Archives for February 2009

This was the cost of the Infusion Center, the 3+ hours we were there, as well as the cost of the Cerezyme for Hannah.  Remember, Cerezyme is used based on weight, and Hannah only weighs 16 pounds.   This doesn’t include all her other doctors and procedures — this is JUST her biweekly infusion.

Cerezyme – over $3300
Infusion Center – over $10,800

There are times when I forget that Hannah is sick.  We are so lucky that she acts so healthy and is in no pain.  But then I start thinking about it, and it really gets me down.  I go through periods of feeling optomistic that we are going to dodge the “big bullet” and only have a minor complications from her Gaucher’s Disease.  But then I see those abnormal eye movements, especially when her left eye gets a little stuck a bit when she is trying to focus.  Bam, right back into reality.

Dr. S. said that we are doing everything that we can do and that we should be doing, yet, I feel like I’m not doing enough for her.  I know, I’m doing everything I can, but why can’t there be more for me to do?  Why won’t eye exercises strengthen her muscles even though the neurologic damage has already started taking place?  I know the answer…it isn’t her eye muscles that are the problem. 

It is what it is.  Whatever intensity of Gaucher’s Disease, type 2 or type 3, at this point, me wishing that it was different or pretending that it isn’t there is not going to change what it will inevitably turn out to be. 

I can hope, work, and pray for a treatment to help or even reverse the damage, but I still can’t change that this is our destiny.   Will we be successful in finding a treatment for her in time?  Or are all our efforts going to be an unsuccessful exercise in hope? 

I know in my head that the odds aren’t in our favor right now.  But my heart tells me that Hannah is going to be “different.”  She just has to be.

I’ve been so uneasy about tomorrow’s sedated hearing test since receiving multiple parents of type 2/3 kids sharing their stories via comments here and in emails.  Then, I received this email from Dr. E., Hannah’s lead doctor:

“The sedation should not be a problem. However, the test is not crucial for her management at the moment. We could wait to obtain the ABR at a time when she may need sedation for another test or procedure. If you would like to postpone just let my assistant know.”

I don’t think I wasted more than three minutes after I received that response did I call my husband and have him call to cancel (I was in the car picking up Little Girl A from preschool). 

I feel much, much better…

I received this email from another type 2/3 parent, and obviously, it made me very concerned.
 did read your latest post about Hannah being sedated and wanted to make sure that you check with a gaucher specialist before doing this… I learned the hard way.. my son was sedated for a simple MRI but as soon as the drugs kicked in he started with horrible breathing problems and we just spent hours getting him out of the sedation, no test was able to be done.  Please be careful as to what they give her because if they relax her to much its very dangerous.  Their involuntary reflexes are effected from the brainstem involvement so anything that relaxes that more is risky.  Just a heads up to be extra careful.

Thank goodness she emailed me!  I ended up asking both Dr. S. and Dr. E. about this, and here were their responses:
Dr. S.:  I don’t know. Sedation always must be done carefully and for a good reason.
Dr. E.: The ABR is a shorter test than an MRI and lighter sedation is used.  There is careful monitoring.  Has Hannah been sedated for any procedures thus far?

Hannah never has been sedated before, so now I’m paranoid about tomorrow’s ABR test…

We have a lot of firsts this week…

Tuesday, we start with M., the occupational therapist.  She is going to work with us on getting Hannah accepting solid foods (she still has the automatic tongue thrust when we try to feed her), drinking her bottle without having it dribble out of her mouth like a fountain, and help us with anything else she thinks we need to work on. 

Wednesday, Hannah has her Auditory Brainstem Response test (ABR).  That is the sedated hearing test I talked about a few weeks ago.  We have to be there at 8:45 AM, so I’ll probably leave the house at 6:45 AM  just to be safe!  What really sucks is that I’m supposed to “keep her awake all morning” (yeah right!), feed her the last formula bottle at 3 AM (yeah, so she’ll be screaming her head off around 7:00 AM when she is starving), but we can feed her a pedialyte at 7:00 AM (which she has never had before, so I don’t even know if she will take it!).  And if they are sedating her, why does it matter if she stays awake before or not?  Can you tell I’m not looking forward to this?

Oh yeah, and I have a root canal on Thursday morning – oh joy…