Saturday, December 26, 2009

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! :-)

Friday, December 11, 2009

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!!

Tuesday, November 24, 2009

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, November 13, 2009

Friday Nov 13th

Well..The good news is Kylers platelet are up to 50, 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 :-)

Friday, October 16, 2009

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. usual Coty and I were each only a 5/10 not a good idea! Please Pray for Kyler and Pray we find a perfect 10/10 match! Love you guys!!

Tuesday, October 6, 2009

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!

Monday, September 28, 2009

Kyler's First Zoo Trip 9-27-2009

Yesterday we took Kyky on his first zoo trip. We know he probably wont remember it but I took a ton of pictures (especially of his fav animals) to make him a story book out of so that while he's in the hospital and once were home I can read it to him and he can see all of the animals. About the trip..he had soo much fun! He took a nap on the way down there so when we got there he was kind of still out of it but he started waking up when we got to the ostrich and he couldn't take his eyes off of it. It was following us which got his attention even more. He liked anything that moved but the animals that were staying still bored him :-D He LOVED the sea lions. We were going to stay for the splash show BUT the more we thought about it we decided it wasn't a good idea because he would be in a big crowd so we didn't watch it. We did, though, sit down on a bench beside them so he could watch them longer before people started crowding around and fed and changed him. After that he was WIRED. I wondered if there was some caffeine in the formula :) J/K. He was laughing soo hard at all of the animals that would move and talking and waving at people..and as usual he flirted with a little (but older than him) little girl. He got to see two monkeys fighting and it was funny because I call him monkey so I would say "Look at the monkeys monkey" and he would look at me like I was crazy. He also liked the rhinos..which are one of his daddy's fav. The last thing we did was ride the train. He liked it until the lady came over the loud speaker. He started to cry but then she stopped talking and he was fine. We knew he was getting sleepy so we left after that and we didn't even get out of the parking lot before he was asleep. We were all tired when we got home but it was such a pretty day and he loves being outside so we took advantage of it. Coty mowed the grass and me and Kyky played outside with his Jeep walker until it was time for his nap. He was soo tired by bed time that I let him go to bed early and he still slept until 7:30 this morning. The only bad thing was that he didn't wake up at all and he ended up peeing out of his diaper because he was sleeping on his side and was so tired that he didn't wake up when he wet himself. I felt bad..but when he woke up he was laughing and in a good mood so I just washed him off and so far this morning he has ate breakfast played, watched Mickey Mouse Clubhouse, which is his fav, and now he's that means I better go get ready while I have the chance. It's time for another babies r us trip to stock up on diapers and formula. We have a doctors appt Friday so I will update then. Please Keep Praying for Kyky! Love you guys!

Saturday, September 19, 2009

Okay, so what I think what I have tried so hard to keep from happening happened...I Caught the "scum" from Kyky. I have a place on my neck that looks like it..but I'm not surprised because he has one on his arm and he has started hugging me and rolling around a lot on me so I knew I would get it. I'm not upset that I have it because considering that my immune system is fine, it should clear up on it's on if I don't spread it,plus he's my baby..there is NO way I would be upset about getting something from him. I just didn't want to get it because he is at that age where he kisses and hugs and touches and even LICKS (which, with the licking, I try to intervene and keep from happening) whatever he can on mommy and I don't want to spread it all over him. I have been so careful too..I wash my hands anytime I change his clothes bath him etc or just feel like they need to be washed =) I even get my husband to hold the towel open after Kyler's bath and let me hand him to him so that I can wash my hands between bathing him and dressing him for bed. Anyways..the main point of this blog is actually kind of crazy...Kyler is at the age ( 5 months) where he needs a lot more belly time to learn how to crawl and lift up. Well, we have hard floors and NO carpet anywhere in the house, and of course I'm concerned about him losing his balance and bumping his head. He hates being on his belly in the playpen and our bed is too soft for him to get balanced, and he won't stay in his bed because he has decided that it is only for bedtime. I even tried putting a bunch of blankets on the floor but once again if I got them soft enough to make me feel okay about him being on the floor, then they were too soft for him to keep his balance on his arms so he laid down and cried because he thought I was trying to make him lay down and he wanted to play. I asked his ped about him not crawling and she said it wasn't a huge issue if he never crawled, and we have an exersaucer and a Jeep Walker so I thought "Well atleast he's learning to use his legs" BUT today I read an article that said those are both kind of bad for learning to walk because they teach them to use different muscles and they don't really have to be able to keep their balance to stand up in them (which I know that part is true). Who knows?!?! I know you can't believe everything you read but it just made me wonder, plus I have been concerned about him not developing as fast because of not being able to play on the floor. He's doing GREAT in every other aspect though so I guess I shouldn't worry. He pulls his self up to sit and will try to pull up to standing position if you hold his hands. Any suggestions on what to do about him playing on the floor??

