Childhood Stroke Awareness

I know that I haven’t said much about Ryder’s stroke since we found out that he had one, it surely hasn’t left my mind but I guess that’s just where I’ve been letting it live for now.  I’ve been trying to do as much research as possible and really trying to process what it means and how to move forward.  One of the major things that I’ve noticed in all my desperate attempts to collect information…is that there is not much to collect.  In fact, they have dedicated an entire month this year to Childhood Stroke Awareness due to the fact that people are so uninformed and unaware of the fact that babies can have strokes.  So, in an attempt to get the word out, I thought I’d take the first day of Childhood Stroke Awareness Month to get the word out that babies DO have strokes…ours did! 

I started noticing Ryder’s hand dominance very early on.  In fact, in going through old posts I realized just how early I started noticing it.  I mentioned in his three month post that he could rub his RIGHT eye with his RIGHT hand when he was getting sleepy.  And when he was four months old and found his toes he would only grab his RIGHT foot with his RIGHT hand.  Even though I was always so happy about every milestone he reached, I had this constant nagging question in my head “what about his left side??”  I brought it to the Pediatrician’s attention at his 4 month appointment and we agreed to just monitor it, knowing that he could have certain delays from being premature.  We revisited the issue at the 6 month appointment and decided that if his left side hadn’t caught up by the 9 month appointment, she would send us for therapy.  I hate waiting, it drives me crazy, I made it to 8 months and couldn’t take it anymore…remember??  I took him for an x-ray, found out it was nothing physical, then contacted Early Intervention.  They came out and did a full evaluation at 9 months old and I had my first major meltdown when they suggested that I take him for an MRI of his brain.  He has been in Occupational Therapy with them once a week ever since.  We saw a Neurologist when he was 10 months old and he agreed 100% that Ryder needed to have an MRI done…he suspected a stroke and he was right.  The week after Ryder turned 1, he had an MRI done that confirmed he had a stroke-in-utero and he was diagnosed with Left Hemiparesis. 

So, here we are one month after the diagnosis and Ryder is hard at work being rehabilitated.  I’ve made the decision to seek out more therapy because I feel that he is at a critical point in recovery right now, so he has an Evaluation at Children’s Hospital on May 25th.  I’ll work on some updates soon about where he’s at with mobility and the use of his left side.  I don’t purposely avoid the topic, but I’m still trying to find the right balance.  As most of you know, I use this blog as his “baby book” so I’d hate for him to get older and think that his whole childhood we only focused on his weakness.  As you can see, we do not treat him any different (and don’t expect anyone else to either).  We let the sky be the limit with him, and as determined as he is, we know that he will continue to reach that high!

I decided to write this whole story out from the beginning because, in all my research, the thing that has helped me understand this diagnosis the most is the blogs that I have come across of children with situations just like Ryder’s.  I have spent the last month reading their blogs all the way back from the beginning.  Relating completely to the raw emotion that their Mothers were so unashamed to write about, the unconditional love that they have for their children, and the willingness to push them and fight for them, doing everything in their power to give their children the best chance at recovery.  I am so beyond thankful for these Moms, and they don’t even know it (well one does, because I emailed her, because I’m crazy like that!)  As I mentioned before, there is so little information out there, so maybe another mother who is up in the middle of the night, desperate for some hope and encouragement, will come across this post and realize that everything is going to be okay!  Their baby is absolutely perfect, God is still in control, and life moves forward :-)

Check out this FACT SHEET for some pretty interesting stuff about pediatric strokes and how you can help get the word out that babies DO have strokes!