RollersInVegas: January 2008

Thursday, January 31, 2008

1/31/2008 08:50:00 PM

We had NO appointments today!!!

Yeah!!

So...we didn't do anything. Just ate...and ate...and watched tv while we ate some more!

Isaac is doing great. He goes in tomorrow for an ultrasound of his kidneys. He had fluid around them when he was born, so this is just an annual follow up...so, it should be fine. The CNN show, "Broken Government" was on tonight. But, we got an email last night...and we were one of a few families whose interview got cut. Oh, well...but, Terri (Matthew's mom) looked beautiful!!! Great job Terri!!! Click here to go to CNN's page. It was a great show...one I hope that you all get to see. One that I hope all politicians get a chance to see.

I am glad to bore you with our mundane Thursday...I hope to bore you again tomorrow.

Wednesday, January 30, 2008

1/30/2008 08:26:00 PM

Mom thought I would eat tonight....
I showed her...I had other plans...
I'm trying to hide with my hood on...
but...I think Eli knows where I am!!
AHHH!!! It's Eli!!
Mom bought these headphones for me...
What do you think???

What funny pictures we have to share today!!

We saw the neurologist this morning. I get there at 8:45 for our 9:00 appointment...only for them to tell me that my appointment was at 2:30!!! WHAT!?!? (I have officially LOST MY MIND!!) Lucky for me, the people that had the 9:00 didn't show up...and they were able to see us. He was a very nice doc...but, didn't tell us anything that we didn't already know. Isaac has very, very, (did I say VERY) poor muscle tone. (hence, the fact that he doesn't put any pressure on his feet and he can't hold his little head up for very long). He was concerned that an MRI hadn't been done yet of his brain and spine. So, he ordered that along with an EEG. So...it will probably take a week to get it scheduled...but, I'm excited to get it done and see the results! He assured me that his muscle tone will improve...that nothing new is wrong with him (like a muscle disorder or anything). So..all in all....little man is good and nothing new to really report!!! He had another retch free, throw up free day!!! Maybe those days are behind us!!! He's doing good with the new feeding changes that we've made...so, maybe in a few weeks I'll post pics of some chunky thighs! (Elijah...watch out!)

Eli and I made sidewalk chalk tonight. I'll let you know tomorrow how they turned out. We're trying to make a bunch for him to give to his friends at school for Valentine's Day (oh...the things I get myself into).

****Isaac was alseep on the floor...and just woke up to watch American Idol!!! He's SO funny!

Tuesday, January 29, 2008

1/29/2008 11:35:00 PM

Gosh...look at how late I'm posting...oh...it's SO past my bedtime!

So, we went to the GI doc. Everything looked great. He weighed in at 15 pounds 4 ounces...he's movin' on up!!! YEAH for Isaac!!! Isaac is still having NO retching or throwing up episodes. No one knows what the cause was or why it suddenly stopped. But, whatever the cause, I'm glad it's gone!!! We are going to start transitioning him from my breastmilk to formula....by just fortifying my milk to 24 calories and when I run out...then, he'll be on straight formula. (and we're still adding the MCT oil for more calories) I should have my chubster back in no time at all!!! Just in time for swimsuit season...he'll have a roll on his tummy as big as mine!!! (gosh..I hope not!)

He's still really tired. He sleeps alot these days....he doesn't hold his head up for very long...and his eyes...oh, poor thing! He'll be watching Yo Gabba Gabba (on the big screen tv) and his little eyes look like he's watching the fireplace. I can't tell what that little man is looking at. I'm SO glad that we're seeing the neurologist tomorrow.....even if it's to say we wasted our time...better safe!

We don't have any appointments for Thursday...but, Friday I'm going to TRY to get some blood drawn for him for that t-cell count panel the immunologist needs. (no one can ever get any blood from him...)

Our other boys are doing great. I don't know how we ended up with such wonderful boys...I could just eat them up!!! And Joe...poor thing is going crazy spending his days with us...but, he's been such a wonderful helper. He gets up with the big boys every morning and gets them off to school (because sometimes I sleep in with Isaac--he's my snuggle buddy).

