Tag Archives: Emmie

Super Heroes Unite!

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Super Emmie started her most recent battle getting fueled for the journey to Atlanta.  Krispy Kreme’s Superhero Day.  Donuts energize every time.  Okay, the sugar does.
Then it was off to pre-op.
 Super Emmie surveying the land for evil lurking below.
Ah, all is well with the world.
She did great with pre-op and only had one stick to get a blood draw.  Then it was off to get Greek pizza and a quick view of an art museum before it closed and then we were out for the night.
The next day, bright and early…actually, it was really early and really dark, we made our way to the hospital.
Mark and I both were at peace.  We knew that God was in control and we were trusting Him above all else.  We were constantly getting messages throughout the morning and day with beautiful verses and encouraging words.  It was hard not to feel His presence through one of the hardest things we have ever had to do.
Sock play was a good distraction but didn’t keep her occupied for long.
Before they took her back, they gave her versed to calm her and help her not remember leaving us.
Let’s just say it did the trick.  At one point her neurosurgeon, Dr. C, was talking and Mark was holding her.  She reached over to me and started laughing hard.  Then she started squeezing my nose and laughing.  It was so hard not to laugh while he was talking about the serious stuff.  At another point, she started singing and laughing.  
Soon it was off to surgery and mommy, daddy, grandparents and Zoe all waited.
Surgery took about two hours.  When we went to the consult room to meet with the surgeons, we looked up on the whiteboard and someone had written, 
“You are the God who works wonders;
you have made known your might among the peoples.” Psalm 77:14 
Another reminder that our God was in control.
Dr. C, the neurosurgeon and Dr. R., the general surgeon came in and were very positive.  They were able to get in and do what needed to be done.  Dr. C., feels that he got all of the plexiform neurofibroma that was causing the kyphosis but we’ll know for sure after her MRI in June.  That tumor was about the size of  a grape or walnut but given the size of Emmie, is pretty good size for her age.  Dr. R was able to work at getting some of the plexiform neurofibroma that is in the soft tissue area.  Because that plexiform is not causing any issues, Dr. R didn’t want to risk any damage to the nerves and so, only did very little.
While we waited for Emmie to finish up in recovery so we could get settled in PICU (where we were told we would go), we grabbed a bite to eat.  As we were settling in, to eat we got a call from Recovery.  Emmie was doing so well in recovery, Dr. C saw no need for her to be monitored so closely and would be going to a regular room.
We quickly finished eating and headed to her room as fast as we could.
She had been crying and was sobbing when they brought her in.  I’m pretty certain that was Dr. C’s first clue that she didn’t need extra monitoring.  As soon as they got in the room, she saw me and started crying.  They asked me if she would calm down if I held her….um, yeah.
And mommy’s heart was full.
After getting settled in.  Emmie was able to nurse and get some undisturbed sleep.  
And when supper rolled around, she perked up and stole our fries.
The other neurosurgeon who was also in surgery popped in and said he wouldn’t be surprised if Dr. C would let Emmie go home the next day.  What?!  We were first told 3 to 4 days.  Then two to three and now we were looking at leaving in about 24 hours.  Ah, we were excited but cautiously so.  We knew things could change and a lot needed to happen before we could go home.
Also, the day of surgery brought a new brace.  She had broken the second brace (the first was broken after four weeks…the second only took a week of Super Emmie before breaking).  Dr. C was gracious and didn’t make her wear it right away though.
She had morphine at 2 the day of surgery but after that it was all ibuprofen for pain management and she was tolerating foods so well.  
At some point during the afternoon, while I was holding her, I felt a warm spot on my stomach.  Her catheter had come loose and her diaper leaked a bit on me.  Another step towards going home.
While Mark and I didn’t sleep well as we rocked her and kept our eyes on the monitors, she was relatively comfortable through the night and able to sleep some.
The next morning brought a very happy and very alert Emmie.  

 We were actually having a bit of trouble keeping her occupied and keeping all of her various monitoring cords out of her way.  The neurosurgeon who came in to see her thought she looked great but said Dr. C would be in that afternoon to make the call about when we would leave next.

Eventually, after a bit more play and eating (like a whole pancake and half a banana), she managed to get all of her monitors popped off and her nurse decided to just unhook her.  She told us about the playroom and off we went.  Emmie had a blast before getting sleepy again.  So, back to the room we  went.

Dr. C came in while Mark was getting lunch and Emmie was cruising the room.  He first looked for her in her crib and then started asking where she was.  He was so shocked to see her walking around and smiling.  And he told us outright that he really didn’t see any reason why she couldn’t go home that day.  We agreed!

