Halo Procedure: the Summary

I’m still trying to process this month.  The whole entire month.  I have spent more days away from home this month than I have at home.

I know I have been absent but there has been a lot going on and several things that I probably won’t share for quite awhile.

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Waiting on the versed. That medicine is awesome in soothing her and giving us a few laughs before we had to say “see you soon.”

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I am learning the fine art of glove balloons. They worked this trip!

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Ah, versed! Emmie was relaxed and had to show her grandparents and daddy her belly button.

Emmie went in on August 13th for her halo procedure.  Surgery went smoothly with no complications.  After she went to recovery, they sent her to PICU.  She had to go there because of the sedation meds they kept her on while she was in traction.  We were told to go to PICU waiting room and that we could see her once she was ready.  Mark said we waited ten minutes but it felt like an eternity because we could hear her crying (okay, screaming) while they were getting her settled in.  The charge nurse came out to reassure us and let us know we could cuddle with her in bed.  That soothed my worries about not being able to hold her for three to four days (which actually turned in to more than that).

Once we got to see her, I climbed in to bed with her and grabbed her hands.  She calmed down immediately.  And that’s where Mark or I stayed for the next six days.

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Traction days were long and hard.  I had her during the day and Mark stayed with her at night.  That way, we were able to also divide up time with the other kids.  The time in the hospital was mainly spent soothing her, finding things to entertain her, and scooting her down the bed.

She was on sedation and pain meds.  The sedation meds were mainly to keep her calm not put her to sleep.  The pain meds helped tremendously when she would get another weight (five pounds in the end) added to her traction.

Whenever she was awake, we would get about ten minutes before we would have to call a nurse to hold the weights as we scooted her down the bed.  The weight from the traction and her wiggly self always seemed to find a way to the top of the bed.

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Before ipad contraption…she made do with our Kindle Fire.

By the second day, the nurses and I had decided that the white ceiling was not entertaining enough for a child who was stuck on her back.  We quickly dug through my hospital bag and grabbed the gel clings I had.  While the nurses spotted me, I stuck them up on the light over her bed.  That helped a bit.  By day four, my arms were sore from holding up the Kindle Fire we had brought.  Child Life Specialists came to the rescue with an iPad on a stand that flipped down for her viewing.  That thing saved all of us and for once, I cared not about how much screen time my kid was getting.  We passed the rest of the time with puppet shows, stuffed animal kisses, and bubbles.  If you’re really curious, Emmie’s go to videos on the iPad were videos about dogs with music included.  I think we watched ten hours of 20 Dog Breeds.

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She couldn’t eat while in traction because of the meds and her position but she got lipids and tpn that helped fill in empty calories.

Her PICC line was not successful in going in which meant daily blood draws were done quite painfully and often with two sticks before a good draw was done.

Our most memorable events included the iv.  Her PICC iv was actually used as a peripheral iv.  That just means that it was only used for meds.  It was basically a deep line iv.  I think on Saturday (days ran together), the iv connections snapped.  This was outside her body and caused her no health issues, but it did wake me up and cause a major mess.  Meds leaked all over her and the hospital bed.  It’s not particularly easy to change the sheets of a baby who has three pounds of weight attached to her head.  Our nurses worked for about thirty minutes to figure out exactly what needed to be done.   It took four nurses and me to get the sheets changed.  We also had a bit of help from the valium.  The nurses wanted her to be as comfortable as possible so she got a tad bit of valium to calm her while she was suspended above the bed.  One nurse held the weights.  One held Emmie’s head while another held her body.  That left two of us to quickly take the sheets off the bed and put new ones on.  Teamwork.  Important.

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Totally chilling. She loved crossing her legs and just relaxing.

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Snuggled time with a doggy that made it’s way in to our room.

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She made sure I didn’t go anywhere after Mark went back with the kids.

The other most heartbreaking and painful thing included her iv in her foot.  She had two ivs the PIV and then a standard one.  This helped her get all of her meds and calories from the tpn and lipids.  She started out with the regular iv in her arm but that one came out on Saturday.  So, they had to place one in her foot.  That iv was for her pain and sedation meds.  It worked great.  Until Monday.  As our nurse was finishing up her vitals and heading out, she happened to look at her iv site.  She had already checked it when she came in.  But, thankfully, she looked at it before leaving.  Emmie’s ankle was red, angry looking, swollen.  The iv had come out of her vein.  And gone in to her muscle.  That meant the sedation meds which were on a continuous drip, had gotten in to her muscles.  This could, potentially, cause a pretty serious infection.  Thankfully, after a lot of calls to the pharmacist and doctor, it was determined her sedation meds could also be given intramuscular.  We stopped worrying about a muscular infection, but, unfortunately, her ankle was deeply bruised and sore.  A week later, and she is finally not flinching and screaming when we barely touch it.  I think seeing her poor foot swollen and so hot to the touch was harder than the vest.  By the time this had happened, we knew the halo wasn’t hurting.  We were so grateful, though, for a very attentive nurse.

