Friday, October 8, 2010

So far so Good! :)

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 :) )

Tuesday, July 27, 2010

Back home..

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.

Tuesday, July 13, 2010

Back at Childrens

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.

Monday, June 21, 2010


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.

Wednesday, June 9, 2010

Day +89

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.

Saturday, May 22, 2010

Day +73 Still home:)

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 :)

Saturday, May 15, 2010

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

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. :)

Wednesday, May 12, 2010

Day +63 Things are looking GREAT!!

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!

Saturday, May 1, 2010

Day +52 Still at Childrens

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! :)

Thursday, April 22, 2010

Day +42

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!

Saturday, April 17, 2010

Day +37

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! :)

Thursday, April 15, 2010

Birthday Wishes!

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 :)

Sunday, April 11, 2010

Day + 31 and Day +32

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 :)

Monday, April 5, 2010

Day +25

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.

Saturday, April 3, 2010

Day +23

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! :)

Thursday, April 1, 2010

Day +21 We have Neutrophil Engraftment YAY! :)

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:)

Tuesday, March 30, 2010

Day +19 Another High ANC

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!!

Monday, March 29, 2010

Day +18 GREAT day!

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! :)

Wednesday, March 24, 2010

Day+13 Another Great Day!

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!

Tuesday, March 23, 2010

Day +12 Finally good News ! :)

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 :)

Monday, March 22, 2010

Day +11

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! :)

Saturday, March 20, 2010

Day +9

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!

Thursday, March 18, 2010

Update on Line Replacement

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

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)

Tuesday, March 16, 2010

Day +5

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.

Sunday, March 14, 2010

Day +3

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.

Friday, March 12, 2010

Day +1

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!

Thursday, March 11, 2010

Day -1 and the Big Day..Day 0

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.

Tuesday, March 9, 2010

Day -3

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.

Monday, March 8, 2010

Days -4 and -3

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.

Saturday, March 6, 2010

Day -5

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.

Thursday, March 4, 2010


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.

Wednesday, March 3, 2010

Day -7

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

Friday, February 26, 2010

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!

Sunday, February 14, 2010

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! :)

Thursday, February 4, 2010

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.