Saturday, 28 July 2012

Cleft Team half day assessment~ Sara

On Tuesday, Steph and I took Li Lin downtown to the children's hospital in our area for her 3yr check-up/first meeting with the cleft team.  She was scheduled for a  half day assessment which was four appointments spaced an hour apart with an hour's break for us to get lunch.  The night before the appointments I told Li Lin in mandarin that we were going to a kids' hospital so the doctor could look at her mouth, teeth, and ears.  She nodded and agreed to go after I gave her confirmation that no needles were going to be put into use.

On the way to the hospital, Li Lin told us she was scared.  We told her we would each hold her hands during the appointment and she smiled and said, "hao" (good).  Appointment #1, at 9am, was with the dentist.  She was pleased to say "no cavities", and although there is significant discolouration on the tooth closest to her fistula she felt it did not warrant any attention as it was causing Li Lin no discomfort.  As soon as she left her chair, the orthodontist gave her mouth a once-over.  He, as expected, had no immediate plans, but did tell us she will need lots of ortho work down the road.

Upon leaving the dental chair, with her chart in hand, we headed to the Speech Pathology department.  Li Lin was difficult to assess as her English is very poor still, and she was more interested in the toys than she was in the SLP (Speech Language Pathologist).  I have no doubts this SLP will remember our appointment for a long time.   Li Lin at one point, asked that we pray, and wouldn't proceed with the appointment until we did! LOL!  She was playing with imaginary food and wanted us to give thanks for it.  Thankfully, the SLP was a good sport and didn't mind.  She is impressed with how well Li Lin spoke given the size of her cleft fistula.  Fistulas (or holes which should not normally be there) usually cause more problems with speech if they are at the back of the mouth.  Li Lin's is at the front, but it is very big.  We will be referred to a local speech therapist in our area.

Our next appointment was with the audiologist.  Several hearing tests were performed in cool sound-proof rooms.  In the end we were told her hearing was normal.  We had already figured as much, but the confirmation was good.

We took our lunch break next, then headed to our 1pm appointment with the plastic surgeon.  We were anxious to find out when she would be having her surgery to repair her fistula.  We waited a mind-numbing ninety minutes before we were ushered into a room.  A couple minutes later the door opened and to our disappointment it was not the Dr.  It was the nurse coordinator coming to do MRSA swabs.  Since she came from another country this is protocol.  I won't go into details of MRSA swabbing, if you are a medical professional you can sympathize with me trying to explain this in broken Chinese to a three year old.  Another half hour later the plastics fellow showed up and chatted with us for 20 minutes or so.  At one point, the attending (her boss and mentor), showed up and needed her.  Another forty five minutes or more later, they came in again.  The news was not as expected.  They do not want to do any surgery until she is between the ages of seven to nine.  At that point they will do a bone graft with bone from her hip, to bring her gum lines together and make place for the teeth to come in.  They will fix the fistula then, while at the same time do a revision on her lip.
So my little girl will go to school with a large fistula in her mouth for at least four years...hmm.  Her nose job will not be done until she is 17 or 18 and is fully grown.  So there you have it.  We walked out of the appointment at 4:30pm with Li Lin asleep in my arms and very thankful we were only scheduled for the half day assessment.


  1. I know that many surgeons do the bone grafts and fistulas at age 5 or 6, but our surgeon has also suggested waiting until Zoe is 8 or 9 before we do her bone graft. We do trust that he knows best, he is a great surgeon. I am sure they would do the nose sooner if you asked and said that it bothers her, but who knows, everyone is different.

    Speech thereapy is exhausting, we have been going to the Cleft Palate Clinic at the U of A to see the Speech Pathologist there because I found the Community therapists had no idea how to deal with a cleft child. Now that she has been doing that for a year, we will be doing it through the school in the Fall, Yeah!

  2. Paige has given you great advise here as she has been through this all before - plus her husband is a surgeon! I don't have any experience at all in this department, but know a few children that had their surgery as soon as they came home from China @ around age 2 or 3 I'm surprised that they wait so long...? However, I imagine they know what they are doing. :)

    My dear, I did laugh at her wanting you to give thanks for the imaginary food during the SLP appointment. That is too sweet! What an incredible girl!


  3. Yes, she is an incredible girl ans she is very blessed to have incredible parents. What a long day. But all is well that ends well. Nice to have feedback from Paige and the Meaklims. Will continue praying that the best be done for LiLin who is already growing up so cherished. Mom xoxoxox

  4. I just love that she wanted you to give thanks for the "food" during her appointment. Too cute!! I'm sure you must have all been totally exhausted by the end of the day! Wow!! I'm sure you have mixed feelings about some of the things you were told...will continue to pray for sure. Love you! Pam xo