Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 Bert, You cannot believe how much this kid eats! My husband has nicknamed him the "seagull" as he is all over everyone's plate! Some of the growth is in his trunk as the cast isn't as high up next to the armpits as it was when it was first put on. Good news, right? Hope Bridget is enjoying the water! Always, bert lehane <bert_lehane@...> wrote: Hey Jen, what have you been feeding him? That is an amazing amount of growth for 2 months. Lets hope much of that growth is in his trunk with the cast holding him in the corrected position. good luck for your cast change love Bert Viveiros <jviv314@...> wrote: It looks like we'll all be there for the same time on the Wednesday. Jake's appt is for 4pm. They never did give me a time for the cast on Thursday. I, too, am NOT looking forward to the 10 hour drive with a 4 year old and a 1 year old!!!!!!! We're also staying overnight on the 19th and will start our trek home on Friday. See you all there, mom to and Jake P.S. Jake has grown 1 1/2" since he was casted nearly 2 months ago!! Claflin <noellesmommy@...> wrote: Ian gets his cast off at 5 pm and then gets the new one at 11:30 am. I have an 8 hour drive, so we will get on the road at 6 am to be sure we make our appt on time. Not looking forward to that at all. I will stay over the 19th because I don't want to drive late at night. Noelle (12-2-01)Ian (8-15-04) Re: Re: Parent housing at Erie That's funny. I asked a nurse there if we could bring Jake's brother to stay in housing with us , and she said yes as long as they're pretty quiet. I guess it depends on who you ask. I'd ask again. Hmmm, mom to and Jaketh77381 <pthahn@...> wrote: we have been told all three trips that siblings are not allowed to stay in parent housing. however, you can request a list of hotels that do give shriner's discounted rates on rooms. in november, i stayed at the clarion which was nice and before we stayed at the hampton inn on 12th street about 5 minutes from hospital and it was ok.>> Can someone tell me what the parent housing is like up in Erie? How are the rooms and bathrooms set up? We were planning to stay at the hotel, but now are thinking it's getting to be such a huge expense esp since I doubt we can drive home the night he is casted because it will be too late. We will have Noelle with us too...are siblings allowed to stay in the parent housing?> > I am supposed to call to let her know if we are going to stay or not. > > > Noelle (12-2-01)> Ian (8-15-04)>------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 Hi , Yes I would think that's great that Jake is growing so much in his cast while his spine is held in the right position and I suppose the other positive I would take is that the cast is obviously not worrying him at all if he can eat that much and grow that much. I used to worry that Bridget would have no room for her stomach to expand in her tight cast but she managed beautifully and was able to fly 20 hrs to SLC from Aus and 30 hrs to England in her forst 2 casts so she couldn't have been that uncomfortable. She is really loving the water though after 14 months in plaster. She has taught herself to swim in the 5 weeks since we have been back and can swim to the bottom of the pool for sinkers and even do somersaults. This was hard initially as she was not used to curling her trunk after all the time in plaster. She is now 4 yrs and 10ths old and her back looks better than it did whaen she was 10 months od. I could never have said that if it hadn't of been for her casts. So for all those in your casts it has done woders for my lttle girl and I shudder to think where we would have been if I had believed the first opinion I had here in Aus. My ortho told me that nothing I could do would stop her curve progressing or decrease her curvature besides fusion. He also said that he would put a brace on her but really that would just delay the inevitable and by the time she was 8 or 10 her curve and the resultant deformity would be so bad that I would be begging him to fuse her spine. You can see why I was so grateful to find any other treatment to try first wherever we had to go in the world. He also told me that early fusion would result in my daughter having a short body and long arms and legs like a "daddy long legs spider" What a nice bloke!!! So everyone congratulations on arming yourself with as much info as you can before you decide on treatment for your children as there are many arrogant orthos out there and they don't all know what they are talking about. Love Bert and Bridget Viveiros <jviv314@...> wrote: Bert, You cannot believe how much this kid eats! My husband has nicknamed him the "seagull" as he is all over everyone's plate! Some of the growth is in his trunk as the cast isn't as high up next to the armpits as it was when it was first put on. Good news, right? Hope Bridget is enjoying the water! Always, bert lehane <bert_lehane@...> wrote: Hey Jen, what have you been feeding him? That is an amazing amount of growth for 2 months. Lets hope much of that growth is in his trunk with the cast holding him in the corrected position. good luck for your cast change love Bert Viveiros <jviv314@...