We are just a family of five...three boys, a mom, a dad, a hamster, and dog. Welcome to our crazy world. Our adventures will make you laugh, cry, and pee in your pants...
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Monday, June 30, 2008

Sorry that I've been a "bloggin' slacker"! But, we made it home (in record time) and we're ALL alive and well! Believe it or not...nothing crazy happened. We made it out of the RMH at 6am (yes...that's right), the kids packed up, everyone dressed, breakfast eaten, feeding pump started, meds for the day all drawn and in little baggies...I must say...I've got MAD skills! Isaac was a champ for the ride...taking a few naps, but mostly just watching his show. Eli slept MOST of the time...and Chris talked my head OFF!

The fancy glasses weren't ready for us to take home, so we should receive them in the mail this week! I can't wait! He's wearing his "spare nerd glasses"...but, also trying to eat them every chance he gets. I've been letting him have breaks from his "no nos"...and he takes FULL advantage of that time...trying to stick everything in his mouth (even those little toes!)

My poor little Joe is working his bum off (again)..I know..it feel off a long time ago, it grew back...and now they're trying to work it off again!!!

AND...I have orders to get out this week...whoo hoo!!!

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Friday, June 27, 2008

Just a quick update...

Everything checked out at our appointments today. His mouth looks good, but he needs to keep the "no nos" on for ONE MORE WEEK! GEEZ!! They couldn't do his hearing test because he was a little grumpy pants...and the ENT said one ear looks great, but she couldn't see the tube in the other ear (that one that was bleeding)...so, she told me to keep adding the antibiotic drops for another week...maybe it's just clogged with dried blood...yuck!

**Yesterday was Kate's birthday...and I just wanted Krista to know that WE ATE ICE CREAM...but, I forgot to take a picture...but, I'm still looking for some to email you!

**AND...we got to eat dinner with Andrea, Dan, Drew, and Ava....YEAH!! They have escaped from the hospital...and I was THRILLED to celebrate with you guys!!!

**so...I must run...I'm trying to get this room packed away tonight (well, as much as I can), so that we can get an early start in the morning!!!

VEGAS...here we come!!!

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Wednesday, June 25, 2008


This was sleeping beauty yesterday
(those are little elephants on his cheeks!)

This is little Isaac bouncing and watching his tv
(they don't have tv's in the rooms at RMH...but,
that's fine...he doesn't mind the little screen)
Notice the cow...it's the flashlight I bought yesterday to
see the inside of his mouth (it MOOs everytime you turn it
on...he looks at me like I'm crazy pointing it in his mouth!)

He can STILL touch his toes (even with the No Nos on)...and
those toes can even FIT into his mouth!

Look....he can even bend his leg
(he's getting a little fancy on us!)

What are YOU looking at??
I don't know Isaac...what are YOU looking at??
(I hope his glasses are ready before we leave...he NEEDS them
to tame that crazy eye!)


SO...I have TWO important things to tell you:
FIRST...the nurse called me back and told me not to worry about the stitch. If it didn't bleed, and I don't see a hole inside of his mouth...he'll be ok to see on his Friday visit (thank goodness!)

Second...Isaac hasn't POOPED in a WEEK! He's been working on it for two days now...and he just isn't having much luck! So, I went out today and bought him pear juice and a baby laxative...but, I just gave him both and NOTHING...
I'm AFRAID when he finally goes...that's going to be some ROTTEN poop...you'll probably smell it all the way to TEXAS! (sorry guys!)

Mandy's bring the boys to me tomorrow...and I can't wait!!! It's perfect timing, they're doing "kids cooking" in the afternoon, and kids crafts at night...and Friday we'll do something before Isaac's appointments. AND...it's time to start DE-ACTIVATING them...they think they're on PERMANENT vacation...and Eli is actually suppose to be in school right now..he's skipping!!!
(they can't kick you out of kindergarten...can they??)
just joking....I "pre-arranged" it all...he's good!

Hope everyone had a good day!!

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Tuesday, June 24, 2008

Not much to report today. Isaac didn't sleep very well last night...we was having trouble swallowing all that saliva that he's producing! Mandy brought the boys to see us today...I MISS THEM TERRIBLY! Thanks for bringing them Mandy!

OH YEAH...on the way to the store, Isaac took off his No Nos...and when I got there...2 minutes later, there was a STITCH on his chin! A STITCH HAD FALLEN OUT!!! BUt, there was no bleeding...so, I hope it was just already dissolved and ready to come out. SO...like the bad mom I am...I have to call the nurses AGAIN and ask If I've harmed my baby (well...he did it...I just couldn't reach him in the front seat!)

