The Walking Game

Avery would like to introduce you to a little game Daddy came up with called The Walking Game. She LOVES it and will ask to play it on a regular basis. Of course, if you ask her how she plays the walking game, she would probably tell you that you play it by eating chocolate, but there is more to it than that :) And this morning's game was actually played with pieces of granola bar, not chocolate!
Here's how you play:

Walking with crutches

I just wanted you to see how much progress Avery has made with her crutches in the last two months. I need to get soem better pictures, but these will have to do for now.
This was Avery at the end of November. As you can see, she still needed lots of hands-on help to use her crutches.

This was her a couple of weeks ago. She wasn't in the mood to use her crutches that day, so we could only get her to use one and hold daddy's hand, but she can use them all be herself now! And you can see the difference in posture too.

Here she's using one crutch and holding the rail with her other hand. Little Miss Independent! She's doing so well! In her weekly PT session she's even been working on using them to go up and down stairs (which is too scary to watch - I don't know if I'll ever be able to let her do that by herself!!!). Also, she's been working on sitting in a chair and picking her crutches up from the floor, putting them on, and standing up all by herself, and has been doing marvellously at it!! She's even managed to get up off the floor with them with minimal assistance! She is one amazing little girl :) I'll try to get more pictures of all this wonderful stuff she's been doing!

Good, Better and Best

It was ward conference at church on Sunday, and one of the things that was mentioned a little bit in Sunday School was the fact that often times we're not having to choose between doing good or evil, but rather we're having to choose between good, better and the best things to do. This is something I'm sort of strugglin with I suppose right now, because I have so many things I'm trying to do, and they're all good things! I just don't have time to do them all, so I need to try and figure out what my priorities should be and do those things first. Things battling for position on my list of things to do are:

• Catching up with both my blogs which have been sadly neglected of late...


• Setting up my etsy shop (see sidebar), which means lots of sewing to stock it up because I feel that to really give it a chance to see whether I can make some money on etsy, I need to really go all in. So that's been taking up a lot of time
  
• Working with Avery on her PT and OT stuff, and the rest of the time trying to make sure she's not w-sitting, and not watching too much tv
  
• Normal "mother" stuff which takes up the majority of my time, of course
  
• Personal goals of reading/studying scriptures every day
  
• Trying to keep up with housework when mess seems to ooze out of the woodwork every time I turn my back.
• Working out and losing this baby weight...this is the goal which is probably the most neglected...I don't even want to admit how few times I've used my eliptical machine since the beginning of the year!!!

Anyway, I'm just letting you know why I've been so bad about updating this blog recently. Excuses, I know, but good excuses! I just decided to try the etsy thing in earnest after Christmas after helping my mother set up her shop, and I'm donating a gift for a "virtual baby shower" next Wednesday, so I'm working like crazy to try and fill up my shop so that there's lots for people to see when I get my little moment of exposure. So I've been sewing sewing sewing, and I'm also planning on listing all my art there and deleting my art website because I think it will be easier and cheaper to keep etsy up to date rather than having to run my own website.

I'm sure you don't want to know any of that.

So anyway, rather than trying to go back to where I heartlessly abandoned my website, I'm going to start from here and try to work backwards if and when I have the time. So here's a little about what we did today!

We met some friends for a play date at the mall! They usually have the coolest little play area with soft padded animals the little ones can climb all over, and Avery LOVES it, but after getting all the little ones (Our two and our friend's 3 little ones) out of the cars and into strollers, and getting Avery to walk with her walker all the way from the van to the play area, we discovered that it was gone!!! Sometimes they take it down for Christmas displays and stuff, but I can't imagine why it would be gone right now, so I'm hoping they haven't decided to permanently remove it! There was a little area with some of the ride on toys that you put quarters in, so we decided to let the little ones play on those for a couple of minutes. But while we were there, the nicest lady handed my husband a handful of quarters saying that she didn't have any grandchildren of her own and she liked to see children being happy and having fun, so she basically funded an afernoon's worth of fun for our children! She was so sweet!

Here you can just see Brogan in his baby carrier (which I'm wearing but you can't see me!) on the left edge of the picture, and you can see our 3 children on 3 separate ride on toys having a great time! Avery's on the train in the front :) And in the background watching on is the lovely lady who funded the whole thing :D
Avery riding on the motorbike toy. She used to be a little afraid of these toys, but these days she loves them, and she was very sad when we made her leave this afternoon. I know, we're such mean parents....

