Monday, December 31, 2012

Friday, December 28, 2012

One month....

Today in the Catholic Church is the Feast of the Holy Innocents...

where we remember those baby boys killed at the direction of King Herod who was manically trying to destroy the threat to his power that the birth of a newborn king represented...

today I also remember my own beloved little boy, an orphan no more, who died on
November 28 despite all the love and care we could give...

and ALL the the orphans in Russia....

2000 years later power hungry rulers are still sacrificing children on the altar of their egos....

my own little St. Henry, please pray for them and the families trying so desperately to reach them.




Monday, December 24, 2012

Abundantly blessed....

I know I have been...

so don't mistake my crying and sadness this Christmas season...

I have loved deeply...

and would never NEVER give up the love to save myself the pain.

I am beyond secure in the knowledge my Henry is playing at the feet of my Jesus and being held in the arms of His dearly beloved Mother.

I am beyond blessed with my amazing husband and the six wonderful children who are still here on earth in my arms and in the two little souls I will hug in heaven one day.

Because I am so abundantly blessed, I wish to bless your Christmas Eve and Day with two videos of Henry...

this one is from last May, 2012, when he began to "babble" weeks after his ear tube placement (remember to click on the arrow below to play the video, for those who I send the blog to directly via email you will need to view directly from the internet at www.bringinghenryhome.blogspot.com)...

video

and this one is the video taken by my 8 yo daughter Ella in Henry's hospital room at Children's Hospital in Philadelphia on November 7, 2012 exactly 3 weeks before Henry died....

video

A very blessed Christmas to you and yours.

Friday, December 21, 2012

I don't think I can do it...

Christmas that is.

At least Christmas the way we have always done it in the past.

With my parents, and sibs and their children on Christmas Day at my parents' house...

With my husbands family at our house all the next day...

It would kind of wreck the children's Christmas joy to have me curled up in a ball in the corner of the couch sobbing for the whole day...

Because I am not done crying yet.

In fact, I think I have not yet begun to cry...

The numbness that lasted about 10 days after Henry died is gone...

a raw aching hole remains and is keenly felt almost every moment of the day...

But especially when I see his pile of toys in the corner...

When my 3 year old Tessa asks at least 3 times a day to play house with me -

"You be the mommy, I be the big sister, and Henry be the baby who died."

I no longer go to therapy 4 times a week and see and talk with the women who were helping Henry and became such a huge support in my life...

I no longer "fit in" many of the Facebook groups I joined to discuss parenting a special needs child...

My whole life was mapped out for the next 18 years...

And now a HUGE chunk of that future has vanished.

I had a massive back crisis last Tuesday involving a bulging disc that landed me flat on the couch with severe pain and spasms the last 2 days... It is slowly getting a bit better with treatment and gentle therapy...

My brother in law said I should get a 20 pound weight to carry on my left hip to get my body back in balance...

And while he meant it a bit tongue-in-cheek, I do not doubt one bit that this is the problem...

My body is physically rebelling and reacting to the physical absence of the boy I carried around, who ate in my lap and who slept curled up on me or under my arm every single day for the last 14 months....

And my emotions are being "stuffed down" into my back and muscles because I feel I cannot cry in front of my children or anyone else and that it is time to get "back to work" and get all the accouterments of Christmas completed...

Heck I have not been able to go to my local grocery store because the last time I went was the morning before I took Henry into the hospital and I know I am going to look like a crazy woman walking around crying as I put items in my cart...

I just don't think I can "do" Christmas.

And I am not going to beat my "perfectionistic type-A" self up about that.

But what I think I CAN do is love my husband and children and family and thank God for sending his Son...

But quietly.

And maybe in solitude.

At least for this year.





Saturday, December 15, 2012

An early Christmas present...

...for me...

...and for you...

I found 2 videos of Henry on my phone which I did not know were there...

they were taken by my 8 yo daughter Ella...

Here is the first (click on the triangle to "play")...

you will see the second on Christmas eve...

Thank you Jesus for this sweet present.

video



Monday, December 10, 2012

Sharing this...

http://southtownstar.suntimes.com/photos/galleries/16790727-417/vickroy-henrys-legacy-tiny-toddlers-light-shines-on.html

Don't miss the video of sweet Henry playing at the mall last spring...

I miss him so so much....

Monday, December 3, 2012

Before and After.

One of the most surprising things to my family and I as we mourn Henry is how stark the division has become for so many things in our life.

Yesterday as I was driving my son back to college I thought, "The last time I drove Luke back to U of I Henry was waiting for me to come home."

As my husband watched football Sunday afternoon he thought, "This is the first Bears game without Henry with us."

This morning as the alarm on my phone sounded to remind me to take Henry to therapy I thought, "I will have to cancel all 4 of the alarm reminders on my phone since we will not be going to therapy or having therapists come here any more."

