Travelling with a child who has complex special needs

Ever since Sophie was a baby we have tried our best to get out and travel as much as we can.  But it took some time for us to feel comfortable enough with our plans to get Sophie on an airplane and take an extended vacation far away from home.

                      Sophie's first time on an airplane at almost six years old.

When you have a child that has complex medical needs you can never plan enough!  There are ways to make your trip as enjoyable as possible though by preparing for the worst (but hoping for the best!).

Sometimes I get a little over confident about Sophie's medical status and it always seems to be when we are away from home that she throws us for a loop and has a medical emergency.  I think this is true for many kids like Sophie because when you are traveling they get tired,  you aren't in your regular surroundings and so they are often overstimulated by all the excitement of being somewhere new or different.

We have done some long distance traveling to Florida with Sophie for the last 3 years and I have learned something new each and every year, what works and what doesn't and some tricks to make things go smoother.  Maybe they can help you too!

At the airport

-  Talk to the airline and the airport in advance.  Let them know that you will be flying with a child who has extra needs which will affect checkin and security checks.  We were given the name of a supervisor who met us when we arrived at security who helped us through the process of having everything scanned (including Sophie and her wheelchair).  We travel with a lot of liquid medicine including narcotics, formula, water and machines, we had a feeding pump, suction machine, O2 Sat monitor and nebulizer, wheelchair, car seat.  Last year we also had her gait trainer with us.  Having a security line just for us helped us not feel so pressured to rush through so we weren't holding other travelers up.

-Check the airline and airport websites in advance.  There is often an accessibility section like this.  By researching this I discovered that parking at the adjacent covered parking is FREE with a disabled parking placard at the airport we use!  What an amazing service.  We were very thankful for the close parking with all the stuff we were hauling too.  We paid $200 for the 10 day stay there last year and it could have been free if I had done some reading then.

- Many airlines will allow you to check a medical bag for free.  This saved us $25 each way for this extra suitcase that we had to bring filled with supplies like extra feeding bags, syringes and everything else we use daily for Sophie.  We also sent medical items to our destination in advance each year with a family member who was driving (my in-laws are snowbirds).   It would have been very difficult to have everything we needed in our suitcases, Sophie's formula alone would fill a suitcase for a 10 day stay.  So if there is a way to send items separately and in advance it is really helpful.

-Ask for assistance boarding the plane if you need it.  We have to have a fair bit of stuff with us as carry on luggage because we can't risk medicines being lost and I need regular things like feeds, diapers, receiving blankets, changes of clothes, etc. as well as the car seat.  The list seems to be endless.  Sophie has to be carried on to the plane so that leaves Lucas and I hauling everything.  The airline often has someone that can assist you.  Ask as soon as the staff arrive at the counter, you can also let them know you need to pre-board.  It is a lifesaver when I am trying to install a car seat and get everyone settled.

Visiting large attractions and theme parks

-When we visited the theme parks or other attractions (we have been to Busch Gardens, Legoland and Universal Studios) we asked about special ticket pricing for caregivers or for Sophie herself.  Some provided free or half price entrance fees for the caregiver and/or half off for Sophie.  We also made sure to get wheelchair tags for Sophie which allowed us to use wheelchair entrances to shows and things like train rides.

-First Aid stations in theme parks or major attractions are a lifesaver.  Once your child is too big to fit on the little wall mounted baby change stations it is very difficult to find a place to change them if you don't have your van handy.  The first aid stations are the place to be!  They have rooms with stretchers to lay them on for diaper changes and they have sinks and clean areas to prepare tube feeds or meds.  The staff are always super accommodating and it really made the days possible for us when away from home/hotel.  They can also just be a nice air conditioned space to cool off if your child is overheating and stretch when time out of the wheelchair is needed.

Travel in general

-We set up alot of services in advance.  We rented a mechanical hospital bed and had it delivered before we arrived.  That made it so that we had a place for Sophie to be safe and relax after a long journey.  We also had night nursing all set up.  We arranged the initial intake for the afternoon so we could work out any problems before the nurse was scheduled to arrive and we were wanting to hit the hay.

