A Whole Lotta

Posted on June 7, 2015 by Abbie

Coming at you is an update on our Super Emmie. But first, you may want to get comfy. Grab a coffee or tea. Settle in. This is a long one.

Go ahead. I’ll wait. Comfy? Let’s get started…

Over the course of two days Emmie had an ophthalmology, neurology and orthotics appointments. She also had an MRI and travelled three hours to her grandparents. Then we travelled an hour both ways to her Atlanta appointments. To say she was a trooper is putting it mildly. By the last appointment on day two she was done though. Thankfully, her neurologist understood completely.

The more vocal and animated she gets, the more we get to laugh at her loopiness after MRIs. At least she wakes up happy.

1. Feet: We noticed this past weekend when Emmie was cruising that her right toes are turning in. After consulting with Dr. B, her pediatrician, we think it is metatarsus tarvus (adductus). We’re doing stretching exercises right now and will re-evaluate in three to five weeks.

2. Weight: Emmie lost weight from April to May. We’re not sure why. She also lost weight from May to this week. We know that could have been from the stomach bug she had the week before. We are going to be keeping a food journal this next week or so. We are also going to try some things to increase her calorie intake.

3. Horner Syndrome: Emmie‘s wonderful ophthalmologist confirmed that she is suffering from nerve damage due to the surgery. The nerve damage is called Horner syndrome and is a fancy way of saying droopy eyelid, slightly smaller pupil, and not sweating on the right side of the head. It could very well get better but this is a watch and wait scenario. So far, she is not having any problems with vision. She’ll see the ophthalmologist in six months.

4. Bracing: We are now on brace #5. The orthotist (we found out her title), Super Sidekick L, has been great to work with and has sought to think outside of the box to make Emmie‘s brace durable. She brought out another brace last week and told us it was actually the minerva device she was supposed to have. We tried it on but it is too big. The true minerva brace is a very hard plastic and all metal neck/chin frame. Leigh recognized that her current brace is not going to work long term. She said if it was a temporary one or two month thing we could get away with it. But since this is going to be long term, she wants to make something more durable. What she wants to do is take a brace that is similar to what children wear for scoliosis and attach the minerva extension to that brace. She has to have a new prescription for that so we talked to her neurologist and are awaiting his answer. Please pray that we get one soon. The new brace will make all of our lives so much easier.

Waiting on Super Sidekick L

5. Neurology: MRI shows that surgery removed 20% of the plexiform neurofibroma (tumor) that is in her neck. We know Dr. C, neurosurgeon said that he got 100% but Dr. W interpreted that to mean he got 100% of what he was going for. The MRI showed marked improvement in her windpipe area after surgery which was great to see. Dr. W also told us that they are very much aware that the bracing is temporary and that the only fix for her kyphosis will be surgery. He said that he felt like her kyphosis is caused by two things: the plexiform moving and pushing things and the tendency for NF kids to have more movable spines (more susceptible to kyphosis and scoliosis). They are really, really hoping the bracing prevents any need for surgery for at least two years. Obviously, if it lasts longer, then that is wonderful! We’ll keep going as long as we need to to get her as old as she can be for surgery. Dr. W is also looking into clinical trials. They (NF researchers/professionals) are discussing (this weekend in fact) opening up the trials to younger children. Dr. W does have one trial drug in mind with hopes that it will attack the plexiform and give more growing room for the spine. There are a lot of things to consider and discuss both for us and Dr. W. We should hear from him in a couple of weeks to know what he is thinking and we’ll go from there. Next MRI will be in six months.

These past two days have confirmed that God has placed us in a great place for Emmie to receive the best care from some of the nation’s top NF doctors. We are still in awe that Emmie is treated by one of the best NF neurologists in the country and he does everything he can to make her laugh and smile even after a very long day. Emmie‘s got a lot going on but we know the Lord is so much bigger than all of her stuff.

