Busy Busy Busy ~ Life Is Really Busy

Well where can I start…so much has happened since the last time I’ve updated you guys on Bianca. Maybe I’ll just touch on some key moments from the last three weeks.

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!

BIANCA'S BIRTHDAY CELEBRATION ~ LOTS OF FUN AND CHAOS!

Week of 09.15.08

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!

Mommy and her little helper decorating the Birthday Cone Cupcakes!

Enjoying her day at school and then w/the Abuelos

That weekend we headed to Nana's house for some additional celebrating! That same week it was also Bianca's cousin's birthday and her aunt's birthday. So needless to say September is a busy month for us all!

~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 Weeks & Counting!

Well tomorrow makes 2 straight weeks that Bianca has gone to school! We’ve done pretty well and I thank the lord above every day for this blessing! We’ve had a bit of a rough start but things seem to be getting underway just fine with Bianca and school!

The Good Stuff

She’s been doing quite well in class. She is participating in almost every single thing in class except for going outside to play in the playground. But that was to be expected and she understands the reasons why she can’t be outside on days where the temperature is well above 95 degrees! Usually she spends the time indoors playing with the blocks, reading stories or doing some sorts of arts & crafts. I usually get a phone call around 10:30AM letting me know she’s doing well and that she’s enjoying herself. She’s able to call me because I provided her with a cell phone to use in case of any emergencies. I’m so happy with the technology that we have today! I think I would be a nervous wreck if I don’t hear from her. If she does not call me around that time then I can expect her to give me a call around her lunchtime which seems to be around 11:30AM.

Last week they had to do some seating arrangements with her classmates. Apparently Bianca was chatting it up with another little classmate and her teacher was not pleased. Bianca’s attention was called a few times while the other little girl was put on time out. Apparently she talks more than my daughter! Next up is a young little boy who she has befriended. She says he’s very nice – he takes out the seat for her and picks up her blocks when they are done. Apparently he’s a little gentleman. You can only imagine how daddy reacted when she told him about this little guy. It was priceless!

She was also rewarded for being a good participant in class last week. The teacher gave her a star and a little notepad as a prize for being such a great student! She was very proud of herself and wouldn’t stop talking about her reward! She LOVES the attention.

Lunch has also been a great turn around for us. Bianca’s appetite is beyond what we would have expected! She eats quite well in school and usually trades her lunch for other items in the cafeteria. I think this “Lunch Time Bargaining” is just too funny and cute! Aside from this she still comes home and asks for more food and milk! I love the fact that her nutrition has not been hindered.

Homework has been pretty fun for her thus far! She is pretty much on top of it. I usually have to explain things to her once maybe twice and she gets it. Lets see how long this will last…we all know how MUCH MORE FUN (of course I say this with a sarcastic tone and eyes rolling) homework gets as we get older!

The So-So Stuff

Bianca has been able to get around the school just fine on her own two feet. She does get tired much faster then the rest of the kids but keeps on going after a few minutes of resting her feet. We have noticed that all this walking around is a double-edged sword. The positive side of things is that she can walk a bit more straightly now and for longer distances BUT her feet are paying the price. They are tender/sore/blistered. Not completely but in certain areas we are dealing with some wounds. I was expecting this to happen since she did have the same problem when she started to crawl/walk. Certain areas tend to be more tender than others because lack of use. At home she was in a more relaxed laissez-faire environment. The areas that are now breaking down will more than likely toughen back up as time goes on. This has usually been the case with Bianca and her EB. Only time will tell. I would not want to introduce a wheelchair for her to use in school unless it’s ultimately impossible for her to walk around without pain. For now we are OKAY!

