Wild Week

The important stuff first…Abbie is doing much better! She is still on oxygen, but only about 1 liter. We are suctioning only rarely now, and we are all sleeping better at night. We figured out one of the causes of our stress was an oxgyen concentrator that is not working properly. So, I would have it turned all the way up to 5 liters/min, and she would still be in the low 90s. I worried that I may have to break down and take her to the hospital, but when I switched her to tanked oxygen, her sats were great on 1.5 liters. Argh!! As Kyle would put it, it really “grinds my gears” when I lose sleep and worry because equipment malfunctions.

She did so well on Monday that I decided to stick with our plan for Tuesday. The boys and I flew over to Maui for the day to see my aunt and uncle, two cousins, their wives and two kids. We had a blast lolling on the beach and playing in the water at Kihei. Every time I called to check on Abbie she was doing fine. After a terrific day, we took the last plane back to Honolulu, and I was exhausted by the time we landed. I was so looking forward to just dropping into bed. Then, Ray called…”You need to get home as soon as you possibly can. I am really struggling to keep her sats up.”

Instantly the boys’ “fun mom” disappeared as “tired worried mom” snapped at them to get in the van, buckle up and be quiet! It was a pretty stressful hour or so after I arrived at the house, but we got her stabilized and able to sleep. The events, though, coupled with my exhaustion pushed me past my breaking point. I was crying by the time I collapsed into bed, only able to say “I cannot do this anymore, my body is just giving out.”

I slept well, and the morning brought a whole new wonderful day. Rolfing session #2! Sally had asked me to keep good notes of any changes during the week. So, all our medical adventures were detailed in black and white. I suspect that the last session may have precipitated some of Abbie’s struggles over the weekend, because as long-constricted fascia is manipulated, trapped toxins can finally be released. Sally decided that perhaps we should not do as much work the second session.

Abbie started smiling as soon as we walked through Sally’s door, and was wide awake on the table with a heart rate of 83, which is normally a very relaxed sleeping rate for her. Sally taught me a couple techniques to use when Abbie has a fever (Triple Heater 16 and Still Point for those familiar with such things), and then spent some time on Abbie’s lumbar spine. Again, I saw more of “normal Abbie” emerge and I was transfixed. Most of the session focused on Abbie’s thighs and hips. Sally described the fascia as being like pantyhose spread over the muscles. So the women out there can really relate to how Abbie’s legs feel…you know that annoying feeling of panythose being twisted into the wrong position. That is what Abbie’s legs feel like all the time as her fascia has become misshapen in response to tense muscles. So, we women can also imagine the relief Abbie felt as Sally loosened these bindings.

Sally gave me one other assignment at the end of last week’s session. She wanted to see video of Abbie before she was hurt so that she could observe Abbie’s structure and how she used her body. This made a lot of sense, but I wasn’t excited about finding the video. I procrastinated that task until yesterday morning. I laughed watching her try to rock in a yet-to-be-assembled rocking chair. I howled watching her steal everyone’s ice cream at Kyle’s birthday party. I sat in stony silence of foreshadowing watching her play in a pool with RJ. What hit me the hardest was her voice…that sweet little girl voice, still using many words only understood by her family. That’s not the voice I hear in my heart any more…I hear a more grown up, eloquent voice. I’d almost forgotten how little she was. The pain of watching these images lodged in that deep place that goes unseen and for the most part unacknowledged, especially by me. Two events later in the day would open that place up and clear it out.

The first was at Sally’s house. I mentioned that she taught me how to get Abbie to still point. After we’d loaded Abbie in the car, I went back in to bid Sally farewell. Changing the sheet on the table, she asked if I had a couple minutes. Of course!! She said she wanted me to feel still point so I would better be able to do it for Abbie. As she’d told me earlier, Rolfing is teamwork, not just her working on me. So, as she cupped my head in her hands she taught me a specific way to breathe. I had to really concentrate on that, but got it right a few times. When I stood up again after five minutes on the table the difference was amazing. I’d walked in feeling like the entire weight of my body was riding on my sacrum. Now I felt much lighter. More importantly, recently I’ve caught myself holding my breath and grinding my teeth during the day. That “deep place” seems to be filled to the brim, and overflows now even during waking hours. As I walked out to the car I felt like I was really breathing for the first time in ages.

