Guest guest Posted January 27, 2001 Report Share Posted January 27, 2001 Sue: At least you're seeing progress with the 1st band....I'm the one who was " crying " last night & posted my comments as my daughter has had NO progress after almost 3 mos now! Keep your chin up, hopefully your new insurance will cover the 2nd band. Is your child in the STARband or DOC?? How old when you rec'd the 1st band?? Good Luck & hang in there! Debbie (Abby's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2001 Report Share Posted January 27, 2001 Debbie, Hope this finds you feeling better. Have you actually taken Abby back to the Neurosurgeon since the diagnosis? The reason I am asking is because with Riley, the thing I noticed most was her misalligned ears. Everytime we went to Cranial Tech (she's in a DOC band since she's been 5 months old), they kept telling us how wonderfully the back of her head was filling in and how the slope is less prominent. I'll tell you, I never noticed anything wrong with the back of her head and I never noticed a slope. It was her ears and as far as I was concerned, it wasn't helping. It wasn't until we went back to the Neurosurgeon who told us of the wonderful improvement that I started to relax. I realized that although her ears weren't alligned yet, there were things we couldn't see that actually were being corrected. The doctors and the techs at CT know what to look for. We only see the most prominent and obvious areas. Many times these are the areas that are hardest to fix. In our case, it's going to take two bands to fix her ears. (She'll start the 2nd band at almost 9 months old.) I guess my question to you is are you just not seeing any improvement or have you actually been told by the doctors and techs that it's not working? Sincerely, Sue and Riley (banded 10/23/00 - onto 2nd band) Phoenix, AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 Hi : Damn, damn, damn! It was so disheartening to read about blood being, once again, in Rob's urine. I am so sorry:( Did you see it again, or was it that one time only? On the flip side, sounds like you all had a great weekend! I will keep Rob in my thoughts and prayers that this will NOT come back again. Take care. Patty P.S. Apparently one very stressed mommy who spent some time in the ER with chest pains!!!!!!! Of course, I was thankful that it was me in the ambulance and NOT one of my girls. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 Me too, We just got back from taking to Cincinnati Childrens and I am so lost. I hope it was a false alarm and nothing serious. Love and Hugs Becki and 5 systemic (who was teased by Dr.Lovell for faking it all these years) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 Chest pains?!? Did I miss something? You better take care of yourself. I hope that all is ok with you. Michele Re: here we go again... Hi : Damn, damn, damn! It was so disheartening to read about blood being, once again, in Rob's urine. I am so sorry:( Did you see it again, or was it that one time only? On the flip side, sounds like you all had a great weekend! I will keep Rob in my thoughts and prayers that this will NOT come back again. Take care. Patty P.S. Apparently one very stressed mommy who spent some time in the ER with chest pains!!!!!!! Of course, I was thankful that it was me in the ambulance and NOT one of my girls. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 -, Im so sorry this is happening again to Rob.. ill keep him in my prayers and hope and pray this was a fluke, a one off occurance. Hugs Helen and (6,systemic) -- In , snooksmama@j... wrote: > Well, after all the activity this weekend, last night Rob had bloody > urine again. So he is back to watching it again...and to inform me if it > is continuing. I called Cincinnati nephrology this morning, and the > nephro called me back in one hour! Talk about great service. Anyway, he > said if it is continuing he wants to see him this week. Say a prayer that > it was just an isolated episode...I sure don't want him to have a renal > biopsy, and if this continues, it may come to that. Thanks for your > prayers! > With all the walking, hiking, etc, Rob could barely move this morning. He > couldn't go to school. But he THOROUGHLY enjoyed the Larsons this > weekend, and Thunder, and Donna's two boys, as well as the rest of the > FACES crew! Becki said that has rechecks 3 more times in Cincy, so > we can plan on seeing them every time they are in town. I said I guess > that means a party every 6 months! > Thanks to all for making our weekend so special. > PS Uncle Rusty DID bring a spud gun. Unfortunately, no spuds were injured > in the course of the experiment. We resorted to launching spuds with a > water balloon launcher we have just in case of such an emergency! It is a > giant slingshot, basically. > Love, > and Rob 14 Spondy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 -Patty, Ok young lady, spill the beans here.. whats going on with you...Now you have me worried about YOU! HUgs Helen and (6,systemic) -- In , Emeraldsx3@a... wrote: > Hi : > > Damn, damn, damn! It was so disheartening to read about blood being, once > again, in Rob's urine. I am so sorry:( Did you see it again, or was it that > one time only? > > On the flip side, sounds like you all had a great weekend! > > I will keep Rob in my thoughts and prayers that this will NOT come back again. > > Take care. > Patty > P.S. Apparently one very stressed mommy who spent some time in the ER with > chest pains!!!!!!! Of course, I was thankful that it was me in the ambulance > and NOT one of my girls. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 Aww... . Poor Rob... I am hoping that this is in fact an isolated incident.. No more problems needed! Good luck... Alia -----Original Message-----From: snooksmama@... [mailto:snooksmama@...]Sent: Monday, April 19, 2004 11:50 AMrustyroom ; Subject: here we go again...Well, after all the activity this weekend, last night Rob had bloodyurine again. So he is back to watching it again...and to inform me if itis continuing. I called Cincinnati nephrology this morning, and thenephro called me back in one hour! Talk about great service. Anyway, hesaid if it is continuing he wants to see him this week. Say a prayer thatit was just an isolated episode...I sure don't want him to have a renalbiopsy, and if this continues, it may come to that. Thanks for yourprayers!With all the walking, hiking, etc, Rob could barely move this morning. Hecouldn't go to school. But he THOROUGHLY enjoyed the Larsons thisweekend, and Thunder, and Donna's two boys, as well as the rest of theFACES crew! Becki said that has rechecks 3 more times in Cincy, sowe can plan on seeing them every time they are in town. I said I guessthat means a party every 6 months!Thanks to all for making our weekend so special.PS Uncle Rusty DID bring a spud gun. Unfortunately, no spuds were injuredin the course of the experiment. We resorted to launching spuds with awater balloon launcher we have just in case of such an emergency! It is agiant slingshot, basically. Love, and Rob 14 Spondy Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.