The end of day two and finally able to rest.

The Peanut Farmer

Posted on May 29, 2015 by Abbie

Emmie’s first brace destruction warranted a trip to orthotics two hours away. I knew that a fifteen minute appointment with eight children meant we needed to find something else to do while we were there. After a quick search the day before, we landed on the Jimmy Carter Presidential Library and Museum.

It was a pleasant and educational surprise in the heart of Atlanta. If you have a couple of hours to kill, I would definitely recommend visiting this museum and library.

One of the many gifts President Carter received after the Camp David Accords.

Presidential campaign paraphernalia. I just thought this one was quite funny.

One of my favorite parts of the museum. A replica of his Oval Office.

With a Bible on the desk.

The ceiling of the Oval Office.

This was at the end of the museum. A pretty amazing portrait of President Carter and all of his accomplishments while in office.

The highlight for the kids. Airplane seats.

The closest I’ll ever come to a Nobel Peace Prize. Pretty cool.

Zoe and I enjoyed seeing the replicas of President and Mrs. Carter’s wedding clothes.

Not only was the museum interesting, we also enjoyed the scenery around it.

We rounded out the trip with the orthotics appointment and Emmie’s second brace. We spent less than five minutes to get it. As we were gathering to leave, they came in and told us to head to an inner room because of a tornado warning.

They found something to pass their time though.

New Baby Jerni!

Posted on May 28, 2015 by Abbie

My bestie Tracy had her baby in April. I was supposed to doula again.

I missed the birth by ten minutes.

Tracy came over the night before because she was overdue and we were both overdue for some visiting. She was contracting but talking and laughing in between and through them so we didn’t time anything and enjoyed our visit and homemade mocha frappucinos that Mark made us.

She left the house about 10:30. I went to bed and woke up to the phone ringing at 1 and her telling me they were getting ready to go to the hospital. I told her I would nurse Emmie and then be right over or meet them there.

Twenty minutes later, I put Emmie down and went to get dressed. The phone rang and it was Tracy’s husband, Kevin. He told me the baby was coming and he had called the ambulance. I just knew he was telling me a story. His urgency made me realize real fast that he wasn’t. I finished getting dressed, kissed Mark and ran out the door.

But I was too late. Kevin had delivered the baby just before the ambulance arrived.

I went from being the labor doula to the postpartum doula. I have been so blessed that Kevin and Tracy have allowed me to be a part of each of their labors in some pretty unique and, this time, unforgettable, ways!

Two weeks after Jerni made her memorable entrance, the crew got to meet her.

Emmie was thrilled at meeting her first baby.

As always, Uncle Mark was smitten.

On the Mount

Posted on May 27, 2015 by Abbie

This is how our trip idea went down…
Emmie’s having surgery.
We need to have some family time.
Emmie’s been to the ocean.
Let’s go to the mountains.

So, in less than three weeks we planned a very quick mountain getaway.

Our kids are pretty incredible. They are almost always up for an adventure. We found a “mountain retreat” called Enota in the North Georgia mountains near Helen. They have cabins, camping sites, and goats (okay, other animals too).

The Saturday morning we were there, a foal, had been born to this pony. Such a sweet sight to see this mama and new baby!

Oh, and hiking trails, a small playground (with some awesome in ground trampolines), and a couple of waterfalls.

We would not have been able to hike over 7 miles in one day if we didn’t have this baby carrier and the backpack that Mark used to carry Emmie!

We were only able to find one waterfall but it was a fun challenging hike after all the rain the night before.

Liam found a fairy cave!

King Bryant of the Mountain

I love that when we pulled up in to check in, they all got so excited (and had not even seen the playground or trampolines). We climbed out of the van in the pouring rain and they were so excited to see our rustic cabin and just the general area. They didn’t have to have attractions or “things to do.” Yes, they would have enjoyed that too. But, they love to explore and learn and go on adventures. This weekend trip definitely provided that.

