Saturday, January 31, 2009

January catch up: Bed time posing


I just couldn't pick a favourite - they're all just so cute! So I had to post them all :) And yes, I know Avery's hairstyle is quite stunning, I spent hours on it...! The night before this I had asked Avery to sit on her stool so I could take pictures of her in her new pajamas, so the next night we got all ready for bed and then she insisted on having her picture taken with Brogan on the step stool :) She was laughing at me trying to make Brogan laugh, but Brogan was too tired to cooperate :)




January catch up: Outings

The park is still a favourite pastime, and we've had a few slightly less cold days that we've been able to take advantage of :)
One afternoon we met up with our friend Ginny and her kids with the intent of taking the little ones to the play area at Valley view mall, only to discover it was not there! So we took them to this little area with ride-on toys in the middle of the mall. There was a lovely lady there who gave us about $5 of quarters because she didn't have any grandkids and she liked to see children being happy and having fun, so that was really sweet! You can see her sitting in the background of this photo. The children had a blast!!

One night we took Avery up to the star because she loves the star but has never seen it up close at night, and I wanted to take her up there before the evenings started getting too bright. She loved it!
You can't tell from this photo, but she was so excited to be there! She was trying twist round to see it, and telling me to look at it! It was soooo cold! Brogan and I went back and waited in the van, because it was too cold for him to be out even though he was wrapped up. When we left Avery was so sad and kept on saying she wanted to go back to see it again, and she cried, so we promised we'd take her back there sometime. After she calmed down she started talking about it and said "We saw the BIG Roanoke star! And we got in the van, and I was sad and I cried because I want to see it" Sweet girl.

January catch up: Conversations with Grandma

"I made a train Grandma!!"
"I'm going to roar at you like a lion Grandma!!"
"I scare you like a lion Grandma!!"
Hearts! This particular Sunday afternoon, Avery happily talked to my mother for more than half an hour! It was very cute :) She had a lot to say :D

January catch up: A girl and her Daddy

Throwing rocks in the river.

Walking to the park. ("Smif park!")
Daddy looked up a recipe for playdough and Avery helped make it...
They had a great time!

January catch up: Living life with this much excitement is exhausting!

All wrapped up and ready to out for a run in the stroller with Daddy, who was trying to get in shape for his snowboarding trip out to Utah at the end of January!

Avery is showing me her very best excited face! It involves finger twiddling :)
















It's tiring work sitting in the stroller for a long run :)



This was a different day - another exhausting afternoon out! She started out on the couch and ended up here on the floor :) Luckily there were cushions (Or "oceans" as Avery likes to call them!) next to the sofa, so she rolled right off and didn't wake up :)

Thursday, January 22, 2009

Breakfast and Bathtime

Avery is quite the determined little helper these days. This was her this morning when I was getting ready to give Brogan some pureed pears for breakfast...I started to buckle him in and she got quite cross with me and insisted on doing it herself! Of course, Brogan was just happy to see his favourite person so close :)




This evening Avery and Brogan shared their first proper bath together and both of them loved it! This was the first time I put put Brogan in his little bath chair thing, which meant there was room in the bath for his sister too. Fun times!




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:

Wednesday, January 21, 2009

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!

Feeling good!

I'm feeling pretty proud of myself. Is that bad?! hehe! It's just that I decided to really try out the etsy thing, so I've been making all sorts of things to sell on etsy, and I'm feeling capable. It's a good feeling! I keep on having ideas about things I want to make, and then I've been able to think about it and figure out how to make them, and that makes me feel good! My latest accomplishments are these 2 piece footie PJs, and matching ties for daddies and babies. Yay!

This is Avery wearing her new pajamas! I think they turned out great. I decided to make them because now that Avery's potty trained during the day we need to start working on the night, and for a child who can't stand properly on her own, one piece footie pajamas are a PAIN to get off, especially when you're in a rush for the potty. But footie pajamas are so nice for this cold weather because it keeps her feet warm without having to wear socks, so I decided the solution was 2 piece footie pajamas, but I looked and looked and couldn't find them anywhere for a child older than about 12 months, which seems silly. So I realised I would have to make them myself. So it took me a little while and lots of staring at her regular pajamas to work out how to make them, but here they are! And she loves them! I've not made any for etsy yet, but that's on my list of things to do.
I made these yesterday after pulling a part one of Gabe's old ties that he didn't want anymore. I love them. The part I'm most proud of is the attachment for the baby tie. I looked everywhere for those clips for clip on ties, but couldn't find them, and then decided that they probably wouldn't be ideal for a baby anyway, so I made up my own attachment, and I like it :) We're not keeping these particular ties because I made them specifically for etsy, but I'll definitely be making some more, and I'll get Gabe to pick out some fabric for ties for him and Brogan because I don't think he's particularly fond of the fabric I chose for these. I got him to put it on this morning so that I could take pictures for listing it though, and I love this picture. I know I'm biased, but that is one beautiful boy! Just like his Daddy :)
Okay, I've finished bragging now. :D

Monday, January 19, 2009

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!!!

Tuesday, January 13, 2009

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.

Saturday, January 10, 2009

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. :)

Sunday, January 04, 2009

Cousins!

We went up to see Joe and Jess and their girls for a long weekend just before Christmas. My mother had never been to DC before, so we wanted to take her there, and we love spending time with them too, so it was a really fun weekend. We stayed from Saturday til Tuesday and had a blast. Avery loves playing with her cousins, and Claire especially loves her too, so I love to see them together, it's as sweet as can be!













Avery didn't mind being all bundled up while they were perusing the sites outside...smart girl, it was so so cold that day.


Two Daddies and their girls by the Lincoln memorial. Can you tell it was FREEZING that day?? I actually didn't go. I was going to drive up there and meet them after Brogan's nap, but then it was so cold that staying in the nice warm house sounded like a much better idea. But I'm glad they got to go, and that my Mother got to see some of DC. Jess and I couldn't believe that they were outside the first time I called! We thought they would go straight to one of the museums, but apparently not :D








After spending far too much time outside on a cold day, they decided to go to the natural history museum, and Avery had a BLAST! Apparently her favourite was the elephant and she wanted to go back to see it over and over. I'm sure she hadn't realised how huge they were until then!!




Elephant again. She saw it from many angles :)





Here Gabe is holding the phone up so that Avery can tell me all about the animals. She was shouting "Giraffe Mummy! It's so tall!!" very excitedly. It was fun to listen to :)






Lion. Obviously.







Another giraffe!


















Gabe and Avery, Joe and Claire...in front of a big orangutan.





Gabe being a bear.... rrrrraaaarrrrr











Claire and Joe with some deer!












Avery likes animals :)
























In the evening after everyone got back from DC, my mother and I went to the festival of lights at the Washington DC temple. It was beautiful! We saw a performance by an African American Chorus...I can't remember their name, but they were wonderful! You couldn't help but grin enormously while you watched and listened to them! And there was a room filled with nativity scenes from around the world, which was beautiful. Unfortunately I forgot to take the camera, so these photos are just from my phone. I wish I'd remembered my camera, because this first photo would have turned out beautifully - the little pond was frozen and the Christus statue and all the lights were reflected beautifully in the ice - it was lovely.

Maybe next year we'll be able to take Avery to see it. She would have loved the singing and all the lights, but it had already been a long day for her, so I left her at Joe and Jess's with Gabe so that he could put her to bed.