Monday, January 31, 2011

IEP meeting

*sigh*
So...this afternoon I have a meeting with Avery's teachers and therapists to discuss her IEP (Individualized Education Plan). To say I am not looking forward to it is sort of an understatement. I'm sort of dreading it. Because I am going to have to once again fight for what I think is best for Avery. Because, once again, her school PT and I do not agree at all.
*sigh*
So even after talking to Catherine (Avery's ABM PT), Kristen (school PT) decided that a good compromise between us not wanting Avery to walk and her wanting Avery to walk would be to make Avery use her quad cane every day at school in addition to her walker.
Yep, this is going to be a fun meeting........

Monday, January 24, 2011

My Grandad

Brogan and Avery with their Great Grandad Giles, May 2010.

This past Sunday, January 23rd, my Grandad died.

He was wonderful man who made my childhood magical with his jet black hair (!), funny songs, stories about pet pterodactyls, and his willingness to let us comb his hair over his eyes and put his glasses back on.

No one could ever have felt more loved than he always made me feel.

Truly the loveliest Grandad anyone could hope for.


I am grateful to know that his death was peaceful, that he was ready, and that the majority of his family was able to get there to say goodbye before he died. I am sad that I was not able to be there. I am surprised by the intensity of my sadness, since I knew that this day was coming, and I thought I was prepared for it. I have lived a long way from my family for over 8 years now, but even so, I miss him now that I know he's not there anymore. That he won't be there the next time I go home. I feel a long way away from home, and a long way away from my family.
I am comforted to know that he is no longer burdened by his weakened mortal body, that he is now pain free and clear-minded. It comforts me to think that he can now watch over me and see my children grow. I am grateful that two of my children were able to meet him, and I hope that they will be able to remember him, at least a little bit. I wish that they could have known him the way I knew him. Although I will never again see him during this life, I do look forward to seeing him again after I leave this earth.
I love you Grandad.
I will see you again.
(We mustn't get excited...)

Monday, January 17, 2011

Wheelchairs

Remember a while ago when I was talking about the fact that we needed to figure out a new mode of transportation for Avery? (here) Well, we have come to the conclusion that the best option really would be a wheelchair.
I spoke to Avery's school PT the week before last, and we talked again about the fact the Avery shouldn't be walking to and from the cafeteria. Emphasis on "again" because I already talked to her at the beginning of the school year and told her that very should not be walking any long distances in her walker, and yet when we got her 9 week report card it said "Avery is doing a great job walking one way to the cafeteria every morning" as if that would be something we'd be happy about! So I spoke to her again, and she said "Well, I really think that it's important for Avery to be learning to keep pace with her peers." I told her again that Avery's speed in her walker is not the issue - she can go really fast. In fact, one of the problems is that she goes too fast most of the time and her heels never touch the ground. Frustrating. For some reason, Avery's school PT and I have had the hardest time seeing eye to eye in the 2.5 years we've known each other. Back when we were pushing Avery to use her crutches and quad cane, the therapist didn't want her to use them at school because they weren't safe enough, and insisted that she should be using her walker instead, and now that we are trying this new approach and trying to avoid pushing her body into doing things it's not ready to do, she is still insisting that she should be using her walker, not a wheelchair.
That's right, she says that she cannot in good conscience write a letter of medical necessity stating that Avery needs a wheelchair. Because she can walk. For short distances. In a posterior walker. On her toes. With her knees knocking together.
Crazy?
Why, yes. Yes it is.
So she gave me a whole spiel about how Avery should be pushed into walking progressively longer distances, and that without a letter of medical necessity a wheelchair would cost us thousands of dollars and that even if we could get medicaid to pay for a wheelchair for Avery, most places in Roanoke don't even accept medicaid anyway, yada yada yada.
Rubbish.
I personally know of at least two CP children who can walk without any assistive devices who still were approved for a wheelchair because their CP makes walking long distances difficult. Back in 2009 when Avery was walking better than she is now, her PT asked whether we wanted to see about getting a wheelchair for her. I instantly said no, foolish woman that I am! I was still in the mind frame that we should be making Avery walk, and I thought that a wheelchair would just be an excuse for her to stop walking. Anat Baniel therapy has changed my mind about that. The way that Avery walks now is destructive. It aggravates the very issues which make walking so difficult for her in the first place. I have a sweet friend who grew up with the same kind of CP as Avery has, and went through all the traditional therapies/surgeries which are normally recommended. She walked independently until she was in her thirties, and then the damage which her gait had been invisibly doing to her spine suddenly became apparent and she will now never walk again.
There is no denying that Avery's gait is extremely damaging.
ABM therapy is all about quality of movement. It is about helping Avery learn how to comfortably move her body, the way that most of us learn so effortlessly and naturally as babies and toddlers. It is about teaching her brain to communicate with her muscles, and helping her to realise that movement has purpose, and that it should be enjoyable. It is about moving naturally and comfortably. It is not about forcing her body to do things which it is not ready to do.
A wheelchair will allow Avery to still enjoy the independence of going where she wants to go by herself, and will also allow her legs to calm down and stop working in a way which is damaging and destructive. It will mean that in between appointments she is not undoing the good that her therapy is doing. Ultimately, it will mean that when she does walk independently, it will be as comfortably as possible, rather than as soon as possible.

