The Magic Shin Guard

Well I finally figured out how to add pictures onto my profile. lol. Forgive me. I'm new to this whole blogging stuff. This is my baby Luis Jr. or as my sister has nicknamed him "bubble boy". I like to call this his modeling pic because he has such a serious look on his face. Well as I might have mentioned, Luis got another bleed in his left knee on 1/23/09. Well thank goodness for being able to infuse at home. His hemotologist has called me twice a day since then to check up on Luis. We are currently giving him factor every 4 hours and it seems to have worked great. Today he was moving around a lot more and doesn't seem to be in as much pain. Yea he still drags himself across the floor like a little wounded soldier, but it's a big improvement from what he was a couple of days ago. Oh yea, I should mention what we use when he has a bleed in his leg. One day I was at my mother-in-law's house and his leg was already in pain from a bleed. I was so frustrated because he started to cry with every wrong movement in his leg. I looked around my 12 year old brother-in-law's room and found one of his shin guards from soccer. I grabbed it, put it behind my son's leg, closed the straps and that was it. He was so much more comfortable for the rest of the day. Because it's a shin guard, it curves nicely around his leg and the straps tighten above and below his knee so nothing is touching the swollen part and it keeps his leg straight and unable to bend. I still have that shin guard and have used it ever since for knee bleeds. He's actually using it now. It's been a lifesaver for me and I wanted to share this just in case anyone wanted to try it one day.

Here we go again

My son's name is Luis. Since he's been born he's had spontaneous bleeds in both wrists, both ankles, both knees, and lower back. Many areas more than once. Every hospitilization has been difficult because of the fact that he's getting what doctors call "target joints". It's when bleeds keep occuring in the same spots. It scares me because his hemotolgists told me that too many bleeds may cause that specific joint to freeze in one position. He's 17 months old now and still hasn't walked. Everytime he gets closer, there's a bleed and it delays him again. This morning he woke up and was not able to crawl or stand up on things like he usually does. I took off his clothes and began checking his legs. I noticed no swelling anywhere, but he'd cry when I bent his left knee. This knee has been a problem before. The doctor said to give him factor every 6 hours and he'd call me later. By the time he called in the afternoon, Luis's knee had gotten worse instead of better. He said to infuse every 4 hours and that he'd call me in the morning and take it from there. It's so frustrating. I couldn't help but cry. My son has been getting factor every 8 hours for the past 2 months and he still gets a bleed? How will I ever make it to three times a week? (which was the plan after we left the hospital 1 month ago). He was getting so close to finally taking his first steps beginning last week and now this. It's just been one thing after the other. He currently has inhibitors against factor 8 so he's getting frequent doses of factor 7 to bipass factor 8. I just pray to God that he's not getting inhibitors against this too. Here goes another night of no rest. Next infusion at 12:30am then at 4:30am and so on. When will this get easier?

1st time hemophilia mom

Hey everyone. My name is Kathy and I live in NY. I am 23 years old and my son was born on Aug. 29, 2007. He was diagnosed with severe Hemophilia A a few days later. My life has been like a rollercoaster ride since he was born and I've felt very alone through all of this because there is no history of hemophilia in my family so I really knew nothing about it and am still learning. I'm glad to have found this site and look forward to exchanging stories.