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Uno Mas! ArchivesApril 2004 Message Board
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| Name: | MB Email: | ||
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Sent you a message. I read you are having trouble posting on the Bulletin Board. Please e-mail me if necessary. Thanks! MB | ||
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| Name: | kelly Email: | ||
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| Name: | Kelly Email: | ||
| Child: | Quinn-19 months | ||
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Welcome to Marci and Bethany!! I am more or a lurker than a poster, but I feel the need to let all of you know that you are all helping hands to me. I check on here for new information all of the time and support. On those days that I am feeling overwhelmed, there is always a message here that makes me smile. Marci-I can actually feel your emotions. That is the beauty of this site-so many people who have actually been down the road before you. I can tell you that I have fallen more in love with Quinn as each day passes. I can also tell you that the road can be overwhelming, but I can let you know that..."When you come to the edge of all the light you know. Faith is knowing that one of two things can happen: you will fine something solid to stand on or you will be taught how to fly." All of our DS kids are our wings. Thank you all again. I am going to start being more of an active participant!!! Kelly | ||
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| Name: | Susan | ||
| Child: | Emily | ||
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~ I hope to be back tomorrow to catch up with all the posts. Susan | ||
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| Name: | Robin Email: | ||
| Child: | Chase/11 | ||
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Marci you tugged on my heart. My baby boy Tyler, died on December 23 also. HUGS to you!!! Advice.... LOLOL, try it all is what I say ..oh and you cant have too many toys to stimulate the babies, no matter what your families say!!! :-D (Chase too had a musical mirror that was his favorite forever. I think that is why he crawled so early, I put it just out of his reach leaning against the couch and made him to to get to it:-) Cute story but this time it is about youngest boy number 4 Zach... he got in trouble with the neighbor for accidently tipping over a bird nest trying to see the eggs. They al broke and he was crushed but then even more so because they yelled at him so I was sitting on the front porch talking to him about why we shouldnt touch bird nests, I mean he is only five, he didnt know any better. So I asked him if he understood and he said with his head down thinking hard... I dont know mom, I have a little bit of Down Syndrome you know. I said "What????" and he said it again! I said wrong bucko, that would be your brother, you have no disability and you darn well know it and he looked at me and grinned! I think he is over hearing Dave and I when we discuss issues with the doctors about Chase's behaviors!!!!! Little stinker thought DS keeps you out of trouble? Ha! Not a chance, LOLOL!!! OK.... Susan, will you look at Em's IEP and see what the goals are listed under the swimming or PT?? You gave me a few I hope will help but when I said Chase wil drown, he needs to learn safety skills, the special ed director said it is not up to them to teach him to swim, it is NOT a educational issue, grrrr, sigghhh, and now we have a meeting scheduled for May 13 to get this settled and the building principle from that school is going to be there along with the swimming instructor, good grief, any one want to come fight my batles for me? I am feeling weak these days and tired, just plain tired. hugs and lots of love to everyone, Robin | ||
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| Name: | Barb Email: | ||
| Child: | Alison - 13 months | ||
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Wow, it feels like I haven't been here in forever! Between running around with the girls and problems with the computer, I have ended up with a whole lot of catching up to do!!! Welcome and congratulations to all our new friends!!! Barb: Some of the best things I received as gifts were things that others have mentioned: the good old Boppy pillow, the play mat with toy arches over them, LOTS and LOTS of bibs and burpcloths ( Alison was a champion spitter-upper as a little bitty baby!!!), the jingly toys that go on the baby's ankles and wrists, mirrors, cause and effect toys that didn't require a lot of pressure to activate them - two that come to mind are the LeapFrog drum and the good old fashioned Fisher-Price piano ( 2 of Alison's favorites ) and another one that she seemed to really enjoy as a very small baby was the Fisher Price aquarium thing for the side of the crib - it has very soothing water-bubble sounds, soft lights, and a lullaby that seemed to play for a very long time. Alison was able to activate the aquarium by herself at about 4 - 6 wks old with her hand and then shortly afterwards with her foot! ROBIN: Glad to hear that Dave found work but so very sorry that it had to be out of state! Just take things one day at time! I know you can do this!!! SUSAN & SUZI: Prayer going out that the kiddos get great news at their appointments tomorrow! Let us know how things go, okay? STEFF: You can send Liv to play at my house ANYTIME!!! Boy, would my girls love it! Not to mention our neighbor the Bonster Monster ( I know terrible nick-name but that's what her parents call her!!!) who is 8 yrs old and also has DS! Now, we just have to figure out a really good short cut between LA and Buffalo! LOL You were talking with Jackie about washing the nebulizer tubing and mask and Liv's face and brushing and rinsing after a treatment.... let me tell you about something I saw first hand at work a few years ago..... for those of you who are squimish DON"T READ ANY FURTHER!!!! This is pretty gross!!!! ...... I got called down to the ER to draw bloods on this little kid maybe 5 or 6 years old. He