Monday, February 22, 2016

Dentist Days!

What a great day at the dentist!!!

Bet you never thought you'd hear a mom of two say that, but it was!  Even though I was incredibly nervous going it, both kiddos were super brave and are still cavity-free!  We were very proud of Little Sweetie for getting over her nervousness and for Little Buddy for actually tolerating his first set of x-rays(!) and his teeth cleaning!  It was so awesome, it deserved a blog post!


Little Sweetie was excited that we picked up Little Buddy from school for a quick lunch before our appointment.  And both of them were excited that Daddy joined us too!



     

Momma just had to hold his hands down while they worked on his teeth, but otherwise Little Buddy didn't struggle at all!  Truly an accomplishment!




Little Sweetie was a tad nervous, but Daddy held her hand through it all, and she did great!  Unfortunately, that meant we didn't get any pictures until the end when she wanted to show off her clean teeth and new backpack!  Our pediatric dentists are amazing!



     

A quick stomp in the puddles with her rain boots while we drop Little Buddy back off at school!


So proud of them both!  I hope we only have appointments like this in the future!

Have a great night, 

LBM

Little Buddy's Momma

Saturday, February 13, 2016

Family Date Day: Sesame Street Live!

We got to continue our yearly tradition today of seeing Sesame Street Live!  Going on strong at five years running!  Today, we had an extra special time because Aunt S, Uncle M, and Baby L came with us too!  I didn't get many pictures, but we did have a lot of fun!


And here is the show!




Little Sweetie was mesmerized!




Little Buddy did well, but was most excited about getting his yearly Elmo/Cookie Monster balloon!  Sadly, he played a bit rough with it and it only lasted a day, but he enjoyed it!




Little Sweetie and L share a little post-show kiss at dinner after the show.  I think they are Valentines this year!


Just a lovely family day!  Until next time, 

LBM

Little Buddy's Momma

Thursday, February 11, 2016

February 11

Another month has flown by with our sweet boy!  He is such a trooper every day!


     


February found us keeping our New Years Resolution of not getting too caught up in Little Buddy's diagnosis.  Instead, we want to focus on our family time and how precious it is.  Our family movie nights and family game nights have been going really well, and we even got to sneak in a family lunch picnic when Little Buddy had a day off a school!


But not getting caught up in it does not mean that we don't fully live it every day, especially with our Minnesota trips.  We try to be as "normal" as possible, just remembering that our normal will always be a little different from others' normal.

     

My handsome boy actually slept a little on the plane this trip!



His favorite thing about our trips..."driving" the car while I put in his carseat!



Skyping with Little Sister.  We hate to leave her, but glad these two show such love for one another!




Just getting his hopefully lifesaving infusion while watching some Paw Patrol with Ryder.  No big deal.



Happy smiles--for now--as we wait for our delayed plane home.  We made it, but it was a loooonnngggg wait in the airport with a hyperactive Sanfilippo kid!  He almost made it down a gangway to get on another plane!



Yay, our plane finally arrived!




Finally, bedtime stories with Daddy after a long wait and flight!



Otherwise, life continues on...

     


Super handsome for Dress Politely Day at school!




Momma made it to take both Munchkins to Church for Ash Wednesday by herself!  A peanut butter and jelly tailgate first followed by Church.  I won't say it was an easy experience, but we made it!



He's just a kid like everyone else.  Sometimes it's too easy to remember that and sometimes it's hard to remember that.  

     

He likes looking at books...



     

...he loves eating...



     

...working on sight words...



...and being with his sister!



     

Our handsome hero, this month and always!




Height and Weight
Coming in at 61 lbs. and nearly 48 1/2 inches.  Goodness knows we'll need to go shopping for new clothes for him soon if this keeps up!

Personality
It was bit of a rough month for a our little guy.  He's just seemed a bit more emotional and short tempered than normal.  On the weekends he seems ok (and even seems to be relish an hour long afternoon nap) so we're hoping that it's just the adjustment back to the grind of school and travel.  

Developmental Milestones
Again, we still don't notice any regression, which is good news.  As I mentioned, he has been a little moody and "off" this month, which worried us because when he's not feeling great, he doesn't do or say as much.  But our fears are calmed each weekend when he does great.  We have to remind ourselves that school, therapy, and travel are A LOT for a little guy to handle and that we can't go looking for things to be scared about, but focus on being present in the moment.

One good thing we have noticed is him trying to control his frustration.  Many times, when he gets frustrated, he smacks at Momma.  We talk to him constantly about "no hitting" and making the right choice and we have noticed that when he gets frustrated, he's starting to yell "No hitting" instead of smacking out at Momma in anger.  He's still very verbal, but doesn't have the skills to always tell us what is making him frustrated, so his smacks stem from that.  It's been great to watch him start to recognize that feeling and try to tell us without resorting to being physical.  

Fun Tidbits
There's lots of running coming up for Little Buddy!  Not only is he ready to add another medal to his WILLPower medal board through Run Club, but a great group of ladies is training for the local half marathon in his honor!  We are so blessed to have such amazing people taking up the cause in honor of our sweet boy!


     


Ready for another Kids' Marathon Medal!





We run for Little Buddy!

We'll see you next month!

LBM


Little Buddy's Momma

Monday, January 11, 2016

January 11

We finished 2015 and started 2016 with a lot of love and fun.  We are lucky for every moment we spend together!



We are so excited for Little Buddy's winter break so we can spend more time together!  He brought home some amazing holiday projects from school though!





     


Little Buddy on break means we can have a zoo day!  The elephant baths were a big hit for both kiddos!






He was so excited to be able to go to a My Gym Practice and Play over break!







We also got to share a milkshake over break.  It was bittersweet, though, as it was a Milkshake for Miles, another Sanfilippo boy who had just passed away.  We are glad we got to honor this dear boy, but it just reminds us how tenuous Little Buddy's future is.




     

A very big day...close seats for the Texans game!  Little Buddy was in heaven, first with a peanut butter and jelly tailgate and then with watching his favorite players intently for the first half (the second half coincided with nap time and everyone was getting tired and cranky.  We'll take making it through half the game as a win!).




     


Winter break wasn't all just fun and games...we had important work to do in Minnesota!  Just another day in the life of a clinical trial participant!







     


     


We've also done a lot of running this break!  Not only is Momma training for the half marathon (where she is running in honor of WILLPower) but Little Buddy is loving Run Club!  He's nearly finished his 25 miles over the course of the season and will receive his children's marathon medal after the 2k race.  We're so proud of him.  We may not know what the future will bring and what functions he may lose so, for now, we RUN.


Height and Weight
Staying strong at 60.2 pounds and slightly over 48 inches!  Definitely still holding his own sidewise!

Personality
Our sweet boy is just as energetic and lively as ever!  His eyes still sparkle with his joy and his smile is still infectious.  School and travel does take its toll, though, which makes him tired and prone to be a bit emotional at times.  But we can always get him back with a tickle and a joke.  :)

Developmental Milestones
No regression that we have noted yet, which is always music to our ears!  He continues to show slow progress in all areas.  We are very hopeful that the drug is working and at least will allow him to maintain skills while we hope for a cure!

Fun Tidbits
We tried a new pizza place earlier this month and the wait was longer than anticipated, but Little Buddy was up for a game of tic-tac-toe to pass the time.  With minimal help and demonstrated understanding, he actually beat Momma!  We were so proud of him and he was very excited!


"Who beat Momma?  This guy!"


Until next month, 

LBM

Little Buddy's Momma