A stark dividing line.

Before and After.

Before - Henry with us.

After - Henry not with us.

So it is easy to fall into the mindset that "before" is good and "after" is bad.

But what about this....?

Before - Henry abandoned in an orphanage crib.

After - Henry our beloved son and baby brother.

Or this.....?

Before - Henry with Larsen's Syndrome here on earth.

After - Henry perfect in heaven.

God takes ALL THINGS and makes them new.

He can take our worst pains and tragedies and turn them to joy through people who listen to His promptings and act as His hands to those in need...

Like all of you did for me and my family.

Through the almost 200 comments on my blog post that Henry had gone to his heavenly home...

Through a wall of light and love on my FB page that my husband and I wept over at midnight after Henry's wake...

Though teary eyes mamas and dads who brought their babies and children to say good-bye...

Through flowers and food and donations sent from close friends and even strangers... From my next door neighbor to a priest from Great Britain who I have no idea how he found Henry's blog...

Before - we were gratefully accepting help to pay for Henry's funeral and his final medical costs...

After - through your generous hearts, we have enough to pay for these...

And some left over to bless others.

We will be donating to the Village of Hope in Guatemala, where a brave family has moved their many children to care for orphans (international adoptions are not allowed from there) and the hungry, especially those with special needs. You can read more and make a tax deductible donation here:

http://www.nogreaterjoymom.com/2012/12/mission-house-for-life.html?m=1

Our family will be donating 7 bricks ($25 each) - one for each of our precious children, including Henry.

Please ask if you can help to build this House for Life - for those precious children who have no chance at an "after" with a loving family like Henry had for 14 months.

Thank you from the bottom of our hearts.

Saturday, December 1, 2012

As we prepare....

for Henry's funeral Mass and to lay him to rest, I was compelled to tell each and every one of you that looking at my facebook Wall last night and reading the 100+ comments to my blog post Wednesday was one of the most amazing moments of my life.

You could not have touched my family and I more.

This morning my dear husband woke up and Googled Henry's name. There is page after page after page...

Those candles and comments and blog posts say to me that Henry's little life, his own special little flame, mattered.

I know he will continue to shine brightly from heaven. Thank you from the bottom of my heart.

Thursday, November 29, 2012

The blessings of so many...

Are being poured out on us today.

I am humbled.

And so grateful.

Sharing this tribute with you...

http://the-scenic-route-momto6kids.blogspot.com/2012/11/henry-angel-among-us.html?m=1

Henry is in heaven and wants for nothing.

Please pray for those of us missing him here.

Wednesday, November 28, 2012

Henry is finally home.

His ultimate home.

The home where it was my job, as his mommy, to deliver him.

Home with Jesus in heaven.

Rest in Mary's arms with no pain my sweet baby boy.

Or maybe you will be running with a straight back and strong legs, playing ball as the left-handed pitcher you were meant to be.

I will miss you.

I was so blessed to be your mommy .

I know that one day I will see you and you will call out to me...

"MaMa!!"

Until then my youngest boy, my "lucky number 7"....

Until then.

Sunday, November 25, 2012

Out...and in...

So I realize I left you all hanging...

We DID get home from CHOP on Nov 15...

It was a glorious week, Henry was so glad to be home, he began rolling again within 5 hours of hitting our living room rug to play with his toys...

I snuggled with my children, went to an amazing dinner and awesome movie (Skyfall) with my wonderful husband...

Did a real estate closing, went to prayer group Tuesday night, was catching up on some other law work (and laundry!) and began preparing for Thanksgiving...

Then Henry started running a fever on Wednesday...

And on Thursday (Thanksgiving) was feverish and uncomfortable...

By Friday he was in outright pain...

So we headed to the ER here at Lurie Children's in Chicago and Henry's white blood cell count was high and his hemoglobin was very low...

And early on Saturday morning one of the incisions on his back burst open and infection came pouring out...

Our surgeon in Philadelphia was consulted and this morning Henry went into surgery to clean out a massive infection all through his back... He has two "wound vacs" placed, one on each side of his spine...He is still intubated right now for pain control and to let him rest a bit... He was in a great deal of pain these last few days which has been very hard to control...

The hope is that antibiotics and the wound cleaning will resolve this infection so we can keep these VEPTR rods in and not have to return to CHOP in Philly...

A dear friend of mine put out a Facebook plea for prayers for Henry, asking our Catholic brothers and sisters to ask their favorite saint for intercession for Henry's healing...

Let me know in a comment if you have lifted up Henry to a special saint who can whisper Henry's name to our dear Lord on his throne...

I will be asking Servant of God Dr. Jerome LeJeune, who discovered the gene that causes Down Syndrome and devoted his life to children with that condition and other chromosomal abnormalities (like my Henry's Larsen's Syndrome)...

