Questions?

As the parent of a child with Down syndrome what are some of the questions you get asked about your child? What is the most offensive question to you?Sometimes I get asked questions about Ruby that are well intentioned but then as I think on them later they bother me.
 If you are the parent of an older teen or adult child with Down syndrome do people talk over your child to you, like the child is not a person? I recently caught myself doing this when I met a man and his 16 year old son at the gas station.I quickly corrected myself and started speaking to the 16 year old and both he and his dad seemed pleased.
I really would appreciate your comments.

Ruby singing to her doll

Ruby was sitting in the middle of our living room floor this morning singing to her babydoll.She had been singing for quite a few minutes before I thought to video her. Here she is:

Update on Ruby

I have been so bad about neglecting my blog.I thought I would give an update on Ruby.
She got to come home from the hospital on Feb.2nd and was on oxygen until about 5 days ago when we were finally able to wean her completely off.
 She lost 4 lbs. off of her already tiny body.We were so happy when on the second day home she started asking for pizza.I have been feeding her lots of yogurt and giving her probiotics because taking antibiotics for over two weeks gave her horrible diarrhea.She is starting to get some of her weight back.
Ruby is getting back to herself.I'm so glad to see all the books from the bottom of the bookshelf in the floor and my little tornado sitting in the middle of them looking at the pictures.

Thank you for all the prayers that went up to the Lord for our sweet little girl.Thank you to my Facebook friends for your comments that helped me so much and cheered me up.It's nice to know so many people care.
Thank you to my wonderful friend and midwife,Helen,for bringing a delicious supper that was hot and waiting for us the evening we were able to bring Ruby home.Helen,it means so much to me that you did that for us even though you were greiving for your son and also had a husband who had just had surgery.You are so precious. And, I'm so impressed that you remembered
 13 years later that Elizabeth was born breech! I love you!

It's not easy to smile while I'm eating pizza!

Ruby was so happy to be home with her sisters.

Ruby's big brother reading to her

Make a video - it's fun, easy and free!
www.onetruemedia.com

Help Charlotte Get Home!

My friend Kelly wants to bring her beautiful daughter Charlotte home,but she needs your help.Wont you please,please,pretty please,go and donate to help bring Charlotte home to her mommy and daddy? They need the money right away!They will be traveling on February, 6th ,to go to their court date.
Follow this link to her' Covered Giveaway' there are some terrific items to win,and you will be helping give a special little girl her family.

Hurry Home Ruby

Ruby was sick with the Flu and she got pneumonia in her right lung and had to be admitted to the hospital.Today makes the 9th day that Ruby has been in the hospital.Ruby ran fever for the first 6 days.She has been getting I.V. fluids because she wouldn't eat or drink.
She has been receiving respiratory therapy with a device called,The Vest Airway Clearance System.The Vest has really helped Ruby to be able to clear the mucus out of her lungs,it compresses and releases the chest wall up to 25 times per second helping to create mini-coughs to dislodge the mucus.We were told that The Vest is used with Cystic Fibrosis patients.I was impressed with this little device.Ruby doesn't like it so much though.Poor little girl,she whines the whole 12 minutes of treatment,and because the the vest is inflating and deflating so fast it shakes her and makes her voice sound like a lamb baaing.

Ruby is also having to have oxygen,the most she has had to have is 2 liters, now she is down to 1/2 a liter.She has started drinking some fluids.The doctors are telling us if we can just get her off the oxygen she can come home.

I took Ruby's sisters to visit her tonight and she was so happy to see them.They had not seen each other since Ruby had gone to the hospital because they had all been sick with the Flu,too. When we got there Ruby's respiratory therapist was in the room and Ruby was crying,but as soon as she saw her sisters she stopped and smiled real big and said,"Hey,there!" The girls brought Ruby some stuffed animals and Ruby said,"Ooh,thank you!"

My husband has been so great all this time and has spent almost every night with Ruby.

I will be sooooo happy when Ruby can come home.I miss her pulling all the books off the shelf in the living room.The bookshelf just looks way too neat
.We all miss reading to her and wondering what she is getting into now.
I miss her telling me,"I be back," when she leaves the room I'm in.I miss her calling out for me saying,"Mom,mom!"

Oh,and Ruby is on the sixth floor at the children's hospital.The symbol and name of the sixth floor is a Monarch butterfly.Butterflies are the symbol for Down syndrome.Way,cool.

Ruby and' Bibiss' (Elizabeth)

Oh,thank you!

Ruby has the flu and the benefits of Signing Time

My family has been so sick with the Flu this week.I was hoping Ruby wouldn't get it but she finally did. For Christmas I got her the 'Family,Feelings,and Fun' DVD ,one of the signs on that DVD is the sign for sick.Well,Ruby has been letting us all know how rotten she feels by signing sick when we look at her and she says "kick" with a pouty face. I can't say enough how great the Signing Time video's are for helping with communication and speech.I started sitting Ruby in front of those video's when she was a tiny baby and I have lost count of how many signs she knows now.
Ruby gets so excited when I buy her a new Signing Time DVD.I bought her a new one recently when she had to have tubes put in her ears.I thought it would cheer her up the day of the procedure.I just loved seeing the surprised look on her face.She kept saying "Signs,signs.Watch!" She learns new signs within minutes after starting to watch.

Here are a couple of pics of my sweet sick princess.

A perfect fit for those with Down syndrome - The Globe and Mail

A grandmother designs clothing for people with Down syndrome. A perfect fit for those with Down syndrome - The Globe and Mail

Teenager with Down syndrome competes with Saucon Valley High School swim team | lehighvalleylive.com

Another great story of a young man with Down syndrome. Teenager with Down syndrome competes with Saucon Valley High School swim team lehighvalleylive.com

A 25 year old man with Down syndrome Runs a Restaurant

This young man is amazing to me.I want to go to New Mexico and eat in his restaurant.I would love for my whole family to get to meet him.How wonderful that his parents helped him to do this.
You can follow the link I'm going to share and read the story.In one of the comments the commenter says,"We eat at Tim's Place at least twice a month. The food is wonderful and the service is great. We have come to know Tim and expect our hugs every time we go there. The entire family is an inspiration to all of us."
Here's the link: Tim's Place:A dream followed

Tim's Place: A dream followed: krqe.com

Nazi Persecution of the Mentally and Physically Disabled

Very interesting to read the history of what happened to the mentally handicapped in Nazi Germany.I think that we have some of the same veiws on "useless life" in America today. Nazi Persecution of the Mentally and Physically Disabled leave me a comment on what you think after reading this article.

Dancer With Down Syndrome Bags First Place In Contest - Cincinnati News Story - WLWT Cincinnati

Dancer With Down Syndrome Bags First Place In Contest - Cincinnati News Story - WLWT Cincinnati

Older Child Adoption

I have such a heart for older children with Down syndrome who need to be adopted , but for now we don't qualify financially to be able to adopt.What I can do is share with you the beautiful children who are available for adoption.Are you this little girls forever family?

Isn't she beautiful! Her name is Wednesday and she was born in January, of 2003. Please,go here to Reece's Rainbow  and find out more about her.

My Brother's Life: Very Valuable Despite Down Syndrome | LifeNews.com

My Brother's Life: Very Valuable Despite Down Syndrome LifeNews.com