Oh 2015...

Oh 2015…

It would be so easy to write this year off as one of the worst of my life. I mean, being told your seemingly perfectly healthy son is dying is something that no parent should ever have to hear. This year should take the cake in terms of “most terrible things to ever happen to us”, right? However, if I think more deeply on it, 2015 was actually a year of miracles for us. 

Diagnosis or not, Little Buddy has been dying of Sanfilippo since the day he was born. The difference is, now we know. And knowing gives us power. It gives us the power to enjoy every moment and focus on making memories instead of wasting precious time dealing with misdiagnosis and searching for answers that most doctors wouldn't have been able to give us. Ignorance may be “bliss,” but it’s much better to know the monster you are up against. 

And receiving that diagnosis was a miracle within itself. If both kids hadn’t napped at the same time on that fateful day in February, if I hadn’t decided to check out the news on the Today Show, if I had brushed off the warning bells that Eliza's Story had triggered in me as "mommy paranoia"…if, if, if. So many “ifs”. If things hadn’t played out the exact way they did, Will still might not be correctly diagnosed.

But things did play out in that amazing way, and the miracles didn’t stop there. If I hadn’t been so touched by Love Ross & Meredith’s story when researching Sanfilippo Syndrome and connected with the Davis family, we wouldn’t be in the clinical trial. It was them I called crying when Little Buddy got his Type B diagnosis and it was them who immediately called their contacts in Minnesota. You don’t get diagnosed with a rare, incurable genetic disease on a Tuesday and get a call about getting the last spot in the first ever enzyme replacement clinical trial for said disease on Wednesday. That DOES NOT happen.

But it DID. 

And still the miracles continued. The way our family, friends, and even strangers took up our banner to spread awareness about and raise funding for Sanfilippo. The way we connected with other families who assured us that we were not alone. The way the community rallied around Little Buddy to make sure that every moment of his life was magical and full of JOY. A year that should have destroyed us has actually made us even stronger if I take the time to truly reflect on it. 

So yes, 2015 was definitely a challenging year, but a terrible year? I can’t say that. For us, it was truly a miraculous year that has given us KNOWLEDGE and HOPE. And I pray that 2016 is filled with MORE miracles, not just for Little Buddy, but for every other family suffering with this disease!

Do you believe in miracles? Because we do. And we want to wish all of you a New Year filled with them!

Have Yourself a Merry Little Christmas

I will admit, even though we certainly believe it to be the "most wonderful time of the year", the first Christmas knowing Little Buddy's diagnosis wasn't the easiest.  Holidays tend to put things in perspective; you always think you'll be able to celebrate these special days with those you love, but after a devastating diagnosis, you know time is a luxury.  I would catch myself crying over little things; like how precious each Santa picture with both my kids in it actually is, or how happy I was that Little Buddy was still asking for age-appropriate presents, or how beautiful it was to here Little Buddy sing Christmas carols.  It was a hard balance to find the right amount of reverence for these special moments without slipping into the depression of "what ifs", but thankfully both Little Buddy and Little Sweetie's inherent joy in the season helped me stay in the moment, even if we had to travel the week of Christmas to start Phase II of Little Buddy's clinical trial.

And so, with the end of Thanksgiving, we jumped right into Christmas preparations!

These two are ready for Santa!  Both are asking for Paw Patrol toys!

Little Buddy did a great job on all his Christmas crafts at school!

Thanks to some dear friends, are tree was properly outfitted for the season of miracles as well!

And soon enough, the big day was on the horizon.  As was family tradition, the kids got a surprise visitor on Christmas Eve!

     

Santa's here!!!  Little Buddy went right up to greet him and lost no time in pointing out our decorations and again putting a request in for Paw Patrol!  Little Sweetie kept her distance for the first part of the visit...

     

...until Santa pulled some small Christmas Eve gifts out of his bag to distribute!

     

Presents make everything better.  Little Sweetie finally allowed the strange man with the weird beard to give her a hug!

Little Buddy also gave hugs...

     

...but wasn't so sure about allowing Santa to leave!

After Santa did leave, it was time to read some Christmas stories together as a family...

...and to put out all the goodies for Santa and his reindeer!  Night, night kiddos!

 And then it was Christmas!!!

"SANTA CAME!"

Obviously, Santa thought we had been pretty good this year!

     

Little Sister was excited for her new doll house!

     

And both kids played with the new Paw Patrol toys the rest of the day!

So, yes, even though we are still adjusting to our new normal, especially during the holidays, our Christmas was very merry, and one to be treasured!

Merry Christmas, to one and all!

LSM

Little Sweetie's Momma

Dec 19

Christmas is coming!  

I can't believe Christmas is nearly upon us!  Little Sweetie and I can't wait for the holidays and for Big Brother to be home with us, but we are also loving how great our routine has been all fall and are enjoying our last few days alone before the holiday craziness fully kicks in.

     

Love our library dates with our friends!  Little Sweetie and J have such a good time together!

And having lunch together right afterwards only makes it more fun!  We loved doing these activities with the big kids; glad we are able to continue it for the little ones!

Little Sweetie is still loving her My Gym class and gets braver every time!

     

My favorite errand runner still loves the Ergo, especially when her stroller is loaded with returns!

Another errand, another smile.  Love my little WILLPower representative as we pass out Thank Yous to everyone from the tree lighting!

     

Little Sweetie also got a special treat this month.  Momma and Daddy's friend from Ohio, Ms. D, came to visit and play just with Little Sweetie!  These two had a blast (and Momma got some work done)!

     

And it's time for Big Brother's Christmas break!  No better way to start it off than with a trip to the zoo!