He just knows how to wiggle out of those things and then get the other one off....they are NO MATCH for MASTER ISAAC!~

We don't have any plans for tomorrow...so, I think we'll try and sleep the day away!!!

oh..I am SO READY to get home!!! Here's hoping my little man didn't mess up the incision...and we ALL sleep good tonight!

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Monday, June 23, 2008

So...here's what Isaac does all day. He's watching Yo Gabba Gabba...and does it with his legs in the air!
moving in for a closer look...
ahhh...now I can see it...or can I...I'm not suppose
to be able to see up close!
oh...now I can touch it...much better!
See what she did...she put the "no no's" back on me...
she's SO mean!
But...I'm still good looking...even with "No Nos" on my arms,
a canula up my nose, fish on my cheeks, and my mouth
wide open blowing out STINKY breath!
ok...so here I am again...just trying to get a closer look!
a little closer...
I'll break my back if I have to...just to get a good view!
we call it the "Isaac butt lift"!!!

He is the craziest kid I've ever seen! He's recovering so well...he doesn't cry...he's kept the no no's on all day and doesn't even complain. He can take them off now. He wiggles out of one, then uses the free arm to pull the velcro off the other one...he's a stinker for SURE!

About the ears...the nurse called me back and didn't seem too concerned, but she did call in some antibiotic ear drops for us to use until our post-op visit on Friday (that's why we're still in town). We meet with ENT at 1:00. Plastics at 1:45, and he has a hearing test at 3:00...then, I think we'll pack up the car and pull out Saturday morning...oh...I DREAD it!

I went to medical records today to get his operative reports and they actually had his immunology labs back (I thought it took a few weeks...maybe they're just SUPER-FLY fast here!)...anyway, they were MUCH better...here's the break down: (these are all t-cells)

CD3 were 498 should be (1500-5400) and are now 1057
CD4 were 433 should be (1000-3600) and are now 921
CD8 were 58 should be (570-2200) and are now 136

and there are a couple of other numbers...but, I don't know what they measure...but, these numbers WENT UP!! That means Isaac isn't on his death bed, that I don't have to make a bubble for him (although, he's still below average, so severely immune compromised still)...but, it just gives me a sigh of relief!!! YEAH FOR ISAAC!!!

I tried taking him off the O2 today...but, he started wretching...so, back on it went. He's such a sensitive little booger!

Mandy is bringing the boys to see us tomorrow!!! I can't wait. I was talking to Eli on the phone today...and I had a reality FLASH...oh my GOSH...I HAVE TWO MORE BOYS! I've just spent SO much time apart from them this year...and all the focus has been on Isaac....I almost wanted to cry. He's such a cutie pie...and I can't wait to show both of them off to everyone here!!!

Well...my little man is FINALLY asleep and I'm just waiting for his feed to finish and I'll hit the hay...

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Sunday, June 22, 2008

YOU are NOT going to believe who we got a call from today.....
RONALD McDONALD HOUSE...they have a room available for us!!! (now...we've been on the waiting list since March, so...when they called me last week and told me there were no available rooms...I was certain that we just wouldn't get in this trip!!!) SO...they told us that we could check in at 3pm...and I had to take Joe to the airport at 6pm...so we hustled and got our things packed up from our MOTEL and head to RMH!!

SO...we're all moved in, Joe's at the airport as we speak, and Isaac just fell asleep!! What a relief! I feel SO much better staying here this week than at a MOTEL by myself with Isaac.

BUT, guess what happened today. I was rocking Isaac to sleep at RMH (in my rocking chair that I BROUGHT from home...because I'm COOL like that)...anyway, he wanted to switch arms, and when we moved him...blood was all over my arm and his EAR! (NOT MOUTH!) hhmm...we cleaned his ear and my arm...and called and left a message for the nurse practitioner...but, Joe thinks the tube may have fallen out! YIKES! Wouldn't that JUST stink!

They haven't called back, and if it does it again...I'll just walk over to the hospital and make someone look in his ear.

So, I imagine we'll have to go into the ENT clinic tomorrow and let them check it out. I hope it was just some FREAK incident...and they don't have to re-do the procedure.

That's about it. Isaac is just awesome...the big boys are bugging Mandy to death....and poor Joe had to go back to work:(

But, I am SO thankful that the RMH house had an opening and Joe was able to help me move everything over!!

