31 for 21 Blog Challenge: DAY ONE: DS and Breast Cancer

October 1st marks the beginning of National Down Syndrome Awareness Month.  It is also Breast Cancer Awareness Month (worldwide).  Therefore, I thought it fitting that I mention a link between the two that I only just learned about this morning.

A study was conducted in Norway and it's results published in 2009.  Here is a synopsis.

Researchers looked into the possibility that hCG (a prevalent pregnancy hormone) provided protection against breast cancer for the child-bearing mother.  Compared to 'normal' pregnancies, 'Down Syndrome pregnancies' yield higher-than-normal hCG levels from late 1st trimester to the middle of the 2nd trimester.  The study hypothesized that women who gave birth to children with Down Syndrome (DS) might have a lower risk of breast cancer than women who gave birth to children without DS.

The study examined all mothers of live-born children in Norway and Sweden from 1967-1973 through 2004.  The study period yielded the following results:

54,063 women developed breast cancer.
5,330 children were born with DS.
139 breast cancer cases were diagnosed in the mothers of DS children.

Adjustments were made for relative risks, risk factors, etc.

In the final analysis, results indicated that mothers of children with DS were at a 23% increased risk of developing breast cancer.  The increased risk was limited, however, to women who had a child with DS after age 30.  It also seemed to be confined to women whose cancer was diagnosed before the age of 50.

The original hypothesis that exposure to elevated levels of hCG may provide maternal protection against breast cancer was NOT supported.

An interesting addition....

In women with Down Syndrome (not the mothers), reported studies suggest that breast cancer is nearly 10x LESS frequent than in the general population.

“The more I read, the more I acquire, the more certain I am that I know nothing.”

- Voltaire

Our First Buddy Walk and the 31 for 21 Blog Challenge

Today was our first Buddy Walk.  It was a beautiful location, in a small park, overlooking the Atlantic ocean.  Unfortunately, it was in the 50's and rainy.  The weather could definitely have been nicer.  However, the spirit of the walk's purpose was undeniable. Tents were set up to keep tables (and people) protected from the rain.  Posters of individuals (Josiah included) were carefully displayed around the park.  People were energetic, happy, and enjoying themselves despite Mother Nature.  Even Elmo and a fire truck showed up to keep the young ones entertained.  The rain stopped no-one from walking. 

Eventually, the rain gave way to sun.  The children played.  The adults socialized.  The rain returned.  We decided to call it a day.  We had stayed for 3 hours.  We were wet, tired, and getting cold.  The kids felt the same way we did.  We packed up and headed home.  We are grateful for the Buddy Walk, it's hosts, it's participants, and to all whom it's meant to benefit.  Now, we will look forward to next year and hope that the weather cooperates with us.

Tomorrow is Monday.  The big boys return to school; one has a field trip.  EI appointments resume.  All in all, it is shaping up to be a relatively mellow week.  We have no 'extra' stuff going on.  Perhaps, I'll be able to catch up on some much needed chores and cleaning.

Of greater importance, tomorrow is October 1st.  It is the first day of October.  October is DOWN SYNDROME AWARENESS MONTH.  So, I am joining the 31 for 21 blog challenge.  That means every day, during the month of October, I shall make an entry in this blog.  I will do my best to keep them interesting and informative.

Until tomorrow my friends :)

Thankful For a Rainy Day

We have survived 5 days of school, 4 colds, 4 EI visits, 3 trips to the pediatrician, 3 flu shots, 2 on 'cough medicine' (ie honey), 1 fever, 1 ear infection, 1 preschool assessment, and 1 antibiotic.  This is just since Sunday!  Good Grief!  We need this weekend to recover.

We had planned an outing for today, but given the illnesses of the week (mixed with today's rain) - we are staying home today.  I need to get caught up on some much needed cleaning.  Tomorrow is our first Buddy Walk - I am very excited!  I'm just hoping the rain cooperates with us.

