Wednesday, April 30, 2008

Meet Molly!

Had to share this. Check out the adorable pictures below. awwww.








I've written articles over the years about horses who survived amputation
surgery. There was Boitron, the California Thoroughbred stallion who could
service mares after amputation surgery. There were Dr. Ric Redden's dramatic
cases of founder survivors who galloped around his paddock on artificial feet
with 'transplanted frogs'.

Dr. Chris Colles had the never-say-die Appaloosa in England with the
spring-loaded foot. And who can forget that paint yearling in India? Or the
landmine-maimed elephant amputee in Thailand? Longtime Hoofcare and Lameness
Journal readers will remember them all.So when I first heard that a pony had
survived amputation surgery at Louisiana State University's (LSU) equine
hospital, I didn't run to the keyboard and beg for photos. A few weeks later I
did, though.

Meet Molly. She's a gray speckled pony who was abandoned by her owners when
Katrina hit southern Louisiana. She spent weeks on her own before finally being
rescued and taken to a farm where abandoned animals were stockpiled. While
there, she was attacked by a pit bull terrier, and almost died. Her gnawed right
front leg became infected and her vet went to LSU for help. But LSU was
overwhelmed, and this pony was a welfare case. You know how that goes.But after
surgeon Rustin Moore met Molly, he changed his mind. He saw how the pony was
careful to lie down on different sides so she didn't seem to get sores, and how
she allowed people to handle her. She protected her injured leg. She constantly
shifted her weight, and didn't overload her good leg. She was a smart pony with
a serious survival ethic.

Moore agreed to remove her leg below the knee and a temporary artificial
limb was built. Molly walked out of the clinic and her story really begins
there.'This was the right horse and the right owner,' Moore insists. 'Molly
happened to be a one-in-a-million patient. She's tough as nails, but sweet, and
she was willing to cope with pain. She made it obvious she understood (that) she
was in trouble.' The other important factor, according to Moore, is having a
truly committed and compliant owner who is dedicated to providing the daily care
required over the lifetime of the horse.Molly's story turns into a parable for
life in post-Katrina Louisiana. The little pony gained weight, her mane felt a
comb. A human prosthesis designer built her a leg.

'The prosthetic has given Molly a whole new life,' Allison Barca DVM,
Molly's regular vet, reports. 'And she asks for it! She will put her little limb
out, and come to you and let you know that she wants you to put it on. Sometimes
she wants you to take it off too.' And sometimes, Molly gets away from Barca.
'It can be pretty bad when you can't catch a three-legged horse,' she
laughs.Most important of all, Molly has a job now. Kay, the rescue farm owner,
started taking Molly to shelters, hospitals, nursing homes, rehabilitation
centers. Anywhere she thought that people needed hope. Wherever Molly went, she
showed people her pluck. She inspired people. And she had a good time doing
it.

'It's obvious to me that Molly had a bigger role to play in life,' Moore
said, 'She survived the hurricane, she survived a horrible injury, and now she
is giving hope to others.''She's not back to normal,' Barca concluded. 'She's
going to be better. To me, she could be a symbol for New Orleans itself.'This
week, Molly the Pony, a children's book about the pony who has already inspired
thousands of people around New Orleans, has been published.It's not a book about
amputation or prosthetics, it's a book about people and ponies. But the photos
you see here are from the book.Maybe Molly won't make the vet textbooks, but she
might reach more people from the pages of this book for children. If you know a
child, a library, a hospital, or maybe a therapeutic riding program that can use
a lift, here's a book that can do that. And you can explain how the leg and hoof
work!

HOW TO ORDER: This book is an oversized, square 'laminated' (so it wipes
clean) hard cover book. Hoofcare Publishing is proud to offer it for sale to you
at the price of $15.95 each plus $6 post. A portion of the sales price will go
toward Molly's fund. To order, send check or money to Hoofcare Books, 19 Harbor
Loop, Gloucester MA 01930. Telephone orders to (USA) 978 281 3222. Fax orders to
(USA) 978 283 8775. Email orders to books@hoofcare.com. Visa or Mastercard
accepted; please supply account number and expiration date. When ordering,
please give phone and/or email details.You will LOVE this book--and Molly!



Tuesday, April 29, 2008

Update

The kids are feeling better. Maxy now has a shallow and wet cough and a clear runny nose. Yuck. Hopefully this is the last one of the season. No fever!



Madeleine has avoided the cough and runny nose but it may be heading our way soon.



