Sunday, May 4, 2008

More Florida, some Sick Kids and a New Car!

Well, we made it back from Florida and jumped right back into the craziness that is our life. Joey felt well enough by the Thursday of our trip for us to make it to the Tampa Aquarium, which we all really loved. It reaffirmed our belief that Joey loves water, fish and all things related. Here are a few more pictures...we did a fake photo shoot on the beach the evening before Joey left, I just couldn't bear the thought that Joey hadn't spent any time there so we took him out in his jammies just to shoot some photos!

Joey left on the Friday with Grandma and Papa, so Jason and I had a whole 30 hours to ourselves before we had to head back on Saturday. We actually managed to put on our bathing suits for the first time and make use of the pool which was heavenly. On the way home I started feeling ill but hoped it was just the nasty airplane air making me congested, but by Sunday morning it was clear that it was my turn to be sick. Joey and I are both fine now and it's truly a miracle that both Papa Roy and Jason managed to avoid getting sick. Unfortunately for Joey, his illness caused a setback with his eating, we're back to PediaSure out of bottles and mostly chocolate pudding and strawberry yogurt as snacks. This usually happens after he gets sick, so we're hopeful that in time he'll get back to eating as well as he was before our trip.

Last Tuesday we had a fun-filled day of tests at Sick Kids in Toronto. We had been dreading this for months. In the morning Joey had to be sedated for an Evoked Potentials test, which took over an hour. Basically they are testing the sensory nerve pathways from the brain to the muscles to make sure the signals are travelling as they should. So once he was asleep it was a bit like an EEG....little electrodes placed all over his body and then little electrical currents were transmitted to different spots. We don't know the results yet as the test was conducted by a technician, not a doctor. And of course I have a picture and video, because I'm weird like that!

In the video you can see the tests they did on his arms and hands. The electrical current is being sent by the little bar attached to his wrist, which makes his fingers move like that. Looks like everything works okay! And if you turn your volume up you can hear Joey snoring through the last little bit of his cold :)

The second test in the afternoon, the EMG, had us worried. We were originally told it would be rather invasive, little needles into his muscles while awake. We were pleased to find out that they were doing it differently and it didn't involve needles. It looked similar to the test in the morning in that they were transmitting electric pulses to the muscles, and it was completely painless. It took all of 5 minutes and Joey actually found it funny. What a relief! This test was performed by a doctor, who told us right then that the test results were normal and his muscle bulk, although a little low, was perfectly normal give how skinny he is.

We're meeting with a new Neurologist, Dr. Minassian, at Sick Kids on May 14th, and we should get the results from the Evoked Potentials test then. Our previous neuro referred us to this neuro when the first genetic test came back showing Joey had Angelman, as he is a specialist in this syndrome. Apparently he is a neurologist and a scientist in the field of genetics, so he should be a great resource.

Aside from all of this, Joey is doing extremely well. He has just started to pull himself up to kneel for short periods of time, which is thrilling. His communication, although he's not using words, is improving slowly as well. He has become a bit more whiney lately, and we think he's doing that to tell us something, but as of yet we haven't done very well at interpreting. His name finally came up on the waiting list for speech therapy through the hospital, so we're going for an intake next week. We've had a private speech-language pathologist for several months now that we've been paying for, but I don't think we'll stop seeing her since she's been really great.

As for the genetic tests, now word yet. The waiting is making me crazy! Both of my parents have now provided blood samples which have been sent to the US, but I haven't heard anything. I'm going to give it another week or two before I start my usual routine of weekly calls/emails asking for someone to look into it. It was only supposed to take a week or two once both samples were in hand.

And finally, our little bit of excitement is that we just got a new car yesterday! Both of our cars are 11 years old, and with all of Jason's commuting we knew this day would come. His car has finally reached the breaking has an electrical problem and in order to start it I have to "bump" it with my own car on the street so he can get moving and jump start it. Very classy, I must say, I'm sure the neighbours enjoy watching our two clunkers pushing each other down the road every morning. So yesterday we got ourselves a 2009 Pontiac Vibe, my very first new car! We pick it up on Thursday and we're very excited.

So that's it for now! Hopefully I'll have time to update more regularly so my posts don't turn into novels :)

P, J & J

1 comment:

Anonymous said...

Yeah--everything sounds like it's going SO great. And those pictures of him on the beach are adorable. Love his little hat! And I am SO glad the tests weren't horrible. What a relief for you guys. I'm going to email you now about the sandals/AFOs!