Hemophilia Mom's Forum

Hemophilia of Iowa

2011-10-08T09:26:00.001-04:00

I am in West Des Moines today for Iowa's Education Weekend. I enjoy seeing so many familiar faces and meeting new families. Stop by the CSL booth and say "Hi" and get your Mom2Mom pin!

Lori

Back to School - Ugh or Yippee!

2011-08-19T18:42:00.002-04:00

Well, it is that time of year again when most of us send our precious babies back to school...or should I say back to the great unknown! I have chatted with a few friends recently and they are so happy to "get them out of the house". Many parents find summers very hectic and fun but also frustrating sometimes. With the kids home they simply do not get a lot of things done that maybe they were planning to do. Sometimes the unscheduled chaos can send even the most calm and collected mom into "orbit." If you have more than one child you can probably identify with that. They all want to do something different and they all want you to do it with them! Either that or they are bickering with each other, picking on each other, whining, or making a complete mess of your freshly cleaned house. Ahhh the joys of motherhood!

Are you looking forward to school starting again? Just waiting for those free mornings to sip coffee on the patio, catch up with friends, read that book you have been meaning to, or take a leisurely shopping trip? Or are you in the other camp of dread and worry because school has started? Do you jump every time the phone rings thinking it is the school nurse calling to summon you because your child is bleeding? Does fear grip you until your child arrives home and you know everything is alright? Do you worry that your child will not understand what is being taught, get bad grades, be rejected by friends, be teased, harassed, or worst of all injured by some bully? These are very real things that we face as moms. Even moms of children without bleeding disorders have many worries. But we have the added stress of the "what if they are bleeding", "what if I can't get there right away", "who will help my child", and the list of "what ifs" goes on and on.

Many parents of children with bleeding disorders have a "school plan" in place to help aleviate some of these worries. The principal, the teacher, classroom aids, the school nurse (if there is one), and the playground aids need to be made aware of your child's situation. Emergency numbers need to be provided so they can contact you, your doctor, or your Hemotologist should the need arise. Your Hemotologist would be a great resource for you to employ in putting together a plan that is right for you and for your child's school. You definately want the plan to be simple and something that the school will actually be able to carry out at the moment the need arises.

Maybe you have a plan or a protocol in place that is working well for you. If you don't mind sharing, I would love to hear about it! There may be others that can benefit from your well thought out school plan. Or, maybe you have some great ideas or thoughts to share about how you deal with the stress of sending your child back to school...I know I can always use advise on how to lower my stress level! Thanks for sharing!

Step Out for Bleeding Disorders

2011-08-06T15:06:00.002-04:00

Today was the first annual walk for the Hemophilia Foundation of Minnesota and Dakotas. There was a great turn out! It was so nice to see so many familiar faces and meet new families! A wonderful time was had by all as money was being raised for a great cause!

Have any of you attended a walk?
Lori

First Gene Therapy in Hemophilia Successful in a Mouse

2011-06-29T09:52:00.001-04:00

This is the best news I've ever heard! Thank you, Lord. Just wanted to share.

http://www.pcworld.com/article/231326/living_mouse_receives_the_first_genome_therapy_cures_hemophilia.html

Wisconsin Bleeding Disorders Conference

2011-06-11T08:45:00.001-04:00

Good Morning!

I am in Wisconsin for their annual meeting at the Kalahari resort. Looking forward to seeing many familiar faces as well as meeting new!

Make it a great day!
Lori

Baseball ....Hotdogs.....Summer

2011-05-23T15:07:00.003-04:00

Nothing kicks off summer better than baseball, hotdogs and popcorn at the ball park. Looking forward to a River Dogs game June 23rd in Charleston, South Carolina! If your close or willing to drive we will have a group going with great Mom 2 Mom discussions and watching baseball with our families.

Hope to see some of you there or meet some new Moms to welcome to the Hemophilia family!

Hope to see you then!
Suzanne

2011-05-10T07:08:00.002-04:00

The Illinois Family Education Weekend is this weekend! Wo is planning on attending? I will be there! I am looking forward to seeing many familiar faces as well as making new friends. See you Saturday!

Lori

Happy Mothers Day

2011-05-07T16:50:00.001-04:00

Good Morning, We are getting ready for the tea in the Greater Portland, Oregon Hope to see everyone there

April - Volunteer Month

2011-04-28T14:56:00.002-04:00

This is the month were we recognize all you volunteer out there, for all your hard work

Thanks everyone for taking a moment to share your self with others and making thier lives better

Rhonda

Up Coming Events - Mom to Moms Portland, Oregon

2011-04-28T14:40:00.002-04:00

Hemophilia Moms- Special Mom2Mom event Saturday May 7, 2011 2:00 pm
Vancouver, Wa (greater Portland, Oregon)
The Grant House
In honor of you this mother's day enjoy this unique chance to take time for yourself, relax, enjoy meeting other parents, and relax.

