November Randoms

So, November’s random pictures are pretty much all with Tobin in them.  With a few exceptions.  Maybe I should call this one November Tobins.  Yes.  We’re all in love. Daddy cuddles are the best. This was our Tobin at 2 weeks.  No.  Joke.   The boys love to play in the volleyball pit when they have to wait on the girls at American Heritage Girls. It took Malachi over a week, but he finally agreed to hold Tobin.  He was very nervous about holding him this time.

Baby wearing…another M.I.T. (Mama In Training) Be still my heart.
He outgrew his co-sleeper after a couple of weeks. Napping is such hard work. Emmie and Ace enjoyed some special one on one time on our trip to Atlanta. Look!  Tobin finally got hair! Milk drunk.  After a good nursing, he is comatose for about five minutes.

Zoe, Ace, and Emmie were playing pretend and I caught them.  They refused a video though.

Snapshot

Our annual family pictures happened late this year.  I wanted to make sure we got Tobin in them.  Our photographer this year was a friend, Madeline, from Shot in the Moment Photography.  She was incredibly patient and the kids were incredibly cooperative.  All that to mean we had some pretty incredible pictures.

Tip Toes

Emmie is taking ballet this year.  Not just any ballet.  Her teacher is an occupational therapist and scoliosis warrior.  It’s an amazing class designed to include special needs kiddos.  We got to enjoy observing her class in November.
Showing off her new ballet shirt. She runs in to each class and is always willing to engage her teachers and helpers.  In short, Emmie loves it!  Watching her dance, we could see such joy.  This class has been a blessing to all of us.

Forty

November brought my fortieth birthday.  I guess I shouldn’t say that…curl up in a ball…cry giant tears.  Whatever!  I have no shame in getting older.  I think I’ve lived a good life.  Not really one I was planning but way better.

Mark did an amazing job making sure the day was special.

Like conspiring with one of my besties who lives in Pennsylvania for her to drive all the way down here.And then sending me out with both of my besties for breakfast.  These two women are my nursing home conspirators.   You know…the women who are going to put up with me until I’m old and gray and we’re rocking on the front porch reminding each other who we are.   He had the kids prep and make cards for me. And a giant spread of lunch goodies. Friends stopped by to make goofy faces and eat with us. And my parents came up.  Sure, they came for me…but honestly, they came to love on the baby. I got some Tobin loving too. I even got a wished for bike shirt ordered from Children’s Tumor Foundation.
Tobin wasn’t too sure what to think about Granddaddy. After a trip to Emmie’s ballet, we rushed the kids home for Mark and I to go out to eat at The Chophouse.
I got to celebrate my birthday throughout the week while Kristina visited with us. And then we all went to see Wonder based on the book by R.J. Palacio.  It was amazing and a wonderful end to celebrating another decade.

Welcoming Tobin

We have been blessed to be members of church family that celebrates every baby that comes in to our church.  Tobin was no exception.  The ladies in our church put together a beautiful shower to celebrate Tobin’s birth.
Fun games Sweet gifts Absolutely adorable decorations And, our church is never hurting for some good food.  This was the best carrot cake I’ve ever had. Tobin loved getting cuddles from everyone…including G. Baby pants…always adorable. The girls had fun playing dressup with the tissue paper.

The women gifted Tobin a Bible and highlighted special verses in it. I  can not wait to give this beautiful memory to him.

Down on the Farm

We enjoyed a trip to a local dairy farm which also happens to be a corn maze and a lot of other things like… A cornbox (sandbox)… Water trough play area… A giant sand pile… play areas… And a corn maze! The littles (with mom and dad) beat the bigs through the maze! Also, the dairy had fun train rides and pony rides. Some great archery experts gave us all excellent pointers.
Even I got a bullseye! And Emmie had a blast.

Tobin is Two Months!

In some ways, I can’t believe Tobin is already two months…but ya’ll…in others I can totally believe it.  Over the past week, he’s started tolerating being put down, but for a long time he was very cranky during the day.  We knew our streak of chilled babies wouldn’t last.  It’s not a big deal.  He loves people and is very energetic and he easily hands out smiles like it’s no one’s business.  He also sleeps through the night anywhere from five to seven hours!  So, while he may be a high energy daytime baby, he gives us some good breaks at night.

At two months, he makes great eye contact, can track objects (if he wants to) and loves the fan and lights.  He also loves his siblings.  Lately, Tot the Dog has been catching his attention and Tobin thinks he is hilarious.  He’s started giving little belly laughs, too.  He also enjoys chewing on his fist.  Thankfully, no real signs of teeth yet!

Two month stats:  14 lbs 12.2 oz, 23 3/4 inches long.

I know ya’ll think he’s a chunker and he looks like it.  However, we looked back at the other kids.  He comes in about an ounce smaller than Ace and Josiah at two months.  They were also an inch or more taller than him.  He does have linebacker shoulders and an adorable muffin top with little rolls on his legs.  

I love that he doesn’t just smile with his mouth.  When he grins, his whole face just lights up.

His two month check up was bittersweet.  I remember, and probably always will, walking into Emmie’s two month check up and hearing a medical professional say Neurofibromatosis.  To walk in with Tobin and have a perfectly “boring” well-check, was great but also a big reminder of how far we have come with our super Ems.

I know people have wondered if Tobin could have NF.  Of course we wondered too.  When he was born, my first question was not if he had ten fingers and toes, but if he had cafe au lait spots.  For the curious, no.  He doesn’t have a single one.  Tobin does not have NF.  Emmie’s NF is spontaneous which means that neither Mark nor I have it (if we did, we would definitely have more than one child with NF).  So, the chances of Tobin being born with it are still one in 3,000 like every other baby without it in their family.

As with all of the other kiddos, we are so grateful that we have our beautiful baby boy!  He is a blessing to our family and brings such delight to us all.

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.