Grandpa's here and we're sick!

Gordy, Michael's father, arrived the other night. It is great to have him here. Unfortunately the twins are sick. A virus. They have sore throats and fevers. They are whiny and inconsolable.

I was worried enough to call the pediatric orthopedist at Children's Hospital on Sunday. He said that the fevers were probably not due to Madeleine's healing I should call the clinic on Monday. So, I called. We have an appointment for Wednesday to have X-Rays done and to see Dr. Mosca again. I love Children's Hospital. This is probably nothing. This is probably only a virus that is making my babies miserable but the nurse at Children's offered an appointment to ease my mind and to make sure that Madeleine was healing okay. Phew.

When we see Dr. Mosca it will be five weeks from surgery. It will be my first glimpse (albeit through x-ray) of Madeleine's little leg (her lucky leg if we are going to relate her to Nemo and his lucky fin). Michael keeps telling me that Dr. Mosca will not take her cast of this week. I can hope. I guess what I really want is for him to look at her and tell me that she is okay. Isn't that what ever mom wants?

Thankfully Gordy is here to play with Max while I attend to Madeleine.

8 days 14 hours 32 minutes and 13 seconds.

Holland

It's late and I'm waiting for Michael to return from the airport with my father in law. Because I'm waiting up and the kids are asleep I've had too much time to surf the internet. While surfing I have found wonderful stories of child amputees, pictures of beautiful children missing limbs, I also (rather unfortunately) saw pictures on an actual syme's amputation along with instructions on how to do it.

However, more profound is that I came across this little story that I'd like to share with you...

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 yourbags 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

surviving the cast

Madeleine will feel so much better when she doesn't have a cast on that goes all the way to her armpits!
Maxy and Daddy at Volunteer Park in front of the Asian Art Museum. The one time when Max wasn't trying to take his hat off.
Mommy and Madeleine in the sling.
At the Cheesecake Factory when Auntie Paula was here and we met Daddy for lunch.

*******************************************************
10 days 19 hours 23 minutes and 09 seconds until the cast comes off. We are surviving. Madeleine is amazing. She crawls with her belly off the floor and drags that huge cast around. She pulls herself to stand and bears weight on the cast or sometimes just stands on one leg. She likes it when I hold her hands and she "tries" to walk, she shifts her weight to one side when it is time to move the left leg (the casted one). I know that she will walk soon with her prosthesis and we are all looking forward to it.

Max is an avid walker now. He can get from a seated position to standing. He can stoop and recover and has learned how to walk quickly away from me! When Max walks Madeleine laughs. She is living vicariously through him and his accomplishments become her pride. So it is with twins.

blame

I need to upload some pictures of my beautiful children- who sparkle more and more each day.

Tonight I would like to refer to the beginning of the book, Poster Child, only because it struck such a cord with me when I read it last week.

When Emily was born her parents didn't know about her birth defect. This is common. After it is detected there is a frantic search for reasons why it happened. As humans we want to know what went wrong, what did we do, why us? I've referred to this phenomenon before. What had I done to make Madeleine's leg not grow? I ponder this often although I'm told it is futile.

I had a cold when I was six week pregnant, a bad cold with a high fever.

I have PCOS and possibly insulin resistance.

I did in vitro fertilization to get pregnant.

I carried twins.

I have been told that none of the above mentioned events caused Madeleine's Fibular Hemimelia. I still wonder what it was. Why does my child have an orthopaedic impairment? In my twins play group I'm the only one with a child like this. I remember the first few days of "Peps" meetings and I looked around at the other twins hearing their birth stories and I asked myself why I was the only one facing this.

As humans we do this. We want to know how we have affected our daily events with our choices. Do we really have the choice? Is it God? Is it free will? I have no idea. I cannot speculate and do not claim to know that answer.

"Suffer the children" Michael once said. It is our fault that Madeleine is deformed.

"The Devil made her" I have been told. God would never make a baby deforemed, would never allow a child to suffer; it is the Devil's doing.

"Maybe you weren't suppose to have children" (with reference to IVF). Maybe God punished you for messing with Mother Nature.

