Airway, Digestive and Voice (oh my)

Tuesday day was our highly anticipated visit to the Airway, Digestive and Voice clinic at Children's Hospital (with Grace - need I even specify which child? I think not.). Grace, by the way, is now about 18lbs 6oz. This is a new record just in time for her 2nd birthday. Such.a.peanut. We love it. This weight gain is made possible in part by: chocolate donuts at church and chocolate pediasure. G loves her chocolate. That's my girl.

Anyway, back to the clinic. This is the place where ENT, Audiologists, GI, Speech, and Pulmonary specialists each examine and consult (while we are there), and leave us with one plan. One. Plan. Let us rejoice and give thanks and praise. Finally. There is still the next big thing on the 7th of October which will shed all kinds of light on Grace's trachea (the floppy) and her esophagus (the narrow) and then they will dilate the narrow and hopefully it will help for much smoother mealtimes all around. Until they scope all of that business, we really don't have too much new info, but we have some and it is very interesting indeed.

The ENT doc cleaned out G's ears of all of her "impacted wax", and impacted it was. As it all came out - and when I say all...I mean an eye-popping amount of wax, I couldn't help but think there are now bits of China left on that exam table...awwww. Her ears looked great - no fluid - which is good to know since this would be the first time any doctor (in the US) has had a clear shot at those ear drums. They are just the cutest ear drums you've ever seen. Even I had a look since it was all up there in living color in high-def for all to see. Seriously, I've seen more of this girl's insides than the rest of my family + myself included, combined. There really won't be more info from the ENT perspective until after the rigid bronchoscopy.

The pulmonary doc compared her most recent x-ray to her first and said it looks like there is some improvement - not huge - but we'll take it. It's a wait and see now with how her lungs do during cold and flu season. We will *try* to avoid people who are coughing as much as is in our control. We are so grateful that for the most part people have been really sensitive to keeping their coughs away from her. Please do continue! Grace has been pneumonia free since June - that might be a record. The longer she goes without a respiratory infection the better.

The speech/swallow specialist gave us some tips on how to help her eat so that it forces her to chew on the side of her mouth where her molars rather than the front teeth and then swallow. We have tried her suggestions and today (drumroll) Grace had her first piece of apple! She LOVED it. It was long and rectangular rather than a tiny chunk. Evidently, there is something to the long rectangular shape and what her tongue does as she chews. So far so good! She is SO desperate to eat "big girl" food and try what we eat. I've never been so excited to cut up an apple and watch it be enjoyed. The things we take for granted...

The GI doc gave us some new information. Where the repair happened in esophagus and trachea is exactly where her issues are today. Her esophagus narrows about a third of the way to her stomach and then opens again. It's not really *that* narrow according to a test she had in May. However, the esophagus is made to contract and squeeze food down to your stomach in a matter of seconds. All the nerves do their thing, from top to bottom, and down goes the food. The repair she had saved her life - but damaged those nerves. It was inevitable. The nerves at the top contract and do their job and then where it narrows - once the food gets through it's pretty much a free fall of food to the stomach. This will be something she will have to manage always and it's a matter of eating and then drinking so that the liquid helps keep things moving, and keeping bites small. Often times people post esophageal atresia repair will have a bit or reflux. The endoscopy should help us know if this is true for Grace. If so, she will need some medication to help manage it. Acid in an esophagus that doesn't keep things moving down, tends to hang out there and causes some problems. Ain't nobody got time for that.

Why in the world am I going into such detail, readers?  Because, since we've made "friends" with many adoptive families who battle health issues that we battle, if one shred of interesting info helps someone else have an "aha moment" about their kiddo - It's worth it to bore the rest of you with gastric juice talk and airway drama. I do apologize to those who are bored. Here's a few pics to bring you back:

She looooooves her boots. 

Since all the wax came out it was a good time to check the hearing. All is well, Praise the Lord. She turned her head to even noises I almost couldn't hear, which is fabulous news; because it won't be long until we are old and deaf (or deaf-er) and I'm depending on her to be a good listener when I can't hear the principal at her high school orientation. Har-de-har-har.

It struck me when we were sitting in that clinic, where we were only 4 months ago. Our trip to a Chinese Children's Hospital won't be soon forgotten. We are so fortunate to have excellent medical care; so very fortunate to have hospitals with clean restrooms. Let's be grateful for the people who care to use, and have a seemingly endless supply of hand sanitizer between patients. Let me assure you, I didn't see a drop of sanitizer at the hospital in China.

So we wait and we pray and we hope. I have learned to tune out the "she will never"..."she will always"..."she probably won't be able to..." I nod. I smile. Sometimes when I'm particularly brave and feisty (let's not kid ourselves, I'm mostly always feisty),  I let them know that she's already lived through more miracles then they could possibly imagine. They nod. They smile.

I'm waiting for more miracles. I'm believing for more miracles.