RollersInVegas

Where are the pictures Kathy??

Well...they're in the camera...of course! I'll pull them out tomorrow...I promise!

We had a good day today. Our Katie Beckett case worker came over today. AND we re-qualified for the program....so, we're still in!!! (What this program is...is a secondary insurance. It actually goes through Medicaid, but it isn't based on your income, it's based on Isaac's health. And, well...he's considered disabled at the moment...so, this program helps pick up some of the co-pays that our insurance doesn't. WHAT A BLESSING IT HAS BEEN! I am SO thankful for Terri for making sure I filled out my paperwork and we qualified!)

After our meeting with Erin, we had to go to TWO pharmacies and then the grocery store. We had a little dinner (well, we did....Isaac did not...just tube feedings for him). We took a walk around the neighborhood with our sweet neighbor and Isaac has been fast asleep ever since!!!
Joe's home, the big boys are upstairs watching a movie, and the Olympics are playing in the background....oh, the peace and quiet of our house at the moment....HEAVENLY!

We're alive and well...
my computer cord broke last night...so, it was off to the apple store today to get a new one! (and a few other things that Joe "NEEDED"...)
Isaac had to stay on the O2 today...but, with that extra support, he only wretched once. His heart rate is still a little too high for me and he's sweating ALL the time (and he's ONLY at rest...that boy isn't working on going anywhere or using any extra energy). He will STILL not let me feed him anything.

Eli has spent the last two nights outside screaming for the aliens to come down. We went to the book store today to find him alien books....but, couldn't find any kid ones that appealed to him and the adult ones were too wordy and not enough pictures.

Chris got a new computer star wars game this week....so, that's all he's doing (and stinking up my house with his body odor!)

We're headed off to bed now....gosh....we're getting OLD!!!

Well...I'm trying to upload new pics...but, my camera is taking FOREVER to load!

So...I'll just tell you about our day!

It's OVER....HOORAY!!!

Seriously, Isaac is doing awesome! He is off the O2 again during the day. I even started up his MCT oil again (for the extra calories) and he didn't wretch or throw up once today!!! He even put his feet on the floor when I put him in his jumparoo...although...he was a little quick and put a little scratch on his new fancy glasses (that stinker!). We've tried everyday for the last few days...and he will not eat any baby food. But, he is cutting new teeth (like 5 or 6)...so, that may be the reason. Our pt and ot come over tomorrow...they are NOT going to believe how he's rolling over and getting that butt and belly off the ground.

Now...Chris had his High school orientation today. I can't even believe that this time has come...he's so excited!!! He's spending the night with a friend tonight, so Eli's camping out in our room.

and for Super Eli....he's convinced there are aliens in the sky. He keeps going outside (seeing all the planes) and needs some ideas on how to get the aliens "down". I'm not sure what he wants to do when he catches one....but, he's serious...he even got on the computer and tried typing in "how to get aliens down.com"....he's such a ham!!! He's leaning on me now...sucking his thumb, barely hanging on...but, reminding me to ask you about the aliens (so call him or leave me notes for him). I hope he can sleep with all of this worrying on his mind!

So...that's about it. It's 10pm...and my Joe is STILL at work (urrghhh)...why must we need money for food and insurance...why couldn't we all just live on love??
I feel horrible, but...I'm taking Isaac up to start his last feed and I'm going to bed...the time change is catching up with me and I'm POOPED!

WE MADE IT HOME!!!

So...I'm sure you're waiting to hear about our adventures home...so, here they go:

