Wednesday, September 30, 2009

Beautiful wedding...no camera

This past weekend we went up to the DC area to go to the wedding reception of one of Gabe's cousins. I almost backed out at the last minute because I just didn't think it was going to be worth driving all the way up there just for the wedding reception of a relative I'd never met, but I am so glad we went! We went up on Friday evening and stayed with Gabe's cousin Tommy, which actually worked out perfectly because his wife and children were out of town which meant that Avery and Brogan both got real beds to sleep in! We had fun spending time there with him.
Saturday evening we picked up Claudia (our sister-in-law's old au pair) who had agreed to come and baby sit our children while we went to the reception, and then we drove up with Joe, Jess, Tommy and John.
The reception was the fanciest one I've been to in...well, ever really! It was so beautiful! As soon as we arrived I was regretting my decision to leave my camera at home! We didn't have any batteries, because our camera eats through them so fast these days, so I just assumed that someone else would bring a camera, but none of us did, which was such a shame! And that is why this is the only picture I got - taken with my phone.
Anyway, the reception was at the home of the bride's parents, and it was gorgeous! The house was amazing (well, what I saw of it anyway!), and the reception was held in a huge white marquee behind the house, with candle lit lanterns hanging from the ceiling, hundreds of beautiful white flowers and really great live music. Oh, and the food! Sooooooo good!
I find that while I've always quite enjoyed weddings, I just love them especially now that I'm married! Even though this reception was nothing like my own, it still reminded me of my own wedding day, and how happy it was. I loved seeing how happy and in love the bride and groom were because, again, it reminded me of us, and made me remember all over again why marrying my husband was the best decision I ever made. Sometimes it's easy to get caught up in the day-to-day of raising children, earning a living, paying bills, keeping house, etc etc, but it is a wonderful thing to be reminded of all the reasons why I chose to do all those things with Gabe.
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Monday, September 21, 2009

Walking

Since the day Brogan was born, I have been both looking forward to and dreading the day that he started walking.
Sometime last week - after walking a few feet at a time for about a month but still mostly crawling - Brogan decided that he preferred walking to crawling. Of course we are all so excited and so proud of him! He is so proud of himself too, and he is just adorable to watch as he walks this way and that way, stopping, turning, bending down, squatting and standing back up like a pro! Picking up a toy in each hand and carrying them around as he wanders around the house!
Underneath the joy of seeing my son walk, there is a large part of me that is so sad and worried about my little girl and how she will cope with having her baby brother doing all these things that she just can't do.
Up until now, Avery has been excited whenever Brogan has walked, clapping her hands and shouting "Good job Buddy! Look at Brogan!! He's walking!!", but now that it is not a novelty anymore, she is starting to be bothered by it.
Gabe and I both worry a lot about this.
The other night, Gabe had the two of them out on the trampoline before bed, and they were having a great time. But then apparently Brogan stood up and started walking across the trampoline, and Avery got upset and said "No Brogan, don't walk! I want to walk!" and she tried to stand up, but only got as far as almost straightening up before she did a little jump and fell down.
Today at physical therapy, we all took a long walk through the hospital together. We're trying to get Avery comfortable using her cane independently in places other than just the gym where she does therapy - that is really the only place she feels safe enough to use her cane without holding someone's hand. So we walked all the way down the hall, up the elevator and through the main lobby. Avery did an amazing job, and managed to walk almost all the way to the lobby with just her cane, only stopping to rest 4 or 5 times. She had a little red turtle that we started out having her throw as far as she could ahead of her so that she could walk to it, pick it up and throw it again - motivation to get her all the way down the hall you know. But that didn't work because Brogan kept on refusing to hold my hand and would go racing ahead of Avery to pick up her turtle, which naturally was quite upsetting for her.
Obviously, it is possible that this may be the motivation Avery needs to get her walking, but at the same time it may just be disheartening for her, and we're in a little bit of a quandary over how we should handle it.
Of course we want Brogan to know how proud of him we are, but at the same time it would break my heart to think that it could make Avery feel bad about herself.
She is old enough now to be aware of the fact that children her age and much younger are walking and running. How do I continue to push her and encourage her in her efforts to walk, without making her feel inadequate in the light of her baby brother's easy transition to walking? How can I do it and at the same time let her know that everything that she is and does makes my heart just burst with love and pride?
Recently, in conversations with Avery I'll ask her to do something and she will say "Oh, and then that will make you so happy?", as if she needs to do anything to make me happy. I don't want her to think that she has to walk to make me happy, or that she has to do anything to make me happy! Of course I want for her to be able to walk, but for her sake, not for mine! And I certainly can't bear the thought of her imagining for even a second that we love her any less, or are even a tiniest bit less proud of her than we are of Brogan. I can't even begin to express how proud I am of her....how much she already, at the tender age of 3, inspires me to be more than I am, to work harder than I do. If only we all could work as hard as she does and do it with the sweet attitude that she has always had, the world really would be a better place.
Oh, my heart aches for my precious girl.

