Guest guest Posted July 19, 2007 Report Share Posted July 19, 2007 In case you haven’t already heard! - On July 17th, 2007, the Governor finally signed HB 817 into law. It's been pending on his desk since May 24 because we wanted him to sign it before the end of the 2006-07 school year. HB 817 will allow students with disabilities to continue to receive IEP transition and support services until the day before the 22nd birthday (i.e., it construes the age 3-21 mandate of IDEA and the School Code to mean age 21 inclusive) if necessary to facilitate the student's successful transition to adult living. Many districts discontinue services and make the student graduate at the end of the school year in which the student reaches age 21. Some discontinue services on the 21st birthday. This bill will allow some students to have a full additional year of services. Note that similar provisions are included in the new ISBE rules governing special education. Last January we decided to go forward with a bill because the rules were tied up at JCAR , plus we decided it would be better to have this in statute anyway. Primary Sponsors were Rep. Beth Coulson (R-Glenview) and Sen. Deanna Demuzio (D-Carlinville). The Public Act # is 95-14, effective immediately. Have a great day! Marsie Marsie L. Frawley Health & Disability Advocates 205 W. Monroe Street, Suite 300 Chicago, IL. 60606 312 223-9600 312 265-9069 (Direct Line) 800-427-0766 (tty) 312 223-9518 (fax) mfrawley@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2009 Report Share Posted February 8, 2009 --thats great! Im so happy for you guys. We did a planned trial off starting last summer.......I was ready to beg our ID guy to restart them, but at the appt we had he said it was clear we needed it back--for two of the kids, and we restarted right away. Theyre getting much better already. I hope your kids do the same! valarie mom of 3 w/cvid - In , " " <hobbsfamily@...> wrote: > > Hello all! I wrote a month or so ago about the kids having been > taken off IVIG (last infusion in mid-Oct) because of hospitalists and > hospital administration having undue influence over our new, out-of- > state immunologist. We have now begun establishing relationships > with doctors at Riley Children's Hospital (the other one in town and > the better known one, but much farther away) and have just returned > from our bi-annual trip down to the University of Florida to meet > with our GSD specialist and some others that we see while we're > there, including pulmonary/sleep medicine. Our GSD doc was already > involved in this process and appalled at the treatment we got at the > first hospital (they basically questioned everything that had ever > been done for the kids and felt it was all unnecessary, from IVIG to > metabolic protocols, to whether they even have GSD even though a > liver biopsy proves it). He talked to our pulm down there about it > and she was equally appalled. We also saw a rheum/immuno at the > suggestion of our old immunologist who is now at Seattle Children's. > This is her old partner and thinks highly of her. Seeing this doctor > in Florida was to be a temporary thing and we would potentially be > going to Seattle soon. However, we had a great experience with the > doctor in FL, she felt like she could manage our kids from afar and > seeing them every 6 months when we come down, and she has our old > immuno as a back-up should the need arise. This new doctor was great > and very thorough. She couldn't believe what had happened and said > based on 's numbers and Meredith's clinical picture, they > should both be back on IVIG. She did leave it up to me and said we > could try re-vaccinating if we wanted but seeing how much better they > do on IVIG plus the very real probability that they both have mito in > addition to GSD and illness can lead to regressions, we all agreed > that resuming IVIG ASAP was in their best interest. She was totally > fine with our desire to do infusions at home and we are trying to get > that set up to start next week. Thanks for all of your encouraging > words and prayers! I am so grateful that I will be able to live in > at least a whole lot less fear that something will go terribly wrong > because they haven't been protected. > > > Mom to , 6 – GSD, CVID, mito > Meredith, 4 – GSD, CVID, mito > , 9 – healthy > Baby M #4 due in August > www.caringbridge.org/visit/mhobbs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2009 Report Share Posted February 8, 2009 , I'm sure you will feel much better having the kids on IVIG. I'm bummed to hear about your experience with hospitalists in Indy, I don't think I've ever had to deal with one. I'm also bummed that Dr. Belcher wasn't a better source of help for you, that really surprises me. We have never had any luck at Riley, I hope you can do better there. The docs at Riley could never find Conner's medical chart, regardless of which department we were in, which was extremely frustrating. The immuno (might have been hem/onc) we saw there also didn't like that I was questioning his CVID diagnosis and when I said