Sunday, January 26, 2014

Five years

Miss Sunshine turns five years old next week.  I can't believe she is FIVE already.  This also means that we just passed the four year mark on her palate repair surgery.  Four years since the longest, scariest day of my life.

I know that we are incredibly blessed in so many ways.  For one, we had the amazing fortune to be referred to Shriner's Hospitals for this surgery.  Two, we live in a country where healthcare is (in general) available, so she had the opportunity for the surgery even if Shriner's hadn't taken her on as a patient.  Three, she is an amazingly resilient child who came through surgery with flying colors.  Four, her first surgical repair was a success and she has not needed subsequent surgeries.  Five, she is a healthy child, so we did not face other issues post-repair.  The list goes on and on and on. 

I say all this, not to brag, but to point out all the potentials for problems that could have happened along the way.  I have friends in the cleft community whose children are on palate repair five or six.  There are multiple reasons repairs can fail, and sometimes (much like the occurrence of cleft itself) it just happens, and they don't know why.  There can be other health issues, such as autism, sensory disorders, learning disorders, and so on. 

This is not to say we have not faced our share of problems.  Had Shriner's not accepted Miss Sunshine, for example, our insurance did not cover a cleft team.  We would have had to contact each needed specialist individually, and had multiple out of pocket costs for such visits.  Our bill would have been in the tens of thousands by the time all was said and done, between copays, deductibles and out of pocket maxes.  Miss Sunshine STILL struggles with her ears (in fact, we are headed back to the ENT soon), and does have hearing loss in one ear, which has progressed with each visit to the ENT.  While we are still hopeful that it may be related to that impact tube and not permanent, there is always the likely possibility that it is permanent, and that it may continue to progress.  Miss Sunshine spent three years in speech therapy.  There is still the possibility that she may require more therapy, as she does still have some negative speech habits and difficulties with pronouncing certain letters and sounds (for example, she loses a lot of air when saying the SH sound - a common problem in cleft children.  It does not make her speech unrecognizable at this point, and since she really doesn't have vasopharangeal insufficiency in other speech patterns, not something that would need to be surgically corrected at this time).  She does have some texture issues, which I believe to be residual from having baby food go up her nose.  She will not eat anything that resembles baby food except apple sauce and yogurt.  Mashed potatoes, or anything soft or pureed, will not pass the child's lips without a major fight.  She is a terribly picky eater, and we have a hard time getting her to try new foods. She is still underweight for her age (though no longer failure to thrive!), and will likely always be that way - a residual of her struggle to gain weight in the first year of life due to her cleft.

But as I look back over the last five years, over the struggles and the successes, all I can do is be thankful.  Thankful for the experiences we have had that have made us stronger as a family.  Thankful for the opportunity to get the word out about cleft, about how it affects us in the real world.  Thankful that people want to hear and listen.  Thankful for the amazing support we have found within the cleft community. Thankful for our beautiful, amazing, perfect daughter.