Monday, November 29, 2010

Charity Auctions

Most of you probably don't know that I sell squeaky shoes on ebay. Ta da! Surprise! I have been selling them for a few months now, and i's going pretty well. I thought I would let you all know that this week I will be using my little ebay business to raise money for the Hydrocephalus Association. 15%, or at least $1 per pair of shoes sold, will go to the Hydrocephalus Association. Of course, you all know why this particular nonprofit is important to me and my family, and I thought that since so many of my readers also have little ones with hydrocephalus, you might want to help me raise a little money for a cause so close to our hearts.
Here is a link to my profile on ebay where you will be able to see all my listings:
If you (or anyone you know) know a little girl or boy who would love a pair of adorable squeaky shoes for Christmas, please think about bidding on these, and support a good cause at the same time!
In case you're wondering how I started doing this, it was actually in an effort to help Avery. A year or so ago we decided to try out some squeaky shoes for Avery to see whether it could help her learn to walk with her heels down instead of stepping on tiptoes. We thought that maybe if her shoes squeaked when she stepped properly, she would be more motivated to walk properly. Everywhere I looked though, I could only find squeaky shoes for $25-$30. Then I found a place where I could buy them wholesale, so I thought "Why not?" and I've been selling them since then.
Avery, by the way, loves them. However, it didn't take her long to figure out that she could still make them squeak without putting her heels all the way down!! Brogan loves them too though, and I find that they're extremely helpful for keeping track of him when we're out, since he has a horrible tendency to run away...!
Anyway, go take a look at the shoes!! I have mostly sparkly girl's shoes this week, but will be getting some more boys shoes in the next week or so.
Note: The charity listings will be the ones starting tonight...the shoes that are ending today are NOT charity listings.

Friday, November 26, 2010


Avery helped us get the house ready for Thanksgiving by decorating the front door :) We made the wreath with cut outs of her hand prints, and the leaves were made the same way.
Avery took the job of securing the leaves to the glass very seriously... some of them got 4 pieces of tape!! I think she did an excellent job :)

I just wanted to say thank you to those of you who have already offered advice on the wheelchair/walker issue. I now have a much better idea about what's available, and I really like some of the ideas you've given us. I'm now looking into the kidwalk and rabbit mobile stander in particular, and I still think a wheelchair would be a good idea. I'm going to email some links to Avery's ABM therapist to see what she thinks, and Gabe and I need to sit down and talk about the pros and cons of the different options.
Avery sat with me at the computer while I was looking at some of the different walkers, etc, the other day. I told her that I was trying to find something new for her to walk with that would be better for her than her walker. She said "I think I'd like a new cane because my blue cane is old. I want a pink cane. Dark pink so that it will be red, because red is my favourite colour." Haha, sweet girl :) But somehow I don't think another cane is the solution!

Thursday, November 25, 2010


Avery and I started the day with a brisk 3 mile walk! We were going to participate as a family in the Drumstick Dash which raised money for the Rescue Mission, but in the end it was just Avery and me! But it was fun, and it was nice feeling super hungry and deserving of my thanksgiving feast when we sat down to eat this afternoon!
Avery in the stroller, keeping nice and warm with her hat and fancy "snow gloves" that Daddy gave her :)
It was pretty packed! For the first half mile or so it was sort of annoying because people kept on walking right in front of our stroller and I kept on almost running into their ankles. But that got better, and I was mostly able to walk as fast as I wanted to.
Walking along the pretend train track next to the real train track, with a train headed our way. Brogan would have been in heaven :) Avery loved it too, although of course it was rather loud so she had to express her excitement with her hands over her ears :)
Just about to cross the finish line :)
A man in a turkey costume with feathers made out of ties! It was pretty cool :) Avery thought he was great, and she told him all about how we were going to go home and have some warm hot chocolate because she was cold, but first we were going to pet a dog that wasn't barking :) Which we did :) There were lots and lots of dogs on the walk, and according to Avery, most of them loved her gloves :)
Thanksgiving feast at our house with the Symes (and Symes!) and Shabanas. Mmmm, mmm, yummy! Lots and lots of good food, and plenty of leftovers too! It is so nice to be able to share thanksgiving with such fun friends :)
Our super fancy center pieces :) Yesterday the children and I went out into our yard to collect pretty leaves, some of which we drizzled with glue and sprinkled with glitter, then we put them all together in these glass vases. Earlier in the week I helped Avery make 4 turkeys by tracing her hands and feet on construction paper. She's been excitedly and impatiently looking forward to Thanksgiving all week :)
All in all a very fun day!

