Surviving a Special Needs Vacation – with a Smile!

Vacationing with a family is loads of fun!  Right?  Otherwise, why would we put ourselves through it?  But having a successful vacation also requires a lot of work and planning.

It was important to us to take a trip as a family this summer.  We bounced around from idea to idea, trying to land on a low stress, but high fun option.  We eventually settled on a hotel with a water park within about a 6 hour drive.  We would only be 3 hours from our children’s hospital, (does that make us smart or paranoid?), but far enough from home to qualify as a getaway.

Here are a few things I learned along the way:

1) Pack heavy on the things that matter.  Plenty of things can be purchased when you are there.  But if you normally need familiar blankets, propping pillows, and a noise machine to help your kids sleep…bring them all!  We brought a lot of familiar items from home,but a softball sized ceiling projector didn’t make the cut.  I regretted that decision around 2:00 am every night when Nolan beckoned for attention.  I would pack like a sardine on to the bottom bunk with the twins and their boppy pillows, stare at the boring wooden base of the upper bunk, and realize maybe we had room for one or two more items after all.  Nolan agreed.

2) Don’t be afraid to ask for accommodations.  When I made our reservations, I asked for an accessible location.  I clarified that we didn’t need an accessible shower/room yet, but that navigating with the boys (to and from the car, around the facility, etc) required two strollers.  They kindly put us in a room on the sidewalk level, very near the water park.  This quite possibly made the trip, and helped us avoid rolling the boys across hot parking lots in 90+ degree heat.    It made it easier to get around, and even allowed us to split up.  Given the short walk, one adult could handle both strollers while the other helped big brother get in a little more fun in the sun.

3) Do a lot of planning and research, but be willing to throw plans out the window.  I spent a lot of time looking for local restaurants, activities, and even rainy day options.  We barely touched that list, and we were fine with it.  At the end of the day, the goal was fun, and what that looked like didn’t matter.  The twins over heat easy, and tire easy.  And 4-year-old big brother was playing hard all day.  So when the evenings turned in to air-conditioned pizza parties in our PJs, rather than a tour of the town – that received 10 thumbs up.

4) Medical needs don’t take a vacation.  Make sure you set yourself up well to stick with the medical routine.  We had our entire list of daily needs, including a scale, dish pan and soap, bottles, multiple sizes of medicinal syringes, safely packed meds, pill crusher, feeding bags, chargers for the feeding pumps, etc.   New to us this time…we also had to pack their respiratory therapy needs.  While it would have saved space to leave that at home, and saved time teach day to skip the routine, it was very important that their well-being remain a top priority.  So no matter the daily plans, their health routine remained part of the mix.

5) Above all else, pack your sense of humor.  Mine came in handy numerous times.  Like when both twins had diaper blowouts for the first time in months, before we even made it half way there. And while I could reach 47 of our bags, I couldn’t get to a complete change of clothes (rookie mistake) so they each had to lose a layer.  Or when our box of ketogenic formula (you can’t pick this up in the store) had a lot of spoiled cartons in the bottom of their box, and I had to improvise on our last day with a little ketogenic calculator math/scale, and some baby food and oils.

FAQ:

What if I forgot my sense of humor at home?  TURNAROUND NOW!

What if my spouse doesn’t have a sense of humor?  Leave them at home.

What if I don’t have a sense of humor? Lord help you.  Try a trip to Walmart with your entire family, no list, and only come out with two items.  You will fail, but you’ll either learn to laugh more, or you’ll cancel your vacation because you don’t want to spend any more time with them.

 

I hope you found this helpful!  Good luck on your adventures, and here are a few photos of ours!

image

Landon and Karson were distracted by the snow cone!

Landon and Karson were distracted by the snow cone!

Nolan

Nolan

Landon

Landon

Keto friendly sun screen!

Keto friendly sun screen!

Nolan's splash!

Nolan’s splash!

Nolan loved the lazy river!

Nolan loved the lazy river!

Landon and mommy could have done this all day...

Landon and mommy could have done this all day…

 

Landon enjoying his turn

Landon enjoying his turn

 

Soaking up some shade

Soaking up some shade

Nolan - Spidey

Nolan – Spidey

Landon's toothy grin

Landon’s toothy grin

Pat A Cake Break...

Pat A Cake Break…

One wild and crazy guy!

One wild and crazy guy!

Indoor Putt Putt

Indoor Putt Putt

Mickey day!

Mickey day!

Every day we vi bra ting.

Every day we vi bra ting.

No use crying over spiled milk!

No use crying over spilled milk!

My boys...

My boys…

 

Equipment: Standers and Hi Lo Seating

The boys are growing fond of and are ready to show off…their new equipment!

At our early intervention 6 month appointment, we discussed goals, expectations, and needs.  At the top of my list was positioning equipment.  I had researched online, and polled our facebook friends in the Lissencephaly communities to get some ideas.  By our first meeting, I had printed a pamphlet for Leckey Squiggles equipment.  After further discussion, a follow up appointment was scheduled with an equipment specialist.

