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