We ask for prayers from the living and know God will hear them, so it truly makes sense to ask for prayers from those in heaven who actually see God face-to-face...

So you have your mission!

Henry thanks you!


Wednesday, November 14, 2012

A light at the end of the tunnel...

Discharge is coming....

Soon....

Yet it cannot come TOO soon!

Henry wants to roll around on his OWN floor with his OWN toys!!!

Monday, November 12, 2012

Fading Fast...

I apologize for the lack of blog updates...

I was nice and busy and oh so happy when Paul and the children arrived Sunday night and Henry left the ICU and was transferred to a regular floor on Monday night...

And then they left Wednesday night.

And Henry needed racemic epi treatments and to be on c-pap Thursday.

And I lost it.

Emotionally and physically hit bottom.

I publicly apologize to every friend and family member I called as a crying emotional wreck that day.

But the good part about reaching out (even though I did not do it in the best way) is that so many responded.

And my tank got filled up on Friday.

And I kept it together through a long weekend.

And thought I could make progress today on Monday...

But there are problems with getting a medical transport home...

We are getting a CT scan and need to have it under general anesthesia... And it got moved back from 8am to Noon...with Henry unable to eat or drink after midnight...

We don't have official orthopedic permission to leave this week either...

*sigh*

I don't have much left.

Pray us outta here soon my friends...

Sunday, November 4, 2012

What would you call it???

I don't toss around the word "miracle" lightly...

But when we first got here to CHOP for our pre-VEPTR testing, the docs reviewed the results of a recent sleep study Henry had on Oct. 3 showing severe sleep apnea and multiple desaturations under 90% oxygenation, about 10-15 times a night....

They wanted to put him on a c-pap to deliver oxygen and help get the CO2 out of his lungs the first night we were here...

I fought to not have that happen... because while our sleep that first night documented the multiple desaturations, Henry would rouse or move and a minute or two later his numbers would go back up...

but coming out of general anesthesia (GA) has always been a different experience... all 3 GA procedures in 2012 have required extra meds and/or oxygen to get Henry back to his "baseline"...

In other words, Henry NOT needing oxygen after GA has never happened...

Ever.

Even if the GA was only for an hour for an MRI.

But now...

after 2 days on a ventilator...

after a HUGE 5 hour surgery splitting open his back to insert 2 titanium rods....

Henry has ONLY been on room air...

needing no extra breathing help at all...

always keeping his oxygen saturation over 95%, even while sleeping and even while on pain meds which often
suppress breathing!!!

This is huge!!!

And unexpected.

The docs told me before the surgery that initial VEPTR rod placement usually affects the child's breathing negatively... As the pressures and blood flow in his chest cavity are now SO different...and that children ages 2-7 usually have improved pulmonary profiles post-VEPTR but such gains only come after MONTHS...

Sometimes years...

How to explain my Henry???

I can't.

So I will just thank the Divine Physician.

For yet another extravagant blessing....

like Henry himself.

Saturday, November 3, 2012

That moment...

When your adopted child rouses from post surgery anesthesia on a vent searching frantically with his eyes... And his meet yours... And his whole body softens and relaxes and he squeezes your finger and slowly and peacefully closes his eyes again...

Yeah, that moment...

Worth every penny, every sleepless night, every hardship....

Thursday, November 1, 2012

VEPTR complete!

It was a 5 1/2 hour surgery...

But we are done and in the ICU.

Two titanium VEPTR rods are now between Henry's ribs and pelvis and a big "gantry" extension comes off one rid and is wrapped around his now separated ribs to make more room for heart and lungs on his left side... Dr. C could not get quite as much correction on the spine as he wanted as H's spinal cord could not tolerate movement past a certain Point...

But we will come back to CHOP for an expansion in 4 months and see if his spinal cord can tolerate some more correction at that time...

Henry will stay on the ventilator for a while... We also received some bad news about his airway and future treatment needed that I am asking continued prayers for...

It is pretty brutal to see your baby boy struggling with all 4 limbs against restraints with a tube down his throat and a bloody line in his neck while he cries huge silent tears until the next round of pain meds kicks in...

So both Henry AND his momma is begging your prayers too on this All Saints Day!

Thank you all and I will keep you posted!

Wednesday, October 31, 2012

The VEPTR is ON!!!

Just got the call! We are scheduled for Henry's initial VEPTR implant tomorrow, Thursday, Nov. 1!!!

The Feast of All Saints!!! How awesome is that!?!

Henry had a GREAT night and is Off supplemental oxygen and happily playing and we are READY to roll!!!!

Tuesday, October 30, 2012

The big long "Henry at CHOP" update PART 2

Ok everyone, I have about 15 minutes to give this blog update until the evil respiratory therapists come to force air down Henry's throat while he wears a Darth Vader mask...

Just kidding.

Sorta.

