Wednesday, February 16, 2011

Unicorn Party, Part 3

Presents!!!
This is a happy face :)
Adam gave her a princess purse filled with nail polish!
He liked watching her open it!
A beautiful unicorn from Kayla!
A princess colouring book and a slinky from Sam!
I love all the faces in this photo :) What is it, what is it???
A PIG!!! The story behind this is that a week or so before the party, Michelle asked me what Avery wanted for her birthday, so I asked Avery. She said "Ummmm....I think I'd like a pig toy. For my hand. So I can look like a pig." So I told Michelle this because it was too funny, and Michelle actually managed to find exactly that!!! She was so excited to see it :) hahaha
Another birthday wish come true - Cars toys from Alex and Jack! 
A princess game wand from Luke! She has played with and enjoyed it since the party, but at the time....
...she was more excited about the m&ms she found in the bag!!!
Kayla giving her a hug goodbye :) Such sweet little friends :)
Pretty birthday girl :) With one of her presents from Emma and Anna!! 
Showing off her pretty name necklace from Addie and Callie!
Even after everyone had gone home, Avery still sat right here at the table and played with all her new toys :) 
The unicorn had shoes and a hair brush! Oh happy day :)
A Why Writer!
Birthday loot :) But something's missing...
Brogan is in love :) Even Avery was calling them "Brogan's cars" by the end of the day, even though they are hers! He slept with them that night... :)

Thank you to all of Avery's sweet friends for your thoughtful and super fun gifts!! Avery has discovered that being five is not nearly as bad as she thought it was going to be, because she got a lot of fun new stuff :) haha. Although, we drove past a park on the way to her 5yr check up yesterday, and she said that she wanted to play at a park, and then she sighed and said "But...I'm too big to play at the park now..." So I had to reassure her that she was still little enough for parks :) 
In other news, Avery is 45 inches tall, weighs 42lbs, and we have an estimated ship date of February 23rd for her super cool new wheelchair!!! Wheeeeeeeee!! 

Unicorn Party, Part 2

The Cakes!
Unicorn horn cupcakes
And the Unicorn Cake!!
Pheobe wanted to get her hands on that cake so badly...!! That, and she didn't appear to know she had a flower sticker on her forehead :)
Avery loved her cake! When I showed it to her when she got home from school on Friday, she gasped and said, "It's beautiful!! Can I eat it now??" Then, whenever one of her party guests arrived, she'd say, "Hooray! Now can we eat my cake??" Also, even though I told her that I decorated it, she was talking about it on Saturday and told me, "When I went to school, the cake aliens came and decorated my cake like a unicorn!" (Also, note the part of the cake missing from the back of the candle cake...Brogan somehow managed to sneak several nibbles as we were getting ready that morning!!)

And what is all this excitement about???

...Daddy's contribution of a happy birthday banner flown by helicopter around the room :)

Avery had to have the horn part of the cake :)

Everything was pretty quiet for a few minutes! I think that was a sign that the cake was rather tasty :)



Daddy flew his helicopter around a little bit more :) 

Monday, February 14, 2011

Avery's Unicorn Party, Part 1

Gabe and I decorated the night before the party, and the kiddos were pretty excited when they woke up in the morning and saw all the fun stuff :)
By 1pm, friends started arriving, and the fun began :)
We made unicorns out of socks, pipes, ribbons, googly eyes and pipe cleaners.
Most of the little ones were pretty excited about making their own unicorns, so it was fun :)
And I think they turned out pretty cute :) Here is Luke posing with his unicorn and his Pass the Parcel prize.
I happen to find this picture hilarious!! It was time for Sam to leave. He didn't want to go, and he was crying and whining. In the middle of that I asked him to smile so I could get a picture of him with his unicorn, and this  is the face he made! hahaha
Some of the girls with their unicorns :)
I was going to get a picture of everyone together with their unicorns, but I forgot :(
Pass the parcel!
Jack's turn to rip off a layer!
Addie was the lucky winner -she got a bubble gun :)

Happy Birthday!!

Avery is...
5 today!!!!
Happy Birthday Angel Girl!
Party details coming soon....

Tuesday, February 08, 2011

30!

At the end of January, Gabe turned 30!!

