Monday, September 21, 2009
She lives!!
I am still blogging!
I'm just not doing it here anymore...
I think eventually when I have the time I might merge all of the posts from this blog into my other blog and then maybe delete this one, or maybe not, but in either case, I am now just blogging on my other blog - Andersen Family Journal
It just got to the point where I couldn't decide whether to write about something on this blog or my other one, so I decided that I should only have one blog for my whole little family, instead of one for Avery and one for the rest of us including Avery!
So if you have been waiting around for me to post something here, please follow me over to my other blog! I'd love to hear from you there!
Thanks!
Friday, June 19, 2009
Drama
Thursday, April 16, 2009
You should read this, you'll like it :)
Find the whole article here.
"It really bugged me when I was little because I couldn't run as fast as the other kids or do some of the things that they did," Allen said. "One of the biggest effects of cerebral palsy is balance. When we were little, someone brought in a balance beam that was just an inch off the ground, and it was easy for the other kids, but I had to step on the ground a couple dozen times. I've had to wear glasses my entire life and I've always been picked on a little bit. But I've learned to cope."
Encouraged by her mother and older brother, Ray, Allen began running cross country and track as a seventh-grader at Memorial Middle School. She had to walk part of the course to complete her first cross country race, but she's been hooked on competitive running ever since.
"That sparked my interest to get strong enough to run a whole race, and I've never had to walk another race again," Allen said. "After I got good enough to run the whole race, my goal has always been to get out of last place, and that's something I've clung to my whole running career."
Friday, April 3, 2009
It gets even better!!
So we were working on independent standing and stepping. Lisa was helping her learn how to get up to standing by herself, and then once she was up and balancing she was having her take 2 steps towards me to put some pieces in a puzzle. Avery was doing what she normally does - she balances, then she takes a couple of steps while falling towards me, if you can picture that. So she did that, and then I helped her stand up again and Lisa gave her the puzzle piece and I held up the puzzle. Avery must have though the puzzle was too far away, so without even any prompting, she took two little steps closer to me and then stopped, still standing!!
Without any help!!
My baby took her first completely independent steps!!!!!!
Lisa and I both about cried!
Big achievement
So Avery started hippotherapy again yesterday. It was supposed to start last week but it got canceled because of the cold wind and rain. Yesterday it was just raining, and they have a covered area, so we were still able to go! Avery was so excited! Anyway, Lisa is "testing" all her kids throughout the course of the 10 weeks of hippotherapy so that she can show that it really does help, and what she decided to do with Avery was to test her before and after each session to see how long she could stand up unassisted. So that's what we did when we first got there yesterday. Avery stood up on the mat, and Lisa sat behind her and handed her the pieces for this puzzle which I was holding in front of her.
Of course, we were expecting her to stand up for maybe a minute before she lost her balance. Her record up til then was almost 2 minutes, and that had only happened maybe 2 or 3 times. So Lisa started the stop watch and started handing Avery the puzzle pieces, and I held the puzzle and made sure she wasn't holding onto the puzzle for support. A minute came and went, and she was still standing very steadily. She finished the puzzle. She took out all the pieces one at a time and gave them back to Lisa. She finished the puzzle again. She started taking the pieces out again, and finally lost her balance and fell backwards onto Lisa's lap after
So of course we thought that would completely throw off Lisa's testing, because she'd never even come close to standing alone for that long before, so she wouldn't be able to stand for nearly that long after hippotherapy! But we were wrong! After 30 minutes of riding the horse, we went back to the mat and the puzzle, and this time, Avery stood for...
In case you weren't certain before, my daughter is absolutely amazing.
Wednesday, April 1, 2009
Busy Busy
Another thing I've been debating about for a while, and have finally come to a decision to is this: I am going to stop updating this blog and just use my other blog for new news from now on. The reason for that is this: it's getting more difficult to decide which blog I should post some things to, and so I keep on just not blogging about them at all! I will still be posting to this blog, but it will only be to catch up, since there's a lot of Avery's first 3 years of medical history which I haven't yet blogged about, because I'm a slacker. So I would like to invite all of you to my other blog to keep up with Avery, but please keep an eye on this blog too as I try to fill in all the blanks! And please forgive me if I don't post much for the next little while! We're hoping to close on this house by the end of April (if we get it....I hope!!!), and we'll need to do some work on it before we can move in, so we'll probably be very busy for the next little while!! But I will still try to post!
