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.

Soccer and Alphie

Sophie received a soccer ball from Santa this year that is pretty awesome.  It talks and sings and is very responsive to the slightest movements.  That Santa sure does know how to pick them.  Sophie is loving playing soccer by kicking the ball off her foot rest and she has a grand time throwing me the ball by rolling it off of her lap.  She loves the interaction of the back and forth and you can tell she is very proud of her ability to move the ball herself.  Her gross motor skills are improving in leaps and bounds.

Sophie is getting a lot of therapy this year and I think it is really paying off.  She has joined a physical literacy program for children with epilepsy/neurological conditions and she is loving it.  Each Saturday she joins a volunteer for three hours along with other children and they have fun being active.  It is a government initiative with the epilepsy support centre and it has been great so far.

We are also lucky enough to have a recreation therapist coming to her school regularly to help improve the inclusion element of Sophie in gym class.  Sophie's EA has taken on the suggestions with much enthusiasm, unfortunately the teacher still doesn't include Sophie in gym class and to this point hasn't really shown any interest in learning ways that Sophie can be included in her class in the future.  Thankfully we have an amazing rec therapist that can teach Sophie's EA so it is the teachers' loss.  Right now they are trying to create an adapted badminton racket.  Awe.Some.

Sophie's fine motor skills are also forever changing and improving.  This is an Alphie robot toy my mom got her for Christmas 2012 and Sophie was not interested and didn't have the dexterity to do anything with it.  Just a year and a bit later and Sophie is fascinated by it and is trying very hard to push the small, fairly difficult buttons all by herself.  I always try to rotate around her toys so that she doesn't get bored and I am glad that I never gave up on this one.  It also is great for literacy and numbers depending on the card you choose.

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

Toys that have the touch

I am always on the hunt for toys that will work for Sophie.  Sophie's cerebral palsy makes it difficult for her to press little buttons but it is very hard to find toys that don't need that capability.  To find a toy with music and lights that is easily activated is a celebration in this house.

This past Christmas I came across a Leap Frog Touch Magic toy and I couldn't wait for Sophie to try it out. It just requires a very light swipe, very similar to the Ipad, to activate the music or instruments on the touch pad.  It doesn't captivate Sophie but it is definitely something she can do on her own which is fantastic.  I know that there are other versions as well, like the Learning Bus and Counting Train which I hope to find at some point for her. We have the Ocean Music School version and luckily it is a very reasonably priced toy, I paid about $15 on sale.

Sophie does very well swiping the different areas but I wish that the toy didn't turn off so fast with inactivity.  Sometimes it takes a while for Sophie to get into it and it has already turned off.  Kind of frustrating.  Other than that I love it and it is so nice to have something fun and musical that is new for her to work on her fine and gross motor skills with.

More recently I came across a toy on clearance that I had been searching for at Christmas and couldn't find anywhere.  So bonus that I found it super cheap ($7) and it has been another one that is great for her fine motor skills.

 This toy is a My First Crayola Touch Lights, it has a mess free gel pad with all different glow light colours as well as many different musical songs.  It is a really neat sensory experience for Sophie, the gel pad feels cool under her fingers and the lights and music keep her engaged.  Each time the button is pressed it changes song and colour, the button is large so I am hoping over time Sophie will learn to hit it.

I am always keeping my eyes peeled for new ideas and these ones were a hit!