Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 : I would think that since you are on Enbrel, your body is not able to produce the allergic (over)reaction that it used to...your immune response has been repressed by the Enbrel. We have noted that Rob's allergies are much less active since being on the MTX and azulfidine. And yes, you are special!! and Rob 15 Spondy On Tue, 29 Jun 2004 02:13:18 EDT bncknwurnumber@... writes: Has anyone experienced a loss of an allergy since a JRA diagnosis. Growing up I was highly allergic to bee's.. severe reactions.. many trips to the ER.. On Sunday I got stung by a bee with absolutely no reaction.. I found it strange since Bee sting allergies typically get worse with every sting.. Has this happened to anyone? Am I just special.. did I outgrow it.. I don't get it.. (poly jra and spondy, 19) PS. Thanks Helen for the kind words in my guestbook I really appreciate it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 : It was so nice to get to meet you at the conference. Rob enjoyed being one of your roomies; I said earlier that you and Uncle Rusty should get an award for putting up with two teenagers who are slobs! I can't wait to see the pictures you took. I plan to send you some doubles of ones I took, would you be able to post them in the album as well? Also, instead of printing copies of your pics off, could I order some from you? I have a lousy computer and printer, and I would like professional quality prints. Just let me know prices, etc, ok? Thanks for all you do for kids with JRA!! and Rob 15 Spondy On Wed, 28 Jul 2004 23:19:40 -0000 " " <bionicmaninmt@...> writes: Hello everyone, Got back home safe and sound. All ready looking forward to next year's Conference in Rhode Island. Just want to let you all know that was in the group picture I should have it back in a few weeks and I will post a internet copy here, if u want one to print out I will send u a much larger file to your email address. The rest of the pictures from San Deigo will be posted to a photo album. And will give the link to those who want it, that will be about 6 weeks from now, takes me a bit of time to do the work needed to post them online. It was great meeting you all there. Until next time take care everyone. I hope to meet many more of you next year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 : Thanks for the prayers...they are appreciated and mean so much. and Rob 15 Spondy On Mon, 30 Aug 2004 11:52:03 -0500 " Tepper, Michele " <MTepper@...> writes: - sending out prayers for you and Rob. Glad you got the results and the med seems promising. I am sorry Rob has this new disease going on. Wish I could be of more help, as you know how I feel about and Rob being so similar, just know that I am thinking of you and I am praying for the best outcome for Rob. Know that all of us are here whenever you need to vent or whatever. Michele ( 17, pauci & spondy) Rob's renal biopsy results/long Rob had his followup today to receive the renal biopsy results. The nephrologist thinks Rob has Alports syndrome. If you look it up on the Internet it can be quite frightening. Some sites I read said it always leads to renal failure in males. Today the nephrologist was trying to be as reassuring and upbeat as possible. I was having a hard time deciding whether he was just trying to give us hope...I don't know. Bottom line: Rob's BUN and creatinine are NORMAL. That is awesome news. The bad news, there is irregularity of his glomerular basement membrane. Instead of being smooth, there are lamellations or cracks in it. This is indicative of Alports. Today, his urine had gross hematuria/visibly bloody. 2+ blood in his urine, protein and casts. The protein is the bad part. The protein is what causes the kidney damage. So we are going to treat that with Cozaar. It will lower the protein, the blood pressure (Robs is borderline high and that is a sign of kidney disease) and it can actually REBUILD the damaged areas of kidney! So this is wonderful news. Years ago they had nothing to treat it. Alports is incurable but if you can control the protein spillage you can control the disease. The only way to really diagnose this is with genetic testing that costs $3000-4000 dollars and of course insurance wont' pay for it because it is not always reliable. So we are going on the biopsy results that he does have it. He said that there are many different variations of Alports and some are severe, some are not. Some people lose their hearing and sight. They will keep a watch on that. There is some genetic research and they are hoping someday for gene therapy. The thing is, it is relatively rare, affects only 2 people in 20,000. Some can start out mild like Robs and stay that way for years, then go to renal failure. Some are very aggressive right away. So he will have to be very carefully watched. Labs to be repeated in 2 weeks and he wants to see Rob in 2 months, that will be the same day we see rheumatology. Rob although he was in the room didn't really get all that we were talking about. Dr. D. was very careful around Rob about the wording he used. The words end stage renal disease, dialysis etc were never mentioned. Rob as always was still the happy go lucky guy and he had very few questions. I guess little by little he will come to know what all this means. I am