Friday, July 17, 2009

July 17 2009--From the Beginning

Hi! My name is Jill and my Fiance Coty and I have a perfect beautiful 3 month old little boy Kyler. He is our whole world. I decided to create a blog so that any one who wanted to be updated on how he is doing and see new pictures of him and how big he has gotten would be able to. Since we found out he possibly had wiskott aldrich syndrome we have pretty much kept him away from people other than immediate family, and today we found out he has it for sure so he will definately be on lock down. I have joked since he was born and said I needed to make him a bubble to put him in and now more than ever I wish I could. the story of Kyler and how we found out about Wiskott Aldrich. I was induced on Kyler's due date and I had a pretty tough time delivering him. He became a little stressed while in the birth canal and was stuck there for quite some time. When he was born he weighed 7 lbs 11 oz and was 18 and 1/2 inches long. He was severely bruised from the back of his head all the way up to his eyes. Vessels in his eyes were also busted and caused blood spots on his eyes and he also had petechia on his back. The doctors and pediatricians all thought it was because he had such a rough time being delivered and because he was in the canal for so long. When he was 4 days old his circumcision had still not quit bleeding and me being the paranoid mommy that I am I called the on call nurse who told us to go to chidlrens. We took him in and after being admitted to the hospitals for a day and many blood tests later they said he had thrombocytopenia. His platelet levels had been 90,000 when he was admitted on sunday night (150,00 is normal) and by monday morning had came up to 110,000 so they decided it wasnt severe and we could go home. Around 2 months later we received a call from a hematologist at childrens wanting to do a check up on Kyler. I said "Ok" thinking that we would go in they would check his platelets and everything would be great since he seemed so healthy. (By the way at his two week check up he had already grown 2 and 1/2 inches and weighed 8 lbs and 90z.) He has always gained weight very well and has grown length wise normally, so I was shocked when the doctor suggested that he may have something called Wiskott- Aldrich sydnrome. What made him think he might have it was because his platelets had came down to 83,000 and he also had eczema and very bad baby acne. Of course I came home and looked up everything I could about it and was still thinking that there was no way our baby could have that because he has never had any kind of infections he has always been a very happy baby, and has never had the symptoms such as blood in his poo. Well three test and 4 weeks later and today it was confirmed that he does have Wiskott Aldrich and his platelet levels are down to 69,000. So far his red and white blood cell counts are great, but just because he has them doesnt mean that they will work, so with that said we hope everyone understand why we dont take him to visit them. We promise that as soon as he is better everyone can visit and we will make sure he sees everyone. We know how much you all miss him. We will go to the hematologist monday who will then Set us up an appointment with a stem cell transplant doctor to discuss Bone Marrow (BMT or stem cell transplant) options and we will also assess how serious his case is.

I will try to update this blog at least once every week or every 2 weeks. Thank you to EVERYONE who has offered to be tested to see if they are a match for a BMT for him. I am still amazed at all of the people who willing to go through that pain to help our little boy. You all are definately Angels. Also Thank you to everyone keeping us in your prayers!! We need all of it!!


  1. Baby's are a gift from God and he is watching over Kyler and we are praying for him

    Love Grandma,Cathy,and the Byne Kids

  2. Hi Jill,
    My name is Kami Blatter and my son Hayden Blatter underwent a BMT for WAS last July. I am reading about Kyler and my heart and prayers go out to you and your family. Just like Paige & Ty with Ayden we have been through isolation, and are able to look back at that "bubble" we lived in and celebrate Hayden's life ahead. I can't wait till you can celebrate that day. It will come, it is a long road, but you have many WAS moms to hold your hand through this. Hayden is now 2 but if you want another prospective on this process, please feel free to visit our site at or email me!
    God Bless you through this journey.
    Regards, Kami

  3. Hi Jill my name is Julie Liscano and I found your site through the link from Aimee McNally for the WAS convention in July. Your story sounds alot like my son Christopher's. He has a carepage at under the name christopherliscano Christopher had his spleen removed when he was 4 and that was the best thing that has ever happened. The only symptoms Christopher ever had was low platlets and tons of bruises and nosebleeds. If you go to his carepage you can see all of the hospital visits that we had to make to Children's here in Dallas. I hope that everything goes well with the BMT. I guess we were just fortunate enough to not have to do the BMT and have his spleen removed instead. I look forward to hearing from you and keeping up with your story. My email address is Lots of love and prayers to your sweet boy.