As I was leaving, Sally commented that because Abbie and I are so tied together, it would probably be good for me to have some work done as well. I was thinking the same thing, and hoped to squeeze into her schedule after her trip next week. She said she really felt we needed to do it soon, so she is fitting me in next Wednesday morning. I am so excited to begin this process to help Abbie and save myself!

So, I’d gotten some physical help to deal with the sadness of the video, but the even brought what I needed even more..spiritual help. Our small group is studying the Beatitudes from the Sermon on the Mount in Matthew 5. I chose to use my amplified Bible, and was so glad I did when I read verse 4, about those who mourn being comforted.

Here is what I read: “Blessed and enviably happy [with a happiness produced by the experience of God’s favor and especially conditioned by the revelation of His matchless grace] are those who mourn, for they shall be comforted.

We truly have been comforted in ways as unfathomable as his grace, and that comfort continues as does our mourning. It’s not acute anymore, it’s not eyes-swollen sobbing or deal-making with God, but it does continue. When we imagine who she would have been. When we miss who she was. When we count the cost our family, especially the boys, have paid. But, through this we have been “especially conditioned by the revelation of His matchless grace”, and the depth of that blessing really cannot be measured.

I read a book today that sums up our brain injury journey…”Oh, The Places You’ll Go!!” by Dr. Seuss. If you ever wonder what this life is like, read that book – we’ve experienced almost every page so far.

On the opposite end of the spectrum from dear Dr. S., lies Aeschylus, who lived from 525 BC – 456 BC A dear friend sent me this quote that sums up where I’ve been personally in the last couple months:

“He who learns must suffer. And even in our sleep, pain that cannot forget falls, drop by drop, upon the heart. And in our own despair, and against our will, comes Wisdom by the awful Grace of God.”

A Better Night

Thank you for praying! Last night was significantly better than Saturday night. Abbie only needed two liters through the night, and I gave her nebulizers at 9pm and 5am just to keep her secretions loose, not because she was really struggling. Her fever did rise again to 103 around 5am. That’s the number at which I normally break down and give her some Tylenol.

I am a big fan of tea tree oil, but recently found out that rosemary oil has the same properties but is much more potent. Last night I rubbed some diluted rosemary oil on her chest, and I think it did make a difference. I put a special essential oil blend for respiratory issues on her big toe, and that also helped her. It’s funny that a few minutes after putting it on her big toe, you can smell the oil on her breath.

So, she has been sleeping now for two hours under Debbie’s watchful eye, with sats of 99 and heartrates in the 90s. (That sure beats the 200 I saw on Saturday night!) I believe we have turned the corner — thanks so much for your prayers!

Out of the Blue

When I am writing an update at 2am, you know it can’t be all butterflies and sunshine. Our family had a wonderful day today, with a surprise visit from old Los Alamos friends, the Desko family. They lived up the street from us back then, and it was to Cheryl that RJ proudly announced Abbie’s arrival by crowing “We got a grill!!”

We spent several hours down at the Outrigger Canoe Club, which afforded us a spectactular view of postcard-worthy day. We kept Abbie under the umbrella all day and for the most part kept her well-shaded. Or so we thought. She was kind of whiny the last 30 minutes we were down there, and all the way home, which is very unlike her. Once we got home it didn’t take us long to determine the source of her discomfort, because it was looking right at us. The bright pink shade of the right side of her face let us know that we hadn’t protected her from the sun as well as we thought.

We found some good aloe, got her all settled and then let Genevieve take over while Ray and I took the twins to a UH baseball game. We arrived home at 9 to find Chase helping with Abbie, who was on three liters of oxygen and stuggling to breathe. Her sats were in the mid-80s, and the OJT nurse part of me kicked in as I started barking orders at everyone.

Turns out she had crashed about 10 minutes before we arrived home, at the beginning of a feeding. We quickly gave her a nebulizer treatment and kicked the concentrator up to 5 liters. The neb helped get her sats back up into the mid-90s fairly quickly, so I then started a fast drip of water, vitamin C and some essential oils.

