New Videos!

Lots of new stuff! This first video is pretty darn cute, I especially love how the cats are keeping a watchful eye on what he is doing:

Those food and water dishes for Kaiser and Vita have been there since we moved into this house a year and a half ago. Joey has never paid any attention to it, but recently he's become a LOT more curious about everything, and a little more bold. He moves large items around ( like his high chair!!!) by pulling and dragging them around the room. The first time we caught Joey doing this in the cat dishes I was bit disgusted; I mean, he sticks his hands in the water, then into the cat food, and then into his mouth! But given that he doesn't usually bring anything that resembles food to his mouth I guess this is a huge step, and little processed fish meal never hurt anyone, right? I suppose we should tell him "no" when he does things like this, but given his limited understanding of the word (and the fact that he thinks it hilarious whenever we say the word in a stern voice) it's best just to redirect him and/or move the object in question. Traditional discipline for 2-year-olds just don't work with Joey, as he really is never "bad" and I don't think anyone can misbehave if they don't understand they're doing so. But you'll notice he looks back at me many times, it could be just that he's proud of himself and wants to make sure I'm paying attention, or maybe he is starting to understand that there are some things he shouldn't be doing!In this case, shortly after this video was taken, we moved the dishes and now the feline members of our family dine in the laundry room :)

This next video is of Joey's latest physiotherapy session last Friday. We love our therapy assistant, Patricia, and Joey loves her even more. You'll also notice Gramma Phyllis keeping a watchful eye over her boy in the background! Our goal right now is to get him standing for as long as possible to build up the muscle tone in his legs. He doesn't yet have the balance, strength or coordination to stand without help. We love this little rack they have, Jason is hoping to build something like it for Joey for Christmas. The little bells are stitched onto multi-coloured wide elastic and secured like a bracelt with velcro, if anyone knows where I can find the elastic please let me know, he loves them and I'd love to make him some.

- P, J & J

How to Ask for what You Want...And Get it!

Another challenge faced, and overcome!

To Whom it May Concern,

My name is Pamela L. I have a son, Joseph, who is 2 years old and has cerebral palsy. For the past year we have been receiving Nutrisure pudding through our provincial drug program, the Ontario Drug Benefit card. Each month we would receive 16 4-packs of pudding. Our son is on a diet of strictly Pediasure Plus and Nutrisure pudding, the pudding is the only solid he will tolerate. To date we have been successful at avoiding the insertion of a g-tube as he will take the Pediasure by bottle and pudding (chocolate only!) by spoon.

Last month I called our regular pharmacy to refill our prescription for the Nutrisure. When I picked it up I was given only 3 4-packs and told that the product has now been discontinued, and that Ensure pudding would take it's place. When the pharmacy attempted to order chocolate Ensure pudding through their wholesaler, McKesson, they were told that they can only get the butterscotch flavour and they weren't sure if or when they could get chocolate. In addition, it did not appear that ODB would be covering the Ensure pudding.

I have called your office in Montréal many times over the past 2 weeks and spoken to several very nice customer service representatives, but unfortunately they have not been able to help me. One person did offer to send me some $5 coupons, however I am not able to find chocolate Ensure pudding at any of our major pharmacies, including Shopper's Drug Mart, Zellers, Costco, Walmart and several grocery store chains. They all use the same wholesaler, and therefore cannot order the pudding as they are being told it is not available at this time.

I have a 2 year old disabled child who relies on this pudding. I find it irresponsible for your company to suddenly discontinue the Nutrisure pudding without sufficient notice to customers, and not having an alternative available. Furthermore, I have contacted the Ontario Ministry of Health today and they have informed me that your company has not even applied to have Ensure pudding covered! Should this not have been done prior to discontinuing the Nutrisure?

The situation for us has now become critical. We hd a bit of a reserve of the pudding built up but it is now gone. I encourage you to act responsibly and please send me some chocolate Nutrisure or Ensure pudding as soon as possible, work with your distributors to get the supply flowing and complete the necessary paperwork to have the new Ensure pudding covered under ODB. I am sure my son is not the only child who relies on this product.

I anxiously await your prompt response.

Pamela L.