was there because of a fungus infection in his mouth and throat because Mom never had him rinse or brush after neb treatments! The infection was so bad that the inside of his cheeks were swollen and bleeding, his tongue was so swollen and furry ( yup, furry looking because of the fungus growing on his tongue! YUK!!!) he couldn't close his little mouth!!! He ended up being transfered to Childrens Hospital and we later heard that he ended up having to go on a vent because his throat started swelling because of the infection and he was having real difficulty breathing! All of this could have been avoided if Mom had bothered to have this poor little guy brush his teeth and rinse his mouth!!! So I can't stress enough how important that step is!!! Okay, let me hop back off my little soapbox here. LOL CONNIE: Sorry to hear about your house!!! Thank goodness you are all safe! Trisha: Hope your Dad is being treat MUCH, MUCH better at the nursing home! It just makes me sick to hear about so called healthcare professionals behaving that way! It's people like that who give the rest of us a bad name. GGGRRRRRR!!!! JENN: Prayers for you, Darin, and the kids. This has to be so hard for everybody. Okay, the bewitching hour is nearly upon me here, and I thinks I must be getting some beauty sleep or I will truely be a witch tomorrow! Hugs, Barb | ||
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| Name: | Jackie Email: | ||
| Child: | Justin | ||
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| Name: | Jackie Email: | ||
| Child: | Justin | ||
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Marcy the books are: Gross Motor Skills in Children With Down Syndrome: A Guide for Parents and Professionals by Patricia Winders and Fine Motor Skills in Children With Down Syndrome: A Guide for Parents and Professionals (Topics in Down Syndrome) by Maryanne Bruni. As for us Justin has two older sisters' Ashley 6 and Alyssa 11, they are both great with him although Ashley is more of the mother hen when it comes to her brother;. As for finding the time to spend with the older two, hmmmmmm lets' see we really haven't had an issue with that. We spend time with all of them and some one on one, usually when Justin is sleeping or taking a nap, and when the other is taking their hour long bath to get out of doing homework;)but have to say Justin knows when to get private mommy time, it's usually around midnight when everyone else is asleep including me:) We do use sign language with Justin and yes he is in school we just happened to have pulled him out of the old one and into a new which is waaaaaaaaaaay better. He is attending an Elementary school which is based soley on cognitively impaired children and Academically Advanced children and the program is GREAT!!!!!! As for playing with children without disabilities that was one of the issues why we changed schools, he was in a classroom with other children that didn't talk, hmmmmmmm how was he going to learn to talk when no one else did. When Justin was a wee one I use to watch my sisters 5 kids while she worked and I really believe that made the difference he had his 2 sisters and 5 cousins, so basically there was no way he was going to miss out on anything they were doing, of course the dog helped out as far as his gross motor skills;) really strengthened the upper body when Justin would forget to let go of the dogs toy:)but he was bound and determined to follow her around the house and that he did who knew one could get around so fast doing the commando crawl. | ||
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| Name: | Karen Email: | ||
| Child: | Mikah | ||
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| Name: | Annie S | ||
| Child: | Sonny | ||
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| Name: | Marcy Email: | ||
| Child: | Bethany | ||
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Just a few more questions (and answers to yours, Pat). A couple of you guys mentioned books on gross and fine motor skills . . . any in particular you would suggest? Also, Pat mentioned there are "get togethers" where do those take place? We live in Buffalo, New York. (There is also a DS parent support group of Western NY - I have been hesitant to contact them, but b/c of my experience here, I think I just might do that tomorrow). In response to Pat's question: Bethany is an only child - last year (November 29 2002) we had a little boy (James). He was born with a heart defect. We thought that with 3 successive surgeries he'd be fine. We lost him 3 and 1/2 weeks later, on December 23, 2002. It was hell on earth (still is) and makes accepting Beth's problem even harder. Anyway - Bethany is our only child right now . . . but I hope to have more in the future. Here's a question: do any of you with other children find it hard to spend the necessary time with your DS child when there are others to tend to as well? Are your other children younger or older than Emily, John-John, Justin, Olivia or Natalie? Thanks for the compliment on Bethany's name, Pat. Her full name is Bethany Paige. I think it's cute too - but a 4th child after 3 in 3 years! I don't know if it's THAT cute! :) To tell you all the truth, I haven't heard many things about Nutrivene that inspire me to take on that expense. And, I'm still waiting to hear from the pediatrician on it. I gave her material I compiled - she didn't know anything about it. I will continue playing with Bethany and spending all of my time with her - in fact, the little ... started rolling over from her back to her tummy today and now I can't keep her on her back! She loves being on her tummy. She's 12 weeks old today. She's going to be a pip to keep after once she becomes mobile! Thank you all again, and I would love to hear more about Emily, John-John, Justin, Olivia and Natalie. Are they all in school? Did any of you use sign language to aid in speech development? Did any of you do regular mommy & me classes? Some of you said that you found the kids did better when they spent time with children who did not have developmental disabilities. I'll keep reading and writing. - Your new friend, Marcy. | ||