Monday, March 23, 2009
And the winner is....
Thursday, March 19, 2009
Funniest picture!
Monday, March 16, 2009
Sick sick sick!!
Oh well. This too shall pass :) haha
Avery was supposed to have an appointment with her ophthalmologist (I can only spell it with the help of spell check :D) last week, but because she was so sick I had to reschedule it. That's okay though, because I'm sure it would have been another appointment of "Well, it still hasn't plateaued, so lets just keep on patching 2 to 3 hours every day, and I'll see you back in 3 months." Not that that gets old or anything... I really like her ophthalmologist, but Roanoke really needs to get themselves another pediatric eye doctor (I'm not going to type that word any more today!!!) because the waiting time at his office is always ridiculous. I always try to get the earliest appointment time possible, and I still have to wait. Last time Avery's appointment was at 9:30am, which is still quite early in the morning, but they were already running about 45 minutes late! So we sat in the waiting room for 45 minutes, and then it was another 20 minute wait in the exam room. Sort of ridiculous. But the only time we've taken her for a second opinion for her eyes, we had to drive all the way to Charlottesville which is two hours from here.
Okay now people, I've only had one person enter my giveaway!! What's the deal?? Do I need to add some chocolate to the pot or something?? I'll do it! I'll throw in a bar of hershey's milk chocolate, as well as the gorgeous hand-made doll and the card, and all you have to do to enter is leave a comment on this post. Go on, do it! It'll be completely worth it!
Pssst... If you're like me and cannot even bear the smell of hershey's milk chocolate, let alone the taste, let me know and I'll replace it with a much tastier chocolate :) REAL chocolate!!
Anyway. That's it. Please enter my giveaway! I don't even mind if you live on the other side of the world or anything ;)
Friday, March 13, 2009
My first GIVEAWAY!
The prizes! My mother has kindly agreed to donate two beautiful items from her etsy shop. She makes gorgeous dolls and cards, and is donating one of each, so here they are:
This is one of her "rag dolls", although I think they're rather too beautiful to be called rag dolls! Click here to see more pictures of and information on this gorgeous doll.
The second item is this lovely card which measures about 5x7, and says "Happy Birthday" inside. (Sorry about the quality of the scan - it was inside its little plastic sleeve when I scanned it, so it was a little shiny...)
So here's how it works! Avery will draw the winning name from a hat (or maybe a bowl...!) before she goes to bed on 03/22, so you have until then to enter! You can get your name put in up to eight times if you do all of the following things :)
- For 1 entry: Leave a comment on this post! (you can leave more than one!)
- For 2 more entries: Tell me what this is a picture of, and when it was taken, if you can! (Clue - you'll find the whole picture somewhere in the blog archives.. .!)
- For a whopping 5 entries: Link to ForYouByV's etsy shop on your own blog, either in a post or in your sidebar :) Here is a nice little link for you:
I think this is going to be fun! Feel free to enter as many times as you want, even if you've never commented on my blog before :)
Thursday, March 12, 2009
Silver lining!
Tuesday, March 10, 2009
Stomach flu...
It started on Sunday night when she woke up several times quite unhappy and feeling bad. So I ended up bringing her downstairs to sleep on her little makeshift bed in the tv room, and I set myself up on the couch and turned on a quiet movie for her to relax to. Then she suddenly told me "I need to puke", so I grabbed a plastic tub and she threw up. Probably more than you needed to know, but it's just that that's the first time I think that she's told me she's needed to throw up before she's already vomited all over her pillow, so it was great! Not great that she had to, but great that she told me in time! Anyway, she threw up a couple of times that night. She had a bit of a fever (about 99.8 F)all day on Monday, and spent most of the day like this:
Notice how sad and sorry for herself she looks! She was watching a movie and holding onto her chuck-e-cheese birthday balloons (I had no idea those things lasted so long! Her birthday was almost a month ago!!!), they seemed to comfort her a little :)
She's sleeping downstairs again tonight. I put her in the recliner before bed and gave her some pediasure and told her I was taking Brogan upstairs to get him ready for bed and then I'd come back to get her, and by the time I came back she had fallen asleep! Poor girl's exhausted! So I carried her upstairs and put her in bed where she sadly whined "No, I need to say prayers!!" so I said "Okay, do you want to just say it in bed?" and she said "Okay" and she kept the same whiny tone of voice the whole time she prayed. I couldn't help but smile as she whined,
Dear Heavenly Father, We thank thee for this day, we thank thee for this many blessings, please bless our friends, please bless our school, in the name of Jesus Christ, Amen.I love that she just had to say her prayers even though she was practically asleep and she felt horrible! I love that girl!
