The Good, The Bad, The Ugly

Emmie had her appointment today with Shriner’s Hospital for a second opinion.  First of all, I have to say that they definitely lived up to their reputation. They were great with Emmie and open and honest with all of us.

Here’s the good, the bad, and the ugly of what we learned.

The Good

The orthopedic doctor fully agreed with the current treatment for Emmie’s scoliosis and the amount of time between appointments.  We don’t want to expose her to any more radiation than is absolutely necessary and there really isn’t much that would change in her course of treatment.  It was great to hear a doctor affirm that she is getting just what she needs at CHOA.

The Bad

We learned today that Emmie is not a good candidate for casting.  In fact,the orthopedic doctor stated simply that this can not happen because of her spinal fusion in her cervical spine.  Casting requires traction which would tax the fusion and would cause severe nerve damage. This is a bad because casting has been found to help greatly in idiopathic scoliosis.   We also got confirmation that because Emmie has NF, her scoliosis is not considered idiopathic.  The research we have done has shown that casting for progressive scoliosis can lead to a great improvement and delay spinal surgery by a lot.  So,no casting removes the only other treatment for progressive scoliosis.

The Ugly

That leads us to “the ugly.”  He basically told us what no one else has…that we are going to be bracing and bracing and bracing until the spine gets bad enough to need surgical intervention (which we hope is years away).  We knew she would need surgery but until we heard a doctor say that, then we could just be in denial.  As I’ve said many times, NF bones are very weird and do not act like normal spines even “normal” scoliosis spines.  Add to that Emmie’s spine history…well, we know the spine isn’t going to correct.  We also know it will get worse.  It’s just a matter of getting  her as close to maturity as possible before we have to do surgical intervention.  So, the brace, as we know, is there to slow the progression of the curve as much as possible.

Like I said, we were grateful for the open honesty the doctor provided and again, the affirmation that she is getting the best care needed.

We’re here again…the ol’ Wait and Watch routine.  We’re adding in prayer as well.  Please join with us in praying that the spine does not progress fast and that we can avoid surgery for years to come.  I hate she has to live in a brace. She’s worn a brace most of her life.  It’s what she knows and it barely phases her.  But it is so hard to watch her deal with these crazy restrictions and challenges that many three year olds never have to deal with. Please continue to pray she can continue tolerating the brace with her dynamite warrior attitude as she has so far!  Please pray for strength as we seek to glorify God through all that our super hero encounters.

As a treat, we bundled up and visited beautiful Falls Park at the Reedy in downtown Greenville.

Curve-ball

It’s about a time for an update.  Emmie had a five month check up for her scoliosis in November. We met with the nurse practitioner at her orthopedic doctor’s office.

The Good New:  Her curve has increased to 29 degrees but is still considered stable since it is still under a degree a month (last measurement was 27 degrees in June).  Basically, we can say the brace is slowing down the curve progression.

The Bad News:  Her spine is leaning significantly more to the left than it was in June.  This is obviously not a good thing.  The nurse practitioner stated that Emmie would need to meet with her orthopedic doctor for the next check.  If the x-ray shows more leaning, then we’ll have to look at a different intervention.  We set her next appointment for five months from November.

A week later, Mark and I were talking. We both realize that NF kids have crazy, weird bones that tend to do their own thing.  We reflected back to Emmie’s second MRI and how her cervical kyphosis came up but was dismissed and only six months later it went from a “possible positioning” to “severe cervical kyphosis.”  We were blindsided and will always wonder if the progression were caught sooner would we have been able to delay the halo even more.

Because of all of that and after consulting our pediatrician, we decided to seek out a second opinion.  We’ll be meeting with a doctor at Shriner’s Hospital this month just to make sure we don’t need to be a bit more aggressive in our treatment.

Like I said earlier, NF bones do their own thing and don’t like to follow standard early onset scoliosis protocol (if there is such a thing).  We know she’ll need stronger interventions for this part of NF.  While we would love to wait as long as possible for those interventions, we know if she needs it now, then so be it. God has shown us over  and over again that He is in control of Emmie’s life (well,all of us,but we can see it more clearly with Emmie).  We trust Him to lead us and the doctors we are meeting with.