-We were unable to find the kind of youth diapers Sophie uses in any of the home health stores.  So, I turned to the internet and had some delivered to the hotel from a company that was recommended to me.  The company delivered for free and provided excellent customer service, but the hotel at Universal charged a small fee.  However, at the time it was worth it to not have to drive around anymore searching for them.

-For those of you that live in Ontario, the Ontario Federation for Cerebral Palsy has a wonderful program that provides assistance for vacations and other activities.  It used to be two programs which have now merged to be called the Activity funding program.  It is a fantastic non-profit and I highly encourage anyone with CP in Ontario to become a member and anyone can support this worthy cause through donations.

These are just a few of the things that have helped our family have a great vacation when far away from home.  Sophie really put us to the test this trip because she ended up in hospital with pneumonia the night before we were flying out to Florida.  We were able to have some back up medicines that we needed to put into use while there because the antibiotics didn't cut it.  Anticipating all the different possibilities of things that could go wrong really ended up helping us get Sophie healthier faster and we were able to deal with it ourselves.  We made sure to carry her seizure rescue meds with us at all times just in case, and she did in fact have two seizures.  One while at the hotel and one at her grandparents home, but we were prepared and she was ok.  I hadn't planned on taking the suction machine but we did use it so it was worth the extra effort.  The peace of mind that came from knowing that we were prepared for being thrown a Sophie curve ball meant we could enjoy our vacation that much more.

Florida, we made it.

My Sophie always has had a knack for getting sick right when a holiday was coming, or a vacation or special day.  I don't know how she does it but it is quite amazing.  It was no different a few weeks ago when she came down with a cold and then, bam, the day before we were leaving for Florida she develops full on pneumonia.

Recuperating with Nana

I think I was in denial at first but I really did know that I had to take her in to be seen.  Her sats were really bad and her heartrate was even worse, all declining overnight.  So I took her to our local Urgent Care centre first thing in the morning.  Of course it didn't take long for them to diagnose pneumonia with the assistance of x-rays and I thought we would be on our way with some antibiotics.  The Dr. had other plans and let me know that she couldn't go home and they were ambulancing her to Children's Hospital.

Now, she wasn't looking great, but she certainly wasn't the worst I have seen her so I was taken off guard when all this started to unfold.  But it reminded me that Sophie is a complex little girl and many doctors just aren't comfortable or experienced enough with kids like her to have her in their care.

So off she went with the paramedics and I met them at Children's and we got everything sorted.  We knew the doctor that was on that day from previous visits and he got her sorted with antibiotics and other orders.  They would have kept her longer because of her heartrate (in the 150's) but they understood that we were leaving to catch a plane that night and we had a Dr. and night nursing set up for once we arrived.

Sophie did really well on the trip down south and was a real trooper.  She was sick for the majority of our 10 day trip but she was certainly able to enjoy her time in the warm weather regardless.  We had to add in a few breathing meds to help her out and she had a couple seizures but all in all she did amazing.

We had planned a trip to Universal in the middle of our Florida stay, which unfortunately wasn't great because she was so sick.  But we got through it, we had a wonderfully caring night nurse there and Sophie got to sleep in her first hotel!  All the staff at Universal were very friendly and very accommodating for us.

Lucas loved Universal, there was so much to do and see.  Of course this also meant it was very overstimulating and overwhelming for Sophie, but we did our best to make it enjoyable for her as well.  This really wasn't the best side trip for Sophie because it was just too much.  One day would have been just right for her instead of three.

Sophie loved the Dr.Seuss land and really enjoyed the show they put on.  All the characters had their photos taken with her after and were really sweet on her.  She got to ride the Suess carousel which I think she liked but it was hard to tell.  It was a lot of movement and sound for her and she was taking it all in, it may have been too overwhelming but we were just so happy we found a ride she could go on!  Sophie did not like Barney.  Enough said.

