A great Easter

Abbie and her "bubby", Kyle


Yesterday was just a good, good day. I don't know how many times Ray and I said that to each other, but it felt new and true each time. The realization that this is yet another last -- the last Easter I will have all my children with me, made it very sweet. Church was wonderful, and then we went to brunch where they had a special room set aside just for us. Quiet and most importantly, air-conditioned.

Abbie's brothers humored me as I led them to the Easter Bunny so I could have a picture with all the kids in it. Abbie was a little upset that we'd gotten there too late for the egg hunt. Actually, we were eating when the announcement for the egg hunt for 4-7 year olds rang out. She jumped in her stroller and looked at me. I felt a little sad for her, but told myself it was too hot and sunny anyway. Besides, the Easter Bunny had given each of the kids a basket, so naturally Abbie ended up with all of them!

She did marvelously, which is always a praise during a long outing. I don't know how she does it, but she seems to grow more beautiful each day. We are blessed.



The contents of my heart, all in one picture

Where the Spirit of the Lord is....

I've been mulling over in my mind this week how to put words to our Spring Break adventure to the Cascade mountains in Washington. Of course, since this is Abbie's site, most of the news should be about her. She did wonderfully on the plane both ways. Managing to stay awake, not need oxygen, and keep me and Genevieve plenty busy, just until we began our descent, at which time she nodded off...BOTH WAYS.

We had been practicing snow angels in the weeks leading up to the trip, and were looking forward to seeing an Abbie angel in the snow. But, two conditions conspired against us. The snow was welcoming Spring, getting hard, icy and not good for angel-making. We also found that the dry, cold, thinner air was not Abbie's friend. Breathing was not easy for her up there, and she was on oxygen for at least part of every day. We did get to take her for a couple of walks on the nicer days, but most of her time was spent on a couch near a big fire place.

It's always difficult to relish the fun parts of a vacation if Abbie can't join us, but I committed to opening my heart to the joy of my boys, without being overwhelmed by missing our girl. So, we did have some adventures! Suffice to say, I feel fortunate to still be a mother of five. A snowmachine trip saw one boy crash into a parked truck 300 yards into our trip (he rode with me after that), another boy bury his machine in a ditch (requiring an hour of further misadventure to get it out), and yet a third boy send his machine sailing off a cliff...fortunately he heeded my screaming "JUMP" before it disappeared from sight.


(This is before Ray's machine landed upside down on Chase's trying to get it out, before we buried both of them with the tow rope pulled so tight between them we couldn't unfasten it, and before my wondering about how long of a hike down the mountain it might be...)

This picture was taken with the aforementioned cliff behind us, moments before that incident. I'm glad it's not the last one of all of us!!





Realizing that motorized snow vehicles may be dangerous for our progeny, we diverted to snowboarding. I hadn't skiied since I was a teenager, so I thought, "If I have to be bad at something, I might as well be bad at something new." Everyone warned me the first three times are tough. Oh my -- they didn't exactly spell out how hard the getting up was -- I knew about the falling down a lot, but the getting up about wore me out! The helmet earned it's price, but by Day Two, I was getting better. The older two boys had long since abandoned me for the blue and black runs, but it was a blessing to have quiet moments on the chair lift with the twins.




We got to see my mom and Auntie Hazel, my sister and her family, and some precious friends in Seattle. A heart-filling time!
But, even with all that good stuff, I couldn't get focused to write. Sometimes when that happens it means that the real subject of the post hasn't been revealed yet. That's what happened this time.

We visited a new church tonight, because we have a commitment tomorrow that will prevent us from attending in the morning. We knew many of the folks in attendance, so felt comfortable right away, and jumped right into the singing. A familiar song, but sung with such purpose that it came alive -- especially by the number of people dressed in white shirts. Being new, I had no clue what that was all about, and surmised they were a ministry group of some sort.

A special speaker came to the podium to address the group about a recent ministry trip, taken by the group in white, to a prison in Arizona where 2000 prisoners from Hawaii are held. Pastor Roy was special, not only because he strived for two years to make this vision a reality, but because he spoke to us as a former prisoner. Repeatedly he extolled the "God of miracles" who saved him from a life sentence to serve Him, and who removed every roadblock for the Arizona trip -- and there were many, like a fundraiser that ended up losing twenty thousand dollars, but saw many bikers come to Jesus.

As he spoke about insurmountable odds, stones in the path, and crying out to God, you can imagine the twinge of identification that began to grow in my heart. As he described the prison environment, I pictured Abbie's body. Hearing about the confined men, I saw Abbie's spirit. Moment by moment the emotion grew deeper; I didn't know we were still wading in the shallow end.

Then, there they were, on video: tough, hardened, stone-cold, abandoned, convicted, confined men, filing into the service. Slowly, faces softened, smiles came, tears followed. Heads lifted, bodies stood. And, then I heard it...the song we'd sung earlier with such gusto, but these men were shouting it. And, I thought, if they can sing that between those walls, then I can sing it over my girl with the same intensity, knowing that it is true. "Where the spirit of the Lord is, there is FREEDOM."
No razor wire, shackles, constricted muscles or weakened bones can change that fact. Praise God.

