Tuesday, September 30, 2008

Physiatrist appointment

I've been slacking...again. But we've been really busy, and then both my babies got colds. Excuses excuses :) SO there is stuff to catch up on.
Avery had an appointment with Dr Brown, her physiatrist, who happens to be my favourite of all her doctors. He's just so nice, and he's communicative, which is so important. Plus, he was the first one to tell us with confidence that Avery will eventually walk independently, which may have softened my heart toward him a little!! :D Anyway, we were supposed to see him in August, but I happened to go into labour on the morning of the appointment, so we had to cancel ;)
They do all sorts of measurements of Avery's range of motion and reflexes and all of that good stuff whenever we go, and it's been interesting the last couple of times that while Avery has improved in her walking and mobility immensely, her muscle tone and range of motion has barely improved, and in some areas has actually decreased. Dr Brown says that what it means is that she is fighting her muscle tone with every step she takes, and that it's pure determination on her part that she's doing so well. That's why he prescribed the valium in the first place - to make it easier for her to move without having to fight her own body so much. They were very happy with her progress though, and as always she was an absolute joy and seemed to make everyone's day! Our appointment wasn't until 1pm, but it turned ou that we were his last appointment of the day, and we were there for 2 hours, and Avery had a great time showing off her mad skills to them :)
Here is the rehab plan Dr Brown gave us this time:

Maybe we can talk daddy into buying a pony (haha), but if he doesn't go for that a peanut will work (The really big ones that you can sit on). Hippotherapy would really help her, the more the better. AFOs are small but some trouble donning the left. They need to be adjusted or replaced.
I think it is worthwhile to try and gently slowly carefully increase the Valium as we discussed: the ladder is first to go to 0.3mg in the am and 0.6mg in the pm, wait 3-7 days, then go to 0.6mg twice a day. If she has any problems, you can always go back down and you can definitely stop at a certain point (if she is tolerating it) and just stay there (like you could climb or use a ladder). From the above point you can go to 0.6mg in the am and 1mg at night, but I wouldn't go past 1mg TWICE DAILY for now.
Laura [the PT who does all the measurements etc, who also happens to be a friend of Gabe's from his days at the Rescue Squad] will discuss the adjustment of how we wear the theratogs that really seemed to help today.
Disposition: Return to office in 3 months.

So I am now even more sure that hippotherapy is more than worth our time and effort! I mean, Dr Brown couldn't stress enough how much good it would do Avery. He said that in an ideal world he'd want to see her on a horse every day.
Avery has been complaining a little bit about her braces recently - we have an appointment at the orthotics place next week and a prescription from Dr Brown to have them adjusted or replaced.
Gabe and I are in different places over the valium issue. I increased the dosage as Dr Brown suggested to 0.6mg in the evening and 0.3mg in the morning, and Avery was irritable for more than a week after that. In my mind, I was still willing to give it another chance though because that week had also been a stressful one for us with some uncertainty with our house, and having family come visit over the weekend, so I decided to give the higher dosage another "normal" week before going back down. Anyway, Gabe was putting her to bed one night last week, and he called down and asked if we were still giving her 0.6mg, to which I replied, "Yes, I'm giving it til the end of the week", meaning I was giving the higher dosage til the end of the week and if she was still irritable I would go back down to the lower dosage. He said though that he's ready to stop giving her any valium at all though because he says he doesn't see that it's doing her any good. Hmmm.
Here's the thing. Avery is making progress. It's hard to know what exactly is responsible for the progress she's been making, because in the last few months she has started hippotherapy, started taking valium, started preschool, and continued with her weekly physical therapy. And in addition to that, she's also just getting older and more independent, so it's just impossible to credit her progress to any solitary one of those things. It also means that, while she has made progress since starting the valium, we don't really know for sure that she's made any more progress than she would have if she hadn't been taking it. Do we? Anyway, the way I feel about it is this: we decided it was worth trying, and since what's she's taking right now is an infant's dose, we should definitely continue to give it a chance to work on a slightly higher but still very conservative dose. Gabe seems to think more along the lines that since this tiny dosage doesn't really seem to be doing much, we should just stop giving it to her.
*sigh* It seems that more often than not, the right choice isn't clear.

Thursday, September 18, 2008

family photos






Tuesday, September 16, 2008

Hippotherapy

Avery started hippotherapy again last week. Yesterday was her second session this fall. She loves it so much! Gabe and I were debating whether we should do it again or not, because it means that I have to get her out of preschool early every week, and it's almost an hour away, but I really think that she benefits from it. I'm more convinced of this than Gabe I suppose. I think he's not entirely convinced that it will help her physically, and is concerned that the only good thing about it might be that she loves it so much. I'm more convinced that it's an excellent physical therapy for her though, for a few reasons. They say that the movement of the horse underneath her simulates movement in her hips which is almost exactly the movement she would be doing if she were walking all by herself. Also, if nothing else it's an excellent half hour long stretch for her legs, which, when you consider how it's impossible to stretch her without making her scream, almost makes it totally worth it just for the stretch! When she was first diagnosed with CP, they did an x-ray of her hips because they were saying that the abnormal muscle tone and the way it can pull on joints, etc, it can actually make the hip joints form abnormally, so I think it's so important to do as much as possible to keep her hips positioned correctly, and that's another thing that I think hippotherapy helps a lot with. There's all sorts of evidence and research that supports hippotherapy though, and that's good enough for me. Also, there have been several people I've spoken to who have personally attested to the fact that hippotherapy has done wonders for their own children. Even if I didn't think it was helping Avery, I would rather do it and find out later that it didn't really do much, than NOT do it and find out later that it would have helped her.
I have some pictures and video of her riding somewhere, but I can't find them right now. I'll try to find them and post them later.
American Hippotherapy Association
Many Blessings Farm

I think it's a dog....

