madeleinisms

Funny things Madeleine has said in the past week.

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.

Maxisms

Funny things Max has said in the last week....

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).

#1 Birthday Present

Of course my children enjoyed all of their birthday gifts. And I am publicly thanking all of you who have given them gifts. My apologies for not sending out proper Thank You's, I've been a bit busy....

You know, though, that there is always a gift or two that are the favs. The one that the child plays with a little more frequently, talks about more at bed time and the one that gets a bit more wear.

We often have to take our babies for a walk. We take them to the post office, around the block, to the restaurant, and here we are at University Village with our babies in tow.

House

Back Patio view.
Kids playing in their water table

The Settlers

I know, I know, I owe a few photos of the kids, the house, Michael's new haircut (just kidding). First an update...

We are completely moved into our new house but not even close to being unpacked and settled. Phew, it was a lot of work. Note to self: Next time hire movers...

Although the Ms love the house (They have even asked if we get to go to the 'new house'. I tell them over and over that the new house is now our house.) they are not sleeping so great. I'm that the adjustment to their new room is difficult but I also think they can 'sense' that things are chaotic and influx.

On the upshot....
Michael and I are digging all the space we have! The kids are digging the yard. They love hanging out, eating their breakfast on the awesome new picnic table (a gift from Brooke, Travis and Tegan), playing with their fantastic bubble wands (courtesy of Joy and Sofia) and their trikes. On warm days we fill up the pool (thanks to Jenna, Brad and Logan) and cool off in the hose.

I'm not sure how we ever did it without the space of the house and the yard to walk in. This morning we collected pine cones that had fallen from the trees. Sometimes we pick weeds and dig in the dirt and today it was a real treat when daddy mowed the grass.

Our backyard and patio is now a toddlers dream. Thanks to Mommy's attentive thrift shopping I have equipped our space with a sandbox (we have yet to put the sand in it though), matching pink and blue toddler scooters, and our newest edition. I step 2 climber with slide. Madeleine was calling it "the playground". Too funny. My poor deprived apartment kids!

As with everything there are downsides. Pros and Cons.
Pros:
-more space
-no shared walls
-no carpet in the main living spaces (makes messes clean up easier)
-Huge playroom for all the toys so that Michael and I finally feel that adult space is adult space and kid space is elsewhere
-grass and gardens
-patio that gets a lot of light
-pulling into our driveway
-quieter street
-a hose
-a mud room
-new counters, cabinets, appliances
-Helpful fun neighbors with fantastic kids!
-walk in closets

Cons:
-old house makes picture hanging difficult
-old house is creaky
-being a street level takes a while to get use to
-finding out our house use to be a 'crack house' or had some other creepy illegal activity. uck.
-funny smells
-with so many trees around the house can feel dark (a pro is that it stays very cool)
-bugs

You have to think that we use to live in a building that was built in 2000 and this house was built in 1930. Still the pros outweigh the cons.

Imagine Part 2

You have four treatment options and all of them are less than desirable. The first option is to do nothing which isn't a good option as your child will have a hitch in their git along and this will cause more pain and discomfort in the long road. I'm sure that this is what was done a few hundred years ago.

The second option is reserved for very minor cases. There is no surgical intervention but rather the patient is fitted with orthopedic devices to stabilize the leg, ankle, foot. A shoe lift is implemented to bridge the limb length discrepancy. This is the option I hoped for. But Madeleine simply was not a good candidate. Really can you imagine operating a vehicle, be it car, bike, scooter or trike, with 5-6 inch shoe lift?


The third option comes into place when the problem is not super severe. If there is a good foot and a good ankle and some other preferable anatomies the leg can be lengthened. I haven't talked about that much on this blog since it is obviously not the option we chose but I will try to explain it as best as I can. Basically the child undergoes surgery to reconstruct anything that needs reconstruction. This can include osteotomies (bone cuts and correction), moving muscles around, cutting tendons, whatever. Then the bone to be lengthened is broken and pins are screwed into it. The child wears a fixator and the pins are turned daily as to stretch the bone and make it grow as it heals. This option is more of an 'option' when the child has a fully formed foot, a stable ankle and other anatomies.

The fourth option that can seem more 'severe' or 'drastic' is amputation. You can imagine my horror when this was mentioned as a form of 'treatment' for fibular hemimelia. Try to picture your child as an amputee! As it was explained to me while I was pregnant, "we can grow bone forever but asking the muscles and tendons to do the same is a whole different story. Sometime amputation as reconstruction is the best option".

Imagine that you are faced with these choices. One and Two are obviously not great options. You need to choose a treatment. You need to make this decision for your child. Yes, it is life altering. Yes, your child will never be the same physically (and dare I say emotionally) either way. Surgery is involved. Hospitalization is involved. Pain is involved. Stress, emotion, tears run wild in your mind. What do you?

Do you wait and see? A treatment option that many parents choose.
Do you consult all the doctors you can find? Seek a second, third and sometimes fifth opinion?
Do you travel to new hospitals, countries, conventions?
Do you read every newspaper article, medical journal, Internet site?
Do you consult other parents who have gone through this?
What do you do? How do you decide?

Imagine that every time you mention this 'decision' to others they gasp in horror. They tell you that they hope you will seek another opinion. They apologize and again you see the look in their eyes that tells you that they are so glad this is not happening to them. And somehow, you feel ashamed, like you did something to cause this. Like it is your fault.

Some have mentioned that only if the foot is really 'non-salvageable' should you amputate. Some have said, "I cannot imagine cutting off a piece of my baby". Like anyone can imagine that! Some have said that if you don't have solid financial resources amputation is your only choice. As if any parent would let money stand in the way of getting their child the best treatment.

__________________________________________

Unlike many parents I knew that Madeleine had Fibular Hemimelia before she was born. I read the articles, searched the Internet, contacted families, consulted doctors and worried more than any mother should. I also prayed. I prayed hard that my baby would be a candidate for a shoe lift, lengthening, maybe she would be fine...

Tenderness

Thank you to Cheryl who took this lovely picture and the one in the header. Cheryl, you have given me a tremendous gift. Thank you.