Play Ball!

Our local minor league team had a scout night in June.  They invited all sorts of troops out to watch a game, camp in the outfield, and settle in for a movie.  Mark took the girls.  I got to have a “guy” night with my boys after the littles were in bed.  As the game was ending, the organizers realized that a giant thunderstorm was heading their way.  They had to cancel the campout but they offered for them to enjoy a movie on the big screen.  AND in VIP seating.  They were so gracious to offer the movie and even threw in free popcorn.  The girls had a blast. Mark napped on the balcony while everyone enjoyed the movie. Parade before the game.

Ceili Rain won a pair of glasses.

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Swim Training

Bryant, Malachi, and Emmie had swim lessons in June.  Bryant technically didn’t need them but I was paying for three slots so I had him go to improve.  He improved and so did Malachi.  This was Emmie’s first swim lesson and she is still getting used to being in the water.  She did good and she loved her teacher.

Miss E rocked it with our kids.  They loved having her there.  This was the first time we’ve done lessons at this place.  I loved that it was a semi-private lesson and she was able to teach to each child’s ability.

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Fins Up 2018

Our June the past two years has been all about swim.  Practices in the early morning.  Meets every Tuesday in the heat and humidity.  It’s a chore but the ones who do it seem to enjoy it.
Mark and I (and apparently Tobin) survived on coca-cola! I tried to get pictures of each of them swimming but rest assured, it was Liam, Silas and Ceili Rain.  They all worked hard and improved times throughout the season.  Ceili Rain loved each part but there’s not much that Ceili Rain doesn’t enjoy!

But by the end of season…swim parents are done.  Just done.  Mark was our model for this one.

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Number 9 and Brace Yourselves…Again

Emmie had her ninth MRI at the end of May.  Tobin got to hang with us this time.  It was a long and very hard day.   We, of course, don’t know the details but whoever went before Emmie was a pretty difficult case.  She was scheduled to go back at 9.  She didn’t get back until noon.  It would have been so easy for us to get angry but what good would that have done any of us except to stress out the staff even more.  So, we made the best of it.  Emmie watched three movies and was content to just chill even though she had gone so long without food.  We always pack a hospital bag and we found things to do in the bag and the nurses brought things for her. We all got some good old cuddles.   When she went in the tube, we got a blanket and Tobin had a good time with her balloon. This kid was SOOOOO out of it after her MRI.  It was hilarious.  Next time, we’ll have to get a video or at least write down all the silly things she says.  She devoured everything we gave her to eat the rest of the day.

So, the report was like this:

  1. All plexiforms are STABLE!!!!!
  2. No signs of optic gliomas (tumors in the nerve behind the eye)
  3. The tumor in her neck is going down near her right lung and it appears to be in front of it and not pressing on it.
  4. There appears to be some narrowing of blood vessels in her left cerebral artery (stenosis).  It’s not on any major artery and she is symptom free.  Recommendation was made to have an MRA which is like an MRI but looks at the blood vessels.  When we met with her neurologist in June, we asked that she has it done sooner rather than later to see what’s going on.  I’m purposely not posting more information because we just don’t have any solid answers as to what is going on yet.  We have an idea but nothing firm. Emmie will have the MRA August 29th.  It’s not  a long test but she’ll have to be put under general anesthesia again.  Please pray for her and us during this time.  We know God has big plans for our hero.  We see all He has done through her every time we glance at her.  While this information is very scary, we are trusting in Christ through it all.

Now back to all things May…
The day after her MRI, we headed to our favorite people…the orthotists!  It was a loooong appointment as she had to be fitted for her brace.  But, again, we kept busy.  Netflix and wifi—thank you!

She did great.  But these pictures only tell half the story.  Two days of poking and prodding and our girl was so sad by the end of this second day. After we finished with the fitting, she jumped into her daddy’s arms and had a good ol’ cry.  Our orthotist thought something was wrong.  No.  She’s just tired.  She has to wear a brace and has had to wear one most of her life.  This.  Is.  Not.  Easy.  Our brave girl trusts that what we are doing is for her good.  By the end of the first week, she was already up to wearing her brace 16 hours a day.

