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...

Tuesday, September 29, 2009

Well...we had our cardiology appointment today and Isaac's leak
is EXACTLY the same! yep...he's a 6 (from 1-10). SO...no immediate
danger and need for surgery!!! His right ventricle is enlarged (almost twice it's size)..
but, that didn't seem concerning (I guess it goes along with the defect). He
has some narrowing in his pulmonary valve...but, nothing to act on just yet.
His EKG was normal (for him)...only showing a high heart rate of 165 (while
sitting perfectly still...NOT crying). hmm...
So, we have the holter monitor for the night.
He is enjoying eating it...
little stickies all over his chest and belly...
I can't keep his little hands off of them!
he's getting grumpy...
oh wait...he just wanted the camera strap
(i knew that)
So...thank goodness( well, not really)..but, he had one of his episodes tonight where he wakes up from a sleep (abruptly) screaming bloody murder. I plugged in the sat monitor, he desats into the low 80s (because he's screaming so hard)...his heart rate didn't get too high...but, it's these episodes that he does off and on...and I just don't know if it's heart related or not...anyway...glad it's on the monitor tonight for them to look at.

We doubled his Enalapril (blood pressure meds)..hmmm...I didn't get an explanation...maybe just because he weighs a little more. (I hope). It was so great to see my favorite nurses and our wonderful card...just makes me happy to report good news!

AND....I hope no one cancels...BUT, we SHOULD get fitted for our old man walker tomorrow.
YEAH...I can just see him now...chasing the boys...I will be a crying fool!

Eli got "Beatty's Best" at school today. That means he was like the "student of the month". He just smiles...because he gets picked every year. This will be the THIRD picture of him holding his award on our fridge. Yeah for Eli.

Chris has a sub in geometry this week...oh, we're never going to get ahead!

and that's all I can say...because if I can't say anything nice....I shouldn't say anything at all.
(but, i'm thinking things....if only you could read my mind)

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Monday, September 28, 2009

Here's a little video of Isaac taking a bath in the kitchen sink...
(i kept his little boy parts covered...no worries)

Tomorrow morning we see Dr. Mayman (our cardiologist)...I'm so excited. He will be able to give me the valve leakage number (remember...it's on a scale from 1-10...10 is ready for surgery--Isaac was at a 6 last time (about 6 months ago). And....we get to come home with the holter monitor. (how fun!)

and we get fitted for our old man walker on Wednesday...what a week!

OH...and Isaac was CRUISING today. You know...where he walks along the couch (while holding onto the side of the couch). Yep...he took about three steps, while holding onto the side...trying to get a toy...but, he did it!
and he's still able to wiggle out of those leg braces...I have NO IDEA how he does that.

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Sunday, September 27, 2009

I'm a LAZY mama...
I'm still giving Isaac baths in the kitchen sink...

is that wrong??
It's not my fault that he still fits...
I'm just traveling up and down the stairs all day...
and my tub is HUGE and he just falls over when he's in it..
and it isn't sanitary to walk into the boys bathroom...
what can you do?

Now...onto the important part of this post.
I am the SOLE caregiver of Isaac.
Joe MIGHT change a diaper on the weekends...
but, he has NO IDEA what meds Isaac is on or what he eats...
how much or where everything's at.
SO...if I was ever sick, in a car accident...anything...
no one else knows what to do.
Thus...here are the directions for taking care of Isaac.
(please show Joe where this post is at if he's ever in need)

Beside the kitchen sink are the syringes...
I wash them about every 2 days.
yep...that's how many we go through.
After they're dry...I put them in a purple plastic basket beside the fridge
(in case he doesn't know where to find the others)
Also beside the fridge (hidden away from visitors view)
are Isaac's meds.
yep..and those are just the ones that aren't refrigerated.
Seriously...this isn't to brag about all that I do each day (even though someONE needs to be reminded constantly)...but, I need all the info in one place for emergencies.

