Archive for the 'Updates' Category
The Power Chair…
July 13, 2012 | Stuff We've Tried, Updates
You all probably think we’ve fallen off the map. Sometimes, I think that would be nice :). But we’re still hanging in there.
We haven’t given up on our monthly trials of “new” stuff. In June, we started Trial #3 - Integrated Listening Systems. I have a whole post written up about it and will post it soon.
But for today, I want to talk quickly about July - or more specifically about today. Today, I took Samuel up to the local university and let him try out a power wheelchair. The setup in the chair wasn’t great for him. I had to hold his head in the headrest because it wasn’t a great style for him. And he was strapped in all slouchy. But that didn’t matter. His right arm went for the joy stick right away. And he hit it over and over and over again. You could tell he knew what it was and you could tell he wanted to work it. But it was hard for him to hit and then hold the joy stick down to keep the movement going. We talked with the specialist there about getting another chair ready with better seating and controls he could work with his head or chin. We’ll go back in a week or so and try that out. I think it will be great.
But today, I was just so thrilled to watch him engage with something that could be so powerful in his life - controlling his own movement. And the smile on his face was priceless. It was awesome! And the best part? When he was done, we put him back in his regular chair and let Nathan have a try in the power chair. As soon as Nathan took off, Samuel burst out in laughter and couldn’t stop! He thought it was great and hillarious that Nathan could drive. Man, I love that kid!
I’ll get video and pictures next time we go. In the meantime, we’re working on borrowing an iPad to see if Samuel can use it as well. We also spent some time at the local hyperbarics facility seeing if we can negotiate a reasonable rate to do more dives.
Last, I want to leave you all with the few pictures I captured of Samuel at the annual stadium fireworks on the 4th of July. This was a HUGE fireworks show. And Samuel LOVED it! The noise didn’t bother him. The lights were fantastic and he watched them intently. The first picture is him smiling out of control. I couldn’t get one that wasn’t blurry because it was dark and Samuel just wouldn’t hold still. The next one is the best one I could get afterwards. He wouldn’t look at the camera until I switched it around and he could see himself and then…voila!
Enjoy! And we’ll be back soon with more!
Therapy Evaluation Updates…
June 13, 2012 | Stuff We've Tried, Updates
I wanted to update on our therapy evals. In essence, occupational therapy (OT) suggested that we meet with a group up at the local university to see about getting Samuel into a power wheelchair. The therapist thought that Samuel had the ability to drive one by controlling it with his head or with either hand. The head control didn’t surprise me. But I was surprised by the hand control idea. I have to say, though, that Samuel has gotten EXTREMELY efficient at grabbing his toothbrush from me every morning as I try to brush to his teeth. So, I think motivation is the key to arm/hand control for him :).
At our next OT appointment, we spent the hour letting Samuel try to access an iPad. I’ll write more about that later, but suffice it to say that I was EXTREMELY impressed at the responsiveness of the iPad and I want one for Samuel!
Our new speech therapist thought she could help reduce Samuel’s aversion to mouth stimuation. That is his biggest hang-up in eating. If he could get past that, then his swallow seems to be good. She also tried getting him to vocalize when he wanted something. Basically, she showed him the trailer to a movie and she would pause it every 20 seconds or so and have him vocalize if he wanted to continue. He caught on really quickly so we’ll be working on that at home. Again, motivation is key for him. Since our appointment about a month ago, Samuel has gotten very efficient in vocalizing when asked to. He can do it on command within about 5 seconds of asking. It’s awesome!
Physical therapy (PT) was a bit less effective. They can help us obtain new equipment as needed. But as far as helping in functionality with Samuel, I think they’re at a bit of an impass with him. Their job is normally to stretch and work on giving children the ability to move their limbs. Samuel is a mover and a shaker and has no need for stretching. That leaves the PT wondering what he can possibly do to help.
Three of us tried getting Samuel in his stander (at the same time). It didn’t happen. We discussed that he would need ankle braces to get his feet to stay in the right position and that those braces would just make him mad thus making getting him in the stander even harder. He has always hated the stander and the PT honestly didn’t see much of a point in using it with Samuel because Samuel moves so much that his muscles are strong and have fairly normal development which in turn keeps his bones developing and strong as well. I agree and hate the idea of a stander for him anyway.
We did try a walker. It didn’t work. You all missed the circus that was :). We’ll try another one next time. But for now, we’ll stick with Advanced Biomechanical Rehabilitation (ABR) for the physical therapy in Samuel’s life.
