Let's get this party started!

new outfit and hoodie from aunt courtney and uncle jonney, boots knit by Monica

Happy New Year!  An end of beautiful holidays and a beginning of a new year and with that many possibilities including new resolutions, new beginnings, a clean slate and new goals!  The month of January marks about a 'six month follow-up' month for many of Lucia's doctors, therapists and more.  We have about 2-3 appointments every day this week, starting Monday ending on Friday (I may have gotten a bit overzealous) and I am looking forward to every single one of them.  Lucia seems to have good health for the most part.  She is doing well on her oxygen, hasn't caught a bad cold, and her pulse-ox shows that her oxygen and heart seem to be going strong.   I'm excited to see and hear what the doctors have to say (hoping good things) and to just get a fresh report on our little bird.
Lungs, Heart, Gastrointestinal, Hearing, Neurology, some Therapies and a few more this week will give us some of our baseline for 2012.
We hope and pray for the BEST!

Most of the doctors that we'll see this week will tell us what they see physically/structurally..  We know that as Lucia gets older her development and milestones will start to grow further apart from her peers and therapy helps but we like to have some control over her internal organs, hence all the doctor visits above.  There may be 'fixes' for those- hearing aides, medicine, oxygen, maybe even some surgeries..but her hypotonia (low muscle tone due to brain not communicating what to do to the muscle) is pretty incurable.  There is no 'Tone Doctor' unfortunately...someday I pray and so many pray that there will be..  Her brain function is not in our control.   Imagine not knowing how or why to 'reach' for things like toys, or how to swallow properly, or how to focus your eyes to work together (even eyes have low tone!!!), or your brain not telling you what you see,  how to bear weight/ push up on our arms or legs, even how to cough properly!  It really stinks to have low muscle tone, completely blows, it's just not fair...BUT that is what we have to work on too, and work on that we WILL Little Lu!

SO... Let's get this New Year 2012 Party Started!  Let's go visit our docs, and talk about therapies and let's start with helping this girl learn how to eat!  I am determined to teach my little Lubird how to take little bites of food from the front of her little lips over her sweet little tongue, carefully down her throat and down into into her TUMMY.  She gets excited and starts to take food or even her pacifier and she ends up not swallowing fully.  She takes it in, maybe swallows but then keeps looking for more food with an open mouth and ends up almost in a choking like pattern/or that is how is appears.  She is not truly choking but her heart rate skyrockets and she is not in an enjoyable state... Not swallowing properly can result in food or liquid going into her lungs/aspirating.  Aspirating (caused by low tone) can be so dangerous and the swallow process is scary for Lu and that is the LAST thing we want to happen.  We don't want her to have ANY aversions to oral eating..because then she won't try.  So our New Years Resolutions/Goals are to teach Lucia how to eat and maybe even drink.  Thinner liquids are more difficult to swallow than thicker so eating pudding type foods first and then hopefully move on.  We don't mind the g-tube/button but we want her to enjoy food by mouth and eventually she can eat foods in her cute orange high chair from her auntie lala and kimmy!!!
We love this girl more and more and I swear she is prettier today more than she's ever been.  We love our girl- let's say it again-We LOVE this girl named Lu and we are excited to kick off the New Year of 2012 with goals, good doctors, good family and friends.  So...let's get this party started in 2012 and get our little girl off on the right cute, chubby and soft, so soft foot!  We can do this Lu!
Let's swallow and have fun eating together- God knows we LOVE to eat...too much of course..but we want to share this experience with our child!  Slowly and surely we hope to get her there!  Little bird bites for our little Lubird.

If someone can pass Lucia's swallowing resolution on to Tebow that would be appreciated too :)  Thank you Parsley family for a great dinner on Friday night at your home with your special family.  Ela,  Giacomo, and families we are so excited to hear about your visit and can't wait to be a part of that too.  Thank you Lucia for giving us more smiles and giggles this week than EVER before!

Love and light and good luck with all New Years Resolutions!  2012 here we come!

lu with her new favorite play station from grandma Noni! Pretty outfit from my cousin Kim and her daughter Tigi

little lu!