Andersen Family Blog

Growing up and up!

2012-01-26T11:39:00.001-05:00

Today I measured my children against the door frame in Oliver’s room. I love seeing how much they’ve grown! It’s easy not to see the little changes when they happen day by day, only noticing the change when you realise their pants or sleeves are too short. The nice thing about keeping a visual record like this is that we can look at it together and realise “Hey, Avery’s grown 2.5 inches in the past 10 months! Brogan’s grown 3 whole inches! And Oliver’s grown 3 inches in only 4 months!” Avery and Brogan find it pretty exciting to see the difference, saying, “I’m almost tall like a grown up!!!” I find it just as exciting! All of a sudden, the little changes add up and you realise how big those changes really are! My babies are growing up and up, and they’re doing it at a frighteningly fast pace!

Back in July 2011, we made a video of Avery’s motor skills (see below), with motions specified by Dr Park’s SDR crew (back when we were considering SDR for Avery… I hope we don’t have to consider it again!). It was a very interesting exercise! There were things that actually surprised us about Avery’s physical abilities. We live and work with her day in and day out, so you’d think that we would be completely aware of what she could and couldn’t do! But doing this video helped us see some areas where she was stronger than we realised, and other areas which were more challenging for her than we thought. We tried to make another one of these videos a few weeks after Avery’s SPML surgery, but she was still in casts, and still in pain, so it wasn’t a fair or accurate measure. But sometime in the next few days, we will be making another one of these videos. I am excited to do it. I am excited to see the changes, and I know there will be big changes! We will add a couple more motions (like going up and down stairs, which is not an easy thing for her yet) so that when we make another video in a few months, we will be able to see her progress.

Keeping a visual record like this will be a positive experience, in part for the same reasons as marking growth on the door frame. We might not notice the changes as they happen day by day, but when we look back, we will be able to see how much really has changed. Avery may face days when she feels discouraged by her physical limitations, and she may think things are never going to get better. I think that having a video record like this will be a healthy thing for her, because she will be able to look back and realise how far she has really come.

July 2011

Watch this space for the new video…!

Recent Pictures

2012-01-22T21:48:00.000-05:00

My handsome boy.... He does love cookies....!

Most nights I have to cook dinner with Oliver attached to my legs like this... Wheeeee!!

Brogan had his first professional hair cut a couple of days after Christmas. I've always done it myself, but didn't want to face the screaming and torture that day!! Once we were there, it took quite a bit of coaxing to get him in the chair. Avery tried to get him excited by pointing out all the animals on his cover-up :)

In the end, he quite enjoyed the whole experience! And he loved having his hair spiked at the end, and then he even got a lollipop, so he was a very happy boy :)

Avery got to stay up late one night to play her new Quirkle game with me :) Brogan wrapped up in his and Oliver's amazing knitted blankets from Grandma!

The many faces of Avery....!!

Avery and Brogan have been lucky enough to spend some fun time with their friends Paisley and Daisy recently. Lots of love :)

Smiles from my blondie :)

Zoo and Star Day

2012-01-21T21:30:00.001-05:00

Santa brought us a family membership to our local zoo, so we took our first trip of the year on Friday! It was a bit of a chilly day, but we wrapped up warm and didn’t get cold. Oliver was very excited about all the animals this time – he’s big enough to enjoy it all now. Avery started out with her walker, and did quite a bit of walking before her legs got tired. The zoo is mostly accessible, but there are some pretty steep slopes which wouldn’t be wheelchair or walker accessible without help.

A lot of the animals are more active at this time of year, with the cooler weather, so we enjoyed watching them run around a bit. Brogan came running to tell us he’d found some porcupines, which was fun because I didn’t know that he knew what they were called!

It was time for the zoo to close, so we hoped in the van and took the short drive over to the Star. It was too early for it to be lit up, but we still had fun, and the kiddos didn’t want to leave

Daddy kept on having to keep Ollie from running down the mountain! That picture makes me laugh. Avery said she was not going to come home with us, she was going to stay right where she was. So we started walking back to the van. Brogan, who had been pushing Avery’s walker, noticed that she wasn’t coming, so he ran over and put her walker in front of her. “Here you go, Avery” he said, and she told him that she didn’t need it because she wasn’t coming. He was quite concerned

Big Kids

2012-01-01T23:04:00.001-05:00

Today at church Brogan graduated from Nursery and moved up into Primary with the Big Kids Here he is enjoying an after-church snack, wearing his lucky sweater, apparently. We didn’t know it was his lucky sweater until this morning, and I have no idea where he got the idea

He was excited about being with Avery and all the big boys and girls, and happily went and sat in the seat Avery led him to! He sat there quietly for a minute or two while people were still filing in, and then he turned around and, with one of his classic, exaggerated facial expressions, said “But I need a toy..!” But he had a good time, and was excited when we picked him up at the end of church.

Avery was at least as excited as Brogan about his move to Primary! As they were sitting and waiting for it to start, Avery was introducing him to all her friends, “Hey, this is Brogan, and he’s 3, so he’s a big boy now, and he’s coming to Primary now!” No matter that most of them already knew him

Oliver does not move up into Nursery until March, when he turns 18 months old, so for now, he still spends all 3 hours of church with Gabe and/or me. And that is just the way he wants it to be. Forever, probably I did warn the Nursery workers today that when Oliver starts coming, he will more than make up for Brogan’s complete lack of separation anxiety!!

Oliver 2011

2011-12-31T23:59:00.000-05:00

Ah Oliver! My sweet, peaceful, sleep-loving baby is gone, and has grown into an active, affectionate, forever-teething Mommy’s boy!

He is still our little blondie – the hair on the top of his head is about 2.5-3 inches long now, but it’s so fair and so fine that he still looks mostly bald He still has the one little patch of thicker, darker hair on the back of his head which is funny!

The biggest challenge we have faced with Oliver this year has been the teething saga. Every child has different teething experiences and, for Oliver, it’s been pretty torturous. In August I first noticed the purple bruises where four molars were starting to push through. Now here we are, at the end of December, and not a single one of those molars is fully erupted. One of them has three spikes out. He has been teething non-stop for over 5 months. For the same 4 teeth. It’s been a good time for us all!!! Yikes! So my sweet, sleep-loving baby has become my cranky toddler who wakes up 2 or 3 times a night, often more. I have a feeling that this will continue until he has a full set of teeth…. maybe by the time he gets his 2-year molars, we’ll all be able to start enjoying a full night’s sleep again… But he is still a good napper. He takes one 2.5 hour nap during the day – he usually goes down sometime between 10 and 11am, but can make it later than that if he needs to.

Oliver started walking in little spurts several weeks before his birthday. He chose the week that Avery was in Texas for her leg surgery to start walking across rooms and taking 20 or so steps at a time. Since then he has loved being on his feet. In October or November he started spinning around just to make himself dizzy, which was endlessly amusing to watch! He kept on doing it, even though he would often cry when he fell down at the end! He still does it sometimes He also likes dancing (super cute) and racing. Of our three children, Oliver has had the clearest first word. His first word was “Go!” The first day he said it, he was watching Avery and Brogan racing from the front room to the kitchen and back again. He was sitting with me on the stairs as we watched them race, and every time they stopped, he bounced up and said, “Go! Go!” After that he started saying it right before he ran anywhere too He also says Yay, Mom (maaam), Dad (Da, or day), and there are several other sounds he makes which may or may not be specific to something, but other than that he still mostly communicates his needs with pointing, screeching, and/or whining!!! He has perfected the art of ear-piercing screeches. Ouch! He also has the cutest laugh, and his squeal of delight when he runs to greet Daddy when he walks through the door is the sweetest thing

Oliver does definitely understand a lot more than he says. He knows what “No” means, and will also sit down when he’s told. He also will clap, kiss, and jump on demand, and will hide if you ask “Where’s Oliver?” It’s actually very cute, because he’ll put his hands up to hide his face, but he mostly just covers his mouth and nose, so you can still see his smiling eyes peeking out over the top Then he’ll pull his hands away and laugh and laugh when you say “There he is!!” He’ll go sit on the step when you ask him to, and will try to help putting on his socks, by lifting up his foot and pushing the rolled up socks against it. He doesn’t seem to understand why this method doesn’t work. I don’t know why I try to put his socks and shoes on him before we leave the house anyway, because the first thing he does once he’s in his carseat is take off his shoes and socks! He has started doing the rolling and beeping motions by himself when I sing The wheels on the bus. He has also started to do funny little things just for the sake of being funny!

Without a doubt, Oliver loves his mommy!!! It is very sweet, but often makes it difficult for me to cook, clean, walk, or look after my other children! There’s nothing like trying to prepare a meal with a screaming child attached to my legs…! In his ideal world, I would not do anything but hold him and love him, 24 hours a day Daddy says that he is not like that when I’m not home, and he definitely enjoys calm one-on-one time with both his parents. When he realised that I would pick up and/or hug Avery and Brogan whenever they got hurt, he started screaming and running for me whenever one of his siblings got upset. It was like, “Noooooo! You can’t have her! She’s mine!!” He definitely gets jealous whenever I show affection to my other children, but I think he’s starting to calm down a little bit with that. Whenever we go to the YMCA, Oliver screams as if his heart is breaking when I leave him in the child-watch. A lot of toddlers do that, I suppose, but Oliver takes it a step further by screaming for the entire time I am gone. Every time I have left him there in the past 6+ months, someone has had to come find me and ask me to come get him because he won’t stop screaming. Yup, he loves his mommy

This year Oliver went through a phase where he thought hitting was hilarious! Luckily, he mostly hit Mommy and not so much his siblings, but it was still not the most fun thing for Mommy! I tried not reacting, but he would just keep on hitting me until I reacted, and then he would burst into a fit a laughter! Thankfully, he doesn’t do that anymore, although he will pick up a stick or a pole, if he sees one, and whack the nearest person with it…!

Oliver loves cars, kisses, cuddles, food, putting things in containers and pouring them out again, baths, splashing, attention, making mess, pulling the kitchen towel of the oven handle and cleaning the floor with it, being tickled, snuggling closer to Mommy when strangers talk to him, trying to keep up with his big brother and sister, making noise, and all sorts of other things. He has changed and grown up so much this year, leaving the baby behind and growing into a sweet, opinionated little boy.

Brogan in 2011

2011-12-31T23:58:00.000-05:00

Brogan is still the most affectionate and loving little boy EVER! If your self esteem is a little low, spend an afternoon with Brogan and you will feel better! It’s hard to feel bad about yourself when you are being smothered with kisses and hugs, and being told every few minutes, “I’m love you sooooo much.”

Brogan still loves the world and everyone in it. He loves to be in the limelight, and sometimes when he needs a little attention he will say, “Wook! Wook at my eyes!” until you look at him and then he’ll say, “Watch this!” and make up some little dance or jump right there on the spot When he sees someone he knows out in public (and sometimes complete strangers too), he’ll go running up to them and say, “Hey! It’s ME!!” , and then try to give them a hug or a kiss.

He looks up to his sister, and a phrase we hear from him a lot is, “Me too!!” If Avery wants something, he wants it too; if Avery wants to do something, he wants to do it too. He is losing patience with her need to correct him all the time though. He still has his own way of saying and doing things, and doesn’t like it when Avery gets bossy with him and tries to tell him he’s doing it wrong.

Brogan knows all of his shapes and colours, and recognises most of the uppercase letters, but he has very little patience for sitting and learning at this point. His version of the alphabet song has changed a few times this year – for a while it went, “A B C D Effigy, H I J J PPP PPP PPP”. Most recently it goes something like this: “A B C D E F G Next time won’t you sing with me” He does like singing quite a few songs these days, but if I start singing a song when he’s not in the mood for it he will say “No! Don’t sing Mom!”