This is Avery and Brogan all ready for bed tonight. It's funny because on Saturday I made Avery this new pair of PJs (because footie pajamas are great, but because of Avery's CP, the one-piece footie PJs are impossible to get off her quickly if she needs to use the potty, and for some reason you just can't buy two piece footie pajamas for anyone but babies, so I designed and made some, and will be making some for my etsy shop!), and last night was the first time she wore them, so I wanted to get a picture of her in them. So after I got her all ready for bed, I asked her to sit on her step stool so that I could take some pictures of her, so tonight after she got all ready for bed in the same pajamas, she crawled right over to the step stool saying "I need to smile on the step stool with Brogan, and Mummy need to go get the camera!" It was funny! So how could I say no to that?? I love my babies SO MUCH!!!

Blog browsing

I want to tell you how I've spent the last 2 hours of my life and why it's made me feel so blessed. I have been blog browsing. Normally, sitting in front of the computer for this long would make me feel like I was wasting my day when I have so many things I should be doing, but these past two hours have made me feel enriched. I am so grateful for those of you out there who take the time to share your experiences about raising your beautiful, extra special children through your blogs. I feel like a part of a beautiful community, and even though I've never met any of you, I feel so connected to you and it makes me feel so good. Thank you so much to all of you for sharing. And if you have visited my blog, I would love to hear from you too -sharing makes me feel so good, and I'd love to hear your stories. Please talk to me so that I can find your own blogs too if you keep one :)
While there is a lot that is wrong and scary about the world today, I feel blessed to live in this day and age where the internet can make me part of this amazing community of wonderful mothers and even more wonderful children. It makes me so grateful to know that my daughter is growing up in a world where she doesn't have to feel like the odd one out, because she will have access to this huge network of people with problems just like hers.
So thank you. For being there. I would feel so much more alone without you and your willingness to share your experiences.

Avery's new braces

Well, they're not really that new anymore, but I never posted a picture of them before :) She got these about a month and a half ago, and she's been doing really well with them.
Oh!! And I forgot to mention her biggest news since last time I posted! Avery is potty trained! She was almost done in the summer, but then Brogan was born and she started preschool, and she regressed, but now she's out of diapers except for nighttime. And she's dry every morning, so I should probably put her in underwear to go to bed too, but I'm scared...! But YAY! It's been about 3 or 4 weeks now. She's had a couple of accidents this week, but overall she's been marvelous. Lovely girl.

We're still here!

I just wanted to let you all know that I'm still alive! I know you must have been wondering since I've not posted for so long...sorry about that :/ The holidays consumed me! It was lovely, but it meant that I didn't have any time for posting, so I apologise, and promise to be better :)

My other blog has also been neglected, but there are a few photos from Christmas over there if you'd like to take a look. But I hope you all had a Merry Christmas, and I wish you all a happy new year too :)

Of course, I have all sorts to catch up on, but I'm not sure where to start. I suppose today I will just tell you about Avery's IEP updates at school. It's been quite interesting. For the first time, Avery will officially be receiving occupational therapy in addition to the physical therapy! Sometimes I find it a little difficult to read some of the various evaluations she's had throughout her short life, because they make me want to go find the person who wrote them and say, "Well, yes, it's true that she can't do that, but what you don't understand is how amazing she is!!" But I try to squash those feelings because I know that it just means she'll get even more help, and she does need help. So, you probably don't want to read the whole thing, because both the physical and occupational therapy evaluations are about 2 or 3 pages long, so I'll just try to summarise a little bit.

Occupational Therapy

Avery was referred to an OT because of a few things they noticed in the classroom: difficulty crossing midline; decreased ability to coordinate both hands; and difficulty with fine/visual motor skills such as stringing beads and imitating horizontal, vertical and circular strokes. *The adoring Mother in me wants to tell you that Avery loves drawing loopy circles, so she must have just not felt like it that day!!* She was tested in November when she was 33 months old, and apparently she did a "visual motor integration subtest" in which she "demonstrated solid skills to 22 month level and scattered skills from 24 months to 30 months." Her greatest areas of weakness appeared to be in scissor skills, imitating block designs, opening and closing screw-top bottles, and using immature grasping patterns on tools. *sigh* Sometimes these things make me feel like a bad mother, because I haven't been trying to get her to use scissors, and I thought that the way she held "tools" worked just fine, and I thought that she opened bottles pretty well for her age. Another example of how her being my first child means that I'm not as aware of what's age-appropriate development. Anyway. Here was the summary:

Avery presents with global developmental delays due to her medical condition
of Cerebral palsy, which impacts her ability to participate in fine motor, visual motor and self-help skills in the classroom environment. Though she is displaying emerging grasping skills, Avery displays below average skills in the fine motor domain due to weaknesses in eye-hand coordination. It appears that Avery will benefit from direct Occupational Therapy services to address these areas of need.

