31 for 21 Blog Challenge: DAY TWELVE: 1st Birthday

It's official!  Josiah is ONE!!!!!

It's hard to believe what a difference a year can make.

Last year, at this time, I think I was running on pure adrenaline (and strength from above).  My oldest brother had just died (in September) and we had put him to rest.  Carl had had a medical emergency and was hospitalized for about two weeks.  One week later, Josiah was born.

The following several months were typical of a family embracing a new baby.  We were no different, just running on exhaustion having survived the chaos of the previous weeks.

In December, the older boys got colds.  Josiah got one - it proved to be the best thing that could have happened.  The 'cold' developed into bronchiolitis (and possible RSV).  He was hospitalized at Children's for one night.  We (he and I) were released New Years Eve day.  Two weeks later, during a follow up echo cardiogram, we would learn that Josiah had numerous holes in his heart resulting in pulmonary hypertension...not good news!  Two weeks later, we were at Children's where Josiah would undergo open heart surgery.

Josiah was released from Children's 4 days after surgery.  Six weeks later, he was fully recovered.  The weight continued to be a battle for several more months.  Now, he is a thriving little boy.

To say we treasure every moment, is a gross understatement.  To say we are thankful doesn't even come close to the gratitude we feel.  We have an amazing family.  We have an amazing life.  We have been blessed a hundred fold.  We know this much is true!

"For today and its blessings, I owe the world an attitude of gratitude"

- author unknown

31 for 21 Blog Challenge: DAY ELEVEN: PT Strides

Josiah had physical therapy this morning.  As usual (for a Thursday), we were up at 6:30, changed, dressed, fed, and ready at 8.  D arrived at 7:59 - as prompt as usual.  She was immediately met with smiles, coos, and giggles.

Josiah has been doing well.  Despite my best intention of allowing him to utilize his new vest, I must say it fell by the wayside.  The vest still sat where I had laid it last week.  The hip helpers remained there too.  After my confession, and brief apology, D and Josiah were on to their session. 

The vest was on little man, almost immediately.  My goodness, it does make a difference!!!  Josiah enjoyed sitting today.  The support has become less and less.  It is now minimal.  At times, Josiah was sitting without any support.  Of course, D was ready to catch him when he tipped over (which inevitably happens every time).

We brought the music block out today.  It's quite tall which proved helpful.  While sitting, it forced Josiah to bring his arms up quite high to reach the top.  Then, D tried standing.  With a bit of a jackknife shape, Josiah stood hanging on to the block.  How dapper he looked sporting his vest.  He demonstrating his weight-bearing abilities like a pro.  He even maneuvered toys while doing so.

He was happy to show D how he gets into the 'all four' position and rocks (often using his head for stabilization).  I don't know if he realizes how close to crawling he actually is....

All the while, he is babbling up a storm.  Just in the past three days, he's added 'lala' and 'dada' to his verbal repertoire.  He talks in conversation.  He talks to get attention.  He talks to be funny.  (and, yes, he knows exactly the context every time).

I remain in awe at this little boy.  I dream the world for him.  Every day, he proves he can attain it :)

Thank you, God, for my piece of Heaven on earth. 

"If you can dream it, you can do it."

- Walt Disney

31 for 21 Blog Challenge: DAY TEN: Statistics

1 in 691 babies, in the U.S., are born with Down Syndrome yearly.

Reportedly, 88% of all cases arise from the mother's chromosome 21.
8% arise from the father's chromosome.
2% arise from mitotic errors after fusion.

Translocation Down Syndrome account for approximately 4-5% of all DS cases.



66-89% of individuals with Down Syndrome have some level of hearing loss.

Chances of developing pneumonia are 62x higher in people with Down Syndrome.

The risk of leukemia is 15-20x higher in individuals with DS.

Seizures occur in 3-13% of people with Down Syndrome.

Approximately 50% of children with DS have congenital heart disease.

100% of people with DS will develop signs of Alzheimer's past the age of 35.



92% of pregnancies with a prenatal diagnosis of DS are terminated.

80% of babies with Down Syndrome are born to women under the age of 35.