Speaking of, we just sent in a new evaluation video and I did some comparisons of Samuel’s sitting ability and the changes over the last 3 years. ABR is frustratingly slow. But, it is working where nothing else has for Samuel. As you watch the video, note the following things:
1. Samuel started out sitting on his tailbone when he attempted to sit (instead of his bottom). Now, he is sitting on his bottom (although it sometimes looks like he’s a bit on his tailbone because he is hunched over a bit, but that is deceiving). When he does sit up straight, it’s on his bottom. Yay!
2. Samuel used to spend all of his time arching. In the first video, you can’t see it, but I can assure you that I’m using all of my energy to keep him from pushing backwards. He can still arch, but doesn’t do it often. Instead, he pulls into a fetal position. This is the progression that Leonid (the founder of ABR) told us we would see. Eventually, the fetal positioning will subside as well.
3. Samuel used to drop his head back (or forward) and be unable to pull it back up. Now, although he still positions it back sometimes, he is in control of it and can put it back, pull it forward and catch it as it falls.
4. Notice the overall trunk strength change. Samuel has large folds of skin below his ribs in the initial videos and his ribs sink into his pelvic area if he bends to the side. Now, his trunk is long, straight and strong. It doesn’t fold in on itself as you turn him from side to side.
5. Samuel has more independent limb movement. He can move his head without engaging his entire body. He can move his legs without upsetting his head every time. This is huge for him because until he can move his arms independently of the rest of his body, he really has no chance for function.
Again, ABR is painstakingly slow. But, it’s working. The PT at Samuel’s school this year didn’t work with him last year. When she showed up this year, she told me she was “blown away” at the progress he had made in head and trunk control since she’d seen him last. She told me she thought I was nuts when I started ABR (which I knew), but that it was clearly working for him. Yay again! Validation is always nice!
Neoprinol we took a few weeks of a break from because Samuel was SO wiggly on it. I think that brain change in Samuel would probably manifest in wiggliness, though, so we’ll keep trying it.
I have a lot more to post, but that’s all for today!
VIDEO PASSWORD IS abr. To view it larger, click here.
Update on the Neprinol
March 26, 2012 | Stuff We've Tried, Updates
Well, we’ve gone a week on the Neprinol. We worked up quickly from 1/2 a dose once a day to two full doses twice a day without any adverse side effects. I was mostly worried it would cause upset stomach and more vomiting for Samuel, but it hasn’t. Samuel’s been on a pretty good streak of not throwing up very often and that continued this week with him only throwing up once.
Can I see any changes yet? Actually, I think I can. It could just be a phase Samuel’s going through since he seems to do that on and off. But this past week, he was so wiggly (which isn’t out of character for him), but he was also so vocal. He does have times where he’s very vocal, but the vocality this week has been in response to things that he likes. We went to a violin concert for my son and I had to take Samuel out of the concert because he was making so much noise in response to the music. And today in church, I tried to show him a book (which I’ve done before in that setting) and I had to put it away after just a few pages because he was getting so vocally excited about it.
It could be just a phase, like I said, but it could be the Neprinol. It sort of reminds me of when I used to use ambien to get Samuel to sleep at nights. He was just more “on” after he’d taken the ambien and until he fell asleep a short while later. The Neprinol isn’t NEARLY as strong of a reaction, though (thank heavens). It’s just been a small increase in energy and vocality each day over the last week and we’re taking the weekend off from it. When we tried the ambien, the effects were so strong that it just wasn’t managable. The Neprinol, so far, is managable.
We’ll try it for at least a month and then decide where to go from there. But so far, I think the Neprinol is something we will hang onto for awhile.
Now, just to make this post a little fun…
Here’s a video of Samuel watching part of the preview stuff to “Finding Nemo”. He thinks the cow mooing is pretty stinkin’ funny!
PASSWORD IS: cow
Trial #1 - March - Neprinol
March 19, 2012 | Stuff We've Tried, Updates
Neprinol is our trial for March.
I’m trying it because it contains serrapeptase, which was recommended to me by my friend Erin. When she tried it with her brain-injured son, Colby, she saw some good results.
Serrapeptase is present in the silkworm intestine and allows the emerging moth to dissolve its cocoon. The claim is that this makes it perfect for digesting dead skin making it helpful for removing scar tissue, cycsts, blood clots, arterial plaque and to allow for more fluid and natural blood flow through the body.
I have no idea if it actually works. But…Samuel has a lot of scar tissue in his abdomen from the uncountable number of stitches used to repair his muscle wall after the baclofen pump erroded through it. He also has a large scar on his abdomen and one on his spine from that same surgery. It would be great if those disappeared to some extent.
