Martha,
I'm sorry to hear of your granddaughter's hospitalization. I surely hope things have continued to improve for her. I'm sending good thoughts your way.
Julie
new granddaughter
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
My granddaughter Abigail came home from the hospital today, after 11 days in NICU. She has been diagnosed with Down Syndrome, so the chold family has lots of challenges ahead, and a steep learning curve.
We are thankful that she is keeping her oxygen levels up (they removed the oxygen tube on Friday) and that her heart, brain, and hearing scans all came back okay. So the immediate crisis is over. As for the rest, we'll take it as it comes. Kenny and Michelle have lots to process, and things to get in place to give Abigail as good a start as possible.
Thanks for all your good wishes.
Love,
Martha
We are thankful that she is keeping her oxygen levels up (they removed the oxygen tube on Friday) and that her heart, brain, and hearing scans all came back okay. So the immediate crisis is over. As for the rest, we'll take it as it comes. Kenny and Michelle have lots to process, and things to get in place to give Abigail as good a start as possible.
Thanks for all your good wishes.
Love,
Martha
Martha
Martha,
I've been wondering how Abigail has been doing. That's quite an unexpected diagnosis. I thought Down's Syndrome babies were identifiable at birth. There is so much more hope for these children than there was years ago, but it is still an adjustment to learn that your child will not live a normal life. I will continue to pray for your family.
Gloria
I've been wondering how Abigail has been doing. That's quite an unexpected diagnosis. I thought Down's Syndrome babies were identifiable at birth. There is so much more hope for these children than there was years ago, but it is still an adjustment to learn that your child will not live a normal life. I will continue to pray for your family.
Gloria
You never know what you can do until you have to do it.
Martha,
I too was thinking about you and wondering how things were going with baby Abigail. I'm glad you all at least have a definitive diagnosis and aren't left in limbo. There's nothing easy about a life altering diagnosis so soon after birth, but at least little Abigail will have the advantage of being identified early. She'll have all the special interventions and medical support right from the get go, which will be so important in her development.
And of course she already has the most important part to a bright future; a loving family.
I continue to send you and your family good thoughts.
Julie
I too was thinking about you and wondering how things were going with baby Abigail. I'm glad you all at least have a definitive diagnosis and aren't left in limbo. There's nothing easy about a life altering diagnosis so soon after birth, but at least little Abigail will have the advantage of being identified early. She'll have all the special interventions and medical support right from the get go, which will be so important in her development.
And of course she already has the most important part to a bright future; a loving family.
I continue to send you and your family good thoughts.
Julie
Gloria, the midwife immediately suspected that Abigail had Down Syndrome when she was born. Since she was born at home, we (my son and I, while his wife rested after the delivery) took Abigail to the doctor, and then to the lab to have blood drawn for the chromosome testing. So we suspected Down Syndrome, but it was not confirmed for over a week. I don't know what signs the midwife saw; she looked fine to me. I showed a picture of her to one of my friends who has a Down Syndrome child, and she immediately knew that Abigail had Down's--she said she could tell from the way her skin was around her neck.
My husband has ordered a couple of books, so we can educate ourselves on this. The Internet has lots of information, but it's hard to srot out what is really true. My son and his wife will be working with the Early Childhood Intervention services to get therapy started as soon as possible. He says they even start speech therapy in infancy now. Very different from 30 years ago, when Down Syndrome was a pretty bleak diagnosis. Even my 1982 AMA medical manual sounds grim on it.
To everyone, thank you for your concern. I really appreciate it. I am privileged to have such caring friends, none of whom I have ever met in person!
Love,
Martha
My husband has ordered a couple of books, so we can educate ourselves on this. The Internet has lots of information, but it's hard to srot out what is really true. My son and his wife will be working with the Early Childhood Intervention services to get therapy started as soon as possible. He says they even start speech therapy in infancy now. Very different from 30 years ago, when Down Syndrome was a pretty bleak diagnosis. Even my 1982 AMA medical manual sounds grim on it.
To everyone, thank you for your concern. I really appreciate it. I am privileged to have such caring friends, none of whom I have ever met in person!
Love,
Martha
Martha
Martha,
We're sending your whole family loving thoughts from our whole family - I'm so glad Abigail is home. A former coworker's DS daughter is in college now - times have changed, indeed. I'm sure your son & DIL have a lot to sort through (and I'm sure there are good and bad resources on the 'Net... I bet they find the good ones fast). It's heartening that Abigail will get started with the right help and intervention and services so soon. She's off to a great start in a wonderful family.
