Migraines

I have migraines, I always have. My mom has them and it wouldn't surprise me if my sister has them too. I remember the first time I had one. I must have been going through puberty since I remember it to be Junior High (what a rough time that was!).

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.

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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.

Pee Pee

Guess who went pee pee into the pink potty tonight. Yeppers, my son Max. He used our pink potty to make pee pee before his bath (pronounced 'bapth' if you are a Meyers Twin). I was so proud of him I jumped up and down like it was a potty party. Let's see if it happens again.

New PJs, Monsters and such

We had a visit from Uncle Ted this past week. Unfortunately Auntie Marthie couldn't make it but she sent her love and some special gifts.

Madeleine hugging her new Monster vigorously.
Having Pizza on the picnic table.
Maxy showing off his new Monster.

New PJs! Madeleine talked about the birds on her new PJs and didn't want to take them off. In fact, she wore the shirt for two whole days! Max also loved his PJs and kept pointing out all the "Robops" on them!

*Photos courtesy of Uncle Ted.

Help me find helper legs

As Madeleine becomes more aware of her leggie she tends to look at others to see if they have a leggie too. Sometimes we notice that some pictures of kids look a little artificial and their legs appear to look a little like leggies.

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......



Thank You.

Acceptance

This photo is taken from Kristina's blog.

I love this image.

Siffies and Musgick

My babies are growing up. sigh. They are in the full two years old mode now. They talk, they walk, they climb, they hit, they yell, they scream, they tantrum (Madeleine particularly) and they give very sweet kisses.

Max talks like he has been doing it his whole life. He narrates everything. Yesterday I heard him in his bed ask Madeleine if she wanted him to sing Row Row [your boat] or Round and Round [the wheels on the bus go]. She chose Round and Round. This is how it went:

"Madeleine, you want row row or round and round for singing?"

Two days ago he gave Madeleine a broom and said:

"Madeleine, here, Madeleine, you sweep, you clean up, like this (demonstration) and I vaccuum. There, all clean, good job Madeleine!"

Earlier today Max said:

"Mommy, I'm poopy. Max pooped. You change diaper. Okay, Mommy? Okay?"

Madeleine talks a lot but she isn't as conversative as Max. She does say funny things and she certainly can tell me what she wants. Usually it involves seeing Tegan or Logan or going to the pool or putting on her bathing suit. She often talks about her leggie. Lately we have talked a lot about Oscar Pistorius. Madeleine calls him Oscar or Guy with Two Leggies. She says that she can run fast like Oscar but she only has one Leggie. It goes like this:

"Guy with two Leggies, run fast! Like Madeleine, Madeleine run fast with one leggie too."

While Max is my talker Madeleine is my mover. Seriously folks, my kid can climb. She can run. She can swim. She has now mastered jumping. Oh sure, she can jump in place, hop and jump forward. She can stand on one leg (either her leggie or her actual leg, she can do both) but she can also jump off a step, curb, block, stool, anything. I watched my girl launch herself from a height of two feet today. She landed mostly on her feet and popped up to do it again.

So, how do I know that my kids are still babies? Because Max still calls Fish Siffies or simply sif. awww. And Madeleine will request Musgick meaning music.

Imagine Part 3

Imagine that during your entire pregnancy you hoped, prayed and almost sold your soul for your child to be a candidate for 'correction', reconstruction, normalcy. You wished for the most mildest case. You wanted the 'un-clear-cut' situation where you could make a 'choice'. Where you could lengthen the leg, save the foot, restore normalcy.

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.

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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.

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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.

Background:
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.

Phew.

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.

Cheers.