Face Lift ..Hemophilia Moms Website

Good Morning everyone, I would like to be the first to welcome you to our up dated website.
please visit it at hemophiliamoms.com

you can meet all the moms and read stories about their experiences and share some of your stories as well

I am looking forward to some new Hemophilia Moms events coming up this year, the new website has a calendar showing up coming events

I hope to see as many of you as possible at these events

Rhonda

Challenges of Infusing without a port

I'm going to make this as simple as possible. We recently had our six year olds port removed because it was infected. (That is another story) We're having a terrible, stressful time trying to infuse him. His veins aren't good and he's terrified of needles. He just got to the point at age six to let us infuse him in his port. It has caused the whole house to be stressed and at times yelling. We can't yell, I don't want this to be a punishment because we can't infuse him. He just cries and won't sit still at all. We've had to lay on him and then miss. When he stresses and we stress it doesn't work. I did get his vein once and he had the biggest smile on his face like it was Christmas I, went in the other room and cried. It has been emotionally and physically hard for us all. Anyone have any good ideas of how to get his veins to come up and help him not to be so stressed. We're trying more water and a heating pad. A favorite tv program won't do the job. His focus is on the needle and nothing else. On top of it all the poor baby has been in the hospital since school started 23 days. It's been a rough year. I plan on blogging about his experiences with the frequent hospital visits.
Thanks,
DeAnn

Neighbors

I received an email where a family had problems with the neighbors thinking that thier hemophilia was contagious. Has anyone every had this problem before, if so please share how you handeled it

NHF - New Orleans - WOW

Just wanted to share with everyone the excitement and friendships I experienced at NHF this past week. My dauaghter, Kristin who also has mild Hemophilia and I traveled to New Orleans on Sunday.. We went early so we could spend some mom and daughter time. We visited the swamp, toured the city saw all the sights, including Katrina disaster that is still very real there a lot has not been rebuilt. We really ate and drank our way throught the city. Since We were there early we were invited to the JNC AWARDS DINNER the JNC is the Junior National Championship that goes on during the summer months and the winners are brought to NHF as a prize and receive awards at a banquet ...Congratulations everyone who participated
NHF officially started on Thursday, they had many sessions that day prior to opening meeting.
If you have not been to NHF you need to go at least once. There is never a stranger. Everyone one there is connected to the Hemophilia Community.
Thursday evening the exhibit hall opened and the manufactures, home care, agencies and chapters have booths with tons of information, friendly faces, answers and fun stuff for you to take home. I got a tatoo at the CSL booth.. I sure have had fun with it these past few days. ok it is not real, and about to come off but it was fun, that was just one example of fun.
I attended sessions durning the day on Friday, many sessions were available to choose from, something for everyone and that night we attending the Unity Jam where Suzanne and I were there for the Hemophilia Moms and visted with many family's while they had fun listening to Music,playing games, eating, dancing and just plan having fun, making new friends and building relationships for life.
Saturday was the last day, with more sessions, more food of course, the awards luncheon where people in our community are reconized for outstanding accomplishments. The exhibit hall was open also on friday and Saturday giving everyone time to visit and revisit those booths and make those releationships. Saturday night in the final night event and it was at the New Orleans float Factory, more food, friends and fun for all.
It is allways sad in a way on Saturday because Sunday you have to go home. But you always take back with you more knowledge, memories, and new friends and renewed friends tell the next year. Keep in touch with those friends by face book, our blog and sometimes just give them a call and say hi, you are allways welcome to say hi on my facebook page as well

I am looking forward to next year in November again in the Windy City Chicago, save your pennies and see you there

NFH New Orleans

Hello everyone out there Suzanne and I are at NHF 2010 in New Orleans tonight we are at a rock and roll party with CSL and about 500 guest enjoying fun and eaducacation .. please join us in sharing information we learned at NHF this year

Hemophilia....It's a Small World!

I have been working at my sons high school selling their school logo clothing. Yesterday something made me walk down to the office to say "Hi" to the ladies. When I walked in one of the ladies started crying. When I asked her what was wrong she said that her best friends son had just been diagnoised with hemophilia. She said when she say me she was reminded of my boys and how "normal" they were. She had been feeling so sorry for her friend and not knowing what to say or do for her. Seeing me reminded her all she needed to do was be her friend!

