Two Steps Forward, One Step Back

What a week....we had some major highs and major lows and I for one am drained. Add to all of Jake's issues this week, Luke came down with strep throat today. While I know he doesn't feel good, he is adding in some extra drama every time I walk into room. It's made for a fun weekend. :-)

I'll start with the good stuff.

Jake's fifth grade class has been studying the major systems of the human body in science. In groups they had to do some general research on one system, pick three diseases that could affect that system, and finally talk about how one of those diseases might affect a fifth grader. With his modified schedule, he's only been in class for some of this, so it's a project he's been working on at home with his tutor. Jake was assigned the circulatory system and choose to talk about how a brain aneurysm could affect a fifth grader. He and his tutor did all the general research, then I helped him with his story. He dictated in his own words what happened and then he made a list of the ways it has affected him. He decided he wanted to include some pictures and went through and picked out the ones he wanted to share. He got really emotional looking through all the pictures and said it was hard to think about all that time in the hospital. I was so proud of him for not only being willing to share his experience with his peers, but being really honest about some of the more personal ways all this has affected him; especially the things that may not be obvious on the surface. When he practiced at home, he often got a little emotional and was worried he might do that in class. He presented on Wednesday and from what I hear from his teacher, he did a great job. Not only did he do it by himself (the others were presented in groups), but he got through it without getting emotional and the class was really engaged.  His teacher was ready to step in and help if needed or to field questions, but Jake handled it all really well. It warmed my heart to hear his teacher describe it all to me, so proud of that kid! If you'd like to see the story portion of the presentation, you can view it here.

The next good thing, quickly nose-dived. Jake's final cast came off Thursday morning and he got his new leg brace. He was so excited and really thought that casting for five weeks and a new brace was going to make a major difference in his walking. Epic failure on my part not preparing him for the adjustment to walking without the cast. I've never had a cast so it didn't really register that it would take some time getting used to walking with the cast being off. (Logic should have kicked in on that one.) Anyway, his walking has really regressed and it's a huge struggle for him. I think the difficulty he's having is also causing some excessive tightness in his legs which isn't helping anything. After we got home from the appointment, he was in tears because the stretching hurt and he felt the casting didn't work. Jake is usually pretty positive so when he gets down you know he's really discouraged. He was also bummed when he got home from school later that day...he missed a lot of recess because it took him so long to get outside. Adding insult to injury, his fifth grade music performance was the same day and he needed quite a bit of help getting around. Watching him go through this was too much for me and I spent a good portion of Thursday afternoon and Friday morning in tears. The one positive of all of this is he didn't let his mobility issues keep him from being part of the performance and just did the best he could. He had a huge grin on his face while his class played their music which was so good to see. The school pulled out the the adaptive bike again on Friday to make things a little easier. (He hasn't needed it since before Christmas.)

So for now, 2-3 times a day we're stretching, doing extra exercises and walking on the treadmill. I know it will improve with time, but it so hard to watch him hobble along and see his frustration.

Extra prayers would be much appreciated:

 - For the exercises and stretching to do what they need to help him walk easier.
 - Give Jake the motivation to keep fighting and the belief that all the therapies and exercise do help.

Boy Scout Outing

Jake and Todd went on their first boy scout outing this weekend and from the tired looks I saw on their faces when they came home today, it appears to have been a success. They went with 33 other scouts about three hours south of here to La Junta. It was a great first trip since they were staying indoors in an Indian Kiva and then doing visiting Bent's Fort which is a reconstructed 1840s adobe fur trading post on the Santa Fe trail. We were so happy they offer this type of trip early after joining Boy Scouts since he would have not been able to participate in a full on camping trip yet, especially with his cast. He's been voicing a lot of doubts about how much he'll be able to participate in scouts and it was so good to have him take part in a fun weekend. He also earned his first rank of "Scout" last Monday which was another huge boost for him. When I got there to pick him up, he was literally beaming and came right over and told me. It was so cool to see him so proud of an accomplishment.

It was also nice for Luke and I to get quality one-on-one time together. I took him shopping for some summer clothes, went to dinner and saw a movie with some friends. We also had some good couch time. It was much needed for both of us.

Jake is in his final cast, the the fifth in as many weeks. He's been getting around amazingly well and surprisingly, hasn't complained at all which is I don't think would be the case if it were me. He is also supposed to get fit for his new leg brace this week. We're very hopeful between the casting the new brace, it will make his walking easier for him and keep his foot flatter.

Everything else is just continuing on... school, OT, PT, acupuncture, and stretch therapy. He's currently in-between sessions of his horse therapy.

Awards Dinner

A few weeks ago we were invited to attend the Annual Aurora Fireman's Award and Promotions Dinner. The firemen and medic that answered our 911 call were receiving  a commendation and they wanted Jake to present the award. Jake was as excited as I was nervous....I don't know why, but my stomach was in knots all day. As soon as I walked in and looked at the program and saw "Jake's Story", I got all emotional. The speech sharing Jake's story hadn't been shared with us prior to the event so we didn't know what to expect. There were about 300 people in attendance and we sat at a table with the Captain of the crew and his family. (Not sure what the deal is with that strange reflection on my face.)

