Thursday, July 21, 2011

We will be going home tomorrow.  I cant believe how fast this round went by.  By far this round has been the easiest for Skyler (knock on wood)  Its so nice to be able to come to the hospital just for chemo instead of fevers.  Of course he is still having fevers but those arent anything new and they dont really make Sky feel too horrible.  He just gets really cold when he is about to spike.  I know it must not be too comfortable for him but he doesnt complain.  Hopefully since being on this new antifungal these fevers will resolve by Saturday or Sunday.  If not, well I dont want to go there yet because we dont have a plan yet if thats the case.  As for the sedated hearing test, that is scheduled for the 2nd of August when we come again for another round.  He is scheduled that day to be sedated for a lumbar puncture so we are just going to do them both at the same time.  I really wanted it done while he was here in the hospital just to get things rolling but I guess he cant be put under when he is on bi-carb.

Things have been going really well this stay and Im so excited to be able to bring him home off all IV meds.  It will be so weird because he has had to be hooked up everyday for almost a year now, but it will be amazing.  Its one step closer to a normalcy I have been craving and that Skyler deserves.  I am so happy for him that he wont have to carry around a pump all day.  We have also taken him off a couple oral meds as well so thats exciting too.  Even though its taken alot longer than anticipated, maintenance is getting closer and closer.  We are almost there!  Skyler keeps talking about all the things he wants to do once he finally gets to maintenance and Im so excited to be able to let him do those things.  Of course we still have to be really careful but since he isnt going to be taking heavy duty chemo that will drop his counts we can do a lot more.

Skyler's uncle Ty came up to the hospital a couple of times this week which made him so happy.  Skyler says Ty is his bestest buddy and he just lights up when he is around.  I wanted to share a couple pictures because I thought this was so sweet.  Skyler has been so excited about his dollar that he got from the tooth fairy.  He keeps thinking of all the things that he wants to buy with it, but today he had me go get it out of his bag and he gave it to Ty.  He loves Ty so much and he just wanted to make him happy so he gave him his precious dollar.  It was so cute.  You can see in this picture when he was surprising him just how happy he was to give it to him.

Its moments like these that melt my heart.  He truly loves to make people happy, and he is always thinking of things he can give away to people to make them happy (especially his uncle Ty)  I am so grateful that he takes the time to come play with Skyler and bring a smile to his face.   He is such a wonderful male figure in his life.

7 comments:

suzie said...

Oh my heavens......I didn't think I could cry so much...........ur perfect skyler is simply AMAZINGLY A-M-A-Z-I-N-G !!!!!!!!!!!! Such a precious soul with a heart of puuuuuure gold! Those pics of him excitedly hiding his $1 behind his bck, then giving it to his uncle ty...tore my heart out.......so giving and pure at heart!! He is my hero....no kidding crystal, he is! WOW!

*suzie

Jami N. said...

Of course...here I sit in the PICU tonight. Tomorrow night I will probably be on ICS and you will be home. Oh, well. Enjoy your time at home! Whatever will you do without meds to give all night long? ;-)

Susi said...

so happy things have been going well! What a sweetheart! :)

Anonymous said...

beutiful,, simply beautiful. keep staying strong sweet boy,,

zachs mom

Sonja said...

What a darling story about the dollar--he is a great, brave, sweet boy! He makes me want to be better. Have fun at home!

Anonymous said...

I am so glad things are going great this time around. What a sweet little boy. I loved the pictures you took of him giving the dollar away.

Alli said...

I have been reading for a while without commenting...but not without praying for Skyler! I have a 4 (almost 5) year old boy, so I can relate to that part of life =-) You are raising an amazing young man! Keep up the hard work and the great fight! Know that there's another mommy praying in Virginia.
Allison