RollersInVegas

Still barking...

Happy Birthday to my little sister Christy!

Still barking....

Here's an example of why I haven't gone crazy yet:

I spent the day barking (still), filling out paperwork, making copies of medical records, and changing poopy diapers. Finally, we eat a delicious dinner of burgers and cheese puffs and then it happens! ISAAC ROLLED OVER!!! Finally, he's 9 months old and he did it!!! See...it could have been another stressful day...but, ended with Isaac rolling over. I don't know why...but, that's how it's been around here lately. We'll be hit with bad news and then something always overshadows it....something as simple as a baby rolling over!!! I couldn't be happier!!!

So, here's a little video with my big mouth in the background (you may want to mute your computer). Sorry it's so shaky, Chris was busy watching the football game and not Isaac!

Still barking like a dog...me, not Isaac.  He has a little cough now and then...but, he's ok.

It's bronchitis!  URRGGHH!!!

Merry Christmas!!

We hope everyone had a wonderful Christmas! Sorry I didn't make a lot of calls today...I sound like a barking dog with a stuffy nose! (What a combination..I know!).
The boys are all doing well...Eli is feeling a lot better....it appears that I am the germ pot now!
Janice and Natalie came over today and brought us a Christmas dinner and it was DELICIOUS!! Thanks you guys!
We have so many things to be thankful for this year. For OUR health, our son's health, the wonderful doctors and nurses, the awesome heart moms and dads we've met, our friends and family who have supported us this CRAZY year, and for our faith in Heavenly Father and Jesus....that we're not ever alone in all that we endure....that we KNOW we're always loved and that there's always a hand on our shoulder when we need to be strong when times may be tough.
(sappy...I know) It's just been a long year....(I'm on lots of cold meds)...but, we have been thrown curve balls and could easily sit on the floor and cry...but, we're NOT! We're so happy right now...spending time together as a family...while we make the plans for our future. (Our cups are ALWAYS half full!)
Enjoy our Christmas pics...IT"S LONG...so, just press play and dance around the room to the music!

Photo and video editing at www.OneTrueMedia.com

First of all...I will CHANGE my password so that my LITTLE SISTER cannot post on this blog!

Hey everyone. This is a couple of hours early and hopefully Kathy won't kill me but....

HAPPY BIRTHDAY TO YOU
YOU BELONG IN A ZOO
YOU LOOK LIKE A MONKEY
AND YOU SMELL LIKE ONE TOO!!

I hope you have a great 32nd birthday Kat. :)

I love you,

your YOUNGER little sis Mandy

Hers's some Christmas pictures for your viewing pleasure.

I know it's Friday...but, let me tell you how our Thursday went!

Here's Mr. Isaac with big brother Eli. How do you like the princess crown?? Mandy bought a birthday cake and we had fun playing dress up with Isaac with the crown...(I know...he's not my little girl...but, I couldn't help myself!)






Here's Isaac with big CRAZY brother Chris...oh, the things Chris will teach him!

Sorry about not posting yesterday...but, once again the day got away with us!
The interview with CNN went great!!! The hour long special should air at the end of January. When they let us know, we'll be sure to let all of you guys know!!

My sister from Phoenix came over last night and brought my stinker 6 year old nephew and my 1 year old niece (who's my little magpie!). They had a blast running around the house and eating nothing but junk food!!! (What are aunt's for anyway??). They left late today...so, I'm still trying to CLEAN UP AFTER THEM! (yes...Mandy...you make a mess!)

As for Mr. Isaac. He started this morning with some horrible retching episodes. Where he was throwing up at the end of each one. POOR THING! But, as the day progressed...the better he got. He got a bath tonight...so, he smells SO GOOD. He's smiling ALL DAY LONG! He LOVES his big brothers. If they walk past him and don't stop to talk...he starts to cry. It's the sweetest thing! He still doesn't make any noises. He did just start squeeling at his toys when he gets excited...but, no babbles yet. I say "ma ma" to him all day long...in hopes that he'll call me FIRST! His g-tube site still leaks at times. But, both docs have looked at it and say that the size is correct. My only guess is that after surgery, he got swollen, then lost weight...and now is slowly gaining it back...so, maybe the skin around the site is just stretched out and not as tight. (maybe??)

