Tony's continuing story
This page is my latest attempt of making an easier way of viewing my RB page. For my regular visitors this page is going to act as a sort of daily "Diary". On this page, I plan to put the things that I feel are important aspects of Tony's development and progress. I hope others will benefit.
Please feel free to comment on anything that is written here!
I am putting the most recent entries at the top of the page for easier viewing!
2-13-2001
Hello all. I thought I would take a minute to let you all know that I am still
here. I have been very quiet lately (almost a year).
I guess it's about time for me to write and let all of you know that I am going
through a divorce. After 7 years of "giving it a go", I through in the towel on marriage. I'm a bit ashamed
of the whole situation. I feel that I've failed at something and this is fairly difficult for me to admit.
None the less, it's a fact that I have to fess up to.
Tony appears to be doing alright with it all. It seems because of his
intellegence and advanced understanding that he has found his way of coping with the situation. Although the
whole thing is not complete, I have been moved out for almost 8 months now.
Aside from some playing of parent against parent (mommy doesn't make me do ...) and
perhaps a few bad dreams for a couple of days in the beggining Tony seems to be hanging in there. I will try to keep
you posted of Tony's progress.
That aside, Tony had an enjoyable 7th birthday. Seems like just yesterday when he was born!
I'm going to be searching through all the messages sent to me from parents that I've
hung on to. I will try to post those this week coming.
|
4-16-2000
Hello all. I've finally found myself a little time to sit down and write
Things have been going fairly well. Tony is doing fairly well in school. My wife and I have been
struggling a bit with Tony and school.
It would appear that Tony has a few problems at school. As mentioned elsewhere
on this page, people with RB appear to have a higher than average IQ. Tony seems to be no acception.
He is in gifted and talented classes at his school, despite his visual impairment and age (kindergarten).
The problem seems to lie in his social skills.
We've seem for some time that Tony wants to take control of situations.
Being at school is no acception for him. With a few things against him in the social arena, he
appears to be struggling. Being that he's visually impaired, he doesn't have the advantage of
seeing the teacher tapping her foot when he's doing something wrong. So he continues to do
things that are not quite "right". The other disadvantage that he is at is the fact that
he's basically bored. As seem with many above intelligence children, he already
knows the information being presented, he's bored. So to occupy himself, he tends
to "pick" on other children.
To cut to the chase, Tony has a problem "keeping his hands to himself".
This statement is bothering me a bit. Let's think about this for a minute. If you are a blind child,
unable to "see" things in the conventional manner, how do you experience or "see" things?? Isn't
it obvious? You touch it. Am I the only one that sees this? Now, I'm not saying
that he should be allowed to do anything that the other children are not allowed to do.
He has to learn to co-exist with his peers and to relate and to make friends, but
isn't this what kindergarten children do? They touch and hit? What is a visually
impaired child to do?
Maybe I'm making to much of this. I'm not sure. One thing is for sure:
I'm not sure as to what to do about it at all. We continue to meet with his teachers and principal.
We continue to talk to him about what's going on in the hopes that he will be able to discover
his world without getting detentions.
Anyway, time for me to get on to other things... take care and I'll try to
write more often.
|
10-5-1999
I won't make any excuses. There really are none. I've just been busy as usual and haven't
had the time or energy to sit and write.
You should be able to tell (if you're reading this message)
that I've been doing some work on the web page. It was in dire need of updating and I kick
myself for not keeping up with it.
I was terribly distracted a couple of months back. I recieved
a terribly upsetting letter saying that I was not available when someone wanted to chat
with me. I can't begin to tell you how I felt about that! I feel that I've spent a tremendous
amount of time and effort in helping others when there was no support for parents of RB
children. I was so close to deleting the whole page... actually I did for a couple of days
I was so upset! Then my wife told me that I should step back and look at all of the peole
that have thanked me for having the page available. I did and that's when I really realized
that even though I've become less available, this is something that I enjoy doing. I enjoy
being able to help others; having the page there does that even when I'm not directly
available. Quite frankly, I receive many e-mails that just plainly say "please send
me information". While I wish I had the time or resources to create a packet to send
to people, I just don't have either. ALL information that I have is
information that you see on these web pages. I'm sorry if that's not enough, but
that's all I have.
At any rate. I'm back on the sattle and will be trying to
catch up to where I left off. I'm going to be trying to update the page to be compatible
with the new html standards. I'll also be trying to catch up with all the e-mails that
I've neglected.
|
6-7-98
Tony's out for the summer. While we look for things to keep in busy, he's keeping us busy with his "Thank goodness it's summer" attitude.
As usual, I've not had enough time to do much to the web page. It does seem to still atract new people to read through the things that I prepared, nonetheless, I feel guilty that I've not put much time into the page.
Until next time, c'ya.
|
11/10/97
Has everyone missed me? Did you all think that I must have fallen from the face of the Earth? Well, sorry to tell you the answer is I'M STILL HERE. Just busy.
Well, quite a lot has happened since I last wrote.
We took another trip to Memphis for an EUA. We figured that was the 31st time Tony had been under General Anesthesia. Things went well! No new tumors and the eyes looked "clear" (we had a hemorrhage and cholesterol build up in the past). In fact, it's been 2 years since Tony's last tumor and he's now over 3 years old. This means that he should never have to have another EUA. We will be going for office visits periodically (I think every 6 months) as a continued protocol.
