Happy 3rd Birthday to Joey

On April 1st Joey turned three years old. We didn't have a big party this year, as we were leaving for Florida the next day, but we decided to have a low-key pool-side BBQ while on vacation. I can't believe it's been three years since Joey came into our lives! In some ways it feels like yesterday, but in other ways I can't remember what my life was like without him in it.

And in keeping with the tradition he started last year, a few days before his birthday Joey went on a bottle strike. For the majority of 3-year-olds this is not a huge deal, in fact there are few 3-year-olds still drinking from bottles (I know this because of the judgemental stares I get from people while giving Joey a bottle in public). But for Joey this is a huge source of nutrition completely cut out of his diet. Up until now Joey would drink about 2 cans of Pediasure Plus (1.5 calories per ml.) from a bottle per day, one in the morning and one before bed, but now he's decided he wants none of it. Last year he replaced this with eating a huge amount of varied foods...this year, he's just increased the amount of the 3 or 4 things he already eats, namely Minigo (strawberry only), pudding (chocolate only), yogurt ("pink" flavours only) and blueberry baby food. This new phase is troublesome for so many reasons...Joey still does not feed himself at all, and does not eat a lot at one sitting, so that means he has to be fed at least 6x per day, which is time consuming, and he will only eat for a select group of people (right now that's Jason, Grandma Phyllis and to a lesser extent, me). Joey's caloric intake has dropped from about 1200/day to about 900/day, if we're lucky. I'm not even sure that 1200 calories a day was enough, given that he is still EXTREMELY thin and weighs less than 25 lbs at 3 years old.

So the light at the end of the tunnel, if things don't take a major turn for the better, is that we received notification that our appointment with the GI clinic at Sick Kid's hospital in Toronto for a G-tube consult is May 19. I can say for sure that if things don't improve drastically we will be going ahead with the surgery, and Joey will likely have a G-tube in place sometime this summer.

I've always said that pictures of kids covered in food were completely disgusting and should be viewed by the parents only, but since Joey has such a negative relationship with food I tend to celebrate any milestones, such as this little beauty:

Smiling while covered in chocolate pudding and strawberry Minigo...yummmmy!

Joey did extremely well on the flight from Toronto to Tampa. We had some very nasty turbulence that scared me out of my mind, but didn't bother Joey and actually seemed to act as a tranquilizer on him:

Joey also got a chance to sport his new fancy schmancy Superman swimsuit on the beach, courtesy of Zia Jodi and Uncle Jason for his birthday:

Last but not least, while we were in Florida decided to go ahead and get an "elective" ultrasound, something not readily available here in Canada. This was for the sole purpose of finding out the sex of this baby, since I am one of those people that would find out the sex at conception, if there was a way to do so. I was 15 weeks exactly, and the person doing the ultrasound said right away that this baby, much like her older brother, put her goods on display immediately and she could tell us that it's a GIRL! Joey is getting a little sister :) Here are some of her first pictures:

Umm, apparently since there's nothing "pointing back" towards the arrow this indicates that the baby is a girl. I'll just have to trust them on that one, since this just looks like a messy blob to me.

Now this one at least looks like an outline of a baby :)

So Joey is still in Florida with Grandma and Papa Roy for another week, lucky guy. We're both enjoying some lazy time but I miss the little guy terribly. Only 5 more sleeps!

- P, J & J

We're Still Here

I had to take a bit of a hiatus, this pregnancy is kicking my butt! It is infinitely more difficult being pregnant when you already have a child at home, especially when that child has extraordinary needs. Add working 4 days/week, a nasty case of all-day sickness and exhaustion like I have never known and you get a pretty good idea why I just haven't had time to update our blog.

The good news is that this pregnancy is completely different than my pregnancy with Joey in almost every way. As of Monday I will be exactly 3 months along, 1/3 of the way there! The sickness is fading away, thank God, and the exhaustion seems to be subsiding a little bit. I had my first OB/GYN appointment last Monday...Joey and Jason both came with me and got to hear the baby's heartbeat for the first time, very exciting! I was surprised to hear it at 10 weeks, They couldn't find it with Joey until after 13 weeks. Normally you don't get referred to an OB/GYN until 28 weeks, until then you are just monitored by your family doctor, but they have classified me as "high risk" because of Joey so I was referred right away. Our OB, Dr. S., is AWESOME. Very understanding, very thorough and says all the right things to make us feel at ease. Last week he decided I should be referred to a high-risk OB at Mount Sinai Hospital in Toronto, just for a second opinion and to talk about perhpas doing a c-section this time, and possibly even an amniocentecis.