I'm trying to download new pictures...but, I'm having technical difficulties. Joe had the camera attached to his computer, so...I just unplugged it and plugged it into mine. WELL...it says that there are no pictures to download...WHAT?? I forgot to "safely remove hardware" from his computer before I unplugged it! (I'm not telling him though...) I plugged it back in and I'll let him figure it out....ha ha ha!

So...hoping that I didn't erase a thousand pictures...I'll post tomorrow!

Our fellow heart mama, Terri, is going to change the insurance industry for everyone!! She got us an interview with a CNN reporter for tomorrow. They are doing an hour long special about insurance!!! Why us you ask.?? Well, what a story we have to tell. The parents of two healthy boys, then...to find out we're pregnant with a third boy that has a heart defect and DiGeorge Syndrome. This is shocking considering we're both healthy, non-smoking, non-drinking, non-ANYTHING kind of people....that just wanted to have another healthy baby. Now, 5 heart caths, 1 stomach surgery, 2 open-heart surgeries later...three weeks before Christmas...the AWESOME dad of our household gets fired from a job we've been with for almost 10 years. Now, Isaac has appointments with a specialist almost every week. He needs mouth surgery this spring, he will need another heart surgery at some point, AND his t-cells are low and we'll find out next month if he needs to go to California for bone marrow studies. So, we are out of insurance as of January 1st. Hopefully, we'll find out how much Cobra is this week..BUT, without a job...How do you pay for Cobra?? We will be SURE to tell CNN our entire story...the good and the bad...and I'm SO GLAD that they realize the need for such stories to be told.

NOW...that being said...I have to CLEAN my house and get some sleep....We need to look fresh for the cameras tomorrow!!! (well, as fresh as you can when you're waking up every 3 hours to start a feeding pump, change a diaper, or pat a little bum to sleep).

****Pictures****

I didn't have time to write captions under each one...and there are some turned sideways...(just lean to the side to see it!).
Isaac is doing good. Still retching..but, we're working on it!

I know...I know....where are the PICTURES??!!??

Well, I still can't find the cord and my computer doesn't take the camera memory card. So, I was going to upload the pics on Joe's computer...but, his is having issues today. Eli's computer is SO old, it's only useful in getting him on the internet...and Chris's computer...well, I can't find it! He must have taken it upstairs...(He's in BIG trouble!)...

So, bottom line.... We have 4 computers in this house...and I can't get a picture uploaded on any of them! (oh me!)
Tomorrow, Joe is going to watch Isaac so that I can take Eli out shopping...I'll get a new cord then (I PROMISE).

As for Mr. Isaac....we went to see Dr. Baron today (Gi doc). We increased the amount of corn starch we put in his milk. That's right...corn starch! It helps lower his blood sugar. So, right now we're putting 1 tablespoon for every 5 oz of milk...but, I can go up to 1 teaspoon per ounce if we need to. (WOW...that'll be some THICK milk)!! He didn't have a fever today. He had a lot of retching episodes today...but, each day is getting a little better. He's back to his normal feeding schedule of 5 ounces of milk every 4 hour (and I give it to him over 1 1/2 hours)...still using the feeding pump. We haven't tried baby food in a few days...he's just been too sick. He weighed in at only 15 pounds (he was 16 1/2 pounds 2 months ago!). He's currently not even on the charts...but, I'll work hard to fatten him back up (he's still in size 2 diapers...and they're almost too big!!)! The incision on his chest is healing great! He reaches for toys now and it's SO cute! Still a bit of a bobble head...and sitting up by himself will not happen for a while. That's ok though...I'll keep snuggling him!! Eli and Chris have been the best helpers and big brothers (almost TOO helpful!) and my Joe....He's been working on my "Honey Do"list like a champ and giving me much needed breaks! I LOVE my boys SO MUCH...all four of them....(well...until I go in a bathroom after one of them...)but, overall...LOVE THEM!!!

