Good night.  Things have been busy around here.  Not in a super exciting, we’re solving world problems over here…just in a living life, school is happening, taking care of the boys type of busy.  It’s amazing how Asher being in school for 2.5 hours a day can make life a little busier.  It’s completely worth it though, he’s so happy to be going to school.  He loves responsibility, and learning, and having something that’s just his.  And, Beck and I get some special times together as well…mostly in the car either dropping Asher off, or picking him up…but Beck likes having something that’s just his too :).

I can’t believe it.  Asher lost his second tooth.  Here’s his new smile.  He has this little lisp going on that is too cute.

Waiting to pickup brother…

Everything below is a total memory/photo dump in a desperate attempt to get caught up on the blog…

Jeremy and Asher went camping with their cousins, Justin and Christian to Harding Point up by the Rim.  The boys had a great time breaking sticks, turning over rocks, and just being outside and out of the heat for a few days.  Jeremy said that Asher woke up early the next morning and said, ” Daddy, can I go and explore?”  What more could a boy ask for?!

So many fun memories with Auntie Lori I can’t keep up!  Water park day, special movie date with Asher, babysitting so Daddy and Mommy could have a date…we all are SO thankful for Auntie Lori!!!

Four dollar fun…

We love them so much.

We made it through another round of the yearly tests for the boys.  Blood work, chest xrays, shots, doctor appointments…I’m tired, and all I do is drive them and comfort them…they are truly warriors.  We have appointments with their Pulmonologists and GI next month, but there was nothing that was cause for immediate concern in reviewing the boys results.  We’re stoked and beyond thankful!

Jeremy organized a family camp-out with about 20 families from our church.  It was so wonderful to have a campground to ourselves, and let the kids run free!  Can’t wait to do it next year!!

We also got to have some special fishin’ times with our friends the Osbornes…

Sweet memories at home…

Sweet memories not at home…

On Thursday’s, I pick Asher up from school and bring him back to work with me for a couple of hours.  He sits in Daddy’s office and watches his shows on PBS.  It’s so adorable listening to him giggle in there.  He loves getting to sit at Daddy’s desk, unwind after a hard day of learning, and do something special with Mommy.

More special times.  Asher has a trundle bed under his bed, and he invited me to have a sleep over.  We had so much fun staying up until 10:30p playing checkers.  Also, we’ve been skating a couple of times now, and he loves it!

These pics pretty much describe life with our boys.  Wild, crazy, intense, sweaty love :).

Is it really possible.  He’s in Kindergarten?!  It’s so hard to believe.

We’ve been praying about whether to put Asher into Kindergarten pretty much since we found out he has Cystic Fibrosis.  It’s a big deal…and the deal got even bigger once Punkie Bear joined our family.  We pray for God’s protection over Asher, because he is so over the moon excited about school and completely in love with learning and being around people.

We are beyond blessed to have Mrs. Brown for Asher’s Kindergarten teacher.  She is so loving and so kind to Asher…and completely full of patience as he learns to temper every exciting thought that comes to his mind that must be shared right away for everyone’s enjoyment :).  Asher went from 20 interruptions, to five interruptions the next day, to one interruption the day after, to zero interruptions.  We are ecstatic with your progress, Asher!  You’re working so hard to raise your hand and wait your turn!

We’ve had several meetings and emails and phone conversations with the staff at the school to talk about Cystic Fibrosis, and ways they can help Asher to thrive in a school environment.  Jeremy and I spent a lot of time preparing Asher’s 504 plan, and talking through all of our concerns with germs, bathroom accessibility, and enzymes, as well as wanting to protect him from standing out too much with his peers.  They have been so wonderful to help in every way they can, and made accommodations we didn’t even consider.  It’s only 2.5 hours a day, but it’s a big deal.

Here’s to being an Eagle now!

Waiting to walk through the doors on his first day!  He looks so contemplative here…”Well, this is it world.  We’re starting a new era.  I bet it’s going to be pretty awesome…”

When it was his time to go, I got down on my knees to tell him how proud I was of him and how much I love him.  He said, “I know, I know, I know, you’ve told me that like a hundred million times!”  Then, he literally ran down the long hall to his classroom!  We’re two weeks in, and the excitement is still going strong.  Hopefully this will last about 12 more years, ha!

Our beautiful boy.  We cannot believe you’re so big, and going to school now!

Just a couple of cute stories to date that I don’t want to forget:  I spoke with Mrs. Brown the other day and she said that you are such a character and make her smile all the time, and that you have so much confidence.  She said the other day when it was another child’s special day (you were supposed to draw a picture of her and tell her something nice about herself) you went up to her in front of the class to present your picture and said, “I didn’t really know what to draw, so I drew a smiling cactus.”  Oh my gosh!  Ha!

