Never underestimate....

.....what God will do to show you he is present in a situation. 

While we were at the hospital iin Chapel Hill last week, we met the family in the room next to us.  As it turns out, the little boy was adopted from China and had cleft lip and palate just like Toby Ann.  As it turns out, he had the same surgeon as Toby Ann.  As it turns out, he was from her same province in China.  As it turns out, he was from her same CWI (orphanage) and they had the same guide we had when we traveled.  You may not understand how big this is.  Toby Ann is from Urumqi in the XinJiang province.  the year that she was adopted, there were only 38 adoptions in the province (which is not many).  There are 2 other orphanages besides hers in the province which contributed to that number.  Some of those kids came to the US, but some went home to other countries.  Her China friend was just a year older than her and came home to North Carolina a few months after her, so they would have likely played together in Urumqi.  The probability of the two of them being in the same hospital with the same surgeon on the same day is staggering.  This is the first time we have met a family with a child from Urumqi in person.  It was an extra special blessing that only God could have arranged. 

The two of them were so cute when they realized that they were together in China. 

God is so good to give us these little blessings when we need them the most.  :)

Pictures from the hospital

Arriving at UNC Children's Hospital.  She had her ipod all plugged in and she was listening to SCC sing Declaration of Dependence and dancing around.  She takes the whole surgery thing in a very matter of fact way. 

hanging out in the waiting room.  She read me the book "Ruby Paints a Picture"  while we waited.   She read every word from start to finish.

dressed for surgery...still a happy girl.

Always a happy face. 

The nurses gave her a sticker book and stickers...Kai Lan....her favorite.

Now happy and a little loopy...after the meds to make her more relaxed. 

here we are, ready to go back to surgery

silly girl...

I am so happy that I get to go back with her until she is asleep.  Some hospitals don't allow that.  It sure makes things so much easier since she struggles with some seperation anxiety. 

after surgery and back in the CSSU and all hooked up to monitors and stuff.  There sure are a lot of things to un-hook or take with you when you need to potty. 

having lunch the next day.....yummy pureed corn, mashed potatoes, and pureed pork roast...she ate some of the potatoes and a bite or two of corn. 

dressed and ready to go home.  yay!

She did well

Toby Ann did really well today. She is such a trooper. No complaints even though she couldn't eat today and her surgery was in the afternoon. No complaints that she couldn't drink, even though she was thirsty for sure. No complaints even though she knew she was going in for surgery and would come out in pain......after all, she's done this a bunch of times before and she knew what she was in for. So, basically she did what no grown-up could do. She simple didn't complain.

Now she is sleeping in her bed. She's been throwing up....part of the experience for her I guess. She was just past the throwing up and was just feeling the effects of the meds they gave her for that when she asked me about the "bed" I would be sleeping on. She took one look at it and knew that it wouldn't be comfy. So despite everything, she chose to be worried about me. She said, "why do you have to sleep there? I can share my bed with you. It's softer. I can move way over and make room." if we could all love like her and care like her, the world would be so different. She blows me away everyday and I learn from her constantly what it is to love truly and deeply and without condition.

Surgery went well, but we won't know the entirety of the results for a while, so please keep praying for the best of both worlds....no apnea and good speech.

Praising God tonight for his mercy and his grace and his amazing gift of prayer and of course for this amazing little gift snoozing beside me.

Surgery Update

Toby Ann is supposed to arrive at the hospital in Chapel Hill at noon Tuesday, June 7.  I'm guessing that means her surgery will be around 1:30ish. 

Surgery tomorrow ......June 7

Toby Ann and I will be checking in at the UNC Children's hospital sometime tomorrow for Toby Ann's next surgery.  She will be having a division of the pharyngeal flap (p-flap).  Toby Ann origianally had p-flap surgery in February, 2010.  P-flap surgery involves grafting tissue from the back of the throat to create a flap at the back of the palate behind the uvula.  The purpose of the p-flap surgery was to improve speech.  Without the flap, Toby Ann did not have the ability to produce certain sounds in speech, for example the "g" sound (like in the word girl) and the "k" sound.  After her surgery, Toby Ann had amazing improvement in her speech.  She found new confidence socially because she could now be better understood by her peers.  Before the surgery, she would never sing because she struggled with speech.  Now she sings. 

Now on to the present situation.  Toby Ann's surgery tomorrow will remove the p-flap.  Sadly, this could un-do the improvements in speech.  Without the flap, she will no longer have the oral mechanics to make the sounds that she gained.  Now you are asking why are we having a surgery that could potentially un-do progress that we went to great lengths to make.

The fact is, as with anything that has the potential for amazing gain, there was a risk.  The risk for apnea.  Now Toby Ann has sleep apnea.  The flap is only a part of the problem.  The reason that the flap caused apnea has to do with Toby Ann's nasal airways.  We now know that on the cleft side she has no nasal airway;  on the other side, her nasal airway is very tiny.  So, to make a long story short, the added tissue at the back of her palate would have been fine if she didn't have the other issues, but together, they result in apnea.  We were hopeful that her huge tonsils were the issue, but after getting her tonsils out 4 months ago, she is still struggling with apnea.   While the decision to potentially un-do progress in speech was heartbreaking, breathing has to come first....obviously. 

So, tomorrow, her amazing, wonderful platic surgeon will go in and revise her flap.  He is going to do everything he can to do it in a way to help maintain her speech improvements.  He will be doing another nasal endoscopy to see how things are now and making a decision on how much of the flap to take down.  The origional plan was division of the flap (which is actually removal), but there is a slight possibility that he will be able to leave some of it.  It will all depend on what the scope tells him. 

Another concern about the surgery is pain.  This type of surgery is pretty painful.  Toby Ann is not one to complain, which is good and bad.  Sometimes she suffers needlessly.  Also, she has had trouble with the pain meds the last couple of times, so she may have to stay in the hospital 2 nights rather than just one, for pain management. 

Other concerns have to do with family.  Since we have a lot of kids, we have to divide and conquer....so I will be going with Toby Ann to the hospital while Morgan holds down the fort.  Morgan is an amazing father and he handles this very well, but doing it alone can be tough when you are used to a partnership.  I have taken Toby Ann for a bunch of surgeries alone, so I know I can handle that....but it's tough to care for her, stay by her side while trying to find a way to keep myself fed.  When she is hurting she doesn't want me to leave her side, so just going to the bathroom can be a challenge.....going out of the room long enough to get some food is really tough.  After the surgery, the recovery will be painful, we know.  Also, Toby Ann will have major restrictions on her diet for a few weeks (applesauce consistency pureed diet for 2-3 weeks and then soft foods for another week or two after that).

So, all of that being said, we need some prayers.  If you could pray for these things, we would appreciate it so much:
1.  safe travel to and from Chapel Hill
2. safe and successful surgery for Toby Ann
3. wisdom for her doctors and caregivers to make the right decisions
4. good results from the surgery (an end to the apnea while maintaining her current level of speech)
5. quick recovery/good pain management post-op
6. smooth sailing at home while I am away
7. me finding a way to eat and take care of some very basic needs for myself while caring for Toby Ann in the hospital
8. patience with the food restrictions

Thanks so much for your support and prayers during this time.  I will be updating the blog while we are at the hospital and of course, updates on facebook for those who are connected with me there. 

Headed back to Chapel Hill......again!

Tomorrow we will be going down that road to Chapel Hill again.  This time it is for a pre-op appointment for surgery that Toby Ann will have next week (June 7). 

This will be surgery #4 in the last 16 months. 

I'll be posting the particulars in the next few days, so stay tuned.