Happy Christmas!

How far we've come - we had a lovely Christmas together and Matt was more 'there' than he has been yet. Just two years ago we didn't even think we would eat dinner together because he wasn't on solid food yet. Then when we did have dinner he kept repeating 'prime rib' when all he wanted was the Dr. Pepper sitting across from him. No confusion this year - though quiet, Matt was engaged in the conversations around him and did not seem to get overwhelmed as easily. After 3 days of family dinners, he is feeling good about his interactions and ability to keep up with the crowd. "Slow and steady," he says, "but much improvement."

Getting settled

Things are finally coming along here in New York - Matt started new therapies yesterday and I think it is going to be great. Even though it is an hour away, it is a hospital that specializes in brain injuries and they are excited to be working with Matt. He has OT and speech twice a week for a month and then we'll see what happens next. He continues to improve from what we have seen and it is never too late to discount miracles with him.

Roxbury Farm is working out to be a great place to be. (I put our new address in my profile.) Matt has lots of new places to walk, more people to interact with, and we even got a draft horse, which was one of Matt's dreams for our farm before. We're still getting used to him and don't have specific work to do yet, but Matt's been practicing one-handed driving and takes Milt out with his cart. My sister & I have been logging with our mentor and we can see how Matt fell in love with working with horses in the woods. Even though he won't be in the woods any time soon, I hope he can get some part of his draft power dream back.

Catch up

Its been a crazy, busy few months and I know we have a lot to update, so here goes.

Matt's still attending speech therapy and the fact that he now thinks he sounds better is a big indication of his progress. He's still tripping up over words he wants to say, but he is getting more across than ever before. I've gotten so used to helping him out when he's word searching and now he doesn't want my help - which is awesome, but a difficult change to make. He also struggles around other people and wants me to elaborate on what he is saying, but they almost always understand what he means and its a great confirmation for him.

He is working really hard on all his exercises at home and says he is feeling stronger every day. He hasn't used his cane since April nor his brace since August. August was probably the last time we used an elevator, too - he's always looking for the stairs now. His shoulder and upper arm are stronger and seem to have more range of motion now, but his lower arm/wrist/hand are still pretty weak and not progressing much since they stopped using e-stimulation in therapy. I really wish we could do that at home because it seemed to help the most, but unfortunately that isn't possible.

Finally, we've spent the last couple months making some big decisions and figuring out details of our move. We are going to be leaving Vermont for New York on November 5. Keri will be farming full time at Roxbury and we're hoping to get Matt involved in the farm eventually, too. We are going to be building and adapting a wood shop for him which he is super excited about and he'll still have his mower. He's also found a stables nearby that does therapeutic riding and team driving. He'll figure out a way to be a teamster, yet.

We will be keeping our cell phone numbers for awhile and I will post our new address info in "My Profile" once we move.

Out in the woods

Matt has been walking in the woods around the farm since last year - but only on the farm road. A few weeks ago, we ventured onto a trail nearby that was almost a mile long! This hill is much steeper than it looks and Matt almost turned around before we were halfway, but then he decided to keep going and felt so great about really hiking again. One step at a time we're getting back to things we love to do.

Matt says

Thank you ever so much for keeping up with my life and recovery. Me - better & better - slow but steady. Big time in life and everything happening. Thank you very much for everything you've done. Through the whole deal, we decided we're leaving the farm. Where we go, no idea what is going on. We'll see. -Matt

Matt wanted to tell me what to write on this post. I tried to keep it just like he said it so you can see how he is communicating, but sometimes he wants a little help. I was thrilled he was even interested in trying. This was all he could explain right now and wanted me to take over on the farm story.

