The Scanner

This is the scanner we use to scan in Gabe's school things.  It is a GiiNii.  I don't know the model but you can get one that looks like it off ebay for about $60-$80.  Looks like new they are closer to $90-$100.

SD card holds the images.

The only downside of ours is that is does not suck through a photograph.  Aaron said there is a way around that problem but I was only 1/2 listening!  :-)

Mayo Clinic Check-Up SuperStar!

We went to Rochester Friday the 14th of September for a check-up with Andrew's Hematologist and Nephrologist at the Mayo Clinic.  When he had his nosebleeds a few weeks ago I thought I better set up appointments.  It is so hard to put into words all the thoughts/feelings/emotions that happen when we go there.  But I'll try.

The main thing that makes it so hard to reconcile feelings with facts is that Andrew is normal.  He is healthy, active, right on track for his age, happy.  Except he hides this secret in his blood.  He's normal but he's not.  I look at kids in the Heme/Onc area and think "we don't belong here"... but then in the next breath it is so glaringly obvious that we do.  He only has 12,000 platelets per microliter of blood.  12,000!  In a "healthy" individual this platelet count is a fast ticket to a transfusion....  doctors freaking out, bleeding out, etc...

And then we go to his appointments and he just rocks them!  I try not to use the word proud... because I believe pride is not a good trait, but I was flat out PROUD of my boy!  He fussed a little when they weighed him and cried when they stuck him for blood.  Charmed the pants off the nephrologist to the point that he really didn't have anything to say except "see you next year"!

He did great with the hematologist and a medical resident that was rotating through the hematology clinic.  He got a little mad when they looked up his nose.... but it was nothing that Dad's i-phone couldn't fix!  Yay distractions!

The hematology appointment was a little harder on mom and dad.  The doctor seemed a little put-out that we didn't take Andrew to the ER when he was having nosebleeds.  We tried to explain to her where we live (rural) and what we knew our boy DIDN'T need (nasal packing) and that we KNEW that's what they would do to him.  So we didn't take him.  It was as if all she could think of was where she lived and practiced medicine.... duh, it's the best in the world!  Of course we would take him to the ER if we lived in Rochester.  He wouldn't get inflatable packing or nasal tampons in Rochester because they would understand him.... or at least be able to make contact with his doctor for direction.  Ugh.  We finally agreed that what Andrew needed was a plan in place for nosebleeds and Dr. Khan would contact Dr. Suriar (local doc).  Well she did and you know what the plan is?  inflatable packing.  AAAARRRGGGHHH!  

So we have decided to try to take matters into our own hands based on Aaron's experience with nosebleeds as a youngster.  We are going to see an ENT physician in Fort Dodge early in October.  This is in the hopes that he will understand and help us put a plan in place for nosebleeds that does NOT involve packing.  Rather a plan for some topical thrombin or maybe a dissolvable packing (like Mayo has).  We'll keep you posted on how that appointment goes.

My overall feeling is that it is so hard to be an advocate for our son when pretty much no-one except Aaron understands this condition.  I feel like we need to argue with, defend ourselves, and educate the medical professionals all in a few breaths....  All the while knowing our boy is normal, but not.  He is medically fragile, but not.  He can do everything, but he shouldn't.  He can fall down, but what if?

Soo at the end of the day Andrew had a hearing screening since hearing loss can be a part of Epstein's Syndrome.  They were running about an hour behind... but he was so good to wait!  These pictures are in the waiting area.

What a sweet boy to be that happy after a long day of appointments.  And boy was this one worth the wait.  They were SO good to Andrew!  He had fun and we found out his hearing is great!  They play this cute game where they put a plastic frog on the end of a plastic shovel and when Andrew hears the "beep" he smacks the shovel and sends the frog flying.  So great!  He was happy and so were we.

After all of this was over we went home and picked up Gabe at Hudsen's house where he had a GREAT time.  We so appreciate them taking care of Gabe while we took care of Andrew.!

Andrew will likely go back to Rochester in November with Aaron for another check-up with the hematologist and possibly ENT for discussion of the nosebleed plan.

As always we will keep you posted on our little man!

Photo Ops

Andrew decided 2 hats was better than one.

Ready to strike!  Sword fighting....

Gabe's schoolwork

Aaron got a handy little scanner that we have sitting on the kitchen counter.  We can then scan in all of Gabe's papers that come home from school and then chuck the hard-copy in the garbage and have a digital copy forever!  Enjoy the work of our smart little man.

Gabe demonstrated such patience coloring this at home.  It took him about 3 days of work to get it done.

I think this is Andrew's.. not too sure where this one came from!

I find this stuff to be about the cutest, most precious thing ever!  Love our smart little kindergartener!

NoDak time!

The boys and I traveled to ND for my cousin Erika's wedding.  It was a quick trip and lots of fun!

Andrew was delighted with the tractor....

Family shot.  Missing Aaron!

Gramps and his little buddy who fell asleep during the wedding.

Erika did an amazing job decorating for the reception.  Really top notch!

Sisters!

Cousin time... Marty, Heidi, and Maria.  Well I guess Marty and Heidi aren't cousins to each other.  But whatever.

Love my Gabey Baby!

..and my Drewey Mooey!

... and my Sydney.... ummm... Bear?!?

Gramps and his buddy/shadow.

more Gramps and his shadow/buddy.

Sweet Macklin sharing his snack with Gabe.  Macklin was the ring-bearer and the son of one of my high school classmates, Mike Kelly, who is the brother of the groom!

Auntie Linda and Uncle Dan, my godfather.  Parent's of the bride.

Exhausted on our way home.  He is holding his change from the 5 bucks Grandma Di Ann gave him to spend.

Giant moth on the grent's back door.

Special Bracelets for Special Boys!

Aaron and Andrew each got new medical ID bracelets.  Andrew thinks they are pretty special!  Gabe of course wanted one so we got him a different kind of ID bracelet called "RoadID".  They are very cool, check them out here!  I think if we get Andrew a new one we will get the RoadID like Gabe's.  You can engrave more on it and for $8 a year a medical professional would have instant access on-line to his medical history.

More OKOBOJI FUN!

Here are some more pictures from our week at the lake!

We love boating... ready to go!

Gabe too!  What a nice day!

But oh was that water cold compared to the smaller lakes around Humboldt!  Here goes Gabe!

Drew jumped in and was NOT happy with the temp of the water.  As soon as he got out he curled up into this little ball!

GoOsEbUmPs!!

Chillin' at Barefoot.  Dad had to go back to Humboldt so I took the boys out to a bar.  That's how I roll.  They loved it!

A budding young fisherman.

Andrew's whopper.

Waiting for dad to get the weeds out of the motors.  Andrew was the cameraman.  We are one classy bunch.

As always, we love Okoboji and can't wait to go back soon! 

First Day of School "Special Treat"

Grandma Di Ann wanted to make Gabe a special treat after his first day of school.  The first thing that popped into my mind was this dessert from Applebees.  Gabe INHALES it whenever we order one.  It is so funny he turns into a bit of a maniac.  So Grandma did her best to recreate the delicacy.  It was a giant chocolate chip cookie warmed up with ice cream on top.  That is topped with hot fudge, smashed Oreos, and whipped cream.  He was a happy boy.  Then he said his stomach hurt.  Big surprise.