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

An update on my recovery

 Thank you for everyone who has thought of me, prayed for me, reached out, helped with Maddy and provided meals. I am so grateful for my incredible community and the village who supports us through the many challenges of life. 

My surgery was on Wednesday. Overall, I am doing really well. The surgeon said my gallbladder was VERY inflamed and its a good thing we got it out when we did. As soon as I woke up I could tell the nausea that was a constant for the past 4 months was improved. As anyone who has had abdominal surgery can attest, it is not super comfortable after. For the most part my pain is very well controlled if I am laying, sitting or standing, but moving from one position to another is still a little rough. But considering I am only a few days out, I am pleasantly surprised by how well I am doing. 

Alex and Maddy have been very sweet and helpful. They are so glad I am feeling better and have been able to eat a little bit each day. I am so ready to put this behind me and get back to living with joy. On another note, the new medication for my arthritis is a shot every other week. i have now had two doses and have noticed a huge improvement already. So in a few weeks I should be good as new!

I wanted to share a quick video of my Maddy Moo in case you aren't on Facebook. Maddy has set some lofty goals for herself in riding and she is always working to achieve those goals. One of those goals was to lope her horse. Our goals have mostly been on the back burner for the past couple months because adjusting to a new barn and horse took a little time. But we have seen her improve in HUGE ways over the past few months. On Tuesday, Tammi unexpectedly asked Maddy to lope PD. This video captures the joy and emotions for both of them when she was successful! I love to watch Maddy achieving her dreams and to see the magical relationship between these two. There is so much love and trust. It is exactly what every coach athlete relationship should look like. 

Thank you for loving our family and continuing to walk this journey with us!

Ali

Prayer request for me

 Needed to get out a quick update and prayer request...

The last two weeks have been a bit rough. Things have been good with the kids. Alex is starting to go through his things and pack what he is going to take with him to school as we have less than a week till he moves in. He was also admitted into the Honors program which he is SO excited about. Things continue to fall perfectly in place for him at DBU. We are also getting a bunch of doctor appointments done while he is still home.

Maddy is improving daily at the barn. It has been so fun to watch her build on her new found confidence which is leading to increased skill every lesson. The heat has been rough so we are having to shorten lessons, but she is doing amazing in the time she is riding. She has also been doing some auditory therapy to try and help her brain improve its processing in timing and pitch. She has been working hard. 

Now on to me...as most of you know I have been struggling with my health for the past six months. I am dealing with a new autoimmune disease since October. Starting in March I started having pretty significant GI issues which at first we attributed to side effects from the medication. But after a few medication changes and stopping all potential causes, my GI issues worsened instead of improving. I have been through many tests as the doctors have been concerned as I have lost 22 pounds over this time period. We discovered that my gallbladder is not functioning. I am having surgery on Wednesday to have my gallbladder removed. The surgeon is not convinced this is the total cause of my issues, but regardless it needs to be removed. I have been trying to get in with GI and have been referred to three different practices none of who can get me in before the end of August! The surgeon told me I have to keep that appointment to be sure that we can address any other issues. I ask for prayers for safety during surgery and a quick, easy recovery. I am not the best patient as I am not good at taking it easy which my friends and family can attest to. i will try and update quickly Wednesday night to let everyone know surgery went well.

Thank you for your prayers.

Ali