Bubby at School

We grappled with the decision of whether or not to send Weston to pre-school this year.
Ultimately, we very concerned that he may have a speech delay and that pre-school would be the best for him. That way, if our suspicions were valid, he'd have access to the resources at the elementary school.
Best decision ever.
Within the first two weeks of school, he was talking more and CLEARER.
Using words to ask for what he wanted, instead of pointing.
And, he seemed to actually be playing with other kids in his class.
(Last year, every time I spied on him in daycare or went to pick him up, he was always playing alone, separating himself from the rest of his class.)

It took him a little while to settle in, but his teachers say he is doing well and they send us pictures every week of the fun they have.

This afternoon I spied my little guy being such a good daddy to a little baby doll.

Yipe! I've been caught taking pictures of his sweet tender heart.

Mama, I know you won't embarrass me!

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Choo-Choo!!

In case you haven't heard, Thomas the Train is where its at.
Thomas with his busting bumpers, fizzing fire box and pumping pistons have sucked both my children into his lame world on the Island of Sodor.
Saturday was the annual "Day out with Thomas" in Burnet.

We rode a passenger train led by Thomas himself, about 3 miles through the scenic Hill Country.
And when I say scenic, I mean the backyards of meth houses, laundry hanging out on a line, rust yards. Oh, and the nice wooded areas in between.

Number 1 Blue Engine

So excited to be riding a real train!

Suddenly too cool for Thomas

Enjoying the scenery

My Lovie.
Look familiar?

Left is 2 years old riding the Zilker Zephyr, BW
BW-Before Weston

We escaped before we were bullied into buying any more Thomas paraphernalia; alas I can't say the same for SnowCones.

Later in the day, we had a visit from Granny and Grandpa.
They have a grandbaby night, while B and I went out to dinner...not fast food.

That GrandPa sure is a bebe magnet.

In addition to our busy Saturday, we have been enjoying the steady, much needed rain and getting ready for HALLOWEEN!

Eyeball Wreath
I'm pretty proud of myself.
96 ping-pong balls!

A Day at the Park

Daddy Daddy celebrated the beautiful weather and took the munchkins to the Round Rock All Abilities Park this weekend. It is a truly amazing place. Designed so that kids of all kinds could play, no matter if they are in a wheelchair or special needs. Awesome!! They all had a blast!










Her face is hilarious. I feel this way too sometimes when I'm outside work.


Emmy and her heavy machinery





My big guy! He's loosing his "baby" features :'-(


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School Days!

August 26th was Emmy's first day of Kindergarten!!
School for REAL!
My princess was super excited about her first day.
(Bubby and I unfortunately did miss her first day due to hospitalization, but she had plenty of supporters and photogs to make her day special from us)

She picked out her first day outfit and her backpack...that lights up!

In her classroom at her desk.

Bubby did get discharged from the hospital the week of August 26th, and  we hit the ground running as soon as we got home.
It's just a busy time of year!
I apologize for the lack of updates between then and now.

Bubby started school on September 3rd.
He is at the same school that Emily attends, in a teachers' children's program.

It's a little too early for his liking

Not nearly as excited as his sister was

After his coffee on the ride over, he perked up a bit

My loves!

Can't wait till the chef starts cooking for real!

His first week was a little rough, but we have been assured by his teachers that he is doing better and the melt-downs are much less frequent.

We were also concerned that he was a little developmentally behind, mainly in speech.
His teachers have noticed it, too; but I cannot begin to express how much more he is saying and how clearly he says it!
Just a few minutes ago, he said "Daddy, I'm hungry." 

WOW!
I don't doubt that he may have tried to say this many times before, but it came out so garbled and was just gibberish.

Way to go, Bubby!!

The BEST thing about this school business, is that they come home exhausted and bedtime is soooooo much easier. Muwahaha!

Emmy trying on my sunglasses

Posing like this...totally her idea.

Screeching Halt

Sorry for the delay in updates. I had the chance to go to bed early last night, and I jumped at the chance.

So, Weston did great during the procedure. He got one unit of blood intra-op and has kept up his hemaglobin since then. The doctor said she actually saw the contrast dye leaking from the veins into the intestine. A first for her. Yay. Another unique charm.

