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Roadtrip!

I’ve been working on finishing an entry about a recent shopping trip with Marley, but for some reason it hasn’t been easy to write.  So, it sits in ‘Drafts’ waiting for its ending as I feel guilty for not posting more frequently.

This entry, though, is so much better than the one to come! I think this is the first entry that I won’t have to list ‘Marleyisms’ or write about challenges. That might mean it’s a shorter entry, but it sure is sweet…..

A month or so ago I called Kluge Children’s Rehabilitation Center in hopes of getting Marley in for an evaluation. Ben and I agreed that getting a medical diagnosis would be more beneficial at this time than going through the local school system since they would mainly be interested in the education side of things. Unfortunately, the waiting list is so long at Kluge that you don’t get an appointment when you call right now. From others’ experiences, it seemed the norm to be given a date for 6 months or so away, and then to be called with a cancellation. When I called, however, I was told that they can’t make any appointments at all right now, but that we will be put on a list. I gave them our name and number and thanked the woman for her time.

Since then I’ve had this feeling of dormancy. Like, what do I do now? I got her on the list– but here we are still struggling on a daily basis and attempting to get people to understand, well, her. Honestly, we are still struggling to understand her.

After a rough weekend, I decided that this week I would do more. I spent the weekend pouring over lists of places to take her to get a diagnosis– it was so daunting. I honestly didn’t know where to begin– do I call the hospitals & colleges 2-3 hours away or do I call the private clinicians that are closer? Will they know how to work around our insurance to get (even part) of this covered? How are we going to come up with the $4,000+ for these tests? What if I’m wrong?

I posted a facebook status mentioning that the following day was going to mean lots of stressful phone calls in the hopes of finding someone to see Marley. My amazing best friend, Mandi  Amanda, mentioned that I should try Kennedy Krieger Institute  on the Johns Hopkins Medical Center Campus. She and her dad have OI and visit there often. She encouraged me to get in touch with KKI and even offered (promised? insisted?) that she would go with me if we got in.  After all, she knows this place like the back of her hand.

As I read about KKI and filled out the ‘Request an appointment’ form on their website, I noticed a link for ‘research’. Upon clicking it, I was taken to a list of studies currently going on and in need of participants. I was excited to see that there were 2 that Marley may qualify for. I mustered up the courage to call the numbers listed below each and left messages with Marley’s name, age, and my contact info. I figured I’d give it a few days and then maybe try emailing the addresses that were also listed on the info sheets.

Imagine my surprise when I woke up this morning and found a missed call on my phone from a number with the Baltimore area code! I checked my messages and heard a friendly voice belonging to Alli Koch stating that she was interested in talking to me and I quickly wrote down the digits to the direct line for her. I made the kids breakfast  and entertained them for a bit before letting Marley turn on Netflix. They became engrossed in watching Rugrats and I jumped at the chance to call Alli back.

Let me just say– she was amazing! She was so friendly and patient! She went over our demographic info and allowed me to tell her a bit (a lot?) about Marley. She listened as I rambled about zombie gardens, vegetarian vampires, and Mo’s ‘other mom who lives in China’. She then moved on to a 40 question ‘mommy quiz’ about Marley. Some questions were things I’ve answered to myself many times while reading online, but some really made me take pause. Some were downright hard to answer with a solid ‘yes’ or ‘no’.  She was understanding when I didn’t feel like I could answer quickly and allowed me to think aloud to her until I finally hesitantly answered ‘yes(?)’ or ‘no…….’ to each question. She really seemed to ‘get’ Marley’s spirit and the fact that the kid is a riot and completely awesome!

After the ‘mommy quiz’ she explained that the info would be passed on to Dr. Elaine Tierney so she would have it when we came for Marley’s evaluation.
An evaluation which would be provided for free.
An evaluation which will result in a diagnosis.
An evaluation which is scheduled for 11/2/11. (Yes, I nearly fell over. I thanked her 50 times and then cried when I hung up.)
Oh– and, funny story, it just so happens that my amazing best friend will already be at KKI on 11/2/11 with her dad.

Someone was smiling down on us today.

They even sent a rainbow…….

 Yes, Marley played outside today in her swim suit.
This was the compromise between “Mommy, I want to swim” and “You can swim in the tub.”

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2 responses »

  1. Wow, that’s amazing!!!! 😀 😀

    Reply
  2. Pingback: “Well, at least you KNOW now….” « "Marley, stop…"

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