Another amazing Christmas for the books…
Well, what can I say? This Christmas was nothing short of wonderful!
It was nice and quiet; which was absolutely PERFECT.
We loved the down time, time spent with family, tons of yummy food, and lots and LOTS of playing with cars and trucks… In between all the snuggles on the couch watching Curious George, of course!
Ethan was even ‘somewhat’ laid back – which is totally out of the ordinary for him (ha ha).
Despite it being Christmas holidays we kept with our usual factor routine, which meant an infusion Christmas morning before all the excitement began emptying stockings and unwrapping a copious amount of gifts.
Thankfully, Ethan didn’t seem to mind.
Since we knew Christmas was going to be crazy – and Ethan would be too – we took precautionary measures and gave him a little extra factor ‘just in case’. We are thankful we did, because he took a few bumps and bangs with all the running around and jumping off things he did.
Luckily, nothing major happened.
A few small bruises and a fat lip… Nothing a cherry popsicle and some cyklokapron couldn’t fix!
Aside from that, our Christmas break was ‘normal’ and nothing out of the ordinary in the way of Ethan’s hemophilia.
We are still convinced the factor makes him crazy! He is still the craziest, silliest, most high-energy toddler we have EVER met!
Everything Ethan does is for a joke. He is constantly running around doing dare-devil things with this evil grin on his face which is quickly followed by a mischievous chuckle. All we do is shake our heads and laugh – because he is still so awfully cute!
In spite of his craziness, he is steady on his feet and not as clumsy as most toddlers seem to be. He can maneuver on and off a queen size bed or a kitchen table quite effortlessly. It still amazes me the things he can do… Or should I say, the things he is willing to do!
He is a boy that has no fear!
Backtracking a little, Ethan’s clinic appointment with the hemophilia team in December went super!
The hematologist was really pleased at how well he has been doing and how well his factor (which is a genetically engineered factor eight replacement) routine is working for him. The physiotherapist was really happy as well; no issues with any of Ethan’s muscles or joints and he clearly has no mobility issues!
Over the past several months, Ethan has had numerous bouts of bloodwork done at different times during the day (both before and after he received factor) so they could chart his factor eight levels, see how fast he metabolizes the factor, etc.
While his dosage hasn’t changed for quite some time, they decided to keep it as it is for now. The fact that Ethan receives his factor in the morning works well for him, since he is awake during the time his levels reach their highest.
The factor he receives has a half-life of twelve hours, so his levels decrease by 50% twelve hours after he is medicated. This is usually a time where Ethan sleeps, which certainly works in his favor.
During the end of the second day when his levels are at their absolute lowest (before receiving his next dose), he is sleeping once again. This has drastically cut down on his number of bumps, bruises, and bleeds.
Peter and I are thankful we made Ethan’s factor routine a part of our daily routine. We tweaked our morning schedule to make it work, and we are glad we did. Now it is second nature to us. It is obviously paying off… And hopefully it continues to work that way!
According to Ethan’s bloodwork, his levels are only below 1% for 1.5 to 2 hours, and his levels are only below 2% for approximately nine hours. Unless something out of the ordinary happens, because of our morning factor routine Ethan’s levels will always be at their lowest when he is sleeping (and doesn’t ‘need’ the factor then, per se).
Fingers crossed that things continue to go so smoothly in the New Year…
Wishing you all the best in 2016!
Kerilynn, Peter, and Ethan (and Ovie too, of course)