She woke up about an hour later just inconsolable though, so I ended up bringing her downstairs. So I'm being very quiet, and I'll be sleeping on the couch again tonight. Hopefully tomorrow she will be feeling better.
Monday, March 9, 2009
Stretches, socks and treadmills!
The idea is to stick one leg up straight behind her as high as she can. It's difficult for her to do, and she can't hold it for more than a split second on her own, but she likes pretending to be a dinosaur - I suppose the leg sticking out is her "tail" :)
She can do this reasonably well all on her own, but to get s decent stretch she needs help getting her feet together properly and pulled up close enough to her bottom, but once there she will push her knees down all by herself and then "flap" her legs like a butterfly :)
I'm telling you, I consider it almost miraculous to see her not only putting up with stretches with very little complaint, but also actually enjoying them!!! It's amazing! Of course, I think that stretches done this way may well be not quite so vigorous or maybe effective, but the fact that she's willing to do them is worth the slight loss of intensity. Plus, I think the fact that she's relaxed while doing them goes a long way - when we do them the regular way, her dystonia kicks in straight away which makes it really difficult to even pull her legs into a stretched position.
Here is Avery a couple of weeks ago on the treadmill at physical therapy with the wonderful Lisa. She's been doing this for a while, walking with the treadmill on its lowest setting. She actually quite likes it! But Lisa was even able to let go for a couple of seconds last week! Of course, the second Avery noticed she wasn't touching her, she about fell over and Lisa had to hold on again, but it was still great!
I had my mother send me some long white school socks for Avery to wear with her braces and theratogs. I was thinking about it because the long socks she had before just weren't good enough, because they started falling down, and even if they didn't they weren't great with her theratogs because they didn't protect her skin from the silicone on the elastic, so she was forever getting sore red marks all over her legs where the webbed silicone touched her. These school socks are PERFECT! They are long enough that they don't leave any exposed skin between the top of her braces and the bottom of her theratogs, they don't slip or fall down, they're thin and airy so they won't make her too hot when the weather gets warmer, AND they make me feel nostalgic :D Bonus!!!
Friday, March 6, 2009
Flashback Friday: First post-shunt MRI
Maybe this is weird, but I actually think this one with all the bones in her little neck, and her little shoulder peeking out is adorable!! I know, I know, how can an MRI image be adorable...but I'm her mother okay?! I'm allowed to think that!
Neurosurgeon appointment
While we were waiting for the doctor to come in, Avery found on of those reflex hammer things (no idea what they're called) on the table next to her, so she decided she needed to "measure" her legs! So she tapped each knee twice, just like the doctor does it, and said "Okay, good!", so she was obviously pleased with what she discovered :) She also then did her feet and her hands, as well as each of the fingers on her left hand :) Ha! (camera phone, sorry!)
So obviously, this was just a check up, so there really isn't much new to report, but I did get a couple of things I've been wanting to get because I lost it, namely, her head circumference chart and a picture from her last MRI. I still have the films from the MRI she had when she was 2 months old, but they changed the system for the one she had last year so that it was all done on the computer, so I only had one single printed picture from that one, and it got lost. :( But here they are!
This first one was done on 04/19/2006, when Avery was 2 months and 5 days old - 2 months and 3 days since her shunt surgery. The light gray area is the CSF in her ventricles, and the darker stuff around it is her brain tissue. I tell you, every time I look at these pictures I am amazed all over again at the miracle that is my daughter. The black dent on the side is distortion caused by her magnetic shunt valve.
Here is what her brain looked like 2 years later! This was done on 02/28/2008 when Avery (and her shunt!) was just over 2 years old. Pretty amazing, right?? In this one her ventricles are black and her brain tissue gray, and you can see the amazing difference in how much the ventricles have shrunk and how much the brain has expanded!
As for her head circumference, you can see from the chart (you might need to click on it to see it properly) that her head size is well within normal range now, which is wonderful! She's gone from more than 5cm above the 97th percentile at birth (43.5cm) to below 90th percentile today at 36 months (50cm) Hooray for Avery!
