Thursday, June 30, 2011

I wish that I could say............

that I have been MIA because we have been doing nothing but playing non stop BUT that is not the care. Monday was the first day of summer school for Bubba. I brought him to the Middle School site expecting a change but I did not expect what I found. They were not in any way able to care for my sweet Bubba and take care of his needs. After being put in three rooms we finally ended up in a room with AC, which he needs because the heat triggers his seizures. Yes, this close to the beach not all class room, MOST in fact, do not have AC in them. So, he ended up in a room with 18 children, 1 teacher, and 2 aids. All of the children were sitting in chairs with desks on them, telling everyone their name and what they like to do. There was not a mat for him to get out on, no changing table, no books, no toys to stimulate him, well... NOTHING much at all. Now, I understand that the first day of summer school is always a bit crazy but this was just down right AWFUL!! So, Regan and I sat by Bubba's side observing and well we didn't like what we saw. The teacher was nice and was willing to TRY but really what could she do???? So, I decided to leave with Bubba, as soon as I stepped out of the class room I burst into tears. I could not believe what I had just seen and was overwhelmed by the thought that Bubba would not have a safe place to go. Then I looked down and Regan and she was in tears, she knew what this meant for her. Bubba can not go to the beach and do the fun things in the sun like she LOVES to do in the summer. She knew that those things would most likely not happen. So, here we were.... me trying to pull myself together, Regan crying, Bubba bored, frustrated, and yelling. At this point I said to myself "NO... NO this is not right!!!!" So I marched our sad little group back to the office and insisted on talking to the principal. I let her know how upset I was with the placement and that it was NOT OK. Her response made me even more infuriated... as she looked at the other woman in a soft voice "Oh, this is her first time with Middle School....." No, this has nothing to do with Middle school and has EVERYTHING to do with my child!!!!!!!! She then went on to explain that Middle School is an academic setting and that this is just what it is. By this point Bubba was crying. So, I let this woman know that I was NOT happy and that I wanted an appointment with her. Now, let me explain that this will not be Bubba's site for the normal school year we have gone to and witnessed the teacher there and LOVE it and look forward to working with her, this is just the summer school site. So, I loaded my two sweet children, Bubba's wheel chair, and their sad Mommy into the car and headed home.

As soon as we got home I started to feverously clean our home because we had a nursing evaluation with the new company that hopefully find Bubba the PERFECT nurse.  I managed to get everything nice and cleaned, put on clean clothes {no time for a shower}, and got ready for her arrival. After waiting 50 minutes yes 50 minutes I called to find out if she was coming. "Oh, I had a flat tire...... MAYBE I will be there in a couple of hours." Umm.... really!?!?!? I then tell her that we will just have to reschedule for the next day. I was so upset and defeated by this point. An entire day wasted.... and the next was filled with apts.

Luckily I have the most amazing friends and they took Regan while I went back to the school the next day. I went in ready to get angry, scream.. do what ever it took. Something funny happened, I walked in to find this woman defeated, defensive, and ready to fights. It was obvious that she had been beat up on all day. So, I changed my game plan. I was kind and kept reassuring her over and over again that I was on her side and just wanted what was best for my child. I am glad that I did change my game plan because it worked! I walked out of the room with a new game plan, exactly what I had hoped for. A new summer school site. :)

I also met with the nursing coordinator. I am very hopeful that we will be able to find the perfect nurse for our sweet little Bubba.

Today I went back to the school for an addendum to his IEP so that he will be able to go to the new site. Then I had to go to the new site to drop off all of the information. It was hard and tiring and none of the fun things we had planned were done BUT at the end of the day my Baby boy will be taken care of and that is the most important thing.

I have so much to update and cute things to post but for now I will leave you with some fun pictures from ther other night. Monday night I had a photo shoot at the beach and Regan BEGGED to come, I gave in. I would not normally do this but it was my free give away shoot and it was with friends. So, I knew it would be OK. It was just what the two of us needed after a VERY hard day.

The perfect way to end a hard day...
 the beach, watching the sunset, and eating ice cream.

Sunday, June 26, 2011

One week and one day from now..............

