Field Day

With all the excitement of Jake's one year anniversary last week, I forgot to mention field day. Last year when Jake was in 4th grade, field day was on May 30th and those are the last pre-stroke pictures I have of him. Oddly enough, it was May 30th again this year.

Jake had been a little worried about how he was going to participate in field day. Many of the activities involve running, use of two hands and general bilateral coordination. His PE teacher has been amazing all year on adapting things for Jake so he could participate and be part of things like everyone else, this was no exception. We went in one day after school so he could walk Jake through the different activities and figure out how he could participate in each one. Knowing what to expect and how he needs to adapt before he gets into a situation has been extremely helpful for Jake. We realized that most of the stations would be doable. When there was a team relay, instead of being the kid that ran to fill cups of water, he stayed on the other end and helped hold the tube the water was dumped into. When it came time for the shoe kick, he sat on a stool instead of standing. Balloon toss, no problem, he did that one handed. There was a dodge ball type game where he stayed the thrower instead of the runner who was trying to avoid getting hit with the ball. There were a few areas where he sat and rested part of the time and that was fine. It was hot and they were doing activities for almost two hours. Was his field day experience different from last year? Of course, but that's ok, everyone else's was too. He got to participate with his friends and he had a blast. At the end of the day, that's what is most important.

Jake has his final day and a half of elementary school this coming week, which I'm already anticipating are going to be very emotional for me. Tomorrow is his final assembly and Tuesday is fifth grade continuation. On many levels I am so happy he is getting to finish out the school year with his classmates and continue onto middle school. On several other levels, I am so sad he is leaving the elementary school that has provided so much support for him not only this year but for previous seven years (he went to preschool for two years there before starting kindergarten.) I am also somewhat terrified to be sending him to not only a new school, but middle school where I don't know any of the staff and they don't know Jake. Every day I sent him off to school this year, I knew there were people who genuinely cared about him, looked out for him, and made sure he was safe both physically and emotionally. I'm not going to have that same level of comfort starting next year and its scary given the situation he's in. I know its normal for parents go through some anxiety when their kids transition into middle school and to be honest, I had a lot of that before his stroke. Now there's an extra layer of angst. I am working very hard on keeping that to myself so it doesn't bleed over into Jake's feeling about middle school. Right now he is excited, which is where I want him to stay.

One Year Anniversary

Oh, what a weekend! Friday night was a tough one. The school carnival was scheduled for the same Friday night as last year and oddly enough we didn't make it this year either. This time it was due to pending thunderstorms thankfully instead of an emergency trip to the ER. With the carnival being canceled, we were at home and I found myself remembering what was happening last year as different times passed during the evening and it hit me pretty hard. As we were putting the kids to bed, it was literally the same time a year ago that Jake was being taken in for emergency brain surgery. It was a pretty emotional at times going back to that day, but I'm glad I had the chance to be at home with just the family and process everything.

Saturday, Jake's actual one year anniversary, was a day for celebration! We had decided about a month ago that we wanted to celebrate his anniversary and include family/friends that have been there for us in so many ways this past year. The weather once again was threatening to be an obstacle with 40% chance of rain, but I kept telling myself all morning that we had a 60% chance it wouldn't rain. With the exception of a few sprinkles right as the party started and the occasional gust of wind, the big storm moved past leaving us with a little bit of cloud cover that made things very pleasant.

 Almost 100 people joined us in celebrating Jake while eating cake and ice cream sundaes. We were so appreciative to have so many people take time out of their busy schedules to join us. I was thinking when I got up yesterday about all the progress Jake has made this past year and it really is a reason to celebrate. He started off in August going to school two hours a day having to ride the adaptive bike to get down the hallway which wiped him out.

He's now there full days, walking everywhere and doing really well. He is getting more and more independent, his walking has improved and appears to finally be consistent (fingers crossed on that one!), he hasn't had to have botox since January, his stamina has improved, his fine motor skills are getting better, his processing speed is increasing, and so many other little things. It really is remarkable how far he has come in a year. He truly is a miracle.

