How it is already 2017?

Time really needs to slow down, that or I need to stop being so busy. Here were are again, two months since I posted. Yikes.

Jake had his 4 month post op appointment in mid-November and his surgeon was really pleased with his healing and progress. All Jake's therapy and work at home has really made a big difference in his walking. The doctor mentioned we could look into changing his leg brace again to something less supportive and more flexible. Talk about full circle...it's the same kind of brace he was given when he was discharged from the hospital. It's made of carbon fiber, fairly narrow on the back of the calf, but it's real benefit is the little bit of spring it gives when stepping from heel to toe. So we've gone from carbon fiber to more rigid and supportive to very supportive full leg to surgery to rigid and supportive  and back to lower profile. We're hoping to get him fit for the new brace in the next month or so since we're tweaking a few other things and don't want to change too many things at once.

We've recently discovered Jake's left leg is about a 1/2" shorter than his right and could be affecting some of his gait pattern. It's a pretty common thing, but when your gait and walking are under a microscope, one tends to pick up on things that would be normal nuisances for someone else. We're trying a small lift in his left shoe to see if helps even things out a bit.

With all the focus on Jake's foot/leg post surgery, we got off schedule with botox for his arm. We normally go every three months and didn't make it in for six months. His bicep had gotten really tight and we noticed the dexterity in his left hand wasn't as good. He got botox back in December and is now in 8 weeks of OT to see if we can't get things working a bit better. He doesn't seem to be responding to the botox as well as he has in the past, but I'm hoping it will just take some time and exercises to loosen things back up.

We're making time to fit in some fun stuff too around all the therapy appointments and went rock climbing yesterday. Jake needed a little support while bouldering (free climbing with the ropes), he did a really good job using his left leg and was trying to use his left arm. It's a good thing the wall wasn't any higher or Todd couldn't have reached!

Geez, it's been awhile!

Life's been a bit busy in the Morgan household which has contributed to my lack of updates. Jake is now two months post cast and still plugging away. He's now walking full time and done using the knee scooter. He's had a few setbacks...at times it feels like two steps forward one step back with his recovery, but at least he's still moving forward. The last couple months, he's had some unexplained hip and knee pain at different times. Fortunately the pain goes away on its own within a week or so but it does tend to slow down his therapy a bit. He's been going to PT twice a week and that will continue at least through the end of November when he's re-evaluated.

The one thing that has been really exciting to see is how straight and stable his left leg is. He can now get his foot completely flat when he walks and it's really made a huge difference. Another issue we have noticed recently is with his right foot. It tends to roll in and wobble a little when he walks. So in addition to rehab on the left side he's also got work to do on the right side.

Last week we headed to Roundup River Ranch for family weekend. This is the same camp Jake attended for a week this past summer. It is so hard to put into words the environment they are able to create there. It's probably one of the most supportive, positive and uplifting places I've ever been. It's a very busy, fun-filled weekend, I just wish it lasted longer. Being part of the neurological weekend there is such a wide variety of diagnoses. While the root cause may be different, the struggles and issues we all deal with are very similar. It's nice to be able to talk to people who "walk your walk."

We packed a lot of fun into a very short amount of time - fishing (both the boys each caught 3 fish), rock climbing, zip lining, horseback riding, painting, games, and dancing. I think my favorite part of the weekend is getting to do it together as a family. I am so grateful we had the opportunity to be a part of something so amazing.

Discover Scuba

It's now been three weeks since Jake got his cast removed. He's still got some swelling but his foot has finally stopped hurting as much and he's walking on it more and more. He started PT a few weeks ago, but it's been pretty gentle and more stretching in nature due to his foot pain. This week starts the twice a week sessions which he'll continue for several months. It's pretty cool to see how much flatter and straighter his foot/leg already is when he walks, even before the intensive therapy has started.

Despite being in the early phases of healing from surgery, he got the opportunity to attend a discover scuba class at Denver Divers last weekend through Adaptive Adventures. Since his brace is plastic, it can easily go in the water, so there was really no reason not to go. We were so impressed with the instructor, he had a very calm, soothing manner that Jake responded really well to. He told Jake they would go at his pace and if he didn't want to leave the the underwater ledge on this first outing that was totally fine. It

didn't end up being an issue. Within an hour, Jake was swimming back and forth along the bottom of the pool and we had a hard time getting him out of the water. He really enjoyed it and we're looking into what would be involved in getting him certified. Due to the weakness on his left side, he would not have a typical independent certification but would instead be evaluated for how much support he would need in an open water dive, most likely an instructor and a buddy (which Todd wants to get certified for). We're really excited to have another possible sport that we could all do as a family. I see a whole new area of gift ideas for upcoming birthday and Christmas. :-)

No More Cast

Jake got his cast off on Friday! I have to say,this past six weeks went by much faster than I thought it would and things were so much easier once he got his walking cast. While he wasn't walking on it full-time (he was using a knee scooter to get around most of the time) just being able to take some steps and put weight on that leg made such a huge difference. We were in Breckenridge with my extended family a few weeks ago to celebrate my Mom and Dad's 70th birthdays and he was getting around surprisingly well on the scooter...playing croquet, sitting by the camp fire, and with the help of an water-tight cast cover he was even able to get in the hot tub.

He started school on the 9th and I was pretty concerned about him being able to navigate through the halls on the scooter. While he had started walking more on his cast at home, getting around a large middle school was a whole different story. We went in and did a trial run with the knee scooter and he's managed really great. It's been a little tiring,  I think his shear determination to be somewhat independent and not need a wheelchair has kept him going.

