Kyler and Wiskott Aldrich Syndrome

1 YEAR POST BMT!!! :)

2011-03-11T10:57:00.000-08:00

As of today our sweet baby Kyler is 1 year post transplant!! YAY!!
Im going to start this update with just a catch-up/ reminder on what all he went through to get here:
-8 Days of chemo (3 of which was ATG which was VERY rough on him)
-11 surgeries to this date. ( He will have 1 more & we hope that is all)
-The Transplant itself (which was a female cord from Europe that was a 6/6 match and same blood type)
-SEVERAL CT scans, Xrays, and ultrasounds
- 3 Double Lumen Hickman line, 1 femoral line,1 port & several IV's and blood draws
- 3 Staph infections (one of which was in his lungs & VERY scary & required oxygen through a nasal canula) & a rare sinus infection.
- Possible GVHD of the skin
- SEVERAL medications
- 2 feeding tubes
- 3 & 1/2 months in the hospital and readmitted once.

Our sweet Little Boy has been through so much, but he has stayed strong and amazing through all of it. We are so proud of him and unbelievably blessed to be his Mommy & Daddy.
Now an update on how he is doing now. At his 1 year appointment all of his labs looked good. They gave him what they HOPE will be his last dose of IVIG. We wont know for sure though for a couple of months. We have to see how his body responds when he isnt getting IVIG and then the next test of his immune system function will be when we start getting him revaccinated. They are hoping to get his port out in the next couple of weeks or so. For the time being we are still to use the same precautions; Not being around sick people or dogs. He can play with chidren BUT only if they have not been sick or had shots lately. We were told to be very cautious for things like chicken pox etc so it is best that he isnt around children who go to school, daycare, etc because we dont know what the children around them have or could have.

On another note; It is so hard to believe that my sweet little boy will be TWO years old next month. It seems like just yesterday we saw him for the first time. He is learning so much! He is the sweetest, funniest, most loving little boy. I cant say enough how much I love him and how blessed I am to be his Mommy! Thank you all so very much for your prayers & please keep praying!

January 1st 2011

2011-01-01T17:45:00.000-08:00

Hi everyone! Thought I would start the New Year out with an update on my little man Kyler. Firts of all, he is off of ALL his meds except IVIG, bactrim on weekends and megace (his appetite stimulant). So far he is doing really great! His immune system function test came back great. One part of his immune system (immediate response I believe it was) is still lower than normal but the rest is doing great. He does have a few signs of GVHD such as slightly elevated BUN and EOS but he isnt showing any other signs of it. We really hope he doesnt have it. Right now the doctors are just watching for any further signs. If everything continues going well then he should have his post transplant tests done, Last dose of IVIG and port out in March and he can finally experience all of the things kids his age get to experience. We cant wait for him to get to play with other kids :)
We all had a GREAT Christmas. His room looks like Toys R Us exploded in it and I LOVE it!! Im so glad he had a huge, fun Christmas. He definately deserves it.
He is walking GREAT now and has started eating only real foods (no more baby food) and we are about to start getting serious about potty training. Im hoping it goes better than I think its going to :) We are so proud of him and love him so much!! Cant believe he will be 1 yr post transplant in 2 months and 2 yrs old in 3 and 1/2 months. Hes growing up too fast!! OH!! And he told me today for the first time that he loved me. He held my face in his hands and said "I lu you momma" and kissed me on the cheek! SOOO SWEET!!! :) I love him so!! <3

more BMT pics

2010-10-13T10:56:00.001-07:00

transplant pics. Way Overdue!

2010-10-13T10:49:00.000-07:00

Just some pics

2010-10-13T10:41:00.000-07:00

So far so Good! :)

2010-10-08T12:49:00.000-07:00

WOW!! It has been a while since I have updated. SO much has happened...but Ill just try to keep it to the basics.
First I'll talk about health related issues: Kyler is doing great! He is being weaned off of his immune suppresants and is down to 2 meds during the week and 4 on the weekend (still has Bactrim and Zofran on wknd). The results from his immune tests were MUCH better than they were 3 months ago. Still not 100% but MUCH better :) Everything else seems to be moving right along perfectly. Its amazing to see my little boy with 400K platelets. He can play as rough as he wants and I dont have to worry as much.
Now..The Fun info ...He is growing up soo fast and he is soo funny!! He is learning to say the most hilarious stuff!! He is almost walking...He gets excited and starts running and falls down. He is doing great though pushing his little push and walk toy. He is still just as amazing as ever!! I am soo proud of him and love him so much!!
Other than that there isnt much else...well, there is..but I said I was keeping it short! I could talk about my sweet little man ALL day!! :) He keeps us laughing!! I am going to attempt to include a photo..There are TONS so I am going to just pick a good one (Well, to mommy they are ALL good :) )

Back home..

2010-07-27T08:33:00.000-07:00

We came back home last wednesday, after a week and 1/2 in the hospital. Kyler had his double lumen (CVL) removed and had a port put in. He had ups and downs with fever but after about a week his fevers stopped. He started eating and feeling better so we got to come home with oral antibiotics. He still doesnt feel completely like himself but hes getting there. Its taking a while to get him to crawl/ try to walk but we are definately making progress. He is eating GREAT!! Even better than he was before we went into the hospital this time. Hopefully having the port will cut down on the chance of him catching another infection like that. We are praying that that was his last inpatient visit to the hospital. We go back to the doctor Thursday so we will know how much his counts have came back up etc. He is still just as sweet as ever. please keep him in your prayers.

Back at Childrens

2010-07-13T09:40:00.000-07:00

Sunday night at 11pm our sweet baby Kyler started vomiting....well, like I always do when he seems outof sorts, I checked his temp. It was high for him but not fever yet so I continued checking it and by 11:15pm he had thrown up several times and his fever was 100.7 so we brought him into childrens. By the time we got here his temp was already 102.8 and they did cultures which had already grown by 2am. He had a gram negative (not sure exactly what yet bc results arent complete) infection in his line and blood. They started him on 3 very strong antibiotics and yesterday (monday) they did surgery and pulled the line. He now has IV's in both feet and one in his arm. He has had constant high temps and has been a miserable little boy up until a few hours ago. His heart rate was super high the first night but it had went down by last night. The nurse and I sponge bathed him and changed all of his bedding and then I finally got to hold him for the first time since sunday night (which I slept with him all night sunday night both in his bed and on my cot. He wouldnt even lay down that night unless he could atleast touch my hand or something) ...after his bath and everything he sat on my lap and we went to the window and I opened it so he could see out. Then he fell asleep on me and when he woke up he smiled and said hey momma...and then said dadda and looked around like he was looking for his daddy. That is the first time he has talked (other than when he has cried for his mommy when they are doing stuff to him which breaks my heart bc I cant make it just go away) since sunday and he even smiled and giggled a little.HOPEFULLY things are headed up from here on out. As always, he has been so strong. Please keep him in your prayers.

