Look Ma, No Hands!

Jake continues to amaze me. He had a mentally exhausting day today...as we get closer to going home, there are a ton of tests that need to be done to evaluate him for his discharge summary. This morning in speech therapy he had some writing tests, then right after that he had more written tests in OT to check his left side neglect issues (due to the right side brain injury, he doesn't always see things to his left unless he's reminded to look in that direction). He then finished up his PT session, went to school group, and next onto some pretty comprehensive neuro-cognitive testing by the Psychologist. After a quick lunch he had therapy on the bike, a short break before his final speech and OT/PT sessions of the day. To say he was wiped out by his last OT/PT session is a major understatement. 

So here's where the amazing part comes in....after going through a fairly light OT/PT session due to his fatigue, he was walking back to the mat with his therapist and he just let go of her arm and started walking by himself. When they got back to the mat and sat for a minute he wanted to go some more, so they made a lap around the gym. When it was time to head back to his room, she went to get his wheelchair from across the gym and to bring it to him and he says "No, I want to walk to my wheelchair by myself." The kid was exhausted but wanted to keep working since he was walking on his own. He was so proud when he got there, it literally made me cry. To think less than a month ago, just standing was extremely hard, two weeks ago he stood by himself for the first time and now he is starting to walk unassisted. Total tears of joy.  http://youtu.be/hcsfAwzlZSQ

Earlier in the week, we met with the neurosurgeon (the same one that did the initial surgery) who will replace his missing skull piece on Friday. Jake will go into surgery at 7:30 a.m. and we're told it can take 2 - 2 1/2 hours. He will make an incision along the existing scar, peel back the scalp, attach the bone with titanium straps and screws to hold it in place, and then put his scalp back in place and stitch it up. 

The plan is for Jake to take the rest of Friday and Saturday morning to recover, and then be back in therapy by Saturday afternoon…pretty amazing. Surprisingly, this is not considered to be a major procedure although, as always, there are risks involved...the two primary ones being infection and the possibility that the bone doesn't fuse properly and his body could reject it over time. 

Specific Prayer Requests:

1. Please give thanks for the incredible drive and determination Jake has and the progress he is making.
2. A smooth and successful surgery on Friday with no complications or infection.

Harleys, Dogs and Rush

On Saturday, the Rocky Mountain Harley Davidson Motorcycle Club came to the hospital and served BBQ for a couple hours and Jake got to have his picture taken on a bike. They also had someone dressed up as Santa (Christmas in July?) and gave small presents to each of the kids. Jake was pretty excited to be able to sit on the bike...I just hope it's not a sign of things to come down the road when he's older!

Jake also got a very special visit from our dog Molly yesterday. She's been staying with my mom and dad ever since Jake went into the hospital. Every time he gets a visit from one of the therapy dogs, he starts missing our dog, so with the weather so nice and cool yesterday, it was the perfect day for a visit. While she is incredibly sweet, we were joking about what a terrible therapy dog she'd been since she is a bit on the energetic side! (That's my dad in the picture of Jake and Molly.)

Todd and I wanted to thank everyone who has reached out to Rush on Jake's behalf, it appears to have paid off! Todd got a call today from their band manager in Ontario. She said she had received Todd's initial email and then several others and was touched by Jake's story. While the band can't make a visit to the hospital, Todd is meeting up with their road manager on Saturday morning to get a package for Jake. We'll be sure to share what they send over. We aren't saying anything to Jake until we have it in hand, but we're so excited to have received a response!

Jake's stability with the walker is getting so much better. We finally measured the distance from his room to the therapy room and it's 393 feet, so a bit longer than a football field. He walkered down this morning and it took him about 20 minutes. This afternoon he did it in 8 minutes, 2 seconds! He's discovered the less he talks, the better he walks, so he's saving all of his stories for when he gets to therapy.

One Amazing Kid

Thank you for all the suggestions and efforts being made to contact the band. The hospital is also working on trying to see if the band will do anything, so I'll keep you posted. The main issue is the insurance company will not approve an out-trip to a rock concert. It's just not an environment that is conducive to a healing brain and bottom line, it's not worth the risk to his recovery.

I have to say that Jake has truly amazed me today. He had told everyone he's encountered this morning about not being able to go to the concert but follows it up with "We are hoping they'll tour again next year and my mom and dad said we'll fly somewhere if they don't come to Denver and that would be really cool." He really has an amazing attitude, so proud of him.

Now he Knows

Being the bearer of bad news to your son really stinks.

Todd and I told Jake today that he isn't going to be able to go to the Rush concert and he took it really hard. He was so disappointed, it was heartbreaking to watch. Our biggest goal for the conversation was for him not to think it's because he hasn't been working hard enough in therapy, and I think we accomplished that. We explained to him that going to a concert wouldn't be very safe since his brain is still healing and it's too loud with too many lights and too many people. We also told him how hard we, the doctors, and therapists tried to figure out a way for it to happen, but it just can't. There were lots of tears and he felt bad that Todd wouldn't be going either because of him. We tried to lessen the blow by telling him he is getting his bone flap (the piece of skull that was removed) back in next Friday, which he's been wanting for a long time. He was also sent a really cool picture of the Rush drummer on stage in Phoenix that was taken by a friend of one of the hospital staff. Some friends also brought him a vintage Rush concert t-shirt from 1984 and two old LP's. It was pretty funny explaining that this was how we used to listen to music!

It was obviously on his mind the rest of the day because thoughts would randomly come out: "I've been looking forward to going for a long time" , "I've been asking people at the hospital if I was going to be able to go and they said they hoped so" , "I told everyone I was going and now I lied."

