Guest guest Posted April 2, 2011 Report Share Posted April 2, 2011 and All, Oh you just made my day by remembering and asking! Thank you all so much for your prayers this past week. I felt soooo much lighter and definitely more positive going into Aubrey's IEP knowing so many of you posted such warm thoughts and well wishes! Our family is soooo Blessed! This is only the first of several meetings we will need to cover all we (Advocate and I) are concerned about since her transition to middle school this past August. Just signed re-eval papers, too, so this year's IEP process to discuss evals and how it will affect IEP will become more intense in 60 days or so...it's going to be a long haul... Prayers WERE answered in that Aubrey's team was unexpectedly positive (had to call District Office for additional support)...Aubrey, 12, and her " Skills Trainer from Heaven " were actually at the table and we were able to have Aubrey self-advocate a bit and hear some very positive words regarding Aubrey's interaction with her typical peers which gave me hope after two days of observation when I witnessed none...Principal invited me to come to school more often so that I could see for myself. Wow! Positive gains to report is that we were able to secure a trial period where she will be able to participate in mainstream homeroom (school notices never come home via SPED classroom) and also school will now post their daily bulletin ON-LINE for all parents esp SPED families. Aubrey will get to repeat BEGINNING BAND as her elective next year (and hopefully WE will all get the modifications right this time!) Good beginning...we remain cautiously optimistic as we have yet to deal with the unbelievable ethics violations by DOE personnel...all in good time...staying calm and positive...next meetings mid-April, sooooo continued prayers are appreciated! I MUA! Desi ________________________________ To: Sent: Sat, April 2, 2011 1:01:56 PM Subject: Desi Hi Desi, Would love to hear how your meeting went Thursday. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2011 Report Share Posted April 4, 2011 <<Aubrey had a PIC line -extremely aggressive I V antibiotic for three weeks which FINALLY knocked out her chronic ear infections>> Hi, Everyone...Desi....to be honest, I was scared today.....first time in a long time. He's always had funky, *off the wall* ailments, but the new ENT doc said today that he would have to clean the bone out and put him in the hospital for a week on IV's....just like when he had those bouts of pneumonia. With the MBL deficiency, Gareth's body doesn't know to attack bacterial infections. I even asked the doc *If Gareth was a normal kid, no DS or Autism, would he be in pain?* He told me that, initially, he would be in a lot of pain (acute infection) but now, it would be a constant dull ache because he's been on antibiotics long enough to *take the edge off.* I've been dealing with these wicked behavioral issues for months now.............gee, I wonder why?!?!? We have to go back next Monday to the ENT and he will give us the report from the CT scan done this Friday. Any prayers would greatly be appreciated!!! Take care, Everyone. Margaret Mom to Gareth, 22 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2011 Report Share Posted April 4, 2011 Dear Margaret, You and Gareth certainly will have my prayers tonight and in the coming days.... Annie ehavioral issues for months now.............gee, I wonder why?!?!? We have to go back next Monday to the ENT and he will give us the report from the CT scan done this Friday. Any prayers would greatly be appreciated!!! Take care, Everyone. Margaret Mom to Gareth, 22 y/o, DS/ASD/OCD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2011 Report Share Posted April 4, 2011 Aw, geez, Margaret, poor Gareth just doesn't get a break from the crud! I am so sorry to hear about this latest nasty turn. And that you are back on the roller coaster of figuring out what is going on and then wondering what the treatment is going to do to him. I was just getting ready to check the list and ask you how he was feeling after your reports from the past week. Prayers coming your way. This is so lousy! Please keep us posted. Hugs, Beth > > <<Aubrey had a PIC line -extremely aggressive I V antibiotic for three > weeks which FINALLY knocked out her chronic ear infections>> > > Hi, Everyone...Desi....to be honest, I was scared today.....first time in a > long time. He's always had funky, *off the wall* ailments, but the new > ENT doc said today that he would have to clean the bone out and put him in > the hospital for a week on IV's....just like when he had those bouts of > pneumonia. With the MBL deficiency, Gareth's body doesn't know to attack > bacterial infections. I even asked the doc *If Gareth was a normal kid, no DS > or Autism, would he be in pain?* He told me that, initially, he would be > in a lot of pain (acute infection) but now, it would be a constant dull ache > because he's been on antibiotics long enough to *take the edge off.* I've > been dealing with these wicked behavioral issues for months > now.............gee, I wonder why?!?!? We have to go back next Monday to the ENT and he > will give us the report from the CT scan done this Friday. Any prayers > would greatly be appreciated!!! > > Take care, Everyone. > Margaret > Mom to Gareth, 22 y/o, DS/ASD/OCD > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 is it MRSA of the ear or sinus? Zahn mtzahn@... > <<Aubrey had a PIC line -extremely aggressive I V antibiotic for three > weeks which FINALLY knocked out her chronic ear infections>> > > Hi, Everyone...Desi....to be honest, I was scared today.....first time in a > long time. He's always had funky, *off the wall* ailments, but the new > ENT doc said today that he would have to clean the bone out and put him in > the hospital for a week on IV's....just like when he had those bouts of > pneumonia. With the MBL deficiency, Gareth's body doesn't know to attack > bacterial infections. I even asked the doc *If Gareth was a normal kid, no DS > or Autism, would he be in pain?* He told me that, initially, he would be > in a lot of pain (acute infection) but now, it would be a constant dull ache > because he's been on antibiotics long enough to *take the edge off.* I've > been dealing with these wicked behavioral issues for months > now.............gee, I wonder why?!?!? We have to go back next Monday to the ENT and he > will give us the report from the CT scan done this Friday. Any prayers > would greatly be appreciated!!! > > Take care, Everyone. > Margaret > Mom to Gareth, 22 y/o, DS/ASD/OCD > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2011 Report Share Posted April 5, 2011 Not MRSA. Desi McKenzie - Re: Desi is it MRSA of the ear or sinus? Zahn mtzahn@... > <<Aubrey had a PIC line -extremely aggressive I V antibiotic for three > weeks which FINALLY knocked out her chronic ear infections>> > > Hi, Everyone...Desi....to be honest, I was scared today.....first time in a > long time. He's always had funky, *off the wall* ailments, but the new > ENT doc said today that he would have to clean the bone out and put him in > the hospital for a week on IV's....just like when he had those bouts of > pneumonia. With the MBL deficiency, Gareth's body doesn't know to attack > bacterial infections. I even asked the doc *If Gareth was a normal kid, no DS > or Autism, would he be in pain?* He told me that, initially, he would be > in a lot of pain (acute infection) but now, it would be a constant dull ache > because he's been on antibiotics long enough to *take the edge off.* I've > been dealing with these wicked behavioral issues for months > now.............gee, I wonder why?!?!? We have to go back next Monday to the ENT and he > will give us the report from the CT scan done this Friday. Any prayers > would greatly be appreciated!!! > > Take care, Everyone. > Margaret > Mom to Gareth, 22 y/o, DS/ASD/OCD > > Quote Link to comment Share on other sites More sharing options...
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