All in all, it was a good appointment, and Dr Simonds was pleased with how much she's grown and how well she's doing. They had a very fun little conversation :) He did recommend we see a pediatric developmental doctor too, so they made that appointment for us before we left. The earliest available date is...AUGUST 21st!!! More than 5 months away! She's the only one in the area.
Tuesday, March 3, 2009
Options
Anyway. The reason I've been thinking about this recently is that Avery isn't currently seeing a neurologist. We're seeing her neurosurgeon on Thursday of this week, which I'm sort of excited about because we haven't seen him for almost a year, which is the longest we've ever gone! But Avery used to see a developmental neurologist until he moved to Idaho, and then we started seeing Dr Brown instead who is a wonderful physical medicine doctor. We love him, but I worry that we should be seeing someone else as well as him...I don't know. I was asking Lisa (PT) about what she thought, since she deals with other kids like Avery and knows what sorts of doctors they all see, etc. We were talking a little about the orthopedic doctor we took Avery to almost 2 years ago - he was actually the doctor who officially diagnosed Avery with cerebral palsy. We got her original prescription for her walker from him, but he wouldn't write a prescription for AFOs for her because he didn't believe that braces actually helped. I'm not sure what he would have had us do instead. Lisa was saying that there is now another pediatric orthopedist in town, but that she's pretty sure that he would never prescribe AFOs either. She was saying that she's also quite certain that if we took Avery to an orthopedic surgeon right now, they would recommend some kind of surgery, such as tendon lengthening. She says that as a physical therapist she has mixed feeling about tendon lengthening. *sigh* why can't everything be black and white?? I want to do what is best for my little girl, but how am I supposed to know that what I'm doing is what's best, and not just what one person thinks might be best?
Anyway. Sorry - a rambling sort of post, I'm just in a little bit of a quiet panic because I worry that I'm not doing everything Avery needs me to do.
I do remember that back before Avery got botox in her adductors back in November 2007, Dr Brown seemed to think that she would learn to walk independently during the several months of the botox's effectiveness, and that once that happened she would be using those muscles so well that she wouldn't need to get botox again. Obviously that didn't happen, and her poor little muscles just keep on getting tighter and her tone keeps on getting worse, even though she's working harder and harder, so of course I worry about her. She's having to fight against her body more and more as time goes by, but shouldn't it surely be getting easier?! One of the evidences of this is the fact that her constipation has been getting progressively worse and harder to manage. It's directly related to the muscle tone and tightness of her legs and the other muscles that are affected by her CP, because of course this kind of constipation (neurogenic constipation - I only recently learnt the name for it!) is a reslut of the intestinal muscles behaving in the same way as other muscles affected by CP. We used to be able to control it with an abundance of prunes/flaxseed/apple juice/water in her diet, but it's been getting worse and worse and we have to give her miralax now. I hate having to medicate her in any way, but we just can't control the problem without it anymore. Dr Brown prescribed colace, but have you ever tasted that stuff?? It's foul, and Avery screamed every time I tried to give it to her, and half of it dribbled out of her mouth in her distress, and even after all that she still wasn't going any more often, and even when she did there was still blood every time I wiped. I feel so bad for her. *sigh* What to do?
Sunday, February 22, 2009
It's a shame...
Monday, February 16, 2009
Avery's birthday
Well, I am now the proud mother of a 3 year old!! We had the best day, Avery was so happy! I love her so much :) There are pictures on my other blog here.
During the past week or so I've obviously been reflecting a lot on Avery's birth and early days. She is such a miracle. I feel so incredibly blessed and privileged to have her in my life. I think that is something nobody but a parent of a special needs child can understand - the joy they bring. The rest of the world seems to assume that it's only hardship to care for a child with extra needs, but what they can't really know is that the joy they bring is a kind of joy that no other child could bring. No doubt about it, I love my son just as much as I love my daughter, but there's something about the fact that Avery's life itself is a miracle that just...I don't know, I don't have the words for how I feel. She is just so amazing. I am so unspeakably grateful to my Heavenly Father for trusting me enough to send her to me, and for loving me enough to bless my life with hers.
Friday, February 13, 2009
Flash back Friday: Shunt surgery
Avery's surgery was scheduled for the morning of February 16th, when she was not quite 48 hours old. It was scary. I found that I had to not think about all the risks and dangers, because I would probably have lost my mind!