It has been nice that I don’t have to translate for him very often anymore! Most of the time he speaks clearly enough that even strangers can understand him There are still some words for which he has his own unique pronunciation, I will add them here when my brain is working well enough to remember them, which it’s not right now apparently!! The only one I can think of right now is “Switch”, which is how he pronounces “witch”. Oh, also, he calls pajamas “Dramas”. He has to wear Dramas to bed – he won’t wear a daytime shirt or pants, even if they’re comfortable!! “No! That is not a dramas shirt!!” His sentence structure is still sometimes a little funny, but I am happy to say that he has evolved from “Ah Bogin!” to “My name ‘bout Brogan” He often uses “about” instead of “is”!!

I am very happy to say that Brogan finally started sleeping better!!! It was rough for quite a while, but sometime early-ish in the year, he finally started sleeping well enough that he could start sharing a room with Avery They both seem to enjoy the arrangement, but even though Brogan has been sleeping all night for months now (besides a few short phases, like the one he’s going through right now where he wants to climb into bed with us in the middle of the night…), Avery still prays most nights that, “Brogan will stay in bed all night and not shout.” Haha.

Another nice surprise came in the form of potty training! For a long time, I was worried that Brogan was going to be in diapers ‘til he was four, because he just didn’t seem to care whether he was wet or even dirty! Then out of the blue, sometime in February, he got sick with some sort of stomach virus, and apparently that was the motivation he needed to use the potty! I was so surprised and happy! He had a few setbacks along the way, but from about March until August/September he was in underwear 24 hours a day. Then came Avery’s surgery and intensive therapy, and I think that the extra attention Avery was getting made Brogan regress, and he had to start wearing diapers to bed again. But he is still wearing underwear during the day and, as long as he’s wearing stretchy pants, he doesn’t need help using the potty most of the time. I can tell when he’s gone though because he’s naked from the waist down He hasn’t quite mastered the putting on of underwear and pants yet!!

Brogan still hates having his hair washed, but he is much better about brushing his teeth and having his nails cut. He loves the swimming pool these days, and enjoyed the one round of swimming lessons he took in October. Mostly. He liked all of it, except for getting his head and face wet, and was not pleased on the few occasions when he got tricked into putting his head underwater!! So he’s back to spending time in the childwatch while Avery has her swimming lesson, which is an arrangement that makes him happy. He loves the childwatch, especially when there are lots of friends there, and especially when he gets to go down to the Xrcade with the big kids! He has also thoroughly enjoyed his last year in Nursery at church. He just loves to be surrounded by friends, and he has never met a stranger!

Mealtimes are still a struggle. Although he is considerably better than he was, there are still relatively few healthy foods which Brogan will willingly eat. He would still prefer to live on candy, apple juice and ice cream, and doesn’t seem to understand why his parents are so mean as to not let him eat candy all day! We have managed to stop fighting over apple juice – I no longer have to refuse to give him apple juice 20 times a day! He generally has one cup of watered down apple juice in the morning, and that’s it. His water intake is slowly improving. He loves toast, and has even started eating the crusts!

Brogan really is a very sweet boy. When I tell him this, he usually responds with, “And you’re a sweet Mom.” He loves all of us so much, and we just love him to pieces!

Avery’s 2011

2011-12-31T22:44:00.001-05:00

Avery had a really big year this year! At the beginning of the year we were looking at wheelchairs, and by the end of the year, we were watching her walk up to 70 paces! It’s been a very exciting year!

Avery got her first wheelchair in March. It’s hot pink and had light-up casters on the front. (The casters have since been replaced with much more practical 6” tires.) She picked it up right away and was wheeling herself around in no time!

Avery really mastered the tricycle this year. Even in bare feet, she can peddle around very happily for a whole afternoon!

She finished preschool on a high, no longer qualifying for special education!! She was deemed completely independent in the school environment, since she was able to get around by herself in her wheelchair and walker, and she’s never had any cognitive delays So we were proud of her for that.

Avery lost her first tooth in July, and the second came not far behind! Her adult teeth had already come out behind and were waiting to take their places. Her two top middle teeth have been loose for a few months now, but haven’t yet fallen out. We also discovered that her six year molars had already come through when we went to the dentist in the summer!

Academically, Avery and I started her first year of homeschooling in September. One of the deciding factors when we were considering homeschool was the frequency of our therapy trips (Herndon and Sterling for ABM, and, as of November, Charlottesville for Feldenkrais). It has been going well! It has been a challenge for me, and is forcing me to be more organised than I am by nature! But that is a good thing! She is a good learner, and has made great progress with her reading and basic math skills.

Avery is a mostly sweet big sister to her brothers, but she does like to get her own way, and has been earning quite a few Time Outs for pushing and yelling recently…! She also likes to start arguments with Brogan sometimes, even when he’s not disagreeing with her!! She developed quite a liking for the word “No!”, which isn’t our favourite thing, but she is getting a bit better now. She likes sharing a room with Brogan, and is an avid bedtime reader! We read a story with each of them, and then she has a pile of books on the stool next to her bed which she reads through by herself and puts at the end of her bed before she cuddles up with her bunny and goes to sleep. She is a wonderful cheerleader for Brogan and Oliver, and seems genuinely happy and excited when either of them achieves something new. She loves to make cards for her friends, and she loves drawing and writing. She has a good appetite these days, and mealtimes are rarely a battle with her, which is lovely for us! She will try new foods, and likes a good variety of things – she will even eat salad these days! She still only likes water, apple juice, milk, or chocolate milk to drink though, and that’s just fine with us She won’t touch soda – hates the stuff!

We started contemplating surgery options early in the year, and by the summer we had decided to give SPML a try. With the help of many wonderful people. we were able to raise the funds for her surgery and the following months of therapy, and on August 26th, Avery underwent her first elective surgery, in the hopes of giving her the chance to walk independently and healthily. She was a complete superstar during the whole thing. She was so excited to try out her “new legs” after her surgery, that she tried to stand up and walk as soon as we got back after her surgery, when I ran out to the store to get her prescriptions for the pain! So, of course, it hurt. And the next few times she tried in that first couple of days, it hurt. So then she was afraid to try for some time after that. She had some residual pain in a couple of spots for a couple of months afterwards, which we were not expecting, and which is not the usual after SPML. After the initial improvement in her posture, movement in her feet, and separation of her legs, progress seemed slow for a little while. We went to therapy religiously and progress was being made, but then, all of a sudden, on the 5th of December, Avery seemed to make up her mind and decide she was ready. She walked all day! She walked, and fell down, picked herself up and walked, fell down again, and just kept going! It was so exciting to watch!! (You can watch a video of her walking that first day HERE!)

The progress has continued since then! Currently, her wheelchair is sitting, locked up, in the carport, because it has been weeks since

we took it out of the back of the van! She has been using her walker everywhere, and has been walking independently (with her SAFOs on) in all sorts of places On Christmas Day, during our church service, Avery started walking around in the hall, and at one point, she took SEVENTY unassisted, independent steps! Not just in a straight line either! It was amazing to watch. And the best part is how much she loves it We are a very happy family, and she is a very happy girl!!

Avery has also claimed a lot more independence in other areas these past few weeks too! Since she became so motivated to walk, she has also started walking around a lot at home. She likes to hold onto the wall and walk from the bathroom to her bedroom at bedtime, turning off lights along the way, just because she can! She also likes to walk to her dresser and open the drawers, selecting her own outfits, and dressing herself- all new developments!

Christmas Day 2011

2011-12-27T23:25:00.000-05:00

We woke up to the sound of an excited Avery crawling out of her room whispering, “It’s here! It’s finally Christmas! Come on! Lets go see the snow!” She was so focused on seeing the unfortunately non-existent snow, that she only noticed all the presents after I told her to look at the tree!

Opening stockings.

Ready for church :)

Avery and I tried out a new hairstyle for church, which is why her hair was in rags for the Christmas Eve pictures :) I think it turned out super pretty, but the pictures don't do it justice! (I found it here)

After church, more present opening!! Hooray! Angry birds :)

Presents from Aunt Evey and Uncle Naeem :) (Oliver looks so grown up!!!!)

Colour mixing goggles. Unicorn hairclip holder.

I got some video of them opening the marble race from Grandma. All three of them LOVE it!

We had our friends over for Christmas dinner (they brought half the food!) I didn't get any good pictures, but I thought this one was exceptional in it's awfulness!

Christmas Eve 2011

2011-12-26T21:57:00.000-05:00

I have always loved Christmas. Always. Christmas when I was growing up was always magical – something I looked forward to all year. Since having children, I have found that, as much as I loved Christmas as a child, it is even better when I get to be the Mom

Avery and Brogan both got excited about Christmas this year, which was super fun! I’ll have to write a post about some of the stuff we did to prepare for Christmas, but this is just going to be about Christmas Eve.

The three boys got matching pajama pants this year for their Christmas Eve presents. Brogan picked out the fabric a few weeks ago I was very happy when Avery opened hers and exclaimed that it was like the spotty pajama dress that the girl monkey wears in her 5 Little Monkeys book! I was going to make her PJ pants too, but then last week we were reading that book she was wishing that she had a pretty spotty nightdress too, which was perfect because the fabric remnant I had got for her gift happened to be spotty! I hadn’t planned on making her a dress since they are so hard to crawl around in, but recently she’s been on her feet so much more that a dress is more practical than it once was

When I suggested in the week before Christmas that I thought Avery and Brogan might be old enough to act out the story of the Nativity, I said “Maybe Avery could be Mary or an angel, and maybe Brogan could be Joseph, or a shepherd…” Brogan responded, “No. I don’t want to be a shepherd. Maybe I can be a ghost with too many EYES!” But we did act out the Nativity, as I read the story from the New testament, and it was great. Don’t they look cute as a shepherd and Mary? The attention of my sweet 3 year old isn’t exactly the best, but Avery and Daddy at least got to the end of the story

Then it was time to leave cookies and milk for Santa! After that we sang Jingle Bells to bed, and they went straight to sleep

This is what our front room looked like after Santa had been

Merry Christmas

2011-12-23T22:51:00.001-05:00

I don’t know about you, but we are all pretty excited about Christmas in our house I love being a mom, especially at Christmas time!!

I do not know why I have been absent from blogger for over 2 months… I’m sorry! I haven’t even been logging in, so, besides the people I’m friends with on facebook, I haven’t even been reading any blogs, so I have a lot of catching up to do!!!! I have every intention of being a regular blogger again now though But for now, here are a couple of pictures of Avery and Brogan with Santa!

The Cat in the Hat

2011-10-29T22:22:00.000-04:00

(Yes, I know this is late, but I had to do it anyway, because I was so proud of my handiwork!!)

Months and months before halloween, Avery, Brogan and I had discussed their costumes and had decided on a Cat in the Hat theme! I had a lot of fun figuring out how to turn Gabe and the children into the Cat, Thing 1, Thing 2, and Fish. I was really pleased with how they turned out, I just wish I’d been able to get a couple of better pictures!! (These were taken at the Trunk n Treat at church.)

Excited to go trick or treating!! (I didn’t get any good pictures of Oliver as Fish… isn’t that sad??!)

Thing 1 and Thing 2!!

