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:
- All plexiforms are STABLE!!!!!
- No signs of optic gliomas (tumors in the nerve behind the eye)
- 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.
- 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.
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.
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.
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!
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.
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.
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!
The kids had such a fun time and we got some super yummy strawberries that, obviously, didn’t last long.
We took up two tables for the welcome dinner!
CTF loves on our kids…all of our kids!
Saturday, Mark and I sat in on meetings and learned a bit more about the research that CTF has helped fund. We also learned about new treatments and patient initiatives that we are looking forward to getting involved in in the future.
Tobin…well, he made friends (several people tried to take off with him and get all his cuddles), ate furniture and in general entertained everyone he saw.
After the conference on Saturday, we ate at The Varsity because…well, because we were in Atlanta of course! I couldn’t resist getting some pictures of our kiddos all matching in their CTF shirts…especially with the Olympic Torch in the background.
