Week of 09.08.08
As soon as I posted our last blog that Bianca was doing so well in school and had not missed a beat the following week she woke up w/an eye blister! =( Needless to say I could have kicked myself in the head for even putting it out there that she was doing so well! She missed 3 days of school and well she wasn’t too happy about it. This was the worst eye blister ever! We did manage to do the week’s homework assignments so it kept her spirits up that she was returning to school. In the meantime this gave me time to get all the stuff together for her birthday party!
This same week we met w/her school to go over her needs for an aide. Since Bianca was out and couldn’t physical attend the meeting I brought w/me her medical pictures from when she was first born and then recent pictures of her wounds. Talk about driving the point home! Thankfully Bianca’s pediatrician – who is the best in town Dr. Socarras from Pediatric Associates in Aventura ( http://www.pediatricassociates.com/ ) – has always been so flexible and accommodating to Bianca’s needs. He submitted the forms necessary for the Florida Department of Health to approve what is needed for Bianca in school. After a long 1 ½ to 2 hour meeting everyone was in agreement that Bianca needed a Paraprofessional (One on One) plus what was even more amazing is the fact that a nurse was also requested due to Bianca’s needs for periodic bandage changes while in school. I was so happy with the way this meeting turned out. It really showed me that there are schools in the Miami Dade County system that sincerely cares about our children’s need. Even though these are services WE ARE entitled to another school – which shall remain nameless – literally told me to “be prepared to put on your gloves and bring your lawyer” to fight for what’s rightfully ours.
This same week we celebrated Bianca’s birthday. This year’s theme was Barbie and the Diamond Castle. It was an absolute blast! The kids played in the pool all day while the adults mingled around the house. It was also a beautiful day out! We could not have asked for a more splendid day! We are so amazingly blessed! Needless to say we were pooped out by the end of the day. We were all hibernating the following Sunday from all the craziness. Thankfully my sister in law (Rosy) and mother in law helped TREMENDOUSLY in cleaning up while the party was going on and after. I do not know where I would have been the following day if it weren’t for the bighearted assistance in cleaning up the mess left behind. More than likely I would have had an extra crappy Sunday cleaning up by myself. God love them!
Well our week started off pretty good. Bianca headed back to school. She had lost her groove so we were starting ALL OVER AGAIN w/the tough mornings and lazy school days. I would usually get a call from her asking me to go and pick her up. But I told her to stick to it and she’ll be fine. We headed to see Dr. Socarras for Bianca to get vaccinated. What a fun way to start your birthday week huh?!? Once there Bianca was weighed and measured plus an array of other items. The usual stuff when you go to the doctors. Bianca is officially 44 ½ inches tall and weighs 55 lbs. In 1 year and 8 months Bianca had gained 17 lbs and grew 3” or was it 2”? Regardless that is proof that the dilatation we had done in May ’07 was a true success. I’m hoping we can go for at least 2 years before the next one – hopefully more!!!! So say a prayer right now about it for us or just send some positive karma our way! We’ll take it all.
On Tuesday we (or I) baked 44 cone-cupcakes! I was up until midnight getting them ready for Bianca’s school. Since it was her birthday that Wednesday I thought it would be nice for her to have a “mini-celebration” at her school. It was a hit! She came back home w/tons of birthday greetings from her classmates. Kids are amazing and Bianca of course LOVED the attention. On that day Abuelo Armando and Abuelita Maria Luisa picked her up from school! Once again THANK GOODNESS for grandparents! They brought her a small cake and sang her happy birthday!
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!
2 comments:
I'm glad to hear that Bee got approved for one on one that is great. While Zack is LOVING school his feet are totally taking the brunt of it too. Happy belated birthday wishes too.
Wow, no wonder I haven't seen you online lady! You guys are BUUUSSYY.Very cool cone cupcakes by the way, glad Bianca had a terrific birthday!
HUGS TO ALL,
Jenn
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