Well here we are one week later. School has been over for a week and I have to say we feel a little bit displaced! Who would have thought...
Bianca's last few day in school were great! She enjoyed every last bit of it!
"The dance of life must go on, no matter how much the tune of the music changes."
Enjoying her day at school and then w/the Abuelos
~More celebrations at Nana's house!~
The week progressed on and Bianca has finally come back to her groove with getting up in the mornings. Our days are busy and they’re filled with so much to do. Even though I am tired and physically aching from all that we do now I would not trade this “normalcy” for the world!
Bianca and her skin
Bianca is putting a lot of stress on her skin now that she’s in school fulltime. Her body is fine but her feet are taking the brunt of it all. The ankles are now constantly breaking down and I’m trying to find new/innovative ways to wrap them. Yet when I finally do wrap them the wrappings are causing stress blisters around the edges. So we’re back to a very simply yet light wrap. It’s crazy! Bianca is not wild about the idea of having a wheelchair but I think that she (and maybe a few others) will have to come to terms that she might need it for school. I guess it will all really depend on her. It’s just a new assignment on my list of “Things to do for the Quality Of Life for My Daughter”.
Overall we're at a happy place! Everything is flowing ~ a few bumps along the road ~ but we’re hanging on just fine! I just cannot wait for cooler weather! Even though cooler for us Floridians means anything below 80 degrees!
Good night!
~Bianca Ready For Another WONDERFUL Day At School!~
Well here we are – made it through a whole “week”, sort of speaking, of school! I was able to get Bee dropped off in class on time ~ well about 40 minutes early! I managed to take the time to speak w/her teacher to see what concerns she might have…she said Bianca is doing well just that she seems very tired by 11AM but that she doesn’t think it’s anything to do w/her EB just a transitioning period of her not being used to work work work like a busy bee! But other than that she said she’s integrating well into her class. Today was an example of a great day! She did all her homework in class ~ draw an Orange Bird and a Yellow Duck ~ she received yet another HAPPY FACE! But that didn’t keep her and her new little friend Lisa out of trouble! You see they seem to TALK quite a bit in class. (God for those that have known me for a while who those that sound like in school?) Lisa ended up in timeout and Bianca was one more word away from being put in timeout herself. Who would have thought - my daughter la chismosa! I can only wonder who she might get that from…as soon as we got home she pooped out again. She was super tired and you can tell by her eyes. This poor girl has been waking up at 6:40AM every day. And that’s simply because I have to do some very minor wound care on her to be able to be out of this house by 7:20AM. By Friday Bianca managed to become friends with three new friends in her class, Molly, Emily and Lisa.
~ Woundcare ~
So how are we holding up? Within all pretty good. Unfortunately the booboo on the bottom of her foot peel opened again. It’s a pretty raw wound but it’s in an area that I can bandage up just fine. Then we have two dime-sized booboos on the back of her thighs. They’ve been heck to heal since they’re in a high-traffic area. But they’re slowly closing off. Aside from all this she has the two new wounds she got at school. They’re hanging in there just fine…I consider ourselves pretty luck that we’ve only got two wounds to worry about from school THUS FAR…and yes I’m very well aware that the year has just begun!
~Home Life~
Well home life has absolutely shifted quite a bit! All that time I use to find myself just sitting around doing close to nothing but pay bills, think of debts and what I have to work on for tomorrow are long gone! My day goes something like this:
So as you can see I have a jammed packed day. And that is that I’ve missed a few things here and there….but honestly I’m enjoying my life at the moment. I’ve always been very happy to be in my house w/my family creating a home/memories side-by-side.
In closing I would like to say that we’re doing better than I’ve expected by this time…I was thinking before that I might have received 3-5 phone calls in a day asking every little question about Bianca. But thankfully the staff at Madie Ives Elementary is the most caring/understanding staff I have encountered. Plus they have such a wickedly funny sense of humor! Just my type of peeps! =)
Well that’s pretty much her first few days at school ~ FULLTIME!
Please keep us in your thoughts and prayers plus send many positive vibes our way to keep going w/such a hectic schedule! Unless it starts taking a toll on Bianca’s skin this will be the schedule we will abide by for a while!
Love now and always
~Sally Contreras
Proudest Mommy On Earth of the cutest Kindergartener in the WORLD!