SO...here we go:

6:00am...Isaac is asleep. Hook up feeding pump. The bags are in the closet under the stairs. The pump is set to deliver 215 cc's at a rate of 330cc's per hour. Add ONE full can of Nutren Jr. with Iron and 2 oz of water (add the water or he can't poop). You have to "burp" him through the g-tube before starting his feeds. Change his diaper while he's asleep if it's full...or, he'll pee right out!

7:00am--the feed is finished. Flush him with a full 10cc syringe of water. Remove the g-tube extension.

8:00am--he usually wakes up talking.

9:00am--after taking Eli to school...time to give Isaac a bath. Once he's out of the bath...dry him all the way. Then, rub lotion (in the basket by the couch) all over his legs, arms, hands, feet, face....every little crack. If he has bad eczema patches, put Mometasone cream on those spots. Clean under his mickey button with a q-tip...then, put a split gauze under it, and tape it with a small piece of clear plastic tape (all those supplies are in a zip lock bag in the same black basket by the couch)..that's also where the special creams are located.

9:30am--start getting his feeds ready for next feed. If he's having a good day: he'll get 4oz of Nutren Jr (no water added)...then, in a bowl, put in about 4oz of yogurt. Then, add one scoop of duocal (for calories)...and then add a little rice cereal (or wheat cereal) to thicken it up a little (he isn't swallowing thin foods very well). His bibs are in the guestroom in the top drawer of his dresser. If he's having a bad day....NO foods by mouth. He needs the same feed as his 6am feed...a full can of nutren jr. and 2 oz of water. BURP via g-tube before starting either feed. BUT...before feeding, he needs his morning meds:
Prevacid---put 4cc's of water in a syringe and then in a cup...add a prevacid tablet, ,let it dissolve and then draw it back up in the syringe. (this is beside the fridge)
Zyrtec--5ml's (also found beside the fridge)
Baclofen--0.4ml's (in the fridge--white med)
Enalapril--1.0ml (in the fridge--blue med)
**Important to flush each med with about 5cc's of water...between meds. So, also draw up two 10cc syringes of water to flush after each med.

10:00am--now...you're ready to burp him, give all those meds, and feed him.
It's been taking about an hour to feed him that yogurt by mouth, put him in the bouncy seat, put the bib on, and turn on Yo Gabba Gabba if you want him to eat. You give him a bite of food, then about 5ccs of milk in his tube...keep alternating food and milk until finished. Flush milk with 10ccs of water when finished.

11:00am--clean him off good. He'll have food all under his chin and you'll probably have to change his shirt.

2:00pm--he needs Baclofen again (0.4mls--white med in the fridge) and start another feed. He's usually tired at this time...so, it's feeding pump feeds. ONE full can of nutren jr. and add 2ozs of water (and if he hasn't pooped today, add 1/2 capful of Miralax to the milk in a bottle, shake it up, and then put it in the feeding pump bag). Remember to clean out the feeding pump bag after EACH feed. Also, remember to flush milk in tube with 10ccs of water.

6:00pm--Needs meds and another feeding.
Dont' forget to BURP through tube before giving meds.
Cut one baby aspirin in half, dissolve in water...and draw up in syringe.
Also needs Baclofen (0.4cc'c white med in fridge). Draw up 10ccs of water to flush between meds. If he's happy and awake...he can eat by mouth. Put 4 oz. of nutren jr. in a bottle, and put a jar of babyfood (stage 2--small jar) in a bowl. Add 1 scoopful of duocal and rice cereal to thicken it. Feed as above...about 5 ccs of milk, then a spoon of food...alternating between both. If he's having a bad day...feeding pump feeds again. (full can of nutren jr. and 2ozs of water)
Flush tube with 10ccs of water after eating and clean feeding pump bag.

