Everything is Awesome!

Posted on September 19, 2014 by Abbie

For Ace’s big decade birthday we thought we would surprise him with a trip to Legoland Discovery Center. Admittedly, by the time we got to Atlanta he knew what was up. Especially since we have watched the Lego Movie a ton of times. Figuring it out didn’t dampen the mood. Every one was stoked to be there.

The Lego creation of Atlanta was super cool for me. I grew up visiting Atlanta and seeing so many of the places we visited, brought back lots of great memories. I believe the kids tired of hearing my memories but oh well.

This Lego police motorcycle was a major hit for our community helper-truck lovin’ boy. He even pretended to write me a ticket. Bless him! All I was doing was taking pictures of him. He stayed here pretty much the whole time.

Papa & Grandmere made a special trip out to meet us which thrilled our boys to no end.

Zoe left her mark.

All sorts of cuteness in 3D. He left the glasses on through the whole movie.

We ate lunch just outside of the mall and Papa & Grandmere brought gifts for Bryant and Ace.

Ah, a Transue joined us. Here she is with her lovely head piece.

Of course Ceili Rain had a blast with the girly stuff.

And then Ace was allowed to take all his birthday money plus a set amount from us to pick out a set. He had that overwhelming face of excitement the entire time we were there. I mean it took him a good hour to decide what he wanted.

Something to note if you ever go to Legoland Discovery Center. Due to space and fire marshall codes, they can only allow a certain amount of people in at a time therefore they have a policy that you can not re-enter. That would have been fine but we purchased group tickets and the site for group tickets said nothing about that. Nor do they have that posted as you go in or as you are about to leave. So, be prepared. Also, it is in a mall so don’t expect the giant Legoland theme park experience. It was fun and worth it for all our Lego lovin’ crew.

A Sale

Posted on September 18, 2014 by Abbie

Check out what is going on at Lilla Rose. Until 5 pm today!

What a great chance to stock up on some Christmas gifts!

Click here to go to my page.

Happy 10th, Ace!

Posted on September 17, 2014 by Abbie

I now have two children who are cruising into the double digits. Woo-hoo!

We surprised Ace with a special trip (I’ll post that tomorrow). He requested a carrot cake with cream cheese icing and a week before his birthday he asked for an edible sheet with legos on it. Thankfully, it got here in time.

Despite that face, he was having a good time. Friends came to eat our food the day of.

Ace is growing into a great young man. Of course, he looks like Mark at that age. We can’t wait to see how God will use him this next year.

Happy 4th Bryant!

Posted on September 12, 2014 by Abbie

Bryant, our little boy who has always acted older than he is. He turned 4 in July. His biggest excitement actually came from his graduation to a larger fork. And opening the presents…

We were going to go to the free summer movies to celebrate his birthday, however, we had a few kids fighting a virus (high fever), so we opted to keep our germs to ourselves and had a Character House of Movies!

The kids get to pick out what kind of cake they want each year. This year he voted for a strawberry cake with chocolate icing and elephants on top. Thus he got this.

I added the graham cracker crumbs on top to make it look like a desert (a desert dessert…see what I did there?) We had church that evening so I made a few extra cupcakes to ensure we had enough
.

The birthday boy, cake decorator, and his trusty sidekick.

Lake Day

Posted on September 11, 2014 by Abbie

In July, we had one of our church worship services at the lake and several baptisms. After worship and a meal, it was time to hit the lake and play!

Lake sand-dirt. Oh yeah.

Water ball.

Emmie enjoyed chilling in the shade with mama.

Building sand-dirt castles.

Welcoming Emmie

Posted on September 10, 2014 by Abbie

We decided to have a special welcoming celebration this time instead of a traditional baby shower. We invited a ton of people and had a blast with all the families that came.

Mr. Grady hamming it up.

Lots of kids meant lots of love for Emmie

Aunt Tracy was super excited to get some Emmie love.

Play time!

I have no explanation for this.

