When Auntie Martha was here....

When our mummy was younger she had a best friend. Her name was Martha. They spent a lot of time with each other and shared many experiences. Martha's parents, Fred and Ann, were also very important to our Mom. She learned a lot from Martha and her family and is forever grateful for the way they have shaped her life and the lessons they have taught her.

When Martha and Mum grew up they realized that they still had very much in common. They, in fact, had led similar lives. Even though they did not live in the same town during college or the years after they were interested in the same things. Marthie speaks and teaches Spanish. Mum speaks and teaches French. They both teach special ed. They both like to run and exercise. And they both love us very very much!

Our Auntie Martha is the best. She came when we were very small to help out our mom and dad. She visits us often and usually brings presents! She plays with us, holds us and loves us. We love her and uncle Ted. Here are some recent pictures from the last time they were here.

Video of Madeleine walking

As promised here is a video of Madeleine walking with her 'test' helper leg. Must admit that it is not the best picture or video of me (never mind my gigantic-still-nursing-twins breasts!) but we are proud enough of our little girl that I can tolerate some embarrassment.

Note that Max ran back into the exam room only to be herded by Greg (the prosthetist) back to the hallway. So much for stealing thunder.

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Test Leg

So, yesterday wasn't what I hoped. In fact, I have found myself to be in a bit of a funk as residual emotions spring forth. I had thought that Madeleine would put that 'leg extender' on and instantly feel freedom. I had thought she would enjoy joining the ranks of her brother in 'walkerdom'. Alas, she did not. The leg was foreign. It was tight. It was overwhelming and she cried. Cathy, our physical therapist, distracted her magically with bubbles.

I realized that this is going to take a while. sigh. And our journey is not over yet. This will take time and patience. It will be frustrating and painful. Michael reminds me that Madeleine adapted to the cast wonderfully. She learned to pull herself up. She learned to stand and cruise in the giant coccoon. She will learn to walk with her new leg but it will take time.

Putting on the sock. All is fine for now.

Putting on the test leg. What a sweet size 4.5 foot!

Standing, but not happy.

Crawling with the test leg on.

We will get her permanent Helper Leg (our words for it) next Wednesday and then the challenge begins.

Tomorrow...

Tomorrow Madeleine has her appointment with Greg, the prosthetist, for her test leg. Her foot has come in (a size 4) and he is now making a leg that is see through so that he and the physical therapist can see how it is fitting her. When they get it just right he will make her permanent leg- we should get it next week.

I'm so unbelievably excited about this next part of our journey. I cannot wait to see my baby walk! We are just one step closer to getting our lives back to normal.

To get ready for her new helper leg I had to buy her new shoes. They had to be "good", have a wide sole, be lace up and have some stability. Here is what I bought-




I wanted her to have cute girly shoes but also some that she could wear with almost everything. You cannot really tell but the leather is brown and the flowers are of course pink. I'm swelling with pride and buying my little girl her first pair of shoes.

At the Wading Pool

Now that the cast is off Madeleine has a free ticket to go swimming. Michael and I have been looking forward to this all summer long. There is a wading pool not far from our house at Greenlake. The kids LOVE it! They "swim" like naturals!


Maxy wonders how deep the water really is!

The Prosthesis Fitting

Madeleine had her first visit to see her prosthetist, Greg. She did very well and was very patient. He looked at her leg, bending it a bit and moving it around. He measured it with angle rulers, little tape measures and a big tong-looking thing. For the plaster cast he fit a soft sock over her entire leg and wrote on it with a special pencil. He then put the plaster of her leg in sheets making a replica. He will fill that cast in with liquid plaster and have an exact mold of her special leg.


In this first picture he is measuring her foot (11 cm) to know what size her new foot will be. He is ordering it now and it should be here next week. A Kingsly Pediatic Foot (see below).
Greg will make Madeleine's leg. Even though she has most of her calf her prosthesis will go up to the top of her knee. Her leg will fit into and give her control in movement.

Madeleine's first helper leg will be shorter than this one in the picture and chubbier. She will have the option when she is older to have a special titanium leg with pictures on it (like the one on the left) or a "cosmetic" leg.

Here Madeleine is helping Greg hold the blocks to measure her leg length discrepancy.

