Seeing as we just got the karyotype results - it's Downs.

I'm Cheryl, my dh is Scott and we have four kids. Gage is 10, Madeline is 7, Mason is 3 and Lily is 7 weeks. Lily is our baby with Ds. We live in Ohio...we're pretty hippie-ish We're getting ready to do some homesteading in the country. We homeschool the kids, not sure how that will need to change with a child with Ds but we'll see. I guess I was still harboring a pretty strong hope the test would come out differently...but she's still Lily, no matter what. I just love her so intensely!!

Looking forward to getting to know you all...I've learned a lot from reading your past threads here and I'm still touched by the warm welcome when I posted with questions a week or so ago....

Hi Cheryl

I remember you from your first post when you asked possible DS in 1mth old

welcome officially to Downsyn, we give you a warm welcome to you Lily and the rest of your family.

and I know that you just love her to bits and she has got a great mom, so she is going to have a good start in life

I saw on another thread you asked about EI but I would say not to worry about that yet ( we didn't start until Hannah was 6mths ) just enjoy Lily to start with and enjoy that baby stage where everyone coo's and ahhs over her

We are always here for you and if you have any more questions, do just ask away

Hello and Welcome. Your baby girl is beautiful
I cant wait to read more about you and your family. This is really a great place and can help so much atleast it has for me. I would love to see a pic of all your kids. I cant wait to get to know you better :p

Welcome again. It will be interesting to see how the "hippee" lifestyle will work with therapy and such. I can't wait to get to hear more about you. I don't know many free spirits.

I'm glad you finally got an awnser!
I'd love to see some pictures of the whole family!
Did you post on the birth weight post? They said 10# was a record, guess not anymore!
I came across a Yahoo group for people homeschooling their DS kids, maybe they could help you out. I'm considering the idea myself.

and I love the user-name, so creative, makes me want to change mine!

I was going to tell you about the DS/homeschooling yahoo group. I think there are a bunch of parents out there homeschooling their kids with Ds.
Welcome, officially, and we look forward to getting to know your whole family better and seeing pictures and hearing about Lily as she grows!

Hi and welcome aboard! We are in Ohio too! We have a 2 year old daughter, Lauren, who has translocation down syndrome. We didn't find out until after her birth either. It was quite the shock! We also have a 4 year old son, Ethan. They are both the light of our lives! Welcome aboard! I know of another mom who is homeschooling her daughter with DS. I'll find her blog link and post it for you.

Cathy
mom to Ethan 4 yo and Lauren (DS) 2 yo

Thanks for the welcome!

here's a pic we just took last month of all the kiddos...



Cathy, we're North of Cols...are you located anywhere nearby???

Welcome!! What a beautiful little girl...and I love all your kids names!! Can't wait to hear more about your family and again, Welcome!!

Congrats! Your children are beautiful! welcome..........

Congratulations and welcome!

I'm sure you'll love it here!

Welcome!!! You have beautiful kids. I am sure that homeschooling will go great for Lily as she will have plenty of interaction within the family.

What does 'homesteading' involve?

[bigger]Welcome Aboard, Lily is beautiful.[green][/green][/bigger]

WEll here's hope..I'm still homeschooling and Austin is 2. We have 7 children...2 in college the rest at home with me.
We also homestead. We have about 50 acres and we raise calves and hay. We have a few chickens as well. Not to mention all the dogs and cats and a horse. My husbands a veterinarian. Anyway, welcome. Can't wait to hear all about Lily! I determined when Austin's karotype came back (he also had open heart surgery at a week) that He was born into OUR family. And our job was to fit his life into ours. We decided that DS would not determine our lifestyle. We want Austin to be like his brother and sisters. So far so good....with a little adjustment in the beginning with doctor appointments and therapy. But it evens out. Glad you've joined the family.
AMY

Hello and welcome. I was wondering when you would get results about Lily. Even if the test didn't turn out the way you wanted.. I bet your glad to finally have an answer. I homeschool my older three girls (well, until next year when they will all go to public school- having daily distress about that one). Unforunately, I don't really think I have much of a choice with Sadie. When she is three the public school will take over her therapy and schooling and if I refuse to put her in school, I believe I will wave any right to government funded therapy. One reason I haven't lost it about sending her to school, she is sooooo social and her sisters will be older by then. Hopefully I won't be eating my words some day- but I think she will really enjoy it! Good luck

Cheryl, Scott and family welcome to Down-syn officially. I can relate to your feelings about wanting the test results to come back differently. When I had Brock a pediatrician on rounds came in after we had been celebrating his birth for 3 hours and said, "by the way we would like to test him for Ds - his eyes and space between big toe and second toe", we were in shock, our first child so we had noticed nothing that indicated Ds.

It took our hospital two weeks to get the test results back, and believe me during those two weeks I was praying that the results would not show Ds. I was so afraid and uneducated about what a Ds diagnosis would mean. But finding this site truly educated me to all that people with Ds can do, and so relieved my initial fears. I still have some hurdles - but Brock has shown my that he is his own person, and that Ds is just a part of him.

