Guest guest Posted March 24, 2005 Report Share Posted March 24, 2005 diane46789@... wrote: > I was pretty mad for some time in > the beginning... Me, too! I think anger is part of the grief process. The trouble with this is -- how can you be mad at your precious baby? And who do you blame when it's no one's fault?? I didn't realize that I was feeling at fault and very inadequate to meet the task of raising her -- until I met the families at my first conference and felt immense relief to meet them and realize that if they were ok, I was ok too. Reconciling the anger and frustration is hard and takes us all a different amount of time. Then again, it rears it's ugly head just when you forgot about it and thought it was gone forever. That's one reason why this kind of group is so valuable -- to share all that stuff that no one else gets. Michele W Aubrie's mom 7 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2005 Report Share Posted March 24, 2005 - Hello to you and Makenna! I love her name! I can't imagine having your child is the hospital for so long. My daughter, Aubrie, was hospitalized for about 5 weeks or so. That was plenty hard. She did not have breathing troubles or a trach. Her worst " thing " was feeding. She had her Gtube removed before age 2 yrs. She is now in 1st grade in a regular classroom in our local school with a 1:1 aide and lots of therapies. She's an absolute doll and doing quite well. I hope the new mom you've met will join us too as soon as she feels able. I came on very early in Aubrie's infancy and don't think I'd be sane without it. Nor would Aubrie be doing as well because the knowledge I have gained and the connections I have made thru the list and the Foundation have been very important. Welcome! Michele W mom to Aubrie 7 yrs (CHaRgE) and 13 yrs, wife to DJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2005 Report Share Posted March 24, 2005 Hi Diane I know what you mean about not wanting the surgery for the cleft. Makenna had her lip repair right before we left the hospital the first time. It is so scary thinking how different she would look. But I must say the surgery to lengthen her nose was the scariest. I loved the little kitten nose she had. However she is a beautiful girl now too. Talk soon, > Welcome and Makenna, > Isnt it great how we are all being led to this group and it is growing by the > day?Maybe we really can let the world know about CHARGE!. > > My daughter also had the cleft lip & pallet.I grew to love her with that not > repaired.She was too ill to have it fixed at first,For a year I knew her with > that and always took her out in public,walmart,etc..I was just so happy she > lived I didnt care about that. I had a baby finally at home. It was trivial in > the whole health matter....I remember the eve before her lip repair I almost > didnt want her to change.wow if that isnt something about the real meaning of > life... > > Welcome.My daughter is Mandy, 11, and doing good..... > Happy Easter to you and your family. > > Recruite the new mom It may take her a bit....alot to take in....then seeing > all of us on the web sharing in our joys..I was pretty mad for some time in > the beginning... then I grew up!!!!! > Our best to your family. > Diane,Mandy,Haley,Joe, Illinois > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2005 Report Share Posted March 24, 2005 > " Hello to you and Makenna! I love her name! " In Kimeru (my first language - I am of Kenyan origin) it means " happy one " . Don't say I don't make a huge contribution to this group!!! Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2005 Report Share Posted March 24, 2005 Flo, NO ONE would ever say that!!! I love that Makenna's name means something so special!! pam > ---------- > From: Florence Njeru > Reply To: CHARGE > Sent: Thursday, March 24, 2005 7:10 AM > To: CHARGE > Subject: Re: HELLO > > > > > > > " Hello to you and Makenna! I love her name! " > > In Kimeru (my first language - I am of Kenyan origin) it means " happy one " . > Don't say I don't make a huge contribution to this group!!! > > Flo > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada information and membership, please visit http://www.chargesyndrome.ca, or email info@.... > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at www.chargesyndrome.org or by calling 1-. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2005 Report Share Posted March 25, 2005 I have been reading everyone's posts for awhile and it is amazing how many experiences we all have in common. We are lucky enough to live in Connecticut near Yale-New Haven Hospital, so when my daughter Kelsey was born 17 years ago, she was transferred there immediatly. She had her first surgery at 5 days old to correct bilateral boney choanal atresia. She had numerous revisions of this surgery because the stent kept rotating. All in all she had the stent in for 7 months. Dr. Margaret Kenna was a godsend. Many more surgeries followed and by Kelseys third birthday she had had 22 surgical admissions with over 50 different procedures. Those early years are so medically oriented. Kelsey was diagnosed with CHArGE almost at birth when her pediatrician could not pass a catheter through her nose, so we knew right away somewhat to expect( if you ever do). With cleft lip revisions at age 11 and 15, Kelsey is hopefully done with the surgical interventions. The psychiatric issues are another story. She is currently taking Strattera for ADD and Lexapro for depression. Whereas she is wonderfully spontaneous, her impulsivity is hard to control. She had been taking Zyprexa, but recently she decided that she didn't like the way it made her feel. Does anyone with older CHARGE children live near us? I would love to be in direct contact with someone. My email is stone419@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2005 Report Share Posted March 25, 2005 - Welcome! It's so helpful to have " visions of the future " with older kids and adults on the list. My daughter is 7 yrs old. She has been very good medically. She's had many surgeries and procedures but all have been minor compared to choanal atresia repairs etc. She is still delightful with some OCD-type issues. I am concerned about psych issues in the future so I read all these posts with great interest. Again-- welcome to the family. I hope you find some folks close to you. Any chance you and Kelsey can make it to Miami in July? Michele W Aubrie's mom > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2005 Report Share Posted March 25, 2005 We can't make it to Miami. Actually, Kelsey is not happy that I have anything to do with this group! She thinks it makes her abnormal if I discuss her situation with other people. She doesn't realize yet that all parents do that. thanks for your welcome, > >Reply-To: CHARGE >To: CHARGE >Subject: Re: Hello >Date: Fri, 25 Mar 2005 11:32:51 -0600 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2005 Report Share Posted March 25, 2005 You're not the only one who has an adult child who prefers not to know about the list. Lynn, in Ohio, found us a few years ago. Her adult daughter is not involved in the list, but we appreciate Lynn's participation. Michele w Stone wrote: > We can't make it to Miami. Actually, Kelsey is not happy that I have > anything to do with this group! She thinks it makes her abnormal if I > discuss her situation with other people. She doesn't realize yet that all > parents do that. > thanks for your welcome, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 > Hi, > I've been lurking for a few weeks. Not new to chronic pain but fairly > new (almost a year) to almost constant pain. 6 years ago I had a > laminectomy and have had trouble off and on since 6 months after the > surgery. > > Has anyone had good relief from a TENS unit? I'm > trying one out through my chiropractor, but he seems pretty ignorant > about " how " to use it. I really appreciate the support I've found > just reading everyone's posts. Th doctor wants me to go through pain > management this summer. Has anyone found this helpful? > Kendra, The company should have a representative to call when you got it and if not where you order the supplies has the phone number and the really know how to tell you. Whoever prescribed it should be showing it but the company I had was great. I had a computerized TENS that had pre programmed areas or you could go manual, I found the company to be most helpful. The TENS unit did not help me but it helps many people. I used it years ago and then they wanted me to try again. The Tens unit had changed and are better, they have larger pads and more options. I hope it helps you and I keep a pain dairy so the doctor knows that my pain is higher and when it is covered and not. I hope that helps and you do well. Pain Management is helpful .Bennie > > Quote Link to comment Share on other sites More sharing options...
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