Thursday, December 9, 2010

Things havent really changed these past couple of days.  We have just been hangin out and watching Sky's counts.  Skyler's platelet counts are still extremely low.  The only good that came from taking his spleen out was that it made room for his huge liver.  The reason his belly was so huge was because his huge liver and huge spleen were all squished in there and the only room for them was outward.  Now with his spleen gone, his liver has basically taken up his whole belly.  Its crazy to see because it is so prominent.  We havent  been able to figure out why his platelet count is always so low, but we have figured out why after receiving units of platelets everyday it doesnt make his numbers come up.  It turns out that his body has built up alot of antibodies to all these platelets.  Because he has received so many from so many different donors, his body is now saying those arent mine so its destroying them.  The oncologist said he has never seen a test come back that high before, meaning he has built up ALOT of antibodies.  So the plan now is, the blood bank is going to start screening his platelets (which they dont normally do) for platelets that are most like his own.   That way his body wont destroy them as fast.  Hopefully this will help his counts come up higher and stay higher for longer.  I sure hope this works.  I hate seeing a platelet count of a whoppin 3 everyday.  A normal platelet count is 150 to 400 by the way.
They also did some testing on his liver.  They think he still has fungus deep down inside of it which is making it not function right.  Its considered dysfunctional right now instead of failing.  Thank goodness, because if he was in liver failure he would not be a candidate for a liver transplant because he has cancer, and they also wouldnt let me give him part of my liver.  So lets pray hard that that doesnt happen.  That would be devastating.  The great thing about livers though is that they can regenerate themselves alot of the time, so if his body gets better then they think that his liver will too.  Yay!  Its nice to finally have a little bit of hope in that aspect.
Skyler's incision has been healing and he hasnt complained of having alot of pain there so we have been able to get him up in his wheelchair.  Its been so nice to see him out of bed again, and I bet it feel so nice to him to be able to actually sit up.  I was even able to hold him on my lap which I havent been able to do for so long.  It was wonderful!  I will never ever again take for granted the smallest thing like being able to hold my son.  Everything was right again for those 30 minutes that he was in my arms. 


 It makes me so happy to see him sit up in his wheelchair like this.  But look at those ribs!  He is just skin and bones now everywhere but his belly because he has lost basically all his muscle.

He was even able to eat a Popsicle!  You should have seen the smile I got when I gave it to him, it was awesome



This was the best thing ever.  I just love this boy to pieces!!

Thank you everyone for all your thoughts and prayers.  It means the world to me that everyone has been so thoughtful and sweet and so supportive.  I can feel the love and prayers and it has helped me tremendously, especially these past couple of weeks because they have been so rough for me.  Skyler and I are so blessed to have such great family and friends.  I also want to say thank you to everyone who has donated or looking into donating blood products.  This makes me so happy!!  Thank you!

8 comments:

lea said...

I am in tears! How exciting that you got to hold your baby!! That had to be the BEST feeling ever! Im so glad hes up and eating..even if it is a popsicle. What an amazingly resilient kid...Im so glad you can feel the prayers of those around you, because I know A LOT of people, including me, are praying for you. Hang in there!

Briana said...

That picture of you holding Skyler is a beautiful sight! I bet you were in heaven! It's a good reminder to me to treasure those little moments with my kids. You really don't know what you've got until it's gone. After Elena was diagnosed, I swore to myself that I would never take anything for granted with her - and 9 months later, I totally have. All the time. :) Thanks for the sweet reminder - and example! You guys are so wonderful!

I appreciate hearing these specific updates- it gives good, specific direction to our prayers. Hang in there!

lindsay Roscoe said...

He is one incredible kid. He amazes me. He is fighting through more then anyone can even imagine. We love him. Rosoces blood is universal does this mean the same for platlets?? He could keep donating for Skyler if they would let him?

Miss Deja said...

I do not know you are Skyler but just wanted to say Thank You for your updates and for your incredible dedication and strength through all of this. Skyler is truly an inspiration to me and a gift. I pray for him daily, and for you. May God Bless you Always!

Mi'Chelle said...

You guys are amazing. Really. Thank you for sharing your thoughts and feelings as you go through this process. It helps me to want to be a better person, and a better mom, and realize how ungrateful I can be. Bless your heart.
Thinking of you every day.
The picture of you holding Sky in your lap makes me cry. What a wonderful tender mercy.

Beth.. One Blessed Nana said...

i love the picture of you holding your sweet boy and the one of him eating a popsicle.

continuing to pray for God's mighty Hand upon little Skyler!

Cami said...

You explained things in this blog so that it is easily understood as to what is going on. I am so happy that you were able to hold your sweet Skyler in your arms. Heavenly! I love that he lit up so much when you gave him his popsicle. It is the small things that make us as moms smile and feel peace, even if it is for just 30 minutes! Keep your chin up! Still in our prayers! Go Team Skyler!!!!

Plain Jame said...

He's so sweet. It kills me to see him suffer so much - I can't even imagine what it does to you daily Crystal.

Out of curiosity, what is Skylers blood type? Is it one of the rare ones? My husband has a rare type and he donates all the time in the south valley.

We love Skyler, it's so sweet to hear my little girls pray for him.