Tuesday, March 10, 2009

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