Hi Ho, Hi Ho, it's off to Children's we go!

 Here we go kids!  And just in time!!!

This sweet girl has been learning more and more about herself and discovering new things everyday.  In the last two weeks, she has taken full notice of her right hand and how it is different.  She came up to me one day several weeks ago with her serious face (pictured) and began talking to me in her most concerned, serious voice.  She was pointing to her right hand and telling me all about it...though I have now idea what she was saying.  As she continued to talk and point, she began to try to manually separate her two fingers that remain joined together.  She wanted me to know that she knows they don't belong together and that she knows the fingers should be just like the fingers on her left hand.  She has since done this close to ten times now and sometimes, all I can do is hold her little hand and give it kisses because I cannot make it normal like her other hand.  Even with surgery, her hand will never be normal.  But what I can do is take her to a hand specialist who will work to make that hand as normal as possible.  In fact, we received notice about a week ago that a consultation has been scheduled with that very special doctor for next week.  Perfect timing since she now knows her hand is different and wishes it to be the same as her left.  

A little background:  Mei (pronounced May) was born with a condition called syndactyly (Greek for together finger) or webbed fingers.  Three of her five fingers were fused at birth and her index finger was surgically separated while in China.  Her middle and ring finger are still fused in what seems to be a more complex syndactyly because it is not just soft tissue fused...possibly the most complex form of syndactyly known as complicated syndactyly because the bones are abnormally shaped.  If it was a simple syndactyly, they probably would have already separated them.  Because there is no skin between the two fingers, another skin graft is eminent...but maybe this one won't be as large as the one done in China.  As for what caused her syndactyly, we don't know at this point.  She has had blood drawn for genetics testing to see if she has any unknown syndromes or genetic issues.  We don't have those results yet, but her syndactyly could be caused by something as simple as amniotic band syndrome where a band gets wrapped around the fingers after they are fully developed in the womb which causes them to grow together.  I guess we will find out more next week.

We are glad the hand appointment has been scheduled, but the appointment we have really been waiting on is with the cleft specialist/team since her palate is still open.  We currently have more issues from the open palate rather than the fused fingers.  On Monday evening, I received a call from the cleft specialist's secretary stating they noticed Mei's appointment with the hand specialist next week and wanted to work us in on the same day.  Wahoo!  Now we only have to make one trip to the children's hospital (almost an hour drive for us) for three full evaluations all on one day.  She will have a full speech evaluation first (hello language barrier...that's going to go well!) followed by an evaluation with the cleft team, then on to the hand specialist.  It is going to be a long morning for all of us as her first appointment is at 8:00am.  We have to leave early enough to get there on time with the hour commute and rush hour traffic so some of us will be waking in the five o'clock hour to leave by 6:30 in case there are any accidents or gridlock traffic slowing us down.  And some of us (who shall remain nameless) are not morning people!!!  

This is what her cleft palate looks like currently

So what's next? All of these appointments will tell us how fast we will be checking in to the hospital for surgery.  The most pressing surgery is of the two holes in her palate as these holes cause many problems.  Often, there is food impacted in them and sometimes food or liquid will come out of her nose.  Hard foods are difficult to eat and some foods she cannot eat (like nuts) because they could become lodged.  She can only drink from certain types of cups that have been manually manipulated as she cannot suck from sippy cups or straws.  These holes also delay her speech greatly and we have a long road to her being able to speak properly.  The sooner we have her palate repaired, the sooner we can begin speech therapy and get her on the right road to great speech so mom and dad can understand what she is saying.  We need and covet any and all prayer as we have a long road to a fully healed child.  Please agree with us for good reports.  Also, we would like to have both hand and cleft surgery together in the same hospital stay if possible. One hospital trip, one hospital stay, one recovery period for two surgeries....and a smaller bill in the end.  Please pray for patience and divine healing, rapid recovery, and a means to cover what insurance will not.  This should be fun!!!