August 11th

Hi guys - I've been doing great. I'm going home this Wednesday and I'm really excited. I've been walking a lot more now. Last night my brother Luke got to spend the night with me at the hospital. It was really nice to wake up and have him here.

On Thursday I went on a out-trip. That's where I get to to go somewhere outside of the hospital that I pick. I decided to go to Wholly Cannoli, they have New York style pizza so very thin crust. It was a lot of fun and my whole family got to go with me.

I got Mr. Buehler for my teacher and I'm really excited. I wish I was able to start school tomorrow with everyone, but I'm still in the hospital. I'm going home on Wednesday and I will be back at school soon.

Bye,
Jake

Another Surgery

Jake had surgery today to replace the piece of his skull that had to be taken out back on May 31st. He was a little nervous this morning about the surgery and didn't like the fact he was going to have to get a breathing tube again. Luckily they put it in and took it out all while he was in the operating room, so he was never awake and didn't feel it. Here is a picture of him before he went to surgery. He was laughing at the silly blue suits we had to put on to take him to surgery.

His surgery went well and he's going to rest today and tomorrow morning before he starts therapy again.

On Wednesday, he walked by himself for the first time without a walker or someone helping him. He was really excited. Here is a video  http://youtu.be/hcsfAwzlZSQ He is working so hard in therapy on his walking and getting more use of his left arm.

Jake won't be out of the hospital yet for the first day of school, but he will be starting school again sometime in August for at least a few hours a day. He's really excited to see all of his friends again!

No Concert & Motorcycles

Yesterday I heard that I can't go to the Rush concert that I've been dying to go to since March. The doctors think that it won't be safe for me since my brain is still healing. I'm really bummed out, but next year is their 40th Anniversary and my mom and dad said we'll travel wherever we need to go so I can see them if they don't come to Denver.

I also found out this week that I'll be out of the hospital in 2-3 weeks and I'm really happy about that. The day of the Rush concert, I'm getting my bone flap (that's the piece of skull they took off when I first had surgery) put back in and I'm really excited. Where my skull is missing, my head is soft and squishy, my brother said it feels like a ripe peach.

Yesterday the Harley Davidson motorcycle guys came and I got to sit on one of the motorcycles and they took a picture of me. They also brought BBQ which was really good.

Last night we had a family night where my entire family was here. We ate dinner all together and played games. We played Uno and Apples to Apples, we also ate popcorn. It was really fun.

Jake

Walking and Drumming

Jake has been working so hard in therapy lately. He now has 5-6 hours every day that he has to be meeting with one of the therapists, or in one of his groups. It's a pretty crazy schedule and he gets pretty wiped out. While his muscles are healing and working hard, so is his brain.

He's been practicing walking more and more each day. He sometimes gets frustrated and says to me "Mom, I know how to walk so why can't I?" It's kind of hard to explain to him, but the part of his brain that was injured controls the left side of his body. So not only is his whole body weak from being in bed for so long, his brain has to find new ways to talk to his legs so they can work together. It's really hard work. Here is a video of him walking with a walker. http://www.youtube.com/watch?v=PSX2jsgskSA He is really hoping he'll be walking on his own when it's time to come home.

He also is getting just enough strength back that he has started to drum. He was pretty excited and has been talking about wanting to do this for weeks. Right now the strongest muscles in his upper left side are his shoulder, so all his arm movement starts from there and can be a little awkward. As his whole arm gets stronger, it will get easier for him. You'll see how hard he is concentrating. http://youtu.be/Um2bZNuH-dU

Hi from Jake

Hi guys, I'm doing really good. I'm walking with a walker and can stand up by myself now. Here is a video that my Dad took the other day of me standing. http://youtu.be/lv_kpuU6UYw 

I've got a lot of dog visits while I've been here. I just saw a really fluffy bichon name miles. He was so soft and had a ton of fur. I'm really glad I don't have to groom that dog to keep it brushed and clean, he was really white. My dog got stung by something on the nose and had to go to the vet today but she got some medicine and will be okay. I'm really sad for Molly (my dog).

My brother keeps pushing himself around in my wheelchair when he visits. Yesterday we took a walk and Luke borrowed a wheelchair from the hospital so he could push himself around since I needed my wheelchair. He's crazy. 