> wrote: It looks like we'll all be there for the same time on the Wednesday. Jake's appt is for 4pm. They never did give me a time for the cast on Thursday. I, too, am NOT looking forward to the 10 hour drive with a 4 year old and a 1 year old!!!!!!! We're also staying overnight on the 19th and will start our trek home on Friday. See you all there, mom to and Jake P.S. Jake has grown 1 1/2" since he was casted nearly 2 months ago!! Claflin <noellesmommy@...> wrote: Ian gets his cast off at 5 pm and then gets the new one at 11:30 am. I have an 8 hour drive, so we will get on the road at 6 am to be sure we make our appt on time. Not looking forward to that at all. I will stay over the 19th because I don't want to drive late at night. Noelle (12-2-01)Ian (8-15-04) Re: Re: Parent housing at Erie That's funny. I asked a nurse there if we could bring Jake's brother to stay in housing with us , and she said yes as long as they're pretty quiet. I guess it depends on who you ask. I'd ask again. Hmmm, mom to and Jaketh77381 <pthahn@...> wrote: we have been told all three trips that siblings are not allowed to stay in parent housing. however, you can request a list of hotels that do give shriner's discounted rates on rooms. in november, i stayed at the clarion which was nice and before we stayed at the hampton inn on 12th street about 5 minutes from hospital and it was ok.>> Can someone tell me what the parent housing is like up in Erie? How are the rooms and bathrooms set up? We were planning to stay at the hotel, but now are thinking it's getting to be such a huge expense esp since I doubt we can drive home the night he is casted because it will be too late. We will have Noelle with us too...are siblings allowed to stay in the parent housing?> > I am supposed to call to let her know if we are going to stay or not. > > > Noelle (12-2-01)> Ian (8-15-04)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 Oh, Bert! Thank goodness you sought other treatment and I only just realized that you travel all the way from Australia to SLC. How do you do it?! Did they try to let her go longer in each cast so that you wouldn't have to make the trip so often? Also, what was her curve before casting and what is it now? Noelle (12-2-01)Ian (8-15-04) Re: Re: Parent housing at Erie That's funny. I asked a nurse there if we could bring Jake's brother to stay in housing with us , and she said yes as long as they're pretty quiet. I guess it depends on who you ask. I'd ask again. Hmmm, mom to and Jaketh77381 <pthahn@...> wrote: we have been told all three trips that siblings are not allowed to stay in parent housing. however, you can request a list of hotels that do give shriner's discounted rates on rooms. in november, i stayed at the clarion which was nice and before we stayed at the hampton inn on 12th street about 5 minutes from hospital and it was ok.>> Can someone tell me what the parent housing is like up in Erie? How are the rooms and bathrooms set up? We were planning to stay at the hotel, but now are thinking it's getting to be such a huge expense esp since I doubt we can drive home the night he is casted because it will be too late. We will have Noelle with us too...are siblings allowed to stay in the parent housing?> > I am supposed to call to let her know if we are going to stay or not. > > > Noelle (12-2-01)> Ian (8-15-04)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 That is a cute nickname "Seagull" It is always good news when the kids are growing! Good for Jake! Gail Re: Re: Parent housing at Erie That's funny. I asked a nurse there if we could bring Jake's brother to stay in housing with us , and she said yes as long as they're pretty quiet. I guess it depends on who you ask. I'd ask again. Hmmm, mom to and Jaketh77381 <pthahn@...> wrote: we have been told all three trips that siblings are not allowed to stay in parent housing. however, you can request a list of hotels that do give shriner's discounted rates on rooms. in november, i stayed at the clarion which was nice and before we stayed at the hampton inn on 12th street about 5 minutes from hospital and it was ok.>> Can someone tell me what the parent housing is like up in Erie? How are the rooms and bathrooms set up? We were planning to stay at the hotel, but now are thinking it's getting to be such a huge expense esp since I doubt we can drive home the night he is casted because it will be too late. We will have Noelle with us too...are siblings allowed to stay in the parent housing?> > I am supposed to call to let her know if we are going to stay or not. > > > Noelle (12-2-01)> Ian (8-15-04)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2006 Report Share Posted January 8, 2006 That is so awesome about Bridget's growth and wtg on the swimming!!! I know it is one of the best forms of exercise. Gail Re: Re: Parent housing at Erie That's funny. I asked a nurse there if we could bring Jake's brother to stay in housing with us , and she said yes as long as they're pretty quiet. I guess it depends on who you ask. I'd ask again. Hmmm, mom to and Jaketh77381 <pthahn@...> wrote: we have been told all three trips that siblings are not allowed to stay in parent housing. however, you can request a list of hotels that do give shriner's discounted rates on rooms. in november, i stayed at the clarion which was nice and before we stayed at the hampton inn on 12th street about 5 minutes from hospital and it was ok.