Longer Days and the Broncos

I realized tonight that my posts have been following the same theme as many of our days, ups and downs. I try really hard to stay focused on each day and be positive, but there are times when dealing with all of this just becomes too much for all of us. While Jake is doing really well all things considered, it's hard to see him struggle with so many things that life throws at him. Had I posted earlier in the weekend, this would have been one of the "downs." He had a rough day on Friday (first day of PE, a lot of appointments and a long week), and that combined with some other things going on, took me to the place where I needed to have a really good cry and get it all out. I finally started to shake off the funk I was in on Saturday afternoon and ended the weekend on a better note.

We extended Jake's time at school three days last week to 3 1/2 hours. His fatigue levels are improving and we really wanted to give him the opportunity to participate in some of the things he's really been missing at school. One day he stayed for lunch and the other two he went to Art and PE. He got to have lunch in the classroom with a few friends since we were concerned that the noise and activity level in the cafeteria would be too much right now. He was so happy when he came home on Monday and told me all kinds of funny things his friends had shared. He's always really loved going to Art and was so happy to be back in class. To be honest, PE was probably not the other special we would have picked for Jake this first week, but it's what he wanted to do and I knew the PE teacher would make accommodations so he could participate with his class. A fire drill during PE threw a bit of a kink in things and class didn't end up going as he expected. After a talk with the PE teacher about what happened and how things will look next week, he's excited to go back again.

Jake got a pretty amazing surprise on Saturday afternoon. A couple of  my brother Ryan's friends(Zach and Taryn Wilson and Garrett Townsend)

had been working on something for Jake for awhile and were able to make it happen last week. They had gotten in touch with JD Walton (center for the Denver Broncos, currently on injured reserve) to get Jake an autographed  football. They were hoping for a few signatures and were so excited when they picked it up and saw that the entire team had signed it. Zach, Taryn and Ryan came over Saturday with the ball and a display case. Ryan was very worried the boys might try and play catch with it and wanted to make sure it was protected, we assured him that wasn't going to happen. :-) Jake's been getting into football more since he's been involved with the Warriors and has been watching the Bronco games with us, so he was pretty excited. And I think a little shocked to be honest! It was really cool to look over the ball and see all the players names he recognized. He couldn't wait to show my dad today who is a HUGE Bronco fan and he was blown away. Todd and I were really moved that Ryan's friends wanted to do this for Jake and appreciate all that went into making this happen. He is getting quite the memorabilia collection between this and the things Rush sent!

A Good Weekend

Jake's stamina is definitely improving. We had a fairly busy three-day weekend and he was a trooper. On Friday, there was a case review on Jake at Parker Adventist Hospital with the Paramedics, EMT's and hospital staff that worked on Jake. We were invited to come in at the end so they could see Jake. Because of the rarity of Jake's case, they opened it up to other staff for continuing education credits, so we walked into a room full of about 30 people. Jake was asked to come up to the front of the room and each person who was involved in his care came up, introduced themselves and shook his hand or gave him a hug. We were so proud of how he handled himself. This is a picture with Dr. Markey, the neurosurgeon who discovered the aneurysm and bleed, then put in a bolt (basically drilled a hole in Jake's head) to relieve the brain pressure. He was so nice and personable and Jake's been retelling a few of his funny comments all weekend. His favorite was "What, you don't remember me?" They also gave him a firetruck they had all signed. We were reminded again how lucky we are that Jake is where he is today and greatly appreciated the opportunity to thank everyone in person.

The boys had another football game with the Warriors on Saturday. The team is doing such an amazing job of including both of the boys. Luke was asked to be the kickoff tee retriever and seemed to really enjoy it, but was completely wiped out since the team scored over 40 points. Jake stood for part of the game right with the players on the sidelines and they really made him feel a part of things. The boys got a nice surprise at the end of the game when the players took off their pads and all had on "Team Jake" and "Team Luke" t-shirts they had made the night before.
 
After we got home, Jake spent most of the afternoon outside. He and Todd played some frisbee, then Jake hung out with the neighbor kids. While he can't quite keep up and play all the things they do, he was able to walk around with them and participate and just hang out. It was so nice to see him so happy and having fun. 

On Sunday we had a family birthday party with Todd's family to celebrate his mom's and Luke's birthday. Both boys were happy to see their cousins and hang out for the afternoon. 

All in all a very good weekend!

Pluggin' Away

Geesh, it's been a busy week! It's been one of those weeks were it seems like we've had extra stuff on our schedule every day. Jake is holding up pretty well but I am exhausted!