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| Name: | AMY Email: | ||
| Child: | Natalie | ||
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Welcome!Welcome! and congrats on the birth of you baby girl! I was very frightened when my daughter was born with Down's. I thought that if there was a minute during the day that I was not working with her as far as therapy was concerned that if she couldn't do something that it was all my fault. Just playing with your child is therapy. No matter what you are doing with your child to teach her it should be fun. I still worry that I am not doing enough but I can never do enough for her. The biggest thing that helped my daughter was to not do everything for her...meaning letting her do tasks on her own or at least attempt them on her own. My daughter is 4 now and I have been very blessed. She is finally over all of her illnesses and since she started pre-school she has blossumed. I find the more she is around "normal" children the more she does. Everyday is a new leason to learn but it is so much fun! I wish you all the very best and am so happy for your beautiful gift! Amy | ||
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| Name: | steff | ||
| Child: | olivia(6) | ||
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WELCOME MARCY and BARB!!!!! Marcy like everyone has said you are doing great. And the books on gross and fine motor are spectacular resources for you and your child.Liv basically we just talked to her and sang to her all the time.OMG she was the best best baby!!!!! One mom gave me a bit of advice when I had Liv... She said do what you are doing now and ANYTHING that is not relevant(papers,excercises for kids a bit older etc0 put away and save for later. ALL that info can be EXTREMELY overwhelming.She was right and about 6 months after Ihad liv I started to delve into the paperwork. FINALLY FINALLY last week I gave away my notebook with tons of info to a new mom(my hubby is so glad I finally got rid of the 2 telephone books high of info and books on ds that I had read and were no longer relevant for my 6 year old.) She was sooo happy to get the paperwork and i was so happy to share what I had learned with someone who really had an true interest .So we all felt good about ourselves.lol... BARB!!! Whatta good gramma. Olivia loved MUSIC and us singing to her and mirrors to look at herself and yes the BOPPY pillow came in quite handy about 5 months of age. ALSO can I tell ya one thing my mom did for me that was her GREATEST GIFT??? The first week after Liv was born I was a MESS(I didn't know beforehand) my mom took her into her arms all the time and pointed out all the cute baby things she did. She rocked her she held her she mentioned every cute thing she did. THAT made me feel awesome. She showed me that she was #1 a baby....Her example made my emotional mind feel MUCH more at ease. GOD love my mom... ;) Hey the other BARB how is Miss Allison? Is she back to her old self? Haven't seen you post in a bit. AND WHERE THE HECK IS LINDA>>>ADAMS mom??? YOOOOO WHOOOOO where are you???? JACKIE Justins mom... THANKS!!!!!! Liv goes for a sleep study in 2 weeks and we see pulmonary after so not sure how they are gonna do her meds.Her ped said she would knock off the cromolyn sodium in a couple weeks and keep her on pulmicort every day 2 times a day. Hmmm. Not sure if that is right so pulmonary here we come.Do you rinse out your girls mouth after the pulmicort? I was told to have Liv rinse and gargle after that and brush her teeth and wash around her face real good where the neb mask hits cause the pulmicort can really irritate your skin. Also wash off the mask really good too. Just thought I'd share sure you already know that but never hurts to share. (((HUGS))) to you for answering my ?? I'm going to take off. I am in charge of the yearbook at school so ALL my pictures will be included..:) I am the picture fiend. LOL Gotta git. Oh yea the cac a computer resource center here is donating a bunch of adaptive computer equiptment to our school. YAY!!!!! The school is quite happy with me right now...LOL KISS BUTT!!!! hee hee steff | ||
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| Name: | Jackie Email: | ||
| Child: | Justin 3 3/4 | ||
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I still remember in the beginning, I wanted all and every type of therapy available, so here I was spending most of my time driving from one therapy to another until I realized I could be using that driving time to spend more time with my baby. Whether you know it or not but just the everyday play and interaction time is therapy, but it sounds like you are doing everything already. Yes therapy is GREAT but it shouldn't take over your life. We go every 6 months for a follow up and re evaluation, and just to touch base with how Justin is developing in different areas and if there is something else we should be working on. As far as "maintaining" where Bethany is just keep doing what you are doing, as she gets older oh boy will she let you know when she's had enough;)You may also want to check out the 2 books on Gross Motor Skills and Fine Motor Skills. Overall it sounds like Bethany is doing GREAT and mommy is doing a WONDERFUL job!!!!!!!!!!! | ||
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| Name: | Sarah Email: | ||
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If anyone could help, please do! You can e-mail me! My report is due Monday, so please hurry if you can help! Thanks so much, God Bless, Sarah | ||
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| Name: | Jackie Email: | ||
| Child: | Justin 3 3/4 | ||
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| Name: | Annie S | ||
| Child: | sonny 9 | ||
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Barb I hope you keep the showers as normal as possible and be happy for her ...celebrate the new baby ....because that is what they are babies..just sweet loving innocent babies congrats grandma and enjoy... Annie S | ||
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| Name: | Jennifer Email: | ||
