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.

We Don't Know Why

It's been an interesting week to say the least. Jake started out walking so well and was so excited to get back to school on Monday. He's getting really close to being in school full days with the exception of a few appointments/therapies here and there. It's crazy to look back to August and September when he only had the stamina to go about 3 hours a day. He's really make huge strides in this part of his recovery.

Monday was a good day and several people noticed and commented how well he was walking. After the casting and how well he did last week in Mexico, I really felt he had turned a corner. On Tuesday when I picked him up from school, I noticed that his walking was a little more labored and figured he must have just been a little tired. He had PT on Wednesday morning and the entire session was used to work on his walking. He seemed to be doing a little better when we left, but on Wednesday afternoon I got a call from the school. They told me his walking had really deteriorated and they wanted him to ride the adaptive bike for the rest of the day due to his safety and fatigue. I couldn't believe what bad shape he was in when I picked him up from the bus. He was back to the step with the left, hop forward with the right. We were at a complete loss as to what was going on. Several theories were being tossed around. Was it the lower altitude being at sea level that made he walk so much better? Was is the fact that we were on vacation and his brain wasn't being as taxed? Was it just being in a different environment where he didn't think about it? We really don't know why he has regressed again and that is what is so hard. He's had so many rounds of improving then regressing, you would think I would be better prepared but I'm not. And this particular time, Jake is painfully aware of the difference. He's asked several times this week, "Mom, what happened to my walk? Why can't I walk like I did in Mexico?" It breaks my heart to tell him I don't know. We're trying really hard not to make a big deal about it so he doesn't get obsessed about it and thing about it too much. We did tell him he knows what that felt like and he knows his body is capable of it and that's a good thing.

He had PT again on Friday and I talked to her about all my different theories. She has heard similar stories from other patients when going to a lower altitude (four different people I talked to this week said the same thing). She also said it's possible that he's using his brain so much more now that he's home he's just more fatigued. Bottom line, she doesn't know why either. He did a great job on his exercises and all the mechanics are there, so it really makes no sense. She sent him home with an arm crutch which is helping him get a more even stride and allowing him to get around better on his own. However, watching him over the weekend, we're concerned he's leaning to heavily on it which is causing him to lean more to the right when he walks, so he's putting even less weight on the left leg.

We're really hoping and praying things continue to improve this week and we'll just keep taking it one day at a time.

Vacation

We are so glad we went ahead and went on vacation, I'd have to say it was a success! It's always bittersweet to come home...we're anxious to have the comfort of sleeping in our own beds and getting back to eating a normal amount of food, but hate to leave the warm weather, relaxation and lack of commitments. Add to that, we are coming back to snow, no fun!  I'm taking advantage of the plane ride home to write the blog since we'll be jumping back into our crazy schedule with both feet as soon as we get home.

We've discovered a few things that we hadn't factored in, but overall everyone had a good time. It was definitely more mellow with fewer outings than years past, but that was ok and I think it's what we all needed (especially since I got a head cold the second day we were there). Jake wasn't as active or adventurous as Luke, but we didn't expect him to be. We realized right away that we had to really monitor Jake's activity level since just walking around in the pool or playing in the wave pool took way more energy than it did for anyone else. The first morning we were there, he went out in the wave pool with Luke, Todd, and my brother Ryan. After about 30-40 minutes, he was wiped while Luke lasted another couple of hours. Wearing the scuba boot over his old brace worked really well and gave him the support he needed for his leg in the water.

We had purposely not planned much and intended to just take things as they came, but discovered that Jake needed the routine of knowing "what was going on when" and struggled without it. Needing to know his schedule was one of the affects of his stroke that started back in the hospital.  We do a pretty good job of it at home but our vacations are usually on a much looser timeline, so we had to make some adjustments.   Our first day when we said we were staying at the pool until about 3:00 and it got to be 3:15-3:30, he was constantly looking at his watch and telling us what time it was.  To help him become a little more flexible, we gave him the list of things we'd be doing that day with ranges of times.  That worked out well  and  was an easy accommodation to makes things easier for him.

We all loved floating around the lazy river, even my Dad who had rotator cuff surgery a month ago. Jake was a little hesitant the first time around, so Todd and I took turns walking with him while he floated in the inner tube. Within a few days, he was floating independently and asking to go.

One of my biggest concerns was the beach.  In the past Jake has always loved morning walks along the sand and playing in the surf.  This resort is huge with very lush vegetation and several pools, so the beach wasn't "right there" in view so our usual daily activities never came up.  The one day that we decided to venture down to the beach, Jake got into the water a little but mainly just had fun building a sand castle and helping Todd dig a big hole to bury Luke.