I'll post tomorrow and let you know if I find out anything about his little ear!

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Saturday, June 21, 2008



So...there you go. Our week in review. As you can see from the last few pics...he's looking great, kicking like a mad man, and will not keep things out of his mouth! (even with the no no's on!!)

We were able to get some naps in today...but, we're hoping the little man sleeps ALL NIGHT LONG!

Thanks for checking on us! I think we're going to make it!

We stay in town until next Friday for his follow up appointments. Joe has to fly back home tomorrow:( and...Mandy will keep the big boys (as long as they behave!)

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Look at the time...it's WAY too early...but, the resident just came by and said that Isaac looks GREAT! He's still on the O2...but, because I brought it all with me, they are willing to DISCHARGE US THIS MORNING!!!

I came to relieve Joe this morning about 4am....now I have to call him and get him back up here! YEAH!

SO...we will sleep the day away and I'll post pics tonight.

But, Isaac isn't too cranky. He kicks his feet and tries to pull out every line attached to him! He even tried to put his foot in his mouth (the one with the red light on it for the sat monitor)...he needs "no nos" for his legs too!!!

Once again....this little man surprises me!

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Friday, June 20, 2008

I have taken some REALLY cute pictures...but...the cord to connect the camera to the computer is with Joe...and my STINKIN' -I-phone isn't sending my pics....hhmmm.

So...I'll just tell you how he's doing for now. HE"S GREAT! I was able to clean his mouth and get all that gunky blood off...that looks SO much better. His tongue is going down slowly...he can almost close his lips over it! YEAH FOR ISAAC! He hasn't needed any morphine since noon...just taking Tylenol with codine. He licked some ice cream tonight...and we've started back mixing the milk with the pedialyte and he's tolerating it well!

Our nurse today was AWESOME...and that makes all the difference. (She said we'll get her again tomorrow)...I just hope our night nurse is awesome too! Our roommate got discharged...I hope they leave that bed clear tonight!

The boys went to Six Flags today with Mandy...Eli wasn't tall enough to ride all the roller coasters that he wanted...I sure hope they stuffed his shoes with socks so that he could ride!!!
I miss those stinkers!
Joe should be waking up soon to bring us dinner. BECAUSE I'M starving!

I can't take Isaac roaming around yet...I'd have to drag the IV pole, the O2 tank, and the pulse ox...so, we're just hanging out in this room. BORING! But, I did take the television away from Isaac when he gets cranky so that he will fall asleep...he'll hang on all night if I keep Yo Gabba Gabba playing!

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Well...good morning. YOU KNOW there was no sleep in this hospital room last night! I stayed until about 4am and then Joe took over so that I could go and sleep.

He's not too cranky...just looks miserable. They did finally come by and take that stitch out of his tongue...but, we aren't leaving today because the tongue is too swollen (they don't want it to block his airway). They are starting him on steroids to help with the swelling. I asked why the tongue was sooo swollen...well, they didn't just clip his tongue, they cut it and sutured it in place in the back! (not sure exactly what that entails...but, I'll carefully read the surgical report when we are discharged.) He's tolerating his pedialyte great...so, we'll slowly add his milk later today. His arms are a little swollen from the "no nos"...but, I've taken them off, massaged them, and haven't put them back on (he's keeping his hands away from his mouth).

And yes...I forgot...they did put tubes in his ears also...
So...when we leave Stanford, he'll have: new cheeks, new tongue, new palate, new ears, and his fancy new glasses! What a productive two weeks!!!

AND...I've dropped his O2 down to 1/2 liter...so, he might surprise us and not need it after all!!!

OK...I'll be good and post again tonight! (maybe even with new pics) Thanks for checking in on us!

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Thursday, June 19, 2008

So...here's Isaac this morning getting his bath before surgery!



and...here's what we saw after surgery!



The plastic surgeon said that once he got in there, he not only had the cleft to repair, but he needed to clip his tongue, AND the sides of his cheeks were webbed! (that means the skin on the inside of his cheek was fused to his gum line...his teeth would not have been able to come through in the back) wierd?!!?

So...Joe's back at the motel taking a nap (because he had to take the 5am flight to get here this morning). Isaac has a fever (even on the Tylenol...but, hopefully that will cool off soon...that's why he's got the wet rag on his forehead). He gets morphine every hour (HOORAY!)...
Right now...he just had the morphine and he's awake watching Yo Gabba Gabba. OH...and that black thing on his cheek...is a STITCH! They put a stitch on his tongue in case there are airway issues...they can pull his tongue out. HIS TONGUE IS ATTACHED TO HIS CHEEK---wierd again!

