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Post by Claire on Nov 16, 2006 23:56:49 GMT -5
I already posted a thread on what was happening this week but other the that everything seems to be falling into place. 2 new things that Adam has started doing is when he gets his juice before going to bed at night he now sits at the table and babbles is day to us. Some we can't understand of course but at least he is starting to initiate communication. Another thing that he figured out is how to stall for time for bed time and bathroom time. He'll keep saying not done for like 20 minutes. He has also started playing little pranks on us like hiding a banana under our couch cushion. When I tried to sit on the sofa he came running and said " No sitting" He then pulled up the cushion, started to laugh and said " Good prank" LOL' He is also hiding things in the classroom and they have a hard time finding them if he does not cooperate.
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Post by justinsmom on Nov 17, 2006 11:13:16 GMT -5
Ok Justin now 6 is doing awesome this year (gotta love those meds), he is actually the leader of the class. He no longer has a mild loss in his left ear, his speech is taking off, he has graduated from the ped cardio to once every 2 years YEAHHHHHHHHHH!!!!! yes the VSD is still there but closing slowly but surely. He's 53 lbs and 48 inches tall. Parent Teacher Conferences were great finally this year instead of sitting there listening about how he helps the others eat, not sitting still, taking toys from others, not listening and taking off we got to hear how much they love him, how he's helping the other kids, how much he's changed from the previous years geeeesh it was only suppose to last 10 minutes and we were in there for 45 minutes LOL. The boy can hit a baseball even without the t ball stand and man look out when he throws it lol too bad it wasn't football maybe he could help out those Lions' LOL. Big sis Alyssa was just diagnosed with sleep apnea so we are awaiting her cpap uggggggggh. Her asthma is out of control so now she is classified as moderate to severe and now qualified for childrens special health insurance. She was upset cause it kept her from playing basketball, volleyball and marching band. We talked to the band teacher and he's letting her try again tonight is her first parade brrrrrrrrr. She has managed to keep her GPA up even missing alot of school, a 3.8 we are so proud. Little sis Ashley well Ashley is still Ashley 9 yrs old and still only 56 lbs, playing floor hockey although when she stands sideways we loose her behind the hockey stick , she is getting back into gymnastics and just adores her little bro ( ok so he can pick her and move her out of the way). Cousin Brandon is doing great still playing football and has managed to keep his grades up as well even with all the conditioning, weight training and practices he ended up with a 3.0 big stuff considering he was at a 1.0 when he came to live with us 2 years ago. I think that just about covers it for now. Hugs everyone
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Post by brewersal on Nov 17, 2006 15:18:04 GMT -5
Ok not sure how much I've shared already but now back out of hospital and Charlie on the mend from latest pneumonia bout! Big news.......HE IS SITTING UP! not for long admittedly but he really is nearly there - so proud of him! Hearing is nuch better than previously thought! ASD is likely to close by itself! So mostly great news at the moment. Girls are having a period of 'calm' at the mo. No hospital admissions for over 2 months and no ventilation/ICU for much longer! They are both attending fabulous school for children with severe learning disabilities and have a new teacher who they love as much as the last one! Doing really well. Paul (husband) is as gorgeous as ever! Just been to your neck of the woods (relatively) - Las Vegas - for a friends wedding. Decided to renew our vows as a show of solidarity! Despite all the ups and 'downs', 'fits' and starts we are still so glad to be with each other and our gorgeous bunch! Lovely to share all your stories and have so many 'friends' overseas. Love to you all and your families! Sally X
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Post by elenasmom on Nov 18, 2006 15:30:30 GMT -5
Hi all, I'm so bad about posting, but have been keeping up. It's good to read up on everyone all at once. Elena is 6 now and in her 2nd year of kindergarten. She's doing so great, it's hard to believe. She's completely integrated in her class and only gets pulled out for therapy. I have such a thing about speech that she gets private speech therapy once a week. She's doing really well with her speech, she is understandable most of the time, except when she gets excited and starts talking too fast. Her handwriting is improving, but it's still real hard for her. But she tries really hard and that's all we can ask. Academically, she can count to 20, recognizes all the numbers and letters and knows what sounds the letters make. The last step to reading will be pulling those sounds together. So we're really proud of her.
Mikie is 8 and in a combined 3rd and 4th grade class, as well as enrichment class. He had a hard time socially last year because he's intellectually a little more advanced than his classmates, but emotionally less mature. It makes for some difficult times interacting with his friends. But this year, he seems to be doing alot better and we're really proud of him for working on this issue.
