Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Crystal, I know it is funny, but the description of you trying to fit " all those ladies " in your house cracked me up. I hope it all goes well--Eva is doing so well, from your report, that I am sure they will just be blown away and won't notice that they have been " invited " into a sardine can!! Get the folding chairs ready! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Good luck with the review. If these are folks who are in your home regularly providing care to Eva, then they know what your house looks like in its " lived-in " state. They also should be well aware of the reasons why your home may not be picture perfect. So... relax. Prepare your mind for the evaluation rather than your home for the evaluators. Let us know how things go! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Yeah they are in my house all the time (well all but 2 or 3 of them) we are going to start PT after this too so one more thing added to my plate and appointments. Then after they leave I have to go to a doctors appointment up at childerns to see the poulmologist(SP) and I hope they have some answers for me after her scope and they also had a meeting about her with the ENT and the cardiologist. The main reason I am cleaning is to give us a bit more room to sit and the other is just for me to have a clean house...lol. I do try to shampoo my carpet once every 2 or 3 months because I have 3 kids and they love to forget to take their shoes off and drop things on my floor. I think I am doing the cleaning more for me then them...lol. Thanks for the well wishes, Crystal > > Good luck with the review. If these are folks who are in your home > regularly providing care to Eva, then they know what your house looks like > in its " lived-in " state. They also should be well aware of the reasons why > your home may not be picture perfect. So... relax. Prepare your mind for > the evaluation rather than your home for the evaluators. Let us know how > things go! > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Crystal: I know just how you feel! I have a bunch of new people coming here on Thursday to spend two hours getting to know a bit, and there's no way in h___ that I can spend time with on Tuesday and Wednesday and get things really done here. I just tell them that. Listen to Pam and Michele. It's going to be fine. From one of my hunches recently (if that makes sense), I've decided that the folks who're helping us enjoy seeing Andy and me overwhelmed while seeing a truly happy trooper at the same time. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 you are a syper mum thats y ur name is that lol wel godo luk with them all and update in here andof course my favourite place bout it lol love u and my old house was a very small we would have people all over but we mannaged mum would well thats y my btrother was in the garage and thats y w e allwasy were outside > > Crystal: > I know just how you feel! I have a bunch of new people coming here on > Thursday to spend two hours getting to know a bit, and there's no > way in h___ that I can spend time with on Tuesday and Wednesday > and get things really done here. I just tell them that. Listen to Pam and > Michele. It's going to be fine. From one of my hunches recently (if that > makes sense), I've decided that the folks who're helping us enjoy seeing > Andy and me overwhelmed while seeing a truly happy trooper at the > same time. Martha > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Agreed. A little reality never heard anybody! (Not that I'd show anyone the full extent of my 'reality' at the moment! LOL) Now, if I could make notes look like wallpaper.... I'm just thinking, " All the better to help you, dear... " if they see a little bit of the reality of your day to day life with . And for them to see her happy gives them a standard to maintain. in Ma. Mom to , 20 yrs old (CHARGE), 22 yrs. and partner to Alan (12 years now) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Crystal- I'm relieved to know it was more " spring cleaning " that was well-timed and motivated by a house full! Truthfully, our house only gets a good cleaning when we have company -- basically Oct and Dec!! I need to plan a house-full in the spring to get myself going! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Crystal- I'm relieved to know it was more " spring cleaning " that was well-timed and motivated by a house full! Truthfully, our house only gets a good cleaning when we have company -- basically Oct and Dec!! I need to plan a house-full in the spring to get myself going! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Crystal- I'm relieved to know it was more " spring cleaning " that was well-timed and motivated by a house full! Truthfully, our house only gets a good cleaning when we have company -- basically Oct and Dec!! I need to plan a house-full in the spring to get myself going! Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Martha- Amen. And in your case, it's critical that the people involved understand what the reality of living with is -- not some cleaned up snap-shot created just for their visit. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ RE: 6 month review Crystal: I know just how you feel! I have a bunch of new people coming here on Thursday to spend two hours getting to know a bit, and there's no way in h___ that I can spend time with on Tuesday and Wednesday and get things really done here. I just tell them that. Listen to Pam and Michele. It's going to be fine. From one of my hunches recently (if that makes sense), I've decided that the folks who're helping us enjoy seeing Andy and me overwhelmed while seeing a truly happy trooper at the same time. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Martha- Amen. And in your case, it's critical that the people involved understand what the reality of living with is -- not some cleaned up snap-shot created just for their visit. Michele W mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ RE: 6 month review Crystal: I know just how you feel! I have a bunch of new people coming here on Thursday to spend two hours getting to know a bit, and there's no way in h___ that I can spend time with on Tuesday and Wednesday and get things really done here. I just tell them that. Listen to Pam and Michele. It's going to be fine. From one of my hunches recently (if that makes sense), I've decided that the folks who're helping us enjoy seeing Andy and me overwhelmed while seeing a truly happy trooper at the same time. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 goodluck Crystal... know that feel as well.... there is always the front lawn :-) nicole xox > Wednesday is Evas 6 month review with the theropists. So I will have 5 > theropist, a social worker, and a case worker all in my house at the > same time!! I HAVE NO ROOM!! I have also been cleaning all morning, I > shampooed the carpets and got on a ladder and cleaned the ceiling fan, > I have a vaulted ceiling so it was not easy getting up there...lol. I > have to clean the bathroom and kitchen really well tomorrow. Laundry > is done and I then I have to figure out where to put all these > ladies...lol. Wish me luck!! When the 5 of us are in the livingroom > there is no room and I cant see 9 of in here!! LOL! > > Crystal, mom to (10), (2), and Eva (10 month charger), > wife to Dan (9 years now!!) > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > 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 > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. 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 7, 2006 Report Share Posted March 7, 2006 goodluck Crystal... know that feel as well.... there is always the front lawn :-) nicole xox > Wednesday is Evas 6 month review with the theropists. So I will have 5 > theropist, a social worker, and a case worker all in my house at the > same time!! I HAVE NO ROOM!! I have also been cleaning all morning, I > shampooed the carpets and got on a ladder and cleaned the ceiling fan, > I have a vaulted ceiling so it was not easy getting up there...lol. I > have to clean the bathroom and kitchen really well tomorrow. Laundry > is done and I then I have to figure out where to put all these > ladies...lol. Wish me luck!! When the 5 of us are in the livingroom > there is no room and I cant see 9 of in here!! LOL! > > Crystal, mom to (10), (2), and Eva (10 month charger), > wife to Dan (9 years now!!) > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > 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 > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. 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 7, 2006 Report Share Posted March 7, 2006 goodluck Crystal... know that feel as well.... there is always the front lawn :-) nicole xox > Wednesday is Evas 6 month review with the theropists. So I will have 5 > theropist, a social worker, and a case worker all in my house at the > same time!! I HAVE NO ROOM!! I have also been cleaning all morning, I > shampooed the carpets and got on a ladder and cleaned the ceiling fan, > I have a vaulted ceiling so it was not easy getting up there...lol. I > have to clean the bathroom and kitchen really well tomorrow. Laundry > is done and I then I have to figure out where to put all these > ladies...lol. Wish me luck!! When the 5 of us are in the livingroom > there is no room and I cant see 9 of in here!! LOL! > > Crystal, mom to (10), (2), and Eva (10 month charger), > wife to Dan (9 years now!!) > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > 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 > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. 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 7, 2006 Report Share Posted March 7, 2006 Yeah it is mostly just a god cleaning that the house needed anyway. But its not so clean that you can eat off the floor...lol. I do have boxes in the hallway and Evas room is packed with stuff. Since she doesnt play in her room yet its kind of also my storage room...lol. So is my room for that fact but this summer in June we are having a rummage so I am working on that alittle bit too. Its easier on me if I just do alittle here and there then trying to do it all at once. Alsom my mom and a couple of friends will be helping me. I figure it will help pay some bills and stuff. Crystal and Eva (10 month charger) > > Crystal- > I'm relieved to know it was more " spring cleaning " that was well- timed and > motivated by a house full! Truthfully, our house only gets a good cleaning > when we have company -- basically Oct and Dec!! I need to plan a house-full > in the spring to get myself going! > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Yeah it is mostly just a god cleaning that the house needed anyway. But its not so clean that you can eat off the floor...lol. I do have boxes in the hallway and Evas room is packed with stuff. Since she doesnt play in her room yet its kind of also my storage room...lol. So is my room for that fact but this summer in June we are having a rummage so I am working on that alittle bit too. Its easier on me if I just do alittle here and there then trying to do it all at once. Alsom my mom and a couple of friends will be helping me. I figure it will help pay some bills and stuff. Crystal and Eva (10 month charger) > > Crystal- > I'm relieved to know it was more " spring cleaning " that was well- timed and > motivated by a house full! Truthfully, our