what a week!

This week has been a bit hectic...

We had Blind Low Vision Therapy on Monday, which went really well and Caelan is still enjoying his bouncy horse thingy!

Tuesday we made the drive into CHEO for a Nephrology blood pressure check.  Caelan refused to cooperate.  Apparently having your blood pressure taken is extremely painful or insulting because Caelan goes nutso.  The nurses and I were singing and blowing bubbles, doing everything we could to try and distract him or make him happy enough to get a decent reading but despite all our efforts it never happened.  Very frustrating when you know this is something that really doesn't hurt at all!  The blood pressure reading they were able to get was so bad that the nurses didn't even document in his chart, knowing that it was ridiculous and innacurate.  We'll try again in January.

From there we walked over to the Eye Institute in the General Hospital to order Caelan's protective glasses. I don't know how we're going to convince him that these are a good thing to wear.  Even just trying them on for brief periods in the store he was whipping them off faster than you'd think possible!  Luckily, the ones that we've ordered have a band around the back to try and keep them on, although it didn't slow him down much in the store!  They weren't supposed to be ready until next week but we got the call yesterday that they're ready to be picked up. 

Wednesday we were finally back at OCTC for occupational therapy.  It's been a month since we were there because of my cold and unfortunately while we were there it became very clear that Caelan is starting a cold.  He did pretty good but you could tell he wasn't feeling the best.  The coordinator for the preschool was in to do an assessment and will periodically pop in to his appointments between now and September when hopefully he'll be attending the preschool.    She was a great lady and I'm really happy we got to meet her.  We were given a tour of the preschool and explained how the program works.  Caelan would be attending about three days a week in a morning or afternoon program.  I'm still so disappointed that he's unable to attend in January. The spots are all full now :(

From there we rushed home for our ASL lesson.  It's a little scary because the curriculum that we follow has fifteen lessons or chapters in it and we're already on lesson thirteen.  How can that be?  Am I supposed to be fluent in just a few more lessons... because I'm so NOT!!  It's just practice, practice, practice.  We have to do a better job of integrating it into all our conversations not just when speaking directly to Caelan.  It's a lot to think about when your still learning.

Yesterday, we had a visit from our dietician.  It's been over three months since we last saw him and Caelan lost weight!!!!  Grrrr... so disappointing.  He was up in the 50% for his age, and he's dropped to the 25%.  It's weird though because he didn't really lose that much weight, only a few ounces so I don't really get it.   To look at him, he certainly doesn't look like he's fading away!   However, the dietician would like to increase Caelan's feed from 1000ml/day to 1250ml/day.  We're trying to figure out how to do this and will be playing a bit with his feeds over the next couple days.  Our first option is to run 750ml continuously overnight at a slower rate, and continue with his two regular feeds of 250ml during the day.  Should be interesting.  It's quite the increase and I'm not sure how well Caelan's tummy will tolerate it.  The dietician will be back next week to see how it's going.

In our spare time we've been trying to finish up Christmas shopping, cooking and baking in preparation for a crazy weekend ahead.  We're hosting a Bridal Shower and a Christmas Party, attending Ryland's Dance Recital and a Birthday Party!!! 

Tis' the Season!!