It wasn't over yet, though. I watched the folks in white weep during Pastor Roy's talk and the video, moved at how deeply they'd been affected by the trip. He called them forward, and introduced them not only as the prison ministry team, but as former prisoners, each of them. My jaw dropped. They wanted to sing and sign for us. "Lord I give you my heart, I give you my soul, I live for you alone...." More than thirty radiant faces and redeemed lives proclaimed the transformational power of the gospel. All shame had been washed away. The chains of bondage remained behind in a dust-covered past. They were free -- truly free. The God to whom I pray for my girl is the God who had freed and restored them. Big men with tattoos, older aunties, and lithe young women -- what was broken is now whole, and what was lost is found. This image will remain in my mind and soul when I pray to the Lord who has already done the same for Abbie.

The right motivation

I'm blaming this lapse on Abbie....hooo, boy, has that girl been keeping us busy!!

She is recovering so well from her trach surgery. Her throat looks beautiful and the scar is fading away quickly. Last night I kissed her all over her neck, and paused there as I realized how long it had been since I could do that. The last time was the day they took her into surgery, with an intubation tube in her mouth, plastered to her face with what seemed like yards of tape. When she came out of the trach surgery I was overjoyed to see her face and kiss her lips, but her neck became a "medical zone" for the next four-and-a-half years. So precious to be able to kiss that very soft skin and feel her breathing. God is faithful!

Physical therapy is also going well. Her standing program finds her standing more and more erect every day. As we get closer to vertical she starts wiggling, trying to move her legs. She is so anxious to begin learning to walk again! I remind her that we need to get those bones strong enough before we can stroll down the hall again. She is moving swiftly forward in that regard, and we are pleased.

But, we have discovered what is most motivating to her in therapy, which I believe is probably a universal motivator for little girls. She wants to talk, to chatter, to be HEARD! Jayna (one of her PTs) had her lying on the table and was holding her leg in air, asking her to bend her knee and bring her heel to the table. She did a couple times, but was unenthused. We then put her voice-output switch on the table so her heel could hit it when she brought it down. Wow! Talk about performance improvement!! Duh -- I don't like doing hard work for no reward, and neither does my girl.

Today we programmed sequential messages in the switch, so Abbie "said", "I did it!", "I did it again!", "Look at me go!", "I am SO good at this!", and "I am the best!" She did very, very well, and her movements were much smoother.

We have up days and down days, but try not to look at each dot on the chart, focusing instead on the general trend. (Sort of like the way we have to watch the stock market these days....) From that viewpoint, Abbie's line is rocketing right up the chart again, and it is a fun thing to watch!

A Big Step

As I sit on the couch to finally write a more in-depth update about Abbie's surgery and recovery, I sigh and smile at all that has happened in the last few days. As usual, leading up the surgery I didn't realize that I was operating with a large weight on my back, and on my spirit -- my self-awareness is a work in progress. Now that it has been lifted, I can see in hindsight how very stressed I was, and now it feels that I am flying through each day!






This is a picture from my phone of Abbie in the pre-op area (sorry it's a little blurry). Can you tell she was ready for her hole to be closed?? For the first time they let me walk with her all the way into the OR and then talk to her while the anesthesiologist put her to sleep. What a challenging blessing. I was so happy to not have to leave her until the last second, but seeing the OR, the equipment, the staff, the very white walls made what was about to happen to her very, very real.

Dr. T, the ENT did a scope of her throat first to ensure there was not any blockage that would prevent closure of the hole. When I didn't hear anything from the OR for an hour, I knew they'd gone ahead with the surgery. Fortunately, my faithful friend Katie arrived in the cafeteria to wait through yet another surgery with me -- and she brought great food!!

A couple hours passed, and as Abbie moved from the ENT team to the GI/General Surgery team I was thrilled to see her ENT come into the cafeteria carrying photographs of the procedure. As I mentioned, this is a very new technique, so they took pictures to better describe how it's done. Looking at an open wound on my daughter's throat is not something I'd readily do every day, but I was thrilled to see how the closure of a large (3mm by 15mm) hole was done so beautifully.

We met the GI and surgeon in the recovery room, and they, too, had pictures -- again, none that we will frame and place on the piano, but interesting none the less. The endoscope showed some irritation on the esophagus, which we'd expected given her reflux lately. The stomach looked fine -- the area where there may have been an ulcer was caught up into the closure of her previous G-tube site, so we couldn't see anything there. But, then we saw lots of small bumps at the beginning of her small intestine, which the GI biopsied.

I have to admit, at seeing those, I thought, "Sheesh -- I really don't want to deal with abnormal intestinal growths, too. Can we just stick with the current buffet of challenges without adding more to our plate?" The results of the biopsies came in a couple days later, and are within the normal range - so for now we can just remain seated at the table, working through our entree of bone density/hip recovery, and the side portions of respiratory, spasticity, and diet issues.

