May is Pediatric Stroke Awareness Month!

May is  here and brings with it Pediatric Stroke Awareness Month! With Adam's first birthday coming up soon as well it seems like an appropriate time for me to reflect on our experience this last year, how far Adam has come and how I can contribute to raise awareness about pediatric stroke this month.

There are limited resources for families of children diagnosed with stroke or hemiplegia, but one that Dave and I have found very helpful has been CHASA: Children's Hemiplegia and Stroke Association. Their website www.chasa.org has provided us with information, resources and support that would otherwise have been difficult to find. The organization offers services to pediatric stroke survivors and their families through grant programs, sholarships, research opportunities and support communities. In the month of May they use the phrase "Streak for Pediatric Stroke" to encourage families to commit to doing something through out the month to honor our tough little kiddos and to raise awareness about their diagnosis. Its an individual commitment - anything from trying to do one task a day using only one hand, wearing purple clothes/hair/bracelets/etc, doing something everyday that is challenging, or sharing information about stroke with others...you get the idea.

Dave and I have given some thought to how we would like to participate and am excited at some of the ideas we have come up with to help raise awareness about pedatric stroke this month!

*My Streak - Running/strength training everyday in May! Running has been an important part of my life and something that I have struggled to make time for since having Adam. When I thought about what I wanted to do this month I considered what I ask Adam to do everyday - things that are challenging, frustrating and not necessarily what he feels like doing at that particular moment, all with the hope that these will be a small steps towards reaching his full potential in life. For me, running is literally taking those first small steps towards being the mom I want to be for him. I know that I'm the best version of myself when I have balance in my life and running has been a huge part of that. Since I'm pretty sure running 31 consecutive days would lead to injury,  I'm throwing in strengthening, something I need but is not my favorite thing to do. I don't look forward to the challenge of fitting it into our daily schedule, which will no doubt include early mornings and miles behind the double jogger, but I am excited about choosing to do something that will bring a positive change to our lives even after May is over.

*Bracelets - We ordered purple bracelets scheduled for delivery next week with Adam's name and the awareness ribbon. We will be handing them out to our family, friends and co-workers along with a fact sheet about pediatric stroke. Our hope is that people will wear them as a way to not only recognize Adam and all the other pediatric stroke survivors, but to help spark conversation about stroke and share information about the diagnosis.

*Bulletin board at work - In my clinic we have a bulletin board that we use to share information with families and patients in the clinic. This month I'll be using it to post information about pediatric stroke. As part of the board I'll be posting a picture of some of our pediatric stroke survivors, supplied by their parents, as well as a few words about each child. This may also lead to sharing our story at the main hospital as well, but those details have yet to be worked out.

*Purple! - Audrey and I will be sporting purple all month! Nails, clothes, hair ribbons...we're looking forward to getting creative :)

I'll be excited to share updates this month,  in the mean time here's what my little guy has been up to lately:

Most parents would see this and start thinking about childproofing, I was so excited to see him trying to reach it with his right hand!
 ... And then I started thinking about childproofing :)

Loves his push toy!
Walking all over the house with it now. 

Cruising along

Everything is a push toy these days,  the slide,  stools,  boxes of diapers... 

Oh and apparently we have a climber!
He's managed the slide,  picnic table, stairs every time I look away,
 and even onto a toy stroller... This could get interesting :)

Hiding my crazy...

That's what I used to call it when Adam was first born. "It" being the process of trying my hardest to pull it together during the random moments through out the day where I was having an internal meltdown at a place or time when it was really not appropriate to let that happen. Sometimes it was a doctor's visit, sometimes it was just changing a diaper in the middle of the day with my daughter in the room...and sometimes, the crazy got out anyway.

I am thinking about this today because I did something this week that I have contemplated for the last 9 months. I requested and picked up all of Adam's medical records from his birth and hospitalization in the NICU, including his imaging. I decided to do this because during the week I was reading a research study that referenced outcomes based on very specific locations in the brain affected by stroke and I had to pull out one of the reports we were given at discharge to reference. Looking over what we had I realized that there may be instances in the future where we want his complete records, whether for our own information, changing doctors or participation in research, and I would much rather get them at our convenience (and for free since we're hospital employees) than scramble for them later. That being said I had a little hesitation about revisiting all of that information.

