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.
-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:
http://www.fireflyfriends.com/upsee ) 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.
5 weeks ago