Hi all! It has been quite awhile since we have updated on our COTA page. 

We would love to say thank you for all the patience and encouragement.  

It has been an exciting and busy year for Alice. 

She is about to turn 4, in July, as well as starting her last year of pre- k. 

We started off the year with her corrective hand surgery. When Alice was born, her right hand had a “Wonky thumb”. It was missing a joint and the muscle and ligaments that would have made it functional. The thumb surgery was the least of our worries, what with her Biliary Atresia diagnosis and everything that that included over her first 2 years of life. She finally got it fixed and her Doctor gave her a new thumb! She is so happy for it and will proudly wiggle it for anyone that asks. We were worried that the experience would be traumatizing for her, but, she took it all in stride. It helps that Phoenix Children’s Hospital has some amazing nurses and Childlife Specialists,  as well as caring doctors. 

Alice had her cast for about 8 weeks. During that time she caught covid, (one handed, I light add, impressive). She did have to spend a couple of days in the ICU due to her heart conditions from the previous liver failure and some anomalies she was born with. It was only a precautionary measure. She did well and recovered at home. After her cast was taken off she was blessed by another local family with a brand new gait trainer. Alice still does not walk or stand unassisted,  but it does not stop her from being adventurous and independent.  She is able to cruise along furniture and counter tops. She loves to climb. 

She started preschool in April and has blossomed so.much in the short time she was there. She is such an amazing and tenacious little girl. She would come home talking about her day with her friends and her teachers. It brought tears to this Mama’s eyes to see her out the playing and sharing so well with kids her own age. To hear her excitement every morning as she picked her outfit for school. She would squeal and giggle with delight as we pulled into the parking lot and got her into her transport chair. She sings her little songs now. And if Mom or Dad try to chime in, we get told, “No, Alice gonna sing it”. 

We have had some other big life changes as well, at home. Her older siblings  decided to fly the coop. They figured they wanted to go adult on their own and man, have they both done a great job of that. Alice has now become the star of the house. She enjoys her long chats with all 3 of her siblings. We spend our days making messes and cleaning up and repeating the process. 

Alice’s liver is doing amazing. Her medical teams, both, local and Phoenix, do a great job checking in with us and helping us out any time we have questions. Her labwork has been great. Her medications are doing their jobs. Our family is thankful for every moment we have with her, thanks to our Donor Angel. 

 

Recently, Alice got to take a family trip to Las Vegas. She got to meet an Auntie and Uncle for the first time.  As well as, meeting and playing with another Biliary Atresia/ Liver Transplant friend. We met through Phoenix Children’s Hospital.  But, the kids never got to meet or play together. All I can say it how amazing it is to have that connection. They did well. They enjoyed each other’s company. They are little so it was awesome to see it. We can’t wait to visit again. ???? 

 

Alice will be returning to school.at the end of July. Her Nana will be going back home, and we will see what this next year brings us..it’s so amazing to see the changes and the growth . It’s hard to believe that weill be turning 4 and that she will be 3 years post Transplant in September.  

Thank you to everyone. For the prayers. For the kind words. For the encouragement and celebration with us as she meets all these milestones. We appreciate all.of you.

Every year our Facebook memories pop up and remind us how far she has come. I do , as Mom, try to keep in mind all the miracles their girl has been throug, but, this is also such an emotional time. 

Thank you, never seems enough, to the family that gave us our Alice. 

Thank you, never seems enough to all of you guys that helped us get our second opinion, that got Alice her Gift of Life. 

Thank you to our nearest and dearest that held our family, and me, together with your love and support. In the days before her diagnosis. And in the days following. 

This journey has been an adventure.  I don’t know where we would be without you. We are truly blessed.

I will try to update with more and add pictures. 

Ta ta for now.