The first and last time I saw Adam's stroke on imaging he was less than a day old. The second before the doctor pulled up his CT scan on the screen was the very last second where I could think that maybe, somehow, someway there had been a mistake. Maybe it isn't as bad as he's making it sound, or maybe there is some other explaination. When I looked up, any doubt was gone. As much as I knew that I needed that visual confirmation in order to move forward, I was shocked. That image has lingered all this time and part of me was afraid of how it would feel to look at the real thing again. I waited a whole day (which seemed like a long time) before I started with the paper records. I read every page before I felt ready to pull out that disc. As I clicked through the images the pit that had been forming in my stomach started to go away. I found myself noticing things I had never thought to look for on a CT or MRA like Adam's little conehead, his tooth buds and his cute nose. I saw the stroke, but I saw everything else too. It really hit me how much this parallels my experience as Adam's mom. I see his stroke everyday, maybe I always will, but the more days that pass the better I get at seeing everything else too.

At the end of the day I am glad that I brought these records home. I don't know why, but it was important to me to face my fear of going back over it all. I've done it now. I've read through accounts of every seizure, every dose of medication, every test and feeding. I did it without slipping back into those moments myself. I'd like to think this time I'm not just "hiding my crazy", maybe I'm finally getting to a place where I can leave those memories where they belong, in our past. The records will go sit in the office now, to get dusty in a file cabinet and that's just fine by me. I'm walking away from today with a sense of pride to look at what Adam has already overcome in his short life and so much gratitude for the strength that God has given him.

So far so good with the Benik

We've had a chance to try out Adam's new Benik splint and I'm happy to say it has been going quite well. Although he's always shown a tendency to keep his thumb in on the right more than left, he absolutely hates  any sort of hand over hand help or repositioning of either hand so I've just been forced to kind of let it play out. While we initially started using the Benik splint to help him when he's pinching small things, I experimented with putting it on during unstructured play. I'll put it on for about a half hour and just let him crawl around all over playing with whatever he likes. When I take it off I notice that he opens his hand much wider when he's crawling or reaching. I have also tried a couple of times putting it on while he's in the carseat, to keep him from just resting with his right hand in the "OK" position. We don't keep it on all the time because it does slightly restrict his motion for grasping and limits sensory input to the hand, but I'm hoping this limited use will help keep him comfortable with his thumb out so he can continue to develop strength in his hand using that postion.

Excited to steal some of his sister's toys

Open hand and reaching into a container which is still a challenge these days

Weightbearing on an open hand with thumb out
(note the trail of destruction!)

Poking with his right index finger!

9 months

The weeks and months seem to be flying by. Adam turned 9 months old last week and I am still somewhat in disbelief. I find myself just stepping back to watch him play, explore and interact with our family... I have no idea where the time has gone. What happened to the little bundle we brought home last June? I am trying my best to savor every last cuddle, but the moments just keep ticking by.

These days Adam is crawling all over and doing his best to get his hands on everything I'd rather him not. He loves all his big sister's toys and thoroughly enjoys "wrestling" with her. He's pulling himself to stand on the furniture and is starting to try to take steps along it. The day he turned 9 months he crawled up five stairs by himself for the first time.

Overall, Adam continues to use his right hand very well, but does demonstrate some atypical patterns and shows a preference for using his left hand. He is able to poke with his index finger and has good active supination (turning his palm up) on both sides. He has started to consistently use an inferior pincer grasp on the left, meaning he is able to pick up pieces of food between the pads of his thumb and index finger, but when he tries on the right his thumb sometimes stays tucked in. We've noticed this as well when he crawls on certain surfaces, like carpet as opposed to the hardwood, or when the hand is at rest.

Hanging out in the cart you can see how he holds his right index finger and thumb together

Good overhead reaching! 

Adam has done so well with his occupational therapy that we have decreased the frequency to once a month, or as needed. Over the last month I have continued to implement the strategies his therapist and I had developed to encourage Adam to use good quality of motion with his right arm, but since he has recently started the new skill of trying to pinch I was excited for our visit today. His therapist trialed a small neoprene Benik thumb splint to help him keep his thumb out while he's trying to pick up small objects. Crazily he fit into the size brace for a 2 year old with only a little trimming to the thumb length! It was the perfect amount of support to keep him from tucking his thumb towards his palm when he tries to pinch and he was able to pick up the pieces of food perfectly. He also showed better hand placement while crawling, so we're excited to start incorporating that into some feeding and play time.

Impatiently waiting for lunch with his new splint

It's odd because most of the time I feel so far removed from those first days when Adam was first diagnosed. Our days are filled with the routine of little ones - endless cycles of naps, diapers, feedings, playtime and laundry...the list could go on and on. It seems surreal that this baby I am caring for could have had such a major neurological event. I look at him going about his baby business, completely unaware that anything is out of the norm, and wish I could do the same.

