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.