A room full of love

Hammond's with Christopher and daughter, Carly, Larson's with Kingsley, and Miles and Beth Bishoff

Our little Lu is almost 11 months old (will be on Monday) and the little Lubird is experiencing so much, as are we, in her wee little life.  This Saturday, we had a BBQ at the Larson's house and as my dad said in response to the picture above, it was "a room full of love".  4 kids all with special needs and special they are.  Christopher and Lucia both with PKS,  Kingsley with an undiagnosed condition and little Miles with Menkes Syndrome.  We all met at least one new family and we all loved on each others kids.  4 g tubes, 4 with oxygen, amongst other problems, and all 'just little humans that need to be loved' (geneticist Dr. Bellis.).  It was so sweet just watching these little ones look around, grasping their hands, telling their little stories, and not one single cry all night.  Wow, i just realized that not one of the kids cried, not even one time!  It was nice to be amongst friends like this, and to know that your child was not different in the way that you may feel sometimes.

Thank you Summer, Zach and Kingsley for hosting this special gathering.  We all hope to do this every month.

In other exciting news...Lucia, our little Scout,  is heading to camp on Monday!!!  Adams Camp,  www.adamscamp.org, is a week long intensive therapy program for kids that need some extra help.  This Adams Camp is an Early Start program (ages 4 and under) and it goes from 9AM-12PM Monday-Friday.  I'll stay on site during the hours and I pray, pray, pray and our little girl stays awake to get the most out of it.  4 Therapists (PT, Speech, Music and Occupational), 1 volunteer, and 4 kids, per group.  This Adams Camp only happens 2x a year-March and October.   I told the physical therapist (assigned to Lu this week) that although I do believe in miracles, I'm not expecting miracles, (but if one happens-bring it on!), we just want to do what we can this week.   Our goals/focus are: sit and roll on her own, lift her head while on her belly, and work on her eating.
Regardless of how far she gets with her goals, every little bit helps.  Maybe they'll figure out a technique to help her improve her muscle tone, or introduce a toy that she'll want to reach for, or uncover tickle spot that makes her giggle and move more, or they'll just discover a way to help her coordinate her skills.  We know she has some mad skills, we just need to help her express them!
Lu has been tending to sleep during many of her therapy sessions-especially the mornings, so I'm just asking God that she is alert and able to have tons of fun this special week!
Thank you again Larsons for Saturday night, thank you Keri Finch for telling me about Adams Camp.  Thank you Shanna Desch, Rachel Brand, Tate Foster, Naomi Trojanowski, Andy Hicks and Nathi Mattos for purchasing Lucia Light T-shirts! Thank you Lala for giving Lulu her first mani/pedi!  Thank you Noni for a new spring dress and grammy for lots of toys! A BIG WAY TO GO to Shelby Holmes (PKS age 3 1/2) for taking her first steps in her walker!!!!!  And congratulations to the Shreiners on the birth of their new baby boy, Witt!

lu checking out her pretty new manicure!