October-Down Syndrome Awareness (Part 3)

Dear Sawyer,

You're home!!!

This is your first Christmas!!!  

We were so happy to get you home.  Mom and Dad's bedroom was your bedroom.  We had your oxygen machine (then later, the GI-NORMAS oxygen tank) and your feeding/meds in our room.  You had to have meds every three hours around the clock, along with tube feedings.  Dad and I took turns feeding/medicating you. 

I was home with you and Judson most days while Dad went to work.  It wasn't like it is now, with Dad working from home.  Judson was very helpful.  He helped me pump milk. (Oh so helpful was that)   You see, while you could breast feed/bottle feed, the docs said NO.  With the heart defect, your body needed extra calories.  You would tire out before getting enough calories if you ate by mouth.  So we fortified breast milk with baby formula and fed you every three hours through that tube running from your nose to your tummy.  It was funny, right before it was time to feed, I'd always hear you smacking your lips together.  I loved that sound.

Judson was also very helpful with the man who delivered the oxygen to the house.  At first he was scared.  Then, he started getting excited when Oxygen Man would come.  He was two at the time and he could never remember his name.  So he was just Oxygen Man. Oxygen Man let J help which made J feel very special. Let me tell you, those big old oxygen tanks were very hard to get in and out of the bedroom/house.  They were as tall as I am.  They were one of the things that kept your body working and healing so that you could eventually have surgery. 

While we were scared at first, as time went by, we seemed to get in a routine.  I even carried you (along with your mini-oxygen tank) to the mall a few times.  You've always liked going places.  You have always been very alert.  Even the doctors commented on how very alert you were as a tiny little baby.  The only thing holding you back was that nasty PAH and your heart defect. 

By the way, you used to LOVE listening to Josh Groban.  At the hospital, I brought a J.G. cd for the nurses to play for you.  They loved it because it wasn't 'kids songs'(Which is what most parents brought) and it seemed to settle you down.  At home, I'd try different cds but ALWAYS you wanted Josh Groban.  It's funny, when Judson was little and colicky he liked for me to read to him.  Didn't matter, as long as I read.  He preferred chapter books.  The Hobbit comes to mind. With you, it was music.  You loved music.  Mostly stuff like J.G.  Now that you and Judson are getting bigger,  he still loves to read and you still love music. 

Anyway, back to the story.  Dad and I took you to your cardiologist, Dr. S, every month.  We'd both go, along with Judson.  Every time, your PAH seemed to be a bit better.  After a while, we began to realize the doctors at the hospital were not right.  Instead of getting progressively worse, you were getting progressively better!!!   We began to have hope. 

Next time, I'll tell you about your surgery.....

October-Down Syndrome Awareness (Part 2)

Dear Sawyer,

Where was I?   Yes. I remember now.

It was time for you to come into this big amazing world.  We called all the right folks and headed to the hospital.  Actually, Dad headed home while I waited at the hospital.  This was morning and because I had eaten 1/2 of an apple before we went to the doctor, they made me wait til about 6pm before they'd start the c-section.  So I sat around the hospital while Dad got your brother situated with friends until Nana and Pop could get here.  Yes, I know.  MEGA-BORING!

Finally, they started the c-section. It took a bit of tugging to get you out.  Once you came out, you were red and screaming at the top of your lungs.  (our first indicator that you had inherited the STRICKLIN-temper)
You were M-A-D.   You had a white blond fuzz on top of your head.

Here you are the day after you were born:

I cannot remember the exact measurements but I think you weighed a bit over 7 pounds and stretched out to about 19 inches.

Since they knew you had a heart defect, they put you in the NICU immediately after birth.  They kept you in the NICU at the birth hospital until they could move you to CHOA.  At that point, they were not sure of the diagnosis.  They would not let me feed you so I just pumped breast milk and froze it.  They didn't want you to eat in case they needed to do heart surgery.

At some point a doc from CHOA came and did an ECHO and other tests and determined you had a heart defect that needed medicine sent from a central line directly into your heart. 

After 5 or 6 days they transferred you to CHOA where they put you in CICU.  You stayed in CICU for about 4 weeks.  During that time, they finally diagnosed you with a different heart defect.  It was a much simpler defect to fix and didn't require the central line.  That was the good news.   The bad news was you had PAH. (Pulmonary Arterial Hypertension) and they couldn't operate on your heart because of this. About 1 in a million babies have this.  There is no absolute cure.  Most kids live with it, until they don't.  They didn't give us much hope you'd live more than 1 year.  In fact, after telling us this many of the docs quit coming to see you and would not talk to us.

