Sunday, September 28, 2008

Mustang Joey

Joey has a new walker, the old one we called "The Green Monster" was just too heavy and cumbersome, it was too hard for him to actually move it. So now we have the Pony, which I prefer to call the Mustang, it's just so much more macho (you'll see the little picture of the horse on the bottom of the frame).

He's just starting to get used to it, and can't really figure it out yet so he basically just stands there, which is okay for now until he gets the concept. Weight-bearing on his legs is really important right now. I know he'll get it eventually...I remember when we first put him in his Jolly Jumper he'd just hang there, it was so sad! But once he figured out he could get his legs to move him around he was a wild man, so much so that we eventually had to take it away because his crazy jumping just wasn't safe anymore.

So here are some pictures and a short video clip of Joey and his Mustang, with a special guest star appearance of Vita Marie, our much loved therapy cat (she's not really a therapy cat, it just seems like she is) who loves Joey to bits.

- P, J & J

Saturday, September 27, 2008

Vintage Joey

I've been feeling a bit nostalgic about Joey's infancy lately, I really miss having a baby! Some people aren't really "infant people", they prefer the toddler stage, but I have to say that I really enjoyed Joey as a baby, I always wanted to just freeze time and keep him that little forever. So to satify my yearning to go backwards, I thought I'd post a few pictures of my sweet baby Joey:

His first picture after being born.

Teeny tiny in his cradle

Still able to fit in my lap

I have a thing for baby feet :)

- P, J & J

Tuesday, September 23, 2008

The Zoo

Sunday Grandmere and I took Joey to the zoo. Despite my favourtie animals (the meerkats) being "off display" ( my Mom thinks they're busy with their Telus commercial appearances) we had a good time. For the first time Joey actually became whiney when he was's probably happened before but it's always hard to tell with him, this time we're positive it was because he was hungry! Definitely a good sign. His eating is on another upward swing, and we're thrilled.
Not many pictures to share, by the time I thought about whipping out the camera Joey was ready for a nap and not his usual smiley self.

Sleepy Boy

Hugs from Grandmere (even sleepier)

Yes, they really got this close to us when we were sitting in the grass. No zoom used here! Joey wasn't a fan.

So it's back to work for me today, and Joey's first whole day with Grandmere!
- P, J & J

Friday, September 19, 2008

Lovely Sudbury

We had a wonderful, if not whirlwind, trip to Sudbury yesterday. My dear husband drove the entire 3 hours there (stopping when necessary and without complaint for both his baby boy and for his pregnant sister!) and again on the way home. We had lunch with Zia Ev at her house, a visit with Zia Ange at her new retirement hme and then dinner with the whole clan. Have you ever visited an Italian aunt around lunchtime??? Let's just say it included ravioli with meat sauce, meatballs, salad, bread and a touch or red wine ;)

Despite a small bought with car sickness on the way home (poor Joey, and poor Zia Jodi who got to sit beside him!) a great time was had by all. Of course, we have new pictures:
This is of Nonno Joe (Jason's Dad, Joey's namesake) given to us by Zia Ange, keeper of all family history.

Joey with Zias

L-R: Zia Ev, Zia Jodi, Zia Ange

Dinner was at a pub, so we thought it only right to take a picture of Joey's very first time in a bar! (note both the proud Daddy and Joey's adorable new moccasins, picked up at the French River Trading Post on the drive up)

This picture turned out terribly, but it's the only one we have of the group at dinner.

So today we're off to visit Nonno Joe and Nanny Sue, a quick trip to Ikea and then to the airport to pick up Grandmere!

And just a quick "hello" to Gramma and Papa Roy, who I know are enjoying their vacation but are also missing Joey like crazy! Gramma never really mentally vacations from Joey, I know she is probably reading this even though she should be relaxing in the Okanagen Valley :)

- P, J & J

Wednesday, September 10, 2008

Bayley Results

The results from Joey's Bayley Assessment are in, and here they are:

Scale Age Equivalency

Cognitive 6 months

Receptive Communication 10 months

Expressive Communication 6 months

Fine Motor 4 - 10 months

Gross Motor 8 months

So no major surprises here. The range for his fine motor is pretty puzzling. I would actually say he is much closer to 4 months than 10 months, I'm not really sure what he does in a fine motor capacity that would be considered equivalent to a 10 month old.

Given that the only therapy that he receives that has been consistant is physical therapy I'm not shocked that his communication, cognitive and fine motor skills are so low.

I'm beginning to become very disillusioned by our "system" for children with disabilities in this province. In talking to other parents of disabled kids I realize this is just another milestone for us on our journey, it seems that everyone reaches this point at some time. To quote from a very inspirational video that was shared with me a few months back... "This system is so flawed by it's inflexibility to adapt to an individuals' needs". Joey could be the (extremely cute) poster child for the need for change in the services available to special needs children.

I worry about the waiting lists, the lack of service, the lack of funding, the lack of support. Joey isn't even 2.5 yet and already I'm frightened about how on earth he will adapt to school. The gap between Joey's abilities and the desired milestones for children his age is getting steadily larger...while he continues to make progress and never loses skills, which is all very positive, he is still so dependent on others in every way. I mean, if his "age equivalency" average of 7 months doubles over the next year and a half, I worry about how my 4 year old, functioning at a 14 month level, could be integrated into a junior kindergarten class. My understanding of the availability of services once kids start school is that they become LESS available, and that kids with disruptive behaviour issues receive top priority. Will I actually reach a point where I'll HOPE that Joey develops behaviour issues just to receive the therapies he deserves? No parent should ever have to ask themselves that question.

On to the good news: We're on vacation this week, so Joey gets his Mommy and Daddy all to himself. It's been a busy week; OT, PT, first day of swimming lessons, pediatrician appointment, dietitian appointment. And that was all by Tuesday!

Joey weighed in yesterday at 21 lbs 15 oz, 90 cm tall. The pediatrician is still satisfied with his growth and doesn't feel a feeding tube is necessary yet. He is going to refer us to a developmental pediatrician (In Orillia, not at Sick Kids in Toronto, yay!) to evaluate him for a possible secondary diagnosis of Sensory Processing Disorder (SPD). I would be surprised if Joey WASN'T diagnosed with this...he has definite sensory issues...loud and unusual noises (especially indoors), tactile sensitivty with his hands and of course his unwillingness to put anything in or near his mouth except for fabric. I'm not sure how long we'll wait for this appointment but there's no rush.

The rest of the week is busy too...a trip to Sudbury to visit Jason's Zias and extended family tomorrow and Friday a trip to Ikea in Toronto, followed by dinner with Nonno and Nanny Sue, then off to the airport to pick up Grandmere! If the weather holds out we'll be going to the Toronto Zoo on Sunday or Monday. Lots of excitement :)

- P, J & J