Friday, September 18, 2009

So, we were given good news yesterday..they found 4 more "Potential" donors. We are just waiting on their blood work. My husband and I will be tested in 2 weeks. She said even if we aren't a match it will help with finding a donor. I think it would be awesome if one of us is a perfect match, which is rare. I would love to be because I would be available 24/7 for them to do or take anything from me they needed for him. Plus, I would be more than willing to do anything extra just for precaution. Other than that..his "scum" as we have started calling it, because I think I am the only one in the fam who can remember the full medical term, molluscum, has gotten worse. He has been really moody and ill but I'm sure it is because the molluscum is bothering him because I have taken him to the ped twice because he sounded congested and so far they are saying it is probably just sinuses.Plus, he's had tummy issues since he was born and this week it has seemed to be really bothering him. Oh..and about the "Scum" thing..for some reason he finds the way we say it really funny so that's another reason why we have started calling it that. Please Pray for him and that he feels better! OH..By the case Kami or Aimee read this..I listened to that song last night "He's My Son" and I'm pretty sure that is the first time I have really just let myself cry. So I don't know if I'm glad y'all had it on your blogs or not =) J/K. It was a really touching song! Also..Kami..I tried to leave you a comment on your blog but it wouldn't let me. Hayden is adorable! Hayden, David and Ayden are all in my prayers! They are ALL so adorable! I know we are moms and are suppose to think this but I think we all have some pretty amazing little boys! =)

Tuesday, September 15, 2009

Yesterday we went to the hematologist. Turns out Kylers HLA typing is fairly rare because he got some of the exact same stuff from Coty and me. (Our types ended up being a LOT alike). SO that is why it has been so hard to find a donor.That does mean, though, that they may want us to be tested. I spoke to a lady today about setting up a way for any of you who want to be tested to be able to do so. Ill call you or post it on here when I find out the exact details. About his appt yesterday...we dont know where his platelet levels are..LONG STORY...which frustrates me but he still isnt bruising too badly and has no active bleeding so we'll have it checked again in two weeks. I found out his mutation and Ive been trying to research it but so far I cant find his. Maybe I will soon though. Other than that he is doing fine..he still has molluscum , which is getting worse, and he has been very tired and irritable the last few days but that isnt surprising considering he had shots friday and we didnt have so great of a day at the doctor yesterday..its the first time in a while that he has cried during his doctor visit/ lab work. Other than that though he's still a perfect angel =) Please keep him in your prayers =) Love you all!

Sunday, September 13, 2009

I took Kyler to his pediatrician friday and it turns out that it is molluscum. Tomorrow we are going to see his hematologist so while I am there I am going to have him refer us to a dermatologist in the same hospital so that they can all work on Kyler's case together (the derm the hematologist and the stem cell doc). I prefer them all being able to meet instead of doing like we have to do with the ped where they are always having to send each other letters etc and wait on each other's response. Anywho..We went in friday mainly for the bumps to see what they were since Dr. Candotti was concerned about what they were and said that knowing would help with his opinion somewhat but, Kyky ended up having to get 2 shots. His ped asked me why we hadnt had his 4 month shots done and I told her the the other stem cell doc (The one who is gone now and no longer on Kyler's case) had said he didnt need them. Well his ped thought this was odd and she knew he couldnt have live viruses but thought that he should probably have the other ones. She called his hematologist who agreed that he needed them but checked with the new stem cell doc who said yes he definately needed them. So my angel ended up getting 2 of them. They did one in each leg and we had to wait 45 minuted afterwards to make sure he didnt have a reaction to either of them and if he did they would know which one it was. Luckily he didnt bleed or bruise to badly and he didnt have any reactions. So we have just had to keep him on tylenol the past 2 days because he has tried to run a low grade temp. Today he is doing MUCH better and he is playing a little which is good because the last two days he hasnt really wanted to eat or play he has just wanted to lay on me (which I LOVE I just feel bad that it is because he's sick) or he has wanted to sleep. A lot of that though is because he has been taking tylenol every 4 - 6 hours and today I have only given it to him once. I don't think he'll need any more. OH!! I meant to mention...he actually did fairly well with his shots especially compared to how he did with his two month ones. He didnt cry when she stuck him (I guess by now he's use to that) But he started crying when the medicine went in because its so thick and stings. As soon as she was done, though, I picked him up and he was fine as soon as I loved on him and started playing with him. By the time we left he was giggling and playing. He really has been so tough and strong through all of this. Im so proud of him =) Well That is pretty much it for now..I didnt realize how much I had written =) Ill be updating tomorrow since we have a hematologist appt. Please keep him in your prayers!

