Silly brain

I’ve had a very eventful time lately.  The mom’s asked me not to talk about it until now because we didn’t really know for sure what was going on, but now that we have a better idea I can tell you all about it.

A few weeks ago, the mom’s started noticing that I was having these little muscle spasms.  It would mostly happen just after I had woken up and was just playing on my mat.  They were always very quick (only about a second or two) and it seemed to happen when I was grabbing my feet, so at first the mom’s thought it was just me losing balance a little bit.  But over time (and especially when my sleeping got all messed up over the Christmas break) it started happening a little more often.  Sometimes it would just be one or two spasms, but other times it would be 7 or 8 in a row and they would get a little bigger.  The mom’s made a big effort to get my sleeping routine back in order and the spasms seemed to go away a little bit but they were definitely still happening.

Finally, last week my lovely pediatrician was able to get us in for a visit to Sick Kids for an EEG.  It was on Thursday morning and I had to wake up at 5am and then stay awake until the test at 8:30am because I had to be tired.   An EEG is a test where a nice technician measured my head, drew all over it with crayons and then put all these little stickers on my scalp that were attached to pretty coloured wires.  The wires were able to send pictures of my brain activity to the technicians computer.  The test lasted about 1 hour and I had to be sleeping, and then slightly awake, then awake enough to look at flashing lights and then asleep again.  Luckily Mama C was holding me the entire time so I was pretty comfortable and only cried at the end when she and the technician were pulling all of the stickers out of my hair.  After that we waited around until we finally got to see the neurologist who was able to explain to the mom’s what’s been going on.

It turns out that I’m having something called Infantile Spasms (or West syndrome), which are a type of epilepsy/seizure disorder.  Kids with Down Syndrome are more likely to have these issues then typical kids, but also kids who have had an Hypoxic-Ischemic brain injury are also more likely to have these as well, so it shouldn’t really be a huge surprise that I’m having issues with them, but it was.  The difference between Infantile Spasms and other seizures though is that my brain activity between the physical seizures is all still all wonky (as opposed to only being wonky when I’m actual having the spasms), which means that it can cause problems with my development. (The mom’s found a really good article to help explain it to them, so if you want to understand it better you can read it too:

All of this means that the doctors have to treat it very quickly and very aggresively so that we can stop the spasms and the wonky brain activity before it causes too much damage.  Luckily I have Down Syndrome though, and even though it’s more likely that we will get West syndrome, it’s all less likely that it will affect us as badly as typical kids so it’s actually really good that I have this extra chromosome (now it’s not just my cute chromosome but it’s my protective one too).   They’ve started by putting me on a new drug called Vigabatrin and they’ll check in two weeks to see if it’s working.  If it’s not then I’ll have to start a different drug that’s given to me everyday with a needle, so I’m really hoping the Vigabatrin works.  It comes with a lot of not so nice side effects though, so until my body gets used to it, I may be having a couple of not so great weeks.  It’s supposed to make me very drowsy and tired, but will also keep me awake at night.  It may cause me to gain weight (which actually made the mom’s happy) but may also make it harder for me to poop.  The big thing that made the mom’s unhappy was that it will probably cause me to loose the muscle tone that I’ve worked so hard to build up.  So, things that I’ve been working so hard on, rolling over, sitting up may get a lot harder in the next little while.  It also means that I’ll have to just be g-tube fed for a while too because I’m going to lose the muscle tone that helps me suck and I’ll also be very drowsy, so it would be dangerous for me to try and eat because I’m so good at aspirating when I’m not at my best.

So, it was a big week and we don’t really know what it means for the future.  I’ll have to be on the medicine (whichever ones works) for at least 7 – 8 months and hopefully by that time I will have grown out of these seizures.  But the doctor’s did say that it’s probably pretty likely that I’ll have a different kind later on.  So, like my veins and my sight, we’ll just add this to the list of things that I’ll just have to figure out as we go along.

Goof Ball Mama

I know that some of you may be really shocked by what I’m about to tell you but I’ve thought long and hard about it and I think you deserve to know. Sometimes Mama C can be a total goof ball.

I’ve known it since the first time we met. Sometimes she makes up silly songs and when we read stories she does all of these silly voices. She makes funny faces and sometimes talks to me like Im as old as she and Mommy (like really old). But last night took the cake. Last night she made me hang out in a laundry basket!20120124-232800.jpg

You see, my new cousin Baby O, is going to be here really soon (but not until February 8th, right Auntie CC?). And Mama C is getting all excited to take pictures of my Thor and his new little brother. So, somewhere in this excitement she decided to practice with me (I don’t blame her for that, I’m a really great model). So before I really understand what’s going on she’s putting a pillow and my creamsicle blanket into my laundry hamper and then she just out me in there too…like I’m dirty laundry


It really wasn’t so bad (not that I’ll ever tell her that). I got to sit up nicely and watch the cat and play with my feet. Even my dog Ellie came over to see what I was doing. Mama C kept trying to get my dog Ellie and I in the same picture but we are very tricky and we move too fast. That made her mad because apparently there is nothing cuter than babies and dogs but obviously she doesn’t know that rule doesn’t apply if the baby is in laundry basket that used to hold dirty socks. Like I said, goof ball.


Quick Catch Up

After I’ve been sick, the mom’s get really happier when I start to feel better.  Not just because I’m feeling better and they don’t like to see me sick and hurting, but mostly because I jump from zero to 60 in a matter of hours.  I go from being clingy and cranky to kicking my feet, rocking all around and smiling from ear to ear before they even know what’s going on.

I had been feeling really sick over the Christmas break.  I had a cold that just didn’t want to go away.  I was coughing and stuffy and feverish and I just didn’t want to be put down at all.  It didn’t matter who was holding me (which was kind of nice for the mom’s because at least they could pass me off when they had to do things), but I was only happy when I was snuggled into someone’s chest.  The mom’s were sick too and we just kept making each other miserable, especially at nights when we were staying at Grandpa’s – we were all sharing one bedroom and so when the mom’s would cough, I would wake up and cry and then I would only sleep if they were holding me, so then they ended up staying up all night with me, which made it harder for them to get better.  It was a very bad cycle.  But then we finally got home and after another couple days of good rest (and just in time for Mama C to go back to work), I started to feel better all around.

It wasn’t really so bad, except for the night that we finally got to have our Christmas dinner with Gramma and Pa, and Auntie CC, Uncle Rico, Thor and my almost-here cousin.  I was miserable that night, even though I got some very cool presents, including the biggest Slinky I have ever seen!!  While I couldn’t really appreciate it that night, now I love it so so much!

Beyond actually being sick, I’m doing really well.  I really think that my vision is getting better in leaps and bounds.  Lately I’ve been looking up more and making a lot more eye contact.  I love rolling over and seeing the mom’s in the morning and smiling when I see their faces.  Sometimes I still need to be encouraged to look up and see what’s happening around me, but we can definitely see an improvement and so we’re all pretty happy!  I didn’t gain a lot of weight between December and January, so we need to work a little bit harder on making me grow faster, but hopefully before we know it, I’ll be breaking 20 pounds.  As long as I get there before my soon-to-be-here cousin, then I’ll be happy with how I’m doing.