I failed my 1st challenge :(

BUT...I made a goal to do at least 21 out of 31 days and IF I do one every day for the rest of the month I will only have failed by ONE. I will try my best even if the posts aren't directly related to information about Ds.

We have a BIG milestone happening for Isaiah. Two frustrating issues with him were his lack of doing anything with his hands except chewing/sucking on them and his lack of patience while eating. He is slowly but surely coming around with doing more with his hands and will hold toys now and actually look at them and put them in his mouth and even attempt to push buttons to get music to play. He has a long way to go to catch up to age appropriate but he will get there...on his own time.

A couple days ago I did something I've never done before with any of my kids except for birthday cake. I confess...I don't like big icky/sticky messes all over kids or highchairs or floors but I sucked it up and went for it in hopes of Isaiah trying to pick up pieces of food to finger-feed himself.

Yogurt...to start off with even just licking or mushing his hand to his mouth to taste food. He had NO desire to even try until I got it started and even then it took me to force his hand into the yogurt and to his mouth. And then I added puff cereal snacks to the mix and he was able to grab them with his fist and work them into his mouth.
Today I gave him chunks of bananas and prunes (he still has a major constipation problem going on) and he was much more willing and successful at it. He was even able to grab the puff cereal much easier and had more success getting them into his mouth. He EVEN attempted to chew everything which is HUGE for him. He has no idea what the concept of "chewing" means and EVERYTHING goes straight down...big chuncks and all. Very seldom will he choke/gag. I've never seen anything like it.

God's Plan...Day 12.

When Joey was a few months old I found an amazing group of friends online that belonged to a group we called "T/21 online". It fell apart a few years later, probably due to Facebook and MySpace...not really sure, but I'm so happy that we are coming back together through Facebook. Today the life of a little girl named Renee who had Ds and cystic fibrosis was celebrated at her funeral (a funeral is a celebration of one's life...as sad as the day is we should also remember all the good and celebrate the days we had with a loved one). She was only 10 and I remember her so clearly from T/21 online days. I can only imagine the pain the family is experiening as they now start their new life...their new normal...after the death of their sweet daughter/sister.


This video was posted by a member of T/21 online today and I just had to share.



***Update on Isaiah's eye appointment. He has farsightedness which will require glasses. He will also need to be seen in 6 weeks by another specialist as the eye doctor today noticed his optic nerves are larger than normal. He's not sure what this means...if anything...but wants it further looked into.

***Also patiently waiting to hear about the neck x-rays that were sent to Minneapolis for both Joey and Isaiah.

Vikings...Day 11.

Ok...this has nothing to do with Down syndrome. My original plan for today's post fell through and JUST when it started "falling" Noah started screaming with excitement that HE has the same number YES! YES! YES! I'm NOT at all a Vikings fan (or for that matter a sports fan) but I had a feeling it had something to do with someone named Randy Moss.

I noticed Noah was wearing a certain shirt and asked why...all he said was...VIKINGS SPIRIT!

10-10-10....Day 10.

Oct. 10, '10...only happens once every 100 years. Most of us will only see that happen once in our lifetime.

I thought I would post the Top 10 reasons why having a loved one with Down sydrome ROCKS!...our reasons anyway.

#10...We will have a buddy (well 2) for life.

#9...We will have a reason to act crazy and dance around the kitchen with guitar wooden spoons for much longer.

#8...We are learning a 2nd language...Sign Language.

#7...We will have someone to hold in our laps and carry on our hips longer.

#6...We will have more years of someone being TOTALLY excited when you walk in the door.

#5...We get to meet some amazing families even if just via the internet.

#4...Hugs and kisses never seem to run out.

#3...We are taught to forgive more easily.

#2...We are taught to practice patience everyday.

AND...

#1...We will always be loved unconditionally. Yes, we will always be loved that way by God too but people...not always so much.

More Alike Than Different...Day 9.

By the way...if you're looking for "Day 8"...you won't find it because there isn't one :(

Gianna Jessen's Story...Day 7.

If you haven't taken the time to watch Gianna's story yet (I know it's been around Facebook lately) please do. I don't think you will regret the 15 or so minutes it takes to listen. I know this is Down syndrome awareness month and her story has to do with abortion but in today's world Ds and abortion go hand in hand...sadly. With the new advances in medical technology and all the new prenatal tests being offered to women to test for Ds or other chromosomal abnormalities the abortion rate for those whose tests come back positive/or highly likely is 90%.

I got to thinking today after a conversation about the test women can have to see if they carry the genetic gene that gives them a super high chance at getting breast cancer. If the test comes back positive many of these women choose to have their healthy breasts removed before cancer strikes. This is a great advancement in medical technology for those who have concerns and take this path...a test and then treatment to prevent death...to save a life.

Then in the same medical advancements arena you have the newer prenatal tests to check for Down syndrome...and then, probably depending on how much one value's life, a decision will be made if the test comes back positive for something the parent did not want...the decision of life or death...abort or not to abort. 90% choose abortion.

A test to save lives in order to prevent breast cancer and a test to end life in order to make ones life easier...the life of the parents whose future child MAY have been born with Ds. I say MAY b/c a test is a test...there are no guarantees or certainties. However, there is ONE certainty that is fact through and through...God created life...ALL life...and designed everyone just the way He wanted. What a slap in His face when we reject what was given to us by doing HIS job and ending the life He created.

Shouldn't all medical tests be for one reason and one reason only...to try to SAVE lives? I think so.

Down Syndrome Creed....Day 6.

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace


I first read this creed/poem when Joey was a teeny tiny newborn and Ds was SO new to my world. I cried many times over the words of the creed because it seemed like the baby/child/teen/adult with Ds "reading" these words was pleading to the world to just accept them as they are and who they are. They are God's PERFECT creation just like anyone else. God makes NO mistakes. I believe "the least of these" were possibly put on this earth to test us so see how accepting we are and if we love conditionally or if we love like God does...UNconditionally. I've only been able to fully experience Ds for a little over 5 years and they have honestly been some of the best years of my life. The creed is SO true. When our typical kids would reach milestones they were so exciting to witness, like the first steps, first words, etc. But when Joey reaches milestones they are some of THE most exciting events in our lives. It is something I don't think you can fully imagine until you are in those shoes and love someone who has a disability. The majority of kids walk by age one but for Ds it can come much later. Joey started around age 2 and Isaiah is 2 1/2 now and is far from walking. I imagine the day Isaiah takes his first steps will be even more exciting than when Joey did. This past summer Joey first learned to jump. He wanted to jump in the WORST way for SO long. He would try and try and try but his little body and weak muscles from low tone would just not allow him to. But the day his little feet lifted off the ground...both at the same time...I think we all had tears in our eyes, including Joey. I don't know who was happier and prouder...him or us. He was SO proud of himself that he jumped and jumped and jumped and jumped from one end of the room to the other. I have a video but I can't get it to upload :(