Posts
I've really neglected this poor little blog. Around the time I gave up writing Thomas was teething and his sleep went all to hell. I was tired and it was hard to sit down and focus on anything. Anyway, I'm still tired but that's no excuse now.
So, a much needed update on lots of things. These days hemophilia is certainly part of our lives to an extent that it wasn't when he was littler but it's definitely manageable. I think things have been easier than we expected to this point. I'll get to some specifics.
Immunizations
Thomas is up to date on his immunizations. We haven't had any bleeds as a result of them. Each time we've made little pressure dressings and applied ice. It may be overkill but since they've all gone so smoothly, I'm not about to mess with success so we'll continue doing all those things every time.
Bleeds and bruises
We haven't dealt with an actual bleed yet but it seems as he's getting older, he's bruising easier and easier. He's looked pretty shocking at times. He army crawls instead of hands and knees crawling so his knees are being spared but his elbows and forearms really take a beating. The worst bruise we've seen so far was on the back of one of his thighs. It was really big and dark purple. It took weeks for it to heal and even now, probably two months later, you can see a light brown mark where it was. We're pretty sure it was from sitting in a shopping cart so now we line carts with his blanket before we sit him in them. That seems to have fixed the problem. It's really unpredictable what will cause a bruise and what won't. We pick him up under his arms all the time (and he's really heavy) but he's never bruised there. Meanwhile, right now he has a line of three bruises on one of his legs that totally looks like fingerprints. Those are the kinds of things I would prefer that strangers not see. I can only imagine what I would think if I saw a kid with what looked like a handprint shaped bruise on his leg.
When we first started prophylaxis (which I'll talk about in a minute) we saw an immediate improvement in the bruising but now it seems to be increasing again.
Prophylaxis
When I last updated, the plan was to start prophylactic infusions of Factor VIII at 6 months. Well, at about 5.5 months we went for a clinic appointment and had some blood work done. It was traumatic to say the least. He's always been a chubby baby and it took three attempts to get the blood drawn, ending with getting it from his ankle. We all decided then that venous access was just too difficult at that point to start trying to do regular infusions. I've been asked why a port wasn't suggested at this point. Our hematologist made it clear that she wouldn't consider any sort of venous access device at that point and while I didn't specifically ask why, I thought it was because the risks of doing that just weren't warranted based on the evidence for starting prophylaxis at that age. I talked about this before but up until very recently, kids usually started prophylaxis around 18 months to 2 years. There is some new evidence to suggest that earlier may be better but I don't think it's terribly convincing. So our plan at that time was to reassess in a few months.
By the time we went for our next appointment I was more than ready to get started. We had some blood work done in the outpatient lab and it went extremely well. Thomas was also starting to bruise a lot more and I really wanted to get him on some factor. He had his first dose on on February 13th at almost 9 months old. It was difficult but not terrible. Two nurses poked him one time each. The second infusion was worse. And the third time, I did it! I was on a high after that because I got it on my first attempt and he did awesome. I thought this was wonderful. I was awesome at it and he was never going to have to go through the trauma of anyone else doing it again. Unfortunately, the times since then haven't been as great. I'm usually pretty good at IVs and venipuncture at work and I really think that people can get themselves psyched out and start missing just because they think they're going to miss. That's about where I am right now. I've put a lot of pressure on myself to get us to a point where we can do it at home and now after struggling through doing it the last three weeks, I'm feeling a little defeated. We go in to the clinic again tomorrow morning and I'm going to do everything I can to talk myself into believing I can do it.
At this point we're doing a 50% dose once a week. I'm not sure how things are going to progress from here. The last time we talked to the hematologist she talked about increasing it as he has joint bleeds. I don't like the sound of that and I would rather prevent joint bleeds altogether. We should have an appointment with her soon so we'll see what the plan is then.
Daycare
My maternity leave is quickly coming to an end and Thomas is starting daycare orientation on April 20th. My heart skips a beat just thinking about that. Our clinic nurse has offered to do an education session with the daycare and they are very receptive to that. I have a hard time talking to them about it because there are so many unknowns. We know what Thomas is like now but we really can't say what things will be like when he starts walking. Who knows what issues might come up when he's playing with other kids and stuff. We aren't really that careful with him right now. He has a soft helmet and knee pads but we never use them. I'm not sure how we want to use those things at daycare. To be honest, my bigger concerns at this point are whether he'll nap there and drink milk from a cup.
So, that's where we are right now. He's such a great little guy. He's had a cold all week and even though he's obviously been miserable, he's still so nice and usually really easy to get along with. I'm looking forward to getting back to work but it's going to be really hard to leave him.
