Friday, December 17, 2010

We just got our transfer orders, we are moving back upstairs!!  Im so glad we get to spend Christmas up in ICS rather than down in the PICU.  Skyler has been doing really good these last three days.  This is his third day off of dialysis.  At first they were just going to do a trial run off and see how he did, and his labs looked great so they kept him off another day.  Today they also looked good, so here we are, free from that blood sucking machine.  He is also just on a nasal cannula instead of the bi-pap or high flow.  So since he is just on a nasal cannula and not on continuous dialysis, we meet the criteria to go upstairs.  Hooray!  This is the best Christmas present ever.
Overall Sky is just looking better.  His bili is going down so he isnt as yellow, his eyes dont look all sunken and hollow like they were and he just doesnt look as deathly sick as he was.  He was even up in his wheelchair for two and a half hours today playing and interacting with the nurse and speech therapist.  It was such a happy moment for me to watch that and listen to him talk and laugh, and to hear him do his abc's and count.  He even played bingo, it just so nice to see that instead of watching him lay in bed day after day just staring off into space and not responding to anyone or anything. At one point he didnt even cry when something hurt or when they were going to do something that he didnt like, he just learned that crying isnt going to stop anything.  Thats so sad that he had to learn that.  Now he is aware and asking the nurses what they are doing and why they are doing it, and if he doesnt like it he will tell them. He even says please and thank you again, he was always so polite.  I love seeing his little personality come back.  Hopefully up on the floor it will come back even more.  I just want him to be happy again.  I want him to be able to stand and walk and play, maybe even go get some sunshine outside or get a breath of fresh air.  Its just been too long since he has done any of that.  Im hopeful that things will start improving so he can get to that point and be a "normal" cancer kid and do his chemo stuff from home.  I mean what cancer kids have to go through is NEVER normal, but I would sure like to be able to do it from home.  Never in my life would I have ever thought that coming in once a week for chemo would sound "nice"  Its just so crazy the way our life has changed so much.  Everyday that Sky is here is just a blessing, Im so grateful for his sweet little spirit.  I cant wait for the day when he is happy and healthy again and he can look back at this and say "I did it, I beat the odds and made it!"  For now, up to the fourth floor we go and I couldnt be happier.

                         Skyler playing bingo with one of our favorite nurses, Crystal.  Love her!


I love this cute little smile




Our now lonely dialysis machine decorated cute with Charlie Brown and his Christmas tree


Skyler finally told me what he wanted to ask Santa Claus for for Christmas.  It was four in the morning, but we still wrote a letter anyway!

9 comments:

Jen Beckstrand said...

This just made my day! Glad I got to see you two this week and I'm excited that next time it will be on the fourth floor! Tell Sky that Jason and I really want to come and play with him! :)

Anonymous said...

Such happy news!! Thank you again for taking time to post updates. You and Skyler are always in our thoughts and prayers.

nsudburyfam said...

I am so happy right now - I can't stop smiling! I know that finishing the cancer treatment will still have it's ups and downs, but I'm so excited for you guys that things are getting better right now! Congratulations and Merry Christmas!!

Jodie said...

Such great news! I am so excited for you! He looks great! I just recently was in the hospital with my little guy and I thought about you! I honestly don't know how you do it day after day! You are an amazing mother! I am so excited things are going well! What a great Christmas present! I hope you two have a Merry Christmas! And I hope Santa brings Skyler what he asked for! The letter is so sweet!

Kristin said...

HOORAY! HOORAY! HOORAY!!! I couldn't be happier for you and Skyler. That's the right direction Skyler buddy, keep going that way and you will be a "normal cancer kid" in no time!!

Amy said...

It is so wonderful to hear that he is improving!:) May he continue to heal and get stronger every day:):)

dailydaph said...

Hooray! So glad you get to see his Skyler-ness. Hope you two have a Merry Christmas together! What a strong family and a strong, sweet boy.

Briana said...

What a miracle!! I'm SO happy to hear this news! Go Skyler!! What a wonderful thing to happen just in time for Christmas (well, I mean compared to how it's been ;)). Glad you are getting some of the old Skyler back - may it continue to get better and better from here.

cjmom said...

Merry Christmas Crystal and Skyler - you sure made mine merry. Prayers will continue until you, Crystal, get your Christmas wish.