Our plans for this farm were centered on his skills as a forester, a climber, and a tree worker. As great as he is doing, we don't know that he will get back to everything he was before so it is hard to re-work ideas for this farm and figure out how we can still take it over by the end of this year. We decided it was time to step back, take more time to regroup, continue healing, and re figure what kind of farm we can run someday with his 'new' skills. This was an amazing place for Matt to be and heal and to dream about the future, but it has become too hard to be here and watch what he can't be doing. It will be so difficult to walk away from this farm (we think sometime this winter), but it is what needs to happen at this point.

slowly coming along

Matt's been doing pretty well since my last post. He goes to therapy alone almost all the time now and the only update I get from him is that his appointment went fine. But then the last few times he has come home happy and tells me that he notices a difference. He even said that speech went well last week - and he never believes us when we tell him he is communicating better.

Today I went along to OT and I saw him move his wrist up slightly without any assistance. He still needs e-stim to be able to pull his wrist all the way back, but to see him move it at all on his own was pretty amazing. He is far from having much functional use in his arm, but each little improvement helps.

Back to therapy

It's been a month since Matt's surgery and things are slowly coming along. He still gets tired pretty easy and is frustrated by how long it is taking to really feel better. His therapists keep reminding him that with a head injury he's particularly susceptible to that post-surgery crappy feeling. I think he was hoping to bounce back and be amazingly better by now and it's hard to be stuck in this slow process again. It's especially hard since spring has come along with all the farm work he wants to be doing and he has to admit he can't do it.

He has been back in speech and OT the past two weeks and they are going well. Whenever we see people or Matt talks on the phone, they say he sounds better than ever. He's even used full sentences when he complains to me about how frustrated he feels. His OT was amazed that he wasn't set back further - in fact, he had improved while he was away from therapy. He's gaining more muscle control in his arm, particularly in bending and straightening his elbow. But because of what he wants to do around the farm, none of this progress is fast or strong enough for him and it's going to be a real test of his patience to get through it.

Home again

Matt actually ate breakfast this morning and was feeling so much better than last night, so they said he could go home today. Once I recovered from watching them remove the drain from his head, they sent us on our way. He's doing really well and back to relaxing on the couch. He'll go back in a few weeks to get the staples removed and later for a follow-up CT, but everything seems good so far.

All is well

Matt is done with surgery and everything went great. I won't be able to see him for a few hours, but the surgeon said he is doing fine. He said that the bone piece was quite a bit smaller than the plastic piece they put in, so now Matt's head will be nice and round and everything will be very protected.

Finally time

We've got Matt's surgery time now and he is really ready for this to be done. We have to be at Dartmouth bright and early and the surgery should start around 7:30. I will post as soon as I can about how everything went. We've been so busy thinking about the surgery that we almost forgot yesterday was April 16th - the day Matt moved out of Crotched Mountain last year! We can't believe how fast this year went by, even though Matt's progress feels so slow. Can't wait to see how the next year goes, especially with his new plastic head.

On the road again

After months of waiting, training, more waiting and testing, Matt is back in the driver's seat and is so very happy. We had to trade his truck in for a car that was going to work better for him and last week we took it in to have a left-foot accelerator and steering knob installed. Adaptive equipment is pretty amazing - and it pops out whenever I need the car. He's been driving to therapy and running errands with me all week and is doing fantastic.

There are still two weeks left before Matt's surgery and he's starting to get nervous. He knows it needs to happen and started out 3 weeks ago ready to have it done, but as it gets closer it's more and more scary.

date set

We went to Dartmouth yesterday to get all the prep work done for Matt's surgery - they did all the pre-op tests and the CAT scan they need to make his plastic implant. As much as we want it to be done quickly, it's going to be a long process to get the new piece ready, so his surgery is set for April 18th. He was really worried that he would be laid up again as much as he was last summer, but his nurse said that once he recovers from surgery (1-2 weeks) and takes it somewhat easy for a few more weeks, he'll be back to long walks and mowing again no problem.

Then we came back and had his regular therapies - his OT re-eval went great and he's scheduled for another month. Almost all of his muscle groups showed increased strength, increased range of motion, or both. He even earned his first 'within normal limits' on one muscle movement - with his elbow bent 90 degrees, he could pull his forearm all the way to his stomach!

One more time

Matt's been having a great couple of weeks - he's getting some new small movements in his wrist and his driving training is going well, too.

