Preschool Updates

This year was a big one for "back to school" around our house - Audrey started Kindergarten and Adam started 3 year old preschool! Of course I intended to post much closer to the start of the school year, but as always time flies and somehow it's almost time for Halloween!

Adam is attending the same preschool as his big sister and couldn't wait to start the year. He was a little hesitant about transitioning to a new daycare earlier in the year, so I wasn't sure what to expect, but he has done just great. He's now in a preschool setting one day a week for daycare and then twice a week at the private preschool. It has been so amazing to see how quickly he's turning into one of the "big kids"!

Physically, Adam continues to do very well. At this point we do very limited "therapy" activities at home, and really just try to encourage symmetry in his every day activities or present play situations that encourage him to use/strengthen his right hand. These days that looks like anything from squeezing clothespins and chip clips, using squirt guns with a lever action to make him use his whole hand, legos, connect four, catching bouncy balls ... the list goes on! He loves helping in the kitchen, so I can almost always get good work in on the right side by letting him help prepare meals, set the table etc. Basically anything he's interested in playing with we just encourage him to use both hands together or to at least try manipulation with his right hand. There are definitely time's he's more agreeable to this than others, but we haven't had to use any CIMT strategies or handsplints to help recently. As for his leg,running around on level surfaces there really isn't any difference left to right. When it comes to climbing or stepping up a big step he still shows a slight preference for using his left leg as his stabilizing or "stepping up" leg, but this doesn't keep him from using stairs using a reciprocal or "every other" pattern, climbing EVERYTHING at the playground and trying to jump on or off anything he can find. He's riding a two wheeler with training wheels and has gotten much better at his little Razor scooter. I definitely have to keep my eye on him because he's absolutely convinced he can hang with the big kids in just about everything!

Adam continues to show good progress related to speech and cognitive development as well. He has age appropriate speech patterns - which means that although he's still working on S-blends, giving us "Fiderman" instead of "Spiderman" for Halloween, most of his words are intelligible to unfamiliar listeners. In fact, Adam has become quite social and often slows me down in the grocery store befriending random ladies in the aisle to tell them about his love of dinosaurs, preschool and brag about pooping in the potty!! It's hysterical and I love every minute. Speaking of which, HE'S POTTY TRAINED! That happened over the summer and although as noted above poop took a little longer, he's doing great now. This means he was able to start school this year and is loving being part of a class. According to his teacher he's doing really well and we see a lot of new skills already at home. He's counting higher (mid-teens consistently), knows his shapes, colors, is interested in letter recognition but not accurate, able to recognize his name/his sister's from a group and is now writing A's, M's, H's and O's ... with both hands!! Although he definitely shows a preference for writing with his left when using pencil or crayons, he often times draws with chalk or colors with his right. We continue to watch his cognitive development closely and as he starts this new stage of preschool to grade school it is definitely on my short list of things that I'm learning more about to be prepared to help support his learning.

Here are a few pics of our little guy in action:

Turning 3 with his excavator cake

Climbing on everything!

Painted his face himself

First day of swim lessons

This boy loves construction equipment

So far Adam throws lefty and bats righty ... guess we'll see!

A little blurry, but my baby picked up his sign with his right hand all on his own. One of those moments that caught me off guard and brought me to tears. So grateful that my little boy is so happy and has the opportunity to experience everything I could hope for him at this age!

Update on Adam's Progress

So after a long break from posting I'm happy to give an update on Adam's progress. He is now 2 1/2 years old and progressing typically in every way. In November he had what will hopefully be his last routine visit with his pediatric neurologist. After a thorough physical exam and extensive questions to rule out any possible seizure activity, the doctor felt that Adam is doing very well, that his physical impairments are very mild and being addressed through therapeutic activity at home. He recommended that Adam did not need to continue routine visits, but that we would consult as needed if there are any future concerns regarding possible seizure activity or higher learning activities in school. We plan for Adam to start regular preschool when he turns 3.

