Friday, January 2, 2009

My son is 3 months old he was born on Sept 19,08 T 8:58AM HE WAS 9LB 5OZ AND HE HAS SEVER HEMOPHILIA A <1% CLOTTING FACTOR. HE HAS NEVER HAD FACTOR YET THE HEMOPHILIA CLINIC SAYS THAT HE IS IN S HONEYMOON TIME NOW. DO YOU THINK THAT IS TRUE? THEY SAY HE WILL NEED FACTOR WHEN HE STARTS TO CRAWL. WHE DID YOUR BOYS NEED FACTOR?I HAVE ADVANT FACTOR 8 IN THE FRIDGE IN CASE WE NEED IT BUT HE HAS NEVER HAD IT YET.I AM SO WORRIED ABOUT HOW I MAM GONNA HANDEL THIS I LOVE HIM SO MUCH AND I DONT WANNA SEE HIM IN PAIN.I CHECK HIS WHOLE BODY EVERY DAY FOR ANY MARKS OR ANYTHING I AM JUST SO SCARED THAT I AM GONNA MISS SOMTHING.
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6 comments:

  1. JaimeJanuary 3, 2009 at 7:59 PM

    Hi Joanne

    My son is 19mo old and is also severe factor 8. I asked everyone one of the questions you are when we found out at 8 days old. You can read my blog since then to see what journey we have been on since he's been home www.thecowancrew.blogspot.com. Please also feel free to email me directly and I can give you all the adivce I can as well as give you the names of some other parents I've met with kids under 2yrs old. Just know that you are NOT alone and that you can get through this. Email me and I'll see if I can answer your questions or at least point you in the right direction. jcowan10@yahoo.com

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  2. sarasarasaraJanuary 10, 2009 at 5:24 PM

    Hi Joanne, my name is Sara and I also have a son that has hemophlia a. I know the exact way you are feeling and can completely sympathize with the way you are feeling right now. I keep a blog about my son at www.imbruisednotbroken.blogspot.com.

    Please feel free to email me as well if you have any questions or just need to let out the feelings you have. I have been there and can tell you that it does get better. You will start to understand how he is feeling and when he is hurting.

    sara.m.workman@gmail.com

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  3. Laurie KelleyJanuary 11, 2009 at 5:10 AM

    Hi Joanne...feel free to email or call any time. Do you have a copy of my book "Raising a Child With Hemophilia"? 21 years ago my son was born Spet. 8 with hemophilia, and I know what you are going through. Feel free to check out my web www.kelleycom.com, where there are lots of free books and resources. Or email laurie@kelleycom.com. Hope to hear from you! Laurie

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  4. ForresterMomJanuary 13, 2009 at 2:21 PM

    I sent you an email but I wanted to leave a comment as well. I have to say the same as these mom's. Laurie Kelley is a great resource. The boook suggested is good and she has lots of great resources out there as well as a newsletter. Also remember that he is a baby first. I felt exactly the same as you at first. In fact I would call the htc nurse whenever Will would cry! But babies cry and you will know if something is wrong. I don't scan his body everyday anymore and I know when a bruise is bad or good. We haven't had a bleed yet and Will has been crawling for a few months now. In fact I just met a mom whose son is 5 and just started prophylasis just this year! A with the others, email me anytime: Rridnghood@aol.com

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  5. Mike G.January 15, 2009 at 5:18 AM

    Joanne,
    My son Michael was born with Severe Factor VIII deficiency in May 2007 and we didn't find out about it until January 2008. I would agree with the honeymoon comment, since Michael had no visible signs until he was almost 8 months old. One thing I think everyone will agree upon in the Hemophilia community: there's alot of support out there. So like the posts above feel free to contact me: michael(dot)gemelli(at)nyct(dot)com. We live in Northern NJ so even if you wanted to meet me and my wife and our kids (we also have a 3 year old daughter) I'm sure we could arrange it. At the very least read my son's blog: http://michaelthomasg.blogspot.com and know that you are not alone.

    All the best,
    Mike

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  6. lexi.gavrilosMay 26, 2012 at 4:50 AM

    Hi joanne, i read some of the comments and i think i have a different perspective on things.
    i have severe hemophilia a i have a 2% clotting percentage. i wasnt diagnosed till i was 18 months old because in those days hemophilia in girls was rare, and being a spontanius mutation, my parents went through alot with me in the process. i remembered as a kid my dad liked to put me in a bubble. daddy's girl i spose. i think it would be harder for a boy because theyre so prone to physcial activity and sports, when i was old enough my parents put me in music instead, piano lessons, choir. When i would go outside i would wear helmets and knee pads and elbow pads. i didnt learn how to ride a bike till i was 12 years old. ive never climbed a tree, dad wont let me drive yet and im 20 years old. what im saying is be aware, and make your son aware once he understands whats going on, but understand theres a line. he'll eventually understand and be able to tell what his limits are.
    on a different note im on factor 8 xynthia. it used to be something else because they change it all the time. but we used to refrigerate ours but it took up too much space after a while so we dont anymore. check if it really does need to be refregerated, storage was a challenge for my parents.

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