Wednesday, April 29, 2009
Avery: Mommy, what are you drinking?
Me: I'm drinking milk.
Avery: Oh! Milk comes from cows?
Avery: That milk is from cows?
Avery: Hey! I didn't know we had cows!!
Friday, April 24, 2009
Avery and her Daddy and some ambulances! So exciting! She loved seeing the ambulances, and was excited to see the helicopters too, although she wasn't quite brave enough to actually touch them when we were allowed to go get close to them! She prefers admiring from a distance...!
Immediately after the helicopters we headed over to Salem for the annual kite festival. We've been once before when Avery was a baby, but this year of course was so much more fun because Avery was so excited! She did so much walking! It's amazing how well she does in the grass with her walker! She walked almost the entire time we were there, and she only stopped walking when we asked her to sit in the stroller so that we could finish walking around faster. She loved it though! We met up with our friends the Symes, and we just had a blast!
After the festival we went to Five Guys with the Symes and had a yummy lunch. Avery had obviously worked up an appetite - she ate almost all of her burger and a lot of fries!
Brogan just played with my keys and didn't eat anything. Brogan doesn't like food. It's funny because Avery was always such a skinny little baby, but she started eating solid food at about 4 months and loved it. By the time she was Brogan's age, she was even picking up her spoon and putting it in her mouth by herself. (She stopped doing that for a long time at about 12 months though...suddenly decided she wanted us to give her her food...!) She was holding her own bottle by about 5 or 6 months. Brogan, on the other hand, is my little solid brick of a baby, and yet he only ever eats anything because I insist on it, he won't pick up his spoon, and he's also decided he doesn't want to have anything to do with a bottle anymore, let alone hold one himself!
On Thursday morning the weather was so nice that we decided to hike up to the Star. Avery still talks about the last time we did it, and that was back in November! So she was very excited to go! She loves sitting in Daddy's backpack :) We're thinking that we'll have to get another one of those, because Brogan's too big for the front carrier now - my shoulder's were so sore by the time we got back to the van! He really liked it though.
Avery loves her Daddy so much. She's going through a phase right now where every time she hurts herself or gets upset, she says "I want Daddy!!" I feel bad for her when she asks for him when he's at work :(
Friday, April 17, 2009
So we are going to be starting Avery back on the valium. Poor girl is just having to fight her own body harder and harder as she grows. She keeps on having growth spurts too, and every time she does, her muscles of course get tighter. I blame her father for being so tall! :p Dr Brown was talking again about why he wanted to do oral medication rather than another round of botox, and here it is:
- Some of the muscles he would need to be getting in her hips are really virtually inaccesible
- Botox wouldn't be able to help with the inward turning of her feet
I almost didn't mention Avery's headaches, because it didn't occur to me that it would fall under his area of expertise, but luckily I did say something about it in passing, and he looked at me and said "She's been getting headaches??" and demanded to know more about them. As it turns out, it seems that he was exactly the man I needed to talk to about it! After watching how reliant Avery is on her arms when she's walking (when she's using her walker, her legs really only propel her, it's her arms that take most of her weight), he says that her headaches are probably related to her neck and how tight the muscles are there.
This makes SO MUCH SENSE!!!
I was wondering why Avery hadn't had so many dizzy/headache-y spells this week, and of course, it's because it was spring break and Brogan's been sick, so we've spent a lot of time at home which has meant that she hasn't done a lot of walking in her walker! And of course it's been getting worse as she's been getting stronger and more confident in her walker, because she's been straining those neck and shoulder muscles more and more! She's been doing a lot of jumping and swinging in her walker too. In fact, when we first got to the appointment this morning, one of the first things Laura (who does all Avery measurements) commented on was her strong shoulder muscles. This is why she keeps on getting headaches randomly while she's walking around - it's not random at all!
I just didn't think it could be shunt or seizure related - neither of those options made enough sense to me! If it was her shunt, it surely would have been getting worse, and it would have been worse if she was lying down I'm sure, but these headaches she always feels better when she lies down! I didn't think it could be seizures either because she's never "gone". Yes, she goes into little dazes occasionally, but she's always responsive when I talk to her, and these dizzy spells and headaches aren't ever preceded by anything wierd. I would have felt like a bad mother if it had been seizures because it never even crossed my mind as a possibility before Dr Qandah mentioned it.
