The Toland Family

More BIG Stuff!

2011-04-28T20:22:00.004-05:00

It's THAT kind of night! :) ...she helped pull it out herself (with an Episcopal Cheer & a little dental floss)
Happy THURSDAY!!

Big Stuff...

2011-04-13T06:14:00.000-05:00

2011-02-14T17:53:00.003-06:00

2011-02-11T08:54:00.002-06:00

...officially...crazy! It's 8:30am & THIS is what we've already said 'yes' to!...no more snow daze!!, please!...but LOVE our little Valentines!!!

she LOVES it...

2011-02-05T12:58:00.002-06:00

hated it!!

2011-02-05T10:31:00.002-06:00

...huge

alligator

tears!!

a little family time

2011-02-05T09:43:00.001-06:00

Avascular Necrosis

2011-02-02T14:51:00.003-06:00

We got pretty GOOD NEWS today! :) THANK YOU for praying with us... Drs were pleased w/ several things, worried by some, but overall...come back in 3mos/keep wearing the braces/no jumping, etc, pray for good growth...and NO surgery yet!!

The long version...It is there...and it is troublesome that it is developing on both hips, still possibly congenital, and they are unsure how much tissue is damaged/getting enough bloodflow...and why, and rare to have it at this young age.
It is positive that right now Leighton has great range of motion of those areas, does not appear in any pain, or inflammation/tightness & 'ball' does not 'pop' out of the socket.
They felt an MRI might 'academically' give us more info, but in terms of care, not change what they do next whether he has the diagnosis, or not...and having to put him under anesthesia yet another time is not fun all around.
We are thankful he sees a PT everyday at therapy, who can help us monitor the limping, or holding movement inbetween time...and are thankful for our new, excellent friend, bone development specialist who again, is right here in our LR backyard! Someone above is looking out for all...
As we were leaving, they even said Leighton could "practice" alongside all his sister's gymnastics moves in the playroom...he prefers the splits & is rather good at them! :) ...OH that little monkey...we love him something fierce!!

2011-02-01T22:57:00.004-06:00

...Prayers for our sweet little guy tomorrow (& his parents!)...we finally head to the Orthopedic Surgeon to get some answers and a plan for his hip problems
...We're a little anxious, but SO glad to be going!! Its SO hard to keep him still...not running or jumping or climbing on things!

"Be anxious about nothing, but in everything, by prayer and supplication with thanksgiving, let your requests be made known to God."

Philippians 4:6

New Year's Resolutions!!

2011-01-22T06:41:00.006-06:00

We feel sort of like we're moving at 'light speed' these past few weeks!...Holiday Favorites will come later...but here's a couple of what we've been up to...

Happy January!!!!

(P.S...little boy had ear surgery on the snow day...weather & all...so, he didnt make it to the snow yet this season...anyone who wants more snow can 'pray' for another day so he can have his photo opp...)

All Dressed Up with NO WHERE to GO, Halloween Sick Pic

2010-11-01T11:41:00.000-05:00

So much to catch up on still...WOW, where DID October go???? This mommy is feeling it today...maybe all will fall into line & I can type about it later :)

BOO!

2010-10-30T21:30:00.002-05:00

...These "Jokers" are busy & rambunctious...lots of October fun to share...will be back later!

ALL our LOVE!!

2010-10-21T09:49:00.002-05:00

It's the last week of Down Syndrome Awareness Month...I'm not sure we have many 'wise' thoughts or perspectives right now...feels like we are 'living' it more than reflecting...what we DO know for sure, is God has righly blessed us, but also intrusted us with a lot on this journey...

Our Favorite Girl

2010-09-27T00:39:00.000-05:00

...There was a little girl, who had a little curl

right in the middle of her forehead...

and when she was good, she was very, very good

but when she was bad...she was HORRID!

Kindergarden days are FULL! Blair is doing well keeping up with the early mornings, loves a fun playdate afterschool, ballet, Indian Princess with daddy, "real" church choir, anything pretending to be a cheerleader, and at bedtime...is OUT from exhaustion!

...We had our school conference this week, and her teacher said they are 'smitten' with our girl! Blair is helpful in class to take care of those more quiet/not paying attention, and even (laugh) "offered" to be her teacher's 'assistant' if they needed her, because SHE could make it down the hall to the office and back like they asked...oh what a girl :) They are each matched with a senior pal that comes to chapel with them, or they make cards/art projects for...They are starting her in an accellerated reading program this coming week too.

She LOVES her brother & is so very proud of him...the sibling rivalry is erupting though, and at bedtime, book time, or any share-attention-time, she is quick to need mommy or daddy to 'baby her' to be 'little like Leighton'...

Her alter-ego is in a phase of bad temper tantrums that look like classic strong-willed child meets special needs sibling...our pediatrician & another great parenting specialist have directed us well, and those moments are becoming farther apart...

We love our happy, high-energy little girl who loves to laugh and play!

End of Summer

2010-09-26T11:55:00.001-05:00

We rounded the corner at the grocery store about 1 month ago, and stopped short...WOW, what a beautiful reminder of Nana's kitchen table, summertime meals, and happy times in the backyard...

(sorry we forgot to upload these...I wonder what else is saved as a 'draft'...)

2010-09-23T23:35:00.006-05:00

Oh yes, our little Dennis-the-Menace has learned to stand on the coffee table...magic wand and all! ...he 'waits' for us to turn our heads for 1 second, climbs up & yells "HI" top of his lungs til we run...such 'good' toddler behavior we'd been praying for :/

...there's a 'gleam in his eye too...

We're way behind on the pictures, (he has LOTS of new tricks!) and we'll try to catch up this weekend..."Sister" is happy & good too; work extra busy, and we're all ready for cooler weather!