just worried about his eyesight and hearing. Dr. D didn't mention it, and it was impossible to ask with Rob being in the room, but I think I am going to get him a hearing test just as a baseline so we will know if there are changes. I am going to get the pediatrician to order it. Dr. D treats many Alports kids apparently so we are in the best place. He was upbeat and reassuring. This is just very hard to hear and to take. Thanks you guys for all your support and prayers. Please continue to pray for Rob. and Rob 15 Spondy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 : Hope that the UGI goes well for tomorrow. I can't believe how tall he is!! He is definately very thin, though. I can't remember, my memory is so bad lately, but is he seeing a GI specialist?? You know us moms and our nagging feelings are usually right, unfortunately, we know our children the very best. Last year when Rob very first started with the bloody urine, I had this ominous feeling...even when they just kept telling me they'd just watch him.. I was waiting for the other shoe to drop.. whoa, that sounded depressing...didn't mean to go off on that tangent! Keep us posted on ok? I was thinking of him when I was cleaning my car this morning...I am NOT a good detail man! and Rob 15 Spondy On Wed, 15 Sep 2004 12:33:17 -0500 " Tepper, Michele " <MTepper@...> writes: Glad to hear Rob's pain is down! It is good he is tolerating the med well, and we hope right along with you that things go well. I hope when you go in October there is a change to the positive for Rob. To quickly answer your question about he is maintaining as of right now, however he is 6'3 " at the last visit (although we believe he grew again and is closer to 6'4 " ) but only 145 lbs still. His appetite is up and down lately, but he does still eat well in my opinion. I am just thinking that for some reason his body is not processing the food right. I could be wrong of course, its just this nagging feeling I have. The drs said that while growing taller should cause him to thin out, he should not be losing weight while gaining height. When the JRA started he was 172 lbs, but only about 5'8 " . So we shall see what if anything this test can show. Enjoy those bike rides!! Michele Rob's 'Monday' update... Ok, here goes... Rob's pain level is continuing to drop, his swelling in his knees is almost non-existent, his energy level is increasing, and he (or should I say we) are riding bikes daily! Yes, he says its time I got in shape since my RA is in medicated remission It is such a joy to see him emerging from his pain. I didn't realize how UN-animated and subdued (at least for Rob) that my child was, and how little activity he did, until Enbrel started working. He rated his pain yesterday as a '3' (down from 4 or 5 last week), the usual hips, knees, and back pain. We realize he may never get total relief, and that damage has probably already been done, but WOW...how awesome to see him obviously feeling and doing soooo much better. Thanks to all you guys for all your support! Oh, I did get final biopsy results from Rob's nephrologist. One of the findings clearly points to Alports, but some of the others don't. So they are still about 95% sure. They are talking about doing some further testing. The nephrologist is also going to consult yet another expert in the field about Rob's case, and I faxed him a release form today so he can discuss the case. Rob is tolerating the Cozaar just fine, and we will go back in October to recheck his urine and see if it is making any difference. We are just hoping that if he goes into renal failure, that it is many years before it happens. We have hope! and Rob 15 Spondy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 I take two 25 mg shots a week. Which is soon to be the 50 mg shot. I get the full adult dossage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 ; So how many ml's is the shot of Enbrel you take? 2 or 1? Rob takes 7 shots a week of growth hormone plus the 2 of Enbrel each week, so 4 less a month would be very nice. We are anxious to talk to the rheumy about switching. I know you were very relieved to know that you didn't have a tumor...what a scare! Be sure and let us know about the surgery date, and also to have a WONDERFUL birthday on Friday! and Rob 15 Spondy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 --... I hope that the surgery is a complete success... i will be praying along with everyone on the list for a speedy recovery for you. Heres an early birthday wish from Nick and myself... have a super day and enjoy yourself... Hugs Helen and (7,systemic) - In , bncknwurnumber@a... wrote: > I take two 25 mg shots a week. Which is soon to be the 50 mg shot. I get > the full adult dossage. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2004 Report Share Posted December 27, 2004 : I hope that you had wonderful holidays, too! and Rob 15 Spondy PS Rob has nephrology and rheumatology appts tomorrow in Cincy (1-1/2 hour drive or so...hope that their streets are as clean as ours have gotten!) On Mon, 27 Dec 2004 11:01:23 -0600 " Tepper, Michele " <MTepper@...