basil ganglia portion of his brain indicating that there should be some brain loss and damage there. The later MRI (about 8 months after the accident) doesn’t really show any damage. There is some indication that there has been a SLIGHT loss of brain mass and a SLIGHT increase in the size of the ventricles in the brain, but it is all very slight and hard to see. The neurologist tried explaining to me how that could possibly be when clinically, Samuel appears to have such severe brain damage. I nicely cut him off and told him how I explain it to others. I tell them that with an anoxic brain injury, it’s like you went into the brain and just stole a few cells here and there all over the place. It’s not enough in one specific place to show extensive damage. But it’s enough to break all the connections between the brain cells and make it very difficult for them to reconnect again. He seemed satisfied that I understood it and a little relieved that he didn’t have to break the bad news to me. But none of it was new news. I had heard it all before.
The new news we did receive though, concerned his last EEG in February. His original EEG, taken just a month after the accident did not show any signs of seizure activity. But it also showed slowed brain waves. The new EEG taken a few months ago shows that Samuel’s brain waves are often in normal range. That is very good news. And leads us to believe that he is very aware of all that is going on around him. But the bad news is there are signs of possible seizure activity throughout his brain. There are many spikes occuring throughout his brain that can and obviously do cause him seizures. BUT, the doctor also does not believe that the small startle seizures that Samuel normally has are hurting him. That is very good news. We discussed some new things to try with his medications and decided that as long as Samuel isn’t having more involved seizures, we won’t worry too much about trying to prevent the minor ones. Apparently, the startle seizures are very hard to control and would most likely require us to sedate Samuel to the point that he simply would never be startled. That is not a good trade off considering we seem to be able to control them fairly well as long as he gets enough rest and takes his current medication. So, we will try that for now and hope the futue only holds better things as far as the seizures go.
We were able to attend a family reunion over the weekend and really enjoyed ourselves. Samuel seemed to enjoy all that went on. I think one of his favorite things was watching all of his cousins slip and slide down a huge hill. It is amazing how far he has come and how well he is able to do in large crowds for long periods of time. We literally spent 12 hours one day with about 200 people in a great big lodge and he did just fine. I am so thankful for that and the opportunity we have to take him with us everywhere we go and let him enjoy as much as he can! I took a lot of pictures there and will post some later. Samuel did, unfortunately, have 2 large seizures the day before the reunion. I was not happy about that. So, I have put a baby camera in his room to allow me to monitor him more closely at night because I believe he may be having more seizures than I thought, but they are occuring in the early morning hours when I am not with him. So, we will see.
The other fun thing this week was a surprise gift Samuel received in the mail. You’ll notice that I removed the Jenn Swing from Samuel’s wish list. That is because a wonderful woman who works with my mom purchased one for Samuel. And we have already found it to be one of the best things ever purchased for him. He LOVES to sit in it outside and slowly swing back and forth. He was literally out in our backyard today in the new swing for hours! And he was perfectly content. The only other place he seems to be that content for that long is in his bed watching a movie. But any mom will agree that I would much rather have my kids outside enjoying the fresh air than inside watching TV! So, thank you, Kelli! We will probably get more use out of the swing than we’ll ever get out of his wheelchair because he loves it so much! We are so grateful for those around us who love our little guy like we do. And there are so many of you! Thank you!
To see Samuel laughing in the new swing, click the link below. It’s hard to hear him because Tom is teasing him and making him giggle. But you can hear him if you listen close in the first 30 seconds or so.
So, that’s about it for this week. I’ve had a lot on my mind lately as the next few days hold a lot of memories for us. Samuel’s birthday will be here on Tuesday and the 2-year anniversary of his accident will hit on Thursday. We are so blessed and have so much to be thankful for, but those are still hard days for me. I don’t know if that will ever change. I was telling Tom the other day that I avoid old videos or pictures because they are just too hard for me to see. He told me that was silly and that I just need to face them so I can get over it. But I tried that and it is just too hard. I love the little boy we have now and I see so much potential in him. I hate looking back and just want to look forward. I guess that’s why this week will be hard because it won’t really matter how hard I try, those memories will come back. So please pray that we can focus on all the good in our lives and the miracle that Samuel is and stay focused on the road ahead this week!