If you have not read Part 1 of our amazing adventure that started last Wednesday, click on this: http://www.bringinghenryhome.blogspot.com/2012/10/the-big-long-henry-at-chop-update-part-1.html

I'll wait.

So when last we left you faithful readers, Henry was on a bit of oxygen Thursday night and was not allowed to eat after midnight and we were starting to wonder about the status of our MRI the next morning...

and our "wonder" turned to "generally ticked-off" when at 8am the next morning we were told there would be no MRI as the schedule for MRI's under general anesthesia was booked....with no explanation for why Henry's MRI was the one not in the computer/on the schedule...

which meant that on Friday, Saturday and Sunday I would be an inpatient with NOTHING TO DO ALL DAY BUT SIT IN A HOSPITAL ROOM WITH A 2 YEAR OLD until the MRI Monday morning.

I was a bit peeved as you might imagine. Paul and Tessa could have come with after all and we could have had 3 lovely days touring Philly.

My second tear-filled breakdown of this CHOP trip happened about noon that day and I summoned the social workers at the hospital to tell my tale of woe and try to find out why all these missteps were happening.

They were good listeners...but ended up throwing me some cafeteria vouchers and hoping the rest of our stay was better.

I tried to chill for the weekend. Clearly what was going to happen was going to happen.

Henry and I napped.


We played catch - translation: "Henry whips the ball somewhere in the hospital room and mom has to go fetch it out from under the medical equipment while Henry giggles."


We went downstairs and looked at the pumpkin carving contest winners.


We got a balloon!



We had a visitor! Fr. Mike, an Augustinian priest friend of my MIL and her good friend Mrs. B, came to bring me Communion on Sunday and to anoint Henry in preparation for the MRI and VEPTR implant.


So we tried to go to bed early Sunday night in preparation for a very early Monday morning MRI...but Henry had a late nap and was resisting sleep...so we kept the TV on and ALL THAT WAS ON EVERY SINGLE LOCAL CHANNEL was frantic reports about some hurricane or tropical depression or nor'easter or  similar weather Armageddon called "Sandy" which I barely paid attention to while trying to interest Henry in his "Where is Elmo's Blanket?" book which we had already read about 47 times in the long 3 day weekend....

We were brought down for the MRI at 6:30 am Monday morning and I got to wear those nifty blue scrubs and pretend I am a doctor until I walk Henry back into the Operating Room and hold the sedation mask over his fact until he falls asleep and I kiss him good-bye and head to the waiting room....


The dynamic MRI took almost 2 hours and I went to recovery with Henry who did well....but per his usual profile...he needed a bit longer and some oxygen help to recover after the sedation...so we were sent up to the PICU for recovery since Henry would be going there anyway after the VEPTR the next day...

Henry was still pretty groggy so I was able to sit and eat and watch TV where the weather forecasters were whipping themselves into an absolute FRENZY over Sandy, which was starting to cause heavy rains and a bit of wind here in Philly Monday afternoon (Oct. 29)....As I had a cup of coffee at Henry's bedside, I saw that the mayor of Philadelphia was ordering the subway system closed in just a few hours in case of flooding and that many of the bridges in the area would be shut down in the evening and closed indefinitely...and I started to have a flutter of worry...

which blossomed into full-on disbelief as a khaki-clad Dr. Campbell (I have NEVER seen him out of OR scrubs on any of our 4 trips in 2012 here to CHOP) announced that the hospital had made the unprecedented decision to shut down the OR at CHOP all day Tuesday to all scheduled procedure except for urgent life-saving operations...

so Henry's VEPTR implant was cancelled.

Dr. C said he was hoping to reschedule his out-of-state VEPTR patients (there are 3 of us here) for Thursday morning but we would not know for sure until Wednesday afternoon or evening.

Ladies and Gentlemen who think they have control of their lives and that their own amazing intelligence and skill and organization is responsible for the wonderful outcomes of their lives/marriages/children/careers, etc.

I have a newsflash for you.

Control is an illusion.

In this life we are at the mercy of so many things....sure, we can (and should) do the work we can to optimize the best outcome...

but we cannot guarantee anything.

So I sit here.

Waiting still.

With plenty of company.


With my Henry....who we just discovered LOVES BBQ Pop Chips!


And I wait.

And I will keep you posted.

Saturday, October 27, 2012

The big long "Henry at CHOP" update PART 1

Our day started VERY early....3:30am on Wed, Sept. 24...up and then out by 4am to head to O'Hare...

Henry and I caught our flight to Philly...

it was exhausting for him :-)


We arrived after an easy flight and grabbed our bag and were waiting for the shuttle at about 9:30am Eastern Standard Time when I got a phone call from CHOP admissions that went something like this...

CHOP: When will you be arriving?
ME: In about an hour.
CHOP: We will not be ready to admit you until 9pm tonight, can you go home to wait?
ME (in shock): Um, no...I'm from Chicago...and I'm now in Philly...with my severely disabled 2 year old....
CHOP: Oh. Well come here and we'll see what we can do.