Emmie did great getting her halo on that Thursday afternoon.  She laughed, smiled, and pinched noses through the whole thing.  There were lots of loud noises and things going on that she couldn’t see.  We were so proud of how brave she was being.  She was helped a long quite a bit by a little bit of ativan.  It definitely calmed her nerves.  After the vest got on, we were working our way out of the PICU and down to a regular room and then out the doors to home.

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Super Sidekick R rocked it getting the brace on. I think we caught Emmie in a blink.

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Almost ready for Mama’s arms.

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A day later and just relaxing with the Graham. Cracker that is.

Nothing made our girl light up like watching her brothers and sisters on skype.  She truly loves her sidekicks and the feeling was definitely mutual.

I’ll share a bit more on her hospitalization over the next few days…what the plan is now, and a few pictures and thoughts on the whole thing.

 

 

Grand Finale

We’ll close up Emmie’s birthday posts with some fun pictures we took a couple of weeks before her birthday.

With surgery looming, we knew we didn’t want to miss out on anything. For the first time, we decided to do a series of pictures for her first birthday.  The result…absolutely adorable.

DSC_1062 DSC_1066 DSC_1067 DSC_1072 DSC_1074 Of course, a few kids needed to photo bomb.DSC_1077 DSC_1080 DSC_1082 This was her first big cupcake.  And she devoured every single part of it!DSC_1086 DSC_1089 DSC_1097 DSC_1101 DSC_1115

Running…

DSC_1054This is a marathon.  This neurofibromatosis journey.  I wish it was a quick fix and easy answer but unfortunately it’s not.  We are slowly coming to terms with the fact that there will be surgeries, MRIs, specialists in our future.  I’m pretty sure we’ll learn all of the roads in downtown Atlanta in a very short time.   We’ll know all the “good” nurses who can get the iv in on a first stick.  All of that.

It’s so easy in today’s society to expect a quick fix.  Easy answer.  When people find out she had surgery to remove “some” of her tumor they automatically assume that everything is good now.  She’s cured.  She’s healed.  Truth is, she’s not.  Genetic disorders just can’t go away with a surgery.  We know looking at the history of her plexiform and looking at the history of plexiforms in a broad scope, that it will grow.  Our prayer is that she grows faster than it but that is something we won’t know.

Sometimes I hate running this journey.  I get angry and frustrated and just want to hit something (wishing we could join a gym for that very purpose). Some days it’s a constant battle and constant reminder that I am not in control. I have to remind myself countless times that God is in control.  I know that He knows what Emmie needs. We know that nothing for our Super Em will happen without Him knowing about it first.  Yes, this is a marathon, but we are so grateful we are not running it alone.  Our God is in the lead and we have some pretty amazing people who are helping us take that next step.  And the next.  And the next.  When we grow weary there are others who are picking us up and running with us.

And sometimes, I don’t even realize we are running this race.  She is laughing and smiling and trying her best to talk.  She loves her cat and dogs with passion and is starting to explore away from me every day.  Then, we get her MRI report and the words are there.  Staring at me.  Taunting me and making sure to remind me that Emmie on the outside is a rockstar but inside, we are waiting and watching very closely.  Severe kyphosis and large plexiform neurofibroma.  A year ago we would have told you those were made up Dr. Seuss type words.  Today, we know better.  Yes, we focus on what a super girl Emmie is, but those words are always in the back of our minds and we know we are just waiting and watching to see.

We actually forget about the brace.  Like the time we were in the hardware store and the cashier asked Mark if there was an accident.  Mark, who was working on paying, was a bit embarrassed because Malachi had an “accident” and he thought the guy could smell it.  He just shrugged it off and said something about it happening sometimes.  He didn’t even think about Emmie in her brace.  Thankfully, we were able to recover and explain her brace!  It’s amazing how, now, that is just a part of Emmie.  It’s what makes her the super hero she is.

