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Post by tiffany on Jan 13, 2007 21:50:48 GMT -5
HI, I HAVE NOT BEEN ON HERE VERY MUCH, SO LET ME INTRODUCE US. I AM TIFFANY. I AM MARRIED WITH 4 GREAT KIDS. KATIE 11, CARTER 9, LEAH 6(DS), AND ZACK 1. WE LIVE IN UTAH. LEAH HAS BROUGHT ALOT OF JOY TO OUR FAMILY! WE THINK EVERY FAMILY WOULD BENEFIT FROM HAVING A SPECIAL CHILD IN THEIR FAMILY!! SOME TIMES ARE HARDER THAN OTHERS, BUT WE MAKE IT SOMEHOW! LEAH IS IN UEI HALF DAY AND REGULAR KINDERGARTEN THE OTHER HALF. SHE LOVES SCHOOL AND HAS LEARNED OVER 100 SIGNS SINCE SCHOOL STARTED IN SEPT. WE ARE STILL TRYING TO POTTY TRAIN!! ANY INSIGHT ON THIS TOPIC WOULD BE GREATLY APPRECIATED! WE ARE JUST LIVING AND LOVING THE BEST WE CAN! IT IS SO FUN READING ABOUT ALL OF YOU! THANKS FOR SHARING YOUR KNOWLEDGE WITH ME! TIFFANY
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Post by MaggiesMom on Jan 15, 2007 23:42:06 GMT -5
Hello all! Do you know how long it's been since I've even been to UNMOAS? I'm sure it's been a year at least! Bad, bad girl! Anyway...I miss you all! Maggie is going to be 6 Valentine's Day!!! I so can't believe my baby is that big. Matthew, Maggie's big brother, just turned 13 Sunday. I'm getting old! Maggie is doing well. I'm homeschooling both kids and we go out for Maggie's private therapy once a week. I have to say I'm not happy with Maggie's progress in anything, but that's the main reason we chose to homeschool and do private therapy. We spent the entire year of 2006 trying to see if Maggie was eligable for a cochlear implant, or two. She was diagnosed with auditory neuropathy last spring. After MRIs and dozens of tests, they found that her left ear is a total loss. It doesn't even have a viable nerve. So, no cochlear implant, her hearing aids don't help much, and thus not much speech. She can still only say a few words and signs about 20. Unfortunately, she doesn't "attend" to task well and doesn't want to pay attention when we try to get her to sign either. She still has thryoid, heart, asthma, feeding, and stomach issues. Lots of therapies, doctors and such. She had tubes put in again this year. She constantly has fluid...even though the doctor swears he can't see it, she flunks her tympanograms. Go figure! Maggie is a joy to be around. She sings ( in Maggie language) dances and plays all day. She still loves Barney and Sesame Street. Her new love is Spot! Saved those from Matthew...10 years ago! Matthew plays AAU baseball, is taking 9th grade classes although he should be in the 7th grade, and he started playing bass guitar in the youth praise band. He keeps me busy! I'm not enjoying teaching algebra this year, but I'm slowly remembering all that "stuff". Tim (dh) is still into VWs and restoring them in our garage. He's great with Maggie and she's her Daddy's girl. I've had a hard year. Depression hit about the time we found out Maggie was not going to hear any better than she does now. It just really devastated me. Everything else, I could deal with. But I so want her to hear, speak and read. It's heart breaking. I'm better now and trying to find a new direction. I'm investigating Cued Speech. There is even a Down's Cue website. Anyone do cued speech here? I think I'll post a separate thread on that later. I plan to take Maggie to a new private school this summer and see how she does. I hear great things about them...although we'd have to travel an hour each way. I promise to check back in more often. I was thrilled to read about everyone's families. Great idea! Take care. Robin M - Maggie's mom
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Post by Kristi on Jan 17, 2007 13:02:15 GMT -5
Hey Everyone! THought I would do an update, has been so long since I have been on. My internet went off because of lack of funds at time, then went to pay it and lightening got my computer. We have just moved and didn't have any insurance.. . Hayli has decided I could use hers today...lol. For all that don't know, I am Kristi mom to Hayli 14, Cody 12 (DS), Bobbie Jo 9, and Kylie 7, and wife to Ron. We are doing great besides not having a computer or money...lol. Ron has not been working since June. He has went through some kind of depression and thinks everyone is out to get him. He seems to be getting better but still isn't working. There was alot of stress over this but we have worked through it. Cody is doing great! He is reading now! Since we moved he went to a new school district and it is great. He loves it! He sure does miss Chase and Steven! He still asks when we are going to Ohio. Hayli is a freshmen in HighSchool and is on the dance team. She is doing great also. Bobbie Jo is wanting to see everyone on her birthday this year. THat is all she has been talking about this month, and we still have 8 months to go! Kylie was just talking about sending Zach a letter, even wrote a love letter to send him...lol. It has been taped up by the door for a week so I wouldn't forget to send it...so Robin let Zach know Kylie is thinking about him. Plus, know that you are in our thoughts and prayers, so sorry you are going through this. Kylie has been diagnosed with ODD..so anyone with any info about this.....All I know that she is like a time bomb, never know what she is going to come home like, happy or mad. If we don't give her her way she cries, if we end up given in she cries against it. The medicine she is on is making her gain weight, I am about to tell them to take her off of it and just live with it. She just seems so unhappy. So if anyone has any suggestions let me know. Hope to be back...nice to read all the updates! Take Care. Kristi