But the way his skull looks has really been bothering him - it appears to be 'sunken' around the edge of his original skull. We went back to see his surgeon today and he said that, though very rare, in some cases the body can start to re-absorb the bone wherever it hasn't fused together. So now there are small gaps around his bone plate and some spots are actually sinking as his spinal fluid moves around throughout the day. This isn't causing any damage or putting Matt in any danger, but it can't stay this way forever.

Long story short - Matt has to have another surgery. They will remove the original bone piece and replace it with a plastic one, which is what we had talked about the first time over a year ago. Everything that needs to happen will take a few weeks, but hopefully we will at least know soon when he'll have the surgery. It should just be an overnight stay and then he'll come home again to recuperate before going back to his regular therapies. Its unfortunate that the bone didn't take the first time, but at least there is an 'easy' fix and then Matt can get back to more (and hopefully faster) progress.

Level 4 spelling

Matt's been working really hard on generating words and building vocab and is constantly improving. But writing the words, and especially spelling them, has always alluded him. He has homework assignments that give him a letter and he has to think of a word (no problem) and then write it. For the first column on the most recent worksheet, I wrote the words. By the time we got to the second column, he wanted to write the words, but I had to point out each letter on his alphabet board. Then on the third column, I could say the letter, he'd point it out to make sure and then write it and by the end he was writing the letters as I said them without using the alphabet board. (I hope this makes sense because it was so very exciting.) He's a long ways from spelling on his own, but he's a long ways from where he was even a few weeks ago.

Inclining so slowly

Well it's official - Matt is finished with PT. He's not as far along as we had hoped he'd be, but he has lots of exercises to do at home and will continue to get stronger on his own. He hardly ever uses his cane anymore and will go without the brace sometimes, too. He's been working in the wood shop with my dad a few hours and comes back really sore from standing so long, but he says it's getting better. It's hard to find the right balance of pushing him to get stronger without being so sore that he can't do anything for a few days afterwards.

Matt will continue with OT for now since he's still showing progress in the reevaluations. I wanted to post another video of his arm movement, but he says he is 'inclining so slowly' and wants to wait before we film it again. The tone that makes his fingers and wrist tight has been a lot stronger lately and we have to get that down before he'll gain more movement in his hand. He's back to sleeping with a really hard splint that straightens out his wrist and fingers, hoping that wearing it all night will help that tone calm down.

Matt has also finally started on his driving practice and it's going well. I don't get to go along, but his instructor seems impressed with Matt's adaptability. He has 8-10 more hours of practice, so hopefully by spring he'll be done.

Out and about

Last week (before all the ice) we went out snowshoeing! It was super hard for Matt - especially since he used to spend all day on snowshoes in the woods and now he could only handle about 30 minutes. He came back completely wiped out and sore, but it was fantastic.

More evaluations

Matt's had a busy couple of weeks since the new year - mostly good, with a little frustrating mixed in. His last PT evaluation didn't go as well as we hoped. He's doing great, but his muscles aren't testing any stronger and his range of motion hasn't increased at all with his hamstrings or his ankle. He'll have one therapy a week for the next month and then another evaluation and if nothing increases again, we'll be on our own for PT. It seems especially weird since over the last month he's been feeling stronger and has even given up the cane completely (except for nighttime excursions.) He does know that his progress isn't going to stop entirely, but he is worried that he could be stuck with the brace on his leg forever.

OT, on the other hand, is going great - his arm tested stronger than ever and with more range of motion in almost every muscle group. He's working really hard with his new glove to increase use of his fingers, which isn't there yet, but it seems more hopeful. He was also able to slightly lift his wrist against gravity which he's never been able to do before.

Matt also went for a driving evaluation last week and it went pretty well. They did lots of visual tests and cognitive function tests (which, of course, he was better at than I was). Then they took him out in their car with all the right adaptive equipment and they said he did a great job. He has to go back for 10-12 more hours of training with them & the new equipment before he'll be on his own, but it looks promising for him to be back on the road by spring. He's so excited to finally be able to go places without me again!