During the dinner, my Dad was sitting next to the captain and he shared some of the details of that night they came to the house. It's hard to look back and think about how critical Jake was, they honestly didn't expect him to make it. Even this many months later, it's not an easy thing to hear or really even register. I just can't imagine if Jake hadn't survived this. When I look at where he is today, it really is a miracle.

They shared Jake's story and to be honest, I only heard about half of it. I was trying too hard to not sit there blubbering. We went up with Jake (at his request) to present the award. He did such a nice job and we were so proud of him. I still haven't got the official event pictures, but these are what we have.

Oddly enough, the most emotional part of the evening happened afterwards. We got back to the table and I look over at Luke, he had his head down and was crying. I took him out of the room and sat with him and tried to figure out what was going on. The more he talked, the more he broke down. Hearing them talk about the 911 call and the bad shape Jake was in, was just too much for him. It took him back to that day when our household was in complete chaos, fireman were coming in, and the next thing he sees is Jake coming out on a stretcher. He had initially been in the house when we made the phone call, but went outside with our neighbor because he didn't want to see Jake throw up. He said he was just saying to himself "Please let my brother be ok." It broke my heart to think of him standing outside, scared and not knowing what was happening. He also told me he would give away everything he had just to have Jake back the way he was before and not have him going through all this. In a strange way, it was probably good for him to get all the emotion out. I just hate that as a 9 year old, he's had this much to deal with.

We were really honored to be invited to the ceremony and given the opportunity to publicly thank and recognize the crew in front of their peers. They will always have a very special place in our hearts.

Snowboarding or not...

As some of you may have seen on my Facebook page, we went up to Winter Park on Thursday to take a family lesson through the adaptive ski program. Going skiing/snowboarding as a family is something we've really enjoyed the past few winters and is something we wanted to figure out a way to get back to.  Winter Park has an amazing disabled skier/snowboarder program as well as offering a family lesson, so it seemed like the perfect fit. It wasn't just about getting Jake back on his snowboard, but doing it as a family. We didn't want to go up and put Jake in his own lesson and have the rest of us go ski together.

I had very high hopes for our afternoon lesson and envisioned the four of us and an instructor going up on the mountain together and her assisting Jake on an adapted snowboard. I'd seen pictures of the adapted snowboards...they had a metal bar that looks like an upside down square U, so the instructor would face Jake and do all the carving and turning for him. We thought the snowboarding would be perfect with his left ankle issues since his feet are stationary on the board. I had talked to his PT's and they agreed to give him a one day break in-between his casts so we could go. Things didn't go quite as planned...

Long story short, snowboarding was a complete bust and Jake ended up in tears. He was given a regular board, not an adaptive board and his left leg just isn't strong enough yet. In retrospect, trying to go right after he got a cast off wasn't one of my better decisions. But they were off from school, the weather was perfect and we thought getting him back on the mountain would be really good for him. He's also mentioned several times this winter he feels bad that he's keeping the family from skiing this year and I wanted to take that off his plate.

I have to give props to his instructor for coming up with an alternative. She got Jake a ski bike which is a bike frame and uses small skis instead of pedals. We were so proud of Jake for being willing to try it after such a huge disappointment with the snowboard. I was feeling awful for rushing him to get back on his snowboard and causing him yet another letdown. He was a little hesitant at first but ended up doing really well. He never got off the magic carpet/bunny hill (for those non-skiers it's the area for brand new skiers), but  he seemed like he was having fun. Here is some video we took http://youtu.be/-OTd826ccCQ. Luke was also a real trooper, we were so proud of him. He was so patient and just kept making short little runs in the learning area. He and Todd did go make one run on the chairlift towards the end of the day. Luke also gave the ski bike a try and was surprised at how hard it was.

While Jake was still bummed he didn't get to snowboard, he ended up having a decent time and the day ended up being salvaged. His instructor said that he has enough control on the bike and we could take it up on the mountain next time.

We were invited to be part of something else really cool this past week that I wanted to share but I'm waiting for the pictures, so that will have to wait until next week. :-)

Week 2 of the Cast

Jake survived his first week of casting and actually did pretty well. He was even able to have his horse therapy last Monday while wearing the cast. He got a new cast on Friday, this time in red. His PT measured the range of motion in his ankle and it had definitely increased from last week. She told me the numbers, but I didn't write it down, so I can't remember what she said. I'm hopeless anymore if I don't write things down. :-) I'll be sure to take notes this week.

Unfortunately, he's having a much harder time getting around with his new cast. I think the increased stretch combined with a thicker, heavier cast is the cause. He's still able to walk, but it's what we call his wedding march walk. Left foot forward, bring the right one up to match it. It's tough to watch because it seems so labored, but we're just glad he can still get around independently. We're still very hopeful this will help him in the long run, so we'll just be sure to limit outings that require more walking this week.

Jake got another PA (post-aneurysm) first this weekend and had a friend come spend the night. The boys have some really good friends who are brothers and the same age as our boys. Luke was over at their house for a birthday party sleepover so Jake had the older brother come to our house. Missing out on some of these normal kid things has been really tough on Jake. Up until this past month, he was pretty wiped by 8 pm (which isn't too conducive to sleepovers) and going to someone else's house has not really been an option with the extra assistance Jake needs with his leg brace. He was so excited to have his friend over and they had a good time. I have to be honest, I was much happier to have those two here vs. the five nine year-olds at the other house. It was MUCH quieter!