One issue I have had is accepting the fact that just because Adam had a stroke doesn't mean he gets a free pass on all the other stuff that goes along with being a baby. He has had colds, fevers, thrown up and started teething. Although not fun, these things are just par for the course in the first year. My challenge has been separating each event with his stroke. Now I don't mean this to sound like I freak out every time he sneezes, but I will freely admit I give him Tylenol for a 99.5 fever at bedtime that I never would have medicated for Audrey. Even though I have been reassured he is no more at risk for a febrile seizure than any other child, I worry. The one time he threw up my mind went racing to whether he had any sign of a change in neurological status before I finally accepted that he just had an upset stomach. I watch him relentlessly for any sign that his seizure activity is returning and an unexpected startle or twitch is enough to put me on edge.

I just haven't quite figured out how to let go of the fear that the moment is coming when things will start going wrong. I am thankful for every day that passes without a seizure, with more vocalization and better use of his right hand, but part of me struggles with the idea that there is no guarantee things will continue on this course. In one sense I recognize that this isn't rational, none of us have any guarantee on what our future holds, but knowing the list of things Adam is at "increased risk" to experience gives me something quite specific to be worried about.

My goal is to find some balance - being sensitive to his deficits so that I can provide him with every opportunity to progress, without giving in to unproductive worrying. I have a feeling he will be an excellent role model for me, as children often are, and if I just allow myself to join him in taking each moment as it comes we'll both do just fine no matter what comes our way.

On the move...

Coincidence or not, 4 days after we built Adam's crawling track he began to initiate crawling on his own! I had picked the kids up from daycare, they both fell asleep on the car ride home and were wide awake as soon as we walked in the door. Adam was particularly fired up and a few minutes later he was trying to crawl after a toy.

I will admit that those first attempts were bittersweet for me and the tears in my eyes were not completely tears of joy. I was thrilled to see him start to move and excited at how well he was using his arms, however his right leg was not exactly going along with the program. The first time he crawled he made it about 4 feet on the hardwood floor and his right leg stayed completely flexed underneath him causing him to basically just drag it along. Even though rationally I  knew to expect some issues as he mastered this skill seeing it right in front of me was much harder than I had anticipated. I realized that although he'd displayed equally atypical patterns with his right arm, the movements were smaller and because he has always had good trunk control they had less visual impact. On the other hand, the leg is responsible for big movements and asymmetry is much more apparent.

Luckily Adam did not share any of my anxiety about what this might mean for his gross motor development. He is the happiest I've seen him now that he can start to move himself around the room and explore. His crawling pattern has literally improved by the day and within a couple of weeks he was racing around and crawling over obstacles with a completely normal pattern. I occassionally see his right hand rotate in a little more than the left, but I am being really picky with that. In comparison to how my daughter crawled (who had no neurological involvement and very advanced gross motor skills) he actually has much fewer quirks!

Seeing how quickly he has progressed is nothing short of amazing to me. I cannot even begin to comprehend the way his little brain is re-wiring. There is such a mismatch between the stroke I saw on his imaging and what I watch him do everyday... I am so thankful for that.

Here are a couple of videos, the first is a few days after he started crawling and the second about a week and half:

 

Crawling Track

At 7 months old Adam is well within a normal age range for learning to crawl, however he has been up on hands and knees for a couple of months so Dave and I decided to try a little project to help him on his way. We had read about crawling tracks on other blogs and decided to make our own.

I'll say its really very simple to make, but also have to add that Dave did most of the work! I was responsible for the padding, but that's about it. After we assembled the supplies it was finished during the kids afternoon nap, so not more than about 2 hours.

Here's the process:

 

We used 2 random MDF boards because we happened to have them in the basement. Dave made two cuts - the first to get a 14 inch base from the one board, and the other board he cut in half for the sides. I think they were about 50 inches long.
We used six "L" brackets to secure the boards in place.

I am extra cautions about corners/edges and the prominent brackets so I used a fleece blanket on the base and fleece remnants from around the house to add extra padding to those areas. I just secured it with duct tape to limit the number of staples. Then we used an egg crate mattress pad from Walmart (full size, about 11 dollars) with the flat side up to fully pad the track. Dave used the staple gun to secure it to the base and wrapped it up over the top.

Then we added a vinyl table cloth (Walmart about 5 dollars) as the cover. The fleece underside stuck well to the foam so we only had to staple it down on the bottom and outside of the track. No staples on the crawling surfaces.
Here is Adam on his first trial run!

We experimented with propping it up at different angles to find one that gave him enough of a forward weight shift without making him too hesitant to move forward.

