Little by little

Our beautiful little lubird has been seen by a lot of specialists in the last couple weeks. Her heart abnormalities have improved-yay!  Her neurologist wants to do a short EEG but was not alarmed by any activity that I reported-yay! And after another swallow study today- she is not yet ready to eat by mouth-little sigh.  

I had a hard time swallowing that- its not the fact that she didn't get the green light to eat orally and lose her button- but we watched her try soooo hard to swallow, to coordinate the process.   Watching her take a bite of yogurt, try to drink from a bottle, food off her pacifier...it was so much work for her and it was like a marathon for our little Lu.  Her tongue moving so fast, and strong, the determined look on her face, her little heart racing.. it just didn't come together as well as it needs to.   The Swallow Study shows us a live swallow using an x-ray and a barium formula that can be seen on the x-ray.  We can follow the swallow from start to finish.   When I gave her the bottle I was reminded of the first month of her life when she sucked a bottle beautifully, until we discovered that she was silently aspirating.  Giving her the bottle today, she was confused by the nipple of the bottle..she forgot how to drink, and it made me sad.   BUT- they said she had improved since her initial swallow study in June and the last one in September..and we'll repeat in about 4 months.  

Improvement is improvement and that is the good news.  Her heart, lungs, neuro activity, no sign of reflux, are all great, great news!!!   

In my yoga class yesterday, the instructor talked about focusing on the process' of achieving something-not focusing on the outcome itself.  The outcome can be overwhelming and not only that, but it can be out of our control.  Focus on the steps and the process, the here and the now...it's not destination its the journey.  The little bites, the food on the little fingers and tiny face,  the sensations, the fun in every moment right then and now!  Tomorrow we'll start giving Lucia little bites again to keep her interested and do one wee bite at a time, little by little..focusing on each little step of the way!  

Thank you Laura for going with us today and thank you Lucia for giving it your ALL! You continue to amaze us.  PS-  Lucia had a first today- a fall off the couch...mommy did not think she was capable of such a big move from the middle of the couch, over her boppy and onto the floor-but she sure as heck was.  No injuries, but quite a fright for mommy and baby Lu.  Once we knew she was ok, it was pretty amazing achievement!   Oh little Lu, we love YOU!