Monday, I cancelled Josiah's EI visit with K.  I think that might be the first appointment I ever cancelled.  That was the day we took Josiah to the MD due to a fever.  On Tuesday, we were back at the pediatrician's office for scheduled flu shots for all three boys.  They were troopers!

Wednesday, Josiah met with C (occupational therapy).  He did a great job, as usual.  Thursday, he met with D (physical therapy).  This wasn't an 'all-star' week (like last week), but he did very well none-the-less.  Josiah continues to prove increasing strength, stamina, and determination.  He is sitting (with support), and can stand (with even more support).  He squirms all over the place when on the floor - I suspect crawling isn't too far away.

It's been a busy, yet non-exciting, week.  It was exhausting, actually lol.

Stealing moments for myself seem difficult, at best.  Even now as I write, I struggle to get the thoughts in my brain transformed into words on paper.  The 2 year old stands at the top of the stairs, steadfastly, screaming "MOMMY!"  How 'Mommy' needs a break! 

Sometimes it's best to give in.  I shall cut this short and attend to my family.  I will attempt to find some quiet time later to share more with you.

Happy rainy Saturday everyone!

Failure to Thrive; the Despised Phrase

Josiah was born weighing a healthy 7 lbs - ironically, he weighed more than either of his brothers at birth.  However, it didn't take long to see that he simply wasn't gaining weight as readily as his peers.  For those of you who have read the blog from the beginning, you know this has been a sensitive issue for me (given that Josiah was/is a breastfed baby).  We have persevered.  Josiah has done the same.  His providers have been patient (I was never willing to stop breastfeeding, only willing to supplement). 

'Failure to Thrive' has always been that phrase we didn't want to hear.  We didn't want Josiah diagnosed with "failure to thrive."  Though it's just a concept, I guess the name sounds so horrific to Carl and I.  Despite providers not using it, it still remained.  It was the (usually) unspoken truth.  I say usually, because hidden on a medical summary somewhere are the words 'history of failure to thrive.'  Carl and I have never considered Josiah as failing to thrive.  So, I set out to check definitions.

Johns Hopkins refers to failure to thrive in this way: "Children are diagnosed with failure to thrive when their weight or rate of weight gain is significantly below that of other children of similar age and gender. Infants or children that fail to thrive seem to be dramatically smaller or shorter than other children the same age."  It goes on to say that failure to thrive can be the result of physical problems (such as Down Syndrome) or environmental problems (such as abuse/neglect).

Ok, fair.  I can agree that Josiah does not match the weight of other children his age.  I guess it's the phrase that is despised.  It feels like it implies something sinister.  Perhaps, in some cases it is caused by something sinister. 

I've never brought myself to write about this as it's so personal for us.  However, yesterday gave me good cause to mention it. 

Josiah came down with a fever on Sunday.  101.3.  It was late in the afternoon.  He was crying non-stop, difficult to console.  I finally gave him a small dose of Tylenol and called the pediatrician's office.  An RN was on the phone within a few minutes.  We agreed, Josiah could wait until morning to be seen.

I knew the pediatrician's office opened at 8:30, so I was up, showered, and dressed by 8.  I was watching the clock with the intention of calling them at 8:35.  Well, as usual, they beat me to the punch.  At 8:15, our phone rang.  Sure enough!  It was the pediatrician's office calling to see how Josiah was doing.  I explained.  He fussed off and on during the night.  His fever remained when he awoke at 4am.  We were given a 9:45am appointment.

At 9am, we were out the door.  The big boys were in school allowing Carl & I to take Josiah in alone.  Once inside the room, they asked what he currently weighs.  Well, you know me - I stopped weighing him at home because I was becoming a bit obsessive about the weight issues lol.  So, I gently said "Can we weigh him here?"  Minutes later, Josiah was undressed and laying on the scale.  I knew that he weighed 15 lbs 3oz on Aug 16th.  I watched the scale teeter - I was simply waiting for the end result.  OMG!  17lbs 2oz.  He did it!  He gained 2 lbs in 5 weeks!  I almost started dancing in the hallway.

