PT is done....for now

Jake is done with his six week intensive PT! We are so proud of how hard he's worked all summer and have definitely seen an improvement in his strength and walking. I'm anxious to see the comparison between pre- and post-treatment testing tomorrow at his exit evaluation. The plan as of now is to take the next couple of months off from PT and have another intensive session during fall break.

The ironic thing about this is Saturday was the worst day he's had all summer. His walking wasn't very good, his arm was contracted up near his chest and even cognitively, he was just a little off. The good thing is, we know exactly why...he was exhausted. Friday, he had a really hard therapy session in the morning, then we went to acupuncture where they've been doing a movement based treatment. (Instead of lying  down and relaxing, he is getting several needles in his head and he does a series of movements with the right side of his body that he had to imitate with left side.) He then went to a friend's house for a few hours and finally had a class Friday night for his aviation merit badge and didn't get home until about 10:00. Saturday, we had to be out of the house by 8:00 a.m. for the 2nd part of the aviation badge where he went on his flight. Add to that, we could have eaten a lot better on Friday which didn't help anything. Take-out pizza when his body was depleted probably wasn't the best choice.

It was so hard to see him struggle, he really hasn't had any type of regression since well before school got out. It was also a really good reminder for us that we need to keep his activity level in check, make sure he gets plenty of rest and that we're eating well...all three of those being out of balance took their toll. We spent the rest of the weekend keeping things pretty calm and getting everything else back on track. He was doing much better today which was so good to see.

In the midst of all this, the boys got to take their first flight in a small four-seater plane on Saturday. There is an organization called Young Eagles that offers free flights to kids, and Jake got the opportunity to go on Saturday. Taking the ground school class on Friday night and the flight on Saturday allowed him to complete his aviation merit badge for Boy Scouts. With all his therapy we haven't been able to start working on any badges, so he was pretty psyched to get his first one done.

Todd and I were so excited for the boys to get this opportunity and couldn't wait to see them when they got off the plane. We had expectations of ear-to-ear grins and lots of talk about how cool it was.

Things didn't go quite as planned. As I mentioned Jake was pretty tired, they got the very last flight so we had to wait about 2 1/2 hours in the hanger, and it was getting pretty warm. They were both excited to go and a little bit nervous as they headed out to the plane. Everyone got buckled in and off they went. We were surprised to see the plane land after only about 20 minutes but figured it had been a long morning and the pilot was ready to wrap things up. We went out to meet the boys, Jake was sort of smiling and Luke looked annoyed. We found out pretty quickly that Jake had started to feel queasy shortly after they got airborne due to the warmth inside the plane and a little turbulence so the pilot offered to head back which Jake accepted. Luke was having a great time so wasn't very happy his flight was cut short. As Jake told him, when he's a boy scout and gets to be in the front seat, he'll be in charge. I think they ultimately did enjoy the experience, it just didn't last quite as long as expected.

A Weekend Off

Not a lot of new info to share this week...Jake is still plugging along in therapy and very excited this is his last week of intensive PT for awhile.

We took the weekend off from our  errands/to do list and instead we just hung out with the boys which was so much fun. We played putt-putt, hung out in the back yard, had a bean bag toss competition, went to the pool, and spent time with extended family celebrating birthday's. It was such a nice weekend. We hadn't played putt-putt in a really long time and got there early before it got too hot and crowded. Jake was definitely getting tired but seemed to be having a good time. Once again, those crazy things you take for granted...walking through a putt-putt course. You forget how much walking, stepping over things and standing it is. It was nice to see him using his left hand to carry the ball and try and use both hands to swing the club.

Everyone ended the weekend a bit tired, but it was a good tired.

Bubbles

I am really starting to look forward to the weekends more than usual since it's a nice break from all the running we do during the week. It's hard to believe it's already been a month since Jake started intensive therapy. Only two weeks to go, at least for the PT portion!