(Sorry, I spent about 20 minutes trying to get that pic to stand up straight but can't...you can see the look on Henry's face though...that is what I felt.)

Anyhoo...off we blithely traipse to CHOP, certain the the #1 or 2 Children's Hospital in the US (they trade off with Boston's Children's Hospital every other year, it is a matter of great distress to the powers-that-be at CHOP I have been told) will have worked out a solution for us by the time we get there....

Nope. We were told we could wait in the cafeteria or up in the Family Resource Center...which has a table, chairs, tv and some books....for 11 hours....

But my awesome friend Trish came to my rescue from New Jersey, driving out to pick me up (after securing a sitter for her sleeping TWIN ALMOST 2 YEAR OLD GIRLS!) and bring Henry and I back to her house for a lovely afternoon and then dropped me off with....

My OTHER awesome (new) friend Lauren, who let me spend the rest of the afternoon at her parent's house where Henry had tons of fun with her 2yo son...


(OK Blogger you are really ticking me off now.)

To continue...

Lauren and her mom and little guy drove us all the way back into Philly at 8pm so Henry could get admitted to CHOP....we arrived and were taken up to the PICU floor and met an awesome nurse we had on a previous CHOP stay who got us settled into our room, did admission paperwork and medical checks for Henry, and we got ready to sleep after a long day, turning the lights off at about 10:30pm....

but then a PICU doc could not verify why were there and decided to move us to another floor...

at Midnight.

Crazy.

But it happened...at 12:15pm I had to pack up everything and be rolled with Henry to the 8th floor (the pulmonary floor)....

and then they tried to come in AND RE-DO THE WHOLE ADMISSION EXAM on an exhausted Henry.

I told them to go pound sand.

The next morning an apologetic resident (who had probably pulled the short straw at rounds) came in and "Sorry Ma'am-ed" me for a bit....our awesome VEPTR doc, Dr. Campbell and his assistant did also later in the morning....

We had a few more small hiccups but then went to get Henry's Pulmonary Function Test done...

Here is what getting a PFT looks like...



Henry was sedated (giving him an oral dose of what I can best describe as a really strong kind of benadryl)...but it was no picnic...they artificially inflate and deflate his lungs...and do it very fast...so his little body kind of "slams" into the bed...it was frankly kinda freaky...

He was really tired after...which was GREAT...because we got in his CAT scan with no additional sedation...he looked at me as they strapped him on the table to go into the humming huge "doughnut" which is the CAT scanner and then closed his eyes back up and went right to sleep and stayed that way through the 5 minute scan!

We headed back to the room and everyone noticed he was coughing a lot...he was de-saturating and having trouble keeping his oxygen levels over 90% (the baseline for room air) so we put on the little nasal canula for some oxygen....he was able to eat a bit and then went back to sleep...I knew I needed to sleep too as I had been told we had a busy day Friday with Henry's MRI that needed to be done under general anesthesia...but it was strange that anesthesia had not been up to clear him yet....nonetheless I was told Henry was NPO (nothing to eat) after 2am to prep for this next procedure which HAS TO BE DONE prior to the VEPTR implant (scheduled for this coming Tuesday, Oct. 30)....

so I went to bed tired but thinking it was a better day and now things would roll right along...

WRONG!!

(Part 2 coming tomorrow!)

Wednesday, October 24, 2012

And awaaaaaaayyyyy we go!!

To Philly...

To CHOP...

To VEPTR surgery Oct 30....

Henry is ready to fly!

See you on the East Coast!

Tuesday, October 9, 2012

Getting ready....

We have our new surgery date at Children's Hospital of Philadelphia (CHOP)...

October 30!!

Go to www.veptr.com if you want to see what Henry is going to be doing while you are trick-or-treating :-)

We are getting ready in lots of ways...

like having a sleep study to compare his breathing now to how it was 6 months (and several pounds and inches) ago...

Could YOU get a good nights sleep like this?!?!?!

to

Lots to do!!! Time get started on my day....Have a good one everyone!


Monday, September 24, 2012

It takes me back....

When we traveled to Eastern Europe to bring Henry home last August my younger sister gave me a going-away present.

Starbucks Via caramel coffee.

I had never tried it before but she said it was delicious and that I should have a caffeine source readily available in case our crazy travels through Eastern Europe did not allow for regular access to energy-boosting delectable coffee comfort.

I thanked her profusely (she knows me so well!) and tucked the 12 packets deep in my suitcase.

We left on a Tuesday, arrived in the capital on Wednesday, received Henry's referral on Thursday, and traveled 5 hours down to Henry's region to meet him on Friday...

I did not unpack enough to find the Starbucks packs until Monday. On that day our days started to flow in a predictable pattern many adopting families refer to as "Groundhog Day" (in reference to the Bill Murray movie where he re-lives the same day over and over in the same small town with only minor variations).