Jake
 

Pizza, carrots and apples

Sorry for the long time between posts. Jake was going to post today, but he had a really long day and feel asleep before we could get it done. The thing he is probably most happy about is he can eat almost anything now. He's able to eat pizza, carrots, apples, chips, crackers...just about everything.

Jake is also working super hard in therapy. A few weeks ago, it was hard to stand and hurt his legs really bad. Today, he's standing with just a little bit of support from his therapist and is stronger and more stable. He gets to play a lot of games in therapy, a couple of his favorite are Guess Who?, Kerplunk and Connect 4. They like to give him things like games to do while having him stand so he doesn't think so much about the standing, it's a good distraction.

His left arm is getting stronger to and it's moving more. When he squeezes with his left hard, it's getting to be stronger everyday.

He really misses all of his friends and wants to be having fun this summer instead of in the hospital. I don't think he realizes how hot it's been and how nice this air conditioning feels! We're hoping he'll be home in time to enjoy a little bit of summer, he just needs to get a little stronger first.

Drumsticks....by Jake

Hi guys, I'm doing great. I just found out that I can have soda so I'm having a Barg's root beer. It sometimes tickles my throat a little and it makes me burp a lot. I also get to have popcorn which is one of my favorite snacks. I just got back from therapy and I hated it. They work me really hard and I can barely handle it. My mom said she is adding a video of me in therapy today, this part wasn't too bad. http://www.youtube.com/watch?v=Mp0trF1SdO8&feature=youtu.be

I got a new pair of drumsticks from my friends in scouts, thanks guys. They all signed them, they're really cool. Before I could not wrap my left hand around my drumsticks but now I can. I'm pretty excited about that.

Thanks everyone for all the comments on the blog, I like reading them.

Jake

Visit from Aero

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. Since we can't take pets into the hospital and since it was a little bit cooler today, his Dad and I decided to surprise Jake and brought Aero to the hospital. Jake and I met his Dad outside when he got there and he was really happy to see and hold her. Just a little reminder of home.

Jake is also happy since he is getting to eat a much bigger variety of food now. He really likes breakfast, so today for lunch, he had a double order of bacon, 3 pieces of french toast, french fries, apple sauce, a brownie and raspberry lemonade! It doesn't sound very healthy does it? The Doctors right now are most concerned about him just eating a lot of calories. As his Mom, I can't wait until he can start eating crunchy foods such as carrots and apples like he does at home! It's just great to see him eating so much and really enjoying his food.

Hi again from Jake

Hi everybody - I'm doing great, I've been laying in bed for awhile. I've been watching the Hobbit, I really miss you guys. I wish you could be here with me. I can now eat food that is not pureed, my feeding tube is also gone. I threw up the other day and it came out. I've been eating a lot of buttered noodles and mashed potatoes with butter.

I have a lot of therapy and my brother came with me today and it kind of helped make it better. I now have a brace for my left hand to help me hold my left drumstick. I really want to drum again.

That's about it.
Jake

Hi from Jake

Jake composed this message for today's blog.

Hi everyone,

I'm doing great. I can't wait to come back and see everybody. I have to go to therapy four times a day and I don't like it. They work me too hard and make me sweat. I have to eat pureed food and I hate it. I like the drinks they have here. I have a tube in my nose that I hate. I also have tape all over my face, it's annoying and feels weird. (it holds the feeding tube in) I also have a brace on my arm that I hate, I have it so I don't pull my feeding tube out. I've done that several times. I have a drawing board that I really like and we play a lot of tic-tac-toe. Thank you so much for the cards.

Jake

Eating "Real" Food

Jake was able to start drinking and eating real food yesterday! Well it's very mashed food, like applesauce, pudding, mashed potatoes or regular food that has been blended into mush. His jaw is getting stronger everyday but can't quite chew regular food yet. As he said to me tonight when he was eating blended chicken noodle soup, "it doesn't look very good but it tastes just right." He's also been eating a lot of ice cream and drinking the lemonade he was craving. He hasn't been able to get rid of the feeding tube yet, but hopefully that will be in a few days.