We had yummy coconut cake. (Up until about 30 minute before this, Gabe had had a migraine, so he said he didn't want any pictures taken of him.)
It was delicious cake :)

I had a surprise get together planned, and some of our friends were able to make it! They all showed up at the bowling alley early so that when we arrived they were ready to shout Surprise :) We bowled a couple of games and ate cupcakes, and Gabe had no idea it was coming :) Hooray! After bowling, a few of us went over to the Schwendiman's house and played Apples to Apples too. It was a really fun evening, thanks everyone :)

Yep, top quality photo, I know!! Unfortunately, this was the closest thing to a group photo I remembered to take...oops!

Sunday, February 06, 2011

Aging with CP

I am convinced that ABM is the right thing for Avery. I was pretty sure when we started seeing her doing new things after our second sessions last summer, but I have become absolutely committed after learning more of the philosophy and ideas behind the method, and especially after spending a lot of time learning more about the long term effects of CP on a body.

Spasticity and increased muscle tone are just symptoms of a problem whose root is actually in the brain itself, so it seems to me that just just trying to "fix" the muscle problems with uncomfortable braces and painful stretching is like trying to eliminate the smell of a rotting fish by spraying the room with perfume. It might smell better temporarily, but the fish will just keep on getting more and more rotten, so when the perfume wears off, the smell will be worse than ever.

Of course, we have only just started researching all of this recently. It appears that there really haven't been many studies done on the long term effectiveness of aggressive PT on CP children, but the few things that we have found have not been encouraging.

This article has this to say:
Most treatment and research is done on children with cerebral palsy. Little research has been done so far on aging and cerebral palsy.[...] Studies have also shown that adults that had a large amount of childhood physical therapy (4 to 5 times a week) over a long period of time (4 plus years) have negative lasting effects with aging and cerebral palsy.
Here's another one:
Adults with CP experience musculoskeletal problems and loss of function that non-disabled adults do not experience until much later (IOM). A study indicated that 75% of individuals with CP stopped walking by age 25 due to fatigue and walking inefficiency (Murphy). Another study on young adults with CP found clinical evidence of arthritis in 27 % of subjects vs. 4% in the general population (Cathels). These challenges result in chronic immobility, harming bone health.
Also read this. It makes you realise how little medical attention is routinely given to CP patients once they reach adulthood.

Of course, this has all been a lot to think about, but the one thing I am sure of is that while the ABM may be taking a slower route towards independent walking, it is a much healthier route, and will result in a healthier and more comfortable gait for Avery once she does reach that milestone.

Did you know that even until the 1800s, bloodletting (ie, cutting you and letting a certain amount of blood drain from your body) was a pretty standard treatment for anything from the flu to diabetes? It seems crazy now, but they had it down to a science back then, and some people swore by it. I have begun to think that maybe the current standard for treating CP during childhood will some day be looked back upon in a similar way. 

Saturday, February 05, 2011

Question for Adults living with CP

We started Anat Baniel Method therapy with Avery last summer because her physical progress had seemed to plateau with just the traditional PT. We started seeing wonderful developments within the first few sessions. Her traditional therapists and doctors have had a hard time with our decision to pursue ABM, particularly because it has meant that we are taking a step back on the whole walking front, and are not being so aggressive in our insistence that she get up on her feet and walk. The reason for this is that she needs to "unlearn" the damaging gait (heels off the floor, walking on the inside of her feet, knees together.) that she has been forced into, so that she can then learn how to walk in a more comfortable and natural way.
I do not personally know many adults with CP, but of the three I do know, all three of them learned how to walk as children with the help of well-meaning therapists and doctors. One of them lost the ability to walk in her thirties when it was discovered that her gait had caused bone spurs to develop in her spine which almost left her quadriplegic. As it is, she has a titanium rod in her spinal column and she will never be able to walk at all again. My husband's high school friend also grew up with CP and walked, but is also now in a wheelchair full time. A new friend introduced herself to me through my blog this weekend, expressing her concern about Avery's school PT's insistence that she should be walking even though her gait is so harmful. She is 26 and has already got to the point that her gait has made walking extremely painful. The fact that 100% of the adults living with CP who I know personally have lost the ability to walk has me more than a little concerned. I am beginning to wonder whether the well-intentioned emphasis on forcing CP children walk as soon as possible might actually cause more harm than good in the long term.
If you are an adult living with spastic diplegic cerebral palsy, I was hoping that maybe you could share a little of your experience with me.
  • Did you learn to walk as a child through some combination of traditional physical therapy, orthotics, intensive stretching, botox, valium, baclofen, walkers, etc, etc, etc? 
  • Are you still walking today? 
  • Does it hurt to walk more as you get older, or not? 
  • If you have partially or completely lost the ability to walk, when did this happen, and what was the cause?
If you don't want to comment publicly, please send me an email at josephineart@gmail.com.
Thanks so much!