Mike and I have been married 11 years today, and are doing fine. He works full-time for the state of NM and I work part-time. This is hard financially, but we do it so I can be home with the kids when they're not in school. He's a great dad and husband, we'd be lost without him. I've been on Jenny Craig since April and have lost 23 pounds, so I'm proud of that. Now, I just have 45 more to go.
That's it for us. I'll try to be better about posting. Y'all let me know if you ever get to Santa Fe. Gay
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Post by Deannalee on Nov 18, 2006 20:33:36 GMT -5
Well....we are status quo, I guess. Justin is 3 1/2 now. He just went to ENT Monday and both of his tubes have fallen out, but Dr says he doesn't need them in unless he has another ear infection or 2. He goes to see pulmonary on Monday. He finally has his w/c that we ordered a year and a half ago. He is still 100% tube fed, still doesn't walk, and still doesn't talk. He has some behavioral issues....head banging and hitting.....because of his lack of communication. He is in special ed preschool right now. We are also trying to do time outs with him when he throws his toys everywhere.....it is getting destructive to the house and he hits people with the toys inadvertantly.
Jarod is still Jarod. He is in kindergarten with an IEP for his ODD/ADHD. He still takes risperdal and clonidine. We started the new Daytrana patch and that has been a Godsend since he always refused his metadate.
Jacob is in 5th grade and doing well as long as he turns his homework in......big issue for him at times.
Alyssa is in 8th grade and doing well. The middle schoolers here are very nasty and don't appreciate our lack of money. If you don't wear Abercrombie, Wet Seal, Hollister, etc.....you are so uncool and unpopular. Then add to that the fact that she has a surviving twin brother with DS and a brother with behavior problems......we are so uncool and weird that she will never be popular!!!! I have to say I have always been uncool and an ugly duckling, so I can empathize with her.
If you guys could say some prayers for us....we would appreciate it. As always, since the twins were born, finances have been horrible.....and again we are faced with losing our home. Being a single mom with only one meager income sucks!!!!!!!!!! Just pray that everything turns out ok for us. I don't want to lose this home.
That's it for us. I hope everyone has a great Thanksgiving and Christmas!!!!!
Deanna
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Post by tnhach on Nov 18, 2006 20:56:37 GMT -5
Wow I haven't been to this site in like 4 years, but I remember how much it helped me deal the first few months. Azariah just tuned 6!!! I can't believe it. After a sad attempt to homeschool him for kindergarten last year(he hated mom being his teacher figure) we decided to send him to public school. He is being mainstreamed, has his own aid, 2 teachers, plus another boy with DS and his aid in the class. WOW!!Only 15 kids total in the class. They even have him going 1/2 days and after Thanksgiving are going to slowly ease him into full days by having him stay later once a week and then slowly add more full days. He really seems to love school. He has started to talk a whole lot more since he's been at school, and I think its really working out. and I must admit I really need a break. My son is totally crazy...I love him to pieces but he is such a handfull!! I have to know what he's doing all the time, can't leave him out of my sight for one second. These are the things he ATTEMPTS to do while he is home.... climb everything, get on the kitchen counter, pull things off and throw them, will try to cook, dump all my condiments into one bowl, to use knives, start fires and load our woodstove, chop wood, run away, unlock the door, unlock our gate or jump the fence, run into the road, hit his sister, throw things at his sister, pull on the dogs tail and ears, ruin my knitting, pull all the leaves off my house plants, throw all the toothbrushes in the potty....and this was all just today!!!He is sooo fast too. When I get him to calm down and focus on a book or coloring, he is really sweet and calm, and I can get a few things done around the house..but him going to school has helped me SO much. We live out in the country with no family, few friends, and no babysitters. Anyway, his little sister Iris (3) is so sweet with her brother, and also helps me watch him and make sure he's safe. She misses him when he's at school but enjoys her 1 on 1 time with me. We have gotten dairy goats and sheep and both kids love to hang out in the barn, chase the chickens around and help me feed the animals. At least I know I am doing one thing right by exposing my kids to the country life and nature. We have 30 acres in the country and they love to be outside. My husband has figured out how to work from home so he is around the family a lot. Boy does Azariah want to be just like his dad. Well, its so nice to be back here and to post again. What a wonderful place this is. Peace....Tavia
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Post by gloriaelias on Nov 20, 2006 3:21:21 GMT -5
Hi everyone, I seldomly post but habitually visit. Great Thread.
