A Burp, A Fart And A Party

Okay so I couldn't decide on what to title this post but I finally decided on "A Burp, A Fart And A Party because, well, it made me laugh." It could have equally been titled, "So What Exactly Is Daddy Teaching You?"

Since I started back at work last August I have noticed that Josh does some rather unusual things and I am certain that I have my husband to thank for it. After Josh has a bowel movement and I get that first whiff as he scurries by I'll say to him, Josh, did you have a poop?" He'll immediately laugh, run over to me, grab my head and pull it down to his bottom until I sniff his bum. (Imagine my surprise the first time this event transpired) He then scrunches up his nose and laughs and then runs off. Man, he's such a boy.

In the last several weeks I have noticed some new but similar antics. Whenever Josh burps or toots I have been in the habit of saying, "Oh, excuse you Joshua". Well, lately he has started giggling every time he burps or toots and then the giggle is immediately followed by abdominal tension as he desperately attempts to re-create the event. Every once in a while his effort does result in a second burp or toot again followed by uncontrollable laughter. Which leads me to question what exactly goes on around here when I am at work? At any rate, I'm sure the two of them have a blast.

Now on to the party. On Sunday Josh and I attended a party hosted by the cardiovascular surgery department at CHEO. (Robb really wanted to be there too but he was coming down with the flu and he didn't want to spread his germs) It's an annual event that serves to celebrate our heart kids. It's also a great opportunity to meet and connect with other heart moms in our community. I was really looking forward to this party for just that reason but also it's always nice to see Dr. Maharajh and is amazing team. I met some amazing heart moms that day and some even more amazing kids.






















I figured Josh wouldn't really be in to the party because he's still a bit young to really enjoy a clown and his magic tricks and for the most part I was right. Hopefully next year he'll enjoy the show. After the clown act was over Josh did come out of his shell a little bit, running around, flashing people his sheepish grin and just generally acting silly. Maybe it was a sugar high from cake and juice :) All in all we had a great time and I'm already looking forward to next year.


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How Quickly They Catch On

I just wanted to share with you a couple of breakthroughs we had this week with Josh. Since his speech assessment a couple of weeks ago I have started introducing some signs (sign language) to help assist with his communication. He had already started to use a couple on his own -- he had created a signal to indicate that he was hungry (he brings his hand to his mouth) and a signal to indicate that he's all done (both hands out in front of him, palms up). I started using the sign for more whenever I asked him if he wanted more to eat and it's amazing how quickly he caught on. Last week Josh and I were sharing a timbit (a donut hole for my American readers) and when the timbit was all gone he looked at me with the saddest puppy dog eyes and signed for more. I asked him if he wanted more and he gave me the biggest smile and kind of nodded his head. He doesn't nod his head yes yet, but he came darn close that day. I can not even begin to explain how happy and proud I was of him, and he too was proud of himself that he was able to express himself in a way that I could understand. By the way, he absolutely got another timbit :)

The second breakthrough came yesterday when we were at the grocery store. Josh was sitting in the shopping cart and I was in the process of digging out an animal cracker from his diaper bag. Robb had just left to go grab an item we had forgotten a few aisles back. As Josh was waiting for his snack he was sitting there watching the people walk past, then when all of a sudden he chirped 'hi' to a young man walking by. He has never said hi before and as I was standing there dumbfounded, wondering if he had just say, hi the young man replied, "oh, hi." So he did! He did just say hi! And then he went on to say hi to three other people before biting the head off his elephant animal cracker. It was really awesome to watch and I felt bad that Robb had just missed it. It's funny how we get so excited about the little things. But then it's the little things that make life so special :)

I'll leave you with a picture that I took of Josh the other day eating his afternoon snack....and yes that's broccoli. I gave him a choice of either broccoli or graham crackers for his snack and the crazy boy chose broccoli. I sure hope his love of vegetables continues!



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CHD Awareness Week

This week is Congenital Heart Defect Awareness Week so I thought I would start off this post with some CHD facts:

* CHD is the #1 birth defect, yet is the least publicized and is the leading cause of birth-defect related deaths.

* At least 35 different types of CHD's have been identified. There is no cure for any of them.

* About 1 out of every 100 babies are born each year with some type of CHD.

* Some babies may be diagnosed before birth or at birth, some not until days, weeks, months or even years later. Sadly too many are not diagnosed until after death.

* This year approximately 4000 babies will not live to see their 1st birthday because of CHD's.

* 70,000 children are born with a CHD each year in Canada and it is a proven fact that the earlier the CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. But still newborns are not screened for CHD's.

* 10-11% of babies born with a CHD have TGA -- the same CHD as Joshua.

* Nearly twice as many children die from CHD's each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is 5 times higher than funding for CHD's.

Being that it is CHD Awareness Week I find myself thinking a lot about how Josh's life began. Josh's heart defect was not detected on ultrasound nor at birth and since he presented no signs of heart failure until he was 16 days old Robb and I had a seemingly normal introduction into parenthood as we brought our newborn son home.

