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| Entrance to Ronald Mc Donald House of Connecticut |
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| I like how the mom is holding up the entire building for her family.... |
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| Just a wonderfully calming place to sit and relax |
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| Sun room down the hall from our room |
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| Better than any hotel bathroom for sure... |
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| There were welcome baskets for both myself and Milena!! Provided by previous MALS' patient's families. |
Hi there,
Ok I'm finally "starting" this blog, info page, record, whatever the day after Lena's surgery.
But better late than never. This is 100% written and posted by Jennifer - with Lena's permission.
I'm gonna do this in two parts: the "I just want the bullet point of info" portion; AND the "Jennifer style of way too much info" portion. That way you can choose to skim or get completely involved in my madness.
For those of you that don't know our MALS and multi-systemic chronic illness story - I'll do a "catch up" post or bio in a couple of days because, um, we are a LITTLE overwhelmed and busy right now. I'm basically gonna catch up with the day we left:
6 May 2019 - Monday
- Traveled from Dallas, TX to Laguardia, NYC, NY
- Arrived and drove a rental car to New Haven, CT
- Checked into the Ronald McDonald House of Connecticut
- Slept like babies
Ok that was the "quick info". If you don't like the wordy parts then LEAVE NOW. Seriously. GO.
JEN'S version of 6 May 2019 - Monday
Travel: Our plane left at 5:00pm. Because I am ME, I had 7 hundred billion things to do before we left. I seriously fit in: bathing the dog, stopping by my work to say good by to the residents (I work in an assisted living facility), a trip to the grocery store, finishing packing, etc, etc before we had to leave for the airport at 1:45pm. Lena was equally busy as she had to stop by the High School and take 2 finals (she was leaving the week befor her Senior exams). Somehow we did it. Pretty sure I left a wet load of laundry in the washer. Whatever; we made it on time.
Got to the airport. Felt EXTREMELY grateful for Uncle Steve Troxel, who coughed up a multitude of frequent flier miles so our tickets were all free. THANK YOU. Of course I packed too much. Milena was pushed through the airport via wheelchair by Delta staff because walking exhausts her. Plus carry ons. Gate was remarkably close to security. Made it with plenty of time to spare. I parked Lena and our carry ons and went off to forage for our drink and food. Lena can't tolerate water or really any food besides mash potatoes, life cereal, and saltines. I find blue and orange powerade (it will do), and beg 3 packaged of saltines from TGI Fridays.
We preboard. Get Lena set up. She never really has to visit the restroom, cause she is already so dehydrated. I'm another story, I've already gone twice (I call it "mom bladder"). Flight is unremarkable. We fly into LaGuardia in NYC because after 3 years of traveling with my daughter's health issues, I have learned that no plane change equals less travel time equals less trauma since they really suffer with pain, nausea, etc when they travel.
Side note: Since I didn't finish my "POTUS Proposal" for my University Government class, I had to work on that during our entire 2 3/4 hour flight. I'm quite up to speed on "US Foreign Policy regarding the spread of disease in Nigeria" or rather, how to invent memo on that subject when YOU REALLY HAVE OTHER THINGS ON YOUR MIND...... Regardless it was quite interesting. I'm pretty sure compiling facts and figures on the how 70% of new AIDS/HIV cases originated in Nigeria in 2012 and info the more recent Ebola, while traveling isn't ideal. But it was due via online turn in by midnight CST that night sooooo. (Turned it in at 11:36 EST in CT...got 170 out of 200. I'll take it.)
- Arrival at LaGuardia and journey to the Budget Rental Car
So we are always the last ones off the plane. Easier to get to the wheelchair that way. Mohammed the Delta wheelchair dude welcomes us and we immediately ask him to babysit our drinks while we use the ladies room. We mosey on over to the baggage area...ours are the last ones on the carousel. It's about 9:45pm. We roll on out to the "Shuttle to the shuttle to the rental car place". Mohammed helps us get on the first shuttle, but then we lose him and the wheelchair. Everyone clears off the seats when we get on so Lena has a place to sit (her legs aren't working too well and her gait looks a little like gumby on a stiff day.) Lena and I sink into the shuttle seat, kinda snuggling because she is T-I-R-E-D. We are having some goofy discussion and I can see there is a guy maybe in his late 30s in a rocker t shirt and bandana with a back pack kinda glancing at us. We get to the first stop and it's like you are supposed to walk across the street and roundabout to the other side. We are clearly gonna need help. Rock T shirt guy offers to run across the street, first shuttle driver says he bets other shuttle driver would agree to drive around and pick our disabled buns up on this side of the street. Rock T shirt guys says, "I'm glad to help!" And as he starts off he turns around, leans in and says, "By the way... you both are really beautiful." I know it sounds creepity....but it was genuine and sweet. He talked the Budget Shuttle guy into driving around for us. Rock T shirt guy went off on another shuttle. (Lena's comment: I think he was gay. Jen's comment: then that means even more because then he has better style...no politically incorrect stereotyping intended with malice.)
A rather crazy shuttle ride later, (lots of construction at LGA)...and an interesting converstation with two guys who live in Queens, who insisted "we are locals", several times...but then talked about how they grew up in Boston and we watched them pick up a rental car right before us.....? Whatever. Budget did us a solid with a nice Kia Sorento and and hour and 20 minutes later we were in New Haven. Lots of Taylor Swift was enjoyed along the way.
- Ronald McDonald House in New Haven, CT
It was late. We got there. Right off the bat AMAZING. Since it was almost midnight, we just got our keys, and got to our room, and readied for bed. But worth mentioning are the two baskets we found waiting for us on the beds. One for me, with a "Linus blanket" (pictures to come) and a personal note from a parent of a previous MALS surgery patient...with tips and suggestions. The basket had some other neat items for our stay. Lena's basket had a ton of fun stuff, but the best was the "Unicorn" super soft pillow and blanket (see picture). Her surgeon is Dr. Richard Hsu, of The Vascular Experts, Danbury, CT. His patients are affectionately known as "Hsu-nicorns".
More about the Ronald McDonald House later. We were off to dream land (well, it was more like stress-out-about-alot-of-pre-surgery-details-land but again, this is our lives now, so whatever.)
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