Evidently he spiked a "fever" overnight and they jumped on it, doing blood cultures and heavy duty antibiotics. Vancomycin. Damn you, vanc. How many times are we going to do this. Of course, he doesn't have a PICC line because despite my advocating for one, its too "risky" for a short stay. Well, 6 days and counting in the hospital is not what I call a short stay. I digress.
The vanc destroyed his IV and he had to get another one plus a blood draw from his foot bc all his veins in his arms are shot. Go figure.

So, because of this temperature spike, he may not be able to go home tomorrow evening as we all hoped. Ugh. Always something.

He got downgraded back to the liver floor this afternoon. He was sleep and cranky most of the day but perked up enough for a Dino rawr.






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Power of Scrub Pants

You see these pants? They're magic. It just so happened that I packed them as a last resort because I was grasping at straws finding clean clothes for this adventure. Busy weekend, no clean laundry but clean work clothes kind of situation.
But, I am glad I did. These are universal "surgery" color for hospitals. Other than being really comfortable, they have had the added bonus of giving the silent message to some people, say taking care of my son that normally wouldn't be so helpful, that "I am one of you. Don't give me that lay person song and dance." All without me having to say a word.
Magic pants.
My pants broke down a HUGE barrier with an Ice Queen Receptionist that we've had not so good interactions with in the past. Today, she let me right back to the recovery room to question nurses face to face about where my son was, why its been 5 hours and I haven't been updated. >:-(
Aaaaaand just got another update as I'm typing this. **Magic Pants**

Anyway. They took Weston at 0830 and told me it was going to be approximately 6 hours. I went back to his room and took a nap...plagued with very vivid dreams that I was schizophrenic and was having a psychotic break. Lovely. Maybe it was that they were in real life torturing some kid down the hall, but GOOD. LORD. I can't escape the crazy even in my sleep.
I went outside for the first time since 3am Tuesday morning. And I ran into Ws liver doctor in my rambling. He had just been in the room with him and said everything was going well. The Radiologist found places that were bleeding and was still working at scarring those down. Now, as it was explained to me this is the problem: his portal vein (big, important vein) is occluded for some reason. As a result, his body has formed "collateral" veins to take the place of the portal vein. (Awesome! Way to go!) The location that they have sprung up in is the loop of bowel that was connected to the liver during the Kasai. (Boo! what were you thinking?!) Well, it's high pressure, even though its venous. And these collateral veins, aka varices, aka intestinal hemorrhoids (that one is mine) leak into the bowel thus causing the blood in the poop. This must have been happening for a while and at a much slower rate, bc we haven't seen it reflected in his poop and his hemaglobin has been slowly trending down for some time. We had attributed the low HGB to eating paper as an infant, dirt, outside pizza and sustaining life on milk.
Once they scar this set of collaterals down, new ones will form. THAT'S OK! Ideally, they will form somewhere else other than the intestinal loop and problem solved. Alas, the intestine is a very attractive and sexy place for these varices to form, so there is a chance that they will form in the intestine again and somewhere down the line, he'll have to have intervention again. Which in Weston speak, means "I'll be baaaaack."

So, for now, me and my magic pants wait.

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Book Deal

Yes, we are searching for a book deal featuring Weston and his rare, weird liver crap. Oy!

MRV showed varices (think varicose veins) at the site where his surgeon made the roux-en-y bowel loop during his Kasai 3 years ago! Also, another large vein is partially occluded or narrowed. Of course, this is rare. Like 3 kids a year. Shall we take a walk down rarity lane?? BA-1 in 18,000 live births; B+ blood type- ~8% of the population; undiagnosed bile duct obliterating illness- him and like one other kid; obscure GI bleeding at RY Loop site- 1 in 3 kids per year.
All I'm saying is he better be conversely lucky as he is unlucky. Lottery winner...professional athlete/dinosaur impersonator/Thomas the Train watcher.

Sooooo, tomorrow he will go to Interventional Radiology and they will scar those varices down which will keep them from bleeding (like some varicose vein surgery) and maybe see if they can open up that narrow vein.

I am happy to report that he has been holding his hemaglobin at 10 (Darn near low-normal) for 24 hours. Woohoo!
AND guess who got to eat real food?!



Yay, Bubby!! First time since MONDAY at noon. Hospital food probably never tasted so good.

On the home front, Ms. Lisa has been a God-sent helping us with Emmy. She got her dressed and ready to go for MEET THE TEACHER NIGHT!!!!



How precious is she?!
Her Kinder teacher is Mrs. S! So exciting!

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