TR (Tongue Reduction) Surgery for Miss Addy

We made it to St. Louis. Paul and I flew separately. The tickets for Addelyn and me were donated by the Beckwith Weidemann foundation, and a dear friend of my mom's gave us a flight for Paul. We have been humbled by peoples' generosity.

Addy was a trooper on the flights. Not much sleep, but not much fuss either, so I can't complain. I got to enjoy a pat down in security because I had unopened liquids I needed to bring, so that was fun! Traveling solo with a stroller, car seat, base, huge diaper bag, and heavy baby is definitely not easy, but I did get a little help from Emmitt Smith (more on that later.)

We are staying at The Haven House, a non profit organization similar to a Ronald McDonald house. They provide us with breakfast, dinner, and a shuttle to and from the hospital, amazing! Again, humbled by generosity. My friend Hollie lives about 10 minutes from where we are staying, so it has been so nice to see a familiar face and extra help!!

Today was a long day. Addelyn's first appointment was with a speech pathologist in the child development center. We took the 11:00 shuttle to the hospital, even though our appointment was not until 2, but the next shuttle was not until 4:00. To our surprise, the child development center is not part of the hospital. We debated walking, until we were told it was at least 3 miles up the road, and it's COLD here. So, we headed over to Dr. Marsh (the surgeon)'s office to find out exactly where we needed to go. We were greeted Kristen, his BWS patient coordinator, who I've been in contact with for a few months. She is amazing!!! She ended up shuttling us around to our appointments with a big smile on her face, and would not take "No" for an answer.

We then met with the speech pathologist, who works specifically with BWS patients, she's worked with over 500 (I think that's the number she gave me). She basically did a developmental screen on Addelyn. She was very impressed and said that she is right on track developmentally, if not ahead. And of course she commented on how social and smiley Addy is. Everyone who meets her can't resist commenting on how joyful she is. We'll just continue to watch her oral communication development, because statistically some BWS kids will need speech therapy in their early years.  I was so happy to hear that we will have the opportunity to meet with her again at the BWS conference in July.

Our next appointment was a few hours later with Dr. Marsh, the surgeon. After her evaluation, he told us that Addy makes a perfect candidate for tongue reduction and feels confidant that he will have nothing but positive results with her surgery. We feel very fortunate that we found Dr. Marsh. He is a very highly acclaimed pediatric maxio facial plastic surgeon and a pioneer and respected leader in the world of BWS tongue reduction surgery. He has performed over 250 tongue reductions, all with positive outcomes. He was very confidant and professional, but showed excellent bed side manner in working with Addelyn and explaining everything to Paul and me.

After meeting with him, we got to meet with his nurse, who will work with Addy in the PICU and throughout recovery. She went over the procedure again with us and explained what will happen after and during the recovery process. We got to view a slide show of before and after pictures of different kids as well as photos of the healing phase. Not only is she is very educated and experienced with TR surgery, she is passionate about her work with BWS TR kids. She has spent the last 15 years of her career studying the healing process and altering the recovery/healing methods to best fit the needs of these tiny patients.

It's been so amazing to be around people who are so educated in the field of BWS. We have been blessed with VERY AMAZING doctors in Arizona, but because BWS is so rare and because the effects of BWS are almost always outgrown during childhood, we haven't had the opportunity to talk with anyone who works specifically in that area.

On a funny note, everyone keeps telling us how tiny Addy is. I guess on the BWS spectrum, she is pretty small. Most BWS children do A LOT of growing in their very early years, and although by age 8 or 9 level off to their predicted heigh/weight growth pattern, they are very large infants and toddlers. Addy is big for her age, and Savannah was too, so it's so funny to hear people tell me my kid is small!!!

So, with all that said and done, Addy will have surgery tomorrow morning. We feel confident that she will be in the hands of the best, and we'll keep everyone updated.