Guest guest Report post Posted May 4, 2001 Hi Donna, Hope all is well with your family. I E-mailed you, but don't know if you got it or not. We will be staying at the Radison in Trevose if you get a chance to get away. Would love to see you, but if you can't make it, I totally understand. We are leaving at 6AM tomorrow to get in some sight seeing before we check into the hotel. E-mail me if you get a chance? Gail Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 5, 2001 In a message dated 5/5/01 12:06:09 AM Eastern Daylight Time, smilinggail@... writes: > > > > > > Hi Donna, > Hope all is well with your family. I E-mailed you, but don't know if you > got > it or not. We will be staying at the Radison in Trevose if you get a > chance > to get away. Would love to see you, but if you can't make it, I totally > understand. We are leaving at 6AM tomorrow to get in some sight seeing > before we check into the hotel. E-mail me if you get a chance? > Hi Gail, Are you checking your email while you're away? I was downtown last night until just a little while ago. Duff surprised me and whisked me away to the Ritz for an overnighter for our anniversary. Isn't he the best?!? Anywho, I am back and will call the Radison later. Donna Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 8, 2001 Hi Donna, My DH works for a Biotech company called Corixa that makes drugs to cure cancer and other illnesses. They have a drug that targets Non-Hodgkins Lymphoma that has a radioactive isotope attached to it that goes directly to the cancer cells instead of the traditional chemotherapy which goes through the whole body. He is a biochemist and is attending a conference on Quality Assurance which deals with the regulatory arm of the FDA. He is staying at the Renaissance Hotel which he said is near the airport, but there is nothing out there so he's not too excited about that location. He's at the Renaissance because that's where the conference is being held. He plans to take a cab into town to go out to dinner the next few evenings and should be home late Friday night. Meanwhile my sister who lives in Philly is here now and her husband is leaving tomorrow on a business trip himself. So they won't even be in town while he is there. How is your sister in-law doing? My cousin Lucilla, from Italy is coming out later this month to s Hopkins to get diagnosed with MS. So we are waiting to hear what comes of that. I was thinking of you today because Brook had to have two baths since he went outside after dinner turned on a fuacet that is leaky and managed to get all muddy. It was a scorcher here today and we are having rolling blackouts so he really enjoyed that second bath. Marisa Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 9, 2001 In a message dated 5/9/01 3:24:22 AM Eastern Daylight Time, poggim@... writes: > He's at the Renaissance because that's where the conference is > being held. He plans to take a cab into town to go out to dinner the next > few > evenings and should be home late Friday night Marisa, Yep, there's nothing out by the airport, cept Vet's stadium to take in the phillies. LOL We're going out to dinner tonight; wouldn't it be a riot if we ended up in the same restaurant (Philly only has about a kabillion of em...LOL) We're trying a new place called Novelty in Olde City. The work your dh does sounds so cool. Duff does work with biochemists; I'll have to mention this conference to him; he may already know about it. thanks for asking about my SIL. She sees an MS specialist today; the best in the city, we're told. Duff and I cooincidentally met him on Saturday at a hotel in downtown Philly. There happened to be an MS conference going on and we stumbled upon it (we were there to celebrate our wedding anniversary, so it was so ironic). THEN the doc giving the lecture turned out to be the one Eileen is seeing today. Divine intervention, huh?!? Brook pulled a *Maddie*, eh, getting all muddy?!?!? LOL We're heading into our summer months here, which means three baths a day.......LOL How are you guys handling the rolling black outs? DOnna Quote Share this post Link to post Share on other sites