I'm running to bed now...boy do i need some beauty sleep...days of it..but, I'll take 6 hours.

Monday, January 28, 2008

1/28/2008 08:49:00 PM

What?!?!
I still lose control of my head sometimes!
I'm smiling'....but, you're not going to see my eyes!
Ok...see my eyes...now...you're not

going to see me smile!!

Seriously...I'm not smiling anymore!

This was Isaac yesterday. What a little personality he has now. Quick to tell us what kind of day we're in for!

Today we got to meet heart mama Lisa (Mason's mom). We had a BLAST! Thanks for having us over Lisa! You can read all about them on their blog (Mason..on the right)...except LISA doesn't update her blog everyday....we'll talk to her about that!

Then, we (Isaac and Eli and myself) went to see Dr. Nakamura (pulmonologist). He said that Isaac's lungs sounded great...but, he heard a crackle. Hmmm...a crackle where?? Well...in the heart murmur. What does that mean?? Well, it means that he has fluid build up. So, he called Dr. Mayman and he told us to increase our daily dose of lasix from once a day to twice a day. We see Dr. Mayman next Tuesday. Dr. Mayman's office is late receiving our RSV dose...and we're late getting the shot...so, Dr. N gave us a shot (well two) while we were there. YEAH!!! (rsv stay away!) Also, his sats were a little lower than normal. They're hovering in the low 90's. Which isn't bad...but, his lungs are clear...so, something's up with his heart. I forgot to ask how low it goes before we put him back on oxygen. So..I'll keep a check on that this week.

Tomorrow...we see Dr. Baron (GI doc)!!! Yippie! We'll get a true gage of Isaac's weight and tell him how he miraculously stopped throwing up, his blood sugar chilled out, and how he's suddenly "normal". I am ready to stop pumping (not that I don't love my Isaac...just tired of pumping)...so, I'm going to ask if we need to transition to formula or pediasure. (Maybe the pediasure has more calories anyway).

So...he's currently snoozing right here on the floor (where he falls asleep every night), Joe has to make a late night run to Wal-mart (which he does almost every night), the big boys are in bed (for now), and I can hear my Christmas bubble bath soap calling my name...ta ta for now!!! I'll let you know tomorrow how the GI visit goes...should be GREAT!

BAD MAMA...I almost forgot...It's Isaac's birthday...he's 10 months old today!!! YEAH for Isaac...you survived in our crazy house for 10 LONG months...poor thing...I should have bought you a special treat today...instead I make them give you 2 shots. Mama's sorry butterball....one day you'll forgive me. We love you angel!

Sunday, January 27, 2008

1/27/2008 01:01:00 PM

We retired the frog pacifier...and Joe made a monkey one!
Two little monkeys!!!
Look at him hugging his monkey...too cute!
So...we took the "Goof Troop" to church today...
and Isaac needed a bath first thing this morning...
Because we "fed the bed" again...what a mess!

Our day has been crazy already...and it's not even lunch time yet!!!

We woke up to a wet bed. Isaac's feeding tube became disconnected AGAIN...and leaked all the milk everywhere! And sweet little Isaac doesn't mind. He doesn't care that he isn't eating...nor, does he care that his body is covered in milk...he just sleeps right through it! (What a sweetie) So...we head downstairs and give my little pumpkin a bath!

Then, we wake up our big boys and get them ready for church. We all went...and Isaac slept the entire time! (Well, Isaac and I only stayed for the first hour). We didn't stay for Sunday school...that's too close to everyone and the GERMS! So, Joe brought us home and he went back to go to class and he'll bring the big boys home when it's all over.

Oh...and how about that MONKEY! The frog was quite yucky...Isaac eats the feet now also...so, we'll have to replace them more frequently. He did such a good job...he even made a dalmatian dog also...but, I'm keeping that aside for now (to keep it clean). (Kelly...we're making yours this week...I PROMISE!!)

