Team Jake

My brother Ryan (along with his friend Alex's Photoshop skills) designed a logo for a t-shirt for Jake. The shirts came yesterday and he was so excited to bring them in to the hospital today. He got one for each of us. He put a lot of thought into the design and they turned out really cool.

Here is the note he gave Jake with the shirt:
Your favorite band is Rush so I incorporated their “Starman" logo from the back cover of 2112 album.  I used this logo because the man symbolizes YOU and the star symbolizes the sky. For me, the man holding the star symbolizes the popular phrase the “sky’s the limit.”  In other words, it means your potential is limitless. Just as the sky seems never ending and infinite, this phrase basically means that there is no limit for you and what you’ll achieve in your life.
You were born and raised in Colorado so I wanted to be sure to include that as part of the logo, too.

Thanks Ryan, we love them! 

Jake got to do a little bit of drumming today too. My other brother, Eric, brought him a digital drum set. It's like one of those portable keyboards but drums. It has a setting for hand drums and he was having a pretty good time playing a few beats. A little while later, for the first time since this all happened, I saw him tapping a beat on his leg with his right hand. He used to constantly be drumming with his hands on every flat surface he could find and it was nice to see that familiar act again. His left hand movement continues to improve every day, so we know he'll be drumming again with both hands in no time.

Back in Action

On June 19^th I posted that my mild mannered, rule follower Jake was MIA, and that I couldn't wait to have him back … today I am happy to report that he is now BIA (Back in Action).  He is so polite and full of please's and thank you's for everyone he encounters. He has become quite the charmer. Part of what makes this so amazing, is the lack of sleep he's getting. If I was sleeping as little as he is and working as hard, I don't think I'd be half as pleasant. :-)

He has really won over his therapists with his hard work and cooperation. They often give him choices for an easier task or a harder one, and he almost always picks the harder one. Now to be fair, as soon as he's done, he tells me he hates therapy and it's too hard on him, but they would never know it by how he acts when he's there.  Several of his nurses have come to really enjoy having him as a patient too. I have yet to see him get annoyed with them even when he is having something done to him he doesn't like. And no, he hasn't followed through on his threat to shine his flashlight in their eyes. 

His agitation and restlessness have also really calmed down. Even last night when he was awake from midnight on, he was just quietly laying there and would ask me to please help him get onto his right side or move him up in bed. He often apologized because he got me up to help him. As many times as I tell him it's my job to take care him and he doesn't need to apologize, he still does. Those of you that know Jake personally, know this is just his nature to please and not be any trouble. 

I really feel that we’ve turned the corner and are now fully engaged in the therapy/rehab phase.  There is still a long road ahead of us, for sure, but it’s such a relief to be at the point where we are now as compared to where we were just a few weeks ago when he first came out of the ICU.  I truly believe that all the prayers from so many people have had a strong influence in this.

Engaging the Left

It's amazing to see how Jake is learning to use his right side to help his left side now that the left side is more engaged. Today in therapy they had him link his hands together so he could use his right arm to help his left arm hit a ball. There is no way he could have done that two or three days ago and I just happened to catch it on video. :-)  http://www.youtube.com/watch?v=Mp0trF1SdO8&feature=youtu.be

We aren't seeing as much of what's happening in therapy since the first half hour is now just the therapists and Jake. I think I mentioned a few days ago that I thought I might be causing a distraction. They tested it out on Wednesday by having us come in half way through and he had a much better session. While I hate not being there, if it gets him where he needs to be faster, I can stay away.

I also just realized that his fixations have really mellowed. It dawned on me after being at the hospital all day yesterday that he's doing it much less than he was. Now he'll quietly lay in bed and rest without the constant repetitiveness and questions. The big thing we still need to conquer is his sleeping. At most, he gets one 4-5 hour stretch during the night and the rest is in two hour chunks. I'm confident it too will get resolved with time.

4th of July

Jake got the day off from therapy and was thrilled! Little does he know, the games we've been playing today were homework from his therapists. :-) We'll keep that little secret to ourselves, plus I'm sure it's more fun doing these activities with the family. Today is also Todd's birthday...we had some quality family time, a wonderful BBQ dinner (thanks Eric and Ryan!), delicious cupcakes from Grandma and are hoping to catch the fireworks downtown from our 6th floor window. We have a great corner room that has big west and south facing windows so we should be able to see several different firework shows from around the city.

Jake is really making good progress on his left side. He was actually able to hold his drumstick in his left hand today. It wasn't a super tight grip, but it was enough to hold it independently. He couldn't wait to tell Todd when he got here and for the first time said "Dad, I'm going to be able to drum again." It was great to see him so excited as most days he doesn't feel he's making progress, since from his perspective, he still can't walk and his left side isn't working like it used to. He is also getting some great movement in his left hamstring and can pull his leg up towards his stomach in a bent position and straighten it out again. Pretty exciting stuff. 

