Monday, October 25, 2010

It's Coming in Clearly...

One of the possible problems for an infant that has been in a state requiring oxygen for a period of time, is eye damage. This has been a concern of ours with Benji but not one that is at the forefront of everything else that goes on with him. We have known that Benji has excellent distance vision for years! He would always be the first to see something of interest to himself.

About a month ago, the school system did a health screening and I figured I would follow it up with an eye appointment. I want to clarify that Benji passed the screening. Our reasoning in getting him in to the eye doctor was just for a baseline check because there are vision impairments in the family. (4 of 8 already wear glasses)

This past Wednesday Benji went to the eye doctor. During the exam it was noted that there was a slight farsightedness issue but the doctor was not positive as to how significant it was since Benji could not keep his eyes still. So he was scheduled to go back this morning to have his eyes dilated and a more comprehensive exam.

That brings us to today. Daddy took Benji in and the little guy did very well. He was very curious as to all the equipment, as to be expected. Aside from the drops in his eyes he did not mind the exam at all. Benji was very excited at the prospect of getting glasses. (This was heightened last Wednesday when he saw some with the Red Power Ranger on it.)

The results were worth it. Benji's eyes are healthy. There is no evidence of oxygen burn. He is slightly farsighted and could get away without glasses but, we are going to try them to see if they help with his focus. The doctor said sometimes the "twitchy" eye muscles can cause hyperactivity. So the hope is that with glasses he may be able to overcome some of the lack of focus issues.

Praise the Lord Benji's eyes are healthy and praying the glasses help his focusing (attentiveness).

Wednesday, October 20, 2010

Mom's Real Iron Man

Who knew? Sure Benji is a young boy and he loves super heroes and such, but who knew he would gravitate so much to Iron Man.

Being that Benji's mom and dad are products of the 80s (ish) they LOVE the culture of making movies out of comic book heroes. So it was only natural for this love to be passed down to the male children in the household. (The girls enjoy too, just not as much)
Iron Man (Single-Disc Edition)About two years ago the movie of Iron Man, starring Robert Downey Jr was purchased to add to the collection at home. We cautiously let our brood watch the movie knowing that boys are boys and imitate the action scenes. What surprised us was that Benji was quite interested in the battery Tony Stark put in his chest to stay alive.

At that point, while the action scenes still were the most watched parts, the fact that Benji related the electro-magnet in Tony Stark's chest as a heart was impressive (he was only 3 at the time).

So then we go on for a year until we hear that Iron Man 2 will be in theaters and such, Benji gets all excited about it but we decide to wait until it came out on DVD.

Iron Man 2 (Single-Disc Edition)
Once Iron Man 2 came out on DVD, we got it and Benji thought it was okay. He wasn't excited about it until Tony builds the new arc reactor with the newly created element. Then Benji starts asking us if Iron Man got a heart transplant. It was great in the aspect that we were able to talk with him about his heart and still keep it simple.

The last few months, Benji has been very aware of his heart and his closed heart surgery he had as a newborn. While he is being very inquisitive and asking questions, a parent can't help but wonder what exactly is going on in his mind. There is an obvious fear that he doesn't hide. 

Benji is very vocal about not wanting to have another surgery. We are not sure where this comes from because we do not talk about having to have a surgery. From what our doctor has told us is that his aortic valve is stable right now even though it is bicuspid and there is stenosis. In fact the CoArctation repair is "beautiful" and is doing great! The soonest surgery would occur would be once Benji hits puberty. The rapid growth is a concern on the valve.

Until then, Benji is momma's Iron Man, because his heart is pumping fine and he is my super hero!

Monday, October 18, 2010

Grief... and the lack of Awareness...

In the last couple of weeks, several children with congenital heart defects have passed away. Each and every single one of these precious ones fought valiantly for their lives, but it was not enough.

Congenital Heart Defects do not care how much money your family has, they do not care if your family has support, they do not care if you were a star athlete and took care of yourself during pregnancy. CHDs strike randomly. Occasionally there is some sort of link, but with statistics in the United States with 1 out of every 100 births having some variation of a congenital heart defect? It would make perfect sense for there to be others in the same family to have a defect also.

Not only does my mother's heart grieve for the 13 publicized heart babies that are now in heaven, it grieves for those that do not get public recognition.

I was reminded the other day about a statistic that surprised me considering the awareness surrounding it. Did you know that Downs Syndrome occurs at a rate of 1 in 800-1000 live births? Autism is estimated to be 1 in 120 children. Why doesn't Congenital Heart Defects get the same awareness?

 How can this be so?

While there have been GREAT strides in the improvement and development of procedures for correcting CHDs, there could be even more breakthroughs with more funding and more awareness.

Need More Information? Check these Websites.
To visit other sites trying to bring attention to Congenital Heart Defects, please go here.

Tuesday, October 05, 2010

It's just not fair!

I had been waiting to post about this. It is not that I am putting a particular school system or even special education down. I am very frustrated with what has transpired with Benji's education in the last couple months. I appreciate all the compassionate teachers and therapists that have worked with Benji and have got him to where he is.

My complaint, or whine, is simply that it's just not fair!

At the end of Benji's preschool career, he was more than ready for kindergarten. He was writing his name very well, knew his full alphabet and could count to 20. Plus he knew all of his basic colors and shapes (even the harder ones like trapezoid). Over the summer I casually worked with him. Not necessarily on a daily basis, but when the opportunity struck. (I believe in using the environment to reinforce what has already been taught)

So that brings us to kindergarten. There was the mandatory Brigance testing, he did well but not as good as he could have. This I contributed to him being stubborn and not knowing the teacher that was doing the testing. However, his handwriting became illegible and then we started noticing that on his classwork he just doesn't do it. He will color with the right color, but when it comes to writing he wasn't doing it. In addition his coloring became scribble.

I brought this up and was told that because he is "on par" with the rest of the class that he is fine. It seems that the way our school district interprets the IDEA 2004 is as long as the child isn't significantly behind other children in his grade and are not causing a major distraction in class that they do not have the resources to help them. I said I wasn't happy, but I knew I would get nowhere.

I then decided to focus on other issues that I knew where going on.   Benji complains about writing. He says it hurts. (In preschool because he was not a righty or lefty, he was pushed to use his right hand. His right hand is his weaker hand due to his medical stuff.) So I asked about doing the OT evaluation that both his PT suggested and that VCH had suggested. By the time my request got back to the OT that does the evaluations, she assumed that I was complaining about Benji's sensory stuff. (Benji has sensory integration disorder as dx by Vanderbilt Bill Wilkerson and agreed on by Vanderbilt Childrens) Instead of calling a meeting or sending me an email or letter, the OT confronted me at church. I was dumbfounded. I was also speechless because I was told that I didn't know what was best for my child. I was also lied to.

I am not going into details because it doesn't matter. The school system is refusing to do the OT evaluation. So now, I have to schedule an OT evaluation, again, so that he can get the help he needs. Yes, he has sensory issues. The good thing is we have them covered at home. I have been trained how to help him with that and we work with him. The reason behind his OT evaluation is because I suspect he may be a lefty like his brother and writing with his right hand is awkward for him. He no longer holds pencils and crayons correctly, even with the grips. His left hand is weak. He needs help, but until he is substandard he can not get it from the school system.