June 17...

Father's Day this year...

Our Anniversary every year...

I could not let the day pass without a big THANK YOU to the man who made such blessings possible...

I love and admire you more every day!!

LAST Day 8!!

We are outta here! Heading to the airport... A little nervous about how life with a g-tube will be...

But we can do all things in He who strengthens us!!

Henry says - see you in September CHOP for VEPTR placement!!

CHOP Day 7 - almost done...

Although Henry has all his lines out and is down to regular pain meds we are still in the PICU because the rest of hospital is full...

Oh and they just announced a temporary power outage in 5 minutes...

I will blog when we get released, hopefully tomorrow about noon so we can catch our flight home...

I will leave you with a pic of Sunday night dinner for my sweeties at home, can't wait to see them tomorrow night!!!

CHOP Day 6 - no longer sedated...

So this will need to be fast...

Henry is off the pain killer that was also a bit of a sedative...

So he was awake A LOT today...

And tried to pull his feeding tube down from the pole it is perched on...

I think he is feeling better...

Because now he is mad that he is not curled up under my armpit sucking on his bottle in a pitch-dark quiet room on a memory foam mattress...

So our Day 6 update is over...

As is the "he is drowsy and drops easily off to sleep" portion of this hospitalization...

Sleep better than I will!!

And Happy 8 months as an American citizen to Henry!!

CHOP Day 5

I did not want to be late posting again so I am fighting to keep my eyes open just to update all you Henry fans...

Nah... I am not that noble...

Henry is cranky and I have to stand next to him and hold his hand to keep him calm...

He just started being fed Pediasure through his g-tube, so hopefully hunger will be eliminated as a reason for his fussiness...

We will feed very slowly for the next 16 hours to make sure his tummy does not get too gassy, and then I get to start practicing on the kinds of tube feeds he will get at night...

It's funny, one reason I became a lawyer and have my babies at home is because I hate needles and blood and all things medical...

And God sends me Henry who has been hospitalized 4 times in the 8 months (tomorrow!) he has been home!! And I have to deal with feeding him through what is essentially a hole in his tummy...

God likes to stretch us...

Don't snap me Lord I am learning to bend with you!!!

Good night all! I am not sure how Henry is going to sleep in the upside-down position he has chosen at the moment... :-)

CHOP Day 4 (belated) - operation day!

What a lllloooonnnngggg day yesterday!

I was too tired to blog by the end of the day...I was nodding-off in the chair next to his crib by 9:30 last night...

The good news is that the intubation went MUCH better than back in April . Henry's airway is still small and physically difficult to deal with but there were not the extreme problems we dealt with last time.

His ears were cleaned out and his ear tubes replaced... Well, the left one was replaced, the doc could not FIND the right one, it probably came out with the major discharge he had once we got home... The right ear was also very infected so we are on antibiotics and the special ear drops for 10 days (again)...

The g-tube is in and this morning is doing well after a bit of extra bleeding yesterday..... I will be going to attend a "training" later today to learn how to feed him using it... We will do daytime feeding using the tube over the next 5 days until he can have puréed foods... This restriction is from the cleft repair, which also went well, but his mouth tissue was rather fragile. He had extra bleeding from the mouth as well that also kept him up in the OR for a bit longer than expected...

Once we got up to the PICU we had some challenges getting his pain under control while NOT suppressing his breathing....

And then they neglected to put in a second IV line for his antibiotics in the OR... The first tech who tried at the bedside could not get it in after 4 sticks (AARRGGHH!!)... The second tech finally got the line in his foot...

By 8 pm Henry was finally comfortable and that was when I started to crash... I was able to sleep from 9:30 until midnight, then Henry woke me up and I sang to and snuggled with him a bit and he went back to sleep... Then we slept again until 4am when Henry needed more pain meds... And then up for the day at 6am as the docs started parading in through the room to check him for the morning...

It is now 8am and Henry is sleeping peacefully at the moment!! The bleeding has really slowed down and his cleft repair and g-tube both look good according to the docs, they will try a feed through the g-tube later today...

I decided not to share a post-surgery pic just yet because he is still a bit bloody and "beat-up" looking, so instead you get a pic from yesterday, right before we went back to the Oar, playing and being silly with mommy...

