RollersInVegas

A conversation with Eli yesterday when I picked him up from school:

Eli: MOM!!! That Katelyn Mulligan...she kissed me on the arm today at lunch.
Thomas must have paid her off
Me: Ewww Eli...you let a girl kiss your arm??
Eli: Well, actually....I'm not so sure if Thomas would have the money to pay her off...
maybe she likes me! We might get married!
Me: That's great.


Today at pick up:

Eli: I need hand sanitizer!!! Katelyn kissed me on the cheek today!!! I need to rub it all over.
Me: Eli...why are you letting a girl kiss you??
Eli: We're getting married. I told her mom that she kissed me too.
Chris: Don't get her in trouble Eli!!!

tonight while on the phone:
Eli: Yes...I'm getting married. At least there's always divorce. God Bless America!

Seriously...
This is what I live with!

So...that's what's going on with Eli. We just dropped off Chris and a friend at the football game at school (that's a little scary!)

Isaac....he ate about half a jar total today. He's opening his mouth today...but, he doesn't just swallow the food (like, he doesn't know what to do just because it's siting in his mouth)...but, when he's chewing on the chewy tube or nuk brush, he swallows. Go figure!?!?!

Now...I have a new family to introduce you all to. The Lee Family...they have twins girls and baby Logan (who's one). Logan is the heart baby...such a cutie pie! I was able to finally talk to Karen today and she couldn't be nicer! SO....would you please stop by and say HELLO...she just started her blog up, so I told her that you guys would remind her often to update it!

I hope that everyone has a great weekend!!!

fyi...Joe has to work tonight until 10pm!!! Ok...I'm going to post his resume on this blog and you guys can find a job for him near you!!! (or, I'll post mine, I'll work and he can watch little Isaac!...that sounds better!)

I'll post pics tomorrow...

But, I have NEWS to share:

Isaac ate almost a FULL JAR OF BABY FOOD at one sitting today!

Well, it was half stage 2 bananas and half stage 3 lasagna...but, together...it was almost a full jar! He even opened his mouth for the spoon (I didn't shove it in)....YEAH FOR ISAAC!!!

All of our wonderful therapists came over today...and Isaac ATE AGAIN! YEAH FOR ISAAC! So, twice today...he ate!!!

Chris and Eli are doing wonderful. Working hard at school, playing hard when they come home...and eating ALL my food!

JOSEPH...made it home by 8:00....oh, it's my Christmas miracle early!!!

All is well on the crazy Roller front....

Nothing much going on here....but, if you must know...here it is:

5:15am--get up
5:15am--wake Chris up
5:20am--wake Chris up AGAIN
5:30am--help him get ready for school and make his lunch
5:45am--get myself dressed and Isaac's feed ready
5:55am--take Isaac to the stroller and start feed
6:00am--walk with my sweet neighbor (it's at least a mile)
6:30am--return home and eat breakfast (we're slow walkers)
7:00am--disconnect Isaac's feed and give him a bath and dress him
7:30am--wake up Eli--remind Joe that he is LATE
7:45am--wake up Eli again get him ready for school and make his lunch
8:30am--take Eli to school and come home
9:30am--get call from Eli's school that he's having trouble breathing
so, I call the peds office and get him an appointment
10:00am--I'm at the school picking up Eli and head to the peds office
10:45am--we've seen the ped, his allergies is aggravating his asthma. He has a new inhaler and antibiotics (because his ears are a little infected)
11:00am--we're home and eat lunch...I ask Eli to return to school at noon (he's breathing fine)
12:00pm--take Eli BACK to school
1:00pm--Pick up Chris and other kids from HIGH SCHOOL and take them all home
Drop off Eli's prescriptions
3:00pm--pick Eli BACK up from school
3:30pm--some kiddos come over to spend the afternoon
I'm making snacks, dinner, tutus...just playing with these cute girls
6:00pm--girls are picked up
6:30pm--friend from church comes over....LOVELY visit...wish we visited with each other more often
7:00pm--pick up Eli's meds
7:30pm--Eli takes a bath
8:30pm--the boys are in bed
9:00pm--Eli is OUT of bed...he's coughing too much.
Cool mist humidifier is filled up and turned on
Eli is miraculously cured.
Chris is trying to talk to me.
Isaac is fussing at me.
Joe is STILL at work...and I haven't heard one word from him all day (I hope he's
alive)
9:20pm--I will finish this post, load the dishwasher, pat Isaac's bum to sleep, give him final meds for the day, nebulizer treatment, clean off the table and cabinets, start another load of laundry....do you think I'll make it to bed by 10:00 to start Isaac's last feed (that I have to stay up until 11:00 to turn off and flush)?

