Wednesday, December 31, 2008

Cheers to 2009!

Well, my one Chirstmas wish came true today...I received a call from our geneticist with Joey's results for the Congenital Myotonic Dystrophy test....NEGATIVE!!!!! Phewf, I feel like a giant elephant is no longer sitting on my chest!

This puts us right back to where we were before, with no answers, but there is one difference....our quest to "label" Joey definitively is going to be taking a major back seat at this time. We certainly can't rule out future tests, but at this time we are no longer actively seeking a diagnosis.

It is entirely possible that there is an as-yet unnamed, undiscovered genetic condition that Joey has. It could be discovered 10 years from now, we don't know. But for now we will carry on treating Joey symptomatically and developmentally, and hopefully one day we can give him a sibling. At least the option is no longer off the table :)

We wish you a happy and healthy New Year, I know we are very much looking forward to ripping 2008 off our calendars and starting fresh in 2009!

- P, J & J

Tuesday, December 30, 2008

Caught on Tape!

Well, Joey stood twice for us yesterday at home, and I thought it would be a while before I could catch it on tape. Today Joey went to Gramma and Papa's house, and I got an email around lunchtime telling me that he stood up EIGHT times! So of course when I went to pick him up I brought the camera and thought I'd try to get a video, and our boy never disappoints. Here it's not mechanically "pretty" but it's a start!

And another quick video to illustrate why it is so difficult to catch him doing anything on tape, as soon as he knows the camera is on him,'ll see:

So I guess Joey just couldn't let 2008 pass into 2009 without giving us something big to celebrate. What absolute joy this child brings to our lives :)

- P, J & J

Monday, December 29, 2008

A Lovely Day for a Walk

The weather here is perfect for a winter walk...sidewalks are clear, blue skies, no wind and temperature hovering around freezing. Joey and I have been sick off and on but are both finally better today, so I thought the fresh air would do us some good. I hauled out the heavy-duty snowsuit I snagged on Ebay last year, it was about $139 brand new in the stores, I got it for $35 and it was in brand new condition, score! Last year it was pretty big on Joey, but still functional, but this year it fits perfectly. So I used the "2 years out of a $139 snowsuit that I paid $35 for" argument to justify my Ebay addiction to Jason :)

So here are some pictures from our walk today:

Not too impressed at the beginning...

But by the end it was all smiles :)

Here are a couple of pictures of downtown Barrie, taken from the edge of the hill we live on. The rain did a number on the snow, there's almost none left!

It's so much prettier in the summer, but it's neat to take a picture like this in late December and see the bay all blue, instead of frozen over and with ice fishing huts everywhere. Ah, global warming...
- P, J & J

Sunday, December 28, 2008

Another Down, then a Big Up! (quite literally)

Well, the holidays have come and gone, and they definitely felt quite a bit different this year. Frankly I'm relieved they're over...not that they were miserable by any means, just a bit tough.

I thought by this, Joey's third Christmas, he would maybe start to "get it" in regards to the whole concept, and maybe even open up a gift or two unassisted. Not this year, but I still say "not yet" over "it will never happen". Maybe that makes me a bit optimistic, but that's a label I'm okay with since it's not one I'm very familiar with and it seems like a nice one to enjoy.

It's hard getting excited about a holiday when, prior to having a child, one of the great things to look forward to was seeing the holidays through the eyes of a kid, which would definitely bring new meaning to Christmas. December 25th was just another day to Joey, perhaps a bit confusing with all the tearing of paper, empty boxes to explore, a giant tree in the living room and lots of people around eating lots of food. So now we have to adjust our expectations and see the holidays in a completely different way. We'll get used to it, I'm sure of that, but this first one after the realization that we won't have "typical" Christmases in the future was just a bit rough.

