Hope Haven, an update, & Rosalie’s BFF

27 Apr

I am writing this blog in the car on the way home from Jacksonville. Don’t worry, Will is driving. We just had our first visit to the Down syndrome center at Hope Haven in Jax.

When Rosalie was born, Will brought Mary Beth up to the hospital to have lunch & visit me. MB was running around my room, looking at all the pretty flowers & eating goodies that friends brought, when the door opened and in walked a nice man, well dressed & friendly. It caught us off guard, but once he introduced himself, we were so happy to see him.

You see, after Rosalie was born, we had so many people reach out to us, and so many friends giving us names & numbers of their friends who had children with Down syndrome. One name that kept coming up was “Libby Anderson,” or “Dr. Anderson’s wife.” It took a few days before it dawned on me who they were talking about. Libby! Will & I went to high school with Libby & she was a long lost sorority sister….who is not on Facebook, by the way, so that explains (sadly) why she was “long lost.”

Once I realized who “Libby Anderson” was, I could not wait to get back in touch with her.

The gentleman that came to see us that day in the hospital was Libby’s husband. That one simple visit from Eric did a world of good for us. He told us about their precious daughter who was 9 months old at the time. He let us know that all the many emotions we were feeling were normal and soon life would be back to normal – a new normal, but a happy normal. And he told us about this wonderful place called Hope Haven.

Hope Haven has a Down Syndrome Center that was started by Laura Watts. Laura’s son, Jonathan, was born with Down syndrome. Families come from all over the WORLD to visit the DS Center at Hope Haven. I called to get an appointment for Rosalie once she came home from the hospital. To get an appointment with all of the evaluations, we would have had to wait over a year. Luckily, we got in on a cancellation for today (Wednesday). Everyone there was so friendly and helpful and they all loved Rosalie. It was a jam packed day. We met with Laura, who provides a cognitive/educational evaluation & answers any questions about DS. Then Rosalie was evaluated by a speech therapist, a physical therapist, and an occupational therapist. They gave us exercises to do with Rosalie and also ideas on how to work the therapies into our everyday lives.

A physical therapist at Hope Haven demonstrating the football hold stretch to help with Rosalie's torticollis.

A physical therapist at Hope Haven demonstrating the football hold stretch to help with Rosalie’s torticollis.

They also suggested that she get started with physical & speech therapy as soon as possible. Babies Can’t Wait (Georgia’s early intervention program) is supposed to come on Monday to re-evaluate Rosalie. If they cancel again, I am taking matters into my own hands. I mean…seriously….it’s called Babies CAN’T Wait.

In other Rosalie news…right now we are dealing with her C. diff infection. We spent the first two months of her life trying to get her to poop, and the last month trying to get her to stop. She is on her second round of flagyl and we just pray that it works. I can’t really tell yet.

A little background: After the negative rectal biopsy in February and learning that Rosalie did not have Hirschsprung’s Disease, we were relieved, but we were still left trying to figure out what was wrong. She still could not poop without us making her or without plenty of Miralax. So we went back to Nemours in Jacksonville to see a pediatric GI. He was great, but he really didn’t tell us anything we didn’t already know….she has dilation in her colon. So he put her on Nutramigen, upped her Zantac, and sent us home. He called us back a few weeks later and said he had been consulting with some other doctors and surgeons and they reccommended Botox injections…in. her. anus.

Ummmm….no.

A. I am not injecting Botox anywhere in my infant, and definitely not in her anus. B. The results would only last a couple of months if it worked at all, and we aren’t paying that kind of money for a temporary fix.

So now we are hoping to get in soon with a pediatric GI in Savannah for a second opinion. We still don’t have an appointment. Guess who is getting harassed everyday by me next week…

Back to what I was first talking about, Libby & Eric. I plan on doing an entire post on our new Down syndrome “family.” But since I have already mentioned Libby and Eric, I wanted to share this picture of Rosalie & her BFF, Reagan. We are so blessed to have friends like Libby, Eric, & Reagan to travel this journey with!

Libby, Reagan, Rosalie, & Christina celebrating Woeld Down Syndrome Day with the DSA of South Georgia
Libby, Reagan, Rosalie, & Christina celebrating World Down Syndrome Day with the DSA of South Georgia

………………………….Have questions or need support? Email me at sweetrosalieblog@gmail.com or follow me on Twitter, @sweetrosalieblg

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2 Responses to “Hope Haven, an update, & Rosalie’s BFF”

  1. Lacey Stephens April 28, 2013 at 8:58 am #

    Libby was probably the first person I thought about when I first heard about sweet Rosalie! I was already for sure that you had heard about her and Reagan. I’m so happy that y’all were able to reconnect and can go thru this amazing journey together with those beautiful little girls! I ran into Libby a couple of times while I was pregnant with Collin, and her face just glowed at the mention of Reagan and how she will always be her baby 🙂 And again, I just know that God knew exactly what he was doing blessing you and Will with Rosalie. Your very first blog post about Rosalie and all of the signs throughout your pregnancy and your delivery story, was such a beautiful story. I laughed and cried reading it! I also left a really long comment that night…and it disappeared when I tried to post it. I didn’t ever go back and rewrite it, but it was such a wonderful post, and shows even more why God chose y’all!

    • sogamom May 15, 2013 at 9:51 pm #

      Thank you, Lacey! Sorry I am so late in responding. Your comments mean a lot to me! 🙂 Yes, I am soooo thankful for Libby, Eric, & Reagan! Watching Reagan & Rosalie grow up together is gonna be a trip!! 🙂 So much to look forward to! Love you, friend!!

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