We're sharing a room...poor other little guy...I hope that Isaac lets him sleep. We're hoping to get outta here tomorrow. He's on 1 liter of O2...but, I brought all that with me anticipating that he'd need it for a little while.

Thanks for checking on us!

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Kat just called. She said that Isaac just went back and now her and Joe are going to get something to eat.

Now for Chris.... He asked if he could call Kat. I told him he could text her. So when Kathy calls she wants to talk to Eli about yelling at the other boys. It seems Chris decided that he was going to text Kathy and tell on his brother. And he makes it look like I sent it. That boy is just like me. I'm going to lock him in a room with no video games!!

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Okay. It's 12:45 am. We just got in. I have to tell everyone that the boys loved the drive in. They made it thru the first movie (Kong Fu Panda). Ten minutes into the second movie, Chris looks over and asks if we can go home. Now the 20 month old baby is AWAKE in the back seat, Eli and Seth are sitting up in the back of the other truck WIDE AWAKE and Chris is asking to go home. So we make the little one's pack up so we can get Chris to sleep. Now they are all running around, eating ice pops, and playing just to keep Chris awake. And of course my husband is encouraging it. We will TRY not to bother you Kat today, just keep us updated! (yes Kat, Eli takes his meds daily!)

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Wednesday, June 18, 2008

I'll post pictures tomorrow...while I'm just waiting for my baby to come out of surgery. Today's pre-op was fine. That's all...just fine. Of course they wanted blood work...and I told them it was hard...but, do they believe the moms...NO..they do not. After 4 pokes and no success...they sent us from the plastic surgery clinic across the street to the hospital where I asked for two "pokers" that we've had before...and Maria got some blood on the first try!!! YEAH!! They weren't able to get enough blood for his immunology panels....but, they said that they'll pull those while he's asleep.

So...after FIVE pokes...the necessary labs were drawn...and surgery is ON for tomorrow at 10:30am!!! We have to arrive at 9am. I get to feed him his 10pm milk feed and I get to feed him pedialyte at his 6am feed...so, he won't be hungry at all while we're waiting to go back. But...about that pacifier...he hasn't given it up yet...and I just hope they give me enough versed to keep him asleep this week!!! It's going to be LONG! They also told me that he'll need to wear "No Nos" until next Friday when we have our post-op visit...then...they will tell me if we can take them off. HOW IN THE WORLD am I suppose to keep my little man happy with NO pacifier and NO NOs on his arms???? I wish they'd just put him in a deep sleep for a week...and when he woke up, he'd be ready to go!

I haven't talked to my Joe ALL DAY! (because he's working his bum off!)...but, he's scheduled to take the 6am flight in the morning and he'll be able to see Isaac before he goes back. He also gets to stay with me until Sunday night...and I AM SOOOOOO GLAD!

I went to visit Mr. Drew today...too cute!!! and was able to see old nurses and friends....and on my way home...I stopped by Olive Garden!! I think I've already gained 10 pounds while I've been here!!! (oh well...Joe already bought the cow...he's stuck with it!!!)

and...do you need a funny story??
On the way up to California...I was a bit snappy with Chris. It was hot, we didn't get much sleep, I had to pack everything the night before...I was just stressed out...but, not to mention that it's not the perfect time of the month for me to be cheerful. Well, after snapping at him in the car...I apologized for being such a grump and told him how I just had a lot on my mind and "it wasn't my happy time of the month"....and he said..."oh yeah....you're in heat huh?"
So...yes Chris...I'm in heat...so don't mess with me!

I know that was way tooo much information...but, that's what it's like talking to Christopher...you never know where his silly conversations will go!!!

As you can tell from Mandy's pics...they are having a BLAST...and it will take weeks to de-activate them!

Thanks for checking on us...and I'll take my computer to the hospital tomorrow to update!!! (and my camera for lots of pics!)

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So we went to Chuck E Cheese today. The kids had a blast. Then we came home and I MADE the kids (not Chris) take a nap. Now that they are rested, we are going to take them out tonight to the drive in!! And by the way, these kids eat about 30 ice pops a day!! We should be home around 2 am so I think we'll stay home to play games tomorrow. We love and miss you Kathy!! Kiss Isaac for us.

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Tuesday, June 17, 2008

**Another SUCCESSFUL day!!!

First off....let me tell EVERYONE that my sister keeps her air conditioner on 78...I keep mine on 68...she's trying to KILL ME!

