Thursday, June 28, 2007
This afternoon, Ali's speech therapist came by to work with Ali and evaluate her ability to swallow formula and food. Deb, our speech therapist dipped Ali's pacifier in formula an gave her a taste, and then dipped the pacifier in some baby food. Ali was surprised by the new flavors. She also did some work on a bottle.
Deb's evaluation is that Ali is protecting her air ways; that is, Ali reflexively does not allow food to go down the wrong pipe. But this is all very new and Ali will need to practice this for awhile before it becomes a regular way of eating. What's cool is that Ali was able to do this on the first try.
And she went in there and blew their minds. Ali has settled down quite a bit over the past several days and we've been using her quiet moments to do the exercises we've learned both in San Francisco and since we've been here in Eureka. And Ali is responding well. And the physical therapists are impressed by the improvement in her range of motion and relaxed tone. These are so necessary for Ali's rehabilitation.
The reports that were sent up here from San Francisco did not offer the medical team up here much hope. But the team here says the person described in the reports and the little Ali person they get to work with are two very different people.
The folks here really have made Ali rehabilitation their mission in life.
Tuesday, June 26, 2007
Ali is one year old today. Her mom, Grandma Yolanda, and Aunt Camille will all arrive on Friday to spend the weekend with us and have a little birthday party.
We snapped these pictures this morning, and right now, Ali is sleeping in the bouncing lap of the charming and beautiful Susan.
Monday, June 25, 2007
Ali's feeding machine is battery powered and can be stuffed in a little custom made back back. So while the charming and beautiful Susan walked around Target and shopped, Ali and I sat in the little Starbucks that's in the Target store (how cool is that?) and sipped coffee. Me, not Ali. I can't imagine Ali on caffeine.
(I'll update this post with pictures tomorrow. Right now, the camera is in the room where Ali's sleeping. I'm too oafish to slip in the room quietly without waking her.)
Friday, June 22, 2007
Right now, Ali is up and the beautiful and charming Susan is trying to get her to sleep. Ali's about an hour overdue for night-night. Today has been the best day yet for Ali. She's been agitated very little today. Your prayers are definitely at work.
The best time to work with Ali or do therapy with her is when she is not agitated. When agitated, she has too much adrenaline pumping and she's not able to learn. Her brain needs the down time to rejuvenate and reprogram. So this is how you can pray.
Thursday, June 14, 2007
Susan has nested for two days and Ali is nestled snug as a bug in her crib. Ali sleeps much better there, it seems, than she did in bed with Susan. Everyone is getting more sleep around here. Fortunately, none of the bedrooms in my sister's house share adjoining walls so that even when Ali is squawking, no one else in the house is really disturbed.
I get home to Eureka, CA, about every five years or so. When ever I do, I chow down at the Hole in the Wall where the best sandwiches in the world are made. I don't know what makes them so good. Maybe it's the Humboldt Bay Sourdough bread or small town pride or Northern California organic ingredients or simply magic mushroom induced creativity. I'm not sure. But I'd eat there five times a day if the budget and/or the charming and beautiful Susan permitted it.
Wednesday, June 13, 2007
As Monday unfolded, it became evident that small details were overlooked. That set us back a little. A few last minute phone calls and a few more visits from product and hospital representatives were made. Then we were finally able to leave.
Now there's the six hour drive from San Francisco to Eureka. Little Miss Ali hasn't had to stay in one place since she woke up from her coma. She did not take to the car seat well. Ali punished our sin of putting her in that car seat with a major poop explosion. The biggest one of her life. The charming and beautiful Susan said that the car seat scared the poop out of her. But the front passenger seat of our little Pontiac Vibe folds forward into a sweet little changing table so it all worked out. But it did take two of us to change her and get her cleaned up.
The next big challenge for us, well the charming and beautiful Susan (I was only
driving), was feeding Ali through her G-tube without a machine. Susan had to plug a huge syringe into the port of Ali's g-tube and gravity feed her 7ml every five minutes until Ali got a full 75ml while driving up a curvy highway 101 through the Redwoods. The beautiful and charming Susan got to accessorize her ensemble that day with blotches of baby formula. It was quite a fashion statement.
Every loose end in San Francisco or Florida was magnified a thousand times when we got to Eureka. We had to maintain a Ali's strict medicine and feed schedule, set up new digs, and put out a few fires I left smoldering back at the office. Picture bringing home a new born and setting up a nursery all on the same day. Now add setting up the mommy's room, too. Got the picture yet? One more thing: add a special needs baby to the mix. That's not scary; that's insane.