> writes: Wow, that is a miracle!! Glad your kitties are home. Happy Holidays to you and yours, Michele OUR CHRISTMAS MIRACLE Wednesday, at the start of our onslaught of 18 inches of snow and freezing rain, our kitties got out. Sonic came home about 17 hours later, hypothermic and in bad shape. We have gotten him slowly better, and he is now fine. However, the last 14 hours or so we have had sub-zero weather. We figured after another night outdoors last night, our poor little Boo Boo was most likely not going to be returning home. We got home this evening around 10, and our Princess Boo Boo Kitty came home! Surviving over 60 hours in the outdoors, and the sub zero weather. She was starving and tail slightly icicled, but in amazingly good shape. Oh, if she could only talk, the tales she'd tell! We are feeling truly blessed that God saw to bring our precious kitty home. I wish all of you Christmas miracles. We are looking forward to a happy healthy 2005, with dreams of cures for JRA and kidney disease too! I love you all. and Rob 15 Spondy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 I just got this message today (Tues) so I am hoping that things are cleaned up for you and the appts are going well. Let us know, Michele OUR CHRISTMAS MIRACLE Wednesday, at the start of our onslaught of 18 inches of snow and freezing rain, our kitties got out. Sonic came home about 17 hours later, hypothermic and in bad shape. We have gotten him slowly better, and he is now fine. However, the last 14 hours or so we have had sub-zero weather. We figured after another night outdoors last night, our poor little Boo Boo was most likely not going to be returning home. We got home this evening around 10, and our Princess Boo Boo Kitty came home! Surviving over 60 hours in the outdoors, and the sub zero weather. She was starving and tail slightly icicled, but in amazingly good shape. Oh, if she could only talk, the tales she'd tell! We are feeling truly blessed that God saw to bring our precious kitty home. I wish all of you Christmas miracles. We are looking forward to a happy healthy 2005, with dreams of cures for JRA and kidney disease too! I love you all. and Rob 15 Spondy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2005 Report Share Posted August 1, 2005 As long as we're sharing quotes. I like this old Marine motto. "Pain is weakness, leaving the body." G'dayI've found a quote that I think sums up our wonderful brave and beautiful kids!Thought I'd share it.JoBayly, 3, extended oligo"Courage doesn't always roar. Sometimes Courage is a quiet voiceat the end of the day saying, 'I will try again tomorrow'."unknown*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^*^Owner/Moderator, Australian online support group for Juvenile Arthritisjra-australia/Check out our online Celebrity Charity auctionhttp://www.ausauction.comAnd meet the Fletchers athttp://www.trikearoundaustralia.com.au Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2006 Report Share Posted April 11, 2006 My guess would be that it is more likely the arthritis itself - particularly if her symptoms have been active, that is slowing Audrey's growth. My son has been in " growth delay " for some time - within a few months of beginning on steriods - which do delay growth. He has been on steriods for nearly 5 years - at different doses - up and then down - then back up with a flare. During most of this time he has had little to no growth - from age 3 to 6 he had an inch and a half growth total for the 3 years - children in that age group generally grow an average of 1.5 inches a year - He has had about an inch growth - maybe 1.5 inches in the last year - which is cause for celebration at our house His steriods have been at a low 3mg for this time period, and I am sure that is why he's had some growth. He height doesn't even register for his age on the growth charts now & hasn't since about 6-8 months after diagnosis. Robbie has been on methotrexate for a year as of this past January - and all of this recent growth is from that time period. Cyclosporine can also delay growth - another med my son has been on since soon after diagnosis. I hope things improve for Audrey quickly! Val Rob's Mom (8,systemic) I have two questions. 1. Audrey has been on Methotrexate since October 2004. In this time she has fallen off of her growth curve - she has always averaged around the 50th percentile for height, and now is down to the 13th percentile. Her rheumy says that methotrexate doesn't stunt growth, but has this happened to anyone else? 2. Audrey just started the enbrel. How long do they usually remain on it? Thanks for your help, -------------------------------------------------------------------- mail2web - Check your email from the web at http://mail2web.com/ . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2006 Report Share Posted June 5, 2006 : Thank you so much for your wonderful post...its a keeper! I'm going to print it out for Rob. Take care. and Rob 17 Spondy On Mon, 5 Jun 2006 19:29:18 EDT thewalkers1989@... writes: Just have to chime in here as an adult " survivor " of this " awful " disease. JRA, can be and often is an awful disease - pain, meds, surgery, not being able to be " NORMAL " etc BUT JRA (and all arthritis forms) do some good things - YES I said good things. I am 36 and have had JRA since I was 3 - back during the " old " treatments. I DO NOT kow what life is like without JRA. BUT JRA has 1. caused me to enjoy every pain free day 2. Helped me to try things that I otherwise might not have or if I'd been normal taken them for granted. 