Guest guest Posted May 28, 2001 Report Share Posted May 28, 2001 Hi Michiganders. I'm relatively new to this list but it seems that there are quite a few from MI. Are there any support groups here for apraxic children? Mom to (30 months developmentally delayed with possible apraxia) and (11 months with too much energy for me!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 Hello, I was just curious if there were any people in the USA that live in Michigan? I really have never come across this with anyone and have never seen another child with this except for on this site!! Thanks Karla Mesman Hudsonville MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2006 Report Share Posted October 3, 2006 Thank you for the document, that did help a little bit!! I did respond to a girl at WMU and that is only 1 hour from me, so now we have been talking!! Thanks for your help again, KarlaShireen Mohandes <andy.bowles@...> wrote: Dear Karla I am attaching a Word document that lists all the people in the USA who have chosen to put their information in the database. The information is always available on the regular site - under "Database". However, I have put it into a format that is more easy to look at. Please remember that many people are a member of this group, but either have not got round to putting information about themselves, or have preferred not to do so. I hope that by looking at this list you are able to find people near where you live. I would like to encourage other members of this group to add information about themselves. I totally respect your decision, whatever that may be. Take care Shireen Mohandes London, England From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of marcmommySent: 01 October 2006 22:47blepharophimosis Subject: blepharophimosis Michigan Hello, I was just curious if there were any people in the USA that live in Michigan? I really have never come across this with anyone and have never seen another child with this except for on this site!!ThanksKarla MesmanHudsonville MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 Karla, My name is Nicki and I am from Indiana and my daughter has just been diagnosed and is already scheduled for surgery on 10/24/06. I was referred to Riley Hospital in Indianapolis, IN. If you have any questions, let me know. Avery has pictures at the photo site. Nicki > Dear Karla > I am attaching a Word document that lists all the people in the USA who have chosen to put their information in the database. > > The information is always available on the regular site - under " Database " . > However, I have put it into a format that is more easy to look at. > > > Please remember that many people are a member of this group, but either have not got round to putting information about themselves, or have preferred not to do so. > > I hope that by looking at this list you are able to find people near where you live. > > I would like to encourage other members of this group to add information about themselves. I totally respect your decision, whatever that may be. > > Take care > Shireen Mohandes > London, England > > > --------------------------------- > From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of marcmommy > Sent: 01 October 2006 22:47 > blepharophimosis > Subject: blepharophimosis Michigan > > > > Hello, I was just curious if there were any people in the USA that > live in Michigan? I really have never come across this with anyone > and have never seen another child with this except for on this site!! > Thanks > Karla Mesman > Hudsonville MI > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 Oh my goodness Nicki your daughter is beautiful and she looks an awful lot like my son when he was a baby!! How old is Avery right now? Are they putting slings in right now or are they just widening the eye opening? My son Marcus J had surgery at age 1 year for the widening and has not had slings yet!! They are now thinking about doing the slings at age 5 because his face has developed!! Is Avery seeing okay, she looks like she does well in the pictures? Is this your first child and have you had any of BPES in your family before? I will wait to hear back from you!! Thanks for writing and if you have any other questions let me know! Thanks Karla Mesman Hudsonville MI venables72 <venables72@...> wrote: Karla,My name is Nicki and I am from Indiana and my daughter has just been diagnosed and is already scheduled for surgery on 10/24/06. I was referred to Riley Hospital in Indianapolis, IN. If you have any questions, let me know. Avery has pictures at the photo site.Nicki> Dear Karla> I am attaching a Word document that lists all the people in the USA who have chosen to put their information in the database.> > The information is always available on the regular site - under "Database".> However, I have put it into a format that is more easy to look at.> > > Please remember that many people are a member of this group, but either have not got round to putting information about themselves, or have preferred not to do so.> > I hope that by looking at this list you are able to find people near where you live.> > I would like to encourage other members of this group to add information about themselves. I totally respect your decision, whatever that may be.