Sunday, September 30, 2007

Open Floodgates

A deluge of knowledge, information, and spiritual insight has been swirling through my brain and soul these last two weeks. It's difficult to know how to even communicate just the highlights. Most importantly, Abbie is doing well, as you can see in this recent photo taken by her nurse, Dayna.

The last update I wrote described the emotionally-taxing decision to postpone her surgery. As we came to that conclusion, I knew deep down that we would see blessings in the waiting time. They have already begun to arrive. I apologize in advance for some parts below that may seem too verbose, but I am truly writing this update for other brain injury families.

I have been communicating very regularly with Dr. Tennant regarding a plethora of new things he has learned in the past few months. If I've been flooded of late, he is covered under epic depths of new information! I've written somewhat about getting aggressive in dealing with the fungus in Abbie's body, and am working madly to get an update to the "Abbie's Healing" portion of her site completed. However, we have added several more new things since mid-September.

At the beginning of our journey into energetic medicine I read a terrific book call "The Body Electric" by Robert O. Becker, MD. His book outlines the electrical systems in the body and the critical role they play in healing and regeneration. Unfortunately, Dr. Becker is now declining into Alzeihmer's. When he was having a lucid day last year he and Dr. Tennant had a long phone conversation about Dr. Becker's current research, what Dr. Tennant is pursuing, and their mutual interests. Some time after that conversation, Dr. Becker's wife sent Dr. Tennant all of Dr. Becker's unfinished research, most of which revolves around the use of true colloidal silver as a means to dramatically increase stem cell production.

I say "true" colloidal silver, because what is usually available in health food stores as colloidal silver is actually in ionic form. We have found a source that produces high quality true colloidal silver, Deseret Biologicals, (, however they only sell their product, "Smart Silver", to licensed medical practitioners, so most people can't buy directly from them. Abbie is getting 2 teaspoons of 10ppm solution each day. This is not a "quick fix" type thing, but I am curious to see what it can do for her not only in terms of healing her initial injury but also in keeping her healthy in the meantime. There is some very interesting congressional testimony at the above website regarding what Smart Silver was able to do for malaria patients in Africa.

As interesting as the silver was, a breakthrough of much larger proportions was quick on its heels. Dr. Tennant recently met a physician, Dr. Mark Starr, who has written a book describing his hypothesis that like diabetes, there are two types of hypothyroidism. The first type shows up on blood tests, but the second type does not. In the last hormone panel we did, Abbie's TSH was very elevated, while her T4 was normal, which was an indicator that something was not right. Additional clues are her consistently low basal body temp. (96.0-97.0), cold intolerance, "myxedema", which is non-pitting swelling that is very apparent on her hands, feet, and even her cute, chubby face now that I know what I am looking at.

Please go to to see some stunning before and after pictures of patients who were treated for this condition. These pictures are old because mainstream medicine stopped treating Type 2 once lab tests for TSH became available. You can give Type 2 sufferers all the thyroid hormone you want and it won't fix the problem because it's not the absence of T4 that's the problem, it's actually an iodine deficiency that is often at the root.

So, we have started Abbie on an iodine supplement called "Iodoral", and early this week we will be starting her on a natural thyroid supplement called Armour Thyroid, which is made of dried pigs' thyroids. (Gross, I know...but I will do whatever makes Abbie better!) This approach could yield results in a very quick fashion if Abbie follows the path Dr. Tennant is observing in his other patients. I am THRILLED to think about this possibility, because many of the complications of Type 2 seem like a portrait of a brain injury survivor. In addition to the ones mentioned above, they include: anemia, dysarthria (difficulty moving jaw, tongue), thickened tongue, mental fog, slow relaxation phase for muscles, gait abnormalities, and altered Achilles tendon reflexes. While these challenges for Abbie were caused by the initial insult to her brain, I don't think we can expect her to recover if she has another condition producing the same symptoms!

Additionally, the thyroid is becoming more apparent as the voltage regulator in the body. This may explain why Abbie experiences such dramatic swings in her voltage, from very high healing range, to much below normal. Her regulator is faulty right now, so her body is acting just like any other electrical device with an inefficient regulator, and is just about as functional. We have had Abbie on DHEA cream since her hormone panel came back, but Dr. Tennant is finding that he cannot fix hormone levels with bio-identical hormones if he does not fix the thyroid. So, we will simply keep her on pregnenolone, since it is the precursor, and proceed with her thyroid therapy. I am hopeful that if we can get her thyroid fixed, many good things will follow. Just an aside, back when mainstream medicine used to treat Type 2, high cholesterol was one of the key indicators...if your interest is piqued, order Dr. Starr's book (around $15 at his site).

