God Can Move Mountains

 I have had a crazy few weeks so I am overdue on an update! 

Let me start with my boy...He had an amazing last few days of his trip. He loved the trip and came away with a shift in his viewpoint on many things related to the civil rights movement and racism. He has  a greater understanding of how our history had led to systemic issues and can see connections now that he may not have made before. I can't remember if I had mentioned this before, but this trip is geared towards graduate students. He was by far the youngest and he was so grateful for the opportunity to attend. The "class" associated with the trip was American Christianity and the Civil Rights Movement. The class entailed attending the trip, writing a 12-15 page reflection paper, reading a biography on John Lewis and a 5 page report on it, and watching a documentary with a 4 page reflection and analysis. He received 100's on each of the papers and I couldn't be more proud of him. He is back in the swing of his regular classes and continues to work hard. When Alex and I first toured Dallas Baptist University we both fell in love. However, I knew financially there was no way we could afford the tuition. For months I prayed that if this was where Alex was meant to go that God would make it abundantly clear and open the doors to make it possible. We have seen that prayer answered so clearly. Since the beginning, Alex has had more than 80% of his expenses (tuition and room and board) covered by scholarships. This week once again we were reminded of God's faithfulness as Alex was contacted and asked to go to the Chancellor's office. He was awarded yet another scholarship in what could only be through the hand of God. A mother of a son who had passed away saw a video of Alex that we had created with Cook Children's and also saw Alex on DBU's social media and reached out to start a scholarship. Alex will be the first recipient and will receive this scholarship for the rest of his time at DBU. What an amazing blessing and a testament to the power of prayer.

Alex and Bruce watching DBU play in the playoffs

My sweet Maddy Moo... I am loving this time with her. We are trucking away with our school work and she has been extremely cooperative. She is thriving in both dance and riding and just loving life right now. When we made the decision to homeschool in February we decided to add a second day of dance and so she has a private ballet lesson each week. She is so happy to have some one on one time with Ms. Joli and can't wait to have a ballet solo in this Spring's recital. The recital will be based on Alice in Wonderland and Maddy is Alice. I love to think back on how far she has come under Joli from her first recital in December 2020 when she danced with tears rolling down her face because she was so scared! At the barn Maddy and Quigley continue to grow in their partnership and skills. It is so fun to watch them as they take on new challenges and she works with Mandy to "train" Quigley in all the areas he has never done. They have been a team for 4 months and have grown so much in that time. Quigley is picking up Showmanship incredibly quickly and shocking us all with how smart he is. She is so patient with him as he learns something so different. They have also made huge strides in Western and she can now ride him one handed as Western is intended. They even did a trail course one handed yesterday for the first time! It is amazing to watch how gentle and careful this huge beast is with his little girl. Our skittle loving dinosaur is the true definition of a gentle giant and he keeps us laughing with his sweet, goofy personality. Maddy was worried about making friends after leaving school, so this week we also met up with a mom and 2 daughters that we knew back in our MOMS club days. Tina has also been our photographer for many years. Her girls are almost the same age as Maddy, they homeschool and have horses so it seemed like a perfect match! After the first few minutes of shyness, Maddy and Emily hit it off and had a blast. They have already called each other, played games online and we have another playdate scheduled! 

Maddy and Emily

After a year and a half we finally have some answers for me!!! In short your GI system is meant to move one direction...down. Following the last testing we learned that since my gallbladder was removed the bile is backing up from my small intestine into my stomach and likely my esophagus. This bile reflux is not the same as "regular" reflux because bile is extremely damaging. This not only explains the significant pain I have had but also a bunch of imaging results that no one could make sense of. I am still waiting on the treatment plan. There is one medication I have not tried, but often in the case of bile reflux, surgery is needed to divert the bile further down the GI tract to alleviate the pain, but more importantly to stop damage from occurring which can have awful long term effects and outcomes. I am so grateful to finally feel like we have answers and to all of you who have prayed for me during this long journey.

I am trying to soak in these days as I watch my children thrive and enjoy living life to the fullest. I am blessed that so many of you have loved us and walked through this journey with us!

Ali

Joyful Living

 For years, I have vowed to let my kids LIVE! Many of you have heard me say that there is no point in fighting so hard to keep my kids alive if I don't let them live! But boy have they tested me this week! It is times like this that I remind myself that ultimately these kids aren't mine. They are God's and while he blessed me with being their earthly mother, they are his. I always strive to be the best mother I can and to teach them to be kind, faithful and loving and to always lean on God when life gets hard. Somedays I have to remind myself of the same.

I will start with my best boy, Alex! Oh what a joy it is to watch this stage of his life. I would imagine it is special for every parent to watch this stage of life for their kids, but when you never thought college and independent living was possible it takes on a different meaning. This week is Spring break and Alex is off traveling again. He is on a Civil Rights trip studying Civil Rights and Christianity. He has already been to Little Rock, Arkansas, Memphis Tennessee, and Birmingham, Alabama. Today and tomorrow they will be in Montgomery, Alabama and they will finish up in Jackson, Mississippi. These trips are the culmination of years of me preparing Alex to take care of himself and while it is stressful for me, it is also exactly what I hoped and prayed for. Don't ask me how many times I went through the list of supplies with him to make sure he had everything medically he would need, but he did! And I am once again grateful to DBU for working with us to allow Alex to participate when it would be easier to not take on the responsibility of a medically fragile student. The Global Studies Department has been incredible to work with and have been instrumental in me feeling comfortable to take this step. 