Day+101

2010-06-21T12:44:00.000-07:00

Quick update. Most things are going great with Kyler. However he has a rash on his back chest stomach and legs that they thought was GVHD. Well, the one on his back is infected with staph and possibly also has a viral infection in it (the rash). We will be finding out the final results on thursday and if it is viral we will be admitted to the hospital for strong antibiotics. Right now he is home with strong antibiotics.
Other than that he is doing great! He is still working on walking and is doing great pulling up and attempting to walk. We are so proud of him. He is so happy and sweet.
Not much else health wise has changed. He does have 317K platelets now which is GREAT!! We are super excited about that. Well, I will try to update when I find out any more results. Please keep him in your prayers.

Day +89

2010-06-09T09:33:00.000-07:00

Well I havent been able to update in a while. Things have been busy with the move to our new house, Kylers doc appts etc. This is going to have to be a quick one too. So far things are going well. Kyler does have stage 1 GVHD of the skin but everything else is great. He LOVES pediasure so his nutrition levels are good and his counts are great. Platelets were 290K at the last appt. Right now we are treating his GVHD with cream and an extra immune suppresant. Hopefully this will help. We want to avoid steroids etc if at all possible.
He is getting so big. He is starting to try to walk on his own and is learning so many new things. He is still super cute :) He is so funny and sweet and Im so glad to see him happy and able to play on the floor without me stressing. Platelets and an immune system are amazing :) Well Now that we are home I can finally include pics. There are so many from the hospital I would LOVE to post but that would take a really long time so I think I will just post a new one. Thank you all for your prayers and thoughts, and please keep parying for him...He isnt out of the woods yet but so far we are on the right track.

Day +73 Still home:)

2010-05-22T16:23:00.000-07:00

So very quick update.We have officially been home for a week now. Things are good so far. Kys appetite is increasing some with the help of an appetite stimulant. He may have Cdif again we are still waiting on the results but everything else seems to be going good :) He is already down to only having to go to clinic twice a week which is great. I just hope things continue to look up and he continues to do so well. There are a few things we are watching but Ill get into that more if it becomes a problem. We are LOVING being home. He has slept so much better had less sinus issues and just had so much more fun :)
In other news we will be moving into our new house next wknd and are super excited. :) Kyler went to it today and LOVED it :)
Well thats my quick update just wanted to let everyone know that for the time being things are calm and good for Ky. Please pray in continues to stay that way :)

day +66 WE ARE GOING HOME!!!!!

2010-05-15T03:14:00.001-07:00

I am up at 5am updating and hopefully will soon be getting ready TO GO HOME!! WHOOHOOOO!! :) We are suppose to get to go home some time this morning if everything goes well and as planned. WE are ALL THREE super excited! Cant wait for Ky-man to see the outside world again :) Please pray he continues to do well..No GREAT once we get home :) We were told and we know to expect atleast one readmission but we are hoping he surprises us all and does wonderful and never has to stay another night here.He's definately had his share of hospital stays and he been a trooper through it all. Hes such a strong little boy and we are so proud of him. Please keep him in your prayers :)

In other news...Gene Chizik (Auburns coach) came to see him thursday and took pics with him and us. It was SUPER exciting! He and his wife are VERY sweet/ great people. This last week has been one of the best weeks here. Hope it only gets better once we go home. :)

Day +63 Things are looking GREAT!!

2010-05-12T13:38:00.000-07:00

Okay, so I am going to start this blog by listing some AWESOME facts:
1.) Kyler is eating and drinking on his own w/o the feeding tube (this past saturday he decided to throw it up and has had a much better appetite since:) )
2.) Kyler is on ALL oral meds and is doing AMAZING with all of them EVEN the Cyclosporin which they warned us he may either, not take, or throw up. he drinks it like its juice :)
3.) Kylers counts are AWESOME!!! Platelets are 187K and white blood cells were 9K
4.) We MAY be going home soon if he continues to eat/drink and get enough nutrition on his own.
5.) His sinuses are MUCH better :)

Now, How it all came about because is it a very interesting story :)
Kyler had his TP feeding tube (which goes deeper than a NG tube) placed two tuesdays ago. Well by the end of the day he had thrown up so much that we just knew it was NG again. Long story short they managed to get his feeds up to 40ml/hour after two weeks. This past weekend he was very nauseated and was throwing up a lot. The tube then proceeded to get clogged up. They had an xray done to see what position it was in and to our amazement/ shock it was STILL TP!!! That was on saturday during the day. Well, Saturday night Kyler threw up FOUR times which was a lot more than he had been recently. I got up with him to do my routing diaper change around 2am and he started vomitting for the fifth time. Well, as we always do I was holding the tube and having to push it back into his nose every time he would gag/vomit...I looked down and here the tube comes OUT OF HIS MOUTH!! I called the nurse and in the meantime I pulled the tube completely out through his nose. As soon as the tube was out he was SUPER thirsty and drank 3/4 of a caprisun. The next day he had a small appetite and by monday of this week he was eating/ drinking like a little piggy compared to what he had been doing. Coty and I and the doctors were SUPER exicted!! He has done so welland as mentioned before yesterday he was put on ALL oral meds other than his antibiotic.
Now, about going home. WE MIGHT be going home earlier than originally suggested or it could still be next week. We have to do several things to go home. We have to make sure his oral cyclosporin levels are good,make sure he is getting enough calories/fluids and do several "check out" things such as tutoring about at home care (even though we had been doing most of it before all of this) ordering certain things (like his ID bracelet which super-mommy (me) has already ordered LOL ) and we have to make payment arrangements etc. Other than that we are one foot out the door and let me tell you...I truelly believe the day we leave Kyler will miraculously start walking/ running to the car LOL I know he is JUST as ready if not more to get out of this room as we are.We are so proud of him. He has done amazing through everything!! He is my little trooper!
With that said...just some extra "notes"....He Is Not out of the woods yet. For the next 6 months or even a year ANYTHING can happen.Even though his WBC's are great he Does NOT have all of his lymphocytes back yet which are his viral fighting WBC's. He is on an anti-viral that he will go home with but that wont completely block out viruses. We really dont want that sweet baby to be back here after everything hes been through so as much as we want everyone to see/ love on him we are asking that everyone remember his health comes first and he is not 100% yet, so we will still be as careful, well actually more so than we were pre-transplant. It isnt anything personal...but our little Kyler monkey is the most important thing in the world to us and we wont let anything jeopardize his health and everything hes been through. Once everything is almost back normal we would LOVE for everyone to come see him love on him etc. We will be letting people see him, we will just be VERY particular about colds/viruses other children etc,and we will let people know when we feel he is ready for visitors.We want him to get settled and make sure going home doesnt reverse all of the good things weve , well actually HE has accomplished. Thank you all for your prayers and encouraging comments through all of this. Love you all!