While Todd and I were talking to Jake, Luke pulled his dad aside and asked him if he thought Rush could maybe come see Jake since Jake couldn't go to the concert. Todd told him it was a great idea, but Rush is pretty busy and probably couldn't make it. Luke then quietly logged onto YouTube and wrote a comment on one of Rush's video's asking them to please come see his brother in the hospital. Later he said he should have added "I'm begging you to come see him".  He is so sweet and hated to see Jake hurting as much as we did.

We ended up salvaging the evening by playing stupid ring tones on Todd's phone which is always good for laughs among the boys, and having dinner together. I had made stovetop popcorn which is one of Jake's favorites, so we snacked on that and played games afterwards. Jake won several rounds of Uno and Apples to Apples. I'm so glad we told him a little earlier in the afternoon so we could end the day on a positive note.

I'm just glad this day is over so we can focus on his continued recovery and his surgery to replace his bone flap without this black cloud hanging over our heads.

Drumming

One of Jake's biggest goals was achieved this week, he has started drumming with both hands! It was so cool to watch him drum for the first time on Monday, this is something he's talked about for weeks. His left bicep is not recovering as quickly, so the natural up and down rhythm  from the elbow isn't quite there. Right now the strongest muscles in his upper left side are his shoulder and deltoids, so all movement starts from there and can be a little awkward. I took some video on Monday and again today and you can already see some improvement. The lady in the video is Ellen, his favorite OT. Her husband is a drummer so she totally gets how important this is to Jake and can talk the lingo with him. We were very lucky Jake was assigned to her, I personally think it was divine intervention. :-) http://youtu.be/Um2bZNuH-dU

Another major benefit of the improved left arm strength is I got a two arm standing hug from him for the first time in over two months. Jake is one of those kids who comes up and just gives you a hug for no reason, and I didn't realize how much I had missed it until I got one today. He's been giving lots of one-arm hugs ever since he was taken off the sedation drugs, but I have to say, I really like the full hugs better.

Jake has been sleeping a good solid 10-11 hours a night for the past week and is now finally off one of his "heavy hitter" sleep meds, so he's down to melatonin and one other very small dose of a mild sedative. We are hoping to get rid of that one in a few days. It's amazing how much more alert and talkative he's become after dropping the one medication, and his voice is stronger and the inflection is improving. We are so thankful he is getting much closer to normal sleep cycles on his own.

One of the therapists told us that it's not uncommon for a child to progress consistently but somewhat slowly in the early stages of rehab, and then all of a sudden they reach a point where the improvement skyrockets. We're hoping that this is the case with Jake and that during the next few weeks the improvements will be phenomenal. But, as always, we're trying not to look too far ahead and just take it one day at a time.

Specific Prayer Requests for Jake

1. Continued recovery of his left bicep to help ease arm movements.
2. Todd and I are going to tell Jake on Saturday that he is not going to be able to make the Rush concert on Aug 2nd. It was going to be his first concert and something he and Todd have been looking forward to for months. We haven't wanted to take away a major motivator and something he's been so excited about, but unfortunately it's now time. Please pray for us to find the right words to help lessen the disappointment, and for Jake to understand why this has to happen and not lose his motivation to keep working hard.

Walking

Jake's physical therapists have really turned up the emphasis on walking the past few days. In order for him to go home, he needs to be independently mobile. They've had him practicing going up and down stairs, walking with a walker and walking with just someone behind him offering support under his arms. Today at the end of the therapy, they had him walk down a very long hallway. I'm terrible with distances, but it was about as far as two aisles in the grocery store. I had posted some video last week of his walking and have some more today. It's amazing to see the difference, he's working so hard. http://www.youtube.com/watch?v=PSX2jsgskSA

One of the things the therapists are struggling with is whether or not to put him in a leg brace. The muscles that need to activate the ankle are on the left side of the shin. It is slowly waking up and they can't decide if they want to give it more time to come back or put the brace on. The brace keeps the foot at a 90 degree angle so it's ready to go when he steps and could make walking a little easier. But they don't want his leg to become too dependent on the brace and slow down the natural muscle recovery. They'll continue to work with and without it this week before they decide for sure.

While he is working really hard and progressing every day, he still has a ways to go before they feel he is ready to go home. The rehab team bumped his discharge date back today from Aug 7th to Aug 14th. As much as Jake wants to go home, Todd and I want to give him the best possible foundation for outpatient therapy we possibly can and if it means a little more time in the hospital, we'll do it. We didn't communicate the Aug 7th date to Jake and won't give him the new date either. It could easily change again in either direction and we don't want him to get disappointed. We'll just keep adding X's to his "Road to Home" chart and continue working towards going home.

Specific Prayer Requests for Jake:
1. Continued strength and healing of the left leg muscles to aid in walking
2. Stamina to get through all his therapy without getting fatigued

Lazy Sunday

Jake thoroughly enjoyed his day off today. For some reason he chose not to sleep in and woke up at 5, but his Dad was awake too, so they just started their day a bit early. He and Todd had an early breakfast, sat outside for awhile and took a nice long walk.  

As I've mentioned, he has been missing all the normal summer fun and while there are a lot of things we can't bring to him, we thought of one we could. Water balloons. The boys had a great time, including Dad, who was the target of choice. It was so nice to see all of them forgot about things for a little bit and just have fun. Jake and Luke were conspiring about how to best get Dad and after many missed balloons, Luke just took the giant sprayer and attacked. Todd got him back but I think he ended up being the most wet. :-) We also got to enjoy some great music as part of the Sunday concerts at the hospital and this one was out on the patio. Really great afternoon.

Jake got to spend some time with visitors today which he always likes. He really enjoys showing his latest skill/advancement to anyone who is here. He gets the cutest grin when standing for someone for the first time. His left grip is getting really strong and he is getting more and more stable with his assisted walking. His therapists have some big goals for him and we are excited to see what this week brings!