Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 Hello to all the new families.... its been quite a while since i have logged on...i have a new job and its keeping quite busy.... Layla is doing so well....she and mommy/daddy will be doing the buddy walk over here in san antonio its 10/07...my family has been very supportive...which is great Layla has got quite the temper...and she mocks us so well..she knows how to say no.no.with her finger in the air...she knows that she is going to be 1..i must ask her a million times a day " how old are you? " her birthday is coming up in sept, i thought i would start off a little early but she picked it up really fast...she has such a great humor..the other day daddy burped out loud, and layla just starred at him and then imitated him..it was too funny so now she is constantly burping outloud...its amazing to see her grow so much... her dr's appointment is coming up in september to determine when she will have her heart surgery...so i am a little stressed...yikes.. well got to get to bed...but its always great to be in touch...god bless you... peace, gina layla's mommy (mds/acv defect) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 Hey I was thinking about attending the San buddy walk but I am not yet sure that I can. I have been there in the past and it is a FANTASTIC event! The people of the DSASA are really great and they always have a great time. If I can not attend, would you be interested in passing out some brochures for IMDSA? Kristy ginamlimn wrote: Hello to all the new families.... its been quite a while since i have logged on...i have a new job and its keeping quite busy.... Layla is doing so well....she and mommy/daddy will be doing the buddy walk over here in san antonio its 10/07...my family has been very supportive...which is great Layla has got quite the temper...and she mocks us so well..she knows how to say no.no.with her finger in the air...she knows that she is going to be 1..i must ask her a million times a day " how old are you? " her birthday is coming up in sept, i thought i would start off a little early but she picked it up really fast...she has such a great humor..the other day daddy burped out loud, and layla just starred at him and then imitated him..it was too funny so now she is constantly burping outloud...its amazing to see her grow so much... her dr's appointment is coming up in september to determine when she will have her heart surgery...so i am a little stressed...yikes.. well got to get to bed...but its always great to be in touch...god bless you... peace, gina layla's mommy (mds/acv defect) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2007 Report Share Posted September 23, 2007 Hi there Welcome back, i can't believe its been that long When you get organised you'll have to send in another picture of Ciprian to me. He was only a toddler in the last photo!!!! As cute as he was!!.. Its good to hear how school is going Cya adriana stroe wrote: Hi Kristy and everyone, First of all I want to thank you for the warm welcome.I'm so sorry I didn't write all these years,but I moved to a new house which we constructed alone and I didn't have time to write and after we moved I didn't have internet above 2 years. I'm glad I'm back and I could contact you.Ciprian is born in march 06 2001 and at his birth the doctor told us he is MDS.Now he is 6 years old and he's going to a normal kindergarden where he feels good and he likes the company of other children.I'm usually verry occupied with work and with the 2 childs which I take them to kindergarden/school (Ciprian and Andrei).Ciprian is quite ok but he doesn't want to speak. My E-Mail address is: adriana.nico@... or sandustr@... . Warm regards to all, PS Sorry for my english. __________________________________________________________ Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. http://get.games.yahoo.com/proddesc?gamekey=monopolyherenow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2007 Report Share Posted September 23, 2007 Sorry , In case you dont have the email address to send photos to anymore - mosaicdownsyndrome@... Cya from Twomey wrote: Hi there Welcome back, i can't believe its been that long When you get organised you'll have to send in another picture of Ciprian to me. He was only a toddler in the last photo!!!! As cute as he was!!.. Its good to hear how school is going Cya adriana stroe wrote: Hi Kristy and everyone, First of all I want to thank you for the warm welcome.I'm so sorry I didn't write all these years,but I moved to a new house which we constructed alone and I didn't have time to write and after we moved I didn't have internet above 2 years. I'm glad I'm back and I could contact you.Ciprian is born in march 06 2001 and at his birth the doctor told us he is MDS.Now he is 6 years old and he's going to a normal kindergarden where he feels good and he likes the company of other children.I'm usually verry occupied with work and with the 2 childs which I take them to kindergarden/school (Ciprian and Andrei).Ciprian is quite ok but he doesn't want to speak. My E-Mail address is: adriana.nico@... or sandustr@... . Warm regards to all, PS Sorry for my english. __________________________________________________________ Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. http://get.games.yahoo.com/proddesc?gamekey=monopolyherenow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Welcome