Same old, Same old

 I have updated because there really isn't much to say....

Alex is completely thriving at Dallas Baptist University. It brings me so much joy to see him really enjoying this stage of life! He has made such great friends, has connected with many of his professors and continues to enjoy student life. He is attending activities and making strong friendships, while also truly soaking in the experience of learning. I always knew he loved to learn and really dive into things, but this semester it is so apparent. He wants to ask hard questions, discuss philosophy and theology and really understand the work he is presented. He has found his footing and he is no longer calling to run things by me or asking me to help him with how to tackle assignments. When I talk to him now it is for him to tell me what he has learned or done with his friends. Every moment of this is such an unexpected gift. For so many years we lived hospital admission to admission always waiting for the next crisis, for people who haven't lived this complex life-threatening medical life I can't explain the stress and fear that underlies every moment, every activity and every decision. To see him excelling and having a "normal" life is so much more than I ever hoped or dreamed was possible. In true Alex style, he once again decided to apply for a living learning community for his housing next year. Following his application and interview he was once again accepted. So he will stay in the same area next year. 

Maddy Moo is also doing pretty well. This past few months we have seen a growth and maturity in her that is new. She is becoming more and more independent and really doing well in school, her therapies and of course her dancing and riding. Because of her disabilities school doesn't come super easy for her, but she is so determined and such a hard work that she overcomes so much. Her schedule keeps me hopping she has tutoring twice a week, auditory rehab weekly, ballet, tap and art along with riding three days a week and school and doctors appointments. We spend a lot of time on the road and it is fun for us to listen to music together or have conversations during this one on one time. We are gearing up for another horse show next week. Her and PD have such a special bond and I have loved to watch her find some assertiveness to really take charge. She continues to work on finding her voice and letting us know when something is bothering her physically or emotionally, but several times lately she has done just that. I love to see her personality come through at the barn and at dance as she feels so comfortable with the coaches, teachers, friends and volunteers who love her dearly and she trusts. She will never be as chatty and outgoing as Alex and I, but I love to see her engage and chat with the people she loves and trusts. 

The kids and I had to make a trip to Houston over Spring Break. Maddy is still having some health issues that we are trying to sort out and Alex needed to see the team that controls his research medication. Unfortunately, one of Maddy's appointments was not scheduled correctly and a few more doctors need to see the kids so we will head back over the summer for several more appointments and tests. We did complete a sleep study with Maddy, but I do not have results yet. She was a rockstar and did a great job keeping her anxiety in check while getting everything hooked up!

Thank you to everyone who has reached out to check on me or let me know they are thinking of me. I have had quite a few more appointments and more testing and we are working on coming up with answers and a treatment plan, but unfortunately it is not fast moving in the adult medical world. I will see my PCP and the ENT this week to determine if we will move forward with surgery to remove one half of my thyroid and I have some more testing scheduled as well. Thank you for continuing to pray for me as I am continuing to lose weight and struggle with nausea and pain.

Mimi is flying in this week to visit Alex, watch Maddy's horse show and spend Easter with us. We are excited to see her and can't wait to give her big hugs!

Thank you to everyone who continues to walk this journey with us. We are so grateful for friends and family who walk beside us through both joyful days and days that are a bit more of a struggle. I cannot imagine this life without so many who have blessed us with their love over the years. What an amazing gift!

Ali

A hard few weeks

 For much of the past 16 years I have openly and honestly shared the highs and lows of this amazing and often unchartered path that the Lord has set before us to walk. I have chosen to share both the fears and the blessings that have come as I navigate raising two medically fragile children. I have been candid as we walked through Bruce's colon cancer and when we have struggled through unemployment. But this last season has been a bit harder for me to share...Those who know me know I don't like to complain, I like to care for and love those around me and struggle to ask for help. But a dear friend told me many years ago that God places people in our lives to walk along with us and when we don't allow them to help us, we are robbing them of the joy and the call of helping that God has placed on their hearts.