Wake up. Get ready. Eat.
Visit Henry in orphanage from 9-10am.
Back to rental house.
2 hours.
Lunch at noon.
Visit Henry in orphanage from 1-3pm.
Back to rental house.
Nap. Sometimes food shopping.
Dinner.
Computer contact with home (since we were 8 hours ahead).
Watch a DVD or CNBC.
Go to bed.

Every day.

For 12 days.

We were some of the lucky ones... We had Court the second Tuesday down in Henry's region and I took Henry out of the orphanage the next Friday (Paul had gone home while I was waiting for Henry's passport to be ready).

So 12 days of waiting for Henry.

Remember that "2 hour" slot from the schedule?

Paul and I filled it differently.

He would go for a walk or work on the computer or read... Generally stay busy.

Not me.

For that time I just sat...

clutching that precious mug of caramel coffee from home...

Thinking of my six children at home...

And the one still in the orphanage.

Nursing the comfort of that cup the way I wished I could have nursed Henry...

Breathing deeply its sweet smell the way I would breathe in the soup-y smells of his hair and head...

Drinking deeply of its heady dark flavor the way I spent the morning working to make and keep the gaze of Henry's dark green eyes...

Today Henry turns 2.

Today I made a Starbucks Via caramel coffee.

Today that smell and taste brought me back.

Happy Birthday Henry.

No going back for you my boy.

Only forward...

With a whole family by your side.







Friday, September 14, 2012

A little "too" quiet...

You might have thought that recently...

and you would be right.

I was gearing up for Henry's big VEPTR implantation surgery at CHOP in Philly...

We were scheduled to fly out Wednesday September 12...

but there were a few wrinkles introduced on Thursday the 6th...

that were not resolved on Friday the 7th...

that no one was calling me back about on Monday the 10th...

so I started a phone marathon between Chicago and Philly on Tuesday the 11th...

which finally resulted in a surgery cancellation by 3pm Chicago time.

Several reasons, all related to Henry's anesthesia problems...

all very necessary to keep him safe and healthy, but a disappointment nonetheless...

so I spent the rest of Tuesday and Wednesday trying to UNDO all the arrangements I had made to leave town for 3-4 weeks...

then I spent yesterday (Thursday) in kind of a fog...

today is a bit better.

Trusting that God does everything for a purpose and that the VEPTR surgery will happen in His perfect time!

Because Henry is perfect.


Because God is so good to have brought him to me and made me his mommy.


Because control in this life is only an illusion.


But LOVE is real....

so we wait.

Wednesday, September 5, 2012

Home (belated)...

Just realized I should have let you know we got out Friday afternoon...

Henry was not happy to get buckled into his car seat for the first time in 5 days...

But look at those STRAIGHT WHITE teeth!!

And our countdown to CHOP begins... Leaving in one week!!!

So much to do!!!

I should make phone calls!

Organize medical records!

Finalize care and food for my kiddies left behind!

Or...

Have a cup of coffee.

Mmmmmm....

I'll be more productive tomorrow.



Thursday, August 30, 2012

Better and Better!

After a totally cruddy almost 24 hours, my sweet Henry seems to have turned a corner about 6pm last night...

His breathing improved...

The fever has not come back...

He had a VERY good night's sleep...

And woke up acting much like his normal self!

So we are weaning down his oxygen and letting him eat again...

The plan is to move us to an "observation" room for one more night just to make sure he does not have any "rebound" airway issues...

And if all goes according to plan, we will be "outta here" Friday morning!

Keep praying that happens!

Wednesday, August 29, 2012

Yep, he did it again...

Henry is SO special...

A dental surgery originally estimated at 2 hours takes 4 1/2 hours...

What looked like an easy recovery and precautionary overnight hospital
stay turned at midnight into fever, vomiting, de-saturating, nasal canula for oxygen, weird high blood sugar results, weird chest x-ray results, and finally morphine so my little guy would stop screaming (from 4-6am)!

The good news is the 102.5 fever finally broke about 9am... The bad news is he is still working too hard to breathe and they are still not sure exactly what caused/is causing Henry's problems...

So we are on way down to the ICU...

Thanks for prayers!

PS His teeth look GORGEOUS :-)

Tuesday, August 28, 2012

Betcha can't guess what Henry is doing today....?

He is having dental surgery!

Last Tuesday - Aug 21 - we had a follow-up visit at the Lurie Children's dental clinic to get some heavy-duty fluoride on Henry's teeth to get us through his VEPTR procedure (scheduled for mid-September).

But the dentist found an infected tooth and abscess in his the gum above it that needed to be dealt with ASAP.

While Henry is under General Anesthesia.

Blech.

And Yay.