I'm thankful for good friends and good food.

I'm even more thankful for my sweet little family and the absolutely joy each of them is to me.

I hope all of our American friends had a wonderful Thanksgiving too!

I have a couple more pictures to add, but I am too sleepy to do it tonight...check back later ;)

Tuesday, November 23, 2010

Advice needed

Okay, special needs community! We could use some ideas.
Avery loves her walker. It gives her a wonderful sense of independence and allows her to run around with the other children and go wherever she wants to go. If not for her walker, she would have to sit in a stroller or crawl.
HOWEVER, it is terrible for her legs. Especially now that she is no longer wearing AFOs. I put arch support in her shoes, because otherwise the inside of her ankles would pretty much be on the floor. She really probably does most of the work with her arms and shoulders, supporting most of her weight on her hands and propelling herself with her feet. Her knees stay together as she steps, her heels are usually up off the ground the entire time. The result is that her walker is probably compounding and increasing the muscle tone problems, etc, and putting even more stress on her bones and joints.
She does not want to lose the independence of having her walker. Neither do we want to take it away from her. We have thought about getting a wheelchair for long distances, since she would still be able to propel herself using her hands, thus maintaining a level of independence. The problem with that is that she doesn't want a wheelchair. A couple of weeks ago she had a day out with daddy, and at one point they were at Chick Fil A, and she was in the play area talking to some other children. They were apparently asking her about her walker and why she needed it. Gabe said it was a pretty interesting conversation to listen in on. She told them that her legs weren't broken or anything, so she didn't need a wheelchair or anything, and she demonstrated by getting close to the play equipment, letting go of her walker and taking the couple of remaining steps to the equipment without her walker. Then she started crawling up saying that she had great legs for climbing. We still haven't ruled out the wheelchair option, but I want her to feel good about how she gets around.
Anyway, the point is that we've been trying to think of something to replace the walker. Something which will give her all the independence of the walker without compounding her muscle issues. Something which will give her stability. Something she can get into and out of easily. Something which would still allow her to be upright. I don't know that the perfect device exists, but I am hoping that maybe somebody out there will be able to point us in the right direction.