I like Henry THIS way much better... Hopefully a few more days we will be back to this happy "normal"...

Since

CHOP Day 3... And a favor...

So Henry and I spent a LOT longer at CHOP than we planned on today to get him officially "cleared" for surgery tomorrow...

We had an ECHO, EEG, Cardiologist appointment, and blood draw that I did not know about until this morning!

The blood draw was rough (as usual with my little guy), and then we found out as we were about to leave the hospital that the tech somehow "missed" the order for the CBC... Which is possibly the most basic blood panel ordered, especially before surgery...

I was NOT going to put Henry through that AGAIN because of someone else's error...so the anesthesiologist agreed that they could take the blood AFTER Henry was "put under" tomorrow morning...

They are not dealing with some "newbie" special needs momma here anymore...

Will post later tomorrow, Henry should go into surgery about 8:30am Eastern Time...

Now the favor...

Ok I was wrong... favorS - there are 2...

First, please pray for Henry... That there is not a repeat of the difficult intubation from last time and that he has a QUICK and EASY recovery...

Second, go here:
http://onestepclosertohome.blogspot.com/2012/06/racing-for-orphans-with-down-syndrome.html?m=1

Go watch this video of the AWESOME Brady Murray who runs IRONMAN TRIATHALONS on behalf of the sweet children listed for international adoption on Reece's Rainbow....

And then VOTE OFTEN for him and children with Downs Syndrome and other disabilities all over the world...

My Chicago peeps know how to do the "vote early and often" thing, right???

I'll even reward you with a pic of Henry enjoying his pre-surgery "last supper" of his favorite food group...

Thanks for your prayers and support!!!

Day 2 at CHOP

After a bit of a restless night (Henry does not like sleeping in different environs), we headed to CHOP bright and early for a Urology consult...

We had been told that Henry's CAT scan revealed an undescended testicle that would need to be "brought down"...

But 2 different docs confirmed this morning that the elusive testicle is in its proper place... With a minor irregularity that our pediatrician just needs to monitor yearly to make sure Henry does not develop a hernia...

So we are down one procedure but still need a sedated dental procedure as expected at some point this summer...

Still, the testicular appearance deserved a celebration...

Many thanks to a lovely friend who is so supportive of or walk with Henry and who sent me a "virtual" Starbucks gift card...

Here is Henry with my mug and coupon for a FREE cup since they were out of the brew I wanted!!

Maybe I should buy a lottery ticket today too!?!

A big week coming, kicking off with "Monday for Marcus"

I had plans....

BIG plans for Marcus...

You see he is one of the last children who needs to find a family in a very special orphanage in Henry's country, an orphanage with a caring director that actually educates disabled children...

Until they "age out" at 17...

They get thrown out on the street with a handshake OR, in the case of someone in a wheelchair, like sweet Marcus, sent to an institution...

Where learning ENDS and day after day is merely survival...

I BEG you, go here:

http://melissa-roomatthetable.blogspot.com/2012/06/monday-for-marcus.html?m=1

Look at those eyes!

Read where Marcus would not allow his legs to be shown in earlier pics because he is convinced a momma will not choose him due to his disability (spina bifida)...

I wanted to do a "fancy schmancy" blog post with tons of pics and links...

But I had to leave the house at 5am to catch a 7am flight with Henry back here to CHOP... His cleft repair and g-tube insertion is coming up Thursday...

So I am blogging from my phone, which is not conducive to all the bells and whistles Marcus deserves...

But maybe his momma does not needs bells and whistles...

Maybe she just needs to look into his eyes...

Go click on that blog link I posted earlier momma...

Or go to www.reecesrainbow.com and type "Marcus" in the "Search" box on the top right...

Look into the eyes of a smart, sensitive, loving boy (i can put you in touch with a gal who visited with him for weeks and can tell you all about his personality!!) who DESPERATELY wants a family...

Yes, his legs don't work...

Henry's don't either...

And Henry can't sit up...

And Henry can't talk...

But my Henry is AMAZING!!!

Marcus is amazing too...

He needs to be here...

like my Henry...