| Child: | Courtney-9, ds and 3 boys | ||
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I suggest you take the time to go through all of his articles and links. He is a very wise man who has a personal investment in his work. Congrats to you and your daughter. toys....anything bright and musical....and soft...Courtney had a toy store in her room. And a large mirror was her favorite. She would scoot up to it and just make faces and laugh all day. little floor mats that have the toys that dangle above them were good. Encouraged her to reach and use those muscles. I can't say that I bought much different for my other kids either. They all enjoyed the same things. Boppy Pillows are good! If you get her a baby swing....make sure it is one that reclines pretty good. When Courtney was a newborn...she was pretty floppy, so sitting up straight was not an option for a little while. She did love her swing too! I think she would still swing in it if it wouldn't break! If you have any questions, feel free to ask. We would be happy to help. Jenn | ||
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| Name: | Suzi | ||
| Child: | Merideth | ||
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COngrats on the new Grandbaby Barb & congrats to Bethany's mom! There are some adaptive things that were nice to have for Meri as in infant.One was a tub we had that I think is made by First Years. It's hinged & I think called 3 in one.It has a built in saftey ring & reclines something like a play seat. We used it almost till Meri turmed 2.Till her blaance & mobility were to were I felt she was safer in the tub. Also nifty toys with things like mirrors & sounds.A gymini or other play mat & baby gym & I'd say the Baby Einstein videos are all things I'd put on a wish list. Oh & a Boppy pillow. On the vitamins. I don't think there's any real proof that Nutrivene is any better than the flintstones or other chewables. Just don't add extra iron. You can find articles on that on Dr Leshin's site which should be accessible thru the links here.Nutrivene had a sort of Loaded webring of "supporters" so when you do a search all this biased info comes up. None of the Dr's in my area will approve it & that includes some of the top NDSA people. Robin, I'll call or check in with you later. It's a zoo here too.For alot of reasons.Glad to hear SuperDave got work even if it is out of town. Susan, Poor Jordan!I hadn't checked back since we talked Sun. Everyone-please pray for us, tomorrow at noon is Meri's appt at Childrens for her cardio evaluation.I'd love to hear she won't need the surgery.Please think of us ! Suzi | ||
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| Name: | barb Email: | ||
| Child: | unborn | ||
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| Name: | Pat Email: | ||
| Child: | John-John, 4 3/4 | ||
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| Name: | Susan | ||
| Child: | Emily | ||
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Susan | ||
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| Name: | Susan | ||
| Child: | Emily, age 12 | ||
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~ Our life these days consists of baseball and more baseball! Jordan seems to have either a practice or a game every night of the week......as much as I love watching him play, I'd love one whole night at home. Emily also started SACC baseball last Sunday afternoon. THAT is a blast! She is doing really well with it this year too. During her game, Jordan and another boy were doing batting practice, and Jordan got hit in the eye HARD with a baseball. Someone brought him to me (with Jordan insisting that it didn't even hurt), and I nearly freaked! His whole eyelid, above and below was swollen and bruising already.....and a streak of blood running down his face. We put an ice pack on it, and the swelling started to go down, and I thought it would be fine. He went to school on Monday and it seemed like he was fine. On Tueday, his teacher called me and said Jordan couldn't see out of it. Off we went to the eye doctor, who had some cool equipment to take a photo of the BACK of his eye. There was a broken blood vessel and a LOT of swelling (not on the outside), that was messing up his vision. The doc gave us steroid eye drops, and we have to take him back on Friday. REALLY scared me......the kid is not afraid of ANYthing though! ~ TOMORROW is Kaden's birthday. HAPPY BIRTHDAY Kaden!!!!! I'm hoping to get to see them soon!! Susan | ||
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| Name: | Marcy | ||
| Child: | Bethany | ||
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We began early intervention about 3 weeks ago - and right now Bethany is doing wonderfully. She is actually way ahead of where a normal baby should be right now. The problem is, I want to do everything I can to maintain her progress - but no one seems to have answers for me on how to do that. If anyone has any suggestions at all, I would very much appreciate them. I do all the obvious things such as care for and love her like any other infant, do PT exercises, play with her, read to her, play and sing music, baby massage, try to use "cause and effect" types of toys etc-. But, are there any educational types of things that anyone has found useful?? Also, I have heard much about Nutrivene-D. Does anyone have any comments about that? I understand it's controversial - but does anyone know of any drawbacks to trying it? I'm just getting my feet wet and would appreciate any comments and suggestions. Thank you to anyone who reads and responds to this message. | ||
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| Name: | Robin Email: | ||
| Child: | Chase/11 | ||