Also, when I was driving you to school on the Friday of your first week I told you that you would not be going to school the next two days.  You shouted out, “WHAT?!”  Clearly Daddy and I have done a poor job of explaining what a weekend is, ha!

We did lots of things to celebrate your first day of school, Asher Smasher Basher.  You got a haircut and some new kicks, we went to Peter Piper Pizza and you played arcade games until your heart was content, we had balloons, we went out for breakfast in our jammies per your request…but the most special part of it all was that Grandma Necas got to be here to celebrate with you!

Thankfully my mom was there to take a few pics of Asher and me.  I was anticipating a quick pose, but it was like Asher knew I needed more :).

We love you, Asher!  You’re going to rock this school thing!

It’s amazing having a lake home to vacation to in the Summer, and even more amazing that we have years of memories and traditions to share with our boys at The Lake.  We had perfect weather while we were there, and it was doubly awesome to get out of the gross heat here for a week and let the boys run free.  Thanks, Dad and Mom, we had a wonderful time!

The pontoon is the main attraction.  Strolling around the lake looking at all the homes, fishing, tubing…it’s the place to be, and it’s pretty peaceful.

On the fishing note.  It’s outstanding to Jeremy and I how much Asher loves fishing.  Grandpa and Grandma took Asher out fishing for two hours one day, and they were the ones who wanted to go back home, not Asher, ha!  Another time, we were all outside having our own fun and Asher found his fishing pole, grabbed his own worm, put it on his hook, cast his line out from the dock and CAUGHT his own fish!  It was an exciting time around the lake :).

The go-kart.  Asher was old enough this year to try driving the go-kart by himself.  He totally loved it!  Grandpa and Grandma’s friends live on a farm with lots of different trails that Asher could drive on around the house and through the fields.  He felt pretty cool to be driving!

Little sidebar, but I have to make mention of it so we remember when Beck got his first big owie.  Sweet baby Punkers has quite the gash on his forehead.  Daddy took him and Asher out to see the crane that was at church one day, and Beck tripped and fell on the cement.  We took him to urgent care, but apparently the glue stitches are no good or we had an awful glue stitchery doctor, because it’s still pretty wide and definitely going to leave a scar.  He’s a tough little guy…and now he looks the part too.  Sweet boy…

The Sling Shot.  Could Grandpa and Grandma have picked a more perfect toy?  Isn’t catapulting rocks into a lake every boys dream!!  AND in your undies!  He was so happy :).

There was a beat boxin’ competition…and an awesome photo shoot :).

Tubing.  We all had fun tubing, but of course Asher was in love.  We had such a great time watching him tubing by himself for the first time, but the absolute best memory was Asher introducing us all to his hand signals.  Thumbs up for “go faster”.  Thumbs down for “go slower”.  And, when he tapped his head with his hand that meant “Could you stop and shut off the motor because I either want to take a break, or I have to tell you about my hand signals again because clearly you forgot since you didn’t follow my previous hand signal”.  Lol.  We were crying we were laughing so hard.

Hand signals, so we remember for next year.

Beck just hanging out with Daddy, holding his hand, chomping on some turkey, being cute.

Punks got his first lake bath, and it was pretty sweet!

Failed attempt at getting two kids to smile at the same time, but cute memories none the less :).

Another trip for the books!

You’re reading now, Asher!  We went to the library and picked out some books, and when we got home you started tearing up the pages.  We’re so excited for you, and super proud!

You’re building towers now, Beck!  You’re learning and growing every day, and it’s such a joy to be your cheerleaders :).

And, this video just cracks us up…

Well, it’s confirmed.  We all love the beach, therefore we need to live on the beach…maybe one day :).  

It was so fun watching Beck experience the beach for the first time.  Based on his reaction to the pool we were pretty sure he would love the ocean, but had no idea he was going to be insanely in love with it.  Maybe it’s normal for 1 year olds to not be afraid of the rushing tide, but Asher certainly did not feel this way, and so we expected a little hesitation from Beck…there was none :).

Asher has been in the ocean before, but typically he’s a sand castle building machine, and has been a little timid of all the ocean has to offer.  On this trip though, he was IN the ocean.  Jeremy, Uncle Lance, Grandpa Olimb and me were out a ways jumping some serious waves, and Asher was not too far back with Auntie Dana holding her hand and enjoying the ride.  We were proud of you, Asher, for experiencing something new!  I wish I would have gotten pictures of you!  But this is the joy you had in the deep blue ocean…

Love.

Special times with Daddy.

Memories with the fam.