I know you will find many other home schoolers on this site, and I know locally in my Ds group there are also many.

Best of luck - your kids are all beautiful.

Hi Cheryl,

We are in Dublin. Welcome! Have you had to do a lot at Children's Hospital yet? We were sent there when we were leaving the hospital with her for a cardio exam. No heart issues for us, thankfully.

Cathy

Welcome - looking forward to getting to know you and your beautiful angel!

[bigger][green]HI and welcome[/green][/bigger]

Hello again, and an official welcome! Glad you have the results to your test and can move foward. I look forward to seeing loads of pics of your beautiful kids & hearing about your family.

I'm rather "crunchy" myself, hard to do and be a wohm, but I try!

Cheryl and Scott and Lily

A big official welcome to you all.

I know the results of the test can be a bit harrowing but I remember thinking the night we we're told.....'things can only get better'! I also remember weeping in my twin sister arms!
But you know something Cheryl..... things have gone from strength to strength with Robert. All three of us havn't looked back since that night!

I'm Linda, Robert's mom. We live in Dublin, not Ohio, but Ireland.

I love the picture of all your kids..... looking forward to hearing all about little Lily.

I just want to add a big congratulations to all of you!!! You are so incredibly blessed. I also want to tell you we also home school our children. We have been doing this "forever" and absolutely know how you feel when you say you wonder if you should keep doing it. I wondered at first myself. One year later, I can not believe I wondered. I can not even begin to tell you how incredible of an experience this has been for everyone. My older kids have been such a Large part of MaryEllen's therapy, thanks to home schooling, and them being around to enjoy it. And I believe she is incredibly motivated by them as well. Our physical therapist has got to be the most absolute angel around. She is literally a huge part of our experience, and has fit right into our homeschooling life style. So, now a year later, I can not imagine it any other way. My older children have taught MaryEllen so much, and in return, she has taught them a thing or two. If you need anything, please feel free to pm me. I have been in close touch with some of the others who home school on this list, and there is a yahoo group like the others have mentioned. We are very blessed. I look forward to watching your little sweetie grow.

Welcome Cheryl! Lily is adorable! I can't wait to watch her grow with us!

Welcome to our family!
I have a yahoo group for homeschooling and ds....We have over 300 members now. It is growing and growing..... Here is the link: http://health.groups.yahoo.com/group/homeschoolinganddownsyndrome/

It is never too early to start preparing! Can't wait to get to know you.
Jennifer

Welcome to the group. Lily is so cute and she will amaze you with everything she does. We are all her for you.

Bonnie
mom to Emily 2 yrs and Joey 7

im so glad u found this place , i just found it and victoria is five yrs old . no matter how much our friends and family love us they will never know what we feel, this place is truly a haven, surrounded by love and understanding and dont forget every saturday is BINGO DAY!!!!!!!!

I'm so glad you posted the results! I've been reading your earlier postings, and wondering what you found out. Lily is beautiful and sounds like a strong little chickie. Did you ever find a pediatrician that respects your view on immunizations? I'm also glad you mentioned homeschooling - that's something I always wanted to do, and just assumed might not work for Clara. She's only 10 months old, but I've already learned she does best if I'm ready for the next stage.

Hi again Cheryl,

I got pulled away and didn't finish my last reply.
Were you told about any DS family resources when you got Lily's results back?

Here in Tenn we have an organization called TEIS: Tenn Early Intervention Services. They act as an umbrella organization for different therapies and services, and are a great resource. They even loaned us a carbed for Clara to use after her cardiac cath and heart surgery. At one point we thought Clara might need a more assistive carseat, and TEIS gave us info on that and advice on dealing with insurance (never needed, thank goodness!). Since we're considering moving, we called them and got contact info re: Down's services in Nashville. We've gone months without talking to them; they're not an intrusive service.

One group under TEIS is TIPS. TIPS is not therapy, but a coordinator comes to our house and discusses the goals we want for Clara, like turning,sign language,babbling. She gives us advice and info on using play to help her meet developmental goals. These are free services under Tenn Medicaid (Clara's secondary insurance). Does Ohio have any programs like this? We really feel our family has benefited from these services, and I would strongly recommend that anyone with a child at risk for developmental delays plug in, even if you don't use everything offered.

Also, even though it sounds like Lily is thriving, you might want to consider an early intervention eval, and found out how often she can be re-evaluated. Even DS babies without medical complications are at risk for delays. A developmental therapist might pick up on some tone issues that don't affect her at 7 weeks but may become a factor when she's ready to roll,etc. I respect everyone's opinion, but I just feel it's easier to prevent a fire than to put one out. It can take a long time to get a proper response and services started when you first see warning signs. It moves much quicker when you're already hooked up.

Remember there are a lot of cracks in the system, never assume you've been given all the information you need to make the best decisions for your Lily. Every family's needs are different, and Mommy and Daddy should be the final word!

Let us know what you find out,and how Lily and your family are doing.