BLECH because you might remember Henry is 1-1 on the anesthesia reaction scoreboard - 1 good experience and 1 bad (that landed us in the PICU for 9 days after a sedated CAT scan on Good Friday).

YAY because I have been trying to get Henry's declining dental situation taken care of for MONTHS, but kept getting "well let's do this procedure first" and "his dental issues are the LEAST of his problems"...

True, but...

infection is a BAD THING when you have such a big surgery like VEPTR rod implant coming up...

And it would kinda affect his whole quality of life should all his teeth rot out of his mouth...

So while dental surgery was not what we were planning for today (it is Tessa's first day of her "speech preschool")...

We are here and ready to go.

Surgery at 12:30.

Friday, August 24, 2012

One Year


                                                                  Late August, 2011




                                                                Late August, 2012

From a one year old laying in a crib...

To a two year old who can roll all over the house, pull open our sliding glass door, shakes his head "NO" when upset, loves french fries....

and who has the love of a mommy and daddy and brothers (3) and sisters (3) and grandparents (3) and aunts (lots!) and uncles (lots!) and cousins (at least 30 and still counting!)

The best year of my life. Hands down.

Wednesday, August 8, 2012

OLIVER SIGHTING!!!!!

Just yesterday....

the day my Uncle offered a Mass for Oliver and all the other orphans and families of Reece's Rainbow...

I received this AMAZING information from a family adopting a child from Oliver's orphanage!!!!

                ************************************************
    • We saw Oliver today!! Sadly we did not get a photo - sorry  :( He was being strolled for a walk outside by a nanny. The nanny even picked him up and held him for a little bit. He is Beautiful!!!
    • He was lying down and when the nanny picked him up he was flat as a board :( I doubt very much that he can sit -
    • Yes, he was loving life outside!!!!
    • no we did not hear any vocalizing - sorry :( he did seem to be interested in being outdoors - YES!!! Oh Love the matching grant!!! WOO HOO!!!!

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

      So we now know that Oliver has NOT YET BEEN TRANSFERRED!! Which is huge!

      Also that SOMEONE IS NOW GETTING HIM OUT OF HIS CRIB!!!
      Thank you Lord for sending him someone to care for him!

      But the urgency remains...

      Knowing what I do about the care schedules in orphanages in Oliver's country, this caregiver probably does not work on the weekends....there is a minimal staff on Saturdays and Sundays...so this kind of attention would only happen during the week, and probably not every day...

      Also Oliver is already 5...so he is living on BORROWED TIME...he is eligible AT ANY MOMENT for transfer to the institution...where the caregiver to patient ratio is much much lower than at the babyhouse....

      We know more now.

      He probably cannot sit up. Right now. He probably is non-verbal. Right now.

      Same with Henry.

      But don't let this scare you.

      Click on the video below:

      video

      THAT is the reality of a non-verbal, cannot "sit up or hold his own head up" child...

      Not scary at all is it??  Frankly its tons of fun! Hear how excited I sounded as he figured out his dinosaur toy!! See how proud he was of himself!!

      Now that we know a little more about the reality of Oliver's life...
      and I have shared the reality of Henry's life...

      can YOU do your part to help make Oliver having a family and a future a REALITY??

      Pray. Share. Donate. Adopt.

Monday, August 6, 2012

All Oliver...All the time....

YES! There is more!!!

More pictures of Oliver here:

http://www.orphanreport.blogspot.com/2012/08/hang-on-oliver-new-chance-to-save-him.html

And a new blog by the WONDERFUL family offering his matching grant!!!

http://advocatingforoliver.blogspot.com

PLEASE GO SEE...and share...and donate if you can....

and I will offer an extra incentive!!!

My daughters (ages 13 and 7) make handmade beaded bracelets, many with blown glass bead and semi-precious stones...

some examples are shown below...



If you donate $100 to Oliver's grant fund, email me your PayPal receipt (Dobspc@aol.com) with the main color you would like in the bracelet and the size needed (women's or girl's or you can be exact with the inches around your wrist)....

and I will have my daughters hand-craft a bracelet TO YOUR SPECIFICATIONS and mail it out to you!!!!

Let's get his fund up and rolling and meet that matching grant!!!

My uncle (a Catholic priest) will be saying Mass at 1:30pm Central Time specifically for the intention that God protect Oliver's mind and heart and send him a family...my children and I and several other prayer warriors will be attending...

PLEASE join us in asking our heavenly Father to set this sweet boy into a family!!!


Friday, August 3, 2012

I am in love....

with my handsome husband...

with my 7 wonderful children...

and now with this sweet boy thousands of miles away...

Meet Oliver.


Yes, they dress boys in pink in Henry's country....Here is Henry in pink when we met him....


