Archive for the 'Updates' Category
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!
November 6, 2011 | Updates
Life throws challenges at all of us. And somehow, we have to get through them. There are many tactics we use to battle through our trials. Some of them are simple and others, not so much.
Some of my favorites:
A nice soft bed at the end of a hard day
Loud and uplifting music on a long drive
Committing with myself to just push through to the end of the day
But in the end, the best medicine is someone who can truly understand. And in many of our challenges, that someone is hard to come by. I have relied so much on family and friends the last few years. But sometimes, it felt like no one could truly understand. And so, I would turn to my Savior. And I can tell you that He has ALWAYS held comfort for me in those difficult times.
But I do have to say that having someone here, on this earth, in the flesh, who can truly understand the things that I feel, is an incredible gift as well. And a few weeks ago, I spent 4 days with 14 of those people.
We call ourselves “The Near-Drowning Tribe”. We are all mothers of children who have been resuscitated after drowning. All of our children now suffer from anoxic brain damage.
We all live with things like:
- Sleepless nights
- A myriad of doctors appointments
- Sleep studies
- Medical bills
- Fights for equipment
- Prolonged sicknesses
And…we all live with angels.
Being with these women for 4 days was incredible. And I can hardly wait to see them again next year!
I learn so much from them as we compare therapies and treatments we are trying with our children, share stories and ideas, and laugh and cry together. I could spend months and months at other brain injury conferences and never come away with as much information as I do when I spend a few days with these mothers. They have actual experience with brain injury. They know what works and what doesn’t. They are a vast source of information. And they are each INCREDIBLE.
One of my favorite songs (Coming Home by The Nashville Tribute Band) has the words, “I’ve never seen beautiful…like a journey’s end…when nameless faces become my best friends.” Ever since returning from my trip this year, I can’t listen to those words without tears coming to my eyes. All of the women in our group are of different religions. But we all know that one day, our children will be healed.
The words in that song make me think of the day when we will reach our journey’s end; when our children will stand up and walk towards us. And I know at that moment, I will look out at the faces of these women and know that they have become some of my best friends. They already are :). And I’ve only spent a handful of days with each of them.
What an incredible blessing!
Until next year, my sisters in this journey…
Back Row - Left to Right: Janet (Mom to Travis) , Sue (Mom to Luke), Lindsey (Mom to Santana), Tiffany (Mom to Abby), Kehau (Mom to Caleb), Amy (Mom to Jake) , Me (Mom to Samuel)
Front Row - Left to Right: Annie (Mom to Izzy), Dawn (Mom to Collin), Jill (Mom to Seth), Julie (Mom to Joey), Joanna (Mom to Ethan), Lisa (Mom to Brock), Shauna (Mom to Christian), Erin (Mom to Aidan)
November 1, 2011 | Updates
This year Halloween was a bit different for us. It’s so hard to dress Samuel in anything because he has so many sensory issues. That and, well, he’s in a wheelchair so it sort of limits the options. But I just couldn’t stand to send him one more time as something ho-hum. Sometimes, you just want your kid to stand out because they’re awesome, not because they’re different. So, I decided it was time to do something fun and that’s just what we did!
Samuel went as “Russell”, the little boy scout in the movie UP. He was more interested in the balloons during these pictures than he was in me. Isn’t he a cutie, though?
But making his costume turned out to be quite a task. And involving my other boys in it turned out to be quite fun. As I lay in bed last night, thinking of the day we had, I realized that I spent a ton more time this year WITH my kids preparing for Halloween than I ever have before. And you know what? It was fun!
The other discovery I’ve made lately is that sometimes I take Samuel places for my benefit, not his, and that I need to stop doing that. Samuel loves going to school, so I took him in his costume and he had a great day. He also seemed to enjoy trunk-or-treating because it wasn’t too cold yet and there were tons of kids there. But when it came time to go trick-or-treating door-to-door, I went ahead and left Samuel home. It was HARD for me to do. I like to take him with us as often as we can because I want us to be as NORMAL as possible and I want him to be INCLUDED in life. But at the same time, he HATES the cold and thus, he would have HATED going door-to-door. Leaving him home to watch a movie was much more his style. I think I need to keep in mind that although it’s a good goal to include him in all that we can, sometimes it’s ok for him to do his own thing.
