Saturday, April 11, 2015

April 11

Today we celebrated 4 year and 10 months with our miracle baby, our miracle baby whom we now know is more rare than we could have ever guessed.  Every moment is precious and we're trying to make the most of them.



Ready to enjoy his month birthday brownies!




However, he thinks all these extra birthday celebrations means that he can drive!  Sorry buddy, not yet!  The best you can get is...



     

     

     

...a ride with Daddy on the mower!  Thankfully, this is a substitute he loves!



He's actually been a big helper lately.  Obviously we are trying to just be with him as much as possible, so this includes finding ways for him to help us with the chores.  I think he and Daddy had lots of fun washing the cars togethers.

     

     


"Hey Dad, once I'm finished with my Cozy Coupe (which I am way too big for, but I refuse to give up), I'll give you a hand with your truck!"


But it's not just work going on around here; still lots of play!

     

Always ready for some park time!


     


And always ready for a photo shoot after Chuy's!


And playtime definitely includes lots of time with Little Sister!  I have to admit, as wonderful and beautiful as these moments are, they are hard for me to watch.  All I've ever wanted was for them to be best friends throughout their lives and seeing how much they love each other reminds me that I am not just facing losing a son from this disorder, but your daughter faces losing her brother.  So yes, as much as I love these moments, they are usually the ones that bring me to tears.  I love them both so much.


Planting flowers together!



They both love playing with the dog statue at Old Navy!


     

Big Brother giving sister some kisses while taking her on a drive!


     

     

They love each other so much!



Height and Weight
With sinus drainage, Little Buddy's appetite abated a bit bringing him down to 55.8 lbs.  It's also funny because his body is growing taller (46 1/4 inches now!) and thinning out.  His legs and arms are so skinny!  His belly, the beautiful round belly that I love to kiss, is still round though, and we know now that is a symptom of the Sanfilippo.  I still love that belly and I always will.  

Personality
Sweet and loving.  Besides battling drainage from pollen, he's actually been having really great days. He's happy and adventurous, and full of joy over the new experiences we are trying to provide him.  He's been a champ at all his doctor appointments as well!


Dear pollen...go away!


Developmental Milestones
Little Buddy is doing great.  He has added physical therapy to his routine and his therapist said that he is strong and flexible, so we're going to work on making sure he stays strong and get stronger!  We've also noticed him expressing himself more in speech and combining words to make more complex sentences.  This is great because it is showing that, while delayed, he is still developing and not regressing yet.  This is important because, if we can get him into a clinical trial, the most benefit will be derived prior to any regressive behavior.  


Fun Tidbits
He's fun.  This amazing boy.  Every moment with him is fun and amazing.  How can I pick just one?


Cheese face!



"Come outside and play, Mom!"



These two own my heart.  Please pray for us!


Always, 

LBM

Little Buddy's Momma

No comments:

Post a Comment