My dad takes us to the airport. We get there TWO hours before our flight. I even check the bags at the curb with the sky cabs...and we park and go in. NOW...we're in the security line. Here's what we have to put in those bins to be x-rayed:
1. shoes
2. eli's back pack
3. baby bag
4. Isaac's meds and feeding pump
5. xbox
6. the suitcase the xbox was in (like they can't see it through the suitcase??)
7. carseat
8. stroller
NOW WE GO THROUGH...finally. Then, they have to wand Isaac and swab the O2 concentrator...so, I let dad hold him through all the testing while I pack up ALL that junk that we have to take on the plane. FINALLY, we head to out gate to get our pre-boarding pass and then head all the way down the terminal to eat. While I order food, dad takes Eli to pee. We eventually get our food and sit down to eat. THANK GOODNESS....I look at my watch and it's 5:20!!! They're getting ready to board the plane. I have to stop by the bathroom, wait for Chris to go also, and we RUN all the way down the terminal. THE plane is ALREADY BOARDING!! YIKES...I give dad a quick hug and a cut in front of everyone and tell them that we HAVE to get on now...I have too much equipment with me. We get to the plane, I tell Chris to take Eli on and save us two rows. I have to take Isaac and his carseat and separate it from the stroller, close the stroller, hold him in the seat, pull the O2 concentrator, AND carry the baby bag!! We're getting on the plane and the pilot is such a sweetie and he actually takes Isaac for me and we find the boys!
Once on the plane, a lady asks if she can sit with the boys (they are sitting in front of me). I say "YES"...because she looks normal! Then, she see's Isaac and asks about the O2. She was actually at a convention for Turner's Syndrome and genetics, research...and she is affiliated with researchers at Stanford! We talked off and on during the flight and I've got her card to get more info from her. (How cool was that!!) She took good care of my boys on the flight!
OF COURSE there was the cutest little girl sitting behind me that SCREAMED the entire flight. She's like 3 or 4 years old...and she just shrieks! It's a good thing that I had already taken an aleve!
I almost forgot....Isaac wretched the entire flight! Well, he did fall asleep for about an hour....but, for some reason, he was having a hard time flying. Poor little guy!
Ok...now we've landed...and I text Joe (because he's coming straight from work to pick us up). We wait for the entire plane to empty out before we get ALL of our junk and get out of the plane and head for the baggage claim. I set the kids on the chairs and I'm pulling our THREE HUGE bags off the carousel. Then, while the kids are sitting and watching the bags...I go and get a cart. THEN, I load ALL the bags (that's three huge checked bags, one back pack, one small suitcase, one baby bag, and one feeding pump bag)....all on the cart...WHILE people look and no one offers to help (can you believe that!!!).... And...where is my hubby...LATE! But, after everything is loaded, I start giving Isaac his meds....and my sweetie appears!!! Thank goodness! We head to the van and get home.
Well...you can imagine what state my house is in without me for two weeks and Joe living at work. Joe had to hold Isaac for me while I vacuumed the living room floor so that I could set him down. (But...I cleaned hard last night and today....it looks great now!) I even did a few loads of laundry...AND all without a NAP! Who's the man???

Well...that leads us to tonight. I cooked dinner (not so good, but a good attempt)...
Eli took a nap today, Chris went to a friends house and to scouts...and Joe made it home.
It's time to take Isaac up to bed and feed him one more time (Oh...and he stayed off O2 today with only one blue episode) and we'll update with pics tomorrow!!!

Mom thought that Isaac would "MIRACULOUSLY" start jumping

He showed her! I'm not sure why he always wants to look up

at the ceiling!
OK...here, he got stuck under the couch. He's turned into a rolling machine!
Help me out...help me!!!

A little bit of Eli.....
Do I really need to say anything??
ahh...this is Jack (dad's pride and joy). Yes..he's a boy...but, I couldn't

He didn't mind!

Ok...another one of Eli wearing Papa's glasses...
OH MY GOSH...another miracle has happened!!! Isaac is putting weight on his forearms, holding his tummy off the ground, and picking his bum up and on his knees!!!

Ok....this is Isaac...notice the O2 machine...
this is Isaac...trying to wrap himself in the 25 feet of tubing...also almost pulling the machine onto him...oh, that would have hurt!
too sweet!

That concludes our weekend!

I haven't packed up a THING yet...and we fly out tomorrow! YIKES!

Chris is alive and well...

but, I need to get some sleep...so, I'll post on Tuesday!!!

***Prayers are needed for Elaina, Elijah, Johnathan....oh, just pray for all my heart babies...and us parents...that we stay sane, the kids stay "healthy", and we all have a peaceful night's sleep~!