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Susan ...you really cant get on the BB??? This sounds like a plea for help is needed, did you get ahold of Michelle MC? Yikes! I went to the BB and asked for help with gettting Chase services for swimming thru the school so maybe you didnt get to see it? Anyone who has a child who gets swimming please let me know how you managed to get it written into the IEP, I am having a terrible fight with the school district and the thought of wanting to punch the building principle right in the nose has crossed my mind often so maybe Trish ..you could do it for me? It would help rid you of some of the anger you have towards those stupid rude nurses you had to deal with. I have my own personal nurse and she is never snotty or mean and has never given me a frosty stare...have you Susan??? :-D Dave and I took Chase to the U of M today to see his pyshc and again we are doing another med change, remind me to NEVER brag about his good behavior as it quickly turned bad again:-( Bad news..I cant elaborate or I will burst into tears...but Dave has to leave for a whole month to go out of state to work, I know lots of husbands have had to do that but I swear to you.... Chase requires at least two people all the time and how I am going to do it all is far beyond my comprehension, even Chase's dr today was horrified for me. I am simply wayyyyy too old for this I think, rotten back, rotten child, rotten dogs.....sighhhhhhhh :-) hugs and love to you all but if you dont hear from me for a while, know it is because I am alone :-( love and hugs, Robin | ||
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| Name: | Jennifer Email: | ||
| Child: | Bryan Knipp, Jr. | ||
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| Name: | Jackie Email: | ||
| Child: | Justin 3 3/4 yrs. | ||
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For Justin we also have the Flovent 220 inhaler for those tuff days and a standing order of orapred. Oh I hear ya on the appetite on those things, but he is usually good on just a five day burst whereas Miss Alyssa usually starts out on five and ends up going on another 10 day dose grrrrrrrrrrr. When is it they are suppose to grow out of this;) Hopefully this will work for Miss Liv and hey lots of swimming:) Ok Justin update:) He started his new school last Thursday and man what a difference in teachers and school. He has been leaving his glasses on the entire time, hmmmmmm amazing what happens when you actually take them out of the book bag and put them on, he is really doing great there, they have him drinking out of a regular cup, other school kept using a sippy cup grrrrrrrr even though we had his own special cup. They are working with him on gripping a crayon properly, yes they actually put crayons out, sorry other place didn't have anything like that. So I am keeping all the daily notes from the new school and compiling me a little file, at the end of the school year I will be heading to the Board of Education along with 6 other parents. His VSD is still there, so we have to watch for the warning signs yet, they took his last T-Tube out and did a hearing test which came back normal, so we watch for any signs there as well, now we are schedule for a Speech reeval. at the hospital next month. Other than that he is doing great, oh wait he is climbing the fence in the backyard grrrrrrrrrr Robin HELLLLLLLLLLLP!!!!!!!!!!!!! the little snot goes from one section to the next when we tell him no then when he runs out of sections he goes and gets the lawn chairs puts them against the fence and goes over that way grrrrrrrrrr. That's about it for now, HAPPY BELATED BIRTHDAYS!!!!!!!! and Prayers and Hugs heading out for our sick fwiends and family. | ||
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| Name: | steff | ||
| Child: | olivia(6) | ||
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JENN thanks for the update... Sheesh sounds like you are WAAY too busy. Praying for a speedy recovery for Darrin. Susan we saw a few dolphins friday swimming at the beach. Its been sooo hot here and so i took the kiddos to the beach.The kids were sooo excited. My dad is an awesome bodysurfer and grew up in Venice. I can still remember sooo clearly swimming in the ocean with him and seeing dolphins all the time they are so cute always look like their smiling.Although I usta think they were sharks and swim as fast as I could AWAY from them. Trish...sounds like dad will be in better hands at the nursing home. I haven't had any problems for a long time at the hospital. I guess we are there so much they just know how we like to be treated.SO....once ya learn the system it gets much easier.HUGS and prayers for you and your dad!!!! CONNIE a fire!!!! GLAD your all safe and prayers going your way too!!! BETTY... at around Christophers age or perhaps a bit older my hubby got Olivia this talking parrot. It repeats whatever you say exactly how you say it. Olivia LOVED that thing and even named him "herman". I think it was a great toy cause it just reinforced EVERYTHING she was saying and she could hear how she sounded.She had that sucker till she dropped it one faithful day a year later. Poor Herman was a goner. Okily dokily... Oh yea jackie Justins mom does Justin take Pulmicort? Liv went to the doctors yesterday regarding her asthma and now she has to do thru the nebulizer...Cromolyn sodium 2 times a day with the pulmicort 2 times a day and her albuterol as needed which is every 4-5 hours. And she is taking the singulair tablet at night. So now she is haviung 6 breathing treatments a day!!!What do they have justin on? At her asthma recheck yesterday her sats were 89 hence the pulmicort which we were trying to avoid as steroids make Liv sooo HUNGRY!!! She lost 2 pounds on her low carb diet....YAY for Livee!!! Livs obsessed with going to someones house everyday after her afterschool program. I had a sad thing happen that really miffed me last week. Livs Boyfriend Joshua came to the park with us for a couple of hours. Well Liv really loves him and him her. When his mom came to pick him up she said to me her boy wasn't going to the afterschool program on Tuesdays (the only day he went).I asked why and she said she prefers him to play with "typical " friends cause he is picking up not so great behaviors. So Liv them asks her can she come over .The mom said as usual NOT TODAY LIV.