That's okay though.  We had 2 very good cardiologists who took very good care of you.  We also met a pulmonologist.  We didn't like him very much.  He just told us that we could decide for ourselves what we wanted to do as far as care and he'd do it.  He suggested we go to an out of state hospital as they were the best at dealing with PAH.  We said no.  So we researched even more and asked lots more of questions.  Then we decided to put you on a experimental drug to help with the PAH.  (along with some others that the cardiology team added.)

After all that was settled, medical supplies were delivered, I got certified in baby cpr, and I learned to insert a NG-tube thru your nose, into your tummy, THEN we were released to go home. 

I won't bore you, Sawyer, with the details of paperwork and genetic testing.  Let's just say, we had a reputation at that hospital.  It wasn't bad, really.  I think they were just not used to parents who used the internet as much as we did.  Nor were they used to answering the types of questions we asked.  Let me just say, we could read those ECHOs pretty good for amateurs.

That's all for now.   Next time, I'll tell you about Oxygen Man and other fun stuff!

October-Down Syndrome Awareness (Part 1)

It's that time again!!!   Down Syndrome Awareness Month!

So, let's start.  Shall we?

Dear Sawyer,

Let me tell you about your early days.  WOW!   That's all I can say.  It was overwhelming.  Let's start with our first u/s.  You see, docs always want to do an u/s to make sure things are going well and if possible, they might even determine the gender of the baby.  Since I was over 35 and had problems with your brother's pregnancy, the doc decided to send me for a Level II u/s.  (big words for "they sent me to a specialist")  After that first u/s, we knew we were in for a scary ride.  The doctor told us he noticed a possible heart defect and wanted us to come back for yet another u/s.  With each new u/s, we came home with more information,  possible new diagnosis and more markers for  Down syndrome.  They even wanted to do a special test to determine if you had Down syndrome.  Ummm...you may not know this but I don't particularly like needles and most especially don't want one stuck in my tummy.  (which is what their test would have done)  We told them no thank you.  It was not necessary as it would not change the direction we were going.

Let me just say what an amazing man your Dad is and was during this time.  Even when Mom was very emotional with hormones and such, he managed to ask all the right questions.  The most important to me was with each doctor we met, during this time and after you were born, he would ask their opinions on Down syndrome.   You see, we didn't want just any doctor working on you.  So if they had negative opinions on Ds, we made sure we didn't see that doc again.  (believe it or not, there are still many doctors who have dated and just plain WRONG information when it comes to Down syndrome)

So we went for u/s monthly, then bi-weekly and then weekly.  With each possible diagnosis, we'd come home and search the internet for information.  We had a love/hate relationship with the internet.  We found lots of information and were able to ask lots of questions of the doctors.  Sometimes, though that information was very scary.  We researched best hospitals, in case we needed them.  We knew more about heart defects than your average person, that's for sure.  We had wonderful friends and neighbors who put us in touch with the right agencies with information on Down syndrome and services we could expect to get.  We were as prepared as we could be for the day you were born.

Then one day, the docs decided it was your time to see the outside world.  We were ready, or so we thought.

Pictoral Update

Are you familiar with Michael Jordan?  His basketball uniform number was 23.  

Turner's soccer uniform number is 23.  I think he channels Michael Jordan.

Her favorite outfit?   A skirt!  

THIS is what you do when Dad says you can't ride a bike with a skirt on.

He is not the most athletically talented kid you'll meet.

BUT

If he wants something, he'll stick with it until he masters it.

Nothing better than having Dad push us around the driveway on the scooter.

Only Dad can do it.  

I'm good with that.

Wordless Wednesday

Busy-Ness

In my quest to keep my blog more current, I thought I'd post some pics of what the boys have been doing this week.  (Yes Ansley was busy w/gymnastics.  I just can't take pics of her as I'm not allowed in the gym)

First Up, Sawyer.  He received his Bobcat badge at his scout meeting.  Apparently, they hold the recipient upside down while painting his face.  Since we didn't know it was going to happen (And therefore carried no camera), there was no picture of the actual event.  I did take pics once he got home.