>> Can someone tell me what the parent housing is like up in Erie? How are the rooms and bathrooms set up? We were planning to stay at the hotel, but now are thinking it's getting to be such a huge expense esp since I doubt we can drive home the night he is casted because it will be too late. We will have Noelle with us too...are siblings allowed to stay in the parent housing?> > I am supposed to call to let her know if we are going to stay or not. > > > Noelle (12-2-01)> Ian (8-15-04)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Hi , Bridget started with a 38 degree curve and quite a bit of rotation. She had her first 2 casts in England and then we attended the first ETTP in SLC in May and have been going there ever since. She was 3 and a half when she had her first cast so we had missed the greatest growth period, under 2 yrs but her curve corrected very well, down to 8 degrees in her 4th cast. Her problem is that her curve is very flexible and springs back immediately when the cast is taken off. HOwever the casts have completely fixed her rotation and her rib hump is gone. She has just been diagnosed with a ctd (Ehlers Danlos) which sort of explains why her curve jumps back so quickly. When we went back in Nov I asked if she could have a break from casts over summer here and the docs agreed. HEr curve bounced back to 28 out of cast but could be pushed to 12 dgrees in her brace. She has worn the brace now for 6 weeks and we are trying to build up her trunk muscles with lots of physio exercises and swimming. We go back to SLC in March (hopefully) to see Dr D'Astous and see what progress we've made or ground we have lost. She will be 5 in Feb. We are so happy with what we have achieved with casting and I would have no hesitation in putting her back in a cast when she progresses again. I think the CTD means the process of keeping her straight will be longer for us but I will be guided by Dr D'Astous. Remember too we started much later than is ideal so we may have been able to be fixed in 18 months if we had started when she was younger but we didn't know about it then. In any case we are much better off than in Australia where they said we could do nothing. I must post a picture of Bridget's back without her cast. It's a shame no one in Aus does it yet but we are just so grateful that they are happy to treat us in SLC. Love Bert and Bridge Claflin <noellesmommy@...> wrote: Oh, Bert! Thank goodness you sought other treatment and I only just realized that you travel all the way from Australia to SLC. How do you do it?! Did they try to let her go longer in each cast so that you wouldn't have to make the trip so often? Also, what was her curve before casting and what is it now? Noelle (12-2-01)Ian (8-15-04) Re: Re: Parent housing at Erie That's funny. I asked a nurse there if we could bring Jake's brother to stay in housing with us , and she said yes as long as they're pretty quiet. I guess it depends on who you ask. I'd ask again. Hmmm, mom to and Jaketh77381 <pthahn@...> wrote: we have been told all three trips that siblings are not allowed to stay in parent housing. however, you can request a list of hotels that do give shriner's discounted rates on rooms. in november, i stayed at the clarion which was nice and before we stayed at the hampton inn on 12th street about 5 minutes from hospital and it was ok.>> Can someone tell me what the parent housing is like up in Erie? How are the rooms and bathrooms set up? We were planning to stay at the hotel, but now are thinking it's getting to be such a huge expense esp since I doubt we can drive home the night he is casted because it will be too late. We will have Noelle with us too...are siblings allowed to stay in the parent housing?> > I am supposed to call to let her know if we are going to stay or not. > > > Noelle (12-2-01)> Ian (8-15-04)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Thanks Gail, Don't worry about and the dance class. My did exactly the same thing to me when she was 3. She was a lounge room dance star but froze in the class. She was also very determined and told me she didn't like doing the teachers moves she liked to make up her own. It saved me a lot of money in dance classes. Your reminds me so much of my girls. Does she like the Wiggles? Bert "Gail M. Kimball" <gmkimball@...> wrote: That is so awesome about Bridget's growth and wtg on the swimming!!! I know it is one of the best forms of exercise. Gail Re: Re: Parent housing at Erie That's funny. I asked a nurse there if we could bring Jake's brother to stay in housing with us , and she said yes as long as they're pretty quiet. I guess it depends on who you ask. I'd ask again. Hmmm, mom to and Jaketh77381 <pthahn@...> wrote: we have been told all three trips that siblings are not allowed to stay in parent housing. however, you can request a list of hotels that do give shriner's discounted rates on rooms. in november, i stayed at the clarion which was nice and before we stayed at the hampton inn on 12th street about 5 minutes from hospital and it was ok.>> Can someone tell me what the parent housing is like up in Erie? How are the rooms and bathrooms set up? We were planning to stay at the hotel, but now are thinking it's getting to be such a huge expense esp since I doubt we can drive home the night he is casted because it will be too late. We will have Noelle with us too...are siblings allowed to stay in the parent housing?