Of course that all changed on Sept. 10 2007 when Joshua very dearly died because of his undetected heart defect. That day was extremely difficult; full of extreme sadness, disbelief, guilt and uncertainty, and though I could never have admitted it at the time I think a part of me knew that there was a good possibility that Josh would just not make it. And I remember thinking to myself how grateful I was to have had those two weeks with him...blissfully unaware of the trouble that lay ahead. Thankfully Joshua pulled through but even I couldn't have imagined that he would be doing as well as he is today.

It has been suggested on numerous occasions that an echocardiogram should be performed on all newborns as a screening process for CHD's. As I was contemplating whether or not our already overburdened health care system could sustain the added cost I realized that I need look no further than my own son.

If Josh's heart defect been detected at birth do you know how many times we would have had to go to CHEO for follow-up appointments since his surgery? Three. One follow-up with Cardiovascular surgery and two follow-ups with his Cardiologist. That is seriously mind blowing given the countless number of appointments I have taken him to in the last 16 months. Not to mention two more hospital admissions and a second surgery to resect a portion of his bowel. And then that's not even counting the physiotherapy, occupational therapy and now speech therapy. All these extra appointments and services are dealing with the long-term complications associated with the delay in diagnosing the heart defect. How much money would our health care system have saved if Josh had received an echo at birth?

I am so proud of Joshua and I am honoured to be his mom. He has taught me so much about myself and about life in general and though this isn't the journey I expected as I entered into parenthood I couldn't imagine my life any other way.

It Has Been a Busy Week

I had hoped to post an update after Josh's speech assessment on Monday, but we have been busy here and I just haven't had a chance.

Josh's speech assessment went very well. He was shy of course but he handled the situation a lot better than I expected. He even managed to say 'mama' in front of the therapist and engage in some of his baby babble.

The results of the assessment is very much what I expected. He does have a language delay and will be followed by a speech therapist but he already has a strong foundation for language development in place so it's just a matter of drawing out the words. His therapist gave me a few tips on how to encourage his language development -- all things that we were already doing so it's encouraging to know that we were on the right track. She's also going to sign me up for a course of some sort for parents of children with a language delay...I think the program is called It Takes Two To Talk. The program starts in April so it will be interesting to see what that is like.

Josh also had an appointment with his pediatrician on Monday for a check-up and another set of immunizations. Josh now weighs 24 lbs and is 32 3/4 inches tall.

Around 2am on Tuesday morning Josh woke up and he felt a little warm. I turned down the heat, lightened his clothing and he fell back asleep only to awake again at 3:30am. He still felt warm so I took his temp...it wasn't bad 38.6 C...a low grade fever so I gave him some Tylenol and eventually fell back asleep.

He woke again around 7am and I knew right away that he wasn't himself. By mid-morning his temp was around 39.5 C, he wasn't eating, he didn't want to play and he was very clingy. He wouldn't even go for nap in his crib - I had to hold him as he slept or else he wouldn't sleep. Naturally I was concerned as any parent would be when their child is running a fever, but I always get this sinking feeling that what it there's a problem with his heart? I try not to let myself jump to that conclusion but I can't help it...it's the heart mom curse I guess. I should mention that the last time Josh would not sleep in his crib...as in he would sleep for hours on end in my arms but would wake the second I tried to put him down...was the weekend before he went into heart failure (which was a Monday). So no doubt that memory only added fuel to my fears.

At 1pm his fever hit 40 C. I gave him another dose of Tylenol and rechecked his temp 45 min later...40.1 C. We were just about to take him over to CHEO when I decided to call Telehealth first to see what they had to say. Telehealth told us that the fever was likely due to the immunizations he received the day before and it should subside in 2-3 days. They also said if his fever hit 40.6 C then take him to the hospital. Otherwise we were already doing everything we could to help treat his fever...Tylenol every 4 hours, dressed in light clothing, offering plenty of cold fluids.

We managed to get through the rest of the day and Wednesday he was more or less back to his usual self - thank goodness! He still had a low-moderate grade fever but was eating again and doing the regular toddler things. He woke this morning with a low grade fever, but it seems to have resolved. I'm glad that stress is done with.

Saturday February 7th kicks of CHD Awareness Week. I designed and created a bracelet in honour of Joshua and it is my hope that wearing it will help raise awareness for congenital heart defects.



The 16 blue crystals symbolize the primarily deoxygenated blood that had been circulating through his body for the first 16 days of his life before we knew about his heart defect.

The 5 purple crystals symbolize the mixing of oxygenated and deoxygenated blood that essentially kept him alive for the first 5 weeks of his life before his open heart surgery.

The 16 red crystals symbolize his 'fixed' heart - one crystal for every month since his surgery. [Okay so really I used 16 red crystals to maintain symmetry with the blue crystals but thought it was interesting that has been 16 months since his surgery. Plus that gives a total of 37 crystals which is the total number of days Josh has spent in the hospital with all three of his admissions.]

I love how the bracelet turned out and I will wear it proudly!