2010-09-04T10:41:00.003-05:00

Friends, we are STILL praising God for our GREAT APPT!
Dr Bower hugged me!
:) He could NOT BELIEVE how opposite the test was...no hearing aids for sure!! They improvised the test situation a bit (less people/distraction toys) and he attended way beyond his normal maturity level
...there was some scar tissue in his R ear (that we had to pull out, painful, yuck) but on the way home Leighton signed "listen" to that R side ear when I turned on the music...lover-boy!! It was like he was hearing it for the 1st time.
All is well, and we serve an amazing God!!

HEARING TESTS

2010-09-03T05:17:00.003-05:00

‎...finally...back to ACH at 8 this morning for Leighton's 2nd opinion on hearing!
PRAYING for healthy & strong ears, great attending to the listening 'games', experienced test-er, etc for our special little guy!!
He's been showing us SO MUCH GOOD in responding, gaining language/talking...we need it all to agree!! :)

2010-08-26T19:28:00.000-05:00

GREAT NEWS frm our early Cardiology & Nutrition appts today! PTL :) Yipee...valve appears leaking less, & no more midnight tube feeds!!!

choo-choo

2010-08-25T14:34:00.004-05:00

stopped in the toy store, and LOOK what he was interested in...one of those fun 'firsts'...

This kid is going to rock our worlds!!

2010-08-21T14:09:00.002-05:00

ALL before 9am, still in jammies...Daddy ran to an early haircut, & mommy just wanted to 'start the coffee' quickly...2 minutes TOPS!

"Sister"

2010-08-18T08:46:00.002-05:00

www.deedahandme.com

Oh Happy Day...

2010-08-16T09:56:00.004-05:00

a happy morning drop off with mommy, daddy, brother, & Mrs. Fortenberry...

Sunday after church...

2010-08-11T05:47:00.002-05:00

...trying to escape a diaper change, we looked around the corner to see WHERE he had run...

Neat Story about Leighton's Heart Surgeon

2010-08-08T14:31:00.001-05:00

Visit msnbc.com for breaking news, world news, and news about the economy

Today,

2010-08-08T00:01:00.005-05:00

THANK YOU Everyone...We DO feel it!...God is giving us reminders of his complete providence & goodness in many moments these last couple days...
Today, we casually said something with Leighton in my lap about "pats"...and without coaxing or repeating myself, here came the "pats" to my back...and a hug inbetween...

We plan to have a 2nd opinion, hopefully thru ACH, in the next 1-2 month timeframe...w/better answers as to what is stubborn-Down Syndrome-ADD type-Toddler behavior, and what could be hearing loss (which was thought all the while to be "fluid"...)
Holding on to the positive and SO thankful for God's Grace!
The Tolands

2010-08-05T20:01:00.001-05:00

So, LONG ACH appts...(walked in the house about 30min ago)

Post-op...
airway= ck
tubes= ck
tonsils & adneoids= ck
...LOTS to be thankful about...
then, last on our list...hearing, if it does not improve in 2-3 months, they want to talk hearing aids :( ...definitely a BOMB drop for us...but then my radar was up for some reason...
...OK, praying people...we have a new mission!
For now, I think I need to head underground to deal & process...WHY,seriously, does he have to have 1 more hit??

I need Matt to come home, and God to show his providence! Its been a long week!
THANKFUL for your prayers this afternoon, as ALWAYS!

XO for now!!

post-op appointment!

2010-08-05T14:12:00.000-05:00

Taking Leighton to his post-op appointment...prayers that ALL is well after the string of complications...& some for this mommy's anxious heart too...the constantly changing medical piece of this journey is our hardest to take!

CATCHING UP

2010-07-20T04:29:00.028-05:00

BEACH PICS!!!!
...finally...

beautiful water, lots of kids, excited girl...

why is it more FUN to try out a fork on the TABLE, not the plate???

the fuzzy-ness...is the HUMIDITY!...wow! super steamy hot at 8am!

Rest-time on the top bunk...lil' boy wanted to 'try' to be included everytime!

Prankster!

"June Grass"

Aimee & Eric & Lilly came to see us from Birmingham for a couple days...

Matt calls this her "Esther Williams" Bathing Attire...

Blair wants a baby sister SO much...and might just tell you so! :/ ...she says Lilly is her 'cousin'...

another little July birthday...turning 1

deciding to 'leave' the group & explore...

...these expressions are priceless!

Surgery Day...

2010-07-20T04:15:00.000-05:00

couldn't be any CUTER in his scrubs!

Birthday Girl!!

2010-07-20T04:11:00.001-05:00

GOOD MORNING 5 YRS OLD~

Daddy got back in town from his work trip at 10:00, the eve of the birthday, so somewhere b/w tired parents & "santa" we laid out an American Girl Surprise to 'appear' in the den that morning for her to find...

THEN, more drugs for Leighton,
and off to take Blair to school with cupcakes,

and their 4TH of JULY CELEBRATION PARADE...

(Leighton actually got back in his jammies, to stay inside, lay around & chill...it was just TOO hot & steamy with pneumonia)

...the "fuzzy-ness" in this picture shows the TRUE Humidity!..even in the morning!

This summarizes the photo attempt!

HAPPY no matter what!

Sweet girl...can't believe she's 5!!

She chose lemonade pie, and '' Senor 'quila' " for dinner that nite...I still need to get the pictures from Nanny & Pap...

Welcome to TEXAS Baby Hess Party...

2010-07-20T03:20:00.006-05:00

Gram's in LOVE, again...

So is Emme...

Buttons for all the party-goers...

We love watching this relationship grow...Russell LOVES this little guy & understands so much about him from his pediatric speciality, what we've been through, and what is ahead...wish they lived closer together b/c his time is precious, and his insights are amazing!

THIS is pretty much how are family looks...

Blair, with her buds...

and us...karoule-ing Leighton...

4th of July...

2010-07-20T03:16:00.000-05:00

...10 hrs + 10 more hrs, of insanity driving south/back...for a few hours of fun & togetherness with the Cameron crew...

...3 generations...Russell #1, Russell #2 namesake...and great-grand baby BOY meet...