Day +52 Still at Childrens

2010-05-01T19:02:00.000-07:00

Well, We are still here. We Were going to be going home this week but they found the cause of Kylers sinus issues. He has a very rare, odd bacterial"Bug" that takes 6 months to a year of treatment to kill. Well, I.D came up and said they want him on 6 WEEKS of I.V antibiotics. Since he has already been on three that means we need to stay here for 3 more weeks. The good news is that it is NOT contagious and the even better news is that as long as we are treating it and not letting it go crazy then it is not dangerous for him. He now has a TP tube and is doing very well with feeds through it but the meds still make him a little nauseated. The meds are getting better too though. Atleast we have 3 more weeks now to maybe get him eating so that we dont have to go home with the tube. Other than that all of his medical stuff is the same. He is producing platelets now ON HIS OWN!! WHOOHOO :) His platelet count today was 101K and he hasnt had a transfusion in 2 weeks! YAY!!! That was a big plus :)So far everything else is going good. He has had a lOT of diarrhea due to the fact that his stomach is "learning" how to work again so that has made his bottom extremely sore even with ointment so now he hates getting his diaper changed. He does, however,LOVE his baths again and he showed it by giving me a bath tonight with him LOL It was so GREAT to see him splashing around and playing in the tub again that I just sat there and let him soak me and I loved every minute of it bc he was sooo happy!
He is doing really well with his walking. We still have to hold his hands but he is getting braver and tried to let go and the other day he stood all by himself for about 20 seconds. It wont be too long before hes walking..wait RUNNING LOL out the door :) He gets excited when they let him out of the room and he always tries to escape if he can. hes TOO funny! He is also saying a lot of new words and has all kind of cute new things he does. I still cant believe he is 1...My baby is growing up sooo fast! Gosh I love him so!! Well, we are going to bed..I just wanted to do a quick update while he is sleeping. We've been having so much fun now that he gets to get off of the pump for 12 hours and can actually walk around and play without having lines hanging off of him, and I have completely forgotten to update. please keep him in your prayers and HOPEFULLY we will be home in around 3 weeks! :)

Day +42

2010-04-22T14:30:00.000-07:00

WOW! cant believe we have been here almost two months. Hopefully we will be home soon. We know FOR SURE that we will be here ATLEAST 14 more days. Possibly more. Kyler is having a procedure tomorrow to see what it going on with his sinuses. They are going to do an endoscopy on them and culture them and maybe even biopsy some of the tissue that they found on the CT Scan. They now have him on TPN for 12 hours a day (From 6am till 6pm) since he is eating some on his own. This morning his blood sugar dropped a little low and I heard him making a funny sounding whine around 6am so I got up and picked him up and he was sweating, and very limp and wouldnt sit up on his own so I paged the nurse but in the meantime I put his O2 monitor on, checked his BP, temp, respirations and heartrate. His BP and temp were low and he was freezing even though he was sweating. I told the nurse everything when she got in there and asked her to check his blood sugar levels and page the doctor. We ended up giving him some orange juice and 20 minutes later he was up laughing. The rest of the day has been GREAT!! He has been walking around playing and has eaten a little bit and we have played basketball (with his new b/ball set he got for his bday :) ) and he even got to walk about 2 inches out of the room and talk to everyone LOL. Healthwise everything is still pretty much the same. He is on a TON of allergy/ sinus meds and antibitiocs for his sinuses. Luckily his VRP was negative so he doesnt have a virus. His leg is doing much better. They pulled the drain monday and it is healing very well. He is doing so great so maybe tomorrow we will find out what is going on with his sinuses and we can get that fixed and start working on getting home. Im so proud of Coty and My little boy! Coty has taught him some VERY funny faces lately and I have taught him to blow kisses and do this super cute thing with his teddy bear where I tell him not to give Pooh Bear all of mommys love and he hugs him super tight! Its SO cute! But hes so cute LOL :) Well he is napping on my cot and im thinking I might cuddle up and nap with him since we had a long night. :) Please keep him in your prayers!

Day +37

2010-04-17T13:07:00.000-07:00

Quick update (and thats bc Im running off of 2 hours of sleep LOL )
Okay, so SO far Kylers VRP is negative. STill have 2 days before final results though. He is on more meds for sinuses and is on an antibiotic which should fix sinuses and his infection. Speaking of which last wed when they did surgery on his leg they found that is was a MRSA infection. It was an abscess that was infected. That same morning he had the endoscopy done (hope I spelled that correctly)..All they found was gastritis which the majority of post BMT patients have. SO with that said the best treatment is a medicine to coat his throat and belly and making him eat, and yes it has definately been a "making him" situation. I will say though that he has done WONDERFUL! Particularly today. He has already eaten almost a jar of baby food (which is HUGE for him) and hasnt thrown it up (which is even MORE huge). He has drank a little water and has kept his oral meds down. Yesterday was the first day we forced him to eat and it was a little rough. He kept it down for an hour then vomited it ALL back up. Then he was up all night (except 2 hours between 4-6am) crying with tummy pains. The thing that helped most was letting him lay flat on me, so He and I stayed up and watched cartoons all night. :) Today has been GREAT though!he also attempted to crawl today (which is good bc he HATES crawling) and he was doing really well but then he fell and pulled his CVL a little and got upset and refused to try again. I probably would too though LOL :) He has been asleep now for 2 and 1/2 hours so Im really glad he is catching up on some sleep. The biggest thing keeping us here is his infection and nutrition issues. Hopefully we can get those fixed soon
He had a GREAT birthday. I went and got him cupcakes and his daddy an ice cream cake. They both LOVED their presents which made me SUPER happy! :) He was doing so great that day with the nausea that I was able to dress him up in a blue striped polo and khaki shorts TOO CUTE!! (But I think he is too cute even in his yellow hospital gown :) ) They did a study that day and found that he is 100% engrafted. YAY!! That was GREAT news:)
Well, the update actually ended up being a little longer than I intended but he is so much fun to talk/ write about I always end up talking a lot :) That is the majority of the new info though. I will update when we know something new. Please keep him in your prayers and thanks to everyone for Ky and Coty's Birthday wishes! :)

Birthday Wishes!

2010-04-15T15:18:00.000-07:00

HAPPY BIRTHDAY TO MY AMAZING HUSBAND AND PERFECT SWEET AMAZING LITTLE BOY KYLER!!
Kyler- Happy 1st Birthday!! The last year has been the most amazing year of my life. I am so blessed to be your mommy. You have made me complete and changed me in so many amazing ways. I could never put into words how much I love you and how important you are to me! God new the huge impact we would have on each others life and I am so thankful every day that you are my little boy! You are so strong and amazing! You make me proud every day- actually every minute :)I am so excited about all of the years I have to watch you grow up!! You could slow down a little bit though :) Youre already growing up so fast! I have no doubt you will be amazing for the rest of your life!You have a place in my heart that is forever yours! As the quote goes "Children fill a place in your heart that you never knew you had" You definately have! God has big plans for you little boy and so does Mommy and Daddy so you keep on fighting and being strong for us! We Both love you so much! Not a minute goes by that you dont make us laugh or smile or make my heart happy! I LOVE YOU!!!
Coty- I fell inlove with you when I was 15 and barely new what "Love" was. It never went away and Im glad it didnt. It only got stronger. You make my life complete in so many ways. I know weve had our ups and downs through the years and broken a lot of hearts (esp each others) but we made it through and I feel like we are right where we should be! We made a beautiful baby together and now we have our own perfect little family! I look forward to many years together watching our Children (yes plural..there will be more ;) ) grow up! Weve come so far and changed so much from the 15 and 16 year old who use to fight over who loved who more...Oh wait we still do that :) Weve always came back to each other no matter who or what got in the way, and I think that was God's plan. He knew we were meant for each other and nothing can change that! I LOVE YOU...MORE :)