(shs asked her about 10 times and always an excuse.Her son has been to our house and taken places by me so many times and Liv has YET to ever be invited to HIS house. This boy has been coming since he and Liv were 4. Then the mom starts going on about her wanting him to play with typical kids and she ALWAYS seems to be having other kids over but never Liv. So I guess i got the hint. Really ticked me off. liv speaks WAY better than him and has NO behaviors that he copies. Actually if anything he can do some crazy things and yet he still comes to my house. So I am a bit miffed and hurt by her comments.Cause Liv is soo sad she has never seen his house or been invited to play with him.Oh well...Guess he'll just come to our house. funny thing is she is PERFECTLY willing to have him at our house a lot.Is that ironic? I wouldn't not take him cause his mom is a pill cause Liv and him are best pals but how RUDE!!!! Well must be going. Yesterday I was trying to do some stuff but they closed all the streets by my house due to finding old WW2 artillery and bombs in a development I am completely AGAINST them building. They built some places and it sits atop methane gas.Has made our neighborhood full of traffic and they are building on beautiful land that is home to butterflies and rare wildlife. It is wetlands.They even are building atop an old Indian cemetary and digging up old bones. Now that is sick.Oh well enuf moaning .have a great week and talk to you all later. Kyle and i are going to the beach afterschool(they get out at 1:30 on tues. | ||
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| Name: | Jennifer Email: | ||
| Child: | Courtney-9 | ||
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Now, about Darin... They took him off his Thyroid meds Friday so yesterday...everything came crashing down on him....He could barely move. Now he is on an iodine free diet. Which means, no dairy, cheese, butter, milk, no salt, nothing with soybeans, molasses, red dyes, you name it! He has been eating the heck out of chicken and salt free Tony Chacheres saesoning. That will be getting old in a few days. I did find a good recipe book that had a few ideas. Evidently he is having a bunch of scarring in his neck. It is bulging and is rock hard, making it almost impossible to move his neck. He has to do the whole move the body to see what is next to you thing. They are going to have to do something about that. He still can't feel anything from his ear to his shoulder, including his jaw line. He has been thinking alot about dying and trying to make sure things are in order. I can't get him to be positive about anything. I refuse to think that he is going to be taken away from me this soon! I know that they are going to take care of all of his cancer with this treatment! Right now we are trying to figure out what we are gonna do when he gets out of the hospital following his treatment. He can't be around the kids for a week after that. The radiation coming off of him will be dangerous for them, so I will more than likely be staying the night at my Grandmothers, taking them to school, coming to check on Darin and make sure he is eating, then picking them up, and going back to Grandmas. The gas alone is gonna kick my rear....30 minutes each way. SO there is our update...Lovely huh? Courtney on the other hand, what can I say? She is great. Parading around her ribbons she won at Special Olympics. The boys are fine too. They started baseball and tball. One more thing to do....Like we don't have enough. lol... Happy Birthday to those who have had birthdays....Sorry I missed them! Take Care you guys, Jenn | ||
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| Name: | Betty Email: | ||
| Child: | Christopher Kelly 3ys8m | ||
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But I just wanted to let everyone know Christopher is doing great. His speech is comming along he is trying to say new words everyday he will try to repeat everything now. All his words are not clear but he signs along with then, but some of his words are very clear though. He went to Sunday School with us yesterday and we got the biggest bless out of him..He got up in front of the church with another little girl and sang a few songs with his sunday school teacher you could hear his little voice and he was doing the signs to Jesus love me it was so cute but he had to have papa up there beside him. He is very shy just like his mommy. But preschool has helped him alot. He had new tubes put in his ears last month and had his adnoilds removed so his snoring is alot better now. He has a little cold right now but doesn't slow him down any. Well I going to get off here just wanted to let everyong know everything is going great with Christopher. Betty | ||
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| Name: | Christie | ||
| Child: | Chris aka Escaper yesterday | ||
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ROBIN ~ WHERE ARE YOU girl??? Can you not get into the BB too???? Its been way toooooooo long :-( and I am having "RR" withdrawals :-P CONNIE ~ OMG girl THANK GOD you are ALL safe, I am sure its a royal pain BUT people are more important then any personal thing you may have lost. HOPE all is fixed and you guys are safely BACK home ASAP. K, this sounds NUTS I know, LOLOL BUT is anyone out there into what dreams mean?? YIKES last night I had a wild one, LOL I was dreaming I was in my home and in our kitchen standing by the sink and heard this odd noise and BAM a dog, nooo kidding a DOG came shooting out of our sink drain, OMG, LOLOL it was wild i tell you and NOOOOOOOOO I only had sprite before I went to sleep ;-) BLESSINGS to ALL CC ;-) | ||
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| Name: | TriciaF Email: | ||
| Child: | Patrick 4 | ||
