BENEFITING: CHILDREN'S HEMIPLEGIA AND STROKE ASSN.
May is Pediatric Stroke awareness month. Until 9 months ago when our daughter was first diagnosed, we had no idea that kids, let alone infants could be effected by such a thing as a stroke. Having a daughter who has survived a stroke obviously changed us, it opened our eyes not only to this whole other world that we live in now, but as well to all the things us as parents go through. We are so grateful for that.
Every single child has their own story and deserves that recognition. Whether they were born perfectly healthy or not. Our hope is that by sharing our story that it raises awareness on Pediatric stroke and the CHASA organization. Support is so huge!!
When Addison was first diagnosed with having had an in-utero stroke, there was not a lot of information we could find. Medical Statistics say that 1 in 2800 babies will have a stroke each year. So then why isn’t there more information helping parents along this journey for their children? Usually, everything we read led to a caregiver of an adult stroke. There is a huge difference! Medically and emotionally, the differences are vast. We have found that the area of Pediatric stroke research is severely underfunded!
Our saving grace was coming across the Chasa.org website. The Children’s Hemiplegia and Stroke Association, CHASA, is a nonprofit organization founded in 1996 by parents of children who survived stroke. Since 1996 they have served as a source of help and hope for families of children who have survived an early stroke. CHASA programs directly benefit families like mine by providing online support and information, local groups and a national family retreat, mom weekends, shoe exchange program, college & athletic scholarships, orthotic grants, research funding and awareness initiatives. Finding this group was the very first breath we had taken after Addison’s diagnosis!
Her Story: At around 4 months when babies begin to bat at objects and unclench their fists more, we noticed that Addison was not doing this with her left hand. We mentioned it to her pediatrician and got the “watch and wait.” At 6 months, it became very visible that she had right side preference. So at around 6 months, the journey for diagnosis began.
We’ve had to hold Addison down for a number of tests now. Blood work, x rays, but the scariest of course was her first MRI. When we were brought into the MRI room it was freezing, both me and my husband filled with anxiety just clinging to her. They gave us the option of being with her while they sedated her. Of course we stayed, but we weren’t prepared to hold her down as she screamed and they put this little mask over her face to make her go “night night”. It was absolutely heart wrenching. It was a lot to handle. But, in a matter of hours the whole process was over and we were sent on our way hoping the test would find an answer to our worries.
Waiting on test results is agonizing! Especially when this is the modern era. I have unreal expectations. So after Addison’s first MRI they said they would call with the results as soon as they had them. In my mind, how long could that take? We were taking our first camping trip that weekend when we finally found out and were in and out of service coverage. I remember missing the call from the doctor and she had said in the voicemail that the MRI did indicate an injury resulting from a stroke. Time stood still....
There is a great link on the CHASA.org site specifically for “newly diagnosed”. We’ve gone to it a number of times. It’s the only framework set in writing that gives you some sort of direction. Addison’s neurologist was also great about recommending therapy and where to go from here. We eventually sat down face to face with her to get the full details of Addison’s MRI report. We even got to see all the scans. And the tipping point that we were all going to be ok, was when we could still find humor in all the new darkness. You see, our daughter has some chubby cheeks. We just love them! And on one of her scans you can totally see the outline of those beautiful chubby cheeks. For us, we were no longer seeing a brain injury, we were seeing our beautiful daughter in all this. And that is what matters.
Therapy is key! Right away we plugged into the Early intervention program in our community. Her team first consisted of a speech/feeding therapist (sp), an occupational therapist (ot) and a Physical therapist (pt). Along with our family coordinator (frc) who oversees everything. Over time, these people have become a huge part of our family, they are part of our village, and we just love them.
When Addison started therapy she was 8 months old. She had just rolled over to one side but couldn’t sit unsupported, her core was so weak. Her left hand was completely clenched with her thumb tucked in; a classic trait. She would sit slouched in her highchair and needed a ton of snuggles to avoid meltdowns during therapy. The improvements have been vast since then! The therapists come out once a week, but for us, we make therapy in our home an everyday thing. Addison has gotten very use to it this way.
She just turned 15 months and our newest adventure right now is that she is 4 point crawling and pulling to a stand! It’s beautiful! She still doesn’t use her left hand for fine motor skills, but when it comes to crawling (a large motor skill) her little mind has put it together on how she needs to use both sides to get somewhere. And the stairs in our house are her mountain. We put a lot of therapy time into those stairs, and she is getting it!
With Addison being so young there is still so much we don’t know. It’s a watch and wait experience. She has been seizure free which is wonderful, but it’s always a possibility. Her hips are free from dysplasia and vision and hearing are great. Her speech is delayed but we are working on it. She loves babbling, just no words yet. We are hopeful for her motor skills, but we are real too. When she reaches that point of walking, she will most likely need to wear a brace or need assistance from a walker at first. When it comes time to conquer something with two hands, she may just find a way around it with one. As much as we continue to work with her left side it may never function the way her right does and that will be something we will just have to push through.
We have what I like to refer to as our “village”. They are our family and friends, and they are our life support. Life has taught us that we need this village. Made up of all types of relationships and support. We are grateful to be able to have so many people in our lives and our children’s lives that care and support all of us.
Even if you aren’t dealing with Pediatric stroke, understand that some of us families are and we need your awareness and support. There is strength in numbers and we need your help to increase Pediatric Stroke Awareness! The more that people know about it, the more that people share, we can start to create a butterfly effect. The CHASA.org is an absolute gift for parents and children coping with pediatric stroke. We thank you so much for taking the time to read our daughter’s story and in making a donation to the CHASA organization so families like us can continue to keep these resources and blessings at our fingertips.