Now that I got that off my chest...we're all unpacked in our MOTEL (not hotel this trip) and little man is asleep. The Ronald McDonald House is full, but they gave us a discount at a MOTEL...but, it's got everything we need...so, we're grateful for the discounted rate.

I got to meet Andrea, Dan, and little Drew! YIPPIE!! What cutie pies. I'll stop by and visit with them again tomorrow after we have our pre-op appointment.

AND...I went to the fancy pants eyeglasses store (wish you could have come with me Andrea...you could have saved me!). I SPENT A SMALL FORTUNE in there! They just had the cutest glasses (and ABSENT-MINDED ME..forgot to take pictures!). But, I chose "HANDMADE" wire framed glasses from GERMANY! They are little circles, have those arms that circle around the ears (those seem to stay on better) and they are virtually weightless...he didn't even try to take them off because he couldn't feel them!!! AND...there's a TWO year warranty on the frames and lenses!!! So..he can eat away!!!
They were worth every penny! I told them how long I'll be in town...and they are trying to get them in before we leave next Saturday so they can fit them just for Isaac's little head!!! I'm SO EXCITED!! I just wish I would have thought to snap a pic!

And it's been such a crazy week...I didn't post a picture of my mom or tell everyone that she turned 80 on Monday (just joking...she's ??) and we get in trouble if we post her picture...so...BELATED BIRTHDAY MOM...I LOVE YOU TO PIECES!!!

And thank you Mandy for watching my stink-pots! (please don't let them melt!)
And thank you EVERYONE for your prayers and well wishes for us...I just HATE being back at a hospital...so, I hope this trip is the shortest and sweetest and we're home next weekend as planned!

ah...one more thing I forgot to tell you. One of my favorite places to eat here, Celia's, is only ONE mile from this motel. SO, I put Isaac in the bugaboo (that's my fancy pants stroller) and we walked (well, he slept) and I went to pick up my fav mexican food and walked back and I ate IT ALL!!! AND...already took a BATH!!! Can you believe that in all this craziness of the last few days...I was able to get some goodies in!!???!!

Ok...I'm outta' here...I've got to check on my babies!!!

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pics



Kathy is at Stanford and the boys are in Sacramento having fun. Here are a few pics from our fun day. And yes Kathy..... I will turn the ac down to 50!! :)

Mandy

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Monday, June 16, 2008

WE MADE IT!!

It took us NINE hours...with about TEN stops (not really...but, that's what it felt like)..but, we made it!!!

Seriously, there was one time where I had to pee SO bad....we made one stop and there was a BUS full of NUNS! (seriously). So, I wasn't about to wait in that line...so, I stopped at the next clean gas station....and when I walked in, there was a sign on the door that said, "OUT OF ORDER for cleaning!" Now...we're out of this small town, and I had to wait AN HOUR to find another suitable place for to sit my bum on! But...I made it...no accidents...no "side of the road" stories to share!!!

Isaac didn't cry or fuss or SLEEP once! He's so amazing! He just watched Yo Gabba Gabba the ENTIRE time! Eli slept for about half the trip...and Chris talked my head off in the front seat!

I'm going to miss those stinkers! But, Mandy will (hopefully) take good care of them.

***Right now...as I'm typing...Isaac is rolling ALL over Mandy's floor and trying to do the army man crawl to her!!! I can't even believe this!! (and he's trying to lay a stink bomb at the same time...fyi!)

Tomorrow...we'll drive the two hours to Palo Alto (where Stanford is) and try to get to the swanky kids eyeglasses store I found....Wednesday is pre-op.

No worries...I packed the laptop and will update often!!!

and just so that EVERYONE is clear on this....I have the MOST amazing husband. I didn't post a father's day post...but, my dad is amazing...and my Joe works SO hard to make sure our kids have every advantage in this world. (and he's not bad looking either!)
I love you JOE!!!

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It's Monday morning (EARLY) and we're packing up and heading to California!

I'll post tonight and tell you how the trip went!

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Friday, June 13, 2008



Eli had a GREAT birthday!!! The kids were PERFECT at the mall, ate their lunch, had fun with their bears, and had cupcakes before we took them home. Joe didn't come home until 8:30--so, we had his birthday cake and presents PRETTY LATE! But, he LOVED everything...and his new Rock Band game and guitar was a hit...battles lasted for the next hour!!!

OH...those pics of Chris are of him opening his report card. Now...he did horrible on his English exam...but, he ended with all A's and B's for the year....YEAH Chris!!!