Well, Jacob is 4 years old. He also has epilepsy and asthma. He just started crawling all over the place in July and is now pulling to stand and climbing on couches, chairs, laps, etc.... He has really progressed since June of this year. He has had 4 sets of tubes. In June, he had his T/A's removed and another set of tubes put in. He also started wearing glasses around the same time period. Since then, (knock on wood), he has not gotten sick or come down with an unexpected fever. Since T/A removal, he has started eating ALL kinds of different foods. He now eats sandwhiches, hamburgers, cookies, cheese and so on. Before, all he would eat was mashed food. The rest would make him gag or choke. He has also gained about 6 pounds since then. He has ST, OT, PT at school and rides horses as a form of hippotherapy. He loves the horse riding. It's kind of terrifying for me, but he loves it and the people are great. It has been a good year so far. This is the best year for Jacob as far as health issues and accomplishments go. I'm excited to see what's next. His favorite thing is watching "Love and Learning" on his own tv car. He crawls to it and touches the screen with his nose and expects it to turn on, when it doesn't he puts his hands up as if trying to say "Well?" LOL. It is sooo funny to watch, then when I ask him if he wants it on, he touches the screen with his nose again, I turn it on and he claps and laughs. Life's been good this year. We are in the process of getting his transportable stroller. He is getting pretty heavy to carry on the bus. Your responses on this topic a while back really helped my anxieties about the strollers, so thanks.
His sister, Vanessa is 7 years old. She is truly an awesome sister and daughter. She plays soccer, basketball, sings in the church choir, and made the Principals List this last quarter. She loves to play with her brother and is VERY protective of him. She loves to wrestle with Jacob and Jacob just laughs like a bowl full of jelly.
My husband is finishing school, hopefully in March and is doing well I might add.
We are also looking forward to our trip to DisneyLand during the christmas break. Vanessa and I are totally excited and are hoping that after we get there, Jacob and dad will be to. lol
Well that's about it out here in CA
Happy Thanksgiving Everyone.
Gloria
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Post by kerri on Nov 21, 2006 17:16:07 GMT -5
I picked a good time to come back. Its so great to see how everyone is doing, I shouldn't have stayed away so long.
Yosh is 4 and in his 2nd year of pre-k. He loves school and can't wait to leave every morning. He gets ST, OT, PT, and feeding therapy in school and will soon get music therapy. He has a 1 on 1 nurse working on feeding, but will soon switch to an aide to work on everything. He is playing with the other kids and participating in all the lessons instead of off by himself and kids fight to sit with him in circle. There's even one little boy who acts like his big brother. The nurse reported that Yosh is no longer the baby of the group but part of it. This year he really has changed. So many things have clicked for him.
Yosh says about 30 words, but still mostly signs. He can not only tell us if he wants book or tv, but which DVD to put on. I know people think that tv isn't good for kids, but when Yosh watches, he gets all involved. He signs or sings along, or we dance together. He takes out his drum and plays along matching the rhythm of the music. Trucks are now rolled across the floor instead of flung and he takes turns playing basketball. Reading together is still a favorite activity and the Sandra Boynton books make him hysterical. He's starting to go up and down stairs by himself and when I say 1,2 Yosh says 3.
Just in the last week he has started saying Mommy and Abba (Hebrew for daddy) meaningfully. He calls out Abba when I try to make him do something he doesn't want.
We took our first trip to Sesame place last month and he had an okay time. He doesn't like rides but enjoyed the sights. We're planning to go to Disney next year and would love to hear about what your kids enjoyed there when they were 5.
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Post by caceresleah on Nov 22, 2006 9:55:42 GMT -5
Hi, I am Leah and I have not been to this site in several years. My computer broke and I was unable to obtain a new one. I am single and 43 with two great kids. Emma is my babe with ds and she is also hard of hearing. She is attending preschool at the IN School for the Deaf. She has been healthy for quite some time now She is five years old, she is able to sign but not like her peers, she is delayed with her signing. I can understand as lot of her wants and needs. She is not speaking, only hi, by, mom... She is a ball of energy, wanting someones attention 24/7. Pooh and Barney are her favorites. Nathan is my son who is 18. He started at the University of Indianapolis this year. (Yeah, I thought it would never come!) He also works about 30-35 hours a week at an ice rink. In the summer he lifeguards at the same facility. Over the past five years he has become closer to Emma which I LOVE. He is quite a guy and has decided to become a teacher and teach in inner-city schools to give back some. (How lucky am I???)
