Friday, February 23, 2007

Her Own Story

Aloha! I know I've been missing in action for quite a while now. I was just getting my legs back under me after our journey to Dallas, and then I accompanied Ray to Las Vegas, where he had a conference. My mom flew in from Oregon to keep the kids for us so that we could get away together, the first time since Abbie's injury. What a blessing! The chance to sleep in a little bit and operate without a set schedule was a wonderful break. We returned home last Wednesday afternoon, in time to welcome houseguests that evening. That week also brought Dr. Tennant back to Hawaii to lecture and teach. To say it 's been a whirlwind...well, I feel a little like Dorothy at this point.

To catch up on Abbie: Dr. Tennant and I came to the same conclusion on the same day. Abigail Faith is going to write her own story, and perhaps in retrospect we will understand it all. We are walking a path not traveled before -- no one has ever tried to heal an anoxic brain injury using the methods we are employing. So, we keep track of her voltage, track her progress, and note indications of change, but just when we think we know where we are going, Abbie throws us a curveball.

In some ways, though, it is much easier not having a path to follow -- there are no parameters, no targets to meet, no timelines. Mentally, this really gives me a break and allows me to sit back and be a spectator to what is unfolding in Abbie.

Abbie is currently on day 3 of Omnicef for an adenoid infection. She spiked a fever last Wednesday, and by Friday was sounding like a full-grown pig rooting for its dinner. There wasn't a whole lot of sleeping at night for her or me. During the night on Friday the congestion in her sinuses seemed to be really interfering with her breathing, so I called our beloved ENT on Saturday morning. She squeezed us in and ran a scope through Abbie's nose to find swollen adenoids with some blood on them. Abbie is feeling better and sounding more like a piglet these days than a full-grown porker.

Although she is still on oxgyen we took her to school today. She and I had a conversation about it at 4am, where she was very clear about her desire to go. I am glad we went. After a brief catnap Abbie perked up and did well with her switch. She and I had a good time during "recess" as well. I had her sitting right in front of me as we played with a vibrating frog. I turned it off and put her next to her. I asked her to find it and turn it on. She quickly found it visually, and after I'd reassured her that I'd hold her if she used her arm, she lifted her arm up to turn it on (I helped with the aiming a bit). She did this a number of times when we asked her. It may sound minor, but it's new, and that's what counts!

Our houseguests, John, Donna and Sarah Belew, journeyed from Georgia to spend a few days in paradise. I remembered John as the "new lieutentant" when I was at Fort Lewis. The fact that he's now a major makes me feel old. John has regularly posted encouraging and strengthening messages at Abbie's site, so I was excited to see them. One evening he asked to hold Abbie as we talked. To see someone else love your child so tenderly is overwhelming. To me, it reiterated that we've never been abandoned, never been alone. John holding Abbie was the literal picture of how she has been carried all this time by hands not our own.

The Lord often teaches me lessons in short phrases of four or five words. I suppose it's because he's well aware of my limitations. This week, though, perhaps because I've been stretched so thin lately, He's down to just one word. His word for me is "remain"! I was reading John 20 and noted that Mary remained at the tomb after John and Peter left. Because she stayed Mary was the first to see the resurrected Christ. That same day I heard a message about how a tree in winter just stands there, looking as if nothing is going on. But, because it remains, spring comes and it blossoms. So, I am grateful that my current assignment is just to remain. He is not telling me to walk, fight, knock, proclaim...for now I stand, resolute but still, waiting for the spring that I can sense moving in.

Monday, February 05, 2007

Looking Ahead

Near the end of our trip to Dallas. I like this picture because it says much to me about what is going on inside Abbie – looking out, waiting for tomorrow, patiently hoping, quietly knowing.