Guest guest Report post Posted May 9, 2001 Donna, My poor DH was too tired to go out tonight, so tomorrow he's supposed to try this new restaurant my sister recommended called Pod or Pods. Have you heard of it? My sister is flying back to Philly tomorrow. That's amazing that you met your sil's doctor like that. I'll let you know how my cousin does later this month, my sister from Philly, may be going with her to s Hopkins. Let me know how you like the doctor for your sil and I can mention it to my sister in Philly. I don't know if my cousin will be staying with her or what they are planning. Today my younger sister Jackie, who had surgery last month had another surgery today. She had to have half or her thyroid removed. So I have visited another hospital. I think including my sister's two operations at two different hospitals, my daughter's broken arm seen also at two different hospitals and my grandmothers time in the hospital gives me some kind of personal record for time spent in different hospitals lately. Gennie has to go back 2 more times to Children's Hospital, once to replace the cast with a shorter one and then to take it off. I can't believe it is Mother's Day on Sunday and fil's birthday Friday. I really don't feel like celebrating anything at the moment and I am totally unprepared!! We are awaiting our turn for a black out soon. My parents who live 3 miles away from me are lucky because they live very close to a water plant and they are exempt from the blackouts. I may be going over to their house a lot this summer if it gets really bad. Brook needs to watch his videos. I just hope it doesn't cause problems with his routine and school. They are trying to figure out what to do at the school because they are afraid of the blackouts happening while the kids are at ESY. Plus where Brook goes to school it gets quite a bit warmer, so they are talking about starting summer school at 7:30 AM. Sounds like Brook will be taking a very early bus. Marisa, Mom to Miles 14, Brook 11, and Genevieve 3 yrs Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 19, 2001 Donna, how is your sister in law doing?? Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 19, 2001 In a message dated 6/19/01 6:32:51 PM Eastern Daylight Time, Ltb3105@... writes: > > > > > > Donna, how is your sister in law doing?? > > > Ok . She just started a new treatment two weeks ago. Shots every week that she'll inject herself eventually. Things were looking very well for a while, but now the numbness has spread to her whole face, which is not a good sign. Last Saturday at the party here, she and I were chatting coming down the steps, and she suddenly *ploppped* on the steps. Yes, much like our kids do, cept she had no control. She acted like nothing happened and pretended she just wanted to sit and chat. Very weird for me, since I wasnt' sure what to do. She obviously wanted to pretend nothing happened. UGH!!!! Tough stuff!! Apparently, sometimes late onset MS patients become afflicted quick and fast. We were hoping she didnt' fall in that category. We're all nervous. Thanks for asking !!! How are you guys managing to get through the days without your Dad? Been there!!!! VERY VERY tough stuff!!!! {{{{{hugs}}}} Donna Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 19, 2001 In a message dated 6/19/01 6:32:51 PM Eastern Daylight Time, Ltb3105@... writes: > > > > > > Donna, how is your sister in law doing?? > > > Ok . She just started a new treatment two weeks ago. Shots every week that she'll inject herself eventually. Things were looking very well for a while, but now the numbness has spread to her whole face, which is not a good sign. Last Saturday at the party here, she and I were chatting coming down the steps, and she suddenly *ploppped* on the steps. Yes, much like our kids do, cept she had no control. She acted like nothing happened and pretended she just wanted to sit and chat. Very weird for me, since I wasnt' sure what to do. She obviously wanted to pretend nothing happened. UGH!!!! Tough stuff!! Apparently, sometimes late onset MS patients become afflicted quick and fast. We were hoping she didnt' fall in that category. We're all nervous. Thanks for asking !!! How are you guys managing to get through the days without your Dad? Been there!!!! VERY VERY tough stuff!!!! {{{{{hugs}}}} Donna Quote Share this post Link to post Share on other sites
Guest guest Report post Posted June 20, 2001 donna, that would have weirded me out to if someone just fell and acted like it was nothing... bless your heart and her too.. may you all have the strenth to endure this. she is very lucky to have you as a sinlaw and duff as a brother, it helps her i am sure knowing she has complete family support... i will pray the treatment works better for her......... hang in there and many hugs... ps glad the party was a success even if it did rain..... the rain i must have been anticipating blew to philly :-) take care >From: duffey48@... >Reply- > >Subject: Re: Re: Donna >Date: Tue, 19 Jun 2001 22:07:18 EDT > >In a message dated 6/19/01 6:32:51 PM Eastern Daylight Time, >Ltb3105@... >writes: > > > > > > > > > > > > > > Donna, how is your sister in law doing?? > > > > > > > >Ok . She just started a new treatment