Hope all you Moms, Grandmothers, and Wife's can come join up on this special day

I will be there talking about challenges and achievements as a parent of a Hemophilia Child

Appleton, Wisconsin Moms

2011-03-25T11:37:00.003-04:00

I will be traveling to Appleton Wisconsin on Tuesday March 29 to speak at a Moms dinner. Looking forward to seeing all the moms!

Lori

Spring Break!

2011-03-22T14:52:00.002-04:00

My son's home for the week, for spring break. Thank God!

Though Vohn's 18 and self-infusing, still, can't stop worrying about him. What we go through as parents daily. Sigh... Sometimes, I'm happy for his independence, yet fear it the same time. I guess getting over the fear is never an option for all of us, or is it just me? He's home, he's safe. I guess for me, that's all that matters.

Enjoy everyone, springs here.

To Port Again or Not

2011-03-21T10:03:00.002-04:00

We have had such a hard time finding veins in my 16 year old. He had his port removed about 5 years ago. However, his veins lately have not been cooperating at all! Of course this has become very stressful! My son has now decided he would like to have another port placed. We stand behind whatever decission he makes.

I am wondering if there are other families out there that have made the decission to place another port years after having one removed.

I hope you all are enjoying the begining of spring!
Lori

IV Iron

2011-03-16T10:54:00.002-04:00

My 16 year old has been horribly anemic the majority of his life. Taking oral iron makes him so sick to his stomach. We have now gotten to the point where his hemoglobin is 9.1 and his red cells are sooo very small. His doctor felt that at this point the only option would be to start him on IV iron. This is done over 10 infusions given 3 times a week. He has had 4 infusions now and is so sick! He is taking Zofran several times a day. This last infusion they even tried giving him the Zofran by IV before hand. That did not help. It is very hard to watch your child suffer no matter what the age is. In the end I know it is what is best for him. I feel so bad for him as he not only feels so crummy but is having to miss a lot of school.

I am wondering if anyone has had any experience with IV iron. Do you have any ideas?

Hope you all are enjoying the promise of spring!
Lori

Port vs Veins

2011-02-22T14:46:00.002-05:00

Well, the big day in my 10 year old sons life has finally arrived! He has his surgery scheduled to have his port removed. For 10 years I have been telling him that when he was old enough and mature enough to learn to self infuse using his veins, we would have the port taken out. He has asked to go to different summer camps, to his cousins house out of state ALONE with out Mom, weekend trips with friends and family and Mom has to go because Mom knows how to infuse or he has to pass on the trip because he can't go by himself.

About a month ago he contracted a bacterial infection in his port which went into the bloodstream. He was a very sick little boy. Thru 4 days in the hospital, IV antibiotics for 2 weeks, no school, very limited and restricted physical activity and his doctors saying it was time to get the port OUT, he learned to self infuse. Motivation is a wonderful thing.....he got the vein the first try and we are on our 6th successful self infusion. Mom supervises now. It is very liberating for him.

My question to you Mom's, how did you deal with the surgery of getting the port taken out. I am nervous about that. I am nervous that my security blanket (the port) is being removed. Easy access in an emergency. I have met some great Mom's on the west coast and they have never used a port to access there child as they have always used the veins. I feel selfish but worry about the longevity of his veins for the rest of his life.

I would love for any insight you could give!
Suzanne

An Open Letter To A New Hemom... Tatyana

2011-02-21T22:20:00.003-05:00

Hi Tatyana,

No need to thank us. We thank you for finding us and we are so grateful to have made a difference in your life.

I guess, I'll start by saying, we all had the same fears when we first came about the news that our precious children are affected by the condition... Hemophilia.

For years, I've tried to find answers too. Tried so hard to get understanding for it. It took me a while, nevertheless, worth every effort. Through the help of my son's medical team, treatment centers, other Hemoms, volunteers and the entire hemophilia community, our family was able to survive the nightmare. I always thank God for that! I always thank Him for guiding us in our way through our darkest moments.

My son now is in college. He was diagnosed with severe Hemophilia A at age seven. Currently a 3x National champion in golf, living a normal life through prophylaxis treatment of his meds, Helixate FS. Never better... We are so proud of him!!!

We Hemoms are here for you. We are here for each other. Feel free to ask questions and each one will be able to help guide you through your journey, as they have for mine. We have a website that you can always visit as well with our stories, at www.hemophiliamoms.com. I'm sure you'll find the site not just informative, but also full of resources. I guarantee you that it will give you, not only peace of mind and assurance, but also the greatest gift you can possibly imagine... Hope.