Thursday, September 10, 2009

Today I spoke with Dr. Candotti at the NIH. He was only able to go off the info that I gave him and he still wants some more info but his opinion was that it is a tough decision on whether Kyler should or should not have a BMT at this point. He would feel better about giving his opinion after we have a few immune tests ran (which I plan on trying to have done this week). Me and Coty would really like to go see him personally but Kyler DEFINATELY doesnt need to be on a plane with everything going around and it would be too long of a trip by vehicle and Kyky has started hating his car seat to the point where when Coty him and I go somewhere together I usually end up in the backseat with him. So, we more than likely will not be able to go see Dr. Candotti but I am going to have the test ran that he would like and give him the info. His opinion is that in ways Kyler sounds like XLT as far as platelet levels go BUT he said these new bumps (which I talked about in my last post) sound like they could POSSIBLY be a skin related virus which could mean that his immune system is being affected and that he is more on the WAS side rather than the XLT side. So, as previously mentioned his opinion is now going to be based off of which mutation Kyler has (when I find out) and what the immune tests reveal. So at this point we are still opting for the BMT. No donors found yet, and after reading a couple of things I would really rather not use a cord. I am going to do everything in my power to avoid that. I know SOO many of you have offered to be tested to see if you are a match and I am so grateful for that!! If we cant find a donor I may ask what we would need to do for those of you who would liked to be tested before we even consider the cord blood. Who knows of you could be our own personal angel :-D
Other than that the only thing is Kyler is going through his SECOND round of this stomach virus. I feel so sorry for him but other than crying really hard today for about 5 minutes while he was cramping up he has been a happy baby. He loved on me afterwards like I was the one who had been hurting. I know every mom thinks this but he is the sweetest most perfect baby and he ALWAYS knows how to make me smile...and he's only 5 months old (well he will be on the 15th).We have an appointment monday so ill update then! Thank you to all of you for praying and keeping updated on Kyler..please continue to do so! We love You!

Tuesday, September 1, 2009

Kyler had an appointment yesterday and the good news is that his platelets have been dropping by about 10,000 every 2 weeks and they have only dropped 1,000 in the last two weeks. They are now 48,000. He still luckily has no active bleeding and hasnt been bruising two badly but he has had these weird little bumps come up on his neck and stomach. We took him to the pediatrician last week because he wasnt himself and he was VERY tired and cranky and seemed like he was really hurting. The ped said she thought he possibly had a stomach virus so yesterday when I showed the hematologist his bumps he said they looked like they were bumps that happen sometimes when you have a virus and it affects your skin. He feels a LOT better this week. He is eating SO good (he has started solids : cereal and baby foods). He LOVES applesauce and as strange as this sounds he loves green beans and prunes also. I thought I would have a tough time with those two especially since he isnt too fond of prune juice. He is growing up soo fast. Yesterday all of the nurses were commenting on how big he has gotten. OH! and he did GREAT once again with his blood tears or fussing..not even a whimper. He's my little trooper. =) It hurts my heart that he's growing so fast!! I know everyone says this but now I understand really does seem like it was just yesterday when we found out I was pregnant and now here he is eating solids sleeping in his own room and walking in his Jeep walker. (tear) that im over my moment back to business =). We found out that the donors who have responded so far have not been a good enough match. A few more were supposed to be checked this week. They said they Know for a fact they could get a cord but they want a donor so that they can get extra stem cells just in case they need them later. With a cord its a one time use thing. But that is all we know so far..hopefully we'll know more by the end of the week! Ill let everyone know as soon as we get more info.