I have opted for the Integrated Prenatal Screening, which involves an ultrasound and bloodwork at 12 weeks to determine if there is an increased risk of some disorders like Down Syndrome or Spina Bifida. Of course I had all of this with Joey (minus the amnio) and all tests came back completely normal, so while they are great for detecting some things they obviously can't detect everything. As I've said before, we don't actually know what is wrong with Joey, so there is no way to test for it with future kids.

On to Joey news....what do these three things have in common???







They are the first non-fabric objects Joey has brough to his mouth and chewed on completely on his own. Maybe not a huge feat for most kids, but given that Joey has NEVER voluntarily brought anything other than fabric to his mouth this is a very big deal.

We've made some slow but steady progress with the walker as well. Here is a video of Joey in his walker about 2 months ago....he didn't really "get it", couldn't control it and didn't understand how to move himself around:

Here is a video taken about 3 weeks ago in the gym during physiotherapy. Again, HUGE progress for Joey! He can actually steer himself to where he wants to go, in this case it was the wooden rack with the velcro bells, which he loves:

In other Joey news we had an appointment with a Developmental Pediatrician, Dr. J. (we've been pretty lucky so far not to have more than one doctor with the same last initial!) on February 19. She spent about 2.5 hours with us but couldn't really offer anything further in regards to our search for a diagnosis. She will be changing his working diagnosis from Global Developmental Delay to something like Intellectually Disabled, which implies a more permanent condition. The Hypotonic CP label will stick for now, even though everyone unanimously agrees he likely doesn't have CP at all. It's best to get as close to an accurrate diagnosis as possible to save us time...right now we have to re-apply for a lot of things, like the disabled parking permit and money for a mediator, every few years because his current diagnosis doesn't necessarily mean he is permanently disabled, lots of people with CP go on to get a PhD, and many people can outgrow a global developmental delay. Dr. J. has recommended a follow up MRI to be done at Sick Kids, as well as a consult at Sick Kids for a G-tube. We're still not sold on that idea but we're willing to go for a consult.

Last but by no means least, in honour of my Grandmother who passed away Febraury 26, 2009, here is a picture of her with Joey when he was a newborn. She was the only Great-Grandparent Joey ever got to meet. She loved babies so much, and I am so sad she will not get to meet this new baby in September. But she did know we were expecting. I was able to visit her 3 days before she passed away, and when my Aunt reminded her I was coming and that I was pregnant my Grandmother told her that she was "praying for this baby to be healthy", so we're in safe hands.

We love you, Grandmere xxxxxxx

That was Fast!

Joey is going to be a big brother! Apparently all we have to do is think about having a baby and it happens, for which we are very thankful but also very stunned. We knew what we were doing but really didn't expect for it to happen so quickly, so it took some time for us to adjust.

Joey's new sibling is expected to make an entrance around September 28/09. Of course we are thrilled but also terrified, this is going to be a long pregnancy filled with uncertainty and stress and worry. Because we don't know why Joey is the way he is we also don't have any way of knowing the odds of having another child with the same issues. We've been given the same odds as anyone else....5%

There are also the logistics of having Joey and another child, who we will assume for arguments sake will be "typical"...how on earth am I going to be able to carry a 3-year-old and a newborn everywhere? How am I going to carry Joey around when I'm 8 months pregnant? It's not as though it's just the occasional picking up and carrying, it's any time we need to leave where we are! Living in a 4-level sidesplit house doesn't hlep much...It's basically going to be like having twins...both will need to be fed, both will need to have their diaper changed, both will need to be carried everywhere.

But then there is the fact that Joey will have a little brother or sister to learn from, and that child will be so blessed to have Joey as a big brother. I'm excited about having a newborn again, I know a lot of people prefer the one or two year old stage, but I am truly a baby person.

So, boy or girl, Jason and I are excited to welcome the second, and last, baby to our family. Joey doesn't have a clue what is going on but I know he will love having a sibling.

- P, J & J

RSV

After a chest X-ray and a thorough examination by our family doctor it has been determined that Joey doesn't have croup or pneumonia, he has bronchiolitis caused by RSV (a common respiratory virus in kids). He hasn't gotten any worse, and Advil seems to calm the coughing well enough. He's missed nursery school this week, along with his very first walker class which started yesterday, since he would have been around other kids and I didn't want to be "that" Mom who exposes her sick kid to other kids, but today he has physiotherapy and we're heading out soon.

This poor kid just can't catch a break! It seems like we've been on a cycle since October of two weeks sick, one week healthy. Luckily Jason and I have avoided catching this one, it's no fun caring for a sick kid but it's REALLY no fun if we're sick too. So hopefully he'll continue to improve over the weekend and be ready to go back to nursery school next week.