Orders were put in and Emmie got her final iv dose of antibiotics and we packed up and headed home.

But first…a nap was needed.

(FYI, the right side of her face is a bit swollen but one of the neurosurgeons told us that that can sometimes happen and should be gone in a week or two).
She was so happy to be home and rewarded us with this (36 hours after surgery):
This girl.  She is a fighter.  A super hero.  And she continues to amaze us every day!
God has blessed us with one amazing little girl.  We praise Him for her quick recovery and her fighting spirit.
From what we’ve been told the rest of the kids fared well!  We had some amazing volunteers who willingly gave their time and watched our kids or cooked meals for them (and us).  We received such amazing blessings of gift cards and snacks to prep us for this time!  It was such a blessing and warmed our hearts to know others were thinking of us and willing to help.  Now, when we are home, those blessings are continuing and making it so much easier to relax and enjoy my family and focus on Emmie’s care.  Thank you so much to everyone!

So, what’s next?  Are we done?  Will she have more surgery?  Is the kyphosis corrected?  Stay tuned for another thrilling blog post in the Adventures of Super Emmie and her fight against Neurofibromatosis!

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Reality

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One text from Mark after almost two weeks of trying to pin down a date.  April 29th is confirmed.

And suddenly, what was just a far off something unknown is now a very real, very near present thing about to happen.

A week and a half.

A week and a half until we take another step in our NF journey.  Until we see what so many parents have had to face numerous times and sometimes way more scary.

A week and a half until of being reminded that this beautiful girl is not our own.  That we don’t control her future or her present.

A week and a half and the reminder that only God knows what our daughter needs.  How long she will walk this earth.  That He is in control.  It’s very present and real right now.

And though I can’t control the shaking at times.  I can’t tell my body that everything is going to be alright and I can relax and be calm.  I can rely on my God and know that He alone is in control and He is not only holding Emmie in His hands.  But me.  And our other children.  And my amazing rock of a husband, Mark.

When our kids are born, we give them a verse that is our prayer for their lives.  Emmie’s verses were Matthew 26:6-13 when the woman poured perfume out on Jesus’ feet.  Jesus spoke beautiful words about her saying “Truly, I say to you, wherever the gospel is proclaimed in the whole world, what she has done, will also be told in memory of her.”  We want  Emmie to make an impact for Christ in the world and this was and still is truly our prayer.

However, as we’ve walked this first year with her and learned more about how God has made her unique, we felt the Lord leading us to a more fitting verse to pray over her.

Proverbs 31:25
She is clothed with strength and dignity,
      and she laughs without fear of the future.

If you know our Super Em, you’ll know those verses fit her to a ‘t.’  Our prayer is that she continues to face the future without fear and that her beautiful silly laughter will help us also to face it the same.  Thank you for the prayer and understanding as we take time to spend with our family this next week and a half.

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Emmie is Six Months!

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 Emmie turned six months last month.  It’s safe to say, she’s growing like a weed!  The week we made this picture, we had to pull out her twelve month clothes.  Her torso and the cloth diapers made snapping onesies near to impossible.  So, up a size she went.   She had a great check up with Dr. B.  She’s a bit slower on her milestones than her siblings but she’s still within normal developmental range.  She’s sitting up and grabbing at objects and even manipulating them in her hands.  Bless her, having a mama who is a social worker, and a grandma and aunt who have masters in special education…this baby is being watched like a hawk.

She continues to be a delight to our family.  The kids remind me daily that she is definitely the favorite for them.  All of her adventures these past six months have reminded us to not take a single day for granted.  She is truly a gift.

Here’s her stats:

17 lbs 13.2 oz (84%).  A week after her well check we had to go back in because she was sick (nothing serious…just a normal infant virus), she weighed 19 pounds…over a pound in a week…This kid loves her milk (because she doesn’t eat baby food).
27 inches long (90%)

Miss Ems decided that she wanted to sit up for her photo shoot this month.

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Breathing Easier…

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Mark and I traveled with Emmie to Emory to meet her neurosurgeon Dr. C on October 17th.  Her appointment was in the afternoon, so instead of loading up and staying overnight at Ge & Granddaddy’s house, we were able to arrange childcare (through an awesome babysitter, M, and friend, Kristina) and drive there and back.  Emmie did awesome for being in the car that long!  She has learned to be a great car rider with all our trips.