I switched her to a tank of oxygen because I don’t trust the concentrator to actually put out a high flow of O2. All that excitement was five hours ago, and Abbie and I have yet to settle down. She is trying hard to sleep, but I keep having to wake her to keep her sats up –either to suction or to move her around. The highest the regulator on the tank will go is 4 liters, so I am trying my best to just make it through the night on that. The last hour has been particularly challenging, as even with a second nebulizer treatment, I just can’t keep her sats up. She’s running about 101 degrees, and is pretty exhausted. Please just pray for her to bounce back. This all came out of the blue, so I’m hoping it’s just a little bump and not a form of the head/chest infection that has been going around lately.

I know that right now Abbie’s angel is before the throne of God (Matthew 18:10), but I also know how powerfully your prayers have trimmed the sails in this journey. So, although it’s been a busy night, I am at peace knowing she is in very good hands!

Rolfing

I know I’ve already written once today, but we don’t get many days like this one…when changes happen within an hour! I recall the day Abbie was decannulated two years ago, and in an instant she went from a girl with a trach, to a girl with a band-aid. But, mostly this journey has been about celebrating incremental steps and patiently watching the miracle unfold.

Today we met a woman named Sally, who has been a Rolfer for 20 years. Rolfing involves working with the fascia, or connective tissue, in the body. I did’t quite know what to expect, so just sat quietly on the opposite side of the table. Sally put her hands under Abbie’s head and within a minute Abbie gave a big sigh of relief. We were off…


The session consisted mostly of Sally pressing, holding, or slightly rotating certain parts of Abbie. As Sally focused on Abbie’s diaphragm, Abbie’s breathing got deeper and more relaxed as the session progressed, and by the end of it her ribs, which had been concave and jutted out at the bottoms, were rounded and normal again. I couldn’t believe it! Those ribs have vexed me for many, many months, wondering how we were going to get them back into proper shape, worrying about the commentary they were on Abbie’s ability to draw in normal breaths. To look down and see a normal healthy chest almost took my breath away.

Sally also worked on the area between Abbie’s hips and knees. Abbie has quite a bit of external rotation in her legs, despite the all the therapies and exercises. With a few minutes of “processing” Sally had Abbie’s legs soft and at rest with both knees pointing to the ceiling.

The soft palate of Abbie’s mouth is quite narrow, partially because she has not been eating and talking, and partially because she is taking after her brothers and ensuring at least one orthodontist’s kids get their college funded by our family. Sally did some work inside Abbie’s mouth, and I also saw changes there. I could not believe that I was watching things change right before my eyes!

I feel so blessed to have someone like Sally five minutes from our house! When she asked what drew me to Rolfing, I pulled out the “Energy Medicine: The Scientific Basis” book and she smiled. The author was her physiology teacher. Small World…No Coincidences!

We have appointments scheduled for the next two Wednesdays, and I am very anxious to see what those session will bring. It is refreshing and joyful to have immediate gratification, I must admit! And, to see the solution for so many “unsolvable” problems, like shortened heel cords and diminished lung capacity. Can it really be this simple? I guess I’ve found that’s the way God usually works, simple but profound.

One more partner in our journey, one more piece for our puzzle, and one more day for the scrapbook!

Teamwork

Since we were on vacation last week I decided to wait to really begin Abbie’s new neurodevelopmental program until this week when we could be consistent from the start. It’s only been three days and we can already see that our intution about her response was correct. We are already noting changes, she is improving every day and it is incredibly motivating for each of us — which is good because this program requires all of us to contribute.

I have been so impressed with my boys, each taking an arm or leg to help Abbie complete an exercise. I honestly hadn’t planned on including the twins in the patterning team, but they refused to be left out. They are doing wonderfully, listen to instruction well, and most importantly, give Abbie constant encouragement while she works. Her program has blossomed into a “Team Vara” project, and that is a blessing for all of us.

Some particulars: one of her activities is “phrase building” where I make up a three word phrase then say the first word, followed by the first and second words together, then finally the first, second and third words. I use anything from “Abbie dances ballet” to “pigs smell stinky” (from our recent trip to the zoo). I call them her “stories”, and we have to do them as often as possible, with her looking right at my mouth. At the end of the first day of program Abbie was wide awake long after bedtime. So, I said, “Time for stories! If you want them, you have to look right at my mouth.” Within about a second her eyes were locked onto my face and we began. This was really exciting to me because we are stil working so hard on her vision!