Mom's Age	Risk for trisomy 21 (Down syndrome)	Risk for all triomies
20	1 in 1,667	1 in 526
21	1 in 1,429	1 in 526
22	1 in 1,429	1 in 500
23	1 in 1,429	1 in 500
24	1 in 1,250	1 in 476
25	1 in 1,250	1 in 476
26	1 in 1,176	1 in 476
27	1 in 1,111	1 in 455
28	1 in 1,053	1 in 435
29	1 in 1,000	1 in 417
30	1 in 952	1 in 384
31	1 in 909	1 in 384
32	1 in 769	1 in 323
33	1 in 625	1 in 286
34	1 in 500	1 in 238
35	1 in 385	1 in 192
36	1 in 294	1 in 156
37	1 in 227	1 in 127
38	1 in 175	1 in 102
39	1 in 137	1 in 83
40	1 in 106	1 in 66
41	1 in 82	1 in 53
42	1 in 64	1 in 42
43	1 in 50	1 in 33
44	1 in 38	1 in 26
45	1 in 30	1 in 21
46	1 in 23	1 in 16
47	1 in 18	1 in 13
48	1 in 14	1 in 10
49	1 in 11	1 in 8

There are approximately 6,000 Down Syndrome diagnoses, in the U.S., each year.

There are more than 400,000 people in the U.S. living with Down Syndrome.

Odds of having a child with Down Syndrome increase based on mother's age as shown here:

Frequency of Down Syndrome
Per Maternal Age

Age (years)	Frequency of Fetuses with Down Syndrome to Normal Fetuses at 16 weeks of pregnancy	Frequency of Live Births of Babies with Down Syndrome to Normal Births
15 - 19	----	1 / 1250
20 - 24	----	1 / 1400
25 - 29	----	1 / 1100
30 - 31	----	1 / 900
32	----	1 / 750
33	1 / 420	1 / 625
34	1 / 325	1 / 500
35	1 / 250	1 / 350
36	1 / 200	1 / 275
37	1 / 150	1 / 225
38	1 / 120	1 / 175
39	1 / 100	1 / 140
40	1 / 75	1 / 100
41	1 / 60	1 / 85
42	1 / 45	1 / 65
43	1 / 35	1 / 50
44	1 / 30	1 / 40
45 and older	1 / 20	1 / 25

When we first learned about Josiah having Down Syndrome, these numbers meant more.  We took them more seriously.  The numbers, at times, frightened us.  That isn't true any more.  Josiah is just a little boy.  He's OUR little boy.  He's one of three!  Having children can be risky.  Being 'sure' about their future can be speculative.  We couldn't be happier with the family we have.  We couldn't ask for better children.  If we could go back and do it all over again.....

.....we wouldn't change a thing.

"Give me a firm place to stand, and I will move the earth."

- Archimedes

31 for 21 Blog Challenge: DAY NINE: Breastfeeding Beyond One

When I was pregnant with Jesse, I never questioned whether or not I would breastfeed him.  I, also, never dreamed that it wasn't (always) an easy chore.  Unfortunately, being a new Mom - I just didn't know how to handle a very lethargic baby Jesse.  I didn't have the proper support in place to make breastfeeding a success.  Day nine proved fatal to my breastfeeding quest.  Jesse got a bottle; it was all over.

While pregnant with James, I was determined to breastfeed.  More importantly, I was determined to succeed.  This time, I had begun talking to my friend K (a lactation specialist).  By the time James was born, K and I had a great connection.  Unlike Jesse, James just 'got it' from the first moment he tried to nurse.  He wasn't lethargic.  It wasn't a battle.  It just worked.  He began baby food on schedule and the breastfeeding decreased.  As the months went on, I worried about the day I would have to stop nursing him.  We had decided on one year.  I worried that I'd traumatize him.  Well, James independence shone through.  At ten months, he weaned himself.  He decided.  It was all over.

