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!
Saturday, January 1, 2011
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
Wednesday, October 13, 2010
Friday, October 8, 2010
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
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.