He is holding up all his awards he achieved.  There are so many belt loops, I'm not sure his waist is big enough to wear them all at the same time.  We may have to rotate them.

Saturday was Turner's first soccer game.  He did very well.  He truly enjoyed it and seemed to understand the basics.  What is funny about my 3 boys is NONE of them have a competitive bone in their body.  That's neither good nor bad.  Just a statement.  (I cannot make the same statement about their sister and that's all I'm going to say on the subject.)

 

 The look of concentration.  (and they said it would never happen!)

Judson went with the scouts to the Braves game today.  Let's just say, even with all the scouts and their rally caps, there was just not enough mojo to help the Braves and their very weak bullpen.  But they had a good time anyway.  They got to walk around the field before the game and run bases after the game.  Lots of good memories!

We went out to eat after they got back from the game. 

Where Have I Been?

I know, I know....SLACKER!!!

I've been meaning to write but geez, I don't seem to have the time.

Let's see.  Where to begin?  What have we been doing?  Here's a list of things I've been thinking about today...

1.  Turner is loving soccer!   Twice a week practice plus games on Saturday.

2.  I'm trying to track down where Ansley's Girl Scout application went. (along with the already paid fees)
3.  Judson and Ansley have gymnastics once a week.
4.  Sawyer has OT once a week
5.  Sawyer has Speech therapy once a week.  (Do NOT get me started on that)
6.  Working on getting Sawyer in Music Therapy.
7.  Home schooling 4.  Some with more success than others on any given day.
8.  Various doctor/vet/??? visits.
9.   Trying to answer Doogie Howser's medical questions.  Ranging from:  Is meningitis lethal?  to Did you have Rubella when you were pregnant with Sawyer?  He has some signs of Rubella syndrome.
10.   Boy scouts are going well.  Popcorn sales, camping, meetings, knots...(BTW, Boy Scouts are Randy's job)

So, I have been slacking on the blogging front but I'm trying to get caught up.  Really I am. 

NINE Years Ago.....

I met the most amazing little guy.  He was destined to change my life forever.  Time certainly has flown.  The first 3 months were a blur.  He did not sleep more than 2 contiguous hours at any time.  He would NOT take a bottle.  It made for a VERY tired momma.  At times it seemed like those days were 36 hours in length.  Yet, looking back the years seemed to have flown by.  How can that be? He is in his last single digit year.  He's an amazing young man.  So happy to get to spend these last 9 years getting to know him.  I hope the next 9 will be equally joyful and enlightening.

His First Christmas!

Today

Celebrating with his buddies Parker and Allie

How We Cope

OK...I've made it no secret to those who know me, how energetic Turner is.  We've have no official diagnosis but I have no doubt if we did, we'd have a boy with some sort of clinical diagnosis.  ADHD????  High energy, kinesthetic learner????? 

We are not going to have him tested now.  Maybe never.  Maybe someday.  It is/will be our decision and we will make it when we are ready.

For now, this is how we cope.
1.  Limit sugar. 
2.  Lots of outdoor play and running around.
3.  Lots of Wii activities, so he's moving and coordinating his movements.
4.  Soccer.  Lots of running. 
5.  Riding his bike
In other words....lots and lots of physical activity
and last but not least.....

What's that you ask?   Why it's a tube sock filled with rice, of course!   My aunt makes them so that you can microwave it and have yourself a portable heating pad.  That is NOT what we do with it though.  On good days, we can put it in Turner's lap and it helps him to sit still and concentrate on his work.   On bad days, we drape it over his shoulders for a little extra sensory feedback.  Today was a bad day.

That's it!!!

Men in Uniform

Makes me *SMILE*

(ps.  buy lots of popcorn if they ring your doorbell)

Just as an aside:

I had to renew my driver's license today.

The next time I have to renew them, the boy on the right in the above pics will be heading to college.

I CAN'T TAKE IT!!!!

Loving It!!!!

Can I just say, I am LOVING having all 4 kids at home this year!

L_O_V_I_N_G   I_T!!!!!

(Don't have as much time for blogging though)

He is doing well academically. 
Almost finished with his first Dick and Jane book.
Learning to write!!!!
Counting (as long as you don't need the #6)
Adding (again, don't worry too much about #6)

He misses school (at least the social apsect)

I think he'll be fine once scouting starts.

