Home for Easter

What a blessing this has been.  Needless to say, Lou and I (and Ty) are absolutely thrilled to be out of the hospital in time for the holiday and able to celebrate with Gavin and Ty in our own home.  It feels so good to be back despite knowing that our time here is limited.

However, we are also utterly exhausted.  We arrived home late on Thursday night, only to hit the road and head back to the hospital first thing in the morning for Ty's Avastin infusion.  The drug company doesn't allow for that medication to be administered while a person is inpatient and Ty was overdue for this life-saving medication due to his extended stay at the hospital.  We were there all...day...long yesterday.  Didn't get home until after dark.  On top of how tired we were from all of the traveling and the simple exhaustion from carrying Ty around differently given his new handicaps, we also have to be up to administer pain medication every four hours which means a very broken night's sleep.

Ty definitely has his fair share of ups and downs, but is doing so much better at home overall.  On the down side, his steroids are making him extremely emotional, and sometimes his head pain gets so bad that he tells me we need to "go back to hopwiddle bee-tuz it hurts too much to be home."  That just breaks my heart.  Luckily those moments are few and far between, and he is otherwise truly happy during the day.  On the plus side, he is regaining his appetite and he is showing so much adorable motivation to try to move his arms and legs.  So much more than when he is stuck in a hospital bed.  It made me a little sad when he told us excitedly that he wanted to play on the floor because sometimes I don't think he realizes the extent of his limitations, but Lou came up with a great idea to prop him up in his tiny recliner with all sorts of support so he can feel closer to the floor - more like he could play with his toys.  He asked for a puzzle and he was telling me where the pieces went by dictating "top right, bottom left," and so on.  What a little smarty-pants he is.  I love how he accommodates to whatever is thrown at him.  You should see how willing he is to put on the neck brace he needs to wear in the car seat.  Not a single complaint, he's such a champ!

I am posting a couple of pictures from previous Easters and I can't wait to share some of Ty and Gavin tomorrow night.  Well, probably Monday knowing that I will be indulging heavily in the wine and/or champagne that I gave up for Lent - not to mention the likely food coma that will have me in bed earlier than usual. 

Easter 2010

Easter 2011 - chubby from steroids

In the meantime, I have my own ups and downs.  I don't know if I'm happy or sad from one minute to the next, and I feel like there isn't enough coffee in the world to give me the energy I need to keep up.  On the other hand, I was running around like crazy today trying to clean the house, get organized and buy some last minute Easter surprises from the Easter bunny since I didn't expect to be home before.  I was steaming carrots, sweet potatoes and chicken to make some all natural blended shakes for Ty's G-tube. I was preparing his medicine for days in advance. I was pulling together their outfits for church.  I was hard boiling then coloring eggs with the boys, then decorating Easter cookies to leave out for the Easter bunny. I just finished hiding eggs and pulling together their baskets and I realize how much I need to just chill out!  It's midnight so I'm debating a glass of wine ;) but I think I'll just go upstairs, snuggle next to Ty and try to catch up on some sleep and regain a little sanity! 

I may be broken, but I like to think I'm still a good egg.