I made the costumes out of red fleece, with a zipper in the back, and padding in the neck. I got red mittens from the dollar store, which I was going to attach to the sleeves with red ribbon, but ran out of time! The wording I made by printing onto iron-on transfers, which I ironed onto white felt, and then ironed onto the fleece. The wigs were the most time-consuming part, but I love them! I used 1/2” elastic and grosgrain ribbon to make a base, and then tied on strips of blue tulle until they were nice and fluffy

My 6’4” husband wore a 20” tall hat, and then added to his height even more by roller blading around the parking lot! I may have made his tail a little too long, since it still dragged on the ground even when he was in roller blades…! Oh well. I think he looked just like the Cat in the Hat, although I should have taken a moment to plan out his make up before I did it…

The trunk of our van, when I sat and handed out candy. Notice the ghost hanging on the right – Avery and Brogan and I made that one out of paper mache and rags. It had a face too, but it must have turned around just before I took this picture.

Before the trick or treating, there were activities and games inside. One of the activities was wheelchair racing…. :)

Walking Machine

2011-10-13T08:03:00.000-04:00

I am finally sitting down to write a quick update about our sweet Oliver!! He has been growing and developing so fast, and I feel bad about how little of his first year has been properly documented on our blog. He is already one!! His birthday was over a month ago!! I think time speeds up with each child.
Oliver had been working on walking for quite a while before his birthday! While Avery and I were in Texas for her surgery, Oliver started walking across rooms, and these days he spends more time walking than crawling! He loves being on his feet, and sometimes walks around clapping and squealing with excitement over the fact that he's walking! He still hasn't quite figured out what to do with his arms, which is pretty entertaining!! Sometimes he swings them back and front together as he walks, and sometimes they hang stiffly at his sides! But anyway, here's a little video showing how he's been getting more and more steady on his feet these past few weeks :)

Swimming

2011-10-11T13:21:00.000-04:00

Yesterday, Avery and Brogan both started swimming lessons! It was Brogan's very first time, now that he's 3 and old enough for classes. I thought it would be good for him because he still hates getting his face wet, and a little more confidence in the water will definitely be a good thing! It is Avery's first time since her SPML surgery, so I was interested to see how her movements in the water might be different. And of course, I was really looking forward to her benefiting from the therapeutic effects of the water again! So they will both be having lessons every Monday and Wednesday this month, with Mr Keith, who is wonderful :) And, an unexpected joy, there was only one other child signed up for classes in that time slot, so they combined the class, which means that Avery and Brogan get to swim together! On top of that, there was nobody else in the whole pool!! It was really nice!

Overdue

2011-10-06T01:01:00.003-04:00

I have to confess that my blog has been a victim of my severe "burned out" status of late. I realise that it is terrible timing, because I know a lot of people having been watching for news of Avery and her post-op progress, but I have been exhausted!!! Every time I have sat down to update the blog, I have been too drained to actually do it. Even tonight, there are two videos I want to add to this post, but I know I won't muster up the will power to get up off the couch to turn on the computer and upload the videos. So you'll just have to come back for those in a few days ;)
Here's the good news though - Avery is doing well! And here are a whole bunch of pictures and (later) videos to prove it!! (Except these first two...)

There was a moment or two during Avery's early recovery when she felt rather discouraged. It didn't last long. Before Avery had her surgery, we spent a lot of time preparing her for what was going to happen the day of the surgery, and why she was going to have it done. I also had to spend some time trying to quell her excitement, because she pretty much thought she was going to wake up and walk out of the recovery room. Apparently, I didn't do a good enough job of that. I think I already mentioned Avery's eagerness to try out her legs pretty much as soon as her general anesthesia wore off. I had run out to get her pain medication prescriptions filled, and she told Aunt Colleen that she wanted to try to walk. So Colleen helped her stand up, and she took one step, and of course, it hurt. She tried a few more times in the next day or two, and every time she did, she was in pain. So then she was afraid to try for quite a while. And then, after we got home, we were back in her safest, most comfortable environment, but it wasn't comfortable. She was still hurting, and on top of that, she was not only not walking, she was actually less independent than she was. Temporarily, of course, but I don't think she was prepared for that.

There! Now that we have the unhappy part out of the way, we can move onto happier times :)

When we were still in Texas, in one of Gabe's phone conversations with Avery he asked if she would like to have a "Welcome Home Party"! She loved the idea, but repeatedly insisted that it was just to be a family party, no friends! And the cake had to be a chocolate cake with strawberry frosting and vanilla sprinkles!! And we had to play musical chairs!! So on day 8 post-spml, we had a welcome home party :) Daddy went out and bought decorations and flowers :)

My pretty girl :)

"Present time!!" Avery announced, so I rushed downstairs and wrapped up Oliver's birthday present (a block table)... I hope he won't resent us for the rest of our lives!! And then it was cake time!

Day 11 saw us back in northern Virginia for Avery's first week of intensive therapy. By that point, she was mostly pain-free. The only time it really seemed to hurt anymore was when I carried her sitting on my hip. She was still nervous about putting weight on her legs, but she was ready to get to work.

Look at the way she's standing at the sink! Look at her legs! Look at her posture! Isn't it beautiful? :) And look at how my sweet boy tucked the baby doll into bed before he went to sleep :)

And here are my two sick boys. Round one. They both got sick with colds during the first week away, and then again the second week. And then they were both perfectly healthy whenever we were home, in their own bedrooms, with Gabe around!! But really, that, and the fact that I had to miss half of her ABM sessions to keep the boys from being a distraction, were the only things that made the weeks away slightly difficult. My children are all super stars.

Avery strapping her braces on before bed, and working in therapy with Catherine during her second intensive week.

On September 26th it was time for Avery to get her casts cut off!! She was very excited, and was prepared for the noise :)

To celebrate, we went and got Bubblecake :) And then we went home, and Avery played in the bath for about an hour and a half!! She went to bed a very happy girl.

Early tomorrow morning, we are all leaving for 3 days of therapy. Gabe gets to come with us this time too :)

I also want to take a moment to say thank you. I have been amazed by the generosity of so many people. I don't even know how to express my gratitude. Family, close friends, and friends I have never met in person.... Thank you. You are making it possible for Avery to do all of this.

I promise to upload the videos when we get home :)

3.5 Weeks Post-SPML

2011-09-21T21:04:00.001-04:00

This is not a big update. I’m sitting in the dark at a hotel in Sterling right now, being quiet while my children sleep! We are up here for Avery second intensive week of therapy. It is going really well! Here is something she’s been doing recently:

She would never have been able to hold one leg up like this before! Look at that separation! She is definitely doing some things her Daddy can’t do This was during her nightly routine of getting her braces strapped on before going to sleep. I have been pleasantly surprised by how well she has accepted this. She will even remind me to help her put them on if she thinks I’m going to forget! Also notice my sick little boy in the background there. Why is it that he has got sick during both of our therapy weeks so far??! He was all better today, but he was pretty miserable that first night and the next day.

Doing some standing work during therapy with Catherine today.

Bathing with casts....

2011-09-19T22:18:00.000-04:00

As fun as this is, I don't think anyone is going to miss those casts too much...!

6 more days :)

(I wrote a post about the first week of therapy, but it's gone missing....)

Recovery, Day 6

2011-09-02T00:49:00.001-04:00

Avery and I got home from Texas late last night! We had a wonderful trip, and it is wonderful to be home with my boys, and my Gabe :)!! How can two little boys change so much in 8 days?? I have some more pictures and videos to post from the fun part of our trip, but I just wanted to write a quick update about Avery's progress. She is still feeling a fair amount of pain whenever she tries to use her legs, but is pretty comfortable when she's relaxing. I almost wish that I hadn't allowed her to get up onto her feet those first couple of days, because it hurt her a lot, and I think that has made her fearful now. She was so excited to get up and try out her legs, but now it takes a lot of coaxing and encouragement to get her to try to stand up. A big thing I was looking forward to about coming home was that we would have access to her walker again, which I knew would make it easier for her to get herself upright. So today, after lunch and a dose of pain medication, I let her choose a show to watch and helped her stand up in her walker to watch it.

She did a really good job!! I think that she really relied on her arms to take a lot of her weight off her feet, but it was a good, positive experience, and I think it helped her realise that it's not going to hurt forever. You can really see the tension and fear of pain in the way she tensed up all the way down into her toes:

I hope that you noticed that big, beautiful, wide open space between her knees when she was stepping in the video??!! Amazing!!! We are still very excited about the possibilities with this surgery. That includes Avery... Brogan asked her why she couldn't walk like him tonight, and she told him that she will be able to soon. She is excited, and is being (mostly) very brave and pushing herself to work through some of the fear and discomfort. We are excited to get started with therapy next week, and we are all very excited for the pain to go away so that Avery can really start to enjoy the benefits of her surgery!!!

Houston Zoo

2011-08-30T22:00:00.000-04:00

Have I mentioned that I really love CityPass??

Downtown Aquarium

2011-08-30T10:08:00.000-04:00

Here's a selection of photos from our adventures at the Downtown Aquarium in Houston yesterday :) (In chronological order!) We had a blast!

Here's a video :)

Other news for Monday - It was day 3 post-op, so Avery's bandaging came off, which was a little torturous, but I am glad it's done! Also, day 3 was the day she was definitely supposed to be getting up and trying out her legs. Unfortunately, she has become a little afraid of being up on her feet The first 2 days she was super excited to be getting up and trying to walk, because that was what her surgery was for! But every time she tried in those first couple of days, it ended in tears because of the pain, so now she doesn't want to do it anymore. I thought maybe the aquarium would help motivate her. She did stand for about a minute to look at this huge cylindrical tank:

She was nervous, but she stayed like that for about a minute, and it didn't hurt, she said it just ached a bit. So that was a positive experience. She also took a couple of steps from her wheelchair to a bench at one point. I didn't get any pictures of that because both my hands were occupied with helping her, but again, that was a positive experience because it didn't hurt a lot. So I count those two things as progress, and maybe today she will feel braver.

Toe Wiggling

2011-08-27T12:00:00.000-04:00

SPML Recovery, Day 1

2011-08-26T16:56:00.001-04:00

A little over an hour after Avery went to the OR, I was told that she was in recovery and that all had gone smoothly. Dr Yngve came out and told me all about how well it had gone - that her body had responded beautifully to it, and that it was like her body was made for this procedure :) I had to wait a while longer though before I was allowed to go back and see her. By the time I did get back there, she was starting to wake up, and I only have one picture from that time because she was so uncomfortable and so unhappy :(

This was towards the end of her time in recovery when she was beginning to breathe normally at least! She woke up feeling sore and unhappy, and she kept on trying to tell us to take off her braces and casts because they were too tight or hurt, but it took a long time for us to even be able to understand what she was saying because she trying to speak in between hyperventilating! Poor girl.

Once she was able to calm down enough, she wanted to open her present, which was this little baby doll. She was just so sweet. Even though she was still hurting and still wanting to get her casts off (she said they were too tight), she took care of this little baby - feeding her some milk, burping her, giving her a pacifier and wrapping her up in a blanket. Too sweet.

She started begging to "go home", so they let us get ready to leave. Although, I was a little nervous about driving an hour with her the way she had been...! But we helped her get into her wheelchair without too much discomfort, and she continued too look after her baby, although she herself was still so droopy and sleepy!

Feeling a lot happier.

A picture with the team of nurses/technicians/anesthesiologist, etc. They were great, and they loved Avery :)

A little nap on the drive home. It wasn't bad - she seemed to be pretty comfortable, and started acting more like her normal, sunny self :) At one point while we were driving she said, "Isn't it great that I can walk now?" So I had to remind her that it would still take lots of practice, but it was really great because it would be a lot easier for her to learn.