(Gramps MUST have been flipping the burgers or it would have been all 4)

Uncle Bob's Glasses...

Uncle Russell & his little girls...

the montley crew...LATE NITE chit chat before we all say good bye...Em, did you cry??

SILLY Birthday singing!!..."we can do it like its church"...

HER pick for cake...all decked out

Make no bones about it...this was a hard decision! We kept Leighton drugged well on pain medicine, and hydrated/airconditioned (just like we were doing here)...and drove south! All Blair wanted for her birthday was to BE with her cousins...

...and Uncle Russell only had 2 days off this year! SO, we refilled the medicine, & the surgeon said as long as he looked ok we could try it...

THIS is where life gets hard to manage both children's needs, especially when the one dominates in 'care' and its taking its toll on the other one who can only understand a little bit...its a daily assessment!

lil' boy wasn't quite invited outside though...just to be safe

makes our day!

2010-07-04T22:20:00.000-05:00

...lots to catch up on, we're sure to get done this week...but LOVE this pure joy!! :) Happy 4th!

Leighton, aka Job

2010-06-29T19:47:00.002-05:00

ok, feeling a bit like Job today...THIS is a lot to endure~ did you know this is how we "have to" look every time we check for pneumonia?? ...even as an infant...
...poor angel baby...they sit on a bicycle seat (of sorts) and this contraption is above their waist...suspended about 3 ft in the air...if sweet Blair gets 'word' that it might be pneumonia, she always asks...Oh, brother, do you have to do the bicycle again??

We did end up back home with pneumonia, more meds & prayerful for better sleep...
...this is part of this journey...Better days are ahead for sure!

THANK YOU FOR WALKING IT WITH US!!!

:) All Our Love!!! The Tolands

thanks for all the "checking" on us! Pray for baby Leighton...he's having quite a time recovering from all this airway stuff & no one is sleeping much

2010-06-28T17:54:00.000-05:00

HOME from the beach, and PRAYERS for Leighton's Surgery this Wednesday!!

2010-06-22T06:44:00.008-05:00

2010-06-15T13:38:00.000-05:00

LOOKS can be deceiving on these...more discussion later, let's pray their 'moods' are better after naptime! :) ...been a LONG FEW DAYS...

here comes TROUBLE!!!

2010-06-13T06:21:00.005-05:00

at home after therapy-school...his other favorite activity is to tear-through his backpack...ALL over the floor...as he pretends to read & sort his therapy notes, or extra change of clothes, leftover lunch...

hiding in hard to get-to-spots...

taking those 10 step "jaunts"...

standing UP in our highchair (from seated with tray on) all by himself...and so proud to be so mischevious!

reaching door knobs to open doors...

Begonias & Toes

2010-06-13T06:13:00.003-05:00

Begonias for our Nana & her birthday in heaven!!...got them planted for the 4th, just not uploaded & shared :(

Field Day

2010-06-13T05:48:00.004-05:00

Summertime BOY

2010-06-13T04:57:00.001-05:00

Lemonade Stand!!

2010-06-13T04:48:00.004-05:00

A New NEIGHBORHOOD Friend!!

2010-06-04T08:28:00.001-05:00

Caroline...just her age, size, energy level...right across the street...

...more later, off to work & pool we go!

Your a Grand Ole Flag

2010-06-03T23:07:00.000-05:00

Bored, at home with Mommy

2010-05-26T23:07:00.003-05:00

Lil' Bits FAVORITE thing to do is high-jack the wipes... and wash/wipe EVERYTHING in his path...PROUDLY...

he does floors...

walls & door frames...

OH, & the high-chair...

PROUDLY does his high-chair...

SUCH a mess!...and a JOY!

In a mere 5 minutes He can open & empty about 40 wipes from a travel style package!

...It's been a LONGGGGGG week of low-grade-fever-virus cooped up at home; today we added the all over body rash (never seen it on the scalp before) and immediate STREP diagnosis...so 3 Cheers for Amoxicillin!! HAPPY WEEKEND!

Ohhhh, MORE to come!

2010-05-26T23:03:00.003-05:00

As promised, a few more dance pics...

...little dancer!

1:1 Mommy Bliss?? ...or Target Shopping Bliss??? THAT is the question

Love this!

2010-05-19T09:04:00.002-05:00

Finding rest for your soul

As school ends and summer arrives, we're learning to enroll in Jesus' school: "Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light" (Matthew 11:28-30).

Jesus promises those who follow him fully, "I will give you rest." The Greek original says, "I will rest you," as a doctor might say "I will cure you." We could translate the phrase, "I will impart to you rest." Then he repeats his promise: "you will find rest for your souls." Any promise made twice in holy Scripture is doubly good. How do we know?

He is "gentle"-the Greek word is praus. Aristotle used this word to describe the person who is always angry at the right time and never at the wrong time, who always does the right thing. Jesus is the best boss for your life because he will always do the right thing with your life. When I first heard the gospel I rejected it because I didn't trust what God would do with my life. Now I know that I cannot trust what I will do with my life, but I can always trust what Jesus will do with me.

He is "humble in heart," wanting always your best. The worst boss uses you to advance his career and ambitions; the best boss puts you first. Jesus always does.

His yoke is "easy"-the word means that his yoke fits well. An ancient tradition says that Jesus the carpenter made the best yokes in all of Galilee, and that over his carpenter's shop there was the sign, "My yokes fit well." If the yoke is well fitted to the animal, it is "easy" to bear. He alone knows what purpose best fits our lives, our future. His yoke alone fits well.

Therefore, his burden is "light." If the strap fits well, the luggage is light. If the yoke fits well, the burden attached to it is light. If your burden is heavy today, check your yoke. There are always enough hours in the days we give to God. The will of God never leads where the grace of God cannot sustain.

Have you submitted your day to the yoke of your Master? How can you live every moment of every day beneath his life-giving, rest-imparting yoke? Let's continue tomorrow.

