Rockstar Update

We have been so focused on the present, our energies have shifted from health advocacy and feelings of desperation to complete liberation that I forgot to give an update on our second trip to Mayo. Although, if you talk to me in person, you have heard the story a million times. If that's the case, this is where you can stop reading.

So. Post Mayo. Hmmm. Yea, a staph infection. A severe one.

The test?

No, it wasn't the 4 biopsies or the upper GI scope or the HIV test or the cystic fibrosis test or the stool tests or the ___ fill in the blank for 200+ different tests. No. It was none of those. A q-tip. Yes. A q-tip. Like the one the Dr. sticks down your throat to test for strep. Yea. That. The tiny swipe of a q-tip on his cheek. Positive for antibiotic resistant staph. Treated with a strong antibiotic and mostly improved in 4 days, 100% improved in 2 weeks. Within a few days of starting the antibiotics, his language started to quickly develop. Over the course of a few days, the fog lifted from his eyes and he started adding words to his vocabulary three at a time. We saw more smiles, less agitation, better sleep at night, a better appetite & fewer meltdowns. He had obviously been in distress prior to the treatment.

I went through a moment of grief...of loss...over what could have been...well, you know.

Instead I am incredibly grateful that we have been graced.

We slowly introduced foods back into his diet and he is now consuming all foods except egg whites & any food containing egg whites and dairy and any food containing dairy products. Mostly we are trying to keep his diet clean to boost his immune system. We all had colds last week and rockstar bounced quickly without any asthma episodes.

The only thing that we found that triggers eczema flares is illness, which is expected, given his immune testing was elevated.

We have something like a 12 step protocol with at least a dozen different topical prescriptions & medications of different strengths that we use depending on severity. Instead of using the strongest steroid every day or every other day, we are using mostly nothing, sometimes a weak steroid and occasionally a strong steroid. By using the steroids, we prevent the need for antibiotics again.

Thank you ALL for your amazing support, especially to my friend Katie who supplied gallons and gallons of generous liquid gold for rockstar. Dermatology, Allergy & GI @ Mayo were all fully supportive of our generous donation and reminded us how lucky we were to have such a priceless gift to nourish our son. Thank you Katie!! xoxo

Vroom Vroom!

If you haven't heard (then you are probably living on another planet)...we are going to take a sabbatical and travel the country! Now before you go using the word "crazy"...hold on. Did you know, for the cost of a brand new, middle of the line SUV ($32,500), you can travel to 100 different countries? For Real. It has been done!

Now we are not planning to travel to 100 different countries and we are not independently wealthy, we are simply a bit overstimulated and in need of an extreme adventure...

You can check out photos of our rig here (and our new travel blog)...

http://livingabsolute.wordpress.com/

Hope to see you over at the travel blog...

This Ocean...

"According to NCAR's simulation, the oil could reach Florida's Atlantic coast within weeks. From there it could move as far north as Cape Hatteras, North Carolina."

This is Cape Hatteras...this is bliss...

Can a person feel more helpless?

Oh yes, yes they can...

SEE this? The beautiful white sand in Orange Beach, Alabama?

Today it is covered in oil.

And to think that we were careful to leave only footprints...

TED

The total elimination diet (allergy elimination diet) has created a ridiculously picky eater. Thankfully I have the vitamix and have plans to trick that picky little booger (I say that in the most loving, jokingly way). :)

An update from Friday's trip to Mayo soon...

Blisters

We are fighting another virus here. Those stubborn blisters on rockstars hands/feet and around his mouth had me stumped...but that's because they are most likely hand foot mouth syndrome and not part of his eczema (whew). I think we are over the fevers just in time to travel tomorrow!

Seriously considering a move to a less populated area or at least spending less time at the pharmacy with all the sickos. The Walgreens drive through pharmacy is looking pretty good.

Surfer boy is feeling better today. I will probably find him playing in his "fort"...

Squawk

We have the constant teething whine going on here. It's like a human version of a crow squawking. He's sleeping more, drinking more, eating chia pudding and other things that are easy on the gums. Lots of cuddling. His head still has areas that are oozing. Waiting for a call back from Dermatology.

Surfer boy is drinking a mango/banana/spinach smoothie and resting with a sore throat. I just finished making a batch of almond milk and poured some over a bowl of yummy muesli...impatiently waiting for it to soak so I can devour it.

Now I will share with you, some images, from...you know...the DAY I took photos of my own kids...

Counting Down...

Things are still looking good. We are wondering about the effectiveness of the antibiotic and whether or not it could have stopped working??? The rash on rockstar's face is acting really stubborn again and his head has spots that are oozing once again...although not as severe, so who knows. I am making a phone call to derm on Monday.

We are doing the wet dressing countdown...only 8 dressings/4 days left! YEA!!

On Friday I wrapped him, put his warm clothes over the top and we headed over to a friends house. It worked well to keep rockstar distracted and it kept me from watching the clock countdown (the weather was warm too, bonus). We are learning to be creative. ;)

Surfer boy is up to his usual bug hunting adventures...