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?