A year or so ago I wrote an article for Helium about preparing for Avery's surgery, so I'll just paste that in here and then post some photos too.
Babies are amazing.
My little girl underwent surgery when she was two days old. When I was 35 weeks pregnant with her she was diagnosed with congenital Hydrocephalus, with Dandy Walker variant, which meant fluid was unable to drain from the ventricles in her brain the way it should. So after planning for a natural birth, my baby had to be delivered by c-section, and then be prepared for a surgery which involved being put under general anesthetic, having a hole drilled into her skull through which a tube would be inserted through brain tissue until it reached her fluid-filled ventricles, and then having a tube pushed under her skin, down her neck, over her chest and into her abdomen, to drain the fluid. There is nothing minor about that kind of surgery, especially when it's to be performed on your own tiny newborn child. Yes, I was terrified by the risks that the surgery itself presented, but I knew that without it my little girl would have no chance at life.
As a parent of a baby who needs surgery, there is nothing easy about your new, terrifying situation. You are cruelly launched headfirst into one of those experiences you hear about, but never imagine for a moment that you'll experience first hand. In our case, we found out our daughter would need surgery two weeks before she was born. Honestly, in a lot of ways the hardest part was waiting for her to be born, because we knew she needed help and she couldn't get it until she was born. I felt so desperately helpless. In the ultrasounds, I could see how her sweet little enlarged head was under so much pressure that her brain tissue was squashed against her skull, and I couldn't help but think that she must be in pain. I felt so much relief when my water unexpectedly broke, because I knew it meant that my baby would be born that day, and that she would finally be able to get the help she so desperately needed.
My daughter was officially diagnosed with hydrocephalus on February 6th, she was born on February 14th, and had surgery on the 16th, but to this day I find it hard to believe that it was only ten days of waiting! It truly was the longest ten days of my life. Every second seemed to last forever, because I knew that every second presented an even higher risk of irreversible damage - a higher risk that my little girl would never be given the chance to lead a normal life.
How did I deal with the situation thrust upon me? I have always been a religious person, but I can honestly say that I probably spent more time praying in those ten long days than I'd ever prayed before. My husband and I leaned on each other for support - some days he'd be the strong one, and other days I would be stronger. I studied and researched and absorbed every piece of information I could lay my eyes on about hydrocephalus and the surgery she would be receiving. After my daughter was finally born, there was relief and hope, even though her future was still uncertain. She was here, and something could finally be done. I spent every moment possible sitting next to her in the NICU in my wheelchair, in awe of her beauty and the sweet sweet spirit that she already possessed. I sat there touching her, stroking her soft, sweet skin, breathing her in, and feeling pain and sorrow for every heel prick, every IV, and every monitor hooked up to her. The day of her surgery we went with her for as far as they would let us, reluctantly kissed her goodbye, and went back upstairs where we tried not to watch the clock as we waited and prayed and hoped, and tried to occupy and distract ourselves. Finally we got word that she was out of surgery, and all had gone well. We were able to go see her back up in the NICU where she was sleeping, but still able to breathe on her own. She coped so well with the surgery, and recovered so quickly that it was only eight days later that we were finally able to bring our baby home.
I am so filled with gratitude when I think that even 50 years ago my daughter may not have even survived, let alone grown to be the sweet, happy, bright little 18 month old that she is today.
Gabe giving her one last kiss before they took her down to surgery. We went with her as far as they would let us go, and then came the waiting which seemed eternal!
Here she is sedated after surgery. Notice that her gauze dressings are heart-shaped :) She was born on valentine's day, so they gave her valentine's dressing :) I thought that was cute.
This big shunt and incision looked so scary and huge at the time. It is so amazing how well babies cope with surgery. On of the other scary things was that because she had to lie on the same side of her head for so long after she had her shunt placed, and because so much fluid was draining from her head, she got a dent on the other side of her head that was almost an inch deep. It did finally even out, but we did ask her nurses and dictirs about it because it was so worrying to see and feel.
