Let's dance!

working on sitting

We are over halfway through our week full of activities and it's been productive, informative, and somewhat inconclusive but pretty good!

Physical Therapy bright and early Monday morning, however, Lu was not feeling so bright that early! Lu slept through over half the hour BUT for the first part she tolerated some tummy time and some assisted sitting.

Pulminology tested/monitored Lu's oxygen levels and concluded that Lucia is doing well on 'room air' when she is awake- meaning no assistance needed from oxygen!  So, Margarita gave us the approval to take off or turn off her oxygen during the day while she is awake, and add back when she is napping or asleep. GO Lubird! She examined her and thought she 'looked good'!  We love those comments from her docs!

Tuesday morning I had my CNA orientation to be Lucia's CNA- so now I'm employed for some of my care for our sweet Lu.  There are only 3 states in the country that allow parents to be 'Parent CNA's" so we are fortunate to be in one of them!

Tuesday afternoon a hearing test and ENT.  Lucia passed her left ear for the hearing test but the right is still inconclusive-(probably due to wax or fluid in the ear) We'll give her some drops to  (just remembering to do that now-whoops) to help loosen up her wax in her wee ear and then we'll retest in a few weeks.

Wednesday we met with both of Lucia's therapists- Physical, Occupational and the case manager to do a 6 month assessment and to set up a new care plan.  We hope to add a Speech Therapist to her care to assist with oral skills and also feeding.  Lots of questions were asked- what is Lucia doing now, what does she like to do, what are your goals for Lu for the next 6 months...   She is sometimes tracking, rolling a bit from back to side, holding up her head pretty well, loves to bathe, loves her mommy!  She does!  She loves me and I'll position myself close in front of her and she will giggle and smile at me at least 1 time a day!  LOVE!  Some of our goals- sit unassisted for 1 minute, eat or learn how to swallow,  reach for objects in front of her, and teach the dogs to stop barking at all her therapists/visitors when they come over :)

We reviewed her last goals, from 3 months ago,  and she is doing pretty darn good.  Every bit of progress is a celebration in our house and anticipating many reasons to celebrate I just signed up for an automatic weekly delivery of champagne (not really but sounds like a great idea) :)

Tomorrow we have Cardio and GI, then Friday Neurology.  We have seen some episodes of interest that we need to talk to her neurologist about...hoping they are not serious..  Next week we are doing another Swallow Study and upper GI xray to see what is going on with her swallow situation.  We also go see her ortho, Dr. Benson-YAY- we love her!  and then some later...

So,  so far...pretty good.  I heard one of the most beautiful things I have ever heard this week from Lizzie Golds mom (Lizzie is Lucia's PKS friend-same age as Lu- born in MN)

Her mom said:
 "Lizzie visited me during my yoga mediation (she was on a retreat) and in my meditation/dreamlike phase Lizzie was dancing and holding my hand.  I said, stunned, 'Lizzie You're Dancing!!!!'  Lizzie looked at me and said, "Mommy, you don't have to have legs to dance, or ears to hear or eyes to see." and then she took off flying like a beautiful eagle, and I flew up with her as a hawk.'

Lizzie, you are soooo right and smart and beautiful..dancing, seeing and hearing are different for each and every one of us- and are in the eye of the beholder.  We will hold you girls forever and ever and help you dance your life through happiness and love.  Let's dance Lu, Lizzie, Giacomo, Simon, Shaw, Kingsley, Stuart, Spencer, and Reese, and EVERYONE!

Let's dance and love and dance some more!

Thank you Linda for going to our appointment yesterday- was great having you there.  Thank you Aimee for your nice card, and Taryn and Monica for your messages.  Anna- BIG hug goes out to you and some delicious pastries too. xo :).  We send hugs and kisses to my mom on her getaway-Pura Vida.  We also send sweet Davey, AKA the beast, or the rabbit, kisses in doggie heaven.  We miss you so.  And And God Bless or God Blessed You Lizzie for sharing such a beautiful, beautiful FACT!  XO

on table at pulminologists-