5.03.2009

HOME!

Oh, I can't even tell you how exciting it is to be home. Minus the doctors appointment, we really had a fun few days - just us 3 girls. I wish the weather had been better, but it sure didn't stop us from seeing a few local attractions.

It was so good to step off the plane this afternoon and see my husband and my 3 other kiddos. After all the stress, frustration, and confusion these last few days, It was nice to just let go for a minute and enjoy my family.

Sorry for making you wait to hear about our appointment, but to be honest, I wanted to make sure I was writing with a clear head and that I wouldn't make any "bad moves".

So, on Friday Carson had her appointment with Dr. "C". It did not go the way I thought it would. Actually it was a "foul ball" out into left field. He wasn't interested in reviewing any of her past medical records/charts, wasn't interested in viewing any of her past MRI's, he wasn't interested in seeing her "sleep rocking" video, and he wasn't even interested in feeling her head........ the only thing he viewed was her 2 month post op 2nd cranial expansion MRI. And with that the words "she doesn't have chiari" fell from his lips. I looked at Jenni and about fell off my chair. I don't think I even remember what he said for the next 30 seconds. How could that be? After hearing 2 well known "chiari" docs tell us she does, and for him to tell us she doesn't was a "smack in the face". SERIOUSLY!!
After putting a little pressure on him to view the sleep rocking video he told me that it was like nothing he has ever seem before. NOW we've stumped the man.
Prior to seeing the video he told me it was most like behavioral, but the whole story changes when she is sleeping. They then asked if we would be interested in coming back to see a different Dr. "C". One that could possibly get to the bottom of the rocking - but remember, no guarantees.
I don't think I can bring myself to take her back out East.

So, I've shed a few tears, punched a few pillows and have decided that we will stay with our local team. I've got to erase this appointment from my brain and pretend it did not happen.
I do not regret going, because if I didn't go, I know I would be playing the "what if" game. It was a great experience, but I have to plug away now, one day at a time,with our team here.

Our next move is on May 13th when Carson has her ICP monitor placed in Madison.

I will post pictures soon, so stay tuned!

a BIG hanks to my dear friend Jenni for going to hang out with us!

6 comments:

BoufMom9 said...

wow. How frustrating.
I am sorry it wasn't what you hoped for.
I pray you will get some answers for sweet carson soon.

Kath said...

That sounds so annoying :(

I hope Carson's ICP minotr placing goes ok (hugs)

lace1070 said...

How frustrating to have an encounter with a doctor like that. I know that a dismissive doc appt can really knock you down ~ but hang in there ~ trust your instincts as a Mom and know that you will find someone who will find some answers for you. Hugs ~ Lace

Becky said...

Holy crap... I am pissed for you.. did you not want to just smack that Dr up side the head... I commend you on your self control. seriously. Did your friend get any answers about her child?

Anonymous said...

i'd like to hit a few pillows for you as well!!! What a jerk!!!!

But at least you are hopefully at peace with your "team" here now!!

Hugs,
joy

Anonymous said...

Cin - I'm so sorry that the dr. that was able to fix our kids didn't have answers for Carson. We have trusted him with our whole world and I was hoping you'd find the same peace he brought us.
Kaci