Rock Climbing

Jake had a really good week. We got to spend time with both sides of our extended family for Christmas, some of which we hadn't seen in a few months. We also had a lot of good quality family time. Todd and the boys took advantage of the nice weather and spent quite a bit of time outside. He and Luke tossed the football while Jake and Todd tossed a lacrosse ball. It was so nice to see them all having fun together.

One highlight of the week (besides Christmas of course!) had to be going rock climbing. Jake and Luke were both on a rock climbing team at Lifetime Fitness for about a year and a half before his aneurysm and have been talking a lot lately about wanting to climb again. Jake's doctor cleared him for climbing at his last visit and thought it might also be really good therapy. There is a rock climbing gym not too far from here so we bought them harnesses and a punch card for visits as part of their Christmas present.

Todd and I were both really excited to take them as well as a little nervous. Jake was a really good climber before and we weren't sure how he was going to react. He had done a little at school a few months ago, but this was "real climbing", tall walls which required harnesses and ropes. I'm happy to report he had a great time and did really well! It was so good to see him reaching and grabbing hold with his left hand, and getting good foot placement with his left foot. He needed some extra support from Todd but it didn't seem to bother him. He was just happy to be there. By the end he was getting pretty tired but they are both looking forward to going back. Here is some video I took http://youtu.be/U3KRj7kLTWE

The botox injections Jake got last week appear to be kicking in. He walking isn't as labored and his left leg is straightening up a bit. I'm looking forward to his PT tomorrow to see what the therapist has to say.

We are looking forward to leaving 2013 behind us and heading into a new year. We've all been through a lot the in the past six months. In addition to the obvious tough stuff, we've gained a lot of new perspective. We've been blessed by seeing the good and kindness in people, have a greater appreciation for the small things, and have grown closer as a family. Wishing you all a very happy 2014.

We Got Our Second Opinion

It's hard to believe it's been just over six months since Jake's aneurysm burst. Having all the extra six month appointments hit right in the middle of the normal holiday chaos has made for some interesting days. :-)

Wednesday Jake had his second opinion appointment with the Children's Ophthalmologist and she found the same thing as the first Dr. which is not what we were hoping to hear. She was able to explain things a little better which helped. From what I understand, his aneurysm and subsequent bleeding caused damage to the brain cells in the area where the optic nerve (actually optic tract when it's that far into the brain) runs through. I asked the Dr. if the optic tract can form new pathways similar to what

we've been told can happen with the brain and she didn't get us much hope. She said most likely the visual field damage would be permanent. There is a very small chance the optic pathways could reform and it could improve the field deficit, some. Time will tell and he'll have repeated visual field checks every six months for the next few years. Vision therapy won't help the optic nerves heal and since Jake has already instinctively been compensating for the loss of vision on that side,  we're going to hold off awhile. He's got quite a bit on his plate with OT and PT.

This visual really helped me make sense of all of this, so I wanted to share. This is looking from the top of the head, the blue represents where the optic nerve/tract are for the left field of vision. Jake's brain bleed was at about position 6 which correlates to loss of left side of his vision. When they showed me the visual field test, it looked almost just like this, with the blue representing what he doesn't see.

On Thursday, we were back at the hospital to meet with Jake's rehab Dr. His walking has really regressed the past few weeks which we think is attributed to the extreme tightness in his left instep. It's been forcing his foot to turn onto the outer edge, even while in his brace, and making his walking appear very labored. (If you stand and tip one foot to the outer edge, you'll feel it pull your whole leg out. Now try to walk, not very easy.) After watching him walk, the Dr. did a thorough exam and didn't find anything else that may be affecting his gait. He suggested giving Jake a different strain of botox to see if that will help relax the muscles so he has an easier time getting his foot flat. Now we just need to wait 4-10 days to see if it helps.

Jake is really looking forward to having the next couple of weeks off. He has no OT/PT or any other appointments this week, which is a much needed break. We'll continue home therapy this week, but are cutting back on that a little too.

We truly are blessed to have our family together this Christmas and have so much be thankful for this year. Thank you to all of you for taking time out of your day to follow Jake's progress and continue to pray for him. Wishing you all a very Merry Christmas.

Bronco Game

I had planned on getting Christmas presents wrapped this evening after the boys went to bed and somehow it's now almost 9 PM and I'm just starting the blog. Not sure where the last hour went...

The highlight of Jake's week was definitely going to the Bronco game on Thursday night. We won four tickets at our school bingo night a few months ago and the boys have been counting down the weeks until Dec 12th. Todd had taken Jake to a game when he was about 3 (he of course doesn't remember going), but Luke had never been, so we were all pretty excited.

It was chilly, but nothing like the cold spell we'd had earlier in the week which was a huge blessing. I'm not sure how long we would have lasted in 10 degree weather.

The boys had so much fun. Luke was a little freaked out by how steep the stadium was which saved us many trips to go buy snacks, he didn't want to move! I think their favorite part was yelling and screaming at the top of their lungs with everyone else when it was time to rally the defense. Unfortunately the broncos didn't win, but we had a really good time anyway. Todd and I had forgotten about the colorful commentary that tends to fly when they aren't playing well and the beer is flowing. :-)

We ended up leaving about 1/2 way through the third quarter. The boys were getting cold and tired and we could tell sitting in the cold that long was getting hard on Jake. He really stiffened up and was having a really hard time walking so Todd gave him a piggy back to the car. Luckily we got to part in the handicap lot right next the stadium.