Now, on to our incredible "up"... The three of us were in the basement, watching a show called "Till Debt do us Part" (great show, by the way) and they mentioned the divorce statistic being 50%. That then led Jason and I to discuss how it is so much higher for parents of special needs children (75% to 85%, although some research disputes this claim), and how unfortunate it would be if that were to ever happen to us, since there is no other person on the planet besides the two of us that TRULY understand what raising Joey is all about. We feel pretty lucky that in our case I think Joey has made us stronger as a couple, and we make a pretty good team.

Anyway, as we're having this discussion about the stresses of having a child who is delayed and how it had been a while since we had seen any major progress towards a new milestone I was holding the TV remote, and Joey was playing on the floor. Joey LOVES the TV remote, saw it waving around in my hand I suppose, scooted over on the floor and kneeled up to try and get it out of my hand. This is nothing new, he does it all the time. The part that had us both in tears of joy was when he then brought one leg up underneath himself, then the other, and then he was STANDING at the couch, completely on his own! I did not help him in any way, it was totally spontaneous and independent, almost like he heard our conversation and decided to show us yet again at the perfect moment that he is always working hard to do new things. My stomach flip flopped all over the place, we were astonished and silent, not knowing what to say or do. After about 10 seconds he leaned back and fell on his bum back on the floor, and then proceeded to scoot away and play with another toy, as though nothing unusual had happened. I burst into tears, and Jason was laughing hysterically and kept saying "good boy! GOOD BOY!".

This is how it all starts with Joey. We can go to all the PT sessions in the world, and encourage him to practice to reach a specific goal all we want, but the first time he does anything it's all on his own terms. It was like that with rolling over, sitting up and kneeling, and now we are beginning with standing. Don't get me wrong, without the PT he would not have learned how to do it, but we knew the first time he did this it would be a total surprise.

That's our boy, just full of amazing surprises :)

- P, J & J

Thursday, December 25, 2008

Merry Christmas!

Just a few quick pictures before we head over to Gramma and Papa's for Christmas dinner:

Opening my gifts Christmas morning
A random Joey/Santa pic from the nursery school festivities.

That's Joey's cousin in that belly!!! Little Gemma or Ty is due any day now, we're all so excited!

My new wheels, care of Zia Jodi and Uncle Jason. New Leafs jersey care of Mommy and Daddy!

Merry Christmas everyone!
- P, J & J

Wednesday, December 24, 2008

No News = Good News? I'm Not so Sure.

Just a quick update:

I called the geneticist's office yesterday and left a message for the wonderful receptionist. She called me back right away, told me that I was correct in my assumption that Dr. V has been off and still is. She asked me to call her back next Wednesdsay, but was non-committal when I asked if the test results were back. So of course my imagination is running wild, thinking they are back, it's not good news and the Doctor has to meet with us personally to discuss. I could be wrong, but the last time we went through this in February my suspicions were dead-on.

So not to be a total downer this Christmas eve, I should also mention that Jason and I gave each other our gift to each other yesterday. We got free Leafs tickets and decided to make a night of it and stay at the Royal York in Toronto. The weather was crazy, so it was a good thing we stayed overnight. Our suite at the Royal York was lovely, with a view of the harbourfront and Union Station, looking so classically Christmas with the snow falling. I can't even describe how comfortable the bed was and we both got a great sleep, followed by a fantastic breakfast buffet the next morning and valet parking to bring us our car. It was a great treat, and despite the Leafs losing 7 - 2 we had a wonderful time.

For those of you travelling this Christmas eve please be careful, wherever you are. I know the weather here is going to turn icy. I am thoroughly enjoying (okay, becoming addicted to!) the live feed on the side of this page showing where people are logging in from, some places I recognize and know who you are (Hi Tanya! Hi Sarah and Avery! Auntie Eileen? Is that you?) and others are a mystery and my curiosity is getting the better of me (Ottawa? Port Elgin? California????). Jason says I need to get rid of that thing ASAP!