When we learned that Josiah had Down Syndrome, I was not less anxious to breastfeed.  Of course, I wasn't without my doubts, fears, and anxieties.  I was fortunate enough to reconnect with K, so I knew I had the best support person in my corner.  I've written previously about my experience with breastfeeding, Josiah's weight battle, etc.  With great perseverance, we have successfully breastfed our baby with Down Syndrome.  Yes, we supplemented when necessary.  Yes, we introduced baby food when suggested.  However, the whole time, I have continued to breastfeed him.  In a few days, Josiah will turn one.  One was always the 'cut-off' in my mind.  Not this time.....

I am convinced that breastfeeding Josiah (or any child with Down Syndrome) has immeasurable positive benefits. They include:

• increased protection from infection and bowel problems
• increased mouth/tongue coordination
• increased stimulation
• increased muscle tone

These are in addition to the positive effects of breastfeeding on 'normally developing' children, such as:

• breastfeeding is more nutritious
• gives immune protection
• minimizes allergies
• helps digestive system mature
• lowers risk of SIDS
• promotes eye and brain development
• is more economical

Why would I stop now???

Studies indicate that breastmilk in mother's who have been lactating for year or more, have a significantly increased fat and energy content.

In the second year, 448ml of breastmilk (approximately 15 ounces) provides:

• 29% of energy requirements
• 43% of protein requirements
• 36% of calcium requirements
• 75% of vitamin A requirements
• 76% of folate requirements
• 94% of vitamin B12 requirements, and
• 60% of vitamin C requirements

According to experts:

• children weaned before the age of 2 are at an increased risk of illness
• breastfed children between 1-3 have fewer illnesses, illnesses of shorter duration, and lower mortality rates
• some of the immune factors in breastmilk increase in concentration during the second year
• cognitive achievement (IQ scores and grades in school) and breastfeeding have shown the greatest gains in children who were breastfed the longest
• longer breastfeeding duration = improved social development
• longer breastfeeding duration eases transition to childhood

I know these benefits were always there.  My mindset about continuing is different now.  Again, it simply didn't work with Jesse.  James weaned himself at 10 months.  Josiah shows no signs of weaning and I have no intention of suggesting it.

One year down :)

 "There are three reasons for breast-feeding:

the milk is always at the right temperature;

it comes in attractive containers;

and the cat can't get it."

- Irena Chalmers

31 for 21 Blog Challenge: DAY EIGHT: Teething

This is a chart indicating a 'typical' teething schedule:

Primary teeth are also called baby teeth or deciduous teeth.

There are a total of 20 primary teeth:

     8 incisors

     4 canines

     8 molars

The begin to erupt from the gums at 6-7 months.

Eruption of baby teeth should be complete by age 3 or it is considered atypical.

According to research, children with Down Syndrome (DS) tend to demonstrate a delay in primary teeth eruption.  Not only is eruption often delayed, but teeth often follow an abnormal sequence.  In some children with DS, eruption may not begin until age 2.  Complete eruption (of all 20 primary teeth) may be delayed until age 4 or 5.

Here's another 'typical' chart for tooth eruption:

Average times of tooth eruption

	Upper teeth	Lower teeth
Primary teeth
Central incisors	8-13 months	6-10 months
Lateral incisors	8-13 months	10-16 months
Canines (cuspids)	16-23 months	16-23 months
First molars	13-19 months	13-19 months
Second molars	25-33 months	23-31 months
Permanent teeth
Central incisors	7-8 years	6-7 years
Lateral incisors	8-9 years	7-8 years
Canines (cuspids)	11-12 years	9-10 years
First premolars (bicuspids)	10-11 years	10-12 years
Second premolars (bicuspids)	10-12 years	11-12 years
First molars	6-7 years	6-7 years
Second molars	12-13 years	11-13 years
Third molars	17-21 years	17-21 years

In a person with Down Syndrome, there may be numerous dental concerns.

A lot of people with DS have smaller upper jaws.  Their tongue may protrude causing the person to 'mouth-breathe.'  Upper and lower teeth may not fit together properly.  In a person with DS, teeth are often smaller and have more irregularities.  The delay of teeth may affect a parent's ability to introduce certain foods (as the child won't be able to chew adequately).  Sometimes teeth are missing or malformed.  I found surprising that the rate of tooth decay appears to be less frequent in a person with DS, though periodontal disease is still possible.

