The house is eerily quiet this morning.  My mom flew in from California on Friday afternoon and flew back with Ethan and Abigail yesterday.  I’m not used to so much quiet in this house! 

I will admit, I am getting very anxious about this trip to the NIH to meet with Dr. Sidransky and her team.  Our flight leaves in about 24 hours or so.

There are 14 different scheduled procedures for Hannah for the 4 days we will be there.  There are only two that really, really worry me — the brain MRI and the BAER study.  Both of these require Hannah to be sedated.  I know they know what they are doing, but with her vocal cord paralysis and breathing issues, this just makes it more dangerous. 

Argh….

Pam, Hannah’s physical therapist, put together a PT evaluation for Dr. Sidransky and her team at the NIH.  

Hannah Ostrea was seen for the initial Physical Therapy evaluation on May 06, 2009 here at the Texas Children’s Hospital HealthCenter Initially, Hannah was able to roll supine –> prone with SBA (stand by assist).  She was able to roll prone –> supine with min. assistance x 1. She was dependent on her caregiver to move in and out of the sitting position.  She was dependent on her caregiver to move in and out of the stance position.  She demonstrated Poor static sitting balance with a wide base of support.   She was reluctant to weight bear through the upper extremities while in the sitting position.  She required maximum support in the stance position.

     Hannah has made significant progress since starting PT.  Presently, she demonstrates Good dynamic sitting balance.  She demonstrates lateral balance reactions when in the sitting position.  She tolerates the quadruped position with min. assistance x 1. She is able to move sit to stand with CGA (contact guard assist) after correction of her foot placement.  Hannah wears Surestep SMO’s due to bilateral pronation of the forefoot.  She is now able to stand using upper extremity support without resting her upper body on a nearby stationary object.   She will take steps with HHA of 2. 

The most recent short-term goals for Hannah is for her to crawl reciprocally, pull to stand and walk with a weighted push toy.

I have been soul searching and trying to figure out why this probably tracheostomy need is eating at me.  After talking to a couple of friends and reading thoughts from other moms who have gone through this, I know what it is.

Denial is a beautiful thing.  I remember at the Texas Parent 2 Parent conference’s grief session, the woman running the session commented how being able to be in denial at times just makes everything else survivable. 

Right now, Hannah is a medical-equipment-free special needs child.   With the exception of her braces, which honestly I consider such a benign piece of equipment, no one looking at her would know that she is affected by this horrible fatal disease.    She just looks like any other beautiful baby girl you would see on the street.   No one really sees a special needs child.

Even more so, *I* get to feel like she is any other beautiful baby girl on the street.  The way she acts, smiles, rolls over to find me, etc., she is just like any other child.   I get to live in denial for many hours a day that anything is wrong with her or very minor things that are wrong.   For those many hours, I don’t feel like I have a child who may only be with me a few more months to a few years.

However, having to put in a tracheostomy will kill my freedom of being able to be in denial about what is happening to her.  It will be a constant visual reminder every moment of every day that she is losing this battle with Gaucher’s disease, that this disease is affecting her more and more.  

As long as she is without the trach, I feel that there is still the possibility that something may come up to save her life, that I will find something or  someone to help her, something to stop or even reverse the damange this disease has caused.  

It is almost as if this trach is the “fine line” between hope and loss.   It is also as if this trach is the “reality check” that we have to face with sharing with Abigail and Ethan about how serious Hannah’s condition is because they don’t know of any other child with a trach. 

I know that I will get used to the physical act of taking care of her with the trach, I know that.  I know that the trach will improve her quality of life since she is still learning new skills and still is an active and coherent child.   

I need to be able to continue to have my many hours a day of denial right now.  I’m not stupid, I know what the future will hold, which is why I need as much “denial time” now to really allow the freedom of having a somewhat normal family for Ethan and Abby and even ourselves.  

Because once we are no longer able to live in denial about this, I am afraid of falling apart and losing it.    I mean, seriously losing it.  I just can’t afford to do that.

So, that is what it is.   I so don’t want to be faced with having to do this.   I’m so scared about the emotional fallout from myself, my husband, my kids, and our families and friends once we have to cross that line.