2010-05-09T15:37:00.009-05:00

A Leighton Update

2010-04-28T14:32:00.006-05:00

It's ALL for Wendel...

2010-04-27T06:34:00.014-05:00

Pel's Pals Style Show benefiting the Paul Wendel Maternal-Fetal Medicine Endowed Chair
The models were all children delivered by Dr Wendel, escorted by their daddies...

you should have seen him walk across that stage!

this just MIGHT be my favorite picture ever!

Proud Sister...LOVE the look on her face!!

We have SO so very much to be THANKFUL about! When you consider our sweet little boy, and how God is working in the lives of each person who meets Leighton, the WHOLE outcome of our pregnancy is more positive than we could ever expect!

The 2010 Pel's Pal will be Dr Paul Wendel, Director of Maternal Fetal Medicine at UAMS. UAMS has the only board certified High Risk Obstetricians in the state of Arkansas. The safe delivery and health of our children (and grandchildren) are huge concerns for all of us, and the primary mission and focus of Dr. Wendel/UAMS.
There is nothing like the moment when you find out you are pregnant...There's also nothing in the world as frightening as finding out there is a problem with that pregnancy. No family should have to face this alone...they need to know that the UAMS team is there for them.

**My camera would not turn on, as we sat there waiting for it to start...these are a few photos I've been given by a couple sweet friends to capture the day...THANK YOU!...If you have anymore, we'd LOVE them as a keep-sake of this special day to remember! **

A Story about Leighton, Pel's Pals, Our Family & Dr Wendel

2010-04-27T06:22:00.006-05:00

http://www.pelspals.org/
The "Pel's Pals" Foundation was established in 2007 by Tracy and [Arkansas Razorback Basketball Coach] John Pelphrey in memory of their infant son, John Patrick Pelphrey, who died prematurely in 2003. The foundation was established to honor John Patrick's name by generating financial support to benefit children's charities with a special emphasis on providing resources and education for neonatal efforts across the United States.

Pel's Pal 2010 is Dr. Paul Wendel, our humble & gracious doctor from UAMS!

...We always said we'd do anything...
Good News Matters: Babies & Basketball

http://arkansasmatters.com/content/news/fulltext/?cid=306772

Celebrating Leighton's battle with Congenital Heart Disease

2010-04-26T06:26:00.000-05:00

Go Red Luncheon! Loved sitting at the Cobblestone & Vine tables with some of our dearest women 'support' these last 2 yrs~

HAPPY Easter!~

2010-04-26T06:00:00.001-05:00

a few necessary tears, before...

...a GRAND performance...

:) such a girl!!

weather girl

2010-04-25T18:17:00.000-05:00

more soccer

2010-04-25T05:47:00.000-05:00

A Hunting We Will Go...

2010-04-25T05:18:00.000-05:00

Blair had a big time at an egg hunt with Nanny & Pap...Gram sent her the precious Laura Ashley frock...it was chilly that day!...Leighton decided it was naptime shortly before the hunting began...

(like the ketchup front & center)

Tasting

2010-04-24T08:08:00.000-05:00

I can't get this one to post where it should...

1 for Cynthia, McKenzie & the girls!!

2010-04-24T07:08:00.005-05:00

Spring Break came & went so quickly this year!...that following week we jumped into 3 doctor appts & Easter festivities!

Blair had 2 'snow day' make-ups for school that tweaked our plans a bit...and oh, we had soccer too...the 1/2 family at 1 event, and 1/2 family at another event is never my favorite...yet it's seemed like a lot of that

CHOO-CHOO...

Leighton and I had so much fun at a choo-choo-train party for his friend Finn...where they hunted eggs too...He knew EXACTLY how to 'loop' that basket onto his forearm & GO for those eggs...and open them...and taste...

WOW~! It's been a month already!

2010-04-24T07:07:00.000-05:00

Mommy's been at market for most of the last week...SO SORRY! We will get started!!

Last little Bits of Spring Break Fun

2010-03-29T06:40:00.004-05:00

Georgia comes to visit!!!!

Somehow we 'forgot' to photograph all the other fun & messes together :(

Blair says Georgia is her 'sister' because, "SHE does not have a sister!!"

"UH OH David"...

WORN OUT!!

OHHH DEAR!

2010-03-28T22:09:00.005-05:00

Professional dress-up 'makeover' play...at PINK BLISS

she might know Elton...

Our Lil' Buttercups

2010-03-28T21:31:00.012-05:00

It's My Party

2010-03-27T17:45:00.029-05:00

The blog site has not opened on our computer (nor has any other blog-based site)for the past few days...and we are very behind in posting the birthday pics and such, from the fun days with our cousins, and little party...

There was a 70% chance of rain for Saturday ALL week...and we thought for sure we'd be cancelling the party...We were glad to see the rain hold off long enough to do a bit of celebrating in honor of our favorite boy!! There were so many great pictures, you can click on each one to make it bigger if this version is a bit too small. It was a HAPPY DAY!

a couple more "extras"

2010-03-27T17:44:00.000-05:00

Cupcakes at School

2010-03-16T23:59:00.001-05:00

HAPPY BIRTHDAY LEIGHTON!!!!!
...he LOVED hearing everyone sing to 'me'...as he patted his chest :)

...most of his was one the floor :) and there was no real sugar "high"...

It was a happy day...we will celebrate more this weekend with some family & a few friends...

(and his haircut was moved from this past Saturday til today...we know 'tis messy...)

XOXOX for all the love, care, support, encouragement, PRAYERS, meals, playdates, etc...to make each day more 'normal' & predictable for Blair, and carry us THIS FAR!!

It truly 'takes a village' with this one, and our family is SO GRATEFUL for you, and HIS faithfulness!!!

GOOD, GOOD STUFF!

2010-03-13T08:48:00.009-06:00

WOW! Good, Good Stuff to watch the JOY in his face at the 'power of his wheels'!!

