Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Hi Jen, Thank you for the update on Miles. I also am impressed by how group members reach out to other parents in their geographic area to help any way they can, so I hope they have been a great source of info and comfort for you, too! Close to 4 standard deviations from the norm does sound like he would definitely benefit from banding. I totally understand your concerns for working this treatment around surgeries, and trying to minimize any stress he may have. I'm sure they will work with you however your comfort level is regarding casting and fitting, if you decide to go with the band! Do let us know what Dr. says about Miles' situation next week. If you aren't going to be able to band (if you decide to do so) for 6 weeks or more, you will definitely want to try to successfully repo at nighttime if you possibly can. Miles' headshape has the potential to widen while nightsleeping on his flat area, which could make him even more standard deviations more off the norm than he already is. Are you able to incorporate any side sleeping at all? Do you have any memory foam under his head to at least cushion the back of his head? When you say that you are keeping him off his back as much as possible during the day, what times is he on his back? Some group members may have some tips for you that you can use! I just recently wrote a document " Repo'ing for Brachy Babies " and it is in the files/repo headquarters folder if you have time to check that out and see if it has any ideas you can use. Take care, and let me know if I can be of any help, Christie (Mom to Repo'd Remy) > Hi...I wrote last week about my son Miles and his brachy head. I > want to thank you all - especially the NJ moms...I live in Brick > (Ocean Cty) - for your responses of encouragement. This board moves > SO fast! I am about 30 digest behind and I think I'll just cut my > losses and start fresh! > > We had our appointment at CT in Paramus yesterday. I had myself > sort of convinced that his head wasn't THAT flat but not the case. > She said his numbers were more than 3, closer to 4 standard > deviations higher (away?) from " normal " and recommeded he get the > band. They said they could maybe work around his scheduled surgery > (Aug. 30) casting him before and putting it on after or something > like that. We took the pictures (he was perfect...he looked like a > little star! I think I'll take him for some 6 mo. pics tomorrow but > watch - for that he'll scream!) and were on our way. > > So, I think we are leaning towards doing it. My only hesitation is > compounding more stress upon him during the stressful time he has > the surgery. But, it is outpatient so he won't have to stay in the > hospital. People keep reminding me that he won't remember any of > this but that is little consolation. > > We made an appointment with a Dr. Hall, a craniofacial pediatrician > in , for next week. I thought it was so minor we wouldn't > need to go to him but if we are going to band him, I think it would > be good to get advice from an actual dr. SOOO....right now we wait > for the pics and info to come from CT and hopefully it comes in time > to take it to the dr. and THEN we wait to get the ball rolling. > Are we on the right track? Should I be doing anything in the mean > time? I keep him off his back as much as possible during the day but > he is still sleeping that way at night. > > Maybe we NJ moms can meet up someday at the Paramus mall....I was > there with my sis-in-law earlier in the summer and it is shoppers > paradise. Oddly enough, we got talking to a girl in the Starbucks > that had just come from what must have been CT getting her son > fitted for his band. Are any of you her? That would be TOO > coincidental! > > JEN (and Miles) in NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 Hello Jen Thank you for the update. I'm glad that you have found some other parents that were able to help. Sorry to hear that Miles was worse than you thought, but in a way it's good to know where you stand on this. CT doesn't recomend a band unless it's needed. Let us know how the appointment goes next week, and what they say. Sandy Willow's Mom Germany > Hi...I wrote last week about my son Miles and his brachy head. I > want to thank you all - especially the NJ moms...I live in Brick > (Ocean Cty) - for your responses of encouragement. This board moves > SO fast! I am about 30 digest behind and I think I'll just cut my > losses and start fresh! > > We had our appointment at CT in Paramus yesterday. I had myself > sort of convinced that his head wasn't THAT flat but not the case. > She said his numbers were more than 3, closer to 4 standard > deviations higher (away?) from " normal " and recommeded he get the > band. They said they could maybe work around his scheduled surgery > (Aug. 30) casting him before and putting it on after or something > like that. We took the pictures (he was perfect...he looked like a > little star! I think I'll take him for some 6 mo. pics tomorrow but > watch - for that he'll scream!) and were on our way. > > So, I think we are leaning towards doing it. My only hesitation is > compounding more stress upon him during the stressful time he has > the surgery. But, it is outpatient so he won't have to stay in the > hospital. People keep reminding me that he won't