Keep praying!
Love,
The Jewkes
Missing in action…
July 5, 2007 | Updates
Wow, is your summer as crazy as ours has been? We’re all doing well, just constantly on the go. After our trip to Washington, we came back to a lot of work and a lot of doctor appointments. The first day back, I took Samuel to his 4-year checkup and Nathan to his 1-year checkup. They both had to get shots and Nathan measured on the charts as tall and skinny while Samuel came out in the 15 percentile for both height and weight. Nathan cried through his shots. Samuel just got a little mad. And the greatest thing was when the doctor checked Samuel’s hips and joints, just like he does with every little kid. and he got this great surprised look on his face like he couldn’t believe Samuel didn’t have any problems there. I explained to him about hyperbarics and it only took a few minutes to convince him how much it has helped Samuel. That was pretty fun!
A few days later, we went to Salt Lake for another pump decrease. We are now down to about 275 micrograms a day and I am getting excited as I can see in the future the day that we will be down to nothing at all. We also had an appointment with the spasticity team at Primary Children’s. They hadn’t seen Samuel since just before we left the hospital in October of 2005. They were impressed to say the least. They had discharged from the hospital a miserable, suffering little boy who seemed to have no chance at ever responding to us or enjoying life. The boy they met this time was smiling and sociable and comfortable and happy. They were amazed. They were also amazed at the reduction in the tone in his body. They measured each joint on a scale from 1 to 5 with 1 being low tone and no loss of range of motion and 5 being high tone and severe loss of range of motion. They began with his legs by measuring his ankes and knees and hips and adductors, etc. One therapist would measure while the other one would write down the results. The measuring therapist kept saying, “One, one, one, one…” They were so amazed to see no problems from tone in Samuel’s legs - especially because they remembered what he was like in the beginning.
Then they moved to his arms. This time they switched jobs and the new therapist began saying, “One, one, one…” Then she stopped and asked why the other lady wasn’t writing her findings down. That therapist said, “I already did. I can tell they’re all ones just by looking at him!” The first therapist laughed and said, “You don’t want to wait for my ‘official’ findings?!” It was cute and funny and I could tell they were a bit dumb founded.
In the end, they asked me if I could go back, would I put the baclofen pump in again. I told them I would because I think it was a good thing at the time. But that I only think that because it gave us time to let the hyperbaric treatments have a positive effect on him. I think the baclofen helped keep his range of motion while the hyperbaric treatments worked their magic on his brain. And now that hyperbarics has had such a profound effect on him, I’m looking to get rid of the pump. And when I was done, my rehab doctor turned around to face us and told us she agreed. She said she didn’t know what else they could have done for Samuel in the hospital at that time and that the pump bought him some time. But she also said that hyperbarics clearly made a huge difference for Samuel and had a very positive effect with him. WOW! Two doctors in one week who agreed with us. That’s why this site is entitled “Samuel’s Miracle” because he is a miracle in so many ways. And one thing he is doing is changing the mind set of some of his doctors so they are more tolerant of things out there that might not be “proven” but do work!
Otherwise, we’ve just been really busy. We have been moving our offices and our production line to new buildings and that has taken a ton of time for all of us. And we spent several days camping up Logan Canyon. Samuel, Nathan and I even slept up the canyon in our motor home for a few nights and it went pretty well. Samuel is attending summer school and having a good time there. I guess the thing we are doing the least of is therapy. But we are doing all that we can fit in and I guess I figure the rest of us take a bit of break in the summer, so why not him. We’re all just enjoying the nice warm weather and the chance to be out and about as much as we can. Samuel even enjoyed the fireworks with us last night on our back lawn. He liked the lights, but not the noise so much. He would close his eyes whenever they were too loud. It was pretty cute!
I sure am blessed to have such beautiful boys! Hope everyone is having a fun summer, too! Keep praying.
Love,
The Jewkes
