Behold the old leggie...
Sunday, December 14, 2008
Behold the old leggie...
Thursday, December 11, 2008
Madeleine's first leggie
Monday, December 1, 2008
The Ms have moved into big kid beds and it has proven to be a curse of night time for Michael and I. Bedtime struggles are at an all time high. Sleep is at an all time low. I thought it couldn't get any worse but yet it has.
On the up side: we had a lovely Thanksgiving with my BFF and her husband. I enjoyed a very rare day at the spa and very enjoyable company. Max and Madeleine love their Auntie Marsfa and Unca Ted to pieces. Thanks for a great weekend.
On the leggie side: we should have the new leg in about two weeks. Greg made Madeleine a test leg or 'practice' leg today. We tried it out and I think that Madeleine will very much like her new leg. It is so much thinner and so much less "baby".
I'd love to write more but I am just too weary.
Monday, November 17, 2008
So, we have been listening to JR's music for a while but we finally got to see him live! We went to the show last Friday and it was truly fantastic. This was the first time that Madeleine and Max had ever been to a live performance. Heck, any time they have been to any performance, they have never even been to a movie!
Before the show. Max wanted to play Justin's guitar, he kept asking to play with the 'toys up there'.
During the show they kids were mesmerized, smitten and enthralled. Madeleine danced a bit and sang along with Justin. It was the neatest thing!
Madeleine getting ready to bust a move.
The band and the mosh pit in front.
The kids' favorite song is probably "Imaginary Rhino" on the Meltdown CD. Here's a clip of Justin singing it live last summer, I presume.
This is Madeleine and Max's version of the same song. By the way, Michael and I listen to this song all day and all night and in our dreams too.
Um, the stupid tech person messed up and they didn't get the data they needed. What?! Are you kidding? Nope, not kidding.
Dr. Sleep thinks Mad's issues are behavioral. She recommended reading some book and being firm. Her word, not mine. Basic behavior shaping sans whistle.
I took my appointment to ask her everything else I could think of so all my friends could benefit from the real live sleep doctor.
Q: When do babies need to stop eating or nursing in the middle of the night?
A: 3 months if everything else is normal (weight etc.)
Q: When to do Cry It Out, if you are going to go that route?
A: 6-9 months. She recommends a modified approach.
Q: How long should bedtime prep be?
A: No longer than 30 minutes (yeah, right, tell that to M and M.)
Q: When do kids give up naps?
A: 25% will by the age of 2. 25% will still need naps at 5 years old. Most kids give it up between 2.5 and 3.
Sunday, November 16, 2008
Monday, November 10, 2008
Friday, November 7, 2008
- She is doing awesome
- Her heal pad is centered well over her tibia; there is no chance of slipping
- Her Achilles tendon has remained the same
- The valgus in her knee is not that bad right now and no surgery is needed for a long time
- There is no possibility of bony overgrowth
Dr. Mosca videotaped Madeleine running up and down the hall. He told me that her gate looked great and she was developing wonderfully. He also wrote a prescription for a new leg! We will begin molding for it next week.
Max was so excited to see Dr. Mosca that as soon as he came into the room Max shouted, "It's Dr. Moca, yeah". Then, last night when Auntie Greta was here Michael asked Maxy who our new president was and Max shouted, "Dr. Mosca!"
This morning is our follow up with the sleep doctor.......
We married on a Friday in jeans and sweaters. We said our vows and kissed. We went to dinner and relished in the fact that no one knew we were married except us. We ended our night dancing to 'My Funny Valentine' at the Fairmont Hotel. We drank champagne, ate chocolate covered strawberries and had the BEST time. I wouldn't have done anything differently.
I love you, Michael, can you believe it has been five years?! We went from a tiny apartment on Capitol Hill, to a bigger apartment and a cat, to our house with our wonderful twins. We have endured more than a couple should have to. We have seen family strife, infertility, the devastation of an imperfect ultrasound, hospitalized bed rest and life without family near and two infants. Sure, it has been hard but we have triumphed. Our family has made me the happiest I could ever imagine to be. Thank you for everything. I love you and cannot wait for the next five years and beyond.