I'm just playing with you guys!
Not really...that's EXACTLY how our day went (and I didn't even throw in all of Isaac's feeds, meds, and pt work outs)....I just don't understand with all of that activity...how am I still not losing any weight?? That's all I want to know?? I suppose it could be that I've been CRAVING cinnamon toast. I eat it ALL day. Just toast, smothered in butter, with sprinkles of cinnamon and sugar on top....OH MY!!!

Nora (our great PT) and Nicole (great dev. specialist) come over tomorrow. I wish Isaac had a new trick to show them, but...he's doing the same. He's rolling all over the place...even bonks his head into the fireplace. (maybe he should wear his glasses more so that he can see what he's rolling into!!!)

Hope everyone had a SUPER Wednesday!!!
Chin ups everyone...seems like everyone is having some downer days. Would someone talk to some big company and have them sponsor a HEART MAMA VACATION PLEASE....where kids are allowed to go, but are totally cared for by private nurses!! Wouldn't that be heavenly!

We did...we all survived the first day of school! Chris woke up (by himself)...took a shower, got ready was out the door before 7AM! Eli...was in the garage to see Chris off and just hung out on the couch with my until he was ready for school at 8:30. THEN, it was just ME AND ISAAC...pure heaven! We had an eye appointment. Nothing new to report. She said that we won't start patching his eyes for a while...but, that is FOR SURE in his future (sorry little man!).

Chris got his schedule today...and his electives are computer and Japanese....he LOVES IT! I almost cried when I drove up to the school to pick him up...I just can't believe it!

Eli...had to move his stick in class today once (for talking)...but, he assured me that he was back on track before the day ended. (He's got a little girl named Katlyn sitting beside him....and they talk too much).

Isaac wretched a few times this morning...but, I lowered his amount of milk, added more pedialyte...and he's been fine this afternoon.

It's almost 9pm...and JOE IS STILL AT WORK...not even CLOSE to coming home.....urrghhh.
I'll keep wishing on a star that one day we will be able to live off love and not money!

**Please continue to keep Johnny and his family in your prayers. I hope that they can feel how many people are praying for them and they feel enveloped in all the love and will find peace.

This post can't be about Isaac today...but, our heart baby Johnny. He lost his battle today, and it's just too hard to even think about. I am thankful to have Isaac here to hug, but can't even imagine how hard this experience is for Dave and Lea. Our prayers are with your family during this time.

I guess we'll try the Steelers hat tomorrow!

Our day started off just horrible with Isaac. He was wretching and throwing up...just ridiculous. Then, one time he just started choking and gasping for air...turned bright blue, and I had to pick him up and just shake him. (he's killing me slowly with these episodes!). But, I'm pleased to report that since lunch, he's been just fine. I don't know what's going on with him.

Chris and Eli went to the movies today (I guess that was just too much excitement for poor Eli!).

School starts on Monday....YEAH...Isaac and I will PARTY!!!

This is just a short and sweet post:

The boys are fantastic!!!

**Isaac had an awesome day! No wretching, throwing up...he was off the O2 the entire day. He ate a few cheese puffs with his dinner feed. AND..he rolled all over this house tonight...he's amazing!

**Eli...was able to meet his new teacher today. He has a few kids in his class from last year...and...he spent his evening yelling outside for the aliens to come down (again!). I wish someone would dress up like an alien and come running into our backyard and scare him!!! (isn't that mean of me!) Oh...and Eli woke up this morning and called it "brotherhood day"...brothers older than 3 were suppose to play games together all day! Chris was such a good sport and played with him longer than usual.