10:00pm--night meds:
BURP tube before adding meds.
Prevacid--1/2 tablet dissolved in water and then drawn into syringe
Singulair--1 tablet dissolved in water and then drawn into syringe
Baclofen--0.4mls (white med in fridge)
Enalapril--1.0ml (purple med in fridge)
he should be asleep or close to it..so, it's feeding pump feed. ONE can of Nutren Jr and 2ozs of water. Don't forget to flush tube with 10cc's of water after feeding. You can throw the bag away now...we'll get a new one in the morning.

**once he's asleep...put pulmicort in the nebulizer and let it blow in his face. If he's awake, put the mask on the nebulizer and hold him in your lap while he gets the breathing treatment.
**if he's sick or wheezing...he also gets xopenex every 4 hours as needed. This will go before the pulmicort.
**if he's sick and has a fever...he gets 5ccs of Tylenoyl alternated between 5ccs of Motrin.
**if he has an ear infection...he has drops to put in his ears (5 drops 4 times a day)
**if he has a runny nose...he can have 5cc's of benadryl (but call the doc, an ear infection is coming)
**check his sats daily. if he's below 92, hook him up. It usually only take 1/2-1 liter. The cloth tape for his cheeks is in the black basket beside the couch.
**if he feels warm...the thermometer is in the black basket...just rub it over his forehead.
**if he isn't feeling well...NO MILK at all. only pediatlye all day. (8oz each feed) Or he'll spend the day throwing up and wretching.
**sometime during the day....you need to work on therpies (pt, ot, and speech)

CHANGE his diaper before putting him to bed. (use the Huggies overnight diapers). Cover him up (even though he'll kick off the covers) Make sure the ac is turned down to 68 (or he'll wake up sweating and throwing up).

and sometime in there could you also take care of the two other boys, help with homework, pay bills, clean, make tutus, update blogs, call friends and family, cook dinner, tidy the house, clean the pool, give the dog and treat, take a shower, shave your legs, and keep that chipper attitude that you always have? (ok...now, I might be rubbing it in a little...but, just keeping it real)

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Thursday, September 24, 2009

Here's a funny video for your viewing pleasure!

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Wednesday, September 23, 2009

Eli sees me sewing tutus each day..
he LOVES money...
so, he's decided to make a caterpillar out of clay
and would like to put it up for sale for $2.00.
(grandmas...start sending money)
He told me that once this one sells...he'll make more characters.

Here are the boys outside yesterday...
oh...so cute..

I will get you Eli...
and I will get that ear...
come back here!
Here's poor Isaac at the end of our outing in the backyard....
big cheese ball!
Can you do this??
Who's the cutest baby??
Poor little Eli.
He's wanted a garden FOREVER..
and well...we only have rocks.
SO, he planted some pumpkin seeds...

we'll see if they germinate.

I have SO much to share.
How about this conversation yesterday with the boys:

Me: "Eli...didn't I ask you to help clean your bathroom?"
Eli: "I don't recall"
Chris: "mom...where did he learn that word?"
Eli: "I don't recall"
Chris:"Eli...where did you learn that big vocabulary word?"
Eli:"I don't recall"

So...Chris thinks that "recall" is a BIG word.
oh boy!

THEN...here's another Chris conversation:

Me: "I'm going to stop buying sodas"
Chris:"why...what are we suppose to drink then?"
Chris:"why water"
Me:"soda has too much fat in it"
Chris:"so does water"
Me:"it does not"
Chris:"yes it does. When you're pregnant...your belly is full of water. Then, your water breaks and you lose all that weight. See...