"What did you do in your pregnancy that made her leg stop growing?"

"Is there anything else wrong with her?"

"How's Max? Is he normal?

These are questions I have been asked and statements others have made to me.

"She was hysterical. She took the blame for me, for what I was: deformed. there is that tricky line in Exodus she'd memorized as a child, the verse that promises that the sins of the fathers (and mothers) will be visited upon their sons and, in this case, their daughters. Here I was, a condemnation of her life...

The nurse gave Mom a look she would get used to. Later, I would also come to know it well: a look of pity, sadness, with kindness and a bit of unexplainable triumph mixed in. A strangely open yet mysterious look- penetrating and diffuse. ' We just don't know what God is going to do."

Poster Child

My friend, Margaret, introduced me (hesitantly, I find out) to a book called "Poster Child" by Emily Rapp. I read it. I was moved. Emily has PFFD or Proximal femoral focal deficiency http://www.emedicine.com/orthoped/byname/proximal-femoral-focal-deficiency.htm . Poster Child is a memoir. It has been interesting to me to read the recounts of an adult who has had amputation surgery, in fact, the same as Madeleine's. There were so many places in this book that hit home for me. So many places where I shook my head and said to myself, "yes, I know that!". Amazing, really.

I think the next few posts on the blog will refer to the book. I cannot help but write about it.

http://www.emilyrapp.com/

In the fall

In the fall I will not be returning to my job. I quit my job. Well, no, I'm hoping to take a medical leave because of the care that Madeleine will require.

I was sad to quit. I love my job. I love my students and the teachers I work with. I love my principal. There isn't much I do not like about teaching at the school where I work
http://www.seattleschools.org/area/main/ShowSchool?HighSel=024&MiddleSel=115&ElementarySel=211&AlternativeSel=950&ElementaryBtn.x=13&ElementaryBtn.y=3
I made the decision based on certain criterion. It was difficult.

1. I don't make enough financially after childcare to contribute to the family fund.
2. I could not retain my current nanny for the time that I would like to teach.
3. I didn't want to find another nanny that I would trust with Max and Madeleine and her needs.
4. She needs me now.
5. I did not want to be away from my children three days a week.
6. Madeleine needs me now to take her to therapy, to school, to the playground.
7. I want to have my own business and this brings me a few steps closer.
8. I will tutor and have more flexible hours.
9. and 10. It just made more sense.

As I mourn my daughter's foot I mourn the loss of part of my identitiy as a teacher at Coe School as well. I will miss it in so many ways. But, there will always be more students and there will never be another second year for Max and Madeleine. Madeleine will never learn to walk on a prosthetic leg again. I am her therapist. I am her teacher. I am her mother.

no different

I always said (and thought) that I wouldn't treat Madeleine any different than Max. Really. I want her to have similar experiences, I didn't want to give her special treatment. I kidded myself really. How could I think that she wouldn't have anything different, any different experience than Max? Than any child?

Already I regard Madeleine differently. I think I always will. On the surface I carry her. I pay special attention to her needs. I'm extra cautious because I fear she is in pain or uncomfortable.

In the future I will help her understand her new body. I will carry her when she isn't wearing her leg. I will massage her residual limb with fear that she has phantom limb pain, pins and needles or numbness. I will explain her difference to her and those around her.

What part will Max play? Is he already playing it now?

I love my boy. He is the most beautiful boy I have ever known. His smile lights my world and melts my heart. He is a wonderful soul. He is a twin.

Mother's Guilt

Do all mothers feel guilt? Will we always blame ourselves for things that didn't go right, didn't go as planned? I think I felt guilt from the very beginning of my children's lives.

I couldn't get pregnant. My body didn't work right. They told me if I did get pregnant I may not be able to carry the baby to term. My uterus is deformed, heart shaped, bicornuate, a Texas Longhorn (as Michael calls it). I had an MRI (one of my worst experiences EVER!) to make sure it could handle a pregnancy. I wished for twins knowing that my uterus may not be able to support two lives. It barely did. I feel guilty for that.