> > I am supposed to call to let her know if we are going to stay or not. > > > Noelle (12-2-01)> Ian (8-15-04)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Thanks for posting Bert. Ian's curve is extremely flexible as well. Dr. Khoury is worried that his curve is going to spring right back out of cast as well. I guess we'll find out next week. Ian sees a geneticist later this month to be checked for Ehlers-Danlos. How did they definitively diagnose Bridget with Ehlers-Danlos? Did they do some sort of test or did she just exhibit enough symptoms that they could say that she had it? Thanks for helping me with my questions. Noelle (12-2-01)Ian (8-15-04) Re: Re: Parent housing at Erie That's funny. I asked a nurse there if we could bring Jake's brother to stay in housing with us , and she said yes as long as they're pretty quiet. I guess it depends on who you ask. I'd ask again. Hmmm, mom to and Jaketh77381 <pthahn@...> wrote: we have been told all three trips that siblings are not allowed to stay in parent housing. however, you can request a list of hotels that do give shriner's discounted rates on rooms. in november, i stayed at the clarion which was nice and before we stayed at the hampton inn on 12th street about 5 minutes from hospital and it was ok.>> Can someone tell me what the parent housing is like up in Erie? How are the rooms and bathrooms set up? We were planning to stay at the hotel, but now are thinking it's getting to be such a huge expense esp since I doubt we can drive home the night he is casted because it will be too late. We will have Noelle with us too...are siblings allowed to stay in the parent housing?> > I am supposed to call to let her know if we are going to stay or not. > > > Noelle (12-2-01)> Ian (8-15-04)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Seriously, Gail, I do worry sometimes that he will eat until he explodes! And it gets a little embarrassing when he's chasing other people for a bite off their plates. Thank goodness it only happens with family. If you ever saw him doing this, you might think I never feed him!!! mom to and Jake"Gail M. Kimball" <gmkimball@...> wrote: That is a cute nickname "Seagull" It is always good news when the kids are growing! Good for Jake! Gail Re: Re: Parent housing at Erie That's funny. I asked a nurse there if we could bring Jake's brother to stay in housing with us , and she said yes as long as they're pretty quiet. I guess it depends on who you ask. I'd ask again. Hmmm, mom to and Jaketh77381 <pthahn@...> wrote: we have been told all three trips that siblings are not allowed to stay in parent housing. however, you can request a list of hotels that do give shriner's discounted rates on rooms. in november, i stayed at the clarion which was nice and before we stayed at the hampton inn on 12th street about 5 minutes from hospital and it was ok.>> Can someone tell me what the parent housing is like up in Erie? How are the rooms and bathrooms set up? We were planning to stay at the hotel, but now are thinking it's getting to be such a huge expense esp since I doubt we can drive home the night he is casted because it will be too late. We will have Noelle with us too...are siblings allowed to stay in the parent housing?> > I am supposed to call to let her know if we are going to stay or not. > > > Noelle (12-2-01)> Ian (8-15-04)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Bert, Next time I complain about our 10 hour drive, I will think of you and Bridget making that very long journey on an airplane. God bless you both!!!! She's a lucky girl to have you for a mom. Smiles, mom to and Jakebert lehane <bert_lehane@...> wrote: Hi , Bridget started with a 38 degree curve and quite a bit of rotation. She had her first 2 casts in England and then we attended the first ETTP in SLC in May and have been going there ever since. She was 3 and a half when she had her first cast so we had missed the greatest growth period, under 2 yrs but her curve corrected very well, down to 8 degrees in her 4th cast. Her problem is that her curve is very flexible and springs back immediately when the cast is taken off. HOwever the casts have completely fixed her rotation and her rib hump is gone. She has just been diagnosed with a ctd (Ehlers Danlos) which sort of explains why her curve jumps back so quickly. When we went back in Nov I asked if she could have a break from casts over summer here and the docs agreed. HEr curve bounced back to 28 out of cast but could be pushed to 12 dgrees in her brace. She has worn the brace now for 6 weeks and we are trying to build up her trunk muscles with lots of physio exercises and swimming. We go back to SLC in March (hopefully) to see Dr D'Astous and see what progress we've made or ground we have lost. She will be 5 in Feb. We are so happy with what we have achieved with casting and I would have no hesitation in putting her back in a cast when she progresses again. I think the CTD means the process of keeping her straight will be longer for us but I will be guided by Dr D'Astous. Remember too we started much later than is ideal so we may have been able to be fixed in 18 months if we had started when she was younger but we didn't know about it then. In any case we are much better off than in Australia where they said we could do nothing. I must post a picture of Bridget's back without her cast. It's a shame no one in Aus does it yet but we are just so grateful that they are happy to treat us in SLC. Love Bert and Bridge Claflin <noellesmommy@...