Sickness and Incident

Well, we have had an interesting couple of days...

Brogan has had a cold of sorts for a couple of days, and he looks pathetic but doesn't actually complain a lot. He just needs lots of cuddles, and some motrin before bed to bring his fever down a little so he can sleep.
I picked Avery up from school yesterday (which I do every day now since otherwise she would be sitting on the bus for an hour and a half!!!!) and her teacher informed me that Avery had been kicked in the face by one of the boys in her class during recess. I asked if he had done it on purpose and she said yes. She said the they had taken her to the nurse and they had put ice on her face and that by the time they went back to the classroom she was feeling pretty happy again. She was wearing a different t-shirt because the one she had been wearing had blood on it from her nose, and she had a swollen red cheekbone, dried blood in both nostrils, and scuffs on the other cheek and her neck.
Once Avery and I were in the van and on the way home she told me who had kicked her, and that he had kicked her lots of times. She says that he only kicked her in the face, and not anywhere else on her head, and I can't see any bruises around her shunt or anything, so hopefully that's fine. But of course, Gabe and I had all afternoon and night to think about it, and there are several things that I need to talk to Avery's teacher about. Such as, how was the boy able to kick her so many times before anyone stopped him? Why does Avery not have any memory of an apology from the boy? Were the boy's parents informed of his unacceptable behaviour? Why wasn't I called when it happened? We're also concerned that there may not be enough knowledge or awareness of Avery's shunt. I was hoping to go into school this morning with Avery to talk to her teacher about all these things, but Avery has been throwing up this morning so will be staying home. I think that it's probably just Brogan's cold - Avery's always had a sensitive stomach and it's not unusual for her to throw up when she has a cold - but of course I am a little nervous, even though she has assured me that she was only kicked in the face and not anywhere else on her head. So I will be keeping a close eye on her just in case. And I have written a letter to her teacher instead. I'll include that at the end of this post.

Avery this morning. She had a bath last night so the blood is gone from her nostrils, and the big bruise on her right cheekbone is hidden by the shadows. Also, most of the scrapes on her skin are pretty much invisible already, thankfully. I can't see the ones on her neck at all anymore. Plus, she was putting on a brave face for the camera! Sweet girl :)

Brogan didn't feel the need for a brave face...! He just plain feels sorry for himself.

Movies seem to help :)

Avery is just attempting to eat a little bit of toast, so we'll see if that stays down...

Here's the letter:

Dear Harmony,

I was hoping to come in today to talk to you a little more about the kicking incident, but unfortunately Avery has woken up throwing up this morning, so she will not be coming to school. But, while I appreciate you telling me about it when I picked Avery up from school yesterday, there are some things I would still like to discuss with you now that I’ve had time to digest the whole thing and hear some more about it from Avery.

Firstly, I wanted to know what sort of discipline Eli faced after kicking my child repeatedly in the face, and whether his parents have been informed. While I understand that this was not something he has done in the past, I’m still a little concerned about the fact that Avery has no memory of receiving any kind of apology from him and I want to make sure that he was made to understand that it is completely unacceptable behaviour.

Another concern I have is the number of times Avery was kicked before there was intervention. I asked her if he kicked her once, to which she replied “No, he kicked me lots of times”. I asked her if it was two, three, four or five times, and each time she shook her head and then said “No, he just kept on kicking me”. I am well aware that it is impossible to keep your eyes on every child at every moment, and it is understandable that a child could kick another child once or twice before it was noticed, but I don’t understand how Avery got kicked multiple times before anyone was able to put a stop to it. I know that even with three adults supervising, there are still more children than adults and you can’t watch every child all the time, but you only have one child who physically cannot run away. You also, as far as I know, have only one child for whom blows to the head could land her in the hospital for brain surgery. I consider it very lucky that Avery suffered all these kicks to her face and not to the side of her head, because if he had been kicking her in her shunt then it’s very possible that she would be in the hospital right now. Even now, with her assuring me that she was only kicked in the face, I am watching her very closely for signs of shunt problems, especially since she’s been throwing up all morning. As far as I can tell, the bruises are limited to both cheek bones, her nose and one side of her neck, but I am still nervous.