Now...for your viewing pleasure (as if I haven't taken up enough of your time)....Isaac LOVES ice cream...take a look! (and sorry about the noise...the rock band battle was going on in the background!)

We love you all...thanks for all the Birthday well wishes for Eli and the sweet words for Isaac (as always!)....we're so thankful for ALL OF YOU that keep up with us!!


video

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Thursday, June 12, 2008




Well...that montage just about sums up our day. All the snot suckers came in the mail...Isaac loved trying them all out! He's doing alot better today (as is Eli)..thank HEAVENS!

We ran errands all day trying to get last minute things ready for Eli's birthday tomorrow, father's day, and our trip to Stanford.

Here's tomorrow:
(Eli's SIX YEARS OLD....WHOO HOOO!!!)
8:30--take Eli to school
9:00--pick up portable O2 concentrator for our trip
10:00--pick up Eli's cake and cupcakes
10:30--run BACK to EB games (because Chris wants to get him ONE more thing!)
11:20--pick up kids from school
proceeding directly to the mall for a birthday lunch with a few of Eli's friends...where we will then take them to Build a Bear (Eli's ALL TIME FAVORITE place!)
3:00--take the friends home
3:30--pick up Isaac's meds from the compounding pharmacy (on the other side of town)
4:30--come home and ORDER PIZZA HUT!!!
we'll wait for Joe to come home to eat cake and open presents (hopefully that's BEFORE 9:00pm!)

and Saturday we'll take him to see Kung Fu Panda (we didn't get to it last weekend!)

Sunday......we rest....and pack the car because we will DRIVE to Stanford on Monday!!!

***My little heart friend Drew is STILL at Stanford.....check in on him if you get a chance...and Elaina isn't doing very well...she could also use some extra prayers (I just don't like it when the babies aren't behaving!) BEHAVE BABIES!

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Wednesday, June 11, 2008

Hi..it's me...Eli...just chillin'
Just my little jumping bean...
Hi ladies...
ok...here's the long hair before I cut it! He looks like a little girl!
bye bye hair!
ok....I'm ready mom....go ahead and cut it!
ok...here's my new hairdo and my slobber!
another angle of the hair...(that's the shorter side)! and I NEED something in my mouth at ALL times!

We had a BUSY day...but we made it!!! Groceries were delivered on time, Isaac's feeding pump supplies were delivered on time...YEAH...food for everyone!
Pt, ot, and Nicole came over today...I LOVE LOVE LOVE those guys! They are as happy with Isaac's progress as I am...he's doing SO good! They always give me new ideas to try with him...and we worked with the exercise ball today...how fun (ok...Isaac didn't think so, but it was SO cute!)

Oh..and we saw Dr. K...she did Isaac's g-tube surgery. His site looks awesome...we don't need to see her again for SIX months!!!

Snot is still flowing in this house...but, maybe we can get it under control!

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Tuesday, June 10, 2008

I took pictures today...but, I don't have time to upload them....I will tomorrow though...

So...here's our day:

Eli is the sickest (he usually is--he must have DiGeorge too and doesn't know it yet!)! I've had to give him breathing treatments about every 4 hours! His ears aren't hurting him too bad...he's just having a hard time breathing...what's up with that??

Isaac's doing pretty good. Still snotty, still pulling on his ear. Guess what I did?? I cut his hair today...and I did a pretty good job...EXCEPT for the side-burns on one side are a little higher than the other (but, you won't be able to tell in a week). (although Joe did notice it as soon as he walked in!)

MY SWEET SWEET friend Holly called me tonight and told me that she just came home from the hospital and has a SNOT SUCKER that I can have!!! HOLLY...I'm such a slacker...I didn't even know that she had her baby this past weekend!!! YEAH FOR HOLLY!!! So...we swapped the snot sucker for a veggie tray (she's a health nut...I'm envious!)...now I can suck ALL the snot out of Isaac's nose...I'm SO EXCITED!!! (although, I did order the one you told me about Megan..it looks gross..but, I have this thing about snot...so, I'm sure I'll use it!!)

what else....OH, tomorrow we have Pt and OT coming in the morning, (hopefully Eli will go to school), our feeding pump supplies get delivered, my groceries get delivered (because I'm trying not to take Isaac out too much), and we see the surgeon (the one that did his g-tube)...she just checks on him every 3 months to see how it's healing and if he needs a different size (I LOVE HER)...and she STILL hasn't been paid by my insurance yet...16K!!! (They haven't asked me to pay it yet...I hope they don't....my money tree isn't in bloom yet!!!)