Our friends Tim and Tasha came over yesterday...what fun!!! Thanks guys!!

It feels almost like normal again...people coming over, our family going to church together....and we signed Eli up for t-ball yesterday! Who would have thought??

I have plans to eat and nap and EAT today....I'll have to start exercising soon...we made cupcakes yesterday...and they are ALL GONE (my fault!).

Friday, January 25, 2008

1/25/2008 09:05:00 PM

This is our Eli...He fell asleep on the bench at the kitchen table.

He's laying on a pillow and put one on top of him...and of course

he is sucking his thumb while snoozing away!

Dad brought home McDonald's french fries!!!

I don't know which one to eat first...

(probably because I'm crossed eyed again)

Still eating...and freakin' mom out with my eyes!

Whooo...I caught it! (and mom didn't fix my hair

today...it's a mess!)

Well...that about sums up our day. The big boys were out of school...so it was CRAZY around here. Chris is on a campout tonight, so Eli is camping out in our room.

Isaac had another awesome day. He even ate half a jar of baby food!!! Now, that's stage 1 bananas...and he would often put his pacifier in his mouth to help swallow it....but, he did it...no throwing up!!! His eyes are still wondering ALL day long...I know it's giving him a headache. I did get an appointment with the best Opthamologist in town for stabismus....but, her earliest opening was Feb. 27th...so, we'll just let him freak us out with the eyes for another month!

Thanks for all the comments about the eyes! I'm not at all worried now. The stabismus is much easier to swallow than a possible neuro problem. So...eye patch, glasses, eye surgery...bring it on...we're ready! (Although...a patch would be cool...PIRATE ISAAC!!!)

It's SO amazing that he isn't throwing up soo much! It is so cool to be able feed him and then pick him up without worrying about the retching or throwing up. It really is like having a normal baby...well, as normal as we could possibly get.

We hope everyone has a good weekend! We all have plans to nap, eat, and nap again!

Thursday, January 24, 2008

1/24/2008 06:17:00 PM

WHAT??? Mom's reading to Eli and dad called my name...
OK...I'll pose for you!!
Hey...I'm missing mom's story...
Yes...I'm just a cheese ball!
I played on my tummy...this is as far as I can

lift my big head. whooo hooo!

Isaac had another day without retching or throwing up! He sleeps all night like a champ! Mark and Nicole came over today. Isaac worked on sitting up and head control. He ate a few bites for Mark and licked some cheese puffs (his favorite). His new favorite thing is screaming at me. Just a quick, "AHHH!"...but, he does it when needs the tv on, when it's time to eat...or when he poops. So, I hear, "AHHH" all day long!!! He's not crying...just finding his voice. It's quite odd hearing noise come from him...he's been silent for so long, it just doesn't seem normal that a sound would come out of his mouth!

OK...I'm a little worried about something that Isaac started doing this week. He's not tracking with both eyes. One eye will look one way and the other one will not move. And it's not one eye...they switch up moving and staying put. (It's freaking me out!) He did this when he was a baby...and his eyes would shutter from side to side...but, they attributed it to the Reglan that he was on and we haven't given it to him since....and his eyes haven't done this for months. Here are a few pics I took of him tonight so that you could see. I am standing right in front of him.

So...give me your input. Any ideas?? I did make an appointment with the neurologist for next Wednesday. I guess I need to call an opthamologist also.??

Wednesday, January 23, 2008

1/23/2008 10:39:00 PM

The day got away from me...so, I'll post some cute pics tomorrow.

Isaac played on his belly today for about FIVE whole minutes!!! He's having a hard time holding up his little (I mean BIG) head. His poor little neck muscles can't seem to catch up with the rate at which his head is growing. We had another day without retching and throwing up...YEAH!!! I really don't know what's gotten into our little man...it's almost like having a normal baby in the house!!! (freaky!) Mark (speech) and Nicole (dev therapist) come over tomorrow and I can't wait for them to see how good Mr. Man is doing. Maybe he'll eat for Mark! We bought a scale today (finally...we should have bought it months ago). But, on this scale, he weighed 15.1 pounds. So, I'll start weighing every few days and see if he's moving up any. He was suppose to have his RSV shot last week...but, we were at Stanford...so, he missed it. They're going to call me tomorrow if their office gets some extra doses so that he can get one...and if we go in...I need them to TRY and draw blood from him because we're suppose to check his CD-8 levels this month and see if they are increasing or decreasing (those are cells that help fight infection). Last time they had NO luck getting blood from Isaac...maybe this time will be better.