We wanted to do something at the party that was a visual symbol of joy and looking towards the future. We got a couple of large appliance boxes and filled them with balloons (minus the strings that are harmful to wildlife and power lines). The boys didn't have any 
idea we were doing this (thanks to the help from my Dad getting the boxes loaded and keeping them in hiding until the party) and were very curious when we carried the big blue boxes into the park. We ended up having to cover the boxes with a sheet to keep them from peeking. I knew I'd start crying if I tried to say anything the minute I looked at everyone, so let Todd have the honors and he barely kept it together. It's been an emotional year to say the least and at times hard to talk about. We were also very unprepared for the tremendous outpouring of love and support that was sent out our way this past year which has been very emotional  as well. We had two boxes to open, one for Jake and one for Luke. We all know this has been an impactful journey for Luke too and wanted to make sure he was recognized. Up until they untied the the ribbons, they had no idea what was inside. It was pretty cool to see all the kids (and adults) reactions as the balloons were released. Thank you again to everyone who joined us either in person or in thoughts. It was a good day and one that left us with very full hearts.

Walk-a-Thon

Jake made me one very proud momma this week,he never ceases to amaze me. Friday at school they had their annual walk-a-thon to raise money for the specials department (art, music and PE). The goal is to walk as many laps as you can in 30 minutes, 16 laps equaled a mile. We had talked quite a bit in advance about how Jake was going to deal with it this year, and he decided he would walk a few laps, then get on the adaptive bike to finish out the half hour. He had PT on Friday morning and was telling his therapist about it and that his goal was to walk ten laps. Good for him to set a big goal, but I was thinking finishing five would be great before he got tired and switched to the bike. The walk was set up on the grassy area of the playground and with all the rain we'd had over the past few days the bike wasn't an option, it would have been too hard to pedal on the grass. Jake and I talked for a minute and I told him to just do what he could and if needed to rest, no big deal. 

The first half of the walk, I was volunteering and marking the cards on kids backs as they finished each lap. Jake didn't always come through my line, so I lost track of how many laps he had completed. After I was done with my time slot, I went and walked a few laps with him. When I looked at the card on his back and it said he had already completed nine laps in about 15 minutes I was shocked. I spent the rest of the time on the sidelines, watching him make lap after lap, he was grinning the whole time. A lot of the kids were running or focused on completing as many laps as they could, but a few of his friends 
slowed down and did a couple of laps withe Jake. He ended up completing 18 laps. Jake, who has had days he could barely walk at all, walked over a mile in a half hour. I stood there watching him and cried. I couldn't help it, I was so proud of him. 

The other very exciting thing happening for Jake next week is a much needed break from therapy. His PT's want to do an intensive six week strength training three times a week this summer and suggested we give him three weeks off prior to starting. Todd and I talked about it and decided to take it one step further to see about giving him a break from all appointments. I talked to his OT and acupuncturist about taking a break from those as well, and they were both on board. Other than when we were on vacation for a week, this is the first big chunk of time he'll have had off since he started rehab in the hospital last June. For three full weeks,he'll go to and from school on the bus, doesn't have to leave early or come in late due to therapy, and gets to be a regular kid. His time and energy can be spent enjoying all the end of year activities as his time in elementary school comes to an end. He is so excited. I would say it's time well deserved. 

Rockies Game

I am ending this weekend with a very full, happy heart. It's been a great week on so many levels and I am feeling very blessed.

We went to see Jake's Neurosurgeon this week and for some reason I needed to ask him details about Jake's stroke. Back when all this was happening, there were so many things to be concerned with, I never asked. I wanted to know how bad his stroke was and if they rate them somehow, he just said "It was bad." He went on to show us Jake's scans and explained the severity of his stroke was due to the size of the bleed, the pressure that was caused from the bleed and the damage to the vascular structure in and around the bleed area. He then showed us the scan that was done right after surgery and it had a pretty large gray area, that was the area of damage. I hadn't remembered seeing that scan before and was quite surprised to see how extensive the damage was. He then went on to tell me that the fact they did surgery within 30 minutes of Jake arriving at Children's also speaks to the seriousness of the situation, that's not something they like to do that quickly if they can help it. The last thing he said was "I'm not saying this to be dramatic, but it was life threatening. Jake is a miracle." Wow. A lot of these are things I knew on some level, but hearing them almost a year later I processed it differently. After we left his office, I got this overwhelming peace and warmth followed by feeling so thankful that Jake is doing as well as he is. I watched him walk down the corridor with so much pride, he has worked so hard to get where he is today.

