Monday, March 4, 2013

Round 2

Today is our first day back at Duke for the second phase of the study. I haven't posted any updates in a long time but I guess the most important update that I've left out would be our last neurology appointment in November of 2012. Dr. Puri was REALLY impressed with Weston's progress. He had been pushing us to do constraint therapy (casting Weston's right arm to force him to use his left) for the past year but we never felt comfortable with it and ultimately decided it wasn't what we thought was best for Weston. Well, when Dr. Puri saw Weston's progress, he said it was the kind of progress that he hoped would have resulted from constraint therapy. Since Weston is doing so well on his own, he no longer thought the casting was necessary. That was music to my ears because we battled with ourselves over that decision! On top of that, Dr. Puri also wasn't convinced that Weston's delayed speech was stroke related. He thinks he may just be a late talker....again, music to my ears! Speaking of speech, Weston has been in a word explosion over the past few weeks so I'm feeling really good about where we are right now.

Today Weston will just have a physical and neuro exam. Tomorrow is MRI and infusion #2. Wednesday and Thursday are OT and PT days. It's crazy to think that after tomorrow, we will know for sure that Weston has received his stem cells. He's improved so much that I don't feel as excited about this year's trip. I guess deep down, I believe he already received the cells and that tomorrow is kind of a waste with regard to Weston receiving a helpful treatment. (I obviously know it's not a waste because we are contributing to the study) However, I try to keep reminding myself that it IS possible that he's improved this much on his own and what a huge bonus it would be if he receives the stem cells tomorrow! I guess I'm in the best possible position going into tomorrow. It's a nice feeling ;)

Friday, June 15, 2012

Status Update

I was at a party tonight and a few people that I hadn't seen in a while said they had seen the blog and asked about Weston. I so appreciate that people care to know how he is doing and I realized I'm a terrible blogger and should probably post an update once in a while. Especially since I have good news.  Mr. Weston is doing so well that his occupational therapist thinks he received the cord blood! She said over the past few weeks, she has seen an improvement rate that surpasses what she has seen before or what she would expect to see from Weston given his diagnosis. Anne Fitzgerald told me that we would probably see results 3-6 months post infusion if Weston received the cord blood cells. It's just really interesting that Tara (Weston's OT) is seeing big changes right now, right at the three month mark. She put Weston in the wheel barrel position the other day and he supported his body weight on both hands. She even shifted him to his left side and he didn't collapse. I mean, that is huge people! He is also choosing to reach for things with his left arm even when his right arm is free. He used to NEVER do that.

Before we went to Duke, I really thought I would drive myself crazy after the infusion wondering if he got the stem cells. I haven't gone crazy at all. I am just so happy with his progress and I don't even care what's behind it, I'm just glad he's doing so well. In fact, the other day, one of my friends told me I was being an overprotective mom because I was following him around the baby pool like crazy anticipating a fall. I don't think I was being overprotective at all but I do think it's awesome that she thinks I was. That tells me that she doesn't think Weston NEEDS me to follow him around. I'll keep following him because if he falls underwater, I don't want to take the chance that he can't lift himself out. But the fact that other people don't really recognize that he does need me tells me he is doing pretty good!

Sunday, April 1, 2012

Back Home

It has been about 3 weeks since Weston's infusion. I never got around to blogging about the last day we were at Duke, but there really wasn't much to tell. Just physical therapy assesments for a few hours and we headed home. Many people have asked if I've seen any changes in Weston since we've been home and the answer is yes. However, I haven't seen anything crazy miraculous happen. He improves everyday. One day he can't say any words and the next he can say "go" and "ratrer" (cracker). Then for a few days he doesn't say anything again. He is improving with spontaneous reaching with his left hand. We have a toy where you push a button and a door with an animal inside opens. Weston always shuts the doors with his right hand unless I hold it down and force him to use his left. Today he shut the door with his left without me holding his right. It was still uncoordinated, but he chose to use it and that is huge! He is also walking down stairs holding my hand and squatting better since we've been home. So basically, he is showing improvement everyday but I'm not willing to say that I believe it's due to cord blood. I guess this is why they have a hard time determining whether it works or not! I don't really care how he improves, I'm just happy he is improving! I think they also gave him an IV of happy while we were there because he has been the snuggliest, sweetest boy lately! He is really into hugging right now. He takes lots of hug breaks while he plays. He'll be in the middle of something and then he will just stop, come give me a hug and go back to playing. That's it for now...hopefully I will have much more to report...especially since according to Anne, we won't see results for 3-6 months if he did receive the blood!

