It's been a while since I've posted anything on my blog...and now I'm here to write a post that I can't believe I'm writing. We have just recently found out that sweet Duncan had a stroke around the time he was born.
A few months ago we started noticing that Duncan prefers to use his left hand. In his swing, he always reaches for the orange fish to his left. In his high chair, he will completely twist around to reach for something with his left hand. In his exersaucer, his right hand will often fall down into the seat while he reaches and plays with his left hand.
Once we noticed it, we couldn't ignore it. It's not just that he prefers his left hand, he rarely uses his right hand and when he does he has to work at it -- you can tell. Also, he almost always rolls to his left, because if he rolls to the right his hand gets stuck underneath him. When we put him on his stomach, he pushes up with both arms but his right hand stays in a fist. For that matter, his right hand is almost always in a fist, and he usually holds it close to his chest.
I mentioned all of this to his pediatrician at his 6-month check-up, he saw what I meant, but thought we should wait and see if he started using his right hand more by his 9-month check-up. I just couldn't shake it. I knew something was not right.
I called back and asked for a referral to a pediatric physical therapist, which our pediatrician was on board with. We saw the PT the following week, which at this point was just a short 2.5 weeks ago. She did a very thorough observation/evaluation and said that she thought his leg and foot might also be affected. She said that therapy would help Duncan, but that to find out WHY he wasn't using his right side we would need to have an MRI done.
Our pediatrician ordered the MRI and it was scheduled for later that week. Duncan woke up on the morning of the MRI with his first cold and ear infection, so it was delayed for 5 days so he could get a round of antibiotics.
It was re-scheduled for last Wednesday. The sedation for the MRI was a disaster. Apparently it is really hard to sedate a chunky baby because there is a layer of fat covering their veins! After being stuck 6 or 7 times by 4 or 5 different nurses, we gave up on the sedation. They re-scheduled us to come back the following week to have the MRI done with full anesthesia. As a last-ditch effort, they suggested I try to feed him and get him in a good, deep sleep & they would try to do the MRI while he was asleep. Believe it or not, it worked! He was so sleepy, hungry & tired of being stuck with needles that he zonked out. The MRI was so loud, I still can't believe he slept through it!!
That was last Wednesday. On Thursday morning I left for NYC on a trip that had been planned months ago with some good friends. The timing was awful for sure...but I knew that me going to NYC would not change the results of the test, so I went. It was really hard to be away, especially when I got the call from Graem with the results. He never used the word "stroke," but opted for a gentler "spot on the brain." We were scheduled to meet with a pediatric neurologist on Monday (this week). I tried my hardest not to obsess over being away and I did enjoy the trip, but I've never been happier to be home, see the big smile of sweet Duncan and hug all of my boys very tightly!
The neurologist appointment was really hard and took most of the afternoon on Monday. He explained to us that the stroke was caused by a blood clot that traveled through Duncan's neck to his brain around the time he was born. It is located in the left parietal lobe. The neurologist describes it as small, but in the pictures Graem and I were surprised at the size of it (definitely more than just a "spot"). Duncan was born with a heart arrythmia that corrected itself by his 2-week check-up, and the neurologist said it is reasonable to think that the arrythmia could have produced the clot, so he is sending us to a cardiologist for more testing. We also will have blood work done to check for any clotting disorders (next Monday).
Although the neurologist was mostly encouraging, he also presented us with some realities/expectations that were hard to swallow. I can't even go into them because I refuse to dwell on what the doctor has said Duncan "can't" do -- only time will tell.
He started OT on Wednesday, which will continue weekly in addition to PT. He will likely also start speech therapy soon. We can already see some improved use of his right hand after just the past few weeks of therapy. Our PT has commented several times that he is very motivated...he is trying to crawl and will work hard to use his right hand when he is challenged! You will notice in the picture above, which I snapped with my phone earlier tonight, his right hand is open. He normally has it clenched/fisted, especially when he is asleep.
We have learned that most infant strokes happen randomly and without cause, and that 40% of infant strokes are fatal. We are so very thankful that the Lord brought Duncan through the stroke. I can't bear the thought of what my sweet baby went through but I am so grateful for him and that he is otherwise a very healthy and happy baby! We are encouraged that he is so young and that the brain is an amazing organ that can re-circuit itself to compensate for damage. We are praying for the best and taking comfort in knowing that in all things God works for the good of those who love Him!