And, on the list of “Most Fun Things We Did in Florida” was definitely our day at Disney World!  Jeremy and I were able to spend the day with just Asher flying around to all the rides in Magic Kingdom.  We were once again amazed at the wonderful blessing the medical pass was to our family.  We were able to ride most everything and cover the park in about six hours.  It was so calming to be able to walk past lines of people and germs, and get our boy out of the heat and on the rides as quickly as possible.  That medical pass allows us to give our boys Disney memories, and we’re so grateful.

We hadn’t told Asher where we were going that morning, we just told him that he got to have a date day with Daddy and Mommy.  We were driving up to the park and Jeremy read the sign, “Disney World, where dreams come true.”  Asher squealed in the most excited voice, “WHERE DREAMS COME TRUE?!?!”  It was the sweetest moment we’ll never forget.

We’ll also never forget experiencing a classic Florida moment of complete torrential rains for about 15 minutes.  It was awesome.  And, wearing ponchos around Disney made the day even more magical!

They love playing in this house together.  In and out, open and close, doorbell, repeat.

A little someone watches your every move, Asher.  He loves you so much.

Someone wants to spend every waking moment with you, Beck.  He loves you so much.

Punkie got his first haircut from Ms. Priscilla.  He was NOT a fan, ha!  He was either quite pleased with the wispy mop he had going on, or the cape made it so he couldn’t have his two fingers in his mouth…this was it.  We all giggled the entire 2.5 minutes it took to cut his hair.  It was so cute and ridiculous!

This video pretty much sums up our boy.  It’s perfect :).

It’s a big deal.

Random, but special cell phone memories.

Hope Kids blessed us again with another fun memory for the books.  Asher and I got to have a little date together thanks to Auntie Lori watching sweet Punks.  We started our road trip out with a stop at our favorite, Einstein Bagels, and headed up to the mountains to enjoy some time on a real live Ranch.  Despite Asher’s warnings that he was not going to ride those, “boring, dubious ponies” (thanks for that Martha Speaks, ha!) he couldn’t get enough of riding his pony, Spirit.

Everyone there was so nice to volunteer their time, and host an event that made many children smile…especially the boys.  Asher loved shooting a bow and arrow, a pellet gun, eating hot dogs, taking a hay ride, shooting nerf guns at bells, riding a bull, dressing up like a bank robber, and he really loved trying to lasso a bull.  Might I add, the boy has skills.

All of a sudden out of nowhere one day Asher wanted to setup a lemonade stand in our driveway.  I don’t know where it came from, because I certainly didn’t encourage it.  It was hot out, and 3:30p – like the worst combo for a lemonade stand…or being a mom of the lemonade stand owner :).  I helped him make the lemonade, and talked a lot about testing out your market, and tried to prepare the overly excited 5 year old boy who wanted to sell some lemonade that he might not get any customers and that was ok.  He made his own sign.  It just had the yellow square on it with the price.  He said, “People can just look at this, and boom, they’ll know it’s lemonade.”  I begged him to write the word lemonade on it.  He didn’t need it though.  This sweet man would have stopped anyways.  I got teary when I saw him walking down the street.  I couldn’t stop thanking him for taking the time to stop and encourage my boy.  Asher’s first lemonade stand with a grand total of $2 – one from sweet old man, and one from daddy who thank the Lord came home early that hot day.

Fun times at the Railroad Park, and the Children’s Museum where Asher could literally live in the grocery store section checking people out and restocking shelves, and Beck continues to be the best traveling buddy around.

He may only be 14 months, but he’s already in training for beeshing the bad guys :).

A few weeks ago Beck was sick for 10 days.  He was really sick….moaning while he was sleeping sick.  We went through antibiotics, steroids, doctor visits, and 30 treatments about 40 minutes each for those 10 days.  It was grueling for all of us…and worrisome.  Our lives, and the things that we spend time on look way different then most people’s lives…and it’s never ending, and very unforgiving.  We plan our days around morning and evening treatments, but as a whole we’re pretty much in a routine with the boys.  Most days we don’t even think about what needs to be done, it’s just what we do.  But, everything changes when either of them get sick.  On top of the extra doctors appointments, meds, treatments, cleaning equipment, diaper rashes for Beck…there’s this worry.  Are they going to have to be admitted?  Will they recover quickly from this?  Is this causing lung damage?  What will their culture results be?  Is this Pseudomonas again?  It’s quite an emotional battle, because all of these things are possible.  I’m so thankful to know that God is in control of all these things, and He loves Asher and Beck even more than we do.

Asher needed to have some allergy testing done because he’s been having trouble breathing through his nose for quite awhile.  We wanted to figure out how we could help him, and whether or not he was struggling with sinus issues (super common in the cf community) or if he has allergies.  This whole experience was honestly quite awful.  The first jab that the nurse gave him shot him straight up off the table and asking if they were all going to feel like that.  He had 50 to go through, and after 20 he was beside himself, and a literal mess.  I’m thinking he’ll never forget this experience, and it was by far one of the worst experiences I’ve had to watch him go through.  He Voxed Jeremy after it was all over and said, “Daddy, they really hurted me.”

