Foot doctor

So yesterday was my 4 week since the last visit - visit! I really thought I was doing pretty well. I stopped taking pain meds after the big snow - it was tough shoveling with a broken foot!

My foot is still swollen and bruised at the incision site and especially where the pin was is very tender. I have been trying to exercise it as much as I can but it really hurts to bend my toe. Even when I walk I push down on it.

With only a couple weeks until Disney I have to be ready to walk for hours every day. The other night I bent it so far and cried through the pain that it even popped. Which felt good but I don't know if it was good.

After X-rays yesterday the doctor came in to ask if I was still in pain. Of course I am but it's tolerable. She put the x-rays up and it seems that my foot is still broke and she showed me the two fractures that aren't healing as they should be. She said it may take about 8 months to be fully back to normal.

I try to keep my shoes on but I don't like wearing shoes in the house for Haven. Doctor said I must always have them on if I want it to heal - I definitely don't want it pinned again.


Other than that I sleep a lot!!!! I barely have time to update Haven's page because I'm most likely sleeping. I've been on medication since October for migraines, foot surgery, eye infections, endometriosis, and insanity.......I'm barely feeling human again!

PIN HAS BEEN REMOVED

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.

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

http://www.undiagnosed-usa.org/

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.

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.

Thanksgiving

Hope everyone has a great Thanksgiving.

Everyone on Facebook has been doing their daily things they are thankful for....so I made a list of some...but not all....

1. my sudden decision to move to CA at 21 with no family, meet some boy and get married - without this I wouldn't have my Haven.

2. Johns Hopkins - without their knowledge and skills I probably would've lost my baby.

3. Kris - taking care of Haven 24/7 for the past 2 years and if he wouldn't have been able to take over 100 days off this year and get Haven to the hospital I may not have my baby.

4. ROHHAD moms - without the strength of these mom's and the shared stories of their children I probably would've succumb to a mental breakdown.

5. Friends, Family, and Strangers who have taken the time to learn about my daughter, her illnesses and have stopped for a few minutes and sent me encouraging words or letters to my daughter.

6. The company I work for - without their understanding I would've missed the most precious moments with my daughter that I could never get back.

7. Child foundations - without many of these we may not have been able to get through the past 2 years - Casey Cares, Matt's Helpers Foundation, Make-A-Wish, Believe In Tomorrow, Make A Child Smile

8. Family for giving everything they could to Haven - paying for over a year of Lauren to be with Haven twice a week, working with home nurse to get a grant for Haven, custom made clothing, coming out to spend time with Haven and making her laugh, taking Haven when we need to get errands done....just everything

9. I'm very thankful I do not have to drive anywhere for the holidays - instead I only have to walk about 20 feet and get some yummy food.

10. Thankful my mom has made 2 turkeys and 1 ham this year.....now my dad won't whine that everyone takes all the leftovers and he doesn't get any.

There are a million more......

Immobile

I'm done with the confinement of the couch and elevated foot! I have fallen at least one time every day since surgery. Yesterday was the worst. Trying to go to the bathroom is HORRIBLE! I took one hop in to the bathroom and BAM was on the floor. I was caught by my knee on my good leg --- today it has a huge black and blue bruise! Not to mention trying to pull your pants up while balancing on one leg and knowing a tub is on one side of you waiting for you to fall in!

This morning I woke up in a lot of pain but it wasn't the normal areas. Usually the pin is the most painful area and the area between the big toe and 2nd toe - that's where she cut away the "soft tissue". Today it's the side of the foot that had nothing done to it. I pulled the gauze up a little bit so Kris could take a peek and his face was enough. He said it's practically black from bruising.

I haven't had a pain pill since last Thursday but I took one today and am waiting for it to kick in. Kris requires that I do not open the computer for the first few hours of the pill. I wrote an email to Haven's doctors while loaded on meds and the doctor told Kris he didn't know how to respond. So I will sleep.......

Nikkideez comes this week - we will go to my mom and dad's on Turkey day. They are cleared to see Haven that day.

I got some get well cards from my aunt Candy and Grandma today --- that was very nice! I'm so used to Haven getting mail I gave them to her and she said they were for me.

I'm also selling some stuff on Ebay and am excited to do so. You can pick a charity that you want to donate a percent of your earnings to. I checked and one of our favorites was on there. Casey Cares Foundation. I was looking for Matt's Helpers Foundation but they were not on there. So right now 10% of my ebay goes to Casey Cares!

Casey Cares sends Haven tickets to parks and concerts, we've received restaurant gift cards, Halloween t-shirts, and an awesome Casey Cares t-shirt.

Matt's Helpers has been there from the beginning too. They have sent us money, gift cards, and gifts for Haven. Just recently they sent us $200 in gas cards. THESE ARE AWESOME! Kris is the only one that uses these. The only place he goes is Hopkins so one tank of gas lasts him 2 - 3 weeks. So these cards will last a few months.

THANK YOU EVERYONE

RARE DISEASE DAY 2010

Post from NORD web site:

Official U.S. Rare Disease Day Website to Launch Soon

As the sponsor of Rare Disease Day in the U.S., NORD has created a website where activities and events for Rare Disease Day 2010 will be posted. Watch for the launch of this new site soon.