Weston's going to Duke and here's why

I wanted to start this blog to document our family's experience at Duke and to have something for Weston to look back on when he is older. I also wanted to keep our friends and family up to date with everything that happens while we are there. I'm sure there will be people that read this blog who have no idea what's going on so let me catch everyone up to speed....

When Weston was  about 4 months old, JD began to notice that he didn't use his left arm. He kept it down to his side most of the time, even when he was in his excersaucer and using his right arm to play. He didn't reach for things with his left hand and when we dangled something at his left side, he would reach across his body with his right arm to get it. We asked our pediatrician about it at his 6 month appointment and he very non-chalantly said we should keep an eye on it, that he could have possibly had a ministroke in-utero, but that it was probably just a developmental delay and his left arm would eventually catch up with his right. I immediately thought about my college roommate who had a ministroke when we were living together....no big deal, she was just a little dizzy for a few days and all was fine. The doctor made me feel like this was worse case scenario so I left that appointment relatively unalarmed.

At his 9-month appointment, things changed a little. JD and I were happy to report that Weston's use of his left side was improving although he still didn't have the same strength and coordination as he did in his right side and he was still unable to crawl. This time Dr. Karam (the pediatrician) said he now thought this was due to a ministroke....this was the second time he has used the term "mini". He told us Weston needed an MRI which he suspected would show a small "blip" on his brain. He said we would do the MRI just to confirm the "blip" but regardless of the results, Weston needed physical and occupational therapy and would be just fine.

Well this appointment happened to fall 4 days before we moved from Dallas back to Lexington where we would be living with my parents until we found a home in Louisville. We decided to wait to do the MRI until we were settled and Weston was a little older and could better tolerate the anesthesia. We started him in therapy right away when we moved to Lexington and both of his therapists suspected an in-utero stroke as well. However, they weren't using that word "mini" which I had been hanging on to for 5 months.

Fast forward a few months to November. Weston was almost 14 months old. He wasn't walking and he never crawled. He was able to move around by scooting on his bottom and using just his right side to pull himself along. We were concerned but his therapists were impressed with his progress and it seemed he was meeting his milestones, they were just delayed. We were finally settled in Louisville. We still hadn't done the MRI and we had our first appointment with a pediatric neurologist, Dr. Puri. He spent a few minutes with Weston and said "Here is what is going on here. What your son has is called hemiplegic cerebral palsy due to an in-utero stroke" My heart was pounding. All I could take in were the words "cerebral palsy." I didn't know anything about it, I just knew it wasn't good. When I heard those words I though of a severely disabled person. I did not think of my son. What happened to the ministroke blip? Cerebral palsy didn't sound like it was going away with a little therapy. It sounded terrible. I couldn't stand the thought of this diagnosis for my perfect little boy that I want to protect from the slightest discomfort. Dr. Puri started scribbling a brain on a piece of paper and showing us the area of Weston's brain he suspected was damaged and how much was damaged. He rattled off a list of what this could affect: his cognition, attention span, motor capabilities, speech. Then he said "This is going to be a big deal in Weston's life."  JD and I were devastated. A BIG DEAL. Since he was 6 months old, that word "mini" had me convinced that it was NO big deal. Now it was a huge deal and my baby had cerebral palsy. A word I still can't stand to even say out loud. I'll refer to it as "cp" from here on out. We did the MRI which confirmed this was no ministroke. My munchkin had a stroke. It wasn't massive, but it wasn't mini.

For the first time since the blip was ever mentioned JD and I broke down. We were beyond angry. I was going crazy wondering what I did wrong in my pregnancy to cause this. I was furious that the odds of this happening were 1 in 100,000 and it happened to my child. I was furious that I made it through my entire pregnancy completely fine until the final week when Dr. Puri suspected something went wrong. I was pissed that I had prayed every night since the blip was mentioned for nothing to be wrong with my baby and now I knew something was very wrong. For two days I didn't answer my phone. I told my parents about the appointment but that was it. I was too upset to talk to anyone. Then my sister called and thank God I answered.

She said she knew I didn't want to talk about it, but that she just had one thing to quickly tell me. She said, "I just think God had this little baby that he knew would need a little extra help and he chose you to be his mother." And right then and there everything changed.

How blessed am I that this is my son?! God chose JD and I for him because he trusts us to take the extra care he needs and knows we will do EVERYTHING WE CAN FOR THIS CHILD. I would have this no other way. This is my baby, I proudly take him just as he is. He is happy and he is loved. Done with the pity party. Thank you Katie, Thank you Jesus, moving on.......

Now, before Weston was born, JD and I decided to bank his cord blood. We spoke with a OBGYN friend who recommended we bank it if we could afford it. He said nobody was really using it now but that it showed promise for the future. Twenty years from now if Weston were to be in an accident they could possibly use his cord blood to save his life. He said it was like an insurance policy with no guarantees. We discussed it and decided that even though it was insanely expensive, we would feel horrible if something were to happen where we could have used it and didn't save it. So when Weston was born, they collected the blood, sent it off to Arizona to store it and we forgot about it.

Then one day, when JD was in surgery, he was telling the surgeon, Dr. Kevin Harreld,  about Weston's diagnosis. Dr. Harreld asked if we had banked his cord blood and said "Well haven't you seen the research on cord blood and kids with cp?"

No! We hadn't seen it, but we immediately started googling it and found miraculous stories about kids who had strokes and were in much worse shape than Weston. There were kids who had complete paralysis on one side that had there cord blood infused back into their bodies through an IV and a few days later were walking, running, jumping, talking. MIRACULOUS stories! The theory is that the stem cells in a baby's cord blood can be infused and then travel to the area that is damaged and start repairing it. Pretty amazing stuff. I was coming out of my skin. I wanted to know how to get this done and I wanted it done yesterday.

After lots of phone calls and research, we found a study being conducted at Duke University by Dr. Joanne Kurtzberg that studies the effects of cord blood on children with cp. As you can imagine, Duke is on the forefront of this cutting edge research. Cord blood infusions are not common practice and are still in the clinical trial phase. The only way to get an infusion is to participate in a clinical trial. For the trial, Weston will go to Duke once a year for 3 years.  For his first visit, he will get an infusion, however, we won't know if he is getting his cord blood or a placebo. He will go for his second visit one year later and he will get another infusion of whatever he didn't get the first time. At his third visit, they will reveal to us when he received his cord blood. So basically, he gets infused and we wait for a miracle. There is a chance his life will change. There is a chance that everything will stay the same. But there is no chance of us having any regrets that we didn't do everything possible to help Weston. He is doing so well as he is now....walking, dancing, playing basketball and trying his best to talk! If he shows no miraculous improvement, he will be just fine. Given his persistent personality, I'm positive he will overcome huge obstacles. I have peace in knowing that no matter what happens, God has a plan for Weston and I can relax in knowing everything will be ok. I am just so happy to have the ability to do this for him.

If you have taken the time to read this, thank you.  I hope you'll take another moment to say a prayer for Weston. He gets the infusion on Tuesday, March 13th and it is going to be a BIG DEAL. I will keep you posted!