A New Report Card

I am pleased to share Miss Abbie’s latest MEAD “grade”! After falling back down to -2 millivolts, when we measured her last Friday she was back up to -10!! I believe that this means that the new diet is starting to work. She has been on it for almost 5 weeks now, and we were told to expect changes to start manifesting 6-8 weeks after we started it. I think we should be able to avoid any more big drops in the future, and hope that this is just the beginning of a steady incline in her voltage.

HBOT continues to go well. She hardly fusses at all during the dives and often dozes for the last 15 minutes or so. Her burn is healing so well — of the 9 inches originally burned, only about 3 of it is still open, and that is close to healing as well.

Because of staffing changes, we recently began working with a new OT, Patty. She is really good with Abbie, and we discovered this week that she is just the human jukebox we have been searching for. Her songs kept Abbie engaged and motivated during the session. We saw some good vision things, including some tracking, and she was so good with head control that we stopped even timing it.

We do have a big prayer request. For the first time since Abbie was injured, Ray and I are taking the boys on a little getaway. We will be going to Disneyland over the weekend, leaving Abbie in the care of Debbie, Genevieve and some very faithful friends. This was a hard decision for us, but our boys have sacrificed so much these past couple of years, and we have missed out on a lot with them. We saw them growing up before our eyes and knew that we were missing the window. Please pray that Abbie would be healthy, that her caregivers would be confident and comfortable in caring for her. Please pray that we (really I mean “I”) can relax and trust while we are away. Matthew was tearful for three days after we told him we were going without Abbie, saying, “If she’s not going, I don’t want to go either.” I was so blessed to see his heart for his sister. But, this will be a good thing for all of us….and next year we are planning on Abbie walking around Disneyland with us!

A very happy birthday to our son Kyle, who turns 14 today (9/27). Can it be that long ago that I watched the sun rise over Mount Rainier as I held my brand new baby boy? He actually left this morning for a three day leadership camp with his class, so we settled for birthday waffles with whipped cream and candles this morning. We are so proud of the young man he is becoming and are so thankful that God blessed our family with him!

Golden Dreams

Last Wednesday night, after our small group spent a lot of time praying, I dreamt that we were back in the circle in our living room praying together. In the midst of it one woman, Laura, turned to me and said, “The golden dogs are bringing her healing.” Even in my dream I snorted, laughed and gave her a “You’re crazy” look. I woke up remembering that silly dream, and chuckled about it as I ate breakfast.

I kept right on laughing until suddenly it fit together…the “golden dogs.” A while back Abbie was visited in therapy by a puppy training to be a therapy dog who will work at the children’s hospital. Tucker is a beautiful, mellow Golden Retriever. Shortly after that session Ray called and said he’d gotten an email saying that the trainers were looking for a foster family for Tucker to live with after he’d completed his training. The only requirements were that you had to be a Kapiolani employee and you had to be willing to transport the dog to the hospital four days a week. Kapiolani is one of the hospitals Ray oversees, so we checked that block. I told him what a wonderful dog Tucker is, so Ray put our name on the list. As time went by, however, the reality of the second requirement seemed too much for us right now. As Ray put it, “I don’t think we can handle a dog with a job.” So, he reluctantly removed our name from the list. My dream made me wonder if we had made a mistake. But, I have a very wise husband who usually knows my limits much better than I do, so I decided not to push the issue.

I related the crazy dream to Lynette, our PT, during our session that morning. I still thought it funny, but it did stir the wonder in my heart a little, too. Toward the end of the session there was a knock on the door, and when we opened it who came through but Tucker. He is being trained on Maui, so it was a surprise to even see him. The trainers said they were on the way out when they heard Abbie was in therapy, so they brought Tucker back to see her. He immediatly began giving her big, sloppy kisses, which she loved. The trainers raised their eyebrows and said, “He doesn’t do this…this is only with Abbie.” They expressed how disappointed they were that we’d removed our names from the list because they really thought it was meant to be. The first time we met Tucker he was wearing a hand-me-down collar with “Abby” embroidered on it…they took it as a sign, and I tried (in vain) to ignore it. Hearing them express how much they thought Tucker and Abbie have a special connection made me think the “Golden dogs are bringing her healing” phrase might not have been too far off-base.

