Our Chinese Butterflies

Our Chinese Butterflies

Fristoe family

Fristoe family
Our family waiting on Prudence and ?????!

Friday, June 29, 2012

The Cleft Palate Clinic

I woke up bright an early so I could take Clara to her appointment.  I have really been looking forward to this appointment.  I feel it will be my first really positive one, like we are finally going to make some progress.  I get ready and wake Clara up, which is never a smart thing to do.  I did it once in Ghonghua and it was not fun.  I had just planned on putting her in the car and dressing her in the parking lot, but she was apparently very well hydrated and needed to be cleaned up.  So, to start the morning she wasn't very happy.   We finally head out the door.  Thankful traffic wasn't bad and we made it in the hour I had allotted.

We didn't have to wait long to be called in.  Dr. Singhal was the first to come and see us and he was so happy we finally had her home.  I had asked him last November if he would care for Clara and he had agreed to and said he would put her tentatively on the schedule for July of 2012, so she wouldn't get here and have to wait a long time for surgery.  Dr. Singhal is wonderful and has a long, long waiting list.  We only got him after we had a terrible incounter with another one of the plastic surgerons and I refused to go back to him.  He talked with Clara and played with her.  He said her surgery was scheduled for August 7th and they had already scheduled all of her preop appointments and gave me those dates.  He said it is usually an overnight stay, but after the cardiac cath incident, she would spend aleast one night in the picu and 1-2 on the floor.  He then said he was happy I had gotten her home and thankful I asked him to do the repair.  He is such a wonderful man!!!!!!!

We then went for a hearing test.  She did well on the left but lost it when it came to the right.  She has very little moment of her eardrum on both sides, but the right is worse.  The ENT cleaned her ears with a microscope and they retested her.  Still didn't due well on the right, but she has an appointment on July 18th to see the ENT and they will start with the right ear and see what happens.   We then saw another nutritionist and she gave us instructions on how to help her gain some weight before all of these surgeries.  She said from the other nutritionist's notes she saw where she did not agree with weight gain.  The new one said she probably wouldn't agree with it, if she wasn't having two huge surgeries in the next 3 months.  So, hopefully Clara will gain a few pounds before her open heart surgery, which should be in October.

We saw a occupational therapist, social worker, and speech therapist.  We are now waiting to hear when her therapies will start!!!  What a busy, busy little girl. :)   We are also scheduled to see a dentist on July 19th to see if she needs any teeth pulled, before open heart, but during the cleft repair.  Dr.  Singhal plans to do a complete repair in one surgery.  He said it has been open too long and she needs to get talking.  I agree she needs to talk, but I am not always sure I want to know what she is thinking.

I bought an external hard drive so I could transfer my pictures off of my PC.  My memory is almost full and I can't download any of my pictures from China.  That is my goal for the day.  I have a lot to tell you about my trip to China, some good and some bad.

Here is what the girls were up to yesterday while I was folding clothes.

God is good!!!!



  1. love hearing you have such a great surgeon for that sweet pea :)

  2. They are a blessing...
    My son who is now 11 was also born with a cleft lip and palate..He has gone trough many surgeries..and everday is a huge challenge...
    God blesses those who can handle his butterflies...

  3. how very beautiful xxxloving every minute xxx

  4. also wanted to say hugs for all the therapies, appointments, bad and good doctors, waiting in waiting rooms and such like! believe me i know what that's like!!

    hoping you get surgery soon and cant wait to hear and see more about china xxx