I've been feeling relieved.
So we have another set of stretches to add to the inventory :)
Of course, I'm still going to be keeping track of the headaches and what she's doing when they happen, because we haven't actually ruled out anything. I don't think it's shunt problems or seizure related, but we'll still be seeing the neurosurgeon and neurologist to be certain. But we'll be doing these stretches, and if they seem to help then of course I'll feel even more sure that Dr Brown is right.
Now some photos and a video :)
Avery never seems to mind all the pushing and pulling and prodding that Laura does at these appointments! Here she is playing with some shapes and being silly while Laura gets her measurements.
Avery walked up and down the hallway a few times in her walker, and then with her crutches.
It takes an hour to get to Dr Brown's office, and the appointment was right when Brogan normally has his first nap, so they were both exhausted by the time we left, and this is what they looked like when we got home :)
Thursday, April 16, 2009
In this picture Avery is holding a sparkly ball up while they sing the ABC song. She says "oh! This is heavy work!" It's a pretty fun ball though - it's filled with liquid and sparkles that move when you shke it - I might have to get one for her :)
Playing catch. She was quite impressive actually! She threw it really well, and caught it almost every time even while the horse was walking! Nice!
Kneeling on all fours. Not sure exactly why this is good, but I'm sure it is :) It probably takes some effort to keep herself steady while the horse is walking, so that's a good thing :)Kneeling up. Again, great for trunk strength and balance.
I love this picture. For a couple of reasons. Firstly, you can see from the way Avery's looking at Lisa how much she trusts and loves her - she's been seeing her every week since she was just a little baby, and she's wonderful. Secondly, look at that posture!! She's sitting up so straight! Hippotherapy is great!
Brogan looked up whenever the horse was close, but the rest of the time was more interested in the toys and rocks.
Facing the tail! Great stretch.
Poor Brogan has a cold. He fell asleep on the way home. He is such a sweet boy. I know second babies are generally easier and everything, but he really is such a good boy. He gets dragged all over the place to all Avery's stuff, and he just takes it all in stride.
And he's just so cute :)
Find the whole article here.
"It really bugged me when I was little because I couldn't run as fast as the other kids or do some of the things that they did," Allen said. "One of the biggest effects of cerebral palsy is balance. When we were little, someone brought in a balance beam that was just an inch off the ground, and it was easy for the other kids, but I had to step on the ground a couple dozen times. I've had to wear glasses my entire life and I've always been picked on a little bit. But I've learned to cope."
Encouraged by her mother and older brother, Ray, Allen began running cross country and track as a seventh-grader at Memorial Middle School. She had to walk part of the course to complete her first cross country race, but she's been hooked on competitive running ever since.
"That sparked my interest to get strong enough to run a whole race, and I've never had to walk another race again," Allen said. "After I got good enough to run the whole race, my goal has always been to get out of last place, and that's something I've clung to my whole running career."
Tuesday, April 14, 2009
I called Avery's neurosurgery office yesterday to make an appointment for her because ever since she had that stomach virus last month she's been complaining of dizziness and headaches, which is weird. It doesn't happen every day, but some days it happens several times, and the colour will just drain from her face and she'll tell me that she feels dizzy and she needs to lie down, or she'll say she has a headache and she needs to have a nap. I asked her ophthalmologist about it last week in case it was related to her vision, but he didn't seem to think it was. So I finally got online yesterday to see whether it might be shunt related, and I just found one little paragraph here that said this:
Under-drainage, in which the fluid is not removed quickly enough and the symptoms of hydrocephalus return, is one of the commonest problems. It is usually due to blockage of the upper or lower tubes of the shunt by tissue, though it can be due to the shunt breaking or its parts becoming disconnected from each other. It is rarely due to the valve itself, which usually continues to function in the same way for years. Pressure may sometimes build up rapidly, resulting in loss of consciousness, and treatment is required as an emergency. However, in most cases the onset is more gradual, and can follow a minor illness such as a cold. Headaches increase in frequency and severity, often worse on waking in the morning. Vomiting and dizziness also occur, and sometimes other symptoms which vary from patient to patient. In these cases the parents or carers will be able to recognise the symptoms from previous episodes. Specialist hospital staff are now fully aware of the various presentations of ‘blocked shunt', but non-specialists and family doctors may not be.
