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Coming up for air (LONG...again)

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Old 08-16-10, 05:27 PM
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Arrow Coming up for air (LONG...again)

THANK YOU all for being so kind and supportive. I

My dad is slowly getting back to his normal self. He stayed with us until Thursday and then went back to my grandmother's house. I've talked with him several times since then and he sounds better each time. He went back to work today and worked a half-day but left because he was feeling weak and shaky so I think it will take time for him to fully recover.

Alex's appointment went as well as could have been expected. The doctor is referring us to a geneticist for counseling and determination of the next step. HOWEVER (and it's a big "however"), she gave us an official diagnosis of Ehlers-Danlos Syndrome and she is confident that the geneticist will confirm that. This new guy specializes in recognizing all types of disorders so she said that if Alex has something other than EDS, this doc will know it or be able to figure it out. I'm calling today to set up that appointment. But now that we have a diagnosis, we can get rolling with other services for him and I'm hopeful for what the near future holds. We still don't know about a long-term prognosis for him but for now, having some kind of diagnosis helps a little bit.

Our family went to visit Andy's family in NJ last week and because of Alex's appointment, he and I stayed back while Andy drove the girls to Baltimore where I was supposed to fly and meet them, then we'd drive all together to NJ. know what they say about the best laid plans.
Alex and I got to the airport at 3:15 for a 4:15 flight (our airport is really small so there's no need to arrive super early). Our flight was delayed 75 minutes so I called Andy to tell him to slow down. We finally boarded our plane at 5:30 and the captain come over the speaker almost immediately and said that our flight was going to be delayed further--and we wouldn't know by how much for another 2 hours.
So we deplaned and hung around in the terminal for an hour. It was H-O-T in there because the A/C wasn't working and it was full of people. Alex was tired and cranky so I walked him around in the umbrella stroller until he fell asleep. Once we were told it would be another hour before we'd have an update, I hopped a flight to Atlanta. We had a three-hour layover in ATL (8:30-11:30pm
) and then we flew into Philadelphia, landing at 1:30am. Andy's family lives in Cherry Hill, NJ which is only about 25 minutes outside of Philly so Andy and his brother picked us the convertible Mustang...with the top down.
Alex cried his head off for the entire drive to their house so as soon as the tires hit the driveway, I hopped out of the front seat and grabbed my little guy. He'd had a ROUGH day!!

BUT--once we were there, it was great. They have an in-ground pool, hot tub, swing set, sand box, trampoline, etc. etc. etc. so the kids LOVED it! We just relaxed and did almost nothing--which was GREAT!

Then we drove home and it took forever! A 9-hour trip turned into almost 13 hours with stopping because Sarah was car sick, stopping for lunch, stopping to buy a sippy cup because we left Alex's in NJ, stopping to find our way to the Flight 93 Memorial site (which was moving, eerie, and sad), and stopping for dinner. We got home at 11pm and I had to shower Charlotte because she had Kindergarten Breakfast (like an orientation) this morning at 9am.

It seems like we're in a hamster wheel and can't get out. BUT--once school starts, we'll be more grounded and be in a better routine. So hopefully next week we'll settle down and be calmer around here.
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Old 08-16-10, 09:00 PM
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It's good you got some answers. I hope that you get a good prognosis, and that it's manageable for him and you. I continue to think of you and your family daily.
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Old 08-16-10, 10:39 PM
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OMG! You need a long bath and a nap! I am glad you dad is making progress. I hope that you guys can get Alex all the help he needs, he is so lucky to be in such a wonderful and loving family.
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Old 08-17-10, 05:30 AM
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what a whirlwind Deanna, so glad to hear your dad is recovering and that you are getting some progress with Alex's diagnosis. That trip sounds like a nightmare
how you managed it is beyond me but I'm glad you got to chill out with Andy's family.
I hope your life gets a lot less stressful over the next few months
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Old 08-17-10, 07:58 AM
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One day at a time.

I'm glad you had some family time to relax. Now regroup and I hope that all goes well for you guys with services and appointments.
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