Sunday, September 20, 2009

Fish

Back in July after Avery got home from the hospital, I took my mother yard sale-ing before she went back to England, and at one of the yard sales I found a little fish tank with a filter for $2. I love bargains! The thing had pink rocks, a pink lid, a pink filter and pink feet, but after I got it home I cleaned it and spray painted all the parts black, and replaced the rocks with nice neutral-coloured rocks, and it looked just great! We took Avery to PetSmart to pick out a fish, and came home with this pretty little orange and white goldfish. Avery and Brogan adore it!


For a little while the fish sat on the dining room table, and Brogan would sit happily squealing at it during meal times. Then the fish moved up to Avery's room for a little while, but that made cleaning the tank a pain, and I think it was a little lonely up there! So for the past few weeks the fish has resided in our front room next to the piano:

I think this is a lovely home for him (I've no idea whether it's a girl or a boy fish, but I generally call it "he"!) Avery and Brogan both go over to talk to the fish every now and then, and I think the soft sound of the water pouring out of the filter is a nice soothing background noise! Recently, I have to admit that I've become quite attached to this fish. I know it's crazy, but a silly little part of me thinks that he gets excited to see me! Whenever I walk by he swims over the the top right corner where I usually give him his food, and in a weird fishy kind of way I think it's super cute! This fish makes me smile even when there's no one else around, and I hate to admit it, but I've caught myself talking to it a couple of times...
Here's the thing though. This poor little fish still has no name!! At first we didn't rush to give him a name because, well, fish often die sooner rather than later, and we didn't want to get attached just to have him die! But now I am attached to him, and I think he needs a name. We asked Avery several times to give him a name, but she says that she doesn't know what his name is. She is adorable with it though - she is now able to pull up to stand next to the fish tank and feed him all by herself (well, I open the food jar for her), and she's so sweet because she'll talk to it like it's a dog and say "Here fish! Come on fish!" and clap her hands softly in a very encouraging sort of way! Then after she feeds him she says "He's eating it! You're welcome fish!" The other day she was talking to the fish and then she looked at me and said "I think the fish is so excited to see me!"
So you see, the fish needs a name.
Suggestions are welcome :)
We'll run them by Avery and let her choose!
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Wednesday, September 09, 2009

Too much excitement...

Well, it seems that Avery's first day at her new school followed immediately by hippotherapy just might have been too much excitement for one day! She woke up with a headache in the middle of the night, and then woke up again and threw up. Poor girl. So she will be staying home today, and hopefully she can go back to school tomorrow.
She did have a great day though! She LOVED school! When I picked her up to go to hippotherapy, she was so excited and as we walked back to the van she told me all the exciting things she did and how much fun she had had! Then she started talking about how she was going to tell Sugarfoot (her new hippotherapy horse) all about it, and that Sugarfoot was going to be so sad because she was going to go home and he was going to be all alone....! She had a very happy day!

