Two Things

Have you ever spent time looking at and examining a part of your body and wondering what it would be like if it were gone? I'm not talking about a bit of extra weight or a mole or something but rather an actual part of your body. Well, that's what I've been doing a lot lately - too much. You see, I've been worried about the possibility of losing my foot. I had a CT scan done not too long ago so the doctor could get a better look at the quality of the bone in my injured foot - he had some concerns. Consequently so did I and as usual imagined the worst scenario. After the accident there was a very strong possiblity that they were going to amputate my leg. Fortunately, I fell on the good side of the statistics and they were able to put it all back together. However, my doctor had anticipated that we may run into trouble at some point.

Yesterday I had a followup visit with my orthopedic surgeon and the good news is that my foot isn't going anywhere! The doctor was worried that I was developing avascular necrosis - a condition where the blood supply to the bone is affected and as a result begins to die. It turns out that I don't have this condition and the odds are getting higher that I won't. Avascular necrosis does not mean amputation in most cases, however I was frightened because I know that with the seriousness of my injury that it may have become a very real possibility. So this good news doesn't get rid of my other issues but it's very good news indeed. The doctor even said he would leave me alone for a while. And as much as I like the guy it will be nice to create a bit more distance in our relationship.

The title of the post is two things. Well, the good news about my leg is the first thing because it happened yesterday. The second thing happened today. I heard from Bennett's doctor regarding the results of last week's EEG. It turns out that the results are normal! Now, I realize that this doesn't mean that he isn't having or hasn't had seizures but it's still good news and we're happy.

So, there you go - two things - two good things. I know there are no guarantees in either situation but as I said it's good news and right now I'll take it and hang on to it with all my might!

As for the picture - I have a hard time posting without a picture but didn't want to insert one of my foot. As much as I love it, Bennett is much cuter. I thought the picture was appropriate since it shows Bennett and one of my crutches. He has so much fun playing with them. Maybe we should buy him more toys!

PS: Hopefully in less than 48 hours I'll be lying on that beach I told you about a couple weeks ago. Keep your fingers crossed for me please!

Sunday Morning

As I've said before, we don't get out much. But lately I've been inspired by Kiera who is always doing fun family stuff with the handsome Reichen. We started the day by going out for breakfast with Grandpa. Afterwards we went to our local Science Centre for a couple hours. Bennett seemed to enjoy himself and walked everywhere. There was a lot to see but Bennett seemed to enjoy walking and riding in the glass elevator the most.

It was a fun way to spend the morning. While we there we purchased a membership so hopefully, we'll have many more visits.

Seizures

Without a doubt seizures are probably one of my greatest fears. They are scary things - very scary. Our doctor doesn't think that Bennett has an increased risk of having seizures. However, it is still something that I've worried about and I find that I'm always watching Bennett closely to see if I can detect any sign of seizure activity.

Within the last few months I have noticed that every once in a while Bennett will stare off for a while. It never lasts longer than a few seconds. Sometimes I call his name and he'll turn right away, sometimes it takes a couple seconds. These stares are not accompanied by anything else (ex. tics, lip smacking, twitches). It's just him gazing.

I want to be sure they aren't absence seizures so I mentioned the situation to our doctor who proceeded to order an EEG. That's what we did today. Kara had prepared me for what would happen. It took about an hour. It took about 1/2 hour to measure and mark his head and attach the electrodes. He is supposed to stay as still as possible and in order to prevent him from ripping the pads from his head he was wrapped up tight in that blue contraption you see above. As you can imagine, he just LOVED that! He wasn't happy at all during this procedure and was quite vocal about it. However, by the time the technician removed the electrodes he was back to his happy self. He did show his displeasure with Jim and I though when we left the hospital. He quickly grabbed Grandpa's hand and pretty much ignored us for a while. I can't say I blame him.

Now we wait anxiously for the results. The technician told us it would take about a week. I'll let you know what happens.

Developing Story....

Tonight Bennett did an incredible thing. He stood up all by himself in the middle of the floor!!! We just started practicing this last week and he showed little interest in it. And then tonight while Jim and I were having a rather heated discussion about standing up to pee (it's a long story) we turned around to find Bennett standing up in the middle of the kitchen! He then proceeded to repeat this procedure 6 times in a row just to show us that it wasn't a fluke.

Exciting stuff big guy!!!

Worst Weeks

It would be safe to say that in the last couple years I have had a couple weeks that would qualify as the worst week of my life. I hope no one ever asks me to choose because I can’t figure out which one I would pick. The first “worst week” would be the week I had the car accident. The second occurred a year ago. It was the week Bennett was diagnosed with cerebral palsy.

Jim and I traveled to Cuba in early January for a break and a fresh start after every thing that had happened – car accident, baby, multiple surgeries, endless physio, etc. We returned home and within days I came down with a horrible stomach flu (those paying attention will notice that it happened again this year). During this time we also ripped out our kitchen in preparation for new cupboards. My flu was better by Monday but then Jim got sick. Bennett’s appointment with the pediatrician was on Tuesday. I was worried because Bennett was not crawling or talking. We had noticed that he was predominantly left handed but this didn’t cause us any concern.

The doctor was not very personable and began the appointment by telling us to take Bennett’s socks off to help him walk and to get rid of his soother. In the last 10 minutes of the appointment after she finally examined him she turned and told us very bluntly, “he has cerebral palsy – he should walk and he should talk but not until he’s at least 2 or 3”. I asked if she could be wrong and she said no. I asked if it could range from mild to severe and she said yes. Jim didn’t say a word. And soon I didn’t know what to say either. It was like the room had gotten dark and all the air had been sucked out. She said she didn’t have any other information for us but would refer us for therapy. We got up and walked out and when I passed her she told me I should walk with a cane. I said “thanks”. In silence we went into the porch to put our shoes on. The doctor followed and stuck her head through the door and while laughing asked us if he had any feeding problems. We said no and walked out the door. We cried all the way home. It felt like the world had ended.