Ray did get a phone call the next day asking if we would reconsider…I tried to conceal my glee, but failed miserably. I am praying that we can find a way to make it work. Lynette even suggested that some of the hospital volunteers may love to pick up a cute dog every day…we’ll see…please just pray that this situation would work out just the way it is supposed to and that I wouldn’t get in the middle of it and muck things up. Tucker would be wonderful for Abbie, and actually him going to work every day would be a good thing.

This is a long story, I know, and it’s a bit odd. I suppose I shared it to include you in some of the strange and wonderful ways God is moving in our lives. Some days He really makes me laugh.

Resistance

I have been delayed in posting because it has been a very eventful couple of weeks around our house. I am not going to bore you with most of the details because I want this to remain Abbie’s site and not the Vara Family Soap Opera. But, I will share with you the events involving Abbie, because I have decided that to not write about them would be like hiding her candle, and I never want to do that!

After a challenging week our family was very excited last Saturday to escape to the UH football home opener. If you’ve read Abbie’s website for long you know that UH football has been an oasis for us during this journey, a time to be with our boys and forget how different our life is for a while. It was a great game, and at one point I even turned to Ray and said proudly, “I am really here, in the moment – I am not worried about anything.” That turned out to be a short time-out, because it all changed once we arrived home. I walked into Abbie’s room to find her caregiver crying so hysterically she couldn’t say anything, and could only point at Abbie’s left leg. I worried that it has been dislocated or broken, but as I got closer I saw an enormous burn on the outside of her leg, from just above the knee to an inch above her ankle. Most of the skin had already blistered and was hanging.

Her caregiver has known Abbie since before she was hurt, and was completely devastated both by her initial injury and now by the burn. Actually, having her so upset probably helped me because I had to focus not only on the burn but also on calming her down. I just said, “Hang on – we can fix this!” and ran to get the Biomodulator. I made her watch me treat Abbie for about 30 minutes, during which time we saw noticeable improvement. That comforted her enough to allow her to drive home. I continued to treat Abbie for about 4 hours, until I could not longer stay awake. I was very pleased, though, with how much better it looked in the morning. As best we can tell our bathtub malfunctioned while Abbie was having her bath, and the sauna jets turned on, sending shots of steam directly onto Abbie’s leg. The burn would’ve happened no matter who was bathing her that night.

Fortunately, the plastic surgeon who runs the burn unit at one of Ray’s hospitals lives right up the street and kindly stopped by on Sunday to check the burn. He said, “Yep, that’s a good second degree burn. It’s lucky it’s not third or we would have to graft something that large. The good news is it will heal in 7-10 days, the bad news is that this is the most painful kind of burn.” He came back later in the day, bringing the supplies I would need to do the twice-daily dressing changes. Caring for this burn has been the most emotionally-challenging thing I’ve had to do for Abbie since her initial injury. With every dressing change I have to scrape the burn, which is 9”x3”, all the while just imagining how much that would hurt if someone were doing it to me. She is such a trooper though, and handles it much better than I would.

In true Romans 8:28 fashion, God has used this for good. Ray and I have been praying fervently lately about what the priority list for Abbie should look like. There are so many things we want to do for her, and it’s hard to figure out what should come first. Abbie’s burn brought immediate clarity. Hyperbaric Oxygen Therapy (HBOT) is very good for healing burns, and was on our priority list. So, we did our first session (“dive”) last Thursday, the second on Saturday and the third yesterday. It has made an enormous difference with the burn, which is healing very nicely. Please, though, pray for quick and complete healing and for ever-decreasing pain. I am also hopeful that HBOT will make a difference with her brain injury.

I must yet again be a billboard for small group ministry. I sent out an email to our small group detailing the battles we’ve been through lately, and when they came over on Wednesday we skipped our usual study and prayed instead. We prayed over our house, over Abbie, over every situation that has come up lately. In essence, we reclaimed our peace. I don’t know how we would travel this path without our precious “La Familia” (we call ourselves that in spite of being a half Asian, half caucasian group…go figure.)

As we were praying it hit me…all these events were not random, but an attack. And, strung together they appeared to be the attack of a desperate enemy, one final assault. That just made me think one thing, victory is very, very near. With that realization I began thinking, “Is that all you’ve got? Do you think these things, as difficult as they are, will make us quit now? We have trudged for too long, through waters too deep to turn back now. If that is the best you’ve got…you LOSE!”

Dancing the Same Dance

The “Two steps forward, one step back” waltz continues at our house. We watched as Abbie’s voltage dropped to 5 last weekend and landed back down near 2 again this week. We think we know why this is happening, and we are in the midst of the process to solve it permanently, which makes is much easier to see discouraging numbers come up on the screen. In 3-5 weeks her liver should be in much better shape, and we should see her numbers start to rise again.

We took the MEAD (voltage measuring device) to PT with us on Thursday so we could show Lynette how it works. She thought it would be interesting to measure before and after therapy, so we did. Even though Abbie’s voltage was pretty much in the basement at the start of the session, it did go down a little afterward. We expected to see this as her hard work during PT drained energy from her. This was a good illustration for us to see, though, and influences me to do mellow things with Abbie right now…a lot of work on vision, hearing, sensation, speech and not so much on gross motor.

As I said, all this is easier for me to take because I know where we are going and can see there is a way out for Abbie. But, that doesn’t make Abbie free yet. We were waiting to go into therapy and there was a little girl in the midst of a session who was supposed to be practicing running down the hall. She was quite a rascal, laughing incessantly, and not exactly task-oriented. The therapist put a big yellow dot on the hallway floor and told her to run from that to the therapist to get a sticker. She finally did right before we went into Abbie’s therapy session. On the way to the car I told Abbie, “Pretty soon that will be you, running from the yellow dot to get a star sticker.” Big tears began rolling down her cheeks. That running practice can’t come soon enough!

Koo Barnes posted a very interesting article on her husband Chris’s site. http://www.guardian.co.uk/g2/story/0,,1870171,00.html#article_continue
The lengthy article detailed the effects that the sleep drug Ambien is having in people who are minimally responsive or in vegetative states. For about 60% of recipients, dramatic changes begin occurring within 30 minutes of taking the drug. While I don’t think I will consider giving this to Abbie, there were a couple of very interesting points raised. A man named Louis, who is typically in a minimally responsive state, is able to converse normally after taking the medication. He was asked if he feels a difference in awareness before and after taking the pill. He said “no”. So, on the inside Louis feels exactly the same and has the same level of awareness…which fits exactly with what so many brain injury families feel, that our loved ones are “right there”, just unable to communicate effectively. The second point I noted was that after observing “miraculous” changes in people like Louis, doctors did some imaging to figure out what was actually happening. After being given the medication, areas in patients’ brains that had showed up black and “dead” on previous scans began to light up with activity. Hmmmm…perhaps they weren’t “dead” areas after all. The researchers have begun to theorize that the traumatized brain cells may go into some sort of hibernation controlled by a neurochemical called GABA. So, all those ugly scans that we, and many other families, have had to endure may not be as black and white, literally, as we thought. There is so much hope!

On the Mend

Abbie and I continue our E.T.-Elliot relationship, always seeming to ail at the same time and recovering in synch. This doesn’t make it easy on our family, having her needs rise just when I am unable to meet them, but it seems that we are finally both feeling better again.

We have been keeping her on oxygen at night just so she can sleep soundly, which also gives us a better chance at some decent sleep as well. Her heart rates have been falling, with sleep rates into the 60s and awake rates around 100. I take this as a sign of relaxation and calm, which is encouraging.

Her diet is going well, except for some brotherly complaints about an increase in the number of stinky, poopy diapers every day. Hey – a newborn diet begets newborn diapers, what can I say?

We had a good PT/OT session today. One of her goals is to assist in transfers by standing up on the footplates of her wheelchair. She was able to bend her legs nicely to get in the right position to do this, and the ease of this is increasing as well. Honestly, I spent the whole session talking to the resident who was observing. I’d started to tell Lynette about Abbie’s superb report card last week, when she said, “Wait! We have a resident coming…start telling me when he gets here so he can hear the whole thing.” I believe I answered, “OK, so he can think ‘this mom is crazy!'” But, I did wait until he arrived to start my spiel about how her voltage has risen 9 points in two weeks. Instead of a confused look, his eyes lit up. Turns out he is training to be a pediatric neurodevelopmentalist, a very new specialty. He longs to find options to offer kids with autism and CP, and felt that it had to be electrical somehow, since the brain is one giant electrical organ.

The best summation of our conversation was his comment, “Wow! It sounds like I need to go to Dallas and meet Dr. Tennant!!” I was thrilled to see a future specialist “get it”! I told him how much hope it gives me and how much families like mine are depending on physicians like him to bring new technologies and opportunities into reality for our kids.

I will never have the mind of a physicist or have a PhD after my name, but I am more than content to be a gardener, planting little seeds as I go, trusting in God to bring the harvest.

Abbie’s Report Card

Three weeks ago we were able to test Abbie’s overall body voltage, and found that she was running on about 2 millivolts, compared to a normal voltage of 20 millivolts. Two weeks ago we radically changed her diet to enhance her ability to hold on to the voltage we are giving her with the Biomodulator. Debbie, Abbie’s nurse, purchased the device (“MEAD” – Median Energy Analysis Device) used to test Abbie’s voltage, and we used it for the first time today. I am sooooo very pleased to report that with just 14 days of good fats, Abbie’s voltage is now up to 11 millivolts. WOW!! Much more than I was expecting to see this soon. I have been noticing little changes in Abbie, like better muscle tone, more vocalization, and more expressiveness, but I didn’t want to get too excited before I saw some hard numbers. For her first MEAD report card Miss Abbie earns an A Plus!!!

I also got a wonderful call from Dr. Tennant this morning. He asked about my jaw, about how Abbie was doing, and I started wondering how he had the time to check on such things in the middle of the day. Then he said, “Are you ready for some good news??” I am always ready for some good news. So, he said, “I have someone here who wants to talk to you.” He put Pam Wilson on the phone. Pam is the grandma of little Jordan who nearly drowned 2.5 months ago. They took Jordan to Dr. Tennant’s clinic in Dallas this week – so far he’s had three days of treatment there. As soon as Pam started speaking I could hear the tears of joy. She said, “Jordan’s high muscle tone is GONE, all of it. He has no tone whatsoever!!!’ You need to know that recently I talked to Pam, who was crying tears not rooted in joy because Jordan’s tone was so high, but because his respiratory rate was so low the doctors wouldn’t give him any anti-spasticity drugs like Baclofen. There was no remedy for him, and he was in obvious pain. Pam said that his facial expressions have returned to what they were before the accident as well. I was stunned and overjoyed to hear this because Jordan is the first near-drowning survivor to be treated at Dr. Tennant’s clinic, so of course I think about what is possible for Abbie when I hear about Jordan’s gains.

I told Dr. Tennnant, “I know this all works, I know why it works, and I believe you and Pam but it’s still so incredible to think about — real restoration!!” Praise God from Whom all blessings flow — that song was all that would come out of my mouth for the next half hour. There is a way back for our hurt kids!!! And, with Abbie’s latest report card I know she is well on her own way along that path!

A very good day!

Under the Weather

We had a wonderful weekend away at a beach house with our entire small group (7 families, 18 kids). Unfortunately, I think because it was hot and the house had no A/C, Abbie got overheated and too dried out. I noticed her lips turning blue as I fed her on Sunday – the first time I’d ever seen that. I hooked her up to the pulse ox and saw she was at 85. Good thing I’d packed a tank of oxygen “just in case”. Her secretions were so thick she couldn’t cough them up, and I think she got a mucous plug in her lungs. Frequent shots of saline spray through her nose loosened things up after a while, and she settled down at 1 liter of oxygen through the night.

By Monday morning the oxygen tank was empty, so it was a good thing Abbie could maintain her sats on her own. The weekend had taken its toll on her, however, and she was exhausted. Lack of sleep is her biggest seizure trigger, and sure enough, on Monday morning she began having bouts of seizures. I had her emergency medicine with me, but it can really depress breathing, so I didn’t want to give it to her when she wasn’t breathing well, I was out of O2 and we were an hour and a half from home. Thankfully, as soon as she nodded off for a catnap the seizures abated.

She started sounding junky in her chest yesterday, so I took her to the pediatrician today. She sounded clear in the chest and looked good otherwise, so this was just a little bump. She is handling her new diet beautifully, which is encouraging to me.

So, all that doesn’t make it sound like we had a good weekend, but we did — it was very memorable. I will try to post some pictures soon, as well as a better description of the absolute paradise that belonged to us for a few days.

I must admit that I am not bouncing back from my oral surgery as well as I’d hoped. Please pray for Abbie and I to recover so that the rest of the family can have some of my attention again. And, please pray for Gabby’s family (www.gabbysmiracle.blogspot.com). She passed away on 8/31, with services scheduled for 9/9. I can’t imagine their grief, but I also probably can’t fathom the grace God is pouring out on them.