Tuesday, September 08, 2009

First day of School


My little girl is at school - the first day of her second year of preschool!! We met her teacher last week, and she seemed nice, although I am going to miss her teacher from last year as well.
Avery's bus was scheduled to pick her up outside our house at 11:34 this morning, so we went out a few minutes early so that I could take a few pictures of her. I don't know why I thought I needed to do this early because of course the bus was late, what with it being the first day of school and everything! But it was ridiculously late - after several phone calls and 40 minutes of waiting, I finally packed my children into the van to take her to school and then passed the bus coming our way a block from our house, so turned around and went home again to load her onto the bus!!! Hopefully tomorrow will be better, and hopefully by next week they'll have it all figured out and be able to get my daughter to school before 12:20. Especially since school is supposed to start at 11:45!!
She has been excited about school, but I am also a little worried about her because while she has regained pretty all of the progress she lost during her hospital stay in June, she still hasn't regained all her energy. She's been tired almost all the time. Yesterday I took her and Brogan to the mall so that she could do some good walking with her cane, and she started saying she was too tired before we'd even managed to get out of the parking lot. I had to keep on reminding her that we'd only gone to the mall on the condition that she walked, and that if she didn't want to walk then we would go home and not go to the play area. So we finally made it to the play area, and she and Brogan had a super fun time playing there, but by the time we got home she was exhausted. After walking a total of maybe 3 or 4 hundred feet, and crawling around the play area for about 25 minutes. I mean, all she did for the rest of the afternoon was lie on the couch and watch a movie, except for 3 or 4 times when she got up so that she could come and tell me that she was too tired. So I don't know how she's going to cope with school if that continues....
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Sunday, September 06, 2009

Neuro Developmental Clinic visit

I mentioned last week that Avery had an appointment with Dr Kerkering at the pediatric neuro developmental clinic. Well, that was on Monday afternoon, and I've been mulling over it all week and now I think I'm ready to blog about it. That makes it sound bad....it's not, it's just been quite a bit to think about. And then I got the official report in the mail yesterday and so have had even more to mull over. (I love that this doctor does that! Makes me think that all specialists should mail copies of the reports to the parents - these appointments are often a lot to take in all at once, so a written report would really help us remember everything that was discussed!)
A couple of things I want to talk about actually. One being the actual evaluation, and the other being the fact that there are things in the report about findings from Avery's most recent MRIs which were never explained to me at the time, and should have been.
So.
Here we go.
This is probably going to be pretty long....
When we accidentally showed up to Avery's appointment 10 days early (oops), Dr Kerkering was still nice enough to come out to the waiting room to talk to me briefly about why we'd been referred to her, etc, and while we were talking she noticed the way Avery was playing and how much she was flapping her arms. She asked about the arm flapping, and then asked about Avery's language and social interaction with children her own age. I told her that Avery flaps all the time, and that while her speech seems to be really excellent, she definitely is more comfortable talking to adults than children most of the time. She set up an appointment for Avery to get a speech evaluation, because apparently flapping can be associated with communication disorders. I took her to the speech evaluation last week. She passed it with flying colours, and had a blast doing it. So then Dr Kerkering was thinking that she wasn't going to be any use to us at all, but then at our appointment, after observing Avery playing for more than an hour while asking me every kind of question about her, she then said that she felt that Avery has some characteristics of Asberger's syndrome. I have a brother with Asberger's, and it has never even crossed my mind that Avery might have it. Of course, I can understand the reasons this has come up, but at the same time, there are so many things about her that are completely uncharacteristic of Asbergers. She gave me a criteria sheet thing, and I've been through it several times trying to be completely detached about it. Here it is, and I have highlighted the things I think describe Avery. Some of the things (especially in the peer relationships section) I had a hard time deciding, because the questions are designed for older children, but here you go. Click on them to see them larger.


