Tongue

 

I went to town this afternoon to run some errands. Just me and HMae and I was quickly reminded of exactly why we are going ahead with the tongue reduction surgery. HMae had fallen asleep on our errand run. I went into one last store toting her in her car seat. When a women commented on her sticky out-y tongue the very second we walked in the door. She was sweet and by no means did her words offend me but It has me wondering if HMae had a huge nose would people comment nearly as much? If only they knew what my sweet girl is going to have to go through in a few weeks. I would tell them but I always feel guilty weighing their hearts down. The truth is she doesn't just have a big tongue. Her tongue seems minor when in comparison to the other implications of BWS. She also has a much greater chance of developing childhood cancer by the time she is ten. She will have to have blood tests every six weeks to monitor her AFP levels. Ultrasounds every three months. Physical therapy, occupational therapy, speech therapy. Another possible surgery to correct her kidney function. At first, I could have crawled into a corner and cried for days. But I instantly realized none of that would do any good. We try to flip it to the positive side as much as possible. Yes, we have long car trips as we travel to CHLA but we also get to have our girly time! We make laps around Nordstrom as we scour the shelves for the newest headbands and bows. We rest our heads in comfy hotels. We have the best road trip buddies that keep us company during the long drive. We wear the cutest band-aids after blood draws. And don't forget she gets to wear the most adorable of bibs to catch all that drooly drool! It is what it is and we couldn't be happier to be on this journey with our sweet girl.

 

As many problems that this little tongue has caused and will cause in the future I must say I'm going to miss it! You know that feeling when you are looking at someone and you know there is something different about them but you can't quite place what it is. A haircut maybe? Shaved off a mustache? I feel like that is how we may feel after this surgery. This little tongue is so much a part of her personality. We have started to notice that as HMae gets older she is gaining more control over it and has started to make the funniest noises. As cute as it may be breathing and eating and talking and sleeping are much more important. :)