OT, PT, Speech - Trial #2 - April

April 25, 2012 | Stuff We've Tried

I’ve been bad at posting, but we’re still working away at our “opportunities for progression”. Neprinol seems to do well at 1 dose per day so we’ll be keeping that up for a few months. I do think it increases movement and vocalization for Samuel. Other than that, I can’t be more specific in its benefits. I think it is something that may have deeper effects over time.

Now…all of you who have disabled children are going to laugh at our trial for April. But, it is what it is.

We haven’t done traditional occupational (OT), physical (PT) or speech therapy with Samuel for several years. Honestly, I don’t remember how many years it’s been. My best guess is that we stopped somewhere around 2008 or 2009. We implemented Advanced Biomechanical Rehabilitation (ABR) instead. Samuel did continue to receive OT, PT and speech through the school system during these years, however. But we have thus far spent a good portion of April getting reevaluated and pushing paperwork through insurance so we can hopefully restart these traditional therapies outside of school.

Why did we quit? Well, we had a great PT therapist for a few years and then he moved. We tried his replacement therapist, but we weren’t impressed. Then we tried the only other local children’s therapy establishment and, again, we weren’t impressed. In the end, I got sick of it. I got so tired of going to appointments where the therapists would recommend we try things that we’d already tried again and again and again with no results. It got depressing and so very frustrating. And so, I quit. I admit it. I couldn’t take it anymore.

Last month, I decided we could try again. Funny thing was that I made that decision based on the fact that there was a NEW local pediatric therapy place. I figured maybe we’d be impressed with their therapists :). Guess what I saw when we first walked in the door? A sign stating that it was the same place we’d tried before - they just changed their name and moved. Ugh.

I signed us up anyway. Honestly, I did it begrudginly. I was seriously depressed for the next 2 hours from the 15 minutes I spent setting up the evaluation appointments. I had no idea how badly I disliked the traditional therapies until I was in that office. It felt like walking into the hospital - which usually puts me close to panic mode. But I’ll push through and we’ll try it again. (Listen to me…all “poor, pitiful me”. I wonder how Samuel is going to feel about all this since he’s the one who actually has to participate!)

Honestly, I think the real problem is that no one ever seems to have any idea what to do with Samuel. And I can deal with that IF I don’t have to hear it once a week. But signing myself up to meet with people who will give me all the same ideas to try with Samuel that still don’t work because they don’t know what other options there are for him is just plain self-inflicted torture. Don’t judge. I know it’s supposed to be the “thing” that you do for these kids. But it just hasn’t worked for Samuel in the past and I really hate watching that.

Anyway, here’s to hoping that maybe, just maybe, someone has a few NEW ideas for us. If not, this trial may be very short lived :).

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

Mooing Cow Laughter from Samuel’s Miracle on Vimeo.

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.

The Resolution…

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!

Near-Drowning Tribe

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:

Chocolate
Cheesecake
A nice soft bed at the end of a hard day
Cute boots
Loud and uplifting music on a long drive
Committing with myself to just push through to the end of the day
Tears
Prayers
Scriptures
Church.

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
• G-tubes
• Traches
• Oxygen
• Sleep studies
• Seizures
• Medications
• Therapies
• Medical bills
• Fights for equipment
• Diapers
• Formula
• Surgeries
• Prolonged sicknesses
• Etc.

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)