Thursday, December 17, 2009


Reflecting back on a horrible month! this is 3 days after surgery

This was 2 weeks after surgery. We removed the stitches and had to adjust the pin since I kicked it further in to my foot.

This is one month after surgery. We removed the pin about 1 minute after this photo. This is at the 4 week mark. Stitches area has healed up nicely. Foot looks like a zombie foot.

Finally - The pin is out and 24 hours later I was allowed to shower! It was the best shower I've taken in a very long time!
Walking is still a challenge and I am not supposed to do much on it yet. She wants me in sneakers full time by January 15th.
Thank you to my mom for taking me to my appointments and holding my hand while the doc pulled the pin out.

Tuesday, December 8, 2009

S.W.A.N - Syndromes Without A Name

I was doing a survey for NIH and at the end it had two links where you can go for help. One of them was for genetics testing - which so far this is not genetics. The other was for SWAN - Syndromes Without A Name. I went to their site and it's very cool. I immediately joined up and found them on Facebook so I could stay up to date.

Even though we have a diagnosis or whatever it is - I think this is a great place for us mom's to join and check out. After all - a syndrome is just a big group of symptoms.

Our doctors told us before - they don't care what everyone wants to call the syndrome - they can call it Haven's Syndrome if they want. The most important thing is to stop her from progressing and give her a long life.

Tuesday, December 1, 2009

Jacked up

Today was horrible. Well it actually started a couple days ago and then last night I was up almost all night with severe pains in my big toe. The nail has been burning cold and feels like a knife is stuck in it. Burning cold is a feeling like I have IcyHot on me. Then it's so numb on the top that I can't feel when I touch my toe. I was extremely worried that there was an infection.
So I got in to the doctor today and we were unwrapping to get the stitches out. I described my pain to her and when we got to the pin gauze it was covered in blood. Which it shouldn't be at this point. She looked at me with that doctor look and said I had pushed the pin in to my foot. I probably did it with one of my many falls - who knows. But this is why it was hurting my nail.
Before I could even think she grabbed the pin and started pulling and wriggling it. All I could do was hold my breath and cover my eyes. It hurt and hurt and hurt. Then she snipped the ends of the stitches and pulled it through from top to bottom....that burned! I've never had stitches before and everyone always said they didn't hurt - but these did!
So I took some massive pain pills and passed out for a long time. My toe is still in pain but she said it should calm down by morning.
Official pin removal date: December 15th!!!
I'm excited to get the pin out and at the same time I'm terrfied. I'm going to be awake and have to see it. Gives me the willies just thinking about it.