house only gets a good cleaning > when we have company -- basically Oct and Dec!! I need to plan a house-full > in the spring to get myself going! > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Yeah it is mostly just a god cleaning that the house needed anyway. But its not so clean that you can eat off the floor...lol. I do have boxes in the hallway and Evas room is packed with stuff. Since she doesnt play in her room yet its kind of also my storage room...lol. So is my room for that fact but this summer in June we are having a rummage so I am working on that alittle bit too. Its easier on me if I just do alittle here and there then trying to do it all at once. Alsom my mom and a couple of friends will be helping me. I figure it will help pay some bills and stuff. Crystal and Eva (10 month charger) > > Crystal- > I'm relieved to know it was more " spring cleaning " that was well- timed and > motivated by a house full! Truthfully, our house only gets a good cleaning > when we have company -- basically Oct and Dec!! I need to plan a house-full > in the spring to get myself going! > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 I would love to have it outside but there is snow everywhere...lol Crystal > > goodluck Crystal... know that feel as well.... there is always the front > lawn :-) > > nicole xox > > Wednesday is Evas 6 month review with the theropists. So I will have 5 > > theropist, a social worker, and a case worker all in my house at the > > same time!! I HAVE NO ROOM!! I have also been cleaning all morning, I > > shampooed the carpets and got on a ladder and cleaned the ceiling fan, > > I have a vaulted ceiling so it was not easy getting up there...lol. I > > have to clean the bathroom and kitchen really well tomorrow. Laundry > > is done and I then I have to figure out where to put all these > > ladies...lol. Wish me luck!! When the 5 of us are in the livingroom > > there is no room and I cant see 9 of in here!! LOL! > > > > Crystal, mom to (10), (2), and Eva (10 month charger), > > wife to Dan (9 years now!!) > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > 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 > > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. 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 7, 2006 Report Share Posted March 7, 2006 I would love to have it outside but there is snow everywhere...lol Crystal > > goodluck Crystal... know that feel as well.... there is always the front > lawn :-) > > nicole xox > > Wednesday is Evas 6 month review with the theropists. So I will have 5 > > theropist, a social worker, and a case worker all in my house at the > > same time!! I HAVE NO ROOM!! I have also been cleaning all morning, I > > shampooed the carpets and got on a ladder and cleaned the ceiling fan, > > I have a vaulted ceiling so it was not easy getting up there...lol. I > > have to clean the bathroom and kitchen really well tomorrow. Laundry > > is done and I then I have to figure out where to put all these > > ladies...lol. Wish me luck!! When the 5 of us are in the livingroom > > there is no room and I cant see 9 of in here!! LOL! > > > > Crystal, mom to (10), (2), and Eva (10 month charger), > > wife to Dan (9 years now!!) > > > > > > > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > > http://www.imagestation.com/album/?id=2117043995 > > > > 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 > > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > > > 8th International > > CHARGE Syndrome Conference, July, 2007. 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 7, 2006 Report Share Posted March 7, 2006 You sound like me. Someone coming just gives me the deadline I need to get things done to the way I like them. Kim > Yeah they are in my house all the time (well all but 2 or 3 of them) > we are going to start PT after this too so one more thing added to > my plate and appointments. Then after they leave I have to go to a > doctors appointment up at childerns to see the poulmologist(SP) and > I hope they have some answers for me after her scope and they also > had a meeting about her with the ENT and the cardiologist. > The main reason I am cleaning is to give us a bit more room to sit > and the other is just for me to have a clean house...lol. I do try > to shampoo my carpet once every 2 or 3 months because I have 3 kids > and they love to forget to take their shoes off and drop things on > my floor. I think I am doing the cleaning more for me then > them...lol. > > Thanks for the well wishes, > Crystal > > > >> >> Good luck with the review. If these are folks who are in your home >> regularly providing care to Eva, then they know what your house > looks like >> in its " lived-in " state. They also should be well aware of the > reasons why >> your home may not be picture perfect. So... relax. Prepare your > mind for >> the evaluation rather than your home for the evaluators. Let us > know how >> things go! >> >> Michele W >> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ >> > > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > 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 > (CHARGE Syndrome Canada - http://www.chargesyndrome.ca) > > 8th International > CHARGE Syndrome Conference, July, 2007. 