Thursday, February 28, 2008

Comments and a Funny Story

I apologize to whoever reads this blog on a regular basis for not posting in a few days. This week has been tough – a lot of legal crap going on.

Anyway, I want to thank the grandparents and those wonderful “great” aunts for your beautiful comments posted below. Your love and support mean so much to us. I don’t know how we would’ve gotten through this last year and half without you!

I also want to thank those of you who sent me comments on the blog via email or in person. It’s nice to know that you will be following along these next few months.

For anyone that wants to comment but doesn’t know how – I’m not 100% sure either. However, what I believe you need to do is click on the word “comments”. In the new screen that comes up you can type your comment. I think you need to start a google account first. This doesn’t cost anything or mean anything – it just allows you to comment. I love to read the comments and hope to print them out and start a journal for Bennett.

Funny Story

Bowser is a sweet, gentle, good natured dog that will be turning 11 years old soon. An old man by doggie standards – but don’t tell him that – he still thinks he’s a puppy. This morning, my father was here watching Bennett (which he does every morning to help me out) while I was hobbling around trying to get caught up on some basic housework. He called me over to help get something out of Bennett’s mouth. We had no idea what it was as all he had access to were his toys. Since he can’t crawl or walk yet, I don’t have to worry much about him getting into stuff. Anyway, after prying his little jaws open, I discovered a dog kibble that had been well chewed and sucked on. It turns out that my generous dog had brought him the kibble when we weren’t looking! Nice of him to share. I guess he figured it was the least he could do as Bennett insists on sharing with him during every meal by throwing food all over the kitchen from his high chair.

We have another physio appt. tomorrow. I’ll post an update then. I also promise to post Part 2 of Our Story. For those of you who know what happened next, you’ll know why I’m reluctant to put my experience into words. However, it’s an important part of the story.

Sunday, February 24, 2008

First Physio Appt.

Bennett had his first physio appointment on Friday afternoon. He did very well and was providing the therapist with smiles within two minutes of our arrival. We discussed the nature of Bennett's cerebral palsy and the therapist provided us with a "Gross Motor Function Classification System for Cerebral Palsy". This provides us with a better idea of where Bennett is and the level of cerebral palsy.

According to the therapist and the chart, Bennett would fit into Level 1 or Level 2. Level 1 is the least severe and level 5 would be the most severe.

This is a quote from the chart:

" Level 1 includes children with neuromotor impairments whose functional limitations are less than what is typically associated with cerebral palsy, and children who have traditionally been diagnosed as having "minimal brain dysfunction" or "cerebral palsy of minimal severity". The distinctions between Levels 1 and 2, therefore, are not as pronounced as the distinctions between the other levels..."

So that is good news and more information than the pediatrican provided us with. However, we know that it is early yet and it will be hard to tell the full impact until Bennett is a bit older (over 2 years). A lot of what they use to classify children before the age of two is based on their ability to sit unassisted. Bennett has been an expert sitter since about 9 months - a little later than usual I know but still within the realm of "normal development".

Our first task with physio will be getting Bennett into a crawling position from sitting and making him take his weight on his arms - especially his right arm. We do this using a tube (at home - 4 towels rolled together). Our homework is to get him to do this 6 times from each side per day. We have also been assigned some stretching to do for his arm and leg.

We also worked on a kneeling exercise - Bennett did really well with this one. I've added a short video from our session. Is that not the cutest bum you've ever seen!

You'll notice in the picture that Bennett has his right arm and hand taped (he is sitting on the lap of his good friend John). This is called kinesio taping and is used to get his hand into a better position. It does seem to help - especially with the way he picks up objects. The tape should last most of the week and if it works, the physio will show us how to do it.
It was a good visit overall and we're looking forward to the next.

Saturday, February 23, 2008

3 of My Favourite Guys

Bennett had his first physiotherapy appt. yesterday. It went very well - I'll post more about that later and add some pictures from the session. I also promise to continue with Part 2 or Our Story - I don't want to leave anyone hanging for too long!

In the meantime here is a picture of our first born - Bowser! Also a video of two of my other favourite boys doing what they do best - hangin out and watching tv.

Thursday, February 21, 2008

Our Story: Part 1

I am going to do a couple posts to provide a little background of everything that happened leading up to Bennett's diagnosis. The last two years have been quite a wild ride. In fact, if I hadn't lived through it all, I wouldn't even believe it. I remember people saying - life can change forever in an instant. I've learned just how true that is.