Day + 31 and Day +32

2010-04-11T19:48:00.000-07:00

So far Kyler is doing good. They took him of of GCSF so of course his counts dropped but they are working their way back up on their on. His platelets are starting to hold a little better and so his his HGB. The biggest issue now is the nausea/vomiting. The doctor has decided that he is going to scope him this week so we can find out what is going on so we can hopefully start treatment, get him back on oral meds (they were oral then had to go back on I.V) and then hopefully get home so that the Three of us can have our family time together at home :) I am so ready to take him outside to play etc (which it will be a while before he can go anywhere.) I was strict before his transplant when he had some immune system. Now that he has very little immune system Im going to be super strict :) The doctors said to expect it to atleast be 6 months or so before he starts being able to go places, around crowds etc. Thats ok though. Mommy and daddy can find plenty of ways to make home fun for him :) I think he will be so thrilled to have the whole house to play in instead of one room that he wont even notice that he isnt getting to leave for a while :) This week they are going to do a test to see how many donor vs his cells are in his body since it is taking longer for everything to come up on its own. They dont expect there to be any issues with that though. As far as everything else goes, he is off antibiotics, almost off pain meds, and is only on his important meds. (Anti GVHD anti fungal anti virul) and his stomach meds (which there are quite a few of those)
Now fun information. I finally taught him how to blow kisses :) He can now stand up by himself (well holding on to something) for a few minute before he starts losing his balance and today he walked from side to side of the cot holding on to it. Super cute!! He can say "Night night" even though he very rarely actually goes to sleep after saying it LOL :) He is getting SO big!!! I cant believe my precious baby will be 1 year old thursday (The 15th). This year has flown by. It has been the best year of Coty and MY life :) OH and the other day his doctor came in (who he loves) and I kept saying "theres Dr. G" and Ky started saying doc doc doc when he was leaving :) There has been a LOT happen but I havent had time to update in a while and its too much to type :) I included the basics though:) Well, Ky was asleep but then they gave him ativan and now he has his happy going and is calling for mommy so I better go! Ill update when I have a chance. :)
Okay, Well I typed the above part yesterday and forgot to post it, so I just added todays to it :). Today Kyler had an NG tube put in. They are hoping his stomach just needs to be stimulated since it hasnt been used in a while. If this doesnt work then they will do the Scope.He did GREAT with the Tube. I played with him and they cuaght him off guard and just put it in. He didnt cry or anything, Just sneezed a lot and as expected he vomited quite a bit afterwards. I was so proud of him though. They were shocked at how good he did. I joked and told them they should be use to how good he is by now. We make a good team...I keep him distracted and he lets them do pretty much whatever they want as long as I stay with him. :) If the scope doesnt show anything they will have to do a more permanant tube. His counts are still coming up. OH And I realized I forgot to mention that his lungs were all clear on the CT scan YAY!!! That was a HUGE deal I just didnt realize I hadnt updated since then. Ive been busy playing with my little boy :) Other than that nothing is different today from yesterday. Please Keep Him In Your Prayers :)

Day +25

2010-04-05T10:46:00.000-07:00

Kyler had his CT scan this morning. Now we are just waiting on results. Hopefully they will all show clear. His WBC's have slowed down increasing but everything is still going good. His blood pressure is a little high but thats not surprising considering some of the meds he is on. He has some blisters on his leg from where they had to put pressure tape where the femoral line came out SO now we are trying to get that cleared up. They have contacted the burn unit so they will probably be coming to look at him. Other than that everything is the same from the medical aspect.
From the "learning" aspect Kyler is loving his new sippy cup which is GREAT!! This morning he drank a WHOLE cup of water. I was SUPER excited. That puts us one step closer to eating thus coming off TPN and getting on oral meds Thus going home :) He had a lot of fun getting out of the room today to go down to CT. It was so cute. He is standing better and learning to transition from sitting to standing back to sitting. I am so proud of him.
He had a fun Easter. He had an Easter basket and a bunny and books and a new leap frog cell phone. He was a little tired and ill yesterday but he did seem to have fun. Esp with the paper from the Easter basket :)
Hopefully we will know more about the CT later and tomorrow we will have the upper GI and know more about the nausea and vomiting. Things are overall looking good. Weve had two good nights of rest so thats a plus since he is usually very tired during the day after vomiting all night. He is still super sweet as always and gives us lots of love and hugs :)
I will try to update when we know more about the scans.

Day +23

2010-04-03T19:31:00.000-07:00

Kyler has rested a lot today. Yesterday (Day+22) he had his CVL put back in and his femoral line removed. We had a few issues last night with the line that was removed. The area didnt want to clot and continued to bleed. He ended up getting 3 platelet transfusions. It ended up not being anything to worry about but it concerned us none the less. I actually helped hold pressure on it during one of the moments when it decided to start squirting blood.By this afternoon, however, it has quit bleeding but the pressure tape had left blisters so now we are treating those. He did so good during the dressing change. He just laid there and held my hand and played with me. Hes so strong :)
The line itself seems to be good. They x-rayed it to make sure it was in a good place. They had to go a little higher with it and tunnel it a little differently because there was a little blockage in the right side of the vein. They said he did GREAT during surgery. Last night his temp got back up to 100.1 so just to be safe they started him back on another antibiotic (hes still on vanco also) and they did cultured just to be sure it isnt another infection. He was up nauseated most of the night but he has rested very well today and at this moment is playing and making us laugh. They gave him ativan a little while ago and that is his happy med so he is doing pretty good right now :)
As far as the nausea goes: The GI doc came by today and checked him out and said trhat tomorrow she and the attending GI doc will come by and more than likely they will do the scope on him next week (Go down into his stomach with a camera). They doc mentioned that there is a POSSIBILITY of GVHD of the gut BUT all of the lab work suggests that he doesnt have GVHD. We will know more after they explore his tummy. Hopefully it will be something simple to fix. In order to get to go home he has to quit throwing up and be able to take meds and hopefully food by mouth. He was able to keep water down today but he threw the pediasure back up again. He is doing much better with a sippy cup than he was 2 days ago though.
His WBC's are lower than they were yesterday but nothing to worry about. Things are still looking good. He is super sweet as always. He got out of bed once today to sit in my lap (in a chair right beside his crib) and read a Dr. Seuss book. I have come to really like them LOL :) He woke up a couple of times today and kept us laughing EVERY time. He always does. :) I will probably update when we know more about the possible infection and GI issues. We will have some scans monday so hopefully we will know more by then. Please Keep Him In Your Prayers :)
Sumathi- Just wanted to say thank you for all of your comments :) I have been meaning to email you BUT I get so busy and I dont usually even have time to do this until Ky goes to bed. When hes sleeping Im cleaning and when hes up Im racking up all of the play/ cuddle time I can get :) I hope everything is going great with you all!! TTYS! :)

Day +21 We have Neutrophil Engraftment YAY! :)

