Sunday, October 25, 2009

The Beatitudes of theExceptional Child

The Beatitudes of theExceptional Child by Andre Masse C.S.E.

Blessed are you who take time to listen to difficult speech for you help us to know that if we persevere we can be understood.

Blessed are you who walk with us in public places and ignore the stares of strangers for in your companionship we find havens of relaxation.

Blessed are you who never bid us to "hurry up" and more blessed you who do not snatch our tasks from our hands to do them for us, for often we need time more than help.

Blessed are you who stand beside us as we enter new and untried ventures for our failures will be outweighed by the times when we surpise ourselves and you.

Blessed are you who ask for our help for our greatest need is to be needed.

Blessed are you who help us with the graciousness of Christ Who did not bruise the reed and quench the flax for often we need help we cannot ask for.

Blessed are you when by all these things you assure us that the thing that make us individuals is not in our peculiar muscles, not in our wounded nervous system, not in our difficulties in learning but in the God-given self which no infirmity can confine.

Saturday, October 24, 2009

Buddy Walk pics

We had a wonderful time at the Buddy Walk today.The weather was beautiful and all of my children really enjoyed themselves.There were plenty of games to play,face painting,hair painting,cool motorcycles to sit on,bouncy houses ,and a live band.My teenagers enjoyed watching the teenagers who had Down syndrome enjoy the band just like they do.More alike than different.
Of course the batteries on my camera ran down and I didn't have extras with me so I didn't get to take pictures of Ruby getting her hair painted and sitting with me on a motorcycle.My super sister-in-law,April and her husband Scott,got some pictures though and promised to e-mail them to me,so hopefully I will be able to share those later.

Friday, October 23, 2009

Thank you and Buddy Walk

First I want to say," Thank you," to all the people who left comments on my previous post about Ruby's weight.I felt much more at ease after reading all the great advice and people saying we know what your going through.Even though I'm a mom of many there are still new things for me to learn about having a child with special needs.Thank you again for so much wonderful support.
I take Ruby for her 15 month check next week and will have an update on her weight then.

Tomorrow is the Buddy Walk here.I'm so excited, this will be my first to attend!We got our t-shirts today and were also given a ball cap,tote bag and tumbler!Hopefully the weather cooperates it is supposed to be in the mid 70's .
I will post pictures of our walk tomorrow!

Thursday, October 15, 2009

Not gaining enough weight

Ruby has been having trouble gaining weight since she turned a year old.Right now at 14 months she weighs 15 lbs 5 oz. which is in the 25th percentile on the Ds charts.Her pediatrician has been keeping an eye on her weight and I knew that Ruby has been eating o.k. and taking plenty of bottles, so I wasn't too concerned.
That is until I took Ruby to have her heart checked and they decided to compare her weight on a typical children's chart,telling me she was in the 5th percentile, and sent in a dietitian to talk to me about what I feed her.I started feeling a little panicky and then the dietitian called me at home the next day to tell me how to increase the calories in Ruby's formula.She was very nice and only trying to be helpful but when we got off the phone I called my husband and had a good cry.I have always made sure to give Ruby plenty of bottles and I put either rice cereal or oatmeal in each of her bottles.She takes about 8 bottles or more a day and until just the last couple of weeks has taken two or three jars of baby food a day.Now she has decided that she doesn't want the baby food.
I have decided to try the Nutrivene D formula and see if that will help Ruby.I gave literature and the website info to Ruby's doctor and she called me and said she thought that these vitamins would be good for Ruby and saw nothing wrong in my giving them to her.So I ordered the Nutrivene and we started that this week.I'm also adding olive oil to her bottles as the dietitian suggested which is helping to add calories and has also greatly helped Ruby's constipation.
I found this website and it said that,"Many children with Down syndrome are underweight when they are young. " This made me feel somewhat better.I plan to start trying to give Ruby food with a little more texture and seasoning to see if that will help her to want to eat more.I found out tonight that she loves to suck on Sour Punch Straws:)Maybe she just needs a little more taste in her food to encourage her to eat. I have read several places that children with Down syndrome like spicy food.

This is a great post by Beth at Hannah's Shenanigans about Targeted Nutritional Intervention.

Tuesday, October 6, 2009

Ruby's heart

I took Ruby for her cardiology appointment.She had a chest x-ray and an EKG done.Both tests were normal and her cardiologist said because both tests were so good she feels that the PFO has probably closed and they didn't need to do an echocardiogram this time.Ruby will not have to go back to see the cardiologist again until she turns 5!

