catching up

bear with me as i catch up lia's story a bit. i've got about 2 weeks worth of posting that i have not finished. as i catch it up, it will go under this post until i'm current.

new reality

the new normal around here involves cords, and O2 again. after a good visit with lia's pediatrician, i explained what was still going on. we have ended up with a month's prescription of O2 and a pulse-ox to track her sats. so far, i've tracked her down to 83, at which point i stop and place the O2 on her. for now, we're supposed to place it on as needed. so i have to pay a lot of attention to her activity level and color.

since her ear infection cleared up, she has not had a repeat of the blue lips incident. her hands and feet do get dark after activity and towards the end of the day. looking at her x-ray up close, i can see the scarring and ground-glass look is still there. she has 1 full lung and .333 of the other, the right lung. her colon, liver, intestines, and stomach are all out of place due to the weakness of her diaphragm. it's paralyzed, and up to t-7, almost t-6.5. that's high.

the O2 agrees with lia. i put it on and she slows down her breathing, she breathes deeply through her nose. it helps her, i can tell. since wearing it, she has stopped sitting for 10, 20, 30 minutes at a time and playing. we are calling this her power cord. she is a different baby, pinker, olive, happy, calmer, active, in general a Normal Baby.

i hate that the O2 is back, i hate that we don't know what is going on. is it her activity? is this going to get worse? we're already at .25L, and that makes her a strong 93. up from 84.

answers, i just need a few of them, please.

finger food fiend

lia only eats so much baby food before demanding in a strident voice and signing 'more more more' to have finger food.

thankfully, there are Target brand puffs. mango, sweet potato, blueberry, apple, strawberry, and much cheaper than Gerber. i like budget items. i like feeding lia things that are good and cheap. making our own baby food allows me to spend on something fun like this.

self discovery

perhaps the best $20 we spent on a toy. it lights, it sings, it has a mirror. it can be a table, a stand-up toy, a lay-on-the-ground-and-kick toy. it's wonderful, and lia quite agrees.

on the good days, she will stand and stand at it. pushing the buttons, laughing when i sing the note back to her. she will spin the spinner with abandon. and she loves to look in the mirror. she smiles at it, kisses it, and thinks this little friendly hide and seek is all very very fine. i do too.

i placed her toy in the warm area, near the window-that-was-a-door. so the sun comes in, the puppy gazes fondly, and lia and zaya play with silly toys while i try to cook something useful in the kitchen. i'd much rather be playing. so sometimes i pull something leftover out of the freezer, count my blessings, and get on the ground to play.

heading up

towards the end of the day, lia is rarely willing to stand anymore. she is just too tired.

every now and then, though, she does. i am proud of her for trying, for continuing to push through the exhaustion and the effort it takes to breathe. monday we see the doctor again. i hope that there is an answer of sorts.

entertainment

i like having cabinets, and lia does too.

when we redid the kitchen, we found a cheap place to get good cabinets. i went from one drawer and one under the counter cabinet to enough drawers for zaya to have his own private drawer. soon we will have to make a drawer just for lia. until then i allow her access to the container cabinet, it has all she needs to entertain herself.

recipes for love

mix together, stir well,

drink the laughter,
save the tears for later.

follow me

now that lia is mobile, she follows zaya around.

sometimes zaya and i talk about following. about how lia will want to do everything that he does, be it cars and trucks, or attitudes. so sometimes zaya will say to lia, 'lia, you have to choose a better attitude', or 'lia, i'm sorry i made a bad choice'.

hero worship comes in all forms, and can be damaging as well as useful. now that we navigate these more uncertain waters, it's hard to find parents with older children that i both relate to and would want to emulate because they all have healthy children. the blithe assurances and statements made about prayer and faith in the face of doubt and fear are sometimes hard to accept.

it is not that prayers and assurances are worthless, it more often feels as though the statements are made from solid ground. while i, i remain on shifting sands. trying to find the sure, the true, the remnants of hope and solace. these are not bad times, these are just hard times, and they call for endurance. i hope that i meet the test, and will someday be an example of something good and true in the future. more than that, i hope that no one will ever need that example. that they rest firmly in the normal and the expected.

chimes!

while at the RMH this past weekend, i sat down to play the piano that they have there. while lia was in the hospital i would pass it by, but i never touched it. even though i love to play the piano. i would make melodies in my head, i would hum them to lia while i would sit by her bed. i'd fold myself awkwardly around the warming bed and touch her head, her hand, her foot, whichever spot was untouched by wires. usually only one of those spots would be so at a time. i could never sing, my words got tangled, my voice would become tattered. so i would just hum.

as i sat there and played, dave listened, and zaya played with the trains. when i was finished i turned around and saw lia sitting on the floor right behind me. dave told me she sat there the entire time. lia loves music, and i will add that to her list of things she loves to hear.

the first thing is still windchimes, they make her laugh.

connection

there really is something special between these two. i know it's said about almost any sibling group. it was certainly true about my sisters, brother, and i as well. it's still endearing every time i see it. while we were packing up at the RMH, lia sat on the floor in our room as we packed up. zaya was bouncing off of the walls and in general being a 4 year old boy. lia looked over at him and made a growly noise just like he always makes to her.

she intently looked at him and kept making the noise until he stopped and made it back. pleased with herself for initiating conversation, she then looked at me and made the same noise. i made it back. she giggled. dave came back from putting things in the truck and i told him what she did. so he made the noise to her, and she responded.

much to her delight, everyone kept trading off growly noises with lia the whole way home. she knows how much she is loved. i think zaya is proud of himself for teaching her a new noise.

all day today lia continues to make that noise, attempting to entice conversations from us with noises. she has added a 'coo-coo' noise as well.