Johns Hopkins

Today I made my second trip to Johns Hopkins in as many days. On Monday Jack had a followup appt with Dr. G, his GI doc. By pure coincidence Wyatt had an appt within a half hour of Jack so we got to visit with Gina, Benji, Wyatt & Chloe. I can't believe how big Wyatt & Chloe are getting. Wyatt looks so great too! Gina wrote a really great post about Hopkins and how you bond with people there and form lifelong friendships. It totally expresses how I feel too.

Jack's appt went really great. He is 75th percentile for height and 10th percentile for weight. That puts his height to weight ratio at under 3% but his doc said that he's doing great and is exactly where you would hope a CDH kid would be. He's just going to be tall and skinny but most of the men in our families were the same way when they were young.

Today I had a full day orientation to the Johns Hopkins Parents Advisory Committee. We had various training to officially become Hopkins volunteers. I was humbled by the amazing parents I met. We all traded stories about our experiences and instantly formed a bond. I'm so honored to be on this amazing committee and have the opportunity to really make a difference for families that find themselves at Hopkins. We have lots of ideas and I think we'll be very busy over the next few years. I met another CDH mom, Pamela, who is also from Frederick. Ironically, she knows my friend Becky who did the 19 week sonogram when Jack was diagnosed. When Jack was diagnosed Becky gave me a card with the website for Cherubs (a CDH online support group). She said she knew someone who just went through a CDH pregnancy. It turns out that person was Pamela! What a small world. I think that meeting all these parents and staff today helped me realize how lucky we are to have been through our CDH experience at Hopkins. As Gina says in her post, it's an amazing place. As a parent, I can't help but feel forever grateful for the kindness and compassion that everyone showed us. I hope I can give back - even if only in a small way.

As for Jack, he is getting over his cold without much drama this time (knock wood!). He's been a bit cranky but I think he has a canine tooth coming in. Tonight he was talking in "Jack-ese" for hours on end. I'm hoping he just starts talking in real words again soon. The speech therapist will visit us next week so hopefully she thinks everything is fine.

The pregnancy is also going well. I see Dr. Kramer on Friday. I hope I can get a 3D sonogram!
Vic