Operation Hope: Big Changes

Important note: I’m trying to post this around noon on Wednesday.  Due to our current Internet situation, I’m having trouble uploading anything to the site.  Right now I’m at the mercy of my incredibly slow T mobile data connection  that extremely hit and miss.

This will be in the outbox to post when  the data connection on my phone is stable enough to upload. 

I’ve been meaning to write about this for the last few days but I just haven’t found the time or quite frankly, the energy.

I received a phone call from Gavin’s autonomic specialists office at the Cleveland Clinic.  The nurse was returning our call from last week.  Dr.  Moodley was back in the office and so she had a chance to speak with him about everything..

Here’s the long and short of the conversation.

Dr. Moodley agrees that Gavin needs to be seen at Johns Hopkins, in Maryland.

He added that JH has an amazing ataxia clinic.

As I’ve said many, many times, we have the best doctors and they have the best staff. 

Dr.  Moodley wants to remain involved with Gavin, especially because he is so rare,  and make sure everything that can be done, is done. 

As far as Lizze and I are concerned, we would keep him as Gavin’s primary neurologist because he’s awesome,  he cares and he’s much, much closer to home. 

I’m waiting to get ahold of Johns Hopkins and find out the logistics, time frame and if this will even be possible. 

I don’t know how we would make this work but I would imagine that a trip out there would cost more than a few hundred dollars.  Granted, at least for us that a lot of money  but it’s a realistic amount and something we would likely be able to figure out. 

Besides, when it comes to my children, how could I not go to the ends of the earth for them?

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MBee

Baltimore, right?  We had to go to Baltimore and stayed at the Brookshires (work).  Nice enough place, a real breakfast, and a business ‘drinks and tapas’ thing at 5; both open to all guests.  I know there were guests who where there for a hospital visit and seemed to have a discount.  We tagged along on the trip and would get up and eat around 8:30 and it was enough to only need a snack at lunch time.  We avoided the 5pm thing because of our (then) little and the last night, saw a bunch of young guests w/gr-parents, getting on the elevator with plates of fruit so I think she would have been fine.
I just wanted to mention that because if you didn’t qualify for a Ronald McDonald’s place, there may be other patient friendly options.  (regardless of the town)

lostandtired

MBee thanks.  In don’t think this will be too bad.  This was really good advice and I appreciate it.

jjean3940

Hopkins has several family housing options, that being said, I am not sure if the child has to be inpt in order to utilize them.  When you speak with the clinic, request a social worker, they will be able to assist.  Any questions about the area, just let me know, I worked at Hopkins for 8 yrs…

KathyBrower

Bring your own food, Angel Flight and Ronald McDonald rooms at the hospital.

Hucksgirl13

Try to have a fundraiser???

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