After he got his cast removed on Friday morning, we went to pick up his new leg brace. I knew he was going back to a shorter brace, but was pleasantly surprised at how much smaller it really was. All of the braces he's had during the past three years had an extra foot piece for added support  to help keep his ankle straight (you can see it in the picture of the brace on the left). The new one is one continuous piece of plastic that supports the back of his leg and goes down under the foot like an L. Being all black it's a little hard to see it in the picture, but we are thrilled that he needs less bracing and it's so much easier to put on. He has to wear it 24/7 except for showering during the next three months to keep his foot in the correct alignment. He's been walking some around the house this weekend, and we're already noticing a better gait pattern. As expected, his leg is pretty weak and his foot gets sore easily. It will take some time before he's back to walking full time and doesn't need the knee scooter. His doctor was really pleased with his healing so far. Rehab therapy starts on Monday which I know will really help in his recovery. I am so excited to see how he continues to process and I will be sure to keep you posted.

Three weeks down,three to go!

Jake got his cast switched on Friday and things look really good. I had no idea how much padding they had put into first cast until he got the new one, it was huge! He still has some swelling around his ankle (that is to be expected) and five pretty good sized incisions that are healing nicely. It was pretty exciting to see how straight his foot was already and they said it will continue to get better.

He had to wait the full three weeks to walk on it, so was able to test it out a bit this morning. He said it hurts a little but he's getting around surprisingly well. I am really hopeful that this is going to make a big difference in the long run for him.

Just wanted to share a quick update, I'll post again when he gets his cast off.

Post Surgery

Wow, being at the hospital for Jake's surgery was a day of flashbacks and memories. We've been to the hospital MANY times since he was initially discharged, but hadn't been back to the surgery center or on the 6th floor where Jake spent his summer three years ago.

Sitting with him in the pre-op area was so different from when we were there to get his bone flap put back in place. In August 2013, the surgery was one of the last steps needed to go home, so while we were nervous, we were also excited as it represented a huge step in his recovery. This time having his foot operated on is the beginning of a long healing process. His feelings about being there were noticeably different too. He was much more nervous, very bummed about having the surgery and what the recovery will entail.

After surgery when he was moved up to a room for the night, we ended up being just two doors down from where he spent over two months in rehab. Just walking down that hall and going into the hospital room brought back a flood of memories. We must have walked up and down that hall hundreds of times coming in and out of the hospital, going to and from the rehab gym...it was just so surreal to be back. That was such a crazy time. We were hoping to see some of our favorite nurses, but none were working the day-and-a-half he was there. We did however get a very nice surprise visit from his impatient OT Ellen who we loved. She stopped by while he was in surgery and again in the afternoon to Jake. It's hard to believe almost three years have passed since he was discharged from the hospital.

The way Jake handles things never ceases to amaze me. He had three procedures resulting in five incisions on his foot/leg. One of them involved cutting bone from his heel and moving it a full centimeter then reattaching it with a metal plate and screws. That should cause a significant amount of pain. We gave him Tylenol and Ibuprofen every six hours for the few days, but didn't wake him up at night to take it. By Thursday, he only had a few doses and this weekend, he only mentioned he was in pain once, and that was because his calf is tight.

While he's been primarily confined to the couch, he has hardly complained at all. And in typical Jake fashion, he is wanting to do things for himself. We have a knee scooter for him to get around on since he can't put any weight on the left foot for three weeks. I generally help him get off the couch and onto the scooter, but looked down in the family room a few days ago and saw him coming back from the bathroom by himself on the scooter. While I appreciate his determination, he really shouldn't be doing that alone. :-) We've been taking walks at night in his wheelchair to get him out of the house, and we're planning to get out and about a little more this week. Luke has been a very supportive brother playing a lot of games and just generally keeping him company. They have also watched a ton of movies, which with as hot as it's been has been a nice diversion for him too.

Thank you so much for all your prayers and check-in's.

Upcoming Surgery

It's crazy how fast this summer is going by. We had so many plans of things to do before Jake has his surgery on July 11th, and now we only have one week left. We did manage to have some fun this weekend with putt-putt and a great bike ride around Aurora Reservoir. We're already making plans for things he can do in his wheelchair after surgery so he can get out of the house.

With surgery just a week away, I think the reality is really setting in with Jake. He was asking a lot of questions at dinner tonight, the big one "Why don't I have a choice?" That's a tough one to answer. As we explained to him, for most everyone surgery is not a choice. Something in their body isn't working the way it's supposed to, and there generally aren't any other options. We don't really want to do this either but if the surgery will help get his foot flatter and make walking easier, it will be good in the long run and a tough decision we have to make. 

He is having three different procedures: A tendon transfer, which will split the tendon that runs along the instep and move part of it to the outside of the foot (this is due the tightness in his foot that causes it to rotate in). His heel cord is too tight so they are going to release it. And finally a heel slide where they cut his heel bone and move it over so his foot gets in better alignment. 

Post surgery, he'll spend six weeks in a cast, with three being non-weight bearing. That's going to be interesting since we live in a multi-level house with a lot of stairs. :-) He's supposed to be able to walk on it after three weeks, so we'll see how it goes. 

Right now our focus is staying positive about how much this should help and trying to keep him from being too nervous. Would greatly appreciate some extra prayers for a successful surgery.