The haircut

Madeleine got her first haircut on Wednesday. She was such a big girl about it and remained happy for most of the duration. Here is her before picture.
During... Mom bribed her with an apple juice box- a special treat.
After. Front View.
After. Back View.
Side View.

Holland Revisted

I am resurrecting an old post.

Welcome To Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip- to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say.

"What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go.

That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But ... if you spend your life mourning the fact that you didn't get to Italy, you many never be free to enjoy the very special, the very lovely things ... about Holland.

(C) 1987 by Emily Perl Kingsley. All rights reserved

Fun in the Seattle Sun

Three friends at the water table.


This week Max and Madeleine played with their friend, Tegan, at his house. The weather was beautiful and Tegan (and his mom, Brooke) were happy to host a play date full of pizza and a water table to boot! Tegan has such a big yard and wonderful garden, the twins had a lot of fun!


Babies got blue eyes...
Madeleine learning to ride a trike. Topless.

yogurt

Yogurt is good!
Look at my hands! Madeleine demonstrating that you do not need to use a spoon to eat yogurt.
Maxy doing the sign for all done.



As the babies are learning how to eat like civilized beings I have been trying to get them to use a spoon. This makes for great fun and sometimes messy twins! By the way, don't tell Michael I give the babies a spoon and bowls of yogurt and let them have at it!


The video (from the post "talkies") shows the tail end of our breakfast meal today. Although the babies have only a few words (mama, dada, more..) the have a bunch of gestures (or signs). Including all done, more and no! For whatever reason when Max shakes his head no Madeleine laughs!

talkies!

Finally figuring out how to upload a video- let's try this....

http://

I am not my body

http://www.npr.org/templates/story/story.php?storyId=12643378&sc=emaf

Thank you, Lisa, for sending this to me so I could share it with others.

life post cast

The day before the cast was removed.
I can sit up now that the cast is off! (Madeleine in her shrinker sock)
I can even get around and push my brother!
No more exersaucer! I eat like a big kid now. Please excuse the messy counters (blush).

I have to say that now that the cast is off and Madeleine just wears the shrinker sock a lot of the stares and pitiful looks have stopped. No more questions.... so far. I guess people really think she was "born this way". I'm also trying to move beyond the disability. I'm going to try to enjoy Holland.

zoo

We went to the zoo on Saturday with our dear friend and her two little girls. It was the twins' first zoo trip, I'm embarrassed to say since we live maybe 3 miles from it. Funny that I have been to the zoo a number of times with other children that I babysat for (Aaron, Penney kids and others) but had never gone with my kids.

They liked seeing the animals particularly the cheetah and the emu. Although, humorously Michael and I refered to the emu as a 'chicken' or a 'turkey' (a throw back joke from our visit to the San Diego Zoo).

Other highlights included riding on the Merry-G0-Round and a trip to the 'Zoomazium' where the kids could crawl around and explore. I thought Madeleine would have been scared of the Merry-Go-Round, she was also riding a horse that went up and down but about 2 seconds into the ride she got the look of FUN on her face! She laughed and squealed and was delighted by the sights and sounds. She cried when the ride was over but soon got over her sadness at the sight of cheese and our other friends!

don't

don't
don't ask me why we couldn't lengthen

don't equate my child to a pirate

don't tell me about Heather Mills

don't tell me that they are doing amazing things with prosthetics 'these days'

do
do ask me about Fibular Hemimelia

do ask me about Madeleine's other qualities

do share stories about other children/amputees with me (if they are positive)

do realize that Madeleine is her own individual with unique strengths and challenges

do realize that Michael and I want the very very best for our daughter

do know that we did our research and feel confident with our decision

more details please...

I know that I owe more writing to this than I have been giving.

The last two days without the cast has been great. Madeleine is infinitely happier, a better sleeper, cuter and everything else you can imagine! She had a bath last night- the first in a long time. She loved it. She smells so good now! The steri-strips that were holding her incisions together came off and a lot of the blood that was still on her leg washed away. I have to say that her leg looks pretty good. Dr. Mosca did a really good job on the incisions and the stitches. It is still difficult to see your one year old baby scarred up. Her pristine skin marred with purple marks and lines.

