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.