 

October Randoms

Welcome home work for Baby Tobin (and Mama)! Zoe had a rough month of testing.  She took the SAT and PSAT for the first time.  We celebrated with our favorite eat out place!  I’m so proud of how hard she is working in her first year of high school. She also got some great blue highlights. Lulu and Tot welcomed Tobin with lots of sniffs and licks and made sure to cuddle up with me to protect us both.
Silas built Tobin his name in legos! Emmie loves her bracelets. Everyone enjoyed visiting Tobin while I recovered. Emmie took a good nap on daddy during church. Tobin’s first family outing.  All twelve ventured to the library.
S’mores night! Pumpkin carving Scary face pancakes at IHOP are free on October 31st.  We love free food.  Especially when you can play with it.

Daddy took the kids and dogs for a walk.

Welcoming Baby Tobin!

Enough with the words!  Time to oohh and aahh over the newest member of the bunch. Ge and Granddaddy were so excited to be able to come down to meet Tobin.  October is a super busy month for them!

I think big sister was super excited to meet her baby brother. The other kiddos were pretty smitten! Grandmere got in some extra cuddles.
Bright eyes.  Tobin has tipped the scales to the blue eyes for the majority…so far.  We are all still thinking that they’ll be more hazel/green in the end, though.Aunt Tracy stopped by after an appointment to check on their baby one day. But also brought the family by to meet Tobin!  Her kids were super excited and are getting so ready to meet their new baby brother or sister. Dr. B, our friend and chiropractor, came by to give Tobin some loving but also to help us get him to wake up to eat (he liked his sleep the first 48 hours). Our wonderful Dr. J who has delivered all nine of our babies!   There are very few things as relaxing as cuddling with a newborn.

Tobin’s Birth Story

How about a birth story to celebrate Thanksgiving?

While Tobin’s birth story isn’t full of all of the uncertainty that our other births came with, it was still very special to us.  When we found out we would be having another c-section (our hospital does not allow for a vbac after two c-sections), I have to admit that I was more than upset about it.  I spent weeks praying and crying and generally frustrated.  My c-sections were not horrible by any means.  However, not only was I going to have to have another c-section but the hospital where I had delivered eight of our babies had been bought by one of the larger hospitals in our area and was no longer doing labor and delivery.  We had no choice in which hospital our insurance would pay to.  The hospital we were to go to is large and probably does the most deliveries in our area.  I just knew that it was going to be impersonal and sterile and by the book “baby factory.”

In the long run, I had to pray a lot.  I knew we were with the doctor we needed to be with.  I had to eventually admit that we were at the hospital God wanted us to be at for delivery and that God was fully in control of this delivery.  I still prayed that God would allow me to go in to labor and we would “sneak” in to the hospital without having to have a c-section (with my history a home birth would not be safe for me).

So, about a month out, we negotiated Tobin’s birth date.  Dr. J was willing to let me go to the week of my due date since I usually don’t go in to labor until after 40 weeks.  I worked hard to get a delivery date after the due date…because, ya’ll don’t laugh…my besties birthday was that week and we agreed to have our babies on each others birthday (as luck would have it, she didn’t deliver her baby on my birthday either).  He wasn’t convinced and was quite surprised that I wanted to actually go past my due date.  So,we set Tobin’s birthday for October 16th.

For us, we prefer our new babies stay with us at all times.  That means we don’t use the nursery for anything more than what is absolutely necessary for medical issues.  We are 100% behind family-centered childbirth and after-care.  From watching friends births, we had not seen this particular hospital be anything but that.

Getting ready to meet Tobin!

We arrived at the hospital bright and early and ready to meet our Tobin and praying for a beautiful positive experience.  Getting prepped for surgery, I was asked if I would be breastfeeding.  I responded, that I would be breastfeeding exclusively.  The nurse asked if we wanted “no separation.”  While I had no clue what that was, it sounded exactly what I wanted and she quickly made note of it.   Another nurse came in and told Mark that he would stay with Tobin the entire time and if they needed to go to PACU, he would not leave him.  She was adamant about that.  I felt like God was giving us a reassurance that we wouldn’t miss a minute of bonding with our little one.  I made sure to tell them that I wanted to see him as soon as I could and I wanted to do skin to skin as soon as possible.  Each time I mentioned it, their response was, “Absolutely!”  They were also very accommodating to my wish for very little narcotics (they make me feel absolutely horrible and I usually go to sleep with them…or throw up.).