She ate lunch with no issues while I went to pick up her prescriptions (acetaminophen with codeine, and valium for muscle spasms). She didn't mind me leaving, but before I left she asked me if I would say a prayer for her to ask Heavenly Father to help her legs feel better, and that the casts wouldn't hurt her legs. So sweet. Also, while I was gone, she asked Colleen if she could try walking! So she helped her stand up and she tried one shaky little step :)

Playing with new toys on the couch :)

Showing off her hot pink casts, and a little something she couldn't do before surgery!

Waiting

2011-08-26T08:58:00.000-04:00

After lying in bed wide awake until about 1am last night, my alarm went off at 4:35am this morning!! We had to be here at the clinic at 6:15, which meant we had to leave the house at a little after 5am. Avery thought it was pretty cool to wake up while it was still dark! Once we started driving she said, "Hey!! Now I can play on Daddy's old phone, because the sun has gone away, so I can see it!"

Blood pressure.

Getting her bracelets.

They gave her a princess sticker book after she took her medicine. She was a little worried that the medicine might be yucky, but she still drank it after a little reassurance (and a promise from the anesthesiologist that she would get a red popsicle when she wakes up!)

The anesthesiologist checking her heart. She let her listen to her heartbeat and asked her what it sounded like. Avery said it sounded like an elephant stomping :)

Starting to feel a little sleepy, and taking to Daddy and Brogan.

"Tell your Dad I'm writing on your legs," says Dr Yngve.

"Don't write on yourself at home!" he says!

Avery's french-style hat - styled by the anesthesiologist :)

Off she goes! So brave, and still excited!

When her number turns blue, she'll be in recovery! She's the second green one - green means she's in the OR.

Children's Museum and Pre-op

2011-08-25T22:09:00.002-04:00

On Thursday morning before we went for Avery's pre-op appointment, she and I went to the Children's Museum of Houston. We invested in a CityPass so that Avery would have some good memories of this trip too, not just a surgery trip. So we started with the Children's Museum, because I thought it would be best to do the most hands-on visit before surgery, when she would have the energy to get up and do stuff. The museum was amazing! I told Gabe that when he brings her back for her follow-up in 2 months, he should try to make time to take her there again, because we probably didn't even see half of it!! Avery had a blast :)

Funny mirrors

Using pulleys to navigate the board without letting the ball fall through any of the holes. She was actually really good at that :)

Woah...weird!

Another thing she was really good at - she took this thing apart and put it back together with almost no help from me at all!

The only part I had to help with was when she put one of the yellow pieces in upside down :)

Super smart

This one was frustrating!! For me, at least!! We spent way too much time trying to put all the pieces together so that all the bugs had the correct parts!! We almost did it!! Can you spot the one bug that is mismatched??

Driving a car.

"Particle collisions"

Taking a trip to Texas for her surgery... :) "This must be a super safe van, Mom, because there aren't any seat belts, so they must drive it very safely."

Kidtropolis! Very fun and educational idea! Avery of course went straight for the ambulance because she wanted to be just like her Daddy :)

Helping the sick kid.

Driving down the street :)

The we had to leave!! Even though there was still so much to see! But we had a doctor's appointment to get to :)

This is how excited she was to see Dr Yngve.

"Your whole name is Dr David Yngve."

More xrays. This confirmed that her hips are starting to come out of their sockets, but still less than 50% at this point. Dr Yngve says that the surgery will stop them from coming out anymore, but whether or not they get pushed back in will depend on how strong her pelvic muscles are. He wants to see hip xrays every 6 months to monitor them.

It was decided that during the surgery, he will release both her ankles/feet and her hamstrings, and will also do alcohol blocks on both sides. He noted that she has tightness not only in her ankles but also her hamstrings and groin.

As a side note, I have to tell you that Avery has never really been particularly picky about what she wears. Most of the time, she will wear whatever I pick out for her. So it was really funny that of all the days, today was the day that she insisted on wearing a beautiful dress, because she is a beautiful princess, and beautiful princesses only wear shorts and t-shirts when they go to bed, apparently!! So in the video she is wearing borrowed shorts and hospital gown...!

"Is this the very sharp needle Dr Yngve will use to do my surgery?"

Haha!!

Pre-op Pedicure :)

2011-08-25T09:06:00.000-04:00

I had thought for a while that it would be fun to take Avery to get her nails done before her surgery, so that she would have pretty toes when her casts came off Then, one day a couple of weeks ago, Groupon’s offer was a half price mani/pedi, which was perfect timing! So on Tuesday morning, I took Avery to the salon to get some pampering.

She loved it, and on the way home, she asked me if she could go back some time!

PS, We have discovered this past couple of days that even salon pedicures aren’t designed to withstand swimming pools and crawling!! Oh well, I’ll just have to take her back after her casts come off

Journey and arrival

2011-08-23T23:16:00.001-04:00

Playing at the airport before our flight, and showing me how excited she is before takeoff!

In flight entertainment, and trying to rest during our layover.

Pretending to sleep as we begin our descent into Houston, and waiting for the shuttle.

“But Mo-om! I love staying awake all night!! I don’t want to go to sleep!” (At 12:30am, which was actually 1:30am Virginia time!) We made it downstairs for breakfast just in time the next morning! (They stop serving breakfast at 9am) Out of all the yummy options they had, Avery chose Froot Loops…!

Washing the wall during her bath, because, “I am such a great helper, Mom!”. Then taking some time to play some quiet, restful games after being at least 5 hours short on sleep

Leaving a present for the cleaning lady (A paper doll chain she made and decorated at church last week, on the back it says “Jesus wants us to love everyone.” Waiting in the lobby. I asked her if she wanted to go pick out a snack, expecting her to get into her wheelchair and follow me, but when I looked back, she was walking towards me!!

Aunt Colleen making play dough for Avery! Avery loves playdough

The Andersens have been wonderful, letting us stay with them and loaning us a car while we’re here. And all during a very crazy week for them!!

All my bags are (mostly) packed...

2011-08-22T23:27:00.000-04:00

Tomorrow is the day.
Avery and I fly to Houston, leaving my boys in the capable hands of my husband.
Originally, we were all going to drive down together, but I was really concerned that the 20 hours drive would be too much like cruel and unusual punishment for Avery after her surgery. So a couple of weeks ago Gabe suggested that maybe just Avery and I should fly down, and leave the boys with him, and wean Oliver. My initial reaction was that it was a horrible idea, because it would be cruel to force-wean Oliver like that, not to mention painful for me! But after I thought about it, it made sense. Oliver has done amazingly well - he took to a bottle very quickly, which was wonderful, because up until that point he'd never had a full feeding from a bottle! But he'll be 1 on September 7th, so it felt okay to see how he would do with some cow's milk, and he's been great. I shouldn't be surprised, he always copes with changes very well. So I've stocked up the freezer with breastmilk, so he'll have a combination of both for the next week or so, and then be done. It was stressful though, for a few days I was probably more stressed about that whole situation than I was about Avery's surgery!
I have told you in the past about the wonderful father that my husband is. I have no doubts that he will take wonderful care of him while I am gone, but I still feel gut-wrenchingly guilty about leaving my little boys for 8 whole days. Brogan just barely turned 3, but he at least understands that he'll be having a special week with Daddy while Avery and I go to see a doctor in Texas. He says that he's going to have fun, and that doctors are not fun. Oliver, of all my three children, is the most attached to me, so I am worried that he will be sad. Especially because he's getting a tooth right now, and he struggles at night when he's teething :( I hope that tomorrow the tooth will come out so that he at least won't be suffering with that without me.
Sorry, I don't mean to ramble.
As for Avery and I, I am feeling very positive! I am excited about the possibilities this surgery presents. She understands what the surgery is, and is also feeling excited I think. On Sunday as we drove to church, I was listening to her talking to Brogan about her surgery. Brogan said "Yes, and my surgery!" Avery said, "No, Brogan, you don't need surgery, because your legs are already loose!! My legs aren't loose, they are tight.... They're the worstest legs ever!" It was quite sad to hear her say that actually, but she was a little bothered when she realised that we'd heard what she said, and didn't want us to listen anymore, so she spoke very quietly to Brogan so that we couldn't hear.
I need to go finish packing and go to bed. In the morning I am taking Avery to get a manicure and pedicure! I thought it would be fun for her to have pretty toes when she gets her casts off, and then a couple of days after I thought that, Groupon had a deal for a half price mani/pedi! Perfect!
I will try to keep the blog updated while we're gone, but I will at least make sure to post pictures and quick updates to facebook, so feel free to friend me if you want to :)

Avery's little secret...

2011-08-19T01:04:00.000-04:00

Remember how I mentioned that Avery had been doing things to show us that she didn't need surgery? Well, here is a little taste of what she's randomly been doing this past week!

Crazy exciting, right??! And side stepping???? Since when could she ever do that??! Amazing!

It does make me excited (tentatively) about what she might be able to do once those pesky ankles (and possibly hamstrings) are loosened up!

This time next week Avery will have completed all her pre-op stuff, and will be sleeping and fasting in preparation for her surgery...! The anesthesiology people called me yesterday, and we were all very happy to find out that Avery will actually be asleep before they do her IV! I think that was actually one of the parts she was most nervous about, because she hates having IVs put in. Avery was, however, a little disappointed when I told her that she would still be asleep when they put the casts on her legs!! Apparently she wanted to be awake for that part, "because it won't hurt!"

You could be a WINNER!

2011-08-17T23:49:00.001-04:00

Frantz Diamonds, a beautiful local jewelry store, contacted me last week and donated this beautiful diamond pendant necklace as a raffle prize to help raise money for Avery! (Have I mentioned that being involved in fundraising really gives you a brighter view of the world? There are so many good and generous people in the world!)

Isn't it pretty?! I think it's lovely!
If you'd like to enter the competition to win it, tickets are only a dollar each! (minimum of 3 tickets) To order tickets, click here. Or you can leave a comment with your email address, or send me an email telling me how many you'd like, and I'll send you a paypal invoice! My email address is josephineart@gmail . com
The winner will be announced on September 1st, which is the day after Avery and I get back from Texas :)

Abuelo's

2011-08-17T23:21:00.000-04:00

Last night our local Abuelo's restaurant hosted a Benefit night to raise money for Avery. It was so great! Our sweet friend Annie kindly watched after the boys for us so that we could take Avery to enjoy her special night at the restaurant, and we brought Avery's friend Kayla with us too :)

We were so busy talking to people and eating that I didn't have time to take many pictures!! But here is one :) Sweet Abigail came over to say Hi to Avery when she came in to eat with her family :)

We saw a lot of wonderful friends, and we were so humbled and grateful to see how many people came out to support Avery. The manager emailed me this morning and told me that they counted 123 participants :) Thank you everyone!

Fundraising Competition

2011-08-16T00:44:00.000-04:00

I have been spending a lot of my time recently working on various fundraising projects, in preparation for Avery's upcoming surgery and therapy. In the process I have learned a lot, and one of the things I have learned is that there are still a lot of good and caring people in the world! There are so many people who have been willing to help, and who have surprised and touched us with their generosity.
I want to tell you about a project my sister came up with. I think it is a really fun idea! Not only will it help Avery by raising funds, but it will also bring her some joy while she recovers from surgery! The idea is that you download and print one of a selection of photos of Avery. Then you take a picture of the picture in a fun/interesting/unique place. Then you pay an entry fee to submit your photo. Avery then gets to pick which picture she likes best, and the winner gets 10% of the total entry fees, while the rest goes to Avery's therapy fund! Isn't that the cutest idea?? And I love that Avery will have such a fun thing to cheer her up as she's recovering! I really look forward to seeing all the fun ideas that people come up with!
Please go take a look at the website here, and also the facebook group here.
Thank you Eveymartine/Aunt Evey (Or TV, as Brogan calls her!)

