Now back to our regularly scheduled shenanigans during the month of July.
Blueberry picking is a favorite and requested event every year. Okay, the heat does produce quite a few grumblers but the reward of blueberries throughout the year to enjoy is well worth all the complaining and the thirty or so minutes of complaining.
This year, Emmie worked super hard to get the blueberries and to snack on them. 
I’ve been trying to get this squeaked out for the past week. I wasn’t sure how to start or whether I even wanted to. Putting it in writing on the blog kind of makes it official. There’s still a lot up in the air but one thing is certain…Super Ems is fighting another battle.
Emmie did wonderful with anesthesia and getting through the whole procedure as usual. Our girl rocks through all of it as usual and Tobin made sure to sympathy cry through getting the iv out.
We talked with her neurologist, Dr. W on Friday. And we received the report yesterday.
Let’s just hash out the details and then go from there:
Emmie definitely has stenosis of the left cerebral artery. Stenosis is a narrowing of the blood vessels. The cerebral artery vessel is significantly narrow. Dr. W told us that she is getting blood flow to the left hemisphere but it is very slow because it has to come from the right vessel. There are no signs of tiny vessels forming which would lend to a diagnosis of what is called moyamoya (pretty interesting to read about and is something that can happen in NF). He told us that it could be we are at the very beginning of moyamoya but it’s really just too early to tell.
We asked Dr. W if this was an NF thing and he said it was. It’s not common but it is definitely something that all NF doctors are familiar with and so are other doctors.
Big praises though:
Prayers and next steps:
There. That’s the raw facts in layman terms. If you’re really curious what the scans look like, let me know and I’ll send a couple of screenshots I took. It’s very evident that something doesn’t look right.
I go from just plugging along with life to holding my breath. I watch our lively four year old bossing her siblings around, laughing at silly tickles, running and dancing. It’s hard for me to believe that her beautiful little brain is having to work so hard to keep plugging away. I’m in wonder and complete awe that God has chosen to protect her from any harsh effects so far as her body continually battles against itself. We are trusting God right now as always for HIs loving protection of our superhero. We know that He knew Emmie long before we did. He created her and knows each breath she takes. Each hair on her head. And yes, each blood vessel and vein in her body. Those promises lead me to trust Him even more and to know that no matter what, He is still our God. Our Abba, Father.
“For I, the Lord your God, hold your right hand; it is I who say to you, “Fear not, I am the one who helps you.”
Isaiah 41:13
We had a lot of random things going on in June!
Zoe decided to go for the ultimate sour sno-ball from our local sno-ball place. It turned her tongue electric blue!
Emmie decided to put a lego piece in her mouth. And promptly swallowed it. We never saw it come out the other end but we’re pretty certain it did. I took her to the ER because we always freak out when it comes to Emmie’s airway…stupid tumors.
Not the exact lego…just a replica.
Tobin because…cuteness.
This girl is absolutely adorable!
Tobin learned to crawl into cabinets.
The boys on their “guys night” with junk food and a movie.
Lego time means everyone pretty much gets along.
Miss Kristina is back in town! Tobin was thrilled as you can plainly see.
Emmie was a brave girl during her ophthalmologist check up. Her strabismus (eye turning in) is not correcting with plain glasses. So, we went to the next step, bifocals. Of course, that meant another eye dilation. She was so brave and a stop for an icee and Target Dollar Spot cleared up the tears.
Tobin made friends with Ringo, the robot vacuum.
Building with Suspend. It’s a super fun game but also fun to just see how you can balance the sticks.
Malachi wanted to write a note to Papa when he heard that he was sick.
Mark’s birthday/father’s day present was the farewell concert of Third Day. Since nursing babies probably won’t enjoy loud concerts, he asked his college roommate. They had an absolute blast and got to catch up quite a bit on the drive to and from the concert.
Lulu is scared of storms. There were quite a few in June.
Tobin got to work sanding the floors in the school room.
He was paid in cuddles.
And naps.
Best purchase of the swim season were these spray bottles. 
White and a belly crawler…nope.
You’ll have to zoom in but that passenger seat kind of freaked me out before I realized it was a mask.
A stuffed Malachi stuffed with stuffed animals.
Smudge, the cat, he likes to visit this cat in the mirror. Every day.
Emmie cuddles never get old.
We love sno-balls!
Liam rescued a turtle that somehow wandered into our backyard.
A huge tower.
Funny story: The kids were playing with these and two little girls walked by with their dad. The girls slightly freaked out. I apologized to the dad but the dad just lost it laughing. 
Emmie twirling in her new brace!
Josiah turned 11 this June! I can’t believe how much he has grown. He picked out his cake by looking at my pinned recipes on Pinterest. Banana Split Layer Cake won out! It was absolutely delicious and so much fun to make. It turned out way prettier than I thought it would!
And the requested breakfast was Sour Cream Doughnuts because…yummy! Honestly, I have become a sour cream doughnut snob. I really don’t like them from other doughnut shops now. They have too much salt. This recipe is just right.
He was super excited for present time.
His want. The kids have figured out my “do” gift scheme. Nerf guns…Can anyone say Nerf Wars at the end of the year?!
Emmie nicknamed Josiah “Bubble” when he decided he wanted her to call her “Bubba.” She kept calling him Bubble…and it stuck. He loves being “Bubble” but has insisted only Emmie will call him that. I believe he’ll change his mind when Tobin starts talking. Anyway, what an appropriate gift bag, huh?!
This kid loves the Lego Architecture series.
A cake as big as his head.
Layered with strawberry and chocolate icing…it was seriously amazing and super rich.
Josiah’s Want: Lego Architecture-London
Need: watch (it’s a fun fitness watch…he loves trying to get in 10,000 plus steps a day)
Do: Nerf Gun
Read: Douglas Bond book
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.
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.
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.
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:
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.
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.
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.
