Saturday, January 5, 2013

On the third day of Christmas this year I got the best gift imaginable: Miss Sarah laughed.

Sarah is fifteen months old.  It is still fun to watch her learn.  Remember the first time your baby smiled, and everyone told you it was just gas because he was only three days old?  I have been looking at that smile for just over a year.  Nothing will convince me that our sweet little ones do not express involuntary joy in the form of a smile, even when they are just born.  But later, when it is inarguable.  When they laugh.  Their delight is so beautiful it is contagious and you laugh right along with them.

Yes, darling, you are right.  Peek-a-boo is the funniest thing in the world.  Daddy is gone and then he appears!  The world is full of magic.

Sarah laughed when her Daddy was playing peek-a-boo.  He hid his face in her belly and then popped up where she could see him.  Her face pulled into one of her rare smiles and a giggle popped out.  Was it a giggle?  Do it again.  It was a giggle!  And then a belly laugh!  Sarah was laughing!

Since then we have made two discoveries.  Mom is not as funny, even when she does the same thing.  Dad has other clever tricks which are all funny.

We are finally on a regular therapy schedule.  It took six months, but it is happening.  We are seeing progress.  Sarah is getting stronger.  Her upper back and neck muscles are not as strong as they should be.  She cannot lift her head.  Her head is bigger and the muscles are not as well developed.  Usually, babies start with tummy time in the early months.  They begin to lift and turn their heads and then they learn to push up on their hands.

Sarah spent those months in the hospital.  Then home from the hospital when I would put her on her tummy she would scream.  I could not tell if it was fear or pain.  I asked everyone.  Is she in pain?  There is no apparent anatomical reason for her to be in pain.  She probably just hates it because it is unfamiliar.  I kept asking.  What can I do?  All the usual advice for tummy time haters did not help.  She did not care if I was on my belly too and talking to her.  She did not calm down when I massaged her back and legs or sang to her.  Finally on one of our unscheduled hospital stays I met with a therapist who said that she might be in pain.  She worked with kids of all ages, and she said that though most kids with a Mickey button (that is the button in her belly where we attach Sarah's feeding tube) express mild or no discomfort.  Some find it intolerable.  She showed me a few tummy positions which got the pressure off her button, and, lo and behold, she was soothable.  She was not happy, mind you.  But she would settle down.  So at about a year Sarah began to develop the muscles which would need to be stronger than most kids need, but were in fact weaker.

We also got an adaptive chair for her from an equipment exchange.  She likes her chair, and I like seeing her sit up!  Again, the muscles that she needs are not as well developed as they should be, so she can only tolerate sitting up for about half an hour, but that is half an hour she did not have before!  And she is getting stronger.

We have big things planned in her future, both medically and developmentally.

Sarah will get her surgeries on January fourteenth.  Please pray she stay healthy for this important surgery!  I feel a little bad not taking Lily outside to enjoy the cold winter air, but it is so discouraging how many times Sarah has gotten sick.  I don't want to take her to the mall or for walks outside.  I mean, I do, but I won't.   I like the sensory stimulation of seeing other places than her house.  Riding in a stroller, looking at strange and interesting things, smelling new smells... It all seems good.  But at this point, it is a risk I will not take.  When Josh is not working, he takes Lily out and about.  Sarah stays in.  No play dates.  No mall trips.  No walks in the cold outside air.  I think the outside could do her some good, but I am too scared.  It is in the low thirties and she can wait two weeks.

This is the same surgery that has been scheduled before.  It is the first of three hand surgeries- this one will separate her thumb and pinky.  Her cleft palate will be repaired and she will get tubes in her ears.  I cannot express how excited we are for her for this surgery!

Our to-do list grew extensively over the holidays.

Her last serious illness was very discouraging.  We had to cancel the surgery, which was already delayed past the recommended timeline.  We had spent another few days in the hospital because she was not breathing well.  We were given a maintenance inhaler, which is great on the one hand because it should help her to keep minor colds from turning into major events.  It is great, objectively.  But it is one more thing to remember every day twice a day.  And we have to face the reality that this has not been a series of terrible illnesses; Sarah has something chronic going on.

Every time we go to the hospital in respiratory distress, they do the same thing.  Oxygen.  Albuterol.  IV in, then steroids and fluids through the IV.  No food until her breathing is under control.  Lung X-ray.  And, every time the X-ray has shown cloudiness in her right lower lung.  And, every time, this cloudiness is diagnosed as pneumonia and treated as pneumonia.  So, a course of antibiotics.  Once we went and she had not finished her last course yet, so they put her on a second course of different antibiotics.  This fall some doctor had the good sense to compare the X-rays.  They all look the same.  Whatever is going on, it is not changing.  She did not have a suggestion as to what that means, except that it is not pneumonia and whatever it is, it is chronic.  We have to get her to a pulmonologist.  

Also, her therapist is recommending all kinds of equipment to help her development.  Equipment is not simple.  You have to get measured and approved.  Then there is some question of who will pay for it.  Our insurance has not balked yet, but it has been strongly recommended to us that we get secondary coverage.  So, we are looking into Social Security and Medicaid.  We don't really know how these programs work.  Everyone we talk to refers us to someone else who does not seem to know either.  We have hit a few brick walls.  We have now been told three or four times that we absolutely will not qualify because we have insurance and a reasonable paycheck.  We have also been told that we absolutely will qualify because of Sarah's needs.  Status quo: we do not know what to apply for or where to apply.  Best advice so far: "Move back to Maryland.  It is very hard to get covered in Virginia."

The to do list:
  • Surgery & pre-op consults, including a CT to get clearance from neurosurgery.
  • Pulmonology
  • Equiment: adaptive stroller, stander, batch chair and possibly adaptive car seat
  • Secondary coverage for medical bills and equipment
That is what we get for taking a month off.  We decided after the surgery was cancelled that we were going to enjoy our holidays like normal people.  We were going to go visit family.  We were going to decorate the house.  We were going to shop.  We made a gingerbread house and cookies and fudge.  We made caramel popcorn. We stayed in and snuggled and watched movies.  Although we took phone calls and answered any questions asked, we took a break from what had begun to feel like a treadmill of medicine.  I feel a little guilty, but I also feel able.  Able matters.  Sometimes Sarah's medical needs are our whole life, and for a month we lived a normal life.  

And what detracts from the guilt?  Sarah laughed.  For the first time.  She laughed!  I know that we need to do all the things we need to do.  We will.  I know that part of the reason we were able to take a month off is that Sarah stayed well enough to avoid the ER for a month.  I know, I know, I know.  But I also know that laughter is more important than anything the doctors can do.

A joyful heart is the health of the body,
but a depressed spirit dries up the bones." Proverbs 17:22

1 comment:

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