Monday, November 3, 2008
Thursday, October 23, 2008
Max and Madeleine argue. They fight over toys, food, me, Michael, space, you name it. But they always turn to each other first for a laugh (seriously, they crack each other up!), a hug, a kiss, a snuggle, a game and a friend.
One of the sweetest things is the hand holding and hugging. If Madeleine is sad and Max is near she turns to him for a hug. I have a rule that while in a parking lot we all hold hands, usually the twins do this willingly.
The new thing is holding hands in the car. I finally got a picture of it....
- wooden blocks: Madeleine has been building a tower with anything that will stack.
- Caillou books (I found a bunch on Barnes and Noble dot com, who knew!? They don't have them in the stores!)
- construction vehicles for Max. Poor kid bulldozes his oatmeal and anything else moveable.
- twin bed sheets
- twin comforter
- water color paints
- coloring books
- The new Justin Roberts CD, "pop fly"
- gap sweat shirts
- Madeleine needs a new babydoll. She is particularly drawn to the brown baby at Pottery Barn Kids- naturally, it is $50!!!
- Fresh Play-doh and tools
Wednesday, October 22, 2008
Tuesday, October 14, 2008
Max while I'm trying to sweep up all remnants of play-doh:
Mom, get that dirt right there. No, Mom, right there. Here... (pointing)
Good job, Mom.
Now mommy you get this here, don't forget that piece, there.
I hold the dust bin.
Don't forget to wash it. I help.
Madeleine while seeing a dog sitting in the front seat of a car:
Mommy, look at that doggie right there.
He is in the car, he is going to drive the car, mommy.
That dog is so funny, mommy! I want to see more doggies in cars.
Funny from yesterday:
After Madeleine pooped in her potty on her own volition Max said:
"I want to see Madeleine's poop. Oh Madeleine, it's a tiny one, good job.
Wednesday, October 8, 2008
We are getting over the robbery. I have to do the paperwork still. I have to go through everything. Michael has rigged the back door to be more secure than any alarm company could.The kids have mostly forgotten, except for my elephant daughter who can remember conversations from a year ago, almost.
The night after the break in she woke up to say this...
"Mommy, Max and Madeleine in car...
Mommy cry, Mommy said, with tears...
Man come and fix the door...
Now TV no works."
You might think that Michael and I did some terrible thing in a past life to deserve our luck. Believe me, we have thought this too. We have dealt with infertility. With failure. We have a child with a 'birth defect' a 'disability'. I had a hard pregnancy. We had prematurity. We had surgeries, medical issues, complications. We just moved. We were robbed.
When I think about this I turn it around.
What have we done to deserve a beautiful family? We have two of the most beautiful children I have ever seen. Michael and I have endured such shitty situations that we can weather just about anything. We have a very loving family. We have amazingly supportive, fun and awesome friends. My son is the smartest little boy I know. He is sweet, sensitive, clever and has the best little disposition. My daughter is the most incredible little girl. She teaches people wherever she goes. She breaks stereotypes and causes people to look twice. She is strong-willed, determined and demonstrates more fortitude than your average fifth grader. My husband is the funniest guy I know. He makes me laugh daily. He supports our home in so many ways. He works to pay for it. He cleans it, he decorates it and makes it our secure place.
I am the luckiest girl alive.
Friday, October 3, 2008
I pulled up to the driveway and took Max out of his car seat. I told Madeleine that I would put Maxy to bed and then come and get her out. She had taken her leg off.
I walked up to the back door, Max still half asleep in my arms, and I noticed the door was slightly ajar. I thought, that's weird... did I forget to close the door this morning? I looked in the mud-room (or laundry area) as I went up the first five stairs that lead to our kitchen and saw distinctly muddy shoe prints and debris. As if someone had been working in the garden and come in and not taken their shoes off.
