Guest guest Posted June 26, 2002 Report Share Posted June 26, 2002 HIYA ISH I am glad to hear your son is doing well...I Would find out if he is or isnt, purely for your own interest and for his if anything should crop up later in his development you can jump on it quick. This group is full of the most wonderful deicated people and if your son is Moziac it can help all of us to see how broad the spectrum is. My daughter is 5 and wasnt diagnosed until 4. she hit alot of the 'normal' developmental milestones but is laggin in quite a few others..but she is physically spot on!!! And doing well. there is not much study out there of Moziac so it is surprising your doctor has thought of it to be honest...then you guys in the States seem to be way ahead in taht than over here. (australia). Great to hear from you and I will creep back into llurk mode myself now :=) God bless you all peace Nat >From: "lsh92129" >Reply-To: MosaicDS >To: MosaicDS >Subject: Hi! We're new! >Date: Tue, 25 Jun 2002 23:34:09 -0000 > >Hi everyone. I've been lurking for a little while. I have an 18 >month old little boy, Jakey. His doctor suspects he is Mosaic and >has suggested doing a more thorough blood test. Jake is doing >amazingly well. He is NEVER sick (not even a cold; even my 16 year >old gets sick more!) and is developmentally on target. He does have >low muscle tone and some nystagmus but that's about it, thank God. I >guess I'm wondering why it really matters. In other words, some kids >are Mosaic and not doing well and some aren't and are doing well. I >think people think Mosaicism means they are automatically doing >better. > >So I feel like Jake is doing really well. If the tests say he is not >Mosaic, that doesn't change the fact that he's doing well. If he was >not doing well, a thousand tests could say he's Mosaic and it >wouldn't change the fact that he wasn't doing well. > >I guess my question is: would you agree to further testing? I would >be really interested in other's experiences/opinions. > >Thanks for having me, BTW. You sound like a really neat group! > > > Join the world’s largest e-mail service with MSN Hotmail. Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2002 Report Share Posted June 26, 2002 , Welcome to our group! You are right on saying that the tests will not change the way you feel about your son. But, it is important to know your child's diagnosis for several reasons. First of all, you could receive physical, occupational, and speech therapy. These would greatly benefit Jakey. You mentioned that he did have low muscle tone, with proper therapy, this could be corrected. Also, a large percentage of children with MDS have speech impairments. With early intervention, this can also be corrected. Secondly, there are many health issues to be concerned about when it comes to having a child with MDS. Although you child is healthy now, it is important to have at least yearly check ups on the thyroid and periodic check ups on the heart. Also, for just a peace of mind, I would recommend the test. It is always important to know what lies ahead for your child and I know from personal experience that it is hard going through life wondering if there is something " wrong " and not actually having that diagnosis. Let us know where you live, and if you have any questions please do not hesitate to ask. Kristy Colvin President IMDSA Mom to: Arron 20, 17, Tim 16 (MDS), Stevan 15, Garrett 6 Grandmom to: Arron Jr. 3, Avaryn 21months (CMV), Aidan 1month (tracheol malaysia)(sp?) --- lsh92129 wrote: > Hi everyone. I've been lurking for a little while. > I have an 18 > month old little boy, Jakey. His doctor suspects he > is Mosaic and > has suggested doing a more thorough blood test. > Jake is doing > amazingly well. He is NEVER sick (not even a cold; > even my 16 year > old gets sick more!) and is developmentally on > target. He does have > low muscle tone and some nystagmus but that's about > it, thank God. I > guess I'm wondering why it really matters. In other > words, some kids > are Mosaic and not doing well and some aren't and > are doing well. I > think people think Mosaicism means they are > automatically doing > better. > > So I feel like Jake is doing really well. If the > tests say he is not > Mosaic, that doesn't change the fact that he's doing > well. If he was > not doing well, a thousand tests could say he's > Mosaic and it > wouldn't change the fact that he wasn't doing well. > > > I guess my question is: would you agree to further > testing? I would > be really interested in other's > experiences/opinions. > > Thanks for having me, BTW. You sound like a really > neat group! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2002 Report Share Posted June 26, 2002 Thanks, ladies. I think I wasn't clear and I am sorry. Jake does have Ds - we already know that. He has gotten early intervention from the time he was a few weeks old. Currently, he gets P.T., O.T., S.T., and a teacher who comes to the house. We do get the usual tests and exams. That's how I know about the nystagmus - I took him to the ophthalmologist at 4 months. Thyroid has been fine. Ears and hearing have been fine - he's never even had an ear infection. What the doc. and geneticist told me was that in the hospital, they only tested 15 cells so that it would be good to test more cells. I totally understand that the issue isn't " IF " he's Mosaic, as much as " WHERE " he is Mosaic. I've met a couple of other families whose kids are Mosaic but they have had heart problems, eye problems, etc. Conversely, Jake has had none of those, praise be to God. Thanks everyone - I really appreciate hearing people's comments....-- - In MosaicDS@y..., kristy colvin <imdsapresident@i...> wrote: > , > Welcome to our group! You are right on saying that the > tests will not change the way you feel about your son. > But, it is important to know your child's diagnosis > for several reasons. First of all, you could receive > physical, occupational, and speech therapy. These > would greatly benefit Jakey. You mentioned that he did > have low muscle tone, with proper therapy, this could > be corrected. Also, a large percentage of children > with MDS have speech impairments. With early > intervention, this can also be corrected. Secondly, > there are many health issues to be concerned about > when it comes to having a child with MDS. Although you > child is healthy now, it is important to have at least > yearly check ups on the thyroid and periodic check ups > on the heart. Also, for just a peace of mind, I would > recommend the test. It is always important to know > what lies ahead for your child and I know from > personal experience that it is hard going through life > wondering if there is something " wrong " and not > actually having that diagnosis. > Let us know where you live, and if you have any > questions please do not hesitate to ask. > Kristy Colvin > President IMDSA > Mom to: Arron 20, 17, Tim 16 (MDS), Stevan 15, > Garrett 6 > Grandmom to: Arron Jr. 3, Avaryn 21months (CMV), Aidan > 1month (tracheol malaysia)(sp?) > --- lsh92129 <laura-house@m...> wrote: > > Hi everyone. I've been lurking for a little while. > > I have an 18 > > month old little boy, Jakey. His doctor suspects he > > is Mosaic and > > has suggested doing a more thorough blood test. > > Jake is doing > > amazingly well. He is NEVER sick (not even a cold; > > even my 16 year > > old gets sick more!) and is developmentally on > > target. He does have > > low muscle tone and some nystagmus but that's about > > it, thank God. I > > guess I'm wondering why it really matters. In other > > words, some kids > > are Mosaic and not doing well and some aren't and > > are doing well. I > > think people think Mosaicism means they are > > automatically doing > > better. > > > > So I feel like Jake is doing really well. If the > > tests say he is not > > Mosaic, that doesn't change the fact that he's doing > > well. If he was > > not doing well, a thousand tests could say he's > > Mosaic and it > > wouldn't change the fact that he wasn't doing well. > > > > > > I guess my question is: would you agree to further > > testing? I would > > be really interested in other's > > experiences/opinions. > > > > Thanks for having me, BTW. You sound like a really > > neat group! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2002 Report Share Posted June 26, 2002 Dear , Greetings! I have a son who is the same age as Jakey! Our Jonas was born 11/01/00. He is doing very well too, and we could not be happier with his progress. He has been walking for over a month, but still chooses to crawl more than walk because he can do it faster right now. He is such a bright light in our home that when he was sick recently with a very sore throat, I felt like all the lights had dimmed around here. We live in Western Pennsylvania, USA and take advantage of the Early Intervention program which has been a tremendous help to us. We have an older son who is 7. He is such a great big brother to Jonas, and the one person who can make Jonas laugh his head off. (I Love That!) It is so hard to address the issue of mosaic vs full Down's Syndrome and not sound like I don't think there is any difference between the two. Largely, this is because of the way the whole thing was presented to my husband and I by the physicians. We found out Jonas had DS because of the discovery of two holes in his heart while he was in the NICU (See personal stories MARTZ at www.mosaicdownsyndrome.com) for his first 22 days of life. We could not understand why it had taken 10 days for the doctors to figure out