> wrote: Oh, Bert! Thank goodness you sought other treatment and I only just realized that you travel all the way from Australia to SLC. How do you do it?! Did they try to let her go longer in each cast so that you wouldn't have to make the trip so often? Also, what was her curve before casting and what is it now? Noelle (12-2-01)Ian (8-15-04) Re: Re: Parent housing at Erie That's funny. I asked a nurse there if we could bring Jake's brother to stay in housing with us , and she said yes as long as they're pretty quiet. I guess it depends on who you ask. I'd ask again. Hmmm, mom to and Jaketh77381 <pthahn@...> wrote: we have been told all three trips that siblings are not allowed to stay in parent housing. however, you can request a list of hotels that do give shriner's discounted rates on rooms. in november, i stayed at the clarion which was nice and before we stayed at the hampton inn on 12th street about 5 minutes from hospital and it was ok.>> Can someone tell me what the parent housing is like up in Erie? How are the rooms and bathrooms set up? We were planning to stay at the hotel, but now are thinking it's getting to be such a huge expense esp since I doubt we can drive home the night he is casted because it will be too late. We will have Noelle with us too...are siblings allowed to stay in the parent housing?> > I am supposed to call to let her know if we are going to stay or not. > > > Noelle (12-2-01)> Ian (8-15-04)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Thanks , Thankyou very much. Bridget is great on a plane but I bet she would be a pain in the neck if she was in a car for 10 hours. The longest car trip we have ever done is only 4 hours. A 10 hour drive is no picnic. Will you have both boys and any other adults to help? Bert Viveiros <jviv314@...> wrote: Bert, Next time I complain about our 10 hour drive, I will think of you and Bridget making that very long journey on an airplane. God bless you both!!!! She's a lucky girl to have you for a mom. Smiles, mom to and Jakebert lehane <bert_lehane@...> wrote: Hi , Bridget started with a 38 degree curve and quite a bit of rotation. She had her first 2 casts in England and then we attended the first ETTP in SLC in May and have been going there ever since. She was 3 and a half when she had her first cast so we had missed the greatest growth period, under 2 yrs but her curve corrected very well, down to 8 degrees in her 4th cast. Her problem is that her curve is very flexible and springs back immediately when the cast is taken off. HOwever the casts have completely fixed her rotation and her rib hump is gone. She has just been diagnosed with a ctd (Ehlers Danlos) which sort of explains why her curve jumps back so quickly. When we went back in Nov I asked if she could have a break from casts over summer here and the docs agreed. HEr curve bounced back to 28 out of cast but could be pushed to 12 dgrees in her brace. She has worn the brace now for 6 weeks and we are trying to build up her trunk muscles with lots of physio exercises and swimming. We go back to SLC in March (hopefully) to see Dr D'Astous and see what progress we've made or ground we have lost. She will be 5 in Feb. We are so happy with what we have achieved with casting and I would have no hesitation in putting her back in a cast when she progresses again. I think the CTD means the process of keeping her straight will be longer for us but I will be guided by Dr D'Astous. Remember too we started much later than is ideal so we may have been able to be fixed in 18 months if we had started when she was younger but we didn't know about it then. In any case we are much better off than in Australia where they said we could do nothing. I must post a picture of Bridget's back without her cast. It's a shame no one in Aus does it yet but we are just so grateful that they are happy to treat us in SLC. Love Bert and Bridge Claflin <noellesmommy@...> wrote: Oh, Bert! Thank goodness you sought other treatment and I only just realized that you travel all the way from Australia to SLC. How do you do it?! Did they try to let her go longer in each cast so that you wouldn't have to make the trip so often? Also, what was her curve before casting and what is it now? Noelle (12-2-01)Ian (8-15-04) Re: Re: Parent housing at Erie That's funny. I asked a nurse there if we could bring Jake's brother to stay in housing with us , and she said yes as long as they're pretty quiet. I guess it depends on who you ask. I'd ask again. Hmmm, mom to and Jaketh77381 <pthahn@...> wrote: we have been told all three trips that siblings are not allowed to stay in parent housing. however, you can request a list of hotels that do give shriner's discounted rates on rooms. in november, i stayed at the clarion which was nice and before we stayed at the hampton inn on 12th street about 5 minutes from hospital and it was ok.>> Can someone tell me what the parent housing is like up in Erie? How are the rooms and bathrooms set up? We were planning to stay at the hotel, but now are thinking it's getting to be such a huge expense esp since I doubt we can drive home the night he is casted because it will be too late. We will have Noelle with us too...are siblings allowed to stay in the parent housing?