Brasstown Bald-the highest point in Georgia and absolutely breathtaking.

I would suggest going to Brasstown when the rhodendrums are in bloom. They are naturally occurring and everywhere!

They have a little museum at the top of the bald and a train that Josiah just had to get a picture with.

A sweet family offered to take our family’s picture.

But the grandmom had to get a picture with Malachi first. He was thrilled. Can’t you tell?

We road a shuttle up to the top off the bald but decided to walk down the .6 of a mile. And found places to climb.

Park Fun

Posted on May 26, 2015 by Abbie

Park day turned in to Emmie’s first time at the splash pad. Mama was totally unprepared but sometimes you have to live in the moment.

And those smiles say it was totally worth it!

Josiah was my photographer for most of these. And for most of the others too.

Going on an Egg Hunt

Posted on May 25, 2015 by Abbie

This year is a delayed year…but at least we are doing things, right?! Thus, our delayed egg hunt. The kids could have cared less when we did it. As long as we did it.

Better late than never.

Emmie, obviously, enjoyed being outside more than looking for eggs.

#15

Posted on May 20, 2015 by Abbie

Mark beat me to Facebook so I’m just going to share here!

Fifteen years ago today, I walked down the aisle and pledged always and forever to the man God intended me to spend the rest of my life with. My love. My best friend. My team mate.

We said no matter what we would stay together. We were young, indeed. And yes, very naive (just drive by our first home together…It’s amazing we came out of there alive). I wouldn’t trade those young naive years for anything in the world. We learned so much those first few years.

And each year has brought different challenges. Different ways that the Lord has brought us closer to Him and to each other.

This year has not been an exception. We have learned to lean on each other in ways I would never imagine we could or have. We are learning more and more how to better communicate in hard situations. And the joyous situations have brought us more joy than I could ever imagine.

We have definitely learned, this year, how precious each and every sweet laughter and deep exhale is.

I could not imagine walking this special needs journey without Mark.

I could not imagine walking these past fifteen years without his caring, compassionate and patient (long suffering comes to mind when we think about my crazy emotional self) love. He reminds me so much of the Lord’s agape love for us.

So, Happy Anniversary to my knight! I am so blessed to have you!

Happy Resurrection Day!

Posted on May 19, 2015 by Abbie

This was our first official Easter at our church’s new property. While it was super chilly, we all enjoyed the fellowship and the worship of our risen Savior!

Well, these are the hot cross buns Zoe made. We always have an amazing breakfast that a family from our church provides and these were supposed to have been eaten on Good Friday (just as tradition) but Zoe didn’t get to them until Friday evening so we had them Saturday. They were still very good.

Pastor B sharing God’s Word!

Everyone gathered in the youth room for payer before breakfast. One year, I’ll remember to take pictures of the feast. It is so good ya’ll. We are so blessed that their ministry is to serve some awesome breakfast foods!

After worship, an impromptu gathering to sing more praises to God.

Zoe and friend. Zoe made her skirt. Thankfully, it warmed up quickly.

I made Ceili Rain and Emmie’s dress. We had to go with a quick pattern because mommy let the day creep up on me.

It was a beautiful day spent with some pretty awesome family and church family.

March Randoms

Posted on May 19, 2015 by Abbie

Be prepared for picture overload! These kids are too cute not to share.

Emmie actually sat with Granddaddy…okay, so he bribed her with animal crackers.

Papa visits. Games come out.

We ordered from Lowe’s website and the things we ordered came in these really cool boxes that could be converted in to a house. That house was well played in for over a month. Emmie enjoyed peek-a-boo in it.

Selfies with dad…and a photobomb.

Raising NF Awareness in the cutest way possible.

Beautiful weather meant lunch outside.

Zoe braces, before.

Zoe braces, after.

Emmie loves the mirror at Dr. B’s office.

That baby is too cute.

Malachi showing off his birthday gifts.