Chris is having a few guys over tonight to watch movies and play video games...Joe is in the garage working on his jeep..Isaac is alseep...and Eli and I are watching the Grinch....What charmed lives we lead!!!

Sorry...I still don't have any cute pics posted...but, we had a BUSY day!!
Here's how it went:
**Chris's alarm clock went off at 6:30...and like the great kid he is...he got himself up and started eating his breakfast. (Joe and I were DRAGGING trying to get out of bed!)
**Joe helped get Chris off to school and and I got Isaac ready to get up and downstairs (which entails getting all of him, his supplies, and feeding pump supplies gathered and taken down with him!)
**Joe showered while I got Isaac's morning feed started, while I made Eli oatmeal for breakfast, and I ate too!
**I showered while Joe then watched Isaac and Eli.
**Then...we all went out the door at 8:30am to go see Dr. Mayman (our card.)
The heart checked out GREAT! No fluid around the heart. His sats were 97!!! WHOO HOO! We decreased the amount of lasix he gets to only once a day. He too was a little worried about how Isaac's fever and behavior has been this week, so he called and got us in to see the pulmonologist this afternoon! But, first, we had to get blood drawn and a chest xray.
**So...we drive to the other office (15 miles away) and ATTEMPT to get blood from Isaac. Three nurses and 5 tries later...and faces that no mom should have to witness...Isaac was not giving up ONE DROP OF BLOOD to them. They talked to Dr. Mayman and decided that it wasn't worth torturing him any longer. (We have to go in next week for the rsv shot...and if he's still feeling bad, we'll try again then).
**NOW...feeling defeated...we go downstairs for our chest xray. UURRGHHH!!! They tried to lay Isaac on a table where the sheets were all rumpled...because SOMEONE ELSE HAD BEEN LAYING ON THEM! Then, one lady tried holding him down and she was sniffling...GROSS...I couldn't wait to RUN out of that GERM POT room! But, we SUCCEEDED...we left the building with one chest xray in hand!
**We drove through McDonalds and headed for the house. It's now like 1:00...and I have to leave at 2:00 in order to make it across town to our 3:00 appointment with the pulmonologist.
**This time, Joe and Eli stayed home.
After waiting at the office for 2 1/2 hours...we checked out with a clean bill of health. There are no problems with his lungs. No one knows what the deal is with my little man. He didn't have his fever today....so, maybe whatever he's been fighting is FINISHED!

GUESS WHAT??
After we left the pulmonologist's office...I drove over to Terri's house! Finally...we met! What a cutie pie Matthew is...and Terri is as beautiful as her pictures! And...she gave me some of her xmas treats that she made (I ate a few on the ride home).

So..it's 9:30, the Biggest Loser is on, Chris and Eli are asleep upstairs, and Isaac is asleep right here! What a productive day!!
Oh...I FORGOT...when I came home tonight...Joe and boys had cleaned the house AND cooked dinner!!! What an AWEOME DAY!!! I couldn't have asked for a better one!

Isaac STILL has a fever. (Just 100-101..but, still high for him). This is day SIX....I'm not sure if I'm convinced that it's still a virus. He still has no cough or runny nose. When the fever comes, he will start to retch until he spits up (or throws up...because sometimes it's a lot). So, I stopped the milk again and started the continuous feed of pedialyte. I just checked his sat levels, and he's in the low 90s. urrghhh. He's wheezing a little today. He is normally on morning and night breathing treatments (2 each time)...but, because of the low sats and wheezing, I just gave him another round (maybe that will help). We see Dr. Mayman tomorrow....GREAT! He'll find the problem and tell us how to fix it!!!