Feelings

2011-08-09T07:04:00.000-04:00

When I first sat down with Avery to talk about her upcoming surgery, I wasn't sure how she would take it. She likes doctors, but blood tests and the like get her quite upset, so I was concerned that she would be begging us not to make her go through with the surgery! I was really hoping that would not be her reaction, because I didn't want her to feel as though we were making her do it to be mean, you know??! So I was very careful to explain why she was going to have this particular surgery, and how it would help her. It was a blessed relief to me that it went over very well!!! Avery was actually rather excited about it!! I even had to tone her excitement down a little but, because she was saying things like, "After my surgery, I'll be able to walk all by myself! Without my walker, or my quad cane, or my wheelchair!!!!!", so I had to explain to her that it wouldn't be quite like that! I don't want her to be disappointed when she wakes up from the surgery and can't run out of the hospital.

In the past week or so, Avery's enthusiasm has dampened a little bit. Now that it's "this month", and we're counting down the days rather than the weeks, she has started to feel understandably nervous. We were driving home from her last swimming lesson last week, and she was telling me that actually, she didn't want to have her surgery until she was six. I asked her why, and she didn't have an answer. So I asked her if she was feeling a little bit scared or nervous. She said, "A little bit." She needed reassurance that she was going to be asleep for the surgery. "For the whole time, Mom? So I won't feel it at all?"

A couple of times recently, she has been trying to show me that she doesn't need to have surgery. The other night as we were getting ready for bed, she was showing me how she could walk up and down the space in between her and Brogan's beds. She'd stand up and take tiny steps from one end to the other - holding her arms straight out to the sides for balance, concentrating with all her might, using every bit of determination she had to keep herself from falling over, and briefly resting a hand on one of the beds as she wobbled. She actually managed to take 12 baby steps from the head of the bed to the foot of the bed at one point - her record in fact - before she had to steady herself on the bed, and then took two more steps and declared that her bed was 14 feet long because she measured it with her feet :) She'll do things like that and say, "See? I don't actually need to have surgery because I can take steps!" When we got back to the bedroom, I was sitting on the bed waiting for her so I could read her a story, and she tried to stand up and take some more steps, but Oliver was sort of in her way, and she couldn't step around him because she would have to lean too far to reach the bed, so she sat down on the floor and got very sad. It was the saddest I think I've ever seen her feel about her physical limitations. She said, "Ohhhhhh, now I'll never be able to walk to my bed again!!!" Now, it is not unusual for Avery to be a little melodramatic - if she gets poked in the eye, she'll declare that she'll never be able to see again - but this time she was genuinely unhappy. Tears welled in her eyes a little bit, and her whole body sagged to the floor. I scooped her up and sat on her bed with her on my lap, and she wrapped her arms around my neck and asked me, "Why??? Why does my brain tell my legs to do wrong things??" My heart was breaking for her as I tried to explain how she got sick before she was even born and that it damaged the parts of her brain that controls the muscles in her legs. She was so sad.

Avery's perception of herself is maturing. It used to be that she thought that everyone had a shunt. Even after she was aware of the fact that other kids her age were up on their feet and running around, she still thought that all she had to do was grow up, and then she'd be able to do all those things. On occasion, she has seen pictures or videos of people snowboarding or surfing, and she has told us that when she grows up, she'll be able to do that too. I think she is starting to come to a realisation that not everybody has to struggle and work the way that she has. I do not think that she quite realises everything about what makes her unique, but she is developing a clearer picture of herself in the world. It used to be that when other children asked her why she needed a wheelchair, she would say something along the lines of, "Oh, I can walk with my walker - my legs aren't broken or anything, but sometimes my legs get tired." 2 or 3 weeks ago we were out somewhere, and a little boy asked her why she was in a wheelchair. Avery was apparently not in the mood to deal with his questions, so I answered for her, in the way that she normally does. I said, "Her legs just get tired sometimes." Avery then piped up and said, "Actually, no, Mom!! It's because the muscles in my legs are tight!" I think there was even a frustrated sigh in there somewhere, as if I was being a little bit idiotic!! :)

One thing I will tell you. In that moment on her bed as I tried to comfort her, I was so grateful that I was able to give her the SPML surgery to look forward to! She needed something to hold onto, and I was able to tell her that, while it would still take a lot of work and practice after the surgery before she would be able to walk by herself, it would be less difficult for her to move her feet and her ankles, and that would make it a little bit easier for her to learn how to walk.

Learning and Growing

2011-08-08T11:05:00.000-04:00

Well, blog readers, I'm afraid I have to tell you that you have been sadly left out of the loop! Not intentionally, but ever since this particular decision was made, I have been too busy preparing for it to actually tell you all about it properly!! You already know that we had been talking about SDR and/or SPML surgeries for Avery, and that we were probably going to go ahead with the less invasive SPML. Well, that is what's happening. Avery is scheduled to have Selective Percutaneous Myofascial Lengthening done on August 26th in Texas. This will be followed by lots and lots of therapy.
One of the few things that most of our therapeutic and medical professionals agree on is that the physical condition of Avery's ankles is holding her back. With the spasticity and the muscle contractures, she actually has very limited use of her feet and ankles - almost every movement in her feet is initiated in her hips. That was an interesting thing to learn, but if you watch her move, you can really see it - even when she's trying to wiggle her toes, the movement starts in her hips, especially on her left side, which has always been the more affected side. It is why you will never see her sitting and swinging her legs, or kicking with her legs out straight - she doesn't really have control over her lower legs, independent of her hips. SPML will help her by loosening up those contractures, and relieving some of the spasticity. The months of ABM therapy will help her by helping her take control of her own body. We are hopeful that the combination will finally make it possible for Avery to prepare for those first healthy, independent steps.
We are excited about the potential benefits of this course of action, and feel good about our decision. But, after having sat down and estimated all the costs as well as we could, we realised that there was just no way that we would be able to afford it all by ourselves. Which is why, for the past month, I have been spending every spare moment on fundraising. I have spent hours and hours soliciting local businesses to participate in a discount card fundraiser, organised a benefit night at a local restaurant, enlisted family and friends to help, designed fliers, information sheets, hand-out cards, the list goes on. It has been crazy busy, but also a very educational experience for me! I have had to really put myself out there, and learn how to take rejection. I have been up until the early hours of the morning sending out follow-up emails and designing sections of the discount card. I am tired, a little burnt out, but excited. It must also be said that I have been truly amazed and touched by the number of friends and family, and even strangers, who have been willing to help Avery. Your generosity has made me a little bit of an emotional wreck (in a good way), and I thank you so much for supporting and loving my sweet girl. We are still a long way from our target, but it doesn't seem out of reach anymore.

Swimming Lesson #5

2011-07-27T07:39:00.002-04:00

Would you like to see how much progress Avery has made?

She is loving her swimming lessons, and has already come so far!!

Yesterday was lesson number five, and this is what she can do now:

A M A Z I N G !

More Trike

2011-07-25T23:00:00.002-04:00

Avery's skills on the tricycle just keep getting better and better! She has graduated from the little blue tricycle with the seat belt to the big red tricycle with the bell!!

She still reminds me to get her helmet for her, but she is starting to think that she's too big for the knee pads, and especially the elbow pads, because "I'm not going to fall over."

She can even ride barefoot now :)

She is loving the freedom and independence of being able to ride around the driveway! (We still haven't taken to the trails with her...it's been too darned hot!!)

I went and stood in the middle of the driveway with the camera...

She rode in circles around me, smiling...

and laughing....

and giggling....

and squealing...

and declaring, "You can't catch me, Mom!!"

I actually got a little dizzy, spinning around, trying to keep up with her!

Happiness :)

Oops!!
Hooray for the opportunity to acquire some normal childhood bumps and bruises :)

Silly Boy...

2011-07-25T13:19:00.000-04:00

Our three little ones are sharing a room these days, which has been working fine, and means that we've been able to turn the third bedroom into a playroom, which I really like! However, some nights, Brogan can be very disruptive at bedtime... This particular night, he just kept on making silly noises as I was trying to get Oliver to bed, so I sent him to time out in the bathroom while I finished with Oliver. When I went in to talk to him, I finished up with asking him if he was ready to be quiet and go to bed, to which he responded "No." So I said, "Do I need to make you sleep in the bathroom tonight? Because you can't sleep in your bed if you're going to be loud." He thought that sounded like a good idea, even after I refused to bring him a pillow and blanket. So I thought Fine, I'll let him lie here for a little while and then he'll want to sleep quietly in his comfortable bed. So I left. Everything was quiet, and when I went back upstairs about 30 minutes later, this is what I found...

Sound asleep!!

PS, Don't worry, I carried him through to his bed right after I took this picture :)

Happy Baby

2011-07-23T12:34:00.000-04:00

I think Oliver has been a little neglected on my blog, so here is a little post to show you what a sweet-natured, happy little boy he is :)

And he's getting so big!! He's cruising all over the place now, and climbing up the stairs, and playing in the toilet if I ever forget to close the lid.....!!

He LOVES the water!! For a while, Avery and Brogan would refuse to share a bath with him, because he would just sit there and splash and splash and SPLASH!!

Getting into mischief...

He is sweetness!

Hydro Day :)

2011-07-21T23:29:00.000-04:00

We are lucky enough to live only about half an hour away from the Higgins family :) Avery and I got to meet Owen and his Mom a couple of years ago, and we finally got around to getting together again this week! This time with the whole families :) We had a pool play date at the Higgins home on Monday :)

Two hydro babies in the awesome pool with the beautiful view!

Oliver exploring in between pool time.

He was ready to get back into the pool!

Isn't that a great pool??!

Avery and Sammy cloud watching :)

Brogan had a blast following Sammy around like a little puppy :) He really doesn't seem to realise that he's not a big kid!!

We ended up staying for dinner too, cooking hotdogs and burgers over the fire, followed by marshmallows, of course :)

Here is Sammy being the statue of liberty :) It made me giggle :)

Although Owen's and Avery's experiences have varied greatly since their initial diagnoses of hydrocephalus before birth, there is something about spending time with another hydro family which really makes me happy. I have a lot of really wonderful friends, but there is something comforting about being with someone who can do more than imagine what it's like to live through that moment when you learn that your unborn baby has hydrocephalus, because they have lived that moment themselves.

Thanks for being such wonderful hosts, Higgins family!! We all had such a fun day!

Art

2011-07-18T00:38:00.002-04:00

Here is a small sampling of Avery's most recent artwork:

It's a picture of me taking a shower in our bathroom, complete with faucets, toilet, and door! You should also know that the only word I helped her spell was "Something" :)

One of Avery's favourite things to draw - a rainbow! She also wrote this caption without help, although when I read it aloud she was upset to hear that it said "This is FOR Avery", so she had to change it to "This is FROM Avery" :)

Here I am at my very own birthday party! It's a cloudy day, Avery is hiding in a green sleeping bag on the floor, there are chairs for playing musical chairs, and there are purple balloons tied to one of the chairs :)

Brogan getting ready to get in his rocket and blast into space!

Practicing her own special version of cursive :)

Percy, Emily, Thomas, and Diesel!

10, 9, 8, 7, 6, 5, 4, 3, 2, 1, BLAST OFF!

I am quite beautiful!

And here is an example of Brogan's work:

A Dinosaur!!

Swimming Lessons!