My Baby boy will turn 11 years old!! I can't even believe it!!!  Birthdays are always a huge thing for Bubba. We were told that Bubba would not make it to his first birthday and when he did we felt so blessed. I can't even begin to describe in words how grateful we are to have had so many more beautiful years with Bubba that we were not "supposed" to have. One our brave and amazing TTD angles went home to heaven the other day. Tyler was only 15 years old. My heart is breaking for his mother and the huge loss that she is feeling right now.  So, as we start the celebrations for Bubba's 11 years of life I can't help but reflect on all of his wonderful, brave, and sweet TTD friends that were not blessed with as many beautiful birthdays. Please keep Teri and all of the other wonderful TTD moms that have lost there sweet angels here on earth in your prayers. I feeel blessed to have known each of these beautiful children is some small way. They have each taught me so much and life will forever be better because they were in it.
We felt it only right that for Bubba's 11 year pictures we let him steal a bus! wink!!! 

Wednesday, June 22, 2011

On the summer list.........

Reenact Lord of the Flies........

The end.

Our summer list....

We have a summer list, you know all of the things that we HAVE to do this summer or Regan might just die! I have to say that I am excited about all of them, some are old favorites and some will be new adventures. New is always a little scary around here with Bubba but no matter the out come we still try. (Yes, some days Bubba and I BOTH leave crying.) I also have my own list and on the VERY top of it..... FIND BUBBA A NEW NURSE. We have been with out a nurse since Dec.!!! I know crazy right!?!?!? We had to "fire" the old agency that we used and have now found a new one. Monday morning we will meet with their nursing cordinator to see if we can find Bubba his very own Marry Poppins. Last summer we were blessed with an amazing nurse that became part of our family and due to a broken wrist we were not able to have her care for him this summer :( I have faith that the right nurse will come into our lives and be PERFECT for Bubba..... I mean really how can you not fall in love with him the second you see him smile!?!?!  So, as I sit here and stare at our lists the theme song to the show Phineas and Ferb comes to mind (oh, come on don't even act like you haven't heard it! wink!!)

There's 104 days of summer vacation
And school comes along just to end it
So the annual problem for our generation
Is finding a good way to spend it

Like maybe...

going to disneyland
Or reading chapter books
Or going to the aquarium

Discovering something that doesn't exist (Hey! )

Or going to the LA zoo
Surfing mini waves
Creating sand castles

Or locating  our lost flip flops

Finding a train to ride
Painting some artwork
Or driving your sister insane
As you can see
There's a whole lot of stuff to do
Before school starts this fall

So stick with us 'cause Bubba and Regan
Are gonna do it all
So stick with us 'cause Bubba and Regan
Gonna do it all!

So far we have managed to.........

Play with friends at Chuck E Cheese 

have lunch play dates! 
Meet up with our New Jersey friends at Disneyland.... 
take down the evil Emperor Zorg.....

build ride a rollercoaster.... 

Learn to drive......... 

have fun with Nana....... 
and finally...... steal a bus!!!!!!!!!!! wink!!!!!

What is on your summer list??

Monday, June 20, 2011

Hello Summer....

Today was our first offical Monday of summer break.
So, what else is there to do but ....
have a party of course!
We started our party off with food.
You can't ever go wrong with food. 
Then things got a little wild and the clothing started to come off! 
Today was one of the first warm days of summer and the kids were EXCITED! 
We put the pool in the shade so that Bubba could go in too.
Pool + no sun = COLD pool 

Then it was time for the slip n slide!! 

Bubba LOVES the slip n slide.
(his board shorts came off :) 

A few friends stuck around to watch a movie... 
and play on the computer.
I know I have said it before but I LOVE how much Thyssen loves Bubba. 
Then these wise guys showed up and tryed to cause trouble. 
I thought I was going to have to call the cops on them. 
and this one.... well he was the biggest trouble maker!!!

We have a fun filled summer planned and are ready to PLAY!!!!

Thursday, June 16, 2011

It was a Sad, Sad day...........

This morning was the very last flag ceremony at Buffum Elementary.
It was different than any other morning assembly we have ever had.

There were tears.........

MANY, MANY tears........

Even the sky cried at the thought of Buffum closing. 

Good byes were said......

and hugs and kisses were shared. 

Boxes were packed and ready to go......... 
and the doors to Buffum Elementary have been closed.
To all of the AMAZING staff at Buffum......