February 18, 2013

2 Missions

Mission 1.  To find out if Sadie has Mito disease.

  People ask me all the time "what can I do to help you?".  I say "nothing".  Why?  Because I've never been one to ask for help.  I am very independent and I figure things out on my own.  Plus, I don't exactly know what "help" to tell people.  This is both a strength and weakness for me.  I've learned over the last 15 mo that I can't do everything on my own, I still try too, but I have learned to ask for some help. Honestly it kills me to ask, but... I'm trying.  So when I get help unexpectedly, I am so thankful for it.  Especially when it's just what I needed, it makes me feel a little more hopeful.  It makes the fire under my behind a little more hotter.  I feel renewed in a way.  Does that make sense?
  My sweet sister in law (my brothers wife) joined in my mission to find a mito Dr for Sadie.  She has a connection at a childrens hospital in Indiana and asked if I minded if she asked around for a Mito Dr.  Minded?!! I asked her "why she has held out on me this long".  But, it's all good, everything comes in due time. She asked around and sure enough they said there was a good peds neurologist that works with a lot of mito kids at this hospital.  I did some research of my own and then gave the Dr's name to Sadie's pediatrician.  She is going to look him up and if she agrees then she will get an authorization from our insurance company.  Hallelujah! I may actually be getting somewhere.  We shall learn this week or the beginning of next week if this Dr is approved.  Fingers Crossed!

Mission 2. To find out what type of Pontocerabeller Hypoplasia (PCH) Sadie has.

  There are at least 6 types of PCH.  I have known this since the beginning.  Some of them are very obvious that that is not the type that Sadie has and then a couple are a little questionable, but none of them really fit her.  When I took her to the geneticist 8 months ago the Dr said that trying to figure out what type she has without her matching more of the types that trying to test her would be like looking for a needle in a haystack.  I excepted that answer.  After all, there are a bazillion genes in our bodies.  Well... I don't except that answer anymore.  I recently "met" in a support group online some wonderful families who have kids with PCH.  I don't know why I haven't "met" this group of people earlier.  But again, everything is in due time.  After chatting with them and reading some of their information, I realized that a lot of them know what type of PCH their child has.  So, it must not be too hard to figure it out, right?  I asked some questions and got some ideas from them on how to get her diagnosed with a type.  I called Sadie's geneticist today and had to leave a message.  Hopefully, they call me back today and I can ask my questions and hopefully get some blood work ordered.  We shall see.  Again, fingers crossed!

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