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Other than that, he seems to be coming along, more aware of his surroundings. Susan, I agree that Dad will get better care at the nursing home, if only because my sister in law works there and can monitor whats going on. Thanks for all your kind words...you guys are the best. Susan, I hate you can't get on the BB. I knew something was wrong when you did reply on the dolphins. Steff, girl I swear I don't see how you deal with these hospitals all the time, I would have major migrains. Everyday we have a new nurse who doesn't seem to have a clue whats going on with Dad's case. I am like a broken record filling them all in. But, have had some fun this week and will tell you all soon about this boy with mosaic Ds that I know. I talked to his mother at length on Friday and the story is just amazing!! He is 16 and last year scored a 1350 on his SAT exam!!! But he can barely pass high school. (I'll explain more later). Better run....am so tired....Have a great week everyone! ~Tricia | ||
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| Name: | Susan | ||
| Child: | Emily, age 12 | ||
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Kathleen: I was really hoping this problem wasn't the same thing you've been going through! Wonder what we did to get booted??? And I've tried so hard to BEHAVE lately!!! Oh well.....for now, I'm content to read the BB posts and reply here! Susan | ||
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| Name: | Angie Email: | ||
| Child: | Jordan | ||
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This is Angie, Jordan's mom. Thanks for sharing your experiences. I will be winning the lottery next Saturday and plan on taking you with us when we go at the end of the summer! lol But seriously, thank you again! Angie | ||
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| Name: | kathleen Email: | ||
| Child: | Rhienne, 8 | ||
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| Name: | Susan | ||
| Child: | Emily | ||
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~ Still not able to post at the BB, but I can read all the posts. GOOD LUCK TO BEKAH on the cheerleading tryouts tomorrow!! (and to her mom on the IEP meeting too!) That's really awesome....it's not something I can see Emily doing. She is doing really well in gymnastics and getting so much better with the balance beam (WALKING on it, not doing cartwheels or anything), but she's not able to do cheerleading "moves". She's certainly LOUD enough, but has a really big shy streak! WTG BEKAH!!! Susan | ||
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| Name: | Pat Email: | ||
| Child: | John-John, 4 | ||
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TRISHA..How's your dad doing now? Susan had some great ideas. JENNIFER..I don't know if it would help but I always told my kids that they would always be my baby even though there was another one coming. I also told them the new one coming was there baby too. Of course I also told them when John-John pull your hair he's just trying to tell you he LOVES you. To tell you how well that worked, one time I hear the 3 yr old say "I know you love me John-John, but will you stop pulling my hair" and the next time as the 1 1/2 yr old is yelling the 3 yr old is saying "he's just trying to tell you he loves you Laura". Babys pull hair & mine were all so close. Maybe you could stree that as a big girl Abigael could help & include her in little things. John-John LOVES babies.I've always said "gentle" every time he comes near a baby. Don't get me wrong, I know you dealing with underlying issues as in daddys not home & she can't express that. I remember when dad (a naval officer) was away that's when things would happen ie my brother had a stay in the hospital. Of course we lived in Japan at the time & there was no family around to help. we'll be praying for you. Hope all calms down soon. | ||
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| Name: | Susan Email: | ||
| Child: | Emily | ||
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Susan | ||
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| Name: | Susan | ||
| Child: | Emily | ||
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Susan | ||
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| Name: | Susan | ||
| Child: | Emily, age 12 | ||
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~ TRICIA: I'm sorry to hear about the loss of Chelsea, and your dad's hip. I take care of patients with new fractured hips every day, and it's really rough for several weeks. It's so interesting to me, because there is so much bad press about nursing homes, and yet......we frequently hear that the nursing care in the hospital isn't as good as at the nursing home. I do hope, whatever it takes, that your dad will get better care for the rest of his stay! Will he go to a rehab center/nursing home for therapy for a while? I really recommend it because he'll be able to get a lot more therapy than with home health. I loved Patrick's candle blowing story!! Happy belated birthday to him! ~ FRAN: Just a quick note about your question regarding when we told family and friends about the diagnosis of Down syndrome. We found out before our daughter was born, so we had already told as many people as possible before her birth. Then, we included a note inide her birth announcement to let everyone know......it basically told about her diagnosis and about her surgery, with a note about her progress following her surgery. We were very positive in this note, and asked everyone to be thrilled with us over her birth and to accept and love her without reservation. ~ HOLLY: Happy birthday to Jake! Any chance your family will join us at Cedar Point? My geography is terrible, but I'm thinking PA is pretty close to Cedar Point. Would love to see your family again! ~ WELCOME BACK HEIDI!! ~ STEFF: GREAT to hear Liv is doing soooooo well. Her speech has always amazed me! ~ JENNIFER and ABIGAEL: Welcome to Uno Mas!!! ~ Ok...the reason I went from the BB to post here is regarding a thread about swimming with dolphins. The place where our family swam with them a couple years ago was called Discovery Cove. It is owned by Sea World in Orlando, FL. It was such a wonderful experience for everyone in our family!!!! In my opinion, it's a bit overpriced, but we still felt that it was worth every penny. The actual time we were in the water with our dolphin was only about 20 minutes, but we really loved it. One good thing for us was that we had been to Sea World the year before, and Emily spent a lot of time at the dolphin area where she got really comfortable touching dolphins and wasn't afraid at all. Included in the admission price (approx $200 per person) is a 7 day pass to Sea World, lunch, unlimited swimming in various areas with coral fish, rays, etc. The beach areas are wonderful, the food was great....I could go on and on! Email me if you have other questions, but I really do recommend it. During the time before our dolphin swim, we had some instructions from the dolphin trainers, and they said it is actually illegal to swim with dolphins in the "wild", as well as dangerous. No matter what.....this was a FUN time for us! ~ Have a great weekend!! Our computer is working only about half the time, so I'm only here off and on. HUGS to all!! Susan | ||
