Final Countdown

 I almost can't believe I am going to say this, but Alex leaves one week from today! The last few weeks have been a mad dash as we try to finalize everything we need to make this happen! Between packing, finalizing financial arrangements, chatting with his roommate and his mom (who has quickly become a friend), trying to see all of our doctors, making sure Alex is comfortable with all aspects of care and knows what to do in unusual circumstances along with our normal crazy life it has been a bit busy! We continue to be so very grateful for all of our doctors, nurses, pharmacist, and supply companies who have worked tirelessly over the past 19 years to make this day possible. God has worked so many miracles in Alex's life and I am trying to keep that at the forefront of my mind as I scramble through my days. I am so grateful and excited. I had a conversation with one of our medical team this week and we marveled at the fact that the things I am worried about are "normal" mom things and not medical in nature. I have worked very hard throughout Alex's life to be sure he understand his disease and could handle his medical care. I have absolute faith is his ability to take care of his medical needs. I am a little less confident in his ability to remember to check hi email and make sure assignments are turned in on time. But I know that he will rise to the occasion as he has shown me throughout his life his ability to handle responsibility and make good decisions.

Oh how I will miss these two!

As for Miss Maddy Moo she is preparing for her biggest horse show of the year. She works harder than anyone I know and pushes through pain and feeling bad almost every day to do what she loves and continues to exceed expectations. She also had some extra fun last week as she spent a few days at dance and art camp with Ms. Joli! Joli has an incredible ability to make her kiddos feel so very loved and special and she gives Maddy a creative outlet that is so special for her. Her time with Ms Joli is one of the few times when Maddy speaks openly and is willing to take on a leadership role as she helps some of the younger dancers. I am so grateful for Joli's loving heart and kindness to all her kiddos and families. She is truly one of God's special angels. We also had the opportunity to visit Maddy's school this week. After two years in a temporary space they are moving into a brand new (long awaited) building in a few weeks. Our beloved Mrs. Whitington gave us a tour and showed Maddy her classroom. Maddy cannot wait to be back spending time with her friends and this building will be SO much easier for her physically!

Maddy and Joli

Maddy and Mrs. Whitington

As for me, I am getting back to my old self! I have been struggling with arthritis with pretty significant pain since October. I have seen a rheumatologist on a regular basis and struggled to find a combination of meds that could control my pain and swelling without wreaking havoc on the rest of my body. After so many months and several changes we finally got insurance to approve a medication and I am virtually pain free! I am still a bit stiff in the morning, but what a huge difference in the past 6 weeks since starting my medicine! The kids have been taking turns giving me my shot (it is an injection every other week) and they think it is awesome to be able to stick me instead of the other way around! As for my surgery, I am recovering well. trying to behave and not overdue it. I am able to eat more than I have in months although I have found a few things that have been a bit harder to handle. I am so glad to be feeling better and getting back to focusing on the kids and enjoying life instead of feeling horrible. 

I ask for prayers as we go through the next week. Pray for this time of transition and that we soak up these precious moments. What a blessing as we march toward a day that never seemed possible.

Ali