2011-07-13T23:23:00.000-04:00

Remember a couple of weeks ago when I wrote a post about how Avery is able to keep up with her peers on a tricycle? (She is doing even better with that by the way!!) Well, the other area in which Avery is really, truly able to hold her own is in the swimming pool. For a long time now she has been pretty much independent in the pool. With only the help of two noodles to keep her afloat, she has been able to go wherever she wants to go without anybody's help!

Well, maybe a month ago, Avery suddenly decided that she was ready to start wearing goggles and putting her face underwater! And she also started doing this:

This was at our hotel when we went up to Sterling, VA, for ABM therapy on July 4th/5th.

We had the whole pool to ourselves :) And therapy was great!

We have been sort of talking about signing her up for swimming lessons for quite a while, but after this big explosion of independence and exploration, we decided that we should really go ahead and do it! So I had a long conversation with the pool manager at our YMCA about whether we should sign up for private/semi private lessons, or whether she could be involved in a regular group lesson, and he said that he would want to let her try the group lessons so she could be fully involved, etc. (He was really great!) So we signed her up, and yesterday was her first class! She was so excited!!

Waiting for her lesson to start! All day she had been asking if it was time for her swimming lesson yet, and FINALLY it arrived!!

Sitting by the water with her fellow beginning swimmers, listening to their instructor (the pool manager, who was so great about wanting to make it perfect for Avery!)

Holding onto the rail in the deep end of the pool, waiting for her turn to do her first swim (Which I missed, can you believe it??!)

She did an amazing job!! And I was so impressed with the YMCA staff :) Avery spent the first several minutes taking turns with the other 3 little girls in the class, but then the rest of the time she basically got one-on-one attention with the other instructor, Susie. It was really great :) And Avery had a BLAST! She is so excited to go back!! She will be taking classes every Tuesday and Thursday for the next 4 weeks, and I am pretty certain that she will love every second! And you know that all that low impact exercise has got to be good for her poor tight muscles.

Hooray for Avery!

SDR vs SPML

2011-07-12T22:10:00.000-04:00

Avery in her new exercise room :)

Mystified by today's title? Welcome to our world. We have been wrestling with some decisions for a few months now, but I haven't wanted to write about it before now. I still don't want to, but we're getting close to actually acting now, so I think I should record some of the process.
One of the things that changed when we started ABM therapy was that we stopped making Avery wear AFOs. The reasoning behind this is that it limits the variation of movement and therefore the forming of new patterns and connections between brain and feet. Anat's article explains this better than I could. Along with everything else I know about the theory behind ABM therapy, this makes complete sense to me. And it is also one of the reasons I wish we had found out about ABM therapy earlier in Avery's life. So she hasn't been wearing braces, which means that she has been able to "experience" her feet more as part of her body, but, of course, since she does like to be up on her feet, it has resulted in this:

Obviously, this is not good. Obviously, something needs to be done. Shortly after we started Anat Baniel Method therapy last summer, Carla suggested recommended that we look into Selective Percutaneous Myofascial Lengthening (SPML). She has not been the only one to say that one of biggest things holding Avery back is the tightness and spasticity in her ankles. She also suggested we see a specific podiatrist in NY, since he spends a lot of time watching the child's movement and function before he designs the AFOs/braces he thinks would help. The braces Avery was wearing before weren't really much better than "one-size-fits-all", all they did was take a cast of her foot and send it off to be manufactured. They were hinged, but very limited, and the last set we had caused chronic blistering. So Carla recommended that we look into going to see Dr Nuzzo about SPML, and Dr Jordan for AFO possibilities. The other surgery we have been researching is Selective Dorsal Rhizotomy (SDR), specifically the one performed by Dr Parks in St Louis. Until recently, Gabe and I have had opposing opinions - he was leaning towards the SDR, and I've been more for the SPML.

On the internet, there is a lot more readily available information and testimonials/videos/etc about the SDR than there is about the SPML. It is frustrating, because it could very well be just better marketing. The St Louis people have done a really, really good job of putting information out there. There's a facebook group for people interested in SDR, with a lot of amazing pre- and post-op videos. Like this one. (I do not know what the privacy settings are on this video, hopefully it will let you watch it. The girl is 9 or 10, and tall and skinny like Avery, so it's easy to imagine this is what Avery could be like a couple of years from now) It is interesting too, because every single day there are families from the UK posting in the group, talking about how much money they've raised to bring their child to St Louis for the surgery. And every single parent we've found has basically said that it was the best thing they ever could have done for their child. We do not know for sure that Avery would even be a candidate for SDR, some of the contraindications are congenital hydrocephalus (according to wikipedia, but when I spoke to the lady at St Louis, I know I mentioned Avery's hydrocephalus, and she still sent me all the paperwork), damage in specific parts of the brain, dystonia, etc. So we are doing all the paperwork to at least find out if it's even an option. The following video was something we had to do for the SDR team to review:

It was actually really fascinating for us to watch! We live with Avery every day, so of course we're quite aware of her capabilities and limitations, but actually sitting down and videoing it all like this was quite an eye opener! I was even surprised about a couple of things: how well she was able to bring each leg up into a half kneel, and how poorly she was able to move her toes and feet. We've decided that we're going to start doing one of these videos at least every six months (more often if we do either of the surgeries) as an excellent record of her progress. Plus, she is so cute in it :)

Now about the SPML. There are a lot of Drs out there who do percutaneous muscle or tendon lengthening. It is frustrating that all the available methods are known by the same acronym, PERCs, because it makes it hard to know which one people are talking about. Dr Nuzzo's method is less invasive and has better results than traditional PERCs surgery. Trouble is, he's in NJ, and not covered by our insurance. But there is a Dr Yngve in TX who does the same surgery, and is covered. Also, Dr Nuzzo and his team have not mastered the internet. His website is horrible. Details of the surgery itself is there, and that's great, but the website itself is not well designed, and is difficult to navigate. I feel that when so many of your patients are having to make long distance decisions, a well designed and informative website, complete with plenty of pre- and post-op videos, is essential. Dr Yngve's website is better, probably simply because he is part the University of Texas Medical Branch. Dr Yngve learned the method from Dr Nuzzo, and the results have been just as good. There are only a few videos on youtube.
I have been working on this post all week, so I just need to finish it. Long story short, we are still not 100% sure about what we are doing. BUT, Avery has an appointment with Dr Yngve on August 25th, and if all goes according to plan, she will be getting the SPML surgery on August 26th. IF we still think it's the right thing to do at that point. It is a hard decision to make. It was easy to agree to the surgery to place her VP shunt, because without it her chances of even surviving were minimal. This time, the outcomes are not nearly so black and white. We have been on the phone with our insurance, and the good news is that whichever one we choose, it will not be nearly as expensive as we were fearing it might be, since both would be covered. Thank you Aetna!! (It is sadly rare to be happy with health insurance!) The bad news is that in both cases, but especially the SDR, the amount of PT needed post-operatively will become rather expensive. We are trying to come up with some viable fundraising ideas.
Anyway, sorry if this has been muddled and unclear... That's sort of the way my brain is right now...!!! I will try to post again this week with some more fun and light news! Avery had her very first swimming lesson today, and I know you'll be dying to hear about that!! It was GREAT!!!

A Picture Story: Losing a Tooth!

2011-07-01T22:01:00.009-04:00

It should be noted that it was Avery's idea to pull it out!! She was very excited! She changed her mind right before it came out, but then once she saw it, she was excited again!!

It's gone! It's really gone!!!

The note she asked Daddy to help her write for the tooth fairy!

Putting it under her pillow. When she woke up in the morning she had a new toothbrush (which she requested!!), a dollar, and a note from the tooth fairy :)

P.S. I'm not sure whether she really believes in the tooth fairy or not.... when Grandma asked her about it a couple of weeks ago when her tooth was first wobbly, Avery very snootily informed her that the tooth fairy wasn't real! But she was very insistent about leaving a note for the tooth fairy, so who knows??!

Take me out to the ball game :)

2011-06-26T21:54:00.000-04:00

Saturday night, some good friends of ours watched Oliver for a few hours so that we could take Avery and Brogan to a Salem Red Sox game :) It was Avery's 3rd time, and Brogan's first :)

Avery chose to take her shiny new walker :)

Enjoying the view. Gabe tried to sit down and discuss some of the rules of the game with Avery, but she lost interest pretty quick. Weird... :)

I think that the little one's favourite parts were these in between parts :) Avery particularly liked the dance competition, and was very disappointed that she didn't get to join in :)

Avery loves taking pictures these days. I should post some of her self portraits, we have hundreds, and they're quite stunning ;) These are 3 of the pictures she took at the baseball game! Her hand, her brand new walker (her old one was stolen out of our carport about a week before the new one arrived. Can you believe that?? Who steals a child's walker??????), and ME!!

My little cuties. On the train track. Yup, that's right! There are train tracks everywhere, you just have to know where to look :) At the baseball field, the train tracks are the grates by the fence, and the trains that ride on it are small enough to jump over :)

Brogan made some new friends. They were very nice, and let him use one of their foam things. He was very happy :) Brogan has never met anyone who wasn't his friend :) We'll pull up to the grocery store, and he'll see random strangers walking through the parking lot and exclaim, "Wook!! My friends!!!"

She's a cutie :)

Of course we had to get a picture with the mascot before we left :)

And we also stopped in at the poorly run and ill-prepared bouncy play area, and they had a blast :)

And one more picture of Avery on the way home, just because she's cute!

Ophthalmologist

2011-06-26T11:55:00.001-04:00

On Friday Avery had her routine appointment with her ophthalmologist, Dr Facciani. In the van on the way there, she made him some cards, including one which said "Avery loves Dr Facciani" Cute girl :)

As usual, she wore funny glasses...

...and funny patches

She was pretty cooperative during her exam.

As soon as she was done, Brogan hopped up into the chair and said, "My turn!"

Then we waited for the doctor.

Brogan watching Cars in Oliver's carseat :)

Oliver is very talented when it comes to making mess with his food. Here he is snacking on chocolate teddy grahams and goldfish, but this is pretty much standard for every meal and snack. We have to wash his hands, arms, face, neck, ears, hair and thighs after every meal!!

Brogan was still hoping to have a turn, so he sat in the chair while Avery continued her exam in her wheelchair :)

It was time for a dilated exam again, and Avery was super brave as she had the eyedrops put in! She wasn't happy about it, as you can tell by her tense posture and her hands up on her face, but she didn't cry or fight. I was very proud of her :)

Playing as we waited for the eye drops to do their job.

Being a good girl during her in-depth examination.

2.5 hours after arriving, we were done. Phew!

Everything was pretty much the same. Mostly. He still doesn't think she has any depth perception. Her vision is stable, but he referred us to a low vision specialist. We'll be seeing him (Dr Scothorn) in August. We still need to be patching every day. I find it harder and harder to patch her. Not because she fights or resists it, just because I don't like doing it. But it has to be done.

The biggest news of the appointment is that we get to cross one diagnosis off Avery's list! He says that he is 99.9% sure that she actually doesn't have optic nerve hypoplasia afterall! He says that her optic nerves are pale, but that it actually doesn't look like hypoplasia. :)

Girls got Mad Skills

2011-06-23T00:55:00.003-04:00

May I present our little speedster, Avery:

Avery has not only developed the strength and coordination necessary to ride a tricycle, she has mastered it!

A current favourite activity for Avery and Brogan is to go out on the tracks They request train tracks and streets to be drawn on our driveway so that they can drive and chuff away and be really useful engines

But Avery will not be tied to the flat driveway alone, she has conquered the path to the front door….

…the slope up into the carport, and even transitioning from the driveway to the grass and back again! (Can you believe I haven’t got a picture of that yet?? Neither can I!)

