Loeys Dietz Foundation Conference

At the end of June my mom and I took Wyatt to Baltimore to our first LDS conference. We also had plans on taking him to John Hopkins to be seen by Dr. Dietz himself. Our trip could not have gone better! From the flights to the exam to the conference it was wonderful!

Wyatt fast asleep on his first plane ride

Our first morning in Baltimore took us to John Hopkins. I didn’t know what to expect. I thought that Cincinnati Children’s was big. John Hopkins makes Cincinnati look so small! The appointment was just what I needed. It was so wonderful to finally have a doctor come in and tell me about LDS and my son instead of what has become normal, me tell the doctor about LDS. We were able to get more understanding of LDS and new findings. Dr. Dietz and Dr. Lindsay, his mentee (not even sure if that is a real word or not!) were enthralled with Wyatt. It was so emotional. As a mom you just want to know that your baby is going to be ok. When his doctors don’t even completely understand what he has it is not 100% reassuring. The fact that Dr. Dietz and Dr. Lindsay could tell me that he was going to be ok and that we were on the right track really put me at ease.

Wyatt being held by Dr. Dietz. Dr. Lindsay is next to them.

During the appointment we also decided that Wyatt would start a new medicine called Losartan. This medicine is an angiotensin II receptor antagonists. It works by blocking the action of certain natural substances that tighten the blood vessels, allowing the blood to flow more smoothly and the heart to pump more efficiently. The hope, and our prayer, is that this medicine will actually stop and reverse the widening of his aortic root. Dr. Dietz seems very optimistic. He also wanted us to make appointments with urology (for a hernia that Wyatt has) as well as the plastic surgeon because of the shape of Wyatt’s head (will explain later 🙂 )

The conference is something that I can hardly describe. It was so wild! The moment I saw Quentin on Thursday night I knew that he had LDS. I could not believe that there was someone who looked like my baby. I literally could not stop looking at him – almost in awe! I can not even explain it. I was just so happy to see someone like my kid.

Most of the kids at the LDS conference.

When we registered at the conference we were immediately welcomed like family. Hugs and smiles all around. I was finally able to connect in person with people I only knew via facebook. The first night of the conference was just a get to know you time. We heard some amazing stories from parents of kids with LDS and adults who have LDS.

The next day we had breakout sessions. These sessions were so informative. I loved hearing about things to keep an eye on, things to expect, things Wyatt needs to stay away from etc… The information was great but it was the stories and the people who I could not get enough of. The fact that I do not know anyone here in the Cincinnati area with LDS is hard. It is so great to have other people who know what you are going through, people who actually “get it”.

Wyatt and his BFF, Connor, hanging by the pool!

Heading back to Cincinnati was bittersweet. I hated to leave our new family but I was excited to get back and start working on the “homework” we received from Dr. Dietz. I was also excited to tell our team of doctors here in Cincinnati about our trip and the fact that Dr. Dietz had indeed confirmed Wyatt’s diagnosis of LDS and not Marfans.

Overall the conference was everything I expected and more. It was great for Wyatt to be seen and get introduced to his new LDS family. But, I think the biggest effect was on me. It may sound selfish but for the last year we have felt literally alone here in Cincinnati. Not that we don’t have a huge support system, because we do! But, no one can really understand what we have been through other than other LDS families. The fact that we now know many of them and have their support has made a huge difference!