Happy Thanksgivin​g!

We are safely home and had a nice relaxed thanksgivin​g. Alex is doing well. I am adjusting to life with TPN and IV meds. And Bruce is just happy to have some company in the house.

Alex is so happy to be home and playing with his toys and sleeping in his bed. He has decided he loves Thanksgivin​g. For two days he has been telling me he can't wait because he has " a lot of smelling to do". ( For those of you that don't know, Alex smells our food when we are eating) Well I decided to make him his own plate tonight. He was so excited. He sat with us all through dinner smelling his food and deciding which thing he liked best. If only we could all be so adaptable.

T​oday on Thanksgivin​g I have so much to be thankful for...

For the sweetest boy in the whole world. Alex is such an amazing strong child. He has taught me so much about life and how to live. He has been through more in his 4 short years then most of us will ever endure and yet he is full of joy and loves life every day. I strive to have the courage and exuberance that he exudes every day.

I am thankful for my family and friends who are always there with words of encourageme​nt when we are low and smiles when times are good. For all the times they have listened to me brag and been as proud of Alex as I have been.

I am thankful to be home and surrounded by my things and aware of how blessed I am.

I am thankful for Dr. Koenig and everyone at CMHH for working so hard to make us feel "at home" when we are there, but working so hard to make sure we got home for the holidays. You guys make each hospital stay bearable for me and fun for Buggy.

Thank you to each of you for being a part of my life.

Ali

As far as I can tell, we will not transfuse tomorrow. Hopefully, we can get on the road before the holiday rush. Everything looks good except Alex's pancreas numbers. They are the highest they have been since they started trending down a week and a half ago. We are not sure why they are climbing again. We hope they don't continue this way.

I forgot to tell a funny story before... They sent someone up from pulmonology to make sure he could follow directions. When the man walked in he asked if there was an Alex Beckwith here. Alex answered, "Not me". The man asked who he was. Alex answered, "Landon". Then Alex proceeded to tell him he needed to head over to Green Leaf (the section of the floor where Landon's room is)!! He had us all hysterical. He is too much.

Please pray for safe (and quick) travels tomorrow!

Al​i

We're heading home tommorrow!!!!!​
We don't know what time. We may need a blood transfusion before we leave.

Today was a hard day. We didn't get the pulmonary function test done. Alex was petrified of putting the tube in his mouth and cried for about 3 hours. I am not sure when we are going to attempt those.

I will update tonight and let you know final plans.

Ali