They had us come watch therapy yesterday morning because they wanted to show us something they 'tried'...

He doesn't quite love it yet...and really, in all honestly, looks like a little drunken-sailor distracted & seeking ALL attention of whatever is around him as he goes...
veering off to each side & "bump" into the walls...HAPPY as he goes, though :)

They let us take it home for the weekend to see if he would be motivated to use it more, all temporary, but a great way to add strength to his pelvis & oblique muscles.

Soccer Practice...a new addition to the week

2010-03-06T08:46:00.004-06:00

forgot to post these...

2010-03-04T09:00:00.000-06:00

SNOW ICE CREAM!!...yum, but COLD!

Leighton goes to ECA

2010-02-28T22:01:00.007-06:00

ECA is Early Christian Awareness...and he LOVES it!
Since we can't go to the nursery yet (b/c of extra germs), we started taking Leighton to a 10-15 minute little class where they all sit & have 'singing' with little seasonal manipulatives...
Today we sat through 2 or 3 age groups worth & he just took it all in...

This was when his actual 'correct' age group came in...He did a little cheer! ...Sitting next to our cutest little friend Eliza D...and today was her big 2nd birthday

studying the "tick-tock goes the clock, time for church class to start" song, as it goes around the table

...stealing her snowflake!

SHE's about to steal it back! :) (notice her finger pointed)

PRECIOUS little personalities emerging!!

The Wise Man built his house upon the Rock...she's in the center, back...

Blair's Map

2010-02-20T21:44:00.002-06:00

sort of self-explanatory...we are amazed at all she is learning! and ALL that little brain of hers is processing!

Let's take a walk

2010-02-20T21:16:00.005-06:00

A dear friend of ours had given the kids these pullovers, and we had forgotten to take some pictures of the kids wearing them, til today...

The weather is so mild, we ran a couple errands, and Blair did her daily "let's practice him on his walking; I'll do it!"

...such a little mother hen!

**********************************************************************************************

Then Refrigerator Boy came for a visit, & we actually had the camera to catch it...

reminds us of some we have of a little girl we know :)

...then, a few minutes later, he was back for "round 2"!!...with his blankie to 'sit on'!

Happy Saturday!!

Virtual Valentines!

2010-02-15T14:57:00.002-06:00

HAPPY VALENTINE'S DAY!!
All our valentines were dropped off at the post office, today...
Matt took the kids to deliver his parents yesterday afternoon, and apart from that, it was a quiet day of re-coup!
Thank You all so very much for mailing the kids their own! It was a big time every day when the mail was retrieved...even Leighton held out his hand for an envelope...to keep up with big sister
We cooked a family dinner for our little 4, had bath night, and Matt & I watched Couples Retreat.
The antibiotics have kicked in, and mommy is feeling much better thus far!...we plan to do our cookie baking-painting this week! :)

2010-02-12T07:09:00.003-06:00

Leighton had a good report at Cardiology & Nutrition yesterday!! His heart was not enlarged, they hear only a soft murmur. His valves are leaking mildly on L side, and minimally on the R...we just pray they stay that way, not worse. Nutrition said he looked good, and we will begin a plan to keep eating more by mouth (as long as he is safe w/o symptoms), and hopefully eliminate 1 of his 5 daily tube feeds over the next month.
He slept after the procedure and woke happy & playful, & ready to eat something
By the time we were in the parking lot, I knew I had fever to add to my head & chest stuff...got in bed immediately, and will be at the dr FIRST THING THIS MORNING!...Matt's been having me wear a mask around the kids...and it's been a long night
We are so thankful for a good report! Thanks for your prayers!!

Go Red for Women

2010-02-07T22:36:00.008-06:00

We're still sort of speechless about this one...all of you know we did not choose to walk this journey for praise or popularity. At many moments, it has made us easily want to crawl under a chair. Only 1 general prayer truly left us at peace through the very critical moments, and continues when the daily stress seems more than we want to endure...

Lord, what we thought & understood to harm, you meant for good, and your purposes...may we handle this in a way to bring you honor & glory, and ease the way of others walking the same road...

It still leaves me puzzled, why me? and how public does this have to be? I'm just a normal mom... All we know right now, is that God IS using it for good, for dependence on him in the many moments of weakness(es) when I know I am far from perfect & feel extra scattered, & unsure of what the next-immediate-right thing is...like other normal folks

When you see it all 'summed up' in 1 page of highlights, and seeing where Leighton & our family are now...definitely sparks a bit of 'tenderness'...toward ALL of you family, & friends, & dear loved-ones and co-workers who pray(ed), encourage(ed), walk(ed) this with us! Remember when it was so unsure & somber b/c of the heart defects that all we could do was wait & watch for his organs to grow or start shut down?? Maybe it's just the regular "human-ness" in all this to happen, with no background or precursors

I'm so sleepy, I might have to finish this post tomorrow...as my friend 'Scarlett' would do! (We do go to Cardiology with sedation this week Thursday to take a good look at his heart, incase we don't get back)

SNOW

2010-01-31T10:27:00.000-06:00

Daddy was still sick, Leighton snoozing...and the girls got to PLAY!

Our Winter Days

2010-01-27T03:05:00.009-06:00

BIG, fun, indoor treat from Uncle Bob & Aunt Rita!~

...ahhhh, Bliss!

That so-called "snow day"

Not sure what I think...

Sisterly LOVE...

Daddy's Birthday (yes, pink cake b/c he LOVES Strawberry!)

Gramps & Gram come visit

doll house time

" FINALLY, my "right" 'merican girl doll is here...I love her, Emily-Molly-Avery-Clara!!"

"my 'right' one, and my 'not right' one...are you sure I can't keep it as the friend?"

Not sure who knew the story about the Christmas Morning Disaster of the WRONG BABY DOLL...but she wanted a picture before the "friend" went back to AG.