We got the lab results for Abbie's hormone tests late last week. As expected her cortisol levels were very high in each of the four samples we took (four different times of the day). Dr. Tennant wrote that there's not much we can do about this until "the injury heals". The initial let-down in my quest for a "quick-fix" booster was quickly counteracted by a re-reading of his message. Until the injury heals...we are now approaching her care with that end point in mind...a healing of the injury! There is also an issue with her TSH being very high, yet her having normal thyroid levels. Apparently, this can indicate a problem with iodine loading, so we'll also be testing that soon. Abbie's DHEA levels were very low, and this hormone is especially needed when cortisol levels are high. In doing research I've found all sources recommend that DHEA supplements not be given to children, but then I found this revealing summary on MedlinePlus,

Children (younger than 18 years):
The dosing and safety of DHEA are not well studied in children. In theory, DHEA could interfere with normal hormone balance and growth in children

So, if the biggest theoretical concern is that DHEA supplementation could interfere with normal hormone balance, then this certainly doesn't apply to Miss Abbie who is nowhere close to normal right now. We're getting pretty used to researching things "not well studied" and I'm sure we'll be able to come up with a prudent approach for this as well.

I am actually running out the door right now to go see my friends Remle and Jim -- please pray for them! The whole story is at . Jim is fighting colon cancer, and after surgery last week found out he is stage 4. At times like this I plead with God to use every ounce of what He's taught us over these past few years to help me minister to others finding their way in the dark.

Abbie's Hands

These are Abbie’s nice soft hands. Exciting for two reasons: her hands are relaxed and in a good position, and the tone in her arms is low enough to allow her to keep her hands together easily. Again, this is something she could not easily do last month.

She is also getting stronger, and sometimes I have to consciously remind myself that what she is doing easily now used to be impossible. The other day I was pulling her to a sitting position in bed and her head did not lag at all, she just pulled it right up with her body. When we were at the park last Saturday she was sitting between my legs facing out – after a while I noticed I just had my hands near her, to catch her “just in case”, but she was sitting up on her own.

Getting Readjusted

I found this on the front porch of the home we stayed in while in Dallas. We normally entered through the garage, so it was a week before I opened the front door to find this amazing message – on one page I had the reminder to believe, and on the next page the reminder that love always wins! He has always prepared our path long before we walk it!

I apologize for being late in getting a “Post-Dallas” update written. Last week was a whirlwind of activity and readjustment. We got Abbie’s long awaited stander on Tuesday. There were some other pieces of equipment that we’d also been wanting to get for Abbie, and they all arrived on the same day! It was like Christmas in January. She looks wonderful in her stander, and we can now truly see how long her legs are – she really is a ballerina-to-be! We also got a special needs stroller for her. What a blessing! I recently purchase a carseat for her, in case we needed it during our trip. So, now we can go out and about without the clunky old wheelchair.

We did just that on Saturday, when I took her to Waimanalo Beach Park to watch RJ’s baseball game. That park, I still can’t decide if the patch of land was stolen from the sea, or given up by the mountains, and I marveled that we got to relax in such a beautiful spot. Abbie enjoyed being in the sun and meeting a new puppy. She was quite upset at the potluck, because she is so frustrated. Although I know it is a good thing, it still hurts my heart to hear her cry!

Last week almost marked Abbie’s first day of “school”!! Her two-day-a-week program at the University of Hawaii began on Friday. Her favorite things were watering the plants (she grinned as soon as she saw the dirt), and singing the songs. Three hours is a long time for Abbie to work hard, and she was exhausted when she got home. But, last night when putting her to bed I told her she needed to get to sleep to be ready for school, and down came the eyelids. She really enjoys it, and I am excited to see how she will develop over the next few months! I am also happy that we are part of a training program for future therapists, so that when they graduate and are working they will be very comfortable and confident in working with kids like Abbie.

We continue to see small signs of the work that is going on inside Abbie’s body right now. I will often catch her chewing now, bringing her bottom jaw completely up to her top and clicking her teeth. She couldn’t do this a month ago. Her vision is also improving to the point where today there was confusion about which was her good side. She always sees much better to the right, but today she was consistently looking, and seeing to the left.
I am going to post a couple more updates because I can't seem to get the pictures to go where I want them if I have more than Blogger professionals...Help!!