Sunday, June 26, 2011

My hair is no longer this color anymore.  In fact I plan on doing a photo post later in the week to show you how often Rachel & I have changed out hair color in the past few weeks.  It's quite ridiculous.  Just a note to my own self:  I LOVE your hair this color, Rame.  When fall rolls around, this is all you baby!

Tuesday is quickly approaching.  It's the day of our big appointment with the geneticist.  The one I have been waiting on for months.  It's the last of many big appointments we have had this year with Mabel.  I am anxious and nervous but excited to be at this point in the journey.  I believe we'll get some solid answers very soon.  I spoke with 2 genetic counselors in a conference call a few days back.  They were digging deep into family and medical history but I have a feeling it was just the tip of the digging they'll be doing.  I also have a feeling that Tuesday will be emotionally exhausting for me.  However, it is necessary so please pray that I will have peace.  Although I'm not sure what to expect from the appointment I know that there will still be more waiting for possibly weeks afterward.  I need peace and strength during that time as well. 
The counselors who I spoke with on the phone will be meeting with us on Tuesday as well.  They also said that they will be discussing Mabel's retinal dystrophy with us in detail.  I'm thankful to have more information in any form.

Today I got the first 'go ahead' for the 5k.  I'll be setting a date into stone very soon and hammering out the remaining details over the course of the next week.  I do believe, as of now, the race will be in August.  This will give people time to get ready and I'm hoping to have a diagnosis for Mabel by this time so we can donate to whatever that will be.  If not, we will still be donating to the National Organization for Rare Disorders.  Mabel's retinal disorder is rare in children and epilepsy, as we all know, is rare and unfortunate as well.  Combined--we have ourselves a rare jewel indeed.  And she is precious and perfect.
And she smells good.

I will be making our first donation to NORD later this week.  Probably Thursday.  I will try to post the "receipt" so you can all be involved in the joy it brings to join together and give!  We always want you to feel confident in giving to 'Mabel's Able' as every donation goes directly to charity or a cause.  We are doing our best to research and make Mabel's Able an official non profit organization but that will take some time.  In the meantime, thanks for trusting us and being involved.  I'm so blessed to call you my friends.

As far as the button rings go, I think I've decided to make button bracelets instead.  I'm going to hopefully be getting the supplies tonight or tomorrow and making some as we travel on Tuesday.  I believe the bracelets will be easier, more stylish and will last longer.  If you absolutely would prefer a button ring, please email me asap and I'll make sure to get you one.  Otherwise, I think I'll have more luck putting together some cute bracelets quickly and hopefully getting them mailed out later in the week or the beginning of next!  Thanks again for your love and patience.

So as you see, we're busy.  Things are moving along and it's exciting. 
The Lord is doing big things in our midst and I can see Him moving.  He is ever present and so very near.  He is a good God.  Tomorrow I'm going to post a story that will touch your heart.  In the meantime, enjoy your Sunday.  Family, God, Food.
Whatever this day is for you--just soak it all up.  It is good.

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