So, I still can't find the cord that attaches the camera to my computer...but, my brilliant Joe just reminded me to take out the memory card and upload the pics onto his computer!! (Why didn't I think of that??) So, I'll work on that tonight!

one more thing to add...

Isaac ate HALF A JAR OF CARROTS!!!
Whoo hoo. It was 6:30, and I decided to just give it a try. I gave him the Nuk brush to play with and stick in his mouth, while I would squirt a tiny bit in his mouth with a syringe (I mean TINY...like 0.3ccs at a time). After 20 minutes, the jar was half full and I decided to finish on this high note!!!

He's been snoozing in his swing for the past 2 hours. I'M SO EXCITED!!! It's a MIRACLE! Even if he doesn't eat another bite for a year...I'm SO glad for this small victory!!

Oh..it's such a BUSY day...Here we go:

**I can't find the cord that attaches the camera to the computer to download pics. (I'm looking, I'm looking)
**Joe and Eli hung the xmas lights outside this morning (FINALLY)
**Chris decorated the other xmas tree this morning (very cute)
**Joe no longer works in the mortgage industry. CRAZY!! It's been our world for the past 10 years. It's a good thing that Isaac has turned us into positive and patient people...or this would drive me INSANE!!! (Now...I have my husband around to work on my honey-do list....He might not like it, but he humors me!)

(Yes...you read correctly...and as I've promised in past posts....I will not speak ugly about situation.) But, I am SO glad that our shopping is done and we have already started making small changes in our lifestyle to accomodate Isaac's medical needs. We're too happy, strong, and wonderful people to let a little thing like a JOB ruin our spirits. Where one door closes, another always opens. And....I'm looking at a LONG hall of doorways, we're fortunate that we get to choose which one to open! (I'm Joe's cheerleader!!! And I take my job very seriously!)

Isaac....he STILL has the 101 fever! (Could a virus still cause a fever this long...this is day five!) I started him back on my milk today (not fortified). I'm feeding him 2 ounces, every 2 hours (over the length of one hour). Which...keeps me BUSY! He's retched a few times....but, nothing like a few days ago. He's just not his happy self yet. (But, his cheeks are PINK...can you believe it!)

So...I have plans to make hamburgers for dinner...and we'll put our lawn chairs out in the front yard and gaze at our lights! (just joking...but, wouldn't that be fun!)

OK...you are all GENIUSES!!!
The pedialyte is working like a charm!! He's taken a good nap today, he hasn't retched once, AND I'm keeping up on the Motrin and Tylenol so we haven't seen a fever yet!!!
He's laying back now watching Ellen...a man after my heart!!!

We FINALLY have the Christmas tree up, the garland on the stairs, AND the other tree put up (you see...MOM bought more ornaments...so, now we have enough to decorate TWO trees.) So, I'm letting the kids decorate that tree. I will take pics tonight and try to upload them! They're SO excited. And Joe PROMISED that he'd hang the lights outside tonight and put out all the reindeer lawn decorations. (our neighbors house looks SO good and ours looks like the grinch lives there!)

It's been such a CRAZY year...and if we had no presents, no trees, no xmas cookies...I'm SO Thankful that we have each other and three HEALTHY (ok..kinda healthy) BOYS!!! They are more than we could ever dream of having!!!

Ok...it's 2am and Isaac has been retching non-stop for about an hour. He's on a continuous feed (which is suppose to be easier on his little tummy). He's only getting one ounce an hour. Well, he's thrown all that up already! He's still got the fever of 101. Maybe we'll just stop the feedings for a little while, get the fever back down, and start them back up. GEEZ!!! I've tried talking to him and telling him that if he'll just start eating FOOD that this might all be better. (He just smiles back at me...ignoring me like the rest of the boys do)!