Wednesday, March 14, 2012

Infusion day and Day 3

J.D. wrote the longest post ever last night and then somehow it was deleted before he had a chance to publish it! We were both too exhausted to redo it last night so let's try again today. Yesterday was the big day. We got to the hospital around 8:15. Again, Weston immediately started acting nervous. We met with the best anesthesiologist I've ever encountered. He was a young guy from England and a soccer fan so he and J.D. had a lot to talk about. He gave Weston some medicine to make him loopy, but he was still aware enough to know that he didn't want anyone touching him! This Dr. gave him the quickest IV he's ever had which made me love him even more. Weston was of course crying through the process and the instant he received the sedative through the IV he zonked right out. It was actually pretty funny. Flopped his head right down mid-whaaaaaaaaa! The MRI took about 45 mins. JD and I went to Einsteins bagels for breakfast and coffee like we did in the old days in Dallas. After breakfast, JD and I waited in the recovery room for Weston. When they brought him up, he was still asleep and remained that way for another hour or so. When he woke up, he had a bagel and a visit from a music therapist. This guy just had a guitar and sang a bunch of kids songs and Coldplay to put Weston at ease. He said he would be there for the actual infusion as well because we needed Weston to stay as still as possible. I was starting to get nervous at this point. Not because I was worried, but because the moment we had all been waiting for was about to happen. They brought up the bag and it had a clear liquid with a pinkish hint to it. I immediately thought, "Oh great, it's not the cord blood." I asked why it didn't look like blood and they said they had to wash the blood out and that it would only be the stem cells. Dr. Sun was in the room now and started hooking Weston up which was painless but he wasn't happy about it at all. The music therapist started singing songs about animals that growled because he had figured out Weston loves to growl and roar. It pretty much didn't work at all. Hahahaha, so JD and I just held him and told him he was ok and he kind of went in and out of panic mode. The infusion itself didn't even take 10 mins. There was a camera crew there that filmed the infusion and interviewed JD and I afterwards. I hope I never see that interview. I felt like I couldn't get my thoughts together and sounded stupid. Oh well. After the interviews, Weston had to stay in the hospital for 2 hours to be monitored in case of an allergic reaction. He took a good nap, and all was fine. We went out to lunch afterwards and he was happy as a clam for the rest of the day. This morning we met with Anne before Weston's occupational therapy appointment. She made a point to tell me that if he received the stem cells yesterday, we would not see a miraculous improvement in the next few days. She said it would take at least 3-6 months. Good to know, because I had pretty much planned on watching him like a hawk for the next few days. I asked her about the stories I had seen online and on tv about the kids who practically changed overnight. I asked if their parents were lying. She said she wouldn't call them liars and that she can understand how badly they want to see their children improve, but that whatever they saw over the course of a few days was not stem cell related. I'm just glad I know that now so that we can relax a little and not drive ourselves crazy over the next week. Anyway, today was a very short day. Weston just had an occupational therapist evaulate him. She just gave him a bunch of different toys and observed the use of his left hand. Pretty quick and easy. She did say that he did better than expected and recommended a few toys for us to get. After that, we went back to the botanical gardens and played the rest of the morning. It has been a good day so far.

Monday, March 12, 2012

Day 1

Before I recap the day, I just want to say thank you sooooo much to all of you for reaching out to Weston, JD and I and offering your prayers. I published the blog the day before we left and we couldn't have asked for a better send off than we were given through all of your well wishes! It is much easier to get through this stressful time feeling the support of family, friends and even people we've never met! Today was a long day and we were told the hardest day, so we are glad it is behind us! We arrived this morning at Lenox Baker Children's Hospital, and the moment we walked through the doors, Weston's happy demeanor changed. He was obviously scared which bothered JD and I and got the morning off to a rough start. We met with Dr. Sun and Anne Fitzgerald (the RN that we've been corresponding with leading up to our arrival). They were wonderful. We spent the next 45 minutes or so just talking about the study, and asking questions while they got to know Weston and tried to make him more comfortable. I asked Dr. Sun about the study results thus far and you could tell that she didn't want to offer up anything too specific. I'm sure she didn't want to get our hopes up or crush our hopes! She basically just said that some of the kids have shown significant improvement but that they can't confirm whether or not the improvement was due to the infusion. Next we met with another Dr. who did a pyschological evaluation on Weston. This appointment was great because she just played with Weston for a couple hours and he had a good time! She played several different games and scored him on his cognition and speech. She was impressed with him and said his symptoms were obviously mild. (We love it when people say that.) At the end of her assessment, she said that Weston was within normal range cognitively but that he was behind on speech and pretending. She was happy to hear him jabbering and felt like he would probably start talking soon. She also said pretending starts to kick in more once kids start talking and she was also glad to see that Weston likes to pretend he's on the telephone. All in all, this appointment went well and JD and I felt like the results were positive. As you can imagine, we have been most concerned about his cognition and we love to hear that he is age appropriate in this area. His therapists at home have felt that way for months, but we can never hear it enough! After that meeting, Weston had several viles of blood drawn which was obviously terrible but the lady who drew it was super sweet and was giving JD a hard time. She was like "Dad, are you gonna let go of him? It's hard to tell this is your first child, Dad!" Those of you that know J.D. will appreciate that tidbit. Later in the afternoon, Weston had a physical and an evaluation by a wonderful neurologist. It went well for the most part. There was no pain for Weston, but he was still nervous and upset some of the time. You can just see the poor little guy anticipating something bad about to happen. Several people commented that he had obviously been to the Dr. too many times. The neurologist said he did well with the testing, and thought he would improve a lot with more therapy. He was very happy with his walking and felt like his hand was much more affected than his foot. We also love it when people say he walks well! He gave us some good advice. He said as his parents, we must research and weigh our options when it comes to different treatments for Weston. At the end of the day, we must go with our gut feeling. He said he is sure that no matter what decisions we make, they will be the right ones for our son because nobody knows and loves him like we do. Now how refreshing is that coming from a neurologist? That's it for day one. We took Weston for some ice cream for being so brave and now we are getting ready for infustion day tomorrow! Thanks again to all of you for praying for Weston! Please keep it up! We'll post again tomorrow!

Thursday, March 8, 2012

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 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!