> > I am supposed to call to let her know if we are going to stay or not. > > > Noelle (12-2-01)> Ian (8-15-04)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Hi Bridge was diagnosed with Ehlers Danlos by a geneticist based on symptoms: hypermobile joints including pronated ankles, flat feet, fingers that easily push back past 90 degrees: chronic constipation and her scoliosis as well as the existence of these symptoms to a lesser degree in my husband our 9 yr old son and our 11 yr old daughter. All 3 out of 4 of our kids are scheduled to have an echo but we can't get in until March 30th. My husband had to have an echo as well. He didn't perform any other test as he felt the symptoms were obvious and the urine test has a 30% false negative rate. (figures may be hazy as the appt was 2 months ago) Remember it's only Ian's first cast so it is going to spring back to some extent. Try not to stress too much as I don't believe it means casting won't be the treatment of choice but knowing just means there is another little piece to the puzzle to work with. Good luck next week. Bert and Bridget PS I will have to change the name of this post as every time I see "Bert-growth spurt" it reminds me how much I shouldn't have eaten over xmas!!! Claflin <noellesmommy@...> wrote: Thanks for posting Bert. Ian's curve is extremely flexible as well. Dr. Khoury is worried that his curve is going to spring right back out of cast as well. I guess we'll find out next week. Ian sees a geneticist later this month to be checked for Ehlers-Danlos. How did they definitively diagnose Bridget with Ehlers-Danlos? Did they do some sort of test or did she just exhibit enough symptoms that they could say that she had it? Thanks for helping me with my questions. Noelle (12-2-01)Ian (8-15-04) Re: Re: Parent housing at Erie That's funny. I asked a nurse there if we could bring Jake's brother to stay in housing with us , and she said yes as long as they're pretty quiet. I guess it depends on who you ask. I'd ask again. Hmmm, mom to and Jaketh77381 <pthahn@...> wrote: we have been told all three trips that siblings are not allowed to stay in parent housing. however, you can request a list of hotels that do give shriner's discounted rates on rooms. in november, i stayed at the clarion which was nice and before we stayed at the hampton inn on 12th street about 5 minutes from hospital and it was ok.>> Can someone tell me what the parent housing is like up in Erie? How are the rooms and bathrooms set up? We were planning to stay at the hotel, but now are thinking it's getting to be such a huge expense esp since I doubt we can drive home the night he is casted because it will be too late. We will have Noelle with us too...are siblings allowed to stay in the parent housing?> > I am supposed to call to let her know if we are going to stay or not. > > > Noelle (12-2-01)> Ian (8-15-04)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Thanks for the info...it helps me to know what to expect! Noelle (12-2-01)Ian (8-15-04) Re: Re: Parent housing at Erie That's funny. I asked a nurse there if we could bring Jake's brother to stay in housing with us , and she said yes as long as they're pretty quiet. I guess it depends on who you ask. I'd ask again. Hmmm, mom to and Jaketh77381 <pthahn@...> wrote: we have been told all three trips that siblings are not allowed to stay in parent housing. however, you can request a list of hotels that do give shriner's discounted rates on rooms. in november, i stayed at the clarion which was nice and before we stayed at the hampton inn on 12th street about 5 minutes from hospital and it was ok.>> Can someone tell me what the parent housing is like up in Erie? How are the rooms and bathrooms set up? We were planning to stay at the hotel, but now are thinking it's getting to be such a huge expense esp since I doubt we can drive home the night he is casted because it will be too late. We will have Noelle with us too...are siblings allowed to stay in the parent housing?> > I am supposed to call to let her know if we are going to stay or not. > > > Noelle (12-2-01)> Ian (8-15-04)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Yes, BOTH boys are going, and fortunately my husband is driving!!! The DVD player is a huge help also, but Jake is not usually entertained for more than an hour with the TV unless it's Wiggles!! I think I've memorized every single song and dance bert lehane <bert_lehane@...> wrote: Thanks , Thankyou very much. Bridget is great on a plane but I bet she would be a pain in the neck if she was in a car for 10 hours. The longest car trip we have ever done is only 4 hours. A 10 hour drive is no picnic. Will you have both boys and any other adults to help? Bert Viveiros <jviv314@...> wrote: Bert, Next time I complain about our 10 hour drive, I will think of you and Bridget making that very long journey on an airplane. God bless you both!!!! She's a lucky girl to have you for a mom. Smiles, mom to and Jakebert lehane <bert_lehane@...