10 Years Old!

I can hardly believe it as I say it.  Sophie is 10 years old today!


What a beautiful, strong, happy, determined 10 year old she is too!  She is already giving us the tween attitude and I love every bit of it.  I can hardly help but laugh when she gives us such sass, she knows what she wants and man does she let us know!

10th birthday

10 years flew by and it seems almost impossible that it is true!  At the same time, so many of our life experiences in her first few years seemed to go in slow motion and I thought we would never get back to real life speed.  Such is the life of a girl with complex medical needs.  We have so much to be thankful for, of course the biggest thing is that Sophie is here with us celebrating this milestone birthday.

1 day old

I didn't meet Sophie in person until she was 7 days old.  It was the hardest 7 days being separated from her, not being there for her as I longed to be.  I was the first to hold her though when she was 8 days old and it was the best feeling in the world and we both knew that we were meant to be together and everything seemed ok. 


Some days Sophie still just needs her mom.  She yells and cries until I am there to hold her, no one else can calm her and I am so happy that I can do that for her.  She is a daddy's girl but sometimes mom is just what you need.

8 days old

10th birthday

This year we were able to really celebrate Sophie's 10th year by being granted a dream trip by a wish granting organization, the Sunshine Foundation.  It was the most magical week for our entire family and it just came at the most perfect time.  We made memories like never before and Sophie just soaked it all up.


Sophie is the light of our lives, as is her brother Lucas and I am so excited to celebrate every birthday that is to come.  But this was a special one, a birthday we really didn't know if we would ever see and I know that we are so blessed to be here, all of us together.

Happy birthday my sweet Miss Sophie! xoxo

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. :(

Easter 2014

We had a pretty quiet Easter this year.  My parents were away and Sophie had pneumonia so we kind of laid low around home.  We had an egg hunt in the morning which is always a hit around here. Later we went for brunch with my niece and my sister.  The food was great and we were all stuffed full by the time we were done.

It was a beautiful sunny day and I was able to get the kids corralled long enough for a few photos!

Sophie's new transport chair

Sophie has her new Rodeo!  We were so excited for it to arrive, I was super impatient and was so happy when we received the call that it was in.  After some minor adjustments for her size we had it home.  Sophie has been using it now for just over 2 weeks and it has been working really well.

Sophie seems very comfortable in it, sometimes too comfy.  She has quickly found a way she likes to sit in it, one leg up in a funny yoga pose with her knee sticking out the side.  She does this each time she is in it, always the right leg up.

The harness/seatbelt system and special headrest add-on supports her head and torso well and the rigid seat with contouring we added has helped immensely to hold her in the chair properly.  Considering she had never been able to try this chair out before we ordered it, it functions very well.

We added a rain/sun canopy and a medical basket/tray for underneath for her feeding pump.  I still have to find a caribaner to hang the feeding bag from but otherwise we are good to go.  It rolls really nicely up into the back of the van so I haven't had to figure out how to collapse yet, but apparently it is fairly easy.  We chose a nice dark burgundy for the colour of the chair and I love it.

I hope this will provide her with many years of comfy touring on our many adventures.

A new ride is on its way

A few weeks ago, a short time after Sophie was released from hospital, we had a follow up seating appointment to make the final decisions about the transport chair we are ordering for Sophie.  We had decided on the Convaid Rodeo after the last appointment and now we had to figure out a size and exactly what attachments she needed.  Sophie was a worn out girl but she was so patient and let us configure everything around her.

Sophie needs a lot of support for her trunk so we needed the firm cushion insert that will keep her pelvis and back supported properly.  We didn't have a Rodeo to try out but an older model Cruiser worked fine in its place to figure out sizes.  Sophie's Oma was able to help me make some decisions at the appointment and Sophie loved showing her everything for the first time.

I am so impatient for her new chair to arrive but I am hopeful it won't be long!  Her old Bingo has worked for the last 5-6 years but it is definitely time for something new that fits this long lean string bean of mine!

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.

A Birthday party - take 2

When we had to cancel Sophie's birthday party in March because she was too sick, we were so sad for her.  We knew that Sophie would have loved having all her friends to our house for an afternoon of fun to celebrate her birthday.  After a month of waiting for her to get healthy and then a month to find the right date, it finally happened on the long weekend.  On Monday afternoon Sophie was able to celebrate her 7th birthday with her friends.  It was all kinds of awesome.

We had a birds and butterflies theme, so all the girls painted birdhouses which was a definite hit.

 

 Each of Sophie's friends helped her open her presents.  They were all very excited to show her what they had chosen for her.  Sophie received some amazing gifts and she has been having lots of fun playing with them and reading all her new books.  It isn't easy finding toys and gifts for Sophie, but each of these girls chose really special items for her.

 

 Sophie and all the girls had a blast running under the parachute.  There is something about a parachute that just exudes fun, I have not met a kid who doesn't love it.

Five of her friends from school were able to make it and they had so much fun.  I wish I could put a photo of the group of them but I haven't received permission to post the photos of two of the girls yet, so that will have to wait.

 

 It was such a great day and I know that Sophie felt the love that was showered on her by her friends.  She is truly a very lucky seven year old.