Saturday, December 18, 2010

Im loving our new "home"  I love looking around and seeing other cute little bald heads and seeing nurses dressed up in their chemo attire.  I never thought those things would ever give me joy, but its so much better than being in a place where its normal to have a kid in the bed next to you not make it and pretend to go about your normal business while you listen to mourning cries from the family.  Up here it feels more like a home now.  I know last time we were up here it was such a hard transition for me, but this time its different, I was so ready to be up here.  There is an actual bathroom in our room, an wait for it....a shower also!  Its so much more quiet and calm, and at night the nurses actually make it a priority to be as quiet as possible to let you sleep.
When we first got up here Skyler started crying because he wanted to go back to his old room.  This change was hard for him, he just got too used to being downstairs that this move to a different place made him scared.  It took him a little bit but eventually he started to like his new room.  Last night at about 2 in the morning he wanted to get up and sit on the side of the bed, he started talking and laughing with me like we used to.  For about twenty min. Skyler was back to his normal self.  It was amazing.  His speech was clear as day, he remembered things from a long time ago, and we talked about being in the hospital and why we are here and about Christmas and about how fun it will be when we get to go home.  We actually had a normal real conversation that I havent had with him since we got here.  I couldnt stop smiling the whole time I was talking to him so he probably thought I looked like a dork, but it was just such a little miracle.  I will always remember those twenty minutes!
Today has been a good day too.  We were able to take his NG tube out, which is a big tube that goes into his nose and down into his stomach.  It suctions out everything that goes into his tummy, but he has been doing so well that they decided to pull it today.   They also pulled an IV out that was in his hand, so he is now free from two more tubes.  He said "Ahh that feels alot better" when they took them out.  It was really cute.
He has been really talkative today and is making everybody laugh.  Most of the nurses have never heard him talk before either because he has been so sick or intubated, so it has been fun for everyone to hear his voice and see his personality.  Also, his counts were up high enough today so we were able to go out in the halls.  He loved it, he didnt want to go back into his room.  When we were out there he said "Hey this is the Children's Hostible (hospital)"  It was funny because he just realized where he was this whole time.  Last night he also asked me "So is this our new home?"  I like that he is so aware of things now.  Also when we got back to our room he said he wanted to stand up so he could look around at things.  He has never asked to stand up before because it hurts him so bad, so him asking to is a big deal for him.   I said yes, so I got him out of his chair and helped him try to stand.  Of course he couldnt bear any weight because he hasnt stood for 4 months now and has no muscle whats so ever in his little legs, and he cried in pain the whole time but the fact that he tried was incredible.  Way to go Sky! 

Here are some pictures of our adventure in the halls today....


                                     Skyler and Grandpa looking at the toys in the playroom. 


Out in the halls by our room.  Grandpa was being silly, he always knows how to make Sky laugh




Looking out at the world for the first time in a long time, he loved it!


One of the not so great things that happened today was that he threw up a TON of blood this morning.  It scared me to death!  We had the doc come in and check him and she said the most likely cause was that because he has been throwing up so much lately and because his platelets were so low, it caused a tear in his belly.  They gave him some medicine that would coat his tummy and the next time he threw up there wasnt blood in it, so it looks liked it worked.  Thank goodness.  I was thinking "Here we go again down to the PICU"  but we are still here and the rest of the day turned out great.

14 comments:

Michelle and Sean said...

I'm so happy you guys had a good day!! I hope there are many more to come. It makes me cry all the things that he is realizing that have changed and are his new normal. Its not fair for these sweet little kids to go through so much.

Continued prayers for you both!! We have a few appts next week so I'm hoping to bring Skyler the stuff we have for him then.

johnjillhuz said...

Oh Crystal, I am so happy for you and for Skyler. He has improved SO MUCH! What sweet wonderful blessings. I am so thankful that he is in ICS and not in the PICU anymore. I am thankful that he is smiling, talking, and getting a chance to stand up! What a long hard journey this has been. You are special friends and we just think about you two all the time, so I hope that you know that you are always being prayed for.

Briana said...

I LOVE reading all this happy news!! He is such a strong little fighter! It is all so amazing. I can imagine that getting to see some of the old Skyler back is heavenly! Yay, yay, yay!!! We'll keep praying for him to keep getting better and stronger.

Elena is in room 4401. It's just her and my husband, Eric there. The baby and I are home sick. :( Lame! We really want to come visit you guys, but they, at least, can't pop by yet because we think Elena has a little bug and we don't want to risk passing anything to you guys! We've all got to get better and come say hello! :)

Heather said...

This is wonderful. We're thrilled that he is doing so well! Way to go little Skyler!

Dani said...

I am so happy for both of you. What better time to be celebrating Sky and his improvements? I am so sad that i could not make it to the get together the other night. I look forward to meeting you. We will continue to keep you guys in our prayers.

Brooke said...

Yay! I have been fallowing your blog almost everyday since i found it....and was excited to see this post today! What a brave little guy and an amazing Mommy! We hope you have a very Merry Christmas...with lots more good news in the year to come!

-I have to tell you I have a 3 year old little boy and everytime I pull up the blog he will say it's "Skyler Mommy" and sits on my lap and looks at it with me!

lindsay Roscoe said...

HOORAY HOORAY HOORAY!!! I hope your family gets the merriest Christmas ever!!

lea said...

YAY! Its so nice to see glimpses of our babies when they are feeling better! Im sure those moments will get longer and longer until hes all better. How exciting! Ity brings tears of joy to my eyes! I bet youre like a sponge soaking up every moment! Enjoy it..you (and he) earned it!!!

Amy Jaten said...

Oh what JOY! Finally some sunshine. Keep talking to him about what it will feel like to get better and be home. I swear it works, I know it sounds all Oprah/The Secret/ CRAZy... but I swear it works. Have him imagine what it will be like to be healthy again and back to normal- and focus on it every day. You will attract it! (meanwhile the whole community is thinking and praying for your two as well - so all ends are covered :) )

dailydaph said...

I'm all choked up! I love happy tears. So glad sky was about to get out and about a little bit. It sure does help to break up the days in there. So glad he's moving so quickly back to his old self. Your heart is just going to burst- we can all tell and we couldn't be happier for you. What a fabulous Christmas!

Amy said...

It's so wonderful to hear him doing better...we are praying that he can continue to get better!

JACK's house said...

Yeah for happy days! He is looking and sounding awesome!

N Gines said...

Go Skyler!! I am so glad to read that you made it back upstairs. He is such a toughie and I loved that he wanted so badly to stand and look out the window although it was painful. Awww, he melts my heart.

Vampymegs said...

Tears of joy for you and your family. I hope he only continues to get better and stronger. You are an amazing woman, god bless you and yours.