Summer Continues On

Summer is in full swing in the Morgan household and we are finally settling into our routine. This week brought a couple of fun activities into the schedule. Monday, Jake got to take part in a bike ride with Adaptive Adventures and the Children's Hospital Sports Program. Adaptive Adventures offers a wide variety of activities (biking, kayaking, sailing, rock climbing, water skiing) to people of all ages with disabilities. For this event, they partnered with Children's and brought their trailer full of kid-sized adaptive bikes to a park on the west side of town. We were really excited for him to check out some other options in adaptive bikes. Last August when we were leaving the hospital, we decided not to look into getting him an adaptive bike since we figured we would only need it for a few months and by this summer he'd be back on his regular bike. A standard two wheeler just isn't an option yet due to his balance issues and not being able to hold onto the handle bars for very long with his left hand. They had him try a recumbent bike which he thought was pretty cool looking. The bike required him to really use both legs and figure out the push/pull motion with the left leg. It was good because he couldn't let the right leg do all the work. That first lap you could see how hard he was concentrating on the leg movements as well as steering. By the second lap, he had it down and was going great, but he was also really tired so we called it a day. A big bonus for me was finding out about Adaptive Adventures and everything they offer. I'm still trying to learn about all the different resources out there. We're hoping to hook up with them on another ride and possibly some other events later this summer. We still are not sure if we're going to look into getting him a bike, but this is a great way for him to get a feel for one and be around other people using adaptive equipment.

Jake continues to work really hard in PT. In addition to the strength training, they are having him walk without his leg brace. (He still has the support inside his shoe for his ankle). We've often walked short distances without it, from the bedroom to the bathroom or as part of home exercises, but this is the most he's walked without the whole brace since the hospital. He walked across the gym, did six minutes on treadmill and back. Granted, it was all pretty slow, but he was able to do it and his ankle wasn't rolling. On Friday, he even walked without his brace while being pulled from the back with a resistance band. Pretty exciting to see.

The boys also fit in some fun stuff this week. They spent Tuesday with my Mom and Dad and went to Golden. We had some pool time midweek and they got to hangout with friends and have a sleepover. All in all a good week! 

Intensive Therapy Has Begun

This was the first week of Jake's six week intensive therapy schedule. I don't know if it's because we had three weeks off or because the schedule is a bit nuts, but I was exhausted by the end of the week! I'm used to having a busy schedule (just like most of us are) but not quite used to so many appointments in one day and spread out the way they are. I tried to schedule things this summer all on Monday, Wednesday and Friday so he can have Tuesday/Thursday off as well as the weekend. As he has said to me on more than one occasion, "I lost all of my summer last year being in the hospital." So in an effort to give him some fun time, we have a couple of pretty crazy days. Some of the appointments we had a choice of times on, others we didn't, so we just make it work.

Here's roughly what one of his weeks looks like:

Jake was pretty wiped at the end of the day on Monday and Wednesday and asked to go to bed about 7:30. PT is really focusing on building strength in his left leg, so they are working him pretty hard. On Wednesday, he did five sets of ten leg presses at 25 pounds with both legs. That was followed up with three sets of 15 at 12 pounds with his left leg. Then he did a bunch of side walking with a resistance band around his ankles, walking forward while being pulled with a resistance band from the back and he finally finishes with the treadmill. I was tired just watching him work so hard!

When we get home, he does rest for awhile, but is also trying to pack in summer fun, so is out jumping on the trampoline, playing games with Luke, hanging out with friends, so it's no wonder he's tired at the end of the day.

We realized last week that we are going to be hitting a lot of "firsts" this summer thinking back to where we were a year ago. Jake and Todd were talking Friday morning about how on the 21st last year, he was getting discharged from the ICU and was heading to the rehab floor. That was honestly one of the single toughest nights in the hospital because we were so unprepared for the shift in care from ICU to a general floor. Jake was having withdrawals from the sedation drugs he'd been on and was a mess. He wasn't sleeping, was constantly fidgeting, HATED his feeding tube (which he pulled out every opportunity he could), wasn't eating or drinking regular food and just wanted water. Tough, tough time. Makes me very thankful for a little bit of a crazy schedule. :-)

Continuation

We survived the week, Jake is now officially a middle schooler! It was definitively an emotional couple of days early in the week, but mostly tears of joy.