She is obviously favoring the left leg now. We've noticed that she doesn't bend her knee. She will move it at the hip but not at the knee. I will call the physical therapist today. I can imagine that her knee is stiff after being in the cast for so long. She also had two large pins inserted into the bone where they did the femoral osteotomy (An osteotomy is a surgical operation whereby a bone is cut to shorten, lengthen, or change its alignment. It is sometimes performed on a hallux valgus, or to straighten a bone that has healed crookedly following a fracture. It is also used to correct a coxa vara, genu valgum, and genu varus).

The end of her leg is interesting. The very definition of a Syme's amputation is inserting the heal pad under the tibia so that it can be weight bearing. The bottom of her leg looks like the bottom of her foot only round. It is soft and pink. Dr. Mosca left the heal attached in the back by her Achilles tendon. I remember when she had her little foot her tendon was apparent and very tight in the back of her heal. It looks the same and it warms my heart to see that my sweet baby is still the same in more ways than a few.

What is done is done

The cast is off. She did very well. It feels great to hold my little girl. As soon as it came off she started itching her leg. The pins that were in her thigh bone to hold everything in place were kind of gross. As she moved her leg around it pulled on the tissue and started to bleed. She seems to be feeling a lot better now but is a little wobbly still.

We will go back in two weeks for measurements.

More later- I'm tired now.

Cast Off!!!!

In about three hours we will be at Children's Hospital for the next phase of our journey. First Madeleine will have x-rays taken through the cast. Then we will meet with Dr. Mosca and hopefully take the cast off. We will then meet with Greg, the prosthetist, and he will make a shrinker sock for her leg.

They have told me that Madeleine will be wobbly and feel insecure in the beginning as she is use to the cast and its weight. They recommend a warm bath to make her feel better, duh. The kid hasn't had a proper bath for six weeks! The prosthetist recommend massaging her residual limb as she may experience numbness and pins and needles. I think it will also be helpful for Michael and I to get use to our little girl.

I'm scared, honestly. I'm scared of the next part of your life. I'm afraid to see what she looks like under the cast. I'm afraid that she will be in pain. I'm weary of the stares we will get from people looking at her leg.

Just our life, I guess.

Harry Potter

I know I'm late in the HP craze but I just finished the sixth book. I don't know why I didn't read it earlier when it first came out. Now I am thankful since I can move from the end of the sixth book right into the seventh and last one.

I think #6 is my favorite. The character development was good. The suspense was great! It was innovative and started answering some long asked questions.

I was surprised last night when I read that Severus Snape killed Dumbledore! I have faith that there is a reason. Snape is my favorite character {blush} and I trust Dumbledore.

Okay, I'm such a nerd....

Count down to Cast Off

The reality of the cast coming off is so real now. Madeleine continues to amaze in the cast- a few proud moments...
-she stoops and recovers (while holding on) to get a toy
-while standing up on the cast she does 'no hands' as long as she is leaning against something
-she cruises around her crib, in the cast!
-she crawls fast
-she sits on the side that is not casted and props herself up with one arm
-she does "one arm push-ups"

Man she is strong!

I was cleaning her diaper area yesterday and noticed some gauze or padding that seemed loose. I pulled on it to try to straighten it out under the cast and it came out. It was soaked with dried blood and I was once again reminded of the reason for the cast in the first place. I pulled up the skin on her leg to get a better look and saw the incision on her knee and the steri-strips holding it together.

We have been so focused on getting the cast off that I feel I have neglected the reality of what is underneath.

4 days 00 hours 56 minutes 23 seconds

Some pictures from when Grandpa Gordy was here. More to come soon. This is Madeleine showing off her "standing up" prowess in the cast.
Maxy playing in the sprinkler statue area at our local outdoor mall.



We are in the home stretch! I can't believe that this phase is almost done and we will be onto the next. My attention is now turned to how Madeleine will deal with the cast being OFF. Will she miss her foot? Will she be apprehensive about putting weight on her little leg?

Regardless, we are ready to move on. In the past six weeks she has learned new things, she has adapted to her limitations and that reassures me that she will be able to handle anything that comes her way.

waiting

We got cancelled. They told me not to come in since Madeleine is feeling better and Dr. Mosca will not take the cast off early. poo. If she had only had a syme's amputation he would be since there were two osteotomies there is no chance.

6 days 21 hours 30 minutes and 41 seconds.