Then of course we had the Rockies game yesterday. It was a really great night. There were about 20 survivors that got to go onto the field, five were kids. They all got to stand behind home plate while the announcer shared about the symptoms of a stroke and then read the stories of five of the survivors. Blake Doyle, the hitting coach, came over to shake hands will all the kids before the game. The next thing I know, he grabbed Jake and took him further out onto the field to take pictures. I thought it was pretty cool he took time to come greet the kids.

When they started sharing some of the survivor's stories, Jake happened to be standing next to one of the girls being featured and got his picture up on the jumbotron above all the scrolling names.

I think the thing that made me the happiest about the whole evening was seeing Jake have so much fun. He loved being on the field and seeing himself on the jumbotron but I think for him, getting to hang out with one of his best friends was just as good. When Connor found out Jake was being honored at the game, he asked his parents if he could go. He had seats a few rows back from us but there was an empty seat in our row, so he came and sat with Jake during the game. Watching the two of them was pure joy. They talked, laughed, cracked jokes, and danced when the music came on trying to get on camera. It was the most "pre-stroke" Jake I've seen since all this happened a year ago. All our extended family came to the game and I got calls and texts today from them commenting how great it was to see him have so much fun. I couldn't agree more.

It's hard to believe that on May 31st, it will have been a year since all this happened. Todd and I have been talking a lot about how we wanted to recognize his first anniversary as a survivor. We decided we have a lot to celebrate so we are throwing a party. This has been a tough year to say the least, one we could not have got through without all the prayers, love and support we've received. In addition to all the people I know that have offed support, there are many of you I've never met that have prayed for Jake and read the blog regularly. If  any of you would like to join us to celebrate how far Jake has come, we'd love to have you. We'll be having cake and ice cream sundaes on May 31st from 2:00-4:00, come and go as you can. I hit a little snag with our original location on Friday, so will be figuring out the new one on Monday. Please send an email to dkmorg@gmail.com and I'll get you the details.

Percussion Performance

First I want to wish all my fellow moms a very Happy Mother's Day. For me, being a mom is the most important, rewarding (and at times challenging) thing I do. There is no doubt that this past year has been the toughest I've had so far in their short life. I've discovered a strength I didn't know I had, shed A LOT of tears, and experienced a lot of joy. I feel blessed everyday that Jake and Luke are in my life and call me mom. 

Enough about me,  a lot of good stuff happened for Jake this week! We found out that he gets to go on the field before the Rockies game and his name will be displayed on the jumbo tron. He is so excited! I'll be sure to take lots of pictures and share them next weekend.

Jake also had his percussion performance on Tuesday. I think I've mentioned before that he was in the percussion group at school last year and it was something he really wanted to do again this year. He's been meeting after school one day a week with the group since the first of the year. It brought so much joy to my heart to see him happy and up there with everyone else. Knowing how important this is to him and how hard he's had to work to get here makes it that much more special. Is he at the same place he was last year before his stroke? No. But he gave it 110% and did amazing. He even got a little solo which of course made me cry (it's at about 1:15 in the video). So, so proud of him. Here is a clip from the performance. In the first part of the video, Jake is the red group, last one on the right. http://youtu.be/aUPqHyKkboY

Another big development is Jake is starting to realize when his body isn't working quite like it needs to and is making choices that can help him. He's had a bit of a head cold this past week which caused his left side to be tighter and his walk got a little worse. We've been told it's very normal for stroke patients to regress when they are sick. His body just doesn't have enough resources for normal functioning, brain healing and fighting off a cold. Something has to give and unfortunately, it's the physical side for him. He  decided it would be a good idea to use the walker again at school so he didn't get too tired. For his percussion performance, he asked to use the wrist brace that was made for him in the hospital and have his stick wrapped to his left hand since his grip wasn't as strong. This awareness and him deciding what will help him is huge progress.