After they got me prepped for surgery, Mark came in and sat with me.  When Dr. J was close to delivering Tobin, he told Mark to stand up to see his son be born.  Mark was thrilled to be able to watch! As soon as Tobin was delivered, the nurse brought him over for me to not only see but to touch and love on.  They kept my arms free to move so I could love on him (previous c-sections I had them strapped down and had to ask for them to be freed to reach him).  They took Tobin over to the incubator to do his vitals and make sure he didn’t need any suctioning and then brought him back over to me.  The nurse held him close so I could give him kisses and love and then nicely told me they needed to make sure his grunting was nothing more than that (it was fine..this kid sounds like a pterodactyl all the time!).

Tobin Asher

8 lbs 12 oz

21 inches long

Getting some good Tobin love!

After surgery, they wheeled me to recovery with Tobin and immediately got to hold him for skin to skin.  Ya’ll, if you have a baby, skin to skin is the biggest way to bond with baby and has been such a blessing to do with Emmie and now with Tobin (my only ones to do this with).  Tobin was placed on my chest but when he was placed, he did something I’ve never been able to experience.  He did the breast crawl to nurse!  It was such a beautiful and pretty neat experience!

We continued to have a great hospital stay as Tobin went to the nursery for probably about 30 minutes total (during our entire stay) for weight checks and a blood draw.  They were good with us bathing Tobin as needed or when we felt he needed it and even encourage babies to not be bathed for the first six hours to help keep their body temp up.

Recovery was great.  I didn’t really need any narcotic pain meds excpet for Toradol (which should really be oral instead of just through iv.  That pain med is wonderful).  I advise anyone who goes through a c-section to plan to be in bed for a week doing absolutely nothing but bathing, bathrooming, and feeding and loving on baby.  After a week and with a little bit of compression on my abdomen, I was able to get up and move relatively well.

Tobin means “God is Good” and Asher means “blessing.”  Our Tobin comes after a crazy three years of medical issues with Emmie and an adoption as well as two miscarriages.  One of which was our sweet twins.  Through all of the trials, the joys and the struggles…we have sought to praise God because He has been so good to us and for us.  Tobin is truly a blessing to our family and there is not a day that goes by that we don’t thank God for allowing us to be his parents.

Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change. Of his own will he brought us forth by the word of truth, that we should be a kind of firstfruits of his creatures.James 1: 17-18

 

September Randoms

This girl loves all things furry.  I think Lulu is saying the feeling is mutual. Some school days are normal…and then there are days when I teach a camo boxing clown!

Zoe had remarked to us a time or two that she couldn’t read things far away.  Words on the TV etc were getting hard to read.  So, off to the optometrist we went.  He found that her right eye was great but the left was a little off.  She needed glasses when looking far off.  Even though it is only a little off, she can definitely tell a difference.  Pay no attention to her photobomber in the background…life with brothers. Some days Emmie just needs to nap in a chair with a book about Star Wars.
As I mentioned earlier, Zoe is taking a Greek class.  These are her study notes.  Posted on my kitchen wall.  And her collection is growing. I think it’s pretty cool that she figured out a good way to study! These two boys were less than excited a year ago when we moved them into a room together.  However, this is their nightly bedtime routine now.  They read together until lights out.

Oh, just a normal lazy Sunday afternoon working on our computers…note the teenager in the background using hers too.

If ya’ll know me personally, you know there are two things that gross me out as a parent. Toes and teeth.  Give me a gash that needs staples or stitches.  Show me that bloody scrape but please, for the love of not seeing my last meal, do not make me pull a tooth or show me one hanging on by a thread.  I just can’t handle it.

But, alas, after fourteen years of mama-ing, it happened.  Mark had a meeting to go to and the girls had American Heritage Girls.  I took the crew with me.  As they were playing on the playground, Malachi let out a big cry and came running with a bloody mouth.  My insides started to turn.  Surely, this couldn’t be happening.  But it was!  The tooth that had been threatening to come out had to come out.  It was just dangling there.  He wouldn’t touch it.  I sucked it up….held my breath and pulled.  Out it came just as I started to gag.  Thankfully, I did not lose my supper. Mark ventured out with Ceili Rain to see a ballet production of Beauty and the Beast.  It was a last minute date night but definitely worth it.  She had a wonderful time and even Mark said the ballet was amazing. I have wanted to do an escape room group date with friends for a long time.  We grabbed up a groupon for one and let it sit for several months before we realized it was going to expire around the time Tobin was going to be born.   So we made plans to go and grabbed up some friends.  We had space for two more and a walk in couple joined our group too.  It was definitely fun!  We escaped with six minutes to spare and a little help from the referee/overseer/whatever.  I can’t wait to go again.
There is one thing I have craved this whole pregnancy…ice cream cones.  This one…did not meet my expectations, but it was still good.

