Fundraising and how your money is spent.

Each and every day I try to do something nice for someone else. I don’t have to know them, I just have to care enough that they get that small thing they are needing. When I fundraise for the Hemophilia foundation I know I’m doing just that. With the money they receive they do more than just look for a cure.

They supply families with helmets, knee pads, elbow pads, medic alerts, gas cards to get to appointments and factor for emergencies when insurance craps out (and it does crap out).

They have a summer camp for the kids with nurses on staff and a day at sea world so families can find support in other bleeder families.

They do not sell merchandise or fundraise to pay for the next fundraiser but rather give hemophiliacs scholarships to go to college and caregivers can receive scholarships to go to college so they may enter the medical field.

I am 100% behind this organization because they care about the people who make up their cause. These kids go through a lot before adulthood and continue to battle, with our Hemophilia foundations that battle is the tiniest bit easier.

 Do a small favor for someone you don’t know and donate. Even a dollar adds up if enough people care to give one.

Tattooing and Hemophilia

Jami's memorial tattoo for her brother who died due to AIDS. Beautiful.

Tattoos are a connection that everyone, in every walk of life can share. Yes, they have a stigma attached to them but they are also a form of self-expression that fuels my desire to cover myself in them. I remember watching my mother getting tattooed when I was small. More clearly I remember that anticipation building to get my own. Sometimes a tattoo is on a whim and lives to be regretted or lazered off; more often they are a memory. I live knowing that one day my sons will look at me and likely feel the same anticipation I felt as a child. This is the point in my little ramble where I expect people to be looking a little worried. Heres the truth: I would never forbid it. No I wouldn’t sign at the minimal age for him to get one in his teens. I wouldn’t approve of say a swastika on his forehead, but I certainly would not tell him no. With proper prophylactic treatment and a whole lot of determination the outcome wouldn’t be horrible. I know that I would want to be there and there would be a lot of research put into finding a reputable artist that is willing to tattoo a hemo but if he’s serious about a tattoo then all I can do as a mother is be serious about keeping him safe. Granted we have a long ways to go before any of this becomes a shadow of a thought but it is best to go into things knowing how you feel. I decided to ask some of our hemophilia community how they feel about tattoos and I got an overwhelming Yes! Which was freakin awesome. I asked a few to share their stories with me so that I could share it with all you. Hold on to your seats folks, this was my first ‘interview.’

Felix was kind enough to be one of those people who shared their story

Did you need to infuse before, during, and after?

Grumpy on Felix's arm. Love how he's wearing a Grumpy shirt also. I can dig some Snow White love

My first tat was not exactly planned. I had infused the day before, then I infused after. The second time I did an infusion right before then the day after to be on the safe side.

Do you think receiving prophylaxis better prepared you for the feeling of being tattooed?

I’m sure the fact that I maintain good factor levels was helpful.

How many do you have?

I have two tattoos. A Felix the Cat on the left arm and a Grumpy on the right.

Did you need to have multiple sessions or was it better to do all at once?

 I did them both in one session each. If they were full arms or large back would get multiple sessions.

How did your parents and doctors feel about your choice to be tattooed?

 I got my first tat in my early 30’s and did not seek approval from my parents (wouldn’t have gotten it anyways), and I don’t ask permission of doctors for anything either. I know my hemophilia,and I have had more serious things happened to me just going to work.

Were there any complications during the healing process?

Amy's memorial for her father.

 No complications for either tat.

Was it hard to find an artist that was comfortable tattooing you?

 I used two different artist, and neither one had an issue. As a matter of fact one of them said that they worry more about someone with Hep C than people with HIV or Hemophilia. I thought that was interesting.

Were you forthcoming about your severe hemophilia and what that meant in relation to being tattooed?

I was honest and had no issues with the process or the artist that did them.

I figure if our younger guys infuse to play soccer and other sports, I get to use it for body art. My doctor doesn’t have to agree, and if he or the HTC have an issue they will just have to get over it. Advancements in treatment are for us to lead “normal” lives. We as individual get to decide what that “normal” is.


The second person I thought was especially interesting was Cheryl. Cheryl has von Willebrand’s Disease, which I haven’t spoken much about on here but do plan to get to soon. She was diagnosed with this after getting her piercings and so I’m sure didn’t think too much of them. She does plan to get a tattoo in the future and she says it will be HUGE. I sincerely hope I get to share a picture of it with you guys. As for her kids getting tattooed she’s cool with it. (Awesome mom) She says she would sign for it and be there with them and that her husband would be on board as well, maybe not 100% but still supportive if that is what the family is wanting.

Jay, who writes, lent his experience also.

Did you need to infuse before, during, and after?

    Before and after. I got the majority of my tattoos the day after a profy dose and then infused immediately afterwards.

