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 Posted: Tue Mar 29, 2005 7:15 am
Hey guys! iiiim baaack. updates galore imma post em all later ^^~hugs all~ marc and i are "taking a break" hes having a hard time with i think eric he doesnt wanna see all thats wrong with him or get himself a decent job and blah blah blah so weve decided to just take some time off, he never calls but neither do i so we'll see what happens on the plus side eric is really upbeat today so im taking him out and about ill bbl ^^
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Posted: Tue Mar 29, 2005 7:29 am
Hello, My son Andrew passed away at 22yo 6/1/03. He had Angelman Syndrome and a whole slew of medical issues. Here's the last pic we took together. He's really not that tall he was on the stairs. 
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Posted: Tue Mar 29, 2005 10:02 am
Fletchen, thanks for the idea with the sinus rinse, i hate going to the doctor and taking pills all the time to get rid of this......i will suggest that rinse to my husband so we both can try it because we are both suffering of sinus issues all the time.......and thanks for the info about the sensory disorder, i will bring that up with pediatrician when i see her......it could be a possiblity for him.....and i hope your biopsy turns out fine, and that there's nothing wrong.
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Posted: Tue Mar 29, 2005 10:05 am
Hello Talendre, and welcome here, i'm so sorry to hear that your son passed away, he was so young.......i'm not exactly sure what angelman syndrome is, so i'll have to look that up. once agian, i'm very sorry for your loss.
Monkey, i'm sorry about the situation with you and mark.........but i'm happy to hear that erik is upbeat today. that makes the day go better.
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Posted: Wed Mar 30, 2005 5:51 am
Angelique~Yuna Fletchen, thanks for the idea with the sinus rinse, i hate going to the doctor and taking pills all the time to get rid of this......i will suggest that rinse to my husband so we both can try it because we are both suffering of sinus issues all the time.......and thanks for the info about the sensory disorder, i will bring that up with pediatrician when i see her......it could be a possiblity for him.....and i hope your biopsy turns out fine, and that there's nothing wrong. Yuna ~ You're welcome. I wasn't familiar with Sensory Processing Disorders before I was told that Robert had one. LOL. And the Sinus Rinse just seems like another version of a Neti Pot. (BTW - I hope you don't mind me sharing information like that here. I don't always know what I'm talking about, but I do try to throw ideas out there in case it can help someone. ) wink
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Posted: Wed Mar 30, 2005 5:54 am
Welcome back, Funky Monkey! We missed you. I hope things are going well for you today. Sending you big hugs! 3nodding
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Posted: Wed Mar 30, 2005 11:05 am
fletchen Sensory Processing Disorders before I was told that Robert had one. LOL. And the Sinus Rinse just seems like another version of a Neti Pot. (BTW - I hope you don't mind me sharing information like that here. I don't always know what I'm talking about, but I do try to through ideas out there in case it can help someone. ) wink hey Fletchen! no i dont' mind you sharing information, i'll take all the info i can get, and if it helps you, it certainly might help me..... whee ........i'll ask the ped. about the sensory stuff.........i'm glad you brought it up, for i honestly never knew about it....
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Posted: Wed Mar 30, 2005 3:49 pm
Talendre Hello, My son Andrew passed away at 22yo 6/1/03. He had Angelman Syndrome and a whole slew of medical issues. Here's the last pic we took together. He's really not that tall he was on the stairs. ^^ hello and welcome im so sorry to hear about your son...feel free to yell cry chit chat pretty much anything in here we have some of the bestest people here.