- P, J & J

Tuesday, December 23, 2008

The Ladder

I wanted to post some pictures of the ladder Patricia's husband built for Joey. Here is the "real" one that he uses at physio, which costs $450 USD:

And here is the one that Patricia's husband made. And note the little bells hanging on the rung near the top, Patricia made those for Joey as a Christmas gift:

The homemade one is SO much more sturdy, it is just so perfect. As our contribution we will sand it a bit more and stain/seal it in the spring, so that it can be added to the supply of equipment that is loaned out to other families once Joey is done with it. Every time I look at it I am just so amazed, and reminded of the wonderful people we have been meeting along the way. We are seeing Patricia today for our last physio session before Christmas, and I have a card and gift certificate for her husband as a thank you.

Tonight Joey is having another sleepover at Gramma and Papa's house, and Jason and I are off to our gold seats at tonight's Leafs game in Toronto, followed by a night at the Royal York hotel. Yay! We're very much looking forward to it, and then tomorrow the Christmas craziness begins!

No response from our geneticist as of yet regarding the myotonic dystrophy test. I emailed her over a week ago and she didn't respond, which is very unusual for her so I can only assume she is on holidays. I'm going to give it one last try and call her office this morning and see if I can find anything out, if not I suppose my goal of having the results before Christmas won't be realized.

- P, J & J

Sunday, December 21, 2008

Ups and Downs

It's been a pretty emotional week for me. I had planned to update a few days ago after Joey's nursery school party, but it didn't go quite as planned so it was tough to come here and write about it.

As I had mentioned before, I was so excited to attend Joey's nursery school party on Thursday, as I never get to see him there with the other kids because Gramma Phyllis takes him every week. I was the first parent to arrive, grabbed a seat front and centre with my camera ready to take some video because the kids were doing a little presentation, singing 2 Christmas songs. There was a curtain dividing the room, and as soon as they drew it back and the kids started singing I did NOT have the reaction I anticipated. There were all of these adorable 2.5 - 5 year olds, a bit chaotic as they were singing but adorable nonetheless. Then there's my Joey, in Gramma Phyllis' arms, not singing, not even standing, and Gramma is singing for him. My heart broke in two, I'm sure of it. I froze, shocked that I was not reacting the way I thought I would. I wanted the floor to swallow me up and I felt horrible for thinking that. For the first time, there was my beautiful baby boy, among a group of his peers who are "typical" and it became painfully obvious that my child is extremely disabled. Somehow I managed to make it through with a smile plastered on my face, I even made it through the little social with Santa that followed, but once I helped Gramma and Papa Roy get Joey packed in their truck (I was supposed to go grocery shopping that afternoon) and I got in my car I started bawling, and just couldn't stop. I skipped the grocery store and headed straight home.

Something inside me definitely changed that day. The denial I've been living with the past 2 years is now gone and I am right in the thick of full-on grief. Great timing, huh? I've always loved Christmas, and I still do, but this one is already pretty emotional for me. But where there is a "down", it always seems to be followed by an "up"....

Joey started working with his PT assistant "P" in October. he instantly formed a bond with her, and now it's obvious to me that she has formed a bond with his as well. I could tell you the story of the amazing things she has done for us in the past few weeks, but instead I will paste below the letter I sent to her boss, which sums it up pretty nicely:

Dear Paul,

My name is Pamela and I have a 2 ½ year-old son named Joey. He was born with hypotonia, and since his birth we have also discovered that he is globally developmentally delayed. Since then he has been assigned the diagnostic label of hypotonic cerebral palsy. We have been involved in all sorts of therapy through various organizations, first through the neonatal Follow Up Clinic, and now we receive services from CCAC, CTN and SCS. Throughout this journey we have faced countless obstacles, and both my husband and I have had to become aggressive advocates for our son in order to obtain the programs and services that he needs, programs and services that quite obviously suffer from a lack of staff and resources. I am always the first person to speak up or express my dissatisfaction when we are not getting something we need but I try to balance that with recognizing when we receive outstanding service, which is why I am writing to you today.