Jake and I went back down to Children's on Tuesday for his one month post discharge appointment with his rehab doctor. We were so surprised to walk into the waiting area and see one of the friend's Jake made while in the hospital and another family we met during our stay. They were both there for out patient therapy and we were bummed we didn't get a chance to visit since the doctor was running on time. (Can't complain about that though!) The doctor said Jake is doing really well and progressing as he should. It's hard for us to see the progress since we've passed that point where he makes huge gains from one day to the next like when he was in the hospital. Big difference is, then his therapies were twice a day and that was all he had to concentrate on. Now he's part of daily family life, going to school, having homework, socializing, and just "living," so he recovery is not as concentrated in one area.

When I look back though at where he was a month ago, I can see the progress. He's so much more stable when he's walking and can go further distances without the wheelchair. His stamina is also improving and I'm noticing he doesn't come home from school completely wiped out. He is getting himself dressed faster and starting to do little things like carry his plate to the sink after he eats. He is also starting to drum a little again and Todd is really working with him to use his left hand and in the proper position. Jake really wants to take drum lessons again so we're doing what we can to help him achieve that goal. My favorite noticeable progress is the expression he has gotten back in his face. For a long time he didn't have much movement on the left side of his face and when he smiled, only the right side turned up. Now, he has his cute full smile back which helps get me through the day.

Warriors

I've been waiting to do this post for almost two months and am so excited I get to share this with you today complete with pictures.

When Jake was still in ICU, we got a phone call from the Principal of our school asking what we would think about Jake and Luke being honorary captains of his 13 year old son's football team. In addition to teaching them how to play football, the coaches want to teach them how to grow up to be good men. They are trying to impart important life lessons and the team has done things like participating in a toy drive at Christmas. Principal Smith (now Coach Chris to the boys since he is no longer principal of their school) told us what happened to Jake really affected his son Kaden and he thought Jake would offer some good perspective to his team.  Up until now, neither of our boys have been involved much with team sports and we thought it might be a good experience for them.

In late July, Chris and his family came to the hospital so his sons could meet Jake and give Jake and Luke their jerseys. Those of you that have seen Luke know he absolutely loves his an wears it all the time. Jake has wore his some as well (it had pretty stiff competition with his numerous Rush shirts) and told just about everyone he encountered about being asked to be a honorary captain. A few weeks ago the head coach, Bob and his son along with Chris and his son came to the house to talk to all of us about being honorary captains and what it meant to be part of the team. The boys were really excited and went to a practice this past Thursday to meet the team. I wasn't able to go with Todd and the boys, but from the excitement I saw when they got home, they had a great time and it sounds like a pretty impressive group of boys.

We went to our first game on Saturday and it was a great experience. Two of the players gave up their spots to walk out for the coin toss so Jake and Luke could go out, which I thought was pretty amazing coming from 12-13 year old boys. The other team captains out on the field with them were very considerate and inclusive, walked at Jake's pace and didn't rush him. I haven't got a chance to meet these boys firsthand, but was really impressed with their compassion. Chris had invited some of their teachers from the school to be there thinking it would be nice for the boys to see a few more familiar faces, and we really appreciated them coming. (Side note, the size of #13 in the white and the way he's looking down at Luke with a "why are you on the field?" look cracks me up.)

Unfortunately, we weren't able to stay for the whole game due to very dark skies moving our way. The wind was really picking up and with the wheelchair, you can't really make a run for the car if it starts raining. While we there, Jake was very interested in what was happening on the field and seemed to really enjoy the game.

I am really excited about the upcoming season and what this will mean to both the boys.

Oh, and the team won, 46-0. :-)

It's Been a Month

Jake has now been home one month and it seems like we are still learning something every day. Today I learned it's ok to cry with Jake when he is frustrated and overwhelmed.

When we got home from school I could tell something was bothering him, he was really quiet and just had that look on his face. He ended up bursting into tears because he doesn't understand why everything is so hard.  He's right, a lot of things are harder for him right now that he never used to give any thought to. Walking, using his hand to hold his paper in place, taking the lid off a water bottle, etc.

Today he was referring to some things they were working on in Math, he was just having a hard time getting it. I explained to him that even before his aneurysm there were times he didn't understand things right away and reminded him of some of the struggles he'd had with certain math concepts last year when doing homework. I also told him that not all kids understand new material the first time it's explained and it's ok to ask for help. That's when he really broke down and said "They are working so hard to teach me and I just don't understand and I knew how to do this before. Why does everything have to be so hard?" And with that, I just sat down, hugged him, and cried with him. He's right, just about everything he is doing just to function right now is hard and takes a lot of effort. He has to concentrate and work at everything he does whether it be walking and taking big strides, getting dressed, pushing himself up off a chair, going to therapy....his whole life is about focus and nothing is really effortless anymore. It's a lot to have to deal with and my heart just broke for him today not getting to be a regular 10 year old kid like he was just a few months ago.