Driving down we laughed and chatted and enjoyed spending time together while Emmie slept.  But when we got there we both clammed up and tensed up. We honestly had no idea what Dr. C would want to do at this point.  We now had a better view of her plexiform than the first MRI.  We knew he had seen it in their joint conference and in his office.

Dr. C was very kind and basically told us that this was an opportunity for us to meet should we ever need his services.  Because the plexiform is not causing her pain or hindering her development at this time, he did not want to remove it.  He showed us where the plexiform is with the MRI images and showed us what part he would remove which would prevent a lot of nerve damage.  We discussed the different types of plexiforms.  He willingly, and patiently, answered our questions.  The gist is, she won’t have to have surgery unless it is causing her problems.  The plexiform is attached to the nerve that goes to her right arm.  As long as she continues to not have problems with that arm, then surgery is not needed.  He also told us that her case was brought up in joint conference (with all the “neuro” people) because the plexiform is rather large and a more “difficult” case.  He perfectly agreed with Dr. W’s protocol of following up in six months.

Dr. C said that of all the NF patients that are seen there, he operates on a plexiform about once ever two years or so.  He said it’s very seldom that his services are required for NF kids.

I think Mark and I both grew two inches when we left that office.  It really felt like a huge weight had been lifted off of me as we left.  My baby was going to be okay and no need to worry about surgery right now.  We enjoyed the rest of the day with a trip to the farmers’ market and a nice quick meal out before rescuing Kristina!

Thank you to everyone for the prayers!  We have felt them so much.  We are so blessed to have family and friends who willingly and lovingly are walking this journey with us.

I know I have a way to go before I can fully rest in the Lord.  I know He is in control of our precious Emmie but it’s tough letting go and trusting Him it always is.

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Emmie’s Four Months

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 Our big girl is getting bigger.  When I attempted to put her in a 3 to 6 month onesie and couldn’t snap it, I threw in the towel and swapped her clothes out.  My four month old is now sporting 6 to 9 month clothes and rocking them out with her long torso!   Her naps are ever so slowly getting in to a routine.  Of course, our schedules have been all over the place so she hasn’t really had much time at home to settle in to a good nap routine.  We’ll get there one day though.  She had her four month check up and passed it like a champ.  Her development is on target for her age.  Still not rolling consistently but she loves to roll side to side so we are hoping any day now that she’ll start rolling to get from A to B.  Some NF kids tend to have macrocephaly (fancy term for a big head and small body).  However, Emmie is just plain big in general.  Or rather big for an NF baby (they have their own growth chart that the NF clinic uses and she is so big she is off of it) and upper average for all the other folks.

Here’s her stats (stats are based on a normal growth chart):
15 lbs 8 oz (86%)
26″ long (96%)
16 5/8″ head (81%)

I’ve decided to document all that Emmie is going through more for my sake than anything else.  I want to remember both in pictures and in words how God is working in Emmie’s life and in our lives  I debated awhile about doing this but then after talking to another mom who has walked a very similar path, I felt like I needed to make sure I wrote out and took pictures and journaled her life.  I want to share it here because this is the best way for me to record and look back on what our lives have been like.  And, like it or not, NF is now a big part of our lives.

A lot has happened this past month so I thought I would try and get this up to date.  She had her neurologist appointment on September 11th at 7 in the morning.  Do you want to know what big city traffic looks like at 6:45 a.m.?  You don’t.  Trust me.  We thought we wouldn’t have to deal with rush hour that early.  Just believe me when I say we were wrong.

We made it eventually.  Emmie’s neurologist is the first NF neurology specialist at Emory.  We’ve heard nothing but good things about Dr. W and the next time Emmie goes to see him, I’ll try and make sure to get a picture.  He was great with her and she was all smiles with him.  Developmentally, she is on target so the plexiform she has on the back of her neck is not causing any issues right now.  Dr. W laid out some things to look for that might mean action is needed immediately and also discussed our next steps.  One of them was that he needed a better MRI of her cervical spine (the neck) to get good measurements on the plexiform as well as to see if we could track any growth and to know what type of surgeon might need to be consulted.

We asked that a small miracle be performed and for her to be scheduled for the MRI while we were in town (possibly that Friday).  God showed out and we were able to get it done THAT day.  It was a huge blessing and little miss did amazing having to fast during the day.

 Waiting to see Dr. W and enjoying playing on the floor.
 Let the fasting begin!  I look forward to several years from now when all we have to do is show up in the afternoon and she watches a movie while they take the pictures.  But for now…we fast.

