PICK ME!!

Benji is fundraising for Saving Little Hearts and he needs your help! The fundraiser ends August 1st.

We have a late start, there are others WAY ahead of us, but our goal is to support Saving Little Hearts INC.

What do we need you to do? Go to http://www.firstgiving.com/bensbrokenheart

Then make a donation. The donation goes to Saving Little Hearts so that they can send out more care packages to families that have a child going through surgery. In addition, the child that has gotten the most money raised will be on the cover of the 2011 Saving Little Hearts Calendar.

Silly Saturday - Bowling Alley

So, as I eluded to in the previous post, we went bowling today. All and all we had fun, and Benji got a strike!

We know that Benji needs to build his endurance so we try to do things that help. With the www.KidsBowlFree.com promotion this summer, we have gone bowling several times. Most of the kids really like it.

Today Benji used a 6 pound "junior" ball through the first game. (This strike was in his first game) In the second game he got very tired and we used a ramp for him so he could still bowl, it just didn't take so much out of him.

Momma's sweetie.

 Please forgive the bluriness... he would do this everytime he bowled... no wonder he got so wore out. He would throw himself down and then roll around and finish it off by hopping like a frog. :)

Reality points out Regression

As most parents know that have a unstructured summer break, their kids have a slight regression where they forget some things or start acting out do to lack of schedule.

Up until today, this is what I thought was going on with Benji.

He has wet the bed probably about 5 times in the last month, and while that may not be OMG bad, for him it is very unusual. Once he potty trained he never had an accident until now. To have 5 in the last month...

If night time pottying issues were the only issue I still wouldn't be really concerned.

We have noticed immature behaviors surfacing. Things like constantly sucking his thumb and twirling his hair. Throwing himself on the floor. Very much sensory seeking type behaviors. Also baby talk has come back.

With all of these behaviors I didn't really think it was that bad, until we went to the bowling alley today. Benji's sensory stuff really kicked in. Loud music, stimulating atmosphere, the process of bowling... midway through the first game he was wanting deep pressure hugs and his silky. We played two games and wasn't sure he would make it through the second one. He would put his head on the vent that bowlers use for their hands and let it blow his hair. He kept throwing himself on teh floor and rolling around. It wasn't the things he was doing that stood out though, it was the way he was doing them.

This all just brings back my concerns over the school change and his lack of Occupational Therapy. Just praying on that one. I already know the focus is going to be about the heart condition, but he has tone and sensory issues that have to be addressed for him to succeed in school.

How can a child learn if the classroom is distracting? How can a child learn if the noise hurts?

One day at a time and relying on God. That is the only way we can get through this.

There was one moment when we were getting ready to leave this morning that he just stared off. It took me shouting his name to acknowledge us. This isn't the first time, but shoot... I day dream and it looks like I am just staring off. *sigh*

Changes

So, mom says there has been a change in plans with school. It seems that because of increased enrollment that I won't be able to go to the school we thought I was going to. I am not too sure what to think about it.

I will be going to school with my brothers though so it can't be all bad, right?

Mom says she just has to be more diligent about my IEP now. Since the new school doesn't know me, it's going to be like meeting a stranger. I can tell she is worried. It's like there are certain things that have to happen and then there are things that need to happen and what decides which is which.

I hope the new school is fun.

Getting Ready for School

So, I found out that one of the reasons mom organized her desk is because she is working on making a packet for my kindergarten teacher and the school nurse.

Mom is a little nervous about me going to kindergarten. IT doesn't seem to matter that I was in preschool at the same school since I was three. She says the difference is that it was only 3 or 4 half days a week, instead of 5 full days.

The things mom has to do for me are a little different than for my brothers and sisters. I have one sister with asthma, but that is pretty straight forward. She has a doctor's release for her inhaler at school and that is about it. One of my brother's has some sensory stuff like me, but it's mild and that's a simple "Hey, he needs to not be over stimulated or he gets very anxious and hyper."

For me, there is so much going on under the surface. I suppose it's like a creek or river, it looks calm and still put under the surface is a strong current.

The obvious with me is my heart. Having the bicuspid aortic valve with stenosis, I need to be watched for fatigue and cyanosis. So for recess and physical education I need to be allowed to rest. Then I have officially ketotic hypoglycemia. My blood sugar drops when I am sick and when I get hot. I usually only have problems during the heat of summer or if I get sick. We have a glucose meter to watch it, plus I can only have natural sugars. No HFCS, no splenda, no aspartame, no saccharin. The endocrinologist really emphasized that, said the others are obvious, but HFCS (high fructose corn syrup) is really bad. It is not recognized by the body as a sugar, plus the body craves it so you would eat more of it than you would something with sugar in it.

