Sam's Journey - It is time

June 9, 2018

The day we thought might not ever come is here. I have not written in 5 months and 8 days, mostly because there was nothing new to report, AND we were so busy with the daily grind of getting to this day, the blog took the back burner. The basic update on Sam's health is that he had a neurology check up in May, and everything is moving along in a positive direction. He continues to regain skills even though it is not at the speed at which he was doing so before, which was completely expected. It is often difficult for us to take note of those improvements since we see him every day, but others who haven't seen him in a while continually comment on the changes they see. 

I will update you on Sam's forthcoming plans in a future entry, but for now, I'm just reveling in the day. All of the plans have been made, and as I sit back and reflect upon what this day means, I am very excited knowing that:

• Sam will be graduating on time with his twin sister and his friends with a half credit more than required. This is happening despite him missing almost a full year of in-school education.
• After not being able to speak or walk or remember the order of the alphabet not so long ago, Sam is officially an honors graduate.
• Two and a half years ago (almost to the day) we weren't sure he would still be here with us, let alone walk the stage and receive his diploma.

Life is good, God is good, and we are grateful to all of you for your love and support as we celebrate this day. We would not have made it here without you, and we hope that you are able to celebrate with us wherever you are. Peace and love and all good things, #TeamSam. You still rock!

Sam's Journey - Happy New Year!

I realize I'm breaking all kinds of blog etiquette rules by not posting an entry for 3 months. The good news is that there's nothing overly panic-inducing going on with Sam. Compared to some of the places we've been on this journey, we will happily accept that. Here's what's been happening in the last 86 days...

Last time I wrote, Sam was getting ready to start serial casting. It was very successful, and they stopped the process shortly before Christmas. He had a total of 7 casts, At least we think it was 7 because it all kind of blended together. He got to pick a different color every week, so at least he had some variety, although I think he's still kind of bummed that he never got to try out the glow-in-the-dark one. He got some good improvement in range of flexion back, and we're now trying to maintain that with more frequent use of the brace, along with a leg immobilizer at night. His walking is ok, but he had to adjust his gait because of the difference in the cast, so he's figuring all of that out again. Overall, it was well worth the inconvenience of getting pulled out of school for appointments. The biggest hassles fell to Jim because of dressing and showering, but on the upside, we didn't have to find matching socks for awhile. One more awesome result, you may have seen on Facebook, but I'll post again here:

We have movement in the left foot! 

When we checked back in with the PMR doc, she noted that his left knee was overly relaxed, so she cut his dose of Baclofen in half, and he only takes it at night now. He's been on that ever since he left OCH rehab, and I've been really anxious to see how he would do without it. It keeps muscles from constantly firing, but the side effects include slower brain function and slurring of speech. If there's anything Sam does NOT need, it's those particular side effects. When we took away the morning dose, we watched him very closely since coming off too quickly can cause seizures, which he's already trying to keep at bay with the Keppra. He had no issues though, and while I'm not seeing a ton of difference in the knee, yet, I'm glad we haven't seen anything negative from that either.

The PMR doc is also the one we go to for the Botox. The last round was better than the first one, but it still wasn't as beneficial as she had hoped. She is willing to try one more round (which is billed at about $14,000 a round) but she also talked about surgery again. We don't really want to head down that road at this point just to recover one isolated movement in his hand. We might change our minds after graduation, but until then, we'd like to stay out of the hospital as much as possible. 

I told Sam I was going to be writing a blog entry and asked if he wanted me to include anything specific. He said that I should include that he hasn't been using the patch for awhile. It's technically for motion sickness, but one of the side effects is that it causes dry mouth. Sam has had difficulty with saliva control ever since the seizures last year, and they were pretty helpful. Unbeknownst to me, he hasn't been using it for awhile, and overall, it seems like his saliva control has improved. While his improvements are not as mind-blowing as when he first began, baby steps are better than no steps at all.

Some of you may have seen on my Facebook page a request for prayers for a young woman who was hit by a car, resulting in very similar injuries to Sam's. Her prognosis was not very positive for a while, but I'm happy to tell you that she is doing incredibly well! She is responding well to therapy, and by all accounts is as much a walking, talking miracle as Sam. God is good! Thanks to all of you who added her to your prayers! I have one more request for you. My co-worker is going into the hospital tomorrow (Tuesday, 1/2) for a C-section. This is her first child, and she and her husband are not the only ones excited about his impending arrival! I'd appreciate any prayers you could say for a safe delivery, and a quick recovery after surgery. Thanks!

On December 12th we hit the two year mark since the accident. I've been going through the blog entries, and it's so hard to fathom how far Sam has come. It almost seems impossible that it all happened, but when I read past posts, it transports me right back to each situation. Sometimes I take for granted how much progress he has made, but reading through everything is a great reminder of how amazing he really is. We're looking forward to seeing what he will do with this new life, and we're honored to share in that journey with you.

To close, I thought I'd share with you this video. We got a recumbant bike for everyone to use, but especially for Sam. Since he's not in rehab officially, it's good for him to have different things to do around here. Hope you all have a happy and healthy 2018!