3. Helped me to be a more caring and compassionate person towards all people - normal or not 4.Because of my JRA, I waited 11 yrs after we got married to have kids - had we have not waited I would NOT have my darling daughter Destiny and we would NOT have been ready to have kids earlier in our marriage 5. JRA has helped me to know there are lots of people in a lot worse shape than me, and believe me I am one of the " worst " case scenarios of JRA 6. JRA helps me put things in priority - even though I do tend to over-do 7. JRA has led me to this group of wonderful caring people who live with this disease themselves or watch a child or other family member deal with it. As a child, I was not outspoken, but I wish I could've told people these things: 1. I may not be normal - but I am the best ME I can be 2. I may not be able to do things like other kids - but I want to try and do what I can - just help me not to do something overly stupid and hurt myself 3. Give me hope, encouragement, a swift kick in the butt when I need it, push me when I need it, but give me LOVE most of all. I had brothers who were 13 and 15 yrs older than me - and YES they still felt jealous of all the attention I got. I had parents who did the very best they could do with what they had to do with - that is ALL any kid with this disease can ask. NO parents are perfect, even if you have " normal " kids. Be the best YOU can be and I promise - your kids will grow up, have a wonderful life, and be outstanding citizens - even with this disease. The old saying " what don't kill us makes us stronger " really does apply to kids/YA/adults with RA/parents of kids with RA - we are some of the strongest people I know. Sorry to ramble, just had these things on my heart. I have a 5 yr old who is 'normal " and I feel guilty as a parnet for the things she has to do to help Mommy - but I know it will help her to be a more caring/considerate person in the long run. I regret I can't teach her to swim, or play Tball with her - but I CAN read to her, play dress-up with her, do crafts, and spend time with her and most of all Love her - so I do the best I can do. love, prayers, and blessings (age 36 - poly since age 3) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2006 Report Share Posted June 21, 2006 : Thanks for the prayers for Tree. She knows she can rely on this list!! I'll post something as soon as I hear any news. Please also let us know what you find out about Aundrea tomorrow. I'm on pins and needles as I know you must be. I'll be praying for her. and Rob 17 Spondy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2006 Report Share Posted June 22, 2006 Hi , You are right, this two week wait has felt SO long and I have been anxious. I keep telling myself that there is no way that this is lupuas..It just seems like it is so rare in kids, even more rare than JRA. Yet, Aundrea keeps having new symptoms and they are worrying me. She has so much fatigue. Has started taking two hour naps during the day and is still exhausted by bedtime and even sleeping in far later than she normally would...In addition to that the shortness of breath continues and more complaints about feeling dizzy. We were in Walmart yesterday and shopping for posters and stuff to decorate her room. Her joints started aching and then she said she just felt so dizzy that she needed to go sit down. She started getting a rash on her face and after we sat down she said " I will close my eyes and you tell me if I am moving " . Of course she wasn't. She said it feels like everything is just spinning all around her. I am so glad that tomorrow is the appt..I would have called much earlier this week to get her in, but I figured they really just needed to have all those lab tests back in before we know what to do next. Thanks for thinking of us and I'll let you know what happens tomorow. P.S. Lots of prayers today for Tree and family...I know she will be glad when this procedure is all behind her. (Aundrea 10 systemic) > > : > Thanks for the prayers for Tree. She knows she can rely on this list!! > I'll post something as soon as I hear any news. > Please also let us know what you find out about Aundrea tomorrow. I'm on > pins and needles as I know you must be. I'll be praying for her. > and Rob 17 Spondy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 Teri, There are several Virginia families attending conference. Will you be there? Liz _____ From: [mailto: ] On Behalf Of Terri Berube Sent: Thursday, July 06, 2006 3:10 PM Subject: Do you know anybody who will be coming from VA?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2006 Report Share Posted July 6, 2006 All of us are coming we are so excited. Look forward to see you all there. I may have missed it are you all meeting anywhere? Time? Day? Thanks, Terri Do you know anybody who will be coming from VA?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 Teri, There's been nothing arranged. I just know there are several families because I was talking to folks at the AF office last week. I'm just planning to keep my eyes open for VA on those nametags. I do know that three or four families from the Fredericksburg event will be there along with several new faces. Liz _____ From: [mailto: ] On Behalf Of Terri Berube Sent: Thursday, July 06, 2006 4:28 PM Subject: Re: All of us are coming we are so excited. Look forward to see you all there. I may have missed it are you all meeting anywhere? Time? Day? Thanks, Terri Do you know anybody who will be coming from VA?