Please understand that I am not blaming you or any of the aides for what happened, but in the future I would like to think that it would be handled a little differently. I am not happy that Eli was able to kick her at least 4 or 5 times before anyone stopped him. I would like to know what steps have been taken with him. I would also have thought that it went without saying that I want to be called as soon as Avery receives any kind of injury to her head. While Avery is generally a very healthy little girl, her wellbeing and life itself depend on a very fragile medical device, and I need to know when there’s a chance that she’s been hit or hurt anywhere on her head. I think maybe it would also be a good idea for Avery and me to spend a few minutes with you (and anyone who works in the classroom with you) to help you get familiar with where her shunt is, what it feels like, what sorts of things should be avoided, and which symptoms could mean problems. I hope that maybe Avery will be well enough to come in tomorrow so that we can see you before the break, but if not I will come in after the break. I would appreciate a response to some of my questions if you wouldn’t mind calling or emailing me at the address above.

Thank you,

Josephine Andersen

I emailed it to Gabe to see if there was anything he wanted to add, and he said that he thought I should take out the part about not blaming the teachers since it's their job to keep our child safe, but I don't think I need to start throwing blame around at this point. Although I do blame them for the fact that he was able to kick her so many times before they stopped him...where were they?? And they really should have called me.

Update:
I just got off the phone with the teacher. She told me everything that happened from her perspective, emphasizing that it all happened so fast and that by the time they got back to the classroom from the nurse's office all the other children were already putting their coats on to go out to the bus. She says that she and one of the aides were out in the playground and that the aide saw the boy kick Avery, so she ran over there but before she got there he kicked her again. She says that she (the teacher) then checked Avery into the nurse's office at 2:20pm, and that her nose stopped bleeding pretty much as soon as she wiped it clean. They iced her cheek and checked over her arms and legs for any other bleeding, and then by the time they were finished it was time to go home. She confirmed what Avery told me about how the boy didn't seem to be mad or angry, but was just kicking for the sake of kicking. She says that the nurse told her that if he had damaged the shunt at all then they would have been able to tell immediately. Rubbish, I say. I told her that just wasn't true and that the nurse most likely hasn't had all that much experience with shunts. I didn't say that I would prefer for people to not pretend to be experts on a subject if they're not. I also told her that there were definitely more than two kicks. Unless of course the boy has a really big, really weird shaped foot. I also told her again that I absolutely should have been called, because I certainly wouldn't have wanted her to be put on the bus if I hadn't happened to show up to pick her up. She said that she would have probably called me if I hadn't come. Then she rephrased it without the "probably". She has agreed that it would be a good thing for them to know a little bit more about Avery's shunt since apparently they don't know much at all. She has promised that they will be watching the boy like hawks from now on, and that the parents were informed of his behaviour and were very upset. She also said that they have a few boys who are starting to behave a little more violently, although I don't know how that was supposed to make me feel better. Sigh....she said a few more things but Avery needs me (I need you to come look after me Mom) so I have to go.

Also, Gabe is not happy that I have written about this on my blog...he thinks it makes it sound like we live in a bad neighbourhood, because no other 4 year old has ever been hurt by another at school.

Anat Baniel method

This is a picture Avery drew yesterday - she did the whole thing by herself with the exception of the ears, which Daddy drew! I went downstairs to admire it when she was finished, and I said "It even has four feet like a real cat!!" to which Avery replied "No Mommy, cats don't have feet!! They have paws!" Silly me :)
I mentioned a couple of weeks ago that we had been looking into some alternative therapies to try out with Avery. One of those that we've been researching is the Anat Baniel method. In fact, it was one of the first ones we started looking at. Several months ago, someone who came across my blog offered to send me a copy of Anat's book Move into life, if I agreed to review it on my blog. I'm afraid I haven't yet reviewed it, but I am very excited about it. The book itself is really aimed towards adults, but Anat does a lot of work with children too, and I have been very interested in that. When I got the book, there were several DVDs which were fascinating, and I made Gabe watch them too. I found a practioner who works in northern Virginia, and we have scheduled Avery to see her 3 times during the first week of May. I am excited to see whether this can help Avery, so watch this space :)

A few random catch-up photos

My ticklish boy - photo taken by Avery :)
January 8th

Brogan helping me load the dishwasher....with fridge magnets....
January 11th

Avery's Lion! And her demonstrating how it roars :)
March 3rd

Brogan standing at the bathroom sink filling and drinking from a tiny cup...
March 4th

The Rat and the Super Reader!

