Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 Thank you!! We need all the prayers we can get! As for the time...I don't know, I swear the MD said something about 16 hrs a day...but I very well may be imagining this. My husband does not recall it, so we shall see. Yes. I agree, Matt and I had a long talk last night, that whatever the MD recommends for time "on"...we make a pattern and stick to it! We pretty much parent like that. We do follow a schedule for Jack's "routine" so this will just be something to add to that routine. Jack is not a crier. As I have mentioned he is a pretty agreeable kid, he doesn't try to get away with much; but who knows with this type of situation it may change!!??~KristaJack's Mom, Jack is 23 months old and is getting his first brace from Shriners Hospital in Salt Lake City, Utah--- Subject: Re: KristaTo: infantile_scoliosis Date: Monday, June 15, 2009, 5:44 PM The only other thing I would say is don't give in to the cries for wanting it off IF that is the case. Let him know from the get go that the brace is like the cast.......it must stay on all day and night. Well of course it comes off a little. Will he be wearing it full time/23 hrs.? You will do what you have to do and make your own rule for Jack. Distract him when he cries. If you take it off when he cries he will associate crying with getting to take it off.We always did the bright, new shiny toy. Anything to make it special. And of course we made a BIG deal out of the brace. Good luck.....I will be praying for him. And YOU! This is just another part of the journey and it will all work out.Can't wait to hear how it goes.TashaMommy of 4 year old twin boys- and Fort Worth, Texas is currently in a brace at night.Casting 14 months.You can read 's story at....http://www.infantil escoliosis. org/stories. html From: alexmaxmomatt (DOT) net <alexmaxmomatt (DOT) net>Subject: [infantile_scoliosi s] Leaving for Chicago tomorrow...To: infantile_scoliosis @yahoogroups. comDate: Monday, June 15, 2009, 12:33 AM Hi all!Well, we are leaving tomorrow for Chicago and cast #2! Having mixed emotions today but no need to go into details, everyone here understands! Max has to be at Shriners at 6:00am on Tuesday so we are going down tomorrow afternoon and going to navy pier and out to dinner. Should be a good time! I will post after we get settled back at home. Please say a little prayer for Max on Tuesday!Cara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 Hi Krista,We were told to wear ours 23 hours a day, but PT, swimming, gymnastics doesn't count against that time. Keira has never cried about the brace itself, she just cried the 1st day because she was tired and wanted to leave.SLC marked the straps, that was a big help. Also, if you can leave the brace on for as long as possible between when you leave and the next morning for the 'check'. This will show them where the brace needs to be adjusted. In our case, Keira's brace is identical to the cast, they have lots of padding trying to push on her rib hump. But it was too much pressure and they had to remove some padding. (But we are on a cast-break, not transitioning to the brace permanently) One thing I want to warn you about was diapering. Keira's brace comes down much lower over her bottom then the cast and it flares out on one side, this made night-time diapering a challenge, we had several leaks the first few nights. That is a bummer because you have to take off the brace/shirt and then put on clean shirt/brace in the middle of the night. The challenge is trying to get the diaper under the brace. I know some parents loosen the brace for this, but Keira is asleep when we put her diaper on at night and the "unvelcoring" isn't easy when they are sound asleep.Using the bathroom was a new challenge for Keira in the brace, since it sits so low and she also can't pull up her panties. She actually needs assistance in the bathroom that she didn't need in the cast.These aren't major things, just something you might want to know about so you are prepared. For us, the brace has some challenges, not the walk in the park I thought it was going to be. BUT, swimming everyday and being able to wash the t-shirt are big pluses. You are in good hands in SLC!Liz From: alexmaxmomatt (DOT) net <alexmaxmomatt (DOT) net>Subject: [infantile_scoliosi s] Leaving for Chicago tomorrow...To: infantile_scoliosis @yahoogroups. comDate: Monday, June 15, 2009, 12:33 AM Hi all!Well, we are leaving tomorrow for Chicago and cast #2! Having mixed emotions today but no need to go into details, everyone here understands! Max has to be at Shriners at 6:00am on Tuesday so we are going down tomorrow afternoon and going to navy pier and out to dinner. Should be a good time! I will post after we get settled back at home. Please say a little prayer for Max on Tuesday!Cara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 Liz, Yes, I talked to my husband about the fact that the brace does need to stay on as much as possible while we are in SLC before the next day "MD check", so we can see if there are any red marks, rubbing etc. Swimming in the indoor pool will have to be cut short. I soooo hope it is not lower than the cast, but if it is...can they "shave it"??? I have no idea how the adjusting and re- adjusting