Love,
Sara
We're sending your whole family loving thoughts from our whole family - I'm so glad Abigail is home. A former coworker's DS daughter is in college now - times have changed, indeed. I'm sure your son & DIL have a lot to sort through (and I'm sure there are good and bad resources on the 'Net... I bet they find the good ones fast). It's heartening that Abigail will get started with the right help and intervention and services so soon. She's off to a great start in a wonderful family.
Love,
Sara
Martha,
Sorry you had to wait so long for a diagnosis - that must have been really hard. Now at least you know what you're dealing with and can start educating yourselves on Abigail's special needs.
You are so right that Downs is not nearly as bleak a diagnosis as it used to be. There is an adorable young lady working in my local supermarket with Downs - she is always so well groomed and seems to take pride in her appearance. She is gainfully employed, which would have been unheard of not to many years ago.
Anyhow, from your proactive attitude, I know that little Abigail is fortunate, and will get all the care and tools she needs to excel at her level. I wish all of you all the best as you learn and move forward with caring for and enjoying her.
Love,
Kari
Sorry you had to wait so long for a diagnosis - that must have been really hard. Now at least you know what you're dealing with and can start educating yourselves on Abigail's special needs.
You are so right that Downs is not nearly as bleak a diagnosis as it used to be. There is an adorable young lady working in my local supermarket with Downs - she is always so well groomed and seems to take pride in her appearance. She is gainfully employed, which would have been unheard of not to many years ago.
Anyhow, from your proactive attitude, I know that little Abigail is fortunate, and will get all the care and tools she needs to excel at her level. I wish all of you all the best as you learn and move forward with caring for and enjoying her.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Abigail has been home since Monday, and things are getting more back to normal. I went back to work Tuesday, after taking 2 weeks off to help with the other children while Abigail's parents spent most of their time at the hospital. My son took the girls to their homeschool co-op on Tuesday. A parent is required to stay all day, and they thought it was too early to take Abigail out all day. I offered to take the girls to their piano lessons on Thursday, but my DIL said that she would do it herself, and take Abigail and Jonathan (almost 2) along.
I have found some articles on line about using diet and nutritional supplements to help mitigate some of the ill effects of Down Syndrome. I hope my son and DIL are open to trying that.
Thanks again for all your expressions of concern.
Love,
Martha
I have found some articles on line about using diet and nutritional supplements to help mitigate some of the ill effects of Down Syndrome. I hope my son and DIL are open to trying that.
Thanks again for all your expressions of concern.
Love,
Martha
Martha
Hi Martha,
I'm glad that everyone's routine is becoming somewhat more normalized. Are you aware that an elevated risk of celiac disease/gluten-sensitivity exists for someone with Down's syndrome? There is also an increased risk of developing other autoimmune issues, (presumably because of the gluten-sensitivity link). I thought you might be interested in the article titled DOWN’S SYNDROME - COELIAC DISEASE /GLUTEN SENSITIVITY, at the following link, which discusses these issues:
Thanks for the update.
Tex
I'm glad that everyone's routine is becoming somewhat more normalized. Are you aware that an elevated risk of celiac disease/gluten-sensitivity exists for someone with Down's syndrome? There is also an increased risk of developing other autoimmune issues, (presumably because of the gluten-sensitivity link). I thought you might be interested in the article titled DOWN’S SYNDROME - COELIAC DISEASE /GLUTEN SENSITIVITY, at the following link, which discusses these issues:
There are major national differences in prevalence. However screening of populations with Down’s syndrome has revealed much higher prevalences (from 4-17%) depending on age of sample and country of origin. In addition other conditions frequently associated with coeliac disease – type 1 diabetes, thyroid dysfunction, skin disorders - are overrepresented among those with the syndrome.
http://www.dsmig.org.uk/library/article ... -notes.pdfWe recommend that all with the syndrome should be clinically screened by history and examination on a regular basis for features that would prompt a blood test to check for antiendomysial and/or antitissue transglutaminase antibody status. These are:
• Disordered bowel function tending to diarrhoea or to new onset constipation
• Failure to thrive as indicated using Down’s syndrome specific reference charts (Harlow
Printing 2000);
• Abdominal distension
• General unhappiness and misery
• Arthritis
• Rash suggesting dermatitis herpetiformis
• In addition it is probably prudent to test all those with existing thyroid disease, diabetes
(Holmes 2001) or anaemia. Once in a lifetime testing is not sufficient. All require regular
surveillance as coeliac disease can develop at any time.