We stayed in the hospital until Saturday morning, because after the trach surgery, Abbie had two little soft tubes sticking out of the incision, to drain air that may have collected in the area. One was removed on Friday, but the surgeon wanted to wait until Saturday to remove the second. Ray and our nurse, Rae, helped get Abbie settled at home while I went directly to the twins' school for a volunteer shift. I'd had to cancel my last one, so I didn't want to flake out twice in a row. As soon as I arrived home from the school, I changed clothes while Ray patiently paced, and then we headed out the door for Waikiki. We had a black tie event that evening, so he surprised me by booking a room in the hotel hosting the ball.

I felt like an almost-put-together grown-up wearing heels, jewelry AND make-up at the same time. We got to catch up with many good friends. It was especially encouraging to run into people who were completely up to date on Abbie -- one said, "I was in Cancun this week, but was able to check in after surgery...how is she doing now??" Amazing. Then, Ray and I both got to sleep all night. THAT was the real treat of the event. We came home completely refreshed, all the stress and worry of the week completely washed away.

Abbie is not needing any pain meds now, and slept through the night, satting 98-100 last night. It seems that she's turned the corner pain-wise. She is not hesitant to cough, and is no longer complaining when she does. We made it back to the beach this morning, for the first time since her surgery. God met us with the perfect weather -- we could see Haleakala on Maui, as well as Lanai and Molokai. The air was still, but cool, the mountains were unshrouded and it seemed, for those moments, that all was right in the world.

Thank you for praying our girl through yet another obstacle. Waiting in the pre-op area, I reminded her that she would never be alone, and that many, many people were praying for her. The smile you see on her face above matches the reaction she gave me to that reminder. Bless you all!!

Abbie is Awesome!

Just got home to take a quick nap while Ray watches over Abbie, but wanted to give a quick update before I head off to sleep.

Abbie did amazingly well through the 3.5 hours of surgery, and even in the recovery room was coughing all the mucous and blood up herself. That allayed my only fear about closing her trach stoma. If she is willing and able to cough so strongly right after surgery, I have no doubt she will be more than able to take care of her airway independently when she is healed. HURRAH!

Her G-tube button was moved more towards the middle of her belly, and is already much more comfortable than her old site.

It seems now that she will be an inpatient until Saturday. But, she is comfortable, and doing well.

Thanks to all of you for your prayers -- they were powerful, and God just HAD to listen. Abbie was grinning in the pre-op area as we changed into the hospital gown. She knew it was time, and had no fear. Thanks to knowing all of you were praying for her, I didn't either.

God is good!

Perfect Timing

So many days when my heart is hurting or my spirit is weary I plead, "Hurry up, Lord...please." Yet, even while the petition is leaving my lips I am reassured that everything is happening at exactly the pace it is supposed to, even when that is to my disappointment.

We got a huge exclamation point to that thought today when we visited Abbie's ENT for her pre-op appointment. I was curious about how the surgeon was going to close a hole that is fairly big. I found out that normally it requires taking a piece of cartilage from the ribs (another incision...ugh), and then using it to fill in while the surgeon pulls both end of the hole together. The normal outcome is that a divot remains in the throat, and, even more importantly, the windpipe is often narrowed during the closure procedure, to allow both ends to meet. This narrowing can lead to respiratory distress either immediately after surgery, or down the line. Ugh again.

But, but, but...God's stopwatch for Abbie was beeping, "right time, right time" today. Finally. After scheduling this procedure four times in the last two years He showed us why we waited. Abbie's surgeon has recently begun using a resorbable material (meaning over time it disappears into the body) to do closure on large trach stomas. As far as she knows she is the first to use this material for this purpose. There are huge benefits for Abbie: no cartilage needed from the rib, no divot left in the neck -- it will be smooth with just a straight scar across it, and her windpipe will not be narrowed. It is likely that Dr. T. will publish an article in a medical journal after Abbie's surgery so that other surgeons could consider using this technique. All of the things that would have concerned me about this surgery vanished in an instant, thanks to the brilliance of Dr. T. I cannot explain how incredibly blessed I feel.

We'll plan on spending 2 days in the hospital (for her trach, not sure what the GI will say yet). So, perhaps at this time next week we'll be home with our ready-to-swim Abbie. I now that she'll be tremendously more comfortable. She cried in her carseat on the way to PT today, because her tummy just hurts so much. We had to lay her down the backseat on the way home. Please pray for her comfort for the next five days. It is stunning to watch one little girl endure so much, and yet smile and press on.

Revolving door

A day full of fruitful phone calls resulted in us being all set for the surgery to close Abbie's tracheostomy stoma and move her G-tube button to a new site. She will be going to the OR at 2:30 pm next Wednesday, Feb. 18. I found it interesting that, this being Abbie's third surgery in four month, she had one on 10/20, 12/19, and now 2/18...I told Ray, "I sure hope nothing happens on 4/17..because obviously we have a little pattern going!" It seems the Recovery Room has a revolving door with Abbie's name on it. Rest assured, next week I am ripping it out and burning it!

