Time has really escaped me! Where has two and a half weeks gone! I apologize it has taken me so long to update. The second weekend of November we spent a night camping with Cub Scouts. We had so much fun. I continue to be thankful for the incredible group of people boys and parents who surround Alex with love and compassion. I often find myself with tears in my eyes as I watch Buggy partake in the normal activities of childhood that most parents take for granted. Other then camping, we have spent a lot of time in therapy and school.
Medically, Alex is doing pretty well. We have some nagging issues that we haven't quite gotten under control. He is still having seizures, he is having some neuropathy in his hands and feet, and most concerning, we cannot get his feeds back to his baseline rate since his illness in September. On a positive note, his labs look good and he has gained weight since starting TPN (IV nutrition at night) after 2 years of no net weight gain.
Yesterday, was one of my favorite Thanksgivings in a long time! We had the honor of hosting Missy, Ben and Lauren. After the loss of Samuel in September, Missy and I talked about how hard the holidays would be this year. They knew that their "normal" traditions would bring pain. I knew Bruce, Alex and I were going to be alone this holiday and immediately invited them to be with us as I am always sad when I am not with family on the holidays. And truth be told, the Knights and the Beckwiths are way more family then friends at this point. So Wednesday night they arrived and we fell into our comfortable routine. Alex and Lauren hit the playroom at full force and Missy and I hit the couches with the same enthusiasm. Ben and Bruce were just happy to be able to go to bed early! Missy and I chatted the night away and the kids finally crashed together in Alex's bed. Yesterday was just SO relaxing. There is a comfort and a familiarity from having spent months and months of living together over the past few years. It was easy and enjoyable. We were so sad to see them hit the road last night. I feel so lucky that of all the choices they could have made, they decided to spend their first big holiday without Samuel with us. My greatest hope is that we helped them create positive, happy new memories and a small measure of joy.
I will be the first to say that our life has not been the easiest of paths. I am grateful everyday for the blessings that surround me. For our incredible family and friends who have sustained us emotionally, financially, and spiritually over the last year. But mostly I am thankful that God chose me to be the mother of the most incredible little boy!