Isaac still has a low grade fever...100-101. This is the third day. I called Dr. Mayman's office...and Terri was right...he's out of town. But, the nurse told me that she didn't think his symptoms sounded like his heart. She told me to see our pediatrician. Now...I've told you that our pediatrician is scared of Isaac...he always just tells me to go to the hospital. So, we saw a new one....and she was AWESOME! But, just told me that Isaac probably just had a virus and it needed to run it's course.
We also saw Dr.Kogut, the surgeon who did Isaac's g-tube surgery. He started leaking around his g-tube site...about 1/2 ounce each feed. She just added a little more water to the balloon...and told me to just keep him on continuous feeds day and night for a few more days. He hasn't retched since starting the continuous feeds. So, we'll see!!!
My mom went back home today. We're all SO SAD!!! She did SO much while she was here...even cleaned my room! I love you mom...thanks for taking care of my butterballs!

Oh...my sweet Isaac followers...I have some stinky news to tell!
Isaac has retched about 10+ times today. His blood sugar is up in the 200s again, his mickey button is leaking about 1/2 and ounce with every feed, AND he has a FEVER...(and last night, he was sweating alot and breathing heavy)...
So, I'm going to see the surgeon AGAIN that put the gtube in. (Because of the crazy leaking and the sudden retching)...I'm calling Dr. Mayman to try to squeeze in tomorrow....and I just hope he's not coming down with anything. I suctioned his nose out this morning and got some boogies...but, nothing since. He is coughing....but, only a little before he wretches. He's drooling like a mad man (so, maybe it's teeth trying to come in)...
He went from my happy guy to my stink-pot...like overnight!
He's snoozing on the floor right now, with a cool rag on his forehead (he likes the rag when he's distrought!).

Everyone please say your prayers for Mr. Mason Manning. He's in surgery as we speak at Stanford. click here to see how cute he is!

I've started updating this blog for two days now....
FINALLY...I have a minute! Yesterday we saw Dr. Sirsey (our pediatrician). Isaac weighed in at 14 lbs 8 ozs. Today, we went to see the surgeon who did the g-tube surgery. They put a little silver nitrate on a tender spot...and he didn't even cry! WHOO HOO! Then, Mark (speech therapist) came over to work with Isaac's feeding. Well, Mr. Isaac was in a STINKY mood and would not cooperate. So, no food was swallowed this day! I hooked his feeding pump up tonight and it became disconnected somehow (i don't know how)...and his entire feeding went in the crib! What a MESS! (well...for Joe. He was watching Isaac for me while I ran out. Sorry babe!)

So, tonight I hope we all sleep! This morning about 3am Isaac started crying. So, I got up, started a new feeding, changed his diaper...and he would settle down, I'd crawl into bed...start dozing off...and WHAAAA! So, I'd get up, check the diaper, feel him to make sure he wasn't too hot or too cold...and he did this until 5am!!! Oh my GOSH! Finally, I decided to reach in and pick him up...and his back was WET! Now, I have never figured out how boys pee out of the back of their diapers...but, poor little guy was trying to tell me for 2 hours that his jammies were wet! Oh, I felt so bad! So, I changed his clothes and put him in bed with me (which, by now is about 6am). Before I knew it...it was 6:45 and time to wake up Chris for school! UURRRGHHH!!! And we've been up ever since!

My days are LONG...and still I haven't had a chance to upload any pics. Isaac is awake ALL day! He is not as fussy today...just requires my undivided attention. Eli slept with me last night...and at 5am...threw up. Good Morning MOM! He's got a fever now...YIKES...I'm keeping the boys on opposite sides of the room...and washing my hands far too much (they are so dry!). Joe and Chris come back from their "holiday" in Utah tomorrow. (thank goodness!) Isaac ate a few spoons of banana baby food today (baby steps, baby steps)...and NO WRETCHING since the heart surgery!!! And...I did a little xmas shopping online. Just boring details to report. YEAH!!!
We're SO glad to be home!