Monday, October 5, 2009

Thyroid problems in people with Down syndrome

Hypothyroidism happens when the thyroid gland slows down or stops producing thyroid hormone.
13 to 54 percent of children and adults with Down syndrome have hypothyroidism.Hypothyroidism can be a serious problem if left untreated so it is important that children with Down syndrome be tested at birth and then yearly .Some symptoms are low energy level,slowed mental and physical development,thickening of the skin,sleepiness, and constipation.
Click here for an article I found on hypothyroidism in children with Down syndrome.

Sunday, October 4, 2009

Heart Defects in Children with Down syndrome

About 40 to 50 percent of children with Down syndrome are born with a heart defect.The most common defects are Atrioventricular Septal Defect and Ventricular Septal Defect.Survival beyond one year of age is 85 percent in all children with Down syndrome who have a congenital heart defect. Over 50 percent of individuals with Down syndrome live to be greater than 50 years old.

Saturday, October 3, 2009

Patent foramen ovale

Ruby was diagnosed with Patent foramen ovale when she was 3 months old by her cardiologist.For some reason ,I can't explain ,I have never looked up anything about this condition,which isn't like me at all,I look everything up.Maybe it was because the cardiologist assured me that this was nothing to worry about and may close all the way in time.I knew Ruby had a small hole in her heart between the left and right ventrical.

Today I looked up the definition for PFO here and here , and found that some concerns could be migraines and possibly strokes.Ruby's cardiologist wanted to see her back in a year to recheck her heart.Her appointment is October 6th and I'm praying this problem has corrected itself.I'm glad I didn't look this up before because I'm sure I would have been fretting over it. I read that it's not a concern for most people, but lets face it Ruby is already not like most people.This bit of info(With each heart beat or when a person with this defect creates pressure inside his or her chest - such as when coughing, sneezing, or straining during a bowel movement - the flap can open, and blood can flow in either direction directly between the right and left atrium. When blood moves directly from the right atrium to the left atrium, this blood bypasses the filtering system of the lungs (the lungs actually do dissolve tiny blood clots. If debris is present in the blood, such as small blood clots, it now passes through the left atrium and can lodge in the brain, causing a stroke, or another organ, such as the heart, eyes, or kidneys.) really bothered me because Ruby has a terrible time with constipation.

Ruby's Blankie from Jaxson

Ruby ooohed and awwwed over her Blankie from Lacey, Jaxson's Mom.
Lacey asked me what kind of material to make Ruby's blanket out of and I told her I trusted her judgement in picking out the material because all of her work is so pretty.I was so pleased when I got the package in the mail and opened it to find the material matches perfectly with Ruby's bedding!I wish I had a video of me opening the package because my 8 year old daughter was sitting accross from me with Ruby in her lap and much to our surprise as soon as I pulled the Blankie out of the envelope Ruby started holding out her hands and saying, "ohhhhh!"She also just adores the picture of Jaxson that is on the inside corner :)

Lacey makes beautiful Blankies for children with life threatening illnesses.Ruby is not critically ill but I wanted her to have one of Lacey's beautiful Blankies because Jaxson and Ruby share a little something "extra." Click on the link at the bottom of this post to go and look at other children and their Blankies.You can also donate to help support Lacey in giving comfort to children who have to spend alot of time in the hospital.

Jaxson's Blankies for Babes

Friday, October 2, 2009

Roadmap To Holland by Jennifer Graf Groneberg

I went to a bookstore the day after I left the hospital and Ruby in the NICU and bought all the books I could find on Down syndrome, "Roadmap to Holland" was one of the books I purchased.I sat and read slowly through it.Thinking ,yes,yes,this woman knows exactly how I feel.I cried many tears while reading.
I think everyone should read this book to help them understand what it's like to have a child with Down syndrome.

Thursday, October 1, 2009

Down syndrome Awareness Month- Siblings

This is a sweet video.I needed tissue:)


Ruby is sick with the Flu and so is most of the rest of my family.My husband took Ruby to the pediatrician for me yesterday, I was so achy I couldn't get out of bed,the doc. tested Ruby and she has the Flu so she was prescribed Tamiflu.Ruby and I have been doing a lot of hanging out on my bed taking naps, watching television,and playing with toys.Ruby is doing pretty good so far,I just pray the Tamiflu helps her and she can get through this without any complications.
I hope to feel better soon and get back to blogging more often.Ruby is doing lots of new things.She has started pulling herself up to stand on her favorite toy,she got her Sure Steps ,she has three new teeth,she can clap now,and she got a beautiful new Blankie from Jaxson's mom .Pictures to come :)