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Post by Kristin on Nov 22, 2006 22:24:39 GMT -5
I'm really enjoying this thread, too.
Clarice, who turned 8 last month, is in a special day class (self-contained). For her it is the best setting as she is easily distracted by others. She is in 3rd grade, and goes to the school's daycare after school each day. I'm a working mom, so it is a necessity, but it also has been a great way for her to socialize with the rest of the school. She's made some great friends there. Clarice is just beginning to read, which is really exciting for both of us. She is the queen of food intolerances...no casein, eggs, gluten, or 25 other foods like celery, lettuce, nuts, pumpkin,... Needless to say, I do a lot of baking from scratch. Healthwise, she's having a pretty good year. No bronchitis or ear infections yet! She vaults on a horse in the adaptive horseback riding program. It's really neat to see her in action!
Marcy, is Clarice's fiery almost 4 year old sister. Her birthday is this Monday. We're in the throws of putting together a birthday party for a dozen pre-schoolers. She's bright and we have to stop her from giving Clarice the answers to her homework! The girls get along famously, which has been really great.
Hubby runs two businesses out of our home and teaches one college night class. The nice thing is that he can often set his own hours and take the kids to doctor appointments, etc. during the day.
I teach high school biology. Ironically, my degree is in genetics. I'm currently working on my master's degree in biology which is also an interesting journey after having been out of college for many years. I've been posting off and on on unomas for several years...I really like the attitudes of everyone. It's been a wealth of information, and a great place to voice joys, concerns, and just vent when needed! Thanks everyone! Kristin
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Post by chasesmom on Nov 23, 2006 17:56:06 GMT -5
I am at my sister's house this thanksgiving having been ordered to send the boys with their father for four days and I am feeling very devastated without them and......well, so maybe this is a good time to do a update. Chase has turned 14 and become a young man completely with voice change, body hair, facial hair and those ever so wonderful raging hormones that come with it, all of this happening in the middle of my finding out the man of my dreams, my beloved prince charming who I wanted nothing more from than to grow old by his side, my hero, my everything was cheating on me for at least the last two years, and the final affair ended up beinf our next door neighbor, my friend, Zacharys best friend's mom. Without going into any more ugly dirt then I have to, let me say he left us penniless, carless and heartbroken. He is happily installed next door to her about 15 miles away from me, fighting me in court for everything he hasnt already stolen, including my children, but I am sure he will not get them, I have far too much faith in the Lord and I am confident that friend of the court looks down upon adultery. ( I sound so brave as I tremble in my chair and cry my self to sleep everynight on the nights I manage to close my eyes) The boys are doing as well as can be expected. It has been so hard for Chase as he is nt able to verbalize his words as well as Zach and I but he has learned over the last several months to get his feelings out. He has become very caring and compassionate with me, we cry together and share when we are sad and missing Dad and when we are very angry with Dad and his girlfriend who Chase calls witch...and I SWEAR he came up with that on his own, I would have taught him a better word then that!!!!!! He is using his words much better but we have to remind him constantly. It is exhausting to be sole custodian of the boys, and I am thankful I have an aide to help watch over him but it seems as if I get home, and have to cook, do dishes, laundry, clean, bathes, homework and time for beds, opps, that is how it is, LOL, no it is okay, I love my boys, they are my life, I want it no other way, I am just realizing how hard it is with no help at all, it is so scary and then when I realize I am doing it...I get a panic attack, that actual comes when the bills are due and I have to pay those. Zach.....he I guess is having it worse then Chase in his own way. He lost his friend, he lost the trust he had in his Dad, he lost his family, because the family he knew is gone and we have a different one and he has had to face the fact that life is not what he thought it was at the tender age of 7. I mean who wants to catch dad cheating on mommy with your best friends mommy and hear daddy say he dont love mommy anymore? Hell, who should know at the age of 7 what cheating is? Opps I am sorry, that bitter pilll slipped out a bit again.Zach is in counseling, and she has diagnosed him as ADD with a bit of ADHD thrown in and she thinks it showed up so much because of the stress he is under. This is not a nice divorce, there is police involved weekly and court battles and him showing up beating on the door, just lots of terror and stress for the boys and I. Okay, no more bad stuff I swear...... only good. My job and the child support is not enough to support us so I am going to go back to school but it has to be part time because of the boys, they need me desperately right now and I them, so I am starting with the basics while deciding between sonogramist or my heart- social work, I just need to be able to support myself and the boys and I know medical is probably where I should be monetarily but I so love helping people with disbi.lities. Chase has a new program and he is ROCKIN!!!!!!!!No behaviors, no attacking anyone, no messes in the pants no tearing up the classroom, he has his old aide from Carrollton back at the program he is at in a different building where he goes, there is only three kids, four aides and a teacher and get this the TEACHER TEACHES!!!! YES!!!!The teacher does the teaching and he loves my son!!!!!And he is learning stuff he is going to actually use in his life time, how is that for an amazing fact. And to think, it only took me 11 years of fighting to get here for him and yes, I remind the special ed superintendent of that all the time, how sad all these years wasted. Well, it fixed and I have to look forward now right? In all aspects of my life, Chase's life and Zach's life and with that, I will close this long novel, say I wish you all a blessed Thanksgiving and if you are lucky enough to have your babes near you tonight please give them all a big hug from me as I sit here and miss mine terrible. I think of you all so much and miss you guys!!!!!!! I cant wait to be able to afford to get back online!!!! Love to you all Robin
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Post by updowns on Nov 23, 2006 19:22:57 GMT -5
I know I have been really bad about posting lately, last six months even and probably before that - sorry guys but I do check in and try to keep up with everyone.