2010-04-01T13:17:00.000-07:00

One of the big days is finally here. Kyler is considered engrafted (from the neutrophil perspective) He is doing so good :) He had a much better night last night. They started another med to help take him off of the morphine and it seems to be working. Now we are trying to find out what is causing the nausea so they are playing around with the meds (increasing/decreasing/"dc-ing" etc) If we dont find out something that way they will take more measures to find out why he is still vomiting. The other news for today is that he has to have surgery tomorrow. They are going to put his CVL back in and take out the temporary line that he has had. So please say a special prayer that the surgery goes great and that hopefully this is our last surgery for lines (That is until it comes out for good :) ) They did an ultrasound to find the best place to put the line to try to avoid any further problems. STill no fever and he's still doing great oxygen wise. Next monday he will have another CT-scan to see if he still has the lung infection and those results will decide where we go from there as far as antibiotics etc. Hopefully it is all gone:)
Some fun news: He and I have been working on his standing/ walking/ pulling up etc. Well today he decided to pull up on the side of the cot by himself. YAY! Go MY Sweet baby :) He has kept everyone laughing the last few days. He is so goofy! Also now he not only know how to say "Bye" but he knows when to use it and it makes him so proud! Makes us proud too :) Everytime someone leaves (and even when hes ready for them to leave) he waves and says "Bye" He took out the second bye LOL :) He decided today that he was going to give me a TON of kisses on my cheek which was super super sweet! He's my sweet baby :) He's not a mommys baby at all ;) lol Coty has taught him the "rain dance" and he has it down pat now so I have video taped him doing it. TOO CUTE! He took a few sips of pediasure today and the even better news is he kept it down. Things are going good!
BEE- To answer your question- It looks like we will be here another 3-4 weeks or so but Ky's counts arent as high as Max's BTW CONGRATS YOU GUYS!!!! SOOOO Happy for you :) Lots of love for you guys! But, we also still have the issue of Kyler nausea and he needs to be able to take some oral meds before we go home. As you probably already know he can go home on TPN but some meds pretty much have to be oral. So I think we will be here a little while longer. What about you guys?? Any talk of going home yet??
Well, I better go I think my sweet baby is waking up from his nap and we have a Dr Seuss book calling our names so I am going to get everything ready to read to him. Please keep him in your prayers:)

Day +19 Another High ANC

2010-03-30T13:59:00.000-07:00

Kyler's ANC is 673 so that means two more days with the same counts and he will be considered Neutrophil engrafted! YAY! We are super excited! He still needs more WBC'S and platelets but they said it looks like he is even holding on to his platelets more so than before which is great! Everything seems to be going good. He is only on half the dose of morphine that he was on and his body is sore from the engrafting and the GCSF whch aids in engraftment and make their bones hurt so when he starts aching he gets a little ill but everything else seems to be going great!! He was up happy and playing for 8 and a half hours today before he was ready for a nap. He is definately feeling like himself again :) Other than that things are staying the same. Please keep him in your prayers!!

Day +18 GREAT day!

2010-03-29T11:01:00.000-07:00

I havent updated in a while because things have been going good and have stayed the same the last few days. He hasnt had fever since last wednesday(which was the day they had predicted that his lungs would be so bad he would be in the ICU ) (Day +13) and hasnt had oxygen since last thursday (Day +14). They are cutting down on his meds especially his antibiotics and his morphine. He seems to be doing MUCH better! He has been waking up and playing and laughing and seems to feel a little more like himself again. It's SOSO great to see him like this again :) So, some POSSIBLE good news is that: for the last few days his WBC's and ANC has been on the rise. Well today his ANC is above 500 so if it stays that way for 3 days then today will be the official day of engraftment. I am super excited BUT I realize that in a matter of hours everything could change for better or even for worse. A few things we have got to work on now is getting his temporary line taken out and either a CVL or port put back in. They will decide which one based on rather or not it looks like he will be going home with TPN. With that said, we also have to start trying to get him to eat on his own again. A few things I am going to change, though, is that since he should be coming off of the bottle when he is 1 (WHICH BTW HE WILL BE IN EXACTLY 18 DAYS AT 4:38pm) I am going to start out with a sippy cup instead of a bottle. When he feels like it we also plan on trying to start practicing walking with him since he obviously has no use and/ or desire to crawl. I probably wont put him back in a walker since it seemed to make him want to walk on his tip toes even when he wasnt in it. A few other medical things that need to happen if he has actually engrafted is that in the next few weeks he will be switching from IV meds to oral meds (That part is going to be a little tricky.) So far everything SEEMS to be going great though! We are soso happy! :) He has kept us laughing the last few days when he is awake. He still sleeps a pretty good bit but he is having periods of time when he is awake and playful and happy. He's also still pretty nauseated..but that could be a mixture of things and should get better with time. I am SO proud of Coty and My little boy! I have been every day for the last 11 months and 19 days :) I have said this many many times BUT he is my little hero!! He amazes me every day! Thank you so much for all of your prayers! I know God has been watching over Ky and has taken care of him since day 1. Please keep praying for him! :)

Day+13 Another Great Day!

2010-03-24T20:11:00.000-07:00

Today was great. Kyler didnt run a fever at all today. He woke up 3 times to play instead of his usual once a day play time. He made us and all of the nurses laugh several times especially when he was trying to show them how to use the medical instruments and how to listen to his lungs. He grabbed the end of the stethoscope and stuck it to his belly for the nurse. It was HILARIOUS!! We all cracked up. He even felt good enough today to get an attitude and throw a camera because he wanted the cell phone instead. I must admit I was THRILLED that he had that energy again. LOL :) He was back to himself for a little bit today being goofy and making funny faces (esp his piggy face.) As far as his medical status everything is pretty much the same. His WBC's are up to 360 or .36, however you want to look at it. His lungs are still in bad shape. We took the oxygen off today just to see what he could do on his own since his lungs SOUNDED better but as soon as the cannula came off he went from 100% oxygen to 90% in less than a minute. That let us know that he definately still needs the help of the oxygen. Atleast for right now it is just the cannula he needs though. He was nauseated today but today is the first day he hasnt thrown up blood at all. Not even once :) He did have to have platelets because they were 19K and 20K is his parameters. His rashes seem to be getting better also. Hopefully all of these things are signs that we are headed towards better days:) We know that his lungs are going to get worse before they get better but hopefully not too much worse. Thank you for all of your thoughts prayers and cards. Please keep praying for him!

