First of all Happy Halloween! What do you think? Over did it with the bloody skulls? :)
Well moving on the next topic...in the next few weeks we’ll be having EB Awareness Week as we have been doing so every year since 2007. The bill was originally signed by Congress (HRES335) & the Senate (SRES180) in 2006. As much as I would like to admit that I’ve been “all over it” to raise awareness it has been nearly impossible this year! But I promise you that next year we should all come together and bring awareness to such a rare condition.
So let’s try and break it down here and there regarding Bianca & where we are 8 years later...WOW 8 years already?!?
Bianca has been doing exceptionally well in school! She is in 2nd grade and has integrated herself pretty well into a “normal” classroom setting with very little hiccups. This of course could not happen without the help of her full-time nurse who is absolutely an angel sent from above plus her wonderful teacher who has taken a great liking to Bianca. There’s nothing more important in any child’s school environment then a great understanding between teacher and student! She’s currently in a 3.5 reading level (A.R), a straight A student (well the occasional B here & there plus maybe a B in conduct) & she has finally gained some balance in the weird confusing world of mathematics ~ for now!
As far as health Bianca is hanging in there…she’s about 4 feet tall and weighs 62 pounds. Thankfully this has all been successful without the need for a g-tube. I can’t believe how lucky we’ve been thus far considering that the norm for kids w/her type of EB (RDEB) usually need some form of feeding assistance or procedure just to maintain a healthy “healing” cycle ~ plus they don’t normally gain weight or height. Don’t get me wrong we have moderate to severe mouth involvement due to EB but someway somehow we’ve been able to keep her on a regular eating schedule that has actually helped maintain her esophagus open. Her last dilatation was back in April ’07 and to go 3 years and 6 months without another single dilatation well it’s as close to a miracle that we’ll be happy to take! Along with the many other miracles we’ve had in the last 8 years! I honestly believe that giving her Zantac (or any acid reflux medication of your choice) on a daily basis has been the most optimal choice for her esophagus to go for so many years without dilation.
We’re still trying to figure out the situation with her clubbed foot. She still has a limp and gets tired on her left foot pretty easily but thankfully she manages to get around. You see the double edge sword here is that if we go ahead and do some form of procedure on that foot (where the skin is COMPLETELY healed and has been for years) we risk having a constant breakdown where there was never one…talk about the lesser of two evils. But who knows maybe she’ll be the first to decide to go ahead and get something done to “fix it”. For now we’re fine and why would we want to mess with fine?
This is really it as far as health goes ~ very little happening considering her original diagnosis. Dentist has been a trial and error situation. We love our dentist but Bianca still does not want to be touched or cleaned by her…so for now a few visits just to say “Hello” and a quick once over should suffice…on our next visit hopefully x-rays and a cleaning will happen…but in the meantime momma has the scraper on hand…not ideal but it has kept her teeth in great shape!
Everything else seems to be “hanging in there”. We’ve had a few eventful situations both good and not so good…but nothing we cannot overcome T~O~G~E~T~H~E~R! That is the key!
Here are some websites you should check out regarding EB: