Thursday, May 15, 2008

A Precious Request

Tuesdays have become the highlight of my week, with Maria's morning visits to look forward to. Usually, she works on me first while Abbie is eating, but this week I had to be at an orientation for the twins' new school at 11, and didn't really want to embarrass them right out of the gate by going down with crazy hair, sticking up and coated with massage oil. So, instead I got to spend over an hour at the kitchen table with her, picking her brain about everything we never have time to talk about.

We had a brand-new nurse on Tuesday, who turned out to be wonderful, but Abbie didn't know that at the start of the day. I left her working with Maria, and by the time I got home, Maria was gone. The nurse was very impressed both by Maria, and what Abbie had done with her, but it would be evening before I got the whole scoop.

Maria called and said, "The most amazing thing happened today, as I was getting ready to leave, Abbie spoke the words, 'Don't Go'!" I was so surprised and asked the nurse, 'Did you hear that?' She said it did sound like words. I think it even surprised Abbie, to have the words actually come out. So, of course I couldn't leave then. I put my bags down and talked to her until she went to sleep. There was little teddy bear on her bed, so I put him on her chest and talked to her about taking care of him, and getting him to sleep because he needed his rest."

I was giggling at this point, for many reasons. So happy for Abbie that she could voice the cry of her heart. So overwhelmed by Maria's compassion. So amazed at the way Abbie can communicate with me, even without words. You see, after she woke up from her normal post-Maria marathon nap, I sensed she wanted the bear. Mr. Bear ended up going to the baseball game with us, and did not leave Abbie's side all night. Now I understood why. She is taking care of him, and he is taking care of her.

Mr. Bear went to Matthew's concert tonight, and is tucked in right next to her now. Even barely awake, she smiled when I laid him on her chest to give her hugs. It makes me happy that she has a special little friend to help her through scary times, like being left, and share happy times like games and concerts.

Maria also shared with me that Abbie made terrific progress with moving specific limbs on command, as in "raise your right arm." When she told me Abbie lifted her arm, I envisioned the small-amplitude lifts she does, mostly to indicate she understands what she is being asked to do. Oh, no. Maria quickly corrected my thinking by telling me she was lifting her arm up to her head. She needed to hold on to Maria's finger to help with the weight, but she did it! At the end of the session, Maria supported Abbie so she could stand with flat feet on the floor. Flat feet is a huge accomplishment for Abbie, as it signals an almost complete recovery of the ankle injuries of last summer!

As I imagine it now, I can hear Abbie's voice, reaching out for Maria, pleading not to be left with a kind stranger. The music of heaven.

Saturday, May 10, 2008

Abbie's Outfitters

Aloha! I am typing this at 1:45am for a couple of reasons, neither of which involve Abbie's health. The twins are having a sleep-over birthday party to celebrate turning 11 on May 6th. Our Party Papa is overseeing 12 boys while I tend to one little girl...hardly seems fair! We didn't have nursing this evening, and for some reason Abbie picked tonight to need oxygen, which is rare for her lately. So, we've been camped out in one end of the house while the revelers occupy the other. It has been amazingly quiet so far, but I'm sure the boys will be up with the sun.

The second reason I am posting so late (or early, depending on how you look at it) is that I've finally completed a long-procrastinated task, and I want to share it with you. I find myself recommending so many different books and other products that I've long thought it would be convenient to consolidate them in one place.

Voila! I would like to introduce you to "Abbie's Outfitters", our new online Amazon store.

Abbie's Outfitters

I've selected the books, CDs, and products that have been the most beneficial during our journey. I hope that you enjoy browsing, and find the store useful.

For brain-injury families I do want to point you to some things listed under "helpful products." There are three items there that Maria Margarita has introduced us to: Traumeel, Zeel, and Lymphomyosot. I had never heard of these before working with her, and they have been very helpful. I was glad to find out I could offer them through Amazon.

Abbie has had her ups and downs lately. She and I are really enjoying getting out in the yard in the morning to bounce and stretch on a ball while soaking in the sun. But, it appears that we are back to having a rough time between 3pm and 7pm each evening. We think it may be an after-effect of the MRI and DTI test last week, since they most definitely had an effect on her brain. For the first time in ages I slept to the sound of the concentrator last night. She only needed half a liter, but the machine isn't quieter just because she needs a low flow! When I got up this morning I remembered why I used to always feel so exhausted. The sound that seems like a whisper in daylight, beomes a freight train in the dark.

I want to wish a Happy Mother's Day to all the incredible mothers I know, especially my own. May your day be blessed with the realization of your impact and influence on those you love.

Thursday, May 08, 2008

Not a Single Tear

Just time for a quick update, but I did want to share that Saturday, May 3rd was a wonderful day for our family. There was a moment when I was sitting at RJ's baseball game, in the sun, where I could feel it....I knew I was being prayed for. We were able to rejoice in the fact that we have our Abbie, and that she is doing so very well. Thank you all for your thoughts and prayers on that day, but even more importantly, on all of the days of the last four years. We wouldn't have made this climb without you, and the fact of the matter is Miss Abigail Faith Vara would not be alive save for the power of your prayers.

Lots of good things this week, including the final report for this semester of speech therapy (first time yet that I"ve heard multiple times '100% success rate' on numerous goals!) And, much good work with Maria this week to get Abbie's brain calmed down after the MRI and DTI tests last week.

We are very blessed, and you are one of the most tangible proofs of that!

Friday, May 02, 2008

Answered Prayers, and Another Request

A big "Mahalo" to all of you who prayed for Abbie regarding the brain scans we did this morning! It was quite an experience. As I posted earlier, I had been warned that the DTI test was loud. Wow! Jackhammers on a sidewalk would have been crickets chirping compared to that test! Abbie had earplugs in and earphones on over her ears. I think it was the microphone attached to the earphones that really completed the "Abbie as a Cosmonaut" look. She was also outfitted with a set of goggles that allowed her to watch "Lilo and Stitch" during the tests. With all of that on her head, she was then slid into a little basket that held her head still and straight. Not the most pleasant position for a nap.

I had kept her awake all morning, minus a 10 minute catnap, so that she might be too tired to fidget. As I alluded to above, fatigue couldn't have a made a sloth hold still on that table! Our dear Maria went with us, so she and I both donned earplugs as well, and each took one of Abbie's hands and feet in our hands. The noise and vibration were hard on both of us, so I can't imagine what little Abbie went through as she actually lay in the middle of the doughnut. There were times she cried, so I worried about how the images were going to come out. I should have known that with two women holding on to her and praying the entire time, all would be well.

It was more than well, it was GREAT. The radiologist told Ray with a smile, as the DTI and MRI were completed, "Those were just two very complex scans that went very they are going to think we can do this all the time!" The DTI images were just raw data and have to be processed through the computer to give us usable, readable images. BUT, Dr. L. did show us one of the raw images, which was a transverse slice of Abbie's brain (horizontal). The DTI uses colors to indicate direction of connection: green is for front to back communication, while red and blue indicate left to right (and vice versa) communication. I have to say, while this was just one raw image, we saw lots of dots of every color....hurrah!! Abbie's brain is communicating in every direction (my analysis, not the radiologist's) We don't expect her pictures to come back looking like that mohawk DTI image I posted, but there WILL be some wires tying parts of her brain to each other.

Then, the technicians handed us a huge envelope with all of the MRI images...we got to take them home! Maria and I could hardly contain our glee, and hurried home for what seemed like Christmas on May Day. Of course, we don't have a lightbox at the house, so we taped up images all across our sliding glass doors. We got out the films from Abbie's first (and only ) MRI, done three days after her injury so that we could compare them to the new ones.

Several things jumped out as we spent an hour or so with the images. In no particular order:

1. Looking at her first MRI, I could see that the medulla (brainstem) was bent rather than straight, forced to the rear by the pressure of the swelling in the front of Abbie's brain. Knowing what I know now it struck me very hard that we came very, very close to losing fact, looking at those first images, I cannot believe she survived that injury.

2. Her new images are nowhere near normal, but that's not what we were looking for. Her ventricles are enlarged, holding more fluid to make up for the tissue loss as her brain has atrophied. She does not have the same amount of tissue mass that a normal brain does, however, she definitely has grey and white matter, and especially in the upper portions of her brain, the contours are curving and folding.

3. Her cerebellum is smaller, but two important things have happened. One is that a huge gap between the two halves has reduced and is beginning to fill in. The other is that the cerebellum was pushed up out of its normal position by the swelling in the back of Abbie's brain. This left a big gap between Abbie's brain and her skull, where the cerebellum was supposed to be. Her cerebellum (which has a lot to do with motor control) is now back in it's proper place, and the spacing is much more appropriate.

Overall, the appearance of the tissue in Abbie's brain is much, much nicer. Instead of a big bowl of undifferentiated grey mush, it now is very differentiated by color (light and dark) and by contour.

Given all this, it still was not an easy day. Halfway through looking at the images I recognized the irony in the fact that we had taped them to the door I'd run through to give her CPR, and if we looked past the images the pool filled our vision. Maria was a godsend, and once she realized I was slipping down the slope, she intensified her efforts to point out improvements.

Ray and the boys enjoy watching a show called "The Biggest Loser", a weight loss challenge. It always amazes me, at the end of the season, to see the "new" person stand next to his or her "before" photo. I drove home from the imaging office today with that thought in my mind -- these are Abbie's "before" pictures. One day she will stand next to those images and we won't be able to believe that they once belonged to her.

I must give my deepest, most heartfelt thanks (which still seems woefully inadequate) to the entire staff at InVision Imaging. They gave us a profound gift today, with such warmth and caring that I am still at a loss for words.

Abbie also continues to show us each day that she is working hard to get better. Today, Carol came to give Abbie Healing Touch, and was working with her while I cleaned house. I came in to check on them, and Carol exclaimed, "Did you know she can lift her arm all the way over her head???" Why, yes I did, I told of last week that is in Abbie's repertoire.

She went to RJ's baseball game with me tonight and was so attentive. Not only to the game, but to the busses passing behind her and people talking around her. Now she can evidence this attention with movement, which engages everyone around her.

So, it has been quite a day, but I want to wrap this up by asking for fervent prayers for Abbie's buddy Caleb. If you've not clicked on his link in a few days, he could really use your support. He came to our house on Tuesday to use the HBOT chamber and Tesla lights. But, he had a little runny nose, so we skipped the chamber for that day. His mom called the next day, to set up a time come over, I thought. Wrong. She was calling to tell me that she'd had to begin bagging Caleb early that morning because his oxygen sats had dropped so low. They went by ambulance to the hospital where he was admitted to the ICU, sedated and ventilated. I saw him last night, and he looked great, but was still knocked out from all the drugs. It seems that the origin of the problem wasn't respiratory per se, but rather a wave of seizures. I spoke to Kehau this morning and it sounds like his neurologist thinks the seizures were brought on by a quickly spiking fever. This would be good news since that is a transient problem that even happens in kids without brain injuries. I'll be seeing them tomorrow, and will tell them that all of Abbie's Angels are praying for Caleb to bounce back.

We've never had to go back to the PICU or call an ambulance to the house, so I can only imagine the emotional toll this event has taken on Kehau and Brandon, please pray for them as well. They are a blessing to me, as I see God's grace illuminate their way through challenges, reminding me always that we have the same Father, same Hope, same promises....what comfort, what joy.