Eli and Kamrynn

When we were in Mesa a few weeks ago, we got to go to Mother Nature's Farm with Kamrynn, Eli's oldest friend.  Kamrynn's mom, Katelyn, and I became friends when the kids were about 9 months old and she's one of the people I miss the most.  And Kamrynn is one of the people Eli misses the most and he always talks about her.  I was just scrolling through some of the pictures of them together and had to put them up to show how much these 2 buddies have grown.

1 year old

2 years old

3 years old

4 years old

Kabuki Syndrome Awareness Day

Today is Kabuki Syndrome Awareness Day, although I feel like most days are Kabuki Awareness Day, as I share Izzy's story with those around us.  So here's to my beautiful little girl who's filled our lives with so much happiness.  Your so much tougher and stronger than I will ever be.  We've been blessed to meet and get to know other Kabuki families and hear their amazing stories.  Here's hoping that more information will become available to all us Kabuki families and more people will research it.  To all the Kabuki kids out there, who are the cutest bunch of kids you will ever meet.  

Schneph Farms

 Our week in Mesa didn't quite go as expected, thanks to 100+ degree weather spoiling my fall plans.  We sucked it up and took the kids to Schneph Farms anyway, despite the scorching heat.  It was fun, but the day did end with Izzy, Virginia and I trying to cool off in the 1 place with a swamp cooler on the whole farm.  Here are our pictures from the farm:

 Eli and Grandpa Robinson on the train

 Merry-Go-Round and the Cool Bus

 Petting zoo- petting the goats horn.  Right after Eli got bit by a donkey on his stomach.  Seriously.

 Eli had his first experience on a roller coaster and LOVED it!

 Eli playing with the band

 Smores to celebrate Grandma's birthday

And she's just sooo cute, lately Isabelle loves nothing more than playing with the phone and yelling "Hiya!"

Just News

What we week!  We've been bogged down with stress and worry about our insurance drama, new found debt to the hosp., trying to find a new car and a new pediatrician for Isabelle.   While I can honestly say that the last year and a half have made me very weary and disappointed in our countries insurance options and how inefficient and incompetent the government agencies we've had to deal with have been.  However, despite feeling angry towards certain institutions, I've been overwhelmed by how good people are and how many amazing and kind people there are out there.  This week I was reminded of this as I was so stressed out.  Isaac drove Isabelle to Tucson for her swallow study.  Her pediatrician here in Sierra Vista has been very disappointing and it all came to a head on Thursday when Isaac got to the hospital only to find out our doctor had written a script for the wrong test.  So the hospital called our doctor and gave him an opportunity to switch the test over the phone, but he refused to admit that he was wrong and wouldn't switch the test. At this point Isaac was thinking that maybe he was wrong, so he went ahead and had Isabelle do the test.  Halfway through her speech therapist showed up and was furious when she realized Isabelle was being given the wrong test and that her doctor hadn't switched it when he had the chance.  I was furious when Isaac told me what happened, Isabelle has sat through appointment after appointment, suffered through endless tests and for her to needlessly suffer through another test, 3 hours of driving when she hates the car, and to have every one's time wasted, made me so angry.  I was even angrier when I called the doctor office to try and understand what had happened and basically just discovered that our doctor was to arrogant to admit he was wrong and listen to us, her parents (because what do we know, right?). Anyway, I was on the phone nonstop trying to reschedule her tests (her tests and appointments usually have to be booked 3-6 months in advance, so missing one is a big deal, because we can't get in quickly.) and feeling frustrated and stressed, when I got an email from a friend in the MOMS group I've joined down here.  I've only gone a few times and haven't gotten to know anyone well, but they found out about everything going on and planned and scheduled to bring us dinners for the next 2 weeks.  We're actually only here for another week and then off to Mesa for appointments again, but I was so amazed and grateful for this group of ladies who I don't even know very well, going out of their way to do something kind for me and my family.  Then I went to the mailbox and got a card from a college roommate reminding me again how much goodness and kindness there is out there.  Also, we also found a new doctor for Isabelle who I interviewed and am very hopeful will be a good doctor and a good listener and found a new car to replace our lost truck, an 11 year old minivan that sports a VHS player!  Eli calls it "the cool car."

Eli, getting ready for a ride in the cool car.

This little dress is an old dress of mine that my mom saved.  Isaac calls it my Little House on the Prairie dress.

The Never Ending Hike From Hell

We went on an insane hike on Sat.  Insanely bad.  We decided to take the kids into Ramsey Canyon and check it out and it really was great at first.  Really.  We saw 2 deer right off and even Eli's screams of excitement didn't scare them away.  There was a little area for Eli to play in the water.  It was flat and an easy path and we were having fun.  Then it got to the point where you turn back or hike the next 1/2 mile uphill, about an 800 foot elevation change (illustrating how steep it was here) to get to the Ramsey Canyon Viewpoint.  With Isaac toting Isabelle and me helping my 4 year old along, I wasn't too excited about this plan.  Several times along that 1/2 mile, I questioned whether this was a good idea.  Eli continued voicing his protests - "No more walking please," and more to the point, "Stop, stop!"  But Isaac really wanted to see this viewpoint and every time a complaint was made, he pointed out how far we'd come, that it would be a shame to turn back now, and we were almost there, right?  Somewhere along the way, as the sweat poured down, I let him know that this viewpoint was only going to be worth it if there was a beautiful, snow-capped mountain waiting for me at the top.  Hey, I'm an Oregonian, I've got high expectations for viewpoints!

Anyway, we finally got to the top, sweating and puffing, only to have an Arizona Monsoon come sweeping in at that very moment and insane amounts of rain (if you haven't been caught under a monsoon, they happen quickly and you are drenched within the first second, that's how strong they are) pouring down.  We went running (or as close as you can to running down an extremely steep and now muddy, slope) back down, with Eli howling all the way (and the word howling is an understatement - people at the bottom of the trail actually heard us the entire way down).  Eli is sobbing, screaming and also yelling at me to sing songs to make him feel better, so I'm singing primary songs at the top of my lungs, trying to cheer him up.  Then the hail started and all my singing couldn't control the devastation.  And worse, nothing we could do to make it at all better, other than keep on hiking. I was feeling like I'm going to win the worse-parent-of-the-year award the whole way down.  Eli is shaking he's so cold.  Isabelle, who is definitely the toughest member of this family, is smiling and laughing the whole way down, while the rain and hail poured off her.  We finally got to the bottom, ran to the car, stripped the kids soaking wet clothes off and turned up the heat.  I thought we had it pretty bad, until we turned out of the parking lot and saw the huge outdoor wedding going on at the B&B next door, and the soaked crowd and bride and groom.  I am certain that they were married to the accompanying sounds of Eli's screams (since we do know they echoed down the canyon).  Sorry folks!  Here are some pictures of the disastrous hike, before the disaster.

 Tough guy wanted to carry the backpack himself.

 Look at how strong she's getting!  Supporting herself these days, getting closer to walking everyday!

 At the top of Ramsey Peak - about a minute before it started to rain, pour, and hail.

 Leaving, totally soaked!

and just because she's so stinking cute!