On Friday, I took Jake to his first session of fascial stretch therapy. The muscles in his legs have been getting tighter and tighter over time hindering his walking and it was suggested we try it. Unlike regular stretching that attempts to isolate and stretch specific muscles, fascial stretch therapy targets fascia, the connective tissue found in, around, and between joints. It was explained to me that the stretching starts at the major joints and if those can be loosened, things will work their way down. I guess a lot of athletes use it to help avoid injury. What was really interesting was when we or one his PT's stretch him, he often winces, is clearly uncomfortable and really doesn't like it. The therapist worked on him for almost an hour and a half and he didn't complain of it hurting at all. I was really surprised when doing his stretches tonight how much more motion he had in his left leg. I'm hopeful that it will continue to help.

Good News and Some "Oh Boy, What's Next" News

It was a week of appointments, some good news and some "oh boy, what's next" news. Jake's first appointment this week was on Monday with a Developmental Ophthalmologist. We knew that he has some left side neglect from the initial aneurysm which included his vision, but we noticed a few things lately that lead us to believe it might be a bigger issue than we thought. It was the first time Jake had ever been to an eye doctor and I could tell he was getting a little unsettled with all the different tests being done. Long story short, we were told Jake has left sided visual field loss in both of his eyes which basically means he is not seeing out of the left half of each both eye. What's good is that he is seeing 20/20 with the vision he has. The doctor said since the vision hadn't come back in six months post injury, it's very unlikely that it will and that it will be permanent. The doctor is referring us to a Rehab Ophthalmologist specialist who works with a lot of brain injury/stroke patients to see if there is any kind of rehab/therapy that can be done to help him compensate. Jake's already started doing some of this on his own out of instinct. Not really the news we were hoping for, but now that we know, we can get him the therapy/help he needs. I did a little research after hearing Jake's diagnosis and found there are several different visual problems that can arise from brain injury and stroke. Three are more impairing than the rest....visual field loss (what Jake has), double vision, and visual/balance disorders. As odd as it sounds, I feel Jake is lucky getting the one he did. 

Then on Tuesday, Jake had his six month post surgery MRI. The only other MRI he had taken was only about 10 minute, so I wasn't prepared for the hour plus he spent in the MRI machine. They wanted to take a thorough set of images both with contrast and without. He was a trooper. I have to admit, I was about to climb out of my skin sitting in that room with all the clicking just holding his hand, I don't know how he stayed calm and still that long. After we were done, we went over to the stroke clinic for his three month post discharge appointment. They had reviewed the scans and said his brain looked good which was great news. They also feel his recovery is coming along really well. We won't have to see them again until May which was also good news. 

While we were there I mentioned what we found out at the Ophthalmologist and was surprised at the strong level of disagreement with the diagnosis. In their experience, they have seen some vision come back after six months and they think the visual issues are just general left sided neglect that will improve over time. They asked that we see one of the Ophthalmologist at Children's instead of the specialist we were referred to since they are more experienced with vision loss in kids. Quite an emotional roller coaster in two days time concerning Jake's vision. While Todd and I are hopeful based on what the stroke clinic said, we are going to wait until we get a second opinion before discounting what we were told Monday.

Jake's Turning 11

What was a good day for Jake today was a really rough day for Todd and I. Jake's 11th birthday is on Tuesday and we celebrated it today with a few of his friends. We decided to keep it small this year with everything that's going on and he invited four friends to lunch and a movie.

Most of the social interactions we've witnessed lately with Jake have been one on one. We haven't seen him in a group since we had some friends over right after he got home from the hospital. It was so hard to watch the four other boys be normal 10/11 year olds and watch Jake struggle to keep up. At the restaurant, Jake was still getting out of the car while they all jumped out and went running to the door. Over lunch, it seemed like he wasn't always able to contribute to the conversation. We had some time to kill before the movie and the boys were running around playing tag, and Jake tried to keep up but couldn't, so he just sat on the bench and watched. Even going into the movie, the four of them were quite a ways down the hall while Todd and I walked with Jake. The boys did absolutely nothing wrong, they were just doing what boys do when they get together...talking, running, laughing, being goofy...and Jake couldn't keep up. Most adults we encounter have a lot of empathy for Jake and take the extra time he needs. I've seen a lot of his friends exhibit that as well when it's one on one, which is pretty remarkable for 10 year olds. But I think the more kids that get together the more the group mentality takes over and they just want to have fun and run around. Again, perfectly normal and we don't blame them at all. But for Todd and I, it was absolutely heartbreaking to watch. Right now, Jake is not a "normal" 10 year old boy and can't do what the other kids do. He's having to recover both physically and mentally and at times it just seems so unfair. I would give anything to be able to take all this away from him.

On the flip side, Jake appeared to really enjoy himself today and didn't seem bothered by the things that were so upsetting to Todd and I. Just being around his friends makes him happy and he was laughing and smiling most of the afternoon. He was also able to sit through almost three hours of movie and previews which is huge. It's much harder on Todd and I watching the interactions that are so different than they used to be than it is on him. Because of how his brain has been affected, I honestly don't know how aware he is of all the things that aren't the same anymore. He sees his physical limitations, but I don't know how aware he is of the changes in his social interactions. I guess for now, the fact he may not be entirely aware is a blessing.

As I end the day completely emotionally drained, I'm trying to remind myself to focus on the fact that he had a good day. He's happy and he's here to celebrate turning 11. For that we are blessed.