No fear, to crawl & sit up here! I can see better...& I'll just use her chair like a step-stool

1st time at the dentist...she was captivated, asked a ton of questions! ...and will probably end up somewhere in the healthcare industry for her job FOR SURE!!

funny big jacket

shopping with Mommy "just the girls"...with all the accoutremants! ...stretchy walmart sparkle jean-leggings, shirt 1 sz too small, headband, hello kitty bag & treasures inside, necessary chocolate milk with a straw "can we do the take out kind Mommy?"

2010-01-26T23:57:00.002-06:00

OMGoodness!
Leighton has staff infection (in places where he crawls, mouths & touches everything)...this should be fun :)
story #1
the after hours dr ~definitely on the bless-your-heart-list!!~ wanted us to know that with Staff Infection, how terribly bad the strong medicine tasted, and he was not sure HOW ON EARTH I would get Leighton to take it b/c you just couldn't hide the taste at all in food...did he check the chart BEFORE he came in the room?? primarily G-TUBE?? ...I did not say a word, just noted the g-tube (also infected looking) and he then put 2 & 2 together
...there's a new "after hours crew" ...I am SURE!...
b/c story #2
...initially took wiggly-snotty baby with dancing ballet girl to check the 2 spots/boils on Leighton on Thursday evening...naturally at the bedtime hour while Daddy is in his coma-state...
The friendly Doc comes in to assess & I tell him briefly about the respiratory symptoms (& blue-grey spells), about the boil that had grown 4x in size on his hand/leg...letting him connect or discard whatever info he needed, told of the nurse calls each day (so he knew we'd been monitoring)...and through the chit-chat he suddenly asks,
"Now, why would you have concerns about his heart function & lungs"...nice! L's chart is even flagged a different color I believe 2dary to being a HEART BABY... like I said, new crew!
...and reminds me to quietly THINK before I SPEAK, because it can happen all too quickly to all of us if not for grace!!

Matt went back to the dr today when they heard how horrible Matt still sounded on the phone (& the fact that he'd lost 12 lbs); did another culture, a big shot, and more medicine...
HUMOR is absolutely necessary right now!~ ...and that I am enjoying the quiet alone time finishing this note at 2:15 am, just because :) ...and I got to got to work today for a bit!!

Even Demanding, the kids are adorable right now!
On Wednesday mid-"blue episode",
I had Leighton with me when I picked up Blair from school, talking to his dr enroute (since ACH is close to her school if they wanted us to come). When she got in the car, I had to tell her we would do ballet another day (she was already in her leotard bag to change, etc)...she LOOSES it...wailing!!
He's got blue legs/feet/arm/hands, I'm trying to drive & finish with the dr...and she comes up to my ear and yells with such a mean face in my rear-view mirror...
...YOU are NOT OBEYING ME!!!!...drive where I say!
Sweet, sweet little girl...this is SO very much for her to understand at times when it totally changes her world!...
Leighton is really catching on to signs or words getting him what he wants!
Yesterday morning I have him laying in my lap doing the tube feed & dressing, sort of singing so he will lay still...he looks up at me, pats my leg, and does the sign for drink/his "cuppy", with a big grin from behind his "paci"...SPONTANEOUS, truly thirsty, not near the highchair or refrigerator where it might have just been 'association', etc...

Better take my vitamens & go to bed!!

Toland Health Care Unit

2010-01-24T23:28:00.000-06:00

...my aunt 'dubbed it'...
SEROUSLY! Matt, love Matt, but MATTY/Daddy has now been in bed terribly sick with what they told him was severe strep throat since Wed night/Thurs morning...and not getting better...so, I re-called the dr today to check in...

2010-01-21T20:54:00.001-06:00

So the day after I finally write the glowing report...HE wakes with 101, coughing, viral mess...had 1 of those fun "profusion" episodes where the arms & legs turn blue for some time...and we JUST got home from the after hrs dr for bedtime, 3 days later...calling it viral OR re-active airway again (secondary to weather changes)

Leighton's Progress

2010-01-18T09:00:00.009-06:00

Leighton is growing just great!! We are so thankful for a healthy "early toddler"! ...look at him standing up by himself!!! PURE JOY! He will stand there for approx 4-5 sec, plop back down & cheer for himself. :)
As of December, his heart surgeon is pleased, his cardiologist is pleased, his pulmonologist is pleased, endocrinology, GI, allergy/immunology, ENT, genetics...and general growth & development pediatrics, all pleased...and we continue to stay OUT of ICU or the ER!
One of our favorite doctors was going over all the updates from all the specialists, and reminded us (with a sigh) that in the scheme of babies with Down Syndrome, we are in the top 5% of cases with MANY medical complications or body systems affected...we never thought about it that way...kind of makes us sigh too...
We go back to cardiology for a fairly invasive work up with sedation in the next few weeks, and will update again after we get the results...also are having blood work run for Celiac Disease, which is another area on our "hit list" (it relates to gluten & wheat allergies that can damage the intestional tract). We are praying this is not even a possibility for Leighton.

Leighton still gets most of his nutrition from the feeding tube, 5x each day. It's a high calorie Pediasure that prevents his heart from the fatigue of eating a full meal...although...he is a busy toddler, and does not like it in his tummy, or the sitting still related to its use... He does enjoy pulling it out (like a water hose spewing everywhere with thick vanilla goo...) to get your attention when he has had QUITE enough. Makes it easy to say, We are ALL ready for the transition to begin away from its use, and Leighton able to eat full meals/milk by mouth.
We will see Nutrition again when we see Cardiology, and will broach the subject, though his last swallowing test did not show any improvement. They tend not to change anything in the Winter months b/c of the likely pneumonia.
Being in the Winter months (which new to us are Oct-March) he gets an updraft every morning & evening with steroids to open his lungs, and a very $ shot to ward off intense virus' that like kids with lung damage.
Each week, Leighton can now tolerate up to 5 days of therapy interaction, usually 5-6 hrs each day, that includes 1 naptime, and snack/lunch. The place where we take him is amazing, and they truly love the little guy...Leighton does like to turn on the charm!!
Its website is http://www.accessschools.org/
This has been one of the hardest things to let go of!! Sending your baby with all sorts of special needs & immune system issues into a daycare type setting...even when you know those directing your care want him to excell. The whole senario does not seem natural; but oh, how Leighton is learning, interacting, and developing his milestones not-so-very-far-off what a typical child would do...a direct result of the concept of intense Early Intervention.
Thanks be to God.