Do you think receiving prophylaxis better prepared you for the feeling of being tattooed?

    I fall asleep during tattoos. In fact, I fall asleep just hearing the tattoo gun. I don’t feel them at all.


How many do you have?

    6 individual tattoos and the beginning of a 1/4 sleeve.

Did you need to have multiple sessions or was it better to do all at once?

    My 1/4 sleeve is being done in multiple sessions. For some reason the ink isn’t staying on that arms as it did with my others.

How did your parents and doctors feel about your choice to be tattooed?

    I’m 39, almost 40. I didn’t really ask ahead of time.

Were there any complications during the healing process?


Was it hard to find an artist that was comfortable tattooing you?

    No, I was friends with both of my artists prior to getting any of the tattoos so they knew enough about my hemophilia to be comfortable with tattooing on me. Both artists insist that I be infused prior to them starting the tattoo.

So, the general idea from everyone is that tattoos and piercings are ok, as long as you are properly taking care of yourself. For the women who didn’t know they had a bleeding disorder it was an issue while the men who were already treating didn’t have a problem. I hear of some men with hemophilia that have more tattoos than I do, one of them is even a tattoo artist! Most moms recognize that their children will grow up and get one if that’s what they want and I’m pleased to report that they are looking to educate their children rather than scare them. No matter who you are you should be careful when getting tattooed or pierced. If the artist is not a good one you could walk out the door with something that looks mediocre at best but by researching where you are going, reading reviews, and asking people you trust where they get their body modification done I’m certain anyone can safely get a picture they’ll wantto carry on them forever.

alise grave nil-No burden too heavy for those with wings

Thanks to everyone who helped me out with this one. It is my first interview and I love that so many in our community were willing to give me the tools I needed to write it. I look forward to writing so many more posts with your help (and hopefully I get a bit better at the interview part as time goes on).

We Took A Vacation!

I spent the week away from my kids. Yes, the whole week. My husband and I took our first vacation together-a cruise to Mexico. We dropped our boys off with family, got a more than sufficient supply of factor to send with them, packed a couple of bags and left our Mommy/Daddy personas behind.

Anthony was so thrilled that I met Kung-Fu Panda.

To be completely honest, after the first day I missed them like hell.

It was nice staying out late and speaking to adults, I won’t lie. However, I couldn’t help but allow the ‘Anthony would dig this.’ thought to darken my vacation. By the last day we were more than anxious to be back in the States playing peek-a-boo and arguing over whether or not he can eat peanut butter and jelly for every meal.

Sam and I in Cozumel.



I completely understand why parents go on vacation without their kids; I’m sure this won’t be our last ‘adult only vacation.’ But I also believe there needs to be middle ground. Whose to say my boys wouldn’t have LOVED being able to see fish under the clear blue water? Wouldn’t Anthony have gotten a kick out of kayaking? I’m fairly certain Michael has acquired a taste for sand and I could have helped him broaden his horizons to different types of sand! What I mean to say is that at the end of this all I am counting down to my next vacation, but I’m also planning on packing 2 more bags.


We Watched Bad Blood:A Cautionary Tale

I’ve been meaning to watch Bad Blood:A Cautionary Tale since it made its appearance on Netflix. Today I did. I am glad that I watched it….and I bawled my eyes out. Those poor people were being infected with HIV, AIDS and hepatitis through their factor. This medication that the world had waited for to make a better quality of life for hemophiliacs became our very own holocaust. The FDA, doctors, government, Red Cross, ect knew that there was a definite possibility the blood supply had been infected with AIDS and they continued to produce it. They were receiving the blood from not only blood banks that paid cash for donations in seedier parts of town but prisons as well. After cases began popping up around the country these masters of the world sat down and debated what to do with the tainted product and after many a debate they decided there wasn’t enough data to prove anything. Enough data? Lives were being lost! After all was said and done and enough proof pulled the factor off the shelves hemophiliacs began fighting for restitution from the American government that had failed them. It took 6 years for families to receive a ‘Compassion’ payment of $100,000. Compassion payment?!? Like they didn’t do anything wrong?!? Other countries put doctors in jail and Japan even made the men responsible bow down to mothers of infected children and apologize but here in America a compassion payment was sufficient. Did I mention we were sending AIDS around the world to give to other children? For shame. Lives senselessly lost over something as stupid as money. Not wanting to lose profits by pulling bad products off the shelves, or pay to check for infection in the blood they were harvesting from places like prisons. Human beings that could have been someone were snuffed out by this gross abuse of power.

Not only should people watch this because it is yet another piece of American history but they should know that something like this can and will happen again if we, the people of all nations, allow it to. Knowledge is power.

No Asthma Here.

