Why I don’t really like April

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!

  

15 thoughts on “Why I don’t really like April

  1. Kristi Campbell

    Not only do I hear you ROARING, I hear you yawning because that's a ton of school and therapy. Wow. 32 hours of school? That's amazing. We get 26 1/2 and sometimes I wish it were more because I can see a difference when Tucker's been on spring break (last week). Although it's exhausting for them, too.
    And SO frustrating that 14 doctors can't tell you more. But it really does sound like you're doing everything right. Here's to lots of strength and lots of wine for the evenings in April!
    Hugs friend!

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  2. Janine Huldie

    Kerri, I can only imagine all this being so frustrating, but I will say it again you are truly a wonderful mother and my hero for all you have done to help Boo. Boo has made all these wonderful strides, because of you and your constant advocacy for her. Truly know this can't be and isn't easy, but god bless you!!

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  3. Big brother, Little sister.

    Holy crap that's a heap of appts not to mention weekly therapy! Does insurance cover or provide that? Very different to here where 0-6 is supported then you don't exist after that! 😉 good luck with all your reviews! Thanks for acknowledging Andrew on my blog too! He loved that!

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  4. susan nichols

    I hear you! I have been there myself. We take in and adopt special needs/medically fragile children and one of mine is 11 now and we still don't have a name for his syndrome. We have stopped looking and really don't care anymore as the treatments and therapies would be the same as we are doing now. He has a lot of diagnosis but no broad name of a syndrome to go under and that is fine with me now after all this time. We love him just the same and having a name would not really change things that much. I pray you find your answers, she is such a cutie!

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  5. Kerri Ames

    Charity you should look into the public school system. Boo is in an integrated preschool in the mornings and then tranisitions to 1:1 ABA/discrete trials for the afternoon. It has been wonderful for her!

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  6. Kerri Ames

    Holy crap, I am rubbing off on you 🙂

    Insurance did not cover everything, we used to pay out of pocket for supplemental insurance. But when Boo got her legally recognized as disabled it made things a lot easier. And Andrew totally deserves a shout out!

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