She is an old pro!

Uh oh, someone’s blocking the track!

I cannot even tell you what a joy it is to watch Avery riding around and easily keeping pace with her peers!!!

She is an absolute super star!!

And she loves it!!

Check out Avery’s mad skills:

It is time to take these skills to the trails! In the next week or so, we'll be taking the family for a ride on the greenway so that Avery can really enjoy her newfound freedom :)

Why my husband is the best Daddy

2011-06-19T00:01:00.000-04:00

I was going to try to make this organised and pretty, but my time is up, and I want to get this posted in time for Father’s Day tomorrow. So here are some pictures, and some of the reasons why Gabe is the best father I could ever have dreamed of for my children.

He makes the time to spend special one-on-one time with the children. (At the circus with Avery for his birthday last year, and making Brogan smile by a pond!)

He is constantly coming up with creative ways to make therapy fun for Avery. Here are two of the stretches he came up with and named (the one on the left is the Dinosaur stretch – her leg is the tail!) to help her not mind doing them so much.

Last year we got a Wii for Christmas, and I got Wii fit. Gabe helped Avery play to, and within a couple of weeks he had installed hardware into the ceiling to hang ropes and rings from so that Avery could stand up and play games by herself. They also make excellent rope swings, and Avery’s arms are so strong Next on the cards, our front room is basically being turned into a therapy room.

He makes them laugh. A lot!

He will stay up with them all night if that’s what it takes to help them feel better when they’re sick.

Because he doesn’t want Avery to miss out on the opportunity to experience and enjoy the outdoors, he plans hiking excursions with her, strapping her to his back if that’s what it takes. He wants to take her on as many hikes as possible before she gets too big for him to carry.

On their recent outing to hike up to the Cascades. In preparation for this hike, he modified the jogging stroller so that he could take off the two back wheels if the trail got too rocky.

He is silly, and encourages our children to have fun and be silly (Don’t worry, the trash can was clean, and had nothing but freshly raked leaves in it!)

He builds igloos and blanket forts…

…and homemade playdoh!

He makes tasks seem like fun! The children were sandy, so instead of just rubbing them down with a towel or something, Gabe pulled out the leaf blower and blasted the sand off them

He tolerates Brogan’s helpfulness!!

He knows how to make them feel better when they get hurt or feel sad.

He’s an excellent climbing frame

He does fun stuff with them on a regular basis! (Building a snow creature (?) with Avery, and playing in the river with Avery and Brogan on a recent camping trip)

He helps them enjoy learning about things (here he is just showing them a dragonfly which sat on his sleeve for several minutes)

He works hard to provide everything for them. (We visited him at work this week and they sat in the ambulance for a while)

We love you Daddy.

You are the BEST.

Seriously.

Happy Father's Day!

xxxx

Dentist and first loose teeth!!

2011-06-16T19:34:00.042-04:00

Avery and I had our routine dentist appointments :) The timing worked out perfectly, because on Friday evening when we were getting ready for bed, we noticed that Avery has two loose teeth, and two adult teeth coming in behind!!!! We were so surprised!!! I wasn't expecting loose teeth for at least another year!!!!

Avery is finding it pretty exciting :) She's looking forward to getting a surprise from the tooth fairy, although when Grandma and Aunt Evey asked her about it (on separate occasions), she condescendingly told them that the tooth fairy isn't real :)

In the waiting room :) She really likes our dental hygienists, and she was very excited to show off her loose teeth! It was my turn first, and as Avery watched, she decided that actually, she doesn't want to be a doctor anymore, because she thinks that being a dentist would be more exciting! So now she wants to be a dentist :)

The dentist came in to check her teeth too, and he reassured us that we don't need to worry about her grown up teeth coming in behind her baby teeth - he says they should move into the right place after the baby teeth fall out :)

Avery also had her first fluoride treatment, and handled it like a super star :)

We also discovered that in addition to the two adult incisors, her top two 6 year molars are already in!! I had no idea!

Of course, Brogan wanted to have a turn too! Avery always gets to do the coolest stuff, and he doesn't like being left out ;) So he climbed into the chair, and the hygienist was nice enough to count his teeth for him :) I was super surprised that he actually let her do it, he can be a bit funny with sensory stuff.

Then we went home happy with our loot bags filled with toothbrushes (Lightening McQueen for Brogan, Princess Tiana for Avery), toothpaste, and little bouncy soccer balls :)

Goodbye Preschool!

2011-06-10T12:35:00.002-04:00

My baby girl isn’t a baby anymore!

Yesterday was her last day of preschool. Ever!

As she said to me when I picked her up from school, “Mom! Today was the last day of school! Now I’m ready for KINDERGARTEN!!!”

This is what we made for her teachers to say thank you. We planted sunflower seeds in the pots, and decorated them with stickers and glitter, and Avery wrote her name on each pot. Then I used some of my flower hair clips to make little flowers to go in the pots, so that it didn’t look like we were giving them pots of dirt

Avery got playdoh, bubbles and sidewalk chalk from her teachers, and we also got this:

Preschool Memories Book

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I LOVE this little book! It has pictures of Avery taken throughout the school year, starting with a picture they took at orientation at the beginning of the year (how about that big belly, eh??!). Then there are a few selections of some the work Avery did at school, and her handprints on the last page. I think it is adorable!! Love it!!

I let Avery take the camera to school for her last day so that she could take pictures of her friends. Her are a few of the pictures she took (with the other children’s faces blurred out):

Ms Faddis at her desk. Some of the girls in her class.

Some of the boys in her class. Mrs Williams and some friends.

And here are some pictures her teachers took for her

She also got pictures of herself with each of her teachers, which I was really pleased about because she loves all of them

Ms Faddis Mrs Shelton

Mrs Williams

It was a great year

As for kindergarten…. we’re not sure what we’re doing yet. What we do know is that she graduated out of special education (hooray!) because she is considered fully independent with her wheelchair and walker, so she will be in a mainstream classroom, which is both thrilling (for us) and terrifying (for me, not her). We are waiting to see whether she can get into Salem schools as a non-resident, and the other option is homeschooling for the year. We will see….!

Welcome Home, Bunny!

2011-05-17T09:11:00.002-04:00

Last week we took our monthly trip up to Herndon for therapy on Monday and Tuesday. When we got home on Tuesday night, we realised that Avery’s beloved bunny had been left behind! She was heartbroken, and thought she would never be able to go to sleep (she normally sleeps with it draped over her neck and shoulder). She only finally managed to go to sleep after Gabe promised her that we would ask Aunt Jess to mail it back, and that when it arrived, we would have a “Welcome Home Bunny!” party, and she could invite 3 friends, and make bunny ears, and do fun, bunny stuff! Every night she was heartbroken all over again, so when the bunny arrived in the mail on Saturday afternoon, we knew we had a party to plan! So on Sunday morning, I called the 3 special friends (Kayla, Paisley and Sam) to invite them to Avery’s after-church party.

Since it was a very last minute party, Kayla was the only one of the 3 friends who was able to come, but they had a blast! First things first, they each made a pair of bunny ears to wear, and then they got down to the serious business of swinging while I finished making dinner.

On the menu for the special party – Individual Bunny Pizzas! With pepperoni eyes and mouths The guest of honour sat with Avery, who was the only one still wearing her bunny ears! She wanted me to cut up the pizza for her, until I showed her that she could pull the ears off and eat it with her hands, and she thought that was pretty great! haha

We already had plans to have the missionaries over for dinner that day, so they got to join in the festivities. Whole carrots were the side dish to our bunny pizzas…it seemed appropriate!

After pizza, it was time for dessert, so we headed inside to make bunny cupcakes We had chocolate or vanilla cupcakes, which we took out of their papers, flipped over and covered in frosting. Then we decorated them with chocolate chips, jelly beans, marshmallows and raisins.

Kayla and Avery with their bunny cakes. I had to take the pictures quickly because they were ready to eat

The menfolk hard at work on their delicious and cute creations

Of course, Brogan (with his face still coated with pizza sauce, and a sweaty head from all the running around and excitement of the party!) was only really interested in eating all the decorations… He didn’t want to deal with all the unnecessary bunny nonsense!!

Elder Hansen with his bunny

Elder Stoker and his cupcake

Gabe decided to rebel against the bunny theme and made some kind of mutant pig instead. I think it looks quite a lot like an Angry Birds pig!

And that was the end of our special “Welcome Home, Bunny!” party! She (and her bunny) went to bed very tired and very happy that night

Claytor Lake, Day 3

2011-05-15T22:42:00.001-04:00

I had another early start after Oliver woke up too hot and sweaty inside my sleeping bag (better than freezing though, eh?), so by about 5:45am he was entertaining himself with a couple of toothbrushes while I got the fire started and ready for breakfast!

Enjoying a breakfast of scrambled eggs and pancakes, Brogan with his excited face, and Avery with her grumpy face

Then it was time to head back down to the lake to try one more time to catch a fish for dinner Both the children had been excited about the prospect of eating a daddy-caught fish, and we didn’t want to let them down! Brogan helped Daddy drive…

Avery and Brogan ate chips and watched Curious George, and Oliver slept while Gabe went after the very same fish who had evaded him and cost him his keys 2 days before. He tried lots of different lures and techniques, and the fish kept on nibbling and spitting it out, but, finally…

A 15 inch largemouth bass! Not bad for a first real fish, I’d say! And it certainly meant that we all left that campground on a high! It was very exciting, and we were all very excited to see how it tasted

I was pretty proud of myself for being able to fillet the fish. When I was a teenager, I couldn’t even touch store-bought raw meat of any kind, and thought that when I got married, my family would have to become vegetarian! But now I know that I am able to prepare a freshly caught fish, I feel quite capable I certainly didn’t enjoy it though…and it wasn’t as easy as the video on youtube made it look… But I did it, and put it in a ziploc bag and put that bag into another bag of ice, and then we packed up camp!

Avery and Brogan “cleaned” the styrofoam airplane During the trip, Avery had made several churches in the gravel, making a pile and putting a stick in the top so that we could all go and learn!

Before heading home, we took Avery for a riding lesson at Easy Wind Stables. (We love groupon!)

If you have followed my blog for a while, then you know that Avery has done several seasons of hippotherapy, and LOVED it. She is currently out of hippotherapy since she no longer receives PT locally. Even though she has had experience on a horse, I was still pretty nervous about letting her go out there. Her horse, Red, was a big horse, and she didn’t have any spotters, so I was nervous, but she did really great! She was comfortable and confident up there, even after I told her over and over to hold on tight! As soon as they were in the ring, Avery started talking to Leah (the instructor), telling her about stuff, asking her questions, responding to her questions, and I don’t think she stopped talking the entire hour! It was pretty cute

Brogan and Oliver enjoyed some down time on the blanket, and Brogan only begged to get on the horse a couple of times…!

By the end of the lesson, Avery had both hands off the saddle on the reigns, and she was looking like an old pro!

Riding Lesson

When we eventually got home, I looked up some ideas on how to prepare the bass, and this is how it turned out.

Gabe trying the first bite

It was scrumptious! Both Avery and Brogan finished every last bite on their plates and loved it. All in all, it was a very successful and enjoyable trip, and the fish was the icing on the cake

Claytor Lake, Day 2

2011-05-12T14:03:00.000-04:00

Day 2 started out earlier for some (ahem, me) than others! Avery and Daddy ended up transferring to the van in the middle of the night because Avery woke up with a sore side from sleeping on the pads we brought, and Gabe was freezing, so they took some bedding and slept in the back of the van. After I fed Oliver (who spent a good portion of the night in my sleeping bag with me because I was worried about him being cold) at about 5am or so, I managed to rock him back to sleep, and then decided that I was too cold and awake to go back to sleep, so I got up and got the fire started. We enjoyed a yummy breakfast of pancakes (made at home and warmed up in the pan over the fire) and scrambled eggs.

