March to the Arch 2023

 As a mother we all have dreams for our children. I would say that most people have some dreams for their kids in common...to have children who have good values, to believe in themselves, to find what they love, and to be loved for who they are. I would say this is magnified to a degree when you have children with special needs because of how much they struggle and what they have to go through. But when this is achieved the joy is even greater. I have seen this in both of my kids, but so much so this past week for Maddy. Over the past two and a half years, I have watched Maddy thrive and grow in ways that are astounding. I so clearly see the little girl who cried every lesson for the first few months with Tammi because she loved horses and riding, but was so  petrified due to the mistakes of others. I can see the little girl who would turn her back when people spoke to her or hide behind my leg because she was painfully shy and could not look at someone when she spoke. The amount of love and encouragement, prayers and tears, and hard conversations that Tammi has poured in to Maddy have changed a little girls life. Tammi, Sarah, the volunteers and other families have loved on Maddy and taken her under their wing and nurtured her to allow her to grow in ways that I wasn't sure were possible. Maddy is a talented little rider, but I see so many moments that mean so much more. I see the smiles, I see the hard work, I see the determination, I see the way she looks someone in the eyes, I see the trust, I see the respect, I see the confidence, I see the joy, I see the sass because she knows she is loved. These are gifts that she will carry with her through her lifetime. Theses are gifts that warm my heart.  I thank God for bringing these people into our life and making my little girls dreams come true.

Maddy prays before every ride.

Look at the joy on her face

These three make an incredible team

This picture says everything about the relationship between coach and athlete

She looked right at this judge and answered his questions.

Thank you to everyone who has been a part of this journey. I cannot wait to see where this road leads. A very special thank you to my friend Cairn for capturing these special moments (and so many more). I thank God for his faithfulness and the answer to so many prayers.

Ali

Where do the days go?

 I really am unsure how the days and weeks fly by so quickly!!! This week has been extra busy with quite a few appointments!

I'll start with Alex. Things are about the same with him. He is feeling better overall. He still is having some pain and bleeding, but not nearly as worrisome as a few weeks ago. His blood counts have dropped a bit more so we will continue to monitor those and make sure we don't need any further interventions. We are still hard at work on financial aid and scholarship applications, but are in pretty good shape overall for him to start school in August! He had his final visit with our pediatric ophthalmologist this week as well as his first visit with an adult Nephrologist! We really liked the new nephrologist and felt great about the visit. Our final appointment for Alex was with the pain team. They were really happy about his college plans and how far he has come. We have a long term plan to try and wean down on one of his pain meds in a year if his transition to college goes well. Nobody wants to rock the boat right now understandably!

Ms. Maddy Moo saw our ophthalmologist and her urologist. She is getting really brave with things that used to be so scary! I attribute a lot of that to all the work we have done addressing anxiety through her therapeutic riding. We have a plan for what is to come next as we sort out her bladder issues. There is more testing in the future and we are changing medications. I am hopeful we can find some answers and treatment to help her find some relief. On a positive note she continues to love her time at the barn as well as her tap, ballet and art lessons. She enjoys school especially the time with friends. With her disabilities school work isn't easy for her, but she continues to work hard and persevere and find success! We have a fun and exciting week coming up. Maddy is participating in a horse show that Supports Cook Children's. Not only do we love that she gets to do her favorite thing all while supporting the hospital who has taken such amazing care of the kids, but she is also competing in a few new classes! She is actually showing in 6 classes this show!!!She will do the same three western classes she typically shows in along with showmanship and two English classes. 

I also saw my rheumatologist this week. We have added a third medication and are hoping we can finally get a handle on my autoimmune issues. I definitely don't have time to not be feeling 100%!

We would ask for continued prayers for health all around. Also, for more scholarship money for Alex and for Maddy to have an awesome show!

Ali

PS- If are you are looking for a way to support Maddy's new riding program, we have a T-shirt fundraiser currently running. Click here to check out the cute shirts available in 6 colors!

Such a Long Road

 Many of you have followed our journey for so many years. What a crazy, long, beautiful journey it has been and this last few days has me thinking back on what a full circle we have traveled. 