I have been feeling pretty low, finding it difficult to cope, probably depressed and I have been trying desperately to pull myself out of my depression and no there's nothing major going on - it's just me and I feel so ashamed when I read about how much so many of you have to cope with. So no promises but I WILL try to post more.
Sarah is just getting heavier and heavier. She has always had a weight problem but in the last year it has become SO bad. I actually think her eating is an obsession cos she certainly can't be hungry and it is just a constant battle which wears me down. She has been on the pill almost a year now and I guess that doesn't help but her periods were so horrendous we had no choice and get this - her weight is probably at the root of her period problems - just makes me want to cry. She has recently seen a gynae who says once her bp remains ok she can stay on the pill until she is 18 and then we can opt for the mirena coil. Also seen an endocrinologist who thinks her weight is due to overeating and underexercising (and excerise is such an effort for her cos of her weight - Catch 22). Anyway endo wanted to run some blood tests, one where she had to take a cortisol suppressant at midnight and have bloods done at 9am. Well, kept her up until midnight, got up at 6.30 so that we could get to the hospital on time and she just freaked when she realised what was happening, wouldn't even sit in the chair. In the end the phlebotomist said there was no point as she was so stressed it would affect the result of the cortisol test. Bummer!!!! Don't know what we are going to do.
She had a chest infection last week - been years since I've seen her so sick, but almost fully recovered now.
Simon has started working - can't believe my firstborn is now a man! And Craig, my baby, is 9 - so hard to believe, they grow up so fast. When he's not being tormented by his big bro he is busy fighting with and tormenting Sarah, but dare anyone else try to upset her! He told me recently that he and his pals in school had been talking about swimming etc. and one child said she went for lessons at the "handicapped school" (Sarah goes to special school and it was her school the child was referring to) and Craig said "Don't you EVER say that in front of my sister - I was so proud of him.
I have taken up swimming lessons myself (trying to get myself out of my flunk) and I LOVE it. I was able to "just about" swim and wanted excerise but hate the thought of the gym, walking is kinda boring so decided on swimming but had to improve my technique to make it work. I go to lessons twice a week and I look forward to them SO much and I am improving all the time so that's good.
Well think that's about it - 0h how could I forget, Dave (DH) got Sarah's dose and has been SUCH a baby - driving me nuts!
Stella
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Post by jennifer2005 on Nov 24, 2006 19:47:14 GMT -5
Andrew is 14 months old. He is finally sitting up all by himself!! YEAH!! He is really trying to crawl!! OH how all those hours of PT and OT have accomplished! Since his heart surgery his health has been great! He is getting Synegists shot monthly. He is however deaf and we have a ST and a deaf teacher from the school district come in 2ce a week to teach him. All of my other troopers are doing great. I hope everyone is fine. I have been offered another high paying job on the other side of the country but I really dont know what to do! Dilemmas! Kids, school moving etc etc.....any advice??? Good nite Happy rest of Turkey weekend.
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Post by steffipoo on Nov 24, 2006 19:54:58 GMT -5
stella the storyteller... omg what r we gonna do with our girl? Olivia and sarah are twins in the weight dept.we hafta talk. K?? HUGS Steff come 2 chat 2night
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Post by steffipoo on Nov 24, 2006 19:56:22 GMT -5
robin lmaorotflol witch me thinx of some better names too... lol kinda subliminal of chase eh lolc u 2 night
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