Jake has been working really hard in therapy this week, he goes twice a day everyday. We've been able to take him on walks outside in a wheelchair which he really likes. It's been pretty warm so we don't stay out very long.

Now that he is more awake we've been reading all the cards again and Jake can't believe how many cards he got and all the nice things kids wrote to him. It really helps cheer him up when he's having a rough day.

Meeting Blondie

Jake is getting settled into his new room on the rehab floor. He is talking up storm but his voice is only about half the normal volume. He's working twice a day with the therapists who are helping him get stronger. He's able to roll on his side by himself and is moving his head a lot more. He's really hoping he can start drinking and eating soon and get rid of his feeding tube but first his neck needs to be strong enough.

He's having a really hard time sleeping which is normal when healing from a brain injury. He was super tired today and got really sad because he can't have water yet (actually he wants lemonade) and wants to go home to his own bed. During the middle of his sadness, a volunteer brought her dog by as part of the pet visitation program. Blondie was a gorgeous soft Collie and seemed to help. It's pretty cool that specially trained pets can come to the hospital and make kids feel better.

Jake got a new bed yesterday that has a tent type thing that goes over it and can be completely zippered closed. It's supposed to create a cozy space and keeps him from wiggling his way out of bed. When the nurse saw how much he was moving around the bed now, the concern was that down the road he might try and climb out and hurt himself if we weren't watching. I think he likes it, there are a ton of pillows and blankets in there. By the way, that brace on his arm is to keep his arm straight so he can't pull the feeding tube out of his nose.

Bye, Bye ICU

Jake is moving out of the ICU today!! He's been there for 21 days and has made a lot of improvements. He is saying more and more each day and is just starting to speak in louder volumes. Most of what he says is still very horse and in a whisper, kind of like laryngitis. He is moving up the what's call the rehab floor where he will start doing rehab twice a day to help him get stronger.

He is really sick of being in the hospital and in bed, so I'm hoping moving to a new room will help. The room he's been in doesn't have a lot of privacy since one whole wall is glass and nurses are coming in every few hours to check on him. His new room will have wall and a door and he won't need to be checked on as much so hopefully he can rest better.

His right arm is still really busy and trying to pull at his feeding tube, I think it itches his nose and tickles his throat. I found that playing with silly putty helps keeps his hand busy. He was really excited to see his brother yesterday and keep asking me "When can I see Luke?" Luke came in after his day camp and loved to hear Jake talking a little more and being more awake. Jake also wrote him a lot of notes when Luke couldn't quite understand what he was saying. They even laid in bed together for a little while and watched TV.

We're still not quite ready for visitors yet, he's need to get a little bit stronger, but we'll keep you posted!

Making Progress

Jake is awake a lot of the day now and is starting to slowly say a few words. He's very quiet and a little bit horse but today we got a "Dad", "Hi", "Ok", "Love you too" (that was my favorite) and a "Bye." It's pretty exciting to hear him start talking again after so many days of him sleeping. I can't wait for his full voice and laugh to be back.

He is also starting to write us notes on a wipe-board. Today he asked his Dad "When will I get my freedom." We have to keep his right arm tied down a little because when we don't, he does naughty things like pull his feeding tube out of his nose, he did it three times today! I think he is sick of being in bed.

Jake has also started working with some people called Occupational Therapists (OT),  Physical Therapists (PT) and a Speech Therapist. He needs some helping building up his muscles after laying in bed for 2 1/2 weeks and getting his left arm and leg moving better. He was able to make some movements today with his left arm and left today which was really exciting. It's going to take a little while to get everything working the way he wants, but I know he can do it. The speech therapist is going to help him with exercises to make his throat stronger so it's easier to talk and eat regular food.

No More Breathing Tube

Jake got his breathing tube out yesterday and is doing a great job breathing on his own. We were so excited! The Doctors are taking away more of the medicine that has been keeping him sleepy too. He's still making good progress. 

How Many Staples?

I'm sure some of you have had stitches after hurting yourself and a band aid just wasn't enough to help you heal. The cut they had to make on Jake's head to operate on his brain was pretty big so the Dr's decided to use staples instead of stitches. And the staples came out today! The Doctor said his head is healing very nicely and he won't have much of a scar. (It's all under his hair anyway, so it wouldn't show if he did.)

