She's Growing Up...

It happens.  We get older every day, we get bigger too and that usually means change.  If I could I would keep our Lu this size forever-but I can't!  Our precious Lucia is growing up.  The month of March and beginning of April had a few little bumps for Lu.  Our family caught the ole cold, a cold with the worst cough! Lu always suffers the most with colds as she isn't able to clear her lungs and cough as well as we can.  She also had uncharacteristic vomiting, an earache, then a urinary tract infection and another cold!  But April is upon us and spring is beginning to sprout and with that comes warmer weather and the end of cold season. Compared to many of Lucia's friends her winter was mild.  Many were in and out of the hospital for pneumonia, dehydration, surgeries, seizures, aspiration and other serious complications.  Our heart aches when we hear her friends are so sick, over and over and over again...  When Lu does get congested I use her compression machine to help her break up any junk in the lungs.. 20 minutes 2-3 times a day with her sweet pink and white vest.  Lately her machine had been sounding a little strange and not working so well, so I called for a tune-up and after looking at her file they decided she was due for a bigger vest.  Although it's still pink, bigger things just aren't as cute.    Ah well, with Lubird in it, it's just as beautiful.

spring 2014 with helper Scout

fall 2011

 This week she also got some AFO's (ankle foot orthodics).  Lu's little left foot tends to bend in and since she doesn't ever willingly bear weight, the foot needs a little help staying on the right track.  So, we have some sweet orthodics to help out with her ankle and help her bear weight with the goal to stand!   We'll give them a try and see how it goes..so far Lu does not mind wearing them, but I would prefer to just see her sweet legs and feet.  However, to see Lucia stand one day is a sight that would bring me to my knees with happiness.  A Hallelujah moment!  

new AFO's in her stander-good focus lu!

And on the forefront are some new eyeglasses.  Lucia has CVI (cortical vision impairment) which means there is not much we can do to help with her 20/800 vision,  as the problem is in the brain/nerve not actually in the structure of the eye.  However, she does have a bit of room to improve if she wears glasses- so of course we will try them out.  Lubird with glasses=scrumptiously delicious!

trying out new glasses, so studious 

A new vest, new AFO's, glasses and next on the list...drum roll...a supported seat with wheels!  A little hard to swallow but it's true.  We'll refer to as the Pink Stingray, or the LuBird ride .  This new ride is a special medical stroller called the Stingray.    Lu took it for a test ride from another student at the Anchor Center and it seems like a good choice.  This Monday the pink Stingray arrives!!! Lu will be properly supported, comfortable, and have a better view.  There was a time that I thought we might not need a seat like the Stingray, a time where there were so many unknowns on how she would be affected by PKS.   But no doubt she needs this and she will for a long time, at least for now.
And there's more ... next Thursday is an assessment for PRE-SCHOOL-wow PRESCHOOL!  A whole slew of professionals will visit with Lu at the Anchor Center and learn all about her. They'll listen to Jason, myself and some of Lu's therapists and teachers from the Center. I hope bird belts out with lots of her songs too.  Lucia's amazing home physical therapist, Grace Jory, is coming too.  Just having Grace there makes me feel so much better.  She is thorough, gentle, tough, technical, professional, an incredible advocate and all the while so appropriately graceful.  Truly a blessing having Grace in our lives.  One other little tidbit about Grace, she and Lubird share the same birthday-I know this connection was meant to be.  Thank you Grace for everything you do for Lu, for me, for all the kids you work with.

Grace and Lu

So onto the assessment and then a week later an IEP (Individualized Education Plan).  IEP, AFO, CVI , Stingrays...more than I ever expected to know..and we learn as we go, don't we Lu?!
So much change coming.  Praying, and hoping and dreaming that it all goes well.  The journey continues and our bird, with her new vest, her new AFO's, new shades in a stylin Pink Stingray will be on her way!  Bird you'll be so stylin! Bird you'll be so sweet.  Bird you'll be the cutest girl in school and on da street! Ta-weet! 

Thanks Courtney and cousin Imogen 'Mo' for visiting in March-loved seeing you girls!  Thank you Mario and Linda for the gifts from St. Lucia!

Mo, Marco, Charley, Hudson, Scout (Lu was at an Av's game with her daddy)

Court and Mo!

Scout and Imogen having a moment

This little Lubird is wise beyond her years.  Sitting fireside, legs crossed without a worry in the world...big or small, accessorized or not, we could not love this Lu more!