BMT Plans- We met with the doctor yesterday and Kyler will be getting his hickman catheter next tues and then we will start his workup. We are using the cord and should be admitted the last week of Feb. The doc feels very confident that Ky will do great. I know he will. He is such a strong, sweet little boy. He does something to amaze me every day. He now shakes his head no and it is so funny bc If he is doing something he knows he isnt suppose to be and you say his name he shakes his head no to let us know he realizes he shouldnt be doing it. He's even started shaking his head at us if we are doing something he thinks we shouldnt do. Too cute! He has his helmet now so he can play on the floor more. That is going to take him a while to get use to. He is the best baby. He's so good. He's very vocal which my husband blames me for LOL (I was a VERY vocal child.) Please Pray for our sweet baby! We love him so much! Thank you all for your prayers and thoughts for our little boy.

We received a call from the doctor telling us that we have found a 6/6 cord and a 9/10 donor..and POSSIBLY a 10/10 donor. This news made me very happy because before all we had was a 4/6 cord and 8/10 donor. They ended up having to check registries from other areas. These people were not on the NMDP. They were, however, on a registry. We will know more in a couple of weeks and when the results come back from the possible 10/10 we will sit down and talk and then get things started.
Kyler had a GREAT Christmas. He has TONS of toys.The house is covered in them and we still havent even seen all of the family. Some people were sick so we will have to visit them in a few weeks. Other than that things are good.Ky is bruising MUCH more easily which is usually a big sign in him that his platelets are dropping again. Im just very glad he is doing good otherwise. I love him so! Please keep him in your prayers. Happy New Year everyone! :-)

We had a doctors appt today and Kylers platelets are down to 39,000. They have three more potential donors who they are "very interested in." So, we wont know anything about the BMT until Jan 15. Other than that he is doing good. He has 2 teeth.TOO CUTE :-) He says momma clearly and today he said dadda. It was cute because he was sitting there saying mommadadda mommadadda. Hes getting so big! 19lbs 8oz and 27 inch long. he's so sweet and so much fun! Please keep him in your prayers! We dont have another appt until Jan 15 so incase I dont update before then Merry Christmas everyone!!

So this is the plan thus far..Looks like we will be using the cord. They are wanting to do Kyler's "work up" in the middle of Dec and let him spend Christmas and New Years at home and then if all goes well and as planned we will be admitted after the first of the year. So far he seems to be doing really well which is a blessing. We had new family pictures done so I am going to post one. He is getting so big. He sits up says ma-ma well his is mumma its so cute though. He doesnt want to crawl but tries to push up on his feet. He is so sweet and he KNOWS he has mommy wrapped around his little finger :-) Please keep him in your prayers and pray he does wonderful with the CBT!

Friday Nov 13th

Well..The good news is Kylers platelet are up to 50,000..so bumps on the head are still a concern, but not as much of one. Bad news is his t-cells came back low which means his immune system isnt functioning like it should. He had a great appointment though. He did awesome with his bloodwork as always..and flirted with all the ladies :-)) He a little charmer :-D Still no luck with a donor. Tons of 8/10 matches but childrens wont attempt it until it is a 9/10. We have a cord but since I am not thrilled about cords the doctor decided to wait until after the holidays before he starts trying to persuade us to use the cord. Please pray we find a donor before then! We would like a 10/10 but at this point would be happy with a 9/10. Ok..Now just an extra note..I just want to mention that I know a lot of people miss Kyler and would like to see him. We ARE NOT keeping him away from people to be mean..we are doing it for his health and safety..and this is what we were told to do by doctors because of the flu situation and it being the time of year for many other illnesses. We promise that as soon as Kyler is all better everyone can love on him and give him all of the hugs and kisses they want. Until then..we just hope you understand that our baby is the most important thing in the world to us and I will do whatever it takes to keep him healthy. :-D Thank you to EVERYONE who has been praying for Kyler and being there for us..and thank you to those who have been so understanding :-D We love you all! Please Keep him in your prayers :-D I probably wont have updates for around 4 weeks but if anything happens before then I will let you know. OH and just some Kyler updates..He sits up on his own.. says mommom..knows that when I hand him the phone he is supposed to start talking LOL..and he is the sweetest most precious baby! He is my whole world and I am soo lucky to be his mommy! OH and he is just a little bit rotten :-D But that was to be expected LOL. Until next time..Please keep praying for him :-)

A step closer.

Today we had a doc appt with both the hemtologist and the BMT doctor. His platelets have stayed at 41000 which is GREAT!! They ran a immune test on his B-cells today and will do his T-cells in 2 weeks. We should have the results to the B-cell test by then. They wanted to start him on bactrim but since Coty (my husband, Kyler's dad) is HIGHLY allergic to it they chose not to risk it with Kyler and put him on dapsone (I will fix it if that is spelled incorrectly..I dont have the script in front of me). The stem cell doc wants to do something within the next 6 months so..hopefully we can find a perfect match donor soon. So far the best we've found (given that Kyler has a rare HLA typing) is an 8/10 on a person and a 5/6 on a cord. He feels that if we dont find a better donor match we MIGHT consider the cord, but there are 3 more donors coming in next week and 1 was tested today, so he is going to wait a few more months to try to find a perfect 10/10 match on a donor. Please Pray that we find a match!! We got a ton of more info today but that covers the majority of it. He did absolutely wonderful during his blood work. He laughed at his ducky :-) and held his blanky. He weighs 18lb 9 oz and is 26 1/2 inches long. Great blood pressure and temp. Other than that he is doing GREAT. We raised his dose on Zantac which seems to be helping with the fits he was having from hurting and his tummy problems seem to be getting much better and he is now eating baby food 3 times a day and drinks a ton of formula in between feedings so he is very healthy in that aspect. We have another appt in 2 weeks but if we find something out before then I will update. OOH...as usual Coty and I were each only a 5/10 match..so not a good idea! Please Pray for Kyler and Pray we find a perfect 10/10 match! Love you guys!!

Fridays Results

We went to Kyler's hematologist last friday Oct. 2nd. and we all three had to have lab work done. I must admit that Kyler did the best of all of us. I tried to keep him from looking but he watched the needle go in and the blood come out and never even whined. OH ...and he didn't even want to hold his silky (blanket). Coty didn't do so well..but he never does with blood. He really gets sick when they have to take it. I was nervous but nothing like I use to be. After everything I went through during my pregnancy I'm pretty sure not much bothers me. I still can't watch the needle go in but I don't mind watching the blood. Anyways...we did that so they could check out HLA typing and hopefully we'll have the results in a couple of weeks.
Kyler's platelets have came down to 41,000 but everything else looks good. They did some test to check his liver and kidneys and everything looked great. He weighs 18lbs and is 26 inch long. He is getting soo big! That is all we found out..we'll be meeting the new stem cell doc in 2 weeks so we will have more info then.Please Keep Kyler in Your Prayers!