The Backiel’s in Boca!

“Parents don’t really go on vacation. They just take care of their kids in a different city.”

YUP. Ain’t that the truth? But, taking care of Madison in the warmth of Florida was a hell of a nice change lol! Last week the three of us ventured out for our first family vacation and first time flying with our queen! John and I were nervous wrecks about it. We went back and forth about whether or not to actually go for months. Madison is just so complex it’s scary to break out of our comfort zone with her, but we also don’t want to center our life around her disabilities either. She deserves to see the world just like anybody else.

And so we did it. We flew to Florida for the week, and it was wonderful. We are blessed to have a family friend who owns a condo in Boca who graciously extended us his place, and it was perfect. We weren’t crammed in a hotel room with Maddie and all her stuff, but had plenty of space, rooms, full kitchen, pool, and valet parking at our disposal which helped make things so much easier. Of course our trip wasn’t totally smooth sailing though. In fact, after arriving as I unpacked our things I noticed that one of Madison’s medications had leaked. (And I mean leaked so bad there was not enough left for the week.) Enter panic mode!

The medication that leaked comes with a bottle adaptor that allows me to place the syringe directly into the bottle to draw up the liquid. Although it was closed, I guess all the bumps of travel caused it to get loose enough to leak. A huge problem, obviously. What made the situation worse was that this particular med is specially compounded and not something that can be filled at any pharmacy. Shit, right? We called our pharmacist, explained the situation, and agreed the best course of action would be for him to make us another vial and ship it to us in Florida. We had enough of the med for a few days, and at least I knew we would get what we needed rather than hoping we could find a local pharmacy that compounds medications and could do it for us. It all worked out and our lovely pharmacist overnighted us a new bottle, with a regular cap to ensure no spillage!

So yeah, first crisis averted and now back to the good stuff! It was 85 degrees and sunny literally every day of the trip, and man did I love that. Anyone that knows me knows I loooove laying out in the sun, especially at the beach. I find nothing more relaxing. And the last 16 months have been quite the opposite so it was sooo pleasant to have a week with John and Madison with no appointments, no therapies, no work, just us. Although if I’m being honest, I definitely underestimated how little we’d actually be able to do. Madison is so hard to get on an actual schedule because she still has issues with alertness and has still been more difficult to get on the bottle. Whereas in the past John and I would be up and at the beach by 9 am, most days we weren’t out of the house until almost noon with Madison. Time just really gets away from you when you have kids! Especially when you have to make sure meds and meals are taken care of.

So we played it pretty easy for the most part! Pool by day, a nice early dinner out, and back to the condo by 8 for nighttime meds and bed time. The pool was glorious. John even gave me some time to lounge ALONE during our week, and man let me tell you, it was magnificent. At home my husband likes to run to relieve stress and get out for a bit, but as sad as it sounds, I don’t really have a hobby like that. If I wanted to get out, I’d probably go shopping and that sort of hobby can get expensive quick lol. But laying out by the pool was basically my “run.” It was my way of relieving stress and just getting out of my own head for a while. It was everything and much, much needed. Being thrown into this medical world so unexpectedly has left me little time to do things for myself. My days revolve around Madison and her care, and that’s ok. But everyone needs a breather now and then, and my hour of alone time at the pool was pure mom bliss. (So thanks JB!)

We also ventured out to the beach which was super peaceful and so much less crowded than NJ during the summer. However, bump number 2 occurred not too long after arriving. Madison was napping when we first got to the beach, so she slept in the tent with a fan while John and I sat just outside of it. She woke up for lunch and was pretty fussy. We were pretty cautious of her not overheating because she has issues with temperature regulation, but she had been in the breezy tent with a fan all day. I took her in the ocean to cool down, which helped, but after she finished eating she still seemed pretty upset. We decided to pack up and head home which wound up being the right decision. By the time we got to the car she was pretty hysterical and working herself up to the point that I was nervous about seizure activity. Her cheeks were bright red and she felt extremely hot. I gave Maddie her dose of hydrocortisone and then extra once we got home & she cooled and calmed down almost immediately, thank God.