While this wasn't our traditional way to spend the 4th of July, at the end of the day, we're all together. We got to spend some time with extended family and Jake is truly getting better day by day. We can't ask for much more than that.

Progress

I really enjoy going to the hospital to see all the progress Jake has been making since he was moved out of the ICU and started his rehab.  For example, last week he was only able to eat pureed food and barely able to hold his head up on his own.  Last night we ordered him a cheeseburger (no bun), macaroni and cheese, mashed potatoes (extra butter), a brownie, jello and apple juice. Normally this sounds like a very unhealthy and unbalanced meal (which IT IS) but right now the doctors said that caloric intake is the most important thing.  Honestly, it’s just nice to see Jake enjoying himself while he’s eating normal food.  

At this point, we cut the food for him and then he feeds himself.  It’s good practice for him plus we can monitor how big his bites are.  He kept talking about how good the hamburger and brownie tasted.  I think his exact words were “it doesn’t just taste great, I LOVE IT!”  I can only imagine how good normal food tastes after having been fed intravenously in the ICU, then having a feeding tube stuck up your nose for three weeks!!

At this point, Jake’s long term prognosis remains unknown but we are hopeful that he will continue to improve every day until he’s 100%.  He has a tremendous amount of people praying for him right now and I truly believe it is helping.  Please continue to think about Jake, as well as his family, as they care for him during his recovery.

Specific Prayers for Today

1. Jake’s brain continues to heal so he regains all movement and function on the left side
2. Jake’s new medication helps him sleep peacefully throughout the night.
3. Continued strength, patience and energy for Dana, Todd and Luke as they care for Jake during his recovery.

Love, 
Uncle Ryan

Special Visit

Jake has been really bummed he's not having a "summer like a normal kid," is missing shooting off fireworks, really wants to go home and has been missing his pet guinea pig, Aero (named after Aerosmith of course). I had taken him in a picture of her, but it just wasn't cutting it. With the slightly cooler weather today, Todd and I decided to surprise Jake and brought Aero to the hospital. Jake and I met Todd outside when he got there with Aero and he was really happy to see and hold her. He was very sweet too and kept making sure she was in the shade so she wouldn't get too warm. Just a little touch of home. 

Jake was also very excited today since he finally got to eat bacon. He had it for breakfast, then ordered a double order for lunch too!

I have to say while spending our summer at Children's Hospital was not on the top of our to do list, it's a pretty amazing place. We've become very fond of a few of our nurses who really go above and beyond for us. There are also a ton of really cool things that happen there for the kids and their families. It seems like something is going on daily all done by people volunteering their time. We've seen arts and crafts in the lobby, mini concerts, visiting dogs, electric trains, etc. One night last week, there were a bunch of motorcycles parked on the sidewalk next to the front door of the hospital, and the bikers were gathered in the lobby decked out in their leather jackets, skull caps, bandanas, wallet chains, motorcycle boots, etc.  Not what you would normally expect to see when entering Children’s Hospital.  We came to find out that this is the Rocky Mountain Harley Davidson Club, and one evening every week they go up to the various floors and provide free pizza and soft drinks to the parents visiting their children.  It once again reiterates something that has overwhelmed us by this whole ordeal with Jake … that there are so many wonderful and caring people out there.

Therapy

I'm beginning to think my going to therapy may not be helping Jake. I was talking to one of the Dr's  today and it was time for OT/PT, so the therapists took him down on his own. When I was done with the Dr about 15 minutes later, I went into the therapy room and Jake immediately started asking if he could get into his chair and go back to the room. I was told until I'd got there, he hadn't asked once. I sometimes think I bring out more of the whining, complaining, "nurture me" in both my kids. I hope we can figure out a way around this because I really want to be there. Had I not gone, I would not have seen Jake sit unassisted for over 7 minutes. There were a few minor front to back balance bobbles, but he was able to correct himself. It was pretty amazing. I also would have missed out on the most movement we've seen in his left thumb and first finger. It was a good bend from the knuckle. Both OT and PT are really pleased with the progress he's made so far.

He also had a good day in Speech. They were reading Harry Potter this morning and his own book this afternoon. While he needed some prompting to go back to the beginning of each line due to the left side neglect, his comprehension of what he was reading and the ability to retell are really good. The therapist told us the few issues he's having with missing the left half of the page are much easier to re-train than if he were having comprehension issues. She is really pleased with where he is after just over a week of therapy.

We also found out today we are off the soft diet and can expand our food choices. We still need to be careful of foods that require too much chewing (tortillas and bread) or have layers of textures (such as pizza or a cheeseburger) but he could have a hamburger patty and fries. Tonight he had salmon, fried rice and jello, he was pretty excited to have some new flavors.