January 7, 2015, Adventure Day #1

At the airport – saying goodbye to daddy… headed on a 6-hour flight to Granny’s to see if we can:

1) help Avi’s plaque psoriasis / get him better or at least stabilized &

2) focus on some Mama/Charlie time to see if an extended stay away from home (and away from the “regular routines”) is a good opportunity for him to shed some of the ODD (Oppositional Defiant Disorder) behaviors he has picked up recently.

3) See if Mama can still work while away from home and with kiddos underfoot! [With “elves” back in the office in Portland helping with the on-the-ground details needed to keep up with all the requests for support from families!]

Taking these two kids for a 6-hour flight by myself was its own challenge… especially with the commitment for this trip that they have no video game time and very limited/ supervised (and only high quality) movie time (aka  – no crap tv.)

I sat between them of course, but they still manged to hit and fight a bunch during the flight… mostly over the fact that Charlie got the window seat and Avi had to sit on the aisle.  Luckily Charlie took at 2+ hour nap mid-flight so that helped! Plus we played games, and drew. Avi created his own book of creatures – kind of like Pokeman  – I had brought him a blank book and he filled the pages with different types of creatures divided by chapters that were creature realms (ugly creatures, tiny creatures, water creatures, cute creatures, etc.)  I also (somehow in the chaos of preparing for the trip) managed to remember to download one movie onto my phone – so Avi and Charlie each had their turn watching most of Frozen!

Since this trip is largely about climate therapy for Avi (each year when his psoriasis gets really bad we try to take him away somewhere where he can have sun and saltwater exposure to help heal him or bring him to at least a less-painful state) here are some “before” pictures of Avi’s psoriasis from today (taken in the airplane, excuse the dirty fingernails – kiddos did not have a bath before heading out to the airport, plus Avi has extreme sensitivities in his nails and nail beds – so it is very difficult to cut and clean them without lots of screaming!)

These photos are of his legs and ears – but he has this all over his body… most painfully on his anus and testicles… as well as his face, arms, feet, legs and armpits.  Plaque psoriasis is not supposed to become an issue (if it becomes an issue at all) until a child hits puberty or later.  Avi has had issues since shortly after he was poisoned.  He is the only person in our immediately family with this condition (with a distant cousin being the exception) and he also was our child with the highest lead exposure.  Plaque psoriasis is a condition that takes advantage if a person has a compromised immune system.  Lead poisoning causes compromised immune system related issues.  To my knowledge no study has been done specifically linking lead poisoning and plaque psoriasis – however many of the mothers in our support group of parents with lead poisoned children have anecdotally reported that their child also has plaque psoriasis.  I think it might be worth studying.

The other issue is that all of the medication for the condition is formulated for adults.  The medications specifically warn against use by children.  They are also not “cures” and must be taken forever.  The minute they are stopped the condition returns and usually worse than it was originally.

With Avi his biggest problem areas (in terms of cracking, bleeding and related pain) are his anus, testicles and face.  The prescription topical ointments that our doctor prescribed us (and this doctor is one of the top pediatric dermatologists in the country) specifically stated in the packaging that it was not for use on face and genitals.

It has been a long path that has lead us to “climate therapy” as one of the only viable solutions for this little 9 year old boy who has been suffering with this condition for years.

We are also considering whether a permanent move to a warmer climate (and a location with lead-free schools to boot!) might be possible for him.  The results of this three week experiment will significantly influence what we do next on that front.

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After we landed (kids were so happy to get out of the plane OMG!)  – Granny met us and took us right to the beach.

There are wild chickens everywhere here  – so Charlie (age 6) immediately started chasing chickens around the beach.  Avi is a very strong swimmer (self-taught in Florida three years ago when we were traveling the country and filming my film) so he headed straight for the water (just the reaction I had hoped for!)

Charlie was like a caged animal unleashed and started happily and enthusiastically climbing the trees at the beach as well.  I think he needs to live somewhere where it is safe and acceptable for little boys to climb trees! All to often in Portland it seems like people worry about kids climbing trees.  At one point our neighbor complained about Charlie climbing her cherry trees (on the parking strip)  – she specifically said she was “concerned about liability” (WHAT KIND OF WORLD ARE WE LIVING IN FOLKS!) … My response…. remove the little iron spiked fences that you put around the bottom of your trees so kids can safely climb them – JEEZ – after-all, technically the parking strip trees ARE on public property…

At the beach the kids found an abandoned baby chick.  It was getting late (dusk) and all the mama chickens had left – so we decided to take it home!  We stopped by the “they have everything!” hardware store and picked up some baby chick food on the way up the hill to Granny’s and when we got there little “Stitch” got settled in a box with some fluffy toilet paper to nest in, a bowl of water and a bowl of feed.

With the time difference, the travel, the swimming and the chicken excitement… kiddos were wiped out by the time we got to Granny’s and (if I remember correctly – since I am writing this a few days after the fact) they went to bed right away. #ZonkedOut – which also means they woke up SUPER EARLY the next morning!