But imagine the effect it could have on lesions in the brain? When brain cells die, they bleed into surrounding brain cells and cause them to become inactive. It is this process that causes the brain injury to worsen 3-4 days AFTER the initial injury. Samuel laughed, spoke, rolled over and got up on his hands and knees just 12-24 hours after his accident. We thought we were home free…because we didn’t understand the cascade effect that the dead brain cells in his brain would have on the surrounding ones.
I don’t expect that serrapeptase will clean all that up. But I’d take it cleaning up just a little bit. That’s one of the things that Hyperbaric Treatments (HBOT) do and those treatments helped Samuel more than anything else we’ve tried. There isn’t definite evidence that the enzymes can pass the blood/brain barrier, but they are having some success with Alzheimer’s patience, so it is very possible that they do.
I spent a lot of time corresponding by email with the CFO of the company and although he couldn’t specifically direct me in how to use the Neprinol with Samuel and, of course, advised me to consult with a doctor before administering it, he did give me some suggestions…
- start with 1/2 a tablet and slowly increase to up to 2 tablets per day
- open the capsules and mix with water to administer through the feeding tube
- give an hour before or 2 hours after meals, if possible, to decrease stomach acids at the time of administration and, therefore, increase the amount of enzymes that actually make it past the stomach and into the blood stream
We’ll try it for a month (as long as it doesn’t cause any adverse side effects) and decide if we want to continue from there. I’ve also photographed Samuel’s scars before starting to see if there is a noticeable difference in them while on the Neprinol. I gave him the first dose today.
Let’s hope we see something good :).
Scar on abdomen - 4″ long.
Scar on back - 2.5″ long.
March 9, 2012 | Updates
Let’s see, it’s been like, oh, I don’t know…FOUR MONTHS since I posted last. Sorry. And that’s all the apologizing you get :). Life is busy, what can I say.
I decided in January that my one New Year’s resolution would be to NOT post on this site weekly. I figured I needed a resolution I could keep :).
But, now it’s March and I’ve decided that I need to DO some things. You know, some of the things on my huge list of things to try with Samuel. Oh, you didn’t know I had a huge list? Well, I do. And honestly, I feel guilty about it constantly. And at the same time, I realize that I can’t spend my life trying to “fix” Samuel because, well, there’s the whole ”actually living” thing about life that seems pretty important, too. Even Samuel likes that part of life much, much better than constant therapy.
And if you want to know the real truth, everytime I think about “fixing” Samuel, it makes me cringe. Out of all of us, he’s the one who needs the least “fixing”. I mean, yes, he can’t walk or talk or crawl or eat by mouth. And, yes, all of that stuff would be AWESOME…insanely AWESOME! But I guess what I’m trying to say is that it would be icing on an already perfect cake. Because you know what? That kid has the true meaning of life down pat.
The best part of my day (and I’m not afraid to say it) is picking him up from school. I walk into that room, and he lights up like the 4th of July…every.single.time. If he doesn’t, I know he’s sick. He smiles and wiggles. He laughs as we stroll towards the doors. He’s out of his mind happy as we drive down the street. And when we get home and I turn on his TV, he’s in utter heaven. Now THAT doesn’t need fixing.
Samuel knows how to love. He knows how to laugh. He knows how to be happy in spite of his circumstances. He doesn’t complain (unless things are really bad). He doesn’t dwell on the things he doesn’t have. He enjoys what he does have. Man, we could all learn A LOT from that.
Anyway, back to the subject at hand. I do believe in helping Samuel to achieve all that he can. And that’s how I’ve begun to think of his life. I’m done trying to “fix” him because he’s incredible just the way he is. Instead, I’m moving on to helping him achieve the most he can in his life. And I’m not talking about achieving exactly what we all think are important achievements. I’m talking about achieving things that are important to HIM. So, that’s where I’m hoping we’re headed. But most of all, I don’t want pressure anymore to try and make Samuel like the rest of us or just like he used to be. I want Samuel to be Samuel…whatever that entails and however different he is than everyone else. Because honestly, Samuel is better than all of us just the way he is.
(LOVE, LOVE, LOVE his reaction to Nathan’s kiss!)
The plan…to try ONE thing on my list each month and see if it benefits Samuel or not. That should be do-able. And we’ll post our results here so others can see what we’re trying and see if it might be something beneficial for them.
And that’s it :). Nothing earth shattering. Nothing overwhelming (although doing 1 more thing a month with my schedule is a little unnerving, but I’ll push through). And maybe, we’ll see some achievements come along. And maybe we won’t. But at least we’ll be giving opportunities. And that’s really all that matters to me.
So…let the journey begin!