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| Name: | steff | ||
| Child: | olivia(6) | ||
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TRICIA!!!!! AWWW GF BIG HUGE GIGANTOR CYBER HUGS and prayers your way. I was so shocked to read about all the trouble and illness your family has been going thru. BUT FIRST hing. Liv didn't have her first real party till she was 5 HAPPY BIRTHDAY HANDSOME PATRICK!!!!!!! Thankfully Trish birthdays are not as intense as when the kiddoos get older and expect the whole party thing. I never had a big party for my kiddos till they turned 5 and they could have cared less till then. I have been to more 1 and 2 yr. old parties where I am like SHEESH the parents spent a FORTUNE and the kids are ready to nap and are cranky an hour into it. LOL...SO good thing he is young and doesn't really care as much yet plus you can do a special thing with the family after your pops gets out of the hospital. TRISH...CAN I RELATE???OMGosh. I have had more problems with Jeff at the hospital till I got a patient advocate on my side. After Jeffs valve transplant the surgeons released him after 5 days. Which is the norm but Jeff was NOT OKAY. I brought him to his docs 2 days later and his primary care FLIPPED HIS LID. He was so sick they transported him across the street cause they didn't want me even driving him. AND they have let us walk over from clinic numerous times. The attending just about had a FIT at all the surgeons for releasing him. CAUSE the surgeons aren't EVEN supposed to discharge a patient from the hospital they are supposed to release you to the general med team or whatever flooor you are on and THEY release you.,I think Jackie (ems ma gave me the secret of a patient advocate. I beleiev either older people and kids who can't relay their feelings can be mistreated by being IGNORED...SAD SAD SAD... They will try to push you around. ya know what I did is when I got someone who was good I would IMMEDIATELY write one of those notes that the hospital gives you to say GREAT JOB to the great employees. I made a BIG DEAL of someone who treated my hubby or Liv really well and LEFT IT OUT so other less GREAT employees(mainly nurses) could see that I care about treating my family well and will acknowledge them in a BIG way. They get perks for lots of those.. ;) Once I came in to Jeffs room and a nurse was reading what I wrote about a great nurse and ALL OF A SUDDEN trreated Jeff soooo good. Hee hee. So sorry your life is crazy now and YES CINDY doesn't she look so young and skinny???GRRRR. You pretty girl you. Hope you can get some relief soon and PRAY your dad gets the treatment he deserves. regarding the pain meds!!!!!hERE'S WHAT i DO. wHEN THE DOC COMES IN HAVE THEM WRITE AND standing ORDER FOR PAIN MEDS EVERY 4 HOURS.See sometimes the doc won't write it then the nurses have to keep calling the doc everytime the pt. needs new pain meds. Get a copy of the standing order and show it to every and all nurse taking care of him. or I guess if they won't copy it have it put FIRST in his chart so their is no denying it. go to the charge nurse and tell em the prob and ask if your dad had a standing pain med order from the doc. JENN how is Darrin??? Worried cause ya haven't posted. ((HUGS))) to you. Love ya guys and laura sorry your dad is unwell and hope he is feeling no pain at least. Like I said I would be a terrible doc cause all my pts would most likely be addicted to pain meds cause I hate to see people in pain. My hubby has a pain med patch that works so well. Would that maybe help your dad instead of swallowing pills???? HUGS and prayers your way too. WELL my girl is WHINING she is up too too late and well a BIG GIANT WHINER so off to bed. Nighty night.. Steff | ||
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| Name: | laurasnowbird Email: | ||
| Child: | Ethan, 28 months | ||
| Comment: |
~ ~ ROBIN: Thanks for asking about my Dad. He is actually doing a little better - enough so that I've quit expecting to hear horrible news about him every time the phone rings. He is not expected to get better, but at least we are being given a little extra time with him. God is good! ~ ~ Rod's Dad has been in and out of the hospital for the last six weeks, which has been stressful. They were in Florida for their vacation, so we were unable to visit him, which made it much harder to deal with. BUT, they (Rod's mom and dad) got home from Florida today. Hurray! I've missed them terribly. (Yup, I must be sick, I LOVE my in-laws!) ~ ~ CONNIE: Wow! Sorry to hear about your house, but glad to hear that everyone is OK. Nice to see you post, even if it's about disaster! LOL. ~ TRICIA: Happy belated birthday to Patrick!! Loved the straw idea! ~ Sorry to hear about your hospital experiences. We've been going through the same type of thing with my dad, and I've come to the conclusion that the hospitals are just horribly understaffed, although that doesn't excuse the attitude you are getting. We also had to have a beloved pet put to sleep recently. My 12 year old cat, Boo-Boo Kitty. He was truly part of the family, and it was really difficult. Hugs to you! ~ HEIDI: Nice to see you! I had to laugh about Ashlie and the suckers - it sounds suspiciously like something my middle child Victoria would do. Anything for a treat! ~ ~ JENN: |