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New Friends Meet - wolfhirschhorn.org

2015-03-08 19.33.44

We were so excited to learn recently that a family with a young daughter with WHS had moved into our area. Not the same town, but very very close by. Coincidentally (or by the Lord’s design, in my opinion), our paths crossed through our pediatrician — very respected in the area — who now has two patients with WHS: Elsa, and this new darling little girl. A pretty high percentage of patients with WHS, when you think of how rare WHS is!

Through our pediatrician’s referrals, our children now also share a neurologist and GI doc. And we also have the same OT. We’re a small study group (2 kiddos with WHS), but for our physicians and therapists to be able to compare notes monthly (and in some cases weekly) on what works/what doesn’t with these little ones is a huge blessing for both of our families.

Like so many WHS kids, Elsa has been through it all — ASD, seizures, G-tube, ear tubes, ophthalmology, audiology — and had every type of therapy. As she turned 3 recently, things have (dare I say it?) leveled out a bit. She’s gaining weight well, with the help of the G-tube and Peptamen Jr. 1.5 (just hit 27 pounds! 7th percentile for her age!), and weathered the cold and flu season pretty well — just one hospital visit for respiratory troubles. She still spits up now and then, and her developmental delays are significant. But it all feels familiar now, instead of like meeting a new and unwanted intruder in our lives every few months or so.

Walking alongside a family that’s very much in the thick of it — establishing baseline data and information across a spectrum of areas — has been a blast from the not-so-distant past. We really hope that we can help them along in their journey, as all of you have helped us with your stories, information and community.

 

3 Responses to New Friends Meet

  1. letty says:

    That is so amazing! I’m so happy for you’ll. I wish this would happen to us.

  2. Shirley Bidnick says:

    I always enjoy Elsa photos and stories. She is a doll, the sweet main character of her own story. I hope we will get to hear about her realationship with her baby sister and new friend.

  3. Rachel says:

    That’s so great! I wanted to reach out and say hello. I’ve been chatting with your mom off and on. Feel free to email if you want to stay in touch. While Addison doesn’t have the same diagnosis as Elsa I wanted to reach out and say we were thinking of you all! Elsa is adorable! 🙂 feel free to shoot me an email.

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