The boy's school honors about 20-25 kids each quarter at an assembly with awards for each letter of PACK - Personal Integrity, Achievement, Citizenship and Kindness. At the assembly on Monday, Jake was awarded with an Achievement award. It was a very fitting award to give him considering everything he's accomplished this year. He had no idea his name was going to be called and seeing the look on his face and watching him walk up the aisle to get high fives from all the kids was incredible. He was just beaming.

On Tuesday morning, we had "Continuation," which is a program to honor the 5th graders who have completed elementary school and will be continuing onto middle school next fall. Jake was so excited he was up and dressed at 6:30 in the morning, he doesn't leave for school until 8:30. :-) I left early to get seats for continuation so Todd got to see him off on the bus their last day. I'm actually glad I wasn't there, I know I would have started crying. As I was sitting in the gym waiting for the program to start, I was thinking about how a year ago on the last day of school, Jake was in critical condition in the ICU and hooked up to more machines and medicine than I care to remember. Pretty surreal. The kids processed in and most, including Jake, were grinning ear to ear. They sang a couple of songs and then showed a slide show of the year which is about when the tears started. It was finally time to call each student's name and give them their certificate signifying completion of 5th grade. 

As each student's name was called, there was applause by their fellow classmates and the parents/family. When Jake was called, the applause from the room was completely overwhelming and heartwarming. I was filming and missed the last part because I couldn't stop the tears and had to put down the camera. You could literally feel the love and respect for Jake in that applause. Made me one very proud Mom. Here is the little bit of video I captured. http://youtu.be/3Rmtj6lXGfc

Continuation ended with Jake and two of his best friends performing "Let it Be." Jake was on drums, Jack on the guitar and Connor was singing (he also rewrote the lyrics as "Time To Go"). Jake's music teacher came up with a modified drum set up that allowed Jake to play with his right hand but still have access to several different drums and cymbals. It was so cool to watch him play something close to a traditional drum set. Up until now at home, it's been just one drum and maybe a cymbal. I edited the video down quite a bit since it was almost 4 minutes long, just to share a little bit of the performance http://youtu.be/oLV87vMT_K4. The boys did a really good job, especially considering how little time they had to practice. It was the perfect way to end his time in elementary school.

Since it's Father's Day, I would be remiss if I didn't recognize how lucky Jake and Luke are to have such an amazing, loving dad. He is a great role model for them and definitely puts his family first. I feel very lucky to have him as my husband and would have had a much harder time getting through this past year without his support and partnership. 

Field Day

With all the excitement of Jake's one year anniversary last week, I forgot to mention field day. Last year when Jake was in 4th grade, field day was on May 30th and those are the last pre-stroke pictures I have of him. Oddly enough, it was May 30th again this year.

Jake had been a little worried about how he was going to participate in field day. Many of the activities involve running, use of two hands and general bilateral coordination. His PE teacher has been amazing all year on adapting things for Jake so he could participate and be part of things like everyone else, this was no exception. We went in one day after school so he could walk Jake through the different activities and figure out how he could participate in each one. Knowing what to expect and how he needs to adapt before he gets into a situation has been extremely helpful for Jake. We realized that most of the stations would be doable. When there was a team relay, instead of being the kid that ran to fill cups of water, he stayed on the other end and helped hold the tube the water was dumped into. When it came time for the shoe kick, he sat on a stool instead of standing. Balloon toss, no problem, he did that one handed. There was a dodge ball type game where he stayed the thrower instead of the runner who was trying to avoid getting hit with the ball. There were a few areas where he sat and rested part of the time and that was fine. It was hot and they were doing activities for almost two hours. Was his field day experience different from last year? Of course, but that's ok, everyone else's was too. He got to participate with his friends and he had a blast. At the end of the day, that's what is most important.