Tuesday, August 25, 2009

So we FINALLY got news..and good news at that. We found out that some of the donors have responded and we should hopefully be finding out something at Kyler's next appointment (which will be next monday.) YAY!! =) Okay I know I am probably going to sound paranoid but I am sooo worried about this whole swine flu thing. So many children around my area have had it and 20 people had to check out of a school nearby with it. I am sooooo afraid of him catching it so I have personally put him and me on house arrest. The only thing is, though, that my husband still has to work so he will still be out there around all of this. But hopefully by Kyler and me not going anywhere that will help cut down on his chances of getting it. I am really worried about it though. Everyone PLEASE pray that he doesnt!!

Tuesday, August 18, 2009

I forgot to mention...

I forgot to tell everyone yesterday but the results came back on my tests and it turns out that I am not the carrier or WAS. So there is a 97 % chance that Kyler didnt get it from me. It was more than likely a spontaneous malformation of his X chromosome. That means that we can have more children who more than likely would not have WAS. They did suggest, though, that we have any future children tested for it just to be sure.
Also, at our wedding this past saturday Kyler helped hold the rings and it was soo cute..he did such a great job!! He is also trying to sit up on his own! Hes growing up toooo fast!

Monday, August 17, 2009

More News....

Today we went to see Kyler's Hematologist because he wants to keep a check on his blood levels. Well his platelets are down to 49,000 but they dont want to start blood transfusions yet because they dont want to introduce to many antibodies to his system. The doctor said he looks great and he doesnt have any active bleeding and so far hasnt had any bad bruises (which is great considering that he is starting to play rough and kick and throw his self around) so they dont feel like he needs tranfusions just yet. He did great again today having his blood taken. He didnt laugh like last time because he was getting really sleepy but he didnt cry or whine or try to pull away and they had to take it from his hand which usually hurts him. I just feel like mentioning how perfect and sweet and good my little boy is. All of the nurses and doctors talk about how outgoing and good he is and they have all fell inlove with him which makes his appointments more fun for him. One of the nurses even calls him "her little boyfriend." Hes a BIG flirt already :) But..other than his blood levels I dont have any more news..The stem cell nurse said that so far they havent heard anything else about the donors so they more than likely havent gotten back intouch with the association. Hopefully Ill have more news soon! Until then (and even after) Keep him in your prayers :)

Wednesday, August 5, 2009

Good News!!

Monday Kyler had a check up to see where his platelet levels are..well his platelets have came down to 56,000 which isnt great but isnt horrible either. We just have to make sure he doesnt bump his head. The good news is that we found out that they have found a few "potential" donors so now we are just waiting to see if any of them work out. Another GREAT thing was that monday when he had his blood work done he laughed soo hard the entire time and it was like he never felt the needle or anything. He had the nurse and me laughing so hard we couldnt breath. It made my whole day perfect because he didnt seem to feel any pain. You wouldve thought she was tickling him rather than sticking him. I just want to mention again how greatful I am to every one thinking about him and praying for him...I really believe that monday it wasnt just a coincidence that he didnt seem to feel pain because he usually screams and cries. I know every ones prayers are being heard and I really believe that monday was God's work. I will update the blog when we know for sure we have a donor but in the meantime please keep him in your prayers.

Friday, July 24, 2009

By the way....

So far we havent heard anything about a donor, but we didnt expect to this early anyways. I dont know if I mentioned this before but there is a chance that I am the carrier of WAS. If I am then I really probably shouldnt have any more children because there is a 50 % chance they would also have it. If we had a little girl she wouldnt have the disease but she would also be a carrier. If we have another boy and he has it we would have to go through the same thing again. I am actually going to the doctor monday to be tested to see if I was the carrier. I wont have the results for a few weeks though, but no rush because we definately arent planning on any more babies in the near future.

More Kyler news: Everything is pretty much the same...the rash hasnt really gotten better or worse but he has gotten a little better about taking his baths. He still hasnt had one of his fits in a while which is a big plus. OH!! and he has now moved up to drinking about 7 oz at a time instead of 4-6. This is a good thing because I want him to stay as healthy and chunky as possible until we find a donor. He is also getting better at sucking just his thumb rather than trying to stick his whole hand in his mouth. Its soo cute..I keep trying to get a picture for everyone to see. When he gets ready for a nap or bed one arm goes behind his head (just like he slept in my belly) and the thumb on the other hand goes in his mouth. He does something adorable every day :)

Tuesday, July 21, 2009

Our first Stem Cell Doc Appointment.