Pulmonary doctor this morning. Finally. The verdict is in. Anthony does not have asthma! A slight pollen allergy (but who doesn’t?) So happy that my Guy is getting all fixed up! He’s on a steroid and an allergy medication to get his cough under control. Hopefully now all our obstacles have been eliminated and he can have his teeth extracted.

My Recent Findings-Brain Bleeding

Recently in my internet explorations I came acrossed a little boy named Eli who has suffered a brain bleed (my own personal worst nightmare). He received surgery and is now recovering. The most warming part of this story has been seeing the photo of his mama finally being able to hold him. Since reading about Eli I realized that brain bleeding isn’t something that I was really told about. Of course its been mentioned in passing and I’ve known that it could happen to my own little boy but I’ve never before taken the time to read about the signs and possible outcomes of a brain bleed.

Symptoms include

  • irritability
  • swelling of the head
  • irregular breathing
  • sleepiness
  • a headache suddenly followed by vomiting
  • seizures
  • a lack of response.

I’m sure there are more symptoms but I didn’t happen to come acrossed them. Sometimes it takes a few days to see the signs of a brain bleed because there isn’t enough pressure on the brain to cause a noticeable problem. Your HTC can give you their procedure for a situation such as this but personally I would notify Anthony’s doctor while en route to our children’s hospital. Brain bleeding can be caused by a vaginal delivery during birthing, a fall, a traumatic head injury, and of course it can be spontaneous.

Most importantly, and I can’t stress this enough, if you want to know all the information on this do some research or ask someone who has a degree that qualifies them to talk about a medical condition…like your doctor.


Children should be wearing a helmet during activities such as but not limited to skateboarding, bike riding, roller blading, horseback riding. You get the point! Often times your local hemophilia foundation will help you get a helmet and pads for children who are still toddling to wear around the house during playtime. Should definitely get into contact with local chapter and ask about safety options for children.

We are families with children. We should be aware enough to make life safe for them. Theres a lot to learn but luckily we live in a time that has made the world smaller and information a whole lot easier to come by. Take advantage of the resources out there and let’s make these kids have the best childhood possible.

Get your girls tested! When I was little we all thought hemophilia hadn’t continued in the family, that is until a cousin was born with it. Still my mother felt like we were safe. Then I had a son with it. They tested Anthony TWICE before they were certain that he was severe factor 9 deficiency and yet they let Michael off the hook with only one test (which they weren’t able to get enough blood for as the prescription required) Be fierce! YOU are the parent, YOU are the customer. Within reason of course! You need to make sure that all the needs you have for you child are met. Have a question? Ask it. Have a concern? Voice it! You don’t have the luxury of being a quiet soul when it comes to medical care. My last bit of advice is to build a support system. EVEN IF YOU DON’T HAVE FAMILY! Get out there and bring people close to you. Sometimes you just need someone to help pick up that extra slack that a child, any child, brings.

Of course there can be complications of a brain bleed both long-term and short-term. I won’t pretend to know all of them. I do know that my own cousin suffered bleeding to the brain after a car accident (this led to us discovering his hemophilia) he now has limited short-term memory. I hear that after a brain bleed you are more likely to have more brain bleeds. I’m sure this varies per case but any questions should be directed to your HTC.

My Mommy Rant

Snuggled with his Panda pillow pet. (Almost 10am now) Good thing he snores like a lumber jack or I'd be a little worried about him.

I think we’re skipping swimming lessons this morning. Why? Anthony is still in bed. This isn’t outrage, this is shock. He wakes me up every morning at the crack of dawn and here we are; the sun shining, 9:32 am, a really beautiful Florida day and he’s in bed sleeping. Must really not be feeling well.






Michael however is next to me, fully awake with a ring of thrown toys surrounding his high chair. He has 2 top teeth coming in (again at the same time) and decided flinging peaches at me would make him feel better than eating them.

Nemours finally called this morning about a pulmonary doctor.


My hair is a mess.

I haven’t had my coffee yet.


I have a mountain of homework I need to crawl under. And my house needs a good cleaning. Some days life is just a little bit overwhelming. Throw in an ear infection and a surprise infusion and my day planner has gone from color coded beauty to chaos that resembles a foreign language. Madness I tell you. The natives are taking over!


So there you have it. My Mommy rant. Ever feel this way?

Indoor Adventures


We’ve been feeling better around here but it’s of course raining outside. Indoor fun! We did something today most mothers would cringe at. Something I, myself, have gotten in trouble


for doing. We painted on the walls. Ok, the pantry doors, but my Dad would have had me scrubbing them clean all the same. Our dining room is a place for family, we talk about our


day there, spend a meal there, I hang up all Anthony’s artwork there. It just seemed off that with a family as colorful as ours the dining room could be so bland.