When we had Jesse, he was the only one from whom we could gather a baseline.  As luck would have it (lol), Jesse was very quick to teeth.  He got his first tooth at 3 months old; he had all the teeth of a two year old on his FIRST birthday.  So, five years later, it is no surprise that he has lost two baby teeth, gained two adult teeth in addition to 3 of his 4 six year molars.

I would have to guess that James was "average" in his teething though I don't recall a lot of specifics.  His teething seemed slow because Jesse was "unusually" quick.

When Josiah was seen by dental in June (he was 8 months old), he hadn't developed any teeth yet.  The dentist said to us, "Don't be surprised if Josiah doesn't get any teeth until well after his first birthday."  I think Josiah was listening.  I think he abruptly decided to prove the 'expert' wrong.  (This seems to be a favorite past-time of Josiah's).

Over the summer, age 9/10 months, he gained his two lower central incisors ('normal range' 6-10 months).  Last week, age 11 months, he gained his first upper canine ('normal range' 16-23 months).  Yesterday, days shy of 1 year, he sprouted his two upper central incisors ('normal range' 8-13 months) AND one upper lateral incisor ('normal range' 8-13 months). 

I've said from the beginning (even while pregnant), Josiah is going to surprise people.  He will accomplish more than anyone can even dream!  Look out world!!!  Here comes Josiah :)

"Don't underestimate me!  I would never do that to you."

- unknown author

31 for 21 Blog Challenge: DAY SEVEN: The Creed

Today, I just want to share this great poem:



The Creed of Babies with Down Syndrome 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

- unknown author

31 for 21 Blog Challenge: DAY SIX: What's in a Nickname?

This is my blog entry from February 14, 2012.  I thought it was worth the repost:

What's in a Nickname?

During our recent hospital stay, I was having a conversation with a nurse on the medical unit where Josiah was being treated.  She was a wonderful nurse & Josiah liked her very much, as did I.  We were chuckling over Josiah's hair (it's wispy and tends to stick straight up - much like a mohawk).  She was commenting that a lot of children with Down Syndrome seem to sport a similar hairdo.  During this conversation, she admitted that the staff tends to call these kids "Doodles."  At face value, I thought 'that's kind of cute.'  Perhaps I should have left it at that.

When I returned home, I thought of that nickname and decided to look up the word "doodle."  I know it means to scribble, etc.  However, I wanted to research the word further.  Here's what I found:

http://www.thefreedictionary.com/doodle defines the noun as being "A figure, design, or scribble drawn or written absent-mindedly.  The informal noun means "fool or simpleton" from the German dudeltopf.

http://en.wikipedia.org/wiki/Doodle defines the etymology as this: "The word doodle first appeared in the early 17th century to mean a fool or simpleton."

http://www.merriam-webster.com/dictionary/doodle defines the noun as "a minor work."

Perhaps, their nickname for DS kids is innocent.  This nurse readily admitted she knew not why they called the kids 'doodles.'  Perhaps the nickname has been used for decades and the newer/younger nurses have never made the effort to determine it's meaning or origin.

I'm not usually a person that focuses on "political correctness" and the like.  I certainly don't care what nicknames people use.

However, I think this is much different.  Here we have professionals using a nickname to define our children.  If the professionals use such a nickname, doesn't it merely fuel the fires of the ignorant?  90% of all DS pregnancies (that receive an early pre-natal diagnosis) result in abortion.  I firmly believe in a woman's right to choose.  However, if some of these abortions occur due to ignorance and misperception, isn't it possible that the professionals (whether they mean to or not) are contributing to societies fear and misperception of Down Syndrome?  I think it does.

Before the general public can ever change it's negative attitude about Down Syndrome, DS kids, and the parents that have chosen to give them life, I believe that nicknames like "Doodles" need to stop being used.

It's just my thought....

"Being ignorant is not so much a shame, as being unwilling to learn."

- Benjamin Franklin