Isaac watched American Idol again tonight...still cracks me up! Last night, Eli was watching with us and someone horrible was singing...and he said, "They're burning my ear holes!" ....I wish we had our own reality show...because it's always a zoo here! My Christopher (who's 13 going on 30) rode his bike with two other friends to a drug store that was going out of business. They wanted to buy some water guns that were on clearance. Well, an hour later I get a call from him on his cell phone...the store had already closed, so...they were sitting at Baskin Robbins eating ice cream!! First of all...how DARE he eat ice cream with ME...and second...I know that he thought he was SO COOL hanging out at the ice cream store...I could just picture him and his little goofy friends!!! They make me laugh SO HARD!!!

And JOE...he unpacked HIS clothes from the suitcases today. And left everything else in it for me to unpack. You know that he knows where my things go and Isaac's go...just when I think I have that man trained...

Other than the suitcases...he's been a very useful engine. I LOVE having him home with me everyday. (I didn't think that I would). I wish we could just live off love and no one would have to find a job...oh poo...

I'm just waiting for Isaac's feed to finish so that I can go to sleep...talk to you tomorrow!

Tuesday, January 22, 2008

1/22/2008 07:38:00 PM

Well...well...well....

I dropped off Isaac's latest cat scan and esophagram records for Dr. Mayman to review this morning...and he just called back. He and the other cards talked and they all agree that the confluence (the part of his heart where the conduit and the pulmonary arteries meet) is very large. But, the esophagram shows that his airway is not compromised and he can indeed swallow (why he doesn't is beyond me!). He's glad that they didn't jump into heart surgery...and here's our plan:

We're going to watch the confluence...keep measuring it. He reassured me that although it is big, it will not rupture...although, it still may pose a threat to his airway if it grows bigger.

So...we'll keep measuring it...and if his breathing becomes labored...we then may need a cath or cat scan because then it may be time for the surgery.

Everyone is in agreement that he needs time to heal.

He did ask me if we had a neurologist. Well, I don't...but, I'll find one tomorrow. He said thinking from a peds doctor stand point...the unexplained throwing up is probably a GI issue...but, the brain needs to be checked just to rule it out.

UMMM...overall..the news is good. Little Isaac gets a break and he can heal. His poor weight gain is concerning to everyone, but we meet with Gi next week and Mark comes over on Thursday. Joe is going out tomorrow to buy us a scale for little man. He didn't retch at all today...no throwing up either. I guess the talk of surgery straightened him out!!!

Oh...and have I told you that he LOVES music. Every toy has to play music or sing...or we have to be singing to make him happy. So, it would make total sense that he LOVES American Idol. He will be dead asleep...hear it on the tv...and wake up..and stay awake for 2 hours to see the entire episode! It cracks me up! He's watching right now!!!

Monday, January 21, 2008

1/21/2008 08:54:00 PM

Just look at him...doesn't make since that we had to go to Stanford. He's done awesome since coming home. He did retch 4 times today...but, he didn't throw up at all. He was able to control it and keep it down. He's sleeping at night like a champ...he's tolerating the increased amount of feeds. We stopped the corn starch because his blood sugar has been fine. (that again doesn't make since...it was high last week). Joe made copies of his Stanford records today for me...so, we'll start calling tomorrow to see all of our specialists.

He started doing the CUTEST thing last night. First...Isaac doesn't make any sounds. Just a few giggles and crying...all smiles...but, no sounds. No babbles. Well, yesterday, we were singing to him...and he started mouthing the words like he was singing along...without the sound. It's amazing. One day the sound will come...but, he's never moved his mouth like he was ever going to even try to make a sound. I'm looking for the camcorder to record it for you...it's too cute!

