The one week mark

Things seems to be doing good. Swelling is still there but I no longer look like a one sided 1/2 inflated balloon. I am approaching the "crucial" time where the last two surgery's the infection reared its ugly head. So time will tell.



I think what may be helping me is the liquid antibiotics I am taking. Last time they (the hospital) gave me pills which I had a hard time taking. I would have to crush them up and take them with applesauce or yogurt. Let me tell you no matter what you put it in they taste terrible. BLAH.

Tomorrow I head back to Hopkins to have my stitches in my neck taken out. The stitches in my mouth will degrade over time. I am still not sure if I will use Mederma or ScarFade. The one things I like is that Mederma has cream with SPF 30. Sun screen is key in the fading of scars as with sun exposure you risk that scar turning red or staying red. At least so I am told.

Rare Disease Day 2009

Just a reminder that Rare Disease Day is one week away.

Its over... I hope

I am home. The last few days seems to have come and gone so quickly. I was only in the hospital for a few days. I am not really in too much pain. Just very sore. The doctor gave me a liquid antibiotic so I can take it much better then a pill. I can not chew anything hard. A soft or liquid diet is all I can take right now. So mashed potatoes and oatmeal are my friends. The good side is so is ice cream. Yum.

I got into the hospital at 5:30am to prep for the surgery. I did manage to take some photos of before my surgery so I can compare afterwords.

You can really see my scar and the swelling that I had left.


They took me into the operating room while I was awake. I really don't know if this is a good thing or bad. Part of me never wants to see the operating table again. The other parts thinks its good to know what my surroundings will be. Guess the jury is still out on that one. But I did not have to worry too long as soon as they put me on the table out I was out in a matter of seconds. They did not even warn me. The next thing I knew I was waking up in IC Unit.


When I was wake enough the nurse showed me and my mom the plate. So this is it. I must say it is different from what I imagined. I thought it would be smaller or more flexible. Its very hard. Can not really make jewelry out of it like I thought. (HAHA) The color seems off too. I thought it was to be silver. Looks more like gold. Anyway. The doctor said that he tried to cut the plate out but he could not. Also that he had to take one of my implant studs out. It had gotten lose where my fistula developed and had to come out. He was not sure the exact placement of the implant but I would address that would Dr Sinada next week. I don't think I can recover that implant. I just hope it will not effect me getting my new teeth.

I really did not feel like doing anything. I did bring with me books and games to help the time go by. But all I wanted to do was sleep. Just sleep. I took a photo of my chin after surgery. I don't recommend anyone looking at it that can not stand the sight of blood. So be warned.




As usually my face swelled up like a big balloon. I am surprised that the side did not pop open. The above photo does not show it as the one below will, along with my new scar. I have to put bacterial ointment on it every day for about a week. No big deal. The doctor will take out the stitches next week. So I will need to stock up on Mederma or Scar Fade. But right now all I want to do is sleep. At least I am home.

It is Almost Time

Just a quick thought. In 4 days I will be at the hospital having my 4th surgery and hopefully my last. The happiness that I felt before is now fixed with trepidation. I am glad that I am having this surgery but I fear for the outcome. What it does not work? What if it makes things worse? What if...

Ameloblastoma Awareness Day

A lot of causes out there have their own day. Hey some even have their own Month. Why not Amelo? So heads up!! I hereby dub March 20th as Ameloblastoma Awareness Day. I picked this day for two reasons:

1. Its the first day of spring. Spring is a time of rebirth, renewal and awareness.

2. It was the first day that popped into my brain. Go figure.

Since this is such a rare disorder its good to make the world aware of it in some fashion or another. That is the great thing about support groups like the one I found on Yahoo! and Facebook. Its scary. I am not going to lie. It is why I and many others have made blogs about our experience. That and it's good for our sanity. Through education, research, advocacy, and support activities perhaps one day we can understand this disease or even stop it from ever happening.

Hopefully a very special someone will one day come along and starts a nice big foundation for Amelo. Until then, its up to us to spread knowledge and awareness. Tell your friends if they ever heard of it. Ask your families if they ever knew anyone with it. Google it. Just be aware.

UPDATE:

I just found out through Facebook that there is a campain for Febuary 28th Annual Rare Disease Day. So since there is already a campaign... so that is the new Day.

February 28th Rare Disease Day

This is from NORD

Rare Disease Day Partners

List of Partners to date

The Office of Rare Diseases (ORD) at the National Institutes of Health (NIH) and the Office of Orphan Products Development (OOPD) at the U.S. Food and Drug Administration (FDA) have signed on as Rare Disease Day Partners.

In addition, all organizations, societies, and companies working with rare diseases and/or orphan products are invited to become Rare Disease Day Partners. (For information on this, write to rarediseaseday@rarediseases.org). Partners are also being asked to:

* Write to their state governors requesting that February 28, 2009, be designated Rare Disease Day in their state. Click here to download a sample letter and sample resolution.

* Post the Rare Disease Day logo on their websites and in their publications.

* Make their members aware of Rare Disease Day. Sample Newsletter Story

* Encourage media coverage of Rare Disease Day by suggesting stories to their media contacts for that day or the week leading up to it. (NORD will provide a press kit soon to all partners that can be personalized and used as needed.)

* Share information about any activities their group may sponsor related to Rare Disease Day so that other organizations can benefit from reading about what they are doing.

* Share human interest stories about individuals and families affected by rare diseases to rarediseaseday@rarediseases.org, for possible posting on this website or for possible use by reporters covering Rare Disease Day.

* Nominate researchers to a Rare Disease Hall of Fame to be published on the website. This can be done by sending a brief (one page or less) summary of the what the researcher is doing, why it is important, and any results to date that have improved the lives of people with rare diseases. If possible, nominations should include a photo of the researcher.