Busy Busy Busy

I’m very popular here at Sick Kids and it keeps me very busy.  Everyday someone called “transport” comes and wheels me away in my bed, with Mama C trailing after us, to take me to see a new part of the hospital.  Sometimes, they get confused and don’t realize that I’ve already been to Ultrasound or Xray, but it’s still nice to get out of my room, so I don’t complain too much.  Plus, usually while Mama C and I are waiting for Ultrasound or Xray, people like to stop and talk to me – mostly about my hair.  Some little kids like to look at me because I’m just a baby and then they ask questions about my Ng tube, but it’s fun to meet new people so I don’t mind at all.  Plus, I understand why they’re checking me out, I am pretty cute.











All of these tests are trying to figure out the different things about me that like to play tricks.  I’ve had some ECG’s to look at my heart and lungs, an ultrasound to look at what the doctors were afraid was a hernia (it’s not, just a weak muscle), they’ve checked my ears (I hear really well), and they’ve checked out my eyes.  This was where we thought we had come across a problem.  They checked my eyes pretty soon after I got moved out of PICU and the tests showed that I wasn’t seeing things anymore.  While there was nothing actually wrong with my eyes, part of my brain that got injured didn’t know how to interpret what my eyes were seeing, so my eyes wouldn’t focus on anything and I couldn’t track things that you moved in front of me.  The only thing I was doing was moving my eyes if I heard a sound but even then I wouldn’t always do that.  So, the doctors gave the mom’s that news and of course, they were pretty upset.  But then, something happened! It’s officially not true, because we haven’t seen any more eye doctors yet, but everyone (and my everyone I mean the mom’s and my OT Lisa) think that I might be seeing more than the tests were showing.   I try really hard to look people in the eye when they’re talking to me and I’ve started moving my head to look at my butterfly mobile again.  Then, best of all, when I was in a dark room yesterday, Lisa put some moving pictures on the wall of bright coloured birds and as soon as she turned them on, my eyes got really big and I stopped crying.  Lisa’s pretty sure that even if the tests are saying one thing, I’m actually tricking the tests! The mom’s will never know for sure though because I don’t speak english yet.  They say that the person who figures out how to translate “baby” will make more money than anyone else in the whole wide world.

I’m still having a little trouble eating with my Ng tube, but it looks like that will be a good thing.  The mom’s talked to the G-tube nurse and then went to a class to teach them all about G-tubes and how to take care of mine when I get it.  Then, when we saw my doctors during rounds today, they said that I will probably get mine put in next week! The mom’s are really really happy about that because it means that they don’t have to be so worried about me aspirating food from my Ng tube anymore. It means that I won’t get to go home for at least another 2 weeks, but everyone thinks it’s for the best.   The G-tube is especially good because I decided to throw the mom’s one more bone and I am starting to remember how to suck a bottle again!  Lisa has been working with me a lot to help and I started doing so well that she was able to do a feeding study on me.  This is when they take a big machine and watch where my food goes when I swallow it.  It was really cool.  It showed Lisa that if I drink thin liquid (like regular formula or water), it goes down the wrong hole right away, so that’s not safe for me.  I also can’t have thin puree but I can have a medium puree (it’s my formula mixed with a lot of rice cereal) and I swallow it really safely and I don’t aspirate on it at all, even if i take too much.  So today, after all of my hard work, Mama C was able to feed me 50ml with a bottle!! We’re only going to try it once or twice a day for now, because it’s hard work, and it’s not like feeding a little baby because I have to be sitting in a special chair for now until I really get the hang of it, but everyone is really proud of me.  It’s not enough to make me grow, but it’s enough that I can keep working on it and try some other things too.  Hopefully by December I’ll be doing well enough that I can even eat some birthday cake!











AND – I told you I’ve been busy – I’m now allowed to go for walks with the mom’s in my stroller around the hospital.  I have to still wear my oxygen monitor, because sometimes my oxygen levels drop pretty quickly, but it’s still nice to be able to go and sit with the mom’s while they get lunch.  They even let me go to the toy store!! This means that maybe the next time my Thor comes to visit me, I can meet him downstairs and we can throw coins in the fountain together!

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