> wrote: Hi , Bridget started with a 38 degree curve and quite a bit of rotation. She had her first 2 casts in England and then we attended the first ETTP in SLC in May and have been going there ever since. She was 3 and a half when she had her first cast so we had missed the greatest growth period, under 2 yrs but her curve corrected very well, down to 8 degrees in her 4th cast. Her problem is that her curve is very flexible and springs back immediately when the cast is taken off. HOwever the casts have completely fixed her rotation and her rib hump is gone. She has just been diagnosed with a ctd (Ehlers Danlos) which sort of explains why her curve jumps back so quickly. When we went back in Nov I asked if she could have a break from casts over summer here and the docs agreed. HEr curve bounced back to 28 out of cast but could be pushed to 12 dgrees in her brace. She has worn the brace now for 6 weeks and we are trying to build up her trunk muscles with lots of physio exercises and swimming. We go back to SLC in March (hopefully) to see Dr D'Astous and see what progress we've made or ground we have lost. She will be 5 in Feb. We are so happy with what we have achieved with casting and I would have no hesitation in putting her back in a cast when she progresses again. I think the CTD means the process of keeping her straight will be longer for us but I will be guided by Dr D'Astous. Remember too we started much later than is ideal so we may have been able to be fixed in 18 months if we had started when she was younger but we didn't know about it then. In any case we are much better off than in Australia where they said we could do nothing. I must post a picture of Bridget's back without her cast. It's a shame no one in Aus does it yet but we are just so grateful that they are happy to treat us in SLC. Love Bert and Bridge Claflin <noellesmommy@...> wrote: Oh, Bert! Thank goodness you sought other treatment and I only just realized that you travel all the way from Australia to SLC. How do you do it?! Did they try to let her go longer in each cast so that you wouldn't have to make the trip so often? Also, what was her curve before casting and what is it now? Noelle (12-2-01)Ian (8-15-04) Re: Re: Parent housing at Erie That's funny. I asked a nurse there if we could bring Jake's brother to stay in housing with us , and she said yes as long as they're pretty quiet. I guess it depends on who you ask. I'd ask again. Hmmm, mom to and Jaketh77381 <pthahn@...> wrote: we have been told all three trips that siblings are not allowed to stay in parent housing. however, you can request a list of hotels that do give shriner's discounted rates on rooms. in november, i stayed at the clarion which was nice and before we stayed at the hampton inn on 12th street about 5 minutes from hospital and it was ok.>> Can someone tell me what the parent housing is like up in Erie? How are the rooms and bathrooms set up? We were planning to stay at the hotel, but now are thinking it's getting to be such a huge expense esp since I doubt we can drive home the night he is casted because it will be too late. We will have Noelle with us too...are siblings allowed to stay in the parent housing?> > I am supposed to call to let her know if we are going to stay or not. > > > Noelle (12-2-01)> Ian (8-15-04)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Good luck. A 10 hour drive with 2 young boys gives a whole new meaning to "point yur finger and do the twist" doesn't it as that's the mother's job twisting around to sort out the battles and give out the drinks and food. By the time you get there they will need to fix your back. Bert Viveiros <jviv314@...> wrote: Yes, BOTH boys are going, and fortunately my husband is driving!!! The DVD player is a huge help also, but Jake is not usually entertained for more than an hour with the TV unless it's Wiggles!! I think I've memorized every single song and dance bert lehane <bert_lehane@...> wrote: Thanks , Thankyou very much. Bridget is great on a plane but I bet she would be a pain in the neck if she was in a car for 10 hours. The longest car trip we have ever done is only 4 hours. A 10 hour drive is no picnic. Will you have both boys and any other adults to help? Bert Viveiros <jviv314@...> wrote: Bert, Next time I complain about our 10 hour drive, I will think of you and Bridget making that very long journey on an airplane. God bless you both!!!! She's a lucky girl to have you for a mom. Smiles, mom to and Jakebert lehane <bert_lehane@...> wrote: Hi , Bridget started with a 38 degree curve and quite a bit of rotation. She had her first 2 casts in England and then we attended the first ETTP in SLC in May and have been going there ever since. She was 3 and a half when she had her first cast so we had missed the greatest growth period, under 2 yrs but her curve corrected very well, down to 8 degrees in her 4th cast. Her problem is that her curve is very flexible and springs back immediately when the cast is taken off. HOwever the casts have completely fixed her rotation and her rib hump is gone. She has just been diagnosed with a ctd (Ehlers Danlos) which sort of explains why her curve jumps back so quickly. When we went back in Nov I asked if she could have a break from casts over summer here and the docs agreed. HEr curve bounced back to 28 out of cast but could be pushed to 12 dgrees in her brace. She has worn the brace now for 6 weeks and we are trying to build up her trunk muscles with lots of physio exercises and swimming. We go back to SLC in March (hopefully) to see Dr D'Astous and see what progress we've made or ground we have lost. She will be 5 in Feb. We are so happy with what we have achieved with casting and I would have no hesitation in putting her back in a cast when she progresses again. I think the CTD means the process of keeping her straight will be longer for us but I will be guided by Dr D'Astous. Remember too we started much later than is ideal so we may have been able to be fixed in 18 months if we had started when she was younger but we didn't know about it then. In any case we are much better off than in Australia where they said we could do nothing. I must post a picture of Bridget's back without her cast. It's a shame no one in Aus does it yet but we are just so grateful that they are happy to treat us in SLC. Love Bert and Bridge Claflin <noellesmommy@...