Just a Bunch of Characters: Emmie

Showing posts with label Emmie. Show all posts

I Know a Fighter

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.

To the Bat Cave!

What a day Emmie had on Friday! A super hero's work is never done and she proved that.

First of all, we noticed on Monday, not even two weeks post-surgery, that her new brace (she had been wearing it about a week) was breaking again at the same place the other two broke. I emailed her neurosurgeon to let them know and then also scheduled an appointment with orthotics for Friday. Emmie already had a post-op appointment with the neurosurgeon. Why not add another?

Meanwhile, I heard back from Dr. C, the neurosurgeon, and they wanted her to have an x-ray on Friday before her appointment. We were told by his staff this was to see if her spine was stable enough to go without the brace. However, that wasn't entirely true. I'll get to that.

Zoe had an awards night with American Heritage Girls on Thursday night so we opted for an early leave time on Friday. We left our house at 6. In the morning. Dropped the kids off at Ge and Granddaddy's by 9 and headed to Emmie's appointments.

First up was x-ray. We have yet to figure out how to explain to a baby that she isn't get an owie when the x-rays are at the same place as the MRIs. One day we'll just be able to tell her and she'll believe us.

After that was done, we headed to Dr. C's office. Dr. C was very happy with how she was doing post-op. He showed us the x-rays from March and then from today and we could see a bit of improvement. Obviously, the spine was not the shape we wanted it to be and I don't believe Dr. C was expecting it to be. He is using the x-ray from today as a baseline. She'll have another done in three to six months (We'll try and coordinate it with her MRI schedule). At that time, we have three options:
1. Spine has shown significant improvement in bend-This would mean Emmie won a trial period without the brace.
2. Spine has shown no improvement or worsening-This would mean that the brace is working and she'll need to continue wearing it.
3. Spinal bend has worsened-We're not sure in detail what this would mean and honestly I don't really want to know but he repeatedly said "invasive action."

I would much prefer number 1 or even number 2 to number 3.

He looked at her broken brace and shrugged perplexed. He said he has never had a child break that kind of brace. Ever. One of Emmie's super powers have been revealed.

We also discussed her eye. Her right eye is still a bit droopy and she doesn't open it too wide. We thought, at first, that it could just be swelling but after two weeks it has not gone down and should have shown some improvement. Before her appointment, I scheduled an appointment for her to see her ophthalmologist to rule out nerve damage. Dr. C agreed with that and expressed willingness to cooperate with her eye doctor should they need information from him.

With that, we hopefully, said good bye to Dr. C for a good long while. Dr. W will be our go to neuro guy (he is the neurologist if I haven't lost you with all these doctors yet).

A quick bite to lunch, a power nap, and off to the bat cave to modify her brace.

I had my qualms. I just knew that the orthotics would shake their heads and either give us another one just like what she had. Instead, she was just like M in James Bond. She looked at, discussed, deduced what the problem could be. After spending awhile with us, she headed to her secret lab to work on the problem.

We waited.

Eye pokes help pass the time.

And waited.

And waited some more.

Genius takes time people.

Finally M returned (okay her real initial is L but we're going with a super hero/James Bond theme here, bear with me) and brought us the new and improved brace.

She added a front hard plastic piece and two "buttons" or "screws" on the side.
If she breaks this thing, I may lose it.

M (or L) thought the main issue was that the kyphosis is causing the weight of her head to push forward which is putting more stress on the front of the brace. Basically, it's not that these braces are poorly made but that they are not designed to help kyphosis. But M made it happen, ya'll.

I wish we had more concrete answers. A more definitive timeline of the future. But Emmie. Well, those who know her personally, this will come as no surprise. Emmie is a special case. Not many one year olds have cervical kyphosis and NF. We're all walking new territory so no one can really tell us what is going to work and isn't and for how long or not.

Once again, we have no other choice but to trust God and wait for Him to reveal what our next Super Ems adventure will be.

I Know a Fighter

I've been sharing on our Just a Bunch of Characters Facebook page about NF Awareness Month.

See, I get the fun and silly posts on Facebook about pretending to be a slug and all to raise awareness for Breast Cancer even though Breast Cancer Awareness Month is in October and I'm quite certain it is very well known. I totally agree that we need to spread awareness for it and we have dear friends who have been directly effected by it but I also know that NF is very prevalent and doesn't get as much publicity. So, this is my publicity for it. Minus the slug posts.

Wow, that was a noodle. Sorry.

Back to what I was saying. This month is Neurofibromatosis Awareness Month. The theme Children's Tumor Foundation has chosen is, "I Know a Fighter." Each day this month, I've posted an NF fact and shared a short bio as well as a picture of some pretty awesome and amazing and beautiful NF fighters. You can go check it out now. Don't worry. This post will be here when you get back.

May 17th is National Neurofibromatosis Awareness Day. That's seven days away. I would love it if you, my dear friends and family would share our NF part of the blog. Or our Facebook page. Or even Super Ems picture (found below)!

Please remember to share a link to our blog or to Children's Tumor Foundation or both when you share!

NF Fighter Update #2

What next?

Well, that's a good question.

First of all, Emmie will have a post-op follow up appointment. At that appointment, we'll discuss when her next x-ray and other monitoring tests are. We already know that she'll have her MRI in June as originally planned. This MRI will really show whether the tumor that was in the bend of the spine is gone. She will probably also have an x-ray then too.

Until June, at least, she'll be in another brace. As I mentioned in the previous post, this is the third brace she has had. The first two were cervical collars. She broke the first one at four weeks and the second broke at a week. Dr. C wanted her in a more rigid collar so she is now wearing what is called the minerva collar (yes, because of the Greek mythology). We're all hopeful this collar will actually last.

When we showed the neurosurgeons what her collar looked like they all said, "Huh, never seen that before." Yep, that's our girl.

Emmie is a very unique case because typically plexiforms will push the soft organs/tissue first. For some reason, that hasn't happened and it's her spine that is being pushed around. Not only that, this is the youngest child that several of the specialists have seen dealing with a plexiform and kyphosis.

Dr. C mentioned that he hopes these collars will buy us two years before surgery will need to be done to correct the kyphosis. As I've mentioned earlier, she is so young that her bones are still so soft and any type of rod placement at this age would just not be successful. The older she is the more successful surgery will be.

And, there is always the possibility that the tumors continue to grow and cause issues. That is something we just don't know and can't predict.

It looks like we'll just be living and planning from MRI to MRI right now.

We are praying for no tumor growth and an improved kyphosis in June. From there...who knows?!

Saturday was the first day with the new collar. They had to go up in size on the neck piece because they don't make the minerva part to fit the triple 0 size she had. This collar is going to take some getting used to on everyone's part. We had to change her wardrobe to just onesies or larger clothes that fit over it (layers won't happen much in the summer). I made her a couple of dresses to go over the brace for church and wear around. I also am making up some bloomers to wear the onesies so she can still be a unique fashionista in her own toddler way. I'm so very glad that I can sew and that I have a plethora of scrap fabric to do these quick sew projects. Now we're just trying to figure out how to make the brace more comfortable for us when we carry her! We'll figure it out. We'll adjust. And we'll carry on. By God's strength, that's what we do around here.

Super Heroes Unite!

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!

Reality

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.

Emmie is Six Months!

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.

Breathing Easier...

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.

Emmie's Four Months

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.

Welcoming Emmie

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.