J has been Joey's physiotherapist since December of 2006, when Joey was only 9 months old. From the very first time we met with her I have been completely impressed by her professionalism, knowledge and commitment to Joey's care. In fact, with all of the therapy Joey receives, including OT, SLP, nutritional support etc. I am happy to tell you that PT has been the most consistent, and that is due entirely to J. Recently Joey had a Bayley Assessment done, and the one area that he excelled at above all others was his gross motor skills, and I am positive that it is because of J's work with him over the past 2 years. She has always known when Joey only required maybe one or two visits a month, and also recognized based on his development when he needed more intensive blocks of therapy and made sure that it happened. In addition to the PT she provides she has been such a great support to me personally, offering advice and resources when asked, and sometimes just providing an ear to allow me to vent about some of the difficulties we have faced. All of these things combined make her an excellent therapist and an asset to your team.

Recently J identified Joey as a child who would benefit from the additional support of your newly added PT assistant, P. Joey began working with P on a weekly basis in October of this year. Just when I thought our service was as great as possible, I now find myself extremely grateful for Patricia's work with Joey. Joey formed an instant bond with Patricia, he behaves towards her as he only does with close family members, and P's response to this has been to treat Joey the same way. He has excelled under her care, gaining more skills in a 3-month period than I thought possible. Her wealth of experience has benefitted Joey so much, and we were so pleased to learn that Joey will continue to work with her in the New Year. P has gone above and beyond her job. Joey really enjoys a particular toy we use during his sessions, a simple set of colourful elastics with bells attached, and when I mentioned to P that I was having difficulty finding the elastic to recreate the toys she took it upon herself to buy white elastic, dye it herself with food colouring and sew the bells and Velcro on, giving a set to Joey as a Christmas gift. There is also a piece of equipment that we use for his sessions, the "ladder", that we have actually looked into building or purchasing ourselves, but it costs about $450, and given that we work full time and are raising a child with extraordinary needs finding the time to build something similar was very difficult. Tonight I received a call from P telling me that her husband has built a replica of this ladder for Joey to use as long as he likes. I don't think it's possible for me to express in words how amazing this was for her to do; I'm not sure how we could ever thank her.

I know it's very easy to simply say "thank you" to J and P, but I wanted to do more, so I have written you this letter hoping they will be recognized for their dedication and obvious passion for the job that they do. I also wanted you, as their supervisor, to be aware of the wonderful things your team does in the community.



Most people, when they have a child, see only a few people added to their life because of it. Maybe a pediatrician, or some new Mommy friends at a playgroup. At last count I would say we have met about 30 new people because of Joey's disabilities, and some of these people truly are angels on earth. Can you imagine our amazing "P", who has know Joey for all of 3 months, having her husband BUILD this piece of equipment for Joey??!! And wait till you see it (it's still at Gramma and Papa's house right now, but I will post pictures later). The one he uses at therapy is nice, but the one Patricia's husband built is even BETTER! When she told me about it I thought perhaps he slapped something together with scraps, which would have been fantastic in and of itself. but no, this thing is of the highest quality, and I know Joey will get so much use out of it.

Having a disabled child also changes the people around you, and your relationship with them. No one, not even she herself, thought that Gramma Phyllis would become the HUGE part of Joey's life that she is today. I wish you could have seen her up there with Joey during that Christmas presentation at the nursery school...instead of simply enjoying her retirement in Florida, which is where she and Papa Roy would be at this time of year if it wasn't for Joey, she was up there supporting Joey, and by doing so supporting both Jason and myself. And then there's Papa Roy, who has no biological connection to Joey whatsoever, and you would never know it. On Friday we had several appointments with Joey all over the city in the midst of a bad snowstorm. Papa Roy provided me with my own personal escort, following my car around in his truck from place to place, waiting patiently for Joey's appointments to end, just to make sure we got everywhere safely. I'm quite sure he could have done lots of other things for that 6 hours, but he lovingly wanted to make sure we got where we needed to safely.