Day +12 Finally good News ! :)

2010-03-23T19:44:00.001-07:00

They decided NOT to do surgery tomorrow which was GREAT news. I was kind of concerned about Ky pretty much going through 4 surgeries all at one time. They decided it would be worse on him to do the biopsy and so they decided to wait to back in the CVL until next week when maybe his counts will be higher. They are going to treat the infection for both fungas and bacteria and they are going to watch it. Here is the POSSIBLE best part but it is JUST a maybe. Kylers counts are coming up and a lot of the things happening to him can happen before the new bone marrow gets ready to engraft. So, what does that mean? It means that POSSIBLY everything that is happening to Ky that they think is related to the infection, could just be signs that engraftment is around the corner. We are praying that that is the case. However, with that said..He still has some rough patches to come. His lungs are definately going to get worse before they get better. As his body begins to build back up neutrophils and WBC's they are all going to go straight to his lungs since they are a source of infection. WBC's job is to kill infection so that is what they will be trying to do. With everything gathering in his lungs it will make it hard for him to breathe and get enough oxygen without a little help. Today he was put back on the nasal cannula and will more than likely be kept on it until his lungs are completely clear. The doctors think that his lungs problems will be acute but they said it could go so far as to need a ventilator. Hopefully not but we will do whatever is best or easiest for Ky. This option is MUCH better than surgery at this point and time. We were so glad to get some good news and some possible even better news :)
As far as how he is feeling..Today was actually a good day. Last night was GREAT after a fairly rough day yesterday. This morning he woke up nauseated and stayed sick for longer than he usually does. He went back to bed around 9am and slept until 2pm when he woke up wanting to play. I brought him down to the cot with me and we read books and played with his play table and even some medical supplies :) (of course it was none that could hurt him). He played until around 4pm when he started getting tired again and he slept until we gave him a bath and then he went back to sleep. He hasnt only spiked a fever twice today but it hasnt gotten out of the 101's which is GREAT compared to recent temps he has had. He has only had Tylenol once today compared to the every four hour dose he has had to have in the previous days. He seems to be feeling somewhat better but he still gets tired very easy so sometimes he overdoes it. I am just so glad that he feels like getting up some. The next few days could and probably will get worse so I am glad he has had some good days in between the bad. He is holding a little more fluid and is more swollen today but he is still the most precious baby :) I have been taking tons of pics that hopefully I will be able to post at some point. Thank you to everyone for your thoughts and prayers! please keep him in your prayers :)

Day +11

2010-03-22T15:55:00.000-07:00

Today Kyler had Ct scans to see why he is still having fevers and ultrasounds for his liver. His live, head, pelvic area and abdomen came back great. However, He does have a lung infection that is either fungal or bacterial (which would be from the Staph) He will more than likely be having his lumen hickman (CVL or "central" line) put back in wednesday and the triple lumen removed so while he is under for that then they will do either a lung wash or a biopsy on the lungs to see exactly what kind of infection it is. Today he was taken off of blow by oxygen and put on a nasal cannula so that they know he is getting all of the oxygen. Once they find out exactly what is causing the infection they will be able to treat it better. In the meantime, though, they did go ahead and start him on an anti-fungal medication to start treating it since they are pretty sure that it is more fungal. Everything else is still the same. His WBC's are fluctuating from day to day and he had to have platelets today because they were down to 11K. His neutrophils are comig up some. They still arent high enough to actually "count" in terms of numberrs but they can be seen in the cultures which is great. His mucositis is at its worst but this is probably the worst it will get. Hopefully in a few weeks we will see engraftment. On a side note: Today he had his CT scan which children are sometimes/ usually sedated for because of the burning sensation that the contrast gives them. Well because of Kylers heart rate/ oxygen levels and pulse they didnt want to sedate him so he was wide awake. He did AMAZING!!! They let me stay in there with him and I held his hand and sang to him and talked to him and he only got upset once because they told me to hold his head and not let him move it and he couldnt see me but once I started talking again he was fine again. He is SUCH a strong little boy! They were all kind of surprised at how well he did with being still and the contrast not burning. He is a tough little boy! I know God and everyones prayers are helping him through this. Its helping all of us through this. Thank you all for your prayers! They really mean a lot! OH I got to love on him a LOT today which was GREAT! Yesterday he stayed in bed and slept all day and was only up maybe 45 minutes total but today he was wide awake after the CT scan and he wanted me to hold him the whole time so I got lots and lots of love and hugs! TOO SWEET!!! I love him SOSO much! :)

Day +9

2010-03-20T19:28:00.000-07:00

Kylers cultures for the Staph are looking much better today. They havent shown any growth yet, but they still could. They will watch them for 3-4 days before the technically say that Kyler is Staph-free. He has had his ups and downs today. He started out with a bad morning. He was very nauseated and in pain so they gave him meds for both. He slept until around 1pm and then he woke up and played and He and I read a book and he "Held mommy" as I say when he wants me to hold him :) I always say "Do you want to hold mommy" and he will reach for me if he wants me to hold him. It is soo sweet! He was so cuddly today which was great. I am so glad that he doesnt seem to be as sore. He laughed and played for a little over and hour and then the exhaustion set in again and he slept until 7pm when we had to wake him up to sponge bathe him (he cant have a real bath until the triple lumen cath is removed.) After his bath he got nauseated again so he was given more meds and he went back to bed. It was funny because today they showed us how to use the suction nozzle beside his bed to suction his nose and mouth and they thought he would be scared of it but I got it and I said "Can mommy clean your nose and mouth" and he would open his mouth and then close it on the suction and then he would lift his face so I could get to his nose and everytime he would let me do it I would tell him what A good boy he was and he would start laughing. He kept wanting to do it because I kept making such a big deal over how good and what a big boy he was. TOO CUTE! Overall, his fever has been BETTER but definately hasnt gone away. He has only had to have tylenol twice today, so that was good. Well, his machine is beeping and his lasix is probably kicking in so I am going to have to cut my update short. Main point is : He is doing better :-) Please keep him in your prayers!

Update on Line Replacement

2010-03-18T13:09:00.000-07:00

Ok, so they decided not to do PICC lines but to insert a triple Lumen Catheter into his groin. They removed the Lumen Hickman and inserted the triple lumen. He was sedated the whole time. The Triple Lumen can be removed much easier than the Lumen Hickman so as soon as the staph had cleared up they will remove the triple lumen and put a lumen hickman back in. They are keeping him on the Vanc and they are going to do x-rays to make sure the Staph hasnt spread anywhere else and also to make sure the triple lumen was put in place correctly before they start trying to use it. He has pain meds going into it right now and it seems to be working and they said so far everything looks great. I'm praying they are right and that our baby is staph free soon and everything can go back like it was with the regular line and I am also praying that the staph doesnt come back at a later time and doesnt continue to be a problem.
Kyler is sore because the catheter is in his groin right where he bends his leg. The main problem with where it has to be placed is that it CAN get infected when he pottys IF it gets up under the dressing so we will be being EXTREMELY cautious to keep that from happening. Praying that it doesnt, atleast until he is staph free and can get the other back. They are saying that it more than likely WILL become infected but that as I said before hopefully it wont be until Staph is gone and the Lumen Hickman can be put back in. I will update when we find out more. Please keep him in your prayers and thank you all for your continued prayers and thoughts.