As for the questions for Greg:

1. Is Madeleine a candidate for a Gel Liner leg? Why or why not, are there benefits to that design? She is potentially a candidate but that is no reason we should consider it for the next leg. The benefit of having a pelite liner is that it is more adjustable for growing kids, it is also more expensive in that it costs a lot for the prosthetist to make (in time). Adults like this leg because it is easy. Madeleine could be a good candidate as she grows as her limb is very uniform in shape.

2. When does Greg foresee Madeleine getting a new leg? How can we prepare for that? Fabric covering? Madeleine will most likely need a new leg after 12 months of use for the first one. That is we can expect a new on in September or sometime this fall. We can go to the fabric store and pick out a few fabrics we like and discuss them with Greg. If we want to go that route.

3. Summer. Sand. Swimming. Liners and covers? One thing that makes Greg (and Dr. Mosca) great is they believe in letting kids be kids. Greg's response to summer with a prosthesis is: Go For It! She has to be a kid, don't worry about it. If it gets wet, let it dry. If there is a problem give him a call.

4. Discussions around leggie being 'broken' ? Experiences with other children?
He said that he hasn't had to address this with other kids but he thinks she is becoming more aware of her body and that she is exploring differences.

He actually didn't need to adjust the length. Even though Madeleine appears taller we think she has grown in her femur so the prosthesis is still okay. He did adjust the liner to take some pressure off of the outside part of her knee. Because her knee is 'valgus' (turns out or knock kneed) as she grows it will put more pressure there. The new leg will accommodate this and in a few years she will have a brief surgery to correct the valgusness again.

Sunday, April 27, 2008

Questions for Greg

The past few days have been a bit of a challenge in the Meyers' household. First Max came down with a fever and then and then we noticed a bit of a cough. Not any cough but a barky and deep cough. The cough was sporadic, as was the fever, at first. On Saturday I took Max took the after hours clinic at Childrens. He has a respiratory viral infections. He may have a fever a few more days (but today it is better) and soon the cough will continue and the nose will start running. The worst part.... waiting for Madeleine to get it. We didn't have to wait long. Last night Madeleine woke up with a fever. It will be a few days until she feels better.

Why am I talking about this?

Because we have an appointment with Greg on Monday morning. Greg is Madeleine prosthetist. I've been noticing her walking with a bit of a hobble, as if one heel was slightly shorter than the other. This means she has grown a bit taller and therefore needs her leggie adjusted. I have also noticed that she has been falling. Five times in one morning on the way to school. All of these little indication mean another appointment at Childrens.

Today I have decided to write some questions for Greg in order to get more organized.

1. Is Madeleine a candidate for a Gel Liner leg? Why or why not, are there benefits to that design?

2. When does Greg foresee Madeleine getting a new leg? How can we prepare for that? Fabric covering?

3. Summer. Sand. Swimming. Liners and covers?

4. Discussions around leggie being 'broken' ? Experiences with other children?

Tuesday, April 22, 2008

Out to Dinner

Recently I was asked what is one of the things that I consider the most fun. My answer? Going out to dinner with my family.

Before Michael and I had children we seemed to go out to dinner constantly. It was so easy. We could go anywhere. For this reason I don't think we truly appreciated the luxury.

Now that we are a family of four it is way more complicated. Michael and I make every effort to eat together as a family at home. And we enjoy it. We feel it is important to eat together as a family and all that.

With that being said, we still try to do a nice family dinner out at least one to three times per month. We don't go out much but when we do we have so much fun! What is it about going out to eat that makes it so much better than eating at home. Um, not cleaning up!

A few weeks ago I captured a few pictures at our favorite pizza restaurant, Tutta Bella.


Madeleine getting ready to take her pizza down!
Yep, when we go out Mommy and Daddy let us have Root Beer!

Mouthful of Pizza.
Mmmmm, root beer.
Can I have some more please?
I love Pizza!!!!
Yummy.

Strawberry gelato for desert.


Daddy makes the same face! Until he got the bill....

Words- Max

Max says all that Madeleine says with some funny phrases. Here are my favorites:

Ah have it (I have it)
Ah want it
Ride it (referring to a bike)
frow it (throw it)
see it

And don't forget that an -ee is put on almost all nouns:
sharkie
bikie
cokie (diet coke)
mukeek (music)
shirtie
poopie

Words- Madeleine

Did you know that at one point we were worried that Madeleine may be delayed in language? It is a twin thing. Many twins develop their own language and thus get a bit behind in joining the rest of the world. Madeleine also went through MAJOR surgery and was in a body cast when language takes a huge developmental jump. I talked with her teacher last week and she admitted that there were some concerns but that Madeleine seems fine now and if I was worried they would do a word count. She said she should have between 25-30 words now. I know she does but thought it would be fun to count them anyway. This will probably be edited many times as I remember them...

