Around Here: Week 18

 Going... Screen Free (mostly) for the week.  (I hopped on here today to stay on track with my "Around Here" posts, and Josh watched a show or two in the evenings, but I worked hard to be either doing chores or reading my book instead of watching.)  I deleted Facebook & Instagram off my phone and only went online to check my email and pay the bills Monday.  It felt good to be screen free, and I got SO much more done than I do when I'm partaking in the screens. It was a good reminder that I'm in charge of how I spend my time.  I'll be visiting this subject again, in more detail, in a post that is coming soon.

Celebrating... Logan's trip to the neurologist. Basically his Chiari Malformation is minor (in size) and he is currently asymptomatic, so it's as if nothing were wrong at all.  Of course we will always keep an eye on any symptoms that crop up, but many people live with Chiari without ever showing symptoms, so that is our hope for Logan.  As for Jack, concordance rates for twins are not available, so unless he starts showing symptoms, we will not be testing for it as it's not medically necessary.

Grateful... that we are (all) finally well.  After 11+ days of sickness (vomiting, diarrhea, abdominal pain) passing from one to the other to the other and finally to me, and then to Josh, it is over. Hallelujah.  I have bleached and Clorox wiped this house from top to bottom in hopes that we'll be well from here forward. I knew starting the kids in school that they'd bring home new germs, but that one takes the cake. It was a beast!

Thankful... for Josh's sister for keeping Wyatt & Carly so I could drive just the twins to Logan's neurology appointment at the children's hospital. It's over an hour each way, and it was so nice to only have the big boys to worry about.  Also thankful for Josh's cousin who came over that day and decided to sweep & mop my floors for me. Whenever she's at our house, she does some act of service (painting my walls, bringing a meal, delivering wipes) and she's such a shining example of what being selfless truly is. Thank you Januari!

Enjoying... a crazy thunderstorm last night.  It was like a strobe light, so many strikes and so much loud thunder. It woke me up a few times and was just really fun to watch.

I am also currently enjoying having a daughter. Putting her in dresses and cute shoes everyday never ceases to bring me joy!!!  I also enjoy how she walks with her hands behind her back, which the boys call "walking like a gentleman".  I was so excited I finally captured it with my camera!

Attending... the twins' game Thursday.  I hadn't been to a game yet, so it was really exciting to load all the kids up & go root for those talented big brothers of ours. Carly would clap every time we cheered, and Wyatt ran into a friend on the playground which kept him entertained.

When we found out that it was twin boys at my 20 week ultrasound, one of the first things Josh said was they could play on a baseball team together. Watching that dream finally come true nearly a decade later has been so beautiful.  Josh loves coaching them, and the boys are really finding their way.  They're hitting consistently and getting better at catching & outs as well.  I am one proud mama!

Meeting... with each of the boys' teachers to discuss progress towards spring and what, if anything, we will need to work on over the summer.  All three teachers said our boys are like sponges, absorbing all the information they can.  Their grades are fantastic and they all love reading.  We will work on continued reading, writing & math over summer in hopes they don't lose any of the progress they've made this year.  It sure feels good to see how well public school has gone this year, and it feels even better to hear the teachers say what good, hard working boys we have.

Freaking out... about being a homeowner.  Wednesday night I got home from the twins' practice followed by Wyatt's practice to find Josh upside down in a giant hole he dug in the yard, attempting to fix a leak we had in the water line that split from the street.  One direction split off for our house and one direction for the sprinkler system.  The valve busted.  And we were without water.
After our week and a half of family stomach flu, plus my trip to the children's hospital, I was desperately behind on the laundry as it was. I didn't have time to get further behind.  Not to mention I had a sink full of dishes, four dirty kids plus myself and Josh who would need showers in the morning.  We took a deep breath, called a plumber and sent up a prayer that it wouldn't break the bank.  One hour and $400 later, we had a fixed valve and running water.  Praise the Lord!

Watching... Patriots Day with Mark Wahlberg for date night last week, and sobbing the entire time.  The whole thing was so unbelievable and the resilience of people inspiring.  We also saw Moana last weekend for the first time, which meant I spent the whole weekend singing "You're welcome."

Next week I have a blog post penciled in to post everyday in an effort to clear my dashboard before summer, as well as lots of baseball and plenty of sunshine in the forecast. It's gonna be a great week!

***

Logan, Epilepsy & Type 1 Arnold Chiari Malformation

Logan.

My sweet Bogan.

He was so tiny when he was born. Just four pounds, six ounces, and only 17 inches long. During his time in utero, he got the leftovers.  That's how my OB described it. Jack's umbilical cord was the first exit off the nutrient freeway, so he got more of the good stuff than Logan.  Because of this, Jack weighed in at nearly seven pounds. 

Just three days after he was born, they let us take him and his brother home. 

I remember that first night home, singing to Logan as he fell asleep for the night. 

"You are my sunshine, my only sunshine...

Please don't take my sunshine away."

And I broke down in tears. Here I had this fragile little bird, this tiny person, who was entirely dependent on me for everything, and I felt so helpless.  So vulnerable to his needs, and to my need for him to be okay and to survive. 

Suddenly I am there again. Only now he's big. And strong. And smart. 

And yet I'm worrying like I did when he was shorter than Josh's forearm. When his head fit easily in the palm of our hands. 

Last Friday afternoon I got a very unexpected phone call. It was a nurse from Logan's clinic calling to tell me there was an abnormality on his MRI.  Something called Type 1 Arnold Chiari Malformation that means basically instead of sitting where it should, in his skull at the base of his neck, Logan's cerebellum is growing down into his spinal column.  Sometime in utero, while he was trying to grow as hard as he could with less nutrients than he needed, his skull didn't grow as it should have, and now to make up for the structural defects, his cerebellum is growing down, into his neck. 

The cerebellum controls balance, mostly, and symptoms of Chiari Malformation can include:

• dizziness
• muscle weakness
• headaches
• numbness
• vision problems
• coordination/balance problems

Many people with Chiari Malformation are asymptomatic (without symptoms) and from what I read, it isn't related to his seizures in any way.  Regardless, in the beginning of May we are headed back to the neurologist to discuss what this may mean for Logan moving forward. 

As you can imagine, I have quite the list of questions for the doctor. The main one being, "Will this effect Jack?" It's funny because most times, Chiari is diagnosed from imaging done for other reasons. In Logan's case, we were checking for any issues in his top left hemisphere, where his seizures are located, and while there was nothing there (praise God, no tumors), we did find this malformation.

Of all the types to have, Type 1 is the best, which offers some peace, and he most likely won't experience symptoms as a child, (they tend to come on during adolescence or adulthood) but if he does start experiencing symptoms, surgery is the cure. So it's scary stuff.

In the meantime (between now and our meeting with the doctor) I am reminding myself that Logan has had this since birth, so there's no need to panic.  I am also reminding myself that God's got this.  He has walked us through Logan's seizures and epilepsy diagnosis, sent us an amazing doctor, and now has Logan's side effects from his seizure meds completely eliminated.  He can also walk us through whatever this journey may hold.

***

Sidenote:

I have chosen not to share this diagnosis with Logan just yet because (like his mama) when he hears about potential side effects or symptoms, he tends to have them (or at least he thinks he's having them). So to protect him from himself, Josh and I plan to keep this quiet until it feels appropriate or necessary to share with him.  Thanks for understanding & (if you know us IRL --in real life--) thank you for not sharing any of this with him or his brothers.