The only appointment Jake has on the weekends is stretching on Saturday morning. We had very little else planned this weekend, which was a rare treat. Last night we went to Drums along the Rockies which is a regional drum and bugle corp competition. With Jake's love of drumming we thought the boys would really enjoy it. We had never been to one so didn't quite know what to expect. There were 11 different groups competing from several different states and it was really impressive. The musicians were extremely talented and their precision was unbelievable. I saw Jake on several occasions tapping out the beat with his foot or right hand. We all really enjoyed it. 

Today was spent at home with the exception of some quick grocery shopping. I am realizing I need to slow down and take time when the boys ask me to play a game or do something else with them. I find I get so caught up at times trying to get things done, I'm not making time for what's really important...them. We made time tonight and it reinforced that I need to do it more often. After dinner we sat outside and roasted s'mores on the fire pit and then played with giant bubbles. I have been seeing this homemade bubble mix on the internet and we decided to give it a try. (We also made a giant bubble holder with a long piece of string that is threaded through two straws and then tied together. It ends up making a square and the straws as the handles).Luke did great and was making several large bubbles. It's one of those things you take for granted being able to do...use both hands to pull part the bubble holder and run backwards to make the bubble. Jake tried so hard to get his to work. He was doing such a good job using both his right

and left hand to spread the bubble holder apart while walking backwards as quickly as he could but a bubble would start to form then pop or he would accidentally stick his left finger through the bubble. In very typical Jake fashion though, he kept trying and got excited for Luke when he made a really big one. Despite not having great success, he was having fun! 

They finally decided to work together, each held a side of the bubble holder and got lucky when a small gust of wind came up and created their bubble. I would have to say the bubbles were a big hit and I was asked to make another batch tomorrow, but a bigger batch of mix. It was such a nice, relaxing way to end the weekend and a good reminder that my to do list can wait. There probably aren't too many more years that they'll want to hang out with us at night and blow giant bubbles. :-)

Swimming and the 4th

Jake worked so hard in therapy this past week. He had really long days back to back on Wednesday and Thursday since Friday was the 4th, but then got a three day weekend. He is really making some good progress in the pool with his swim therapy too. He's only gone three times and was actually swimming this week. It is so good to see him getting comfortable in the water again, it's been a long time coming...

Last summer right after we got home, we were so excited to take him to the neighborhood pool. His OT kept talking about what good therapy it would be to walk in the pool and we figured he would love doing something "normal" and playing with Luke in the water. We hadn't taken into consideration that his body had forgotten how to swim. Within a few minutes of being in the pool he realized he couldn't swim, got really upset and a bit scared. It was the first of many "why didn't we think of that" moments we encountered after being home and we felt horrible we hadn't better prepared him. When we were in Mexico over spring break, he got in the pool but never where he couldn't touch the bottom. I've suggested going to the pool several times this summer and Jake has only gone in a few times. I hated seeing him miss out on having fun in the pool or looking very hesitant when he would get in. I think he finally overcame all of that this past week.

We were at the pool on Monday and he was playing around in the shallow end but had a pool noodle under his arms for added security. The boys kept making their way further into deeper water and Jake was kicking along just fine. Next thing I know, the noodle slipped out from under his arm, he was bobbing under the water and started to panic since he couldn't touch the bottom. I jumped in and gave him back the noodle and expected he would want to get out. He didn't, he just kept playing. While I was a bit flustered, I was so pleased he stayed in. He was sitting with me drying off a little while later and said  "I think I'm over my fear of the water." Music to my ears! I'm hoping his swim therapy helps him continue to get even more comfortable in the water again.

The other highlight this week was of course the 4th. Jake really loves fireworks and was so bummed he missed seeing them last year. (We had missed them the year before too since everything was canceled due to the fire danger being so high.) He had recently got a new patriotic bow tie and was very excited to wear it. Between that and the flag pattern on his leg brace, he was all set to celebrate! The 4th is also Todd's birthday, so it's always a big holiday for us. We did a few of our own small fireworks and then took the boys to Parker for the big show and were not disappointed. It was so nice to spend the day together with nothing planned, no work, and no appointments.

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.