Phrases:
See ya soon
buh-bye... (car, fun, TeeTee, Brooke, Grandma etc.)
Hi Mommy (daddy, Brooke, Tee Tee, Logan, Doctor)
No Dress!
Sank you (thank you)
Yor welkie (your welcome)
all done
pittee col (pretty cool)
nigh-night

Words:
Vackie (vaccuum)
nope
beeg (big)
suck (truck)
car
crows or caw caw
juice
wawer (water)
mukik (music)
sing
thingy
bankie (blanket)
helper yeg (helper leg)
leggie (another word for helper leg)
feet/foot
toes
knees
arm
bebo (belly button)
eye
eye bwow (eye brow)
yashes (lashes)
nouf (mouth)
teeth
bwush
bed
up
down
boon (ballo0n)
bwoom (broom)
mop
dee-et coke (diet coke)
mint
mamop (lolli pop)
boyell (water bottle)
gregie (the prosthetist)
book
binkie
song
chair
clicky (clicking the latch on her car seat)
self (as in- do it myself)
bike
fish
cow
doggie
kitty
pazzi (pizza)
sosa (sofa)
chicken
noodles
soap
bubbles
clippy
friends
school
mouse
house
sheep
duck
horse
food
nackie (snack)
nap
morning (as in, morning Bob, to the neighbor)
stairs
shirts
shorts
skirt
pants

and there's more- guess I don't need to worry

Friday, April 18, 2008

Public or no?

Okay, so I'm sitting here doing a search of Fibular Hemimelia blah blah blah and I come across this....

http://themoonsofthebirth.offshore-ile-maurice.mu/2008/03/26/hemimelia/

WTF? Those are my children!!!! What's is up with this site? I cannot figure it out.

Please help!

Edited:
The original title of this post was WTF. I'm stuck. I just googled "Fibular Hemimelia blogspot and I'm the 7th link. Seventh. This opens a new can of worms.
  • Should I stay public?
  • Do I want people to find me?
  • Am I exploiting my kids?
  • Am I too open? To personal?
  • Is it beneficial to the whole of society?

I'm not making sense. I'm feeling overwhelmed. I'll be back later....

Leggie Dreams

This morning Madeleine woke up from a bad dream. She was talking in her sleepy state and kept saying, "leggie, leggie?" I told her that her leggie was in her bedroom, that we took it off so she could go nigh-night and if she wanted we could put it on. Then she said, or asked, "brokie? Leggie brokie? and she seemed upset. I assured her that it was not broken and if she wanted to see it I could go get it. She was satisfied and went back to sleep.

Tuesday, April 15, 2008

Prosthesis.... Or is it Prosthetics?

Some people know that I'm a bit of a grammar hound. I'm not ashamed to admit this. In fact, I'm quite proud of it. I actually enjoyed diagramming sentences in high school. I liked learning the French language because I loved learning a new grammatical puzzle, if you will.

If you know me you know that I hate it when signs are incorrect. Particularly with apostrophes. You don't need an apostrophe when you are not writing a contraction or showing possessive. For example...

Don't (apostrophe in place for the 'o'.... do not = don't)

Suzie's dog (whose dog? Suzie's)

The Kids' bikes (multiple kids and their bikes- showing possessive)

Plurals do not get apostrophes...

the dogs (more than one)

the dog's bone (possessive as to whose bone)

Get it?

The difficult one (and the one that drives my students into an angry and argumentative fit is...

Its and It's

It is = It's (contraction)

Its (plural)


I know, I know....


Okay so let's talk prosthetics vs. prosthesis

Prosthetic is an adjective describing the noun. She has a prosthetic leg. Leg is the noun and prosthetic modifies it or describes it.

A prosthesis is a noun. She has a prosthesis.

If you wikipedia Prosthesis you get this...

"In medicine, a prosthesis is an artificial extension that replaces a missing body part. It is part of the field of biomechatronics, the science of fusing mechanical devices with human muscle, skeleton, and nervous systems to assist or enhance motor control lost by trauma, disease, or defect. Prostheses are typically used to replace parts lost by injury (traumatic) or missing from birth (congenital) or to supplement defective body parts. In addition to the standard artificial limb for every-day use, many amputees have special limbs and devices to aid in the participation of sports and recreational activities."