Take care,
Jenny

Helitrax

2011-02-09T18:22:00.002-05:00

Finally, our much awaited mobile Helitrax (for users of Helixate FS) application is now available for my son and our family to use!!! Yayyyy!!!

I've been requesting this for the longest time, but since it wasn't available through my son's old treatment center, he never got one. I'm so glad to have it now available for us. His new doctor and treatment center is using it too. It worked out perfectly, I'm so excited!

Finished my training today too using the device and application. It's highly recommended if you don't have it. They made it so user-friendly. It is a very useful tool for the hemophilia community. And since my son now is in college, this is one way for us to keep track of his infusions without getting on his case all the time. You know how some teenagers are, they just doesn't wanna be asked.

I will definitely enjoy it with my son this weekend, by practicing on how to use it.

Good ways to find veins

2011-01-29T19:00:00.002-05:00

I was wanting to find out as parents at home some way to find good veins to infuse in. I've tried many, but someone may have a way that may work better for me. I've tried a heating pad, water and cream. So far it's not helping alot.
Thanks,
DeAnn

Happy New Year!

2011-01-05T13:58:00.002-05:00

I hope this finds you all healthy and bleed free!

The beginning of a new year can be stressful time when it comes to insurance. I encourage you to place a call to your insurance company and check to see if anything with your benifits has changed. That way hopefully you will avoid any surprises. Your Hemophilia Treatment Center is a great resource for you as well.

Enjoy 2011!
Lori

Holiday Travel

2010-12-22T08:07:00.002-05:00

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

2010-12-14T08:51:00.002-05:00

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!

2010-12-13T10:08:00.005-05:00

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

2010-12-12T20:33:00.003-05:00

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

2010-12-10T13:51:00.002-05:00

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

2010-12-07T18:38:00.002-05:00

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

2010-12-07T08:34:00.002-05:00

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!!!

2010-12-01T11:01:00.002-05:00

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

2010-11-24T10:39:00.002-05:00

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

2010-11-18T20:08:00.003-05:00

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

2010-11-18T13:02:00.001-05:00

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

2010-11-17T03:05:00.003-05:00

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

2010-11-12T20:27:00.001-05:00

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!

2010-08-11T09:01:00.003-04:00

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

2010-08-07T12:54:00.002-04:00

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

2010-08-03T00:03:00.003-04:00

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?

2010-07-31T10:48:00.002-04:00

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

2010-07-14T15:29:00.002-04:00

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

2010-07-06T22:31:00.003-04:00

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!

2010-07-02T09:33:00.001-04:00

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)

2010-06-29T23:14:00.002-04:00

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......

2010-06-26T12:15:00.003-04:00

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

2010-06-22T20:09:00.002-04:00

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

2010-06-22T11:27:00.002-04:00

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

2010-06-21T09:58:00.002-04:00

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

2010-06-20T12:00:00.004-04:00

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

2010-06-16T00:47:00.002-04:00

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

2010-06-14T22:21:00.001-04:00

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

2010-06-10T17:12:00.002-04:00

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*

2010-06-10T11:39:00.001-04:00

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

2010-06-08T12:02:00.002-04:00

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

2010-06-08T12:01:00.002-04:00

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

2010-06-05T19:21:00.002-04:00

Summer is all most here

Your Child Has Hemophlia!

2010-02-12T10:49:00.002-05:00

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

2010-01-29T12:20:00.002-05:00

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

2010-01-29T12:15:00.003-05:00

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

2010-01-15T11:15:00.002-05:00

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!

2010-01-15T11:14:00.002-05:00

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!

2009-12-25T20:17:00.001-05:00

Merry Christmas to everyone

Spam - on comments

2009-11-27T11:38:00.001-05:00

I am trying to get this blocked, sorry about the inconvience of the spam. Thanks for participating on our blog site. I hope that everyone enjoyes each other and shares for everyone to have a better life

happy holidays

Happy Thanksgiving

2009-11-27T11:37:00.001-05:00

I hope everyone enjoyed your families during this feastive day
Rhonda

Dreams and Set Backs

2009-11-23T08:12:00.002-05:00

My two teenage sons bowl on their High School bowling team. On Sunday we were traveling about an hour and a half away for a big State Tournament. Needless to say they were both very excited! When Cody my 15 year old woke up Sunday morning he was not able to straighten his right arm. He has had some issues with this elbow more than likely from past bleeds. He was certain it was not a bleed but he did give himself factor. I'm sure you can imagine how difficult it is to bowl when you can not straighten your arm. Cody put forth his best effort and really bowled quiet well. His team was supportive of him and his efforts! I watch for just about 5 hours as my son struggled to bowl. I was filled with mixed emotions! Part of me was so proud of him that he continued with his passion yet another part of me wanted to run down and get him and take him home.

