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Sunday, November 13, 2011

NHF Conference Summary To Follow

I apologize I don't have all of my meeting summaries posted yet.  On Saturday evening, right before the final night event at NHF, we learned that my in-laws house had caught fire.  We were devastated.   (as were they)  Trenton had been staying with them while we attended the conference in Chicago.  My husband and I feel very blessed that they were not home at the time and that nobody was injured.  We didn't arrive back in town until after dark this evening and have not been over to their house.  My in-laws will be living with us for a while.  They will need a new roof, carpet and many other things.  The fire department in Columbia did an amazing job of taking pictures off the walls and saving furniture. They did loose many "things".  They are just things and we are very happy, once again, that nobody was injured.  Tonight I helped my mother-in-law squeeze things into our kitchen that they had dug out from their house this afternoon. They went to bed early and I am hoping they will get some much needed sleep this evening.

I will try my best over the next week to post summaries of all of the sessions that I attended.  This was by far the best NHF Conference that I have attended.  I hope sharing all of the information will motivate everybody as much as it is motivating me!

Please say a prayer for my in-laws tonight!

Wednesday, October 26, 2011

Rough Time

The last few weeks (almost 6 weeks to be exact) I have had company at my house. I complained to any and everybody that would listen to me. During this period I also had many things going on in my work and personal life. I threw numerous pity parties for myself. (. . and probably consumed one too many glasses of wine! :)

This weekend I got over it all. Yes, the company left and that helped me "get over it" much faster. I was also reading post on the FB page "Hemo Friends" that I check daily. Some of the things that these families go through on a daily basis made me sit back and think how truly blessed we are. It also made me think about how I could turn my negative attitude into positive energy that might help other people.

I can't imagine infusing Trenton every day. I can't imagine him having a port or having a port infection. Inhibitors. .. . .would probably have to join the wine of the month club! Recently, we lost a member of the group. A young boy around Trenton's age passed away because he didn't have access to care and could not receive his factor fast enough. The love and support this group showed to this family made me cry. . . . several times!

The things that these Hemo Moms go through every day makes my complaints in life look like nothing. These women are strong, resilient and more importantly advocates for their children every day. Even though I have been active in the hemophilia community since 1990, I have learned more from this group in recent months than I have at some conferences.

I feel very blessed that Trenton has had so little incidents. Hemophilia is still part of our life. I still pray each night that God would look over him and keep safe. I realize, though, that we all have challenges in our daily life whether it is Hemophilia or something personal that is holding us back. What do we do with these challenges?

I know that next time I think about throwing a pity party for myself, I will turn to my "Hemo Friends" group. How can I support these parents and friends? How can I put my energy into something positive instead of a glass of wine?

I head to Chicago in less than two weeks for the National Hemophilia Conference. I look forward to gaining knowledge that I can bring back to this FB group and also bring back to the Midwest Hemophilia Association.


Thursday, July 7, 2011

Boy Scout Motto - Be Prepared

The Boy Scout motto is "Be Prepared". I was a Girl Scout for over 10 years . . . not a Boy Scout. When Trenton fell recently I was "not prepared".

When Trenton was first born I was your typical paranoid Hemo Mom. (even though I said I wouldn't be) I had a medical alert bracelet on him at all times and one on the car seat. I carried the factor in a cooler with us on any trip over 30 minutes away. I had several ice packs in the diaper bags at all times. I had medical information on the fridge. I had medical information in the diaper bag . . even the travel letter.

Fast forward almost three years .. . .

Trenton had a horrible fall recently. We were crossing a parking lot and he did a face plant. He didn't put his hands up to catch himself. His nose and lip took the impact. There was more blood coming out of my child's nose than you would ever want to see. His cute white frog t-shirt was a throw-away within two minutes.

I reached in the diaper bag to find one ice pack. . . that was so old that is didn't work! After we controlled the bleeding I tried to call the treatment center. I didn't have the correct number in my phone and I didn't have the nurse's pager number. After calling the hospital's main number and waiting on hold I was able to talk to the nurse.

We went home and dosed with Amicar for the mouth bleed. After I gave Trenton the dose I realized that it was expired Amicar! (Do you see where I am going with the "not prepared")

I can write another three paragraphs about what went wrong, but I won't. Here are my suggestions for the future:

If you have a child with mild Hemophilia, always be prepared. Don't become so relaxed that you think nothing will happen to your child. You never know when you will be in a car accident, or have a silly fall in the parking lot.