If you type in prosthetic it reroutes you to prosthesis because prosthetic is an adjective or a derivative of prosthesis (the word).

If you type in prosthetic into dictionary.com you get this...

http://dictionary.reference.com/browse/prosthetic

__________________________________________________
Okay, so this is not the goal of this post but I had to clear this up first.

Madeleine should get a new prosthesis in the fall or so (or a new prosthetic leg, shall I say). We have the option of covering the leg so that it has some sort of print on it. We can also do a 'tattoo' so that you have a picture and it is laminated onto the leg. We do not have the option of a cool pipe leg. Unfortunately. As Madeleine is a below knee amputee (bka) and thus there is not enough room between her actual leg and the prosthetic foot.

I thought I would put up a few pictures to help you understand the complex world of prosthetic limbs. At the end of this post I am hoping that you can help us make a decision.

Logan's cool pipe leg which we cannot have :(
Love this picture of Logan! He is laughing! What a kid!

Mei Mei's cool laminated pipe leg (example of laminated patterns)
So pretty!


Mei Mei, herself, what a star!

Helen's fabulous Finding Nemo leg
What kid would NOT want this leg?


Another view. Cute shoes too!


Helen, and her cuteness, in her fantastic leg! Helen is just over two years olf and obviously doing as well as Madeleine with her prosthesis. She was born with the same type of thing as Madeleine and her mom, Amy, has been a huge support of me! Thanks Amy!


All of Sarah's legs
Sara has the same type of amputation as Madeleine. I don't know this child personally but I wish I did. She seems incredible. She surfs, she swims and she is so beautiful. Pretty cool that she has all these legs, eh? Shows you how much growth can happen. She donated the legs, by the way.

Sarah's new leg:





_______________________________________________________

So now you see our options. I have been think that we want to laminate some fabric onto Madeleine's new leg. It will look like Helen's or Sara's remember. The dilemma in making this decision is knowing that more attention will be brought to the leg. Parents who have kids with prosthetic limbs know all about this. How much attention do we really want? Should I just get it out there? Am I in the mood to explain what 'this' is? I'm not sure. Sometimes people don't even know that Madeleine wears a prosthesis; especially when she is wearing pants. Other times they notice but do not know what it is.

Here is a conversation that occured at the park the other day.

Older lady that was playing peek a boo with Madeleine: Is that a cast on her leg or something?

Me: No, it is an artificial leg (pause for understanding) a prosthesis.

Lady: a what?

Me: a prosthesis. She doesn't have a foot so her leg fit into the prosthesis so she can walk.

Lady: does she have a leg?

Me: yes, about this much below her knee (showing her with my fingers spread).

Lady: Oh. Was she born without a foot?

Me: No, she had a foot but it wasn't functional so we amputated.

Lady: (gasp) wow, that must have been a difficult decision.

Me: yes, it was. But she is so 'normal' now we don't really think about it.

Lady: Well, now yes, but it will be hard for her when she is older.

Me: Yep, probably, but you know, this isn't really that big of a deal.

Lady: (raises eyebrows)

Me: seriously, having twins is harder than dealing with a child with a prosthesis. She is fine.

Me: okay, gotta go... nice chatting.

_____________________________________________________

What would you have said? Where is the balance between educating and just wanting to be left alone.

Friday, April 11, 2008

my climber

Had to share with you all about my little climber. Madeleine climbs like she was born doing it. She climbs up anything. The sofa, the stairs, her crib, whatever. The OT at school says that Madeleine is more adept in climbing and balance then others in her age group. Well, hello! My girl wears an artificial leg! I swear she has an amazing sense of balance because she is so use to putting weight on one leg and has adapted to casts and new prosthetics. Michael says it is from him (hmmm), he says that sense he has an amazing sense of balance she gets it from him. Ask him to do Yoga- I dare ya!

Here is a picture from my friend's blog. I think it is super cute and shows you how monkey my kids are- they did this themselves!



For more pictures and to see the twins' best friend, Tegan, go to Brooke's blog at winbrooke.blogspot.com

The new thing is that Madeleine tells me she wants to dance Ballet. She sees the girls in the Sound of Music doing a bit of ballet and she tries to copy. So cute!

Wednesday, April 9, 2008

Hand, Foot and Mouth anyone? anyone?

