Let's give this another try ~

i can't count how many times, I have started and restarted blogging about Carter. As usual, I 'm gonna give this another try! We have so many new adventures happening and I really want to share them and record for him! For the next couple of posts, you will see Disney, Disney, and more Disney! Maybe a little SeaWorld for a touch of spice! Get your Mickey ears ready!

What's up with Carter?

I have had a couple of people ask about Carter's health.

And since I am in one of my insomia blogging craziness,
 I think I'll do a little Carter update!

Carter is going to school, actually 2 schools and doing really well.

We have started to see the progression everyone said we would.

He is taking interest in things he never has before ~

Like numbers and coloring

The biggest change is his speech.

Instead of just not responding when people speak to him,

he is now trying to respond with the sounds he knows.

I ask him the other day if he wanted to watch Toy Story

he said yes (he has had yes & no for awhile)

I then asked him 1, 2 or 3- he said t-eeee meaning three.

A few weeks ago, he would've just gone and found the one he wanted.

Along with his speech, we are seeing new physical strength.

Carter has been going to PT for 1 1/2 years and we have seen him go from barely sitting

to sort-of crawling to walking and now almost running.

He hasn't mastered jumping off things or off the ground, but we are close.

He loves "bouncing" on the bed- I think he thinks he is jumping

Fearless, he is completely fearless.

Almost to the point we have to show him he needs to fear somethings.

He is so smart. So smart. I can see the wheels turning.

I think the changes are so obvious,

because they are happening so fast.

Most children have 4 years to transition from one thing to another...

Carter is in super warp speed catch up.

We literally see 2-3 new things a day.

Whether it's problem solving, or working a puzzle, or figuring out how to reach something on a high shelf.

I will be very interested to see what his teacher says at his first progress meeting.

hopefully she thinks he is as smart as I do.

So far, we haven't seen any cognitive problems.

but we do know that some things can be uncovered as new skills are introduced.

He has endured so much and so many drugs,

we have no idea what those could have effected in the long run

His current weight is around 27 lbs and he is 36 inches tall.

Still very short for a four year old, but I think he is growing everyday.

In May, his shoe size was a 4. A 4 is still considered an infant shoe.

When we went to get his soccer shoes, they measured him at a 6 1/2

2 1/2 shoe sizes in 3 months ~ crazy

His shorts are actually shorts now and not capri's

As far as his transplant, things are going great.

His Rapamune levels are stable and we only get labs once a month right now.

Obviously, that can change at anytime.

He is currently on 2 meds ~ his immune suppression, Rapamune & Mepron, which protects him from PCP

He does get sub-q IGG every 3 weeks to give him extra protection for his immune system.

I think the IGG has been a huge key in keeping him healthy

His feeding has it's good days and bad days.

I am told by every other mom, even normal 4 year olds have days they just don't eat.

but because we don't want him to lose any weight, he is still on tube feeds at night.

He gets Pediasure to help make sure he gets enough calories.

He is so active now, you can just watch the calories burn off

He does pretty good eating 3 meals a day and snacks.

We have just introduced him to apple juice ~

thanks to Disney for putting a Toy Story themed juice box on the shelf right at his eye level!

gotta love marketing ~ those people are genuis

I was just thrilled he is drinking it, I don't care who is on the box!

Drinking juice has been a challenge for us.

He prefers water, but now thank you to Buzz & Woody,

he wants apple juice!

Let's see... what's next?

potty training.

Well, he loves the potty. So much that he doesn't want to mess it up with poop or pee.

He thinks it is so cool to wear big-boy underwear and sit on the potty, play with the toilet paper & flush...

but he doesn't do the deed.

I'm not really worried, but it would be nice to lose those diapers.

I am taking the "in his own time" approach.

I think they also work on this at school...

that would rock if his wonderful teacher could just take care of this for me!

somedays i forget...

sometimes people stop and tell me how cute he is

... and they don't know.

somedays i think i am asking for too much....

but i wonder who sets those boundaries.

somedays i cry thinking of it all...

and he wipes my tears.

somedays i don't know how to explain it to people...

could they ever truly comprehend.

somedays it hurts to love him so much...

i pray that hurt never leaves my body.

somedays i wonder what will be...

then i give his fate back to God.

somedays i try remember life before him...

i can't. 

somedays he is all i need...

everyday he is God's gift to me.

~ i love you car-car

mommy  

Plano Balloon Festival...

Last weekend we took Carter to his first balloon festival in Plano.

We got rained out Friday night, but I think he thought the bus ride over was best part anyway.

But Saturday we were on,
with a beautiful Texas sky and great weather.

look ma, no hands...

didn't take long to find some good music...

which of course meant dancing... in the streets!

Next time I'm gonna take one of those hats you get tips in!

People were all over him!

He got to ride his first ever inflatable!

Yippeeeeeeeee

Would someone please buy that boy some camera lessons?

Carter really liked this balloon

until he saw the Noah's Ark balloon

where did he get those brown eyes?

the pirate balloon was great

I really can't say enough how much I love Carter's iPad

that smile... sheer happiness

an incredible fireworks show topped off our great evening

Huge thanks to Juice in the City who ran a deal for 2 tickets for $5- rock!

I am so excited to plug them ~ they are going to be running a Christmas photography deal for me!

Don't worry, I'll be sure and mention it about a thousand times in the next few weeks!

Very excited!

Thank you to the Plano Balloon Festival for putting on a great family event!

We'll be looking forward to next year!

back to school dance...

yes, you read that right.. a dance for 4 year olds.

This was actually friday night before the scary rash- sorry the post are out of order.

Since I have volunteered to be the chairman for the yearbook committee, I had to go and take pictures.

 I hadn't really planned on staying, but my little John Travolta was bustin it on the dancefloor so we stayed ~

so you might be thinkin....

what exactly do 4 year olds do at a dance?