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Post by hannahsmomuk on Jan 18, 2007 19:26:01 GMT -5
This is a great idea, as I don't post as often as I like ( I do read here though )
We have had a busy year here
Hannah is now 4 years old and our feet haven't touched the ground here since she appeared as an extra in Eastenders ( major UK soap )
We had a wonderful day and met with some of the actors ( just incase no one knew here in the UK a major soap is running the story of a baby has been born with DS to 2 main characters and they are following the ups and downs of it all )
Hannah took part in a support group and we all cheered when she appeared on the screen. It was great fun to shoot and its raised the DS profile here in the UK quite a bit
Meanwhile at school Hannah is now full time and she is now saying a couple of words which is great as she has got a dual diagnosis ( Autism and DS ) and is doing really well with signing and trying to communicate. We have managed to organise some extra speech therapy lessons for her, which has really helped her
She loves school and all the kids love her and we get bombarded as we walk through the school gates with all the kids fighting to hold her hand to walk into class with her
Meanwhile Hannah's sisters are growing fast. It doesn't seem 2 minutes since I was telling everyone I was announcing I had just given birth and now she is 9mths old
thanks for reading and thanks for all the updates to everyone else and welcome to any new people too
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Post by steffipoo on Jan 27, 2007 10:34:55 GMT -5
Oh hannahs mum your girls are beeeaUtiful. Love those personalities that shine thru the photos.. hee hee made me smile. Hi steff here.Just coastin thru jan here. Olivia is doing so much better now that she is back on a schedule.thank the Lord cause I was just this close to losin it. Girl knows when to stop phew. Hmmm well my boy Kyle is great too he is almost going to jr. high. wow ... He is so smart and now learning about friends and who is really your friend and who isn't. It's painful to see your kid get hurt but glad he sees it. ya know? I have been busy working with the doj on my bro's case. Guess I opened up a can of worms. Just never wanna think he died in vain. I just can't get it outta my mind so thought I should put this mind to use rather than idle thoughts ya know? Thats it gotta jet.((HUGS))) Steff
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Post by steffipoo on Jan 27, 2007 20:22:34 GMT -5
OMG OMG. do u all know I haven't had mail for 3 weeks since our box was broken into. well landlord still hasn't fixed it so went to post office to get mail. Can't get it they are returning all to sender so if ya sent a card or something sorry if I am rude and haven't answered. I hafta go apologize to the rest of the world. UGGGG off to fix the mailbox in the rain grr to my landlord. steff
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Post by meagain on Feb 13, 2007 19:37:00 GMT -5
Hey, I am Kathleen mom to Rhienne. Been QUITE a while since I have posted here. Just gave a short update in other forum, but will expand here. Rhienne is 11 years old and quite a character. Does a fair job of getting his needs understood verbally, but speech is quite an issue. Lives with his brother Davontae, also 11 (they are 10 months apart), Anthony, 19; Naomi, 15; Eliana, 12; Evan, 3; So'Jere, 5 months. Loves basketball and food. Not necessarily in that order!! Is due to have yet another sleep study because of ongoing obstructive apnea issues, has had GERD from the day he was born - and is on meds twice a day because of it, has ulcers in his esophagus that are very slowly healing. Isn't feeling well today - I told him to go in his room and find something to play with. He replied, "don't wanna play. Go to bed." So he did. NOT a good sign. Still can't stand the brushing teeth thing, doesn't want his hair brushed, much less cut. Doesn't want to do much of anything for himself, so showering and putting clothes on is a war every morning. Great sense of humor, unless you are laughing at HIM, to which he will say, "what's so funny?" Or, "ha ha ha NOTHING." All in all, quite a handful, but wouldn't have missed this train for the world.
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