Anyway, basically, here's what he said. He didn't really feel the need to do a scan of any kind at this point, since it's obviously not a major shunt failure, and he doesn't think it's likely to be a shunt-related problem at all. Good news. He does want us to pay close attention to it though, and wants me to keep track of when it happens and how often, etc. He wants to see us back in a few weeks, and he referred us to a pediatric neurologist because he thinks it sounds like there may be some seizure activity. Not so great news. But at this point I think I would be rather surprised if that were the case. We have taken Avery to a neurologist to test for seizures once before, when Avery was almost a year old, because she'd been having night terrors for several months, but they thought she was too young to be having night terrors so thought it was more likely to be seizures. She had a sleep deprived EEG (it was a joyful experience.....) and it showed no seizure activity, and that was actually the end of the night terrors, oddly and blessedly enough! But don't you think it would be strange for her to start having seizures of any kind now? I mean, she's never had them before, and I haven't seen any thing thats made me think she's seizing - she does sometimes go into little dazes or whatever, but she'll always snap right back out of them if I talk to her. And I haven't noticed anything wierd preceding her little dizzy spells. Of course, I'll be paying much closer attention now. It happened once today after her appointment. We were driving to physical therapy and she said "I feel sick" I asked her where she felt sick, was it her stomach? and she said "No, I have a headache, I need to go to sleep." I asked her where her head hurt, and she pointed to the back right side of her head, near her shunt. I asked her if her shunt hurt, and she said no, it was her head. But then we got to therapy, and she was still a little pale as we were walking in, but by the time we got up there she seemed to be feeling better again. So I don't know what's going on, or whether I should be worried about it, but hopefully we'll be able to figure it out soon! I know that quite a few of you I know from my other blog have children who deal with seizures...do any of you think that this sounds anything like seizures? I just finished reading a little bit about complex partial seizures, which sounds a little tiny bit more plausible than the kinds of seizures I was previously aware of, but I still think that I would have to realise if my child was having seizures....wouldn't I???
Monday, April 13, 2009
Thursday, April 09, 2009
In case you don't catch the whole thing, here's the story Avery is telling:
Once upon a time there were elephants to go to school. And once upon a time there were elephants going to school and they were playing with toys at school. The end.
Friday, April 03, 2009
So we were working on independent standing and stepping. Lisa was helping her learn how to get up to standing by herself, and then once she was up and balancing she was having her take 2 steps towards me to put some pieces in a puzzle. Avery was doing what she normally does - she balances, then she takes a couple of steps while falling towards me, if you can picture that. So she did that, and then I helped her stand up again and Lisa gave her the puzzle piece and I held up the puzzle. Avery must have though the puzzle was too far away, so without even any prompting, she took two little steps closer to me and then stopped, still standing!!
Without any help!!
My baby took her first completely independent steps!!!!!!
Lisa and I both about cried!
So Avery started hippotherapy again yesterday. It was supposed to start last week but it got canceled because of the cold wind and rain. Yesterday it was just raining, and they have a covered area, so we were still able to go! Avery was so excited! Anyway, Lisa is "testing" all her kids throughout the course of the 10 weeks of hippotherapy so that she can show that it really does help, and what she decided to do with Avery was to test her before and after each session to see how long she could stand up unassisted. So that's what we did when we first got there yesterday. Avery stood up on the mat, and Lisa sat behind her and handed her the pieces for this puzzle which I was holding in front of her.
Of course, we were expecting her to stand up for maybe a minute before she lost her balance. Her record up til then was almost 2 minutes, and that had only happened maybe 2 or 3 times. So Lisa started the stop watch and started handing Avery the puzzle pieces, and I held the puzzle and made sure she wasn't holding onto the puzzle for support. A minute came and went, and she was still standing very steadily. She finished the puzzle. She took out all the pieces one at a time and gave them back to Lisa. She finished the puzzle again. She started taking the pieces out again, and finally lost her balance and fell backwards onto Lisa's lap after
So of course we thought that would completely throw off Lisa's testing, because she'd never even come close to standing alone for that long before, so she wouldn't be able to stand for nearly that long after hippotherapy! But we were wrong! After 30 minutes of riding the horse, we went back to the mat and the puzzle, and this time, Avery stood for...
In case you weren't certain before, my daughter is absolutely amazing.