I approached the kitchen and saw a full bottle of apple juice, still cold, sitting on top of the stove. I looked into the living room and noticed the TV and its stand was pulled away from the wall. the doors to the stand were pulled off. I quickly looked at the sofa and saw the cushions ruffled. My heart was beating quickly and my breath was short. I picked up the phone and went outside. I called Michael at work.
"Someone has broken into our house."
"Call 911 now," he told me.
"911. what is your emergency?"
"Someone broke into my house and I have two very small children with me."
"Are they there now?"
"I don't know."
"Go back to your car and lock the doors or drive somewhere safe, the police are on their way."
Hysterical, I sat in my car hugging my two kids. I cried and shook until the police came, entered my home with their hands on their guns.
Michael was home shortly after that and we went into the house to assess the damage.
The thieves ransacked our home. They pulled the mattress off of our bed. The took clothes off the shelves in the closets. They went through my drawers. Went through my refrigerator, my freezer, my cupboards. They saw pictures of my family. My kids.
They took various things of little value. Michael's shoes. Our computers. Our TV equipment. Some DVDs and perhaps some CD. They did not take our cameras or our video camera. They did not take our television (it is big and heavy).
While in my room they went through our drawers and emptied my jewelry box. Emptied. Gone.
I'm sick to think of this as it is only stuff. But, it is my stuff. My personal and sentimental things.
They took my Tiffany jewelry that Micheal has given to me.
They took my silver necklaces that were given to me on the day of my children's birth.
They took my believe.
They took the pearls I wore at my wedding.
They took the pearls my dad gave to me.
They took the black pearl and white gold ring my grandfather gave to me when I graduated from high school.
They took my watches. The one that my mom gave to me with the turquoise.
They took my rings my mother bought for me when we were in Montreal. When we shopped together and bought matching rings.
They took the silver wedding band I wore to Mexico and when I was pregnant and my wedding ring wouldn't fit on my swollen fingers.
They took the gold necklace Skip's mom gave to me before she died.
They took my ruby necklace Michael bought me in the early years.
They took my silver and peridot necklace Michael gave to me for my first mother's day.
They took the pretty flower necklace with the little diamond in it.
They took the pressed flower necklace Megan gave to me.
They took my wedding ring. My Grandmother's Diamond. The gold setting that held it originally. The old 3/4 karat diamond sat in a beautiful platinum setting Michael and I picked out. I didn't wear it a lot because it was big and pokey. Now it is gone.
Thursday, October 2, 2008
Tuesday, September 30, 2008
Dr. Mosca urged us to do the amputation early as she would learn to walk with her leggie from the get go. That she wouldn't have attachment to her biological foot and would come to see her prosthesis as an extension of her own body.
Damn, I believe he was right.
Yep, we're twins.
Double the cheese.
Monday, September 29, 2008
Tonight Madeleine went pee pee twice in the potty after pulling down her pink training underpants. Max was the superstar this evening as he went a little peepee and a tiny poop. He called it a baby. Later while we were playing Maxy told me he wanted to sit on the potty again. I went into the bathroom with him and he promptly poo-ed a largish turd. Oh the joy! Tonight was big for my little man... he had a poop in the potty and then requested to go and finished the job!
Funny side story...
Madeleine asked me what Mia and Cake were doing tonight. She wanted to know if they were sleeping at their house or if they were still playing. I told her they were asleep, as she should be. What is remarkable about this is that Mia and Cate are my friend Sue's twins. They were born the day after Max and Madeleine and Sue and I spent a few weeks in the hospital together. Although we use to get together when the babes were younger we haven't seen each other in quite a while. How Madeleine remembered the girls enough to talk about it is beyond me! She also told me that there were two girls, Mia and Cake, and asked if they were twins (we had been talking about twins tonight). I told her they were twins and she said that they are 'cute'. Awwww.
Sunday, September 28, 2008
Way to go Madeleine!
Friday, September 26, 2008
Hmmm, where do I start???
I quit my job:
I foolishly took a very part time job in a high school this year. I will give you my reasons for taking it and my reasons for leaving it.
I want to keep my foot in Seattle Public School's door.