Sooooo, the kids have contracted about the very worst virus man can get. It is called Hand, Foot and MouthDisease and let me tell you I am in sheer hell. hell. I tell you hell. This is NOT hoof and mouth disease found in sheep and cattle but I'm sure the farm animals would be as miserable as my children are.

Here are the course of events:
Wednesday (last week): School friends meeting at the Greenlake community center since we are on spring break.
Thursday: Target shopping, play ground
Friday: Birthday party
Saturday: Madeleine wakes up with high fever
Sunday: Madeleine feels like shit and is whiny all day
Monday: Madeleine goes to doctor- confirmation of HFMD (no, she didn't get it from the birthday party nor did she spread it there. It has a 3-7 day incubation period and they are not contagious until the sores appear in the mouth)
Tuesday: Madeleine still doesn't feel well and Max starts getting cranky. By Tuesday night Maxy has a fever of 101.7 and is refusing to eat.
Wednesday: Madeleine feels a bit better except that she has a RASH all over her entire body! Max now feels like shit.

Me? Oh, I haven't slept, but what's new? I've had a child hanging from my arm, leg, neck, back nipple- you name it. My kids are so unhappy and so so sick. I'm trying anything to entertain them. Here's what we have done....
*taken baths
*played with cotton balls
*painted paper and our bodies
*sidewalk chalk on the patio
*Mr. Potato Head (thanks, Cindy!)
*made musical instruments
*watched video clips of Julie Andrews singing from the Sound Of Music over and over and over and over and over and over (no, I'm not over exaggerating)

Friday, April 4, 2008

Can you jump?

This video was taken when we were visiting the trees at the UW. It is in front of Miller Hall which is where all my graduate classes were and the education department is.

What is it about kids and jumping? They can't actually get off the ground in the beginning, although they think they can. I had never seen a child with an artificial leg jump. Okay, let's be clearer... I had never seen anyone with an artificial leg jump. Besides, I had never even seen a child with an artificial leg until Madeleine was 5 months or so.

So, I asked Greg (Madeleine's prosthetist) if jumping was something that Madeleine should work on during OT time at school or if that was something that people with prosthesis are not able to do. This is his response...

Jumping is fine for Madeleine and most kids start jumping when they are ready. I see no limitations for Madeleine.

Bless you, Greg, for your care of our daughter and your positivity.


We Mothers...

First, a shout out to BethGo. Thanks for coming by! It means a lot to me to meet others out there who know what the stares are like. Who understand the heartbreak of knowing that your child will never be "normal" (I know, I know, she is "normal" but if you are questioning this statement you don't get it). Beth, I have been by your blog too and although haven't had as much time to read it as I'd like I did add it to my favorites so I can find it easily when I have more time. I scrolled around on it and found an entry where you talk about your oldest saying something about a child (I think on a cartoon) without a hand and he asks you what happened and you blow it off and say, dunno- born like that, or something. And then, of course, the irony set in. I can appreciate those moments.

I remember when I got pregnant Michael and I talked about what if our child/ren had Down Syndrome, or what if they had a cleft lip and palate, or what if they had autism. We thought of and discussed every possible scenario (or so we thought) and how we would handle it. When we found out we were having twins we knew there was a chance of cerebral palsy, hindered eye sight and other complications from premature births. We worked out situations. What if...

I think every parent does that. You wonder if your kid will be "normal" or, shall I say "typical". You think about what they will look like, what they will be like. You go through all the probable scenarios.... Downs, autism, club feet, cleft lip, heart problems. You never, ever think about what if your child is missing a bone or a part of their body. Seriously, this thought never crosses your mind. However, as I have said before, people are born missing limbs all the time. Isn't the statistic 500 children every year will be born with a limb difference?

Okay, so here's the deal. I appreciate you mothers who know what this is like. Thank you Lizzie, Mei Mei's mom, thanks again BethGo, thank you, Amy (Helen's mom) and all the others out there who are reading this.

A special thanks to Jenna and Logan. My Seattle friend that can understand what being this kind of mom is like. We can talk about prosthetist appointments, new legs, chafing, physical therapy to ride scooters, how "amazing" our kids are, and, most importantly.... the only other child that Madeleine knows who has a 'leggie', very special indeed. So, Jenna, I hope you don't mind but I am going to encourage all of my readers to check out your blog (click the link above or on the side) so that they can see Logan's fabulous new leg and revel in his awe inspiring scooter work. You trying riding a scooter with a knee that doesn't bend!!!!