Strike Out Stroke

We got some really exciting news this week! Jake has been nominated to be recognized at the Strike Out Stroke Colorado Rockies game on May 17th. All the Denver area hospitals were asked to pick a couple of their stroke patients to be considered. We're told that those chosen will get to go onto the field before the game, five will have their stroke stories read at the game, and one will get to throw out the first pitch. Jake was so excited when we told him and we were really honored Children's Hospital chose Jake as one of their nominees. Of course as with many things in our life, we have a scheduling conflict. Our school's annual auction is the same evening and they both start at the same time. Go figure. We talked about it and decided going to the game is more important. While we are big supporters of the school and hate to miss the auction, this is one of those things that only happens once. We should find out early next week if he is chosen, keep your fingers crossed.

Other than that, it was a pretty mellow week. Jake had a routine MRI on Wednesday and we'll get the results on Tuesday when we go to see his stroke doctor. He got around great at school all last week and his stamina is holding up well being there all day. We are noticing that with the longer school days, come 8:00 pm, he is wiped out and asking to go to bed. If only we could get Luke to do the same thing!

Pediatric Stroke Awareness Month

Jake's walking is slowly getting back to "normal." We got rid of the arm crutch last Wednesday. He was leaning on it way too much and putting even less weight on his left foot and it was making his form much worse. At PT Wednesday, his therapist had him start using a walker pretty much full-time so he would have equal support on both sides. He wasn't very happy about it and said to me "I'm not a 90 year old," but his walking looked so much better with it. I felt so bad for him having to take it to school, but he did it. By Friday afternoon when he got off the bus and walked to the car without the walker, he was looking much more even instead of the step/hop gait he'd had most of the week when he had no assistance.

The other big development this week was coming to the decision with his therapists we aren't going to do this round of Botox. He was due for his three month treatment this week and despite all the gait issues, everyone feels his muscle tone is doing ok. We're going to give it some time to see if he can keep working through it without the Botox. Botox essentially numbs the muscle so it can relax and while it definitely serves a short-term purpose, it makes it hard to retrain the muscles to relax on their own. It's also not something we want to use as a long-term treatment. 

Pediatric Stroke Awareness Month
May is Stroke Awareness Month as well as more specifically, Pediatric Stroke Awareness Month. In light of all that has happened this past 11 months, I wanted to share some of the things I've learned. To be honest, it's far more than I ever wanted to know and I'm surprised how little I knew before Jake's stroke. I honestly didn't know children could even have a stroke. Anyone I knew who had one was much older or had heart disease. I also didn't know that babies, even unborn, could have a stroke. Tough way to have to find out about these things.

• Pediatric stroke affects 25 in 100,000 newborns ((pre-birth - 30 days old) and 6 in 100,000 children under 15 years of age.
• 60% of strokes occur in boys.
• Stroke is the sixth leading cause of death in children. 
• Recognition of stroke is often delayed or even missed in most children.

Types of stroke

• Ischcemic stroke - brain injury caused by blockage of blood flow in an artery caused by a blood clot or narrowing of the artery. (most common type of stroke)
• Intracranial hemorrhage - Bleeding in the brain that leads to brain injury. Arteries and other small blood vessels create pathways throughout the brain that bring blood from the heart. If these arteries or blood vessels weaken and burst, they can cause a hemorrhagic stroke. (This is what Jake had)

Symptoms

In Newborns and Infants:

- seizures

- extreme sleepiness

-  tendency to use only one side of their body

In Children & Teens:

  Remember F.A.S.T.

-  Face drooping

-  Arm weakness

-  Speech difficulty

-  Time to call 9-1-1

 Other signs:

-  severe headache, vomiting, sleepiness, dizziness & coordination problems

Possible Effect of Stroke

Each person experiences stroke differently, but typically, children experience the same effects as adults do. The most common effects are:

• Hemiparesis, or weakness on one side of the body
• Hemiplegia, or paralysis on one side of the body
• One-sided neglect, or ignoring the weaker side
• Aphasia, or difficulty with speech and language
• Dysphagia, or trouble swallowing
• Vision problems
• Changes in mood
• Cognitive changes, or problems with memory, judgment and problem solving
• Behavior or personality changes

We'll be wearing purple in honor of International Pediatric Stroke Awareness Week which is May 3-9. If just one person learns something that can help get a child early treatment, that's a win in my book.