*Check your factor and Amicar often. If you have a wall calendar, circle the expiration date on the calendar and maybe the date a month before so that you can have some on hand.

*Always have your child wear their medical alert bracelet! If your son is young like mine, they won't be able to tell a paramedic that they have Hemophilia in a medical emergency.

*Keep your HTC's numbers close. I had one number in my phone, but not the right one. I now carry our nurses' business card in my purse as well.

*Have all emergency numbers posted clearly in your house. Our numbers are on a dry erase board on the fridge. I realized that I hadn't updated our nurses' name and that my mother-in-laws number was no longer visible.

*We still take factor on longer trips. I would recommend doing the same. Check the NHF website before you go on a trip to find out if there will be an HTC close by.

Please feel free to post more tips below!

Remember . . . Always Be Prepared!

It passed!

Today was a crazy day. My baby boy woke up with over 100 degree fever and it was raining outside. I ran into work briefly, but came home to be with Trenton. As we sat resting in the basement, I heard my phone ring.

"I have confirmation that your bill passed, " Jay Bryant-Wimp. I was so excited. The Gateway Hemophilia Chapter and The Midwest Hemophilia Assocation have worked for years to get the Standards of Care for People With Bleeding Disorders Passed. This year I feel I gave it my all. Mary (from St. Louis) had given it her all for two years and couldn't make the drive this year due to work. (She still worked on getting the bill passed from home . . don't you worry) I felt like it was on me to get this bill through.

So many friends, family, and people from the Hemophilia Community helped get this bill passed. I had classmates from Warsaw that wrote letters to the Legislators. (These are people that I haven't spoken to in over 10 years!) Many people gave up a day or days of work to come to Jefferson City. Many people brought their families from 100's of miles away to talk to their Legislators.

I am excited that Missouri will now have something "on the books". There are going to be many changes in the coming years and it will help to have this bill.

I'll post more details about the bill soon!

Tuesday, February 1, 2011

CSL Grant

In the fall I applied for an advocacy grant from CSL Behring on behalf of the Midwest Hemophilia Chapter. I am attaching the grant below!

Grant provides support for patient initiative to obtain passage of Standards of Care.

King of Prussia, Pennsylvania, January 20, 2011 – CSL Behring, a global leader in the plasma protein biotherapies industry and a subsidiary of CSL Limited (ASX:CSL), has awarded an advocacy grant to the Midwest Hemophilia Association (MHA) through the Local Empowerment for Advocacy Development (LEAD) program. LEAD grants support the grassroots advocacy efforts of organizations committed to helping people who use plasma-derived or recombinant therapies to manage rare and serious diseases.

MHA will use its LEAD grant to bolster legislative efforts in support of passage of Standards of Care for People with Bleeding Disorders in Missouri. In addition, MHA will start grassroots advocacy in Kansas and also help educate the public about women’s bleeding disorders.
“MHA is delighted to receive this generous LEAD grant from CSL Behring. This grant will help our ultimate goal to make all our members better self-advocates,” Kristin Marema, MHA Board Member, said.
LEAD grants total $500,000 since 2008
According to Dennis Jackman, CSL Behring’s Senior Vice President, Public Affairs, the company has awarded 33 grants totaling approximately $500,000 since the LEAD program was established in 2008. Almost $100,000 was awarded in the current grant cycle to six patient organizations including MHA.
“CSL Behring is pleased to recognize and support these organizations, all of which play a vital role in expanding patient access to information and healthcare,” said Dennis Jackman, Senior Vice President, Public Affairs, CSL Behring. “We hope that these grants will help improve the lives of people with bleeding disorders, immune deficiencies and hereditary angioedema.”


As many of you know, I've been working on the Standards of Care Bill here in Missouri. This year I've been to Jefferson City a couple times and already written numerous thank you notes. I feel like this is the year for Missouri! On March 1st we will meet in Jefferson City for "Bleeding Disorders Awareness Month". We are hoping (cross our fingers) that we will even get to meet the Governor! I would love to see many families come and show your support on this day! Because of our CSL Behring Grant your family might be eligible for mileage reimbursement. I'll post details on FB and here as they come.