What can you say to that? seriously? I think my child is being left behind in school.

and here's a video of my defiant Isaac:
(mom...prepare yourself...I pop his hand)

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Tuesday, September 22, 2009

Isaac started off his day with his dork glasses on...
and his leg braces were on.
THEN, I noticed this:
one missing leg brace.
(now...how in the world did he wiggle out of that?)
I know that he appears slightly intoxicated in this pic...
and look at that messy shirt.
He isn't eating by mouth very well lately...
all the food just falls out the side of his mouth
(but...I'm still trying each day)
And...Isaac has MAD skills.
look...no hands!
STILL watching television on the poop tv..
but, Isaac loves it!
(the towel covers the wood that he's STILL trying to eat)...
and he can watch tv, eat the duck, and play with the
ball with his feet!
He'll totally be able to put "multi-tasker" on his resume!
and this afternoon...
the weather was heavenly..
I'll share those pics tomorrow...
but, here's a sneak peak!
Our day actually started last night..
I took Chris and his friend to Play N Trade to pick up the new Halo game..that they HAD to have! So, this morning, those guys decided to wake up at 5am and meet up online to play their new game together. (so sweet). Then, it was time to rush him to get ready for seminary...and I started Isaac's feeds...and went back to bed.

Eli and I headed out to school and then Isaac and I made a quick run to Walgreens to grab some deals.

I spent the remainder of the day procrastinating on sewing. I've sewn at least 100 tutus this week...oh, my back can hardly stand it~
(because each one takes about an hour)

We made an appointment for Isaac to see the eye doc next week...and an appointment for a dermatology visit (about the never ending rashes).

Tomorrow, we're headed to Old Navy (you know that their clearance racks are an ADDITIONAL 50% off--did you know that?) yep...until Friday.
Do I NEED any clothes? Nope...but, shopping is better than eating...so, I'll go spend a little and save some calories.
(that's my thought anyway)

darn it...i'd better quit yapping and take my lazy bum up to the sewing room.
so many good shows are on now..my dvr is almost full!

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Monday, September 21, 2009

Isaac has a NEW TRICK!!
just showing you a little tongue..
getting my dance on...
Yep...Isaac looks like he's going to stand up one day!!! I put his leg braces on today...but, when he was eating in his bouncy seat...he started screaming because he couldn't lift those heavy legs to bounce that seat!

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Sunday, September 20, 2009

I know...you're wondering where I've been...
Well...we've been sewing tutus like CRAZY here for the
Greek Festival.
Today was the last day...
and I couldn't be happier!!

Eli had a BLAST visiting the festival each day.
His most cherished possession is this:
(army tattoo)
While Mandy (my sister), worked the booth at the festival...
Meghan spent the days with us.
and...would you like an Isaac update??
He's as happy as ever...
looking so darn handsome...
and just melting my heart!
If you can believe it...we don't have ANY appointments this week! BUT, next week we see the cardiologist:( I'm starting my prayers early for that one...because, this is the check up to see how much his valve is leaking and if it looks like we'll need surgery this year.

We, as a household, seem to be getting rid of all the sickies! (Joe's still got a cough...but, all the kids are good).

Isaac has orders to start wearing his leg braces all day now! AND...his fancy glasses are broke again...so, that means we'll be wearing leg braces and our dork glasses. Poor Isaac. (it's a good thing we don't have to be out in public too much this week).

I can't even remember what's been going on...
just busy, busy, busy as usual.
and I am SO thankful for Isaac's good health lately.

If you have time...you could go over and leave a message for Moriah...she's not doing very well.

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Wednesday, September 16, 2009

I WILL eat my hands...
I will NOT eat cookies or crackers...
I will eat my paci...
I will NOT eat your chicken and pasta...
but...I'll smile for you...
yep...that about sums up my stinkers.
and Chris...the phantom teenager...lurks in his stinky room...he will come out someday!

I am BUSY making tutus! Yeah for me. Tis the season for Halloween costumes...AND...I'm selling them at a festival this weekend. (cross your fingers for me...let us all see GREEN!)

it's WAY too late...I need to try and nap before I have to wake up with Chris...

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Sunday, September 13, 2009

What a weekend. Joe has the yuckies that we've been battling for weeks (ha ha ha)...I mean...poor Joe.

I got up this morning and took the boys to church. YEP...all of them....feeding pump and all. YEAH for me!