Many of the exercises are physically demanding for Abbie, from being moved in a crawling pattern to her favorite, “tuck-in/blast-out” where we curl her into a little ball and then “blast out” all her limbs. In just three days we have seen such an improvement in her tone, especially in her arms. She also knows all of the patterns already, so often we have to tell her to relax and let us do it for her instead of trying to help us.

It’s also been interesting to see changes in areas we haven’t been working on directly, like her mouth. We do have exercises for her mouth, but I lost the special piece of equipment that we use while we were in Dallas, and we’re awaiting the arrival of a new one. So. right now she’s off the hook for those exercise, but I think the general stimulation of the program is causing her mouth tone to improve, cutting down on drooling and suctioning immensely!

As much as we cherish her, our whole life does not revolve around Abbie. With four other kids we get joy and laughter from all directions. An example is a conversation I had with Matthew on the way to the store a couple nights ago. He said that girls “freak him out.” I was wondering if he is entering the “freaked out because I’m starting to like them” phase, so I asked what was so troublesome about girls. He said, “Ugh! Mom, hardly any of them even know how to play dodgeball!!” I got a good giggle from that, and a bit of relief too. In his mind it’s still all about playground prowess.

Also want to pass on some terrific news I got this morning. Our friend Jim Winand is at Dr. Tennant’s clinic, being supported as he fights stage 4 colon cancer. His wife, Remle emailed me that she almost called yesterday morning to tell me they were quitting because it was so hard and Jimmy was in so much pain. Then, in the afternoon they met with Dr. Tennant…they are in the healing range, his body has responded, and they think the cancer may already be gone (they will be testing for that at the end of the week.) Praise God!! Please continue to pray for Jim’s pain to abate, and for their homecoming to be soon. You can check in on them at www.pray4jim.blogspot.com

God is so good to us, it overwhelms me!

Family Vacation and Fellow Travelers

We are back after a wonderful getaway to Kaua’i, with many details to share. But, before I dive into that I know many of you have been faithfully praying for Caleb, (“Kamakana” to his family), so I want to give you a current status.

I was able to meet his dad and mom, Brandon and Kehau, as well as his baby brother last Thursday. I didn’t know what to say at first except, ‘We have been where you are.” Brandon shared details of the event with me, saying that Kehau was at Bible study when Caleb was found. After they arrived at Kapiolani, Brandon was taken to a separate room (I knew just the room he was talking about.) They then came in and told him that his son had been pronounced dead. Hearing this, Brandon went running to the trauma room to pray over his son and call him back. As his prayers were going up, Caleb’s heart started beating again. God said, “YES!” As they asked about how Abbie is, I shared that although to human eyes it may look to some that we are still awaiting our miracle, God said “YES!” to us on May 3, 2004, just as their pleas were answered last week. Now, for both Caleb and Abbie it’s just a matter of walking the path marked out for them. I would have NEVER have chosen for it to take this long, but as I continue to see every day, there are abundant reasons.

I visited Caleb again today, in time to hear the nurse say they are turning the vent setting down to 8, and beginning to feed him more through his NG tube. I watched as he consistently over-breathed the ventilator, and also as his respiratory rate rose dramatically as visitors talked to him. “Look!” I said to Kehau, “Look at his numbers…he is listening!” Caleb has not had any swelling in his brain, so given what he has been through he is doing terrific!! I witnessed the same grace that carried Ray and I surround Brandon and Kehau. Please keep all of them in your prayers. They have set up a blog for Caleb: www.prayforcaleb.blogspot.com

Now to Miss Abbie…this was the first time that we had nursing help during a vacation. I was hesitant about this, not wanting her to be “left out”. Ray was equally firm in wanting me to get a chance to relax and spend time with the other kids. Since he is on Kaua’i for business every week, he was able to coordinate to have a fantastic nurse come each of the four days we were there. The first day I hung out with Kathleen and Abbie quite a bit, just to build up a comfort level. I learned what a broad background Kathleen has, but more importantly what a caring person she is. When Ray came to lure me to the pool, Abbie scowled as I explained that I would be right back. By the fourth day Abbie smiled as she heard Kathleen arrive in the morning! I decided that instead of trying to convince Kathleen about how great Abbie is doing, I would let Abbie do most of the convincing herself. Boy, did she!