My sweet Joe is working his little bum off...I'm SO proud of him! (I mean...he's still doing everything around the house that gets on my LAST nerve...but, he's working so hard!)

I took a benadryl and I'm barely keeping my eyes open....so, I'm sure there's more I could share, but my own snot has clouded my mind and I'm useless!!!!

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Monday, June 09, 2008

No pics today...but, good news from the docs. Both boys have ear infections...that's ALL! So, a week on antibiotics and they'll be good to go! (and as long as Isaac's infection stays in the ear...he'll be ok for surgery next week!)

It only took one trip to Urgent care for Eli, one trip (after begging for ANY canceled appt) to the peds for Isaac, TWO trips to Walgreens to drop off prescriptions and another trip to pick up the meds...and we were settled for the afternoon!

Other than the sick kiddos...my heart just broke today. I met the nicest homeless man and couldn't do anything to help him. I saw him this morning on our first trip to Urgent care, he was waiting by the Walgreens...carrying two suitcases. And this is the real homeless man...not the kind that begs for money or hand outs...the kind that just wants to be left alone. SO...I came home, found a suitcase that I could part with, took some of Joe's old shirts, shorts, pants, some new underwear I bought for my dad for father's day...I made a toiletry bag with soap, shampoo, lotions, razors, toothbrush, toothpaste....Chris helped me make a food bag...I even found a pair of tennis shoes that Joe could part with. AND...the boys and I loaded into the van to give this to the homeless man. He was still at Walgreens. I approached him with my bag and told him that my husband had somethings that he could share with him....would he like any??
He asked what I had...but, he only wanted clothes like he was wearing (old Dickies)...I told him that I had shoes (because I noticed earlier that his were held together with duck tape!)...but, he didn't want any tennis shoes...I told him that I had a bag of food that he could have....and he told me that he had enough food. He told me that his name was Johnny...and asked what mine was. And...he walked off. It just broke my heart. I could tell that he wasn't the kind of homeless person that took your money to buy liquor...he was homeless because of some "mental" health issue...he just needed help. I tried one last time as we drove away to offer him some money...and he wouldn't take any. He was just so nice, so sweet....and he looked horrible. He was the kind of person that people try not to make eye-contact with...but, I hope that just our conversation made him a little happier. If Joe ever comes home at a descent hour...I'm making him go out with me to find him and maybe he can find out from Johnny if there's anything that we can do for him.

It's just sad.

Now that I bummed you out....sorry....that's just what happened today. So...for me...if you ever see a homeless person (and not the kind begging for money), just give them a little smile...acknowledge their existence....and know that we're all brothers and sisters.

Amen!
(ok...I'll get my crazy bum to bed now!!!)

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Sunday, June 08, 2008

Mom gave me a chocolate chip cookie today...
What in the world is this??? A cookie...who eats this??
Well...maybe I can try it.
Do you see anymore cookie?? I see a little under the chin...but, where did it all go??
Do you see my cookie up there??
He licked that cookie until it was ALL GONE!!!!

So....you'd think by the pictures that we're having a good day...well, that would be WRONG! He is SICK! It started yesterday. He's sneezing 2 or 3 times an hour, with snot blowing out everywhere....which I then have to suction or he can't breathe. THEN, he's drooling SO bad that it's just pouring out of his mouth...and I have to keep suctioning his mouth, because yesterday, it was causing him to wretch and throw up ALL DAY LONG. So, all night long....every sneeze...i had suction my little man (and my great hospital snot sucker broke...so, I had to buy one on ebay and just use what we had....but, those hospital ones suck the snot from their brain!!!) And tonight he started coughing...GREAT!

AND...if Isaac wasn't bad enough....Eli's sick too. It's Eli's ears (I think)...so, tomorrow when the doctors office opens..I'll see if my two boys can get squeezed in.

Both boys were feeling so bad that we were all able to lay in my room and take an afternoon nap....boy, did that help!

I'll let you know tomorrow how the appointment went...if Isaac doesn't straighten up...they won't let him go into surgery.

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Friday, June 06, 2008

OK...Ok...ok....

We're all alive and well. I've just been busy trying to clean my dusty old house!

Isaac is doing fantastic! He's off the O2 during the day and only on it at night! No throwing up for the past 3 days...just an angel (like always).

I did ground Chris yesterday (I knew that it wouldn't take very long). But, he hit Eli and I've told him to stop touching him (no matter how much he bugs him!)