Tuesday, November 16, 2010

Various appointments

Avery has seen a few different doctors and therapists in the past couple of months. Here's who she saw and what they had to say:
  1. Dr Clarke, the endocrinologist. You may remember that the developmental neurologist and the ophthalmologist both told me I needed to make an appointment with an endocrinologist after Avery's diagnosis of septo-optic displasia. SOD is often associated with hypopituitarism. The resident and Dr Clarke both looked Avery over and asked lots of questions, and concluded that at this moment in time, she seems to be perfectly normal and healthy with regards to hormones and growth, etc. They sent us to get blood tests to check hormone levels just to be sure. Avery was not happy about that. At all. All the way down to the lab she was saying "But I just want to go HOME! I don't need to have my blood tested because I AM healthy!" As soon as she walked in and saw the special little bench with the arm rests for drawing blood, she started crying and crying. But the nurse who drew her blood was super fast, I was very impressed, and it was over very quickly. The resident called me a few days later to let me know that everything came back normal, just as they had expected, and we just have to go back in a year to do the same tests again.
  2. Tiffany, the occupational therapist. I already mentioned how amazed Tiffany was with the progress Avery has made since she last saw her in February. She was extremely happy with how much she had improved with her hand-eye coordination, upper body strength and dexterity, problem solving and tolerance levels (as in, she doesn't immediately get frustrated when things don't work out perfectly anymore). We are going back the first week of December and we'll see whether we think we even need to see Tiffany at all anymore.
  3. Dr Brown, the physiatrist. Dr Brown is not very happy with us. We stopped giving Avery baclofen. Again. We've stopped putting Avery in AFOs. We've stopped trying to make Avery walk. We no longer make her use her quad cane, and we don't even really encourage the posterior walker either. We've stopped intensive stretching. We've stopped weekly physical therapy. We've stopped hippotherapy because we weren't approved for it anymore after quitting PT. Basically, we have gone against pretty much everything he has recommended. We have come to an agreement that we will spend the next 6 months really giving ABM therapy a real trial, and that if we haven't seen marked improvements by the end of that period, we will seriously think about going back to all of that.
  4. The Dentist. When we went to see the dentist in April, Avery seemed to be fine with it all, right up until the moment it was her turn to sit in the chair. She then freaked out, and the hygienist was unable to even get a look at her teeth! So I was concerned that it might be the same this time. But she was an angel! She sat in the room with me while I was having my teeth checked and cleaned, and while I was still busy with that, the other hygienist came in to get Avery, and to my surprise, Avery was perfectly to get up and follow her into the other room! Not only that, but she didn't mind getting into the chair and she was fine with everything that she asked her to do!! It was super cute listening to her conversations with the lady while she checked her teeth! She did such a great job, and came away with a bag full of prizes :) I had also promised her a treat if she did a good job, and she picked ice cream, so we went to dunkin donuts on the way home and got ice cream and hot chocolate :) It was really fun :)
  5. Sarah Roberts, the neurosurgery NP. Our whole little family took a trip up to UVa for Avery's routine MRI and neurosurgery appointment! Avery was absolutely AMAZING for the MRI!! It was the first time that she did it without screaming. Before we got there she picked Daddy to go into the machine with her, but once they were in the room, she changed her mind and I got to go in with her instead. She still was scared and didn't want to lie down, and when I lay down with her she wrapped her arms around my neck and held on tight the entire time. But the preparation part was the only part where she whimpered at all, once the scan was underway she was extremely brave! We pretended we were an underground train going into the tunnel, and she even talked to me very calmly a couple of times while we were in there and said how glad she was that we were friends there together :) She didn't loosen her grip on my neck even a tiny bit the whole time, so I could tell she was still scared, but she was so brave and good! And it only took about 4 or 5 minutes. She was excited to see the pictures when we got to neurosurgery, and we were too because they showed that her ventricles look exactly the same as they did in April! I didn't even realise for a minute that the two pictures on the screen were from two different occasions because they looked the same. So her shunt is doing it's job perfectly it seems! Hooray :)

Monday, November 01, 2010

Halloween 2010

On Saturday we got dressed up and went trunk-or-treating in our church parking lot :)
Brogan was a bird.
He was going to be batman, but his cape had apple juice spilt all over it, and he chose the bird anyway.

This is how birds fly :)

Avery chose to be a lion! For a little while she was saying she wanted to be a doctor, but then she remembered that we had this lion costume and nothing else would do :)


There were hotdogs and chips before the trunk-or-treating began.

Avery finished her food in record time and then had a terrible time trying to be patient - she was so excited to go trick-or-treating!!!

Some people went all out in their trunk decorating :)

Avery with her friend Paisley and Daisy :)

At last the waiting was over and we headed off to get some candy!! Avery said "Trick or treat!!" to everyone...
Brogan said "Please" and held out his bag when I asked him to say "trick or treat" :)

Enjoying some of their loot on the way home :)

Like his sister and brother before him, Oliver was a lion for his first halloween :) He slept in his carseat the whole time we were at the trunk or treat, so I took a couple of photos of him after we got home.

On Sunday evening we had the Symes and the Doroughs over for dinner, and we handed out candy to all the trick-or-treaters who came by :) There were lots of fun costumes, and by the end of the evening we only had a handful of candy left in the bucket :)