Day +7

2010-03-18T09:20:00.000-07:00

Well, today and yesterdays cultures came back with news we didnt want to hear. Kyler has a staph (MRSA) infection in his Lumen Hickman (central) line and it is now in his blood. The best treatment is to remove the line and put in a temporary PICC line until the staph is cleared up with the antibiotic (Vancomycin) and he has a few more WBC's and then we can have another lumen hickman put into place. His WBC's came up a little yesterday but are back down today. That is expected though. The first few weeks their counts can go back and forth. Yesterday and last night were really good fow him as far as how he felt. Yesterday afternoon he raised up on his own and climbed into my lap and I read a book to him. Last night, after his bath, he was sitting on the side of his crib playing with Coty and me and talking and laughing and he even got to squirt saline out of a syringe (which he thought was the greatest thing.) We were so excited that he seemed to feel better BUT we knew that they have their "Up's and Down's" until they actually engraft. Well yesterday was definately an "Up" so today he is having a "Down." He is nauseated again today and seems to be hurting more again. He has been resting most of the morning. We are just waiting to find out what time today he will have the central line removed/ PICC line placed. Please keep him in your prayers! He is such an amazing strong little boy and has already been through so much in just the 1st year of his life. I love him so so much and I am so blessed to have him. I will update sometime after the line placement (depending on how Ky feels)

Day +5

2010-03-16T14:58:00.000-07:00

Kylers nausea is MUCH better! He hasnt had to have hardly any meds for his nausea today.His diarrhea has also been much better. He has also been awake a little more. He woke up and talked to me for about 5 minutes then he laid his head on me so we cuddled up on the cot and took a 2 hour nap together. It was too sweet! I love him so! He hasnt seemed to be in as much pain but he did have a pretty rough time with a fever last night and it has persisted today. They told us last night that his culture came back positive so he is on another (very strong) antibiotic. So, special prayers..That it clears up easily. So far everything else is good. His heart rate is a little high due to the fever and his blood pressure has been high a few times but nothing to worry about on either one of those yet. He is pretty swollen from all of the fluids but I must say he is still the most beautiful baby I have ever seen. He is starting to lose his hair at a faster rate so we got some to keep and put in his baby book. He has had meds added and DC'ed and still has his PRN meds. He's doing so good and as I have said so many many times...he is my little hero. He is such an amazing little boy and I am the one who is so blessed to be his mommy :) OH, extra note..I tried to post pictures but the internet here wont let me SO, there probably wont be pics until I can use another internet source. Thank you for all your cotinued prayers.

Day +3

2010-03-14T18:44:00.000-07:00

Kyler is still very nauseated. Now it is because of the mucositis that has set in instead of the chemo though. They are still keeping him comfy with pain meds and switching between benadryl and ativan for nausea. He has been sleeping a lot the last few days which is good though because we would rather him be resting that be awake and in pain. When he does wake up he does manage to give us a few small smiles. I am so proud of him and how strong he has been. he has had a fever today (after 2 days of not having one) so they did some cultures just to make sure he doesnt have an infection. They think that the fever is mainly because of his pain/ nausea. He had to have a blood transfusion and platelets today because his parameters were a little low, and he's on lasix now because his I's and O's arent equaling out. Other than that not much has changed. Hopefully he will start feeling better in a couple of weeks. I am going to post some picture on here that I have been meaning to post for a week now. Some are pre-BMT some are during BMT and some are after. Please keep him in your prayers.

Day +1

2010-03-12T10:31:00.000-08:00

Last night Kyler woke up throwing up three times but as soon as I would clean him up and pick him up to rock him he would fall right back to sleep. He was given benadryl but it didnt help for to long. This morning he slept on me from 6 until about 7:30am when he woke up nauseated and threw up again. They gave him ativan at that point which helped a lot. It always relaxes him and he will play and laugh after he gets it. He has had some diarrhea from the chemo but we are keeping him covered in cream so that his bottom wont become raw. So far his mouth looks good (No sores) but we cant see into his throat and stomach to see if they are there but right now he doesnt seem to feel to bad. This is the "honey moon" Phase as the doctors refer to it so we know that eventually (in a few days) he will be a lot more nauseated and in more pain. The doctors have meds ready though to keep him as comfortable as they can. He started his anti-fungal med today and his cellcept yesterday. So far he's doing good. His heart rate has been a LITTLE high (not dangerously) but more than likely it is only because he is nauseated and in some pain. After they give him the ativan it usually goes down to normal. So far today he hasnt a fever which is good and both of his cultures came back negative for infections. I will update soon. Please Keep him in your prayers. I will post some picture soon! I have LOTS! He still likes to pose for the camera. TOOO Cute! I love him so!

Day -1 and the Big Day..Day 0

2010-03-11T13:03:00.000-08:00

Day -1 was kind of rough. Kyler was in some pain and had a temp of 102.5 (at the highest) and his heart rate was a little high. We gave him some meds and he slept on me the majority of the day. His ATG finished up at 8pm that night and he did great that night and by this morning (Day 0) he was doing much better. He had to have a little more pain meds but then he felt great. BMT was at 12pm. He did really well. He got sick (as expected) but after he vomitted he felt better and went to sleep. He is now laying in his bed playing with the oxygen tube (which they just put in his bed for a little extra oxygen) He doesnt have a mask or anything so hes free to play with the tube. So far his fever has stayed down and his blood pressure and heart rate are much better. I know its going to get worse before it gets better but he is such a strong little guy. I lovehim so! Please keep him in your prayers.

Day -3

2010-03-09T10:18:00.000-08:00

This day(Monday March 8th 2010) Day-3 was Ky's 1st day of ATG. He did great during the first 6 hours but during the last 2 he broke out into a rash and had a fever by 12am. Today they are giving him benadryl around the clock during his ATG treatment to help keep that from happening. Hopefully it will go better. He is losing his apetite even more now and is more nauseated. He still manages to laugh and play though. Such a strong, amazing little boy. I love him so. Everything else is doing good so far though. Just hoping it continues.Please keep him in your prayers.

Days -4 and -3

2010-03-08T12:36:00.001-08:00

So far so good. Kyler has been more nauseated thus getting sick more and eating less but he is still doing really well. His urine needs to be a little bit more diluted but nothing to worry about. We started ATG today which I was nervous about bc of the side effects it can cause during infusion but so far he is doing good with it. Other than that not much is going on. He did have ativan for the first time last night and was soo goofy! It was kind of funny, but he felt a lot better. His crawling skills are improving. He rlly want to just stand up and walk so we are getting him a table to pull up on and play on. Maybe he'll be walking soon :) just 3 more days till the big day. Please keep him in your prayers.

Day -5

2010-03-06T07:37:00.000-08:00

So, we had a "Bump in the road" today. Kylers CVL (Lumen Hickman line) "migrated" out of place and had to be replaced. I was so nervous but he did amazing! Even better than the first time. There was less bleeding this time and this doc did it w/o cutting Kylers neck. I was very happy about that. He got behind 2 treatments on busulfan but we finished up this morning and will start Cytoxin later today. His eczema is kind of bad on his legs but that has a lot to do with how dry the air is here bc of the air system that keep germs from coming in the room from other rooms. He is still nauseated every night but he is handling it so well to be so little. He plays up until he throws up and then goes back to playing. He is just so sweet and I cant believe how strong he is. I know this may sound crazy but Kyler is my little "hero". he has gone through things and handle them so well and if it was me I would be crying every time. He got and IV yest without numbing medicine and didnt even make a sound. I think he handled yesterday better than me. I wanted to cry when they told me he had to have surgery again and I guess he could tell I was getting upset bc he was sitting in his crib and I was beside him and he wrapped his sweet little arms around me and sqeezed me so tight :) After his sugery he saw me walk up and was practically jumping out of the nurses arms to get to me and his daddy. I know this is off topic but he brings out strength and love and feelings in me that I didnt even know I had. I am so blessed that God gave him to me.
Okay back on topic. Ky now has 4 teeth and working on 2 more. His smile is oh so cute! :) Medical wise, he will be coming off of dilantin 24hrs after he finishes busulfan he will start mesna with Cytoxin to bind to the Cytoxin so that it will help keep the cytoxin but cutting or tearing his bladder. He will stay on acyclovir, zofran, zantac,aquaphor for his eczema and benadryl as needed. He is still doing great with his mouth care, but the nystatin tends to make him sick. He will be able to stop it though after BMT when he starts his fluconazole. So far everything is going good. I will update soon. Please keep him in your prayers! Thank you to all of you who have been thinking about and praying for him.