Those with antibodies should be referred to a paediatric or adult gastroenterologist for ongoing investigation and treatment as necessary. Apparent lack of gastrointestinal symptoms does not preclude the need for further investigation. Major improvements in well being for those previously considered ‘well’ may ensue in response to a gluten free diet. Those with positive serology but with normal villous structure should be kept under regular surveillance for life as villous atrophy may subsequently develop.
Some people, despite negative antibodies, nevertheless have coeliac disease. Hence a person who tests negative on screening but has significant symptoms should still be referred for a specialist opinion for consideration of small intestinal biopsy.
Thanks for the update.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Martha,
Abigail will indeed present a serious and very meaningful learning experience -- for the whole family.
Down's syndrome comes in a full array of potentials, but with the proper support -- one never really knows what heights each of them may be able to accomplish.
I have to tell you about my next door neighbor.
His name is Michael, he is today 32 years old. He was educated through our local high school system (special ed) and further schooled at a regional training facility for young people with challenges. He has also had several health issues along they was which are common in that population, which one by one, have all been successfully dealt with.
Today he is THEE BEST bagger at the local supermarket. I always try to get on Michael’s line when I check out as I know that not only will he distribute the weight without being told, but he will put the fragile items on the top. (Much more dependable than any of the other baggers -- who are not mentally challenged). He is also the person who is charged with the responsibility of making sure every checkout line is supplied with both the paper and plastic bags to keep everyone running, and also with keeping things generally picked up and neat. He is exceptionally good at detail work!! He DOES NOT COMPLAIN. Further, he ALWAYS takes out the garbage at home without being asked!! Plus more.
He is an avid golfer, who plays on a large league of handicapped golfers at our local community golf course. And he occasionally, very proudly, wears his medals to work, medals which he has won in some pretty meaningful competitions.
Michael and his Mom attend the Annual Down's Syndrome Conference which is held at various points around the country. This past July they were at the very lovely JWMarriott/San Antonio, TX. They go to these gatherings every year because Michael loves to go to see all his friends again -- friends that he knows from attending these gigs in prior years.
Of course the concern for his Mom is that he might survive her. His Dad has passed away, and he has one older brother (he was an Eagle Scout who will need to, and of course will, take responsibility for Michael if the need arises)
Out of some difficult and challenging experiences for this family, has come quite an exceptional individual. Michael is both valued, and appreciated.
I wish for your family is that your little grand-daughter will become another of these bright stars that in their way -- teaches everyone else -- so very much.
Gayle
Abigail will indeed present a serious and very meaningful learning experience -- for the whole family.
Down's syndrome comes in a full array of potentials, but with the proper support -- one never really knows what heights each of them may be able to accomplish.
I have to tell you about my next door neighbor.
His name is Michael, he is today 32 years old. He was educated through our local high school system (special ed) and further schooled at a regional training facility for young people with challenges. He has also had several health issues along they was which are common in that population, which one by one, have all been successfully dealt with.
Today he is THEE BEST bagger at the local supermarket. I always try to get on Michael’s line when I check out as I know that not only will he distribute the weight without being told, but he will put the fragile items on the top. (Much more dependable than any of the other baggers -- who are not mentally challenged). He is also the person who is charged with the responsibility of making sure every checkout line is supplied with both the paper and plastic bags to keep everyone running, and also with keeping things generally picked up and neat. He is exceptionally good at detail work!! He DOES NOT COMPLAIN. Further, he ALWAYS takes out the garbage at home without being asked!! Plus more.
He is an avid golfer, who plays on a large league of handicapped golfers at our local community golf course. And he occasionally, very proudly, wears his medals to work, medals which he has won in some pretty meaningful competitions.
Michael and his Mom attend the Annual Down's Syndrome Conference which is held at various points around the country. This past July they were at the very lovely JWMarriott/San Antonio, TX. They go to these gatherings every year because Michael loves to go to see all his friends again -- friends that he knows from attending these gigs in prior years.
Of course the concern for his Mom is that he might survive her. His Dad has passed away, and he has one older brother (he was an Eagle Scout who will need to, and of course will, take responsibility for Michael if the need arises)
Out of some difficult and challenging experiences for this family, has come quite an exceptional individual. Michael is both valued, and appreciated.