Joey still hasn't met his new cousin, but hopefully he'll be well enough by Sunday so Jodi and Jason can bring him over for a visit. I can't wait!

- P, J & J

Nostalgia

I'm all warm and fuzzy about Baby Ty wearing some of Joey's newborn clothes and of course I had to take pictures. This is an outfit that my mom bought for Joey, he didn't fit into it until he was about 6 weeks old. He weighed 6 lbs 11oz at birth:

And here's Ty, 7 lbs 3 oz at birth, fitting into the same outfit right away!

I remember when Joey was born and all of the medical professionals going on about his "low muscle tone", and me, not having anything to compare him with, thought they were all crazy. I kept saying "but he's just a baby! He's not going to sit up on his own or anything!" but then I dressed Ty the other day and wow, did I feel the difference. That resistance in his little limbs, where you gently have to pry the arms and legs down to get them into the clothes...Joey really never had that. he was my little dolly, I could get him easily into anything because he was so loose and floppy. Now I get it.

So my poor baby is dealing with the croup I think. I took him to the doctor on Monday and she suspected early stages of croup or even possibly pneumonia, but it wasn't bad enough to send me rushing to the hospital. The Doc gave me a requisition for a chest x-ray and told me to take him in if he got any worse. Well, it's officially worse. He coughed so badly last night that it triggered his extremely strong gag reflex and he threw up his dinner. He has been coughing all night but like the sweet kid that he is he didn't complain, just fell right back asleep each time. I'm still waiting for him to wake up in order to decide about bringing him in. It's -31 here today, so I don't look forward to bringing a sick kid out in this weather. And then there's the method of x-raying the chest of a small child...he's had it done once before and basically they put his arms over his head and enclose him in a big tube sitting upright, with this plastic case snapped tight around his chest to keep him still. Ugh. Jason calls this machine the "iron maiden" and really, it does resemble some sort of torture device. Joey was only 7 months old when he had it done last time and I remember him bawling and me bawling, it was awful :(

Wish us luck!

- P, J and a croupy J

Joey's Cousin is Here!

Baby Ty made his entrance to the world 10 days late on January 10, weighing 7 lbs 3 oz!!! Jodi had a rough labour which ended up in a c-section, but Ty is absolutely perfect and Jodi is recovering amazingly well. We are so excited to welcome him to the family! Jason and I are officially a Zia and Zio (aunt and uncle in Italian). We went and visited last night and met him for the first time, he is incredibly adorable and very laid back. Here are some pictures of the new little guy:





The lighting in the hospital room wasn't the greatest to work with, so he looks a bit more red and his hair looks much darker than it is in person. I ended up changing most of the pictures to black and white to minimize the redness so you could see how truly adorable he really is!

Unfortunately Joey hasn't met Ty yet, and probably won't for a few days. He's not feeling the greatest, and with Papa Roy having pneumonia and Gramma Phyllis coughing a lot too I'm worried he may have something contagious so he'll have to wait until he's better to meet his new cousin. I have a doctor's appointment for myself today, and while I generally don't run to the doctor's office for every sickness Joey gets (and he's had A LOT of colds since starting nursery school) this one is accompanied by a fever that spikes pretty high at times, so I think I'll get him checked out just in case if he wakes up again this morning with a fever.

Welcome to the world Baby Ty!

- P, J & J

Happy New Year!

Now that I can see how many visitors come to our blog regularly I feel the pressure to post more often. Life is now in a bit of a lull, so I have time, but I know we'll go back to the craziness soon. It feels like the holidays officially end tomorrow and then we can all hunker down for a long winter. Normally I would hate this time of year, such a long stretch until April when we go to Florida, but there's so much to be excited about!

First, Jason and I will be a Zia and Zio very soon (aunt and uncle, in Italian) and Joey will be getting his first cousin. I honestly expected this baby would have been here by now, but we're all still waiting anxiously.

Second, we're going full-steam ahead with plans to have baby #2 (second and definitely last baby for us). I hope we're blessed like we were with Joey, there really wasn't much work involved in his conception...we were married at the end of March 2005 and I was pregnant by July!

It feels like our entire world has done a complete roundabout in just under a week. I'm looking forward to getting back into our normal routine, and to welcoming a new member to our family sometime in the future, something I couldn't say for sure just a week ago. It's a gamble, since we really don't know what's "wrong" with Joey, but we're usually pretty lucky...we did get married in Vegas after all. And how could we not have another child, look how gorgeous the first one is:

We DO make beautiful children :)

- P, J & J