he had DS. We also did not understand why Jonas had no physical features that we could notice. It was 3 days later when we found out he had Mosaic Down's Syndrome with 30% effected cells. The physicians told us that because of this, we could expect Jonas to have fewer characteristics than a child who has 100% effected cells, though they could not tell us what areas of Jonas' development would be most effected. This of course is something we will find out with time. They did get us in touch with Early Intervention etc. right away, and told us to work hard with him and expect the very best from him. That is just what we do. I have a relative who has a daughter with full Down's Syndrome. When I speak to her about mothering a child with DS, we do not relate very well. It is like we are not talking about the same thing at all. I guess that is part of the difference for me. I know my son could be worse off than some children with DS effecting all their cells, I am aware that there are no guarantees with MDS over DS, but I can tell you that I relate very well with the parents in this MDS group, and I have had greater difficulty relating to parents of children with full DS. I am a "need to know" kind of person, so I would find out what Jakey has for sure if he were my son. My opinion only! You just know when you have a "good fit" and connecting with this MDS group was the perfect fit for me. Reading books about DS, and meeting with parent groups where many of the children were severely mentally handicapped was very depressing to me, and something that was dragging me down heavily. I read on here about how well these children are doing for the most part, and I am encouraged. I need positive thoughts in my life and in my parenting. I have found them here. Best wishes in whatever you decide about the testing. These are only my own thoughts, and please be clear that I DO NOT think that my son is "better" than any other child, just different. God has blessed us so much with Jonas and , and we are so thankful! I look forward to learning more about your family! God Bless Your Family! Barb Martz Mom to Jonas 1 1/2 years old & 7 Hi! We're new! Hi everyone. I've been lurking for a little while. I have an 18month old little boy, Jakey. His doctor suspects he is Mosaic andhas suggested doing a more thorough blood test. Jake is doingamazingly well. He is NEVER sick (not even a cold; even my 16 yearold gets sick more!) and is developmentally on target. He does havelow muscle tone and some nystagmus but that's about it, thank God. Iguess I'm wondering why it really matters. In other words, some kidsare Mosaic and not doing well and some aren't and are doing well. Ithink people think Mosaicism means they are automatically doingbetter.So I feel like Jake is doing really well. If the tests say he is notMosaic, that doesn't change the fact that he's doing well. If he wasnot doing well, a thousand tests could say he's Mosaic and itwouldn't change the fact that he wasn't doing well.I guess my question is: would you agree to further testing? I wouldbe really interested in other's experiences/opinions.Thanks for having me, BTW. You sound like a really neat group! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2002 Report Share Posted June 27, 2002 -Wow Barb - very well put. I have found that in some other groups, NOT here, having your baby be Mosaic is worn like a badge of superiority, which makes no sense, of course. I've had people " congratulate " me on his possibly being Mosaic when they should be congratulating me that he's doing well! They don't seem to realize that the important thing is which cells are affected. Some peopel are just ignorant and don't realize that many non-Mosaic babies with Ds do better than many Mosaic babies. So, I feel like I'm in a twilight zone. I belong to several other boards and SO MANY of those kids have had heart problems, breathing problems, limb problems, etc. that sometimes I actually feel a bit guilty! I often don't post about things Jake does. Our regional worker told me she thinks Jake may not be retarded at all - THAT is something I haven't shared....but when I read people's stories here, most of the kids are doing well and it makes it exciting to post accomplishments. So, I guess I'll allow the blood testing at the same time as his routine thyroid test but regardless of the results, he is doing great and I feel so blessed.- Jonah sounds like he's doing great! You must be sooo proud of him! I'm gonna check the photo section to see if he's there. If not, Please post a picture for me or e-mail it to me! Thanks so much for responding and welcoming me......... - In MosaicDS@y..., " Martz " <jonas359@m...