Holiday Travel

We are all busy running around making sure we are prepared for the Christmas season. For some of us that means traveling to others homes. When making your list of items to pack don't forget your factor needs! Make sure you back a little survival kit for bleeding. Here are a few ideas of items to include: bandaids, gauze, instant ice packs, coban, factor, factor supplies and whatever items make dealing with a bleeding issue easier in your family.

May you all have a safe and bleed free holiday!
Lori

Elbows and Surgery

We have a mom who is looking for families that have any experience with synovitis surgery in the elbow. Please share your experiences.

My son had elbow surgery in March do to arthritis and to remove a piece of matter in the joint. This elbow had been a target joint for him and became painful for him. He would experience times where the elbow would "lock up". I know he is happy that he had the surgery. The pain after surgery was so much less than the pain he had been dealing with every day. We were very pleased with his recovery.

I encourage you to talk to your HTC. They are a wonderful resource for you!

Lori

Proud Momma Moment!

Wow, Myrtle Beach, SC was beautiful on Friday Dec. 10th which was the opening of our SC Hemophilia Chapters annual Christmas Education Symposium. We had some fabulous speakers and break out sessions. My son looks forward to this event every year. He gets to spend a weekend with other children who have the same disorder and it gives him a chance to form life time relationships with those children. At this event, we were offered a chance to attend a new summer camp here in SC this year. The closest camp to us with a bleeding disorders week is 4 hours away. I think all the kids are getting very excited to have the opportunity to spend another week together. And I think my son finally got what I have been telling him since he was born......As I was hovering over him and his activities at the pool he told me "Mom, this is the way the Good Lord made me and I have to learn to deal with it. Let me be with my buddies and have some fun!" I had to back off....let go (which about killed me) and he had the time of his life, knew his limits and got to feel normal. It was a proud Momma moment.
Happy Holidays to Everyone! God bless. Suzanne

Dayton Ohio GIG

It was a pleasure to meet some wonderful parents of children with blood disorders. We had to come out in the cold but it was worth it. We had dinner with a couple of speakers and then off to the Dayton Dragons Basketball game. We were all able to set together at the game and have a good time. It's always nice to get together with others who understand what you're going through. I look forward to seeing you again.
DeAnn

Snow Boarding

My son Alex is getting ready to go snowboarding next weekend with the youth leadership group from our Oregon foundation on Mt Hood, He will infuse prior to the event and while he is there
he will be save and have a great time. this is his 3rd year and it was hard to let him go the first year but now I know he looks forward to it and has a great time with his buddies. Letting go is hard, remember they are kids first

Have fun in the snow

Community Involement

This weekend we went to OMSI an event put on by our local Hemophilia Foundation. It is always great to go to these, visit with others and let the kids visit compare notes per say
I always see kids that have more problems than our family and then others that have less, it just shows that we are all different and we need to educate ourselves as well as others to our needs.

I hope your problems are few and your hopes are high this cold winter day

New Website Look

I am so excited about the "make over" of our Hemophilia Moms website! We listened to all of your feedback and hopefully have developed a site that is easy for all to navigate! Stop by and visit www.hemophiliamoms.com then come on back and blog to us your thoughts!

Hope everyone is doing well and enjoying the magic of the season!
Lori

What a Great Year!!!

I would like to follow behind Rhonda and welcome everyone to the new website. It is fabulous!!. Play around with it...check it out......ask me a question!! What a way to close out this year with something new as we look forward to a fresh 2011 with new programs and events posted to educate, empower and connect us Moms. I hope you will check in with us and come to some events.

Here in South Carolina we too are also closing out the year with a great event, our Annual Chapter Christmas Symposium weekend held in Myrtle Beach, SC. We look forward to it every year. One point I would like to share with you Mom's is that attending chapter meetings I have found is very important. It is a great forum for education, fellowhip, sharing and just plain fun. Last year it provided me with "just what the doctor ordered"!! I was struggling with some issues and had 2 other Mothers in a very similar stage of life with our kids and one Mom who had already been there to offer some great words of wisdom. I left that meeting a with a new outlook and a much better attitude on tackling some of the issues we as Mom's with children who have blood disorders face every day. It also gives Dad's a chance to mingle and do the same sort of thing. Siblings meet other siblings. Most importantly, my son has met some great kids who share the same disorder and it has empowered him both emotionally and physically.

I hope you enjoy the new website and come to some of the events that are close to you!