Each part of the procedure should take about an hour. I know we'll be spending at least one night in the hospital, but am unsure of the plan after that. Abbie was thrilled when we told her that she won't have a hole in her throat any more, but was apparently hoping that stoma-closure was the Tooth Fairy's side job, because she was extremely upset to hear that this involved another surgery. I tried to reassure her that this time she won't be waking up with huge casts, and that the pain won't be anywhere near hip surgery or broken femurs. Little consolation to a pretty traumatized little girl. Please pray for her to be physically AND emotionally ready for this.

I am not sure how to feel, either. Life, particularly fun things like swimming and going to the beach, will be so much easier without an open stoma. I was so excited to get everything coordinated, but now that the process is complete I find myself in tears with that now too-familiar knot of fear and foreboding in my stomach.

Two things (well, actually one in two different packages) save me.

The first is that Abbie and I have been taking morning walks to the beach. The beauty astounds me afresh each time we visit.

These are some pictures from my phone this morning, all taken from one spot:











Aside from getting some perspective on just how huge God is, being at the beach reveals other lessons as well. Like how the morning sun always glints across the water to land right at our feet. As we walk down the beach it follows us like a spotlight, as if we are the only visitors, the only ones worthy of its attention. I'm sure every person on the beach feels that same way -- as somehow the sun manages to focus on each of us individually. God is like that. Just because another is basking in the glow of His love, or resting in the calm of His protection, does not mean that His eye is off us for one second. We are each the star of the show.

The waves on the shore are small and calm, as bigger waves hit breaks a little ways off the shore. I love hearing the distinct sound of both, and realized I am so grateful that God speaks to us in both tones of voice. When we are young, new in faith, weak, despairing or weary, He is gentle, allowing His love and lessons to lap at the edges of our hearts until we absorb them.

When we are ready, He calls us out to the deep - to the spray blowing from crests of waves as they fight their way down to the sea again, creating the roar that never ceases. I am so glad that He is both gentle and wild, and that these qualities exist on a continuum. Those little lapping waves lead my eye, and my heart, right out to their fierce brethren. I can wade or I can dive in, but either way I find Him.

Abbie loves the beach as much as I do, and the morning light is precious time for us to be together in the unquiet silence.

The second saving grace is just once again finding God in His Word. My favorite teacher, Beth Moore, is taking me on another adventure -- "Believing God" -- boy, is this appropriate timing for this study! One thing that's hit home again is the utter effectiveness of praying God's words right back to Him. So, if you know any scripture that you think would apply to Abbie in the next week or two, may I be so bold as to ask you to pray it over her?

We went to therapy today for the first time since she broke her legs. It went well, and she stood beautifully. It's just hard knowing we are going to have another hurdle before she can really zoom. I am hopeful, though, that once her belly and throat are comfortable, it will be even easier for her.

I feel sometimes lately that we are constantly asking for prayer. As I typed that with a sense of regret, I realized, "We ALL need constant prayer!!" So, I just want to remind you that Abbie does love to pray for people, so please email any requests you may have for us to varasix@aol.com, and then let us know how things turn out. Almost as much as praying, Abbie loves to hear " the rest of the story."

As this Valentine's Day approaches, please remember, it doesn't matter if you are married or not, engaged or not, in love with another person or not -- there is Someone who is madly in love with you. Trust me, He meets me at the beach every morning.

Tummy Troubles

We met our new, wonderful Gastroenterologist on Wednesday afternoon. He spent a lot of time with us, listened well, and came to two reasonable conclusions. I was so relieved that an infection wasn't one of them!

Problem #1 is that it seems that the pain meds Abbie needed after she fractured her femurs (much more than she needed after hip surgery) slowed down the rate at which her stomach empties. This allowed for a build up of acid, which appears to have really targeted the irritated area inside her stomach where the balloon that keeps the G-tube button in places rests. It is also giving her reflux at this point which explains the extra secretions, the vomiting at the end of meals, and why she can't tolerate her usual feeding volumes or rate. He started her on 3 months of Prevacid to give the ulcers a chance to heal and deal with the reflux. I am not fond of acid-blockers because they hamper nutrient uptake, but in this case we don't really have a choice. I did confirm with him that this is a short-term option. After her dose this morning, her muscle tone just about disappeared. She was so relaxed on my lap in the rocking chair that I didn't want to move, ever. So, it seems the acid, the ulcers and the reflux have been greatly increasing her muscle tone lately.

Problem #2 is that, as she has grown, her G-tube button has ended up right under her ribs. You really can't touch her button without feeling ribs. This means it is likely that the stomach lining is getting rubbed between her ribs and the balloon each time she breathes, move, coughs etc. It is worse when she sits up, which explains why she cannot tolerate sitting at more than a 45 degree angle, and even that is difficult after a while. What a conundrum. People with reflux need to eat sitting straight up, but her button pain prevents this...leading to worse effects from the reflux. The button has to be surgically moved. Ugh. Can I just admit that I am REALLY weary of seeing the OR recovery room, and of having to put Abbie under anesthesia.

We decided to try another type of G-tube button in her tummy to see if that would buy us enough time to coordinate this surgery with the trach closure surgery I was planning on scheduling later ,in the Spring, thinking that her ENT would not close the stoma during the winter.

