Miss Tay's cord blood infusion
Hi, my name is Taylor (but lots of people call me Miss Tay) and I am 3 months old. When I was still growing warm and safe in mommys tummy the doctors noticed something was wrong in my head. They told my mommy and daddy that I had no brain and that I wouldnt live to be born and if I did I wouldnt live long after. Mommy and Daddy didnt listen to them, and decided to give me every chance they could to grow up to be big and healthy like my brothers and sister. Mommy and Daddy went to see more doctors, lots more doctors...and while everyone agreed that something was wrong in my head these doctors were nicer...they said I could live, that I might be alright or that I might have a lot of delays. That was ok with mommy and daddy...they just didnt want to lose me.
These doctors also gave a name to what was wrong in my head....its called Hydrocephalus. That means that something was blocking the spinal fluid that bathes "normal" people's brains and spines from leaving the ventricles in my brain...so they got bigger, and bigger. Eventually smooshing my brain until there was almost none visable at all when they took my pictures. They said it was so bad I wouldnt breathe when I was born, that Id have to spend at least 2 weeks in the NICU and that I might not be a "regular" baby at all...but no one gave up hope and I wasnt listening to anything they were saying about me!
I was born 2 weeks early, on February 6th...and I came out crying! That night they took me to a different hospital from my mommy so I could have surgery I would need to save my life. They put a thing called a shunt into my brain, it pulls all the extra fluid out and drains it into my belly, neat huh? My dr was great, shes real nice, and my surgery was over before I knew it. Then my head didnt hurt so much. I only stayed in the hospital for a week...I was too excited to meet my big brothers and my big sister!
Since then Ive been doing pretty well, I did spend a few more nights at the hospital. Once when the doctors told mommy and daddy I had something called seizures, they were no fun and they made me sad, and scared. Now Im on medicine, and likely will be for the rest of my life, but thats ok because they make me a happier baby. The other time was when my shunt came out of my head, and if its not in there its not working...so the doctors had to open my head back up to fix it.
Now the exciting part...mommy found out about a thing where they take blood that was in my umbilical cord and put it back into my little body. They say these cells can turn into anything in the body and while they cant cure me, they might help heal parts of my brain that got damaged while it was all smooshed, or damage that my seizures caused. My mommy and daddy saved my cord blood (daddy almost didnt get to see me before I had to go to childrens hospital because he was trying to find a fed ex) and now I get to go to Duke to have my cells put back into me! Im excited and I really hope this helps, it cant hurt to try even though its still a trial because its my own blood and cells going back into me...and Ive been stuck with so many needles for yucky things, I can take one more stick for something so good.
The problem is, daddy has missed a lot of work since I was born, with hospital stays and doctor appointments...mommy and daddy are "living paycheck to paycheck" and "robbing peter to pay paul" whatever those things mean. All I know is, for me to be able to go to Duke we need some help...the immediate need is for 75.00$ for the storage of my blood and money for the trip from PA to NC...like a hotel room for 3 nights, food, gas those things. Gas is expensive and since they arent making me sleep at the hospital, mommy and daddy can't just share my room like they usually do. But also, since this is an experimantal procedure mommy is afraid that my insurance wont cover it...I have quite a few bills that my insurance wont pay, but mommy is fighting threm for me. She always fights for me.
Please help in any way you can, every single dollar helps. Even if you can't donate any money, if you could please pray for me...and tell your friends. I'm doing better than any doctor thought I would, and I hope to stay that way.
Love and kisses to you all,
Also, I want to send a HUGE THANK YOU to each and every person who came to my basket party, all my friends and family who helped and to everyone who made baskets and desserts! It couldn't have been the success it was without all of you. <3
I want to update everyone on Miss Tay also since it's been a little while. She is now 8 months old! Where has time gone? Its so amazing to think that a little over a year ago we were told to terminate, and at this time last year we were still reeling and terrified of the unknown and what the Dr had told us. She is AMAZING! She has started sitting by herself, she is still wobbly and it doesn't last very long but this is a HUGE accomplishment for Miss Tay! She is smiling, and starting to giggle...it is the best sound ever!
We continue to have therapy every week, and we still have doctor appointments in Pittsburgh about twice a month (on a good month).
Our next cord blood infusion is scheduled for November 13th, and I am so excited I can't hardly wait!! The first infusion brought amazing changes to Miss Tay, everyone close to her saw the amazing improvements...so we are thrilled to see what new developments this second infusion brings!
Thank you all for the love and prayers, and for your generous donations! We wouldn't be able to do this for our precious baby without all of your help!
I am having surgery on September 18th, Its just one week away and I am scared but I know mommy and daddy will be with me, and I have lot of friends praying for me. If anyone would like to send a card for mommy and daddy to share with me when i get a little older I got my own PO box its
PO box 56
Mineral Pt, PA 15942
And if you could say an extra prayer or two I'd really like that.
Here is my story in our local newspaper...people keep calling me a celebrity I think thats kind of neat!
One last thing, then I have to get ready for physical therapy...keep your calanders open for October 20th. There is going to be a basket party for me at East Taylor Firehall. I'll even get to be there! :) Hope I can meet some of the amazing people who have helped me so very much in my journey. Love to you all!
Miss Tay, What a lovely name for a lovely girl. I am so happy that your mommy and daddy didn't listen to the doctors. You sound like you're going to do quite well. I have a grandson that the doctors told us would not live and he will be celebrating his 2nd birthday on May 16. I'm so happy his mommy and daddy didn't listen to those doctors either. But there are wonderful doctors too and we found one and it sounds like you did too. You tell your mommy and daddy to hang in there and never stop praying. I believe with all my heart my grandson wouldn't be here if it wasn't for God. I will keep you in my prayers and look forward to reading about your progress. My love goes out to you. God Bless