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Re: My worst fear
[Re: hotairballoonpilot]
#1352290
01/25/13 06:37 PM
01/25/13 06:37 PM
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Joined: Oct 2006
Posts: 7,367
Iowa
burdar
OP
Owen's Dad
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OP
Owen's Dad
Joined: Oct 2006
Posts: 7,367
Iowa
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Right now he is doing great. If you didn't see the scars on his head, you'd never know he was sick. He is running and skipping around all over the hospital. He had a central line installed last week. Now that he knows he doesn't have to get any more shots, he has been a lot happier. Last weekend we went to the zoo and to a car show. He really enjoyed seeing the animals and being able to sit in the new cars. We need to figure out something to do this weekend for my birthday. Then in a week and a half Owen will turn 4. Hopefully he is still feeling fine so we can do something special. Owen had a psych evaluation yesterday. Part of the protocal he is in involves getting a baseline IQ score. That way the effects of the radiation/chemo can be tracked as he gets older. Just like an adult, the average IQ score for a 4 year old is based on 100. Owen's average score was 114. His very lowest score was 101 and his high score was 129. That means that he really doesn't have any weeknesses for his age group...everything is where it should be or higher. We really need to work hard on teaching him what sounds each letter makes so he can begin reading NOW. That way when the effects of the radiation start showing up, he will be ahead of the game. 
Last edited by burdar; 01/25/13 06:42 PM.
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Re: My worst fear
[Re: burdar]
#1352291
01/25/13 07:32 PM
01/25/13 07:32 PM
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Joined: Aug 2004
Posts: 9,654
Southern by Choice
Shoozy
I have a foot fetish
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I have a foot fetish
Joined: Aug 2004
Posts: 9,654
Southern by Choice
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Well Darren, we're glad he is a resilient little guy! Your family continues to be in our thoughts and prayers - we admire how you are dealing with this adversity. Keep the faith - we are.  And thanks for taking the time to keep us updated.
Old, tired, and sometimes broke down. Me, not my car...
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Re: My worst fear
[Re: Shoozy]
#1352292
01/25/13 07:53 PM
01/25/13 07:53 PM
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Joined: Nov 2009
Posts: 190
USA
indy dart
member
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member
Joined: Nov 2009
Posts: 190
USA
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He sure is a good looking Lad. We are praying for you guys.
1970 B5 v-code Superbird
1971 Dodge Charger R/T in GA4
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Re: My worst fear
[Re: burdar]
#1352294
01/26/13 02:36 AM
01/26/13 02:36 AM
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Joined: Jan 2003
Posts: 2,072
Cambridge, Ontario, Canada
CUDAJAS
top fuel
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top fuel
Joined: Jan 2003
Posts: 2,072
Cambridge, Ontario, Canada
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Quote:
Today Owen had a radiation simulation. That's where they set up all the machinery so they know exactly where to focus the radiation.
Owen woke up from sedation very angry today. Hopefully they can adjust the medication so that doesn't happen every day. He was still very upset an hour after he woke up. We had to quickly find a restroom to hide out in because he was screaming in the hallway. That was very embarracing. We accually missed our last apointment because he wasn't calming down.
Hey Darren,
so sorry to hear that the medication is having side effects.
I know how hard it can be to deal with that kind of behaviour (not for the same reasons) and I agree with the other comments, that there is nothing to be embarassed about.
We have had issues with our son acting out etc, and it used to bother me, but now that we understand it, I could care less what other people think. When he is being "difficult" out in public, I do my best to calm him down, using different strategies, and if people look or stare I say screw em.
I understand that this is a difficult time for you, and you have a lot to deal with...but please please do not be embarrsed by it or Owen's behavious, its a disease or the medication. This is just my opinion, but I have learned quickly over the last year, that others people opions do not matter, they have no right to judge you, or your son's behaviour based on what they see.
So I echo what was said above, please do not be embarassed, work with your beatiful little son, try to calm him down and do not worry about who is watching or starring (I let the world fall away in these situations, and it is just me and my son, nothing else matters).
As far as stratagies for calming him down, try anything he likes, we use and ipad quite often (he loves various games) or music, with head phones if he wants (who cares if he walks around with haed phones on) or hot wheels (I wish my son liked them as much as Owen) what ever works.
My apologies for the long winded post.
We are all pulling for Owwn, you and mom.
All the best,
Jason
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Re: My worst fear
[Re: burdar]
#1352297
02/05/13 01:40 AM
02/05/13 01:40 AM
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Joined: Jan 2003
Posts: 5,664
South Dakota
hotairballoonpilot
master
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master
Joined: Jan 2003
Posts: 5,664
South Dakota
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Thanks for the update! Wish him a happy birthday and many many more!! I have been wondering just didn't want to bug you! Do you have a carringbridge site going for him? If so post it so we can follow along!
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Re: My worst fear
[Re: Shoozy]
#1352300
02/05/13 09:24 AM
02/05/13 09:24 AM
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Joined: Jul 2007
Posts: 2,554
Maryland
wally426ci
master
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master
Joined: Jul 2007
Posts: 2,554
Maryland
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Happy Birthday Owen!! There was a TV commercial a few years back where the boy shaved his head for the girl. It would be really cool if you went through the "hair loss" process with him. I assume you have your hair still at this point. Keep him smiling!
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Re: My worst fear
[Re: burdar]
#1352302
02/05/13 10:43 AM
02/05/13 10:43 AM
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Joined: Jan 2003
Posts: 5,664
South Dakota
hotairballoonpilot
master
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master
Joined: Jan 2003
Posts: 5,664
South Dakota
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Here is hopefully a positive info for you. Friends of ours little boy who just started kindergarten who has been battling cancer for the past 3 years just was able to get his hair cut in a very very long time. Keep looking on positive side. It will happen!
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