Jake has his final day and a half of elementary school this coming week, which I'm already anticipating are going to be very emotional for me. Tomorrow is his final assembly and Tuesday is fifth grade continuation. On many levels I am so happy he is getting to finish out the school year with his classmates and continue onto middle school. On several other levels, I am so sad he is leaving the elementary school that has provided so much support for him not only this year but for previous seven years (he went to preschool for two years there before starting kindergarten.) I am also somewhat terrified to be sending him to not only a new school, but middle school where I don't know any of the staff and they don't know Jake. Every day I sent him off to school this year, I knew there were people who genuinely cared about him, looked out for him, and made sure he was safe both physically and emotionally. I'm not going to have that same level of comfort starting next year and its scary given the situation he's in. I know its normal for parents go through some anxiety when their kids transition into middle school and to be honest, I had a lot of that before his stroke. Now there's an extra layer of angst. I am working very hard on keeping that to myself so it doesn't bleed over into Jake's feeling about middle school. Right now he is excited, which is where I want him to stay.

One Year Anniversary

Oh, what a weekend! Friday night was a tough one. The school carnival was scheduled for the same Friday night as last year and oddly enough we didn't make it this year either. This time it was due to pending thunderstorms thankfully instead of an emergency trip to the ER. With the carnival being canceled, we were at home and I found myself remembering what was happening last year as different times passed during the evening and it hit me pretty hard. As we were putting the kids to bed, it was literally the same time a year ago that Jake was being taken in for emergency brain surgery. It was a pretty emotional at times going back to that day, but I'm glad I had the chance to be at home with just the family and process everything.

Saturday, Jake's actual one year anniversary, was a day for celebration! We had decided about a month ago that we wanted to celebrate his anniversary and include family/friends that have been there for us in so many ways this past year. The weather once again was threatening to be an obstacle with 40% chance of rain, but I kept telling myself all morning that we had a 60% chance it wouldn't rain. With the exception of a few sprinkles right as the party started and the occasional gust of wind, the big storm moved past leaving us with a little bit of cloud cover that made things very pleasant.

 Almost 100 people joined us in celebrating Jake while eating cake and ice cream sundaes. We were so appreciative to have so many people take time out of their busy schedules to join us. I was thinking when I got up yesterday about all the progress Jake has made this past year and it really is a reason to celebrate. He started off in August going to school two hours a day having to ride the adaptive bike to get down the hallway which wiped him out.

He's now there full days, walking everywhere and doing really well. He is getting more and more independent, his walking has improved and appears to finally be consistent (fingers crossed on that one!), he hasn't had to have botox since January, his stamina has improved, his fine motor skills are getting better, his processing speed is increasing, and so many other little things. It really is remarkable how far he has come in a year. He truly is a miracle.

We wanted to do something at the party that was a visual symbol of joy and looking towards the future. We got a couple of large appliance boxes and filled them with balloons (minus the strings that are harmful to wildlife and power lines). The boys didn't have any 
idea we were doing this (thanks to the help from my Dad getting the boxes loaded and keeping them in hiding until the party) and were very curious when we carried the big blue boxes into the park. We ended up having to cover the boxes with a sheet to keep them from peeking. I knew I'd start crying if I tried to say anything the minute I looked at everyone, so let Todd have the honors and he barely kept it together. It's been an emotional year to say the least and at times hard to talk about. We were also very unprepared for the tremendous outpouring of love and support that was sent out our way this past year which has been very emotional  as well. We had two boxes to open, one for Jake and one for Luke. We all know this has been an impactful journey for Luke too and wanted to make sure he was recognized. Up until they untied the the ribbons, they had no idea what was inside. It was pretty cool to see all the kids (and adults) reactions as the balloons were released. Thank you again to everyone who joined us either in person or in thoughts. It was a good day and one that left us with very full hearts.