Everyone around us has a hard time when a child is diagnoised. Hearing of someone going through the beginning stages of a diagnoises brought me back to my sons...all 3 of them. There are not many kids with hemophilia in the US but we sure have a way of finding one another and supporting each other! We are a family!

I hope you all are enjoying your summer!
Lori

Camp

I am on my way to pick up my son from Hemophilia Camp
He is 16 and this is his first year as a CIT counselor in training
As you can see Camp is forever
He as attended for 10 years as a camper and now he is continuing as a counselor
At camp the kids make friends for life, friends that understand, share, comfort, build up, give back...friends that make life a better place

My daughter attended camp as well, has been a couselor and mentor
I think community service is important to raising children and if they can do it doing something they love and enjoy it is a win win

I hope everyone was able to attend camp this year

Sharing

Please everyone share a summer story with us. Remember when you were in school and you had to share a story about the summer vacation when you came back to school? It was fun even though we complained about it. Take a couple of minuets and jot down a story about your summer. I will look forward to reading them all.

Are You Ready For School?

It seems like my boys just started summer break! This summer has truely flown by!

Now it is time to start thinking about getting the boys ready to get back to school. Of course there is the school supply shopping, the clothes shopping and the shoe shopping. There is also the hemophilia side of getting ready for school. Meeting with their teachers, the staff in the health office & front office and of course meeting with their counslors to insure their 504 plan is all set for the upcomming school year. This time of year used to cause me great amounts of stress! I have now gone through 22 school year starts with my boys. I think I have it down to a science! LOL!

It took me a few years to find a system that worked best for our family. I prefer to go into the kids school(s) and do my own inservice. For some families they feel more comfortable having their Hemophilia Treatment Center help. I incourage you to find a system you and your family are comfortable with. It does help to make the school year a bit easier with the bleeding disorder part of it.

Enjoy the last month of summer break! Don't forget to prepare your childs school for the upcoming year....it is just one of the "school supplies" needed for a succesful year!

Lori

Camp

My sons have been at hemophilia camp since Sunday. I know they are having a great time! I just can't help wonder how they are. Have they had any bleeds while there? They are in good hands so I know I don't need to worry!

We will be picking them up tomorrow to head home for Brady's baseball tournaments.

Are any of you sending your kids to camp this year?

Tough times, stay strong

I'm sure all of you feel the way I do, but days go by and things are all good and then boom! Your child has a bleed that puts them down for a week and sometimes two or possibly three weeks. Those are the times I want to break down and cry. I usually don't because I have to stay strong and hold everything together. That's all right with me because I would do anything for my children. I just hurt to see them hurt. And then I know the doctors say that they will live a normal life, but the reality is life isn't totally normal. It's manageable and I thank God for that. It could be a lot worse. As I need encouraged sometimes all of us do. Stay strong and have someone to talk to. Be there for your children and love them a lot.
DeAnn

Happy 4th of July!

I hope everyone has a very safe, fun and ER free 4th of July weekend! If your traveling....remember your factor and supplies.

Enjoy!
Lori

JNC (Junior National Championship)

It is that time of year when the JNC's (Junior National Championship) take place! This past Saturday the first JNC of the year was held in Minnesota. For those of you who are not familiar with them it is a compition in golf and baseball for kids 7-18 years of age with a bleeding disorder.

I attended the JNC with my family. Cody played golf and Brady played baseball. It was a beautiful day! I am proud to say that my son Brady took third place in baseball and both of my sons were awarded the Good Sportsmanship award!

Please check our Hemophilia Moms website (www.hemophiliamoms.com) for more information on future JNC's. There will be 4 more this year!

I spoke too soon......