It’s a beard.

Yummy food. Goofy faces.

Every time I look at this picture it just cracks me up.

Emmie decided not to eat the chicken nuggets I had given her and just went for the full on sandwich.

This is our pastor. For the past two years he has been Liam’s listener for Awana. That means he listens to Liam recite the verses he has memorized the previous week. When Liam has a rough night and can’t focus, Pastor B understands and has been a great encourager. I just love this picture. They work so well together and totally get each other.

Ge and Granddaddy sent these inflatable hammers. They were a big hit (haha. Pun intended).

Twinsies!

Ceili Rain’s first pedicure.

I Know a Fighter

Posted on May 17, 2015 by Abbie

First, there’s this (which I sang for days coming up to Emmie’s surgery and days after).

Today is Neurofibromatosis Awareness Day!

It’s almost been a year of living with NF. A year ago today, I was at home cuddling up and getting to know this little one who had shared my body for over nine months. I knew every inch of her by this time last year. I knew her tiny little fingers. I knew her sweet cries of hunger. I knew her grunts and her toes. Just six weeks later, we got to know more about how God had made her special.

A year ago on June 29th, I’ll never forget. Casually getting on to Google and researching the funny names of those little spots I had started to notice on her body. That was a year ago. But it seems like yesterday.

I’ve heard several special needs moms who have talked about holding their breath or trying to remember to breathe. Well, this past year has been a lot of breath holding and just trying to figure out how to breath. A lot.

First MRI, and Mark and I felt like we were forcing ourselves to breath while she was gone but knowing we took in God’s sweet air when she was returned. MRI report. “It’s really close to her spine.” “No compression yet.” “We need a better view.” Exhale.

Second MRI. More breath holding. And then the report. “No compression confirmed.” “We’ll monitor.” “Oh the kyphosis could just be positioning.” “Watch and wait.” Exhale.

Third MRI. More breath holding. We learned that it doesn’t get easier. Especially when your nine month old is burying her face in your chest while they try desperately to get a good vein. And then the report. “Kyphosis is bad.” “We’ll have to do more.” “Surgery.”

That last time took longer for us to exhale. Several times I had to remind myself to just breath. With each exhale a prayer went up to our God. I remember Mark one evening, too overcome with tears to pray and all I could think was “the Holy Spirit intervenes when we can’t.”

While we have had a lot of times where we had to remember to breathe, I would say more often than not we have enjoyed the sweet, sweet gift of our baby. Soaking in every bit of what we know all too well is fleeting babyhood. Sibling hugs, first smiles, first laughs, bouncing to music, joy in animals, sleepless nights of baby cuddles, splashing in the bath, soaking in the ocean, the sun, clapping, blowing kisses.

Today, I asked Emmie if she was ready for mommy’s milk. She stopped what she was doing and wanted me to hold her immediately and she reached for our spot. She has done this for the past twelve months without fail. I’ve rocked and nursed and cuddled our beautiful girl. It’s my prayer chair too, I guess. As I rocked and nursed and cuddled and prayed. Tears at times. Smiles and joy at others. Always lifting up our gift to the Lord. We would remember others who were walking a similar journey or one even harder.

Walking this year has taught us so much. We know now more than ever that each our children has been entrusted to us to raise for God’s glory. We’ve realized that we have no control over our children but we have rested quite peacefully in knowing who is in control. Trusting our Savior with our child, really all of our children, daily. We know that He knows the future for them all.

I rejoice in my Lord that not one tear, not one laughter has been overlooked by our Lord. That He knows each breath she takes and each one we hold as we await the next report or the next step.

Want to read more about Emmie’s NF journey, start here.

Please share, pray, and spread awareness so that more research can be done to help fight NF!

And visit Children’s Tumor Foundation to learn more about NF and how you can help.

Just a Bunch of Characters

Musings of everyday life in a house full of Characters.

Author Archives: Abbie