State Fair and First Day of School

We took the boys to the state fair last week.  They loved it!  There favorite part was playing on the tractors and eating chocolate chip cookies!!  The boys also started preschool this week.  They are attending Ames Community Preschool Center which is located in downtown Ames.  This will be less of a commute for mom to get them to daycare and to work, which after 2 1/2 years of making the daily trek is a welcome change.  It was still really hard for mom to start them someplace new, but them seemed to enjoy it.

Waiting for the pony ride

 Playing on the tractors

The boys

 Sticky mess

Enjoying a Popsicle

 Crashed after a long day at the fair

Train ride!

Ethan-1st day of preschool

 Aidan-1st day of preschool

Off we go....

We were also in IA City with Ethan for a recheck on his eyes.  The doctor feels the glasses are really helping to straighten out the crossing of Ethan's eyes, but he still tucks his chin down  and looks out the top of his glasses rather than use the bifocal.  Most people with nystagmus (eyes bouncing) have a "null point" or a point at which they can "quiet" the bouncing and get a clearer picture.  Ethan's null point is high up in his vision which is why he tucks his chin.  Dr. Drack tells us there is surgery they can do to move the null point down in his vision, but she doesn't want to do the surgery too soon because the null point can move on it's own as he grows.  We go back to see her in 6 months for a recheck.  Meanwhile, she said not to correct Ethan or direct him on how he should look at things.  She said he is compensating to get the best picture possible and we should just let him do his thing.  That sounds easy to us!  The best part of all of this is that Ethan has always left his glasses on and never once fussed about having to wear glasses...that to us is a blessing!

Adam and I had our 5 year wedding anniversary this past weekend.  We both marvel at how our lives have changed in the past 5 years. What ever did we do with all our time and money!?!?!?

Hope everyone is enjoying the last few days of summer.  We are off to Chicago in 2 weeks to help Connor celebrate turning 4!

What have we been up to?

Swimming in our pool

 Playing on a firetruck

Helping Lily celebrate her birthday

Being silly

Goofing around

Going to our 1st movie...Shrek 4

Playing outside

With our new trucks

Hope you are having an adventurous summer too!
 

Sweet Corn

July in Iowa = Sweet Corn

My new hat...

Everyone has many different "hats" that they can wear.  For example, I have my "Mom" hat, my "Wife" hat, my "nurse" hat, "chef" hat, "housekeeper" hat...the list could go on and on.  But today, I added a new "hat" to my closet.

For a while now, Adam has been telling me that I could cut his hair and the boys' hair.  I have basically ignored him everytime he has brought this up.  So, today we were shopping at Sam's Club, when Adam came across this clipper set.

 Adam assured me the box looked like cutting someone's hair was "fool proof" and he talked me into buying it.  So, of course, it was expected that I would give everyone hair cuts this afternoon.  The kit came with very nice, specific instructions.  After reading over the instructions, away we went.  All the boys (Adam included) sat very nicely (of course I bribed them with money) and everyone got their hair cut.  Much to my surprise, no one is missing a large section of hair or an ear.  I was actually quite impressed with the job this little clipper could accomplish.

 So, my newest hat, "hair trimmer".  The questions is, what will I do with all the money we will now save on haircuts?  Hmm......

Happy Memorial Day

 

 Happy Memorial Day to everyone.  Hope you are enjoying a nice, long, relaxing weekend!

 We received test results back from IA City on Friday.  Ethan tested positive for Oculocutaneous Albinism type I.  So, what does that mean?  This confirms the diagnosis that Dr. Drack has been suspecting is the cause of his eye problems.  Of course no one wants to be told that their child has a "condition", but at the same time, we are very happy that we finally have an explanation for why his eyes are the way they are.

Albinism is an autosomal recessive disorder.  This means that both Adam and I carry a recessive gene for albinism.  Every child we have has a 1 in 4 chance of having albinism.  Our siblings have a 50% chance of carrying the gene.  One of each of our parents carries this gene as well (that's how it got passed on to us).  We go back to IA City in August for another check up with Dr. Drack. She will talk with us in more detail about albinism at that appointment.  Adam and I will also have our blood drawn to confirm that we are both carriers of the gene.

In the meantime, we've done some of our own research on albinism through Mayo Clinic and NOAH (National Organization for Albinism and Hypo-pigmentation).  Here's a few facts about albinism:

-1 in 17,000 people in the US have some form of albinism

-People with albinism always have problems with vision.  The degree of impairment varies from minor impairment to legally blind.  Most are able to use their vision for common tasks including driving and reading and do not need to use braille.

-People with albinism may lack all pigment in their skin and hair while others have almost normal pigment.  People with albinism are at a higher risk of developing skin cancers (bring on the SPF 80!)

-People with albinism live normal life spans and have the same types of general medical problems as the rest of the population.  Albinos have a normal intellect.

Adam and I had very little knowledge about albinism before all of this (as I'm sure it true with the general population), and we are still in a learning phase.  I think for most people, the word albino carries a negative or demeaning connotation out of lack of understanding of the condition.  I'm sure there will be days in our future where Ethan is teased by some for his condition. I'm just very thankful he has a tough little brother who can stick up for him!

We will keep you updated as we gain more information on this.  In the meantime, we are enjoying our summer!

Crazy Life

I LOVE the new picture I put on our header...it is such a real glimpse of our life.  I also love the quote at the sidebar..."it may be a crazy life, but it's our life"  Some days I try and remember our life, before the crazy days, and honestly, I really can't.  I think that's God's way of protecting you, so you don't totally lose it when you really, really, realize what chaos you live in.  This is what we've been doing the month of May.

  

Aidan and Frank

Ethan and Chuck

Cousins:Ethan, Aidan, Kayla, Connor

 The Rash Family (Connor looks like he's the only one who's really ready for the picture!)

We had another visit to IA City last week with Ethan.  Dr. Drack said the glasses have greatly straightened out Ethan's distance vision, but he is still crossing quite a bit with up close stuff.  So, he is getting bifocals.....he's the only 2 year old I've ever heard of with bifocals!  So, hopefully that helps. He also had his blood drawn again to test for a different type of albinism (OCA type 1).  This one gets sent to Baylor in Texas and again will be 4-6 weeks before we get results.  Dr. Drack said if this one comes back negative (like the last one) then we'll probably wait and retest again in 5 years.  She is still thinking the optic nerve hypoplasia is linked to a form of albinism.  She said whether his optic nerve is 1/2 the size it should be, or a 1/3 of the size it should be is hard to determine at this point.  As he gets older and they can do more extensive tests on his eyes, then we will know more.  We are very thankful that he likes wearing his glasses and has adjusted to them so easily.  We hope the bifocal is as easy of a transition for him.  We will make the trek to IA City again in August for another recheck.

Both boys also had their first dentist visit this month.  Dr. Debbie was wonderful with them and said they both have very beautiful, healthy teeth.  They talk about Dr. Debbie every night when they brush their teeth and have even been playing dentist with each other! 

Finally, we had a family wedding last weekend in Dubuque.  We stayed at the Grand Harbor Hotel and Waterpark.  The boys thought the waterpark was very cool.  Aidan was getting very brave by the end and would want to jump in and not have anyone catch him, and then swim over to the steps and do it all over again.  They are getting so big!

Easter and More!