remember any of > this but that is little consolation. > > We made an appointment with a Dr. Hall, a craniofacial pediatrician > in , for next week. I thought it was so minor we wouldn't > need to go to him but if we are going to band him, I think it would > be good to get advice from an actual dr. SOOO....right now we wait > for the pics and info to come from CT and hopefully it comes in time > to take it to the dr. and THEN we wait to get the ball rolling. > Are we on the right track? Should I be doing anything in the mean > time? I keep him off his back as much as possible during the day but > he is still sleeping that way at night. > > Maybe we NJ moms can meet up someday at the Paramus mall....I was > there with my sis-in-law earlier in the summer and it is shoppers > paradise. Oddly enough, we got talking to a girl in the Starbucks > that had just come from what must have been CT getting her son > fitted for his band. Are any of you her? That would be TOO > coincidental! > > JEN (and Miles) in NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 Hi Jen - thanks for posting. You are so right on the 's Law of him not being cooperative for the professional pictures. HAHA! I'm glad that you have more information to make an informed decision. I can't remember, are you all set with insurance? If so, you are on the right track IMO. I also cannot remember how old Miles is but if there's anyway to have him sleep on his side at night that would be good. Christie wrote a great paper on repo for brachy babies. Sue Colin F., almost 10 mos. brachy STARband 6/29 Buffalo, NY > Are we on the right track? Should I be doing anything in the mean > time? I keep him off his back as much as possible during the day but > he is still sleeping that way at night. > > JEN (and Miles) in NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2004 Report Share Posted July 22, 2004 Thanks for the helpful information. I have a wedge and some velcro positioning things for the sides but haven't done a lot of repo- ing. Is there some product I can get that would still let him sleep on his back or should I make a concerted effort to get him used to side sleeping? I don't know what to do with the memory foam but am willing to buy or make anything that would help him stay at the same level. During the day I try to keep him upright (like in my arms or on my lap or in the exersaucer or jumper) or on his stomach but I like to take him out during the day and of course, then he is in the carrier. And of course sometimes I have to put him down in the highchair or swing to get a shower or do SOMETHING around the house (the cleaning lady quit...ha ha) Is there something to prop his head in those situations? The document you wrote is great...so comprehensive! But I'm feeling so overwhelmed right now I can't seem to narrow it down to what might be most useful right now. Well, I'm off to try and put him on his side now that he's asleep...we'll see how that works. JEN and Miles in NJ > > Hi...I wrote last week about my son Miles and his brachy head. I > > want to thank you all - especially the NJ moms...I live in Brick > > (Ocean Cty) - for your responses of encouragement. This board > moves > > SO fast! I am about 30 digest behind and I think I'll just cut my > > losses and start fresh! > > > > We had our appointment at CT in Paramus yesterday. I had myself > > sort of convinced that his head wasn't THAT flat but not the > case. > > She said his numbers were more than 3, closer to 4 standard > > deviations higher (away?) from " normal " and recommeded he get the > > band. They said they could maybe work around his scheduled > surgery > > (Aug. 30) casting him before and putting it on after or something > > like that. We took the pictures (he was perfect...he looked like > a > > little star! I think I'll take him for some 6 mo. pics tomorrow > but > > watch - for that he'll scream!) and were on our way. > > > > So, I think we are leaning towards doing it. My only hesitation > is > > compounding more stress upon him during the stressful time he has > > the surgery. But, it is outpatient so he won't have to stay in > the > > hospital. People keep reminding me that he won't remember any of > > this but that is little consolation. > > > > We made an appointment with a Dr. Hall, a craniofacial > pediatrician > > in , for next week. I thought it was so minor we > wouldn't > > need to go to him but if we are going to band him, I think it > would > > be good to get advice from an actual dr. SOOO....right now we wait > > for the pics and info to come from CT and hopefully it comes in > time > > to take it to the dr. and THEN we wait to get the ball rolling. > > Are we on the right track? Should I be doing anything in the mean > > time? I keep him off his back as much as possible during the day > but > > he is still sleeping that way at night. > > > > Maybe we NJ moms can meet up someday at the Paramus mall....I was > > there with my sis-in-law earlier in the summer and it is shoppers > > paradise. Oddly enough, we got talking to a girl in the Starbucks > > that had just come from what must have been CT getting her son > > fitted for his band. Are any of you her? That would be TOO > > coincidental! > > > > JEN (and Miles) in NJ Quote Link to comment Share on other sites More sharing options...
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