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 , She really was just diagnosed last week. I worry that Enbrel would not be a choice for her as I have read here it is rough on the immune system? She already has a primary immune deficiency, for which she usually receives infusions. Does MTX cause the same side effects? I really am not familiar with any of the meds except the NSAIDs, as this is all so new to us...we were always told we were 'just' dealing with tendonitis. snooksmama@... wrote: : I have to write quickly, I'm running late for work. ROb does have ankylosing spondylitis, or jspa. He started with Naproxen, they then added azulfidine, dropped that, then went to methotrexate, and finally, to Enbrel. This has helped him the most. He has recently gotten really into exercising, and despite the fact that he still has morning pain and stiffness, he has regained all the lost ROM in his hips that he lost. For a period of about 18 months, he was on and off crutches due to his hips being affected. Rob can no longer take any of the NSAIDS since he was diagnosed with a kidney disorder. He is HLA B27 positive. I can write more later tonight if you have more questions. How long has she been diagnosed and are they considering moving on to other meds? The biologics (especially Enbrel) works very well with spondy. MTX helps too. and Rob 17 Spondy , I have been noticing in your signature, that Rob has Spondy...does he have ankylosing? What is the difference between ankylosing spondy and jspa, do you know? What has helped Rob? What hasn't helped him? Sorry for the questions....I haven't noticed anyone else on here whose child has spondy except Chris...Michele first suggested that might be what has...I e-mailed Michele but not sure it went through and remember she has not been feeling well from her accident recently. is seronegative, but the rheumy still feels pretty sure...as all of her inflammation occurs low back, hips, knees, bottom of feet at pts of insertion for tendons. Any info, suggestions, anything would be appreciated. Right now she is on Mobic and the rheumy just doubled her dose so do not know yet if it will help..previous dose did not help much. Does Rob do much PT? Thank you, (, 16, CVID, spondy?, migraines, fibro) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2007 Report Share Posted March 11, 2007 , I hope you are feeling a bit better? is doing a little better, thanks to her IVIG...her fever is finally gone but pain is still the same. I worry because her stomach has been hurting her for a couple weeks (she just informed me...you know teens) and unless it could be part of the illness, it would have to be the Mobic...she was switched to Mobic because Anaprox was giving her severe stomachaches after months of use. I don't know what her rheumy might choose to do...she is very conservative. We have not had another follow-up since the diagnosis and increase of Mobic; her rheumy has been out of town, and has been finishing her program for the anorexia. She comes home Monday and goes to a partial day program for several weeks so non-urgent drs appts and PT are still on hold. I hope Rob's sinus infection is better - they can be tough to get rid of. You said your hubby's birthday is May 26? 's is May 25....good month! Praying you feel better soon. (, 16, cvid, spondy, fibro, migraines) snooksmama@... wrote: : Yes, I have RA. I was diagnosed about 4 years ago. My mother was pretty severe with it, starting in her 40's, so its the same pattern she followed. Thanks for your thoughts and how is doing the last few days? Have you found out if she would be able to take any of the biologics, with the CVID? That has got to make the process of treatment frustrating, dealing with more than one illness. Rob's only limitation on his meds is no NSAIDS, due to his kidney disease. However, I think that they would help him take the edge off his pain. Take care, and keep us posted on . (If Rob had been a girl, he likely would have been . It was my hubbie's grandmother's name) and Rob 17 Spondy , sorry to hear you are in so much pain...I did not know you were afflicted as well. Rob sounds like he is holding his own, with his job, workout, and upcoming graduation. You must be proud of him! I hope that you are feeling better soon and that your computer problems resolve... (mom to , 16, CVID, spondy, fibro, migraines) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 ,'s ankles were a new development this past week...with spondylitis, I didn't know if that was the norm. yes, her rheumy and immuno work closely together...when she sees one, she sees the other - their request...they communicate, and offer opinions, yet leave the final word to the respective specialist. Her rheumy is just so conservative, so we will see what happens at her next appt. It's just frustrating, watching her high school years slip by...she has given up/lost so much. Next year is her senior year and she does NOT want to miss it. I am hoping her new pain mgmt dr might be a good facilitator - he is at Children's L.A. and I am impressed with him so far.So, is