Abbie was in so much pain last night, I called the ENT's office to schedule "sooner rather than later", thinking it would mean March. Iwas shocked when her nurse said, "Oh! I have a hole in next Friday's OR schedule. Let me see if I can get the GI and surgeon coordinated for that time as well." Ummmmm - hold on, let me gather myself. Back to the OR in a week? Another groan. But, it would be great to get our girl through this and out the other side.

I am still waiting to see if the docs can work their schedules out for 2/6, but if not it seems that we will certainly do it sometime in Feb. Would you please pray for Abbie's comfort until then? She didn't tolerate her first feeding, and then couldn't even keep water down when she was in the stroller for her appointment.

On the very bright side: we saw her orthopedic surgeon today and he was pleased with the Xrays, saying her bone strength is sufficient to start standing and going to PT again. I put her in the stander tonight, just to see how she'd do. She stood for 10 minutes, which was longer than I'd expected, and she stood at a higher angle than I thought she'd tolerate. She was VERY relieved and happy to be standing. Many smiles. Afterward, she fell into a peaceful and contented sleep, even with four noisy brothers in her room.

I think that what I see as mountains or hurdles, Abbie just sees as "the next thing" and is willing and anxious to get on with it. She humbles me.

Saying it out loud

I have to admit...I dragged myself to the computer to blog today. Nothing is dramatically wrong, but sometimes it's harder when things are just a little bit off, only slightly "not right." That's where it seem we are with our sweet girl. She still gives smiles by the buckets, is enjoying reading, painting, and her movies, but is just not herself.

I think it has to do with her tummy. We will see a new GI this Wednesday to see if together we can figure this out. To admit my paranoia, I must tell you that I've read of several families recently who've dealt with rather aggressive and totally unexpected infections around G-tube sites. One of the girls died. So....as she refuses to sit in her stroller, whimpers as she reaches for her knees, and cries sometimes when her feedings begin my mind rockets off the launching pad directly towards the darkest thoughts and worst scenarios. I am just hoping for answers. By now, I can deal with just about anything as long as it has a face and name.

We are rebounding from a tiring and emotional week. Ray was out of town, so of course the stomach flu came to visit. First RJ swooned, then Matt swayed, and by Friday afternoon I collapsed in a dysfunctional heap. Matt (recovered by then), stayed awake in Abbie's room until after midnight so that I could rest on the floor. He ended up sleeping in the recliner - my loving, caring hero that night.

Saturday brought to the fore the emotions Ray and I had been sorting through all week. That evening was a wonderful event celebrating Kapiolani hospital's 100th birthday. This is where Abbie's life was saved, and where Ray serves as CEO. The program was all about the impact of the hospital -- from being greeted by young children in t-shirts reading "Beating Leukemia" or "Born Under 2 pounds" (my tears started early), to vignettes from families who received life-saving care. It was finally Ray's turn. He usually only speaks as CEO, but this night he was also Abbie's dad, which required me to find photographs to accompany his short speech.

This task broke my heart. As I wrote to a friend, "Time has helped dull the razor edges of our loss, but seeing her pictures from before makes us think, once again, what could have/should have/would have been." Honestly, I was dreading seeing her bright, shiny, sassy picture on those giant screens.

Flash - there she was - brand new yellow sandals with white flowers, a dress with the connected panties unsnapped and hanging down, smile to light a stadium. Flash - on a ventilator, wearing her Elmo hospital gown. So small, so hurt, so helpless. One more flash brought our smiling girl back, in the pool in the arms of her Daddy. Older, different, but as beautiful and precious as ever. I held my breath through the whole speech.

In the darkness I sat in vulnerable silence, only crying on the inside. Then, the Mayor, who was sitting next to Ray's chair reached over and pulled me into a hug, at which point the tears came. After living this story for so long, I didn't know that it would be so hard to share, face-to-face, with that many people. It's hard even writing about it now -- being so exposed, I guess. Showing people, through the photographs, exactly what we lost, and what we have been given.

But, the last thought that comes to my mind is, "I couldn't be prouder of her."

Rich in Friends

We have never had to suffer the isolation that often accompanies an injury like Abbie's. This, perhaps, is the most profound evidence of God's grace in our lives. We are utterly surrounded by people who care, who listen, who quietly come alongside and shoulder our burden. Abbie, as I often tell her, is the richest little girl I know. She is wealthy in friends... the best kind of friends: tender-hearted, considerate, joyful, patient, kind. Words cannot express the depth of gratitude in my heart for the precious little ones who care about Abbie, and let her know it.

Cassidy is the daughter of one of Ray's co-workers. She has followed Abbie via the blog for a long time, and kept bugging her mom about meeting Abbie. She was already one of Ray's little sweeties, as he took special delight in giving her quarters -- until one day she opened her wallet to reveal several dollar bills! We have loved watching her grow since she arrived home from China at one year old. She has blossomed into quite a personality, so I was excited to have her visit Abbie one evening.