Eli is feeling better...but, still coughing a lot and needing a few breathing treatments each day. Chris has been a big helper and ready for school to start again tomorrow.

I called Dr. Mayman's office today...trying to get in tomorrow. The receptionist will call me in the morning to see if they can squeeze me in. I'll be sure to post if we get in!

Sunday, January 20, 2008

1/20/2008 04:20:00 PM

This was his bath at RMH (we thought it would be his

last bath for a while)...he was NOT happy with me!

Why are you taking pictures...I'm in distress!!

My cute little DiGeorge ears...they'll drive the girls crazy!

We're having a GREAT Sunday!

First of all...it was SO nice to sleep in our own bed! Although, I did wake up to Isaac playing with his mobile (I know...he shouldn't be able to reach it)...and I thought...SO, cute waking me up playing instead of screaming at me. So, I reach down to pick him up and I FED THE BED again. I can't figure it out. His g-tube site wasn't wet, the feeding pump tube was still connected to his connector...GO FIGURE???? But, he was soaked and so was everything in the crib! Poor thing...I don't know how long he just laid in milk! (The same milk that he NEEDS to be taking in).

We make it downstairs and change clothes and wash up. Joe had to take Sue to the airport to fly home this morning. Thanks Grandma Sue for watching my angels!

I have been increasing Isaac's feeds by 5cc's every feed (he's now at 5 1/2 ounces every four hours)....i have to fatten him up! He's also getting 2 teaspoons of cornstarch with each feed (which...helps keep his blood sugar levels low) and 2 cc's of MCT oil (that's just fattening oil). He hasn't thrown up once today...he's been so happy and playful!!!

He's currently sitting in his bouncy seat, with his feet propped up, watching the game.

Saturday, January 19, 2008

1/19/2008 08:46:00 AM

As excited as I am to be going home...It's 8am and he's already thrown up 4 times (nothing but the mucus).

They gave me a copy of all of his records--everything that we've done this week. And, I just had a chance to glance through them. But, even the cat scan report spells out things that they did indeed see in Vegas. So...I'm not totally convinced that this pressure isn't the cause of his retching. I do know that it is a BIG risk to operate on him right now...and they could have just told me that they would rather us deal with the throwing up and find other ways to get him to gain weight...but, they couldn't conclusively rule the heart/esophagus pressure out as the culprit of the retching.

I'm going to get home...and pull out the records and read through them in their entirety....then, try to get in to see Dr. Mayman next week and get his take on all of this. (Because he was sure that we needed surgery).

So....we're headed home....throwing up baby in tow....nothing yet solved, but a little relief that it isn't so emergent that he needs surgery right away!

Friday, January 18, 2008

1/18/2008 06:20:00 PM

Once again...you're not going to believe the recent news...

you'd better sit down for this one...

We're going home!!!

I can't explain it.

Let's recap the series of events.

We go see our cardiologist. Isaac's had a bad month of retching and throwing up. Just to be certain that it's nothing heart related...he orders a cat scan. It's that cat scan that shows an enlarged area of his heart and it appears that it's pressing against his esophagus (potentially causing it to block off his airway).

So...he sends all of this to Dr. Hanley...who reviews it...and agrees that we should head to Stanford for surgery.

Upon getting to Stanford...we have a cat scan. It shows the enlarged area of the heart. From the Vegas scan...they were thinking it was an aneurysm...this cat scan cannot confirm that. This scan also showed smaller branch pa's (but not so small that they would need to operate just to make them bigger just yet)....what this cat scan did not show was an indention in his esophagus....the reason that we're here.

All the docs confer here...and decide that we need another study done to check on the esophagus...SO...today, we go in for a barium swallow study. It looks just fine...(we were actually able to get Isaac to swallow it--screaming the whole time...but, he swallowed it).

