TBT-April

April is a month of showers, renewal and for Boo a lot of doctor’s appointments. This Throw-back Thursday I explained on April 1, 2013 why April is probably my least favorite month.

Boo is now (thank goodness) on a 6m schedule for her specialist appointments. We try to group the visits together so we only have one 2-3 hour trip but that never happens. So for the month of April it seems we drive back and forth every week.

It is really, really, really hard not to get frustrated. I do like and respect all of Boo’s doctors. Okay, not all. There is one that moved to Singapore that I haven’t forgiven for leaving us and I cannot stand her replacement. So make that I like and respect all but 2 of Boo’s doctors.

But I am constantly amazed that if you think of the amount of time, money and devotion they have spent on their profession they would have more to offer us than:

                     Boo is an enigma

Really, I knew that and I did not go to Harvard. Think about it, because I am not alone in this, Boo has 14 that is FOURTEEN different doctors, fellows, and researchers looking over her chart. She has an additional team of 10 therapists (between SPT/OT/PT) and let’s not forget that she has her teachers and aides that are part of her team.

So combined, the education and experience of about 30 people have no idea why Boo is the way she is and what it means for her future.

Instead this is what we are told:

  • We never thought Boo would talk
  • We never thought Boo would walk
  • The science isn’t there yet
  • Boo doesn’t fit X syndrome because she does Y
  • We don’t know why she turns blue in only her hands and feet.
  • You have her in all the treatments we would suggest so just keep up the good work.

What they don’t hear is this:
  • Boo is in 3 hours of physical therapy a week
  • Boo is in 3 hours of occupational therapy a week
  • Boo is in 4 hours of speech therapy a week
  • Boo is in a special education program 32 hours a week
  • Boo has a family that is integrating therapy in everything she does
  • Boo has a family that will NEVER stop looking for answers–so quit telling me to stop looking.
  • Boo works harder at her life than you do looking at her chart (okay, I don’t say this but I think it really loudly)

What they don’t realize (I think) is that if we stopped any of the above Boo would not have made the milestones/gains she has. If we stop and, heaven forbid, go on vacation for a week Boo regresses. Severely.

So all-powerful doctors how about instead of telling me what you didn’t think she would do you tell me that if you do not have the answers some one out there does. And refer us to them. What is one more doctor in the grand scheme of things. Or heck do a conference call and discuss her with one another so no stone is left unturned!

After all our insurance company already hates us! 

As we enter April and I gear up for the next round of appointments I am arming myself. I am researching so I can ask the questions they do not. Thank you to all you mom bloggers out there who have given me more places to look. Thank you for letting me know that we are not alone in our undiagnosed state and provide some light in this dark scary place. And I will continue to be a thorn in their side.
 
Because I am Boo’s warrior mom. Hear me roar!


I am participating in the 31 for 21 blog Challenge to raise awareness for Down Syndrome. 
 
 

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