Happy Birthday Grandpa Durand!

Another week down for the German household.  Dani missed her weekly chiropractor appointment because of the weather.  On Wednesday, she had an appointment with her GI doctor.  Surprisingly, she is down in weight.  I say surprisingly because she still makes my biceps shake when I have to carry her.  She is down over 4 pounds!  Now, she is no longer at the threshold to get the Baclofen pump surgery.  Dr. Doubledee has upped her feeding in order make up for her loss.  This has proven to be tricky because within the last couple of weeks, Dani has started to throw up feedings again.  She did this 2 years ago and threw up for over a year.  Towards the end it was every feeding she would throw up.  She lost a lot of weight during this time.  Many, many expensive tests were ran to try to figure out why she was throwing up, everything always came back normal.  Then one day, she stopped throwing up.  Just like that.  This seems a lot like last time.  She will even wake up crying at about 3 AM, we vent her feeding tube and so many burps come out.  She has been on this formula for close to 2 years, but it is like her body is rejecting it.  Just like the last formula.  So, we will see how Dani behaves the next couple of weeks…

Kaylee and Brianna are doing great in school.  Kaylee made the B Honor roll and Beans made the A Honor roll.  They both go to weekly therapy sessions to help deal with everything that goes on with Dani.  My greatest fear is that they will one day resent Dani because she requires so much of our attention.

January 23, 2010

Dear Dani ~

It is hard to believe today is your 4 year anniversary for your brain injury.  Due to the severity of your brain injury, you were given at most 3 months to live.  You sure showed them that they were wrong!  4 years, it has been a wild roller coaster ride, many sharp turns, ups and downs, ok, a lot of downs, but for the last two years, you have been on a “stable” coaster.  Simply cruising along, living day by day.

You came into this world with a “special ability” called Arthrogryposis.  That just meant you had contractures of the limbs.  But mentally, you were fine.  You started hitting your milestones and started thriving and moving.  You were achieving so much, that some days I really wonder how far you would have got in life.  Would have you walked?  Would have you talked?  Would you still have that same deep laugh?  For some reason, I can picture you and Abby gaining up on the Tank (Jasmin) or running away from her.  But instead, both Abby and Jasmin are pretty protective of you.  They watch with weary eyes as we give you your meds or help you during a seizure.  They don’t want anyone to hurt you.

Events of 4 years ago, still haunt me and I wish I would have did a lot of things differently for you.  At this time 4 years ago, we were all gathered around your bed.  You had tubes and wires everywhere.  It is really amazing what they can do in the medical field. (To help fix their mistakes that they did to you).  You keep on going, you keep on improving, you are my hero.  To be honest, if we switched spots, I probably would have given up long ago, but not you.  You amaze me every day.

We have met some pretty amazing people in your medical family and some not so amazing.  We have met so many different specialists that I didn’t know even existed.  You have a pediatrician, chiropractor, pharmacist, neurologist, neurosurgeon, orthopedic surgeon, pediatric surgeon, cardiologist, dentist, gastroenterologist, genetics, urologist, pulmonologist, physiatrist, ophthalmologist, sheez, is that it?  I am sure I am missing some specialty out.  In addition, you have a physical and occupational therapist.  In the past, you had a speech and vision therapist.  I can’t forget the wide array of nurses that come into the house to take care of you while Dad and I are at work.  We get to also deal with Medical Supply places, nursing companies, insurance companies and yes, collection agencies.  Ha, if the insurance companies would get their poop in a group, collection agencies would never fit in the equation at all.

By this stage in the game, if we need to add to your medical family, we can peg if that medical provider is good, by how they treat you.  Are you like me and think it’s rude for a doctor to never talk to you but about you during an exam?  But the good ones actually view you as a person.  And as for some of the nurses that we had come into our home, I am sorry for that.  Some of them take advantage of you because you can’t speak up and tell us what they are doing wrong.  They use that to their advantage.  We have had a wide array of nurses, the TV junky, the drill sergeant, or the know it all nurse.  Ah, that last one really pisses me off at times.  You see, just because they have a nursing degree, automatically they know you better than your dad or I.  Can you believe that?

Even though it is wild roller coaster ride, I am honored that you have let me be a part of your life.

I love you, Dani.

Love,

Mom