So...based on the fact that they've done 2 tests that show no pressure on the esophagus. They feel like the enlarged part of the heart doesn't need immediate intervention (the pressure in that area is high...but, not high enough that they would recommend surgery so soon after his last surgery). And as far as the pa's go...they are small, but again...not so small to risk going into surgery when he isn't healed from the last one.

I have a copy of our cat scan pics here and when we get home I will get a copy of those. I'll put the two side by side to see how in the WORLD it could have changed so much in one week. I can't imagine that the first scan was read wrong...because the docs here saw the same pics and agreed that he needed surgery. I want to say that this happened because of all the prayers. I didn't think Isaac was ready for another surgery...and I'm glad that it can wait. I'm not at all mad at our trip here. I'm so glad that the docs here were very patient and careful....not rushing into a surgery that he might not need just yet.

I'm going to buy a ticket now...so, we can head out tomorrow before they change their minds!

1/18/2008 09:49:00 AM

We have a new plan...well, kind of:

Dr. Hanley's PA just called and here's what they know from the cat scan:

**The confluence is large around the central PA. They're not sure yet if it's an aneurysm.

**There are 3 small left Pulmonary branches that are stenotic (narrowing)

**They can't confirm that it's the heart putting pressure on the bronchial tubes...but, they can see that there is some narrowing of the bronchial tubes (this could need further study after the heart operation)

**We're still on the schedule for surgery on Thursday

**He has a good white count...but, his blood count is a little low at 296.

**Heart cath is scheduled for Tuesday at 8am.

WHEW....what a week we'll have!

Isaac is currently a grumpy bug...we'll take it!

It's 10:00 and I haven't had my cereal yet...so, I've got to get downstairs...it'll be lunch soon!!

Thanks for checking on us!

Thursday, January 17, 2008

1/17/2008 07:29:00 PM

He just got wheeled out of the cat scan. They won't tell us any results...maybe tomorrow. He's still asleep...he'll be waking up soon and we can take him back to RMH.

GUESS WHAT?? As life goes at Stanford...surgery for tomorrow is canceled due to lack of bed space in the CVICU. For now...they have re-scheduled us for Thursday. So, I'm hoping that whatever his problem is...is not too severe...that another week will not hurt. (Although...I'm sure if the cat scan shows otherwise....they'd find a space to put us).

So...now we'll just decide what to do until then. I told Joe to take Isaac back to Vegas for a few days and leave me here...but, I don't think that's an option he's going to agree to.

I'll post tomorrow and let you know what the cat scan results are as soon as we know anything!

Just one more episode to our soap opera (we should become writers for them!)

1/17/2008 03:13:00 PM

We came back to RMH for a few hours. They are a little swamped here!!!

So far...we've had his echo and ekg and chest xray. The cat scan is scheduled for 4:00. After reading those results...they may decide to do a heart cath TONIGHT!

Now...until they see the cat scan results...they won't know exactly what they're dealing with. But, with our results from last week...there are 2 possibilities.

1. He has an aneurysm. (that's a little scary...he's not an old man!) The surgery to repair it won't be too bad...but, getting through his scar tissue without causing it to rupture would be.

2. That the pulmonary arteries that they graphed cadaver skin to in hope of enlarging them have started to narrow. This would mean a repeat of the unifocalization surgery (the one that took 14+ hours 2 months ago).

Either way...tomorrow could be a very long day. And you know Stanford (and Isaac for that matter).........he could require more tests and the surgery get postponed until next week.

I personally don't like possibility 1 or 2....I'm hoping it's gas or allergies to my Mexican food.

I'll keep you updated.

1/17/2008 09:35:00 AM

We're at the hospital waiting for our echo...but, Isaac was up ALL night last night. Coughing, throwing up, retching, then he'd repeat it all. No ONE got any sleep. He doesn't have a fever...so, I'm not sure if he's catching something...or this is just a bad retching day.

Then, we get a call from Grandma Sue this morning...She had to take Eli to the doctors and he has Strep Throat! YIKES....so, when we meet with the PA, we'll get them to do a culture and make sure that isn't Isaac's problem. If it is...I hope that it doesn't postpone his surgery.