> > Take care> Shireen Mohandes> London, England> > > ---------------------------------> From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of marcmommy> Sent: 01 October 2006 22:47> blepharophimosis > Subject: blepharophimosis Michigan> > > > Hello, I was just curious if there were any people in the USA that > live in Michigan? I really have never come across this with anyone > and have never seen another child with this except for on this site!!> Thanks> Karla Mesman> Hudsonville MI> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2006 Report Share Posted October 9, 2006 Karla, Avery will be 3months this thursday. She opens her eyes pretty well, but I just do not want her vision compromised. The doctors at Riley Hospital stated that she will have the sling put in and they will wait for the widening until her face develops. They believe it is in the best interest of her to wait on the widening. I will be sure to post the after surgery pictures. Do you have any pictures of Marcus J before and after? I am really curious how the widening works. This is my first child and NO ONE in my family or my husbands family has ever had or even heard of BPES. Please let me know when Marcus J will be scheduled for slings or does he need them? Nicki Venable Fort Wayne, IN > > Dear Karla > > I am attaching a Word document that lists all the people in the > USA who have chosen to put their information in the database. > > > > The information is always available on the regular site - > under " Database " . > > However, I have put it into a format that is more easy to look > at. > > > > > > Please remember that many people are a member of this group, but > either have not got round to putting information about themselves, > or have preferred not to do so. > > > > I hope that by looking at this list you are able to find people > near where you live. > > > > I would like to encourage other members of this group to add > information about themselves. I totally respect your decision, > whatever that may be. > > > > Take care > > Shireen Mohandes > > London, England > > > > > > --------------------------------- > > From: blepharophimosis > [mailto:blepharophimosis ] On Behalf Of marcmommy > > Sent: 01 October 2006 22:47 > > blepharophimosis > > Subject: blepharophimosis Michigan > > > > > > > > Hello, I was just curious if there were any people in the USA > that > > live in Michigan? I really have never come across this with anyone > > and have never seen another child with this except for on this > site!! > > Thanks > > Karla Mesman > > Hudsonville MI > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2006 Report Share Posted October 9, 2006 Karla, I just found your pictures of Marcus J.---how handsome. His surgery really made him look wonderful. It looks like all he needs is the slings...wow he looks great!!! How was the widening surgery? Was he in pain, did you insurance cover the procedure or was it considered cosmetic? Hope these are not too personal of questions. My insurance is covering the slings and I hope that if widening is necessary that they will cover as well. If they do not, I will still allow her to have the procedure. Nicki Venable Fort Wayne, IN > > Dear Karla > > I am attaching a Word document that lists all the people in the > USA who have chosen to put their information in the database. > > > > The information is always available on the regular site - > under " Database " . > > However, I have put it into a format that is more easy to look > at. > > > > > > Please remember that many people are a member of this group, but > either have not got round to putting information about themselves, > or have preferred not to do so. > > > > I hope that by looking at this list you are able to find people > near where you live. > > > > I would like to encourage other members of this group to add > information about themselves. I totally respect your decision, > whatever that may be. > > > > Take care > > Shireen Mohandes > > London, England > > > > > > --------------------------------- > > From: blepharophimosis > [mailto:blepharophimosis ] On Behalf Of marcmommy > > Sent: 01 October 2006 22:47 > > blepharophimosis > > Subject: blepharophimosis Michigan > > > > > > > > Hello, I was just curious if there were any people in the USA > that > > live in Michigan? I really have never come across this with anyone > > and have never seen another child with this except for on this > site!! > > Thanks > > Karla Mesman > > Hudsonville MI > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2006 Report Share Posted October 10, 2006 Nicki- Thanks for writing, Yes, Marcus does need the slings but I think Avery's openings are actually wider than Marcus' were at birth. They were more concerned for his openings at the time than slings. All doctors do it differently, it is just interesting how we happen to be backwards with our kids. Marcus does see very well and has had check ups since he was a newborn every 6 mos. We are very pleased with Dr. Droste in Grand Rapids and Dr. Mann the plastic surgeon. We go and see Dr. Mann on Oct. 19th and we'll see what time frame were looking at for slings. He did a great job on the widening of his eyes at age 1 but he still needs to have them widened more and the slings put in also!! I will have more info. on Oct 19th!! I have Marcus J. posted on the photos and you can see at about 3 mos. old that his eyes are smaller than Averys are, but they still have that same look!! I just love the way he looks now, it is hard to imagine him in any other way, but we only do what is best for our children!! It is just hard all the way around! Well good talking, let me know how everything else goes! Karla MesmanMike and Nicki Venable <venables72@...