December Randoms

One of our few kids who actually enjoys tummy time. Lulu needed some serious mama cuddles. Dancing with mama. Slugs and Bugs concert was a hit! It took a lot of setbacks but Emmie FINALLY potty trained.  A combination of her brace getting too small and going sans pants for two weeks was just what she needed.  Undies rule for this super hero.
I got to meet my friend Tracy’s sweet new baby K. Tobins smiles abound. This baby “geek” has a muffin top! Ace lost his head. Doggy train. Tobin and his buddy L who is a month older.  They are starting to actually notice each other. Tobin in a meeting with his brothers and daddy.

Zoe felt that the statue of David needed a little fashion help.  She colored some skinny jeans for him.

Facebooktwittermail

A Bunch On Ice

Emmie performed at a local festivity with her Steps of Grace ballet group.  As a reward, they gave the performers a ticket to come back.  I had declined the tickets because the event is very expensive (and included ice skating among other activities).  They surprised us by gifting us tickets for everyone!  So, the day after Christmas, we headed out.  We had some reluctant skaters but we told them that EVERYONE would at least try one time around.
Emmie was a trooper but one time was enough. After a couple of rounds with the guard, several of our kids took off.

It was fun but we realized pretty quickly that we are very grateful we didn’t invest the money in tickets.  Only a few actually skated for more than ten minutes. This is good to know for future ice skating trips.

Facebooktwittermail

Merry Christmas!

In April no less!

Emmie begged for Lazy Lights aka Laser Lights.  I convinced Mark that they were a small investment for a big thrill.  He reluctantly consented.   Then he asked for a family movie night to watch Polar Express.  We had hot chocolate, sweet treats and broke out our Christmas pjs! Christmas day and our annual picture by the tree. Tobin was obviously impressed by the festivities. Mark decided a few years ago to start a Fonatini collection.  I look forward to what he adds to it every year. Sleeping baby cuddles…yes!  Even if I was getting choked!

Right after Christmas, our “god” daughter and her family sent us a yummy treat box!  Everyone was excited at all the fun stuff!

Facebooktwittermail

P & G Christmas

We enjoyed a Papa and Grandmere visit right before Christmas.   Chess is always a must when they visit. We celebrated Zoe’s birthday… And Liam’s Grandmere helped with our annual pretzel dipping. Papa & Grandmere gifted us with a Fuf!  Ya’ll this thing is huge but awesome.  It’s stuffed with memory foam so it never has to be refilled. Tobin got some sweet cuddles too.

Facebooktwittermail

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.

Facebooktwittermail

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.

Facebooktwittermail

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.

Facebooktwittermail

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.

Facebooktwittermail