Tuesday, July 29, 2008

Walkers - Full Circle


Bennett is still a long way from walking independently. However, he has made some really good progress in the last couple of weeks. He has been pulling to stand, crawling and climbing over obstacles and has even done a little (very little) cruising. You can definitely see he's getting the idea and is more motivated.

We got the walker from our physiotherapist a couple months ago. The idea at this point is to just get him used to it. He's liking it more and more and was bugging me this afternoon to go in it. I'm glad that he likes it. I have mixed feelings about it but mostly I don't mind. I see it as a tool that will help him learn to walk - not a reminder of his disability, and hopefully, one day we'll be able to send it back.

Above is a picture of me - about 7 months pregnant - sorry for the nightgown - that's all I wore because it's all I had. I couldn't get out of my house to go maternity clothes shopping. I did not have a good relationship with my own walker after the accident. The thing drove me crazy because of wheels that kept breaking and because it wouldn't fit through doors. I even threw it across the kitchen a few times. I was so happy to get rid of it - I never wanted to see another walker again. And yet, here we go - another damn walker in the house.

By the way, that is not me in the video below. It's Sarah - a wonderful young woman that we've hired to help with Bennett's physiotherapy. I think he's totally in love with her and will pretty much do anything she asks.


video

Friday, July 25, 2008

Liquid Gold!


Today is the day we have to bring Bennett back for the rest of his bloodwork and the urine sample. As you can see, we did have success - limited success but success nonetheless! I just hope that when we hand over this tiny sample of liquid gold that we aren't told that it isn't enough, because frankly, that's all they're gonna get.

Wednesday, July 23, 2008

Morning Man


Bennett woke up at 4:30 am today. Jim went and picked him up and brought him into bed with us. This is what we usually do when he wakes up in the middle of the night - I know we're probably creating a bad habit but I'm sure he won't be doing it when he's 18. He thought it was party time - rolling around, sitting up - generally causing a ruckus. At one point though he crawled up on my back, leaned into my face and said "Mama". It was clear as a bell and he only said it once. We are not sure if he really meant it or if it was just a fluke. Regardless, at 5 am, despite the fact that I was getting kicked in the back and having my hair pulled, I believed it. And my heart - just for a moment melted - completely. Kind of like the Freezie in Bennett's hand.

Tuesday, July 22, 2008

Sunday, July 20, 2008

Friends

Bennett made a new friend yesterday - her name is Kasia and she has the cutest pigtails you've ever seen. They had a lot of fun together sharing toys and sippy cups. Unfortunately, Bennett even showed Kasia how much fun she can have in the bathroom playing with the toilet. Check out some great pictures on Kara's blog.

http://bumbleblog-kasia.blogspot.com/2008/07/tale-of-two-sippy-cups.html

Saturday, July 19, 2008

Tea Party




Last weekend Bennett attended his first and probably last tea party - at least with his 3 year old cousin Mackenzie. Apparently they had fun playing with with toys and sharing kisses for a while but things started going downhill when the tea party started. In typical boy (or 18 month old) fashion, Bennett was grabbing the cups and plates and throwing them on the floor. Mackenzie was very much annoyed and I can't say I blame her at all. That is NOT appropriate behaviour for a tea party - unless you're in Boston in the 1700s.

U-Bag?


We brought Bennett for bloodwork yesterday. Not for any recent illness but because our pediatrician wants to rule out everything. We've put it off for a couple months but finally went yesterday. Bennett was not impressed - one lab tech laid on top of him, Jim held his legs down and the other tech held his arm and took the blood - what did mommy do you ask? Well, the only sensible thing I could think of - I left the room and cried in the hallway. They took 4 vials of blood and it took forever because they lost the vein partway through. We were happy to have it done and over with until we got home and listened to the message on the answering machine - it was the lab - they wanted us to bring him back because - oops- they had made a mistake and didn't get enough blood! I refused to bring him back and insisted that we could finish next week, which they agreed to.


We also have to get a urine sample from him. I remember when the doctor told us this. Jim and I being totally in sync as usual, both wondered "how the heck do we do that?". I give Jim credit though because he had the courage to both ask and answer the question in the same sentence - "How do we do that - wring out the diaper?". Ahh....I still giggle when I think of it. It does make sense - at least to me. However, apparently that is not how you get a urine sample from a baby. Apparently you use a bag.


So yesterday, I asked the lab tech about the urine sample and she gave me a bottle and asked the following question: "Does he pee?" It may seem like a simple question but I must admit I wasn't even sure how to answer that one without inserting sarcasm somewhere in my answer. Instead I politely replied, "Yes, as a matter of fact, he does pee - however, he doesn't do it on command and I really doubt he'll do it in that little bottle". I then asked about a bag and she agreed to get me one. It is a strange looking contraption for sure so I thought I would ask how to use it. She proceeded to whisper - "You put it around his ...uh.....you know...scrotum...and uh.........". She seemed so uncomfortable at this point that I decided to just end the conversation and figure it out myself.
Now I'm asking all of you - can anyone help me? Any suggestions?