Sweet cuddles from neighbors and

church family.

Mark welcoming every one and giving a blessing for Emmie.

So much fun even the cops show up…okay, actually that is a friend of a church family member.

Hmmm, what should we choose???

Some awesome members from church who willingly served and helped get everything together.

Fruit baby

Happy 4th of July!

Posted on September 9, 2014 by Abbie

Our fourth was full of fun times with family and friends. We enjoyed a cookout with friends and then came to our home and set off fireworks with friends.

How many kids can fit on a swing?

Mark was our pyrotechnician!

Part of the goofy audience.

What we know

Posted on August 26, 2014 by Abbie

-Emmie had her MRI on August 16th. She did amazingly well and Mark and I pulled through with a few tears but we made it. It helped that she fought the sedation instead of going in to a deep sleep. She’s a fighter.

-The MRI showed NO neurofibromas (tumors) on her brain or optic area (a concern with NF).

-What we thought was a plexiform neurofibroma, is a plexiform. It extends down to her spinal cord but is not yet pressing on anything which would cause problems.

-Because of the location and the fact that the plexiform is increasing in size, our pediatrician was anxious to get the MRI scans looked at by a pediatric neurosurgeon. Our geneticists were already working on this.

-We heard back from the neurosurgeon today and he did not feel she needed surgery at this time! We will be following up with a neurologist very soon.

-Just because she does not have to have surgery at this time does not mean she will not have to have surgery in the future. Especially if it continues to grow.

We are praying and praising God that at three months she doesn’t have to face surgery right now. The older and bigger she gets the better it will be for her surgery. So, please pray that she continues to grow strong and healthy and that the plexiform will slow down its growth.

What we don’t know:
-When she will have to have surgery or what will constitute the need.
-What NF holds for Emmie on a day to day basis.
-If her tears are normal baby cries or cries of pain (seriously makes it harder to be mommy when I just can’t tell some times).
-How this will affect her or our family in the immediate and far off future.

We are trusting God and leaning on Him as He holds our hands (and sometimes carries us) through this journey. He has already blessed us with amazing people in our path, my best friend from high school who just “happens” to be a doctor at the hospital that we are going to and a pediatrician who we consider a friend and who takes lunch breaks and after hours to work on advocating for us and getting answers. And who we know is praying for Miss Emmie as we walk this road.

A friend recently commented that she didn’t know how we were doing this. Honestly, some days I just get really angry and others it’s just a normal day. But on the vulnerable moments I bow my head and pray. And I know that I couldn’t get through any of this without God’s love wrapping around us. I’ve said it before and I’ll probably say it again, we are so blessed that God chose us to be Emmie’s parents and to be Zoe, Ace, Liam, Josiah, Ceili Rain, Bryant, and Malachi’s parents too. What a privilege we have to love them the way Christ has loved us!

And if you are wondering, this is still a blog about our whole family. I definitely have plans to post more happenings because in the midst of all this uncertainty, we are still living and doing. Hopefully, I can get more pictures up soon but again, we are living and doing and our life is so full right now. I wouldn’t have it any other way.

On Our Toes

Posted on August 7, 2014 by Abbie

Emmie. Our dear girl. With all the business and craziness a large family entails, this little one does not want us to forget she is here. From the beginning, she has wanted to make her voice heard and I pray she does that for the Lord’s glory.

We’ve been waiting to write this until we had a confirmation. Waiting and thinking. And yet, I would try and think of what to write and I had nothing. Nada. How does one go about discussing a life changing diagnosis. And especially when it involves your baby. I guess we start at the beginning.

It began with a few coffee/milk color spots. We noticed one on her leg. I decided to look up what those birthmarks were called and Dr. Google delivered way more than I ever wanted to know. After finding out that the spots were cafe-au-lait spots, I did a glance over on Emmie. She had seven. Hmm, interesting. Dr. Google told me that six or more indicated a genetic disorder but could really be nothing.

