Saturday, January 31, 2009
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 :)
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.
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
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!
Here's how you play:
Wednesday, January 21, 2009
This was Avery at the end of November. As you can see, she still needed lots of hands-on help to use her crutches.
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 :)
Monday, January 19, 2009
- 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....
Tuesday, January 13, 2009
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
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.
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.
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
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