Thursday, September 12, 2013

Doctor Appointments

Yesterday was a very long day for Ellie, Christopher, and me. 

 I took Christopher to an appointment at Shriner's hospital in Philadelphia.  It's a hospital that specializes in pediatric orthopedics, and it has been recommended to us by many other people who have limb differences or kids with limb differences.

After having the plastic surgeon recommend surgery last month to close the clefts on Christopher's feet, we met with a geneticist.  The appointment was to determine if Christopher's ectrodactyly is part of a syndrome, and whether or not we need to be concerned about any other health issues.  While we were there, I mentioned his upcoming surgery in passing.  The geneticist seemed surprised that our plastic surgeon had recommended this surgery without having any x-rays or bloodwork (and we had already had our pre-op).

This made me think twice about this surgery.  In fact, I had already wondered whether or not we should do a surgery that might affect Chris' feet's functioning, just for the sake of appearances.  And, also just in case he has issues with shoes one day.  Some people do not.

I was very glad we had made an appointment for a second opinion with an orthopedic surgeon at Shriner's.

(The kids had a lot of fun in the exam room while waiting for the doctor).

The surgeon said right away "don't do anything to his feet."  When I mentioned what our plastic surgeon had recommended, he said "only a plastic surgeon would recommend that."
(A bit of professional rivalry, eh?)

Then, he also told me what he could do for Christopher's hands.  He could separate the fingers on his left hand, and remove the one extraneous (non-functioning) finger in one surgery, instead of the 2 surgeries the plastic surgeon had mentioned.  He also had suggestions for making his thumb more opposable and therefore more functional.

I think we will be going with Shriner's.  Both on an intellectual and on a gut level, I feel like this is the right option: fewer surgeries, and only working on what is truly necessary. If we think there is a problem with his feet, we can always do the surgery on them later.

 I know it would be easier, in some respects, to do the surgery on his feet while he is younger.  People keep mentioning, for instance, that he will not remember the surgery if we do it while he is younger.  I am not entirely sure why this is important (even if kids don't remember something painful, it is still something that happened to them that forever affects them, right?  Just like issues surrounding adoption and orphan care?  Am I missing something?) But, I still think I am not confident enough that the surgery is warranted and I would rather wait than regret.

The Shriner's surgeon recommended waiting to do the hand surgery until Christopher is walking so he won't be crawling around on the very hand that is being operated on.  He guessed that about 3 months from now would be right.  (Right around the time Nicholas might be having his surgery.  That will be interesting!)

After three hours at Shriner's, we then went to Ellie's annual cleft lip and palate clinic day.  Once per year, Ellie sees a team of doctors/specialists who help her with her clefts, including a plastic surgeon (yes, the plastic surgeon who suggested the foot surgery), an ENT, audiologist, speech pathologist, pediatrician, a social worker, and a dental team.

It is a 4-5 hour affair.  But at least the kids had fun in the waiting room!

Ellie is doing really well in every area.  Hooray! Her greatest struggle is her speech articulation.  But since she is working on it very diligently -- she sees a therapist twice per week -- and has made great strides, the team was not worried.

She does not need ear tubes or another surgery in the near future.  Knock wood.

Although it was a long day seeing many doctors, it was actually easier for me than a usual day at home while homeschooling.  We started school officially on Monday, and I am just exhausted from it!.  I am going non-stop all day.  

I am sure it will get better as we get into our routine, but I am just spinning lately: my adrenaline pumping and a little on-edge.  We have a new babysitter, a new Chinese tutor, a new homeschool co-op, and a new OT starting with Christopher soon.  I am not good with beginnings.

So, a day with only 2 kids at the doctors' offices was like a vacation.  Oh, how sad.

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