This post comes as an update, because we haven't shared one in awhile.  Not that there are many changes to report.  Though some who've seen her recently have commented that Celia seems to be "better" than she was a few months ago.  It's true, beneath her eyes the dark crescents of fatigue and dehydration are mostly gone, and giggles have found their way back to her lips!  She hasn't cried, hard-and-long-like-she-used-to, in months.  As much as "better" is relative, we'll take it. 

Celia is skinny.  Lean became slender and slender grew gaunt and although she lost a fair amount of weight over the course of several months, she's gained a bit back in recent weeks. She eats, on average, about a cup and a half of food a day - things like Grandpa Tim's maple syrup porridge and G'Ro's peach yogurt smoothies and smashed taters a la Aunt Sally.  There's really only one consistency she's able to swallow fairly safely now - cottage cheese and oatmeal are too thick, for example, and even thickened liquids are too thin.  She doesn't take anything by cup or bottle anymore.  Nearly every time we feed her she coughs and sputters some.  She takes several medications orally three times a day, and we try to combine those with meals.  Because she seems to be quite comfortable lately we haven't needed to give her regular doses of strong pain medication.  Her comfort, even in the car or in the stroller now, allows our family to be out and about more often, enjoying things like Music on the Lawn at our local library or short trips to the zoo or splash park.
Celia sleeps well these days.  She doesn't always sleep at night, but most of us who take turns sleeping with her are able to rest next to her because even when she's awake at night, she's content.  She spends most of the day resting, and occasionally naps.  She has no muscle control and lacks any voluntary movement, so we reposition her often.  Although her seizures seem to be under control, she often tremors and shakes and jerks.  Her body struggles to maintain temperature.  She doesn't appear to sweat, so has become overheated outside on especially warm days.  Inside, her extremities are usually cool and blue, but when Tuck isn't stealing them she has plenty of warm, handmade blankets to wrap up in.  She enjoys holding hands and being snuggled and hearing soft voices, and she frequently offers the biggest, best smiles.  Like these:


Anonymous said...

That may just be the most beautiful smile I've ever seen.

Christy said...

I could watch that video 1,000 times! Absolutely precious! I'm so happy she's comfortable and that she's able to enjoy getting out some. I know it's good for your family. Give her some love from us. Soak in the smiles.

zarniegall said...

Seriously precious...amazing what love can do...celia is so lucky to have you all...we are lucky you share her...she IS beautiful!!

Debi said...

Thanks for sharing her amazing and beautiful smile with us. So glad that she is comfortable and able to go more places with her family. Celia is one special and loved little girl that has touched and changed so many hearts already.
Praying for days filled with joyful memories.
Love and hugs and prayers,
ps. Same bloggy friend, new picture.

Vickie Gross said...

One can see how much love Cecilia feels by the beautiful smile on her face after the simple sound of your voice. She is soo blessed to have such loving parents and family...and we are all blessed to be touched her in our lives. My heart reaches out to you and your family:) THanks for sharing her with all of us!