Monday, July 14, 2014

Some Posts Easier Than Others

I love writing posts about how great everyone is doing.  I love posting cute pictures of my girls.  But some days just suck and those posts are important too.  They let other parents know they are not alone in having sucky days.  They also allow me to vent/ express what is on my mind.  So here goes...

Some Days Just Suck

We were at the hospital all day (left here 9am, home at 6pm) for two appointments.  Zoe had to see her opthomologist and Ailsa had a nephrology appointment.  The outcome?

-Ailsa's kidney function is a little worse.  Which means the med she is on is not working.  Which means she needs more medication.  Which means they have not figured out how to stop the scarring that is occurring.  Which means she is still going downward and not stable yet.

Which sucks.

-Zoe's eyes are getting drier.  Zoe is followed for her dry eyes- she does not produce tears.  Dry eyes can lead to, well to put it bluntly blindness.  When the cornea is too dry it gets damaged and then stops working.  So keeping Zoe's eyes lubricated is important.  We give her eye drops four times a day including night time drops which are not drops at all but basically like vaseline which if you ever tried to get a little glob of vaseline in to a squirming child's eye you know it is not an easy task!  So what it means is a another minor eye surgery for Zoe.  No big deal.  We know there are much worse things that could happen.  But seriously, can the poor kid just catch a break?  One good thing is that we have a date for her G-tube surgery so they are going to try to coordinate this procedure with that one so it will be one less anaesthetic.

Some Days Do Have a Bit of Light Peaking Through All Those Clouds

Every night Ailsa asks us, "What is your favourite thing from today?"  Tonight I said to her, "I loved seeing how amazing my girls are.  You (Ailsa) did amazing getting your blood test.  You are such a good girl and I am so proud of you.  And watching Zoe dance in her upsee was pretty awesome."  We got Zoe's upsee (a walking device that is awesome! see website for more info: ) last week in the mail and have used it a few times.  Zoe is loving it so far.  Today I could not figure out what she was trying to do until she signed, "Ailsa."  Ailsa was randomly dancing in the hall of the hospital (because that is what one does when one is three years old).  I realised Zoe was trying to dance too.  So we stood there stomping our feet and giggling.

That did not suck.

That was awesome.

Sunday, July 6, 2014

Fun Month So Far

Zoe and Ailsa napping in the tent while camping Canada Day weekend. 

 Zoe loves the spinning strawberries at the local parking lot fun fair.

 Ailsa holds on to our gigantic cotton candy stick.  Zoe remembered cotton candy from previous experiences and refused to open her mouth (she does not like anything too sweet).  Ailsa was very excited to try cotton candy for the first time.  Alison (in the picture) came along to give us an extra set of hands...I think she just wanted to play too :)

 Ailsa, Zoe and Gavin sitting on a boat at the Easter Seals Regatta.  This is one of Easter Seals biggest fund raisers- people who want to enter their boat have to raise money.  They ask cute Easter Seals kids (like Zoe) to show up and ride around on rich people's boats and then go to a BBQ.  It was a fun day and as you can see- Zoe loves being on the boat.

 This picture cracks me up because it is so similar to a picture we took two years ago of Ailsa at the Regatta.  She looks totally comfortable and at home on the water.

 This was Zoe's expression the entire trip.  Watching Zoe is very rewarding for donors because they get to see what a great time she is having.

This little girl with Ailsa is a sibling of a child with special needs who rides at Hippotherapy right before Zoe.  They hit it off and had a great time playing together all day.  We hope to get together soon for a play date.  The child with special needs is very similar to Zoe and they enjoy seeing each other too.  We hope this is a relationship we can build for Ailsa- having a friend who also has a sibling with special needs would be great for her.  Gavin and I also seem to have some things in common with the parents.