Shortly after we returned from Memphis, we took a trip to Disney World in Florida. That was interesting! Tony's first Airplane trip! Things went fairly well I think. We live near an airport and just told Tony that we were going to go on "one of those" every time one would fly overhead. Since we've been back he's talked about wanting to go back, so he must have had some fun.
I've also been tied up with a couple of other things. I've created a web page for Tony's school that he's going to now Harahan Elementary School That has taken up some of my time.
Another thing that has taken some of my time and interest..... I've recently purchased a couple of "Jet Ski's". I know what you're thinking.... "but it's winter". Well, this is the best time to buy, and besides if you're familiar with the weather around New Orleans, our "winter" is usually about as cold as others summer.
Well, I promise to update more frequently! Drop a line if you're in the area. I always like to hear from EVERYONE.
|
I am putting the most recent entries at the top of the page for easier viewing!
9/3/97
Tony started school just recently. He had been going to the HUD (Human Development Center); but has now started "real" school.
Now Tony attends Harahan Elementary School. This is a local public school which has a very good VI class. He will be learning many things which will help him in the future. For instance: they plan to start teaching him how to read braille, and maneuver with a cane
It is a very strange feeling for me. If someone would have told me a couple of years ago that my child would be riding a school bus to and from school every day at the age of 3, I would have told them they were crazy. He seems to be coping with the long days at school well though. I think things will work out just fine.
|
7/3/97
We recently went to Memphis again for another EUA. Things went well. We had a good report: No new tumors, the cholesterol that had built up in his right eye was completely gone, and the blood that had been in his left eye is also completely gone.
We were also told about a sort of new test that they are doing. I had heard of the test where they test the hearing of very young children by doing a sort of EEG to check for brain wave changes as a result of stimulation of the hearing mechanisms. Well, we were told that they can do a similar test to see if there is any impulses reaching the brain as a result of light stimulation in the eye.
We feel very excited about this because, (next time we go for an EUA) they can do this test and we will finally know if he's getting any sight response in his left eye. We are not expecting there to be, but would like to know for sure. We may also be able to find out which areas of his right retina are being used. They can specify certain areas of the retina and check response that way as well.
|
5/27/97
I am happy to finally announce that all of the potty training efforts seem to finally be working!
Tony has been staying dry for about a week now, and has finally started using the potty for all his business.
I don't know if anyone else has had a problem of this sort. I think that it's just your usual sort of young child raising problems.
|
3/31/97
Tony had a nice Easter. We had experienced in the past what chocolate did to him, and tried not to let it effect how much of it he ate on Easter day. So.......
He was REALLY "wired" yesterday after eating who knows how much candy
In any event, we are doing fine, and had a rather nice Easter
|
| 3/21/97
I called to talk to my mother-in-law (Lisa's parents watch Tony during the week when he's not at school) yesterday. I needed to ask her a question. She set the phone down to check something and Tony picked it up and started talking to me.
I've talked to Tony on the phone before but it has been a while. It wasn't until this moment, on the phone, that I realized how much he has grown up. Lisa's mom didn't have to stand there and tell him what to say. He was able to answer my questions all by himself. They were very simple questions like what did you have to eat, what have you been doing etc. But now, he can answer them all without prompting from someone on that end.
It's a small thing, but at the same time, a pretty big thing.
|
Our most recent trip to Memphis and Tony's EUA
We are happy to report that Tony's most recent EUA was a complete success.
In past exams, Tony had a sort of cholesterol build up in his right eye (the only that he has sight in). This was cause for major concern. If the cholesterol would continue to collect, it would have caused his Retina to detach and cause him to loose all sight that he had remaining. It was believed that the cholesterol was there because of a "leaky" blood vessel. If there was a blood vessel who's walls would have been weakened by radiation, and would have been leaking blood, the body would have taken all other components of the blood quicker than it does cholesterol. If his vessels were so weak to be leaking, would they have ever been able to be repaired? Luckily, the cholesterol has gone away as mysteriously as it appeared, and we don't have to be concerned about it any more.
Another thing that was of somewhat concern for a while was a "bleed" in his left eye. For some reason there was a collection of blood in the left eye that was going away very slowly. Since he doesn't see from his left eye, we his parents, weren't terribly concerned about it. Our doctors, on the other hand, were. Their main concern was that if they were not able to see his Retina, how would they know if there was a new tumor growing there or not? The good news is that the blood is gone now, and there are no signs of any active tumors in that eye.
All in all, this was not a bad trip to Memphis. It is a little difficult in that it is a 5-7 hour trip, but with good news, it's all worth the while.
|
|
Before I get at the most recent matter (trip to Memphis and EUA), I want to share with you a little something that happened while trying to have pictures taken last week:
Just like many times before, we took Tony to have his pictures taken. This time was anything but "like the other times". As usual, we had Tony get up on a table that was covered with a thick carpet (your typical table for taking pictures) but unlike any time before, Tony had a "fit". It took us several minutes trying to console him before he would calm down enough to allow any pictures to be taken.
This whole experience was something that I was not expecting at all. It took me very much by surprise at the time. Since then, thinking about what happened it became very obvious that he was associating the lights and the people around him and being on a table with his exams. Something that has become a very serious and upsetting situation for him.
I'm not exactly sure what to do about this. I'm also not sure if there is anything that we can do. When Lisa went to pick out which pictures she wants, Tony reacted in another, very opposite way. Instead of screaming to get out, he was screaming to get in and have pictures taken. He was saying "Is it my turn?" I don't think that there is anything that really needs to be addressed, but I'll tell you something, when we were there for such a "normal" activity and he reacted so violently, it really made me "hurt" inside.
|
|