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!



Thanks for checking in!

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!

Speech Therapy

I just received a phone call from the Ottawa Children's Treatment Centre informing me of Josh's appointment with a Speech therapist. I didn't even know that he had been referred to a speech language pathologist so one of two things must have happened. One: Dr. Ponesse (Josh's child development specialist) had gone ahead and sent in a referral last fall knowing that there was a long wait list -- even though he told me that he would wait until Josh was 18 months old as that age was a better indicator of speech development. Or Two: Josh's physiotherapist spoke with Dr. Ponesse after his last appointment with her a couple of weeks ago.

Josh's PT and I had a brief discussion about Josh's speech. She had asked if he had any words yet and I had mentioned that he has a few. He says mama, dada and gaga (for garbage) consistently. He babbles a lot but there's no other words that he uses consistently. I've gotten a 'ow' for cow and I've gotten a 'da' for dog, and I swear once he said 'boy' but these are all isolated incidents that I haven't been able to get him to repeat. An 18 month old should have about 20 words that they use consistently. Josh is 17 months old so I guess he's a bit behind.

He does do some animal sounds though. He can do an elephant, a monkey, and a lion/tiger (they both get the same sound). Yesterday I got a 'oof oof' for a dog and a 'me' for cat.

One thing I am not concerned about is Josh's comprehension of language. He can definitely understand what we are saying and is able to follow simple instructions. So that's certainly a plus.

Josh's assessment with a speech therapist is on Feb. 2. I can't imagine how that assessment is going to go since Josh is so shy. It's really hard to get much out of him in that environment so I imagine a lot of the assessment will be based on what I tell the therapist. I've already started a list of his words and sounds. At any rate I'll be sure to let you all know how the assessment goes.

In the meantime I'll leave you with a couple of pics of Josh playing with one of his favoutie stuffed animals. Thanks for checking in!

My Son Won't Look Like A Hippie After All

You may recall from a previous post that the last time we took Josh to get his haircut, the top of his ear was cut. I was certain that that incident had destined Josh to a childhood with long shaggy hair as I could not imagine that Robb would ever let me get his haircut again. To my surprise I was wrong.

It's been about 2 months since Josh's last haircut and he was starting to look a little shaggy and really needed a trim but I had no intention of bringing up the subject with Robb...yet. I figured I would wait a little longer, give him some more time and then maybe he'd feel comfortable with taking him back. But Robb beat me to it. He mentioned that Josh's hair was getting long and we should probably take him in to get a trim. I looked at Robb, mouth gaped open, not believing what I had just heard. I made an appointment the next day and Josh got his hair cut last weekend - without incident :)














In other news, Josh saw his physiotherapist on Jan. 14 - his first appointment with her since he started walking. He was pretty shy in the beginning and was reluctant to show off any of his new tricks but he eventually came around and did some walking. He didn't walk as much or as well as he does at home but enough that she could assess him. So far his walking looks good - symmetrical and he doesn't seem to be dragging his right foot. She even took him over to the stairs to see how he would do and he did them like a champ! So far everything is looking great and I couldn't be happier.

There's still a few things that he's not doing yet such as crouching down to the ground and then standing up again (he can crouch but his legs aren't strong enough to stand himself up). He's also not pushing himself up from four point (crawling) to standing without using a piece of furniture to hang on to. I don't see this as being a big deal because I know he will get there eventually, but since he hasn't developed these skills yet he has dropped below the 5th percentile on the gross motor development chart. Again, no big deal but it means we're not done with physio yet. We go back on March 11, so we'll see how he's doing then.

Not much else to report....we did manage to take Josh out sledding early last week before the deep freeze hit us. He loved being in his sled and had a great time and we enjoyed watching him have so much fun. Hopefully once the frigid temperatures let up we can get him outside for some more winter fun.

2008 Was a Good Year

A Very Merry Christmas and A Happy New Year

I had been hoping to post this sooner but I just haven't had much spare time lately. Josh hasn't been sleeping well for the last week or so and he has never been a real good sleeper to begin with, so that translates in t0 even less sleep for me. I'm not sure why he isn't sleeping - it's probably related to teething, but it's hard to tell for sure. Hopefully this will pass soon so we can both get some rest.

It's hard to believe that another Christmas has come and gone. I hope you all had a wonderful holiday. Our Christmas was lovely. Josh was a bit overwhelmed with the whole thing but he does seem to enjoy all his new toys. Josh was actually quite cranky on Christmas day. He's been teething and so he has good days and bad days. Christmas was a bad day but we made the most of it, saving his gifts for his less irritable moments.

The rest of the day was pretty low-key. Josh and I spent a couple of hours at Robb's sister's place - while Robb slaved away in the kitchen :) - and when we returned we enjoyed a fabulous turkey dinner.

Robb's whole family got together on Boxing Day to exchange gifts and enjoy a nice meal at Robb's brother's house in Carleton Place. A good time was had by all and thanks to Christina for cooking a delicious meal.

So 2008 has come and gone. No one knows for certain what 2009 will bring but I wish you all the very best for a happy and healthy new year.