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Post by Emilysmom on Oct 18, 2012 19:52:59 GMT -5
Emote, vent, etc.....all you want, Jackie!! I totally agree that this "less public" forum has always seemed like a better place to share about our kids. I can't begin to imagine how hard the last six months have been for all of you.
Emily has gained so much independence in the past year while being away at school week after week. I notice it more each weekend when she comes home! In many ways, it is very positive. Now that Jordan is away at college, I miss Emily at home during the evenings even more. I don't recommend empty nesting to anyone!
A few weeks ago, I got a call from someone at Emily's school. The woman said she and Emily had been talking about Emily's plans when she graduates in May. Emily firmly told the woman she was planning to attend TRC next year. TRC is TN Rehab Center. They have a residential school, similar to the one she attends now, but with more of a focus on independent living. In fact, they have a program where students are paired up and live in an apartment for six months with supervision, etc. Emily bowls with a girl who is currently in that program and loves it. So, the woman told Emily she would call me and we could set up a tour of TRC. Emily's response?? "No.....don't call my mom. This program is for me. It's mine. I'm doing it"! The woman was so proud of Emily for making up her own mind, etc. But wow......I'm never prepared for those times when she wants to leave me out!
A little update: We went back to the neuro/opthamologist in Columbus OH last week. Her vision has continued to be improved from those first horrible months in 2010 when we were told she would soon be totally blind. Her vision in her right eye is now 20/60 and 20/200 in the left eye. She's functioning very well now, and we are so thankful!!!
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Post by Emilysmom on Oct 14, 2012 21:17:30 GMT -5
I think we are very viable! I come here once or twice a day. I was thinking the other day that it's sad that I can come here twice a day for a week and the only new post I find is by some creep advertising "asian escort services".
I shouldn't speak for anyone else, but I do think that some people enjoy the fact that they can post stories on FB that are seen by all their friends at one time.....not just their friends who have children with Down syndrome. There are positive things about that for sure. And at the same time, there are things I'd be willing to share here about Emily that I wouldn't post on FB.
Any other thoughts on this?
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Post by Emilysmom on Oct 12, 2012 21:04:04 GMT -5
Welcome back!!
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Post by Emilysmom on Sept 12, 2012 6:33:15 GMT -5
Mary Grace, I'll ask Adrienne your question, and will get back to you. I think she'll know. Emily has never had adaptive PE, but believe it or not...........she continued to have PT/OT at school 3 times a week through her Senior year! It didn't get discontinued until she moved to the school for the blind last year. They did cool activities with her like jumping on a trampoline, areobic exercises to music she liked, etc.
Susan
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Post by Emilysmom on Aug 23, 2012 7:47:33 GMT -5
GREAT to see you here, Tricia!!! Emily got a new cell phone for Christmas, and it's one of the ones with no data package. It has a flip screen with larger keys that makes it so much easier for her to text. (she has sort of chubby fingers!) I just got a new phone, and there were 5 phones at the Verizon store with no data.....just simple to use phones. I can't believe Patrick is 12 already. But then, I still can't believe Emily just turned 21~!!! Hoping someone has TMobile experience for you.
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hi
Aug 5, 2012 6:09:13 GMT -5
Post by Emilysmom on Aug 5, 2012 6:09:13 GMT -5
WELCOME to Uno Mas, Polly! ! ! It's great to have you here.
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Post by Emilysmom on Aug 1, 2012 7:51:40 GMT -5
SO good to see you here, Steff! ! ! I'm keeping up with you on Facebook, but there are members of Uno Mas who never use Facebook and want to keep up with all of us. Sounds like both of your kids are doing amazing things!!!
Pics please!! Liv, Kyle.........and Carla!!
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Post by Emilysmom on Jul 25, 2012 6:05:28 GMT -5
Happy Birthday, Charlie! He is looking very handsome, Bob! I can't believe he is a teenager!
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Post by Emilysmom on Jul 16, 2012 6:25:30 GMT -5
Totally forgot to submit a pic this year. Will try next year! Hope to see some familiar faces on the video!
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Post by Emilysmom on Jun 19, 2012 7:23:58 GMT -5
Sue, How old is Samantha jo now? I can just tell you our experience- Emily has gone to the Down syndrome clinic each year for check ups for many years. They have never done an actual pelvic exam on her. I asked when she would need to have one and the response was "when she becomes sexually active". Emily's periods have always been very regular, and she has never had issues like cramping, clotting, or heavy periods. If that happened, I would have taken her for a pelvic exam.....but so far, so good.
We tried birth control pills twice and did not like them at all. The first time, we never did get the dosage regulated and it really messed her up.....never knew when she would have a period, heavier, etc. 2nd time, she gained weight. There are always risks of blood clots with birth control pills, so we decided to just let her handle periods once a month like everyone else. So far, it has worked.
I have no idea how to make it more fun! ! ! If you figure that out, let me know. But Emily has gone from needing lots of help with it, to trying to act like it's not really there (yuck!!) to now taking care of everything by herself and just rolling her eyes if I ask about it.
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Post by Emilysmom on Jun 19, 2012 7:15:25 GMT -5
Haven't had one in years, Sue! I would love to get together this year in August.......just not sure if it will work out. Will post up if it does.
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CPAP
Jun 17, 2012 12:38:02 GMT -5
Post by Emilysmom on Jun 17, 2012 12:38:02 GMT -5
That's wonderful, Renee'! Even better that she is doing it on her own.
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Post by Emilysmom on Jun 11, 2012 22:16:18 GMT -5
Chris, I wish I had some advice for you. I know it has to be heartbreaking for you. One of the hardest things I have dealt with related to Down syndrome has always been the fact that Emily has been unable to verbalize how she feels about things. That makes it so hard to know what could be causing health related issues and emotional issues too! If only Sarah could tell you what's going on in her mind when these episodes happen!
I will ask Laurasnowbird if she knows anyone in Michigan who might be helpful. She is a great resource.
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Post by Emilysmom on May 13, 2012 20:10:01 GMT -5
So sorry that Eric has to go through this, Dolly. Will be praying for a good outcome. Do you remember Radonna from here? I believe her son, Kaden had this same thing many years ago. She is on FB, and I'm sure she'd be happy to talk to you about it.
Susan
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Post by Emilysmom on Apr 30, 2012 19:25:00 GMT -5
Mary Grace, Will be thinking about and praying for Kathleen on the 7th. So glad she is seeing a doc who knows his stuff! Keep us posted.
Susan
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