Wednesday, February 11, 2009
Walking at the store
Of course, we get a lot more comments and looks now that Avery's walking whenever we go to a store. Most of it is lovely! It's interesting to see how different people react to her. I love when random people seem to be amazed by her. In the parking lot at walmart, for example, one woman stopped in her tracks to exclaim "You are so amazing!! Look at you!!" which I thought was sweet. Sometimes people will stop and tell us how they or someone they know used to have braces or a walker just like hers. Some people will make a comment about how pretty her hair is, or what pretty eyes she has, or something like that, which, again, I love, because of course she's beautiful! Sometimes though people don't really know what to say or do. We were at Kroger the other day, and there was a little boy there with his mother, and the first time we crossed paths the little boy asked his mother if Avery had hurt herself and that was why she needed a walker. I don't have a problem with questions like these, especially from children, but his mother ignored him. I gave her the benefit of the doubt and thought that maybe she hadn't heard him, but we crossed paths two or three more times, and each time the little boy asked her why Avery needed a walker, and each time he was completely ignored.
How would you react to something like that? On one hand, I can understand her hesitancy to say anything in case she offended us. I still remember when I was about 15 I was on a bus and there was a little boy on the bus with his mother, and to this day I still don't know what his medical condition was, but he obviously had something. I didn't stare at him, but I did steal a few glances wondering what had caused the noticable deformity, and I remember feeling so sad because I just worried so much that he'd had to deal with the cruelty of children. Now I look back and feel sad for his mother, because she probably had to deal with those curious glances everyday, having everybody notice what was "wrong" with her son without seeing what was wonderful about him. But I think it's a tough thing to deal with to, because what should people say? I know that for me, I would have liked it if that mother at the store would have talked to me when her son asked her about Avery, or done anything other than ignore the question. It is not offensive to me if someone asks me about her. I will happily take any opportunity to brag about her, so please, just ask me! Maybe she was embarassed by her son's question, but ignoring my child and pretending she's not there is hurtful, and certainly not the way to teach your child to be embracing and inclusive. I only hope that she maybe spoke to him about Avery later on when they got home and talked about why some people need help walking.
I don't know. I keep on trying to imagine what I would have done had the situation been reversed. It's hard to know because my experience with Avery makes it easier to react to other exceptional children, but I suppose it would be difficult to know if you'd never had any personal experience with one of these amazing children. What comments and reactions have been particularly irksome/hurtful to you?
Tuesday, February 10, 2009
Today
So here are some pictures of Avery trying to stand up with her crutches all by herself.
Avery's PT's name is Lisa, and we just love her so much! She's been working with Avery since she was about 5 or 6 months old, back when she was getting PT through Early Intervention, and then when Lisa left to work for Carilion, we followed her there because we just loved her so much! She does such a fantastic job of pushing Avery and getting so much great work out of her, and yet Avery just adores her, so it's absolutely perfect! For a while after Lisa moved to Carilion, we were getting PT through carilion as well as CRD (early intervention), and the "replacement" PT assigned to us through CRD just didn't have "it", whatever "it" is, and the weekly PT sessions with her were not happy times for Avery. She just cried and cried, and got angry, and the PT was pushing her and trying to make her work, but because she was so unhappy she didn't get nearly as much done, and it left me wanting to slap the PT. So we weren't sad to leave her behind. And it made us even more grateful for Lisa, who knows how to make Avery work hard while still keeping her happy. It makes physical therapy not only happier but also so much more productive.
In the pictures you can see she's wearing her theratogs over the top of her jeans. We just do that for PT - when she goes to school I put them on underneath her clothes. They go on first, even before her underwear - that way she can still use the potty without having to take them off.
We've been worrying about her recently. She has been making so much progress, and I am constantly amazed by her, but I just worry about her developing hips and joints because while she is always progressing in what she's able to do, her muscle tightness and range of motion is getting progressively worse. That can't be good. Every time we've seen her physiatrist over the past year, she's been walking better and better, but having to work harder and harder for it. We've been wondering whether we should just talk to her doctor again about going back onto valium or something at a higher dose, even though it affected her sweet disposition, so that she can get mobile on her feet once and for all before this muscle tightness does more damage to her poor little hips. We already know that her posture and gait will probably never be quite "normal", but I worry that there may be more that we could be doing to prevent further damage. *sigh* Wouldn't it be nice if we could see into the future just enough to know whether all the choices we're making are the absolute best?
Thursday, January 22, 2009
The Walking Game
Here's how you play:
Wednesday, January 21, 2009
Walking with crutches
This was Avery at the end of November. As you can see, she still needed lots of hands-on help to use her crutches.
Monday, January 19, 2009
Good, Better and Best
- 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 :DAvery 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
Blog browsing
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
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!
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. :)