I have food intolerances too. I can't tolerate dairy products at all. It's gotten to the point to where I have really bad tummy aches and throw up. While that is a bad intolerance, it's not the one that worries mom. I have a VERY bad reaction to things with red 40 dye in them. I get EXTREMELY hyper until I pass out. (last time it happened it went for about 11 hours) Then when I wake up I feel like I have a "hangover" (dark circles under the eyes, headache, tired, sensitive more than usual). These worry mom because most people don't understand that not eating this foods isn't an option. It's a have to avoid.

Then the rest of the stuff is the mild hypotonia, the sensory integration disorder, etc.

Anyhow... mom is looking to gather everything together to make her little packet and also get doctor letter's to verify. Please pray for her. She gets emotional sometimes when dealing with all of my stuff. She wants things perfect but knows it's not possible. :)

Hey There Friends!

Hey there! I am reaching out to my Congenital Heart Defect Friends. I want to make a page to link to all of my friends so that others looking for CHD information can have a place to look for it. In fact... We are making a linky....

Please list your CHD website information for the Thumbnail Linky below.

And the Bumble Bee said Buzzzzzzz

Today was a scary, yet exciting day. I was playing outside with my brothers while daddy was working in the yard with G2. Mom was making Iced Mochas, YUM!

While I was running around all of a sudden I felt a sharp pain in my leg and looked down and saw a weird reddish orange bug. I cried, daddy scooped me up and ran me in the house as I told him something stung me. Mom grabbed an ice pack and started talking about how irritated she was with Johnson and Johnson along with McNeil Labs. Apparently, I can only take Tylenol (or acetaminophen) if it is dye free and in rare cases I can take Benedryl, again dye free. With those medications on recall right now, there isn't anything over the counter that I can take.

The good news is that with the ice and elevation, the poison from the sting stayed put. Plus, Papa offered trying a wet aspirin on the sting held on with a bandage... it worked. After an hour of laying on the couch and playing video games, the sting site was no longer swollen and the pain was gone.

Now... my irritation with pharmaceutical companies can be expressed...

It seems that Johnson & Johnson knew of problems with their children's Tylenol and Benedryl long before the FDA stepped in. Complaints are over a year old in some instances. While not everybody has to have dye free medication, I do. Honestly I don't understand why they put the dye in the medication. There are no benefits from it. In the last few months in our small community we have discovered several others that also have to avoid red 40. My symptoms are a rapid heart rate and extreme hyperactivity. It lasts for hours and when I finally collapse to go to sleep, I sleep and sleep only to wake up with my head hurting and feeling horrible. My cousin gets sick off of it too...

Anyhow, what good is medication if I can't take it because of the "inert" or "inactive" ingredients?

Support Saving Little Hearts #chd

When my mom and dad found themselves sitting in the NICU at Vanderbilt Children's Hospital having just learned hours earlier that their beautiful little boy had been born with congenital heart defects, there was one group that gave them support.


Saving Little Hearts had a support group to meet in the hospital while I was there and they also provided mom and dad with one of their surgery packages. The package was great! There was information on what congenital heart defects were, there was Ronnie the Raccoon (which we still have), some snack foods, calling cards, and alot more. The care package let my family know that somebody cared and that they weren't all alone.

So now it comes time to support Saving Little Hearts.


Saving Little Hearts has a chance to win $20,000 from the Chase Community Giving Program but we need everyone's help. All you have to do is go to http://apps.facebook.com/chasecommunitygiving/charities/10744266-saving-little-hearts-inc and click on “vote now." There are only 5 days left and if we can get into the top 200 charities we will receive $20,000 for surgery care packages. Please vote and ask everyone you know to vote. This donation will change the lives of so many families. We can't do it without you. Thanks for your help!

Wordless Wednesday - 4th of July

Our next door neighbor decided to get fireworks and shoot them off at their house. Rather impressive, rivaled the big fireworks in White Bluff on the 3rd... obviously got better pictures on the 4th.

Having a good ole time!

First Lost Tooth

In the middle of Kroger out came the first wiggle! What a big boy!