We were so glad we decided to bring Jake's wheelchair. There was a TON of walking around the resort and there are all these cool elevated walkways, so it made getting around a lot easier. It also allowed us to get off the property and walk 15-20 minutes to dinner which would have been impossible without his chair. Surprisingly for as much as he rode, his walking really improved over the week. We were at a Mexican Fiesta on the beach and he needed to go to the bathroom. It was too hard to push the chair through the sand so we helped him walk. As soon as we got to the sidewalk, he just took off, walking better than we've seen him in a really long time. It was so great to see.

The other thing we discovered was how dependent Jake was on Todd and I. Both my parents and my brother/his wife offered to take him to do something, even if it was just get into the pool right in front of us, but he preferred to stay where we were. It was more apparent than it's been at home but we figured it had a lot to do with being out of our regular surroundings and routine. He got a little better about it later in the week, but it wasn't something we had anticipated.

Our trip ended with an hour flight delay, so we spent a little more time in the airport than we would

have liked. We got a nice surprise when we got on the plane though. A friend of ours is a pilot for Frontier and knew what flight we were on. He had contacted the pilot who came out and said hello, welcomed the boys over the PA system, and invited them up to see the cockpit. They thought that was pretty cool.

It was wonderful to spend a week together with some good quality family time, lots of laughs, and enjoying the sun. Yes, it looked a little different than years past, but that's ok, we are a little different.

Should We or Shouldn't We

Back at the end of October, I was feeling antsy for a vacation. I went online and found some great priced tickets to Puerto Vallarta during Spring Break. Todd and I talked about it and decided to go ahead and book it. After all, at the time it was over five months away and we were sure Jake was going to be doing so much better by then. I think our desire to get away was overruling our ability to really look at the reality of the situation. Just to be safe, we upgraded to fully refundable tickets. (Trip insurance doesn't cover cancellation due to a pre-existing condition.)

When February rolled around, Todd and I started talking about whether or not the trip was going to be a good idea. I think it had been gnawing at each of us for awhile and we just didn't want to confront our concerns. Jake hadn't progressed as much as we thought he would have by then and he was having a lot of issues with his walking. We talked about our what our normal vacation days in Mexico look like and tried to figure out how everything would work. One of our favorite things to do is get up early and take a long walk on the beach. The boys are usually in and out of the water and running ahead. Current reality: leg braces aren't very conducive to walking in the sand. We spend a good portion of the day at the pool or beach and the boys are in and out of the water all day long. The resort we are going to is also huge and requires a ton of walking. Current reality: Jake's body doesn't remember how to swim. He can't walk along the pool deck or get into the pool without his brace because his left leg isn't strong enough yet. Later afternoon, we usually head into town for dinner, shopping and do more walking. Current reality: Jake can't walk as far as he used to because he gets tired more quickly.

Our gut was telling us there was a real risk of the trip doing more harm than good. We go on one main vacation a year and didn't want it to be frustrating and emotional for Jake (and also Luke for that matter) because the trip would be vastly different than in years past. At the same time, both boys have been really excited about going and we all could really use a week away. So we were faced with the decision to either cancel the trip and disappoint the boys or go as planned. We wrestled back and forth most of February trying to decide the best thing to do. The one thing we agreed on completely was if we decided not to go, we wouldn't tell the boys it was because Jake isn't as far along in his recovery as we thought he'd be. We didn't want him to feel bad or for Luke have any resentment.

We started trying to come up with ways around some of the obstacles....we could take his wheel chair for some of the distance walking; one of us could be help him in the pool; Todd could carry him across the loose sand down to the more packed sand and we'd just take shorter walks; we could see if there is waterproof/sandproof sock we could put over the brace. The big issue in February was his brace, he only has one and getting it wet wasn't really a very good idea. I talked with his PT's to see if they had any suggestions but we didn't get very far.

Towards the end of February, Jake started his casting and it was decided he would be getting a new brace. Not only should it help with his walking, we'd also have a backup brace he could wear in the pool! The sand was still an issue, but maybe we just spend less time at the beach.

Going through this painstaking process, we've come to the realization that things are what they are, they are different than they used to be (at least for now) and we just need to accept that and move forward with our vacation plans. We'll do the best we can to plan accordingly and try to make things as easy on Jake as possible, but there is no way we can shield him from everything (nor should we). We figured in his excitement to go on the trip, he was likely not thinking ahead as to what the challenges would be, so we sat down with the boys about a month ago to talk about it. As expected, Jake got a little emotional and was worried he was going to ruin the trip for the rest of the us and was sad he wasn't going to be able to do all the things he was used to. As a family, we decided the good reasons to go outweighed the challenges and we are viewing it as an opportunity to get away from work, school, appointments, etc. and enjoy some quality time together in the sun.

Rewind to a week ago, Jake got his cast off and is wearing his new brace which has added another set of obstacles. As you may have read on last week's blog, he is having to readjust to walking without the cast and is having a tough time. He's been working really hard and it's slowly getting better, but he still isn't walking as well as he did before we started the casting. So we'll probably move a little slower and use the wheelchair a little bit more, but that's ok. It's where we are now and we'll deal with it. Very much looking forward to a week away!