Family Date Day: MPS in San Antonio!

Since Little Buddy's diagnosis, we have found it helpful to talk to and meet other families affected by MPS disorders.  They are not only a support and resource for us, but we hope that the neurotypical children of these families will be a good "super sibling" resource for Little Sweetie in the future, when she begins to understand more and has questions.

To that end, we were excited that the National MPS Society held a regional meet up for MPS families in Texas this weekend.  One, it was nice to get out of the house after all the flooding and two, it's always nice to be with other families who don't bat an eye at Little Buddy's behavior.  It was a quick trip, but it's always a treat to take the kids to San Antonio.  We ate dinner along the Riverwalk, finally made it up to the top of the Tower of the Americas, enjoyed another visit to the Alamo, and then had our first experience at Morgan's Wonderland, a unique theme park designed to create opportunities and places where those with and without disabilities can come together not only for fun but also for a better understanding of one another.  It includes rides, playgrounds, and other attractions that prove it is truly a place "where everyone can play."  We all had a great time, but sadly didn't get too many pictures as we were too busy having fun!

     

These two are ready for our adventure!

Taking it in from the top of the Tower of the Americas!

Time to go play!

A wonderful day with wonderful MPS families!  

Good night, 

LBM

Little Buddy's Momma

The Flood!

Oh my goodness, the weather has not been a friend to the Houston area lately!  

On Sunday night, severe storms with heavy rain and tornado warnings ripped through our area.  Thankfully, we were ok, but over the next several days, we continued to be hammered with rain and the area around us began to flood.  What it produced was an insane week of floods, power outages, school closing, cabin fever, messed up sleep schedules, and general insanity!

We watched the progression of the water rising in our backyard over the course of the week, concerned that the pirate ship was preparing to sail away!

I guess the slide and swings can be water toys instead?

     

     

Daddy even had to do a water rescue of the kids' Mustang and some of the other toys!

But it wasn't just our backyard.  Places everywhere were underwater!

Our spillway had turned into a river and kept creeping up our neighbors yards.

 

Our neighbor's yards were turning into waterfront property before our eyes!

Many businesses, homes, and schools were affected.

Even Daddy was home!  Many of the offices had to close down for at least one day.

With the schools closed down, one of the biggest challenges for us was keeping Little Buddy busy.  Sanfilippo kids have A LOT of energy.  Normally, we minimize this symptom by having Little Buddy do as much active play outside as possible.  But, with the continuous rain, the mud, and the concern about snakes and other wildlife coming up into yards to flee the floodwaters, keeping both Little Buddy and Little Sweetie entertained and safe became the challenge of the week!

Mr. Perpetual Motion just needs to run!

On Monday, I had Daddy home to help play with the kids, but he went back to work on Tuesday.  Thankfully, several roads had opened back up and we could get out.  And, being that it was a Tuesday, I was excited that I could take Little Buddy and Little Sweetie to the library for story time!  That was always one of Little Buddy's favorite things to go do before he started kindergarten.  And our buddy, L, was also off school, so he and Aunt S joined us.  It actually ended up being a fun morning.  We went with L to story time and then road the trolley, where we met Uncle M, Ms. M, E, and B for lunch!  Then we went with E and B to My Gym for the Practice and Play session.  It was a great way to work out energy.  I have barely any pictures, though, because I was too busy trying to keep tabs on both kids!

     

     

Little Sweetie and L checking out the Selfie Station at the library before story time starts!

The rest of the week consisted of trips to the Children's Museum, another My Gym session, and lots of book reading (especially with Little Buddy while we tried to let Little Sweetie sleep).  It was certainly an exhausting week!

      

 Playing at the Children's Museum!

Trying to enforce some quiet time so Little Sweetie can get her rest!

All my hard work must have paid off a little bit because, by the end of the day, I had a slightly tired boy who would give me some cuddles.

Finally, by this afternoon, the sun had come out and the waters had gone down.  It was so nice to get the kids outside so that they could swing!  Here's hoping that is our last bought of rough weather for a while!

Good night, 

LBM

Little Buddy's Momma

Family Date Day: Dynamo Edition

After nearly a year of trying, we finally made it to our first professional soccer game!

Little Buddy had gotten very interested in soccer last summer, so we had made arrangements to take him to see our local MLS team, the Houston Dynamo, last year.  Unfortunately, the day of that game, both kids woke up sick and we didn't make the game.  But, we got a redo today!