We'll keep you updated. We're worse than a soap opera here...such DRAMA!!

Thanks for all the prayers!

Wednesday, January 16, 2008

1/16/2008 09:51:00 PM

Sorry about the late post...but, we made it safely to Palo Alto, CA!!!

It's warmer here than in Vegas...what a treat! You know that I keep telling you that things just keep happening...well, would you believe that one of my sisters just moved to CA, and she was able to pick us up from the airport and let us borrow a car so that we didn't have to rent one. THEN, we get into our room at RMH...and it's twice as big as it usually is. We're on the top floor, vaulted ceiling, only 5 other rooms on this floor...it's AWESOME! We were able to take Mandy (that sister who's here) and her kids (which includes her husband) to Mexican food for dinner!!! MY FAVORITE! Then, we sent them back home with hugs and made a quick Target run for the supplies that we need. I've given Mr. Sunshine his bath and he's snoozing while he eats.

I was wondering if we really needed to be here so soon...but, Isaac spent yet another day losing more food then he kept in...so, I suppose we're where we should be. We'll all be sleeping soon for a PACKED day tomorrow. We have to report at 7:30am...with pre op stuff to do, people to talk to, an echo to have done, (I might suggest a chest xray...he's been choking alot and sounds junky), we report to pre-surgery area at 2:30 in preparation for our CAT scan....and we don't know if we'll have to spend the night at the hospital tomorrow or not...depending on how he does while he's sedated. WHOO....at least we're familiar with everything here...where to go, where to park, where to eat....and we've already seen familiar faces.

We should talk to Dr. Hanley's PA tomorrow and she should have an idea of what their plan is for surgery tomorrow....I'll take my laptop to the hospital and post while he's in his CAT scan!

Thanks for all your prayers...and for sending your love to Miss Kate and her family.

Tuesday, January 15, 2008

1/15/2008 10:18:00 PM

Thanks for checking in on us....for your treat...I have pics!

This is Eli showing off the toys he lets Isaac play with.

Chris....pretending to do schoolwork.

Isaac, trying to eat his g-tube...and the dog Eli made for him.

Still trying to eat that tube!

Eli just showing off his charm.....again!

This is how Isaac sits in his bouncy seat...seriously!

Still in the bouncy seat....propping the legs up...

Show off! and cheesy Eli striking a pose!

Hi ladies!

Side view...I'm still adorable...

***We're packing and cleaning. The big boys are in bed, Grandma is in bed, and Isaac is watching American Idol (really...he can't keep his eyes off the tv!). We'll be busy packing all night and into the morning...

We have the pre-op appointment at 7:30am on Thursday and First and ONLY case on Friday. Please pray for Isaac, the doctors and nurses that take care of him, for Joe and I, (really, that Joe stays off my nerves), for my big boys (that they can handle their mama leaving them again), and for Grandma Sue (that my big boys don't drive her INSANE!).

1/15/2008 01:28:00 PM

I can't even believe that I have to type this...

We're flying out tomorrow for pre-op on Thursday morning...for surgery on Friday. So, I asked her what case we were on Friday....well, we're the ONLY case. They expect it to take all day! Oh..my nerves.

oh.....my nerves.

oh..my nerves.

ok...I'm fine now...oh, my goodness! We've put away the groceries, got the smog check, picked up Eli from school, and started cleaning the house. Now, I need to get plane reservations, car reservations, wash clothes, fold, pack, and I need to go to the store and get a couple of things.

Good thing...we did get a call from RMH that we DO have a room for tomorrow. Thank goodness!!

Oh...I have many things to do....

I'll post tomorrow once we get there to tell you that we made it!

1/15/2008 08:35:00 AM

Well...our night ended just stinky last night.

