Hi Martha, This is the first time I am reading this whole thread. First, let me start by saying congrats on your new granddaughter!! Your family must be so happy. Secondly, My heart goes out to you and your family....Abigail seems like she is a fighter and will get threw all of her health problems....But for you and your family its very hard to watch Abigail! I volunteer for children with Downs Syndrome and I can tell you that they ALL have a fighting spirit! They give back a love that is unconditional! Abigail will be just fine....my thoughts and prayers are with you and your family!
Love Robin
new granddaughter
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Thank you, Robin. I remember reading on another thread that you said you volunteer with children who have Down syndrome, and I was so glad that there are people like you who do that.
Abigail is a darling, and we all love her so much. She can turn over tummy to back and back to tummy, and if you put your hands behind her feet, she pushes really hard to try to crawl. She likes to stand up, too, and when you hold her hands, she straightens her legs. She doesn't have the strength to 'stand' very long, but she sure does try hard. She is always very good natured. In fact, the first time I heard her cry since the day she was born was on Sunday, when she had pneumonia and had just gotten a shot, and felt really bad.
Love,
Martha
Abigail is a darling, and we all love her so much. She can turn over tummy to back and back to tummy, and if you put your hands behind her feet, she pushes really hard to try to crawl. She likes to stand up, too, and when you hold her hands, she straightens her legs. She doesn't have the strength to 'stand' very long, but she sure does try hard. She is always very good natured. In fact, the first time I heard her cry since the day she was born was on Sunday, when she had pneumonia and had just gotten a shot, and felt really bad.
Love,
Martha
Martha
Martha....You will probably never hear Abigail unless there is something bothering her ,children with Down are very very content. Children with Down syndrome don't know they have a disability, to them they are normal and everyone else has a disability. Believe it or not is some ways they are right for thinking that way. To a child with a handicap everyday is a new experience and they cant wait to learn from that day. Children with Down also might not be high on the IQ level but let me tell you, you show them something they never forget it. I am sure you and your family know all about the syndrome. But if I could ever help you with anything it would be my pleasure. Enjoy Abigail she is truly a gift from god!
Love Robin
Love Robin
Thanks for the offer, Robin.
I'll try to pull my mind together and PM you some questions. I've read a couple of books and several blogs, but they were pretty overwhelming. Too much information to take in at once. I realize that I need it in smaller chunks. My husband likes all the facts, figures, and statistics. I like the stories of people's lives. But I do know that each person is different and the story of someone's life that I read about won't be Abigail's story. She will have her own story.
Love,
Martha
I'll try to pull my mind together and PM you some questions. I've read a couple of books and several blogs, but they were pretty overwhelming. Too much information to take in at once. I realize that I need it in smaller chunks. My husband likes all the facts, figures, and statistics. I like the stories of people's lives. But I do know that each person is different and the story of someone's life that I read about won't be Abigail's story. She will have her own story.
Love,
Martha
Martha
Martha,
I haven't been on the board for a while and just finished reading thru this whole thread.
Congratulations on that precious little Granddaughter.
I can tell that nothing but caring and love are going toward her well being.
I agree wholeheartedly with the advice that Robin and Lesley have given you.
There are so many wonderful resources now compared to years ago for not only the Down's child, but
for the family as well.
Long story, short, my husband and I took custody of my little 7 year old Grandson at the end of December.
Caleb was born 3 months premature, weighing 2-1/2 pounds at birth. He was in the neo unit for 3 months.
He showed signs of being behind from the get go. Sitting, walking, talking, etc...
Kindergarden was one struggle after another with him showing so much frustration, crying, stating that he didn't want to go.
So, I took on a mission last year with the school district to have their school phychologist test Caleb and I also set an appointment with a really well known Children's Hospital's Neuro Develpment Center to have him tested.
Diagnosis: Intellectual Cognitive Disabilities.
I met with teachers, doctor's, whoever I had to, to see what could be offered for the benefit of Caleb
Wonderful, wonderful, caring and looking out for Caleb's best interest, people.
They set up an Individualized Education Plan, where Caleb has 3 teachers this year. A special intervention teacher,
a speech teacher and his 1st grade teacher.
I can only share the remarkable turn around with Caleb's disabilities this year and he is so eager to take everything
in and so proud at the least little accomplishment.
I can relate also to what Robing and Lesley have shared with you pertaining to the love and compassion that these little children give. Caleb is the most loving and grateful child and shares that with us everyday. There is a joy that he brings to my heart, that I can't even describe.
Try not to get overwhelmed and take one day at a time with Abigail. She will be just fine and pull out emotions and feelings that you never knew existed...
Love
Dee
I haven't been on the board for a while and just finished reading thru this whole thread.
Congratulations on that precious little Granddaughter.
I can tell that nothing but caring and love are going toward her well being.
I agree wholeheartedly with the advice that Robin and Lesley have given you.
There are so many wonderful resources now compared to years ago for not only the Down's child, but
for the family as well.
Long story, short, my husband and I took custody of my little 7 year old Grandson at the end of December.
Caleb was born 3 months premature, weighing 2-1/2 pounds at birth. He was in the neo unit for 3 months.
He showed signs of being behind from the get go. Sitting, walking, talking, etc...
Kindergarden was one struggle after another with him showing so much frustration, crying, stating that he didn't want to go.