Another benefit that came from leaving him home was that I could pay attention to my other kids as we went around the neighborhood. And although we all love Samuel more than we could possibly say, sometimes, the other kids need their time, too.
Nathan was Thor. Well, he was Thor at school and for the 1st half of trick-or-treating. Then he changed into his Captain America costume. I’m telling you, costumes are the best investment with him. He dresses up daily as Batman, Superman, Buzz Lightyear, Thor and Captain America. He can pretend like no one else I know and he LOVES it. Honestly, so do I!
All in all, it was a great day! And, this year, I read a photo post that suggested taking Halloween pictures BEFORE trick-or-treating. Wow, what a novel idea! We always do the jump out of the car, gather round, smile once before heading off to get candy photo and I never really like it. This year, I took a little time with each kid and it was MUCH better! (I did resize them wrong when uploading them for this post, but I’m not doing it again, so you’ll have to deal with them being too large :).
If you know Ben, then you know that he loves anything to do with the army. He threw this costume together at the last second. The fake blood was all I had to buy for it. The helmet with the bullet hole was leftover from his Dad’s childhood adventures. Crazy, no?
Weston was the Men in Black…well, he was one of the Men in Black. His friend was the other. The funniest thing was that I kept telling Wes to stop smiling because he was shooting bad guys and you normally don’t smile when you’re doing that. He couldn’t help it. And if you know him, you know that is just how he is…can’t help smiling…all.the.time!
And that was Halloween.
Fall is hitting hard and the colorful leaves are almost gone. Snow flitters our way for a moment now and then. The warm clothes are out. I’m starting to make Christmas lists. And the fireplace is going each night. Keep cozy!
Can I fit 3 months into 1 post? Sure I can!
October 14, 2011 | Updates
Hmmm, I’m not even sure where to start seeing as how I haven’t posted anything for nearly 3 months. Are you guys all still there? I am. I think. Life has been really, really hectic. Or, maybe I’m just older and it seems that way. Who knows. But here’s the short, short, short version of the last few months.
July was full of family reunions, camping and fun!
August was full of more family reunions, camping, fun and Tom’s 40th birthday party!
I might post pictures of those 2 months at some point down the road (if I get really freakin’ ambitious). But probably not. So don’t hold your breath. I don’t want to be responsible for that!
September brought the start of school. And then…Tanner returning from his mission. I have to post a few pictures of that!
(What you can’t see is the shear excitement bursting through all of us! I know the kids look bored, but I swear they asked me how much longer every single minute we were there. Grandma did, too, but I probably shouldn’t post that here. Whoops!)
The surprise! Literally! Tanner snuck up behind us as we all stood at the bottom of the escalators waiting for him to arrive. I literally turned around and screamed when I saw him. We were busy making small talk with the missionary that flew home with him, but somehow missed seeing Tanner. Not sure how THAT happened! Although I don’t think Tanner could have planned it any more to his liking. If you know him, you know he’s a huge tease and he loved that he surprised us all.
Smiles all around!
A few weeks after he got home, he turned 20! Wow, time sure flies! We had a fun party and are enjoying having him home again.
And that’s the last few months in a nutshell.
Samuel has been doing well overall.
He’s had a few seizures the past few months, but not enough that I want to increase his seizure medications. He has been throwing up more and we have to feed him small amounts every 2 hours in order to get enough nutrition in him each day. It’s a pretty big pain and I hope at some point he gets back to being able to eat bolus feeds (larger portions several times a day). He is growing taller, but we struggle to keep much weight on him. That’s always a big task since he is always moving and burning up calories. I have tons and tons and tons of new things I want to try with him and hope to be able to start some of them soon, but life seems to keep getting in the way.
The good news, though, is that he is pretty much always happy. When he cries, I know something is really wrong. About a month ago he cried for 2 days straight. I had no idea what was wrong and finally took him to the doctor. They said he had a really sore throat, but it wasn’t strep. So, we had to wait it out. No pain medication seemed to work. He cried for a few more days and then it was gone. I hate it when he’s sad.
But most of the time…THIS is my boy…just happy to be doing whatever we are doing. He is certainly a light in our lives!
Here’s to hoping you’ll hear from me again sooner than later :). Thanks for all your support!