Rhett Syndrome

From some of the info I have read says its mostly in the early years and they stop degenerating at around 8-9 and can see some improvement in the following years. Just wanting someone with knowledge and /or experience to confirm this, or amI reading it wrong. Also saw some videos with stemcell research and that showed huge improvements. so, mostly I guess I am just wondering out loud.

Thank you very much ladyjubilee TY TY TY She sent me a PM with 2 very wonderful sites. I will re post them to here, in case someone else comes looking. Didn't see any other posts on Rhett when I searched. [url=http://www.rettsyndrome.org/content/view/697/462/]rettsyndrome.org[/url] [url=http://www.rettsyndrome.org/content/blogcategory/15/972/#001]rettsyndrome.org[/url]

A couple things... I would not even assume because it lists a favorite food that a child is not tube feed. She may eat, but not enough to sustain herself, needing supplementary feeds. Also, based on what you wrote I would assume she is non-verbal but can get her point across in other ways. Our son was non-verbal when he came home, only screaming mostly... what he wanted/needed was usually PERFECTLY clear. As far as her capacity to sign, I would guess that depends but you should just ask that question. Good luck!

There was a rhett girl in my daughters disabled daycare. She was one of my favorite kids. She didn't talk but was easy to understand if that makes sense. She used a very simple talker (think 6 buttons for choices). I see that you will be a single dad. The only thing I would mention is that you should consider rather you are prepared to deal with diapers on someone with pubic hair and who has her period monthly. My hubby is the primary caregiver for my DD and I have never asked him how he felt about it but it is something I am starting to think about. I would also think long and hard about whether as a single person, a child that will require lifelong care is something that you can do. Check into daycare/after school care for disabled kids. Here, daycares can't take kids over the age of 7 and still be licensed and none of the normal afterschool programs will take my daughter (who is similarly disabled to the little girl you are describing). The programs who took older disabled kids took kids up to age 21 and the vast majority of them were not safe to be around a fragile kid who could not defend herself. The Rhett girl I knew did eat normally. She was extremely happy. She was able to walk with a very supprtive walker but mostly was pushed in a wheel chair. She did not seem to be able to purposefully propell it on her own. She was what I would call fragile (although not medically fragile). Another thing worth thinking about is that child with very low intellectual functioning is sometimes a total flippin hazard if they can walk. DD used to walk with a walker and crawl like a champ and she required tons of supervision because she really could not be taught not to do things that were dangerous or use common sense. She fell off the back of a couch at 4 am one morning after crawling downstairs and getting on the couch and pounding on the front window saying "let me out." DH and I thought it was cute and were proud of her independence until we heard the thump and the silence (no harm done, but still. . .) Just things to think about. The little girl I knew really was a lovely, lovely child. Its a disability I wouldn't hesitate to choose to parent if we thought we could handle two kids of that level of care. She will be able to return love and love you unconditionally.

I have an extensive medical background, from EMS to working in an ER, to staff at a nursing facility. I have BTDT, so to say. But, I do understand your concern. I have spent many nights wondering the same thing, and have come to the conclusion, it would be do-able. I have taught special education in elementary and middle school, so I have insight on how adventurous, can see no danger, and how fast they might can move, even if they cant walk. On, the daycare, I plan to change my work schedule to be home when she is not in school. I run my own company and do contracts for local industry in IT. Working from home isnt that hard to do with my field. I have sent my HS, havent heard back, but hope to. Thank you so much

Sounds like you have totally thought it out! I personally would follow up with a phone call a week after you sent your homestudy. Just politely ask where they are in the decision making process and when they think they might have a placement decision made. If you can get the placement person conversing with you, point out why you think it would be a great fit for both of you. Just one other thing I caught in your post, I doubt she is tube fed but its quite possible you will have to feed her as a general rule. That's how my DD is. She is 13 and has the feeding skills of more like a 2 year old. But her eating skills are pretty much normal. She can eat steak in smaller than adult sized bites and maybe on a good day she can spear the steak with a fork. On a good day she can get a spoon of pudding to her mouth but could never scoop it onto the spoon. SHe is technically non verbal but anyone who is around her for any significant amount to time can understand her speaking enough to communicate with her.

Have already looked into the vocalizer or communicator. They have an new app for the Ipad that makes it a button communicator. So hopefully that might work, even if it works, Im sure I will learn to read facial expressions and such. Thanks for the food info. It will be a learning experience for both of us. I read and learn and absorb all I can, but you never "fully learn" till its hands on. I hope I can make and keep her happy, and that she might grow and learn a little along the way. Just waiting to hear ;)

Have you heard anything Towermonkey?

Still havent heard anything :(

WEll, follow up!

Well, they finally have my Homestudy, wont make any claims to how slow someone may be, but they sent my paperwork on June 10th, amazing. so, now waiting, again :grr:

I have worked with 3 kids with Rett's sydnrome, all very different girls with very different abilities and dispositions. One tube fed, two not. One passed away at 15, one is regressing at age 19, and one was 4 when I stopped seeing her but could walk. It's a spectrum disorder, so you have the not-so-high functioning children and the totally dependent childre, and anywhere in between. The communication issue is one of being able to plan the motor action in accordance with what they think and feel. Facial expression, eye gaze, etc worked well, even occasional spontaneous words with all of them. The problem with motor planning problems is basically "I know exactly what I want to do/ say but my body won't cooperate!" so you end up with extra movements, lack of movements, or the wrong ones, which makes sign language very hard, except for basics like more or eat. Think: "I want my doll, i'm gonna think about reaching for it for 2 to 3 minutes... Oh, darn it! I hit my sippy cup over instead!" Coordination is poor, very poor. Very Ataxic (lack of smooth coordinated movement, like a drunken sailor.) For language I would hear mostly grunts or "yea" or "ah's." It is a degenerative disorder. Some can walk, some are wheel chair bound. They *can* live to 30. It's not just a lack of talking. There can also be feeding, seizure, orthopedic, digestive system problems. Adaptive equipment like the iPad is just the beginning. It's really a LOT to consider. But, I will say, 2 of the 3 girls I knew were the happiest, most beautiful girls ever.

Have you heard anything? Its maddening how long this process is!:grr:

She went to someone else:(. But I'm happy she was adopted. Still looking for my ill one :).

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