> wrote: Oh, Bert! Thank goodness you sought other treatment and I only just realized that you travel all the way from Australia to SLC. How do you do it?! Did they try to let her go longer in each cast so that you wouldn't have to make the trip so often? Also, what was her curve before casting and what is it now? Noelle (12-2-01)Ian (8-15-04) Re: Re: Parent housing at Erie That's funny. I asked a nurse there if we could bring Jake's brother to stay in housing with us , and she said yes as long as they're pretty quiet. I guess it depends on who you ask. I'd ask again. Hmmm, mom to and Jaketh77381 <pthahn@...> wrote: we have been told all three trips that siblings are not allowed to stay in parent housing. however, you can request a list of hotels that do give shriner's discounted rates on rooms. in november, i stayed at the clarion which was nice and before we stayed at the hampton inn on 12th street about 5 minutes from hospital and it was ok.>> Can someone tell me what the parent housing is like up in Erie? How are the rooms and bathrooms set up? We were planning to stay at the hotel, but now are thinking it's getting to be such a huge expense esp since I doubt we can drive home the night he is casted because it will be too late. We will have Noelle with us too...are siblings allowed to stay in the parent housing?> > I am supposed to call to let her know if we are going to stay or not. > > > Noelle (12-2-01)> Ian (8-15-04)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 As a parent it is our job to memorize The Wiggles! We took and to see them a few years ago, and all the parents were saying "And to think, we used to know The Stones, Bruce Springsteen, etc. Now it is "Fruit Salad, yummy, yummy!" lol Oh, Bert, yes, does like the Wiggles. gail Re: Re: Parent housing at Erie That's funny. I asked a nurse there if we could bring Jake's brother to stay in housing with us , and she said yes as long as they're pretty quiet. I guess it depends on who you ask. I'd ask again. Hmmm, mom to and Jaketh77381 <pthahn@...> wrote: we have been told all three trips that siblings are not allowed to stay in parent housing. however, you can request a list of hotels that do give shriner's discounted rates on rooms. in november, i stayed at the clarion which was nice and before we stayed at the hampton inn on 12th street about 5 minutes from hospital and it was ok.>> Can someone tell me what the parent housing is like up in Erie? How are the rooms and bathrooms set up? We were planning to stay at the hotel, but now are thinking it's getting to be such a huge expense esp since I doubt we can drive home the night he is casted because it will be too late. We will have Noelle with us too...are siblings allowed to stay in the parent housing?> > I am supposed to call to let her know if we are going to stay or not. > > > Noelle (12-2-01)> Ian (8-15-04)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 You are right and I think we own most of the Wiggles colection of videos. Poor old Bridget the 4th child never did get to hear as many wiggles in the car but she knows her share of the words to the older kid's music. However at home she is still a bit of a closet wiggles fan and a great dancer. Maybe we'll put them on every now and then in 10 years time just to remind ourselves when the kids are old and out partying. Let me know how this week's dance class goes. Bert"Gail M. Kimball" <gmkimball@...> wrote: As a parent it is our job to memorize The Wiggles! We took and to see them a few years ago, and all the parents were saying "And to think, we used to know The Stones, Bruce Springsteen, etc. Now it is "Fruit Salad, yummy, yummy!" lol Oh, Bert, yes, does like the Wiggles. gail Re: Re: Parent housing at Erie That's funny. I asked a nurse there if we could bring Jake's brother to stay in housing with us , and she said yes as long as they're pretty quiet. I guess it depends on who you ask. I'd ask again. Hmmm, mom to and Jaketh77381 <pthahn@...> wrote: we have been told all three trips that siblings are not allowed to stay in parent housing. however, you can request a list of hotels that do give shriner's discounted rates on rooms. in november, i stayed at the clarion which was nice and before we stayed at the hampton inn on 12th street about 5 minutes from hospital and it was ok.>> Can someone tell me what the parent housing is like up in Erie? How are the rooms and bathrooms set up? We were planning to stay at the hotel, but now are thinking it's getting to be such a huge expense esp since I doubt we can drive home the night he is casted because it will be too late. We will have Noelle with us too...are siblings allowed to stay in the parent housing?> > I am supposed to call to let her know if we are going to stay or not. > > > Noelle (12-2-01)> Ian (8-15-04)> Quote Link to comment Share on other sites More sharing options...
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