They examined Josiah.  Luckily, nothing serious.  No ear infections.  No respiratory issues.  It boils down to a cold/viral thing.  Thank goodness!  As we were leaving, we stopped in the hallway.  The MD passes by smiling.  He tells the nurse, "my two failure to thrive kids are both thriving." 

"My two failure to thrive kids are both thriving." 

I'll take it!

Falling Back into the Swing of Things

Now that the kids are getting older, I realize how busy life can get in September. 

We celebrated a 'first' anniversary - remembering the life of my oldest brother.  He made choices we didn't understand.  In September of 2011 he died, on the streets, at the age of 50.  Although I don't miss the nonsense, I do miss him.  I miss my brother.

Our oldest began Kindergarten.  Here, the children attend full-days.  He takes the bus to and from school every day.  He leaves at 7:40am and arrives home at 3:10pm.  He is doing well.  He is already recognizing more letters and is proudly demonstrating math skills he has learned.

Our middle boy began early preschool.  I wish the transition to school had been as easy on him.  I don't know if it's been harder on him, or us (watching him struggle).  We're in touch with the school, the administration, and the teachers.  He's already turned a corner.  We're waiting patiently to see if things improve further; we hope they do.  (Early Intervention) EI continues to work with him on his speech.  One recent, and major, accomplishment has been his willingness to say goodbye to his binky (except at night).  This, in itself, has led to an improvement in speech.  We're hoping for major strides in the next three months because in December he will age-out of EI.

Josiah continues to amaze us!  We finally had his 'six' month pics taken.  He was 10 months at the time, but who's counting.

Josiah continues to receive two EI visits per week.  One from K (his child care specialist); the other from D (his physical specialist).  Every other week, C arrives for OT (occupational therapy).  In the coming months, he will begin receiving speech therapy.  The progress he is making is astonishing (pics below).

Our first Buddy Walk is next week.  We are tremendously excited about it.  I'll be sure to tell you all about it.  We can't wait!!!!

Next month is sure to be a great month.  October!!!!  It's Down Syndrome Awareness Month.  Josiah will also celebrate his first birthday.  Amazing stuff!!!

Finally, for those of you who enjoy pics.  Here are some recent ones (mostly taken during Josiah's EI sessions):

Here, he demonstrates his ability to proudly hold his head high.  His arm extension is wonderful!  Belly time has become fun for Josiah.  Catching him on his belly is actually rare these days as he loves to roll now.  Gates have become his best friend (as they constantly save him from getting into forbidden areas).  It's no longer uncommon for us to turn our back, only to find him on the other side of the room mere moments later.

The task of sitting is an obstacle anxious to be overcome.  Josiah is starting to understand its importance....if only the balance would cooperate.  With a toy carefully propped, he does quite well.  It's only a matter of time before he's sitting independently :)

"Look, Mom!  Only one hand!"  It's a good thing that K is holding on.  Josiah doesn't realize that his ability to fall over is greater than his ability to sit lol :)

This isn't the best pic of Josiah's face but it clearly shows that he is now tolerating weight-bearing on his legs/feet.  This is a huge step!!!  It's very exciting.

Josiah is learning what it feels like to bear weight on his knees.  This kid is such a trooper.  He is manhandled frequently and tolerates it like a champ :)

This was taken yesterday as our family enjoyed a much needed-day-to-ourselves outing.  Fun was had by all.

Updates coming soon: Weight and MD stuff.....

October's goal: Daily blogging..... :)

Summer's Last Hoorah!

As summer winds down quickly, Carl and I prepare for the changes in our household dynamics.  We find ourselves on a roller coaster of emotion.  "Yay!  They're going to be out of the house" quickly changes to "Awww....our little guys!  We're going to miss them."

Jesse starts Kindergarten tomorrow and will be whisked off every day, via bus, and will begin a lifetime of learning.  He will be gone from approximately 7:45am until 3pm Monday through Friday. 

James starts early preschool this week.  He will be dropped off for a six hour day, five days per week.

How strange it will be. 