We all have times when we have to have faith in our kids and let them make the best choices for themselves. It has always been important to me to make sure my kids understand their hemophilia and their limitations. To understand when to take a break and when to push forward. Sometimes that line is not so clear.

I will leave you with a line I always say to my kids when they leave the house. It applies to so much more than their hemophilia!

Make good choices!

Mysteries

2009-11-17T08:17:00.002-05:00

Last week we discovered that my 15 year old had a very low hemoglobin and the size of his red blood cells was very small as well. Our hemotologist said that since he has not had any prolonged bleeds that we are aware of we need to investigate. He has had a CT scan of his abdomen which was normal. Today we are seeing a GI doctor to dig a bit deeper. The thought is that he has some slow bleeding .... maybe in his GI....that is just not enough to give any signs but enough that over time has lowered his hemoglobin.

The "battle of the hemoglobin" is one I'm sure we have all dealt with. If you feel comfortable, please share your stories. Maybe something someone else has been through will give us ideas of what to look for in my son.

Have a fantastic day!

Lori

Annual NHF Meeting Sanfranciso, Ca October 2009

2009-10-18T20:13:00.002-04:00

Hi everyone,

I am so excited that this month is NHF, we meet so many people, make freinds for life and learn about hemophilia. I hope to see some of you there, have a safe trip

National Hemophilia Foundation Annual Meeting

2009-10-11T13:20:00.002-04:00

San Francisco California October 2009
For those of you that are attending NFH make sure you stop by and visit the CSL Booth 100
See all of you in San Francisco
Rhonda

good morning golfers and baseball players

2009-10-11T13:19:00.002-04:00

it is beautifull here in Roseville California today at the JNC
Good Luck everyone one

JNC SACRAMENTO CALIFORNIA

2009-10-10T13:36:00.002-04:00

Welcome everyone that is attending the JNC in Sacramento, Ca on Sunday
It is going to be a gorgeous day with lots of fun, friends and excitement

broken Ankle in 4 places

2009-09-22T09:51:00.002-04:00

Good Morning everyone, today is a big day at our house, we are going to the doctor and get the official word that my son can walk on his ankle again He broke it July 22nd, had surgery and spend the summer in a boot, wheelchair and crutches. I am just so thankful that we are able to suffer these minor problems in life as they are Minor. With modern technology one being factor he only spend one day in the hospital and they feel that there will not be any permanent damage
thanks for all your prayers

Nose bleeds

2009-08-23T20:41:00.002-04:00

Hello, I'm just curious to see how many other moms out there deal with alot of nose bleeds with their children that have hemophilia. My children have been in school 5 weeks already because they're in year round school. The first week of school I was called three times for a nose bleed. My son has had them since he was a baby. It seems they don't bleed real heavy all the time. Which is good, but it seems his nose is like a faucet. It's like you turn it on and then off. It bleeds for no reason. You all know that we go through so many things with our children, so this isn't really a big deal, but I feel bad for him in school when this happens. I'ts always good to hear what other mothers experience. Have a blessed day, because everyday is a blessing.

Hemophilia of Iowa

2009-08-20T22:14:00.002-04:00

Tomorrow morning I will be headed to Des Moines, Iowa for their annual meeting. I am looking forward to seeing old friends and meeting new ones! If you are attending this meeting, please stop by the CSL Behring booth and say HI!

Annual meetings are such a great way to interact with other families that deal with the same thing as you....bleeding disorders. There is always a wealth of information there! I do hope you all take advatage of your local annual meeting. Don't for get the NHF annual meeting in San Fransico the end of October!

Safe travels to all!
Lori

Good Morning Rainy Salt Lake

2009-08-15T11:13:00.002-04:00

Good Morning everyone, I am in Salt Lake today at the CSL Behring Junior National Championship, I am excited to meet all these Moms and families
Bring your rain coat and I will see you there

Salt Lake JNC

2009-08-06T18:13:00.002-04:00

I will be at the Salt lake JNC Aug 15th
hope to see you there

Kids will be Kids

2009-07-28T10:54:00.002-04:00

Good Morning everyone,
My son wanted to take a last dip in the river Wednesday Night before dinner and packing for Vacation. We live close to the river, he jumped in his normal spot that him and his cousins call thier own and something happened, he hit a big rock. Some one had pushed a big rock into the jumping spot and he hit it with his left foot. Breaking it in 4 places at the ankle, Well guess what that ment, a trip to the ER exrays and 5 hours of wait time. they said we could still go on Vacation, but we were going to fly in 4 hours for 6 hours plus to a Ranch of all fun outdoor things and he was in a boot, crutches and wheelchair not mention the Meds involved. the trip has been postponed and we are having surgery next week, in the mean time we are infusing twice a day and trying to keep a 15 year old some what at bay, he is still very active, he went to the National Motor Cross Races, went to the river, went shopping and out to dinner. I have to admire my Son he is taking this small set back with a great attitude, I will keep you posted on the out come