UPDATE (Sep 2012) - Thank you to those of you who have taken the time to respond!! I appreciate it so much, and will continue to appreciate any future responses, so please take the time to share if you can! Thank you <3 p="p">

Wednesday, February 02, 2011

Not horrible

Well, the IEP meeting wasn't nearly as bad as I had been expecting. It was actually on Tuesday afternoon - I spent all morning on Monday thinking that it was Feb 1st, but of course it wasn't! But it was good, because it meant that I was able to get in touch with Catherine (ABM therapist) once more before the meeting to let her know of Kirsten's plans for Avery. Catherine sent an email to both Kristen and I explaining again the reasoning behind wanting Avery to walk as little as possible. In fact, I think I will copy and paste the letter here because it does a good job of explaining why what probably appears to be a step back is actually very beneficial.

Dear Kristin, dear Josephine,
My apologies for the delay in getting this email to you. I hope it is not too late for tomorrow's IEP.
I just wanted to write down my goals for Avery and how I believe we can meet them and what we should avoid doing.
Our goal is to allow Avery to develop a walk that can be sustained even when she gets older and bigger. The ambulation patterns she has developed so far cannot be sustained into adulthood, as I am sure Kristin has seen over an over in her experience with students.
Because we are counting on Avery's neuroplasticity to design our new walking pattern and because neuroplasticity is competitive, whatever pattern is used the most will eventually win or at least significantly delay the construction of the new pattern. This is why, while we are working on developing the new pattern, we would ideally like for Avery to not walk at all. I understand that it is not realistic, however, the closer we get to not walking until the skills that Avery needs to walk well are in place, the better.
So, Kristin, I really like the idea of pushing Avery in the buggy and, when she find one, have her use the W/C for long distances. I also get your point that a walker is better in the playground, because the W/C does not work there, and because the walker gives Avery a chance at some very nice social interactions as her peers help her navigate the obstacles.
I do not understand, however, the use of the quad cane in the class room. I thought, from our conversation, that you wanted to have a look at it in order to rule it out. I seem to remember that we talked about allowing Avery to crawl within the classroom, or use the walker to go to the restroom because of hygiene concerns.
I have not seen Avery with the walker, but my pediatric PT mentor, who is a trainer in the Anat Baniel Method and referred Avery to me, saw her in her quad canes, and thought they would be detrimental to Avery's progress. So, is there any practical way for Avery to move about in the classroom with her walker only?
As you know, I am very aware of how difficult it is to ensure that Avery gets all the modifications she needs within the constraints of the school environment, but I believe it would make a big difference for her, and for your progress if she did not use her quad canes at all.
Please feel free to discuss this further with me. I really appreciated your including me into this process and hope that we can find a solution that works for everybody.
Sincerely,
Catherine
Catherine Wycoff, PT, DPT, GCFP, ABMCP

Kristen did get this email before the meeting, which meant that when we got there she had taken the parts about the quad cane out of the IEP. So that was good. She doesn't seem happy at all about our decisions though, and from a traditional point of view I can understand how this would seem like a poor choice. She made a point of emphasising in the IEP that we, as Avery's parents, had made the decision to require less walking from Avery, and that this wasn't her idea. 
We let her know that Avery should be getting a wheelchair in the next few weeks. Fingers crossed that it won't take longer than that... Kristen says that we shouldn't get our hopes up about it arriving that soon - she says she's never know them to arrive in less than 8 to 12 weeks. This is what I have heard before, but when I asked the woman at Tender Hearts about how long it might take, she said that it sometimes takes up to 3 weeks for the company  to ship the wheelchair after it's been ordered. So  I suppose we'll just have to wait and see. This is the one we're supposed to be getting:

It's the Quickie 2. It won't look quite like this of course, because we're ordering it through an Anthem approved retailer which means that I had to go through about 4 pages of options. I still don't know why everything has to be so complicated. I swear I must have aged about 10 years in the last 3 weeks with everything I've been worrying about and trying to figure out. This wheelchair should be pretty great though. The one last thing that is frustrating is that even though it's "lightweight", it still still weighs almost 30lbs, which seems like a lot for a child who only weighs about 42lbs to be hauling around. That, and I still don't know how much it's going to cost....