Tag Archives: flying

A Hitch in McKenzie’s Plans

McKenzie’s family hasn’t posted anything on her Facebook page, but I just read this article in the Tallahassee Democrat, which says McKenzie’s trip to Johns Hopkins for surgery has been put on hold indefinitely. She was supposed to fly out this morning, but yesterday the local hospital decided to refuse a medical release. Without that release, the pilot who had volunteered his time and plane is not allowed to fly her. The hospital has said that they will only release McKenzie to a Johns Hopkins medical transport.

Please pray that the bureacratic details are taken care of soon, and that Johns Hopkins will be willing and able to send a plane to get McKenzie, so that she may have her surgery.



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McKenzie Update

I wanted to let you know that McKenzie has got her plane and medical equipment! She and her parents are headed to Hopkins on Tuesday and she will have surgery about a week later. THANK YOU to everyone who has passed along her story and sent good thoughts. Please keep those good thoughts and prayers coming, that her surgery will be successful.


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Please Help McKenzie

McKenzie is a 2 year old beautiful little girl with a very severe form of Marfan syndrome. I first met her mother, Jennifer, a few months ago via NMF Connect, a social networking site for people with Marfan syndrome & related disorders and their families. McKenzie’s aorta is now larger than that of even many adults with Marfan, and she desperately needs surgery. If she does not get this surgery soon, she will die.

McKenzie’s family has arranged the top surgeon in the country to perform her surgery, and he is at Johns Hopkins. However, there are many things that McKenzie is going to need in order to make the flight, and that is where we’re hoping that you, your friends, and your networks can come in.

AngelFlight has agreed to transport McKenzie from her home in Florida to Johns Hopkins in Maryland, but in order to do so, they need the following items:

– Plane to fit 5-6 people and have access to use a AC adapter or Car Adapter to plug in her equipment.
– 2 ventilators weighing appx 10 lbs each
– 1 suction machine weighing 8 lbs
– 2 oxygen tanks
– Emergency bag with supplies
– At least 2 other travel bags

If you, or anyone you know, is able to help with these items, you may contact Jennifer via McKenzie’s Facebook group Pray for McKenzie. Thank you so much!


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2009 in Review

It’s been a busy year in our household! Here are a few of the highlights:

January: I had just graduated from graduate school and was enjoying doing nothing but being pregnant. About halfway through the month I learned my delivery plans were going to change pretty drastically. My grandfather passed away after a long battle with cancer; his funeral happened while I prepped for my c-section.

February: At the beginning of the month we welcomed Menininho. It was a complicated post-delivery, one that I hope to never repeat. We moved to California and I made my first silly new mom mistake.

March: I learned of the losses of two Marfan friends. Menininho was blessed and formally given a name. Our family came to visit. Mark was diagnosed with Type 1 diabetes.

April: A pretty boring month, but I did blog about some of my baby “must haves”.

May: We started using cloth diapers and won’t go back! Mark officially graduated with his MS. I also had the stress test that started a chain of events.

June: Mark and I celebrated our 2 year wedding anniversary. I also started a series of posts about my life with Marfan.

July: My Life With Marfan posts continued and I prepared for the annual National Marfan Foundation conference.

August: Menininho and I flew solo to visit my mom and sister. I finished up the series and went to my 4th conference, where besides working with the teens I was also one of the closing speakers.

September: My cardiologist discovered a problem with my heart and I decided to wean Menininho early in order to start a new medication. A few weeks later Mark was diagnosed with Celiac disease.

October: We had a mishap at the pumpkin patch, and then better success. I moved my blog from Blogger to WordPress.

November: I relived some childhood memories with MamaKat’s Writers’ Workshop and we got to spend Thanksgiving in Ohio, seeing all of my and Mark’s extended families.

December: The inner breastfeeding advocate in me wrote a post about a woman’s right to breastfeed and the inner patient advocate in me wrote a post about being an empowered patient. We bought a tree, spent too much time in the ER and had a failed Christmas tradition.

I want to thank all of you who read my blog, who give me feedback. I am humbled that you take time from your day to read what I have to write. I look forward to getting to know more of you and your writings in 2010!

~ Maya


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Of “Fun” Flights and Other Things

I have been terrible about keeping up on my posts recently. I blame it on conference! I finally have my speech written though, and I think everything is ready to go for the teen program so I can almost sit back and relax (I will after I finish some fundraising stuff for our local chapter, later this afternoon).

Right now I’m blogging live from Madison, WI. I think it looks a lot like Ohio, except that everyone here exercises and spends lots of time outdoors. I don’t think I was ever so glad to be off an airplane as I was yesterday! Mark found that if I flew out of and into non-local airports we could save some money and also get me a non-stop flight. This seemed like a great idea, since although this was going to be Menininho’s 4th flight, it was my first time traveling alone with him.

We made it through the airport easily (thanks to Mark helping me with the luggage) and quickly. TSA sure doesn’t make it easy to get an infant through security alone (dismantling the stroller/carseat contraption is tricky one handed; teething babies can and will eat your boarding pass!), but there was a very nice lady behind me who helped me, and a great TSA agent who made sure the stroller was OK. Thank you, thank you!!! They made my morning a lot easier 🙂

Now, I’d read a lot of articles, recent articles, about traveling with ‘infants in lap” and they all suggest asking the airline agent if there are spare seats so that the child’s car seat can be brought along. I have, in fact, asked this before on other flights and had there ever been empty seats, we would have been accommodated. So, I waited patiently at the desk for the gate agent to arrived, asked her how she was doing, explained my situation, and asked if there were any empty seats. Our conversation went as follows:

Agent: Oh sure, we have quite a few empty seats on this flight. Let me see your ticket. Oh! Well, you’ve been assigned to the row before the exit row, so we have to move you. [Apparently babies aren’t allowed to be within a row of an exit row…who knew?]
Me: Well, great! Could you just switch me to a row with an already empty seat then, so I can bring the car seat?
Agent: No. The stewardesses won’t like it if they see that.
Me: Huh? I don’t understand. There are empty seats on the plane. I already have to move. People bring car seats on the plane all the time. Please, I’d really appreciate it if you could allow me to move to a row that already has an empty seat.
Agent: You should have thought about that before. You should have bought a ticket for the baby. There are lots of empty seats, but I’m not going to let you use one. Lap babies should have to stay on your lap.