back, it is good that you and Ciprian could rejoin our group. I am , I am the father of Isabelle who is 3 1/2 and was diagnosed with MDS aver a year ago. I am the new International Vice President of IMDSA, so I look forward to speaking to you about how we can spread the word in Romania about MDS and IMDSA. Again, welcome back. Welch IMDSA International Vice President > > Hi Kristy and everyone, > First of all I want to thank you for the warm welcome.I'm so sorry I didn't write all these years,but I moved to a new house which we constructed alone and I didn't have time to write and after we moved I didn't have internet above 2 years. I'm glad I'm back and I could contact you.Ciprian is born in march 06 2001 and at his birth the doctor told us he is MDS.Now he is 6 years old and he's going to a normal kindergarden where he feels good and he likes the company of other children.I'm usually verry occupied with work and with the 2 childs which I take them to kindergarden/school (Ciprian and Andrei).Ciprian is quite ok but he doesn't want to speak. > My E-Mail address is: adriana.nico@... or sandustr@... . > Warm regards to all, > > PS Sorry for my english. > > > > ________________________________________________________________________\ ____________ > Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. > http://get.games.yahoo.com/proddesc?gamekey=monopolyherenow > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Welcome back ! My name is and I'm the Newsletter Editor. Each paid member receives the online newsletter as part of our membership package. We have some wonderful opportunities throughout the newsletter to brag or share stories about our kids. If you're ever interested please email me at slpbjones@.... We would love to have Ciprian featured in our Shining Star and we always need brags for the Brag Book! Watch for reminders through the egroup! Newsletter Editor Mom to Aidan (mds) 5, a 3, 19 mos. adriana stroe wrote: Hi Kristy and everyone, First of all I want to thank you for the warm welcome.I'm so sorry I didn't write all these years,but I moved to a new house which we constructed alone and I didn't have time to write and after we moved I didn't have internet above 2 years. I'm glad I'm back and I could contact you.Ciprian is born in march 06 2001 and at his birth the doctor told us he is MDS.Now he is 6 years old and he's going to a normal kindergarden where he feels good and he likes the company of other children.I'm usually verry occupied with work and with the 2 childs which I take them to kindergarden/school (Ciprian and Andrei).Ciprian is quite ok but he doesn't want to speak. My E-Mail address is: adriana.nico@... or sandustr@... . Warm regards to all, PS Sorry for my english. __________________________________________________________ Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. http://get.games.yahoo.com/proddesc?gamekey=monopolyherenow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2007 Report Share Posted December 3, 2007 Welcome Fiona and family. Looking forward to hearing all about Hunter? Ask all of the questions you want. Someone here is sure to be able to help. Donna - gram to Adam 5 mds, Skylar 5 and Mia " Big 1 " Kristy Colvin wrote: Hi Fiona Feel free to ask any questions you have along the way! We all will be happy to share. Is Hunter getting any special therapy help with his muscle tone? Kristy Colvin IMDSA President Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 and Garrett 11 Fiona & Lee Price wrote: Hi everyone I'm new to the group. My beautiful little boy Hunter has been diagnosed with MDS. He is 7 weeks old tomorrow and is going great guns at the moment. This is all very new to my husband and I so I will probably have a million questions along the way for all you experts ;o). We live in Melbourne, Australia. Cheers Fiona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2007 Report Share Posted December 3, 2007 Hi Fiona I know that will know more about what is offered there than I do. But, I do think that it would help to do exercises with him even if his muscle tone seems good. The earlier you start therapy with him the better chance he has of not having delays. However, most counties like to wait till there is a delay before they start treating. Hunter may not have any trouble with muscle tone ever! But, since it is a possiblity, I just think it is better to start something with him instead of waiting for delays. Maybe you could ask your Physio for some suggestions on some safe exercises you could do at home with him? More than anything, it is important that you just enjoy Hunter right now! That first year passes so quickly that before you know it he will be running around the house getting into everything! So...enjoy this wonderful baby stage where you can snuggle up with him and love him without worrying what you " need " to do. Loving him and just caring for him like any other baby is the most important thing you can do! Kristy Fiona & Lee Price wrote: Hi Kristy Our Peds said that Hunter's muscle tone is good. So no we haven't been to see any further specialists at this time. Do you think we should get a Physio to check him out? We have him WL for Early Intervention but this wont become available till next year. Once he is accepted somewhere then they send a Physio out to check him over. The Peds was really happy with him at his 6 week check