Letting me know he made it to the bus at 5:30 AM on Friday!

Central High School Little Rock

Beale Street, Memphis

National Civil Rights Museum, Memphis

I love to see this BIG Smile and him looking good!

He is the youngest on this trip. It is mostly Grad students and 4 working on their PhD's.

Worship this morning

Alex's text following church!
I love to see God working in and through him.

While Alex is living his best life, Maddy and I are doing the same. We are loving homeschooling and I feel certain that we made the right decision. I feel like we are both more relaxed and breathing a little easier. She has been extremely cooperative and we are figuring out what works and what doesn't work. We are loving the flexibility both in curriculum and schedule. This girl keeps me on my toes and running. She is dancing two days a week, doing church choir and three days at the barn along with all of our school and doctors appointments. I am exhausted, but in a good way. Maddy and I are loving our time together right now. We continue to be so happy at our "new" barn. We have made so many friends and we love all the laughter and camaraderie that entails. We truly feel like we have found our place and our people. What a blessing! Maddy did take her turn worrying her mom this week as she had her first "real" fall at the barn. While it was scary she is fine and amazed me with her courage as she often does. Once we were sure she was okay she chose to get back on Quigley and even jumped before calling it a day. If you had told me a year ago the change I would see in my anxious little girl I wouldn't have believed it. The environment at Stable Strides and the connection she has forged with Mandy have completely changed her! I am not even sure I would call her timid or anxious anymore. Twice this week we watched her push through hard situations and come out smiling. Her determination and bravery are on display each day and it is so amazing to witness. I cannot say thank you enough to Mandy, her daughters and the entire barn family not to mention Lila and Quigley for truly transforming Maddy into the incredible girl I see before me today not to mention what a true Equestrian she has become. 

Maddy rode her best girl, Lila last week!

This goofball makes us smile all the time!

He really is a gentle giant!

Always love for her Lila Bean!

Next week I am hoping to have a medical update on myself as I have multiple tests and appointments over the next 10 days. Thank you for always walking beside us as we try to always CHOOSE JOY and TRULY LIVE! As you pray for our family please pray for the kids health and safety and for this Mama's heart as it isn't always easy to be a mom to these special kids!

Ali

Test Results and Another Horse Show

 This last week or so has been a whirlwind. 

I will start with a follow up to my last post. Maddy and I have begun our homeschooling journey and so far it has been great. She is doing really well, has been incredibly cooperative and we are both enjoying the flexibility.

Alex went to support his roommate at his luncheon.

This past Friday we headed to Houston for a doctors appointment, horse show and a test to be done today. The horse show was very different from our "regular" shows. The Special Children's Committee of the Houston Rodeo go above and beyond to make this a special time for the riders and families. They provide meals, help load and unload the trailers, and make a big deal of all the riders regardless of placement. Maddy and I enjoyed time with our team and she loved getting to learn some new things and care for Quigley. The showing was a bit tough. The arena was very small and was split in half so that was a little tricky, but Maddy and Quigley did their best and each time they compete we learn a little more about what works best for him at a show. 

Braiding Quigley's tail before he headed home.

Scratches and love for working hard all weekend

Maddy and Katie taking out his bands

Taking out his ear plugs

Putting in his ear plugs

Lunging

Maddy and Mackenzie

Team Photo from opening ceremonies

Waiting for opening Ceremonies

Ready for English

Waiting on Showmanship

Maddy and Caroline

Maddy and Mackenzie

Always love for her sweet boy

Maddy and Suzanne who she started this journey with 6 years ago

Maddy and Jackie putting braids in to get ready to show.

Maddy and Gloria (another coach)

Today's test was a bit rough although not totally unexpected. Maddy had a tilt table test to try and get some answers for her daily dizziness and lightheadness. The way a tilt table test works is they hook up a ton of monitors: EKG leads, two blood pressure monitors (one normal and one continuous), one to measure the blood flow/oxygen to your chest, one to measure the blood flow/oxygenation to your upper body and one to measure blood flow/oxygen to your lower body and two monitors on your forehead to measure blood flow/oxygenation to the two sides of your brain. They monitor you lying flat for 7 minutes to get baseline numbers. Then they raise the head of the bed to 70 degrees so you are almost standing upright. They intend to have you stand for 30-40 minutes and then lower you back to lying. Maddy lasted standing for about 20 minutes before she suddenly became very hot, nauseous and started seeing dots. The doctor could see huge changes on the monitors and knew she was about to pass out so they lowered the bed quickly back to lying down. They spent about 20 minutes going over the results with us. She was diagnosed with severe autonomic dysfunction. She has two forms both Neurocardiogenic Syncope and POTS (postural orthostatic tachycardia syndrome). There was a ton of info most of which won't mean much to non medical people but her baseline HR was too high at about 95. It actually rose all the way up to 147 doing nothing but standing! Her blood pressure (they were only monitoring the systolic or top number. At baseline it was okay around 100. Right when she started feeling bad it fell to under 50. She will be starting two new medications in hopes we can help alleviate some of these issues. They also gave us some recommendations on fluid and electrolytes to hopefully help.

We made it home this afternoon and will have to quickly get back in normal mode because we have a bunch more activities and appointments this week!

Thanks for always loving our family and walking through us with all the highs and lows!

Ali