Sunday, January 4, 2009
2008
So we made it through 2008 without a major bleed. Without a port or home therapy. We were lucky ones. At least that's how I see it. Being a mom of two kids naturally lead me to my daily mantras. Get through one day at a time and celebrate the small wins. Don't sweat the small stuff. And most importantly, when the going gets tough, always remember that you will never be given more than you can handle. No matter what your beliefs. Being a mom of a baby with severe hemophilia on his way to toddlerhood causes me to say this more than once a day. Oh and that baby having a 3 year old "spirited" big brother pretty much puts me on the fast track to heart attack city many days. Here's what I am also dealing with: The pressure of outside family and friends wondering if Will should wear a helmet. We aren't to the prophylaxis stage yet so some days I am thinking it's a good idea, but most days I think he needs to be as normal as possible. Current situation: Had a mouth bleed over the weekend, got crummy weekend on call help. Used Amicar for 24 hours and stopped. Mouth bleed started again on Tues. also got a nasty bruise on Monday. Ended up getting a treatment Tues afternoon. Just finished 48 hours of Amicar. I'm tired! I almost wish for a bleed to we can start home therapy. The not knowing when it could happen makes me crazy. But overall, I am thankful that we got through 2008 withOUT a bleed. And hey, going to the hemo/onc clinic at Childrens (and the ER for that matter) makes me still realize that we are the LUCKY ones. We can treat this. We can manage this. We can survive this.
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2 comments:
hi, my name is sara and i found your blog through jamie. i was so much like you with the idea of a helmet. i have an older son (who is 10) that is not a hemo and the thought of my little one wearing a helmet made me think that it would impede on him leading a normal life. i got a free one through the hemophilia foundation where i live and i would only put my little guy in it sporadically. he is a moderate hemophiliac (well, we think...his factor levels have been all over the place and we are still trying to pin down his true level). anyway, this past november he had a major head bleed that caused a very scary trip to the er, complete with a seizure in the car on the way there. i now have him in that thing all the time and am so thankful for the times it has protected his head.
i think sometimes as a parent i have a tough time seperating my ideaological view of what my son' life would be like and the reality of the disease that he has.
i know it's a very personal and difficult choice, but i thought i would let you know why we made ours.
and i hope you don't mind, but i am now a follower of your blog. it makes me feel a lot better to see what other hemo families are dealing with. this disease scares me daily and i find a lot of solice in knowing that others get through it too.
Hi my name is JoAnne and i am a mother of two i have a little girl whi is 2 and a half and i habe a almost 4 month old who has sever hemophilia A<1% clotting factor.My son has not had factor yet the HTC say that he is in honey moon stage still for about 3 more months. But my son Peyton james "PJ" is starting to roll over.I am so scared that he is gonna get a bleed and i am not gonna know. My brother who is 24 years old now had Hemophilia too and so did my two uncles.I know that the time is diffrent now from back then and we have better meds now but i am still so scared for him i think to my self "how am i gonna do this?".
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