two weeks ago. Shots every >week that she'll inject herself eventually. Things were looking very >well >for a while, but now the numbness has spread to her whole face, which is >not >a good sign. Last Saturday at the party here, she and I were chatting >coming down the steps, and she suddenly *ploppped* on the steps. Yes, >much >like our kids do, cept she had no control. She acted like nothing >happened >and pretended she just wanted to sit and chat. Very weird for me, since I >wasnt' sure what to do. She obviously wanted to pretend nothing happened. > UGH!!!! Tough stuff!! Apparently, sometimes late onset MS patients >become afflicted quick and fast. We were hoping she didnt' fall in that >category. We're all nervous. >Thanks for asking !!! How are you guys managing to get through the >days without your Dad? Been there!!!! VERY VERY tough stuff!!!! >{{{{{hugs}}}} >Donna > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 18, 2001 Dear Donna, It's funny that you should mention Pepcid. I just finished reading an article on how Pepcid is helping some children with autism. However, they never tell how much to give. How did you start giving this to her and how much does she take in a day. Thanks, > Dear , this is just my opinion ,I dont know alot of other moms that > went thru what I did. was uncontrollable between the age of 3 and 9 > years old. I do not know what changed . She started her period then I > found a doctor that DX her with autism at the same time then I changed my > life style to fit s routines. I went on prozac around this time also. > I almost send away because she was so bad. Now , like I said ,I dont > know what happened but I have a very calm ,sweet ,easy going ( just dont > change anything without telling her first ) child .She is so good with > everything. One more thing ,she takes pepcid for her stomach. all of this > was around the same time so ( just my opinion ) I think it all has something > to do with the unbelievable change in her. Sincerely, and wish I could help > , Donna ((mom to 15 autism and 9 )) > ----------------------------------------------------- > Click here for Free Video!! > http://www.gohip.com/freevideo/ > > Re: Do behaviors really diminish after period > arrives? > > > > Hi Listmates, > > This question is directed to the parents whose daughter's have already > > had their period. I read some postings once that stated that behaviors can > > really get out of control just before a girl has her period, but once she > > gets it, things calm down some. Am I just hoping for the best or has this > > really happened to any of you. My daughter, , who is 12, has been > > having an increase in the temper tantrums, yelling, crying, pinching and > > hitting against her face(at least she uses a towel) over the past few > > months. No signs of her period yet. Can any of you share your experiences > > with the before and after period scenerio? > > Thanks again, > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 18, 2001 , threw up daily all her life, the local doctor here says is it called gerd ? The doctor started her on the pepcid (chewable) about her 11 th birthday. She takes one tablet before she eats breakfast everyday. She doesnt throw up any more inless I forget to give it to her . I buy it at Walmart. I will give her another one at night but only if she is acting like she is going to throw up (gagging)) . She will come to me if she wants one. Sincerely, Donna ----------------------------------------------------- Click here for Free Video!! http://www.gohip.com/freevideo/ Re: Do behaviors really diminish after period > > arrives? > > > > > > > Hi Listmates, > > > This question is directed to the parents whose daughter's have > already > > > had their period. I read some postings once that stated that behaviors > can > > > really get out of control just before a girl has her period, but once > she > > > gets it, things calm down some. Am I just hoping for the best or has > this > > > really happened to any of you. My daughter, , who is 12, has been > > > having an increase in the temper tantrums, yelling, crying, pinching and > > > hitting against her face(at least she uses a towel) over the past few > > > months. No signs of her period yet. Can any of you share your > experiences > > > with the before and after period scenerio? > > > Thanks again, > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 26, 2001 Donna, I'm glad you're feeling better! I know what you mean about the non-stop whirlwind keeping you going. I've been through that too, with multiple surgeries, seizures, etc. and then when it's over it's anxiety time. Once you get through the crisis you have to figure out how to