Another thing we learned this weekend is that we need to make time for him to socialize. With his schedule as busy and structured as it is, there has been very little time for fun and talking with his friends. He's not riding the bus, going out to recess or eating lunch at school, which are all the times kids socialize. He's pretty much stuck with me for most of the day and a therapist or his home tutor for about an hour a day. He really misses being with his friends. We went to his den meeting for scouts last night and I could tell he was tired, but he wanted to stay and just hang out and interact. It's such a hard balance and one more thing we need to figure out how to fit in so he can have a little bit of normal.

My logical side knows all of this will continue to improve and it's just going to take time, but my heart breaks for the loss of the carefree life he used to have.

Fire Station Visit

Today Todd, Jake, Luke and I went to visit the fireman and paramedics who responded to our 911 call on May 31st. Some of them along with the EMT's had asked if they could come and visit while we were in ICU, but we just weren't ready. We then got moved to the rehab floor and Jake's schedule got crazy.

I felt bad when we got there because other than one man, I didn't remember the others even being in our house. Then again, things were a bit intense at that point. We learned a few things today that we didn't know at the time. Within minutes of assessing Jake, they knew he had a closed head injury. At the time they thought it was a delayed reaction from being hit in the forehead with a golf club two weeks earlier (that ended up having nothing to do with the aneurysm). He was in serious enough shape they were considering taking him directly via flight for life straight from our house. It was ultimately decided the ambulance could get him to a hospital faster for further assessment and stabilization. The whole time they were at the house, they were calm, professional, efficient and did not give us any indication of the severity of his injury or even that it was a head injury. I found out today one of them was outside on the phone with the Parker ER determining what would be the best course of action. I'm not sure if they knew then or found out later that one of the Centura Hospital Neurosurgeon's was in the Parker ER. He works out of four Denver area hospitals so the fact he was in Parker and only 10 minutes away was incredibly lucky for Jake.
 

Thinking back to that evening and now seeing it through a different perspective brought back a lot of memories as well as some clarity. Todd and I talked after we left the station about what we were thinking on the way to the hospital that day. We really had no idea what was wrong with Jake and certainly didn't even consider he had a head injury...there had been no symptoms. We thought we'd spend a few hours at the ER, he'd wake up and we would all come home. When we got to the hospital, we were taken to a private waiting room, clue #1 that should have told us something was seriously wrong. Within a few minutes, the hospital Chaplain came in and explained they would take us back to see Jake as soon as they could and then she stayed with us, clue #2. To my knowledge, Chaplains don't generally spend that much time with families in the ER for minor issues. When we were finally taken back about 15 minutes later, I saw all the paramedics, fireman, and EMT's standing off to the side. Clue #3, I don't think they generally hang around the ER for routine cases. What did finally tell us that something was seriously wrong was when we saw 15 or so medical people standing around a screen with a picture of a brain and a large white circle, the bleed, on the left side of his brain (it was taken from the top of the head so the right side of the brain showed up on the left side of the screen). We heard "those are the parents" and several eyes turned our way and took a step back from the screen to make room for us next to the Neurosurgeon. I will never forget that image as long as I live.

As hard it was to have all the initial raw emotion of that evening brought back to the surface, I'm really glad we went today. It filled in a few holes and gave me a more complete picture of the chain of events. They were all incredibly nice and very generous with their time. The Captain at the time has since changed positions and even came in on his day off to see us. It meant a lot to Todd and I to be able to thank them in person for being an integral part in saving Jake's life. They even gave a ride in the fire truck around the block which was pretty cool. I think it was a visit we'll all remember for a long time.

Labor Day Weekend

I am finding there are days I handle things well and days I don't. Today is one of those days I don't. The enormity of what Jake has ahead of him is hitting me really hard today. There is so much he has to re-learn...running, walking barefoot, walking on uneven surfaces like grass and sand, riding his bike, swimming, snowboarding...and those are just some of the physical things, the list goes on and on.

This weekend, we finally all got to the pool. We were so excited for the whole family to be able to go and enjoy a couple hours in the sun. Our OT at the hospital had suggested that walking in the pool would be great therapy for Jake. What didn't occur to us before we got there was how he would react when he realized his body didn't remember how to swim or even just kick his legs.

Shortly after this picture was taken he had a complete breakdown. He didn't understand why he couldn't kick his legs when he's been swimming since he was five. It was heartbreaking. Todd and I felt horrible that we hadn't anticipated his reaction, we thought he'd be so happy to be able to hang out in the pool with Luke and walk around. Big lesson learned on our part. His left foot is extremely sensitive and any texture such as carpet on his barefoot is really hard for him, so was the bottom of the pool. The heat of the pool deck and slipperiness didn't help anything either. Needless to say, our pool time was cut short.

I know we will all get this through this, and this was just one of those things that happened and we'll learn from it. There are also many positives that happen on a daily basis. Jake is getting much more independent around the house, and other than going up the stairs to the 2nd floor or to the basement, he's getting around completely on his own.  I just have to remind myself to continue to take things one day at a time.