If you read my last post about our mishap with the EEG, you know Madison can work herself up pretty bad which sets off a mini adrenal crash in her where her body gets so stressed it needs an increase in hydrocortisone in order to regulate. I guess the heat just got to be too much for her and caused her to just freak out. I reached out to some other moms of Pan-Hypo-Pit kids, and a lot also noted that warm weather can be a trigger for their kids too. Although she was fine at the beach over the summer, going forward we’ll be stress dosing Madison’s hydrocortisone for warm temperatures to try and prevent an issue.

A positive of the trip was that we wound up being able to enjoy dinner out every night. We tend not to venture out to restaurants with Madison much at home because it interferes with her feeding schedule and her seizures can be loud and intense sometimes. She also can’t sit in a restaurant high chair because she needs more support, so logistics can also be tricky. But, because the weather was so nice in Florida, we were able to dine outside at most places and keep Maddie in her stroller which was nice! Our family friend also treated us to an extremely generous nice dinner out at a steak and lobster house that was delicious and something we definitely would not have treated ourselves too otherwise.

Madison was an angel and gave mom and dad a lot of nice date nights which we thoroughly enjoyed. Being able to dine early also made it easy for us to get in and out more quickly and back in time for meds and a night bottle for Madison. Our favorite restaurants were Louie Bossi’s (Italian. And I’m talking homemade pasta, bread, & gelato kind of Italian. YUM), Chops Lobster Bar (steak & seafood), and JB’s on the Beach (casual place right on the beach with live music- we looove places like this!). I highly recommend all of them if you’re ever in the Boca Raton area. We also visited the Barrel of Monks brewery one night which was super fun. I tend to hate a lot of beers at breweries because I’m not into anything hoppy, but this brewery had a lot of wheat and Belgian style beers which are my fave. They also feature different food trucks each night, so we got to enjoy taco night, and honestly they were some of the best food truck tacos I’ve ever had. I may or may not have been thinking about them ever since we got home lol. DELISH.

Normally on vacation John and I would get that good deep vacation sleep. This time, not so much. Just like at home, there is no sleeping in or sleeping through the night with miss Maddie. In fact, we had a few nights where she woke up around 2-3 AM and never went back to sleep. She was crying, grunting, and arching her back like crazy. It was something out of character for her and we weren’t sure if it was seizure related, neuro related, or her simply just being over not sleeping in her own bed. And to be honest, we’re still not sure. The episodes were part of the reason I touch based with neuro this last Monday, leading to the EEG from hell. But I digress! And at least on vacation after a sleepless night we could relax by the pool the next day, whereas at home there is no time for relaxation because we have too many other appointments going on.

All in all, aside from a few mishaps, our vacation was just what we needed. The weather was perfect and spending the week together just us 3 is something we haven’t done since Madison was born, so it was more than special. I was pleasantly surprised with how well behaved Madison was and it’s something we’d definitely do again in the future! It was the perfect balance of getting away without being too far or too crazy. I also got to match my babe in a few outfits which I may have loved, but she was not into. Of course she takes nice pics with daddy all the time, but the moment I put us in matching clothes it’s crank pot city lol. Little does she know I’ll be forcing her (and any of my future children) into matching me until the end of the time. Sorry not sorry kids! And although once we got home our week kind of got off track (an EEG and snow storm?!), I’m looking forward to next week being Thanksgiving since we’ll get some more relaxing family time! Have any recommendations of where we should attempt to travel next? Let me know!

*And special shout out to our families and family friend Steve for making this vacation possible! The condo, dog sitting, and dropping us off/picking us up at the airport took away a lot of stress we’d otherwise have worried about. We love you guys!

Have a great weekend everyone!



1 Comment

  1. Katie Karkus
    November 19, 2018

    Love you all.


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