get through the day to day stuff. That's hard too. Glad to hear you get so much love and support from your family. Have a great time at the beach! Marisa, Mom to Miles 14, Brook 11, and Genevieve 3 yrs Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 11, 2001 In a message dated 8/11/01 12:36:18 PM Eastern Daylight Time, paul.3@... writes: > Happy Birthday Old Gal! > > Hugs and a " Nice Nice Nice, Very Nice. SOOOO Nice " from Ben, > > Love, > MB > LOLOL thanks Beth!!! And thanks to you too Irma and a. We're going to a very fancy jazz/blues restaurant/club. You eat dinner (great food) in this cool room as various popular artists play. We've been before, but it was many years ago at a different location. It's called Zanzibar Blue. Very fun. is babysitting; may as well take advantage of her before she leaves next weekend for college.........:-( Donna Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 11, 2001 Happy Birthday Old Gal! Hugs and a " Nice Nice Nice, Very Nice. SOOOO Nice " from Ben, Love, MB Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 3, 2001 Hi . Not a problem. The pleasures and pains of computers. Smile. Donna Crow 813 SE Crescent Place Newport, Or 97365 Donna Donna, I owe you an apology. My computer crashed almost two weeks ago now. Hubby got another computer up and going for me, but I am not able to get anything off of my hard drive including your address to send you the vaccination information. Do you mind sending it to me again at jlgraves@... and I will get it into the mail for you right away. Sorry again. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 28, 2001 In a message dated 10/28/01 4:35:24 PM Eastern Standard Time, lslycun@... writes: > but I fear this might be > the first of many taunts, as his circle of friends gets wider as he > gets older. I pray it is the first and only. > Thanks again, > Lesley, > > > I hope not Lesley. I have five kids and no one has ever teased my kids because of Madison. We're probably just very lucky. There's been instances where my kids' peers have said something about the word *retard* and that has angered them. But no one has ever personally offended them with regards to Maddie. When they've had to listen to offensive remarks about retardation, I've told them how to deal with it. Our house is the house all the kids congregate in, and so all my kids' friends have a ton of exposure to Maddie. I think other kids just follow my kids' lead; so they don't necessarily think anything she does is odd (even though it is....LOL) I hope that you have the same experience, and that this is a one time thing for your family!!! Donna Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 4, 2001 Hi Donna, Thanks for answering me. I hope you don't mind but I have a couple of questions. I am getting an appointment to take both of my girls to a new Down Syndrome clinic in Nashville Tn. at the Vanderbilt children's hospital. I already take them there for several other things. Do you think they will be able to diagnose heer there? I thought it was a good place to start. I guess if she does have ASD then cirriculum and all will have to be different. I hope they can teach her now where she goes to school. To me they don't do too well with the kids who are Autistic in the cllassroom now. I have always known was different but couldn't put my finger on it. Would this be the reason why it took her so long to walk??? Is Madison potty trained yet? If so was it hard to train her? I must admit I am a little worried for . It makes me mad if all this time she has ASD and her ped. wouldn't even take the time to notice or anyone else who she has seen. I guess to them I am an overreacting mother. Thanks again Donna. Pam mom to Identical twins with DS age 6 duffey48@... wrote: In a message dated 12/4/01 9:26:14 AM Eastern Standard Time, p_houser37@... writes: > Sometimes when she is alone she will start laughing at nothing. She will > gigggle for a few minutes and it is so cute but I can't figure out what she > finds so funny. > Hi Pam, Madison (8, DS and autism) does all the things you mentioned (and more), but this one she does and I love it!!! She almost looks like she's envisioning something hilarious!! I have to say that your cutie does sound like DS/asd to me. Course, *I'm* not a professional. One of the things that Dr. Capone did when Maddie was being tested that was very helpful, was to actually do the forms with us. He asked the question and then we would have a discussion about Maddie and if that particular question applied and how. It was so useful in answering because there's so much that can be missed when you are living with your child. Maddie scored WELL into the range for