I can't even remember what we did this weekend. Usually nothing but naps for Isaac and me. He's doing really good. Still snotty...but, really?

We're going to check out a new pt tomorrow (just one out in the community...we still have our sweet Nora).

My mind is just drawing blanks. We're just doing what we're doing....Hoping that Joe gets over the sickies soon.

You know that Isaac's 2 1/2 now. He's growing and doing new things each day.

He claps his hands now!!! (thank you Kelly for posting that video of Aubrey and getting him excited).
He really is aware of things that I tell him. He might not answer me, or follow directions...but, I think his light bulb has clicked...and he understands some things. (some)

When I catch him eating shoes...and yell his name. He throws the shoe quickly...as if to hide the evidence! (this is SO huge!)

When I clean up his playroom...he immediately crawls back in there and takes everything off the shelf to put it back on the floor where he likes it.

He crawls ALL over the house. He hasn't found the doggy door yet...but, I can't wait for that pic!

SO...here's a video of Isaac on his zebra. He can FINALLY sit on it without falling off...
I mean...ahhh...he can sit on it...and if he falls off, he doesn't cry.

(no toddler was harmed in the making of this movie)

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Thursday, September 10, 2009

I will eat my rubber ducky...

How about a shoe now?
and...I can play a little piano while I eat my shoe!

YUCK...I don't like that!
I feel like eating a little wood now...
the baby gate will work...
darn it...
I guess my thumb will work.

This kid is all over the place!
Thank goodness!

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Wednesday, September 09, 2009

Here was Isaac sleeping last night.

a little closer.
and a side view...
So...he's still not feeling good. I'm only putting the o2 on him at night..and he gets so mad at me. I'm still coughing up my lungs...Eli's still got a cough.

Today our little Chris turned 15! Yikes!
He had a good birthday...I think. He went off to school today wearing a Burger King Crown....
had cupcakes...and ended the night with Mandy and the boys at Hooters.
(as in Rome...huh?)
Here's a little of their restaurant visit....

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Tuesday, September 08, 2009

Here's a picture of Joe and his dad taken Labor Day weekend.
It was the "big bike handoff"....where Joe flew
back east to get his motorcycle.
We got a call today and Joe's dad is in the hospital.
So...if you could, please add Grandpa Dean to your
prayers tonight.

That's enough to make this post complete. But, I will tell you that we are all doing ok. Isaac went to the peds, and of COURSE, has another ear infection. I went to the docs and have bronchitis again. Eli still has his junky cough, Joe came home tonight coughing...and Chris turns 15 tomorrow!

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Sleeping beauty slept for 4 hours this afternoon...

but..that's why.
I just check his sats daily (mostly...out of habit).
He doesn't look blue...he was actually feeling better today.
No ear drainage and very little coughing.
BUT..his sats were in the high 80s...and would
dip in to the low 80s while he was sleeping.
So...back on the o2 he went. He screamed at me when I put the canula up his nose..but, fell right back asleep. SO...I suppose we will call the peds first thing in the morning and get in.
and me...I'm coughing up a lung. I think we're just all spreading the cooties around.

It was SO hard getting the big boys to go to bed on time. It's going to be even HARDER for me to wake up at 5:30 (especially considering that it's 12am and crazy man is still awake and so am I)

I NEED to go shopping tomorrow. Not for anything needed (of course)...I just have my eyes on a few clearance items at Target...and if they mark them any lower...someone else will snag them up!

If you don't read my coupon blog (which you should)...I've scored some pretty good deals last week (considering we've all been sick). Those Leap Frog Tag readers...normally $49.99..I got them for $2.48. yep...
and then more goodies at Michaels.

NOW..it's time for me to get ready for Halloween and start making my tutus.
oh..it's no time to get sick. I'll go swallow some Nyquil now...that should help kill the germs!

oh...and Isaac has feeding therapy in the morning at 8am (what was I thinking scheduling that early?)

obviously...NOT thinking!

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