A show, VBS and a trip to Houston

 I swear the summer might be even crazier than the school year! These kids keep me running, but I wouldn't trade it. What a blessing it is to be the mom to these two kiddos.

The weekend right after we got home from our trip to Florida, we had the SSF Fun in the Sun Show. Maddy originally wasn't going to do this show, but Mandy asked her to just do a few classes. How could we say no to spending time with our favorite boy and barn family! I was volunteering so I only managed to get one photo. Oops!

And what else could we squeeze in? How about a week of VBS. For the first time in almost 20 years, I did not have a kid participating in VBS! Both my kids have aged out, but Maddy was excited to volunteer. Alex usually volunteers, but with his internship he wasn't able to. Maddy and I shepherded a second grade class for the week. Maddy quickly hit it off with one of the other volunteers and really enjoyed her week.

After squeezing in a few lessons at the barn, we had an appointment with our GI Doctor on Friday. He was pretty happy with both kids. Maddy always needs to gain more weight, but he is not too concerned as she appears "healthy, just very skinny". He is going to check some nutrition labs on her just to be sure. He likes that she is self regulating her slow motility and nausea by eating frequent, small meals. I was also glad he could listen to Alex's lungs as Alex has been coughing for almost 2 weeks with no relief.

I was supposed to go away for a girls weekend, but with Alex not feeling well and June being nonstop, I let the girls know I couldn't make it. As only the best of friends would, they decide not to go without me. We will reschedule when everyone can make it and we snuck out for dinner and dessert and a few drinks. These girls have walked with me every minute of the kids lives and I don't know how I would have made it through the early years without them! They are the definition of ride or die friends and I am so grateful for them!

Early yesterday we headed to Houston for a few appointments. Dr. Pacheco was first. There is not much to report from this appointment except how much we love Dr. Pacheco. My kids call her their Puerto Rican mother and she truly is so much more than a doctor. She (along with Dr. Koenig) fought side by side with me to keep Alex alive and then Maddy when she was so sick her first few years. And while her medical expertise is invaluable, she is so much more. She takes time to encourage all of us. She asked Alex if he truly wanted to be a Clinical Psychologist. She encouraged him to not settle because he can accomplish anything he sets his mind to including medical school if that is his wish. She has a soft spot for my Maddy Moo because her oldest also has dyslexia and struggled in school. She is now completing her fellowship to become a Pediatric Neurologist. She sees Maddy and encouraged her to chase her dream of working with animals, but not sell herself short because she is capable of doing whatever she wants. I appreciate that she always tells me and anyone who will listen what an amazing job I have done raising my children and that it is rare she sees patients with my kids level of illness that are "normal" and emotionally stable. As someone who doubts myself and my parenting regularly, I appreciate that she knows what I have had to manage and that she feels like I have done a good job as a mom. 

Today we saw Dr. Koenig, our Mito Specialist. She was really happy with how stable Alex has been and agreed to only see him once a year unless he needs her. To say this is a HUGE milestone is understated. There was a point when we saw her every 4-6 weeks. She doesn't have any concerns with Alex and wants us just continue doing what we are doing. She was a bit more worried about Maddy. Her Dysautonomia is very severe and we need to continue to make sure we get fluids in and keep an eye on her vital signs. Her blood pressure yesterday was 80/40 which is far from ideal. And she continues to be lightheaded and dizzy on a daily basis. She also let them know that she flashes of color and spots whenever she stands up. We also discussed what needs to happen before and after her surgery in November to keep her safe from a Mito standpoint. A few more appointments needed but nothing crazy. Her biggest concern is her spine. She doesn't want Maddy to have to stop riding (and knows we won't do that), but she also doesn't want to have worsening back pain or damage. Maddy and i explained the difference between English and Western and why Western hurts more. She suggested stopping western altogether, but as much as Maddy doesn't love Western, she doesn't want to completely give up either. I will have a conversation with Mandy and we already have some ideas. But Dr. Koenig also would like her to see a spine specialist who works with athletes to make sure we are doing everything we can to keep her safe and healthy. She also wants us to have a virtual appointment with their new genetic counselor. I think that is all. Phew!

Alex is back to internship tomorrow and Maddy and I hit the road on Monday to head to IL for Palomino Worlds. 

Please pray for Alex to feel better and Maddy and I to have safe travels!

Ali

Summer Vacation

 What a week we had in Florida visiting family! There was so much fun and so many good times and laughter, but also some sadness as learned of the passing of my Godmother. 

I will start with Trishy so I can finish with the fun. My Dad has six sisters, but Trishy was always "my" aunt. Trishy and I had a really special relationship. We spent every Thanksgiving of my childhood at her home in Pennsylvania. She had a 4 story townhouse. The fun happened on the top and bottom floors. The top floor was a loft and I remember me, my sister and my cousins having so much fun up there and sliding down the side of the stairs over and over. The bottom floor had couches and a TV, but the real draw was the dance floor and the disco ball. Talk about fun times! But as much as we enjoyed the townhouse, we LOVED their beach house at the shore. The house on the bay of the NJ Shore was such a beautiful place. We visited so many times in the summers and once I was old enough I would spend a week each summer by myself with Trishy and jack. We would knit and cross stitch and cook and just enjoy time together. Trishy and I remained close through the years. She loved to hear about the kids and always let me know she thought I was doing a good job as a mom. Trishy's health had declined steadily over the past few years and while I will miss her desperately, but am glad she is no longer in pain.

 While this was a pretty quick trip, because the kids both have so much going on this summer. We squeezed in a lot of fun! Three beach days, a visit to St Augustine, and a visit to see Dad and celebrate his 80th birthday! Love that now when we visit Mimi, we also get to see Dad, Jenn, Jimmy and Skye!

Thank you for loving us!

Ali