After breakfast, we went and explored a little 1 mile hike called the Bent Tree Trail. The woman in the visitors center had obviously not been working there very long, because she didn’t know it existed, and gave us incorrect directions, but we were able to find it on our own One of the many things we had forgotten to pack was the baby carrier, so we got creative and made this one out of Avery’s backpack, a small pillow and two bungie cords!!

Not far into the hike, we came across this dead tree, and Gabe saw an opportunity to use his big knife to carve Avery’s name into the trunk! (Can you see it?)

The Big Knife was used again to harvest this mushroom for the children to examine (overkill maybe? ) They were pretty fascinated.

The trail looped through a forest, some parts were mostly pine and in other parts we were surrounded by beautiful, big, tall trees like these. (I thought of my cousin Natalie as we were trying to guess the names of all the different trees!)

Brogan liked all the tiny wildflowers along the way. The rest of us were given many pretty little gifts

Super Strong Brogan, Daddy and Avery!

Avery and Brogan doing pull-ups :)

There were a lot of these in one area along the way, they just spouted straight out of the ground like this. We didn’t know what they were…any ideas?

A few hundred feet before the end of the loop, Brogan’s energy levels plummeted to zero! All the excitement and running around took its toll, and he couldn’t take another step!

After the hike, it was time to leave the park for a couple of hours. Avery had an appointment with her (former) physiatrist. So we made a stop at Walmart to pick up a few essentials (we wrote lists of things we need to bring next time, so hopefully next time we will be much more efficient and prepared), and made our way to her appointment, smelling like campfire and dirt…! I think that all I’m going to say about the appointment is that it was probably the last time we’ll ever see Dr Brown. But at least we got prescriptions for a new walker (she’s too tall for her current one), and bigger wheels for her wheelchair (again, too tall!).

Then we went back to Claytor Lake, and tried again to catch a fish for dinner!! We were going to go back to the same spot, but there were lots of people there already, so we went and found a quieter location near the cabins.

Brogan was still exhausted from all this camping nonsense, so he relaxed a little and watched Curious George while Daddy fished. When we set out from home the day before, we were undecided about whether we were going to stay one night or two, but after several failures that first night, we decided we had better stay two nights because it could only get better! So, although we had thought that we weren’t going to fall back on movies or any electronic entertainment for the duration of the trip, we decided that 24 hours was enough, especially if it meant that Gabe was able to get some quiet time for fishing!

Oliver enjoyed some pureed sweet potatoes, and after spending some time playing with her new airplane (from her Arby’s kid’s meal at lunch time), Avery went to help Daddy. Gabe decided to call it a day after a while though, because there had been no nibbles, so he and Avery threw rocks in the water for a while, until Avery somehow managed to hit herself in the face with one.

So they went “for a little walk”, which is often what Avery needs to help her feel better when she’s hurt or upset.

Back at camp, you could see Brogan’s exhaustion in his slump as he watched the fire

It was Gabe’s turn to gather firewood, so he dragged this entire fallen tree back to camp, just because he could! Of course, we had also forgotten to pack Gabe’s hatchet, so we couldn’t use this wood, but I’m glad he’s so big and strong anyway

With no fish to cook, our back-up meal that night was hotdogs and chips, followed by some nice smoky hot chocolate! For the second night in a row, Brogan was begging for bed The one hurdle to sleep was the big lump he had acquired on the back of his head when he fell backwards of the picnic bench onto Oliver’s carseat. The boy is an accident magnet. it was a really big lump too! Poor boy. As we were walking back to the tent from the bathroom, he was asking me over and over to move the lump! “Mama, move ah hit! Pleeease! Move ah hit!” If only I were as wise and powerful as my children seem to think I am…

After Avery and Brogan were asleep, Oliver woke up and spent some time helping us roast marshmallows before we turned in for the night. It was another chilly night, but we were more comfortable than the night before.

Claytor Lake, Day 1

2011-05-11T22:23:00.000-04:00

This year we have big plans to go camping. A lot. So we kicked off the season with a trip to Claytor Lake State Park! We arrived on Thursday afternoon and, after setting up camp, headed down to the lake to do some fishing!

Brogan “helping” Daddy… He really liked the lures. So did Avery.
Avery and Brogan wanted to throw rocks in the water most of the time. I wonder why we didn’t catch any fish that day….
Pretty lake
A duck!
Daddy fishing.
Oliver being good. As normal.
A picture taken by Avery after disaster struck!! Gabe was after one particular fish, and it kept on nibbling the lure but then spitting it back out again. I finally settled down to nurse Oliver, and of course it was about 30 seconds after that that the fish decided to bite again and drag the line under a log, so Gabe was calling for the net and trying to get Brogan and Avery (who had been super excited about catching a fish) involved in the process, and they were refusing to help. Meanwhile, Gabe had jumped into the lake, and then realised that he still had his phone, keys, and wallet in his pocket, and in his efforts to throw them all back onto the shore, the keys hit a rock and fell into the water! So this is him trying to find the keys. And the fish got away…
We finally gave up on the keys and headed back to camp. Where we realised that the grill was in the van. All three children enjoyed playing with the gravel, but, of course, everyone was getting pretty hungry as we tried to arrange for someone to come out and break into our van for us! (We had another set of keys inside)
We collected wood and Gabe got a fire started with his nifty new flint
Eventually, park police came by and got our van opened up, and we were able to get the grill out to cook dinner. Then we realised that we didn’t have the connector for the propane tank, so we couldn’t use the grill!! haha! So we cooked our chicken over the fire, and it was delicious.
Chicken, bread, and carrot sticks. Fancy!
Then we introduced the children to smores!
They approved, but Avery refused to make more the next night because it was too sticky!
By the time we were finished with dinner and smores, Brogan was begging to go to bed!!! Which, if you know Brogan at all, meant that he must have reached exhaustion quite some time ago! It was a cold night, getting down to about 40F, but we survived And we made plenty of mistakes in planning, packing, and execution to learn from!!

Giant Puddle

2011-04-25T22:49:00.001-04:00

A couple of weeks ago we had a big rain storm. It started raining sometime during the night, I think, and by lunch time, our patio was a pond! Water did come in under the door, but luckily it wasn't more than 2 towels could handle, and I ran out and threw down a couple of sand bags to keep the rest out.

When I showed Avery the puddle through the dining room window, she immediately wanted to go out and play it. The sun had come out by then, and it wasn't raining anymore, but at first I told her she would have to wait til Daddy got home. Then Brogan saw it, and I had two extremely excited little ones, so I changed my mind and took them both outside to play.

I was so glad that I didn't make them wait til Gabe got home, because by the time he arrived, it was almost gone!!

They had so much fun!!! Splashing, and running, and pretending to catch fish, and holding worms, it was great :)

Splash Splash!

Easter 2011

2011-04-25T00:16:00.000-04:00

I am planning on playing catch up this week, but I will start with the newest :)
We had a really great Easter weekend at our house. Besides the fact that Gabe got poison oak all over his arms, that is! We had a fundraiser yard sale/bake sale at our house yesterday to raise money for Avery's therapy, and it went really great! I didn't get any pictures because we were so busy that I completely forgot about the camera until it was over! But it was a lot of fun, and we raised a lot more money than we were expecting. Thank You to all of those who donated items to sell, and to all of those who came out and bought cakes and cookies and stuff! We appreciate you all so much. And to the anonymous angel who left the note on our door... Thank you. So much.
Today I got asked last minute to fill in for one of the teachers in Primary at church, and it turned out to be just wonderful. I felt blessed to be there, and my faith in Jesus Christ was renewed. Thank you to the lovely people who put on such a wonderful presentation for our children.
Here is a video of the Easter egg hunt we did after we got home. We did it in the driveway because it was more walker-friendly, and also because it was a little cooler! It was fun :) Please excuse all the yard sale debris... we were too exhausted to finish getting everything cleared up last night!!

Little Feet Meet

2011-04-19T10:00:00.020-04:00

Avery had her very first school field trip today :) She got to participate in Little Feet Meet, a sports event for children with special needs, sponsored by Special Olympics Virginia.

Avery arrives with her classmates! We had to wait a loooooooong time for this :)

A friend lent me her Cricut machine for the week, and I had a lot of fun with it :)

Avery's first event!

This was one of the cutest things ever! Without any prompting, all the little ones started cheering for each other :) Adorable!

Avery with her classmates.

The award ceremony at the end! They each got a ribbon and a card stamped with all the events they did! Such a great event :)

“Draw a circle around him, Mom!”

2011-04-14T22:43:00.000-04:00

534 miles

2011-03-30T13:07:00.000-04:00

7:30am on Monday morning Avery, Oliver and I hopped in the van and made our way up to Herndon, VA, for Avery's monthly ABM therapy. 36 hours, 4 therapy sessions and 534 miles later, we got home again yesterday evening. It was exhausting, as ever, but completely worth it. As ever. Avery is making great progress, and it is fascinating to watch.

I have lost the charger for our camera battery, which is one of the reasons my poor little blog has been neglected recently, so for today I am just posting a picture from a few weeks ago when the sun came out and we were able to enjoy a little bit of time outside in our backyard, for the first time in a long time :)

Cute book

2011-03-10T00:36:00.000-05:00

Gabe bought a couple of books for Avery a little while ago to help her feel good about the pending arrival of her wheelchair. Susan Laughs is a really cute little book, and I loved Avery's reaction to it! It's all about a little girl called Susan, and all the things she does, like laugh, play, get angry, make jokes, etc, and on the last page you see her sitting in a wheelchair. Of course, the purpose of it is to show that children with disabilities are just like other children. Avery loved all the pictures as we were reading it for the first time, and she kept on laughing or asking questions about the various things that Susan was doing in each picture. When we turned to the last page and she saw the picture of Susan sitting in her wheelchair, Avery asked why she was in a wheelchair, so we talked about the various reasons that could make a wheelchair a necessity, including the reason she was getting one. She listened quietly, and then, as I closed the book, she looked at me and quietly said, "I really loved that book, Mom!"

The wheelchair has continued to be a positive experience for her! Yesterday when she got home from school she told me about how her teachers turned off the lights so that she could show her friends how the front caster wheels light up. I spoke to them on Monday about how I hoped that they could help foster Avery's enthusiasm for her new wheels, so I was pleased to hear that they had been showing excitement about it. I wish I could say as much about Kristen, the school PT. She called me yesterday to "touch base" about the wheelchair, which you may remember she has been against from the beginning. The 3 things she had to say about it were,

The front right caster doesn't tough the ground quite as firmly as it should. We had already noticed this, and it is just a matter of adjusting the angle.
It doesn't have a seat belt.
She saw Avery stepping onto the footrests to climb into it.

That is all very well and fine, but when she has made it quite clear that she didn't want Avery to have a wheelchair in the first place, it just felt as though she was being unnecessarily negative. But again, I can deal with that. The thing that bothered me was that when I asked Avery what Miss Kristen thought of her wheelchair, she sighed and said, "She said it didn't have a seat belt so she couldn't buckle me. And she "No! No!" because I climbed up wrong." Could she not have tried to be a little more positive with Avery?

In other news, I am supposed to be registering Avery for regular kindergarten tomorrow, and the school she is supposed to be going to is probably the last school in Roanoke that I would ever consider sending her to. There's just no way. So we are looking into other options.