By Wednesday, our kitchen was still a disaster, Bennett had cerebral palsy and Jim kept getting sicker. Family came over, we all cried, we all questioned her diagnosis. By Thursday Jim was worse – a lot worse. I don’t know if I’ve ever mentioned it before, but Jim is a diabetic. If we hadn’t been so devastated by Bennett’s diagnosis we probably would’ve paid closer attention to his health that week. By noon it became apparent that Jim had to go to the hospital. My parents took Bennett and I went with Jim who was quickly admitted. In the emergency room we learned that he was suffering from ketoacidosis, a deadly condition for diabetics. I can still remember walking down the hallway hearing him gasp for each breath – I learned from the doctor that this is called Kussmaul breathing a side effect of ketoacidosis. Another effect of ketoacidosis is a low blood ph – normal is between 7.35-7.45. In acidosis the ph dips below 7.35. Very severe acidosis may be as low as 6.9 -7.1. Apparently a level of 6.8 is incompatible with life. Jim’s level was 6.9.

I remember sitting at the foot of his bed with tears streaming down my face wondering whether Jim might die and trying to figure out how I could go on. I was a woman who could barely walk and had a son who was just diagnosed with cerebral palsy. I know from experience that things can always get worse but at that moment it seemed about as bad as it could get. Jim was in the hospital for 4 days. I rarely left his side – how could I after everything he had done for me after my accident? Bennett was ok – he didn’t know he had cerebral palsy – he was still his happy self. Jim needed me and I needed to be with him. I remember hearing people say that when you’re going through a difficult time to focus on just getting through the next minute. So that’s what I did. I have never looked at my watch so many times in my life.

Since you’re all reading this a year later, you know this story has a happy ending. Jim recovered and promised to take better care of himself. My kitchen got cleaned up and I have new cupboards. We also got a new doctor for Bennett. In many ways the darkness of Bennett’s diagnosis has lifted and the light of his smile and his spirit has once again brightened our world. I plan for this to be the only acknowledgment of this particular anniversary. I will always recognize the anniversary of the car accident – it was too big to forget or ignore. But the anniversary of Bennett’s diagnosis is a day that I hope I will forget as time goes by. Even though it was only a year ago, cerebral palsy has become part of our lives and part of our family. Not a welcome member but it is what it is and on we must go…together.

I Should Be...

on a beach like this...right now...with a drink in one hand and a book in another. However, I'm not. Instead I'm at home in the freezing cold. This morning it was -35 Celsius. That's cold - really cold - the kind of cold that takes your breath away as soon as you step outside. Now, you might think I was just dreaming when I said I should be on a beach - but I'm not - that is really where I SHOULD be. Jim and I had booked a trip quite a while ago to the Dominican Republic. We were to leave January 9th. We were even packed and ready to go on Thursday night. But then at approximately 8pm I started to feel sick and then I was sick - very sick. I'll spare you the gory details but it wasn't pretty and it became evident at around 3am that we weren't going anywhere.

So here I am. I'm finally feeling better and it has only been in the last day or so that I've been able to look at my computer screen for more than a couple minutes without being sick. I haven't been able to update my blog or comment on any others. I should be able to catch up this week as I doubt I'll be spending any time outside frolicking.

I promise a better update soon. In the meantime, I think I'll sit back and dream about that beach....oh and for those of you who enjoy videos take a look at the one below. My boys emptying the dishwasher - if I hadn't caught that on video I would have thought that I was dreaming. I wasn't too impressed with Bennett kneeling IN the dishwasher but I hate to interrupt men at work.

Happy, Happy

I belong to an email list for parents of kids with hemiplegia (cerebral palsy). It has been a great source of information, hope and unfortunately at times despair. A couple of months ago they had a thread that garnered a lot of responses. The topic revolved around how many children with hemiplegia are good natured and happy. I’m not sure why but this topic and all the responses bothered me. Obviously it bothered me a lot since here I am two months later writing about it.

Basically what the parents were discussing was how they thought that their kids were happy and easy-going because of the nature of their brain injury. Many parents commented that their children were happy even when engaged in an activity which would make “other” kids unhappy. For example, one parent commented that they were worried about their child because they were so willing to do their homework again and again even though it was a subject that they had difficulties with.

So, what bothered me? I guess it was just the fact that so many of the parents seemed to be over analyzing their kids and seemed to be concerned about the fact that their children were happy because of their brain injury. I know that the effects of a brain injury can be wide ranging and as parents we should be aware of issues that our children might face. This one, however, did not occur to me. You see, Bennett is happy, he is good-natured and he’s easy going. Yes, he has his moments but overall he seems to be a very happy and easy child. He has been this way since he was a baby and many people have commented on it. Now I would like to think that this is due to the fact that it is his nature and that he is surrounded by people who are generally the same – and oh yeah – my spectacular parenting abilities! But maybe, it is due to the fact that his brain was injured in the “happy spot”.

In either case, this is not something I want to worry about or even think about. I want to enjoy it! I don’t care that Bennett wakes me up every morning with a smile, a giggle and a kiss because of a brain injury. The fact is that he does and I love it. I don’t care that he may work hard at school and fail yet smile at the same time.

I hope I haven’t come across as being too critical of those parents because that’s not what I want. The parents that post on that message board are incredible and amazing advocates and supporters of their children. I guess the whole thread just bothered me because I would like to attribute Bennett’s good nature to him and not to his brain injury. In the end though his brain injury is part of who he is and part of who he’ll become and I guess I just want to be happy because he’s happy regardless of the reason.