I am curious about high school special ed.
I have a grant I need to pay back with service.
I can call myself a public school teacher and have a Seattle schools email account, title etc.
I can keep my self 'fresh' on new policy and professional development.
I was asked to work too many hours, way above my contract.
The administration were micromanagers.
The sped team was grouchy and a real pain in the ass to work with.
I missed my kids.
The money was sooooo not worth the work.
Reason #2 for being away...
My mom was here. Or should I say, Grandma. She was here for about a week and we were so so busy that I had no time to post. Can I just say that my mom is the best Grandma a kid could ever have?
It was so fantastic to have my mom here to help out. Michael and I were amazed at how much we could get done while she played with the kids. The Ms were crazy for her! I mean, who wouldn't be, if you got candy and presents for just being you! She played and read stories and chased them around the house nonstop. When they asked to play with Playdough right before dinner, she said, Sure! When they wanted to paint, she said, Okay! When they asked for more candy she said, Why not? I'll join you!!!
The kids impressed her with their potty prowess, their enormous repertoire of songs and their sheer cuteness. And, they worked her like only a grandchild can. When they needed to go to bed they asked for one more story, one more hug, one more snuggle. She gave in.
As an adult I enjoy my mother. We get along well and have similar taste in things. We like to shop, to stop for ice cream, to drink wine and chat. I sincerely wish she lived closer. Tonight the kids were in the bathtub doing things my mom taught and encouraged them to do. Madeleine said, "Mommy, Grandma doos that, member?" [Grandma does that, remember?] And then Max said affectionately, "I want more Grandma, Mommy". Over the weekend we reminisced about Grandma and the kids told me that Grandma was going to come on a Big Airplane and bring more candy. Ha Ha.
Number 3 reason I have been away:
When my mom was here we went to see my sister. I haven't spent time with her in many many years. I haven't seen her 15 year old son in many many years. She now lives close enough for a quarterly visit. Here's what I noticed about my sis... she looks older as I'm sure I do. She is just as pretty as she always was. She is smart and funny. She is a good mom. She keeps a tidy house. I wish we had more time together.
Here's what I noticed about my 15 year old nephew: He is bright and congenial. He is easy to chat with and NOT socially awkward. He is a cutie pie! He seems like the kind of kid I would have hang out with if we were in the same generation; he likes to skate, to play music, to have deep thoughts, and he has a pretty good style for a teenager.
Thank you Wendy, Craig and Chance for your hospitality!
Number 4 reason I haven't written in awhile:
Madeleine had her dreaded sleep study last week. It sucked. I will have to write later a play by play of the night. I don't feel like reliving it here.
- Let us just say that it is the most 'non-natural' sleep environment.
- Madeleine hated it and was scared.
- I doubt they got any information.
- I'm glad I did it because if I didn't I would have always wondered.
Okay, you are all caught up now. I will post a few pictures soon.
Tuesday, September 9, 2008
In the process they have uttered the most precious phrases ever! I am writing them here because I never want to forget what they have said. And, I want to be able to remind them when they are teenagers that they actually said these words aloud.
I want Milky
I want the other side
I want to trive (try) it.
Just a sip.
Just a little bit.
I can be a baby too.
Mommy's boobies are so nice and soft.... so soft.
Milky is put away now.
Milky all done.
Max is a big kid, have cow's milk now.
I want to touch the boobs now, mommy.
Put a hand there?
Rub mommy's belly now.
Milky put away.
Migraine: still there after trying several different kids of meds. I'm on something now that I take daily that is suppose to help alleviate the pain. The pain cycles through different degrees of intensity but is always present.
Boobs: so soft and small now. Actually quite nice to have the girls back to their normal size. The shape has changed a bit though, ehem.
Me: It is nicer than I thought to be a non-nursing mother. I was sad for a few days but only because of the nostalgic reminder that my babes are kids now and their needs have changed.
Monday, August 25, 2008
I have always known my migraines to be related to hormones or food. If I even have a sniff of red wine I have a terrible migraine for a week! When I was early pregnant I had a constant migraine until I was about 16 weeks along.