Here's a run down of where Adam is at with regards to his development:

Walking/Gross motor/Play - Adam started taking steps at 11 months and really started walking on his actual birthday. Although we initially noticed more posturing in his right arm while he adjusted to walking this lessened overtime and rarely happens now. We are relieved that there was no difference in his legs or feet as he has learned to walk, run, climb stairs and jump. Adam can now ride a 3 wheel scooter (pushing with his right leg!) and although he CAN pedal a tricycle a little bit he finds it much faster to scoot along with his feet. He climbs ladders, slides and on top of tables easily; jumps on/off and over things and has good balance/coordination in all of his play activities.

Fine Motor - Once Adam got the hang of walking we started an intensive program of constraint induced movement therapy. We consulted with our pediatric OT (often through use of video and less frequently in person) to develop and modify our program. Adam wore a mitt on his left hand 4-6 hours a day on most days to help him develop his motor skills on the right side as well as address an ever increasing preference for using his left hand. It was truly amazing to see how the quality of his movement in the right arm, grasping skills and frequency of initiating use of the right arm improved with the constraint induced program. After about 3-4 months we began to wean time in the mitt and emphasized skills that required him to use both hands together. We saw a significant improvement in the frequency with which he would spontaneously choose to use his right hand for a task such as playing or eating but he then required cues to start to use both hand together to complete the more complex tasks required of a toddler. After discontinuing use of the mitt for about 3 months we began to introduce it again on a limited basis to emphasize new skills such as drawing and in-hand object manipulation. We also briefly utilized a custom hand splint during these activities to help improve Adam's finger position during grasping. Specifically it allowed him to strengthen his lumbrical grasp, essentially allowing him to better use his whole hand during activities.            

 Just to give you a picture of where Adam is at now, if you watched him play not knowing that he had a stroke you would probably not notice anything atypical about the way he uses his right arm/hand. If you watched very closely you would see that he still demonstrates a preference for use of the left side and that his movements are smoother/more coordinated with that hand. Despite this Adam can pick up a grain of rice with his right hand, he will sometimes use a spoon with his right hand instead of his left and if a task is difficult for him to do with his left hand he will then try it with his right - something I wasn't sure we would ever see! He loves to color using both hands, cuts using scissors with his right and is able to put caps on/off markers using both sides. He can manipulate puzzle pieces, legos and shape sorters using his right hand, turns pages in books, drives his cars all over the house and will use both hands for dressing (taking socks/hats off, jackets etc). These days we spend much less time on specific therapy activities and try to focus his play activities on tasks that will encourage use of both hands together (playdough, building blocks/legos, stringing beads etc) or specific strengthening/fine motor control on the right (helping with cooking by placing all the ingredients to the right/overhead/strategically placing bowls/utensils, cutting with scissors, coloring, squirt guns/squeeze toys etc).

Adam enjoying his Elmo cake on his 2nd birthday

Adam using his hand splint while coloring

Speech/Cognitive - Adam's language development has always stayed right on track. We have touched base often with my co-worker who is a pediatric speech therapist and although he has never needed speech therapy she has been a great resource on strategies to encourage typical language development. He is now using full sentences with a vocabulary that seems to be expanding by the day. I am often amazed at the detail and thought behind what comes out of his mouth these days! He loves to describe what he sees going on, tell us about events in his day and is now recalling more of what has happened in the past. He has good articulation and people generally understand him well even outside our friends and family. He loves to "read" books on his own and listen to stories read to him. He can now not just identify what is on the page, but will tell you what characters are feeling and why or start to predict what might happen next. He can consistently count objects up to 10 well and is starting to count out loud to 20 ... with a lot of number skipping :).

Following the diagnosis of stroke there is so much uncertainty. I can't express how grateful we were for stories that parents shared about their children's growth and success. Knowing that there was a possibility for Adam to have functional use of his right hand ... to run, walk and play with his peers ... to learn, grow and lead a healthy, happy life ... this is what we clung to. It was motivation even on the difficult days to seek out new therapy strategies, to practice our home exercise program activities (even the boring ones...even with the tantrums!) and to adapt Adam's daily routine to give him the best opportunity for development. We still have a lot of work ahead of us, but it felt important to share Adam's story so that others headed down this same road may find the same comfort and hope that we did. 

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 :)