> wrote: > Dear , > Greetings! I have a son who is the same age as Jakey! Our Jonas was born 11/01/00. He is doing very well too, and we could not be happier with his progress. He has been walking for over a month, but still chooses to crawl more than walk because he can do it faster right now. He is such a bright light in our home that when he was sick recently with a very sore throat, I felt like all the lights had dimmed around here. We live in Western Pennsylvania, USA and take advantage of the Early Intervention program which has been a tremendous help to us. We have an older son who is 7. He is such a great big brother to Jonas, and the one person who can make Jonas laugh his head off. (I Love That!) It is so hard to address the issue of mosaic vs full Down's Syndrome and not sound like I don't think there is any difference between the two. Largely, this is because of the way the whole thing was presented to my husband and I by the physicians. We found out Jonas had DS because of the discovery of two holes in his heart while he was in the NICU (See personal stories MARTZ at www.mosaicdownsyndrome.com) for his first 22 days of life. We could not understand why it had taken 10 days for the doctors to figure out he had DS. We also did not understand why Jonas had no physical features that we could notice. It was 3 days later when we found out he had Mosaic Down's Syndrome with 30% effected cells. The physicians told us that because of this, we could expect Jonas to have fewer characteristics than a child who has 100% effected cells, though they could not tell us what areas of Jonas' development would be most effected. This of course is something we will find out with time. They did get us in touch with Early Intervention etc. right away, and told us to work hard with him and expect the very best from him. That is just what we do. I have a relative who has a daughter with full Down's Syndrome. When I speak to her about mothering a child with DS, we do not relate very well. It is like we are not talking about the same thing at all. I guess that is part of the difference for me. I know my son could be worse off than some children with DS effecting all their cells, I am aware that there are no guarantees with MDS over DS, but I can tell you that I relate very well with the parents in this MDS group, and I have had greater difficulty relating to parents of children with full DS. I am a " need to know " kind of person, so I would find out what Jakey has for sure if he were my son. My opinion only! You just know when you have a " good fit " and connecting with this MDS group was the perfect fit for me. Reading books about DS, and meeting with parent groups where many of the children were severely mentally handicapped was very depressing to me, and something that was dragging me down heavily. I read on here about how well these children are doing for the most part, and I am encouraged. I need positive thoughts in my life and in my parenting. I have found them here. Best wishes in whatever you decide about the testing. These are only my own thoughts, and please be clear that I DO NOT think that my son is " better " than any other child, just different. God has blessed us so much with Jonas and , and we are so thankful! I look forward to learning more about your family! > > God Bless Your Family! > Barb Martz > Mom to Jonas 1 1/2 years old & 7 > > Hi! We're new! > > Hi everyone. I've been lurking for a little while. I have an 18 > month old little boy, Jakey. His doctor suspects he is Mosaic and > has suggested doing a more thorough blood test. Jake is doing > amazingly well. He is NEVER sick (not even a cold; even my 16 year > old gets sick more!) and is developmentally on target. He does have > low muscle tone and some nystagmus but that's about it, thank God. I > guess I'm wondering why it really matters. In other words, some kids > are Mosaic and not doing well and some aren't and are doing well. I > think people think Mosaicism means they are automatically doing > better. > > So I feel like Jake is doing really well. If the tests say he is not > Mosaic, that doesn't change the fact that he's doing well. If he was > not doing well, a thousand tests could say he's Mosaic and it > wouldn't change the fact that he wasn't doing well. > > I guess my question is: would you agree to further testing? I would > be really interested in other's experiences/opinions. > > Thanks for having me, BTW. You sound like a really neat group! > > > > > > Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com > ************************************************* > MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus > ************************************************* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2002 Report Share Posted June 27, 2002 > > Dear , > > Greetings! I have a son who is the same age as Jakey! Our > Jonas was born 11/01/00. He is