Happy Holidays!
Suzanne

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

Adulthood and Going to College

These past few months, I've been contemplating about my son being an adult now and him going off to college. I guess it's every parent's feelings. The fear of letting go is so much already, yet the intensity is even tripling due to the fact that he has severe hemophilia A. I have so much questions... Can he manage, now that he's separating and living on his own? Will he be alright? Will he infuse in time and as directed or not? What if he gets hurt and we're far away? Will he be OK with his future college peers? Can he survive? I wonder...

As parents, how do you cope? Thoughts?

504 plan or IEP * reminder*

The end of the school year is here, so those of you that have 504 plans or/and IEP need to review them for next year, those of you that do not have these plans in place and are thinking about them this is a good time to start getting them worked out for the next school year.

Junior National Championship St Paul Minnesota

June 26th
Minneapolis/st Paul Minnesota
Hosted by Hemophilia Foundation of Minnesota/Dakotas
Children with bleeding disorders and their families are invited to participate in regional golf and baseball competitions
to sign up visit WWW.giginc.com

Lori our Hemophilia Mom will be speaking at this event please come out and the kids can play and you moms can visit

We hope to see you all there

Rhonda

Welcome Suzanne

We have a new hemophilia Mom her name is Suzanne, all you bloggers welcome her to our group
she has a son with hemophilia

Hi everyone

Summer is all most here

Your Child Has Hemophlia!

I will never forget the day those words were spoken to me! All three times!

I have three sons with severe hemophilia A. With no family history this was quite A shock to us! Our HTC provided us with a wealth of information. We also found wonderful resources at our local hemophilia chapter as well as the National Hemophilia Foundation. One thing that helped me was being able to talk to other moms who had kids with hemophilia. However 26 years ago that was a bit of a challenge! I am thrilled to be part of Hemophilia Moms so I can share my experiences with all of you!

I was so frustrated all those years ago when no one could answer a question that I felt was pretty straight forwar. " How big is a bruise before it is a bleed?" I always got the same answer..."you will know!" Now how was I going to know? I had never seen a "bleed"! I barely knew what hemophilia was! However, when my son had his first bleed....I knew it! When he had his first spontanious bleed....I knew! As mothers we need to trust ourselves. Take advatage of all the resources that are available! Twenty six years ago I would have loved to be able to talk to other moms in my shoes with the click of a mouse!

How did you feel when your son was diagnoised? How did you know your child had a bleed?

Make it a great day!
Lori

Happy 16

My son turned 16 this week, I am so proud of him. He has severe hemophilia and we have worked so hard at not allowing the hemophilia to run our lives. He has had a few knocks through the years, broken ankle and arm , a hit to the head, a bleed that lasted 6 weeks behind the knee, hemorrhaging Adonises, an elbow here and there, not to forget the mussel bleeds now and then.

He is walking with out a limp, 95%+ range of motion on all joints, a mended arm and no target joints.

He is getting his drivers license this week, spending weekends with friends even out of state and once in a snow cave. He rides dirt bikes, quads, snowmobiles and plays a full menue of sports. He has taken full controll of his inconvience and is powering on to be the best he can be.

What more can you ask for a well rounded kid, ready to take on the world

You new moms out there remember hemophilia is a small inconvience not a handicap
enjoy your children

Happy Birthday to my Alex

Seeking a freind to visit with

I have a family that has an older son in his 30th that has sever hemophilia. He also has some mental challenges and is unable to be on his own and take care of his hemophilia. I would like to find someone that understands these ups and downs and hook you up so you can visit, on line or telephone . If you are interested in making contact with his family please contact me at hemophilamoms@aol.com
thanks, Rhonda

Oh The Elbow

My 15 year old son with severe hemophilia learned this week he needs to have elbow surgery. His elbow was a target joint many years ago. There has been quiet a bit of stress trying to plan it.

Last night Cody was filled with stress trying to figure out a time for the surgery that would least affect his busy life of activities. I sat down with him to prioritize his list. I could see he was becoming more and more frustrated. As I hugged him I said isn't it wonderful we are having such a problem finding time in your activity schedule! He thought for sure I had lost my mind! I started telling him that kids his age 30 or 40 years ago would not have a problem with this at all because they couldn't be in all the activities he was in.

Sometimes it is hard to look on the bright side when we are frustrated. It is important to sit back and take a breath. It was amazing how much of Cody's frustration was lifted by that one sentence I spoke to him.

I would love to hear how some of you have handled situations like this!

Make it a great day!
Lori

Thank you!

Thank you to you all for your patients while we worked through our SPAM issues. We think we have out smarted the spamer....is that a word? LOL

We appreciate your comments!