It took a few days before he really moved down the track without encouragement and lets be clear it was not using a crawling pattern just yet!
He used a combo of advancing arms or legs and then going to his belly and army crawling.
It did help him start moving forward though and 4 days after we built it we saw
his first real attempts at crawling on the floor!

I refuse to have anything this big in my house that only serves one purpose and as a therapist I like that this can be used for kneeling and pulling to stand when its flat.

Adam seems to like it as well :)

 

Milestones in review...

TUMMY TIME

 

As a pediatric physical therapist both of my children have suffered through ridiculous amounts of tummy time. Adam's tummy time started in the hospital and continues today in the form of lots of time on hands and knees. Here are some pictures of lots of time spent on his tummy and weighbearing through his arms. We were thrilled to see him develop good head control with midline positioning in prone extension. Over time his skills progressed from weight bearing on his forearms to his hands. When he first made the transition we would see his right arm fatigue faster than his left, but like everything he has done so far with some practice he is now able to bear weight symmetrically on both arms.

 

 

 

 

  

Sometimes we just have fun :)

Audrey started to add her own little challenges like piling up her toys on Adam's back

Up on hands at knees at 5 1/2 months old

 

SITTING

 

Adam starting sitting independently one week shy of 5 months.

Here are some pics of his road to get there!

Most of his practice came sitting on the floor with Dave and I, but for pictures the bumbo worked well. Complete with big sister making him work just a little harder!

As he started to sit on his own and reach for toys we used a Boppy pillow behind him while we waited for those nice balance reactions to develop.

All by myself!



At 7 months Adam has symmetrical balance reactions most of the time (slightly less on the right when he's tired). He can reach for toys in any direction and crosses midline with both hands without losing his balance.

Midline sitting posture was a great Christmas present for us!

 

REACHING AND GRASPING

 

As I mentioned earlier Adam begain batting at objects about a week or so before he was 3 months old. Ironically the first time I saw him do it he used his right hand! However, the more he used his hands the more we noticed him having some difficulty coming out of a flexed position on his right side. We began occupational therapy and have worked on opening his hand with his thumb out during reaching and weightbearing, facilitating supination (turning his palm up), reaching with an extended elbow and crossing midline. A trend we notice is that the tone/atypical patterns we see in his right arm are to be more noticable when he is first learning a new skill whether that be reaching, sitting, hands/knees or now crawling/standing. After a couple of weeks of mastering that skill he will look totally symmetrical again. This cycle has continued with each new skill so I try hard not to freak out too much when those asymmetries arise...sometimes days I do better at that than others :).

 

I am happy to say that at this point in time Adam demonstrates age appropriate fine motor and visual motor skills on his right side. At his six month re-assessment in OT he had skills advanced for his age. Again, our concern at this point is now more for quality as well as continuing to progress his skills.

 

Some of the strategies we have used at home include lots of weightbearing through hands, tactile stimulation on the right side, exposure to varied textures in his right hand, modified constraint induced activities, dynamic splinting to encourage active supination and LOTS of repetition reaching in a varied of planes and positions.

 

Here is our little guy at work over the months:

 

First reaching - we gave him easy things to hold on to just to get
him used to using his right hand

Reaching against gravity

We used this to get him weight shifting onto his right to help strengthen while he reached with his left. Then we'd switch it to the other side to practice reaching on the right.

Lots and lots of blocks!

 

Giving him a variety of textures to explore

A little constraint induced time :)

He tolerates it quite well as long as he's not hungry or tired!

My little reindeer using both hands to manipulate toys

Always lots of weightbearing - doing this before we practice fine motor always helps

Happy to see him using both hands even without encouragement when he plays

Learning to clap!
At first he used the left hand to clap on the right and now he claps symmetrically!

Velcro on a cookie sheet from the dollar store - A great way to practice reaching for lots of shapes at different heights (sitting and hands and knees).

 

 

STANDING

 

Between 6 and 7 months Adam was able to consistently hold himself up in standing at a surface. We did all of our standing practice with manual assistance at a support surface and now that we see him standing with good posture he can play in his activity table for a few minutes here and there when I need a minute without him scooting away! We have been working hard on pulling to stand from sitting and kneeling positions. The tone in his right arm makes it difficult to assist him with the motion, but when he grips on his own he can now pull up by himself on your fingers, shirt or small rod. Next step will be larger surfaces like the basket, crib and furniture!

 

The laundry basket is a great place to practice!

Great symmetry, but his sister just yelled "banana!" in his face to try and make him smile...not so much :)

 

My happy little man with an open hand in standing trying to grab my phone!