doing very well too, and we could not > be happier with his progress. He has been walking for over a month, > but still chooses to crawl more than walk because he can do it faster > right now. He is such a bright light in our home that when he was > sick recently with a very sore throat, I felt like all the lights had > dimmed around here. We live in Western Pennsylvania, USA and take > advantage of the Early Intervention program which has been a > tremendous help to us. We have an older son who is 7. He is > such a great big brother to Jonas, and the one person who can make > Jonas laugh his head off. (I Love That!) It is so hard to address > the issue of mosaic vs full Down's Syndrome and not sound like I > don't think there is any difference between the two. Largely, this > is because of the way the whole thing was presented to my husband and > I by the physicians. We found out Jonas had DS because of the > discovery of two holes in his heart while he was in the NICU (See > personal stories MARTZ at www.mosaicdownsyndrome.com) for his first > 22 days of life. We could not understand why it had taken 10 days > for the doctors to figure out he had DS. We also did not understand > why Jonas had no physical features that we could notice. It was 3 > days later when we found out he had Mosaic Down's Syndrome with 30% > effected cells. The physicians told us that because of this, we > could expect Jonas to have fewer characteristics than a child who has > 100% effected cells, though they could not tell us what areas of > Jonas' development would be most effected. This of course is > something we will find out with time. They did get us in touch with > Early Intervention etc. right away, and told us to work hard with him > and expect the very best from him. That is just what we do. I have > a relative who has a daughter with full Down's Syndrome. When I > speak to her about mothering a child with DS, we do not relate very > well. It is like we are not talking about the same thing at all. I > guess that is part of the difference for me. I know my son could be > worse off than some children with DS effecting all their cells, I am > aware that there are no guarantees with MDS over DS, but I can tell > you that I relate very well with the parents in this MDS group, and I > have had greater difficulty relating to parents of children with full > DS. I am a " need to know " kind of person, so I would find out what > Jakey has for sure if he were my son. My opinion only! You just > know when you have a " good fit " and connecting with this MDS group > was the perfect fit for me. Reading books about DS, and meeting with > parent groups where many of the children were severely mentally > handicapped was very depressing to me, and something that was > dragging me down heavily. I read on here about how well these > children are doing for the most part, and I am encouraged. I need > positive thoughts in my life and in my parenting. I have found them > here. Best wishes in whatever you decide about the testing. These > are only my own thoughts, and please be clear that I DO NOT think > that my son is " better " than any other child, just different. God > has blessed us so much with Jonas and , and we are so > thankful! I look forward to learning more about your family! > > > > God Bless Your > Family! > > Barb Martz > > Mom to Jonas 1 1/2 > years old & 7 > > > > Hi! We're new! > > > > Hi everyone. I've been lurking for a little while. I have an 18 > > month old little boy, Jakey. His doctor suspects he is Mosaic and > > has suggested doing a more thorough blood test. Jake is doing > > amazingly well. He is NEVER sick (not even a cold; even my 16 year > > old gets sick more!) and is developmentally on target. He does have > > low muscle tone and some nystagmus but that's about it, thank God. > I > > guess I'm wondering why it really matters. In other words, some > kids > > are Mosaic and not doing well and some aren't and are doing well. I > > think people think Mosaicism means they are automatically doing > > better. > > > > So I feel like Jake is doing really well. If the tests say he is > not > > Mosaic, that doesn't change the fact that he's doing well. If he > was > > not doing well, a thousand tests could say he's Mosaic and it > > wouldn't change the fact that he wasn't doing well. > > > > I guess my question is: would you agree to further testing? I would > > be really interested in other's experiences/opinions. > > > > Thanks for having me, BTW. You sound like a really neat group! > > > > > > > > > > > > Won't you please consider adding your personal story on the MDS > website today? http://www.mosaicdownsyndrome.com > > ************************************************* > > MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus > > ************************************************* > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2002 Report Share Posted June 27, 2002 Dear , Please feel free to brag your head off at this site, we thrive on the accomplishments both great and small of all "our dear ones!" Glad to meet you! E-mail me on or off group any time at all. What is Jake doing now? I am curious because he and Jonas are so close in age. Let me hear from you when you have a chance. Jonas' first birthday photo is at the photo island site. If you don't know how to access it, let me know. His story, TOTAL MIRACLE, is pretty remarkable too on the site I mentioned before, read it if you have a chance. One of the holes in Jonas' heart has closed on it's own despite the cardiologist telling us it was "physically impossible". We are watching the other hole and seeing the cardiologist regularly, and praying, praying, praying... Kisses to Jake, Barb Martz jonas359@... Mom to Jonas 1 1/2 (MDS) and 7 Hi! We're new!>> Hi everyone. I've been lurking for a little while. I have an 18> month old little boy, Jakey. His doctor suspects he is Mosaic and> has suggested doing a more thorough blood test. Jake is doing> amazingly well. He is NEVER sick (not even a cold; even my 16 year> old gets sick more!) and is developmentally on target. He does have> low muscle tone and some nystagmus but that's about it, thank God.I> guess I'm wondering why it really matters. In other words, somekids> are Mosaic and not doing well and some aren't and are doing well. I> think people think Mosaicism means they are automatically doing> better.>> So I feel like Jake is doing really well. If the tests say he isnot> Mosaic, that doesn't change the fact that he's doing well. If hewas> not doing well, a thousand tests could say he's Mosaic and it> wouldn't change the fact that he wasn't doing well.>> I guess my question is: would you agree to further testing? I would> be really interested in other's experiences/opinions.>> Thanks for having me, BTW. You sound like a really neat group!>> >>>> Won't you please consider adding your personal story on the MDSwebsite today? http://www.mosaicdownsyndrome.com> *************************************************> MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus> *************************************************> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2002 Report Share Posted June 27, 2002 I will pray that Jonas' other hole closes on it's own, too. That really is a miracle, isn't it? He sounds like he is doing amazingly well, praise be to God. I was induced 3 weeks early due to my blood pressure. Jake had pulmonary hypertension due to a PDA. He was in NICU for 2 weeks - despite their thinking he might need surgery, his PDA closed on it's own and at 6 months, we had our last echo, just to be on the safe side. Jake has just starting taking steps on his own. He has been cruising for several months now. I thought he'd NEVER let go of the couch. jake crawled at about 7 months and could hold his own bottle and cup at 7 months. On the down side, he didn't sit independently until his 1st birthday - at his actual b-day party! I was getting really concerned.... Jake babbles and can say " Adam " , his big brother, well enough to understand it, but that's the only word anyone else could understand, if you know what I mean. He is a very active and happy toddler; very aware of things. Obviously, if I compare him to his 16 year old brother, he is not as advanced but he is doing very well and I am so proud of him. Isn't if funny how every little accomplishment means so much more? We are working with eating solids - Jake only has 4 teeth; 2 upper front and 2 upper molars, so that, coupled with low muscle tone, makes him chew and chew and then spit out most of the food. He doesn't care for the soft baby food too much (can't say I blame him!). I am also trying to get him off his bottle but that is not too easy! My 16 year old was off completely the day after he turned 1, but Jake is more stubborn! The only big issues with him right now are his pincer grasp and his eyes. He has mild nystagmus, which may require surgery. However, I have been praying like crazy and at the last visit it had gotten better, so maybe.........the idea of his eyes being cut into is almost more than I can bear to think about. Thanks for your interest - please tell me more about Jonas and your family - I'm going to go look at your pix now. Did you see Jake's? I posted some here..... thanks for being so welcoming! > > Dear , > > Greetings! I have a son who is the same age as Jakey! Our > Jonas was born 11/01/00. He is doing very well too, and we could not > be happier with his progress. He has been walking for over a month, > but still chooses to crawl more than walk because he can do