He is almost walking...crusing along furniture, standing up by himself, and comfortable going up stairs. We quietly say what fun it would be if he could master this big milestone before or by his 2nd birthday...
He (on his own accord) is a great aim at feeding with a spoon/fork. We thought his OT might be working on this, but they said no, and we had not been at home yet either...low & behold, HE is good at it!!
He is using quite a few words, and a few sign language gestures to meet most of his needs. He wants to eat all kinds of snack food, or things he can do by himself...we just have to make sure his sizes/choices are safe ones. He has 11-12 teeth, and the top set look great...the bottem ones will be taking us to the orthodontist for a long, long time. He continues to drink small sips of very thickened liquid, and each day seems to want more by mouth.
His weight is comparable with where Blair was at this age...about 22 lbs...
Things on the horizon are the bloodwork, which we have a peace about; reassessing his heart function, a sleep study to assess obstruction or apnea, and possibly more GI work-ups if his swallowing does not improve.
We have to continue keeping him from being in too many people/crowds; and no going to a nursery yet. We have a wonderful nursing student who is a great help & knows what troublesome things to watch for as well.

Lots of Blessings in this blue-eyed boy!!

God knew exactly what he was doing when he made Blair to be his big sister! She motivates him & loves on him more than anyone!! & her understanding of his needs is beyond her years...

In the last few weeks, We've been asked to share our story with 2 different groups. Though each group had a different focus, publically putting things in words brings back all the emotions of this journey; and most thankful hearts for God, family, dear friends & community as they rallyed around us, challening us to HOPE each moment of each day.

Escape Artist...

2010-01-18T06:18:00.011-06:00

trying to stand up...

all the way...

SO PROUD of himself!...cheers, for just a brief second, then...OFF...

1st attempt at this next one, and I had Gram there to witness...

This gate goes from the den to the entry way, and stairs...when it gets about that 'time' in the evening, he knows 'up' usually means UPSTAIRS, and BATHTIME (his other all time fav)

...somehow, he got the bottem loose, it must have swung back & hit his head 8x as he figured out how to wedge his head b/w while holding the gate up...

at some point, I wanted to stand back & see WHAT he was capable of when we might turn our heads...

gone...

So Leighton's goal in life is to figure out how to tear EVERTHING down, clear all surfaces, piddle-in-the-potty, and escape to his favorite jaunts...needless to say, when he is 'stretching his legs' (which he needs, to master this walking thing) NOTHING is safe, sacred or hidden!

WOW, little boys are different than girls in just 1 more area!!

Happy Monday from the Tolands!

2010-01-12T17:49:00.006-06:00

She loves him so very much...
I love her whole-hearted tenderness

For Christmas, I asked for 'new' photography of the kids...mostly because we have some of Blair at this 'toddler' age, and wanted him, same photographer/same lighting/coloring...She is very talented, & got lots of excellent shots that are fun & casual too.

Trying to catch up with pics

2009-12-30T09:36:00.001-06:00

kids are up, and freetime gone, so will do the text later, but added lots of new pics to several posts we had not finished in the 1st place, ENJOY!
Lots to be thankful for this year!~

MERRY CHRISTMAS!!!

2009-12-30T08:24:00.010-06:00

Happy Christmas Morning!

...filled with LOTS of Love & Giggles at our house...

Christmas Eve with Matt's Mom

2009-12-30T08:17:00.003-06:00

More Party Time

2009-12-29T17:03:00.007-06:00

2009-12-23T21:27:00.001-06:00

Send your own ElfYourself eCards

SANTA!

2009-12-21T07:24:00.005-06:00

Our friend Noah and his family, and his JuJu's family had their annual Santa Party, and OH WHAT FUN it was right before Christmas...

look at his GROWL-y face!...let me pull this beard (& he did with all his might!!)...Much less, look at Santa's face back at him...priceless

she looks so poised & prayerful!

We never took a hopsital picture...and this one takes it full circle for us! Not that you remember, but our big diagnosis happened around Christmas time 2 yrs ago...and what an amazing support Dr Wendel & his staff were in a deeply challenging time...WOW, to see them together, after "making it" no less, and overcoming so many odds...reminds you, GOD IS GOOD!

As we left, he walked us out to our car, and Blair sat captivated as he told her all about the day she was born...He didn't hesitate to tell her HE got to hold her 1st...before sharing with Daddy :)

pics for all those STUCK in snow in NYC...

2009-12-21T06:43:00.015-06:00

Sleepy Baby...

QUICK! on sneaking up the stairs..."bup, bup"...

Singing In "Big Church" for my 1st time

Sheep "practice" for the Nativity...

Brother, just being cute...and finally looking like he's feeling better

SINCE you're all hibernating together, and bored with the new baby & all...here's the faster way to see what we've been up to! LOVE YOU guys! Kiss HHC for us!

Class Party

2009-12-20T21:18:00.003-06:00

2009-12-17T06:59:00.003-06:00

BOY, a BOY...Henry Hess Cameron...11:55p.m....5lbs, 12-13 oz, 18 inches...mom & baby are doing great, healthy & strong, just 3 1/2 wks early...pics to come soon hopefully!

tomorrow HAD to be better!

2009-12-16T11:06:00.003-06:00

...gonna be a new AUNT/UNCLE/COUSIN again within 24 hrs...wishing we were well & in NYC today for the excitement! ...will this little Cameron be a girl or a boy??