autism on her tests (one mark I didn't want her to get a high grade on.....;-). The onset of her autism started at age 2 and was very abrupt. Her autism was quite blatant (still is) and anyone who ever met her never doubted the dual dx. It's not always that clear with most kids and in a way, I feel glad because we didn't have to deal with non-believers. Where did you say you were going to have her tested? You need to read Joan's D/S issue on DS/ASD and gather as much information as you can on the dual dx and bring it with you on your visit. You will need it for her school as well. The DS/aut listserv site has TONS of information for you to sift through. Having Maddie tested and then dx'd has been brought many emotions: being scared, nervous, sad, relieved, validated....Lots of things. But the most important thing that it has brought to us is a better education for her. Had she not been dx'd, I honestly dont' know where she'd be going to school right now!!! Good luck to you Pam!! We ALL know exactly what you are going through and what it feels like. We're here to help, support and listen in every way!! {{{{{{{{{{hugs}}}}}}}}}}] Donna Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 5, 2001 In a message dated 12/4/01 2:34:43 PM Eastern Standard Time, p_houser37@... writes: > . Do you think they will be able to diagnose heer there Hey Pam, Heck, nobody here minds questions Pam, so always shoot away...;-) If this is a DS clinic then I would imagine they would be more *up* on the status of DS/autism. Joan knows more about DS clinics around the nation. Maybe she knows someone at this one?? Joan? <<I guess if she does have ASD then cirriculum and all will have to be different. I hope they can teach her now where she goes to school. To me they don't do too well with the kids who are Autistic in the cllassroom now.>> Yes, it really does change the entire approach. There are so many various *teaching* methods out there and I don't believe in a one size fits all. What works for one kid, doesn't for another. We did Floortime for years with Maddie (still do some) and now ABA/discrete. I know we would never have been able to do the ABA if we hadn't done the Floortime. We needed the softer approach first for sure. But one thing I do believe that most kids with autism benefit by is a visual strategy of some sort. Maddie uses Pecs, but we also use our own adapted stuff. <<I have always known was different but couldn't put my finger on it. Would this be the reason why it took her so long to walk???>> I don't know about that Pam. Maddie is classic autism (seems more autistic than most kids with autism I know; that's why they call it a *spectrum* now), and yet she walked at 19 months. It even would have been sooner, cept she was very sick for three months shortly before the onset of her autism. Gross motor is Maddie's forte!!! She's amazing!!! She never loses her balance (although she may roof walk and railing climb and DELIBERATELY try to drop 20 floors.....;-) That would be a good poll to take though. How old was everybody's child when they walked? <<Is Madison potty trained yet? If so was it hard to train her?>> No she is not Pam. Although she sits for timed visits to the toilet and has gone numerous times (because we catch her in time). But know what? That is WAY more than I anticipated right now, so I'm happy. They seem convinced that it WILL happen some day. <<It makes me mad if all this time she has ASD and her ped. wouldn't even take the time to notice or anyone else who she has seen. I guess to them I am an overreacting mother. >> I know Pam. It IS frustrating. But no one knows our kids like us, and so we're the ones who recognize it when it shows. I have a wonderful ped who supported me and didn't laugh in my face when I first used the word autism (although a couple at her early intervention center did, her ST for one---they're not laughing now, are they???). He helped me every step of the way. We ran the gamut of medical tests to make sure it was nothing else, to be confused with autism (CD, GERD, Mono, hypothyroidism--you name it). Turned out she does have GERD and Hypothyroidism, but the autism was still there. He also supported me 100% when I went to Dr. Capone and he continues to help me with everything (whether it's a letter to the school district with help in placement or something explaining sensory integration so I can get funding for a rotary swing---he's done it all.....sometimes I think he thinks I'm crazy....LOLOLOL) And he does his homework; won't ever write something up unless he understands it completely. He has even said to people in front of me how much he has learned from me. Nice, eh? I'm very lucky!! And to