The day we were in the midst of the surgery drama, I was a basket case. Dr. Tennant called with news that gave me a boost out of the pit. He was on his way back from the office of a Dr. Danhoff, an MD/PhD who had been his physiology professor in medical school. They had not seen each other in years, and in the interim, Dr. Danhoff had begun working with a very concentrated form of Aloe. He treated hospice patients in Florida with it intravenously, and cured 90 out of 100 of them. Yep -- 90% of hospice patients got better. Perhaps because there was a none-too-happy chemotherapy research site just up the road, the FDA raided Dr. Danhoff's clinic, and effectively shut him down. Two years later the court ruled that the FDA was way out of bounds, and Dr. Danhoff had done nothing wrong, but you can't just start a clinic back up after two years. So, he found his way back to Dallas, and thankfully, back into Dr. Tennant's orbit. Recently a man who was experiencing 1000 tics per day was treated with an oral form, and in 6 days the tics ceased. A Parkinsonian patient treated intravenously had temors that had persisted for 15 years stop on the third day of treatment. They think that the product, which is called "Tremal" on the bottles we have, does something in the way of remyelination. But, honestly, I'm a mom, and I don't care so much about the mechanics as the outcomes!

The second day we had Abbie on Tremal she turned her head quickly to the right to look at her nurse and I. This particular movement will often throw her into a seizure/muscle spasm motion for a few seconds where her head will pulse repetitively to the right. This time there was none of that. I just stood in surprised silence, while her nurse, who didn't know about the Tremal, said, "Hey --- no extra moving!! That's great!!" Great, indeed!

So, we have much to keep track of and much reason for heightened observance and anticipation. We also have a couple more new things in the pipeline, but I'll wait until I know more before I write about them.

To get me ready for all of this, God took me away to be alone with Him, and alone together with some wonderful women. 14-16 September my dear sister, Katie Cheshire, (it's official -- we adopted each other) and I, along with sweet baby Iliana flew to the Big Island to attend a women's conference centered around a video series by my best girl, Beth Moore.

We stayed at Kalopa State Park, at 2000 feet elevation this rainy, lush spot reminded me of the Northwest, only warmer. I was blessed to have time alone, running on trails in the woods, and wandering around the grounds with my camera. I met a woman who is twice the mother I am, literally. Jessica is the mother of 11, including two sets of twins!! And, walking in to this remote place on the Big Island, I didn't expect to know any of the other 32 women besides Katie. Then, Lisa and Ellie Thatcher came up and told me they have been praying for Abbie for three years. I was stunned at how God weaves us together long before we know it!

The theme of the conference was "Loving Well", with the bottom line being that in and of ourselves we cannot do this. As always, Beth taught with a passion and clarity that ignited my spirit, and reassured me that just as I cannot love well on my own, neither am I Abbie's healer. There is only One with that job description, and I only have to follow His lead.

At the conference we were broken into small groups of 6 women each. Honestly, as we got our group assignments I was a little disappointed because there were women in other groups who I really wanted to get to know better. But, I realized God must have a purpose for placing me in a particular group. Boy! Did He ever! Out of the other 5 women, 2 had lost daughters in car accidents. One was part of a set of triplets, and died at 13, while the other was an only child who died at 8. What are the chances of that?? No other mother at the conference had lost a child besides the two in my group...what a privelege for me to harvest the wisdom they have gained from walking a narrow, difficult path. And, honestly, to remember how blessed I am that we still have Abbie...just to brush her hair, see her smile, and think about still having future with her in it!

I was relieved to be able to enjoy the weekend without Abbie's surgery looming so near. We have rescheduled it for November 21st -- the day before Thanksgiving. I am assuming it is because we will have so very much to be thankful for this year after she sails through the surgery.

Thank you for your patience during the lapses in updates. Don't ever worry that something is wrong. No news is good news, it just means that I am too busy actually being Abbie's and the boys' mom to write about it.

I hope that all the new things we've added recently will require more frequent updates as I share exciting news. Please pray for wisdom as we put these new things into place. Please also pray for Abbie's health. She is at the tail end of a cold that her Daddy and brothers graciously shared with her, but she just can't quite kick it completely. My heart is full, and I end this with a big smile on my face!

Thursday, September 13, 2007

A Hellish Hokey Pokey

We had one foot in , then one foot out, one foot in , and now both feet out...of the OR that is. This afternoon, after an emotionally draining, straining, nearly-shattering two days, Ray and I decided to agree to postpone Abbie's surgery.