After the kids were born I didn't get them. I was nursing so much and producing enough milk to feed a small village that the hormones were kept in check. Prolactin is a funny thing.
The nursing hormones did other things of benefit. They gave me a regular cycle and I felt like a human. Before getting pregnant and nursing I had completely wacky cycles and crazy hormones. I have Polycystic Ovaries or a condition known as Polycystic Ovarian Syndrome or PCOS.
Because I have nursed the children for so long I almost forgot that I am plagued with this metabolic disorder. I have enjoyed regular and predictable cycles and other benefits from healthy hormones. Not for much longer....
Although the kids still nurse they do not do it as often. So, now my hormones are getting wacky again. I'm getting migraines, having annovulatory cycles and some of the other dreaded symptoms (you will have to do an Internet search to find out about that...)
After 36 years in this body I have begun to know it well. I know my menstrual cycle like I know a good book that I have read many times. I know my moods, my ups and downs and my triggers. I enjoyed pregnancy as it afforded me an experience to live in a body that was not my own. I have enjoyed nursing my children for so so many reasons.
As I have mentioned before I cannot understand why someone would not, if they could, nurse their children. Why would you trust a company that produces synthetic milk to sustain your baby? Why would you put a latex nipple in their brand new mouth if you can put a part of your body? Really, as a pregnant woman you nurture your off spring with your body until they are born, why not continue to feed them with what nature intended? I think breastfeeding my children has been one of the most important things I have ever done as a mother. And I am not being over dramatic here. Unless you have been there you cannot know.
Challenge me on this one. I dare you.
Regardless of my feelings on this I am ending my nursing relationship with my precious twins. They are now 26 months and healthy, happy children. I know that some would call me creepy for nursing them for so long. All I have to say to you is... you don't get it.... and mind your own business.
My migraines are returning with a vengence. They are dehabilitating and constant. They range from shitty to worse. A four to an eleven on the pain scale. I went to the doctor and there is nothing they can give me while I am nursing. I can take ibuprofen and that, at most, takes the edge off.
I have told Max and Madeleine that the doctor has told me to stop. I have told them that mommy's headaches hurt and it is time for me to take medicine but they cannot have milk when I take it. I have discussed with them that babies drink their mommy's milk and big kids, like them, do not need it. Even with all these reasons it makes the three of us cry.
My babies are growing up and they will be my last. My body has done what it was suppose to for a while. It grew healthy twins despite their prematurity. It nursed them well for two years. Now it is time for me to go to battle against it again. I won once.
This morning was our last time nursing. I didn't realize that that would be our last time but as my children went to bed sans milk tonight I think I just may have to be done.
Wednesday, August 20, 2008
Friday, August 15, 2008
Madeleine hugging her new Monster vigorously.
Having Pizza on the picnic table.
Maxy showing off his new Monster.
Friday, August 8, 2008
I'm trying to show Madeleine every leggie I can. We just watched a show on Oscar Pistorius and she couldn't stop talking about his leggies.
Here's where you can help....
Find pictures of people with leggies and send them to me. You can email them or send me the link to them. I will compile and put on the blog. This way I can show Madeleine lots of pictures of people with different leggies. Hmmm, maybe I should publish a book......
Thursday, August 7, 2008
Monday, August 4, 2008
I read the literature, I knew what the different types of FH were, I looked at x-rays and real examples of people with this disorder.
When Madeleine came out of me and I saw her perfect 5 toed foot and I felt a victorious sigh of relief. I was so sure that we would lengthen. I couldn't imagine cutting off that foot.
For the first time ever I requested my daughter's chart. I read all the medical charts, paperwork, radiology reports, physical therapy reports, and the surgical report. I read the impressions from the doctors, their take on our conversations. I read that Dr. Mosca wrote that Madeleine's condition was 100% correctable. I read that he discussed lengthening with us and that Madeleine was a candidate. I figured out that what I had hoped for had come true.