Abbie still had her casts on, so Cassidy was a little shy, and overwhelmed with the sights at first. But, once she warmed up, she was off to the races...or perhaps, the theater -- this girl is made for drama! She read many books out loud to Abbie, and even did the voices of those silly monkey jumping on the bed just the way Abbie used to. It is possible to smile through tears!



Abbie hadn't yet had anyone sign her casts, so I asked if Cassidy wanted to do this. Of course! She signed her name on BOTH casts, so that "one wouldn't be lonely." She then also put Abbie's name on there for more company. Abbie delighted in having another little girl in the house, especially one as animated and friendly as Cassidy.




Last week the Cheshire family stopped by to make up for Abbie not being able to go to church on Christmas Eve. Not many families could stage a re-enactment of the Christmas story, complete with all the characters including a live "Baby Jesus."


Little Iliana was the youngest of the three wise "men", and played her part beautifully, with Christa the Angel, and Isaac, Wise Man #2 adding their joyful smiles to the mix.


The kids acted out the whole Christmas story for Abbie, then Katrina and Christa danced for her. The visit ended with Christmas gifts of crowns and an angel. How completely blessed we were. It is a major troop movement to take eight children anywhere, let alone having everyone's costumes and props. Unbelievable. As they drove away into the night I wondered aloud, "What have we done to ever merit such kindness and love?"

We may have lost much, but for us, the Lord has replaced "normal" with "extraordinary". Thank you, Cassidy, Christian, Katrina, Caleb, Christa, Ian, Isaac, Iliana, Ilisha, and each of you who show amazing love to a little girl for whom you are the whole world.

First things first, Abbie got her casts off on January 8th! The nurse asked if we wanted to keep these casts, and I quickly said, "No! I have zero emotional attachment to them...once they are gone, this is all going to be a bad dream that never happened!"

I learned the lesson that Hollywood is still studying. Some movie sequels ought never be made, thus there is no "Cast Off Movie 2" on YouTube. This one would have had much less sound effects, however. After last time, I was prepared to the hilt. We had Traumeel cream at the ready, legwarmers to slip on as soon as the casts were removed (thanks, Auntie Debbie), and many forewarned hands on deck to help with the distressed cries of Abbie....which never came.

Not even one whimper. She grinned slightly as the saw's vibrations tickled her, but that was it. It would've been anticlimactic, but then Abbie put on a show. As soon as the casts were gone, she began lifting her little legs off the table. This was three weeks after breaking both femurs, mind you. Then, she began doing circles with her feet, something she has never done! She was just so happy to be free again, I'm not sure if I would've been appropriately shocked if she'd jumped off the table and said, "Let's go!"

All the way home she lay in the backseat, (which she thinks is the greatest) and continued her lower extremity aerobics. I'm glad there were lots of red lights along the way so that I didn't rear-end someone while peeking at her. She does have leg splints to wear through the 18th, but only when she is in her stroller or being positioned in a way that could put stress on the fracture sites. The Xrays that day looked great, and she has "made a lot of good, new bone." Hurrah!

We will go back on the 28th for another set of Xrays to ensure the thickness of her bone is sufficient to begin weightbearing. I am confident we will get the green light to get going again.

In addition to the joy of freedom, these have been exciting days because Abbie is just doing so darn well. I actually have a little tracker now on her whiteboard, like the "days since a safety incident" at construction sites, to advertise how long she's gone without needing any oxygen at all. This was Day 16. I hate to say that's the longest we've gone since I can remember. The open hole in her throat predisposes her to lots of irritating junk. I am praying we can get it closed up this Spring.

She is also sleeping through the night, a MAJOR victory for us all! She then awakes refreshed and happy, with smiles to beat the sunrise. Her vision, cognition, and motor skills seem to be coalescing into new gains. The other day she was laying on her side, watching her reading video. I had just moved her up to "Level 3", which brought proud grins from her. At this level the viewer is often presented with three or four words or shapes on the screen and asked to point to the correct one. If the weight of her arm was supported at the elbow, she reached and pointed to the correct ones! If she can do this consistently, and build up strength, this would be a big step toward a better communication system, like a touch-screen computer!

Although, at the rate she's using her voice, I don't know if she'll need one. That girl is getting downright bossy at times, calling me from the other room, irritatedly informing us that she has a monster wedgie, or telling us to be quiet for a while! I leaned over her and said, "You are so close, Abbie! All we need to do is get that tongue moving, and you will be making words again." Big grin.

But, then I wondered if I was being fair by saying that to her, making it sound like a simple proposition, when actually it's a pretty complex operation. My mommy-guilt passed quickly when I realized all the steps of language production she DOES have, with understanding being the primary, and least-expected one. She knows how to use her breath to produce sound (even bypassing that hole in her throat), she uses her language at appropriate times, and boy, does she know WHAT she wants to say. So, we really have lots of the big pieces...would you just pray for her tongue to get with the program?

She has been absolutely blessed by visits from friends lately, but I want to dedicate a separate post to that. So, I will just close by saying that I am amazed, even now, even after all this time, that things can feel like they are happening so quickly and suddenly. I often say I find comfort in "having read the end of the book" so I know that all of this will end well. However, I was cheating myself of the blessing of actually memorizing the final red words in my Bible.. They seem especially appropriate for this new year, with joy coming down in buckets, as we continue to trust in the One who never changes.