Jim and I got married on September 30, 2000. At least I'm pretty sure that was the date - he'll be quick to correct me if I'm wrong. For some reason, I have a difficult time remembering the day but not the year. We actually tried to start our family before the wedding (I'm sure our beloved family members are shocked - I apologize). I remember naively hoping that I wouldn't be pregnant for our honeymoon - which was a wonderful trip to France.

Needless to say, I didn't get pregnant then or anytime during the next 6 years. We sought medical help after one year and I will admit that I wasn't too worried. After all, we were young and medical science can pretty much do anything, right? What followed was the typical 6 month trial of clomid. After that didn't work, we decided that it was time to see a doctor that specialized in infertility rather than an ob/gyn who typically knows very little about infertility.

To make a long story short, after 6 years, 3 different doctors, 5 iui (intrauterine insemination), 2 ivfs (invitro fertilization) and 1 fet (frozen embryo transfer) we were still nowhere. We had pretty much tried everything medical science had to offer. We were two tired, broken hearted people. Some would ask the obvious question - Why didn't we "just" adopt? First of all, if anyone ever tells you to "just" do something, be very suspicious. Because usually whatever they're suggesting is not easy. The answer is, Jim and I looked into adoption - we considered it very seriously. We went to seminars, we read, we talked to other adoptive parents. However, after much thought, soul searching and consideration, we decided, that adoption, although a wonderful thing, was not right for us at that time.

We decided to try a couple more iui and one more ivf and then evaluate from there. Well, somehow, iui #6 did the trick. We were surprised, the doctor was surprised, even his staff were surprised! The next 5.5 months were fairly uneventful. When I was 19 weeks pregnant we had a 3D ultrasound done and found out we were having a boy. I was just relieved it was an actual baby - after so many years of not being pregnant, it was almost impossible to believe that I was.

Infertility is extremely hard to deal with - it is a life changing event and without a doubt it has changed Jim and I forever. Neither one of us will ever forget what it is like and how painful and isolating it can be. Like most difficult things, it can be hard to understand unless you've lived it. Having Bennett has eased the pain, but nothing will erase what we went through.

So why have I added this information to the blog? Well, mainly because I want people to understand how desperately we wanted Bennett and how for us he was a miracle before he was even born. It made what happened next even scarier and more heartbreaking. Because what happened at the 5.5 month of my pregnancy, no one could have expected or prepared for.

Tuesday, February 19, 2008

Today has been busy and I have no time to post what I wanted too. So instead I thought I would put up a couple of pictures. I should have more time tomorrow.

Monday, February 18, 2008

First Post

After reading blogs for months now, I've decided to start my own. I first thought of the idea a couple months after returning home from the hospital with my broken leg. Originally, it seemed like a good idea to document my recovery. A journal that I could look back on when times were better and remind myself how far I had come. As my leg got better and I became busier with life as a new mom (with some physical challenges) I kind of forgot about the idea.

However, within the last couple of weeks I found myself thinking about it again. My son Bennett was recently diagnosed with cerebral palsy. Suddenly rather than searching the Interent for information about broken legs and what to feed a one year old I found myself looking for cerebral palsy. There's a lot out there - most of it scary - wheelchairs, seizures, learning disabilties, pain, surgeries, etc. What I didn't find initially was hope when unfortunately, that's what I was looking for. Hope that somehow this terrifying diagnosis wasn't the end of the world - hope that my son - my perfect, gorgeous, happy little boy - could have a "normal" life - whatever normal means.

Eventually, I did find some hope on the computer. Not in the form of official cerebral palsy agencies, medical websites or scientific articles. I found hope in the blogs. Blogs of parents who deal with cerebral palsy and all the challenges it brings every day. Each blog is different because each child is so different. What they all have in common is that they love their children and cheer them on as they learn to live with challenges most of us can't even imagine.

So why did that inspire me to start a blog? Once again I wanted a journal that I can look back on and remind myself of where Bennett started and how much he accomplishes - I know there will be great things. I also wanted a place where family and friends can keep up to date on his progress with thereapy and cheer him on (ok - and maybe cheer me on too). Maybe along the way, we can give some hope and comfort to someone else.

Life goes on - one day at a time. And today is Monday.