Our last day in Orlando was cold and a bit rainy so we didn't mind that that was the day we were heading out.  We had seen almost everything and had enjoyed two nice dinners by the hotel pool watching Little Rascals on the big screen one night which Lucas loved.  The Wizarding World of Harry Potter was amazing along with so many other parts of the two parks.  I am glad that we were able to go and experience it all as a family!

We were happy to get back to Nana and Opa's house and relax with them.  Sophie was finally feeling well the last three days of our trip and was able to enjoy it more.  She did have another seizure the last night we were in Florida but I am sure that was just out of exhaustion by that point.

I can hardly wait until next year when we are back to paradise again.  Even though this trip had it's challenges we still had an amazing time and it sure beats being sick in -30C weather!

January chills and thrills

This is the coldest January I can remember for most of my life.  When I lived in Montreal for a couple of years we regularly had days with -40C to -50C wind chill in the dead of winter but it isn't the norm here.  We had a record -26.5C at the beginning of the month and it is heading that way again it would seem.

Sophie has been having a great winter so far even though it has been so crazy cold and lots and lots of people have been sick in her school and in our community in general.  Influenza is quite rampant as well as gastro bugs and colds.  Then this weekend Sophie got sick with a cold.  She stayed home from school today and seems to be feeling better than yesterday.  She also had a seizure last week which may have been the start of this bug or it just could have been due to exhaustion.  She had been doing really well in the seizure department for a few months so I hope it was a one off.

We have been keeping busy inside with all the new toys from Christmas.  A week or so ago we had a glow dance party one night, Sophie and Lucas thought it was awesome.  We had on the music and pretty much every glow/light up object we own turned on and Sophie was up dancing in her HOPSA.

The photos are horrible because the kids were moving to the music and it would have totally ruined the effect to have the flash on.  So the photos are more to get the feeling of the night then to see it in any photographic glory.  :)

On the subject of photos, I am happy to report that I have some of my photos in one of the University galleries right now.  They are in a show as part of the photography club that I am a member of.  It is the debut show of our club and I have to say it is exciting even if not many people will see it.  I have been getting great feedback for the four photos I have up though and I am very proud of how they look!

Beach days are awesome when you have the right stuff

After the weekend we settled into our vacation, enjoying the fact that the days were sunny and we were all healthy.  Sophie only had one seizure this trip, it was long but we dealt with it.  We aren't sure why the sudden increase in seizures the last few weeks but we believe it is due to her gaining some weight  since the winter which means her doses may need some adjusting.

 

This trip was all about making things easy and fun for Sophie.  We brought more of her equipment to the cottage than we ever have so that she could go more places more easily.  That also meant it was easier for all of us.

 

When Sophie has her tumbleform to sit on at the beach it means I'm not having to hold her for an hour or more.  Having the Wike trailer with us meant that I could easily get her to the beach without struggling in the sand.  Her Kidwalk was with us too which meant Sophie got to have some exercise and walk around all on her own. 

 

 

Getting your hands dirty in the sand and discovering what is all around you is important for every child.  Sophie doesn't have to miss out on all of that because of her disabilities and we make a huge effort to include her in everything we do as long as she is healthy enough to do it.  Until she lets us know she isn't interested in something we assume she is.  That is how we learn isn't it, by being immersed in the life that is all around us.

 

 

Lucas photobombing like only he can.

And there is nothing like a summer's day at the beach.  It relaxes you and inspires you all at the same time.

Lucas and Zoe both thought it was fun to push Sophie in her new beach mobile.  The Wike rolls so easily on the sand they were able to push her on our adventures without any problem.

Showing your cousin a crayfish you found on the beach is one of those things that you make memories from to last a lifetime.  I hope Sophie, Zoe and Lucas gather up these days in their thoughts and keep them there for a very long time.  Since they are all related to my Nanny who had the longest memory of any human that ever lived I think we are good to go. :)