Home at last!

We finally made it home on Monday evening. We are so thankful to be back in our own house and settling into our routine. Alex and I are both exhausted. We have a month of sleep to catch up on. No matter how wonderful the nurses are, you NEVER get a full nights sleep in the hospital. Between beeping pumps, nurses coming in, techs doing vital signs and doctors it is just impossible! I always forget how quiet and dark a room can be! It really does make me appreciate the simple joys of everyday home life.
Healthwise Alex is doing well. He is back to his crazy self. He is so vibrant and full of life it puts a smile on everyone's face. I am aware every moment of how close we came to losing him a month ago and it makes me cherish the moments we share. He is so sweet and loving. This morning we were cuddling in bed and he said, "Mom tell me again why did God give me to you?" I said, "Because you are the PERFECT son for me." His quick reply..."And you are the perfect Mom for me". Those are the kinds of things he tells me every day. If anyone ever had to count how many times a day we tell each other we love each other or how many kisses we share a day, they would be in big trouble!
We have had a nice, quiet week enjoying our time with Mimi. We have been quietly hanging around the house. Mom has also helped us to finish decorating Buggy's room. As many of you know, Bug loves zebras. Mimi brought a calender of zebras for Bug. We pulled out the pictures and framed them. We also got a zebra stripe blanket and bean bag. Bruce is working on painting zebra stripes on letters to spell Buggy above his bed. Against the electric blue paint of his room, it looks awesome. We have a special surprise planned for Bug tomorrow night and then Saturday we have a cub Scout event before we have to let Mimi go back to NC. If Pop-Pop wouldn't throw a fit, we would keep Mimi here forever.
I want to thank everyone for the tremendous outpouring of love and support we have received over the last six weeks. I am completely humbled by the number of gifts and prayers we have received. We are truly blessed to be surrounded by such incredible people.
I hope to have some pictures to upload tomorrow.
Ali

Not Home Yet....

But Soon!



This is a picture of Alex on Thursday night. His eyes were red and swollen and he just didn't feel well. There was some concern at that point that he may have a virus. Lucky for us it was just a false alarm! Alex woke up yesterday feeling and looking much better. The decision was made that everyone felt better to watch Alex a few more days just to be safe. So our plan is to come home Monday or Tuesday depending on if our home health is able to get things together on Monday. We also need to coordinate with all the doctors to decide when we need to follow-up. I was able to sit with Dr. Pacheco yesterday and discuss some exciting possibilities for treatment in the future.

Other then that it was a pretty easy day. We have some of the most incredible doctors and nurses. One of Alex's favorite doctors showed up yesterday with a marshmallow blaster and a bag of marshmallows. Both she and Alex got in disguise found a screen shield and managed to ambush Alex's pediatrician and team. It made for fun and the fun continued. What an increduble team we have that recognize the need to allow Buggy to be a "normal" little boy even when we are here.


Thank you for the continued thoughts and prayers. We cannot wait to get home and back to our routine.

Ali

Home....Maybe?

Thank you for all the prayers yesterday. Buggy slept until 4:30 this morning. He laid quietly until 5, when I turned on a movie for him. The morning started out okay. I tried to work on some school, but I got scolded from Dr. Koenig, who gave him a 2 day note excusing him from school! On rounds this morning our pediatric team decided to get the ball rollling on discharge with the hopes of having us out over the weekend. Unfortunately as of now Buggy is not cooperating. While I was at the airport picking up Mimi, I got a call from the nurse letting me know that Alex was running a temp. It has stayed between 100.3 and 100.7 even with Alex lying on some ice packs. For right now we are just watching with the hope it is just from the anesthesia. He is not feeling well with a headache and feeling dizzy and really red, puffy eyes. If his temp goes over 101 we will investigate a cause otherwise we will just watch.

On the bright side we are happy to have Mimi here and we had some good laughs playing a new game called Would you rather? We hope Alex feels better tomorrow so he can enjoy his time with Mimi!

Ali