National Hemophilia Foundation Annual Meeting

2009-07-16T10:17:00.002-04:00

We just signed up for NHF's annual meeting in October
It will be held in San Fransciso, Ca
If you are planning to go visit the website of NHF and there is information and registration info available

I hope to see you there

Camp

2009-07-10T11:26:00.002-04:00

How many of you are sending your child to a bleeding disorder camp? We are packing up today to head to the northern woods of Minnesota. My boys will be attending hemophilia camp at Courage North in a week. We like to go up early with our RV and spend some time with the boys before hand.

I would love to hear from those of who have kids going to camp, already been to camp, or deciding about camp!

Hope you all are enjoying the summer!
Lori

We are Family

2009-07-05T17:48:00.002-04:00

Hello to you all. It seems we all have busy schedules and all have something in common. Everyday we have a challenge, but we survive. We all need eachother and having this blog site is the perfect thing. This isn't for us to write stories, but for us to communicate and just ask questions. It's a good feeling to talk to someone that understands what you're going through. Let's all use this website to do this. I'm sure there's days we can use some encouragement. Remember, everyday is a new day and we will survive, we are family.
Hope to hear from you,
DeAnn

School is out for most

2009-06-21T12:23:00.002-04:00

Yea School is out for the summer
This is the time of year your kids go with friends and family with out you, make sure they have thier medical alert current and take thier factor just in case

also, this is the time of year that you work out with the school all the details for Individual learning programs and or federal forms

enjoy

Happy Memorial Day!

2009-05-25T15:02:00.003-04:00

I hope everyone is enjoying this day! I know many are participating in outdoor activities....games, cookouts, boating, camping...the list goes on. Remember to have fun....let your kids be kids....make sure they have been infused so all the fun does not come to a hault by a bleed! However, even with good planning bleeds do happen. Its ok! That is just one way we are all connected!

Here is to a hospital free day!

Hemophilia Factor 10 deficiant

2009-05-21T12:53:00.002-04:00

I meet a family that has factor 10 deficiant Hemophilia bleeding disorder, does anyone have some advise for these young ladies both Teenagers, they are having quite the problems, so if there is someone out there that can help them please give them some words of encouragement and or share a story if you have Factor 10

have a great day

Hemophilia and Broken Bones

2009-05-15T00:49:00.002-04:00

Well it finally happened...my soon to be 9 year old son with severe hemophilia broke a bone! Yikes!

While just playing around with some friends my son was going to catch a ball, tripped and fell, then a friend tripped over him and landed on his hand. I was peacefully watching two of my daughters play a T-Ball game when he reported to me that he hurt his thumb. It was pretty swollen and when we moved it he had the classic symptoms of a joint bleed. Upon arriving home we immediately infused him and iced the thumb. Since it was late I sent him to bed figuring I would call the HTC in the morning for a dosing schedule.

In the morning my son woke up crying and in pain...the thumb looking even worse. I was getting a really bad feeling about the whole thing so called the Pediatricians office to try to fit him in for an x-ray. I am sooooo thankful for a wonderful doctor. When I told them what had happened they said "How soon can you get here?" I packed up the kids and off we went. The doctor took one look at his thumb and sent us directly to an orthopedist. We were able to get an appointment within one hour. So off we were again to another office. After the x-rays were taken and read...the bad news was broken to us. "Yes, it is fractured," stated the doctor, "No baseball for you for about 4 to 6 weeks." My son burst into tears, he loves playing on his little league team. But the biggest disappointment was that only 4 days from then was his 9th birthday and he had been so excited all year because there was a game scheduled on his birthday! He had talked about it for two months. Now he could not play. Instead he was put in a splint and told to take it easy.

Upon arriving home I called the HTC for a dosing schedule. Since my son has a low half life we had to treat twice a day for a few days, then every day for several days after that. He was not really happy about it, but it had to be done. What a frustrating situation for a young active boy.

