Cleft Clinic Visit

First of all, I have to say that I spoke too soon on the last post about how Chun Le sleeps all night once she actually settles down. :) About 30 minutes after that post she woke up crying/screaming and took a long time to settle down. It happened multiple times during that night and nights since then. Chun Le is having a really hard time settling into sleep as she just acts really "angry" that she is being put down to bed. Then, she will often wake up once or twice during the night with the same cry/scream and take 30 min- 1 hour to settle down again. Needless to say, we are all feeling a bit sleep deprived lately. :) At first we would hold her and/or rock her at bed and naptimes to try to settle her but realized after the first couple of days that this did not settle her down and she would keep trying to wiggle out of our grasp for 30 minutes or more if we let her. So now we just hold/cuddle her for about 5 minutes or so and then lay her down in the crib and stay right there with her as she fights off sleep for sometimes an hour of scream/crying (very few tears though) and arching her back and kicking. It is really loud at first but generally tapers off in intensity after 20 minutes or so but often she does not fall asleep and completly stop until 45 min to an hour after lying her down. So we are spending lots of time at her cribside these days and nights. :) Poor thing--it is hard to know how much of this is grief/transition related, stubborn toddler behavior not liking bedtime, jetlag, etc...this too shall pass we keep telling ourselves. :) A real blessing in this is that Rachel (who shares a room with Chun Le) sleeps right through it all!! She even falls asleep with no problems while her little sister is loud and fussy in the crib right next to her bed! Glad we have one good sleeper in the family. Isaac in the next room, who is typically not as heavy of a sleeper, has not been woke up by Chun Le either. So that is a real praise and blessing from the Lord as we work on "sleep issues" with Chun Le for as long as it takes. It is encouraging to hear from some of you other adoptive families that you have had similar experiences and that sleeping became an issue at home even though it was not while you were in China. Thanks for the encouragement that brings to know that we are not alone in this experience.

A few updates on our doctor visits. Chun Le had her appointment with our primary care pediatrician on Saturday and got started on all her immunizations. Of course that was not fun for her, but she was pretty quickly comforted when it was all over. We will be taking her in for a bunch of routine blood work given to internationally adopted kids probably sometime this week. This visit to our pediatrician allowed us then to get the necessary referrals to meet with several doctors at the cleft palate clinic at Hope Children's Hospital in Oak Lawn earlier today. What a wonderful team of doctors we got to meet there! Chun Le did really really well on this visit as doctors came in and out several times (usually 2-4 at one time as they bring residents with them). She would wave hi to them as they entered and bye as they left the room. :) For the most part she was able to just sit on our laps as they did evaluations and she was fine with that. She got a bit nervous the couple times they had to have her lie down on the table to see her cleft but she calmed down right away when she came back to us. All these reactions were so encouraging for us to see as they indicate that she seems to be attaching well with us. So here is what the doctors said: Dr. Daw, the cosmetic surgeon, would like to do her lip revision surgery in January sometime. We need to meet with a pediatric ENT to discuss the possiblity of putting in ear tubes at the time of that surgery as this is commonly done with cleft kids. So once we meet with the ENT they will be scheduling that lip surgery. Then, about 6 months post lip revision, Dr. Daw will do the surgery to close her palate. He did say that she has a very wide cleft so this will be a challenging surgery and will likely require more than one to be successful. Then, when she is around 7-8 years old they do a bone graft to close up the gap in her gumline (take a piece of hip bone to close up the gap in the upper gum line). Nearer to teen years is when he typically does surgery on the nose to give it any revision/symmetry. That is the minimum of what we have in the next 10-15 years ahead as far as surgery goes. Cleft surgeries are typcially determined based on how speech is progressing and if any fistulas (holes/openings) on the palate develop after it gets closed. So a lot of this is unknown right now. We do have a long journey ahead of surgeries for her which will not be pleasant, but we are so thankful for the medical resources that we have avaialable that will allow her one day to have good speech and less feeding issues and feel good about how she looks (once she becomes self conscious of that). Chun Le was also evaluated by a developmental pediatrican who thought she is doing well for a child who has lived in an orphanage for 22 months. The area she is most significantly behind is speech as there is not much present at all right now and we were told that she did not have too many words in China either. That very well may be cleft related as well as lack of interaction in an orphanage setting. We also saw a geneticist. Her report was very encouraging as she felt like Chun Le has an isolated cleft. What that means is that she did not feel that Chun Le has or is at risk for any of the syndromes that are sometimes associated with children who have a cleft lip or palate. She thinks it is just a case of a cleft lip and palate and no other evident special needs that go along with that. Praise God for that good news!

So that is how our last few days have gone and why we have not been blogging or on email much. Overall, her transition is coming along about as we had expected and even better. Rachel is really enjoying being a big sister and Isaac is a bit slower to be as excited about our new addition. :) He is such a high energy kid who enjoys lots of physical play and Chun Le prefers to sit back and observe for now so they are on opposite side of the spectrum right now. At times I feel the tension of knowing how best to parent three kids who each have some very important needs right now and require lots of attention during this transition time. It is a bit of a balancing act! We are so thankful for friends and family who have come alongside us to bring meals and spend time with our big kids so that they get some extra special attention and it gives us time to get Chun Le to all her appointments and give her one on one time as well. I think she is sensing the difference of us having three kids instead of just her like it was in China. We appreciate continued prayer on our behalf.