Some days it’s hard being a dog in this house and you just pass out with your tongue hanging out.  For real Tot, we feel ya.

NF Walk 2017

With this pregnancy and just life happening all around, I haven’t posted much about our NF Walk.  But, regardless, it happened and we all had a blast. Emmie was so excited about the walk that she woke up at 2:30 the morning of, started to get dressed and cried that she was ready to go to the walk when Mark put her back to bed. Ceili Rain continued working on her cake decorating badge by helping with the cake and cupcakes. Ignore my big ol’ pregnancy belly and notice the cool bad/good guys in the background.  These guys were part of the 501st Legion-Georgia Garrison and volunteered their time to dress up in this hot costumes and make all of our kiddos super happy!  They were amazing and we were so excited to have them come…some of them drove up from three hours away to spend the day with us.

Emmie was shy at first and would have nothing to do with them.  She’s more of a clone wars-Ahsoka fan.  But after a while they were able to get her close enough to get a good picture.  During the walk, Mark was holding her when they walked passed the storm troopers and she lifted her head up and shot a quiet “pew” at them and grinned.

Even though the walk is over, we will happily accept donations to our team.  Any and all donations go to Children’s Tumor Foundation which funds research to end neurofibromatosis!  Our team goal is $2500.  We’re over a third of the way there and would love to meet our goal by the end of the year.

Time to Dance

Last year, I started looking for a way to get Emmie moving and active.  She’s shown very minor delays in gross motor skills mainly because of the halo.  Then with the diagnosis of scoliosis, I knew some kind of activity was needed to keep her active and moving.  Gymnastics is out.  Having rods and screws in a toddlers necks and encouraging her to bend on it…too much stress for me and daddy.  So, I looked at ballet and was so excited to stumble across Steps of Grace.  A special ballet class for super awesome kiddos.  The ballet instructor is an occupational therapist AND (which is cool for us) a scoliosis warrior.  She has special helpers all of whom are in school for occupational therapy.  Win-win for us.  We signed her up as soon as it was offered in August. As you can tell, she was only a little excited about this class.

She absolutely loves it.  Her teachers are wonderful and she is usually the first to run into class and greet everyone.  She is a social butterfly and dancing and interacting with others has been perfect for her. We look forward to seeing her grow and blossom through all of this!

Curly Sue

So, Emmie had her first haircut at 21 months old when they had to shave her hair for her spinal fusion surgery.  I realized when we sent her back that day that they would probably have to shave it some.  I wanted to cry but realized how stupid that would be to cry over something so minor compared to what they were going to have to do to her neck.  So, I took a deep breath and carried on.  But the nurses at CHOA are amazing and realized the significance of a first haircut and saved her locks for me.

So, when Irma blew through, I decided to go ahead and give Emmie a little trim.  Her hair grows a bit faster and thicker around her plexiform (tumor) and so, the part that had been shaved over a year ago needed to be evened up.

Ta Da! Not that big of a difference…but it made Mama happy.

So, also in September, I stumbled across some curly hair care products and decided to give them a whirl on Emmie’s hair.  She’s had waves and curls but I confess I had no clue what to do with a three year old curly girl.  I’m only five years in to being a curly girl myself and never thought I would have a curly kid.  I think I’ve finally come to the conclusion that after three years her curls may stick around for some time.

And this is the end result of the products! The product is called Curl Friends.  Our morning routine takes about five minutes to do and is super easy.  I dampen her hair, apply the pomade and then spritz with the texturizing mist.  She also has her hair washed with their shampoo and conditioner a couple of times a week.  It leaves her with soft little girl curly hair and the sides have gone from wavy to significant curls.  She’s still trying to learn not to tug on her hair and doesn’t understand that she doesn’t need to comb or brush it like her sisters.