that I thought we were missing something he sarcastically asked if I wanted him to check Conner for breast cancer next. Then our experience with the metabolic specialist after that pretty much clinched that we would never go back. Maybe you'll end up with a better team, definitely ask around to see if you can get some personal recommendations. (NEMO carrier) Mom to Hayden (14-unknown PID) Evan (14-unknown PID) Conner (14-NEMO; transplanted 8/17/07 - from an anonymous donor) Kelsey (12-unknown PID and NEMO carrier) Wife to (unknown PID) www.caringbridge.org/visit/smithkids Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2009 Report Share Posted February 8, 2009 , Dr. Belcher has not been involved in the kids' care. We were under the impression he would be, but IVIG was being managed by a hem/onc because of neutropenia issues as well and since infusions were being done there. Between that doc and the hospitalists, we were done with the whole hospital system because everything inpatient has to go through hospitalists. They really screwed up when had his surgery in October and instead of admitting their mistakes, turned everything around and said it was all unnecessary to begin with. I'm hoping we have a good experience with Riley. From a metabolic standpoint, we are already on the same page and miles ahead from where we were with St. V's. We will still continue to see Dr. Sufi from St. V as well as Dr. Maisel, who also has privileges at Methodist and Clarian North (closer to us). Since we also have pulm, metabolic, and immunology in FL, I'm not sure who else at Riley we will even need to see at the moment. Our neuro goes both places, so we're covered there as well. I have asked Dr. Bax for some recommendations (he's been our GI but is moving to Canada) at Riley since he trained there. Mom to , 6 - GSD, CVID, mito Meredith, 4 - GSD, CVID, mito , 9 - healthy Baby M #4 due in August www.caringbridge.org/visit/mhobbs From: [mailto: ] On Behalf Of Sent: Sunday, February 08, 2009 2:50 PM Subject: Re: Great news! , I'm sure you will feel much better having the kids on IVIG. I'm bummed to hear about your experience with hospitalists in Indy, I don't think I've ever had to deal with one. I'm also bummed that Dr. Belcher wasn't a better source of help for you, that really surprises me. We have never had any luck at Riley, I hope you can do better there. The docs at Riley could never find Conner's medical chart, regardless of which department we were in, which was extremely frustrating. The immuno (might have been hem/onc) we saw there also didn't like that I was questioning his CVID diagnosis and when I said that I thought we were missing something he sarcastically asked if I wanted him to check Conner for breast cancer next. Then our experience with the metabolic specialist after that pretty much clinched that we would never go back. Maybe you'll end up with a better team, definitely ask around to see if you can get some personal recommendations. (NEMO carrier) Mom to Hayden (14-unknown PID) Evan (14-unknown PID) Conner (14-NEMO; transplanted 8/17/07 - from an anonymous donor) Kelsey (12-unknown PID and NEMO carrier) Wife to (unknown PID) www.caringbridge.org/visit/smithkids Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 Congratulations! I am so proud of him and so happy for you. What a huge milestone! Jenn Mommy to Cole, 2 years old, 5th cast from Rochester, 13 degrees out of cast down from 47 > > Hi Everyone, > > Over the last few days Thaddeus has started crawling!!! ( well in his own way) he is kind of draging himself across the carpet face and all LOL. but he is moving. and i can see he is getting better day by day. I am soo happy and proud of my little man. We are getting on our way to have him walking. Its a good day > > > Mommy to Thaddeus 14 months > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 Watch out for the "commando crawl!" Your life will never be the same! (I used to want to put cammo paint on my kids because it looked like they were on maneuvers) Way to go Thaddeus!! Gail "The Earth is the insane asylum for the rest of universe" “Normal is just a setting on the washing machine.†-BumperSnickerz. ********************************************************************Mom to , 11/28/98 - ADHD/ODD/SIDand , 02/02/02 - Congenital Scoliosis, VATER Association (vertebral and renal anomalies), Torticollis, Klippel Feil Syndrome, Fused Ribs, First VEPTR Recipient at Cincinnati Children's Hospital 3/21/05; Spitz Nevus removal: 11/26/07 & 2/11/08; VEPTR Expansions: 11/05, 04/20/06, 6/12/08 and 8/14/09 and EARLY SUMMER 2010; From: <candice_welch85@...>Subject: Great News!infantile scoliosis treatment Date: Tuesday, April 13, 2010, 11:21 PM Hi Everyone, Over the last few days Thaddeus has started crawling!!! ( well in his own way) he is kind of draging himself across the carpet face and all LOL. but he is moving. and i can see he is getting better day by day. I am soo happy and proud of my little man. We are getting on our way to have him walking. Its a good day Mommy to Thaddeus 14 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 ,I am so happy for you! Way to go Thaddeus!!!TashaMommy of 5 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months. Brace 10 months 23hrs a day. Night bracing from July 08-present. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.htmlFrom: <candice_welch85@...>infantile scoliosis treatment Sent: Tue, April 13, 2010 10:21:27 PMSubject: Great News! Hi Everyone, Over the last few days Thaddeus has started crawling!!! ( well in his own way) he is kind of draging himself across the carpet face and all LOL. but he is moving. and i can see he is getting better day by day. I am soo happy and proud of my little man. We are getting on our way to have him walking. Its a good day Mommy to Thaddeus 14 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 This is great news. Go Thaddeus. He will be walking soon. Joanmom to Hayden 339 degrees down from 62Cast number 4Treated at ish Rite Hospital Dallas, TX From: <candice_welch85@...>infantile scoliosis treatment Sent: Tue, April 13, 2010 10:21:27 PMSubject: Great News! Hi Everyone, Over the last few days Thaddeus has started crawling!!! ( well in his own way) he is kind of draging himself across the carpet face and all LOL. but he is moving. and i can see he is getting better day by day. I am soo happy and proud of my little man. We are getting on our way to have him walking. Its a good day Mommy to Thaddeus 14 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 , Thats awesome news!!! So glad hes getting it. It wont be long now! Get your running shoes ready!!! From: <candice_welch85@...>Subject: Great News!infantile scoliosis treatment Date: Tuesday, April 13, 2010, 10:21 PM Hi Everyone, Over the last few days Thaddeus has started crawling!!! ( well in his own way) he is kind of draging himself across the carpet face and all LOL. but he is moving. and i can see he is getting better day by day. I am soo happy and proud of my little man. We are getting on our way to have him walking. Its a good day Mommy to Thaddeus 14 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 Yeahhhhh and Thaddeus!!!!!!!!!!!!! Thats so great! As I mom of a low tone child, I can truly imagine how thrilled you must be!!!Lynn From: <candice_welch85@...>Subject: Great News!infantile scoliosis treatment Received: Tuesday, April 13, 2010, 8:21 PM Hi Everyone, Over the last few days Thaddeus has started crawling!!! ( well in his own way) he is kind of draging himself across the carpet face and all LOL. but he is moving. and i can see he is getting better day by day. I am soo happy and proud of my little man. We are getting on our way to have him walking. Its a good day Mommy to Thaddeus 14 months Canada Toolbar : Search from anywhere on the web and bookmark your favourite sites. Download it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 Go Thaddeus!!! Heidi, Bexon's Mommy, (2 and a half years old, in 6th cast from Salt Lake City Shriners, currently down from 61 degrees to 25 in cast)From: <candice_welch85@...>infantile scoliosis treatment Sent: Tue, April 13, 2010 8:21:27 PMSubject: Great News! Hi Everyone, Over the last few days Thaddeus has started crawling!!! ( well in his own way) he is kind of draging himself across the carpet face and all LOL. but he is moving. and i can see he is getting better day by day. I am soo happy and proud of my little man. We are getting on our way to have him walking. Its a good day Mommy to Thaddeus 14 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2010 Report Share Posted April 15, 2010 Yay!!!! That's a GREAT day!!!!- Noelle's mommy, 3 years oldRochester NYCasted 8 times for 1 1/2 years and in first brace!reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III From: <candice_welch85@...>Subject: Great News!infantile scoliosis treatment Date: Wednesday, April 14, 2010, 3:21 AM Hi Everyone, Over the last few days Thaddeus has started crawling!!! ( well in his own way) he is kind of draging himself across the carpet face and all LOL. but he is moving. and i can see he is getting better day by day. I am soo happy and proud of my little man. We are getting on our way to have him walking. Its a good day Mommy to Thaddeus 14 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2010 Report Share Posted May 13, 2010 Yes she is:-) > > > > > Way to go ! A real achievement in the world of thyroid treatment? > > Is this a GP? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 http://www.fcc.gov/Daily_Releases/Daily_Business/2010/db1116/DOC-302803A1.pdf<ht\ tp://www.fcc.gov/Daily_Releases/Daily_Business/2010/db1116/DOC-302803A1.pdf> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 Wonderful news! Glad to see a culturally Deaf individual heading a managerial position. ; problemci From: justagram14@... Date: Tue, 16 Nov 2010 12:39:50 -0700 Subject: Great News! http://www.fcc.gov/Daily_Releases/Daily_Business/2010/db1116/DOC-302803A1.pdf<ht\ tp://www.fcc.gov/Daily_Releases/Daily_Business/2010/db1116/DOC-302803A1.pdf> Quote Link to comment Share on other sites More sharing options...
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