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. 

Summer Camp at Roundup River Ranch

We took Jake to camp on June 8th and he got back this past Monday. He was excited to go in the days leading up to camp and even took the news he couldn't have his phone to listen music pretty well (listening to Rush is what he does when he's chilling and needs to recharge).

We got to camp, got him checked in through the medical team and then headed to his cabin. When we were getting ready to leave, I think reality set in that he would be there for six days on his own and he got a little emotional. I had to leave the room because I was on the verge of losing it and didn't want to make things worse. The counselor noticed what was going on, reassured me it was normal and then got Jake engaged in a game. We said our goodbyes and left. I'm so glad Todd was able to go up with me to drop him off because I was a bit teary for the first part of the drive home. While I had complete faith and trust in the staff at the camp, it was really hard to leave Jake. I had so many thoughts going through my head....Would he have fun? Would he make some friends? Would he ask for help if he needed it? He was on his own for the first time since his stroke and didn't know a soul. We are so tuned into when he needs help with something and these people didn't know him, add to that he doesn't always ask for help when he needs it.

It was so strange not having him home, he is pretty much always here. He doesn't go to friends houses very often or to sleepovers like Luke, so his lack of presence was really noticed. Luke commented more than once how quiet it was with Jake gone. I tried to keep busy, but found myself often wondering what he might be doing at that moment or if he was making friends. I broke down emailed the camp recruiter on Friday to check in. She said he was being a little shy and quiet around the other kids but was really enjoying the activities and had just got back from archery. She also said he was drumming that night for "stage night." Nothing she said surprised me, but it was so reassuring to know he was ok rather than wonder.

Jake had decided before he left for camp that he'd ride the bus home and we picked him up from Children's Hospital. (The camp is about three hours away from where we live).  Luke and I went to pick him and I had so much nervous energy waiting for the bus to arrive. It's truly a different experience picking up a child when he's been to this type of camp. It wasn't your typical all the kids unload in a free for all and find their parents. First, there were eight wheelchairs unloaded, all the luggage, three big tubs of medication and an oxygen machine. It gave me a whole extra level of respect for what they do to make camp possible for these kids. We had to get in line, show an ID, give our PIN and sign our kids out. Then they gave back any unused medications and finally called your child to get off the bus. I was so thankful we got there early and only had to wait behind three other people, I needed to see Jake! It was so good to lay eyes on him again.

He said he had a good time and would want to go back again. Success!! He didn't really make any friends, but honestly that didn't really surprise me. It takes him a lot longer now to connect with people and with all the activities they had going on, there just wasn't enough time. He still enjoyed himself and got along just fine. He's been a little more self-sufficient since getting home which is cool to see. All in all, I am so pleased things went well and can't wait to go as a family in October.

Surgery, Bike Rides and Camp

There is nothing quite like having to tell your son he needs to have foot surgery, that was an emotionally draining conversation. We decided not to get into too many details at this point and presented the big picture, then let him ask questions. Just knowing he is having surgery this summer and will have issues walking for awhile post surgery was enough to digest. Just knowing what he did and that he'll be losing almost a month of summer left him pretty upset. It was really important to us to let him feel he had a say in this and make decisions as appropriate. He decided not to do his intensive PT in June that we had planned since we'll be doing so much therapy post surgery. We also talked with his rehab doctor on Thursday and opted not to get botox in his leg this time. He would only have the benefit of it for a month before surgery, so why put him through the shots. We really hate to have his surgery in the summer, but the alternative of waiting until August would present so many more challenges and require him to miss the first couple weeks of school. 

On a much lighter and happier note, we did our first "official" bike ride today!  It was Elephant Rock in Castle Rock will several different rides to choose from all the way up to 100 miles, we choose the 8 mile family ride. After a slightly bumpy start with a flat tire that had to be repaired not once, but twice, we had a great time! It was such a beautiful day with the route going along this really nice path. We got to ride with Adaptive Adventures which was also cool, they had about 11 people participating today. The boys did great, but Jake was pretty wiped out by the time we were done. 

Jake heads off to camp at Roundup River Ranch on Wednesday. He's getting pretty excited and we've been talking a lot about all the great stuff he'll get to do. I think it's going to be such a good experience for him. It will be a long six days here wondering how things are going but I'm sure Luke will keep me busy.

Three Year Anniversary

On the eve of Jake's three year anniversary of his stroke, I have a hard time believing three years have already passed. There are things I can remember about that night like it was yesterday. Others I don't remember at all until I go back and read them here. He has come so far since May 31, 2013...

I was going through some pictures the other day looking for something from his 4th grade year and started going through all the video and pictures we took in the hospital. More than one tear streamed down my cheek, he was in such bad shape. I have people ask me how we got through those three months in the hospital and it was literally one day at a time. I do remember making a very conscious effort to focus on what was happening that day and forcing myself to not get overwhelmed with all the "what next?, what if's?" that would pop into my head. There were so many unknowns and the only way to not make myself crazy was to celebrate the small victories each day and not worry about what was coming tomorrow, next week, next month, next year.

This past year has presented some new challenges in his recovery. The biggest being his growth spurt. I've talked about this off and on and the impact it's had on his walking. When I think back to last July when he was starting to walk more and more without his leg brace and how well he was doing, the difference is pretty shocking. The botox isn't lasting as long or is as effective which brought us to take him to the Gait Lab at Children's a few weeks ago. Tuesday Todd and I will meet with the doctors and PT's to go over the results and discuss the options of where to go from here. I have a feeling I know what's going to be recommended and it's not going to be an easy road...I'll share the outcome of our meeting in the next blog.

Jake finished 7th grade on Friday. A couple of weeks  ago he was chosen to receive an award at the annual middle school awards night. (You may remember he got recognized for band last year at the same ceremony.) This year, he was honored for his efforts in Math. It was kind of funny, after the ceremony, he said to me "I'm not sure why I got the award for Math, it's not my best subject." I explained to him that the award wasn't about who has the best grades but about how hard you try and the effort you put in. I talked to his teacher a few days later and she told me that he consistently participates in class as well as group work and just doesn't give up. I truly believe his persistence is a big part of why he's come as far as he has in his recovery.

All in all, it's been a good year. Jake has continued to make progress albeit a bit slower, but we're told that's normal. I tried to cut back on the support I was giving him with homework and staying on top of things. There were still times that assignments didn't get handed in or he needed reminding to check in with teachers, but from what I hear from some of my friends, that's typical for a 13 year old boy. :-) We still encounter new obstacles every so often, but seem to find ways to overcome them. I think this next year present a whole new set of challenges...it will be his last year of middle school and decisions will need to be made about high school. I also suspect his growth spurts will continue to hinder his overall muscle tone.

Bottom line, we are so incredibly proud of him and feel very blessed.