A Sister’s Story


My 10 year old daughter came home today with a story she is working on in school.  She had to choose someone she knows to write about, and she chose her brother! It was so sweet I had to share!  🙂


1 year Seizure Free!!!

I’m so excited to announce that Saturday was Zane’s 1 year seizure free anniversary!  We are so thrilled and we threw a big party to celebrate.  We figure we need to celebrate everything, because with Infantile Spasms / Epilepsy, and really just life in general, you never know what’s coming next.  It was a great day and Zane loved the inflatable moonwalk and giant slide!  We even had “baby back” ribs to celebrate!  If you remember back, that was our signature line…  since we got our “Baby Back”!  LOL

In addition to that, we had another milestone to celebrate!  Zane took his first step!  He did it a couple of times, but only one step each time.  Then, when his physical therapist came on Friday (the day before his party), we chatted about it and he suggested trying a few things, which resulted in 2 consecutive steps, then 3… then 6!  Yes… SIX CONSECUTIVE steps!  It was amazing, and this was with his PT who at one point wasn’t sure if Z would ever walk.  The PT was elated at Z’s progress and mentioned he really hadn’t expected to see that when he came that day.

A little more than a year ago, we were sad, we were worried and we were stressed.  It was definitely a low point.  This week life just feels AMAZING and we are enjoying every second of it!  I do feel badly because I don’t remember a lot of the details about my daughter’s milestones.  They were exciting, but they were… expected.  But, after everything that baby Z has been through, every milestone just feels AMPLIFIED!

I am also so excited because our friend’s who have a daughter with IS were able to come over, and their sweet little Savannah is now 6 months Seizure Free!  With as much as we’ve been through, they have been through 100 times more, so that news fills my heart with joy!  I can’t wait till we can celebrate her 1 year Seizure Free!!!

I never…

thought I would be so excited to see a baby make such a mess with their macaroni.  But, Z has a sensory issue and hasn’t been wanting to use his hands for any self feeding.  We’ve been working for months on this, and there have been more than a few tears shed (mine and his).  So when he reached his little hands into the macaroni all on his own and then licked his fingers, I was beyond THRILLED. 

Then, to see him reach his little hand out and grab the spoon and pull it into his mouth… well… again… beyond THRILLED!