Last night I was looking at one of Avery's books with her and she pointed at a picture of a dog and said "What's that", so I said, "Is it a puppy?" and she said, "No, I think it's a dog". So, I pointed to a picture of an apple and said "Is that a flower?" and she said "No, I think it's a apple". She's so cute, and she just keeps on getting more clever all the time! I love being able to have pretty decent conversations with her. She just gets to be even more fun as time goes on!




This is what I came downstairs to find last Thursday. Avery got a cold (I suppose we'll be getting more of those now that she's at preschool...), so she (we) had a pretty miserable night, so when she woke up again at 6-ish, Gabe took her downstairs with her pillow and blanket and let her watch sesame street, and then he fell asleep on the other couch. Quite pathetic, but quite cute at the same time. Poor baby. She was a mess all day - watery eyes, big dark circles under them, runny nose, faraway look - she spent almost all day just like this - lying on the couch watching various movies. Brogan got sniffly too, but luckily enough he didn't seem to get it nearly as badly as she did, which was wonderful. I got the cold on Friday night, and it was pretty miserable all day on Saturday, but felt much better by Sunday. So at least it didn't last long!


Brogan has the cutest smile, but of course trying to catch it on camera is impossible!! This was Gabe trying to make him smile, but he was stubbornly refusing because I had the camera out! Also, if you look at his little onesie, you can see that it has a little "CP" for "Classic Pooh" on it, but when Gabe noticed it he said, "CP? So what, is he going to wear cerebral palsy on his clothes now??" Haha - he's just being supportive of his big sister I suppose......!

Monday, September 15, 2008

Why would you??

I would have thought that it was obvious that I should not be your choice of confidant if you wanted someone to complain to about the fact that your 10 month old baby has just started walking and you think it's just too soon! Why would you do that?? I was talking to a friend of mine the other day and she was complaining to me because her son has just started pulling up on things and walking around holding on with one hand, and this upsets her because he was only army crawling before that and she wanted to see him crawling around on all fours for a couple of months first. Seriously, what did she expect me to say to that? "Oh yes, I'm so lucky because my 31 month old isn't walking yet so I still get to enjoy watching her crawl around on all fours"?? Sometimes it's like people jsut don't think at all before they open their mouths. So I just told her that there are many far worse tragedies than having a walking 10 month old. Nincompoop.

Monday, September 08, 2008

Preschool and valium

Avery started preschool last week!! I can't believe it! But so far it's going great, and she loves it! Once she's settled in properly (in about a month) they'll do the PT evaluation to see what she needs specifically as far as physical therapy goes, but until then there are also a whole bunch of other goals on her individualised education plan (IEP). What a great program. There are 8 kids in her class, 6 boys and 2 girls. The other girl's name is Ava, so they have an Avery and an Ava! The teacher is really great, and then there are also two paraprofessionals in the classroom with them. Today they did some fingerpainting. Avery has an issue with getting her hands dirty, so I was pleased to hear that she didn't get too bothered by the paint on her hands, and that once they started she actually got into it a little bit, so that's great.
At the end of her first day
Waiting for the bus
Still waiting

An update on the valium front: We started giving her 0.3mg of valium once a day before bed. The first week she seemed to be more irritable and sleepy and stuff, but then that sort of went away, but there was no noticeable difference in her muscle tone. So we upped the dosage to 0.3mg twice a day (before nap and before bed), and now it does seem to be making a difference. It's a lot easier to put her braces on even, because her ankles are a lot more flexible. Since she started taking it she's also made some exciting progress with the standing and walking. She will now attempt to take a step or two before she falls over when she balances independently, and on top of that she can also stand independently for longer than before - sometimes for almost 10 seconds! So that's exciting, and I don't know how much of that has to do with the valium, if anything, but as I said, the valium is definitely making her muscles more relaxed, which is great. We see Dr Brown again next week so we;ll talk to him about the dosage and how long she might be taking it, etc, because we still only want to give it to her for as short a time as possible.

Avery at the end of her first day at preschool!! I can't believe she's big enough :(
Waiting for the school bus.
I thought was the cutest little outfit - Gabe said it wasn't very manly or intimidating :D
Sitting on the stairs is apparently one of her favourite things to do right now, and she's wearing her new Curious George t-shirt - she LOVES Curious George!



Avery and Daddy going to a ball game :)

Walking in the park

Well, everything is wonderful! I never will understand those women who say "Just you wait - give it a few weeks and you'll be wishing you could put the baby back in!" Even if my baby cried all day, I don't think I would ever choose to be pregnant rather than being able to hold my baby in my arms! Of course, it helps that Brogan is an absolute delight so far! Saturday night was a "bad" night because he woke up every 2 hours instead of every 3 or 4 hours, but even that bad night was better than every night of my third trimester!

Brogan is wonderfully healthy and lovely! I am amazed at how much easier this whole baby thing is the second time around! I remember how overwhelmed I was the first time, but this time it is so much easier! Oh, the joy of learning from past experiences!

Avery still adores Brogan. She is very gentle with him and asks to hold him - although she's always satisfied to hold him for about 2 seconds, and then she's ready to give him back! But when I'm holding him, or he's on the floor or something, she'll come over and gives him kisses and hugs, and the really funny thing is when he moves when she touches him, because then she goes "Don't touch me Brogan!!" It's hilarious! Also, she's created a new verb - when he cries she tells me that he's "sadding". I like sadding - I think we'll keep it :D Oh, and the other verb she likes is "soft", as in "I soft him Mummy" as she strokes his hair. Very cute.