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 7, 2006 Report Share Posted March 7, 2006 Crystal- As a PT who used to do home visits, I can assure you that the therapists will not be scrutinizing the condition of your house. Anyone with kids knows that life happens. Most pediatric therapists are used to sitting on the floor anyway, and are sometimes more comfortable there, so don't worry about the folding chairs. As long as the floor is reasonably clean (i.e. no big chunks of food, etc), the therapists will probably be quite comfortable. We've all been in houses that were deplorable and we were afraid to sit down (bad story about cockroaches running up pant legs), so I know your house is no where like that. So in otherwords, RELAX!! Also, in regards to adding another therapist for Eva--is there anyway that the visits can be consolidated (co-treatments) so that one session covers 2 disciplines? Or, I know some areas work on a transdisciplinary approach, where 1 or 2 members of the team do most of the face to face visits, after the whole team has evaluated the patient and created a treatment plan. Usually, the most involved discipline becomes the primary therapist. With CHARGE, its hard to say which that would be. The primary reason to do this is to cut down on the people in and out and to give the family a little continuity and make it a little easier. Obviously, if there is something that is outside of the comfort zone for the treating therapist, they will bring in the specific discipline therapist for help. But its still less people every week. Can you see if this is an option for Eva? Hope this made sense and was not to rambly. Kate (PT) > > Crystal- > I'm relieved to know it was more " spring cleaning " that was well- timed and > motivated by a house full! Truthfully, our house only gets a good cleaning > when we have company -- basically Oct and Dec!! I need to plan a house-full > in the spring to get myself going! > > Michele W > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 The livingroom was my main concern just to make sure everyone has a place to sit, yeah I know the floor is good for most since most of them sat on the floor the 1st time..lol. I just want to make sure they are not sitting on something gross the kids may have dropped there a week ago...ya know. Trust me my house is not so clean that the president would want to come here...lol. I have boxes in the hallway and my room and Evas is a storage area right now...lol. The theropists come everyweek so they know what my house looks like I just dont want it to be to gross when they come so I do clean up a bit before they all come everyday. As for adding PT we are going to talk about co-treating. Her OT and Developmental work together. I hope adding PT will help her alot and I hope they help her sit up. I have no idea why we didnt have that in the 1st place but whatever. Then afte they leave she has a doctors appointment....OH BOY!! Busy day for us. Wish me luck!! Crystal and Eva (10 month charger) > > > > Crystal- > > I'm relieved to know it was more " spring cleaning " that was well- > timed and > > motivated by a house full! Truthfully, our house only gets a good > cleaning > > when we have company -- basically Oct and Dec!! I need to plan a > house-full > > in the spring to get myself going! > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 The livingroom was my main concern just to make sure everyone has a place to sit, yeah I know the floor is good for most since most of them sat on the floor the 1st time..lol. I just want to make sure they are not sitting on something gross the kids may have dropped there a week ago...ya know. Trust me my house is not so clean that the president would want to come here...lol. I have boxes in the hallway and my room and Evas is a storage area right now...lol. The theropists come everyweek so they know what my house looks like I just dont want it to be to gross when they come so I do clean up a bit before they all come everyday. As for adding PT we are going to talk about co-treating. Her OT and Developmental work together. I hope adding PT will help her alot and I hope they help her sit up. I have no idea why we didnt have that in the 1st place but whatever. Then afte they leave she has a doctors appointment....OH BOY!! Busy day for us. Wish me luck!! Crystal and Eva (10 month charger) > > > > Crystal- > > I'm relieved to know it was more " spring cleaning " that was well- > timed and > > motivated by a house full! Truthfully, our house only gets a good > cleaning > > when we have company -- basically Oct and Dec!! I need to plan a > house-full > > in the spring to get myself going! > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 The livingroom was my main concern just to make sure everyone has a place to sit, yeah I know the floor is good for most since most of them sat on the floor the 1st time..lol. I just want to make sure they are not sitting on something gross the kids may have dropped there a week ago...ya know. Trust me my house is not so clean that the president would want to come here...lol. I have boxes in the hallway and my room and Evas is a storage area right now...lol. The theropists come everyweek so they know what my house looks like I just dont want it to be to gross when they come so I do clean up a bit before they all come everyday. As for adding PT we are going to talk about co-treating. Her OT and Developmental work together. I hope adding PT will help her alot and I hope they help her sit up. I have no idea why we didnt have that in the 1st place but whatever. Then afte they leave she has a doctors appointment....OH BOY!! Busy day for us. Wish me luck!! Crystal and Eva (10 month charger) > > > > Crystal- > > I'm relieved to know it was more " spring cleaning " that was well- > timed and > > motivated by a house full! Truthfully, our house only gets a good > cleaning > > when we have company -- basically Oct and Dec!! I need to plan a > house-full > > in the spring to get myself going! > > > > Michele W > > mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ > > > Quote Link to comment Share on other sites More sharing options...
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