"Yes. I am coming quickly" - Revelation 22:20

What a Christmas

Life, and the challenges thrown at us, seem to keep ratcheting up lately. I sit here trying to pull my thoughts together, and find that I am somewhere between dizzy and numb.

Christmas Eve was wonderful, with Genevieve offering to spend the night since her children went ahead of her to the Philippines two weeks ago. What a blessing to be able to do all the things a busy elf needs to do without worrying about neglecting Abbie!

Christmas stars still twinkled (along with the outside lights we forgot to turn off) as we tried to put Abbie in her jogging stroller to take her into the living room, the Christmas tree and her waiting brothers. She was having none of it. We quickly changed plans and just carried her to the couch.

I warned the boys, now all old enough to have just asked for money from Santa, that they would be spending most of the morning as Abbie's helpers, since she outnumbered them in presents ten to one. She loved digging into her stocking to find gloves with little faces on the fingers, a scarf and matching hat and a new toothbrush. And, she eagerly opened her presents. All the while however, her heart rate was hovering at 170...very, very high.

Before we could get to all of her yuletide bounty, the princess fell asleep. Her heart rate didn't drop below 150, though. I was beginning to get troubled, recalling the screaming I'd elicited the day before just putting in a feeding tube -- something she normally doesn't even notice, let alone complain about.

By 5pm, having tried everything to get her comfortable and bring her heart rate down, we were on the phone with the on-call pediatrician, nodding as he advised us to go to the ER. I was thinking UTI, or something in her belly...actually, I was hoping that was the problem since that is on the "easy" end of the spectrum.

Nope. The urine culture came back clean. She didn't complain as the doc examined her belly. Her fever wasn't breaking through the meds we'd given her for pain. She didn't even really look "sick". Just that darn heart rate, which could just be a sign of pain. But, since we'd ruled out her midsection, folks started looking south, towards the Great Pink Hinterlands of Abbie's legs.

"There's a possibility, given the weakness of her bones and the weight of the casts that she may have fractured her femurs higher up."

Oh, please....God, no, not that.

Ray ran into Dr. D., one of our orthopedic surgeons, in the hallway. Having been at the hospital until midnight on Christmas Eve, he was just finishing up another long day. Note to self: Thank the Lord I am not a surgeon, and be grateful to those who are!

Calm, Rational, I-could-be-a-doctor-by-now Mom asked, "If there are more fractures, what are the options?"

"Back into a spica (body) cast" was the answer I anticipated and got.

Dr. D. exited, right along with Rational Mom. Broken, Scared, Overwhelmed Mom sat back down and resumed pleading. "Please God, I know somehow we will make it through whatever comes, but please....not this again!"

The Xray tech made her second visit to Abbie to get a better picture of the femurs. And then we waited...

Thankfully, they had a TV on the wall of the room we were in. Amazingly, Abbie was watching it. "Home Alone" was on, and she was getting quite a kick out of "Crazy Kevin" and his antics. Her concentration, vision, and smiles gave my flagging spirit some reinforcement as the waiting continued.

The doc walked in with the only Christmas present I wanted: no new fractures! At this point it was kind of a puzzle, with the clearest answer being that her chest, which looked sort of junky on Xray, was brewing an infection. The doctor mused about admitting her and starting IV antibiotics. I gently countered with, "Isn't there something else we can do?"

Something else won out: a shot of Rocephin in each thigh, and Gtube antibiotics and we were on our way. Home. What a blessing!

My parents arrived on 12/26 to find us rather strung out, but hanging in there. We were excited to spend time together, but didn't really plan on doing it all by candlelight. Around 7:30 our whole island lost power. The pioneer lifestyle is fun for boys, but not for fragile little girls...or actually, not for their mommies.

Radio reports said it would be 12 hours at least, so we settled in for the night. I do not make a good pulse-oximeter, but with Abbie having something going on in her chest, it wasn't as if I could just tuck her in and kiss her goodnight. I absolutely HATE the beep-beep-beep of an alarming pulse-ox, but I sure missed it last night. I had to trust my ears and eyes all night. By morning, when the power came back on, I was officially ready for the looney bin. Sleep deprivation creates insanity as quickly as raising teenagers does!

But, I'm rested now and Abbie is much, much better. This evening my mom and I were putting her to bed and talking about her cousin, Cooper. His 6th birthday is coming up in January. I told Abbie, "That Cooper, he keeps trying to catch you...he's going to be six...but then, WHAM, you have another birthday and get really far ahead of him again."

She grinned the biggest grin my mom has ever gotten to see. What a gift! As I type she is smiling in her dreams...sometimes she even laughs. I pray that one day soon she can find the same joy and freedom in her waking hours.

I want to balance what feels like a "whah, whah, whah" update with an amazing thing that happened this week. Ray called and told me to open my email because he'd forwarded something to me. His voice sounded strange, so I got nervous.