For the reason above I have left the stroller in Bianca’s school to be used in case of any emergency. This however has not been fruitful. Since Bianca notices that no other kids are using strollers she considers it a burden. She does not want to be seen in it whatsoever! I have had to explain to her that she’s a princess and that princesses get pushed/carried around in carriages. Her carriage just happens to be a hot pink stroller. She really didn’t buy into the story but she has obliged to use the stroller upon exiting the school for safety reasons. She flies out of it as soon as she sees me but other than leaving schools she refuses to use one. Our next option is to maybe have a tricycle she can ride around in the school when she needs to get from one place to another. Another mom who has a son with epidermolysis bullosa suggested this option and I think it might be the best thing! Now if I can only find one with big enough trunk space! I mean she’s all girl and boy does she carry stuff around! I have an idea of something that she might enjoy and make her look “cool in school” instead of the stroller. It’s a little Vespa Scooter. She might be able to get away with using this in school! The psychologist that was observing her today did make the suggestion of a tricycle as well so it might be something we’ll be looking into getting her for her birthday!

Last week she did not get many new booboos. Come to think of it she only got one booboo which happened while she was exiting the bathroom. The doors at the school have some sort of safety mechanism which automatically shuts the door in a very quick pace. I think it’s more of a hazard than a safety. The door moved a bit too fast for Bianca and it nipped it on her left wrist. This was nothing compared to the little girl they heard screaming at the top of her lungs because her little fingers got crushed from the same door!

The Everything Else Stuff

Today I received a call from the district office in regards to having either an aide or a nurse for Bianca in class. The ball is moving, slowly, but it’s moving in the right direction. The school system is having so many issues that I can only hope for this to be resolved by the time Christmas is here! Hopefully before then…but I prefer to not give myself false hopes! At least I heard the statement “I’m going to approve an aide but wound care cannot be performed until a nurse is in place”. They really are trying to ease the burden but it’s tough with all the budget cuts around here. Regardless, I know Bianca needs to assistance in school so this MUST BE DONE. No matter how many times I have to explain myself she needs an aide.

I’ve been able to make the necessary arrangements to take my hour lunch from work everyday at 1:30PM to pick Bianca up from school. It’s been crazy but nothing beats picking your child up from school and listening to all the wonderful things they did in the day! She’s tired and ready to go home but still has sooooooo much energy that I get the news from school hot off the presses! With having no lunch hour to myself any longer I’ve been forced to prepare something for lunch the night before so I can heat up and eat in about 15 minutes. It has saved me some money in my pocket but I know I’ve been putting that back into my gas tank for the extra trips I’m doing 5 times a week! But again it is ABSOLUTELY all worth it! I am actually spending so much more time with Bianca and I can really be on top of her care with the extra time I’m spending with her.

Bedtime has finally been set to 8:30PM every night. It’s pretty difficult to incorporate everything we do each evening into a couple of hours but we manage. She also gets up so refreshed! Still a bit cranky/whiny but after the ½ hour she’s ready to go! I’ve also learned NOT TO get dressed before getting her ready! I use to get dressed first and by the time I was done with Bianca I will have toothpaste on my blouse, powder on my trousers and god knows what everywhere else! So the best thing to do is to get up and do everything I need to do except get dressed, get Bianca ready and then get myself ready! It’s amazing how less stressful it is…I don’t have to worry about my clothes getting stained!

Our First Fundraiser

Okay now this is where we need your help! Sorry for slipping this in here but I’m going to be advertising it all over the place. We have received our packet for our FIRST FUNDRAISER! Bianca is actually pretty excited about it so I will probably end up buying just 20plus items myself. We all know how these school fundraisers go! So if you can go ahead and order an item or two that would be great! You can either check out the catalogs we have with us right now or go online. You can let me know what you’re interested in and I will put it down or place the order directly online.

Important Information For Online Orders – Student Code is VERY IMPORTANT so Bianca can get credit. So make sure to enter it upon ordering.

STUDENT CODE: 448680

SCHOOL: MadieIves ElementaryStudent

Email: simba9960@yahoo.com
http://www.4jaxco.com/store/cart.php?m=product_list&c=7

When you purchase items, you will be allowed to assign 1 point per item purchased to Bianca after you check out. Thanks again for helping her school and Bianca on our fundraising campaign.

Good night everyone ~ I'll attempt to post some new pictures up as soon as I can!