And late yesterday I received a voicemail message from someone at the head office, saying they would like my address because they will be sending me some chocolate Ensure pudding, free of charge :) Thank goodness for that...Joey gets 8 cases of Pediasure Plus a month (which would cost $40 each) and 16 packages of pudding a month (at $8/package). At $438/month this kid would eat us out of house and home! We're not eligible for much in regards to provincial support, because it is all income-based, so this help has really been crucial for us. When you decide to have a child you're usually prepared for the cost of a crib, stroller, clothing and all the other accessories, but I don't think anyone banks on almost $450 per month in food at the age of 2!

In other news, yesterday Joey and I met with his physiotherapist and orthotist, to examine how he's doing with his SMOs (the little inserts in his shoes we have made last February). The darn kid keeps growing! He's completely outgrown his orthotics and the shoes, so we had new casts made right away and should have new SMOs next week.

Also, Joey's physio has been really torn about whether he needs SMOs (the small inserts he has now) or AFOs (ankle/foot orthotics, the bigger inserts that come up to the knee). In an ideal world she would like him to have both, for different purposes, but given that SMOs cost about $500/pair, and AFOs about $2000, and the provincial government would definitely not pay for both, it was a tough decision. However, luckily Jason and I both have decent benefit plans through our employers, and have enough coverage to pay for the SMOs. So we're going to get those now, and in February we'll get the AFOs which the government will pay 75% of, and our benefits will pay the balance.

And on another positive note, Joey is doing extremely well at nursery school, with the fantastic support of Gramma Phyllis! What a difference less than 2 months has made...Joey's reaction to other children is COMPLETELY different, he doesn't mind the noises anymore, which makes life a whole lot easier for everyone, and more enjoyable for Joey I'm sure. Yesterday I received a copy of Joey's class picture that was taken last month. As soon as I looked at it I of course zereod in on Joey right away. You've all seen lots of pictures of him, and he is pretty photogenic if I do say so myself, but in this particular picture his mouth is hanging wide open and my immediate thought was "Oh my, he really sticks out as the 'special needs' kid". But then I looked at the other children in the picture....it looks like a class full of special needs kids!!! What a laugh it gave us! I guess when you try and take a picture of a group of 2.5-5 year-olds it doesn't tend to turn out well. Almost all of the kids had their mouths gaping open, or their eyes rolled up looking at the sky. That made us feel a lot better! I wish I could post the picture here but since this is a public blog I'm not really comfortable posting pictures of other peoples' kids without their permission, so you'll just have to trust me on this ;)

- P, J & J

The Quest for the Right Clothing

Buying clothes for your child should be fun and easy, right? Well, if that child is Joey it's more challenging, though still fun.

Because Joey doesn't walk, and is extremely skinny around the waist, finding clothes that fit him properly and actually stay on while he scoots around on his bottom is no easy task. He has the waist of a 6-12 month old, but the height of a 3 year old! Try finding pants that meet those requirements!

After much searching we found the perfect pyjamas. They're from the Gap, fit very slim, are one peice and have no feet. No feet is key...when Joey scoots around in footed pyjamas his legs end up inside the body of the jammies, causing face-plants, causing rug burn...you get where I'm going with this. So these special Gap jammies are only sold in the US, but I've managed to do my bit for the environment by buying them second-hand on Ebay. One probem solved.

My newest challenge? Overalls. Joey has outgrown all of his size 2T overalls and it's time to move on to 3T. Overalls are great for him, since they're adjustable and don't come off. Unfortunately, brand-new plain denim overalls can run about $40, which I think is a bit crazy for kids clothes, so I've started looking for second-hand overalls. They are nowhere to be found!!! I've checked all three consignment shops in our city, nada. With the unfortunate downward turn in the value of the Canadian dollar Ebay is no longer the cost-saving heaven that it used to be. $10 USD to ship one paid of overalls from the US to Canada?! I don't think so! So I've posted some "wanted" ads on Craigslist and Kijiji, hoping for some hits, and I've posted on the parenting websites I frequent, hoping someone might want to make some extra cash and sell me their kids' overalls. So far I've gotten some offers of Sesame Street and Blues Clues overalls, but if you know me you'll understand that I'm a bit of a snob when it comes to how Joey is dressed...no character clothing for my kid!

So my "hit" counter tells me that this blog is read thousands of times (which freaks me out just a little bit...who are all of you people reading my blog?!) so if you or anyone you know has some gently used size 3T denim overalls that you would like to sell, please let me know!