think I was going to switch docs when I had Maddie because he only had one other patient with DS!!!! GLAD I didn't!!! Good luck to you Pam!!!! Donna Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 5, 2001 In a message dated 12/5/01 6:34:26 AM Eastern Standard Time, smilinggail@... writes: > Aww, poor n. LOL I imagine a lot of docs have had to try to hide > their amusement. It's really not funny that a child has to worry about > such > an awful thing is it? True true. But Bren's a bit of a hypochondriac anyway...that's why the doc laughed....LOL <<Will be a truly sad holiday for far too many this year. >> Yes it will Gail. Certainly!! All we can do is pray for peace and hope that those who have directly suffered from 9/11 find solace in their families. I read that a lot of families are changing their traditions and doing something different this year; just cant bear to do the things they always did with their loved ones who are gone. It will certainly be a time for us to thank God for our blessings and the gifts of our children. Donna Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 5, 2001 nathan was about 22months old when he could walk on his own. he also has alwys been very gross motor type of child.shawna. ===== shawna __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 11, 2002 In a message dated 2/11/2002 1:35:13 PM Eastern Standard Time, duffey48@... writes: > I have started lifting to try and build some strength.....LOL My 16 > yo thinks I am a totally cool mom now....LOLOL > Hi Donna, What a compliment! I bet you are a cool mom! Charlyne Mom to Zeb 9 DS/OCD ? Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 19, 2002 In a message dated 2/19/02 12:57:41 PM Eastern Standard Time, deanlig@... writes: > but when he cries and cries and I don't know why it breaks > my heart. Yes Dawn. It's torture isn't it? I hate that part so much too!!! I feel sad often about her inability to communicate, but when she's hurt it's even harder. {{{{hugs}}}} to you. <<Wish I could meet Maddie and all these guys!! >> Hopefully someday Dawn. In the meantime, you can go to the files and pull up two pictures of her (one is Cheesie Heaven and the other is the Duffey family). She's also in Joan's D/S issue of DS/ASD numerous times. Maybe you can get a pic of your cutie pie up on the page!! We'd love to see him! Donna Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 19, 2002 In a message dated 2/19/02 12:57:41 PM Eastern Standard Time, deanlig@... writes: > but when he cries and cries and I don't know why it breaks > my heart. Yes Dawn. It's torture isn't it? I hate that part so much too!!! I feel sad often about her inability to communicate, but when she's hurt it's even harder. {{{{hugs}}}} to you. <<Wish I could meet Maddie and all these guys!! >> Hopefully someday Dawn. In the meantime, you can go to the files and pull up two pictures of her (one is Cheesie Heaven and the other is the Duffey family). She's also in Joan's D/S issue of DS/ASD numerous times. Maybe you can get a pic of your cutie pie up on the page!! We'd love to see him! Donna Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 7, 2002 Donna, I was looking at a website Kathy posted and there was Maddie. It was an article about Down-syndrome and Autism. Maddie is so darn cute. I wonder when that picture was taken? How old was she? It brought a much needed smile to my face tonight. Diane Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 7, 2002 Is that the gross motor article or th eOT article? The photo of her bathing with her **ball**? Diane, you'll find quite a few of our kids in the DS/autism issue of " Disability Solutions. " Andy's on the front, my family in the letter from the editor, Maddie's in there twice, Ben is in there twice, Isnt' Gareth in there, too? And , a boy from England whose mom used to be on the list. And Maddie *is* cute! (check out the disability solutions article about texture progression and you'll find her slathered in spaghetti asleep at her high chair) j At 09:47 PM 3/7/2002 EST, you wrote: >Donna, > >I was looking at a website Kathy posted and there was Maddie. It was an >article about Down-syndrome and Autism. Maddie is so darn cute. I wonder when >that picture was taken? How old was she? It brought a much needed smile to my >face tonight. >Diane > >-------------------------------------------------- >Checkout our homepage for information, bookmarks, and photos of our kids. Share favorite bookmarks, ideas, and other information by including them. Don't forget, messages are a permanent record of the archives for our list. >-------------------------------------------- > > Quote Share this post Link to post Share on other sites