Sunday, July 17, 2016

Family Date Weekend: Jellystone Park!

As we try to make the most of our summer together, we decided to cross another family activity off of our list:  Camping!  Both kids had been asking to go camping for awhile, so we decided to do a trial run at nearby Yogi Bear's Jellystone Park!



We are here!


We got a cabin by the lake and the kids really enjoyed exploring it, especially the loft part upstairs!  We spent the first night settling in and reading stories.


Checking out the loft!





Reading stories by flashlight!



The second day was the big day for the kids.  We got to meet Yogi (although Little Sweetie thought he was better from a distance) and played all day at the water park!  We finished the day with an ice cream social, ceramics painting, and Little Sweetie trying her hand at fishing!

     

Hi there, Yogi!



Chatting with Yogi before the pool opens!



     

We didn't get a ton of pictures at the pool because we were so busy, but lots of fun had by all!




Little Buddy devouring his ice cream at the ice cream social!



     

Little Sweetie making up her own version of the Snoopy game in the cabin.




She ended up LOVING fishing!



Our last day started pretty uneventful, but finished as anything but.  We enjoyed a pancake breakfast before packing up the cabin to head home.   However, during the packing process we had a mishap.  You see, Sanfilippo has robbed Little Buddy of his attention span.  He can no longer focus on anything for any given time.  Having to pack up while a hyperactive six month old is running back and forth in an non-childproofed cabin is not an easy task.  We can't even put on a show for him and trust him to sit still and watch it, sadly.  However, the cabin did have a screened in front porch and Little Buddy loves to pretend to sweep.  The porch was empty, so we put him out there with a broom to sweep and jump around to his heart's content while I packed the cabin and Daddy loaded the car.  All was well and good until I heard the screams and saw the blood.  :(

Little Buddy had somehow pulled the cap off of the end of the handle of the metal broom, exposing a sharp circle of metal, which he then put in his mouth and tried to run with.  Of course, since it was a mouth injury, there was blood everywhere.  I steeled myself so that I could calm him.  At first I was concerned that he had knocked out a tooth, but when we leaned him back to look, I noticed that he had scrapped the roof of his mouth.  We calmed him down and cleaned him up and soon he was fine and even drinking water.  Because the bleeding seemed to stop, his tetanus was up to date, and he was driving and acting fine, we decided he was ok.  I held him while Daddy packed the car and off we went.  We event stopped to get lunch, which he ate just fine.

But that wasn't the end of it.

Later that night, I noticed Little Buddy clearing his throat oddly, so we laid him back to look in his mouth again.  Initially worried that the scab on the roof of his mouth had opened, I was horrified to find that this time I could see back further into his throat and that he had actually cut a dime-sized chunk of flesh out of his throat with the broom!  We immediately rushed him to the emergency room, thankful that our neighbor was home to watch Little Sweetie while we did so.

To make a long story short, the ER doctor said that Little Buddy was going to be OK.  He had injured himself over his hard palette and it would heal on his own.  We just had to administer an antibiotic and use a mouthwash to prevent infection.  It was scary to hear, though, how lucky we were.  If the injury had been just a few centimeters to the side, Little Buddy would have cut over his soft palate and possibly into his carotid artery.  My heart stopped as the doctor told us that.

We knew that our lives were going to be harder with Little Buddy's Sanfilippo diagnosis, but this was the first time that we came THAT close to a live-threatening situation.  We are immediately putting measures into place to help keep him safe, including looking into have a secure chair to put him in when one of us can't be with him or hold him.  We love our Little Buddy so much and we hate what this disease is doing to him.  But it is our reality; so we will adjust so that we can keep making memories together as a family.  Because our time together is what matters most.  



Starting the day with pancakes...




...but ending in the ER.  Thanking God that Little Buddy is ok!


Hoping for many more adventured-filled family dates, but maybe with less injuries!

Good night, 

Little Buddy's Momma

LBM

Monday, July 11, 2016

July 11

Another month here we are!  Full ensconced in summer fun!

Some of the summer fun includes this big news...one of Little Buddy's babysitters competed in the Olympic trials!  And made it!  Ms. K  is a diver and will be representing the USA at the Olympics next month.  She has also been awesome as she spreads WILLPower around the pool.  Hoping she will continue to do so when she competes in Rio!

     


Ready for trials!





Cheering on Ms. K!  We are so excited for her!




Ms. K's family brought us to tears by showing us their WILLPower while at trials.  Thank you to everyone who helps us spread the message!



Ready to take her WILLPower to Rio!



Speaking of the pool, we have been lucky enough to get a little bit of pool time in this summer.  I can't take both kids to the pool by myself during the week, so we have lucked out by having friends invite us over to swim on the weekends and that we have been able to take another of our awesome babysitters, Ms. A, with us to the pool during the week!  Texas summers are hot and trying to stay cool is our main goal!  Swimming also helps keep our little man loose, helps him burn energy, and actually helps him focus better on us since he can't get as distracted while in the water.


Having tons of fun at Mr. St and Ms. C's pool!




Safety break and lunch with Ms. A!  Thanks Ms. A for swimming with Little Sister while Momma stays with Little Buddy!



Even though it is summer, there is no break in our travel and treatment schedule.  Minnesota is still our constant routine!

     

Professional travelers right here!




Also a professional hotel lounger.  Can't believe how big he looks in this photo!




Not thrilled with his EKG.



     

     

However, he was thrilled that they brought the music therapy program back to the hospital!  We love music time with Ms. G!  Such a fun way to help pass the time during infusions.




But we are always happy to get home!



When we can't get to the pool, we bring the pool to us!  We decided to buy a small inflatable pool for the backyard to help keep us cool so we can stay outside longer.  It's definitely been worth the buy!



     

     

The best part has been watching these two play together in it.  I hope that Little Sister always remembers that her big brother really did try to play with her as much as he could.  




And we always end the day with sibling story time with Daddy.  Love them all!



Height and Weight
Staying strong at about 50 inches and 60 pounds!

Personality
Very joyful right now!  I think the laid back nature of summer suits him!


Developmental Changes
I know I was a bit of a downer last month on this topic, but I am writing the blogs to preserve Little Buddy's history and the truth is that Sanfilippo is starting to take its toll.  Seeing old videos of him from a year or two ago can be very hard.

But, we have had a good month this month.  He's been asking more questions again and also asking us to spell words.  It's just trying to keep him engaged and focused that is the challenge.  We even a had a good day where I was able to get him to kick a soccer ball again.  I'll take every little positive I can!


Fun Tidbits
Little Buddy is doing a special needs music class this summer and he is really enjoying it!  And I am enjoying the fact that there was actually an activity flyer that came home from school that I could sign him up to join!  It's nice because he spends 45 minutes in a room with the other kids and the instructors and Little Sister and I stay in another room with other parents and siblings as we wait for the class to finish.  Little Buddy loves music and, to be honest, some days I just need a little respite from him and the constant need to supervise him.  With him not taking naps anymore, it's just a long day for Momma.  But this has been a great way for me to get a mental recharge (while meeting other special needs moms!) and for him to have some fun!

Until next month, 

LBM

Little Buddy's Momma