Tuesday, March 23, 2010

It's almost April...

...and that means a month of slight craziness...again. I am hopeful that it will prove less crazy than the five months that were October through February. I can't imagine having to go to the doctor with our girly that much ever again.
However last week we got casted for our orthotics. We are waiting on the phone call for the appointment to pick them up. I'm thinking it should be this week, but they have to wait on the approval from insurance. So it's a big circle of waiting right now.
We also had our 18 month well check on Friday. Over all it went well. Abigail is a fairly healthy and normal kiddo. She got her last scheduled shot until pre-kindergarten! WOO HOO! The only thing we are watching is a crazy weight gain pattern over the last few months. She did grow in height which is fantastic. However over the last few months her weight has gone up and down, up and down, and is now only slightly up. She went from the 75% a year ago to the 36% on Friday. So she's a bit of a skinny bug (although because of her muscle tone issues she walks with her belly sticking out so you can't tell). We will go back in three months for a weight check.
But April are our bigger appointments...again. On the sixth we have her pulmanologist appointment. We had hoped that the winter months would be uneventful. We were told if they were we may be able to stop doing pulmicort everyday. But they weren't. They can reduce her dosage though so I'm still holding out for that to be a possibility!
On the 20th we go to the neurologist for the NF. So far I haven't gotten too crazy about this appointment. It's nice to have one under our belt so that I know what to expect. I still wonder as we get closer if I'll become a slightly crazy woman again. I have already started to wonder if they will order another MRI, or if we will be referred to any more doctors. I also wonder if they will find anything new or scary.
And our last appointment is on the 28th. It's just a dental check up. Nothing crazy out of the ordinary. Abigail doesn't love when they clean her teeth (she has some issues with build up, as well as the iron she takes staining them). However they shower her with cool gifts afterwards and tell her how cute and wonderful she is. So she quickly forgets. Such is the joy of a pediatric dentist I guess. I only get a toothbrush, toothpaste and floss when I go.

I do have a small confession. Perhaps some of you other NF parents who follow can tell me if you ever do this. I was thinking about Abigail the other day and all of her spots and freckling. I was thinking about how there are a couple of things that are nearly guaranteed to happen at some point in her life. And I didn't realize I thought this (some weird subconscious thing) but I thought "she won't have any of those, she doesn't even really have NF." I don't think I'm in denial. Or perhaps that is the stage of grieving I am going through right now. But apparently I am somewhat convinced she doesn't have this.
Don't get me wrong. I don't really believe this. I accepted she has it much before Jason. He even denied it when she started getting the freckling. I just kept telling him over and over that he needed to be prepared because she would be diagnosed. And she was. But somehow I find myself not convinced? Our crazy minds I guess.

If you think about it as you are going through April you can be praying for Abigail and I (and Jason).

Abigail bowling for the first time. She rolls it...

...and watches it knock down the pins. She also clapped every time. :)

Peace out,


  1. Your daughter is just beautiful! What a lovely adoption story.

    Love, Bree

  2. I was led to your blog by someone who passed through mine. I have a 16 yo biological daughter with NF1 and we are also an adoptive family.

    Your daughter is a real cutie.