Eli went to the library with a friend (Daphne--soo cute!). Anyway, he came home with information about their summer reading program....and for every five books you read, you bring the paper back and get a small prize. He made me listen to FOUR books tonight!!! I guess I'll have to go to the library tomorrow!!

Today is our 50th wedding anniversary (well.....it feels like 50 years)....and we celebrated by me cleaning the house and him working until 9pm... But, we'll go out to dinner tomorrow...and I'll pig out!!!

I'll be a good mom and post pictures tomorrow...and I won't put any girl clothes on him!
Hope everyone has a good weekend!

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Wednesday, June 04, 2008

Look at me on my tummy....it didn't last long..but, mom was QUICK with the camera!
This is what Eli does...stands on my couch, eats on my couch...and doesn't share~!
Here's a long awaited picture of Chris. Today was his last day of school...he'll be in high school next year....YIKES!!!
Hi ladies...he smiles when I pull the camera out now...I LOVE IT!!!!

Ok...now before you pick on me for the next shots...just know that my sister, Christy came over for a few days to help me with the boys (thanks Christy!!) and she was making girl headbands...so...of course we had to try them on Isaac...(I'll make it up to him when he's older!)

He's my little sunflower.....he would have made the most beautiful little girl!Ok...the last one with flowers in his head....he must have been tired...the crazy eyes are back!
(and no...I haven't replaced his glasses yet...)
Last picture...he's trying on a pair of angel wings that I made....and it's just perfect...he's my little angel!

So many little things have happened over the past few days...I just forget to write them down (my poor brain!). I forgot to tell you this weekend that Eli had his last t-ball game...and I GOT THE TIME WRONG....AGAIN! We missed it! I felt so horrible. (bad mama!) But, we did make it to the team party...they swan, ate, and got the cutest bobble-head trophies. (so, he forgave me). Poor Chris was too sick to make it to his last game and party...but, he didn't even care (and me, the slacker mom, hasn't even called the coach to pick up his trophy).

Christy came on Monday night and left this morning. She was SO helpful on Tuesday...helping me pick up Eli and Chris and taking them out for the afternoon so that Isaac and I could nap. Thanks CHRISTY!

So...for today. Eli had a well-check appointment (because he'll be SIX next week!)...and the doctor walked in and said, "Hi Eli"...and how's "Sir Isaac!" (Isn't that sweet...he knew Isaac's name and didn't have his chart)...Eli checked out great...48 pounds (I forget how tall)...but, doing GREAT! I did show Dr. A Isaac's latest lab results. He too was concerned and actually gave me two more tests to have Stanford run. He also agreed that if the new labs were still low or lower...then, he's going to refer us to UCLA's Children Hospital (they have a big immune department and also do bone marrow transplants on DiGeorge kids)...we're not there yet...but, these guys are more equipped to deal with Isaac than the Vegas docs!

We're ALL just exhausted...waiting for that break in the clouds. I don't know what I'm going to do with Chris home ALL day with me tomorrow (he'll probably get grounded)...

**Please check in on my heart baby Drew...he's just hanging around Stanford and won't leave!

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Tuesday, June 03, 2008




Isaac was a champ this morning. They actually gave him the sedative when we got there and wanted him asleep right away...and 15 minutes later, I was rocking a sleeping (mouth wide open) baby doll!) They WOULD NOT give me the results today, I had to make an appointment to come back in 2 weeks to review. WELL....in two weeks, I'll be at Stanford! So, I called when I got home and asked if the doctor could please call me and go over the results so that I didn't have to wait a month....and she told me that if there was anything significant during the study, the tech would have gone out to get the doc...so, I was probably safe waiting a month to hear the results.

SO...here's hoping we ARE SAFE waiting for the results....and his little brain is firing just fine!

fyi....we just took a TWO hour nap!!!

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I know..I know...It's just been crazy around here!

Overall...Isaac had a great weekend...and then yesterday...he started up with his daily marathon wretching and throwing up. And...he started this cough last week. The ped said it was just allergies (his throat getting tickled from his post nasal drip)....but, it's starting to sound a little yucky! BUT...he also started Enalapril (to lower his blood pressure) and they said that could make him cough...WHO KNOWS!

So...this morning, at 9am...he has his EEG! He stayed up like a champ until midnight (because of Yo Gabba Gabba) and we've been up since 5am!! (It's going to be a LONG day!)

But, my sister Christy is here to help with the boys, car shuffling, and take them out of the house this afternoon so that I can nap!!

I'll update when we get back!

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