> wrote: Karla,Avery will be 3months this thursday. She opens her eyes pretty well, but I just do not want her vision compromised. The doctors at Riley Hospital stated that she will have the sling put in and they will wait for the widening until her face develops. They believe it is in the best interest of her to wait on the widening. I will be sure to post the after surgery pictures. Do you have any pictures of Marcus J before and after? I am really curious how the widening works. This is my first child and NO ONE in my family or my husbands family has ever had or even heard of BPES. Please let me know when Marcus J will be scheduled for slings or does he need them?Nicki VenableFort Wayne, IN> > Dear Karla> > I am attaching a Word document that lists all the people in the > USA who have chosen to put their information in the database.> > > > The information is always available on the regular site - > under "Database".> > However, I have put it into a format that is more easy to look > at.> > > > > > Please remember that many people are a member of this group, but > either have not got round to putting information about themselves, > or have preferred not to do so.> > > > I hope that by looking at this list you are able to find people > near where you live.> > > > I would like to encourage other members of this group to add > information about themselves. I totally respect your decision, > whatever that may be.> > > > Take care> > Shireen Mohandes> > London, England> > > > > > ---------------------------------> > From: blepharophimosis > [mailto:blepharophimosis ] On Behalf Of marcmommy> > Sent: 01 October 2006 22:47> > blepharophimosis > > Subject: blepharophimosis Michigan> > > > > > > > Hello, I was just curious if there were any people in the USA > that > > live in Michigan? I really have never come across this with anyone > > and have never seen another child with this except for on this > site!!> > Thanks> > Karla Mesman> > Hudsonville MI> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2006 Report Share Posted October 10, 2006 Oh good I am glad that you found them!! Yea we think it did him good, but he still does need to have them widened again, but they can do all of it at the same time!! Nicki, he was the best baby ever after surgery, he was really crabby at first because of the anistesia but after that he acted like nothing was wrong, he had to wear no..no's..(Arm restrictors) and he did not like those, but he figured out how to get them off after about 3 days, so his eyes were pretty healed by then!! I think you will be surprised how well Avery will handle it, they always seem to be better than the parents. My husband and I were wrecks, but he helped us by being so tough!! Thanks Karla les72@...> wrote: Karla,I just found your pictures of Marcus J.---how handsome. His surgery really made him look wonderful. It looks like all he needs is the slings...wow he looks great!!! How was the widening surgery? Was he in pain, did you insurance cover the procedure or was it considered cosmetic? Hope these are not too personal of questions. My insurance is covering the slings and I hope that if widening is necessary that they will cover as well. If they do not, I will still allow her to have the procedure.Nicki VenableFort Wayne, IN> > Dear Karla> > I am attaching a Word document that lists all the people in the > USA who have chosen to put their information in the database.> > > > The information is always available on the regular site - > under "Database".> > However, I have put it into a format that is more easy to look > at.> > > > > > Please remember that many people are a member of this group, but > either have not got round to putting information about themselves, > or have preferred not to do so.> > > > I hope that by looking at this list you are able to find people > near where you live.> > > > I would like to encourage other members of this group to add > information about themselves. I totally respect your decision, > whatever that may be.> > > > Take care> > Shireen Mohandes> > London, England> > > > > > ---------------------------------> > From: blepharophimosis > [mailto:blepharophimosis ] On Behalf Of marcmommy> > Sent: 01 October 2006 22:47> > blepharophimosis > > Subject: blepharophimosis Michigan> > > > > > > > Hello, I was just curious if there were any people in the USA > that > > live in Michigan? I really have never come across this with anyone > > and have never seen another child with this except for on this > site!!> > Thanks> > Karla Mesman> > Hudsonville MI> >> Quote Link to comment Share on other sites More sharing options...
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