An update before I forget the details... :)
In my last post I mentioned that Duncan's neurologist can tell from the MRI that the stroke was caused by a blood clot...so the next steps were to test his blood for clotting disorders and also scan his heart to make sure it was working properly (he was born with a heart arrhythmia, so the neuro thought the clot could have originated in his heart).
The blood work came back normal. We had a little scare with his heart, which was mostly due to a phone call from a nurse that lacked full information on the results of the echocardiogram. Turns out he has a small hole in the top of his heart called a PFO which is normal for babies in utero but should close on its own after birth. It is not something that requires surgery to close; our ped is hopeful that as Duncan grows it will close on its own. He will have another echo in 6 months to monitor it.
So...the hole probably caused the arrhythmia...but based on the location of the hole, it did not likely cause the clot. Which makes the stroke more of a mystery. A mystery which we will probably never solve. As much as I would like to know exactly when and why it happened, I have accepted that I probably never will know and it wouldn't change anything going forward, so I'm doing my best to let it go.
We are going to see a different neurologist, although we aren't sure who or where. We really would like to find a ped neurologist that specializes in infant stroke. In the meantime, Duncan is continuing weekly PT & OT (and of course we are modeling the exercises at home). He loves it! The OT made a hard splint that he sleeps in at night and a soft splint that he wears for part of the day. The main purpose of the splints is to open his right hand and stretch out his fingers, particularly his thumb.
We can see some improvement from the therapy. He has been getting up on hands & knees and rocking like he wants to crawl. I think it will be a while before he takes off because he has to figure out how to make his right hand/knee move forward, but we are happy that he is trying and the therapists like the symmetry of his "crawling stance." When he first got up on hands & knees, his right arm was bowed out to the side but now he pulls it right underneath him so that the left and right arms are both straight.
So...we see improvement, but at the same time the weakness in his right side has become more pronounced. His left side seems to be getting stronger by the minute and it is just happening much more slowly on the right. He can now feed himself Puffs or Cheerios with his left hand, as for his right hand, we are just happy if we see him attempt to use it at all.
We are still working on starting Speech Therapy (SLP). Why would a 7-month-old need speech? For one thing, he is not really babbling at all. Although he is not entirely quiet, he is not making syllable sounds (baba, dada, etc). Sometimes SLPs can help with feeding issues, which thankfully he does not have (as of Thursday he is almost 21 lbs!!). The most important thing an SLP can help Duncan with at this point is cognitive development. It is easy to focus on the way the stroke affected his right side because thats what we see, but the brain is a muscle which needs exercise, and SLP can help with that through cognitive exercises. I'm really curious to see what types of things they will do with him!
Lots of people ask me how I'm doing or how I'm handling all of this...and I have to say I really have a peace about everything. I don't want Duncan's stroke to define him. I know we will have bumps in the road...but isn't that part of parenting? I know Duncan will struggle at certain things...but we all have struggles. I have my moments of sadness and fear but I'm hoping and praying and doing my best to get past that! Above all, I know that God has a plan and I know that it is the best plan. He blessed us with Duncan which tells me He knows we can handle this!
Earlier this year our pastor preached through the book of Ephesians. I don't think Duncan had even been born when he taught Chapter 3, but several of the verses stuck with me. I saved them in my iPhone, this is my prayer for all of my children and we used these verses on Duncan's baptism invitations:
"And I pray that you, being rooted and established in love, may have power, together with all the Lord's holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge--that you may be filled to the measure of all the fullness of God."
Those verses are a reality check for me! They bring me back to what's important -- teaching my children the love of Christ. Not to make light of Duncan's condition, but his life will be bigger than what we are going through now. I'm thankful to be part of it!
