First Family Weekend

A couple of weeks ago we went to our first family weekend with the Nova Scotia chapter of the Canadian Hemophilia Society. It was held at Brigadoon Village which was really nice. We met a lot of really nice people. Like, the kind of extra nice people who are more than happy to share their own stories and listen to ours. It was really good to feel part of this whole community of support.

Ty fishing at Brigadoon

Thomas was a great boy while we were there and got lots of hugs and kisses from his new friends. He's becoming such an amazingly good baby. He had a rough period from about a month and a half to three months but now he's just a pleasure to be around. Ty LOVED the camp, too. He had so much fun and it was such a relief to us to see Ty playing with the boys with hemophilia and to see that there was really no apparent difference between him and them. If anything, Ty was probably the most timid of the boys his age. Actually, there were a few boys very close to his age which made me think that if he had been born with hemophilia, he would have been lucky to know other boys locally. Thomas might not get that.

Sleepy Thomas and I at Brigadoon

As we were leaving, we realized that we didn't explain to Ty what the point was of the weekend. I told him on the way home that those boys he was playing with had hemophilia like Thomas and that's what everyone there had in common. He asked why he got to go and I explained that he'll always get to go to those things because he's a family member of someone with hemophilia. Sometimes I feel like I need to be careful to not make it sound to Ty like Thomas is special. I don't want him to somehow resent Thomas because he gets to do special things or has access to things he doesn't. It's kind of a hard balance to make Ty understand that Thomas is different without making it seem like Thomas is different... if that makes any sense at all! My hope is that hemophilia can just be a small part of our lives with Thomas not feeling like he's any different and Ty not treating him any differently. It will probably be something that will just naturally happen but for people with unaffected siblings, feel free to weigh in on that.

In other news, we've gotten through another round of immunizations. We did the exact same as last time, held pressure then wrapped little dressings around his legs and put ice on the sites for about 10 minutes. We had a late appointment so we left the dressings on until bedtime. When we took them off his right leg was bleeding just a bit. It was really superficial, just from the insertion of the needle but we wrapped it up again and left it for the night. It did end up bruising but nothing major at all.

Our next challenge coming up is our hematology appointment on November 3rd. He needs bloodwork which will likely be a disaster considering those roly-poly arms. He's 23 pounds now at four months old!!

First Bruise

Two days ago, Thomas and I were getting ready to go get Ty at the bus stop after school. I put Thomas in the Ergo and as I was doing that, put my hand behind the back of his head like I always do. I felt a little lump there, almost at the base of his skull, right in the middle. At first I described it as the size of a marble but really it was more like a pea. I was rushing to get out of the house so we wouldn't miss the bus and since I had Thomas inward facing in the Ergo, I went and looked in the mirror. There was a little purple bruise right on top of the lump. It was a little bigger than the tip of a pencil eraser.

I called Steve as we were walking up the street. This was the first time we've seen any bruise on Thomas. It worried me that I didn't know where it came from and it worried me even more because it was on his head. We agreed that I would call the doctor as soon as I got back home.

We're lucky to live close to a children's hospital with an excellent hemophilia treatment centre (HTC). I called the clinic and left a slightly panicky message saying if they didn't call me back in a few minutes I would page the hematologist. I don't know if all HTCs work this way but we're able to page the hematologist directly 24 hours a day and they encourage us to do so. So, after waiting about three minutes, I had him paged. He asked me a few questions and I described the lump to him. He told me to keep a close eye on it and if it changed at all or if Thomas behaved differently, to bring him in for factor. Eek. You can read my post about immunizations to learn about my concerns about factor at this point but the bottom line is this: we want him to have his first dose of factor in the absence of a bleed. That puts him at a lower risk of developing an inhibitor.

We did keep a close eye on it all evening. I lined up my mom to look after Ty in the event that we had to go to the hospital. But it didn't get any worse. Thomas acted normal. He fussed when I touched the lump but no more than anyone would if someone was poking at a bruise. Here's what it looked like that evening.

At this point it was already starting to look more red than the purple it was earlier.

Last night when I was putting him in the bath, we folded up a towel to go under his head. The edge of the infant bathtub lined up perfectly with the bruise so I'm quite confident that's where it came from. It makes me feel better to know what caused it and that it's not just random. Today the lump is still there but the bruise is kind of a light brown. It's healing just like I would expect anyone's bruise to heal.

If there's anyone reading this with a kid with severe hemophilia, is this normal? I would have expected worse. When do severe hemophiliac kids become symptomatic? Or maybe this is symptomatic. Maybe a normal kid wouldn't have gotten a bruise from an infant bathtub at all.

Thomas has had his bloodwork done only once, at birth. Steve has been wanting his factor level rechecked for a while and our hematologist has plans to do it in November before we start prophylaxis. I've heard stories of kids who were found to have lower levels than they had at birth so I guess it's possible that his level could be higher than it was. I try to not even think about that. Trust me, I'm not in denial. But I do tend to develop unrealistic expectations about things sometimes. My fear is that when we have the bloodwork done in November and it comes back as <1% again, it will be like getting the diagnosis all over again. I'm trying hard not to expect anything other than <1% but he just seems so normal. Is this still some sort of newborn protective period? Or do all hemo babies do this well in the beginning?