Amazing Two Days!

 I realize I haven't updated in a few weeks. Life has been pretty much the same. Lots of school, horseback riding and forensics! However the last two days have been amazing!

Yesterday Maddy participated in the Victory Spring Spectacular. For the first time Maddy would be competing completely independently and she was in a walk trot class. She was extremely nervous as this was a big step up for her. I could not be more proud of the way she competed. Tammi(her coach) and I have the privilege of watching her improve on an almost daily basis, but to watch her put aside her nerves and ride beautifully was such a joy! She is relentless in her focus and determination and is an incredibly hard worker. I never care about her placement, I just want her to be proud of herself and have fun and be a good teammate. Yesterday she did everything that was asked of her and she was rewarded with a second place finish in both of her heats. Her combined score earned her the high point belt buckle for her class! Not to mention she was in a class with 4 teenagers! Maddy was so lucky to have Mimi, PopPop, Alex, Bruce and Mrs. Whitington there to cheer her on along with all of her buddies at the barn! I am so grateful for all the ways that Victory Therapy is shaping her. From the love of Tammi and the rest of the staff and the volunteers, to the dedication, to the hard work to the work of pushing through her fears, to the many prayers that are said, Victory is shaping her into an amazing little girl that I am so proud to call mine. 

Maddy with Kirsten our barn manager

High Point Champ!

Maddy and Ginny (one of her favorite volunteers)

Maddy and Tammi

Maddy and Emerson

Maddy and Sarah

Mimi with her babies

Maddy with Mrs. Whitington, her teacher

Awards for Maddy's class

Maddy and April, Gabby's owner

Celebrating after Equitation

Finishing Equitation

Equitation Lineup

A rare smile while competing

Mounting for her first heat

Maddy and Tori (one of her riding partners)

Maddy with Avary and Emerson (two teammates)

Today we switched gears and spent the day at another college tour for Alex. This one was special and oh so fun! For the past six years one of our favorite events to speak at for Cook Children's is Dance Marathon at TCU (Texas Christian University). Since the beginning Alex has thought this would be the school he would wan to attend. Today we took the first step and went on an "official" tour. It was completely different than our tour at UNT, because we have been on the TCU campus so many times and already feel connected. IT did not have the same excitement because it wasn't "new", but we both left feeling like it would be a great place for Alex. It has such a community feeling and they have amazing programs set up to get incoming freshman connected. It feels like Home. I'm not sure there is higher praise than that.

I would ask for your prayers for both of my babies. Maddy continues to struggle health wise. She has her long awaited MRI of her brain and spine tomorrow. Please pray for her health as well as her anxiety tomorrow. Please pray for Alex's continued good health and us as we navigate a new road that we didn't think would be possible. Alex is already taking over more of his health care which is hard for him both physically and emotionally. Pray that I am able to be strong and guide them so they may become who God created them to be. 

Ali

Blessings and Prayers

 Another week has passed and I am beginning to feel like a broken record. Our days are split between praying for Maddy to feel better and seeing so many incredible blessings around us.  

This week was spring break so Maddy was excited to have a quieter week with no school or ballet. It also meant I had a little extra time to spend with my mom. We are so happy to have them living here, but with the craziness of our lives we don't get to hang out as much as we had envisioned! Saturday my Mom and I went and had lunch and window shopped at a few antique shops in our town. On Monday, Mom tagged along to the mall with me and the kids so I could get Alex some new shoes. It was fun to have a few days just spending time together. 

Tuesday Maddy had her esophagram to see if there is a blockage in her esophagus causing her difficulty swallowing. This test was very hard for her as she had to drink barium (which tastes nasty) while lying down. Drinking laying down isn't easy for anyone, but especially when it already feels like you are unable to swallow and choking. We got through the testing with A LOT of tears and a very patient tech and radiologist. They were not able to stretch the esophagus as much as they had hoped which would have involved drinking large amounts, but with the little bit she drank they didn't see any obvious causes. I did get an email from her GI that he is going to schedule an endoscopy ASAP to try and determine the cause as just this week she was crying again because she can't eat some of her favorite foods. She has lost weight and she is already too low on the charts so we are hoping to get this figured out! After her test we were able to meet a new friend from  horseback riding for lunch. It was so fun to have some time for the girls to play and get to know each other a little better. Then we headed to ride where Maddy had her first completely independent class ever! She even did our "Victory Lap" without being hooked up to a leader!

Maddy leading Gabby to mount

Maddy riding Gabby

Victory Lap totally independent!

Wednesday  Alex had the privilege of spending the morning observing at a Vet Clinic. He loved meeting the animals and learning a little about veterinary science. He is hopeful he can go back again and spend some more time. As for me and Mad, we took Maddy's service dog, Hart to the barn to meet all of her favorite people and then after Physical Therapy went for a swim at Mimi and PopPop's! Speaking of Alex, he has also done a good job this week starting to take over more of his medical care as the first steps towards being able to attend a University!