Walking with the quad cane

Remember what I said yesterday about Avery being able to walk really well with her quad cane when she's in a familiar "safe" place? Well, here's some evidence of that :) I took this video this morning after physical therapy. With my phone, which is why the video quality isn't exactly top notch! We were leaving the hospital. The halls were empty, and she's been in this hallway a million times before, so she felt pretty safe I suppose, and she was really moving fast!

Report Card

I don't have much time to write because I have a painting I need to finish by the end of the week....! It was ordered a couple of weeks before Christmas, and then I found out I was pregnant and have been sick and out of commission since then! So now that I'm feeling better I really need to get on the ball....the poor woman who ordered it has been very patient, but it's been 3 months now since she ordered it! SO I will try to be really quick tonight.
Last week I had a meeting with Avery's teacher to discuss her progress. Her goals and progress reports are divided up into the following categories:

• Adaptive/Self Help
• Fine/Visual motor skills
• Cognitive
• Gross Motor

At the end of the last school year we got together with her teachers and therapists, etc, to talk about her goals, and she had some very specific goals for each category. They give her grades of S for sufficient or M for mastered, and her latest progress report was covered with M's, which was really nice to see! Her teacher says that the main areas where they are really having to push her, and she pushes back, are in the Self Help category. Stuff like her refusing to do things for herself and waiting for someone to come help her instead. Like taking off her coat - she can undo the zip, but she has a really hard time pulling the sleeves off, so she just won't try. And in the bathroom she's started to refuse to even try pulling down her own pants, even though she has been able to do it herself for a while, albeit very slowly.
Also, obviously, she is still struggling with a lot of the gross motor skills, although she has done a very good job of meeting most of her goals! She still uses her walker when they play outside on the playground, and she apparently can pretty much navigate the whole thing by herself now, including going up and down the steps a lot of the time. Gabe and I have been talking about bringing the walker home again, because although I would ideally like for her to be using her cane as much as possible, when we're out in public she still needs to hold my hand probably about 90% of the time, which makes things difficult sometimes. And it also means that she's not enjoying quite so much independence as she used to when we primarily used her walker, because she can't just go running off by herself. In familiar places like school, home and the hospital (therapy) she can use her cane with no help, but other places she really needs help a lot of the time. But anyway, her teacher says that she hardly ever crawls at school anymore, which is exciting! She says that even in the classroom sometimes she will stand up and use her cane without any prompting, which is great. She's still having a hard time carrying anything around when she's using her cane, and isn't quite keeping pace with her classmates, but she is doing a great job.
Other than that, one of her exciting developments is an increased interest in interacting with her friends! Her teacher was telling me that Avery will now initiate play with her classmates, rather than just responding, and this is something that we have been noticing too! Whenever I pick her up from school these days it takes us a few minutes to get out of the door because she wants to say goodbye to all her little friends :) Also, at the pool last week a little boy who was probably a year or two older than Avery came over and said hello to me, and Avery looked at him and said, "I want to play a game with you!" That would never have happened before! Not only agreeing to play with a child she doesn't know, but being the one to initiate it! And they played "sharks", and at one point he pounced on her just a little too hard and she got a little water in her mouth and nose, but she didn't freak out, and she even still played with him after she had finished coughing! It was very exciting for me to see :) Speaking of the pool, she is getting so confident walking around independently in the water! She will just walk all over the pool now with no help! She just decides where she wants to go, and just goes!
Anyway, that was pretty much it for the school report. Oh, except that we've also been concerned about how easily fatigued she has been for the last several weeks, and they've been noticing that at school too. Harmony (her teacher) thinks she's not as happy at school as she has been, and she thinks that maybe she's struggling a little bit with being way ahead of the rest of the class cognitively and verbally. A lot of the other children are in the class for speech delays and things like that. There are days as well where she says she is just too tired to do anything really. I'm a little nervous about the fatigue, because she was so tired before she was hospitalised for her shunt problems last year....although she hasn't been complaining of headaches or dizziness, so it could just be another growth spurt. It's just been going on for a few weeks now.
Anyway, I must go get my children ready for bed now! Goodnight!