He also starts speech next week which will give him his school-time.

The other three are doing well.  

Judson is working a little college level chem

While mightily struggling with 3rd grade english.

Funny how that works.

Ansley is doing well in math and reading.

She's learning multiplication

And reading above grade level.  

Turner and his little ADHD self is working on writing.

He has VERY weak fine motor skills in his hands

So it is a struggle, especially

when he gets to squirming.

Lest any of you anti-home schooling folks think my kids are not being socialized.

(because we all know that is what happens....right?)

I have 3 in scouts, 2 in gymnastics, 1 in soccer

Not to mention chess and Saturday School (which is a winter activity)

We had to give up karate for a while as we ran out of time.

The Great Prisoner Exchange (AKA, The Sleepover)

We met Alex and Makayla through martial arts.  They are home schooled and about Judson's age.  Alex and Judson struck up a friendship, as did Ansley and Makayla.  The relationships have been going strong for almost 2  years.  I have to say, it makes it nice that I like to talk with their Mom too.  It's a Win-Win situation.

This weekend we decided to do a 'double sleepover'.  Meaning,  Alex came to our house and Ansley went to Makayla's house and spent the night.

I have no pictures of the girls sleepover.  The report is:  They were very quiet, had tea parties,  worked on art projects and watched movies til almost 2am.   In other words, SUCCESS!

I think we also had success here at Camp Stricklin.  The boys played chess (LOTS of chess), played computer games  (LOTS of computer games),  ate (LOTS of eating), played on the slip and slide,  rode bikes, watched tv, rough housed, and had a rowdy time.  Again, I'd call it a SUCCESS!

Here are the pictures I took of the boys.

Randy with all his little helpers!

Today....we recover.

A Few of My Favorite Things

I apologize for the shaking filming.

Turn the volume up on Sawyer's video.

Introducing......

His Highness Captain Underpants and Cinderella

(be thankful I managed to get him to wear underpants, he was really wanting to go commando today)

In case you are wondering,  he is wearing glass slippers.

Remember????

OK....remember THIS STORY?

Finally tonight, we got together with DANIEL.

Oh...Sawyer was so excited!!!

Before we (just he and I) left, he told Ansley

"Now stay out of trouble"

They were excited to see each other.

Daniel and Miss Kris, who taught both Daniel and Sawyer in pre-K

These 2 truly do have a connection!

I REFUSE!!!

Yep.

That's right!

That's what SHE said.

She was NOT going to do her homework.

Her Dad had told her what would happen if she did that a  2nd time.

Apparently, her memory is faulty.

Less than a week later, she said those same words again.

Dad didn't take kindly to it.

So he told her, if she was not going to get any book learning, she'd need to know how to work with her hands.

What better way to do that, than to spend a few hours outside WEEDING.

This is what happened after a couple of hours.

Amazingly, today when asked if she'd rather learn from books or learn to work with her hands

She decided she'd rather learn from books.

Just having fun!

Girls Day

So Randy and Judson spent all day yesterday fishing.

It's only fair, Ansley and I get to do something today.

Correct????

First....The Nails

Then to ART class with BFF Makayla.

Beginning

Middle

The End

Personally, I think we got the best deal.

The guys spent the WHOLE day in a boat,

On the WATER,

IN.THE.HEAT

We were in the a/c all day long.

Sooooo much fun we are planning another art adventure.

Next time, Moms are joining in on the fun!

Swimming

OK.  It's SOOOO hot outside (How Hot Is It?).

  It's so hot, the only thing you can do outside is swim.

And that's all we've been doing outside.

Here's another video of Sawyer's swim lesson today.

What you'll notice is that he comes up for air,

then goes back down and swims some more.

That's a very good accomplishment.

Two Trips

Randy took 2 kids and headed south last week to visit with his folks. 

I took 2 kids and headed north to visit with my Dad.  

Each of us had a camera.  

Only 1 of us took pictures. 

The View

Main Mode of Transportation

Picking Blackberries

Trying blackberries.

Everyone had a great time!!! 

Except for the whole blackberry experience.

We are all very tired.

Demolition Derby 2011

Sawyer's #8

Judson is #7

Sawyer's won this clash!

Judson came in 3rd

Sawyer actually came in 4th.  (alas 4th doesn't have a trophy)

We're Getting There

Making LOTS of progress in swimming!!!