So how many staples do you think he had? Put your guess in the comments and I'll let you know the answer tomorrow. And parents, no cheating by looking at the other blog. :-)

And the answer is: 49! Update, we found two more staples today that they missed, so that's 51.

Jake had another good day and even got to listen to his favorite band, Rush, for a little while. He still has a lot of tubes and tape holding those in place, it's get really itchy and annoying, plus I think he's just sick of being in bed for 14 days. Anyway, I thought it might help relax him and take his mind off all the stuff bothering him, and I think it worked! I played the music a couple of different times and he really seemed to relax.

Thumbs Up

Jake's been getting better and better each day the past few days. They are starting to give him a little less medicine so he's a little more awake. Since he still has the tube in his mouth helping him breathe, he can't talk but he does use hand signals...thumbs up for yes and a fist for no. We are hoping that tube will be able to come out in a few days.

One Piece of Equipment Gone!

We got to get rid of one of Jake's machines today! Since we can't see his brain the same way we can see a swollen finger or knee, he had to have a small tube with a sensor inside his head to tell us how swollen his brain was. Well he's been doing so well the past 3 or 4 days, they decided he didn't need it anymore. Hooray! Taking medicine and monitors away is a sign he is healing and getting better, so it was a good day!

Reading to Jake

I was really excited to see that Jake was a little more awake today when I got to the hospital. I started reading him some of the cards from his friends, and when I asked if we wanted more, I got a thumbs up. I think he really enjoyed hearing all the nice things they had to say. 

Jake's Progress

Jake has had a pretty good weekend. He's still sleeping with the help of the medicine but is starting to get a little more feisty when the nurses have do things he doesn't like like clean his nose or brush his teeth. He normally doesn't mind brushing his teeth, but they have a tube in his mouth and throat that is helping him breath, so it's kind of in the way and annoying. The reason the Doctors gave him the breathing tube is so his body can use all it's energy to heal his brain and not have to concentrate on other things.

Jake also started getting some liquid food this weekend which is helping him get stronger.

Jake is a Fighter

For those of you who don't know, about a month ago Jake and his brother Luke did a Spartan mud race. The race was only about a 1/2 mile long but it included several obstacles, one being three mud hills they had to climb over (that's the picture in the top right). Jake had already easily climbed over the wooden wall and belly crawled through the mud but for some reason that first mud hill was challenging him. He kept trying and trying, he didn't go around to an easier part or let someone else pull him up. With a lot of perseverance, he made it to the top. 

Jake is a fighter, and just like making it over that hill of mud, he'll fight through this injury. He's having a really good day today and there were able to get rid of one of the medicines he's been on.

Jake's Hospital Room

Fourth graders from Jake's school have sent so many wonderful cards as well as two big banners. I was so excited to hang them in his room to cheer things up. These will be the first things he sees when he wakes up. We started running out of room to put them on the wall and have a basket next to his bed full of the rest of the cards that we read to him when we're there. 

As his family, it's so comforting to read the cards and notes and see how well Jake is liked by his classmates. So many of  

messages are so sweet. You always hope your child is well liked but to see it in writing, especially at a time like this feels very good. His classmates are an exceptional group of kids.

Jake is still sleeping with the medicine the doctors are giving him. As much as I want him to be awake, he needs to sleep for awhile so his brain can heal. He's doing well and making little bits of improvement everyday.

I've heard that many friends would like to visit. Unfortunately, they don't let kids other than siblings come into the ICU where he is staying. As soon as he is ready, I'll be sure to post here so he can see some of friends. 

Jake's Injury

On Friday night, Jake came in from outside with a terrible pain on the right side of his head. He took a short nap and we went to check on him, things just didn't see quite right so we decided to take him to the emergency room. When we got there they did some tests and found out that he was what's called a brain aneurysm and it had burst. Its kind of like when you overfill a water balloon and it just pops, except this was much smaller, about 1 cm. They are extremely rare in kids, so rare that they wanted to get him down to Children's Hospital and do surgery right away. Jake had a really good Dr. and surgery went well.

Because his brain needs time to heal, they are using medicine to let him sleep. I think he's probably going to be sleeping for a few weeks but it just depends on how fast he starts to heal.