More Update on Adrian

janiejoey

janiejoey

Cathlete
We found out today, that a test result came in and was positive. Our little Adrian has Down Syndrome and hearing problems. Also we think there still is a problem with his bowels, because sometimes you can tell he is in pain. Poor little guy. We don't know the extent of everything yet. It took us aback a little, but you know, he is ours, and he's beautiful and I believe he will teach us a lot about life. Joey and I (as grandparents) want to be in his life and we are looking forward to it. We may even get out our sign language books and learn those skills so we can communicate with Adrian better. We'll see how things go.

Anyone experience this in their family? Any advice out there? This is all so new to us and unexpected. We know for certain, Adrian will have a wonderful/happy and full filling life. I'll be looking up the syndrome and trying hard to find out things, but it is what it is. We can't hardly wait to start life anew with our little fella.

Just thought you all would like to know how he is doing, since a lot of you prayed, good vibes...for him. I think he will be such a blessing to us all.

Janie
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Your attitude is inspiring Janie.

I hope Adrian's bowel issue is resolved soon.

Yes, I am sure with a family like his he will be a gift to his loved ones and will in turn lead a happy life.

I have no wisdom for you either.
 
I will pray for you and your family and your sweet little one!! You are already one step ahead with your acceptance. This will help you to move forward and create a bright future for you all!

Wishing you hope~
Jenn
 
Janie, big (((HUGS)))) to you and Joey. Adrian is fortunate to have you as a Grandma!

Jeanette
 
advice

Hi,

I work with students with a host of disabilities and my advice is always have high expectations and early intervention is key. The gains that kids make are fastest in the early years and generally decrease as they get older.

I just heard this week that a student I had for 3rd and 4th grade got his driver's license. When he was my student, I really didn't think that would have been possible, but it just goes to show that there really aren't any limits. His mother always pushed and insisted on high expectations and it paid off for them.

Tracy
 
Janie,

Take a deep breath and give yourself some time to absorb the news. Which BTW is NOT awful!!! There are major support groups and organizations that help parents of Down Syndrome give their children the best life possible. And they have a great life. They are VERY loving and smiling. Your grandson is around the best thing possible. LOVE and SUPPORT of his family.

PLEASE don't read all the junk of some sites. Go directly to the Down Syndrome reputable sites. And PLEASE don't start reading yet. There will be plent of time for that later. The last thing you need is those people who predict the worst bla blah blah.

If I might ask though, why so long for the diagnosis?? Most DS babies are diagnosed at birth due the obvious features they present with or without. Such as the palmar line of their hands etc. This may mean he has a mild case.

I wish you and your family all the best. Your grandson is truly a blessing and take the time to enjoy him!!!!

ellie
 
(((HUGS))) to you and your family. My prayers are with you that all his medical issues will get better.

It is great that you and your DH want to learn sign to be able to better communicate with your little guy. Many community colleges hold sign classes.

Jenn
 
Janie, hugs to you and Adrian. I wanted to weigh in a little bit on this one. My DS (now 12) was born with severe cardiac defects. Like Adrian, all we could think about was his physical health and, after 2 surgeries, and Holy Toledo the feeding issues, he finally was more or less out of the woods when he was about 6 months old. It wasn't until much later that we found out he also has autism.

I'm telling you all this because what I think happens in cases like this is complete overload. You become so focused on the immediate problem that you can't think past it.

That makes perfect sense when you have a sick baby.

Ellie, I'm not disagreeing with you. Maybe right this minute isn't the best time to start reading, but I think please do start reading as soon as you can. Educate yourselves, find out about Early Intervention and special ed services in Adrian's community. Do go online and find the most reputable sites and support communities and have them ready when Adrian's parents are ready.

Search Amazon for books, read the reviews and pick up a few that look good.

Having a child with any kind of lifelong issue takes time to process, and that processing never ends - you'll wonder every step of the way how things will be with him. Be patient with yourselves.

And, like a previous poster stated, keep your expectations high!

Adrian and his folks are so fortunate to have you to give all that unconditional love that grandparents just do so beautifully.

More hugs to you.
 
You all are so good to me. You Always support your comrades. Bless your hearts.

From what I can gather about Adrian, They took blood from him to see if he has the syndrome, and that takes two weeks to grow, once it did, it was positive that he has Down's Syndrome. But, I don't know why it took longer to tell us. It's been a month yesterday since he was born and since they took samples of his blood. I don't know why it took so long.

We can't stop reading about it, and trying hard to get every scrap of info out there. What we don't need we toss out and keep the rest. High expectations I will have, thanks for that advice. I think I'll have to tell that to my son though. He's always been a glass half empty kinda guy. See, already he will be made to see things in a different way. Adriane is going to be a very important boy in their lives. Seeing things through his eyes will be refreshing, funny, and probably will awe everyone with his simple mind. He has been born into a family that came from Standford, Notredame and were valedictorians of these collages. Still, they will have a lot to learn and see things from a different perspective, with eyes wider open.

We will watch for other things besides Down's Syndrome. I understand though, there is a variety of things that can go wrong because of this, so we will be alert for anything that comes along.

I checked one of Adrian's hands, and thought the palmar line was on both hands(I was wrong, I think it's only on one) but I didn't see but only one hand. When I visit him next time I'll check both hands. Also his big toe and second toe are spread apart and the big toe is much longer than the rest. His tongue is big for his size, that's why he couldn't nurse, also he can't hear well, all sign of Down's Syndrome. But, I don't see (with my untrained eye) yet other signs of this syndrome. He is so little still. His eyes may be slanted, but he is part Latino, so I thought that was why, but it's more likely one of the signs also. I truly can't see anything more, so I'm assuming (and hoping) he is less severe with Down's. What ever it is we will love him no matter what.

Adrian's mommy and daddy are finding out where things are to help him, for the community support programs like special ed...I will also get a couple of books from Amazon so I may understand it better.

Thank you for all your support and suggestions, I truly needed all this advice. It helps more than you know.

Janie
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Janie,

I haven't been to these boards in forever, but for some reason checked today and saw your post. My niece (10) was diagnosed with Down Syndrome a few weeks after she was born. She was almost two months premature, so because of her size and tiny features, it was difficult to immediately tell that she had Down Syndrome. You had mentioned that it is difficult for you see certain features on your Grandson- is it possible that he has only Mosaic Down Syndrome? Have the Drs. mentioned this as a possibility? Is it a form of Down Syndrome, where the physical characteristics are less pronounced.

Anyway, I just wanted to offer some (((HUGS))) and lots of positive thoughts! My niece is doing wonderfully. She is mainstreamed into a regular classroom and with the help of a classroom aide, she does great. She plays basketball and soccer and loves to participate in the YMCA leagues. Early intervention really is key. My brother/SIL started very, very early with different therapies and services. They have worked tirelessly to find what is available and take advantage of everything they can. I remember early on they even tried different nutritional supplements and chiropractor care, as they were open to anything that could help their daughter. I'll ask them if they can recommend any websites for information, or have any other advice.

Good luck and lot of prayers and positive thoughts coming your way~~~
 
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