it faster > right now. He is such a bright light in our home that when he was > sick recently with a very sore throat, I felt like all the lights had > dimmed around here. We live in Western Pennsylvania, USA and take > advantage of the Early Intervention program which has been a > tremendous help to us. We have an older son who is 7. He is > such a great big brother to Jonas, and the one person who can make > Jonas laugh his head off. (I Love That!) It is so hard to address > the issue of mosaic vs full Down's Syndrome and not sound like I > don't think there is any difference between the two. Largely, this > is because of the way the whole thing was presented to my husband and > I by the physicians. We found out Jonas had DS because of the > discovery of two holes in his heart while he was in the NICU (See > personal stories MARTZ at www.mosaicdownsyndrome.com) for his first > 22 days of life. We could not understand why it had taken 10 days > for the doctors to figure out he had DS. We also did not understand > why Jonas had no physical features that we could notice. It was 3 > days later when we found out he had Mosaic Down's Syndrome with 30% > effected cells. The physicians told us that because of this, we > could expect Jonas to have fewer characteristics than a child who has > 100% effected cells, though they could not tell us what areas of > Jonas' development would be most effected. This of course is > something we will find out with time. They did get us in touch with > Early Intervention etc. right away, and told us to work hard with him > and expect the very best from him. That is just what we do. I have > a relative who has a daughter with full Down's Syndrome. When I > speak to her about mothering a child with DS, we do not relate very > well. It is like we are not talking about the same thing at all. I > guess that is part of the difference for me. I know my son could be > worse off than some children with DS effecting all their cells, I am > aware that there are no guarantees with MDS over DS, but I can tell > you that I relate very well with the parents in this MDS group, and I > have had greater difficulty relating to parents of children with full > DS. I am a " need to know " kind of person, so I would find out what > Jakey has for sure if he were my son. My opinion only! You just > know when you have a " good fit " and connecting with this MDS group > was the perfect fit for me. Reading books about DS, and meeting with > parent groups where many of the children were severely mentally > handicapped was very depressing to me, and something that was > dragging me down heavily. I read on here about how well these > children are doing for the most part, and I am encouraged. I need > positive thoughts in my life and in my parenting. I have found them > here. Best wishes in whatever you decide about the testing. These > are only my own thoughts, and please be clear that I DO NOT think > that my son is " better " than any other child, just different. God > has blessed us so much with Jonas and , and we are so > thankful! I look forward to learning more about your family! > > > > God Bless Your > Family! > > Barb Martz > > Mom to Jonas 1 1/2 > years old & 7 > > > > Hi! We're new! > > > > Hi everyone. I've been lurking for a little while. I have an 18 > > month old little boy, Jakey. His doctor suspects he is Mosaic and > > has suggested doing a more thorough blood test. Jake is doing > > amazingly well. He is NEVER sick (not even a cold; even my 16 year > > old gets sick more!) and is developmentally on target. He does have > > low muscle tone and some nystagmus but that's about it, thank God. > I > > guess I'm wondering why it really matters. In other words, some > kids > > are Mosaic and not doing well and some aren't and are doing well. I > > think people think Mosaicism means they are automatically doing > > better. > > > > So I feel like Jake is doing really well. If the tests say he is > not > > Mosaic, that doesn't change the fact that he's doing well. If he > was > > not doing well, a thousand tests could say he's Mosaic and it > > wouldn't change the fact that he wasn't doing well. > > > > I guess my question is: would you agree to further testing? I would > > be really interested in other's experiences/opinions. > > > > Thanks for having me, BTW. You sound like a really neat group! > > > > > > > > > > > > Won't you please consider adding your personal story on the MDS > website today? http://www.mosaicdownsyndrome.com > > ************************************************* > > MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus > > ************************************************* > > Quote Link to comment Share on other sites More sharing options...
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