Sunday, September 4, 2011

Little Friends!

Lucia has her own friends!  One special friend lives in Minneapolis, Elizabeth "Lizzie" Gold, who was born just 8 days before Lucia on April 18th and diagnosed at 4 days old with PKS.   Lizzie sent little Lu a care package this week- a pink tie-dyed onesie with a sparkly "L" on it, along with some other very cute girlie things.  We know Lizzie and Lu will have a face-to-face friendship one day, hopefully soon!  Lucia also has a boyfriend in Bologna, Italy named Giacomo Karol Gagliardi!  Giacomo was born 7 weeks after Lucia, on June 7th, and was diagnosed with PKS 3 weeks after birth.  We have just gotten word from his mom, Samantha, that something special is arriving for Lu from Giacomo.  Lu can't wait to meet you too, Giacomo, and give you a big kiss!  At just 4 months old, our little Lu has a best friend and a boyfriend! Thank you L & G!  Although we do not live too close and our babies are all under 5 months old, we are sooo happy to have your hands to hold on this journey together!
Handsome Giacomo Karol
Happy Elizabeth "Lizzie"

Eyes!  We went to the eye doctors on Thursday and he told us that everything looks normal, structurally,  and that Lucia will probably just take her own time developing her full vision.  We shared our concerns about her vision- doesn't notice anything peripheral, not always focused, eyes not always working together, sometimes twitchy movement, very small pupils, and he said there is nothing to do- he thinks that she'll get there- it just will take a bit longer.  Her low muscle tone affects her little blue eyes too.  Dr Arbuckle said "I'm a do-er.  I like to do things if I can to make it better but Lucia does not need anything done at this point".  So we were happy about that- you take your own time sweet baby girl.  

Looking forward to church tomorrow with Little Lu...her friends are in our prayers always- near and far. 

Thank you Ryan Smith, Rae Sandler, Brent Hedstrom and Luke Beatty for your generous contributions to PKS Kids!!  PKS Kids does sooo much research and awareness and without PKS Kids we would not know Lizzie or Giacomo!

xo
Posted by at

1 comment:

Denielle Johnson said...

I am so thankful that you are finding such wonderful people along this journey. I am so glad that I found your blog so that I can add my prayers and light filled thoughts to your amazing family. Thank you so much for sharing with such joy and love and openness about Lucia and everything that you are going through. My heart melts every time I see her cute little face! She is making such wonderful progress and I know that she is such a beautiful blessing for you and Jason. May your journey continue to be brightened by the love of new friends, good news and promise. All the best to you, Denielle (from PV front desk)

September 9, 2011 at 8:50 AM

Post a Comment

Subscribe to: Post Comments (Atom)