up and hasn't suggested we do anything further until the middle of next year when we visit the Peds again and get the Thyroid test done again. Fiona Mum to Hunter 7 weeks Re: Hi everyone Hi Fiona Feel free to ask any questions you have along the way! We all will be happy to share. Is Hunter getting any special therapy help with his muscle tone? Kristy Colvin IMDSA President Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 and Garrett 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2007 Report Share Posted December 4, 2007 Thanks Kristy I'll get him checked out at the Physio before xmas. Cheers Fiona ----- Original Message ----- From: Kristy Colvin Hi Fiona I know that will know more about what is offered there than I do. But, I do think that it would help to do exercises with him even if his muscle tone seems good. The earlier you start therapy with him the better chance he has of not having delays. However, most counties like to wait till there is a delay before they start treating. Hunter may not have any trouble with muscle tone ever! But, since it is a possiblity, I just think it is better to start something with him instead of waiting for delays. Maybe you could ask your Physio for some suggestions on some safe exercises you could do at home with him? More than anything, it is important that you just enjoy Hunter right now! That first year passes so quickly that before you know it he will be running around the house getting into everything! So...enjoy this wonderful baby stage where you can snuggle up with him and love him without worrying what you " need " to do. Loving him and just caring for him like any other baby is the most important thing you can do! Kristy Become a member of IMDSA today at http://www.imdsa.com ******************************************************* Purchase your MDS awareness bracelet today! http://www.imdsa.com/bracelets ************************************************************************** Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1-~1-888-MDS-LINK ********************************************************************* Share your story today! http://www.mosaicdownsyndrome.com ********************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2007 Report Share Posted December 4, 2007 Hi Fiona, My name is Gwyn and my son is 18 months old. He was diagnosed at 2 weeks old and it was a shock to us as well! He had/has very high muscle tone and has had very little delays up to this point. I started him in OT and ST immediately. They orininally told me that they really didn't need to be seeing Mark, but I insisted and am glad I did - it's been nothing but positive for him. We started with once/month at first then I moved to 2x/month and I just changed his therapy to seeing a develomental spec every week, the OT once/month and the ST once/month. I increased his visits b/c he's not walking yet and needs some focus on motor skills. With that said, I encourage you to take advantage of all of the services that you can get - it will only help you and your son! Mark's diagnosis was a huge shock to us to but I can't tell you how in love with my son we all are.........he is the most perfect, sweet, hilarious little boy in the world! I just can't belive he is 18 months old already! good luck to you and your family! gwyn > > Thanks Kristy > > I'll get him checked out at the Physio before xmas. > > Cheers > Fiona > > ----- Original Message ----- > From: Kristy Colvin > > Hi Fiona > I know that will know more about what is offered there than I do. > But, I do think that it would help to do exercises with him even if his > muscle tone seems good. The earlier you start therapy with him the better > chance he has of not having delays. However, most counties like to wait till > there is a delay before they start treating. > > Hunter may not have any trouble with muscle tone ever! But, since it is a > possiblity, I just think it is better to start something with him instead of > waiting for delays. Maybe you could ask your Physio for some suggestions on > some safe exercises you could do at home with him? > > More than anything, it is important that you just enjoy Hunter right now! > That first year passes so quickly that before you know it he will be running > around the house getting into everything! So...enjoy this wonderful baby > stage where you can snuggle up with him and love him without worrying what > you " need " to do. Loving him and just caring for him like any other baby is > the most important thing you can do! > > Kristy > > Become a member of IMDSA today at http://www.imdsa.com > ******************************************************* > Purchase your MDS awareness bracelet today! http://www.imdsa.com/bracelets > ************************************************************************** > Contact IMDSA Today at: > IMDSA~PO Box 1052~lin,TX~77856~USA~1-~1-888-MDS-LINK > ********************************************************************* > Share your story today! http://www.mosaicdownsyndrome.com > ********************************************************* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2007 Report Share Posted December 4, 2007 Hi Gwyn Thanks for the info. I'll try and get Hunter into a Physio before xmas. We are very fortunate that we have 2 very close friends who are OT's and ST's. So I'm sure they will be right on top of it throughout Hunter's life to