Friday, March 30, 2012

The Candy House

Passing time at the hospital has been brutal.  It's so hard to find things to do that Ty can still enjoy.  His old stand-bys like arts and crafts, legos, play-doh and building blocks, don't bring him joy anymore because he can only watch while I play in front of him.  Last week he started asking to build a gingerbread house.  Of course, this is not something that's easy to come by during Easter, but I saw a lot of potential in this idea.  I asked Child Life to get me a ton of tongue depressors and some cardboard and I went to work.

Thursday evening I glued the sticks together to make the walls and let them dry overnight.  Ty was excited.  Friday night is "candy cart night" so we spent the whole next day imagining all of the different types of candy we could get to decorate our house with while I used medical tape to pull it all together. 

Ty became so excited about it, he had me repeating all of the types of candy he wanted, which included some that we knew wouldn't be easy to find.  Candy corn, candy canes, candy dots (the kind that come on a roll of paper), razzles, bottle caps, rainbow sprinkles and so much more... this kid knows his candy.  Most importantly, blue gummies - and any kind of blue candy whatsoever.  One of our favorite nurses, Sue, heard what we were doing and went to Dylan's candy store that night to pick-up all of the rare finds and she came back the next day with so many amazing things.  We went to work with a jar full of frosting and a shopping bag filled to the brim with all types of candy imaginable. 

I wish I took pictures every step of the way, because this has really been an amazing work in progress.  We work on it a little bit at a time, and it has lightened Ty's mood tremendously.  He has me lay out all of the candy options on his bed.  We talk about what we are going to work on (the roof, the windows, the door, the landscaping...) we decide on what we want to use, and then I get to work trying to recreate what we discussed.  Lou added some very nice touches, too (note the front door and the stained glass made of jelly beans above it), and thanks to Meghan we added a stream with swedish fish in the yard.  This picture was taken yesterday.  We have since added lawn and some additional siding on the house.  Ty and I discussed what we should do when this is finished and Ty liked it when I suggested we make this a guest house and move onto building a castle next :)  Luckily there are a lot of finishing touches in order so we can keep this going for a couple more days.


I was planning on going to bed earlier tonight, but now I think I'll have to unwind a bit more after the night we had. 

Ty was actually tired and ready for bed at 8PM.  Lou was on his way with our favorite sushi so I convinced Ty to snuggle up with a new stuffed animal and he fell asleep peacefully, nice and early.  I could not wait to eat a delicious meal and talk with Lou in peace, it's been so long since we had an uninterrupted dinner together.  What a nice idea, I was beyond excited about how everything seemed to work out.  Then, Ty woke up with a bit of a tummy ache.  By the time Lou arrived, I had already had to change his PJs and the sheets because of the mess he made in his pants, poor baby.  I asked the nurse to order a stool culture because I'm afraid he might have C-difficile after the antibiotics he finished last week.  Then, we sat down to eat and it happened again, right in the middle of our appetizers.  A meal interrupted by the most disgusting poo you can imagine.  It was a river and it was even on the floor!  We worked as a team, we cleaned him all up, we sat down to try dinner one more time and of course, it just wasn't meant to be.  One more change of PJ's.  Another set of sheets.  A very upset little boy.

Ty ended up being wide awake and ready to party all night.  We couldn't convince him to go back to sleep until just before midnight.  Poor Lou was so tired, he was ready for bed a couple of hours ago!  This is just par for the course, I guess.  On the plus side to all of this, Ty was such an adorable sport through everything and he actually showed some promising signs of physical strength while we were moving him around to get him clean.  We could feel him pull back on his legs a bit.  Lift his arms a bit.  Roll his head to one side.  All of this shows so much potential.  And, he got his voice back.  It comes and goes in and out of a whisper, but when he wants to be heard he can speak loud and clear.  And what a beautiful sound it is.  Even when he says "mama...mama...mama...mama...mama..." one hundred times in a row, I am grateful for the sound of his adorable little voice :)

Goodnight everyone.  Thank you for your love and support. 



7 comments:

  1. The house is beautiful, just like your amazing, strong boy.

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  2. Love and prayers for Ty and his amazing family!

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  3. picturing the poo and the sushi and the candy house,,,,a mom's work is never done! God bless you

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  4. Hello Super Ty and family -- I feel like I know you all so well, but we have never met. My son and I pray for Ty every night. We have rejoiced and grieved along with you. I found Ty's story shortly after my father died of brain cancer. And since then my brother has also been diagnosed. Ty and Josh are fighters and God's work through them is NOT done! Keep fighting Super Ty and know you have legions of people praying for you every day :-) - Rebekah

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  5. Ty! Great work on the candy house! I agree that it should only be the guest house :) Ty, you should add a swingset with a tree house if mom says yes. I am so glad to hear that you are moving more and getting more energy. Keep up the hard work SuperTy!

    You are loved across the globe big guy!

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  6. You are an amazing MOTHER.... TY must LOVE THE GINGERBREAD House.. Cindy I Love You All So Much!!! Praying Always... xoxoxoxx

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  7. Cindy & Lou,

    I love the Gingerbread house! Christmas is my favorite time of year, I still at times, still listen to Christmas music :) I love making Gingerbread houses! Alex and I have so much fun! You really did do an incredible job! You are simply amazing! Ty is getting stronger, I love it! He is a fighter and he will continue fighting!

    Hugs and Love

    Joy Marielle
    Baltimore, MD

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