I wanted Madeleine's condition to be treatable. What I failed to realize is that her condition was treatable and that although she was a candidate for lengthening she was a better candidate for amputation. Amputation is a form of medical treatment for a child with fibular hemimelia, it is not failure and it was not our last option.
Today I took Madeleine to see another doctor. We called it a second opinion even though this doctor had actually been our first opinion. I made an appointment to see Dr. Saliman even though I knew that we had gone to the best doctor at Children's Hospital, Dr. V Mosca. I wanted to hear Dr. Saliman say that she would have told us to amputate. I wanted her to look at Madeleine and say that she was the best that she could be. I wanted to tell her how thankful I was for her first opinion.
Michael and I saw Dr. Saliman at Swedish Hospital when I was pregnant. I delivered at Swedish, as do many families in the Seattle area, and had my level II ultrasound there. We saw Dr. S after our ultrasound when the radiologists could not tell us what was going on with our unborn daughter. We were scared, sad, raw. She was pleasant, reassuring and helpful. We have always held her in the highest regard for the way that she reassured us that Madeleine would be fine. She told us that termination was not something you did for FH. She made it 'normal' when everyone else in the medical field had no idea what it was. In some ways she saved Madeleine's life.
Dr. S saw Madeleine when she was a brand new baby. She did her first x-rays and was the first to tell us that even though Madeleine's leg looked okay there was a lot going on in there.
Madeleine was treated at Children's hospital because it is Children's Hospital and because Dr. Mosca could basically do a Syme's amputation in his sleep.
The first thing that Dr. S said to me was that she was happy to read that we made the decision we did. She was happy that we decided to amputate and that that was definitely the treatment she would have recommended as well. She told me that if Madeleine had been her daughter she would have amputated as well.
That is what I was hoping to hear.
Imagine second guessing your decision to amputate!
She made a lot of good points that I had not heard from Dr. Mosca. She said that lengthening is problematic for some kids with FH for a few different reasons:
1. multiple surgeries. She agreed with Dr. M that Madeleine would have had to have 2 or more lengthenings with multiple reconstructions.
2. difficulty stretching nerves. She said that sometimes the most painful process is stretching the nerves since there is heightened sensitivity and spasm-y pain.
3. loss of time, movement, activity with one's peers. She said that Madeleine will have more normal activity, strength etc. because she is doing all those things now. She isn't limited by the prosthesis and is able to climb, swim, run and tumble. And there is no pain.
She also shed some light on Madeleine's case, some of which was illuminating some of the surgical report that I had not heard from Dr. M:
1. There was absolutely no bony fibula present.
2. There was a weakened blood vessel down the front of her leg that could have caused a lot of trouble in lengthen in that it may have been difficult to get blood to the lower part of the limb.
2. There was a bundle of atrophied nerves in her leg/foot that would have been problematic in lengthening.
3. She was an excellent candidate for a syme's amputation, which, in her opinion, was done very successfully.
4. There is very little chance that the heal pad would migrate or that she would ever need another amputation surgery.
5. She would have done exactly the same thing was Dr. Mosca.
Tuesday, July 29, 2008
1. No, Tegan is best friend (when I suggested another friend to be the best).
2. I want to see Logan too (when Max suggested playing with Tegan).
3. Andrew's sad. (When discussing a child who fell at school. She said this about a hundred times over the weekend).
4. Doggies funny. Go Ruff Ruff Ruff. They're laughing.
5. It no works. (When pointing to her leggie) There is no foot there.
6. I no like tuna fish.
7. I love you, Daddy.
1. I have an idea (one finger up)
2. Mummy, I like blueberries. I like peas too. I like corn too.
3. I want a leggie too, like Madeleine.
4. I hears that. Is that a hellacopper or a hairpane?
5. It's dark. It's no light. The whole world is nigh-nigh. (This at 1 am)
6. Watch this, Madeleine. (doing anything silly)
7. Swiffer, where are you? (My son is obsessed with cleaning, if you didn't know that already. No one loves the wood floors at our house more than Max).