Well, after my initial "hello" blog, my son came to me complaining about one of his ankles thats been bothering him for awhile. About a month ago, in one of his little league baseball games, he twisted his ankle but finished the game and he said it just felt sore. He had his infusion the same day as the game so I didn't think much about it. About a week later during another game, he said it just started hurting. Didn't do anything inparticular to make it start hurting. He's been complaining on and off for about a month now. For the first time the ankle looks bruised but doesn't hurt constantly. He was at a baseball camp this week and it got progressivly more sore I guess from use. So....is this going to be a target joint? We are going to piggy back with and extra infusion this week to see if we can get it cleared up. But it is my first experience with a joint hurting him and I dont think it is a bleed. Or could it be? Guess the Mom in me wants an answer. Just thought I'd share my experience for the week. Suzanne

Hello

Hello Everyone! My name is Suzanne and I am the new Hemophilia Mom. I am very excited to connect with everyone. I wanted to take a minute to introduce myself. I am a Mother of 2 great children and as you guessed one is my 9 year old son with Hemophilia. He is Factor 8 severe and a spontaneous mutation. So, every day is a new day for us. We found out at birth thru his circumcision. He had his first port put in at 18 months and has prophylacticly treated since then.

We have encountered an inhibitor. We were very fortunate to have only been affected less than 6 months and burned it out. Our new venture this year was going from 3 days a week of prophy to 2 days. We have been doing this for about 4 months now and it is working well so far. We infuse on Wed. and Sat. It sure did help us out with the chaos of school day mornings to only infuse once during the week instead of M-W-F. I was very hesitant to try it, but it seems to be working for him at the moment. We are in full swing of baseball season and had one minor incident where he and the ball met and the ball won! He must have had enough hanging on in his system cause all he came away with was a big bruise.

I am looking forward to connecting with Moms and sharing our experiences! My Mother always told me "It takes a village to raise a child" and add hemophilia to the mix and it might take a city!

Boys and Baseball

My husband and I have worked very hard at making sure hemophilia is just a part of who our boys are and not what defines them! Baseball is a big part of our youngest sons life. He had a game last night against a team that is their biggest compitition. Winning this game would mean his team would clinch the first place seat.

Brady had had a minor bleed going on over the weekend so we were not sure how he would be able to perform. He plays third base and catcher. He started the game out at third base, which is where he likes it the best. During the 4th inning our catcher took a hard tag in the abdomen for the last out. He was struggling catching so next thing I know Brady is suited up and replaced our catcher so he could rest. That inning was Brady's inning to rest. Makes my heart warm knowing he doesn't "use" his hemophilia!

It was the bottom of the 9th. The score was 9-7...we were ahead. The other team was up to bat. Two outs. Bases loaded. Brady is back playing third base. Crack of the bat...ball headed to third base area....Brady scoops it up and makes an amazing throw to first base for the final out! Amazing!

I just had to share! I am so proud of my boys! Who they are in part is because of their hemophilia. Brady knew what it was like to just need a break and was willing to forgo his resting time to allow his teammate to rest.

Lori

The Elbow

Last Friday four little words were spoken to me that made my heart stop...."Mom, my elbow hurts."

As many of you know my son, Cody, had elbow surgery the begining of March. His right elbow had been a target joint for him when he was younger. It had been giving him trouble so the doctors decided it was time to fix it surgicaly. The surgery went very well and Cody recovered very well.

As you have probaly guessed by now Cody had his first bleed in that elbow since his surgery. Even after all these years of dealing with hemophilia (26 years to be exact) it was hard for us to determine if this was a bleed or something realted to the surgery. We infused him every 12 hours for a few days and the elbow seems to be better.

Have any of you had to deal with something like this?

Lori

From all us Moms to All you Dads

Happy Fathers Day .....................
I hope you really enjoy your day today
Being a Dad is so special and important
My hats are off to all of you
Happy Fathers Day

Expired Factor Products

One parent asked me what can they do with their expired factor products that they don't want to throw away. Also how far back of it, being expired, for it still be safe for use or be donated. I told them that there are organizations that takes them. I also advised them to talk to their Hemophilia Treatment Center or talk to their doctor for more information. I just wanted to bring up the topic for possible suggestions or discussion.

Spanish blogging First Sunday of everymonth

Hi everyone, our very own bi-lingual mom is going to blog the first Sunday of everymonth,
Let us know if you enjoy the spanish blog mark your calendars