So, we waited two weeks. We waited until Emmie’s check up. As those fourteen days crept by, we noticed more spots starting to form. Getting darker. By her appointment we were up to at least sixteen noticeable ones.

Our pediatrician confirmed our fears and started the referral process to specialists.

Today, we met with a geneticist in Atlanta. And what was suspected by our pediatrician was confirmed by the specialist. Emmie has a clinical diagnosis of neurofibromatosis type 1 (NF1).

While the chances of this being life ending are extremely slim, there is a greater chance that it could be life altering. There are a lot of “well, we just don’t know right now”s floating out of our mouths. This is a genetic disorder that has an extremely wide range of complications and, as of right now, there is no way to predict what to expect.

Here’s a video from Children’s Tumor Foundation (one of the leading researchers in the field of NF) that starts the explanation (this is also a plug to support their foundation…just fyi):

Here is a link giving a bit more information on NF.
Information on NF1 can be found here.
And here is information on the different types of neurofibromas.

Right now, Emmie meets the criteria to be diagnosed. I’ll try to answer some questions but if I don’t cover a question, please feel free to email us. We are willing to talk about it.

She has six or more cafe-au-lait spots and, according to the geneticists and our pediatrician hers are classic spots. She’s getting more. They are barely noticeable in some light. Apparently, the darker your skin pigment the easier it is to see them. Emmie is very pale so at times it’s hard to spot them. But they are there. On her thigh, trunk, neck, arms, legs. And she is getting a few more. Some of them really look like light colored freckles.

She also has freckling in the groin area (okay one freckle).

We knew about these two symptoms going in to our appointment today. However, another complication was also confirmed today. That one took my breath away. We noticed some swelling at the nape of her neck just before her two month check up. Of course, we mentioned it to Dr. B. She checked it out and felt that it was just a lymph node. But, it’s gotten a bit larger. How much larger, I’m not sure since we didn’t measure it but it is noticeable that one side of her neck is swollen. The geneticist confirmed that there is a strong possibility that it is a plexiform neurofibroma. Because the neurofibroma appears to be growing, we have requested an MRI to rule out any complications from it. That will happen some time this month.

Right now, Emmie is growing and developing right on track for her age. She is right on the growth curve in all areas. She is hitting all of her milestones full force. And she continues to be a delight (well, when she’s not overtired and screaming), to her brothers, sisters, mommy and daddy. Please don’t pity her. Please don’t pity us. Emmie is a blessing. A gift from God. I could not imagine our family without her. And I am so very grateful that God chose us to be her family. I don’t think any one could love this girl more than her mommy, daddy, brothers, sisters, grandparents and a slew of cousins plus could. So, please no pity. A hug if you see we got a little emotional and are crying. Prayers with and for us are also wonderful blessings. But pity…we just don’t have time for that.

This is getting long. I know I need to end. There is so much to say but yet I don’t want to bore any one. I am keeping a journal. On real pages. In my sloppy ol’ handwriting. And I’ll share more from it and from my heart later (preferably when I’ve had more than a few hours sleep). Please know we feel blessed and know that I can see God’s might caring hand at work now more than I believe I ever have.

June Randomness

Posted on August 6, 2014 by Abbie

Mark requested this for his Father’s Day gift.

That would be Rush Limbaugh’s Two if by Tea. He purchased the original because the peach tea was out of stock. Honestly, it was not the sweet tea we are used to. It was okay but just a tad too much lemon for our taste.

Warm days meant some time to play outside with the family. Malachi’s required “Take a picture me!” shot.

Ace had help washing dishes this nigiht. I love his expression as he played “Bubble Monster” with Malachi.

Josiah’s birthday gift was a fish tank with fish. Malachi loves to watch them swim and swim.

Liam, “Okay, so you know, I told Ben it was okay if he drag me down the stairs.” One epic carpet burn and broken spindle later. Ben was a visiting friend and this occurred one Sunday after church.