So, all of that to say that I need to share a bit about the past few weeks. As most of you know, I have had some health challenges of my own over the past 18 months. What started as inflammatory arthritis (which was diagnosed as Rheumatoid Arthritis) led into the start of GI issues which initially we thought were medication related. As the nausea, loss of appetite and weight loss continued after making multiple medication changes, we began to do more testing which led to having my gallbladder removed in July. However, although the nausea subsided, I continued to have no appetite, lose weight and started to struggle with difficulties swallowing and feeling like food was getting stuck along with pretty significant pain after eating and drinking. For most of the last six months I have lived on soup and protein shakes and continued to try and find answers. As I continued to deteriorate, I sought out new doctors. In January I started with a new PCP and GI. My closest friends and family have been increasingly concerned and at times pushed me to seek further help when I wanted to just climb in the bed. My new PCP and his PA have been phenomenal have vowed to help me find answers and get back to living a life full of joy. Two weeks ago, my PA asked why no one had looked at my neck and throat area in all this time. And so, she sent me for an ultrasound of my Thyroid the following day. I was shocked when she called to let me know that they found a "highly suspicious" nodule on my thyroid that needed to be biopsied ASAP. I had that biopsy on February 23rd. It was a long hard week waiting on results, but I am so incredibly grateful that we got the news Friday that the nodule is benign. I have a few more tests to go through and then will likely have surgery to remove half of my thyroid in hopes that my swallowing will improve. My PA and GI also have some thoughts on the pain, and I am going through testing to try and get answers/relief. I have lost 41 pounds since all of this started and weigh less now than I did when I graduated college. It has been very hard for my family and closest friends to watch me struggle and walk through this. None more so than Maddy. For my husband and kids, I have always been their rock and the one who handles all the stress of life and helps them to remember to find the blessings and joy in our life. With me on the sideline's life has been a little shaky in their world. But as always, I can look at this period and find the good. I have seen my son mature and grow and reverse rolls with me these last few weeks. I will always treasure the messages he sent reminding me to lean on my faith and talk to him and not carry the weight alone. My closest friend has allowed me to be open and honest and cry when I needed to and push for answers when I wanted to give up. To have a friend you can be 100% authentic with is priceless. I have had friends who have walked this medical journey with me for years help me brainstorm and research and try and figure out where else to turn. And through it all I have leaned into my faith trusting that I will find answers and healing in God's time. 

Enough about me...

Alex continues to thrive at school and is really loving this time in his life. It has brought me so much joy to watch him finding good friends, enjoying his classes and plugging in in all different areas of school. As has always been his way he is not afraid to be himself and do what makes him happy even if his friends don't want to. When God created Alex, he made him to not care what others think and to march to his own beat fully confident in who he is. He has been this way since a very young age, and it is amazing to see. I marvel at his self-confidence and ability to choose his path without regard for what others think. We could all learn from him!

As I mentioned, Maddy has struggled the most with my health issues, but I am so grateful she has adults she can trust and be honest with. She has turned to her most trusted people and shared her fears. We have seen her grow and mature over this time. She is no longer my baby, and I am enjoying watching her take on more responsibility and independence. Maddy had a horse show last weekend. Leading up to it we weren't sure if she was going to compete or choose to sit this one out as she was having a hard time emotionally and we were seeing the fallout of that at the barn. Ultimately, she made the choice to focus on her relationship with her horse and becoming a better rider and make PD a better horse and not worry about placings or the "show". She did an incredible job as we watched PD try and do what she wanted and time after time Maddy showed her who was boss and PD started to respect her as the leader in their partnership. The success of that show led to two amazing rides Monday and Tuesday! On Thursday Maddy underwent some oral surgery as she had some baby teeth that did not want to budge! She had 7 teeth pulled and was a rock star! We still went to the barn on Friday, but she did not ride as she was still not 100% after anesthesia. I was extremely proud of her for making a mature decision and asking Tammi if they could just do groundwork since she wasn't feeling great and she didn't want to take steps backwards with PD. As I said my sassy little firecracker is growing up!

Please continue for answers and healing for me and for the kids during the times. There are not enough words to thank my family and friends who have been there day in and day out through this rough time and to those of you who have checked in and encouraged us during this time. I am blessed that God has filled my life with amazing people who have chosen to be a part of our journey. My life is better because of the people who walk alongside me.

Ali