A healing arm

We are now past the 5 week mark for when Sophie's wrist was fractured.  We are impatiently waiting to be able to remove her splint for good.  She had the cast removed a couple weeks ago and has been wearing a splint 24/7 while it heals.  It is nice that we can remove the splint to bathe her arm and keep the skin healthy.

Sophie doesn't seem to bothered by the splint anymore but I know we will have weeks of physio to get her arm back into it's pre-break condition.

Her new splint..

About a week to go then we will have some new x-rays and hopefully we can ditch the splint in time for swimming season!

Fractured

Sophie had some swelling on the back of her hand two days ago and was having some pain when we touched it but otherwise seemed fine.  It was a tiny bit red but wasn't bruised so we kept an eye on it but were puzzled by it.  After school yesterday it was more puffy so I decided to take her to be seen by the doctor.  So we went straight to the urgent care centre that is a couple blocks away.  I was afraid that she had some kind of infection under the skin or something like that.  We were sent for x-rays and to my shock we found out that Sophie has a fractured wrist.  I was not expecting it to be that because there is no bruising and she hasn't been complaining other than when we touched her hand.  We have no idea how she broke it and unfortunately probably never will.  She is such a strong little girl and I hate that she got hurt and wasn't able to tell us and can't tell us how it happened or when it happened.  She hasn't had any crying or upset periods with us so we really don't know if it hurts when not being touched or not.

She has a cast which covers the fingers to the elbow on one side and it is all wrapped tightly from top to bottom.  When I picked her up from school today all of her classmates had signed it.  I am sure she had a tale to tell them today!  She has such great friends to help her get through this.

We are feeling so guilty that we weren't able to keep her safe and we keep trying to think of how this could have happened.  We know that she most likely has more brittle bones than most because she is non-ambulatory but we hate that this has happened to her.  She was finally feeling healthy and just finished her latest round of antibiotics for a double pneumonia two days before, she has had such a rough winter health wise. I hope that she heals quickly and my girl never has to go through something like this again. :(

A birthday celebration

The day after Sophie's birthday we took a chance and headed out for a few hours to go bowling.  We had a little Sophie celebration with my family and it was more than enough to keep Sophie happy and wear her out for bedtime.

Sophie enjoys bowling even though it is loud with music blaring and lots of people around.  We went to glow bowling which adds a fun touch for the kids.  Lucas and Zoe were amazing bowling coaches/helpers for Sophie.  Although Sophie was often more interested in the little girls bowling in the lane next to us lol.

Game. On.

Lucas, my super competitive boy, ended the game with tears when he realized that Jason and I were going to beat him.  Even though I explained we had 30 years more experience than him it didn't help one bit.  He pouted his way home.  What can you do.

All was forgiven after pizza and cake arrived and Sophie was in her element having Happy Birthday sung to her yet again.  It is her favourite song after all.

I think 8 is going to be a great year.

8 Years

Happy Birthday to my sweet eight year old girl!!!

Sophie was healthy again a few days after we arrived home from hospital but only a week later she started showing signs of illness again.  She is now dealing with fevers and another ear infection again that she is on antibiotics for.   Her chest is sounding like crap so we are keeping a good eye on her.  She just had pneumonia when we were in Florida in February, so I really hope she isn't heading that way again.  Hopefully the antibiotics keep that at bay.

Today is Sophie's eighth birthday!  We had planned to have a small family party but we put that on hold until she is feeling better.  Carbon copy of last year, we had to postpone her party with her school friends when she was just too ill to be up and about.  I am hoping that Sophie will be a bit better tomorrow but today we had a little cake and blew out the candles with her after singing happy birthday.  She was totally happy when she received a number of happy birthday phone calls so all is not lost.  We gave Sophie the movie Frozen and she watched most of it, she loved the singing and it was fun to see her watching her first big girl movie!

Sophie usually keeps smiling through good days and bad, she is such an amazing little girl with so much love and happiness in her heart.  Every day she makes this world a little brighter.

Too sick for home

At the beginning of March Sophie caught a cold and within a few days wasn't doing well at all.  We took her to her paediatrician when she developed a high fever and he checked her out but at that point it seemed to be all viral and we would have to wait it out.  

Only two short days later we were in the ER after 48 hours of crying and moaning and an inconsolable girl. We were giving her Advil and Tylenol around the clock and it wasn't touching her pain.  We knew she had gone down hill very quickly so off we went to the ER first thing in the morning.  We knew that her heart rate had been very high for a number of days, we found out she now had a double ear infection, sinus infection, UTI and some other infection going on, they suspected she was going septic.  So with super high white blood cell counts and a heartrate in the 160's she was admitted right away.  Sophie used to be regularly tachycardic, in the 220's + when she was a baby, but this was not her norm anymore.   

We had hoped to come home with IV antibiotics like we had in the summer with her bad pneumonia but they weren't willing to send her home and it was the right decision in the end.  So we waited for a bed up in the unit.  Her ear infection was so bad that her eardrum burst while we were still in the ER.  I think that actually caused her some relief from the pain but it was shocking it was that bad when she had no sign of an ear infection only two days before.  When Sophie gets sick she loves to do it in style.  We spent four days inpatient and her fevers and heart rate weren't more under control until the end of the third day.  She had been on two IV antibiotics to kill the infection and she was finally smiling the day we were able to go home.  

I have stayed inpatient with Lucas twice in the new Children's hospital here but not with Sophie before.  She has always been in the PICU when here over the last few years if not just in the ER.  The new hospital is go great and our nurses were awesome.  One of the nurses had cared for Sophie in the community when she was a baby so it was so nice to have her on days for two of our four days.

It was so nice to come home and try to get back to a bit of normal.  Jason and Lucas were in Florida for three of the four days that Sophie was in hospital so it wasn't great timing but we got through it with help from our moms.  I am hoping that is our last inpatient adventure for a long while.

Told her we were going home

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!