Of course, one of the reasons Dr Kerkering said about not diagnosing at this age is that a lot of these things could also just be some early childhood behaviours that she will grow out of. If you are interested enough to read an entire report, then I have posted that too at the bottom of this post, but if not then I will just summarise very quickly what was said concerning the possibility of Asbergers.
  1. Repetative, perserative play. Meaning, Avery can sit and play with one toy for an hour. Right now she has a set of word puzzles that she can sit at the table and play with for 30 minutes to an hour sometimes. While we were at the doctor's office she sat at the table and played with on of those bead-on-a-wire toys the entire time (over an hour), including conversations with or between the beads (such as "Hey! Where are you going?" "I'm going down the slide! See you later! Wheee!") Apparently this is not normal behaviour. Part of my thinking on this is that an excellent attention span isn't really something to worry about! Plus, since it did take her so much longer to be able to crawl and move around, maybe she just got used to entertaining herself in one spot for longer periods of time.
  2. Difficulties with peer interaction. With children, she prefers to observe, especially in group situations. But, as evidenced during Avery's second sleepover this past weekend, she doesn't seem to have a problem interacting with other children on a one-on-one basis. I was paying particular attention to the conversations she had with her friend Kayla over the 30 hour period she was at our house this weekend, and they seemed completely appropriate and adorable to me. Maybe she's just shy in larger groups, or maybe it really is more interesting for her to watch and listen to what everyone else is doing.
  3. Flapping. She does this all the time, not necessarily just when she is excited or upset. Often, when playing with a toy, she will move one part then flap, then move another part and flap again. She does it without thinking, but these days if you draw her attention to it she will say "I'm flying away!" and can certainly stop once she realises she's doing it.
  4. Atypical use of language. ie Repeating lines from movies and using inanimate objects (including things like block or her hands) to carry out pretend conversations. It seems that a lot of 3 yr olds have favourite movies that they like to watch over and over, and I would have thought it would be pretty normal to quote lines from your favourite movies at this age too. Also, isn't it just a sign of a healthy imagination if she can animate inanimate objects? She likes to pretend.
So there you have it. Nothing to do now really except sit back and watch basically. Dr Kerkering also set up an OT evaluation because she thought it would be beneficial for Avery to have OT additional to what she gets at school. Also, we're supposed to take her to see an Endocrinologist, her neurologist or neurosurgeon, and maybe a Medical Geneticist. And we're supposed to be giving her as much opportunity for peer interaction as possible, probably building up to larger groups. Other than that, we will be going back to see Dr Kerkering next year.

Now on to that MRI review which Dr Kerkering referred to in her report. She says that she had the impression that the new MRI findings had not been fully explained to me. And she is correct. Maybe the neaurosurgeon thought we already knew these thing (probably not) or maybe he decided that they were just labels and didn't really change anything so just sort of neglected to mention them. I don't know. Whatever the reason, I do think that we should have been given the official names of the conditions they found in my child's brain. Don't you think?
So here are the diagnoses which should not be new to me but are:
  1. Periventricular Leukomalacia. Basically dead bits of white brain matter around the ventricles. It is also the most common cause of spastic diplegia, which Avery has.
  2. Septo-optic dysplasia. This is: Agenesis or hypoplasia of the corpus collosum (in Avery's case hypogenesis of the posterior corpus callosum), absence of the septum pellucidum, optic nerve hypoplasia, and often abnormalities in the pituitary gland. When Avery was in the hospital up at UVa there was one day that I remember a bunch of Neurology residents coming in and explaining that they were testing the function of Avery's pituitary gland because "sometimes children with her condition also have abnormal growth hormone activity", and that was as close as they came to explaining this condition to us. Of course, I just assumed that by "her condition" they meant hydrocphalus or cp or something.
Here is the full report Dr Kerkering mailed us. I combined all five pages together into one image, so you will obviously need to click on it is you want to read it :) The pink highlighted bits are where I edited it to correct the information about Avery I obviously didn't explain properly at the appointment. Not important, but I felt better after clarifying it :) I don't feel like typing anymore.

Friday, September 04, 2009

Learning to use a spoon


Ah ha! Success! I got it in my mouth...


Wow, this is serious business.


Oops, look at all this mess! Don't worry...I'll clean it up....


Haha! Just kidding, that's Mummy's job!

Maybe this would be easier with two spoons.....


Nahh, forget it. I'm full anyway. I'll just empty the bowl a bit to make it look like I ate more.....

Wednesday, September 02, 2009

Grandma Pyjamas

When my Mother was here in June/July, she made several pairs of lovely pyjamas for Avery, including this beautiful Winnie the Pooh set. Last week I decided to get a picture of Avery wearing them because they're so pretty, so one night before she got into bed I had her sit on her step stool so that I could take a picture, and I posed her like this because I thought it would be funny, and she just thought it was hilarious!!

I love the look on her face! She's so funny!