So keep those prayers coming. We've been in Eureka since Monday evening and we're starting to see a routine coming into focus. It's all about the routine. Here are our goals for this week: 1. get Ali to sleep in her new crib, 2. meet with new her new pediatrician, 3. meet her new physical therapist, 4. finish unpacking, 5. get some down time for the charming and beautiful Susan.
Ali was hostess to a visit from her Grandpa Jim and Aunt Camille from Florida. It's been a few weeks since Grandpa Jim has been able to visit. He notices incredible improvement in Ali since the last time he was here in San Francisco. Aunt Camille arrived with an armload of gifts from Ecuador for little Ali. She fell asleep comfortably in Aunt Camille's arms while she rocked and hummed to little Ali.
Little Ali has brought together two families that would probably never have crossed paths. No one ever knows what lies just around the next turn. All the planning in the world can never adequately prepare anyone for the plot-twists in our life's story.
So how do we get through it? How do we set ourselves up to properly face the future?
"He is like a man building a house, who dug deep and laid the foundation on the rock. And when the flood rose, the stream beat vehemently against that house, and could not shake it, for it was founded on the rock."
Matthew 6:33, 34
"But seek first the kingdom of God and His righteousness..."
"...do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble."
Saturday, June 09, 2007
After living in South Florida for the better part of twenty years, I can identify with southern boy Mark Twain when he said, "The coldest winter I ever saw was the summer I spent in San Francisco." It's been sweater and jacket weather every single day. Even in the middle of the afternoon, the temperature rarely rises much higher than the sixty degree mark. A cold winter day in Florida is rarely as cold as an average San Francisco summer day.
Monday is still our big day; Ali will be discharged.
The incredibly efficient Nurse Kathleen has rescued us from being drowned
under a deluge of state and local government bureaucracy. The cogs of the inter-office machinery has threatened to slowed our departure. But Nurse Kathleen and Hospital Social Worker Stephanie have greased the wheels. They've trained, prepped, informed, and provided us with services and resources for the next phase of Ali's recovery that commences when we leave Monday afternoon.
Hospital Social Worker Stephanie spearheaded a meeting that included experts on Ali's recovery from head to toe. Literally. Neurologist, speech therapist, gastro-intestinal specialist, nutritionist, physical therapist, social services and general medicine were all represented. Head to toe. Hospital staff are treating us like heroes that have rescued Ali. They want us to know that we have their full support.
I apologize for the amount of time that passes between posts. Internet availability at the hospital has been dismal over the past several days. This post and pictures come to you from a little coffee shop a short walk away from the hospital where, with coffee, you get free cream, sugar, and wireless Internet access.
We've settled into a routine here. Aaron went home Wednesday and I moved into the hospital room with the charming and beautiful Susan. And Ali. We take turns holding and loving on her, I run five or six miles through Presidio Park every other day (there's a cool trail that winds down the hill toward a beach on the mouth of the San Francisco Bay, just west of the Golden Gate bridge), walk to Starbucks, do laundry at a coin operated laundromat, and eat food from the hospital cafeteria.
Sunday, June 03, 2007
I stared at this beautiful sight all morning. I know I've written that she has come so far, but I just can't say it enough. I remember the condition Ali was in a little over a month ago. It was bleak. I wanted to be faithful an hope-filled, but I was crushed. 10,000 pounds sat on my chest and there's no amount of hope or faith that could budge or bench press five tons. But thanks to the fervent prayers of faith-filled friends, that bar-bell began to levitate. It was like Samson was my weight lifting buddy.
This is how the doctor found me this morning when the charming and beautiful Susan was in the shower. Laying next to Ali. The doctor on the floor today was the same doctor that was on the floor the night the ambulance brought Ali in.
The night Ali wasn't breathing.
The night the world was flipped upside-down.
This doctor met me a month ago with the most sobering discussion I've ever had. Ali was in a coma, a machine was breathing for her, and Ali could not maintain her own body temperature.
This morning when the doctor came in, there was a smile on her face and we talked about Ali going home. We talked about the necessary preparations and arrangements and the action items for this coming week. What a difference a month can make. I wonder what next month holds in store for us and Ali.
Saturday, June 02, 2007
Susan was able to take a walk outside with Aaron while I lay with Ali in bed. We stared at each other until we both fell asleep and took a short nap. This was the charming and beautiful Susan's first venture out of the hospital since Tuesday.
When I walk around with Ali or hold her and rock her, I sing this pray over her:
Lord, prepare me to be a sanctuary
Pure and holy, tried and true
With thanksgiving, I'll be a living
Sanctuary for You