     

It was a Friday evening game, so we left right after Little Buddy got home from school.  It was very crowded and the kids were both yawning in the middle of the first half, but overall I think they had fun!  We remembered to bring Little Sweetie's headphones (everything is "too loud" for her right now) and I know those helped with her enjoyment of the game.  We enjoyed some popcorn and hot dogs and then called it a night after the first half was done.  We are hoping to go to another game, maybe one of the Dash's, that isn't quite as crowded, but overall we are counting this as a success!

Good night, 

LBM

Little Buddy's Momma

April 11

We have been so fortunate that the best month has just been amazing, weather-wise!  It's so nice to get all of this outside time in before the Texas summer comes with all its heat intensity!

          

Playtime and picnics...some of our favorite things!

And we also got to celebrate someone special in our lives...

"Hey, Daddy, did I hear that it is...

"...your birthday?"  

Happy Birthday, Daddy!

Besides being Daddy's birthday, March also meant that Little buddy was due for his quarterly evaluation for his clinical trial.  Because it was going to be a long trip, our good friend, Ms. D, decided to come with us!

We are ready to see you, Ms. D!

While waiting for Ms. D, we discovered a playground in the terminal she was flying into (a terminal we never use).  Yes, you heard that right, a PLAYGROUND at the AIRPORT.  How have I not known about this for the past year?!?!?!  Oh well, at least we know now!

Ms. D playing with Little Buddy while I get the rental car...by myself!  Woo!

Thank goodness Ms. D was here...Little Buddy accidentally scratched me across the eye with a fork and I had to go to the emergency room!  I'll be ok, but I did need antibiotic drops.

And thankfully, even with a healing eye, we all made it through Little Buddy's surgery day ok!

Getting his infusion on St. Patrick's Day!

     

      

The weather was even nice in Minnesota, so we got to play outside on the playground before going back to the hotel for some well deserved rest!

Thank you for all of your help this visit, Ms. D!  We'll miss you!

We left the cool weather of Minnesota to come back to even more beautiful weather in Texas, meaning we got to take part in one of our favorite Texas traditions...

...our bluebonnet pictures!  We missed doing them last year (life was a bit crazy after Little Buddy's diagnosis). 

We also got a cool surprise this month!  I had just found out about the I Run 4 program, which matches athletes of all levels and kinds (runners, walkers, yogis, triathletes, etc.) with "buddies",  children and adults with physical, mental, and developmental special-needs.  We signed Little Buddy up and a week later we got matched with Mr. Mark, whom has already run one half marathon in honor of our little guy!

     

We love our runner, Mr. Mark!  So excited to be part of this amazing program!

And then it was time for another Minnesota visit!  Thankfully, it was just a short infusion trip (and no one's eye got scratched with a fork)!

     

Infusion complete, grilled cheese eaten, smiles captured...now time to fly us home!

And then another sign of the season...opening day!  These two are ready to cheer the Astros on to victory!

Hooray for baseball!

     

Another month with our handsome and happy little boy!  Couldn't be any luckier!

Height and Weight

Coming in at approximately 60 lbs. and nearly 49 inches!

Personality

Still happy and excitable!  And brave and resilient.  After each of his quarterly appointments for the trial, I am always reminded of exactly how much this boy takes on with nary a complaint.  All these pokes and proddings have become normal to him and, even though he doesn't love them, his beautiful heart shines through as he thanks everyone on his medical team after a procedure is finished.  

Developmental Milestones

Even though it is now baseball season, Little Buddy has been wanting to play football around the house.  We have been amazed because his catching ability has never been the most stellar, but lately he is just catching the football left and right!  It's never been an easy skill for him, but to see him catch it so naturally makes

our hearts happy.  Now if we could only get him to throw it back to us...

Last month was "not" and, while that continues, we also are hearing a lot of "stop" right now.  I like that he's communicating more, but I would also like him to "stop" telling me that he's "not" going to do things I have asked him to do!  LOL!

We continue to worry about his attention, but I am trying to wait until I am with him full time again this summer to see how he is all day.  It is very hard to determine how he is with only having him after school when he is so tired.

Still going in the potty if we put him there, but he's obviously outgrowing the little potty he loves so much!  We have to see if we can get him to sit independently on the big potty!

Fun Tidbits

He's lately taken to telling us, unprompted, that he loves us randomly throughout the day.  I can't tell you how lovely those words are to our ears.  We love you too, Little Buddy.  Forever and ever.  

Until next month, 

LBM

Little Buddy's Momma