**Chris...is tired of brotherhood day and went to a friend's house to spend the night.

**Joe...worked LATE again and has to go in tomorrow:(

****BUT, the most important thing I wanted to tell everyone is a little reminder about tomorrow (Saturday)...ok, it's Leah's birthday party (Happy Birthday Princess)...but, it's also the $12 jean sale at Old Navy ($7 for kid jeans). AND if you order online, there is no limit and shipping is a flat $7 (I will not tell you that I've already placed my order..nor, will I tell you how many pair I bought at that FABULOUS price...but, I can tell you that the boys are ONLY wearing Old Navy jeans this year!)
Just my bargain shopping tip of the day!!!

Have fun shopping!
Thanks for checking on us. And thank you for keeping Johnny, Elaina, and Elijah in your prayers.

I heard from Dr. Mayman today about the holter results...and.....his heart is just fine. ALTHOUGH, he did agree with me that his heart rate is too high for no reason (because my man is always at rest). His rate does go down when he's sleeping...but, if he's awake...it's beating too high. But, the echo and ekg show that his heart is healthy. SO, Dr. M wants us to get some blood draws to check his iron levels as well as his thyroid functions....those were the only other areas that he could think of that could be causing the rapid heart rate. So, he's had this higher rate for about 3 months now. But, now that it's really documented...he's going to just keep watching it. Who knows??

Isaac only threw up once today. I kept him on the O2 (to let his body rest) and mixed all his feeds with pedialyte (1/2 of each). He would not touch any food today...but, I did get him a new pair of shoes...and they must have tasted good!! (he's in size 3 now....whoo hoo!!!)

Eli got changed to the track that I wanted!!! YEAH! We go to orientation tomorrow afternoon...he's SO excited to get back in school and get more attention (because I'm such a slacker!). Chris also got his homeroom assignment and can't wait for his first day of HIGH SCHOOL (oh...I'm shaking in my boots!).

and...my sweet Joe is still working. I miss him.

SO...I will vent a little about something that keeps popping up on the news....vaccines! I know all the heart mama's understand why all HEALTHY kids need to get vaccines...but, non-heart mama's might not understand that our kiddos are SO immune compromised...and us heart-digeorge moms are even MORE compromised. I understand the implied risk of autism they think may be linked to the shots...but, if Isaac got measles....or even chicken pox...he would die! SO, I know that children with autism have a hard life....but, I'd rather have a child with autism than NO CHILD AT ALL. Eli even needs another chicken pox shot...and he can't have it because Isaac could catch the virus and then he'd have to battle it out in the hospital...and with his low t-cells...they said that he wouldn't win. SO...I'll probably need to start writing news stations and magazines and interject my opinions....just thought I'd share (and I know that Vanessa is giving me a big "AMEN SISTER".....)

and...something else....please pray for baby Johnny again. He's not doing good at all...and I know that we felt all your prayers for Isaac why we were in the hospital (everytime). Be brave little Johnny...too many people love you!!

Well, I took pics of Isaac tonight, but....then, he started wretching and throwing up...so, the pics look too sad to post. BUT, let me tell you about our card visit!!!
**His pulmonary arteries are not showing much narrowing, his right ventricle is not too big, and his valve leakage (on a scale from 1-10) is a 6 (10 would mean that we needed a valve replacement. Dr. Mayman said that we should be able to sail through this winter without a heart surgery...maybe even a year or two (fingers crossed!) BUT, we are a little concerned about his rapid heart rate....so, we did a BNP (that's the blood test that measures some hormone in the body that shows if he's in heart failure)...they didn't call me back today...so, I'm hoping that the numbers were within normal limits. THEN, they sent us home with a holter monitor to just monitor his heart for 24 hours to see if anything silly is happening. (we'll get those results Thursday or Friday). He did DOUBLE our blood pressure meds...but, other than that...we don't have to go back for THREE MONTHS!!! whoo hoo!!

He's still wretching and throwing up...no reasoning behind it...he just does it....then, it takes all his energy, so he sleeps for an hour. poor little thing!