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Posted: Wed Mar 30, 2005 3:53 pm
Angelique~Yuna oh Monkey *gives you a huge hug* i'm so sorry.......poor Erik, to have to go through all those tests......what a trooper he is, and you for taking him there, and being a huge supermom.......i hope everything turns out well in Erie, and i will pray for everything .......and i hope the roads will be safe and make sure you guys drive safely......and don't every apologize for being whiny, that's what we are all here for, i'm here for you anytime........ btw, i tried to pm you, but you won't allow pms.... XD oopsy i fixed that i think o.O hows ben doing? well i hope... we had another good day here and eric can write his name 0.0 and knows his #'s 1-9 ..yet he doesnt know what a cow is XD i guess its typical but kinda funny..and he called me momma today whee it rarely happens but im super happy when it does ^_^
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Posted: Wed Mar 30, 2005 3:57 pm
Pitterpatter Well, to be honest, [graceangel on her charity mule] what's really compelled me to work twice as hard with him on his issues... in a few years, he's gonna be elementary school age.. the age where kids will notice things that are different.. and possibly make fun of him.. and i'm trying to help him help himself as to prevent any of that... I know I was delayed on some stuff... oh, i'm not sure if i mentioned this before... but if any of you have children with speech delay, and they use sippy cups. Switch to the cups with the straws on them. The muscles they need to suck on the straw helps develop the muscles in their mouth they need to speak. Naaman's speech therapist suggested to me to switch to them... i did.. i got two.. and even started moving him to normal cups and just give him straws... adn he's doing well with them. i mean.. he's still not bursting out with conversational language skills.. but at least he's talking some.. and when you are dealing with special needs, it's good to be thankful for all your breakthroughs. Be thankful for any progress, because that means they are learning and developing even if it's slowly. 3nodding were in the same boat and amen to that even the smallest step is a huge victory~big hugs~ w00tw00t for you guys and keep it up 3nodding and i also agree it worries me but they said eric will probably never go to a "normal" school i dont want that so im busting my butt and praying that it works ^_^
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Posted: Wed Mar 30, 2005 4:03 pm
fletchen Funky Monkey, Oh! Sending big hugs your way! I have one of those two-hour drive appointments coming up for Robert in a couple of weeks. xp They're no fun, but it's important to get them the best care that they need. wink And, you're not whining at all. We go into Boston for follow-up appointments to discuss how Robert is doing with his dysgraphia, ODD, ADHD and Sensory Integration Disorder. But at least I don't have to worry about my kids having surgery now. I'm going in to have a biopsy a week from Friday. I have pre-op testing this Friday. I'm dreading the whole thing. It'll take them a couple of weeks to test the tissue to find out if its cancerous or not. Yuck! oh no i hope it goes well ill pray for you
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Posted: Fri Apr 01, 2005 8:38 am
that's awesome that you had another good day, and that eric know's his numbers, and called you momma, i can hardly wait for the day when ben does taht.....we are all doing ok here....i'm just a little tired this morning...... it's good to hear from you.
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Posted: Fri Apr 01, 2005 7:31 pm
Welcome aboard Talendre,
I'm sorry about the loss of your son. I admit that I'm not at all familiar with Angelman syndrome. Perhaps you can tell us about it?
Everyone seems to be very nice here. wink It's a very supportive bunch.
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Posted: Sat Apr 02, 2005 9:06 pm
Hi all.. well, not too much to report. Oh, I finally found a book Naaman really enjoys a lot. It's called "Are you my mother?". It's part of the learn to read series. He does like it; so i keep reading it to him. And, then i give him the book. He runs off with it somewhere to look at the pictures. lol. I seem to have misplaced my baby einstein flash cards. gonk I think i was cleaning.. and with my as of late horrible memory, i can't remember for the life of me where i moved them too... geez. this is why i leave a lot of stuff sitting in the living room. cuz if i see it; i remember. if i don't see it; i forget entirely. well, we are working more on our routine for the potty. working on washing our hands. I hear him singing something to himself.. but it's jumbled.. and i have a hard time making out what he's trying to say. but, he had all this past week off.. so he goes back monday.
Oh, but there was a commercial on tv.. with bunch of kids talking. and he ran over to watch teh commercial of kids talking. that is a good sign to me. that was him interested in what other children were doing.. that has to be a good sign about his social development.
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Posted: Sun Apr 03, 2005 9:26 am
fletchen Dragoon_Arcadia Sorry I haven't been here in ages! My brother Phillip has a fit and he had to go to hospital, they kept him there for over a week, but he's ok now...I'm just glad he is doing good. Miss me? I haven't been on in a while, either. stare Sorry about that. Is your brother doing well now? What's up?
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