Towards the end of the first day, Kathleen said, “She can see me, can’t she?? And..she’s listening to everything we say!” She was surprised at how in-tune and responsive Abbie was. The third day Kathleen almost teared up as she told me, “I asked her if she wanted to do her ballerina stretches, and she nodded her head ‘yes’, so we did them!” By the end of our stay in Kaua’i Kathleen knew, as the rest of us do, that Abbie is right there, just trying to make her body work again.

It seems that we may be getting a break from the “high liver phase” middle of the night wake-ups. The third night we were there the time shifted to 4am, and the first night we were home we all slept through the night!! When we arrived home a new air purifier was waiting, so I placed it at the foot of Abbie’s bed that night. I don’t know if it was solely responsible, but that night she slept all night with sats of 99. Her tone is incredible — soft, open hands, loose arms resting down by her side, legs that bend and move easily.

And, it seems we’ve hit another skin healing spike, both with her burn and with her trach stoma. The burned area is now all level, with no little valleys or pockets left. The few discolored spots left are fading quickly. There will come a day when all will be perfect skin again! Yesterday I heard this really funny whistling noise, and then realized it was air coming through her trach. The opening has gotten so small that it creates a little symphony when air passes.

Carol came to give Abbie healing touch yesterday and was overjoyed with how she looked. At the end of a very powerful session she said, “You know, since you went to Texas I think her healing is coming faster and faster.” I totally agree, and we are so excited!

Neurodevelopmental Assessment

Yesterday was the first time we had seen Linda Kane, Abbie’s neurodevelopmentalist, in 16 months. I was very curious to see what her impression of Abbie would be, because we had not kept up with the neurodevelopmental program she’d designed for us, but I felt like Abbie had made lots of progress in spite of that.

Linda was thrilled with how Abbie looked, what she’s doing now, and commented that she is “in a much different place” now. Yipee!! She made a comment that matched almost exactly something I’d verbalized to Ray the night before. Abbie is now in a place where she is ready to recieve all the input we will be giving her through the program. She’ll be able to take the input, use it, synthesize it, and move forward. It is so exciting and motivating! We can’t wait to get started!

Part of the assessment is recorded in a grid that covers six areas (gross motor, expressive language, fine motor, visual, auditory, and tactility). Each of these areas has nine levels of mastery. Abbie had a total of five level gains on this assessment, with additional progress within some other levels. This was amazing to me since this would be a good assessment even if we’d been faithful with the program.

Of course, on the day we saw Linda, Abbie was not feeling well. She began vomiting on Monday afternoon, so I put her on clear liquids for the rest of the day. We tried her normal food on Tuesday morning. That effort lasted about 10 minutes. I suspected that she might be in the midst of a liver cleansing period because it’s been 7 weeks since we went to Dallas. The liver replacement cycle is 6-8 weeks, so we’re right at the point where a whole “new” healthy liver may be ready to get rid of all the toxins she’s had stored in there for so long now. So, I started giving her liver cleansing liquids, and also began giving her an overnight drip of extra water and a liver cleanse I blended up for her. She’s been much happier on this regimen, but I suppose if I were nauseated I would be much happier on chicken broth, water, and juices than milk and eggs!

As I was reading through my new favorite book, “Energy Medicine: The Scientific Basis” there was a whole chapter on structural integration. Dr. Oschman covers in detail the effects of misalignments in the body (I was thinking of Abbie’s hips) and problems with the fascia (connective tissues). Abbie’s shortened tendons and adhering fascia in other parts of the body may be really impeding the flow of energy in her body, and therefore may be hampering her healing. The best approach to recitify this is something called “Rolfing”, or “Structural Integration”. After completing the chapter, I was convicted that Rolfing treatments could really help Abbie, so I googled Rolfing in Hawaii (thank you Lord, for Google) and found three practitioners on Oahu. The first one on my list had a phone prefix in my area, but a woman answered the phone and said he’d moved to Seattle. I was about to hang up the phone in disappointment when she asked if she could help because she is also a Rolfer. Hurrah! She lives very close to us, so I made an appointment for 3/23. I asked Linda Kane what she thought of Rolfing, and she enthusiastically endorsed it, saying many of clients have seen great benefit. “But,” she cautioned, “it’s really difficult to find a practitioner.” I smiled and told her that God has already provided for that need! I am anxious to try this. You can read about this approach at www.rolf.org.