But not all of this is such a bad thing. What I do want to share with you is that a wonderful character building opportunity was given to my son. Yes, I was disappointed for him, and yes I missed seeing him play too. But the remarkable attitude he showed during this time brought me to tears. He wanted to go to his game that very evening. When we arrived home he got on his ball uniform and asked if he could sit with the team. I was so proud of him for having such a team spirit. But what I saw during the game was even more amazing. He did not sit on the bench feeling sorry for himself...instead he was jumping up and down cheering on his team and encouraging them every step of the way. I was encouraged to think that even when things don't turn out as we plan, there is usually a gold nugget just waiting to be found. So when things don't seem so good...just look around....look hard....you may just find a gold nugget.

Many Blessings!

National Hemophilia Foundation annual conference

2009-05-10T13:21:00.002-04:00

October 29, 30 and 31st in San Francisco, Ca
visit NHF.org for scholarship information and registration

This is a great source of information and interaction with others with hemophilia

ohh and a whole lot of fun

hope to see you there

Happy Mothers Day

2009-05-10T13:20:00.000-04:00

Mom to parents event Portand, Oregon

2009-05-06T19:46:00.002-04:00

Saturday May 9th
Portland, Oregon
dinner on the willamette

everyone is welcome
RSPV 888-508-6978

Summer, time for bruises

2009-04-24T12:16:00.001-04:00

I hope all of you are doing well. I'm sure like me you're excited the nice weather is here. My two boys stay bruised up during the summer and probably tend to have a few more bleeds. Lets all try to keep them infused on schedule and have a great summer.
DeAnn

Utica, Illinois

2009-04-22T23:48:00.002-04:00

I will be traveling to Utica, Illinois on Friday to attend their Education Weekend. I am hoping to see many of you from that area! If you are attending this meeting be sure to stop and say Hi!

Lori

Ready for Baseball?

2009-04-15T23:16:00.002-04:00

The nice weather has finnaly come to Minnesota! With it also comes baseball season for my younger two boys. Somedays I feel my kids have forgotten they have hemophilia! My kids know that they must do factor before being able to play baseball. Every year we seem to have to have the same talk about making sure this has been taken care of. They do understand why they need it......it is just teenagers really hate another "chore"!

So when Monday afternoon came around it was time to head off to the field. Baseball uniform...check, cleats.....check, bat, glove, batting helmet.....check, catchers gear....check, water....check, factor......oh, I forgot to do it....I'll just do it when we get home. To which I said, "No! You will do it before ball or you will not be going." Like I said this is not something new to them. So why is it every year we go through this same process?

I'd love to hear from all of you! Let me know how your spring is going. Are there any topics you would like to talk about?

Enjoy the warm weather!
Lori

Spring is Sprung

2009-03-25T14:14:00.002-04:00

I do not know about you but the nice weather brings more outside activity, brings more bumps and bruises so plan ahead be prepared and do not forget to take your factor with you when you travel

Learning to drive--growing up

2009-02-22T14:10:00.003-05:00

My son just turned 15 years old. He just enrolled in driver's ed and has her learners permit.
Did not think about it much until he drove off with the driver's ed teacher. What if he crashes during his lesson, do we notify the instructor of his hemophilia. He wears his medial alert bracelet. So I came to the conclusion. I have to let him grow up and hope that if something happens during drivers ed, they read his bracelet. It is hard to be the mom sometimes.
To all you Moms have a good day.

Tu Familia y La Hemofilia

2009-01-23T20:17:00.006-05:00

Bienvenidos al primer “blog” de Hemophilia Moms en español. Mi esposo y yo tenemos una hija de 17 años y nuestro hijo recientemente cumplió 13 años de edad y tiene deficiencia de <1% en factor VIII - Hemofilia A severa.

La hemofilia nos llegó de manera inesperada ya que no existe un historial médico en nuestra familia. Eramos una familia estable y feliz con expectativas normales para nuestros hijos en los fundamentos de la vida como la educación, la interacción social y actividades extracurriculares como los deportes. Cuando nuestro hijo nació y fue diagnosticado con hemofilia, fuimos afectados tanto emocionalmente como económicamente al yo dejar de trabajar fuera de mi casa para cuidar mi bebé.

Como madre, pasé por varias etapas emocionales comenzando con la negación de que mi bebé pudiera tener esta condición. Luego me sentí culpable de haberle trasmitido la hemofilia a mi hijo porque pensé que yo era portadora. Resulta que me hicieron unas pruebas las cuales determinaron que no soy portadora y la hemofilia nos llegó como una mutación espontánea. Finalmente, llegó la aceptación la cual nos abrió un mundo de oportunidades.

Los primeros años con la hemofilia fueron retantes y de aprender cómo manejar la condición. La educación sobre la condición fue la herramienta principal para superar los contratiempos y tomar control sobre nuestras vidas al no permitir que la hemofilia nos controlara la vida familiar.