Thursday was more horseback riding and then another first as she had a sleepover with her two closest friends from riding! Riding was extra fun because one of her teammates was making up a class and needed to ride Gabby, who Maddy usually rides on Thursdays. Blue her other favorite horse had thrown a shoe and was sore so she needed to ride someone different. 5 months ago Maddy had desperately wanted to ride a horse that was new to Victory named Metro. He is HUGE (17 hands) and back then Maddy couldn't get him to move no matter what she tried (she rode him twice)! Over the past few months, Tammi and I have watched Maddy make major strides in her riding both technically, but more importantly in confidence. Tammi chose Metro for her to ride Thursday (and Friday) and she was amazing! She rode him completely independently and was able to trot all over the arena and navigate all of her classmates and volunteers! I was more proud of that ride that almost any other. She had a great time at her sleepover and can't wait to do it again!

Riding Metro

Game Time

Kasey came to visit!

While this has been such a hard time for Maddy medically- struggling with awful migraines and joint pain in addition to the swallowing troubles, I am reminded daily of the many blessings surrounding us. I have to start with Tammi and the entire staff, volunteers, and friends at Victory Therapy Center. Tammi and Maddy have such a special relationship. Maddy wants so badly to prove to Tammi that she is a good rider and she trusts and respects Tammi more than just about anyone. Tammi on the other hand wants so badly for Maddy to truly believe in herself and see how amazing she is. Tammi has the incredible ability to know exactly what Maddy needs on any give day whether it is extra love, an easy lesson, or to be pushed and told she can do something when she doesn't think she can. Tammi prays over Maddy regularly and loves her dearly. The volunteers and Maddy's friends bring her laughter and fun and make Victory her favorite place.  I am so grateful for Victory for providing an escape for Maddy especially during these days when she is really hurting. Having a passion that motivates her to push through her pain and continue living with joy is such an incredible gift. And I can't speak about this without thanking Help Mito Kids for allowing us to provide this therapy for Maddy. Without their generosity and help Maddy wouldn't be able to ride nearly as much and I can't imagine what negative impact that would have on her. 

Please continue to pray for answers and prayers for Maddy, for continued health for Alex and for endurance for me as I try to be the best Mom I can be.

Ali

Quick Update

 This last week has been an absolute whirlwind!

There have been some really high highs and a few lows. 

The absolute highlight of the week was taking Alex on his first college tour! As any long time followers of my blog know, we have been told most of Alex's life that he would not likely live this long. And even a year ago going away to college seemed unattainable. But as Alex has experienced some of the most stable times of his life he started talking about wanting to really get to experience college. My saying his whole life has been "there is no point in working this hard to keep him alive if I don't let him live." I wholeheartedly believe that and now I am prepared to let him truly dream and live. Alex and I are both realistic in the fact that his medical care is extensive, time consuming and at times scary because mistakes can be fatal. So with that in mind we knew we needed a little more time and that we needed to have a school that was close enough to home distance wise. (Plus he can't bear the thought of being far from Maddy) He quickly narrowed down his two top choices to University of North Texas and Texas Christian University. They are very different and both about 30 minutes from home. We have done A LOT of fundraising and speaking events at TCU and he knows he likes that school. UNT has a degree program and lots of research opportunities that really excite him, plus some of his best friends attend or will be attending. We visited UNT and had a campus tour this week and will do the same at TCU in a few weeks. He likely will not attend until Fall 2023 while he works on some independence in his medical care. We soaked in the whole experience, but when we got home I was completely overcome with emotion. I cannot believe that the sick, fragile boy who has spent well over 1000 nights in the hospital is at a place where he can go live at college! What an amazing testament to prayer and the faithfulness of God!

The week has not been as good for Maddy. She is struggling with quite a bit of pain right now. She has had headaches and joint pain daily with her pain level most days being between a seven and nine on a scale of ten. I am often struck by her toughness as she continues to push through even when she feels horrible because she doesn't want to miss out on life. We continue to hope that we can find answers and a solution to help her feel better. The other main issue is that she is struggling to swallow right now and feels like she is choking. We have a swallow study scheduled on Tuesday and hope we can figure out what is going on.  While she struggles medically she continues to amaze us with her progress both at school and horseback riding.  She is doing incredible on her assessments to test her readiness for third grade and is riding completely independently in all of her lessons now. She is currently preparing for an in house horse show where she will compete in a walk/trot independent class (no leader) for the first time. This little girl is tougher than most of us can imagine. Don't be fooled by the smiling pictures you see on Facebook. This girl deals with an incredible amount and does it with strength and grace. I am incredibly proud of her as she continues to prove herself to be an extremely hard worker and the epitome of perseverance. 

I finally have my knee surgery scheduled (April 13) and it can not get here soon enough. I have been dealing with daily knee pain for almost 6 months. I am hopeful for some relief following surgery.

Please pray for Alex as we tackle these next steps, for answers and relief for Maddy and a successful surgery for me. We are so grateful for each one of you who enrich our lives with your friendship and love.

Ali