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May Randoms

A girl and her dog.  Early morning snuggles with Emmie and Lulu. Ya’ll, this chunky monkey is a trip and a half.  We are so blessed with his little rolls. Mark got to be on the other side of a hospital bed in May.  He had a rather large kidney stone blasted! I got married!  No.  Not really.  In January of 2017, I realized my nickel allergy had progressed to the point that my wedding band was causing a pretty painful reaction (think burns all the way around my finger).  I’m fairly certain that our college poor selves had purchased 10K gold and I could possibly wear 14K or 24K gold but frankly, I don’t want to spend that kind of money and still have issues.  So, I wore a cheap $30 ring that was too big for a long time.  Finally, we tracked down a sterling silver one that fit a little better.  I love it!  I’m still hoping one day to get a platinum or palladium one and one day to have my pretty diamond re-set but for now, this one will work great! Tobin in a side by side with one of his partners in crime (G was born in March of this year). We somehow fit in the last homeschool skate of the school year.  Our kids love this time!
Zoe finished up her American Sign Language class by having breakfast with her classmates, teacher, and one of her teacher’s friends who is Deaf.  They were on “voice off” no one could talk the entire time.  If they did, they had to pay their teacher 50 cents.  She said her class did great and their teacher and the friend were super helpful!  Zoe is looking forward in continuing to learn ASL through the years to come. Tobin decided people food was a-ok for him and does not like it when it’s gone. NF Awareness day…Emmie and I were twinsies! I have no doubt these two are going to get into all kinds of mischief.   Mark and I celebrated 18 years!  We began saving this year for a 20th anniversary trip!  I can’t believe he has put up with me that long.  We celebrated at a local coffee shop that had a top class Irish fiddler come in.  Such a sweet intimate and fun evening. We heard about open auditions for Cheaper By the Dozen and Ceili Rain jumped at the chance to audition.  After the first night of auditions, Ace decided he could try it out too.  They both did great!  So great, that they both got called back!  They didn’t make the final cut but Ceili Rain is sold that the stage is the place to be. She’s looking forward to acting classes this fall.
Tobin’s first bite of cold applesauce… Every bite ya’ll! It is near impossible to get a picture of Emmie without her posing.  She’s adorable.  This is her new swimsuit I made.  The end. This boy LOVES the water. I have never had a baby who thrills at sticking his face in, kicking his legs, and splashing everyone and everything. He gets splashed, no big deal he just blinks it away and keeps going.  I hope this continues! Walls…eat them.  Love them.

Emmie was hot.  I was hot.  Everyone was hot.   Daddy was out of town.  It was long night at our first swim meet.

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May Travels

Things were really hopping in May!  I mean REALLY hopping!  I thought it would get easier when June rolled around but then…swim.

Anyway, at the end of the month, we shipped Ace off with Papa and Grandmere for a mission trip and also had MRI #9 and a new brace fitting.  We managed to squeeze in a visit with Ge & Granddaddy in between Emmie’s appointments.

Ace worked hard and learned a lot on the mission trip.  We missed him so much.  I think he missed us a little but he told us later he really enjoyed having the quiet.

Hanging out with Granddaddy is always a treat.  They have matching heads! After all the appointments, we headed out to a local park.  It was a good stress reliever. We were even able to cool off in the splash pads! Tobin was done by the end of that day.

Emmie’s new Rigo brace.  She has adjusted very well to it.  Her orthotist told us she was the youngest at CHOA to be fitted for this brace.  We learned in June that up until that month, she was the youngest at CHOA to have a halo brace.  My girl, breaking the mold since 2014.

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Better When I’m Dancing

Emmie with her ballet teacher, Miss Mallory!

Emmie had her first ballet recital (and it happened to be on our wedding anniversary).  She was beautiful and loved every second of it! I think she fell in love with the stage! I even got her hair up in a bun! Emmie takes ballet with a group called Steps of Grace.  This is a great ballet group for ALL kiddos no matter their level of ability.  What’s wonderful to me is that her ballet teacher is an occupational therapist and there are volunteers that work with the kids who are in school to be occupational therapists.  Emmie has grown, no doubt, because of her ballet class and we look forward to the next year of dance!

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Happy Birthday Super Ems!

Emmie turned 4 in May!  Ya’ll, can you even believe it?!  Four years ago, I could have never imagined the journey we would have with this girl.  I’m going to post an MRI update soon but May and most days, we get to celebrate our amazing super hero. These are the warrior beads we started with Emmie.  They’re in order, left to right, and each one represents a year of her life.  Yes…that second year was a rather active one.  It’s been great to see the beads stay a little smaller since then! Partying first with Ge & Granddaddy.  She was so excited with each gift she opened.

We squeezed in gift opening between a Lady’s brunch at church and swimming and concert.
She was so excited with each gift.  Her highlight were Ladybug Girl books.  When Emmie had her first surgery, my mom and I were walking in the lobby and happened upon a book giveaway.  The volunteer told us to grab a book for our girl.  I found Ladybug Girl Goes to the Beach and thought it was cute.  We sometimes call Emmie’s cafe au lait spots ladybug spots…perfect.  Little did we know how she would fall in love with that book.  Over the past few years, she has made every single person in our family read the book to her and some of us have to read it over and over.  Of course, the girl’s name is now Emmie (originally Lulu) and the dog (who is Bruno originally) is now Tot Tot.  She asked for a ladybug cake and ladybug wings.  Of course, I can’t stop there…she had to have an outfit just like Ladybug Girl.My first attempt at using rice crispy treats to sculpt did not go well. I pulled it off though.

Our beautiful Ladybug Girl!

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Symphony and Stars

Our local symphony puts on a free concert at a local park once a year.  It’s always the weekend of Mother’s Day.  I believe that since they started this concert, we have missed possibly one or two concerts.  We’ve been going since Zoe was a toddler.  For the past several years, we declare this my Mother’s Day treat.  This year, I got to share it with Emmie’s birthday. Tobin enjoyed the music and cuddling with big brother. Our ladybug girl had quite the night.  She had a wonderful time but ate way too much and wound up throwing up towards the end of the night.  After that, she was much better.  Never a dull moment with our crew. We met up with several families from our church, picnicking and visiting. Beautiful sunset after we watched the clouds form and a rainstorm barely miss us!

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