These are the goals which were added to her IEP as a result of her OT evaluation:

• Avery will imitate a horizontal and vertical line at least 4/5 trials on 5 separate occasions by March 5, 2009. I don't think this will be a problem since she's already doing horizontal lines at home.
• Avery will remove all objects from a container by reaching through the opening by February 5th 2009. I'm not sure why this is on there actually, since she learned to take blocks out of their box by reaching in and taking them out one at a time a long time before she figured out that she could just pick the thing up and pour them out.
• Avery will string at least 10 large beads on a lace by March 5th 2009
• Avery will imitate circular strokes on 4/5 times on 4 separate days by April 5th 2009. Again, I don't know why this is there since circles are her default...
• Avery will draw a person with a head and at least 3 body parts when asked to draw a picture of herself on 3 separate occasions by May 30th 2009. This one is interesting....she's never even tried to draw a person....
• Avery will snip an index card with scissors, making at least 10 snips around the edge of the card by March 5th 2009.
• Avery will play spontaneously (using both hands) with messy materials with no avoidance responses on 4 of 5 occasions by April 5th 2009.
• Avery will use functional 3-4 finger grasp on writing implements with minimal verbal cues on 4/5 opportunities by June 30th 2009.
• Avery will orient scissors in hand correctly to cut along a straight line within 1/2" of highlighted line by June 30th 2009.

Physical Therapy

I'll tell you straight up that the main concern I have with the PT eval and goals is that she wants her to use her walker more and not use her crutches as much. I can understand this since she is faster and more stable with her walker, and it would be safer with all the other kids around and everything, but she's not going to get faster and stronger with her crutches if she doesn't use them. And since she's made vast improvements with her crutch usage in the last month or two, I feel that the should be integrated more into her daily life, including school. Her physiatrist and other PT seem to feel the same way I do, so I've encouraged some comunication between them, so hopefully they'll be able to coordinate there since we don't want conflicting goals.

Of course, the overall PT eval wasn't really anything we didn't already know - w-sitting, assistance needed with all upright mobility, trouble getting up and down steps, decreased maneuverability (which wouldn't be so much of a problem with the forearm crutches, I might add!!!), unable to use moveable playground equipment such as tricycles. You know, all of that. Here's the summary:

Avery is a 2 year olf student enrolled in the REACH preschool program. She has been diagnosed with cerebral palsy due to Dandy-Walker syndrome. This diagnoseis decreases her overall level of independent and safe mobility within the classroom, school building and on the playground. Avery uses a posterior walker for primary mobility at school, but exhibits variable speed and is unable to keep pace with her peers at this time. (note - she is perfectly ABLE to keep up...she's just easily distracted and there are a lot of kids to look at on the way to the classroom from the bus. Not motherly bias, FACT) She also has forearm crutches for use, but these are not safe to use at this time in school due to factors noted above. (Her walker wasn't safe to use when she first started using it either, but she gained stability through continued use...how else is she supposed to get "safe" on her crutches?) Avery requires assistance for transitions between floor and sitting or standing, and is unable to get in/out of her seat at the table for meals or for fine motor tasks. She also requires assistance to change seated positions on the floor and tends to sacral sit rather than sit in a more upright position. Avery also exhibits some self stimulatory activities which have increased in the past 4-5 weeks, and she is difficult to be redirected out of these activities, especially when on the playground.

The self-stimulatory activities she's talking about there are Avery's tendency to flap her arms when she's excited, and how she can fixate on things like watching the other kids swinging on the swings, and when she does fixate like that it's hard to get her to do anything else - she'll just sit and watch. And flap!

A little side-note here, and tribute to the good father that is my husband. This has been the second occasion that I can think of where he's turned out to be right for worrying about something which I told him not to worry about. The first time was with Avery's clonus. That's the way Avery's legs shake if they're in particular positions. We noticed this months befpre her CP diagnosis, but I told him not to worry about it because my legs used to do that when I was little, but then it turned out to be one of the manifestations of her cerebral palsy. 1 point to Daddy. This second time with the arm flapping gets him 1/2 a point. I told him not to worry about it because I'm sure a lot of 2 year olds flap like that when they get excited, and while that's true, sometimes it does seem that she's not really aware of the fact that she's doing it until you point it out to her. The flapping itself is not the problem, it's the awareness. So the tally is: Daddy 1.5, Mummy 0. Boo.

Anyway, this post is taking way to long, so I'm not going to type out all the new gross motor goals they put on her IEP. They're all about gaining more independence though. But with her walker, not her crutches. Going up and down steps, getting in and out of all classroom chairs, carry things around the classroom, get to the classroom from the bus in less than 8 minutes...you know, that sort of thing.

Now I'm going to bed. Sorry for how long this is. :)