Well, one kid did the worm across the floor ~

which Carter thought was AWESOME!

So- he got on the floor and did the worm

I know his Uncle Jerry is very proud!

(P.S. this could totally be where the scary rash came from )

then, my daddy got there ~ you might know that Sean is also a dancin man 

Raise the Roof !

lovin a little Michael Jackson~

abc... easy as 123...

and then more worm

Dear God, please don't let the transplant team see him on that floor.

Um, who requested this Cotton Eyed Joe Crap?

a little Lady Gaga - much better!

He wasn't so sure about being a follower in the conga line

He had been watching everyone play with balloons all night,

but they were all taken

until this lonely orange one found it's way to C

he was VERY happy

dancin with his new balloon

then he thought it was hilarious to let it go

and then get it back

over and over and over...

watching him have new experiences

gives me joy I can't even explain.

Chicken Pox Scare...

I decided to give fate a few days to make sure the "rash" had completely left the building.

you know.. like when you post a big "We're going home"!

and 5 minutes later the doctor tells you the culture from 3 weeks ago came back postive!

 I know some of you are laughin!

This is how it started...

This is when it started looking angry...

Last Saturday, a week ago, Carter came home from his soccer game and layed down for a nap. When I went to get him up, his back was covered with these little red spots. I tried not to panic, but of course, chicken pox was the first thing to pop into my mind. I got him up and he was running around acting normal and not even noticing the rash.  It didn't seem to bother him and he wasn't itching. He wasn't running a fever and really didn't have any other symptoms. I waited about 30 minutes and decided I would give him some Benedryl and see if that made them go away.  It didn't really make any difference. We had plans to meet Sean's brother for dinner, so we made the decision to go ahead and keep an eye on the rash. After dinner, we discussed going to the ER, but the rash had not spread and Carter hadn't noticed it all. Sean and I made the decision to go home and watch. We are only 15 minutes from Children's Legacy, so we didn't feel like Carter was in any danger. Carter slept great and the night was uneventful.

The next morning, we checked the rash again and agreed it was beginning to crawl over his shoulders and around his torso.  We went to the ER first thing.  By the time we got dressed and got a room in the ER, it began to morph and get angry.  We really started to panic. To add to our concern, the young ER doc was completely convinced it was Chicken Pox. Great. Even though we still questioned whether it was truly chicken pox, she insisted it was.

Chicken Pox for Carter would be very bad. VERY BAD. Most of us don't think of Chicken Pox as a serious disease and most of us even had chicken pox. It was a right of passage in childhood. Now days, children get a vaccine and the majority of children don't get chicken pox. The vaccine for Chicken pox is a "live" vaccine and Carter cannot receive it. This puts him at risk. Thankfully, most children are required to get the vaccine and we hope their vaccination will protect Carter.

Not a fool proof method, but the best option we currently have.

It was obvious by the precautions they were taking at the hospital that this was more serious.

Yep- that's our room with the big tape across the door. scary.

It was such a concern that the head of Infectious Disease was in our room within an hour of our arrival. ID is one of those department you pray you'll see within a week and certainly not the head of the department! I could tell by his face he was worried.  But the second we were able to grab Carter and sit him down- all the concern drained out of Dr.C's face. He sort-of laughed and said "well, I can tell you what it's not- NOT chicken pox". His demeanor then turned to more of a "I don't even know why you people are here".  It was obvious by Carter's activity, it wasn't bothering him. He said we'll probably never know what it was and could get worse before it gets better.  He said it would be gone in couple of days and discharged us.  He was gone as fast as he arrived.  Sean and I just kind-of looked at each other. Weird.  But we gathered our things and waited for walking papers. Carter was still without clothes, so he decided to make the most of his climbing ability ~

I love how it was all fun until Sean realized I was taking a picture, then he had to be a good dad and tell Carter to get down. Yeah- look at the look on his face... excellent parenting Sean, you tell him!

and... yes- those are Elmo house slippers.

He got them for Christmas last year, and found them in his closet the other day.

So we went home.

Two days later... the mystery rash was gone.

Not that Carter even ever noticed it ~

I promise that Mickey was not injured in the making of this video!

and obviously, Carter loves it!

talk about a perfect day...

I never really got labor day. I knew we didn't go to school, didn't go to work, but what is Labor Day really all about?

My interpretation goes something like this... started school 2 weeks ago, completely exhausted from all the schedule changes and trying to be everything to everyone, praying for a day to rest, need to catch-up on a long list of things.... hello Labor day!

I'm sure the official meaning has a little more polish and shine on it, but I will take it!

Many of you know that we have literally been battling the heat for over 3 months now. Yes, Texas is always hot, but this summer has been different. We haven't seen any notable rain in 3 months.

Our ground has cracks in it the size of... well, Texas!!

The trees, grass, kiddos, shrubs, plants, you name it have been miserable.

But today... the high was in the 70's!!!!

The most beautiful blue sky you can imagine.

We quickly threw open all the windows and took in the breeze.

Which brings me to Carter ~

Carter got a new Elmo kite for his birthday (july) and he is constantly asking to go outside and play with it.

Everyday, I have to explain to him that there is no wind and it's just too hot.

So today after we went out to play in the 70 degrees, he disappeared to go and find his kite.

No excuses today!

We grabbed up and went out to the area behind our house to find the wind whipping around just waiting for a kite!

Carter thought this was SO COOL!

all about the monogram baby!

{ my beautiful boy enjoying a beautiful day }

 And it was all fun and games until Sean got a little

over confident that Carter could hold the kite himself ~

watch Carter's hand right at the beginning

(and please excuse the girl-like screaming and running by my husband)

It was great day

Happy Labor Day to everyone !