I wish that he wouldn’t have had to gone through this, but we did find out that he’s allergic to Ash, European Olive, and Privet trees.  We’re thankful that it’s seasonal, and hopeful to be able to provide him with some relief now.  We haven’t seen a ton of improvement with the meds and nasal spray so we’ll probably continue to tweak them, but at least we know part of the problem now.

One of my cf mommy friends was putting together an exhibit at her cf walk of 65 rose tiles painted by adults and children with Cystic Fibrosis.  It was bittersweet watching Asher work so hard on drawing and painting his rose.

I feel like I can relate so much with this momma and the story behind 65 Roses.  It’s a sweet one, and I thought I would share it here…

“65 Roses” is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.  Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research.  Mary’s 4-year-old son, Richard, listened closely to his mother as she made each call.  After several calls, Richard came into the room and told his Mom, “I know what you are working for.” Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis.  With some trepidation, Mary asked, “What am I working for, Richard?” He answered, “You are working for 65 Roses.” Mary was speechless.  He could not see the tears running down Mary’s cheeks as she stammered, “Yes Richard, I’m working for 65 Roses.”

Punkie Bear Beck continues to be a sweet blessing.  We feel so privileged to be able to take care of him.  We pray often for his little body, as he has a few more struggles digestively then Asher does.  We tried introducing milk to him again about a month ago, but it was quite obvious that he is still allergic and his body was not happy.  We keep praying that he will be able to outgrow this allergy.  

We’re also having to do blood work with Beck about every 1-3 months to keep an eye on his elevated liver levels.  We’re praying for these levels to stay in the normal range.  Liver disease is common in people with cystic fibrosis, and can quickly cause a lot of damage.  If we’re able to catch this right away we can put him on a medicine that will help.  Beck has an awful time with the blood draws…obviously, who likes them…especially when you’re a baby and you don’t know what’s going on.  All of his blood draws at this point have been pretty traumatic because Beck’s veins are small, which makes them hard to find and usually involves a few different pokes to get enough blood.  Unfortunately, his head has been the most successful spot at this point.  He’s such a trooper.  I hope he knows one day that this is really helping him.

I still cannot believe this video.  He seems too little to be able to climb this ladder, and pretty fearless to launch himself over this slide!  He’s definitely been watching and learning all of these characteristics from his brother :).

Asher, Beck and I went on a little adventure to walk around the lake and have a picnic at Fountain Hills.  It was a beautiful brisk day, which totally warranted matching plaid shirts for the boys :).

These birds saw Asher coming a mile away, ha!  They sort of attacked him, and he sort of squealed like a girl and chucked full pieces of bread at them to make them stop advancing.  I totally get it, buddy, birds are shifty.  You can’t trust those things!

Beck, on the other hand, wanted to kiss and hold the ducks.  The ducks were actually smart enough to know anyone their own size did not have food, and they were probably mean, ha!

Asher, my boy, you are all speed.  You own it.

Is this not one of the cutest things about babies!!!  I just love watching him tackle a door frame or small step :).

It was probably one of our last really cool days before Summer hits, so we soaked up every moment we could.

Hope Kids is a wonderful organization that provides special events and fun activities for chronically ill children.  They bring a lot of smiles to children’s faces.  We have been so blessed to be able to enjoy a few events thanks to all of their hard work, and the generosity of local companies volunteering their time to bring hope to these children.

We’ve made some great memories, but Sky Kids will absolutely go down as one of our favs.  Asher was able to fly a plane!  Usually the invitations for events are just for immediate family, but this time Asher was able to bring a friend.  He asked to bring his cousin, Rush, and they had a ball together!

The pilot told the boys that we needed to walk around the airplane and make sure everything looked good before we started.  The boys were responsible for making sure the tires, gas, and wings were worthy of travel.

Asher loves a job.  He loves being responsible.  Any time the pilot spoke, or asked him to do something he was on it.  “Turn right, turn left, we need to keep the plane on this red line, can you find the other plane that our traffic controller told us about.”  He was so happy to be helping to fly the plane :).

It was so cute listening to Asher and Rush talk on the headsets.  They thought it was the coolest.  I love how you can hear them giggling in this video.  Lots of talk about what they want to do when they grow up, how cool it was to fly, who’s been in an airplane before and how many times, and whether or not the K9’s were going to be there when we landed.  I should have recorded the whole thing, it was a crack up.

He even got his wings :).  When we were walking back to the hanger I asked Asher what the pilot said to him.  Asher said nonchalantly, “He said he would fly with me any day.”  I’m not going to lie, there were tears!  How sweet is that.

Thanks for giving our family another memory Hope Kids!