My babies were born after 34 weeks of gestation. I couldn't hold them in any longer, not sure I wanted to at the time. There is guilt for that. I fought like hell to breastfeed both of them, I know that is to try to counter some of the guilt of my body not working.

My daughter was born without a fibula, it never grew. Something happened when I was about 6 weeks pregnant. A blood clot, trauma in the limb bud and the leg stopped growing for a time.

What is Fibula Hemimelia? (“Congenital Absence of the Fibula”)
Fibula Hemimelia can also be known as congenital longitudinal deficiency of the fibula. Or, it can be called congenital absence of the fibula. The name depends on the extent of the abnormality. It means that the fibula, one of the two bones between the knee and ankle, has a problem. The fibula is important because it is the bone upon which the muscles of the leg originate. The condition is the most common of limb abnormalities and most often only one leg is affected. The fibula can be totally missing. Or, it can be too small. Males are affected twice as often as females.

Causes of Fibula Hemimelia? What causes the problem with the fibula is not known. In some instances, though, genetics may play a role. Some researchers suggest that the deformity may occur between the second and eight week of fetal development. This is the time when the limb buds start to develop. Environmental factors may contribute to the condition too. Both radiation and insulin production may play roles. Symptoms of Fibula Hemimelia? A leg that is moderate or significantly shorter than the other Abnormal positioning of the knee and/or ankle Ankle and/or knee instability Dimpled skin over the site of the deformity

Treatment of Fibula Hemimelia?
How the condition is treated depends on how severe it is. The goal of treatment is to allow the child to function as easily as possible. Some children may only need a shoe lift. Others may need to use braces or casts. Still others may need surgery to help lengthen the leg. Only in the most severe cases is amputation needed. Amputation may enable the child to learn to walk using a prosthesis. For instance, Aimee Mullins, who was born with the condition, had both legs amputated below the knee before she was one year old. Now in her twenties, she skis, swims, plays softball, runs, and does the long jump. She's a Paralympic runner and a fashion model.

My guilt extends beyond Madeleine. All this time I have been lugging her around on my hip, sleeping with her in my bed, comforting her through stress, petaling her cast, rubbing her legs.

What have I been doing during this time for Max? Oh, I try. I try to give him the same attention but he doesn't fit into this equation. This time is for Madeleine and I have to hope that Max understands.

I felt bad enough tonight that I took a bath with Maxy. Since Madeleine cannot take a bath right now we had to sneak. We crept into the bathroom and turned on the water. Max could hardly contain his enthusiasm! We played and I washed his hair, his pits, his butt. I'm trying to give him individual attention to curb my guilt.

down the cast

The dishes sit dirty in the sink. The high chair trays still have breakfast on them. But my babies are sleeping and I am compelled to write about the happenings.

Madeleine is adapting, which is hard for Michael and I to watch. We tell her the cast in temporary. We talked to her about the day when it will come off. Tell her about the day when she will walk with her helper leg. How proud we will be. She will join the ranks of her brother and we will have two toddlers.

She is adapting, crawling over five feet at once, trying to stand up- to pull herself up. This barrier has become part of her. Knowing now that her helper leg will be seen in the same way. She will come to depend on it to move, hopefully she will come to see it as an extension of her natural body.

Her swelling in the cast has gone down. I can now put almost my whole hand down the leg shaft. I can reach almost to the front of her knee. Her skin is scaly and rough. I rub her leg and remember how much I miss doing that. My mother always rubbed my legs when I was little as I got "leg aches" so much. It felt so good when I was young that I do it for my children hoping it brings them the same comfort it brought me. Madeleine likes it when I stuff my hand down her cast and rub and itch her left leg. Her eyes will half close and she calms down. I can only imagine how itchy it is inside there. Last night I felt what seemed to be the steri-strips used to close her incision. Michael said it was wires. This freaks me out a bit and I find I am feeling worried to look at my daughter's new leg. I know Michael feels the same.

