Spring Break!

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

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

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

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

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

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

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!

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

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