 Almost time for the IV stick and she started screaming every time she looked at me.  At that point I was the mean mama denying her what she really, really wanted.  Mark helped her pass the time by playing with her.

Her awesome nurse got in on the distraction by finding a balloon.

Baby veins are so finicky and tiny that getting an IV in is very hard.  This time, it took two sticks.  She cried but calmed down a tad when I started playing hymns from my phone.

I thought that it was tough getting through the first MRI and that subsequent ones would be easier.  I was so wrong.  It was just as tough.  Once we left her asleep, it got a bit easier but around the one hour mark we got very anxious for our baby back.  Not too long after, she appeared and I grabbed her up as fast as I could.

 Mama’s arms and a sweet sleeping baby.  It took her awhile for the meds to wear off but after a good nursing session we headed back to pick up the crew from the grandparents’ house.

 My loopy baby.
By the time we got back to our house, she was all smiles and back to her fun self.

The MRI showed extremely little growth from what they could tell comparing the August MRI.  Dr. W suggested a six month repeat MRI and appointment with him.  It also appears that the plexiform is growing out at the neck and not around the spinal cord.  This is extremely good news!

However, since it is easier to remove most of the plexiforms when they are smaller, we will be consulting with a neurosurgeon to get his recommendations.  We had read that when a plexiform is removed it will grow back faster and bigger.  This is not true according to Dr. W.   Each plexiform neurofibroma will grow at its own rate and will typically follow a curve upward.  That means that whether you remove some or none it will continue to grow how it will continue to grow.  We are content with waiting until after her six month check up to remove what we can.  She’ll be older, bigger, stronger at that time.  This is all new territory for us, so for now, we won’t be able to make any decisions until she is seen by a neurosurgeon and we have prayed about it.

Prayer Request:

1.  That the tumor will continue to grow out at the neck and not around the spinal cord area.
2.  For an appointment soon with the neurosurgeon
3.  Wisdom as we weigh the risks and benefits of any and all procedures for Emmie’s care.
4.  Strength to see God’s hand in all of this.

This is already so long.  I really want to share my heart but feel it might need to wait for it’s own post.  We ache and our heart breaks for all Emmie is dealing with at this time.  And some days the struggle is really hard.  The past two weeks have been “normal” weeks of school and church and playing with neighbors and friends.  I have soaked up every second of it.  That’s enough for now.  I promise I will share more later.

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Welcoming Emmie

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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

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What we know

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-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.

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On Our Toes

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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.

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Emmie’s Cuteness in June

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Just because I know there are grandparents who can’t get enough pictures of their grandkids.

Zoe has really enjoyed loving on baby sister. 

Miss J.  Future Cubbies teacher and expert baby holder! 
 Ace was so excited that he got her to sleep.
 Neighbor play date. L. is exactly a month older that Emmie.
I surrender!

I’m thinking.  I’m thinking.

Quick! Get pictures of her in smocked dresses before she outgrows them!

 Malachi:  Take picture me and Emmie.
 Trying to catch those first smiles…

She was quite amused at our efforts.
 Milk coma!
 Malachi says,”Emmie wants to see me.  I love Emmie.”  She is  now the first one to get his cuddles in the morning and the only one who gets his goodnight hugs.  I’m almost jealous.

The changing table is the best place to get some rockin’ smiles.
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Two Months

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Emmie turned two months this past weekend and we celebrated with a trip to the pool and a date night.  Then the next day we did this:

 She’s just playing possum.  Ya’ll don’t be fooled in to thinking she is actually asleep during the day.
 “Ha!  You really think I’m going to smile?!”
 “Alright, maybe a little teaser.”
“Ta da!  Satisfied now?!”
Our Emmie is growing and growing and getting smothered with love.  Seriously, I have to fight to get her to look at me because there are seven other little people who are trying to get her to smile.  I have never seen so much love poured out from siblings on to their little sibling.  It just melts this mama’s heart.  Of course, we all dearly love this little girl and I could not imagine our family without her.
She is obviously smiling now as seen by the evidence above.  She also sleeps anywhere from five or more hours a night.  Day time is usually short spurts on mama or in her crib.
Here’s her stats:
13 lbs 3.6 oz (95%)
24 inches tall (95%)
15 7/8 head (85%)
Dr. B noted that she is actually tracking on  the curve as opposed to above it.  Still.  If you are wondering where she falls compared to her brothers and sisters, she’s right in their with the rest.  She’s not the heaviest or tallest.
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