Day-6

2010-03-04T10:59:00.000-08:00

So far Kyler has done really well. He started getting nauseated from the chemo night before last (tues night) and has thrown up 3 times. He seems to feel good though. He plays and laughs and has actually done a few things since we've been here that he didnt do before. He pulls up onto his knees in his bed and has almost pulled up onto his feet once. He now says "Yeah" which has become his new answer to everything instead of "No-no" like it was LOL :) He is able to play on the floor without his helmet here so his mobile skills are getting much better. They came and scored him and he scored 10 months on mobility and 12months on verbal and understanding. The nurses all love him and he does so good with things that they said most kids fight against like: Vitals,mouth care, and drinking the nystatin. He had a bad night the first night but only bc he wasnt use to having fluids flowing through his line and he didnt like the taste or feel of it. Since then he has done great with it. He sits in his bed and plays during the 2 hours of chemo and doesnt fuss. Its like he understands when I tell him he needs to sit there and play so that the monitor will pick up his heart rate and oxygen levels good. I am so proud of him. I love him so much.
Now some medical things. Tomorrow is his last day of busulfan and then we will start cytoxin then ATG. He is currently on acyclovir to help prevent viruses, dilantin for seizures, zantac for reflux, zofran for nausea and benadryl as needed for nausea. His counts are as expected. I will try to update next week or so. Please keep him in your prayers.

Day -7

2010-03-03T14:43:00.000-08:00

I typed 2 paragraphs worth of info but it deleted it. I will retype later! hes doing great so far though :)

2010-02-26T06:48:00.000-08:00

All of Kylers tests for his workup went great and everything came back good. We signed forms last week so we will be admitted monday March 1st. We found out that not only is the cord we have a perfect 6/6 match but it is also the same blood type. We were really happy that everything matched so well. Kyler is doing good. His top 2 teeth have broke through and are coming right on in. Its too cute!! He is starting to want to play on the floor more but it just makes me so nervous, even with the helmet. Once we move into the hospital, though, they said they will put a play mat in his room, so we will be able to play on the floor a lot more. :) He's getting so big. Last week he was about 22lbs and 28inches long. He's growing up so fast! I cant believe he will be a yr old in less than 2 months. He's the best baby and he is so so sweet :) I love him so!:) Please Keep him in your Prayers!

2010-02-14T17:25:00.001-08:00

Kyler had his line put in tuesday. He had to have a blood transfusion because platelets were low and his blood was "oozy." He did very well though. The doc did an incision instead of using A needle to find the vein like they usually do. He said that actually would cut down on bleeding. They gave him twice the amount of platelets they usually do and he had to have a ton of fluids so he was a very swollen little baby for the first 3 days. He was wonderful though and he did amazing. All of the nurses loved him and how cooperative he was. They said they arent use to babies not crying and Kyler didnt cry during his labs or prep etc and barely cried when he woke up from surgery. As soon as they handed him back to me he fell asleep and didnt cry again. He was amazing even when we got home. He really is a very strong little boy. He has been wonderful through all of this.I love him so much and am so blessed to have him. He did lose his appetite thursday. I couldnt get him to eat anything and could barely get him to take formula. He did eat a few popsicles though and drank some juice. Friday he woke up sneezing and by fri night he had a runny nose and congestion and a cough. Friday night was pretty rough on him because he isnt use to breathing through his mouth and he would get nervous when he couldnt breathe and get choked up and then he would throw up. I felt so sorry for my sweet baby. I sat on the couch and let him lean back against me to sleep until 3am when it finally broke loose a little (with the help of saline spray and suction) and he was able to lay in his bed with his head elevated. He slept until about 6:30am and my sweet husband got up with him and let me sleep a little. Sat he seemed to feel a LITTLE better but still wasnt himself.He couldnt nap well because he still couldnt breathe laying down. I went and bought a humidifier thinking it would help him breathe BIG MISTAKE! It made him a lot worse. I put him in bed at 8pm and turned it on and he woke up at 10 screaming and gasping bc he couldnt breathe. That was the worst he had been and it really scared him. I got him up sprayed and suctioned his nose and laid on the couch with him until 11pm.My husband and I noticed that the cooler he was the better he could breathe so we turned the heat down to about 68 degrees and he started breathing easier so I laid him in his bed around 11:30pm and he slept until 7am this morning. Today he has been doing GREAT!! He has ate a TON and can breathe better and took a 2 hour nap. He didnt cry when we flushed his lines (He's been crying when we do it because he has to lay down for it and it bothered his breathing) and he went to bed no problem tonight. The schedule RIGHT NOW is tomorrow: rest of lab work tues: Kidney tests Wed: CT scan Xrays. Next mon or tues we should be signing consent forms and IF everything goes as planned and all test results come back ok we should be admitted March 1st. We will have 8 days chemo (busulfan, cytoxan and atg) 2 days rest and then transplant on 11th day. I will keep everyone updated. Please keep our sweet baby Kyler in your prayers! Thank you for all of your prayers and thoughts! :)

2010-02-04T16:18:00.000-08:00

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.

2009-12-26T13:32:00.000-08:00

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! :-)

2009-12-11T17:55:00.000-08:00

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!!

2009-11-24T19:20:00.000-08:00

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

2009-11-13T12:59:00.000-08:00

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.

2009-10-16T15:11:00.000-07:00

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

2009-10-06T08:02:00.000-07:00

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!

Kyler's First Zoo Trip 9-27-2009

2009-09-28T07:03:00.000-07:00

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 napping..so 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!

2009-09-19T20:16:00.000-07:00

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??

2009-09-18T05:43:00.000-07:00

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 way..in 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! =)

2009-09-15T15:03:00.000-07:00

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!

2009-09-13T11:01:00.000-07:00

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!

2009-09-10T19:16:00.000-07:00

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 ...one 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!

2009-09-01T15:10:00.000-07:00

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 work..no 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 it...it 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) Okay..now 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.

2009-08-25T14:48:00.000-07:00

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!!

I forgot to mention...

2009-08-18T18:44:00.000-07:00

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!

More News....

2009-08-17T19:10:00.000-07:00

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 :)

Good News!!

2009-08-05T09:27:00.000-07:00

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.

By the way....

2009-07-24T19:28:00.001-07:00

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 :)

Our first Stem Cell Doc Appointment.

2009-07-21T05:00:00.000-07:00

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!

Our Happy Little Boy!

2009-07-18T08:48:00.000-07:00

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!! :)

2009-07-17T20:08:00.000-07:00

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

2009-07-17T19:36:00.000-07:00

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

2009-07-17T18:53:00.000-07:00

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.

Anyways..now 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!!