Sunday, June 21, 2015

Happy Father's Day!

What a wonderful day it was to celebrate our Daddy, a man whose patience and strength is the guiding force of our family!

We were lucky enough to start our day with church with Uncle M, Aunt S, and Baby L.  This was especially fun because Uncle M is Little Sweetie's Godfather and Daddy is Baby L's Godfather.  Happy to celebrate so these awesome men together!  And certainly happy to have a Chuy's lunch together with them afterward!


This family loves this guy!



Best Daddy ever!



And Godfather!



Godfather and Daddy M, on duty!



Grateful to have such wonderful role modals in our children's lives!



After Chuy's, then it was time to head home so Momma could make Daddy his favorite treat:  peach pie!

     

     

Yay for pie!


While the pie baked, these ones had fun out in the backyard.  What a beautiful scene to come upon.  No matter all the trials we face, we have a strong bond of love to hold us all together.



Hammock time with Daddy!


After dinner and pie, it was time for presents (and baths...hence the kids in their undies)!  Even though Daddy's furry kid didn't cooperate with the picture, we think Daddy liked his new shirt and the Batman pajama pants that Momma made him!  


     

Who has two thumbs and is an awesome dad?  This guy!


Happy Father's Day Sweetheart, there's no one else I'd rather have by my side for this wild journey of parenting!  Our kids are lucky to have you!

Hope all the other Dads out there enjoyed their day, 

LSM

Little Sweetie's Momma

Friday, June 19, 2015

June 19

Little Sister may have only grown by a month from May to June, but it feels like so much more.  Our baby girl is maturing every day, both by natural progression and by circumstance.  We couldn't be more proud of her.  

     

Driving her car through the car wash at My Gym!





Playtime in the upstairs playroom!




"Um, I'm trying to eat my fruit strip here, Dad."






Lunch with Baby L!






Fishing time with Big Brother!



     

"Yay!  I stole a brownie!"
"Oh no, what do you mean it was the last one?!?!"




Well, if nothing else, the baby doll will be potty trained soon...



     

Someone stole Big Brother's shoes and is showing off!



     

Acting as a WILL Power ambassador and accepting a check from My Gym on behalf of her brother (who had school).  Seriously, so proud of our little girl!



     

Helping Big Brother wait for the bus on his last day of school!





Daddy's work collected donations for the troops.  Little Sister wanted to give them toothbrushes and Big Brother picked granola bars.  So proud of their generous hearts!




Relaxing in bed with Momma!




Finally, out Little Sweetie was approved to get her genetic testing.  Soon, we will know for certain if she is unaffected by, a carrier of, or afflicted by, Sanfilippo Syndrome.  We are cautiously optimistic that she is ok, but please keep her in your prayers as we wait for her results.


Height and Weight 
She's currently at 23.2 lbs. and holding at around 32 inches (with a margin of error to account for squirminess!). 


Personality
Very happy and sweet, but has been oddly grumpy lately.  Especially at breakfast.  She'll ask for her food, but then pushes it away angrily when we give it to her.  But then we pretend to eat it and she immediately wants it back and is happy again.  I don't even attempt to understand!  Other than that, and her immediate screams if Big Brother even attempts to touch a toy she's holding, she very happy-go-lucky.


Developmental Milestones
Still doing great with shoes (even getting better on the correct feet issue) and really working on this dressing herself business.  And God forgive you if you forget her hat or or bow (or try to take off these precious shoes)!

Her words are growing daily, but I think my favorite one right now is "happy."  Hearing her say that she is happy and seeing the accompanying smile on her face just warms my heart.  

We also made a big jump this month:  she no longer needs her zippidee-zip and instead is sleeping in just pajamas!  Considering that a month ago I was wondering if I would need to find these in adult sizes so she could sleep for the rest of her life, this is a huge development!  

Another reminder that she is a becoming a big kid is that she now insists on using a real toothbrush like her brother's.  She chose a purple Teenage Mutant Ninja Turtles brush and is now obsessed with brushing her teeth.  I guess this is a habit I should keep encouraging!



Fun Tidbits
Later this month, Little Sweetie will start having some one on one time with Aunt J while Momma and Big Brother go to Minnesota for Big Brother's enzyme treatments.  Even though our trips will be short, I am going to miss my little girl.  We've barely been separated since she was born and the idea of leaving either of my children right now, for any amount of time, is hard.  Thankfully, she's an extremely easy baby and I know she'll be in good hands.  And it will be good for her and Daddy to have some one on one time too.  But I'm going to miss her so much when I'm gone!  

See you next month!


Good night, 

LSM

Little Sweetie's Momma

Wednesday, June 10, 2015

Return to the Land of 10,000 Lakes

It was time.  Time for us to go back to Minnesota so that Little Buddy could take his spot as the last trial participant in the first Sanfilippo Type B enzyme replacement therapy clinical trial in history.

Such a momentous day had to being with waffles.


Game face on.  Let's do this.

  


Flight went well!  Enjoying his new Minneapolis favorite, Pizza Luce.  Last meal before his surgery.




Long day of blood draws and surgery prep.  Thankfully technology keeps all three of my kids entertained!




     

Hanging out, waiting to go back for lumbar puncture, MRI, port placement, and temporary PICC line placement.  Daddy got to be wheeled back with him for anesthesia.



  

And our boy is back!  Everything went well.







Little Buddy (and Mickey!) are settled in to their plus accommodations in the hospital.  Here's hoping for a good first night!



We've also got to give a shout out to Little Sweetie, who was such a trouper during a very long day.  Momma and Daddy were so thankful for her smiles and perseverance!


Having a blast in the waiting room!



     

Official brother checker and guarder!




Just being an awesome sister.




Crashed out on the way back to the hotel with Daddy.


How that we had made it through surgery day, it was time to start infusion day.  Little Buddy was going to be one of only 11 Sanfilippo Type B children in the world receiving any treatment for his terrible disorder.  It's scary, giving him experimental medication, but it is our only hope.  We are just in awe that he has this chance.  


Managed to get some rest!  Now to get ready for the big day!



 
    
     

And here we go!  In the room and on the bed.  He will receive a two hour enzyme infusion each visit along with at least 2 hours of monitoring following it.  



Grilled cheese for lunch!



     


He really enjoyed the music therapy they offered.  A great way to keep him busy for a bit of time during the infusion!



     

Finishing up the day with some pancakes...






And a rainbow!  We'll take whatever signs of hope we can get!



     

Now, it's time to charm the nurses...



     

...and NOT be in that hospital bed anymore!



     

Meanwhile, Daddy and Little Sister finish their breakfast and grab some for Momma.




     

So proud of our hero.  Please pray that this treatment gives him a chance at LIFE!




Now let's blow this popsicle stand!  Discharged!


Until next time, Minnesota!

LSM

Little Sweetie's Momma