Height and Weight 


Roughly 26 pounds and a hair over 34 inches.  Daddy is hoping to get into the 30 pound range soon so that he can flip her carseat to facing forward   

Personality


Very inquisitive and gaining confidence.  She loves to learn knew things and believes in herself that she can do it.  

Helping Daddy build the Christmas kitchen for Baby L!  Don't worry, Daddy, she's got this!

Developmental Milestones

I'm still so in awe over her potty training that I can barely speak.  She's still going strong.  I can count on one hand how many accidents she has had and she always lets me know if she needs to go.  We are even keeping a travel potty in the Jeep now and it's been working wonderfully.  She's hasn't worn diapers at day or night for over a month.  After everything that happened with Big Brother in terms of potty training, her willingness and independence in this area is a blessing to us.  We are so proud of her!

Go Little Sweetie, go!

Fun Tidbits 

Fun TidbitLittle Sweetie is quite the hair twirler!  While it is cute now, she's also starting to pull out some of her hair!  Here's hoping this is just a phase before I have a bald baby!

     

Professional twirler.

Wishing everyone a good holiday and end of the year, 

LBM

Little Buddy's Momma 

We Are Thankful

After a late night being the Lighting Luminary, it is time for this brave boy and his family to head to Minnesota for the end of Phase I of his clinical trial!  We're excited for Daddy and Little Sweetie to join us on this trip!

     

Just hanging out at the airport.  Seriously, iPads for plane trips are God sends.

Our Minnesota trip started off with us getting off the plane and heading directly to the hospital for Little Buddy's cognitive evaluation.  I was nervous how he would do after a late night, early morning, and then a plane ride to top it off, but I actually think that he did great!

The cognitive evaluation was the only appointment for Friday, so we got to have the whole weekend for a little exploring before the rest of Little Buddy's tests the next week.  

 The Children's Museum was one of our first stops.  Lots of fun and...

We got to meet our first other Type B family!  We loved meeting the L family.  Little K is in the same trial as Little Buddy.

It was also our friend, L's, birthday!  L has Type A and is in his own clinical trial.  We were so touched by his family inviting us to their house to celebrate L's big day.  We do really feel such a strong bond with other Sanfilippo families and it means a lot to us to be able to spend time with them.  Plus it was nice to be in a Sanfilippo proof house and not stuck in our hotel room! ;)

The boys had a great time together!

Worn out from the party!

After Little Buddy woke up, we decided to check out the Mall of America!  Little Buddy was amazed to see a Roller Coaster and Ferris Wheel be inside a building!

Almost overwhelming to walk into!

I somehow managed to not buy out the American Girl store for Little Sweetie!

     

     

     

Being a ham with Daddy during dinner at the Mall of America!

But our fun wasn't over yet!  We got to see not one, but two more Sanfilippo families before bedtime!  

Little Buddy and J, another Type B boy in the study!  So glad to finally meet him and his family!

Our friend, R, was back into town for her study too!

Little Sweetie's getting a little too used to this hotel life.

But finally our weekend fun had to come to an end.  It was time for the real reason Little Buddy was here; the end of Phase I!  He had to have a lumbar puncture, an MRI, and a PICC line placement in order to do blood work over the course of the week.

Daddy's ready to ride back with our brave boy.

Dr. Little Sweetie is tired of being in the waiting room and wants to jump into surgery!

     

     

"Bubby need be all done.  I am going to find him with this computer.  Here he is!  Bring him to us!"  Someone was DONE waiting.

     

It's always a process to wake him up after surgery, but thankfully he adjusted well once we promised him cartoons on his iPad!

Little Sweetie was now just DONE with the whole long day!

The next day was even LONGER.  It was infusion day, but Little Buddy also needed 24 hours of blood draws following the infusion.  That meant a full day AND night at the hospital.

Daddy and Little Buddy all comfortable during the daylight hours of infusion...

     

Momma pulled the night quite as cozy night shift, complete with an outfit change to scrubs since Little Buddy's tummy was acting up.  

     

Thankfully, all went well and we excite and ready to be discharged the next day!

Sadly, Little Sweetie was too worn out to even think about eating dinner.

Goodbye, Minnesota!  We'll see you next month for the start of Phase II!

We flew home on Thanksgiving.  It was fitting in a way.  Though there was no turkey dinner or family trips, I think we really had the spirit of the season in our hearts.  This year has certainly had its up and downs but we continue to be thankful.  Thankful for the friends and family that have stepped up to bat for us.  Thankful for the wonderful therapists and teachers in Little Buddy's life.  Thankful that, even though we hate it, we have the truth about what is going on with Little Buddy.  Thankful for all the support of our Sanfilippo family.  Thankful for the opportunity and hope the trial gives to us.  And thankful for each other and all the memories we are making.  

And speaking of memories...

Guess who tripped, fell, and lost his first bottom tooth?  :)

Unfortunately, the tooth was MIA (he must have swallowed it), so we wrote the Tooth Fairy this nice letter explaining the situation.

Reading stories with Daddy and discussing the Tooth Fairy!

     

     

Thrilled over the five dollars that the Tooth Fairy left him.  Yes, FIVE DOLLARS.  That's what he insisted the Tooth Fairy was going to bring him so I guess she complied.  I think she got conned.

The end of Thanksgiving means the beginning of the Christmas season at our house, so the kids were excited to see that our elf, Pat, had arrived and brought a basket of wrapped books.  The kids love opening one each night as we prepare for Christmas.

I love Christmas story reading time.

Pat the Elf, keeping an eye in the sky!

So I close tonight both thankful for the workings of the past year and hopeful for the year ahead.  May next Thanksgiving be as full of blessings as this one was!

Happy Thanksgiving,

LSM

Little Sweetie's Momma