- P, J & J

Inspiration

As we sit and patiently await the results of our latest test, I found myself needing some inspiration. I've inserted a link to a video about a little girl in Toronto named Teya. This video was first brough to my attention about a year ago, and I had the amazing opportunity to talk to Teya's mom, Jeanette. Both Jeanette and Teya are such huge inspirations to me. Teya for proving everyone wrong, and Jeanette for perservering, thinking outside of the limitations of our network of children's therapy services and believing in her daughter. Jeanette told me that after little progress with traditional therapies she basically "fired" everyone, and started over with this new type of therapy. She actually flew to Chile in order for Teya to receive therapy from the person who created it.


http://www.cuevasmedek.com/teya_mov.html



We're pretty lucky so far...no one has said to us that Joey will never walk. In fact, everyone seems pretty positive that we will, it'll just be in his own time. Despite his delays Joey has definitely developed quite a personality, and perhaps inherited a bit of his mother's stubborness! This poses challenges when it comes to therapy, but we are still confident that he will walk.

Today I finally broke through one of my own mental blocks and swallowed a bit of pride and got an application for an accessible parking permit for Joey. I had never really considered it before, but now that he is able to sit in shopping carts or in a chair by himself I find myself carrying him from the car to whatever building we're going to, instead of using a stroller. That was fine in the summer, but with the snow and ice upon us it's becoming increasingly dangerous for me to walk across a skating rink-like parking lot with a squirmy 2.5-year-old in my arms! Last week when we went to his physio appointment I carried him in, extremely nervous about slipping and falling because the lot was covered in a thick layer of ice. On our way into the building I passed the empty accessible parking spot, which was cleared of ice, well salted and there was a salted pathway to the door. So we're applying for a temporary permit, since we never know if/when Joey will be at least be able to stand on his own.

I hope you found the video as moving as I did. I'm glad I came across it again.

- P, J & J

Myotonic Dystrophy Test - Take Two

So the lab eventually called me back and took full responsibility for this mix-up...CHEO in fact did not actually receive the blood sample until October 15, 6 full days after it was drawn. They offered to do a home visit to draw the blood this time, but luckily I heard back from our geneticist and decided not to risk it again with the local lab and this morning we headed to North York General and gave another sample. The poor baby didn't enjoy it much, but they were good and quick, and soon enough we were back in the genetics department watching the huge 100 gallon aquarium and it was all smiles.

Dr. V says she has gotten results from this test as quickly as 4 weeks, but it has also taken as long as 12 weeks. I noticed on the lab requisition that there were some circumstances that this test could be a rush job, but only if I was currently pregnant or Joey was less than 3 months old, so we get absolutely no priority at all in this case. Had I not been so mentally and physically drained I might have gotten pushy and asked that she request this one be rushed under special circumstances (maybe that Mommy is going to lose her mind?!) but I decided against it.

So it may not be until January that we get the results, but the good news is that Dr. V tells me that this is a definitive test, no room for misinterpretations like with the Angelman test fiasco back in February. I suppose I'll just focus on that positive for now!

- P, J & J

I am being tested...

No, not my blood, but my patience.

I just received a message from Sick Kids Hospital to let me know that Joey's test for Myotonic Dystophy was NOT done, because Ottawa Children's Hospital (CHEO) did not receive Joey's blood sample until SIX DAYS after it was drawn, and they need a fresh sample to do the test.

So that would mean they received it October 15 or 16, knew they couldn't do the test and I am just being notified now. And here I was thinking that we'd be getting results any day now, but instead I'm spending the balance of my day calling around to the lab, Sick Kids and CHEO trying to find out where this mistake happened. I need to know so that we can figure out if we're just going to have to drive to downtown Toronto to get the blood drawn this time or if it wasn't the lab's fault maybe we can try again here. As I type this I am into my second half-hour on hold with the lab, and the longer they leave me hanging on the phone the more angry I am getting.

I am devastated. As I explained to the Sick Kids nurse (in between sobs) in the message I just left her, I am 33 years old and would like to have another child, but we need these results back before we can decide on that. I think about this test daily, wondering if Joey has MD, which would mean I have it too, and are we going to have another baby or am I going to be scheduling a tubal ligation because there's too big of a risk to have another child? I feel sick to my stomach knowing we have to start all over again.

- P, J & J