As I posted Monday, we left Shriner's feeling good about the plan and ready to move ahead. We thought all was set. Apparently we were the only ones feeling that way. The team met through the day on Tuesday to discuss Abbie's case, and by the end of that day were not comfortable with proceeding for numerous reasons. The surgeon called us in the late afternoon to tell us the surgery was off. This took me by complete surprise, and my gears couldn't move fast enough to mentally take in such a huge shift in plans. I spoke to Ray on his way home, which precipitated his call to the surgeon. So, by the time Ray arrived, we were back to the "thinking some more about" just doing it on the 18th.

That night, once again in the thick of things was Abbie's boldest advocate, her pediatrician. She was on the phone with various folks until 11:30 last night. For those who may not know the details of the beginning of Abbie's journey, she would not be alive were it not for Dr L. intervening on her behalf when I was too overwhelmed with grief and shock to do so myself. In the years since, we've resumed our more routine relationship, but leading up to this surgery I've seen her angel wings poking out from under that white coat again.

By this morning, the surgery was back on, much to our relief. As Ray explained to the team, it has taken two years for us (or actually, me) to get to the point of being able to sign the consent forms for this surgery. Having it postponed at the last minute was mentally shattering, and I worried that I would not be able to psyche myself up again.

The phone calls continued through the morning, until I just thought, "We need some PEACE around here." So, I told Abbie we were going to "read our verses" for the day from Psalms. Since it's the 12th, we started there. When I got to verse 5 things got interesting. As I read, "Because of the devastation of the afflicted..." Abbie jumped in bed and looked right at, "This is for me!" I continued, "...because of the groaning of the needy (that part was for me:), Now I will arise," says the LORD, "and I will set him in the safety for which he longs."

The echo of Psalm 4:8, about lying down and sleeping in safety reverberated, and I knew this was a reminder of the words Abbie spoke the morning of her injury, "Jesus keeps me safe. Jesus keeps me safe!" All was well, and in my now-relaxed and calmed state, I started to wonder if perhaps we shouldn't just agree with the team and postpone. Their nervousness was starting to rub off on me, and there is no emergent reason to go into this surgery without everyone feeling absolutely comfortable and confident.

Then the phone rang again. Ray said, "I am going to ask you a question." That is husband-code for "I am going to ask you something that is either going to make you mad or with which you will violently disagree." Being a good decoder, I braced to be maddened, and then heard, "Do you think we should just postpone this?" I smiled at how God had worked in our hearts at the same time. So, at the end of all the drama it was actually an easy decision that flowed from a unity of our what is best for Abbie, and if that means later, so be it.

Abbie gave me big grins when I told her that we actually won't be going to the hospital next week. Like me, I know she is ready but not excited about doing this. But, the prayer list remains the we just have more time to pray!! We will hopefully have the new date by the end of this week. Until then, thank you so much for the encouragement that has been flooding in from all directions. This has been a very trying time, and your emails, phone calls, and prayers have buoyed us through some very rough waters!

Monday, September 10, 2007

Many Answered Questions

We had four well-spent hours at Shriner's this morning, as we met with their pediatrician, a nurse practitioner, the surgeon, the anesthesiologist, dietitians, and care coordinators. I wrote an entire page of questions last night so that I wouldn't forget one in the midst of emotion and detail today. After about half an hour the surgeon had answered all of them except one...where the surgery will be done. When I broached this questioned, he just looked at us squarely and simply said, "We're doing it at Kap." Oh, OK...end of discussion. But, we still wanted to know what brought him to that conclusion.

Abbie will be recovering in the PICU after coming out of surgery, so he feels that it just makes sense to do the surgery in the same place. We agree, although the decision to do the surgery at Kapiolani in no way reflects poorly on Shriner's, for whom we have great respect and trust. After receiving many answers, and now better knowing what to expect when we see Abbie for the first time, I am grateful that we are going to the PICU. She will have a few lines in, and most likely a central line in her neck. She will probably remain on a ventilator through the first night. She will also be in a cast extending from the bottom of her ribs to her toes. I will be glad to be surrounded by a critical care staff that we know (and love). Caring for a sick child on a normal pediatric floor is very demanding for the parent, and I was unsure I would be able to stay on top of her pain during the first few days. The anesthesiologist had some very good ideas about this.

Just prior to the surgery Abbie will receive an epidural, which she will keep for a couple days. This will allow us to aggressively control her pain without drugging her into a stupor. As I'd suspected, the first 3-5 days are going to be very tough, pain-wise. I'll be writing a gargantuan prayer list at the end of this update, and pain control will be very high on it.