make sure he is getting the best possible help. Can I ask you, did your Paeds mention that you and your partner had to get tested to see if you carried the extra C. My Paeds mentioned this on the day they diagnosed Hunter however that day was a bit of a blur and he hasn't mentioned it since. I wasn't sure if it was something that needed to be done for MDS or just Translocation? We weren't happy with our Peads so we have been reffered to someone else which we will see in 2 weeks so I will ask her as well. Just thought I'd check. Cheers Fiona Mum to Hunter 7 weeks From: Gwyn Theodore Sent: Wednesday, December 05, 2007 5:27 AM Hi Fiona, My name is Gwyn and my son is 18 months old. He was diagnosed at 2 weeks old and it was a shock to us as well! He had/has very high muscle tone and has had very little delays up to this point. I started him in OT and ST immediately. They orininally told me that they really didn't need to be seeing Mark, but I insisted and am glad I did - it's been nothing but positive for him. We started with once/month at first then I moved to 2x/month and I just changed his therapy to seeing a develomental spec every week, the OT once/month and the ST once/month. I increased his visits b/c he's not walking yet and needs some focus on motor skills. With that said, I encourage you to take advantage of all of the services that you can get - it will only help you and your son! Mark's diagnosis was a huge shock to us to but I can't tell you how in love with my son we all are.........he is the most perfect, sweet, hilarious little boy in the world! I just can't belive he is 18 months old already! good luck to you and your family! gwyn > > Thanks Kristy > > I'll get him checked out at the Physio before xmas. > > Cheers > Fiona > > ----- Original Message ----- > From: Kristy Colvin > > Hi Fiona > I know that will know more about what is offered there than I do. > But, I do think that it would help to do exercises with him even if his > muscle tone seems good. The earlier you start therapy with him the better > chance he has of not having delays. However, most counties like to wait till > there is a delay before they start treating. > > Hunter may not have any trouble with muscle tone ever! But, since it is a > possiblity, I just think it is better to start something with him instead of > waiting for delays. Maybe you could ask your Physio for some suggestions on > some safe exercises you could do at home with him? > > More than anything, it is important that you just enjoy Hunter right now! > That first year passes so quickly that before you know it he will be running > around the house getting into everything! So...enjoy this wonderful baby > stage where you can snuggle up with him and love him without worrying what > you " need " to do. Loving him and just caring for him like any other baby is > the most important thing you can do! > > Kristy > > Become a member of IMDSA today at http://www.imdsa.com > ******************************************************* > Purchase your MDS awareness bracelet today! http://www.imdsa.com/bracelets > ************************************************************************** > Contact IMDSA Today at: > IMDSA~PO Box 1052~lin,TX~77856~USA~1-~1-888-MDS-LINK > ********************************************************************* > Share your story today! http://www.mosaicdownsyndrome.com > ********************************************************* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2007 Report Share Posted December 6, 2007 Yes it is all so confusing and I don't know why they choose to tell us so much stuff in that initial period when are heads are swimming already. I believe my Paeds should have gone over everything again at Hunter's 6 week check up that he had told us at the hospital. But it took me to ask him to explain things again for him to repeat anything. And of course I forgot about the below. My husband and I are in our late 20's and are planning on having more children (eventually) so I'll need to get this clarified. Will let you know how I get on. Fiona Sent: Wednesday, December 05, 2007 11:55 PM >I have to tell you that our doctor suggest that my husband and I could also >be tested. We were also told mds and not translocation. Why they said we >could be tested I do not know. It was all such a blur and a shock I can >not remember. I do know that for some reason they were able to tell us >that Isabella did not get the XXX from me and that it came from my husband. >They said I had some kind of test, when or what or where I do not know. >But for sure the XXX came from my husband. Now I have so many questions. >We had the choice of going to the DS clinic twice a year for Isabella or >back to the genetic specialist. We opted to see the DS clinic once a year >and the genetic doctor once a year since Isabella has two things going on. >We are not due to see the genetic doctor until next year, I will ask at >that time since my mind is working better these days, why they said we >could be tested. It does not matter to me how this happened because of my >age we are not planning on havin > g any more children, Isabella is our one and only precious baby. > Sue > > -------------- Original message -------------- > > Hi Kristy > > No Hunter definitely has MDS not MTDS as I have a copy of his blood test. > This is why I thought it was weird the doctor mentioned this at the > hospital. It wasn't until I was back at home and reading up about the > different types of DS that I realised Translocation is the one that can be > carried from a parent. > > I'm seeing a new Paeds in a couple of weeks (she has all the reports) and > I'll double check with her that it's not MTDS. > > From: Kristy Colvin > Sent: Wednesday, December 05, 2007 11:59 AM > > Fiona > If the doctor mentioned something about you being tested for the extra > chromosome, then I would say that Hunter has mosaic translocation Down > syndrome??? Is that what the doctor told you? (If you can remember) I know > it all seems a blur when you are first told because they often give you > too much information to absorb at once. Mosaic translocation Down syndrome > (MTDS) is rare, but we do have members whose children have it. This type > of MDS means that a part of the chromosome attached to another chromosome. > There aren't any different developmental or health issues compared to MDS. > It is just another form. It can be passed from the parents if the parents > are carrying that gene, but sometimes kids are born with it and neither > parent has the gene. So, sometimes it isn't hereditary. The reason the > doctor would like to have you tested (if this is the case and he has MTDS) > is to just be sure that you are not carrying the gene and if you are, then > they can tell you what that > means for future children. > > Kristy > > Fiona & Lee Price wrote: > Hi Gwyn > > Thanks for the info. I'll try and get Hunter into a Physio before xmas. We > are very fortunate that we have 2 very close friends who are OT's and > ST's. So I'm sure they will be right on top of it throughout Hunter's life > to make sure he is getting the best possible help. > > Can I ask you, did your Paeds mention that you and your partner had to get > tested to see if you carried the extra C. My Paeds mentioned this on the > day they diagnosed Hunter however that day was a bit of a blur and he > hasn't mentioned it since. I wasn't sure if it was something that needed > to be done for MDS or just Translocation? > > We weren't happy with our Peads so we have been reffered to someone else > which we will see in 2 weeks so I will ask her as well. Just thought I'd > check. > > Cheers > Fiona > Mum to Hunter 7 weeks > > From: Gwyn Theodore > Sent: Wednesday, December 05, 2007 5:27 AM > > Hi Fiona, > My name is Gwyn and my son is 18 months old. He was diagnosed at 2 weeks > old > and it was a shock to us as well! He had/has very high muscle tone and has > had very little delays up to this point. I started him in OT and ST > immediately. They orininally told me that they really didn't need to be > seeing Mark, but I insisted and am glad I did - it's been nothing but > positive for him. We started with once/month at first then I moved to > 2x/month and I just changed his therapy to seeing a develomental spec > every > week, the OT once/month and the ST once/month. I increased his visits b/c > he's not walking yet and needs some focus on motor skills. > > With that said, I encourage you to take advantage of all of the services > that you can get - it will only help you and your son! > > Mark's diagnosis was a huge shock to us to but I can't tell you how in > love > with my son we all are.........he is the most perfect, sweet, hilarious > little boy in the world! I just can't belive he is 18 months old already! > > good luck to you and your family! > gwyn > > >> >> Thanks Kristy >> >> I'll get him checked out at the Physio before xmas. >> >> Cheers >> Fiona >> >> ----- Original Message ----- >> From: Kristy Colvin >> >> Hi Fiona >> I know that will know more about what is offered there than I do. >> But, I do think that it would help to do exercises with him even if his >> muscle tone seems good. The earlier you start therapy with him the better >> chance he has of not having delays. However, most counties like to wait >> till >> there is a delay before they start treating. >> >> Hunter may not have any trouble with muscle tone ever! But, since it is a >> possiblity, I just think it is better to start something with him instead >> of >> waiting for delays. Maybe you could ask your Physio for some suggestions >> on >> some safe exercises you could do at home with him? >> >> More than anything, it is important that you just enjoy Hunter right now! >> That first year passes so quickly that before you know it he will be >> running >> around the house getting into everything! So...enjoy this wonderful baby >> stage where you can snuggle up with him and love him without worrying >> what >> you " need " to do. Loving him and just caring for him like any other baby >> is >> the most important thing you can do! >> >> Kristy >> >> Become a member of IMDSA today at http://www.imdsa.com >> ******************************************************* >> Purchase your MDS awareness bracelet today! >> http://www.imdsa.com/bracelets >> ************************************************************************** >> Contact IMDSA Today at: >> IMDSA~PO Box 1052~lin,TX~77856~USA~1-~1-888-MDS-LINK >> ********************************************************************* >> Share your story today! http://www.mosaicdownsyndrome.com >> ********************************************************* >> Quote Link to comment Share on other sites More sharing options...
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