I wish for your family is that your little grand-daughter will become another of these bright stars that in their way -- teaches everyone else -- so very much.
Gayle
Thanks for all the encouraging words, information, and stories.
Abigail is one month old today. Their lives are beginning to settle down into a routine again. DIL really wants to get things normal. Abigail is waking up more, and even crying to eat sometimes, which is a major thing to be grateful for. It's funny to realize that we are rejoicing when she cries, rather than hoping she won't, like you would with a regular baby!
In all honesty, it's pretty disconcerting to go from "a new baby--the sky's the limit" to "a new baby--maybe when she grows up she can be a bagger at the supermarket, or a greeter at WalMart." But I realize that if she had been born 50 years ago, we would have been told to put her in an institution. Compared to that, being able to hold any sort of job and be a participating member of society is wonderful! I have to keep remembering that.
Tex, I am aware that Down syndrome kids are more prone to celiac disease and a lot of other things. I have a friends whose 5-year-old Down syndrome daughter is on a gluten-free diet, despite testing negative for celiac. Mom says she can tell a difference with the gf diet. Low muscle tone throughout the body also wreaks havoc on all sorts of things, not just digestion.
Well, one day at a time. I can't read all through the DS books; too much info, too overwhelming, so it's better to concentrate on one stage at a time. They got their first bill from the hospital. It was higher than our yearly income, and we still all said, "Wow, only that much??" How messed up is a system where 10 days can cost more than a year's income, and we think that is low?? And we know there are more bills to come.
On the MC front, I am doing pretty well. The stress of Abigail's health problems hasn't put me into a flare. I have even gained a little weight. I am slowly creeping up on 120 pounds.
Thanks again. Love you guys!
Martha
Abigail is one month old today. Their lives are beginning to settle down into a routine again. DIL really wants to get things normal. Abigail is waking up more, and even crying to eat sometimes, which is a major thing to be grateful for. It's funny to realize that we are rejoicing when she cries, rather than hoping she won't, like you would with a regular baby!
In all honesty, it's pretty disconcerting to go from "a new baby--the sky's the limit" to "a new baby--maybe when she grows up she can be a bagger at the supermarket, or a greeter at WalMart." But I realize that if she had been born 50 years ago, we would have been told to put her in an institution. Compared to that, being able to hold any sort of job and be a participating member of society is wonderful! I have to keep remembering that.
Tex, I am aware that Down syndrome kids are more prone to celiac disease and a lot of other things. I have a friends whose 5-year-old Down syndrome daughter is on a gluten-free diet, despite testing negative for celiac. Mom says she can tell a difference with the gf diet. Low muscle tone throughout the body also wreaks havoc on all sorts of things, not just digestion.
Well, one day at a time. I can't read all through the DS books; too much info, too overwhelming, so it's better to concentrate on one stage at a time. They got their first bill from the hospital. It was higher than our yearly income, and we still all said, "Wow, only that much??" How messed up is a system where 10 days can cost more than a year's income, and we think that is low?? And we know there are more bills to come.
On the MC front, I am doing pretty well. The stress of Abigail's health problems hasn't put me into a flare. I have even gained a little weight. I am slowly creeping up on 120 pounds.
Thanks again. Love you guys!
Martha
Martha
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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
GREETINGS
Congrats on the new arrival-------and Louie and I want U to know that our prayers are with U all---and she knows how much she is luved----Abigail knows the feeling of luve and care that has come her way!!!!
Abigail has been born to a very caring and SPECIAL family
luve Barbara and Louie
Abigail has been born to a very caring and SPECIAL family
luve Barbara and Louie
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Happy "one-month-day" to baby Abigail - I can imagine how odd it seems to be happy for a baby to be crying... but it's a joyful noise.
Crazy about the bills, and the math. I guess we just use a separate area of our brains for 'medical math' - fortunately (since we need the sane parts for more pressing jobs).
It's good to hear that your granddaughter is beginning to thrive - and that you are thriving, too. Lots of loving thoughts to all your generations, and thanks for this heartening and encouraging update.
And along with health and hope, wishing also much joy to you all,
xox/S
Crazy about the bills, and the math. I guess we just use a separate area of our brains for 'medical math' - fortunately (since we need the sane parts for more pressing jobs).
It's good to hear that your granddaughter is beginning to thrive - and that you are thriving, too. Lots of loving thoughts to all your generations, and thanks for this heartening and encouraging update.
And along with health and hope, wishing also much joy to you all,
xox/S