As an update, we are on hold for the clinical trial since the plexiform was stable after three months.  So, we’re praying we don’t see Dr. W (as outstanding as he is) until December. And that the plexiform does not cause any issues.

Emmie’s added another running partner.  I  admitted a need for help in getting her closer to independent walking and requested a referral.  She can cruise with the best of them.  She can also let go and walk a good distance.  But she’s missing just a few things.  She can’t stand up without using mama or daddy.  She can’t stand from sitting.  She can’t roll over in her brace (there are screws sticking out and it’s quite painful or her).  And I’m tired, ya’ll.  I needed someone to come along side of us and give us clear guidance on how to get Emmie to be as independent as can be.  So, she had a physical therapy evaluation with an awesome therapist and wonderful long-time family friend.  He did see areas where he could help her.  Help me.  He doesn’t think it will take her long to get going and neither do I.  We just need a little guidance and she needs a good kick in the pants boost in the right direction.

Party On

We celebrated Emmie’s birthday a couple more times with Papa & Grandmere and then with Ge & Granddaddy.  DSC_1531 DSC_1533 DSC_1535 DSC_1536 Malachi was serving us “apples.”DSC_1537 Music and animals are her current loves.  Ge and Granddaddy found the perfect gift that fit both!DSC_1316 DSC_1323 DSC_1325 DSC_1331 DSC_1338 Books and Grandmere just go together.DSC_1350 Grandmere sweetly offered to help make a dress for Emmie.  We were looking for a few that she could wear over her brace and after sending a link, Grandmere came up with a beautiful one!DSC_1351 Emmie approved.

DSC_1356I know I have said multiple times but it is completely true.  This year would have been even harder had we not had these four people walking this road with us too.  They have prayed and cried and dropped everything to do what they could for us and their grandchildren.  I would not trade them for anything!

 

Happy 1st Birthday, Emmie!

Emmie turned one in May!  We thought we had a rough first year with Bryant.  While Emmie’s first year has been full of a lot of shock and awe, we have been able to savor the beautiful moments.  The sweet first smiles and laughs.  The way she dives for me whenever we say “mama’s milk.”  Her resilience and goofiness and her love for animals.  Yes.  It’s been hard.  But it makes her normal babyhood moments just as beautiful.

To celebrate, we knew we needed to invite her people.  Her sidekicks.  So, invite we did.  All told, we had about thirty people come over for ice cream and cake.  She enjoyed the people, a bit.  I think by the time cake time rolled around she was ready fro bed and didn’t want people staring at her enjoying her sugar fest.

We decided to give her the birthday gift from the family before the crowd came.  She was more than happy about that.

DSC_1357 Yes, animals are instant smile hits but splashing water also brings a smile.  A water table was just what she needed!DSC_1360 DSC_1364Bunnies seem to be Emmie’s animal.  She has her Babbit (Shel Silverstein’s Runny Babbit…Such a billy sook to read to your kids!) as her cuddly.  About halfway through her year, we found the book Audrey Bunny from a suggestion in our NF Moms group.  Once I found out what it was about, I ordered it really fast.  It’s a beautiful story about a little girl who chooses a stuffed bunny with spot on it.  She knows the bunny has the spot but the bunny doesn’t realize it and tries to hide it.  In the end, the rabbit realizes the girl loves her spot and all.  It is written by Angie Smith who walked a hard journey with her daughter Audrey Caroline.  As soon as I got the book in the mail, I read it.  In tear.  It is Emmie’s special book.

With all of that going for her, bunnies had to be the chosen theme.

DSC_1381Bunny rear cupcakes for our guests!

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Josiah requested strawberry cake with strawberry cream cheese icing.

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Present time!

DSC_1370I found a tutorial on Pinterest for a fondant bunny.  It was in another language.  Thankfully, there were lots of pictures and google translate almost helped.  I think I did an okay job on it.  I added an “Emmie” touch by putting pink polka dots on the bunny (with enough fondant to make a number 1).DSC_1377
DSC_1410 DSC_1424 DSC_1428 She thought the bunny was cute!DSC_1435 But preferred eating the marshmallow and gum drops to the actual smash cake.  Don’t worry, a few days later we pulled out the smash cake and devoured it!DSC_1437 DSC_1441 But birthday night, she thought it looked better in her hair.

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A Whole Lotta

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.

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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

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 end of day two and finally able to rest.

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.