Wednesday, July 16, 2008

Gimme A Break

First of all, I apologize for being such a negligent blogger. That sinus infection was something else - I was caught between being worried that the front of my face was going to blow off to wishing it would blow off.

Warning: The post below is an angry rant that involves the Canadian healthcare system. I must preface this by saying that I do like our system, however, as someone who has been in the position of having to use it A LOT in the last 1.5 years, there are some major problems. In many ways our system is broken.

So, I'm wondering when Bennett is going to get a break. First of all, the kid had the misfotune of being in my belly during a horrific car accident. Next, we had a wonderful (insert HEAVY sarcasm) obstretrician who not only refused to see me in the hospital (despite desperate pleas from nurses) after the accident, but continued to refuse to see me until I could get to his office in a wheelchair. As a result, I had NO prenatal care for about 10 weeks. Then, despite having a mother who had been through enormous trauma while pregnant, being born a month early and spending the first couple days in intensive care, he fell through the cracks and was never referred for follow-up by our Infant Development program. Normally, any one of those factors alone would have been enough for referral. As a result, he had a late diagnosis (13 months) and did not start therapy until he was 15 months.

Now, because of my physical limitations (as a direct result of the previously mentioned horrific car accident) I have difficulty doing much of his physiotherapy. We applied to a program called Special Services at Home that would provide some funds (not much) to allow us to hire someone to help with this a few hours a week. Well, he was approved but guess what - for the first time ever apparently, there is a waiting list and we should not expect any money for months - perhaps longer - perhaps never.

The doctor at the Shriner's Clinic from a month ago, recommended Bennett for an AFO (ankle/foot orthotic). This should help his stability and help him learn to walk. Unfortunately, the guy who normallly does the casting wasn't there that day but we were reassured that we would be contacted within 2 weeks for an appointment. After that, the AFO would take 4-6 weeks. Well, we weren't contacted with 2 weeks or even 3 weeks. Finally, after numerous calls and messages on my part, we finally have an appointment for AUGUST 29th!! After that, it will take another couple of months to actually get the AFOs. So, if we're lucky (and you can see how that's going) he might have his brace sometime in late October of November. I was and am so angry at this delay. It's ridiculous that we have to wait so long for a device that can help a little boy, who has already struggled so much, to learn to walk! We are going to research and see if we have any other options, even if it involves travel and more expenses. Fortunately, we are in a position where we can do this.

If you've made it through this angry rant, I've rewarded you below with a cute video of Bennett dipping his french fries. Yes, it is MacDonalds - I confess. I just showed him how to dip before he started eating and he took to it like a pro. I don't know why but it just cracks me up to watch him dip! You may note the Santa bib - I promise, it's not an old video. I just don't see why I should only use a perfectly good bib once a year.


video

Saturday, July 5, 2008

Sick and an Update

Bennett was wonderful enough to share his germs with me. Which would have been ok if it was just a cold. Unfortunately, my illness has morphed into a sinus infection and it feels like the front of my face is going to blow up. Frankly, it has been difficult to think straight - the result is neglecting the blog.

Anyway, I do have a small update on the Bennett front. We went for his hearing test on Wednesday. I didn't have any concerns but the speech therapist thought it was a good idea to rule out any problems. And besides, what the hell do I know - as I've said before, I had no idea he had cp either. Well, the good news is that he passed with flying colours. Our appointment was at 3 pm and we were getting back into our vehicle at 3:14.

We've ended occupational therapy for July and will not start speech again until the fall. I'm ok with the OT break but not real happy about the speech. Without a doubt, this is my biggest concern right now. I'll have a whole post dedicated to this soon. We'll continue with physio every second week. We're working on having him start to side sit and take weight on his right arm, crawling over obstacles and taking steps in his walker. I'll try to get some video to post soon. We definitely saw improvement in the walker at his appt. yesterday, but he's a long way from walking. His PT and I are anxious to get his AFO because it should make a big difference, but he hasn't even been casted yet. This is one of the frustrations of our health care system.

That's about it for now. I'll try to post something more thoughtful or amusing soon.

Tuesday, July 1, 2008

Busy Week

















I apologize for being such a negligent blogger. It has been a busy week. It started with Bennett's physio, then him getting sick, followed by a very quick trip to the hospital (we left because it was too busy), a visit to his family doctor (who prescribed antibiotics for bronchitis) and a 5 day long camping trip - oh yeah - and a quick stop at a family reunion.

So we're home now and Bennett is feeling much better. For a while he sounded like an old man with his horrible cough and rough voice. I, however, am now sick. Regardless, we had a great camping trip - our first of the year. We travelled to Chutes Provincial Park - it's a nice little park and also happens to be the place where I used to work and hope to return to at some point.
Bennett enjoyed himself quite a bit - he slept well except for last night. Jim and I pushed him around the park in his stroller at 11pm and again at 1 am in a desperate attempt to calm him down. It was cool and we were tired but the stars were beautiful.

I've added a few pictures and a video of the falls - aren't they amazing? The water is really high this year and it makes for great viewing.


video
Oh yeah - HAPPY CANADA DAY! I'm not one to wear my patriotism on my sleeve but I feel very proud and privileged to live in such a beautiful country. I hope everyone one enjoys the day.