I want my MOM

2009-12-15T18:20:00.006-06:00

Here we go again, SICK! we think IT might be food poisioning...Matt & I have been fighting the nausea, fever, & chills ALL day, Blair says her tummy hurts too...Leighton has not slept through the night in over a month & that means 7+ times a nite (split b/w each other) of getting up to change his unsafe-restless positioning or comfort his cough...we both might ask for a mono test if it doesn't get better...I know for me, it's like I rally, then tire, and the same stuff hits again
WHERE IS MOM??? or Vacation??

Let the Festivities Begin!

2009-12-14T08:49:00.007-06:00

What is it about a little bit of greenery to put you in the Holiday mood?? and that smell...

Blair had a ball at a Santa Breakfast...This last week she had come to us to "inform" that our Elf on the shelf, Zippy, did not have 'good ears' and he didn't really report naughty stuff back to Santa each night...

Well...Santa told her all about how Zippy has excellent ears...even when she's being sassy & such...you should have seen her eyes-wide-as-saucers!!

Leighton has some reactive respiratory crud and a terrible deep cough. We took him to after hours clinic last night...HOW on earth can he still be taking the antiobiotic for strep, and come down with more?? ...they said it's viral...anyway, lots of updrafts, and sleepless nights later...we finally have our tree up (no ornaments) and the garlands done (love that stuff & need to take a pic!) as of Saturday afternoon...maybe we'll actually dig out the stockings & Holiday books this week of the 14th...

Pray for great Dr appts on TUESDAY at Genetics, a wonderful DS Specialist, who is a friend of a friend, and we've been on the list to see for some time...and at Cardiology on THURSDAY...they've talked about 'sedating him' for a new echo

We saw some of his doctors at a party on Saturday night, and they are anxious to see him, thrilled he is learning so much & doing so well...We'll post a good update about the little man after this week...his yearly school conference was end of last week, and they had lots of happy remarks to share as well...God is GOOD!

Matt & I got OUT Saturday Night!

2009-12-13T09:06:00.000-06:00

for a fancy time!

...it was a special celebration evening with ACH, and sweet friends invited us to attend...what an amazing hospital...right in our backyard! I borrowed a dress from one of my most favorite people...and Matt cleans up quite nice too...off we went!

We came home to a sick, little guy...and it feels like forever ago, but what a lovely appreciated time "out" (& good for our marriage).

Wait Simply

2009-12-06T15:12:00.008-06:00

Suggested Bible Reading

Besides this, you know what time it is, how it is now the moment for you to wake from sleep. For salvation is nearer to us now than when we became believers; the night is far gone, the day is near. Let us then lay aside the works of darkness and put on the armor of light; let us live honorably as in the day, not in reveling and drunkenness, not in debauchery and licentiousness, not in quarreling and jealousy. Instead, put on the Lord Jesus Christ, and make no provision for the flesh, to gratify its desires. -Romans 13:11-14 (NRSV)

It is now the moment for you to wake from sleep.
-Romans 13:11 (NRSV)

AS a pastor, every Advent I tell folks, "Over the ages, Christians have found it a beneficial discipline to simply wait; to wait simply; and while they're waiting, to take an inventory of their lives." And then people tell me, "Don't be such a party-pooper." Honestly, I don't enjoy the role of John the Baptist who calls people to repentance. I prefer being Mike the Methodist who attends a slew of Sunday school Christmas parties.

Yet we are called to prepare for Christ's coming as we wait. We prepare for Jesus' coming by acknowledging our need for him. Realizing that we need Jesus isn't very merry. It requires us to be honest about what's missing in our lives and about what's wrong with us. Advent calls us to recognize that the void in our soul cannot be filled by gadgets, entertainment, food, alcohol, drugs, sports, busyness, travel, work, religion, or church. We know that because we've tried. These do not satisfy because the void in us is a God-shaped hole that only the Holy One can fill.

Advent prepares us to see that Jesus, the baby in the manger, is the Holy One of God. If we do not wake up, our sleepy eyes will not recognize God in the baby who looks more like us than like God. Mike Ripski (Tennessee)

Prayer

Dear God, we have a habit of getting lost. As you wait for us to come home,

teach us to wait for you to show us the way. Amen.

Thought for the Day
In Christ, God has given us the gift we most need.

It's OFFICIAL...we ALL have strep throat, & are on antiobiotics...

2009-12-05T07:31:00.000-06:00

a little Sic'Um Bears on the way home

2009-12-01T07:11:00.000-06:00

mommy, look at all these real bear tracks...

SIC'UM BEARS, SIC'UM!

Daddy quietly calls the HOGS off to the side to distract Blair from her cheer...

SA Family Fun

2009-11-30T12:58:00.009-06:00

we finally finished uploading these :) ...sorry, its' been that kind of week...

San Antonio was just beautiful!! SO good to be with cousins, and Janna (as we all) enjoyed her parents and sister and extended family MUCH! Weather was 70 degrees & sunny...no real coats...the entire time! Daddy & Mommy were even able to sneak away 2 TIMES with babysitting to have adult dinner with Emme & Jason, and shopping...SO NICE and important to our marriage life that easily gets pushed down the list!

little buddy did great in the car, and eating, etc...except for the sleeping...he still LOVES to find this 'face-plant' position where he is all crumpled up...and can do it quite quietly...leaving us up 5-6 times a night to re-position...

Blair LOVES her cousin time!!

Our Papa kept up his tradition of 'just a taste' of all the pies...just a small-size piece...

...so I've already been told, I caught lots of people without lip-stick again...so sorry...the memories are still sweet...

Sesame Street LIVE with Gram!

"Just the Girls" all 3 kept telling us...

Riverwalk & Boat Ride... was Papa's Idea, and perfect for Saturday afternoon...

The Photo of our big group at the table was blurry...
We all ate a yummy Casa Rio classic SA lunch on the water afterward with a serenade at 1 point, thank you Jason :) ...Leighton LOVES Guacamole (by the spoonful) and tasted just about everything within his reach!