Friday, July 13, 2012

Cleft Appointment-Part 2

Okay so I love Children’s Hospital and their Interdisciplinary Team concept. I really do…but WOW was yesterday grueling. My entire focus was for the last 20 minutes of a 2.5 hour visit. We started with the Audiologist…sweet girl that poor Yaya just went nuts on. We had to know if there was fluid in her ears so you have to actually touch her ears and put a little thingy in it to check and then there was the otoscope in general, plus the hearing check sound booth…yeah it was terrible for Yaya. Plus, she was due a bottle about the time we were called in there. The result…she has fluid in her ears. No big shock, will likely mean tubes. The ENT would see her later in the appointment. So back out to the waiting room. Then we quickly got called back to our next station, so quick in fact that Eric was not back from the restroom when I was pulled back. We had to weigh and measure Yaya. She hates this you know. It’s been 3 times this week she has done this now. But I stepped on the scales with her and then was in a dilemma because I had no one to hand her off to but this really cute tech named Jason. Yaya readily went to him to my shock and concern. When I went to get her back she pulled away from me and leaned into him! WHAT?! The nurses laughed and said, “Don’t be offended, it’s just Jason, he has that affect on all the ladies.” Upon a second look over Jason, I would have to agree.  I took her back and then Eric popped up. We went into a new room.

The first team to show up were from Genetics. Gotta say, I didn’t see this coming. I had no idea this group would be here. These two people were the most stressful for Yaya. The man was tall with a strong Eastern Block / Russian-esque accent and the other person was an Asian woman. Could it get any worse for Yaya?

The man started asking us if we had a family history on Yaya, to which we said, “No." He persisted with, “Really? Nothing?”  My calm response, “Nope, nothing.” He continued, “You mean you don’t know her parents?” <slowly draw air in with my nose> “Sir, she was born, abandoned, and found all on the same day?” He mulled this over a second and asked, “So you don’t know when she was diagnosed then with this cleft.” (ARE YOU KIDDING ME?! SERIOUSLY?!!) “Well sir, I’m assuming they diagnosed it the day she was born when they first saw her in the hospital.” He pressed on, “So are you her parents now? Or just foster parents.” I looked at him incredulously, I mean I suppose we could be a caretaking couple for the real parents who are back to work fulltime or something. So I responded with a little more heat in my voice than I wanted, “We both went to China to get her, she is ours.” I won’t post all the other mean comments that were racing through my head at this point.

In the mean time, the sweet Asian woman was trying to get Yaya to stop screaming and make friends with her. What she didn’t know was that Yaya has an aversion to Asians currently. So the woman was getting closer and closer and well I couldn’t take it anymore. I gently said to her, “Ma’am, I don’t want you to take this personally but Yaya doesn’t like Asians currently, it began in China in a medical clinic…so really you are just upsetting her more. You  may want to move away from her.” This nice woman quickly moved away and sorta laughed, I couldn’t believe I had to say that to her but Yaya was a total wreck at this point. Then, ridiculous question man came to do his examination, which involved a little paper tape measure that he put all over her face, ears, body etc. She loved it…no wait, she went nuclear! After the torture measuring session they left and then shortly there after the actual doctor came in and was very knowledgeable about international adoption and just said she has no markers of any secondary syndrome or genetic anomaly and we would just watch her over the next 6 months to a year and to call them if we had any concerns or questions.

Next we saw the Speech therapist and it was a good meeting and they didn’t touch her. They are pleased with what we are currently doing and said to keep it up. Then we finally got to see Dr. Grant! Yay! We LOVE him. He is everything everyone says he is and more. Wonderful bedside manner and easy to talk to and like. He explained everything very clearly to us and with diagrams…wish I had thought to grab his paper he drew on. But oh well. He says we will only have two surgeries to close her lip and palate…one for the lip and one for the palate. Later when she is about 5 he will lengthen the place where her nose attaches to her lip a little to make her nose look like it should. Then when she is about in the 2nd grade they will refer us out to get the bone grafting done to form the rest of her gum line. If she is satisfied with the initial surgery on her lip he will leave it as is, if she is concerned about it cosmetically then they will do a little revision if the child wants it he said. Interesting. So we are on the books for her first surgery to close her upper lip on Sept. 5. I can’t believe it. It is hard to think about losing this precious face that I have fallen in love with. It’s weird but I am not alone in this weird conflicting feeling, we hear that most families have this feeling.

So now I am gonna have to get some professional family pictures set up soon! We also are on a new hard core approach to getting her eating. Dr. Grant was not as upset about her not eating as the IAC but he did say if she was eating baby food that would be easier for her in recovery. Plus, his thought was if we can get her eating before surgery it won’t be foreign to her after surgery. So please pray for her. We also were concerned about the arm restraints only because her one soothing posture is her left thumb in her mouth to fall asleep. He was very laid back about the restraints and said that there really wasn’t any clinical evidence of increased damage done if the older children did not have the restraints. So if Yaya rolls with them then fine, if not, then take them off and just monitor her. So that was a relief to us. The recovery time for the lip revision is like 2 days on Tylenol then she is fine. The recovery time for the palate is longer…he said she would be miserable for about 2 weeks. Yuck.

The ENT popped in and checked her ears. Definitely fluid and wax but no infection. Tubes in the same day we do lip revision. Then we saw the schedulers for both the ENT and Dr. Grant and we were done. Whew. Big day! She slept through the night without waking, praise the Lord. But she is very clingy and yet distant today. High maintenance for sure, as is her sister Eden. I just need a whistle and a black and white striped shirt and we’d be good to go.

4 comments:

  1. So glad the appointments went well! (Aside from the crazy questions from the one doc. Yikes! :) )Will say some extra prayers that your sweet girl is able to learn to tolerate baby food in the coming weeks leading up to surgery. Thank you so much for sharing her story. It is such a blessing to us! Oh and Happy Birthday! Hope you are feeling better!
    Maria

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    1. Maria! Thanks so much for the encouragement and well wishes! How can I contact you? through you blog or do you have an email? My email is angwmson@gmail.com

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    2. Hi Angie! I will email you! :)
      Maria

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  2. Oh, mercy! That is quite the appointment. Glad you feel so comfortable with your surgeon. That is huge. And yes, it is tough to say goodbye to that cleft lip prior to revision. It was hard for me to see her for the first time following her first stage lip repair. I hope she continues to improve with her eating. She's a beauty!

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