Saturday, June 30, 2012

Skin Deep

It started with an ear infection that couldnt be treated with his regular antibiotics. So we cultured it...good ole MRSA. Bactrim was prescribed to treat it, another antibiotic. One Kai hadnt taken before, but he hasnt been on many.

The days go by. The ear seems to be oozing less. Day 11 he gets a runny nose and watery eyes, its the summer here and pollen and allergens are all over the place, so I just give him so Benadryl. Then Claritin. The Nasonex...nothing seemed to clear it up. He was really restless that night, so he slept in bed with Daddy and I.

By morning he had a rash on his back and his eyes were swollen shut and felt a little warm. I thought maybe some viral thing, but sent him to the pedi to make sure. This was Day 12, but I didnt give him his medicine that morning...


Our Pedi said it was an allergic reaction to the Bactrim and to stop taking it and prescribed an antihistamine.

Six hours later we were in the ER at Texas Children's.

This was obviously a little more serious than allergic reaction, this was a little more than Skin Deep...

The first diagnosis was Serum syndrome due to the 3 different antibiotics he had been on over the past month. Then Stevens Johnson Syndrome was mentioned, but he did not have any blisters or lesions on any of his mucous membranes, so we stuck with serum syndrome but they were going to keep him overnight for observation.

That was a good call because an hour later he had blisters in his mouth. His diagnosis was now Stevens Johnson syndrome and he would be staying in the hospital for a few days, just until the swelling subsided...

The next day...


The 2nd two pictures he actually looked better than the first because the swelling had gone down.

But that night, the 'syndrome' must have kicked into high gear. He swelled back up and started having respiratory distress. His airway was swelling and he was having stridor(very hoarse, noisy breathing), and was screaming trying to climb out of the crib like his skin was on fire. An RRT(rapid response team)was called and he was quickly assessed and taken from the 15th floor to PICU...

He was taken into the OR to be nasally intubated so that they could suture the breathing tube to his septum because his skin was blistering and sloughing off at an alarming amount. The PICU is where we would spend our next 2 weeks.

Taken right after intubation from the OR

This is all I can write for now. This is a hard story to relive. Even though we are still on this journey and this was only 2-3 weeks ago, it all still feels so surreal. I keep looking at him now wondering did this nightmare really just happen to us? Did my beautiful baby boy really just endure all of this? I ask myself these things as I sit with him this afternoon making googly eyes at him and him laughing hysterically...

I will continue this story as I can, as the little man is taking up much of my day now :)

But I do want to again thank everyone for everything. I have never seen such an outpouring of love and prayer and gifts for a child, and I thank you. Kai is very special to us and apparently to a whole lot of other people. So, thank you.

Tuesday, June 26, 2012

Is Beauty only skin Deep? part 2

A lot of people would answer No.

But if I showed you these same pictures of my children,
could you still say they are beautiful?

Would you even know he has Down syndrome?

Could you say she looks just like her mommy?

Would you know Peter was adopted?

There are many reasons people may find someone beautiful or not beautiful. And a lot of people will tell you it is what is on the inside that makes you beautiful.

Ive seen people with huge smiles and lit up eyes when they see Kai

And then when he turns around or lifts his face, I see that fleeting look of 'pity' or 'that's so sad'

I think all of my children are beautiful. 
And yes, initially it is based on all of their cuteness and beautiful features.
I also know that they are beautiful on the inside too.

I just never really really thought about that until these past 2 weeks

When was the last time you thought about it? You look at their loving, smiling faces and think how cute they are and how pretty they are...and I know a lot of us DS parents absolutely know our children are beautiful on the inside. 
But has it ever crossed your mind how devastating it would be if something happened that altered their appearance that would cause people turn their heads away from them as they walk by(as if that doesnt already happen, but we are kind of over that one).

Wouldnt you feel a little sucker punched? 

I know I did...

Monday, June 25, 2012

Is Beauty only skin Deep? Part 1 of a series

Is beauty only skin deep?

Can you answer this honestly?

Ive always been told my children are beautiful

But what if one day that all changed?

What would be your first thoughts if your child's face or body were marred?

Could you honestly say, It's not going change how people treat my child?

As a parents of children with Down syndrome we have 
already crossed that bridge once.

It felt shallow the first time...

Could you do it again?

Would it be different...