Mi hijo es un joven como cualquier otro – sociable y activo. Sorprendentemente, la hemofilia nos ha fortalecido como familia y ha contribuido a convertirnos en mejores seres humanos. Hemos sido motivados a ser proactivos al participar en programas que promueven una mejor calidad de vida para familias afectadas por la hemofilia.

Me encantaría leer sus comentarios y compartir nuestras experiencias. Hasta pronto …

Boys and Their Toys

2009-01-01T16:15:00.003-05:00

I was sitting this afternoon enjoying the fact that we had successfully made it through not only Christmas but New Years without a trip to the ER. Those thoughts were interupted by the sound of my 12 year olds excited voice anouncing the fact that his oldest brother just pulled in the driveway with a new snowmobile in tow! Now don't get me wrong......I am all for my three sons with severe hemophilia to be boys first! However how much grey hair do they think their mother needs! I love to go and see my hairstylist but after finding out she and her husband were building a new house I began to wonder how much of that house my grey hair was financing!

It is hard sometimes to let your kids go and be boys. Trust me I know! After the family went outside and did the proper oohhhs and aahhhs he says he is going out snowmobiling with his friends. Now mind you he is 24 years old stands about 6 foot ~ 250 pounds and I find myself saying....."Did you do factor? Do you have factor with you? Are you sure this is a good idea?" With a smile and a laugh and a side hug to me he says...."Yes Mom! I'll be fine! Don't worry so much! I'll try to keep it under 100mph" Great! So I will spend the next several hours of daylight waiting for the phone to ring.....hopefully hearing how much fun he had! After all boys will be boys!

2009

2008-12-27T10:21:00.002-05:00

The New Year is fast approaching. Do you and your family make new years resolutions? Maybe this would be a good time to commit to making life with a bleeding disorder a bit easier.

Perhaps 2009 will be the year your child or you learn home/self infusion. Maybe you have a older child that is about to venture out on his/her own. This would be a good time to start or continue teaching and guiding them about their insurance, making appointments, calling to request a factor order, the list is long! If you are a newly diagnosed person/family this may be a year of understanding and knowing that it is ok to add to your family!

I encourage you to take a few moments to reflect on the year coming to a close. I know for me having 3 sons with severe hemophilia we had our share of bumps! Some felt like mountains while we were going over them! We became stronger and closer. For the most part 2008 was a successful year! My sons all learned a litte bit more about themselves and their hemophilia as did my husband and I. We all rallied together when a severe bleed seamed more than we could take. As my eldest lay in a hospital bed post hip surgery in horrible pain I struggled to find possitive thoughts and feelings. It is easy to get caught up in how bad a situation is and have your thoughts be negative. I have found looking for the possitive makes a situation a bit more managable. Yes each of my boys spent time in the hospital this year.....some more than others....sometimes more than one in the hospital at a time. I made sure I reminded myself we are lucking to have a great medical facility to care for our boys and factor to help control bleeding. There are many in the world that do not have this luxury.

As 2008 nears an end and 2009 begins, sit down as a family and reflect on what you have learned what you have accomplished. Make a list of what you would like to do to make life with hemophilia just a bit easier in 2009. We can not always control a situation but we can always control how we handle it! So take a deep breath......you as parents are doing a great job! Be proud of yourselves!

May 2009 bring you much peace, happiness, and good health!
Cheers!
Lori

Ice and the Winter

2008-12-21T22:57:00.002-05:00

Hello to you all. I hope you're all ready for the holidays. This is really a busy time for us all. I just thought I would share alittle story. If your son is anything like my 6 year old, he wants to play out in the snow. We had an ice storm last week and he thought it was cool to slide down the drive way to his bus. He made it all the way down without falling. Later that night we went to get into the car and he thought he would try it again. This time he fell and hit his face. Yes he had a knot and a cut on his forehead and check. He's ok now, but I believe he learned the hard way that ice is dangerous. His sister thought she could play on it because she doesn't have hemophilia, but we explained it's dangerous for anyone. I hope to hear from someone out there. Stay safe and Merry Christmas to all. Enjoy every day.
DeAnn

Hemophilia Moms Breakfast Welcome

2008-11-14T09:35:00.002-05:00

Good Morning Ladies,
Welcome to our second annual Moms Breakfast
Look out the window it is snowing

Thanks for coming

NHF~ Moms Brunch

2008-11-12T08:53:00.002-05:00

Just wanted to blog before I left for the airport to go to Denver for NHF. All the Hemophilia Moms are looking forward to seeing many of you at the meeting! I wanted to let you all know about the Hem Mom brunch we are having. It will be Friday morning at 8:00 in the CSL Hospitality Suite. Be sure to ask someone at the CSL Booth to find out the Suite number.

Safe travels to you all! See you in Denver!
Lori

Happy Halloween!