Josiah will be the only child home during the day.  What a quiet wonderment that will be!

James's EI appointments have all been rescheduled.  So, Carl and I declared this the last hoorah weekend.

Friday, we spent the day at home - which this Mama desperately needed!!!!

On Saturday, we spent the day yard saling - bargain hunting - and going out to dinner with the boys.

Sunday, we found ourselves (beginning) Christmas shopping at a nearby flea market, one quick yard sale, and a late night run to Friendly's.  Yes, that Jim Dandy was totally worth it!

Today, we're hitting a couple of store sales.  Later, the boys will get their baths.  Backpacks will be loaded for the first day of school.  We will start our new "school night schedule."  UGH!  I can't believe a big yellow bus will take our little boy off to Kindergarten in the morning.

In the meanwhile, it's almost 9am and Josiah is still asleep.  I'm hoping he's ok.  He's been sneezing the last few days.  His left eye seemed a bit teary yesterday.  His nose seemed a bit boogery yesterday.  I hope he's not getting sick.  Keeping my fingers crossed.....  I've checked on his twice & he is sleeping well.  I will let him (hopefully) sleep this off.

Happy Labor Day, my friends :)

Every Week Breeds Success

Josiah is blowing me away with all that he is accomplishing!

On Thursday, D (physical therapist) came to work with J.  As usual, she was met with smiles and babble.  He engaged quickly and easily.  For the next 75 minutes, he simply astounded us.  Side-sitting, which always brings out tears, resentment, and frustration, was embraced!  Josiah tolerated side-sitting (both sides) without complaint, reservation, or crankiness lol.  One mirror, appropriately placed, provided the very entertainment he needed.  "Where's the cute boy?"  "Where's the handsome boy?"  "Hi, Me!!!" is all Josiah needed to hear.  He not only looked at himself in the mirror, but he kept reaching out to the cutie in the mirror.  At times, D & I merely motioned to one another - we dared not jinx the moment.

Belly time is gradually becoming more difficult.  Josiah has mastered rolling over, so keeping him on his belly is a difficult task.  Now, while on his belly, D is working on keeping his knees pulled up under his belly and rocking him onto his heels.  Josiah has been practicing pulling his knees up under him.  However, he doesn't like to be placed there and rocked.  He complains!  I know he'll get used to it soon - as he has all other 'new' movements.  Then he'll master it :)  It's one step closer to crawling.

Despite his left arm being slightly weaker than the right, Josiah is reaching more with his left arm now.  D and C (occupational therapist) have noticed the improvement.

What, I think, excited me the most on Thursday is this: D sat Josiah on his bum, in between her legs, facing away from her.  With very little support, Josiah was able to sit for an extended time.  Mama was thrilled, to say the least!!!  Is sitting in this child's NEAR future?  He is an amazing little man! 

Whilst sitting, and during belly time, Josiah is 'weight bearing' with his arms VERY well now.  This, too, is a marked improvement.  He is definitely getting stronger.  He is working hard and it is paying off. 

One of my fears early on was food (aside from the breastfeeding struggle).  Due to Josiah's high palette, I was worried about the food issue.  It is very common for children with Down Syndrome to have issues around eating.  One big issue tends to be food getting stuck in the high palette.  Another HUGE issue is the tendency for the tongue to protrude out of their mouth.  Well, Josiah's tongue doesn't protrude - we are so fortunate for that.  And, despite the high palette, Josiah has transitioned to eating (baby food) like a trooper.  He likes almost everything (not tolerating different foods is another common problem).  He keeps his mouth fully closed while eating (again, the tongue poses no problem).  Finally, he's eating fruits, veggies, and meats.  I couldn't be more delighted.

Every week proves that Josiah is not a child to be underestimated.  Every week breeds improvement and success!

I wish everyone could understand the joys of raising a child like Josiah.  Every accomplishment is met with amazement.  Every smile is pure.  Every laugh, sincere.  Every moment, a joy.  Every snuggle, real.  Imagine how wonderful the world would be if only more people could share in that miracle....