I DO have other children. They are fairing well through this whole chaotic situation. We've tried to keep life as normal as possible with only a few hitches in the schedule. They are keeping Grandma Hall on her toes, but love having her here. Here they are.........my beautiful children 'cleaned up' for Thanksgiving; I didn't ask them to do this so it was a nice (and funny) surprise.

No shoes necessary; and Sean's case, no shirt either. Bring on the redneck jokes!

Pictures of our new normal --
Amanda's fancy tent-bed. She is quite the mover and shaker these days and for safety reasons we zip her in at night to keep her from climbing out unassisted.


She has had some fun visits with many therapy dogs. This is Cooper --
Her days are busy with speech, occupational, and physical therapies.
Maggie came for an extended afternoon visit last weekend and she spent some time reading with Amanda and just keeping her company.

Slow and steady wins the race.............and Amanda IS winning!

It's been three weeks.........three long weeks since I've heard my sweet daughter's precious voice. I lie here tonight snuggling next to her trying to quiet her restlessness and just be in the moment with her; trying to ease her confusion and frustration as to what happened to her. Does she truly understand? How can she; I still don't. I cry silent, hot tears lying next to her. What is she thinking? I wish I knew. I wish I knew how to reach into her fragile body and turn her voice back on, push the ON button for swallowing, and give her the strength to control her body without the aid of a walker.

She HAS come so far in these three weeks and for that I AM THANKFUL. I am thankful that she is a fighter with an independent spirit. I am thankful that she is making small improvements daily. I am thankful that she still works hard when her little body shakes with ataxia and is telling her to be done. I am thankful THAT SHE IS HERE!

And I am thankful for everyone of you out there who is sending prayers and well wishes to Amanda and our entire family. That is just the start of what I am thankful for. For years everyone has made fun of me for crying when I say what I am thankful for when we say grace before our Thanksgiving feast, well this year I will be crying again so pass me a tissue and tell me what YOU are thankful for.

Happy Thanksgiving!

A week of therapy......an AMAZING week of therapy.....and Amanda went from being able to hardly stand without complete assistance to walking with a weighted down walker with a little bit of support from me.
She's working hard at learning to use her mouth again. Still waiting on a smile and sound as well.


Core balance (gee, maybe I should be working right beside her!)
Working hard in the stylin' thera-togs suit

Bean bag toss and getting a workout

You've come a long way baby! Mommy is so proud of you.

Monday was full of hustle and bustle for Amanda......her peaceful slumber was disrupted this morning by a nice warm shower.

And then after a little rest, the physical therapy ladies came by.....I'm almost positive that her expression means YOU'VE GOT TO BE KIDDING ME! She did make it a few yds. down the hallway assisted with a walker, but she had to ride in the wheeled chair with the therapy lady back to the room; she was just too tired. I'm so proud of her.

And then this afternoon she received a beautiful prayer quilt from our friends at Good Shepherd...I'm so amazed by the thoughtful generosity. After a short, wakeful time where I read her a story and talked to her for a bit, she cozied up under the quilt where she was literally wrapped in prayer. (of course, this was after she managed to pull our her NG tube for feeding and get a new one put in)

FIGHT SPUNKY MONKEY FIGHT!

ONE MONTH AGO.....she turned EIGHT; a spunky smily girl full of smiles and surrounded by presents.


Today she is surrounded by wires and prayers. And I'm searching for my spunky smily girl.


No matter what I'm right by her side......

SHOWERED WITH LOVE
That's what this little girlie is --
and this doesn't even begin to show the extra cards from assorted classes at school and theatre friends, more gifts that we are saving until she wakes, and the silent prayers that everyone has held in their hearts.

These next two pictures are from Tuesday afternoon, post op. She handled everything well; she is having a hard time waking up completely from the anathesia but she is responding to neuro-assessments and will nod her head slightly to answer questions.

her sweet little face was a bit swollen and she battled a temperature for a while too. I know she's a fighter; I just don't like her looking like a boxer.
And here she is today -- looking less swollen but still trying hard to wake up. So hard in fact that her thrashing and tube pulling got her strapped into these arm things the nurses like to call 'No-nos'. Basically they are soft and don't let her bend her arms to grab at things; a lot easier than the constant "NO, NO hold your animal" that I said all morning.

GREAT NEWS....the neuro-surgeon reviewed her post-op MRI (from today) and it looks great. He doesn't see any more tumor and said he will have another radiologist review it just to confirm. HALLELUJAH!!!!!!!!
Next step, pathology results.
For now, I long to hear my sweet peanut say 'I'm hungry!'

Monday - November 2, 2009 --- a quiet, restful day for Amanda. Her ICP pressure was down consistently so the 1st surgery was a success. She still has pain and doesn't want any TV noise or much light, but she is eating a little and is being showered with loads of love and prayer.

On Sunday, CHOC has a radio station that they run in the afternoon (& a couple of times during the week). Amanda got a visit from the Radio Lollipop folks; they brought her gifts and crafts; she enjoyed watching the radio show on the TV and seeing the volunteer prank call down to the station from her room.

Today, another surprise visit........from the therapy dog, Missy. She is a 2-1/2 yr. old Sheltie who is just the sweetest, most gentle little dog. Amanda was quiet but just loved it. The dog liked licking Amanda's hand and Amanda just pet her a lot. (she REALLY misses Fritz)

And this picture is of the huge basket of yummy goodness that she got from family in Ohiothis is just a little taste of the unbelievable cards, letters, pictures, gifts, and FOOD that we are receiving. Our family is very blessed to be surrounded by such giving people.

At this point, we are going to need a small U-Haul just to get it all home.