I've been asked several times, "What exactly is going to be done?" Well, here's the medicalese version: bilateral proximal femoral varus derotational osteotomies, right pelvic acetabuloplasty. Here's the mom-translation: a surgery on both sides, removing a 1" portion of each femur, turning the head of the femur into the proper rotation and reinserting into the hip socket, then securing it with a metal blade and using screws to connect each end of the femur at the cuts. On the right side they have to do some reconstruction of the acetabulum, using the bony material removed from each leg. This is the most complex part of the procedure, and will necessitate a second incision on the right side. I wanted to know where the incisions would be...from the "bump at the top of the leg" to about halfway to her knee on each side, and then from the middle of her groin, around the top of her hip bone to her back...that's about when I stop asking those kind of questions!

We're now very aware of the risks, complications, and potential challenges during recovery and beyond. We are realistic on one hand, but also very optimistic. After all, this is Abbie we are talking about. She was on her game today! She answered many of the pediatrician's questions herself, using her switch, and even laughed when the surgeon was checking her belly. When the blood pressure cuff went on, she immediately looked right at it and scowled. I asked the surgeon what the critical factors for success were, and the only one that was really key to him was the health of the child going into the surgery. In his experience that is the major differentiator. Our girl is healthy as a horse, so that gave me a boost of confidence.

So, we are scheduled for next Tuesday, 9/18, at 1130. Abbie will probably be in the OR about 6 hours, so by the time we are settled in the PICU it will be late in the evening Hawaii time, and way after bedtime for everyone else. But, I will do my best to post timely updates and fresh prayer requests.

Speaking of prayer, here is the monster list:

1. Complete success with a perfect outcome; wisdom, skill, and an "in the zone day" for the surgery team.

2. Effective pain control, and a quick diminishing of pain as the days pass

3. Minimal blood loss (100cc expected) so that Abbie doesn't need a transfusion.

4. No infections!

5. Quick recovery from the anesthesia with no complications.

6. Protection of her respiratory system; no events during surgery or recovery.

7. Rapid return of stomach and gut function so she can tolerate her normal diet.

8. No nerve damage. On the right side, her sciatic nerve will very much be "in the neighborhood" as they reconstruct her hip socket.

9. For necessary equipment and nursing staff to be in place for discharge.

10. For grace, peace, assurance and hope.

As I sat down to write this tonight, Ray's email account was open, and seeing a name we are fond of I asked if I could open the message. Again the tears flowed as I read, and I want to share this with you:

This is Mia Letterie from Seattle. I have been thinking about Abby day and night. I have been praying for Abby as well as keeping up with Tiffany's constant postings on I hope that her surgery goes well. Here I have attached a story that I have been meaning to send to you. In class last year we were asked to pick a hero. My first question was is it ok if our hero is younger than us. My teacher replied yes. The minute he said yes I knew who I was going to write about: Abby. So here is my final copy of the story. I have gotten everything from the website. I hope it is close to right and I hope that you enjoy reading it!

Well, Mia - your story was spot-on, especially the part about Abbie being a fighter. We loved it, and one day Abbie will read it for herself!! And you know what? My hero is younger than me, too!

Saturday, September 08, 2007

The White Line

The relaxation of a wonderful Labor Day spent on the beach at Sherwood Forest was consumed like dry tinder in the days that followed. On Tuesday we had Abbie's pre-op appointment with her pediatrician. She is good and healthy, but her doctor raised some concerns about where the procedure will actually be done. Shriner's Hospital, where it is scheduled to be performed, is right across the street from Kapiolani, where Abbie has received all of her other care. It is likely that she will be recovering, at least immediately, in the PICU at Kapiolani, since Shriner's doesn't have intensive care patient settings. Dr. L. wondered why we didn't just have the surgery done at Kapiolani, in case of a "bad event" during the surgery. We honestly hadn't considered this before because we have a lot of faith in the folks at Shiner's, and we have our minds and hearts set that Abbie is going to fly through this, without a "bad event" in sight.

Wednesday morning brought a flurry of phone calls between me, Ray, and Shriner's, all focused on planning for a worst case scenario. Spending that much time thinking about a heartbreaking outcome put me into a pea-soup fog. I didn't realize how non-functional I was until I missed a long-awaited meeting with a friend, and was stumbling through the rest of my day grasping, weeping, and recollecting myself.
As we've done so many times during this journey, we talked out our fears and prayed through them with our small group that evening.

We fully anticipated the surgeon would not support moving the surgery, but did not hear anything from him on Thursday. What did Tom Petty say about the waiting? He is right, it's the hardest part. I was still socked in, but at least I'd turned my headlights on. As I did so, a curious thing began to happen -- bits of encouragement began arriving from unexpected places, weaving together to form a line I could follow through the fog.

