Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 , good luck with this and kisses to Sara. pam from boston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 What a crazy time. I hope you are finding some moments of peace in between all the " stuff " . How are Sara's spirits through all the testing? I assume she's staying in the hospital til they figure this out and fix it? Michele W > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 Michele, She is actually doing well. She wants her mommy all the time though. She was very groggy when I left her with daddy tonight, so I hope she never notices I'm gone- it's when she cries that the pouch inflates. I am home tonight to re-group and do some laundry- I'm all out of clean stuff, imagine that. The house is very quiet b/c the boys are with my mom tonight. I'm so exhausted- as soon as my clothes are in the dryer I'm off to bed. Yes, she will stay in the hospital as far as we know. Its all very surreal. The doctors sit down to talk to us and dont know what to say. They are baffled. We are dazed and confused as well. thanks for the support hugs, > What a crazy time. I hope you are finding some moments of peace in > between all the " stuff " . How are Sara's spirits through all the > testing? I assume she's staying in the hospital til they figure this > out and fix it? > > Michele W > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 - My heart and thoughts will be with you throughout. I hope you had a nice restful sleep and are refreshed and ready for more. Hugs- Michele > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 hope all gets resolved--hugs from us to you!! maria and the guys Sara Mark > > > Well, they ran all sorts of tests, and still have no idea what > Sara's " throat pouch " is. It is almost like an air filled hernia > that intrudes into her esophagus when she's agitated or breathing > deeply. One idea is that there is a defective channel in her airway > that ends in this " bubble " . And the other is that it is some type > of hernia coming from the top of her lung, intruding into the > esophagus. The spot that it is at should NOT have the possibilty of > an air pocket. We are in weekend waiting now... I guess they'll put > on their thinking caps and consult cinc. on Monday, if not before > with the info they got today (or lack thereof). I'll keep yall > posted when I can! Thanks for your responses as always! > Mark > > > > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 , Prayers for you and your family. Prayers for the doctors to find the answers you need. Blessings and Hugs, Lynn Re: Sara Mark Michele, She is actually doing well. She wants her mommy all the time though. She was very groggy when I left her with daddy tonight, so I hope she never notices I'm gone- it's when she cries that the pouch inflates. I am home tonight to re-group and do some laundry- I'm all out of clean stuff, imagine that. The house is very quiet b/c the boys are with my mom tonight. I'm so exhausted- as soon as my clothes are in the dryer I'm off to bed. Yes, she will stay in the hospital as far as we know. Its all very surreal. The doctors sit down to talk to us and dont know what to say. They are baffled. We are dazed and confused as well. thanks for the support hugs, > What a crazy time. I hope you are finding some moments of peace in > between all the " stuff " . How are Sara's spirits through all the > testing? I assume she's staying in the hospital til they figure this > out and fix it? > > Michele W > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2005 Report Share Posted January 22, 2005 This must all be very stressful for you (not to mention for Sara). Hope you managed to get a good night's sleep and feel at least refreshed enough to handle this process. Lots of positive thoughts coming to you and your family from London. Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Thank you all for the support, today was much better b/c I had my " hospital parent " hat ready this morning when I woke up! I dont do well with " bricks " as Michele put it! It will probably be Tues before anyone really tries to make a decision with tests scheduled for Monday. So really we'll be bored more than anything. It could be much worse so I'm not complaining. thanks yall! > This must all be very stressful for you (not to mention for Sara). > Hope you managed to get a good night's sleep and feel at least refreshed > enough to handle this process. Lots of positive thoughts coming to you and > your family from London. > > Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 I hope this all works out soon. Just remember doctors aren't God. But when you find the good ones even though they " haven't seen it before " they can help. It's teamwork! Good thoughts coming your way. Bonnie Quote Link to comment Share on other sites More sharing options...
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