So, we had a wonderful day yesterday. Abbie’s appointment was in Waimanalo, which gave us the opportunity to relish that beautiful drive. The weather was perfect, all was well…and then Ray came home with news that seemed so incongruent with the joy and beauty we’d been surrounded with all day. A co-worker called him on the way home because her little nephew drowned the day before, and is now fighting for his life in the same PICU where Abbie’s journey began. I couldn’t reconcile, as I looked out at the fading golden light of evening, that at that very moment a family gathered in a windowless room, overwhelmed with the grief and fear I recall too vividly. Please, please pray with us that the Lord would restore Caleb to his family!

A New Clock

Sometimes it takes a few days of observation to start putting pieces together. Last week Abbie started something new. Around 7pm every evening. all the tone in her body would disappear. We could do anything we wanted with her arms and legs, she became an absolute rag doll. By the morning her tone would have returned. This went on for about five evenings in a row, and then the time of relaxation shifted to 9pm. When that happened, she awoke in the morning as soft as she’d been the night before, and stayed looser than normal through the day.

Intrigued that the time was usually so exact, and that a two hour shift had changed the effect I wondered if it was related to the organ phases in her body. As I’ve described before, there are twelve circuits we are treating, corresponding to twelve organs. Each of these circuits has a “high phase” and a “low phase” during the day. I went to the textbook from Dr. Tennant’s seminar and found that at 7pm the pericardium circuit goes into high phase, and at 9pm it’s the “Triple Heater” circuit (related to eastern medicine…too long to explain here). That was sort of interesting, but didn’t mean much until I looked a little deeper.

Being a circuit, there are more things affected than just the namesake, so I found that located on the pericardium circuit are the cardiovascular and parasympathetic systems, while the Triple Burner has the lymph, eye and sympathetic system. Hmmm….parasympathetic and sympathetic. These systems are at the base level of control, and have not been operating correctly since Abbie’s injury. Could it be that we are getting progress in these systems which is showing up in their high phases?? No one can say for sure, since Abbie is the first to travel this path, but it is interesting.

The Organ Phase clock may also be playing into Abbie’s oxygen need. Lately she’s been needing extra oxygen from around 11am to 3pm in the afternoon. There’s no real change in her respiratory system, and her lungs sound the same, but her sats drop. Looking at the chart again, this time I was more interested in the what circuits were in low phase at that time, because their names were very familiar to me…Gall Bladder and Liver. Abbie has trouble maintaining voltage in these circuits. So, I am thinking that during their low phase, since they already lack voltage, they just drop off the cliff. As soon as their low phase is over, Abbie’s sats generally pop right back up and she doesn’t need oxygen any more.

So, Abbie’s new clock may have a lot to tell us about why some symptoms present and then disappear, what progress she’s making, and just how much the electrical system impacts overall health.

On that note, if what I am talking about sounds like gobbly-gook, but you’d like to understand it better, please get ahold of the book “Energy Medicine: The Scientific Basis” by James Oschman. Dr. Tennant gave me this book to read while I was in Dallas. I am still working my way through it but am absolutely amazed so far. It’s expensive for a paperback, but worth every cent!

We are taking Abbie to see Linda Kane, her neurodevelopmentalist, on Wednesday. Everything I am learning re-convicts me about the importance of doing a ND program with Abbie. It is going to challenge us timewise, but we are committed to getting it done each day. I will be curious to see what Linda’s assessment of Abbie is since we haven’t seen her in a while. Please pray that Abbie would be bright and alert on Wednesday morning.

School continues to go well. I am so impressed with the graduate students who are working with the kids. Each and every time we go they have done something to improve the program. It has also been exciting to watch their development as therapists, as they begin to independently assess and problem solve.

All our days are good, and I pray the same for you!