works?? Does the next day ck with the MD take long? I'm a little nervous about time. I am kinda hoping that this ck is really just that, a check. I just got a call from SLC confirming our clinic appt for Wed. at 9:30am, but with my calculations we really need to leave for the AP at 10am. I think we are just going to get there at 8 am ck in get a pager and have breakfast to give everyone and the process as much time as possible. Does that sound good? I am not expected a "walk in the park"....hence the nervousness, but the excitement of the next step/graduation is not lost on me....this is huge! I swear and maybe it was a dream...I truly do not know, but I really think I remember asking the MD, "does Jack have to wear the cast 22- 24 hrs a day and he said, "oh no, more like 16 hrs." Once again it very well may be me having a blackout, I guess we will soon find out. Thanks for your insight. ~KristaJack's Mom, Jack is 22 months old in his 3rd cast from Shriners Hospital in Salt Lake City, Utah From: alexmaxmomatt (DOT) net <alexmaxmomatt (DOT) net>Subject: [infantile_scoliosi s] Leaving for Chicago tomorrow...To: infantile_scoliosis @yahoogroups. comDate: Monday, June 15, 2009, 12:33 AM Hi all!Well, we are leaving tomorrow for Chicago and cast #2! Having mixed emotions today but no need to go into details, everyone here understands! Max has to be at Shriners at 6:00am on Tuesday so we are going down tomorrow afternoon and going to navy pier and out to dinner. Should be a good time! I will post after we get settled back at home. Please say a little prayer for Max on Tuesday!Cara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2009 Report Share Posted June 15, 2009 Hi Krista, Just wanted to time in on the check...it depends on if Jack has any rub areas. It could take awhile or not long at all - it just depends. Noah had to (and still has to) wear his brace 21-23 hrs a day. The 16-17 hours a day sounds like when you start to wean. That's our case anyway. Good luck with everything!~Noah 3 1/2 years old9 months of casting in SLCCurrently on month 15 of bracing To: infantile_scoliosis From: kmsloan18@...Date: Mon, 15 Jun 2009 13:59:32 -0700Subject: Re: Krista Liz, Yes, I talked to my husband about the fact that the brace does need to stay on as much as possible while we are in SLC before the next day "MD check", so we can see if there are any red marks, rubbing etc. Swimming in the indoor pool will have to be cut short. I soooo hope it is not lower than the cast, but if it is...can they "shave it"??? I have no idea how the adjusting and re- adjusting works?? Does the next day ck with the MD take long? I'm a little nervous about time. I am kinda hoping that this ck is really just that, a check. I just got a call from SLC confirming our clinic appt for Wed. at 9:30am, but with my calculations we really need to leave for the AP at 10am. I think we are just going to get there at 8 am ck in get a pager and have breakfast to give everyone and the process as much time as possible. Does that sound good? I am not expected a "walk in the park"....hence the nervousness, but the excitement of the next step/graduation is not lost on me....this is huge! I swear and maybe it was a dream...I truly do not know, but I really think I remember asking the MD, "does Jack have to wear the cast 22- 24 hrs a day and he said, "oh no, more like 16 hrs." Once again it very well may be me having a blackout, I guess we will soon find out. Thanks for your insight. ~KristaJack's Mom, Jack is 22 months old in his 3rd cast from Shriners Hospital in Salt Lake City, Utah From: alexmaxmomatt (DOT) net <alexmaxmomatt (DOT) net>Subject: [infantile_scoliosi s] Leaving for Chicago tomorrow...To: infantile_scoliosis @yahoogroups. comDate: Monday, June 15, 2009, 12:33 AM Hi all!Well, we are leaving tomorrow for Chicago and cast #2! Having mixed emotions today but no need to go into details, everyone here understands! Max has to be at Shriners at 6:00am on Tuesday so we are going down tomorrow afternoon and going to navy pier and out to dinner. Should be a good time! I will post after we get settled back at home. Please say a little prayer for Max on Tuesday!Cara Windows Live™: Keep your life in sync. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2009 Report Share Posted June 16, 2009 Hi Krista,It might be that Jack only needs to wear it 16 hours, since you are looking to 'hold' and Keira is still needing correction. (The ortho guy told me ideally you should shoot for 17-22 hours/day and that they say 23 hours, figuring most people will slack off to somewhere between 17-22). After awhile they will start to wean Jack to nighttime only.Are you folks only staying 1 night? They had us on the same 3 day routine as the cast: fly in cut off cast, the next morning have a brace fitting, then an xray/doctor check and then we went back for more adjustments that afternoon. (They look at how it is fitting in the xray) And then we stayed over night and the next morning the orthotics guy adjusted the brace further. (Again, this might be because Keira's brace is acting as a "cast" and they are still trying to get correction.)Are you getting the brace fitted tomorrow? I believe Dr. D is in surgery on tuesdays, so that is likely why you have to wait to