Almost exactly 14 years ago, Alex and I were in the middle of a LONG hospitalization (almost 9 months). I had registered Alex for kindergarten at the elementary school a block from our house. Alex's health was not good and very unstable. Dr. Koenig and Dr. Pacheco came into our hospital room one day and sat me down to tell me they did not feel like Alex was well enough to attend school. So while Alex and I remained in the hospital, Bruce had to go over to the school and un-enroll him for his Kindergarten year. So how amazing that this week in Houston these two incredible doctors who are so much more like family and have been with us through our hardest days shared so many of the same emotions I have had. We saw Dr. Koenig first and she got tears in her eyes as we discussed next year and Alex's first year of college. She said she remembered that sick little boy and didn't think we would ever see this day. She told Alex that she expected to be invited to his college graduation and would be the one cheering the loudest.

Next we saw Dr. Pacheco who shared so many of the same emotions. She has written him a recommendation letter. She has answered so many calls and texts to advise me on the care he needed. She is the one my kids loving refer to as their "Puerto Rican Mother".  She is the one who greets us with hugs and asks for me to send pictures of the kids accomplishments. She also shared her sentiments that she never though we would see this day. 

How many times these women and I shared tears. How many times we have held each other fearing the worst. How many times they have had to deliver heartbreaking news to me while their hearts were also breaking for these children they love. How many times they have encouraged me and reassured me.  How dearly they have loved us. And how perfect that they were with us on the day we received the joyful news that another dream would come true for Alex. These women are so much more than our doctors. They are an integral part of our lives and our story. My children are alive because of them and the ways we have worked together to ensure their best lives. I am so very grateful!

Medically there is nothing to update on Alex. We are working on trying to keep his Colitis under control and minimize the blood loss. For Maddy they had a few concerns/recommendations. Dr. K is very glad that we are finally going to have her seeing an endocrinologist on a regular basis. She feels like they need to be treating her hypothyroidism and following her osteoporosis more closely. I was hopeful that she would have some ideas regarding the kidney/bladder issues, but unfortunately she is stumped. The issues we are seeing are sometimes see in kids who have high tome, but Maddy has hypotonia and doesn't even have normal reflexes. She did think it was a good idea to repeat the MRI and rule out a tethered cord as well as the other testing the urologist has mentioned. She also let me know that there is new, better genetic testing available. Since we keep adding new issues/diagnoses for Maddy she wanted to do this new testing to see if we can get better answers that may open more treatment options. It will likely be months before we have results, but I will continue to pray for more answers to help my babies. Dr. P did more lab work on the kids, but didn't make any changes. She also spent some time encouraging Maddy as she has a daughter who has severe dyslexia who they were told would never even be able to complete middle school. She is now a pediatric neurologist. She wanted Maddy to know that she can accomplish anything she sets her mind to!

A little more about Stone House where Alex will live next year. Stone House as a whole is comprised of 32 male freshman and 8 upperclassman. They are broken down further into 4 "houses" with 8 freshman and 2 upperclassman mentors. Each of the houses has 4 bedrooms and a shared living space. The idea is to live in community as they grow in their relationship with each other and the Lord. They meet weekly as a group and one on one with their mentor. They do bible study together. Alex desperately wanted to be a part of this as he loves the idea of having this close knit group and having mentorship and discipleship opportunities. He will know shortly who his roommate is as well as his mentor and housemates. They will get some time together during Orientation. To say he is excited would be the biggest of understatements. This sweet child who has had the hardest life and missed out on so many things because of his medical condition is seeing the answer to so many prayers. He has remained faithful and shared his testimony so beautifully for so many years to serve others. I am so happy for him that he seeing the fruits of his faith walk so clearly now.

A few prayer requests before I sign off...I have had an incredibly hard couple weeks with my own health. I would ask that you keep me in your prayers. Also, for continued health for Alex and relief for Maddy for her joint pain and bladder issues.

Thank you for standing beside us and celebrating our joys and comforting us through our tears. We are so grateful for the constant reminder that we are never alone and we have a vilage who walks with us through every part of life.

Ali