Tuesday, June 30, 2009

"Brand NewMan: Reflections on Fatherhood and Down syndrome".

I found this on the Ds group I belong to and thought it was a good idea so I'm passing it along here.
I thought maybe some of you would know a Dad that would want to share his story with Mr .Mike Burgess for his book.His contact onfo is at the end of this post.

Many of you who have children with Down syndrome may be familiar with the book"Gifts", edited by Mrs. Kathryn Soper. If you are like me, the stories from allof the mothers out there were inspirational, and more than one has brought me totears. Knowing that there are others who have walked down the same path beforeme has been a blessing, especially in the beginning. One day, I sent Mrs. Soperan email asking whether there were plans for a book that focused more on afather's perspective. Her response was relatively simple: "No.....I hope you'llconsider creating the book you'd like to read." After much thought, I've decidedto do just that. I am looking for vignettes from fathers, brothers, uncles,grandfathers and self-advocates for "my" book. The working title is "Brand NewMan: Reflections on Fatherhood and Down syndrome". Write about what moves you,what inspires you, what you wished you'd known. I want this book to bring asense of peace to new fathers who are faced with the unknown, who arequestioning God and his infinite wisdom, and I want to reassure them that Downsyndrome is just one more way we are all the same and we are all different.People are people first, and my hope is that when this is all said and done,more people embrace this philosphy.You are welcome to pass this on to anyone who may be interested. If you have astory to tell, please feel free to contact me. Even if you don't, send me anemail letting me know what's on your mind. I will endeavor to answer every emailpromptly, but remember, I am a father and husband first, so it may take a day ortwo.Thanks.
And I look forward to hearing what you have to say.
Contact Info : Mike Burgess - mike.burgess@alumni.duke.edu or mike_burgess@comcast.net Phone# 864-314-3544

Sunday, June 28, 2009

Don't forget

My nursing cover-up giveaway ends on Tuesday, June 30th.So if your interested in winning and haven't left a comment yet then go ahead and leave one now.

Sunday Verse

This is one of my favorite Bible verses,it really helps me to remember this verse on those days when I feel like life is just too much.

Philippians 4:13 KJV
I can do all things through Christ which strengtheneth me.

Friday, June 26, 2009

Treadmill Therapy Video

Research has found that Treadmill therapy is supposed to help the child with Down syndrome walk about six months earlier than they would have without it and their quality of walking is better.Treadmill therapy can be started with a baby at eight to ten months of age.

I'm going to try and find some type of harness that I can hold Ruby up over the treadmill with. I may have found something at Target called Walking Wings that I think will work.Ruby's PT also suggested a harness called a Gait Trainer because it has straps that go between the legs as well as on the shoulders but then we decided this harness is probably too big for Ruby.Our goal right now is to be able to do this therapy once daily for eight minutes.

Sunday, June 14, 2009


Ruby did so well with her vital stimulation therapy,she only had to have three sessions and now she is able to eat a whole jar of the 2nd foods three or 4 times a day.I'm so happy she is eating well,maybe now she will put on a little more weight.She will only have to go to speech therapy once every six weeks again instead of weekly.This is great because I just found out that her occupational therapist wants to start seeing her weekly.So at least I will only have PT and OT to go to instead of ST, OT and PT :) We will also be having her fitted for SureSteps as advised by her PT and she will be starting treadmill therapy soon.We just have all kinds of exciting things going on around here.

Nursing cover up Giveaway

I'm going to be giving away these two nursing mother cover ups.I made them with boning in the top so that the material will lay open so you can see your baby but no one else can.As you can see one is pink with large dark brown polka dots and the other is green seersucker with dark, light blue and yellow flower clusters.I'm going to be picking the winners on June 30Th using random.org.So let me know which one you want and let others know about my giveaway too :)

Sunday, June 7, 2009

Sunday Verse

Matthew 6:26
Behold the fowls of the air: for they sow not, neither do they reap , nor gather into barns; yet your heavenly Father feedeth them. Are ye not much better than they?

His Eye Is On The Sparrow
lyrics by Civilla D. Martin ,music by Charles H. Gabriel

Why should I feel discouraged, why should the shadows come,
Why should my heart be lonely, and long for heaven and home,
When Jesus is my portion?
My constant friend is He:
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.


I sing because I’m happy,
I sing because I’m free,
For His eye is on the sparrow,
And I know He watches me.

“Let not your heart be troubled,”
His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.


Whenever I am tempted, whenever clouds arise,
When songs give place to sighing, when hope within me dies,
I draw the closer to Him, from care He sets me free;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.


Civilla Martin, who wrote the lyrics, said this about her inspiration to write the song ,

Early in the spring of 1905, my hus­band and I were so­journ­ing in El­mi­ra, New York. We con­tract­ed a deep friend­ship for a cou­ple by the name of Mr. and Mrs. Doo­lit­tle—true saints of God. Mrs. Doo­lit­tle had been bed­rid­den for nigh twen­ty years. Her hus­band was an in­cur­a­ble crip­ple who had to pro­pel him­self to and from his bus­i­ness in a wheel chair. De­spite their af­flict­ions, they lived hap­py Christ­ian lives, bring­ing in­spir­a­tion and com­fort to all who knew them. One day while we were vi­sit­ing with the Doo­lit­tles, my hus­band com­ment­ed on their bright hope­ful­ness and asked them for the se­cret of it. Mrs. Doo­lit­tle’s re­ply was sim­ple: "His eye is on the spar­row, and I know He watch­es me." The beau­ty of this sim­ple ex­press­ion of bound­less faith gripped the hearts and fired the imag­in­a­tion of Dr. Mar­tin and me. The hymn "His Eye Is on the Spar­row" was the out­come of that ex­per­i­ence.
-- Civilla Martin

Tuesday, June 2, 2009


I'm so excited that Ruby is doing well with her therapies but couldn't they just let you be happy about an achievement for a few days before you have to start thinking about what's next,what your child still is not doing.I know it's the therapist job to point out things your child needs to be doing but when your child makes an accomplishment can't they just give you a couple of days.I guess sometimes I just feel overwhelmed with everything that needs to be learned.
Well,off to therapy!

Ruby's thyroid

I took Ruby for her re-check on her thyroid yesterday and this morning I got a call saying her thyroid numbers were normal.Something less to worry about for now :)
Here are some pictures my husband took of Ruby getting around in our living room.

Young Mesquite man with Down syndrome becomes Eagle Scout | News for Dallas, Texas | Dallas Morning News | Mesquite News

Young Mesquite man with Down syndrome becomes Eagle Scout | News for Dallas, Texas | Dallas Morning News | Mesquite News

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