2008-10-31T11:55:00.002-04:00

This is a day many look forward to. Some families enjoy decorating their house for others to enjoy. Others look forward to seeing all the children dressed up, ringing the doorbell and hearing trick or treat! For some families with children with a bleeding disorder it maybe a day of stress.

When my oldest was young and trick or treating it seemed like Halloween was a day he would always get a bleed. Either he would wake up with one or one would develope during the day or while trick or treating. We soon learned that Halloween was a day to infuse no matter what! It sure made the day easier!

I hope you all enjoy the day to whatever extent you desire! Infuse your little trick or treaters and enjoy!

Having more children after one is diagnoised with a bleeding disorder

2008-10-23T10:25:00.002-04:00

I wanted to start this new blog after 2 Year Olds Mommy posted a comment. She will soon be having her second child and is wondering how others felt when they were in her shoes.

I have 3 sons all of who have severe hemophilia A. After our first son was born it did take a little bit for us to come to terms with everything that comes with a diagnoises of a bleeding disorder. We had no family history so I was lost! Each time I did go through some of the same feelings and fears. However I would have to say with each birth it was easier! I had a better understanding of hemophilia and how to handle it. I had found out before birth that my second and third sons had hemophilia. By the time I was waiting for the results of our third son I'd have to say I was more worried he did not have hemophilia. I did not want anything to be wrong with my child but hemophilia was now a norm in our family. I was worried I would not know how to parent a child that did not have hemophilia.

You have over a year under your belt with your sons diagnoises. Remember you have learned a lot! The biggest advise I can give you is to enjoy your new baby! Everything will fall into place for you and your family! We are always here for you ...to support you and to celebrate with you! Please keep us posted on your delivery!

Best of luck to you!
Lori

NHF...Are you ready?

2008-10-10T21:54:00.002-04:00

Can you believe in less than 5 weeks NHF will be in full swing? If you are traveling to Denver for this wonderful meeting are you prepared? Remember to get your travel letter from your HTC so you will not have any problems bringing factor and supplies on board if you are flying. If you will be traveling by car it is a good idea to find out where the HTC's and hospitals are on your route.

Do any of you have some travel tips that have worked out for you? We would love to hear from you!!

Lori

Factor at School

2008-10-07T21:25:00.002-04:00

Well school is well underway for the kids. Hopefully it has been a smooth start for you all!

My two youngest are in 7th and 8th grade this year. They both self infuse so we keep a dose of their factor at school should the need arise. This did take some time on my part to educate the school staff on what it was and why it was a good idea for the boys to have it at school. I am just wondering if any of you have had any problems getting your child's school to allow you to keep factor there. Maybe some of you would like to share your stories of how you have educated your child's school staff. There are so many ways to insure your child has a smooth year at school with his hemophilia not the main focus. Please share your ideas and experiences with us! We love to hear from you all!

Lori

Good Morning all you San Diego Baseball and Golfers

2008-10-04T12:45:00.002-04:00

Welcome everyone
Katherine and Yolanda are visiting San Diego at the CSL JNC today
Please tell everyone good luck
Rhonda

New School New Nurse

2008-09-29T18:52:00.002-04:00

My son is 14 and a freshman in High School
We have a new school nurse, which means we have to re-educate the educated
They had on his health plan to call 911 for a paper cut, this was a hard sell but I was able to convince them to allow us to pick him up in stead
No seriously they honestly felt that he was that much at risk , so spend the extra time to talk to them have your child show them how he infuses and so on
there are many sources out there for informtion or even in person inservice days with the school
your HTC, homecare and or yourself
remember knowlege is powerfull, share the wealth
others may want to share thier stories

Crazy Things

2008-09-26T00:10:00.002-04:00

I have spent the week in and out of the ER and doctors office with my 14 year old. Cody has severe hemophilia A. Sunday he woke up with a very stiff neck that continued to get worse as the day went on. We did factor at home and contacted the hemotologist. We went into the ER to check for a neck bleed and to make sure all was ok with the airway. Things did not get better over the next few days so they ended up admitting him to the hospital. Cody's neck was causing him quite a bit of pain and his head was always off to his left side. Many tests and imaging were done. What we found shocked us all! He has a clot in his jugular vein. Yes, my son with severe hemophilia had all of this pain from a blood clot! And guess what the treatment is? Several weeks of blood thinners....but he has hemophilia and if there is one thing we have all been told over and over again is you do not give blood thinners. We are trying to give daily infusions of factor with his daily injection of blood thinner. I am wondering if any of you moms out there have experienced anything like this? I've been searching the internet for days without much luck so I thought I would reach out to all of you!

Looking forward to hearing from you all!
Lori