Guest guest Posted July 25, 2003 Report Share Posted July 25, 2003 Deidre:I've met before & have run into her at Rivertown Mall I also met another mom from Kentwood 2 summers ago at the Woodland Mall. I don't think I've heard of Ella before, but hopefully she knows her stuff. Boy I hope your ins. will cover this for you. Some do, some don't. If not, APPEAL APPEAL APPEAL! Let us know what you find out. Don't beat yourself up for not beginning treatment sooner!! is still very young and still has plenty of time for correction. Like you said, you didn't know. You're getting him the treatment now, that's all that matters. Good for you. We got Abby the white band and decorated it w/stickers, put her name on it w/stickers or decorated it for the season. It's a lot of fun to decorate I thought, even though I'm sooo not artistic Glad the pt for tort is progressing nicely. Glad you have found us!! It is indeed a small world. Debbie Abby's mom Jenison Blondee10@... wrote: Well hi there Debbie! What a small world! Do you guys ever do playdates?Yes, we went to MFB for the scanning but we don't have . 's orthotist is Ella. We have ASR insurance (a PPOM). We are waiting to find out if they will cover any of it. If not we will then start writing letters to Crippled Children's and some other organizations to see if they can help cover it. I'm really hoping the insurance comes through. It will cost $1550 for it. Sheesh... that's his whole savings and then some! has been in therapy for his tort since March. He has come a long way since then, but I'm now wishing we'd gotten into a helmut sooner. Had I known that he would have the best chance at an earlier age at having a nicely rounded head we would have done it sooner maybe. I guess maybe I was in denial at first (who wants to admit their child is less than perfect?) and kept trying to figure out if it was something I did during pregnancy (you know... the whole "guilt factor"). Anyway, I got over it and now we are taking action.It's unbelieveable how many children end up with this. However, I was confused as to why I'd never noticed kids wearing the helmuts before. Maybe I did see them but didn't want to stare... who knows! Anyhow, I finally saw our first helmut when we went in for the scan. It wasn't as bad as I thought I guess. And then when we left I saw a kid wearing one. They are actually pretty cute!I think we will be getting a white one to decorate ourselves. What did you do? Is it worth getting a printed one? Would we be better off or is it more fun to decorate them?Well thanks for the warm welcome. I am looking forward to learning a lot about this condition.Deidre PiechockiKentwood, MISTARband: coming soon to a noggin near you!In a message dated 7/25/2003 5:20:10 AM Central Daylight Time, Plagiocephaly writes: Holy moly Deidre!Welcome neighbor! I'm in Jenison Michigan How bout that huh? Another of our group moderators also lives in Kentwood, and another of our members is near Muskegon (or is it Grand Haven Mari?). I'm assuming you have gone to Free Bed for the scanning in Grand Rapids right?? Is your orthotist? I hope so, I've heard rave reviews about her knowledge and has given 's daughter a beautifully rounded head w/the STARband!! I also brought my daughter to MFB, but that was almost 3 yrs ago - eeekkk, before they had the scanner or I'm sure you're in great hands :)What insurance do you have? I had Priority Health & they covered Abby's as durable medical equipment at 50% coverage which was fine by me :)Has she rec'd any physical therapy for her torticollis?Well it's gret to have another local in our group What a very small world huh? I've been w/the group darn near 3 yrs and am amazed (and saddened) by all the Grand Rapids area membrs I've met.Debbie Abby's mom 3/1/00 DOCgraduateJenison, MIFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 Hi All, Yes, I posted on Tuesday, but I think because I'm new, my posts have to go through a moderator. Since Tuesday, I had a few knocks of reality and I'm not real happy about it. As I mentioned earlier, I have put my head in the sand for the last 2 years. I'm not stupid, or naive, I have even worked in Biochemistry for the last 25 years...but...as all of you can relate...THIS IS MY LIFE. I'm scared. Thank you Harold, and others, for the prayers. I know first hand they work. I am not real happy that God thought this auto-immune disease, whatever it ends up being, was a good idea. But I am thankful there are medications and while it is really hard to admit I need a drug to survive, I will do what I need to do. , I'm sorry you have to be on this list, but I'm glad we're the same age! I don't have a " firm " diagnosis, but I am in between Lupus and RA. Thanks for the warning on the Bextra! Oddly enough, two friends of mine, Dave Dewitt and Bill (professors at Michigan State University) discovered the 2 enzyme!! Dave said Vioxx really isn't bad either...you have to realize aspirin comes from the willow tree (salix...) and they removed a lot of the stomach upset from aspirin and left the anti-inflammatory action. Well, many people (me included) are overweight and use these medications for pain - but may have a predisposition to heart disease (I don't). If there are any questions you think I can answer - or direct to the " right " people, I would be happy to. We need to support each other...this is scary, and it hurts! , Ibuprofen? Wow, the way the post came across I couldn't tell if it was 4x800mg/daily or 4800 mg daily... sorry. Please let me know, I'll try anything. Also, one of the reasons my rheumy got me to take Plaquenil was that it has been around for 50 years...??? Hmmm... On another note, please add prayers again...yesterday when I went to give my rheumy a copy of my insurance card, I asked for a copy of my blood test results. I was so sure all of this is a big mistake, that I almost broke out in tears (well, I welled up in tears), when my ANA titer, which has been 1:40 for 2.5 years jumped to 1:160 in one month. Does this mean " hello, lupus? " I am scared, sorry. Or is it both?? This sucks, it really does. Please allow me to gripe for a minute - I have done a lot to keep myself healthy, I do a lot for others, I know about nutrition and my work and personal life has been hell, and felt I deserved a break. What do I get? A life changing disease that I can't talk to my engineer husband about 'cause he is so neurotic and would probably think I am dying and DISCONNECT from me, so I just tell him I have arthritis. Is anyone else in this situation? He's a great guy, but knows nothing about medical issues and always assumes the worst... " Oh, Lupus/RA, when will you be dead? " I tried to tell him something about it last week and got, " Oh, you mean you need a wheelchair? " I felt like saying, " Yes, to cart your dead body around. " I am sorry if this sounds offensive and these aren't things I verbalize to my husband, it's just sick mental humor that helps me get by. Thank you for allowing me the long post, and take care everyone! Hugs, Joyce in MI Quote Link to comment Share on other sites More sharing options...
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