Oliver is a boy with achondroplasia (dwarfism) and dislocated hips (like Henry) and club feet (like Henry) and his hands even look to have the same limitations that Henry's do (permanently bent at the elbows with crossed fingers)...

and he is 5 YEARS OLD....

his fate is what Henry's fate would have been...

a life abandoned in a crib....fed a bottle twice a day...probably only changed twice a day...

two other mothers adopted other children from his orphanage last year and saw what dire straits he was in (one blog link is HERE) but he was not eligible to be listed for adoption until he turned 5 due to the laws of his country...

This is what the other mother had to say:


My heart broke for her and for all the others that I couldn't help. This little boy is available for adoption on Reecesrainbow. He was in Victoria's room. He has a form of dwarfism. He was never let out of his crib. His postion was never changed. They kept him covered up with a blanket so no one would have to see him.


Covered up so no one has to see him????

I cannot bear it....that sweet boy and those beautiful eyes...hidden...thrown away...

Another family cannot bear it either.

They have generously offered a $2000 matching grant for ALL DONATIONS, no matter how small, added to Oliver's grant fund between today and August 19...

Please...I beg you...click here : http://reecesrainbow.org/32923/oliver

and add something to his fund...

are a momma and daddy out there for him? who see the precious child of God he is?

Who have the COURAGE to go on the adventure of a lifetime and rescue him???

I will be praying....with Henry at my feet...doing all the things little boys should be doing...even if he cannot sit up or hold his own head up...with dislocated hips, feet, and elbows...still non-verbal...

still one of the biggest blessings of my life.

Please someone....let Oliver be that for you...

and you too can be witness to joy!!!

video




Tuesday, July 17, 2012

Porter (and Catherine and Victoria) have families!!

First of all, the awesome news....

PORTER HAS A FAMILY!!!

Go here and show them some love!

Then you NEED to read this post by my friend Catherine....

her blog posts are usually HYSTERICAL...

but yesterday's was serious...

because it is about the 2 girls she adopted from Eastern Europe last year...

Victoria and Francesca in July 2011...


Victoria and Francesca in July 2012....


I put the link right here....now go get a tissue (or two) and click and read...you will not be sorry....

http://wronginalltherightways-travcat.blogspot.com/2012/07/9192-hours-of-hope.html

I could not top that one so I am not even trying today.

Happy One Year Home sweet girls!!!

Monday, July 9, 2012

Two sides of the same coin...

Sorry for the blogging break...

I can tell you exactly what happened...

SUMMER!!!

Activities, catching up on work after being gone for Henry's surgery, mini-vacation....all good!

Henry is doing well and gaining weight like CRAZY on the nighttime tube feeds!

But no Henry picture yet...

first I need to show you HER picture...


This is "Paisley" who was listed for adoption in Henry's country...she is 6 months old, like Henry was when listed...she has unrepaired spina bifida (from what I understand she can only lay on her side because of it) and will need major surgery the moment she hits US soil...

The Garner family has stepped forward in faith to make sweet Paisley their 9th daughter!!

Please click HERE to go to their Family Sponsorship page and bless them with a gift to bring this sweet baby girl home to the loving arms of family and medical care....

so that she does not have to see the other side of the coin...

like sweet "Porter" did...


Porter is now 6 years old...and a few weeks ago left his baby house...to be taken to a remote Stage 4 Institution in Henry's country for severely mentally and physically handicapped boys 5-25...

but Porter is NOT severely mentally or physically handicapped!!!

His Reeces Rainbow profile HERE says a mild mental disability and speech impairment and HIV+....

but a family who just adopted from his baby house says he talks up a storm and seemed cognitively normal...

an amazing woman who adopted her son from that same remote institution (it appears only 2 boys have been adopted from there through RR) says on her blog that he likely could not read (DUH! Neither could any of MY BOYS at age 6!) and/or could not answer their questions fast enough, so he was TRANSFERRED to a place that is truly horrific...

PLEASE go HERE to see updated pics of Porter and read about where he was transferred....

and then go HERE to see a video of sweet Porter dancing and playing at his baby house...

now picture him in a hot shed with NO TOYS and NO BOOKS and NO HOPE.....

just day in and day out of survival....wondering where everything he has ever known has gone...

maybe wondering what he did to cause this...

THIS IS NOT ACCEPTABLE!!!! THIS WILL NOT HAPPEN ON MY WATCH!!!

It is a blessing to adopt babies like my Henry and sweet Paisley so they never need to know the pain and horror of transfer...

but it is a RESCUE MISSION to go save a boy like Porter from YEARS OF LIVING HELL....

I will be shouting for Porter's family to come forward to SAVE HIM the next few weeks...

We have also donated our old minivan to Cars for Causes  and the proceeds of its sale will be placed in Porter's Grant Fund...

Please take a moment out of your day....

and really SEE the two sides of the coin of International Special Needs Adoption...

and give and share and pray as you can....

Henry says THANK YOU to all the caring American families who let special children like him into their hearts and homes!!!!