The equipment specialist helped us balance current needs with long term use, and we landed on the following:

1) Standers:  These devices help promote weight bearing in kids who might otherwise be unable to get upright.  The simple act of standing, which we take for granted, has been shown to improve bone health, motor function, reduce spasticity, tone and spasms.  It can even aid in digestion, and lung health.

2) Hi Low Seating: Seating is crucial.  The boys need comprehensive support, and if not being cuddled, they are often stretched out on the floor, or propped on a boppy pillow.  Having seating that provides adequate support will allow them to be upright, social, more able to look around, and even free to use their arms.  The hi low function allows us to lower them to an age appropriate height, or raise them to a dinner table/feeding height.

The collar you see in some photos is a Hensinger collar.  We’re mostly using it with Landon when he is in a more upright position.  It assist the boys with neck control, as being upright very long, even with support behind their head, is hard work!  This prevents “crashing” their heads forward.

So far…they LOVE them!  Nolan’s seat needed adjusted, so we’re working with 3 out of 4 items temporarily.  But I am thrilled with how well these have been incorporated in to daily use.  Here are some photos I hope you enjoy, and a video that I certainly love.

Equipment Rolling In!  Literally!

Equipment Rolling In! Literally!

Buddies!

Buddies!

Standing is fun!

Standing is fun!

We lean the stander back to put the boys in...

We lean the stander back to put the boys in…

Then secure them with straps and Velcro...

Then secure them with straps and Velcro…

Then tilt them upright!

Then tilt them upright!

Hard work work!

The most adorable face off…

And here’s Landon working on grasping and lifting.  This was nearly impossible before, because we had to support them in all directions.  And I sure couldn’t have had enough free hands to catch it on video!

Roots of Stigma, Seeds of Hope

Medical Marijuana.  I’m just going to throw the words out there now, because for some reason they cause discomfort.  And I think “uncomfortable” is a good place to start.  As I’m watching “Growing Hope” on NBC tonight, I’m having a hard time staying quiet about the topic.

It is fascinating to me, that a treatment that has shown such marked potential, gets so much push back.  When getting rid of seizures is notoriously difficult, and in some cases considered impossible, this drug with so much potential is being squashed by legislation.

I’m not here to debate its efficacy, or defend its long-term use, or say that I know for a fact it will work.  I’m here to complain that I CAN’T speak to those things because we’ve yet to have the chance to find out.   I can tell you that Phenobarbital knocked my boys out so badly that they lost the ability to breathe or eat on their own, and we spent weeks in the NICU trying to figure out what cocktail of drugs would allow them to wake up enough to go home using their max potential.  I can tell you that while ACTH worked nicely during the treatment, coming off of it led to an immunity crash that Landon almost didn’t survive.  I can tell you tomorrow we’re going to a vision appointment because being on Sabril requires routine checkups to ensure there hasn’t been permanent vision loss.  I can tell you that despite being on 4 seizure treatments at the time, Landon had a seizure in the night that almost led to his death just a few short weeks ago.  I could list all of the potential side effects we’ve exposed the boys to in the name of seizure treatment, but you’ll quit reading long before I reach the end.  Yet for some reason, when the word marijuana is involved, people get uncomfortable.  Ironically, the more successful seizure treatment strains are made from plants that are so low in THC, they are considered hemp, and don’t even produce the “high” that is causing a lot of the social stigma.  But honestly, considering the extreme and known side effects of currently approved and socially accepted drugs, I find that irrelevant.  We’ve known for years there is potential, yet it has been socially downgraded, and politically ignored for far too long.

I’ve met a lot of wonderful people in our journey with the boys.  Everyone’s story is different.  But when it comes to seizures, there is a common thread.  Despite countless drugs, steroids, diets, and surgeries, very few find success.  In the end, the seizures almost always win the war.  And while there is no guarantee medical marijuana, hemp plants, and CBD oils will change that in every circumstance, I can’t for the life of me figure out why someone in a suit who is unaffected by it says the medical community shouldn’t give it a fair shot.

For now, I just ask that when you hear about hemp and marijuana plants, or plant-based CBD oils being used as seizure treatments, that you stop picturing Jay and Silent Bob, and start picturing kids like Landon and Nolan.

And somewhere out there, if you’re someone in power who could help advocate for the research and legislation needed, and you’re still sleeping on it, understand this:  I go to bed every night praying this isn’t the night a seizure quietly wins.  So while you’re “sleeping on it”, moms like me aren’t getting any rest.

Realm of Caring educates people about cannabis oil and supports families. http://theroc.us/

These are just two of the faces you should picture when you wonder why medical marijuana has a place in the medical community.

These are just two of the faces you should picture when you wonder why medical marijuana has a place in the medical community.