Into the Woods Trip 1

Posted on September 23, 2018 by Abbie

July brought us a too good to pass up purchase of a travel trailer. It’s a hybrid/expandable one with three beds and a table and couch fold out bed. That means all 12 of us fit in it and my dream to take the kids to see the lower 48 states might actually happen. We took Dolly the Camper out on her inaugural trip a few weeks after she came home.
Everyone pitched in learning how to set her up. Even storms couldn’t dampen our fun spirit. Tot and Lulu enjoyed making sure the beds were secure. Ace the shark doo, doo… We scored a sweet deal on a nice inflatable kayak on our neighborhood trade page and decided to get a decent two person inflatable kayak so people wouldn’t go out solo (or fight over the single kayak). Those got tested out. And everyone enjoyed splashing while waiting their turn. We are looking forward to many more adventures with Dolly and our kayaks!

Swim Finale

Posted on September 22, 2018 by Abbie

I would have had more pictures had it not stormed the entire awards day. But Silas won the award for most improved. He was excited.

Liam was glad he survived the season and Ceili Rain was pumped to keep swimming. Proof that I survived the season is above.

Happy Birthday Mark! 2018

Posted on September 21, 2018 by Abbie

We celebrated Mark’s birthday in between activities this year. His birthday fell on the same day as the kids end of year swim party (which was surrounded by severe thunderstorms). Regardless, I think he enjoyed our celebrating his last year in the 30s!

Ice cream cake…it’s his requested cake every year.

Pickin’

Posted on September 20, 2018 by Abbie

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.

Number 10 and Fighting On

Posted on September 6, 2018 by Abbie

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:

There were no signs tha
t she has had a stroke and no signs that a stroke is coming in the immediate future!
This isn’t like her kyphosis where everyone tried to scramble to figure out how to work it. Stenosis is something that neurosurgeons are familiar with.
There are no signs of a tumor causing the stenosis!

Prayers and next steps:

Dr. W is talking to Emmie’s current neurosurgeon to see if he is comfortable with working with her. If not, there is another neurosurgeon at CHOA is very familiar with stenosis and she could be referred to him. We know of this doctor and have already been talking with another NF mom whose daughter is seen by him (I LOVE social media for this very reason).
Please pray for wisdom for the doctors. There is a procedure they can do but it has to be done at the right time. Too soon and the brain won’t recognize the need for it. Too late and we’ll be dealing with after-effects of a stroke etc.
We’re in the process of getting in touch with another neurosurgeon just to have her scans reviewed. We were told about him, again from a mom who has already walked this path. He is familiar with moyamoya and other vascular issues as well as with NF…basically he is a leading doctor in this kind of stuff.
Dr. W was adamant that Emmie not get dehydrated. She’s at a greater risk of stroke and any change in blood pressure puts her closer to having one. Stomach bugs mean a trip to the ER to get fluids and monitor blood pressure So, if you hear us pushing water on her, it’s because of that! I have to say this is putting my stomach in knots. Kids get stomach bugs all the time. My kids are no exception. Mark and I are pretty laid back with taking our kids to the doctor much less to the ER. We jokingly say we are the “I’ve seen bluer” parents. Please pray for us that we can be diligent and pray that she can skip the stomach bug for forever.

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

June Randoms

Posted on August 25, 2018 by Abbie

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!

Happy Birthday, Josiah 2018

Posted on August 24, 2018 by Abbie

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

Play Ball!

Posted on August 23, 2018 by Abbie

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.

Swim Training

Posted on August 22, 2018 by Abbie

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.

Fins Up 2018

Posted on August 21, 2018 by Abbie

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!