Isaac retched his poor little head off all day. We got the call from Dr. Mayman last night. He was able to see the cat scan results in 3D. And...still doesn't look good. They don't know how Isaac is breathing. He will call Dr. Hanley this morning at 8am (and it could take all day for him to get back to us)...but, he told us that he didn't think that there was any chance that they would postpone his surgery. So...this will be Isaac's THIRD OPEN HEART SURGERY IN SIX MONTHS! My nerves can barely take it! I am a little worried about this one...until they give me specifics on how they are going to address the heart and airway. He's not chunky at all, he's got junky lungs right now from the vent last week, and quite frankly...I'm not ready to go back. I guess I don't get a choice though. I ordered groceries last night (because I had a free delivery coupon!) and have plans to try to organize this crazy house of mine and get us packed.

AND...on top of hearing that surgery is inevitable for us....our little Kate heart baby is doing horrible. Their post last night made me cry. If you don't mind, leave her parents a comment so that they know they are loved. Krista and I had already arranged for Kate and Isaac to be married in the future...they are exactly alike...even the way they sleep in the crib.

We don't have any appointments today...so, I'll just keep busy getting things in order to head to Stanford and I'll post the minute we hear from Dr. Hanley.

Monday, January 14, 2008

1/14/2008 10:16:00 AM

Happy Monday!!!

Ok...well, our Monday isn't starting off so happy...but, we'll see if we can work on that! Our day started with Isaac retching non-stop for about an hour. He first starts throwing up the mucus (looks like snot...clear at least)...then, it will turn into mucus and milk...still gross! Finally, when he settled down, I was changing him out of his pj's....and guess what??? His g-tube site was leaking again...and NOT MILK...it had the SNOT all around it! Gross again! (That's why his nickname is Icky!) Now...this is the second time that the mucus has come out from his belly site (I'll be sure to tell the GI doc on Wednesday when we go for an appointment).

Now that we have Isaac settled down and sleeping (and in clean, mucus free clothes)...let's move on to Chris. He was up all night coughing...complaining of a sore throat this morning. (In the back of my head...I'm thinking...don't be strep, don't be strep)...so, we call the pediatrician's office and they were able to see Chris this morning. So, Joe took him at 8:00...and LUCKILY, it's just a sinus infection...he's got antibiotics...and we'll just put him to bed today and let him rest (far away from Isaac)...hopefully, he'll start feeling better tomorrow!

And finally, we have my little Eli...the ONLY one cooperating and adhering to the "one child sick at a time" rule! Thank you ELI! He's doing great, went off to school like a champ...I think I'll buy him a new book today...YEAH ELI!

The only appointment we have today is with Social Security. It's part of the process, but we have to see if Isaac qualifies...so, I'll go to the interview this afternoon and Joe will watch the boys. Dr. Hanley should receive Isaac's cat scan films today...so, we're all hoping to hear from him today. To see what he thinks looking at the films and his whole file at one time.

I still haven't taken the tree down. Still haven't unpacked the suitcases. So, I've come to the conclusion that we'll leave the tree up all year long. We'll decorate it for Valentine's day with hearts, we'll put kites on it, eggs on it, sun shines on it, halloween decorations on it, turkeys...and then, we'll put the Christmas decorations on it when we get to December again! And...as far as the suitcases...I'll just add a little to it...and we'll be ready for Stanford (no need to pull it all out...they should all be clean and fit..I hope!).

I'll post again today if we hear from Dr. Mayman or Dr. Hanley!

RollersInVegas

Thursday, January 31, 2008

Wednesday, January 30, 2008

Tuesday, January 29, 2008

Monday, January 28, 2008

Sunday, January 27, 2008

Friday, January 25, 2008

Thursday, January 24, 2008

Wednesday, January 23, 2008

Tuesday, January 22, 2008

Monday, January 21, 2008

Sunday, January 20, 2008

Saturday, January 19, 2008

Friday, January 18, 2008

Thursday, January 17, 2008

Wednesday, January 16, 2008

Tuesday, January 15, 2008

Monday, January 14, 2008

Isaac

About Isaac

Chris

Elias

About Me

Followers

Blog Archive

Heart Babies

More of my Favorite Blogs