On Thursday I received the itinerary for a women's retreat I will be attending next weekend. The coordinator included postcards with a Scripture verse, a different one for each woman. She said she'd assigned them randomly, and just wanted us to meditate on them until next weekend when we could share what meaning they had for us. My card said, "Psalms 4:8" Like a treasure hunter, I opened my Bible with expectation. Not to be disappointed, I read, "In peace I will both lie down and sleep, For Thou alone, O Lord, dost make me to dwell in safety." I just grinned, because one of the first things to go during times of heightened stress is my sleep.

On Friday I took Kyle to the pediatrician for a physical. Ray met me there with yet another birthday present for Abbie (a Hello Kitty backpack, and makeup kit which she LOVED!). He also pulled out a card addressed to us. The front read, "We don't always know what the plan is, but we always know there's a plan", while the inside said, "Relax and know that God's got it all worked out." At the bottom was Luke 1:37, "Nothing is impossible with God." Passengers disembarking the elevators must've thought it strange to see a woman choking up in the hallway, but Kelle, you will never know how profoundly you impacted spoke God's words into my life, and His love into my heart!

We still hadn't heard from the surgeon by late Friday afternoon, so Ray called him. It turns out that he isn't absolutely opposed to doing the surgery at Kapiolani, since Abbie will probably go there to recover after the surgery. But, since it is such a major procedure, it requires a lot of equipment, which they have in place at Shriner's. The staff at Shriner's is also very adept at supporting him during the surgery because they do it all the time. So, it comes down to a balance of comforts. Will we be more comfortable at Kapiolani where we know all the staff and she can have the same anesthesiologist she's always had, with the intensive care resources in the same building, yet have a surgeon working in a place where he is not quite as comfortable, with a staff not quite as used to doing this procedure? Or, will we be more at ease at at Shriner's, with a new anesthesiologist, and the emergent and intensive care resources across the street, but with the surgeon working in "his backyard.?" We honestly don't know the answer to that tonight, and will talk it out at Abbie's pre-op appointment on Monday. Please pray for wisdom for us in this matter, it is a big decision. We've gotten used to our fairly stable life that has been devoid of decisions of this magnitude for quite some time. Truly, we really could use your prayers right now!

Today brought a huge highlight for me. Kapiolani was having the last day of a radiothon at John Domini's, a beautiful restaurant filled with views of water, waves, and Diamond Head. We arrived just a wee bit late, and were seated at a table with Jerry Coffee and Susan Page. For the benefit of those who may not be aware of his story, Jerry was a Navy Commander when he was shot down over Vietnam. He spent the next 7 years as a POW, often in solitary confinement. I read about his ordeal as a teenager, and it made a lasting impression that I often called to mind as I later served as a military officer myself. We made small talk for a while, and then just enjoyed the show. As I looked at him, framed by stunning scenery, sitting next to his beautiful wife, I thought, "There IS life after the storm, and it can be radiant!"

Finally, Susan asked about Abbie, wondering why she was in a wheelchair and being fed through a tube. As we shared the beginning of her story it reaffirmed in me just how far she has come. Susan told her, "You are already a miracle girl!" Amen to that!
As we stood to go, Jerry's time as a POW came up; I told him I read about it as a youth, and that really, as I thought about it, POW life is about the only thing I can compare this journey to..I am not in control of it; I do not have a rewind button to change it nor a fast-forward button to hurry it, I do not know when it is going to change or end...and I wouldn't give it back if I could. As Jerry said, "I wouldn't pay a dime to do it again, but I wouldn't give it back for a million dollars." He also said one other thing that is going to stick with me. Each day, at the end of the day, no matter what kind of day it had been (and I know his "bad" days were much more brutal than mine), he would just think, "I am one day closer." Never any doubt, just faith. One day closer.

Jerry Coffee has long been one of my heroes, and I believe God allowed our paths to cross today to bring that thin white line into fluorescent brilliance. Like a driver on a foggy night, I need only follow that line to reach our destination. Abbie continues to improve each day. The hyperbaric treatments are a blessing, and are helping with varied things like her vision and her muscle tone. Lacking a driver's license, she is already much better than I at following that white line through the fog. She is unshakable, moving ever forward toward being whole again. She humbles me as each day I watch her move one day closer. Never any doubt, just faith. One day closer.

"At some time or another we all get shot down, we are all POWs, "prisoners of woe." Be tough. Bounce back. Learn not just to survive, but to go beyond our survival: finding the purpose in our adversity." -- Captain Gerald Coffee