CLEARLY this woman has never traveled alone with a teething 6 month old.

So, not only was I not allowed to bring the car seat on board or even just swap to a row with an already empty seat, I was put in the MIDDLE seat of two random MEN. I asked if I could at least have an aisle seat because I was going to be getting up frequently and also I have crazy long legs, but apparently seats were assigned ahead of time (I blame this on Orbtiz, which Mark said did not allow him to select a seat), and middle seats were the only ones left.

I really wish the agent had been made to sit next to me. I felt really bad for the two guys. I could tell the older man was put off by me breast feeding (I was wearing my snazzy cover, so it’s not like he could see anything) but Menininho had to eat, and I had to change his diaper twice during the flight. I needed to walk around more than that, but the man made SUCH a production out of letting me out to change the diaper that I didn’t dare trying walking Menininho around the plane. [This might be unpopular, but I’m going to say it. I feel like aisle seats should go first to those with kids, the pregnant, those with medical issues, and the really long-legged. Short, healthy, single people shouldn’t use them up!]

Anyhow, Menininho cried for at least half of the 4 hour flight. I tried everything to make him feel better, but he had a hard time going to sleep, even in his sling. I felt bad for him too 😦 I was really grateful to the man on the other side of me though. He was closer to my age and told me he had a 9 month old daughter at home. He entertained Menininho with funny faces for a little bit and even let him pull on his jersey.

Mom flew into the same airport at the same time, coming from helping Matt get settled in New Orleans, so she was able to meet Menininho and me at the gate. We are SOOOOO happy to be visiting her and Gabriella!

Tomorrow’s mission: Buy a new nursing bra. This is going to border on TMI, but I wish someone had told me. Do NOT buy a “low cut” nursing bra, no matter how cute it may make look at the store. Also, do not fly when wearing a new bra for the first time, before you’ve had a chance to try it out. When you’re wearing that low cut bra and it’s feeding time, all of a sudden you won’t be in that bra anymore if you know what I mean, and it’s reeeeaaally awkward.

In the next few days: Post about playgroup and the last in the My Life With Marfan series


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The 3 Cs

We just got back from a whirlwind weekend in 3 of Ohio’s Cs: Columbus, Cumberland, and Cleveland. I’m still in awe of how much we managed to squeeze in. Menininho was beyond a champ! I just wished we’d had more time to see people.

We got in Friday evening. I’m convinced that there are 2 keys to an easy flight with an infant: a Boppy and a sling.  Menininho loved laying on the Boppy in my lap, which freed up my hands some. When he was ready for a nap, I just rocked him to sleep in the sling and then I could nap, too, since he wasn’t going anywhere.

It took forever to get our rental car (the company was out of small cars, even though that’s what we ordered, so they gave us a free “upgrade”: a jeep SUV. PERFECT for our cross-state roadtrip…not.) We met my brother Matt and his girlfriend, Deanna, at Polaris for dinner, then hung out at his apartment for a bit. It’s the last time I see Matt for a long time…he’s moving to New Orleans in a few weeks 😦

Sat. morning Menininho and I had brunch with two of my girlfriends from grad school. To those of you in Columbus: I really recommend Vic’s Cafe on W. 5th street!   Then, it was off to Cumberland for Chris and Erica’s wedding!

Chris and I have been friends since freshman year of high school. He and I were both in the percussion section. Freshman year we were part of a group of guys (I was the only girl) who would get to band early to play euchre. I’ve always been able to count on Chris. He even drove down from Ashland to come to Dad’s funeral. Every year we still get together at my place on New Year’s Eve with a couple of other guys from HS. I first met Erica at one of these parties, and I liked her right away. She is absolutely perfect for Chris and it just made my week that I was able to be at their wedding.

We left the reception a little early to make it to Cleveland at a reasonable hour.  Menininho slept great and we were at Case early in the morning Sunday for Mark’s graduation. He had left the tickets for the Commencement ceremony (which is separate from the diploma ceremony) at home, so I needed to walk across campus to get spare tickets from one of my girlfriends. However, I ran into a little problem.

See, thanks to my pregnancy, I don’t quite fit into my dress shoes anymore. I’ve been living in my black flip flops. Old Navy flip flops really are the best. They’re cheap and form to my feet. I was just thinking the other day though, that I’ve had these for almost 2 years and maybe I should get new ones. Turns out I shouldn’t have procrastinated so much. Partway across campus my left shoe broke. Beyond repair. Mark ended up taking off one of his dress socks and putting it on my foot so I wouldn’t need to walk all the way across campus barefoot in the freezing cold. Fortunately for me, the bookstore had opened at 8 for all those graduates who had procrastinated getting their robes, and they had one pair of flip flops left in just one size smaller than mine. Whew!

The graduation ceremony was really nice. Menininho and I got to walk across the stage with Mark.

It was a great trip! Hopefully we’ll be back (longer!) for Thanksgiving 🙂

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