it Rob who is wanting a tatoo? My 27 year old son has some...he says they are art...he is a handsome boy...I tell him it hurts me to see him do that to his beautiful skin...his wife hates the tatoos, and that does not affect him, so what I say isn't going to either, but I tell him anyway...I figure I've earned the privilege = )snooksmama@... wrote: :Chiming in here... Since you know Rob has spondy, thought I would relate YES Rob's ankles and heels have bothered him. Heel pain is another hallmark sign of the ankylosing spondylitis or spondyloarthropathy. and Rob 17 Spondy PS Could you get her rheumatologist and immunologist to put their heads together??? Michele,alas, that is what I thought I understood from the forum and my concern; already has immune deficiency for which she receives the infusions...her rheumy is going to be reticent to give her meds that would further affect her immune system. I just don't know what else is available? The fact that 's back is now bothering her so much concerns me... also, did Chris' ankles or heels ever trouble him?Thanks, Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2007 Report Share Posted May 30, 2007 ,how was Rob's graduation? Did you cry a river of joyous tears? You must feel so proud!How is the testing going? I know you have a lot on your plate at this time, but please keep us posted as you can, okay? Continuing to uphold you in prayer, Don't be flakey. Get for Mobile and always stay connected to friends. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2007 Report Share Posted July 20, 2007 WOW Donna that brought tears to my eyes. Thank you! love, prayers and blessings , Greg, Destiny and Daneual Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2007 Report Share Posted July 21, 2007 Hi Donna: I am so sorry to hear of Dominic's passing. His mom sounds like one beautiful soul. How fortunate they were chosen to be mother and son. The world has lost one inspirational and special young man. My thoughts are prayers are with , you and your families. Take care. Patty P.S. That's one of my favorite poems...........have it framed and on my wall too. Get a sneak peek of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2007 Report Share Posted July 22, 2007 Wow...Both of those made me want to cry....Terri..... This has got to be one of my favorite things Erma Bombeck has written and I think she pretty much hit it right on the head. Today I held my best friend as she wept and wept over her son. I have known all of my life and at age 19 she became a single mom to Dominic. Dominic was born very prematurely and suffered many problems as a result of cerebral palsy and secondary conditions, including arthritis. He was in the hospital the whole first year of his life and has been in and out of hospitals enduring sickness, therapies, surgeries, tubes, etc for all of his 21 years. On Sunday Dominic took his last breath. His smile and laughter will forever reside in my memories. He brought the same sort of smile to all who were privileged to meet him. His mother, my best friend (sister in life), never left his side. From his first breath to his last she was there. She literally made her son her life. when asked to go to lunch and let his grandpa watch him she would decline. When asked to get a flltime aide she declined saying "I am his mom". When assisted living came up, she said, "he** no". When asked to place him in special schools she NO! On May24th I was so proud when Dominic accepted his high school diploma at graduation and I know his mom was ecstatic. She fought for years for him to be in public school and he was. She changed diapers for 21 years. She fed him for 21 years. No questions, just love! To all of those special moms........hugs! Donna (with apologies for being so emotional) Some Mothers Chosen By GodBy Erma BombeckMost women become mothers by accident, some by choice, a few by social pressures and a couple by habit.This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger."Armstrong, Beth, son. Patron saint, .""Forrest, Marjorie, daughter. Patron saint, Cecelia.""Rudledge, , twins. Patron saint...give her Gerard, He's used to profanity."Finally, He passes a name to an angel and smiles, "Give her a handicapped child."The angel is curious. "Why this one, God? She's so happy.""Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel.""But has she patience?" asks the angel."I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world and that's not going to be easy.""But Lord, I don't think she even believes in you."God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."The angel gasps, "Selfishness? Is that a virtue?"God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child who is less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word." She will never consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or sunset to her blind child, she will see it as few people ever see my creations."I will permit her to see clearly the things I see....ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.""And what about her patron saint?" asks the angel, his pen poised in mid-air.God smiles. "A mirror will suffice." AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.9/907 - Release Date: 7/18/2007 3:30 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2007 Report Share Posted October 19, 2007 Hi ,the usual 'wait and see' for the meds does get discouraging, doesn't it? It is most difficult to see still hurting and swelling - I think it worries her she will never get relief from this awful arthur!I cannot imagine dealing with tornados and I hope the weather does not make it difficult for Rob to get home for the weekend - I hope all the chaos with his schooling calms down and perhaps he will be more accepting of some of the services offered through the college...it's a difficult age, isn't it? They want to be so independent, and do not want anything that sets them apart from their peers in any way...How is Rob feeling physically? You said your appt is for Oct 30? How are you feeling meanwhile? Is all of the pred you took still offering you any relief, I hope? I know you are looking forward to your time with Rob this weekend and I hope that you have some wonderful family time together. Please keep us posted that you are okay with all the tornados passing through! (, 17, poly)snooksmama@... wrote: :It sounds like the usual 'wait and see if these meds work or not" that is so typical. I think that this was the most frustrating part of Rob's journey, was having to give this med or that med so much time to work. It used to drive me crazy. I'm so glad, however, that 's doctors seem to be working together and consulting one another...when you are dealing with more than just one issue it is so important. I hate to hear that you are still not feeling well. I hope that you get more answers on November 7. I just talked to Rob and he is coming home for a visit on Saturday. He was studying so our conversation was quite short. Saturday can't come soon enough! and Rob 18 Spondy Re: Insurance - *#$ & !*#($ > and venting> @group s.com> > > Sorry - I know I am waaaaaay behind in responding to e-mails > > this week as my hands have been awful....but my dander is so > up > > right now, I had to vent or burst...> > > > my husband has been pushing me to verify out insurance > coverage > > for as she will be turning 18 late May and we don't > want > > any surprises. Well, she is covered til 19, then > til 25 IF > > she is a full-time student. BUT, let her be even > 1/2 > > credit short, and she will no longer have insurance... .no > > exceptions.. ..does not matter what the reason, she would be > > instantly dropped, permanently. > > > > Don't our kids (and us parents) have enough worries? > > Watching our kids suffer, miss out on "normal" stuff, alter > life > > plans, struggle to keep up, take med after med, and still have > > daily pain and fatigue?> > > > She feels out of place at high school, as all of her > > friends are self-focused and she is in such a different > > place...one boy kept asking why she is absent so must and she > > finally told him..the first and only she has told...kids are > > writing a controversial essay for english - most chose > abortion > > or lowering the drinking age...my child is writing > (all > > her idea) on insurance companies and their exclusionary pre-> > existing clauses..she is 17 and her mind is thinking ahead > about > > these things. Instead of parties on the weekends, she is > looking > > to volunteer for a group that provides fun activities for > > children with cancer and their families. But, right now, > > it is a lonely place to be.> > > > Anyway, sorry, off my soapbox there...it just seems such a > major > > injustice that these kids who are ill and are trying so hard > to > > accomplish some normalcy with their life (e.g. achieve college > > degree), may end up jeopardizing their healthcare, but they > have > > no choice because the 12 units is they only way to > > maintain the healthcare. > > > > Have any others faced this, where their child just could not > > handle the full-time credits? What options are out > > there? What did you find you could do? If her > > disease was under control, I might not feel so worried....just > > this a.m., she showed me her fingers, and they did not even > look > > like they belonged on her hand, they were so swollen and > > misshapen... and her migraines have been worse as well....I > think > > she is scared, though she doesn't come right out and say so, > she > > gets moody and sullen. She is to increase the mtx > tonight > > but if it hasn't done much so far, is it time to push for a > > biologic? She has been on the mtx 6 weeks now.> > > > Thanks for allowing the vent....I am worried too...and when > > she gets to feeling so bad physically, so tends to > > communicate less, and that is difficult... .ah, teenagers... .> > > > Any input on the insurance dilemmas, or even things > > we can do to fight these terrible standards, > and/or where > > to begin, I'm anxious to learn!> > > > Thanks all, for your patience.> > > > nancy> > worried mom of , 17, poly, cvid, migraines> > > > > > ------------ --------- --------- ---> > Catch up on fall's hot new shows on TV. Watch > > previews, get listings, and more!> > > > > > ---------------------------------> Don't let your dream ride pass you by. Make it a reality > with Autos. > > > > > > > > > > > ---------------------------------> Don't let your dream ride pass you by. Make it a reality > with Autos. > > > > > > > > > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
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