So, I took on a mission last year with the school district to have their school phychologist test Caleb and I also set an appointment with a really well known Children's Hospital's Neuro Develpment Center to have him tested.
Diagnosis: Intellectual Cognitive Disabilities.
I met with teachers, doctor's, whoever I had to, to see what could be offered for the benefit of Caleb
Wonderful, wonderful, caring and looking out for Caleb's best interest, people.
They set up an Individualized Education Plan, where Caleb has 3 teachers this year. A special intervention teacher,
a speech teacher and his 1st grade teacher.
I can only share the remarkable turn around with Caleb's disabilities this year and he is so eager to take everything
in and so proud at the least little accomplishment.
I can relate also to what Robing and Lesley have shared with you pertaining to the love and compassion that these little children give. Caleb is the most loving and grateful child and shares that with us everyday. There is a joy that he brings to my heart, that I can't even describe.
Try not to get overwhelmed and take one day at a time with Abigail. She will be just fine and pull out emotions and feelings that you never knew existed...
Love
Dee
"What the heart gives away is never gone ... It is kept in the hearts of others."
Dee, thanks so much for sharing that about your grandson. You really took the bull by the horns to make sure that Caleb gets the education and care that he needs. It's so important for kids to have an advocate.
I love that he is so proud of his accomplishments; you have given him that!
It's easy to get overwhelmed when we try to visualize Abigail's whole life, and try to anticipate what she's going to need. Some of that has to be done--my son is hoping to attend a seminar that will help them set up the financial aspects correctly to assure that her needs will be taken care of. But for a lot of the other things, we have to take them one day at a time. It sometime seems like we need to think of everything NOW and get things moving NOW so that she will get the best possible start, but I know that's anxiety speaking.
Abby is a sweet little girl, and already bringing us all such joy.
Love,
Martha
I love that he is so proud of his accomplishments; you have given him that!
It's easy to get overwhelmed when we try to visualize Abigail's whole life, and try to anticipate what she's going to need. Some of that has to be done--my son is hoping to attend a seminar that will help them set up the financial aspects correctly to assure that her needs will be taken care of. But for a lot of the other things, we have to take them one day at a time. It sometime seems like we need to think of everything NOW and get things moving NOW so that she will get the best possible start, but I know that's anxiety speaking.
Abby is a sweet little girl, and already bringing us all such joy.
Love,
Martha
Martha
Martha,
Hope Abby is well on her way to get through her latest health challenge. Thank you for letting us follow along on her journey through your updates. It is a fascinating story, and I pray it will keep getting better. So glad to hear about how much you're enjoying her.
Love,
Kari
Hope Abby is well on her way to get through her latest health challenge. Thank you for letting us follow along on her journey through your updates. It is a fascinating story, and I pray it will keep getting better. So glad to hear about how much you're 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
An update on Abigail:
She is now able to sit up without falling over for quite a while, which delights us all. She is 6 months old now.
On Wednesday, she will start a 3-week inpatient feeding clinic program at Our Children's House at Baylor. My sister, who is an NICU nurse, says that the Baylor feeding program is one of the best in the country. The goal of this is to teach Abby to eat and swallow properly, and want to do it, and to wean her off the NG feeding tube. The hope is that she will not have to have a gastric tube, feeding her directly into her stomach. So far the NG tube has worked okay. She only pulled it out once. She has gained some weight, and it's very obvious that her parents are not as stressed as they were when they were trying to do all her feedings orally. Her mom will stay with her at the hospital.
I'd appreciate your prayers and good wishes that this will be helpful to Abigail, and also that the insurance will pay for it!
We've got the other three kids taken care of, between grandparents, friends, and neighbors.
Love,
Martha
She is now able to sit up without falling over for quite a while, which delights us all. She is 6 months old now.
On Wednesday, she will start a 3-week inpatient feeding clinic program at Our Children's House at Baylor. My sister, who is an NICU nurse, says that the Baylor feeding program is one of the best in the country. The goal of this is to teach Abby to eat and swallow properly, and want to do it, and to wean her off the NG feeding tube. The hope is that she will not have to have a gastric tube, feeding her directly into her stomach. So far the NG tube has worked okay. She only pulled it out once. She has gained some weight, and it's very obvious that her parents are not as stressed as they were when they were trying to do all her feedings orally. Her mom will stay with her at the hospital.
I'd appreciate your prayers and good wishes that this will be helpful to Abigail, and also that the insurance will pay for it!
We've got the other three kids taken care of, between grandparents, friends, and neighbors.
Love,
Martha
Martha
Well, insurance hasn't come through. DS started a new job in Feb, and the insurance transfer paperwork isn't done yet. No word on how long that will take. The hospital can hold Abby's place for a week or so, then she'll have to go on a waiting list again.
The plan is for me to care for the 2-year-old during the days, but I will be gone to Thailand for all of May, because my other son and his wife are having a baby. So hopefully Abigail can get into the program soon and be finished with it before I leave, or care of the other children will be a problem. Your prayers are appreciated. Thanks.
Love,
Martha
The plan is for me to care for the 2-year-old during the days, but I will be gone to Thailand for all of May, because my other son and his wife are having a baby. So hopefully Abigail can get into the program soon and be finished with it before I leave, or care of the other children will be a problem. Your prayers are appreciated. Thanks.
Love,
Martha
Martha