A visit with Auntie Paula

Michael's sister, Paula, left yesterday. Strange that this is only the second time I have ever seen her in person. Despite our unfamiliarity we got along swimmingly. She has all of Michael's great characteristics: warm, kind, sincere, funny, fun-loving, attractive, playful and loved the twins! She was wonderful with the babies and I think they truly miss her. She was an incredible help to me too! She anticipated my needs before they surfaced. She helped with dishes and laundry but more importantly she interacted non-stop with Max and Madeleine.

I loved the way she played with Madeleine, holding her for close to an hour on the Dora Car so she could push the buttons and dance to the same old song! She got up in the morning with Max so Michael and I could sleep in a bit. (A truly wonderful gift for parents of twins!) She fed Maxy breakfast and held Madeleine in order to get her to eat something.

You can tell that Paula has three children and loves her job as mother. Her patience and love of family was contagious and I found myself more in love with Michael and my babies than ever before.

Thanks Paula, you have given us a tremendous gift.

*Pictures coming as soon as Paula emails them to me!

29 days left

29 days left until the wretched cast comes off.

I'm not posting updates as much or as often as I would like because it feels like I have two newborns again. It has been hard to return emails or phone calls. Geez, it has been hard to take a shower or even go to the bathroom.

Madeleine is adjusting as well as expected. She is "crawling" or dragging her cast rather. She is happy to play on the floor for about two seconds before wanting me to hold her. Her pain is being managed better and her medication doses are fewer and farther between. With that said, she is still not the same baby. She is hot and uncomfortable. She is whiney and needy. I think she is depressed.

Maxy has really taken off in the walking department. Of course our home is small enough where he can creep or cruise to where he needs to go but if necessity calls, or if Mama encourages, my little bugger can walk his baby butt across the floor!

Much more is that Max is taking this cast thing in stride. He gets so little of me now but takes it so well. I think he knows tha Madeleine needs me right now.

Just at home

Max still enjoys pushing his sister around the house with his car. This time he needs some extra help (provided by grandma) and a pillow to keep Madeleine upright, but fun, nonetheless.

In this photo Max is wearing a hospital gown (hee hee) we "borrowed" it so that we could use it as a bib and crumbs wouldn't fall into the cast. Don't worry, I'll return it when we go back to clinic to have the cast removed.

Speaking of casts... the poop and pee continues. I have such a hard time with this aspect of the spica. It seems that I just can't get her clean enough! Today I tried to dry her cast with the hair dryer and we saw her scoot her little self across the floor and away from the dryer. She is afraid of the noise (she is like this with the vacuum as well).

We switched her meds today from Oxycodone to Tylenol with Codeine, hoping that she will tolerate it better and not have so many side effects. The Oxy seems to upset her stomach, makes her itch and generally feel lousy. I think it will be a while before she is off pain medication.

Pictures of the cast

snoozing at home in Mommy and Daddy's bed
Getting around in the cast
rolling over
sharing a snack with my brother

Pictures from the hospital

so sleepy

I'm kind of awake
Wagon ride looking at the zebras at Children's Hospital
Car seat check

Piss and Vinegar

Diapering is a whole new adventure now.

Madeleine is still not eating as much as we would like yet she is still able to poop everyday. Her dad's constitution, we say. The poops are nasty. They are runny and seem to spread like a ball of hair mousse.

Yesterday the pooped seeped into her cast again. My mother, being the clean freak she is, grabbed a vinegar soaked wash cloth to clean Madeleine's already yellowing cast. My daughter now smells a bit like poop, pee and salad.

We can now say that she is surely full of piss and vinegar.

poop

We just need to get through this. Honestly, it is awful. She pooped today (even though I can hardly get her to eat) and it was like a newborn breast fed poop. It seeped into her cast soaking the gauze and padding. I had to wipe it out with wet wipes and wash cloths then I tried to dry it with the hair dryer on cool. We aired out her butt for a bit and that must have felt good for her. On the side of her leg where it is casted her leg is so swollen you can't stuff a cloth down that side. It looks like it is soaked with blood and I am reminded of her massive surgery.