~sigh~ So we are very lucky in so many ways, and I know this. And the luckiest thing is that we have this gorgeous, happy, sweet, loving boy who has had an amazing impact on everyone he meets.

- P, J & J

Monday, December 15, 2008

Joey's Weigh-In

A short but very sweet update:

In September Joey weighed in at 21 lbs 16 oz, and today's weight was 23 lbs 1 oz! A gain of just over a pound in 3 months is HUGE for this little guy, I am so thrilled! We knew he had probably gained a bit but with all of the illnesses he's had over the past couple of months I thought he may have lost much of what he had gained.

Needless to say our pediatrician is very happy with the gain and there were no further talks of a g-tube at this time. And to top it all off he just ate a full lunch for me without a struggle. It's a good day!

- P, J & J

Sunday, December 14, 2008

Joey's New Room

Christmas came early to our house! We needed a new chair in Joey's room, as we still feed him bottles at least 2x/day. The chair we were using was great when he was smaller but not so much now that he's 2.5 years old! Enter Grandmere (my Mom), who gave us the lovely early Christmas gift of the glider and ottoman you see below! We looked everywhere for the right chair to meet our needs and found this one.

It's very comfortable for Joey and I both, and I much prefer the look of this to the traditional glider with the exposed wood frame. So THANK YOU GRANDMERE!
A couple of weeks ago I decided that the pale lavender on Joey's walls that has been there since we moved in had to go, so I repainted his room. The colours were inspired by the quilt, and I thought it was a nice colour that was a bit more "big boy". I took these pictures quickly with my little point-and-shoot camera, so they're not the best quality, but I assure you it looks better in person.

I made this photo collage of Joey's grandparents and Zia, and put it above his crib so they are "watching over him" while he sleeps and he will always know he is loved so very much.

My Grandmother made these curtains for Joey's nursery in our old house. I have a feeling they may be moved to our spare room and a valance will take their place, as Joey likes to reach out of his crib and play with the blind.

So finally, over a year after moving in, Joey's room is done!

We have a busy week coming up. Tomorrow is our visit with the pediatrician. We're anxious to see how much weight Joey has gained since his last weigh-in in September. He was doing very well with eating for the past several months but with all the recent colds he has had his appetite has gone downhill.

Wednesday we have our new OT and the dietitian coming to the house. I've identified one of the goals I'd like to work on, which is getting Joey to hold his own bottle or sippy cup and feed himself. So I need to go through our storage bins and haul out all of the different bottles and sippy cups we've tried over the past 2 years and see if there's anything that might work.

Thursday is a Christmas party at Joey's nursery school, which I am very excited about! Since Gramma Phyllis takes him every week I don't really get to see what happens (though Gramma is amazing at telling me all about his day!) so I'm looking forward to watching Joey with the other kids.

And Friday is his last day of Kindermusik for 2008, which Gramma Phyllis also takes him to. Afterwards it's off to the orthotist to have his new orthotics adjusted, which also means a trip to the shoe store for bigger shoes.

And to end this post here are some recent pictures of Joey, in all of his adorableness:

- P, J & J

Wednesday, December 10, 2008

Mystery Overall Fairy

Who are you, mystery overall fairy?

I would like to thank you for the three pairs of gently used overalls you placed in a bag and tied to my front door! 2 sized 3T and even one 4T, all very cute and exactly what we were looking can I possibly thank my anonymous benefactor?!

I have a feeling I know who it is but my conversation at Saturday night's Christmas party was clouded with a few chocolate martinis, so I will have to wait and see if I'm right...

- P, J & J

UPDATE: I was right! Thank you Susie, and thanks Jakob for lending us the overalls you once wore, and thanks to Charlie for lending us the overalls you have yet to wear!

We have some pretty amazing friends.....