I don't think that we have any appointments this week....so, YEAH FOR ME!

**Our little heart friend, Johnny, is in the hospital today recovering from a heart surgery...please keep him in your prayers and stop by and give his parents some words of encouragement. (they are such a sweet little family)

Mr. Isaac is looking good these days. He needed the O2 today...but, other than that...he's a champ. (only one BIG wretch today...no throwing up!!)

We made it to church today, just the first hour...and it was SO NICE! All the boys look so handsome all dressed up...and the speakers today were great...what a nice way to start to our week!

I need to tell you how wonderful my JOE has been....he's the best husband! (But, you need to know that I didn't find him this way...this took years and years of the proper training...and my (our) hard work has paid off!!!) Even with all the crazy hours that he puts in each week, he was able to do so many special things with the boys this weekend. Watching a movie with JUST Chris, taking them to the game store, to get Icees'...gosh, so many other things I can't remember...AND he even let me take a nap with Isaac Saturday and today!!! What a sweetie pie!

Chris and Eli....it's their last free week before school starts! This was also the last night that they got to stay up late...Eli wanted to make sure he "partied hard" before the night ended--needless to say, they are both sound asleep in their beds!

You know...Isaac was on the floor last night just laughing and smiling...just looking at the ceiling...and I told Joe..."if he never walked or talked....I'd be ok with that...as long as he could smile at me and let me know that he was happy." I think that one day he will talk and he will walk...but, I truly mean that....as long as I could tell that he was happy or unhappy....I'd be perfectly happy. He's such an easy going babydoll...he just melts my heart every day when I look at him. And I can't get over how well Chris and Eli do with him. Isaac will have a bad throwing up episode and turns bright blue...and I don't even have to say anything...Eli will run upstairs and make sure the O2 machine is turned on and ask me if I need anything. Chris has been really good about spending extra time playing with Eli (since Isaac seems to get more of my attention)....everyone is finally in this great groove at the house...everyone helping out each other and taking care of everything....they just make me SO proud.

So...enough about my perfect boys (and big boy Joe)....we're all doing great. I don't think we have any appointments scheduled for Monday...but, Tuesday we see the card...so, fingers crossed the pa's are WIDE open and the leaky valve is not leaking anymore than it usually is!

oh...and I forgot to tell you. He did take little chunks out of that cheese stick..he actually swallowed some...and choked on some. He wouldn't lick the apple twice and the vanilla wafer made him shake...literally, I think because it was the soft one with cream inside...he must not like to hold soft, squishy things.

It's been a busy day...with lots of nonsense....but, we all survived it! Isaac is still wretching his little head off. I kept him off the O2 today...he wretches...I put him back on, he wretches. We'll get the heart checked out next week...and if it's not that...then, when we see GI again next month, we may need another upper gi and I'll ask them to check him for a hernia (our surgeon said that a hernia would also cause all this wretching and throwing up....)and I'm no doctor...but, all this straining from wretching and throwing up could cause one NOW even if it wasn't there before.

there.

Eli...has been working his little bum off (like his daddy). We buy small toys for him and place them on a shelf...and he has to EARN them before he can open them. Well, he has these two new star wars toys on the shelf...and normally, it takes one week of allowance to earn a $5.00 toy..but, every time I turn around...he's asking for another job to do. He's cleaned the toilets, taken the bathroom trash out, vacuumed the floors, dusted....gosh..so many helpful things...OH, and my favorite is....patting Isaac's butt so that he'll fall asleep!!!

Chris...is always on my last nerve (poor thing). He went swimming with a friend today and did his normal chores (he didn't ask for anything extra to do). AND...he deodorized his armpits today...YEAH FOR CHRIS!!!

That's about it...I think Isaac's pt comes tomorrow. I just love her....and Isaac does too!

Where are the pictures Kathy??

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

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

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

We didn't make it to church today...everyone was just too exhausted from all the adventures of the week. Isaac was on the O2 again today...because he keeps wretching his little head off...but, he isn't throwing up too much (so, I guess it's good that the milk is staying down)....

Hope you enjoyed all the pics!