Updates

Avery has had a couple of doctor's appointments this week, and I think it's about time I stop neglecting my blog (and everything else), so here I am!
On Monday morning we went to see Dr Facciani, Avery's nice ophthalmologist. You might remember that at her last appointment I mentioned Avery's septo-optic dysplasia which her old neurosurgeon had deemed too insignificant to mention to us, and it changed almost everything about how the ophthalmologist perceived Avery's eye condition as well as his treatment plan. Previously, surgery was always in Avery's future, but now it's not likely that she'll get it. We don't know for sure yet how much depth perception she has, if any, but what he says now is that it really takes a backseat to her vision, which the surgery is not likely to help. We're still patching, but even that doesn't seem like such a big deal anymore. However, we are getting a reusable fleece and velcro patch which fits over her glasses, which I think will be nice because we won't have to stick it onto her skin anymore. Gabe wasn't convinced we should get one since they're $20, but he's never tried to put one on, and if you've ever tried it you'll know how annoying it is to have your eyelashes brush against it every time you blink! Dr Facciani would like for her to be wearing her glasses more than she has been (she pretty much just wears them at school right now), so we'll be working on that.
Really though, I do know that her problems really could be a lot worse than they are, and not only her vision problems! I know that it's not uncommon for children with similar conditions to suffer severe vision loss, and Avery's vision is pretty good. If all she has to deal with in the long term is glasses and a lack of depth perception we should certainly count ourselves blessed.

Yesterday we drove down to Radford for another appointment with Dr Brown, the physiatrist. I rescheduled this particular appointment several weeks ago because we had made the decision to stop giving Avery valium since we hate it and weren't seeing any positive results, so I wanted to talk to him about our options. We stopped giving her the valium the week that she started wiggling her toes because it seemed like the perfect time to test the practical effectiveness of the drug: if she continued to be able to have some control her feet and toes then it wasn't the drug that gave her the ability. In addition, Lisa (PT) started measuring her range of motion once a week to see if that got worse without the valium. All of these things have pretty much stayed the same, so I still think that it was a good choice to stop the drug. At the appointment yesterday they got similar measurements for her range of motion. Some were a few degrees worse than last time, but some were even a few degrees better. However, they said that the dystonia and clonus were both actually worse than last time. Sooooooo, he is absolutely adamant that Avery needs to be taking something for that. That "something" being either valium or baclofen. Boo. In the end he said "Obviously this is a free country and I can't make you do anything you don't want to do, but I will give you one promise: If we don't do something, I promise you that Avery will start having bigger problems." He says that he realises that the drug option is the lesser of two evils - the greater being not giving her the drug. So I suppose we're going to be moving on to baclofen. :(
I also took with me a list of the various therapies I've been researching. At the beginning of the year we decided that it's time to try something in addition to the traditional therapies we've been doing til this point. It is now 9 months since Avery was in the hospital with her shunt problems, and she still has not gained back the ground that she lost during those two weeks. She can sometimes take 1 or 2 independent steps, and I don't even remember the last time she stood independently for more than 30 seconds or so. Before she was hospitalised last year she was taking 8 or 9 independent steps and standing for up to 7 or 8 minutes. We just feel that she needs something more than what she's getting. We're going to be starting up with the horse riding again soon, although it will technically be therapeutic riding (which is not covered by insurance) rather than hippotherapy (which is covered) because Lisa (PT) was the only one licensed to do it and she's out on maternity leave! (She had her baby girl a couple of weeks ago, and we're so excited for them!) I think it will help to have her on a horse again. I'm also trying to take her to the pool twice a week, which is actually starting to happen now that I'm not feeling quite as terrible as I was. But I seriously think that the pool helps a lot. Last week I took her twice, and she always starts out walking around with the support of 2 noodles (or nurrrrrdles, as she likes to call them), but then we do a game where I stand her up by leaning against the wall and take her noodles and she has to come and get them from me. The water almost comes up to her shoulders, so it gives her some decent invisible support. She says "don't go too far Mom!), so I only go about 4 or 5 feet away, but then once she starts walking I start "accidentally" floating away, and she's been following me further and further, which is exciting! Last time we went she walked all the way from one end of the pool to the other, and about a third of the way back again before she lost her balance (don't worry, I always catch her before she goes under!). That's probably about 25 feet. If this little exercise does nothing else, I think it helps give her confidence in her body and in her ability to control it, and that is very important. I think that she always does a little bit better on solid ground after she's been in the pool.
Anyway, that is what we're doing, but as I said, I've been researching options for what else we can do. I showed my list to Dr Brown and what he said was "Yes, any of those could help with the symptoms and help relax the muscles, but of course they're not going to help with the underlying cause", which of course I knew. I was hoping for some recommendations but oh well. I will go into what I've been researching in another post because I think this has been long enough already.