see him until Wednesday. I assume they will take an xray on Tuesday. The Dr. will look at the xray and most likely the brace fit. I would ask if you can be seen earlier, because if they need to make adjustments you have to be squeezed into the orthotic dept, did they give you an orthotics appointment for Wednesday? The Dr wanted adjustments to our brace on the 1st day and we had to wait until after lunch and then they squeezed us in. Perhaps you should call Angie and make sure she knows you need to leave by 10 to catch a plane.Liz From: alexmaxmomatt (DOT) net <alexmaxmomatt (DOT) net>Subject: [infantile_scoliosi s] Leaving for Chicago tomorrow...To: infantile_scoliosis @yahoogroups. comDate: Monday, June 15, 2009, 12:33 AM Hi all!Well, we are leaving tomorrow for Chicago and cast #2! Having mixed emotions today but no need to go into details, everyone here understands! Max has to be at Shriners at 6:00am on Tuesday so we are going down tomorrow afternoon and going to navy pier and out to dinner. Should be a good time! I will post after we get settled back at home. Please say a little prayer for Max on Tuesday!Cara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2009 Report Share Posted June 16, 2009 Krista, Again, just wishing you, Jack and hubby the best possible experience in SLC!!! It seems very far away for us to go from cast to brace, but I'm sure we'll have all of the concerns you do. Jack is a cutie patootie tough customer, he'll do great! ; )Heidi, Bexon's Mama, (23 months old, in 2nd cast from Salt Lake City Shriners, currently down from 61 degrees to 29) From: alexmaxmomatt (DOT) net <alexmaxmomatt (DOT) net>Subject: [infantile_scoliosi s] Leaving for Chicago tomorrow...To: infantile_scoliosis @yahoogroups. comDate: Monday, June 15, 2009, 12:33 AM Hi all!Well, we are leaving tomorrow for Chicago and cast #2! Having mixed emotions today but no need to go into details, everyone here understands! Max has to be at Shriners at 6:00am on Tuesday so we are going down tomorrow afternoon and going to navy pier and out to dinner. Should be a good time! I will post after we get settled back at home. Please say a little prayer for Max on Tuesday!Cara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2009 Report Share Posted June 16, 2009 I'm sure all will go well. Isabella is still wearing the brace until she gets casted ( the doctor said it couldn't hurt), and when we take it off for short breaks, she brings it to us to put back on. Patty, mom of Isabella, 21 months old, in useless brace & deciding what to do nextTo: infantile_scoliosis Sent: Monday, June 15, 2009 2:06:50 PMSubject: Re: Krista Thank you!! We need all the prayers we can get! As for the time...I don't know, I swear the MD said something about 16 hrs a day...but I very well may be imagining this. My husband does not recall it, so we shall see. Yes. I agree, Matt and I had a long talk last night, that whatever the MD recommends for time "on"...we make a pattern and stick to it! We pretty much parent like that. We do follow a schedule for Jack's "routine" so this will just be something to add to that routine. Jack is not a crier. As I have mentioned he is a pretty agreeable kid, he doesn't try to get away with much; but who knows with this type of situation it may change!!??~KristaJack's Mom, Jack is 23 months old and is getting his first brace from Shriners Hospital in Salt Lake City, Utah--- On Mon, 6/15/09, Tasha Fontenot <ryanswalkyahoo (DOT) com> wrote: From: Tasha Fontenot <ryanswalkyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] KristaTo: infantile_scoliosis @yahoogroups. comDate: Monday, June 15, 2009, 5:44 PM The only other thing I would say is don't give in to the cries for wanting it off IF that is the case. Let him know from the get go that the brace is like the cast.......it must stay on all day and night. Well of course it comes off a little. Will he be wearing it full time/23 hrs.? You will do what you have to do and make your own rule for Jack. Distract him when he cries. If you take it off when he cries he will associate crying with getting to take it off.We always did the bright, new shiny toy. Anything to make it special. And of course we made a BIG deal out of the brace. Good luck.....I will be praying for him. And YOU! This is just another part of the journey and it will all work out.Can't wait to hear how it goes.TashaMommy of 4 year old twin boys- and Fort Worth, Texas is currently in a brace at night.Casting 14 months.You can read 's story at....http://www.infantil escoliosis. org/stories. html From: alexmaxmomatt (DOT) net <alexmaxmomatt (DOT) net>Subject: [infantile_scoliosi s] Leaving for Chicago tomorrow...To: infantile_scoliosis @yahoogroups. comDate: Monday, June 15, 2009, 12:33 AM Hi all!Well, we are leaving tomorrow for Chicago and cast #2! Having mixed emotions today but no need to go into details, everyone here understands! Max has to be at Shriners at 6:00am on Tuesday so we are going down tomorrow afternoon and going to navy pier and out to dinner. Should be a good time! I will post after we get settled back at home. Please say a little prayer for Max on Tuesday!Cara Quote Link to comment Share on other sites More sharing options...
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