Ruby's Life

Questions?

2012-05-25T21:01:00.000-05:00

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

2012-05-08T15:56:00.001-05:00

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

2012-02-21T21:29:00.000-06:00

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!

2012-02-01T14:34:00.000-06:00

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

2012-02-01T00:51:00.000-06:00

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

2012-01-22T07:41:00.000-06:00

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

2012-01-20T02:56:00.000-06:00

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

2012-01-20T02:43:00.000-06:00

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

2012-01-20T02:11:00.001-06:00

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

2012-01-16T14:12:00.000-06:00

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

2012-01-15T20:24:00.000-06:00

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

Older Child Adoption

2012-01-12T11:20:00.000-06:00

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

2012-01-09T16:25:00.000-06:00

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

Fun at the park

2012-01-06T20:45:00.001-06:00

I was sitting at the computer this afternoon and my girls and little boy came to me and wanted to go to the park.Ruby even got in on it,she said,"Mom,park?" She then ran and got her shoes and socks.Well,needless to say my husband and I couldn't resist such cuteness. Here are some pics of our fun at the park.The last two pictures show how upset Ruby was about having to leave the park to go home. :)

Faith Set Free: One Less Orphan Fundraiser

2012-01-04T13:00:00.000-06:00

Go take a look at this fundraiser!There are some wonderful prizes and you get to help bring a precious little girl home to her family. Faith Set Free: One Less Orphan Fundraiser

Grab This!

Wordless Wednesday 2012

2012-01-03T14:53:00.001-06:00

Happy 2012!

Rag doll and felt foods

2011-12-30T16:14:00.000-06:00

I had fun this Christmas making things for my kids.My ambitions were too big and I didn't start early enough though.I didn't get everything finished so I will be sewing up a few more presents.

I think one of my favorite items to sew was the little rag doll that I made for my daughter Catherine.I can't wait to get started on dolls for my daughters Rebecca and Ruby. I used Simplicity pattern 2809 ,
I bought my pattern on sale for a $1.50 at my local Joann fabric store.

My 12 year old daughter Elizabeth helped me make felt food for Catherine and Rebecca.We had fun staying up to all hours of the morning listening to Christmas music and cutting,stuffing and sewing felt food. I used Simplicity pattern 2445 for the fruit and veggies and free patterns from the internet for the snack foods.

Here are some links to free felt food patterns:
Bag of chips and sandwich

Bacon, eggs and pancakes

Slice of pizza

Bread and pumkin pie slice

Hidden Angels: American Families Saving Children With Down Syndrome - ABC News#.TvktNw5H7Gi.blogger#.TvktNw5H7Gi.blogger#.TvktNw5H7Gi.blogger#.TvktNw5H7Gi.blogger#.TvktNw5H7Gi.blogger#.TvktNw5H7Gi.blogger

2011-12-26T22:18:00.000-06:00

Hidden Angels: American Families Saving Children With Down Syndrome - ABC News#.TvktNw5H7Gi.blogger#.TvktNw5H7Gi.blogger#.TvktNw5H7Gi.blogger#.TvktNw5H7Gi.blogger#.TvktNw5H7Gi.blogger#.TvktNw5H7Gi.blogger

Ruby's hearing and our family Christmas Tree

2011-12-17T00:23:00.000-06:00

Ruby had her hearing tested today to see if the tubes in her ears are helping.She did great on the test and we were told she has perfect hearing.Yay! I can tell that Ruby is hearing better,she is talking clearer and has added many new words to her vocabulary.

Ruby has done so well with her sign language.One day last week my son Russ built a fire in our fireplace and Ruby came running to find me and she signed and said."Tree's hot!"

My son Grady came home yesterday from college for Christmas.We put up our Christmas tree tonight and my daughter Meagan made a video to share our fun.Hope you enjoy it.

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

Ruby's new hat

2011-11-16T23:07:00.001-06:00

I made Ruby a new hat to help protect her ears from the cold wind.Here she is modeling it for me.

Felt Fun with the Cuter Book

2011-11-14T14:29:00.001-06:00

I bought this book last week for my teenage daughter.

She just LOVES it and has made many of the cute little animals.My 12 and 10 year old daughters saw how easy they were to make and they started making them too.

They traced the patterns out of the book onto tracing paper,then used the patterns to cut out the felt.The animals are little,about 2 inches,and are very easy to hand sew and stuff with batting.

Some of the faces are embroidery.The book has very good simple instructions.

Some of the faces are just glued on with craft glue.

We bought googly eyes for some of them.

Some are a little scary! :)

My girls have had hours of fun together.

I Wished for You Book Giveaway

2011-11-12T19:06:00.001-06:00

November is National Adoption Awareness month.In honor of my brother, who my mother gave up for adoption at birth,and his wonderful adoptive parents.I'm giving away this beautiful children's book.

"I Wished for You" by Marianne Richmond, is the story of a mother telling her adopted child his adoption story.

If you would like to win this book just leave me a comment telling me why you would like to have it.I will be choosing a winner November 21st. Open to United States only.

Steamers Employing People with Different Abilities

2011-11-02T19:08:00.000-05:00

Order Steamers Jam

MyOwnPet Balloon and Canines for Disabled Kids

2011-11-02T16:28:00.000-05:00

I was asked to share about these cute balloon pets,called MyOwnPet Balloon.I went and looked at the website and they even have a Reindeer just in time for Christmas. I know my own children love to play with balloons and Mylar balloons last for weeks and weeks.There are several different animals to choose from.One of my favorite,it's hard to choose a favorite,is the Poodle .Which one is your favorite?When they start to deflate you can have them re-filled.
What a great cause to help too. $5 from every purchase goes to Canines for Disabled Kids, a non-profit organization,helping children with disabilities gain independence and participate more fully in society.

Hearing problems and Ruby has Atlantoaxial Instability

2011-10-31T18:30:00.000-05:00

Ruby got tubes put in her ears today because she was having problems with having fluid behind her eardrums.Ruby was a very good girl for the nurses who were getting her prepped for her surgery. The actual procedure was over in about five minutes!

On the way to the hospital at 6 a.m.

It is very common for people with Down syndrome to have some problems with their hearing.Children with Down syndrome should have their hearing checked once a year until the age of three and then every other year thereafter.Ruby was having a mild hearing loss because of fluid.This kind of hearing loss is called conductive hearing loss . Here is a talk on Hearing Concerns

Because of needing to get ready for her surgery today we were told by the anesthesiologist office to take Ruby to Children's hospital for x-ray's of her neck.We took Ruby this past Thursday. The radiologist was great and did an excellent job with Ruby.Of course miss Ruby was her awesome little self and did what I asked her.
Ruby was placed on a little stool and I held onto her from the front and the technician was behind her holding onto her.We needed to get a side view x-ray with Ruby looking down and I said,"Ruby,look at your shoes." She did look down and the tech was able to get what was needed.When we needed her to look up my husband stood up over us and snapped his fingers to get her to look up.Which she did.

The x-rays were needed to see if miss Ruby was one of the 10-30 percent of people with Ds that has Atlantoaxial Instability (AAI) . It is VERY important if you have a child with Ds to get these x-rays done.It is recommended that all children with Ds get these x-rays before having surgery. AAI affects the top 2 vertebrae of the neck.The lax joints allow too much movement and can cause spinal cord injury. For now Ruby has a mild case which means she will not be able to participate in contact sports,jump on trampolines,do somersaults,or do anything that will cause too much stress on her neck.I will be making an appointment for her with an Orthopedist and she will need to have these x-rays repeated when she gets older.
Please,I can't stress enough how important this is.It can mean life or death for our special angels.