As for the wheelchair itself. Obviously, the sooner we get one the better. If we were able to get Medicaid to cover the cost (which I think is probable, since she needs one, her PCP would write a prescription, and her therapist would write a letter of medical necessity) then it would take up to 6 months to get it. I have heard that you can sometimes get "loaner" wheelchairs for the interim. My friend Christine also said that with her wheelchair, if there's ever a problem with it, it can be really difficult/expensive to get it fixed if it's not covered by medicaid. Especially if it's custom made. Also, if we got it through medicaid she would be properly measured and fitted for one.
My friend Patty also let me know about FREE, which is a non-profit whose mission is "to help provide mobility related rehab equipment to enhance independence and improve quality of life." I've been looking at the whole application process for that too.
It's all a lot to think about. Last week I was feeling a huge weight of stress and pressure and worry. But I really feel that we have made the right decision, and the only thing to do now is to figure out the best way to actually get hold of a wheelchair which will be ideal for Avery.
The thing with Avery is that she's not so physically involved that she's going to require custom made support cushions and all the fancy bells and whistles. She just needs a manual chair that she will be able to sit in and propel by herself when we go out. She will still be crawling at home, as she always has. The chair will go with her to school, so it will need to fold up and be reasonably lightweight so we can get it on and off the school bus. It will need to be easy for her to get into and out of by herself so that she can still enjoy the independence of being able to get down and crawl around whenever she wants to.
Here is the chair I had decided on:



It weighs less than 30lbs, folds to a width of 11", has flip back armrests and swingaway, detachable foot rests. I also found it for $280!!
However, after measuring Avery we realised that she needed a seat width of 12", this one was only available at that price in the 14" seat width. The company that makes it has apparently discontinued the 12" model, so the buying options are much more limited.
I have found the 12" somewhere else for $400, which is the same price as this one:

It has more options for everything from seat width/depth, colour, upholstery, arm type, casters, wheels, front rigging, knee-to-heel range, etc, etc. However, it weighs a couple of pounds more, the weight capacity is half of the other one (still 125lbs though), it only has a 5 year warranty (rather than limited lifetime), and I can't find anything that says how well it folds up.

So I just don't know. Decisions decisions.
I'll be seeing our PCP tomorrow for Oliver's 4 month check up, so I'll ask him about a prescription then. Then we really need to make a decision about what to get/how to do this.

Tuesday, January 11, 2011

Silver Medalist

Avery got 92 votes in the Bubblecake contest, which earned her second place and 4 free cupcakes :) She (and I!) was very excited to go and collect her reward! She even decided the day before what kind of cake everyone was going to get :D

She had decided that she wanted to get a "chocolate and banilla" cake, so it was a good thing that they had these "Black and White" cupcakes in on Saturday when we went! It was exactly what she wanted :) For the first couple of minutes she just licked the frosting like this :) She was a very happy girl!

Once Avery had her cake, she didn't seem to mind so much what the rest of us ordered, which meant that I could get that divine (or perhaps devilish??) Palm Beach Brownie, rather than a peanut butter cake, which Avery had told me to have :) Gabe got the Creme Brulee, and then the fourth was Cheesecake, which Gabe and I took with us on our date that night and shared while we watched True Grit :) (really excellent, until the last 2 minutes, but a little too graphic for my liking in the violent parts...)

This was mine, all mine :) Doesn't it make your mouth water just looking at it????

I shared some of my cake with Brogan (I must really love him!), and I think Gabe shared with him too, but he was actually more interested in the Rody horses and the chalk board. And exploring. And Oliver just sat there looking cute :)
Avery managed to eat her entire giant cupcake all by herself before we left! I was surprised! This from a girl who is almost as "health conscious" as her Daddy! Today when she got hurt I gave her a chocolate chip cookie (my children insist that chocolate is the only thing that makes them feel better when they get hurt....) and she ate half of it and then gave it back to me saying, "I'm done, because this has too much chocolate in it, see?"

Sunday, January 09, 2011

Shoes

If you are on facebook, come on by and check out our new page!


Thanks :)

New Year's Day celebrations :)

It was a gray, rainy day for our walk this year!

Here is Brogan running at Amber, who is waiting to catch him :) It makes me giggle :)

Here he is running back again! That boy has so much energy! I don't know how he does it, especially since a full night's sleep is a rarity for him!!

Brrrrr :)

Aww, brother and sister holding hands :) Cute :)

Do you think that umbrella is big enough for Brogan?

Hmm, I'm not sure.... :)

Letting Avery have a turn, but not for long :)

At the end of our walk, we played at the park for about 2 minutes!

It was getting wetter and colder...

...and hot chocolate was sounding more and more like a wonderful idea...

...so we headed back to our house :)

Warm bread rolls, chicken and dumplings, hot chocolate with candy canes, marshmallows and whipped cream, pigs in a blanket, chips and dip, magic cookie bars, pumpkin pie.....it was yummy :)

Two very interesting conversations, I'm sure ;)

Kiddos watching a movie and causing chaos downstairs :)

Sam insisted on having his photo taken whenever he saw me taking pictures :)


Remote control helicopters...

The little ones were fascinated :)

"woowww!"

Phoebe more wanted to get her hands on the camera than have her picture taken....oh well :)

It was hard for Brogan to share his (and Avery's) new train track... Poor boy! hehe.

We had a great time :) By the end of the evening, Avery piped up and started telling people "You have to go home now. This isn't your home, this is our home, and it's time for you to go." Hahaha!

Thank you to our sweet friends who were able to come out and share the day with us!

Wednesday, January 05, 2011

Vote for Avery!!!


Avery is currently in third place in a competition to have a cupcake named after her at a local bake shop. Bubblecake Bake Shop is only the best cake shop I've ever been to, and they will create a brand new cupcake for the winner, put it on their menu for the rest of January, and give the winner a free dozen cupcakes. Avery would be so happy if she won, not to mention how much I would enjoy sharing her cupcakes with her ;)
If any of you are on facebook and have a couple of spare minutes sometime today before 2pm EST, would you mind popping on over to bubblecake's facebook page, clicking on "like" and then voting for Avery by liking my comment here? Thank you so much!