So, what has happened so far...Yesterday July 20, 2009 We met with his hematologist and he set us up to have Kyler's HLA typing done and then we went to meet the stem cell doctor. In ways we had been hoping that he wouldnt have to have a BMT right now but when the doctor told us that there was no way he would grow out of it and as time went on it would only get worse we decided that it was definately better to do it now. So they went ahead and put him on the donor list for both a person donor and for a cord blood donor.
So here is about what we can expect at this point... Right now we are waiting on a donor. If they find a cord blood donor the process could go a lot faster, but if they find a person donor they will have to contact the person to make sure they still want to donate, then have them have their blood work and HLA done again to make sure they are a perfect match then they will do the donation and it will be sent here. When that happens they will call us and Kyler, me and Coty will move into the hospital. For the first two weeks they will do some VERY strong rounds of Chemo to wipe out all of his cells his immune system etc. Me and Coty were told that we will be able to switch places or we can both be there all the time but no one else will be able to come see him and of course if either one of us is sick we wont be able to see him either. Okay, so after the chemo is done they will give him the donor marrow or stem cells. We will be in the hospital around 4 to 6 weeks and if he is doing well then they will let us come home since we only live 30 minutes away. They will start out seeing him every day and eventually once he is past the chance of infections or complications they will taper off visits until its down to once a year.
With that said..even though I hate to even think about this I have to be honest with everyone. There Are risks with having this done. First of all the chemo is going to destroy his immune system which makes him much more likely to contract an infection. There is also the chance that his body could reject the donor marrow or the donor marrow could reject his body. The best match would have been a sibling but since he is our first baby the next best match is an unrelated perfect match. The family would be next to last and me and coty would be very last to even be considered. Also, there are risks of infection during the whole process because of tubes etc that he will have in him. ALL of his cells have to be dead or they could come back and pretty much take over the donor marrow and he will still have the same problems, that is why the chemo must be so strong.
For anyone who may be wondering why we still decided to go ahead with the BMT... First of all We love our baby with all of our hearts. He is our whole world and even though we will have to see him go through this, and yes it is going to be a very long difficult process, it is by far the best choice for him. Heres is what could happen if we didnt have the BMT done...first let me mention that even a healthy childs immune system gets weaker as they get older, so you can imagine how an already sick baby's immune system will be as they get older. He could be fine for months or even a year but he will get worse as he gets older. There is a chance that when he starts crawling, if he doesnt have the BMT, he could bump his head and cause his brain to bleed. IF he was fine until he started school he could catch a cold from another child and end up in the hospital. He would never be able to do things healthy children do like play outside or play ball or be around groups of people. Although I know this is hard to hear, because it broke my heart to even think about there is also the chance that if we dont go ahead with the BMT he could develope cancer. The risks of not having the BMT are much higher than having it which is why me and Coty decided to go ahead with the process. I have no doubt in my mind that he will do WONDERFUL!! He is the strongest little boy both physically and health wise that I have ever known. When he was born they expected him to have to be in the NICU and on breathing machines but he faught his way through it and was in our room in an hour. He has Coty's strength and my stubborness :) and with that combination I know he'll be okay. PLUS...I forgot to mention and this is VERY important, the doctor even mentioned how healthy he seemed compared to most WAS babies, so she is hoping that since he is so healthy other than the WAS that the process may be a little easier for him.
Well he is waking up crying for mum mum so I will update you all later!

Saturday, July 18, 2009

Our Happy Little Boy!

Okay, so this has nothing to do with Kyler's treatment but it is just something I wanted to mention. He has been in such a GREAT mood the last 3 days and its been a week since his last episode where he just screams and cries because he is hurting from the rash and his tummy problems. He has been laughing and playing and it makes me so happy to see him smile!! :)

Friday, July 17, 2009

This is Kyler in his Bumbo seat. (far left) Then in the middle is him raising up.He already tries to push up on his knees. He has been lifting his head since the day he was born and it didnt take very long for him to hold it up on his on. On the far right is him relaxing with his daddy. They watch hunting together all the time and Kyler LOVES to just sit and stare at his daddy's deer head that hangs on the wall.

Some pics of Kyler

He is the sweetest baby! Hes giving me kisses!!

He use to LOVE his bath and loved playing with the towel even more. Now, though, he has developed a rash on his belly chest and back (related to wiskott aldrich) and he hates his bath. Im sure that it stings the rash. He also cries when I have to put vaseline and lotion on him. It makes me want to cry with him. I wish I could through all of this for him.

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!!