Once I read the forwarded email, my voice got funny, too. Tears will do that do you. A group of folks who work for him wrote : We decided that we wanted to do something for you for Christmas in a little different way…….we have purchased a gift card for Tiffany at the Kahala Spa. It waits for her at the Boutique. It will get her their special Kala Ko”iko”I LomiLomi

Can you believe that???

As scary as it gets, God's assurance is greater. As hard as it gets, God's power is stronger. As sad as it gets, God's promises are sweeter. And, as lonely as it can feel, God's love is unfailing.

The surprising thing remains...for here and now, He does all of this through people. I know I will die with a look of astonishment still on my face, and my first word to my Creator will be "Wow!"

"Get Me Outta Here"

Um....apparently someone neglected to tell Abbie that you can't hop out of bed with two huge casts on.

Last night she began sitting herself up and wriggling, as if to free herself. Today Genevieve noticed her raising and moving her right leg. Funny, WE can't move that leg without vigorous, hearty protests from our girl...but on her own, it's no problem. I think she was enjoying moving about, standing up, being on hands and knees, wheeling around in a stroller as much as we were (probably more). Her mind continues to tell her to GET UP -- I love that, but it is heartbreaking to watch her hit the wall, the big pink fiberglass wall, that keeps her restrained right now.

I was going to write about how much better her pain level is, but I was delayed in posting by a huge meltdown. I can't tell you what it does to me to have her crying inconsolably. I can't giver her the meds fast enough. I talked to the surgeon today, who felt that we should be able to taper down the Tylenol with codeine. We have somewhat, but when those cries begin, I don't care about anything but getting her comfortable. The surgeon feels that we will take the casts off on Jan. 13. Not exactly around the corner, but having a date makes it seem closer!

As she was whimpering, I put my hands over her knees and prayed for God to send the power of all the prayers being lifted for Abbie. The next moment she began crying loudly, and her knees got hot. It was strange...no other part of her cast was hot, just the part over her fractures. I don't understand it, but I do believe that in that moment each of you were standing there with us. If nothing else, it helped this mom not feel so alone and overwhelmed.

I walked into the bathroom tonight, looked into the mirror and realized that at this hour eighteen years ago I was in labor with my first child. I was young, and had not a clue about what I was getting myself into. It's amazing Chase survived me. In that mirror I saw unknowing youth that had been replaced with a few wisps of gray and some hard-earned wisdom. I still can't believe that tomorrow I will be the parent of an "adult" (please, note the quotations!). Does anything change us more than our children? Perhaps only our Father.

I pray that in the silent of the night, anticipation fills your heart -- Emmanuel is coming. God is ever with us.

Settling In

After a very difficult weekend it seems that things may be calming down for Miss Abbie. We gave her Tylenol with codeine very four hours through Sunday evening, just to try to stay ahead of the pain. Sometimes it worked, sometimes (like during diaper changes) it didn't.

She was able to go all night without an additional dose of pain meds last night, and this morning was resting comfortably while satting 100. What a blessing to not have respiratory issues to deal with right now!

She looked much, much better yesterday evening and was able to have an eye-blink conversation with me. She answered all my questions appropriately, and held her eyes closed for a good long time when I reminded her that Christmas was near and Santa would be coming to her house.

Looking back I realize I spent a good part of the weekend in shock. It was chased away by an intense migraine on Sunday morning. Ray quickly sent me to bed so I would be ready to attend the twins' championship football game that afternoon.

I made it to the game, but felt like an alien standing in that park...not quite a part of the same world as everyone else there. By the time we were celebrating the championship win, I was woozy and the park was spinning. Kyle drove me home, and back to bed I went.

But, finding later that evening that Abbie was doing much better made me much better as well. We'll just take this day by day until we get to "Cast Off Day 2"...I'd really never planned on making a sequel to that movie!!

Thank you so much for your prayers..we feel them. Abbie's eyes light up and she smiles when I remind her that many people are praying for her. Thank you for not letting her be alone in this!

The Unthinkable

Note: I am posting two updates in one day. Please do not read this one first. Scroll below to "Joyful Days". God gave us those to get us ready and I want you to know the joy we had this week before you read about how the week concluded.

OK, I know most of you are probably cheating and reading this one first, but I'll continue anyway...

As I wrote in the previous update (whom all of you compliant ones have already read..way to go!), Abbie had a wonderful week, and by the therapy session on Friday her body was in just amazing condition. Her muscles were so relaxed that we were able to move them any way we wanted with no complaint or resistance from her. It was almost strange, but in a wonderful way.

We got her on her knees, with her elbows resting on a foam square. That was a piece of cake for her, so we rotated the foam square to make it higher. Still not a problem. Our girl was blowing us away with her progress! Then..during a bit of a position change, she came almost up into tall kneeling (which is kind of like standing straight up on your knees). I was behind her, holding her feet, and just saw her bottom kind of shift to the right. When that happened, her knees bent way beyond the 90 degrees she's been working at. In that moment the screaming began.

It's not been unusual for Abbie to be uncomfortable after doing something new. So we took her home, crying all the way. After about an hour she calmed down and fell asleep, so it seemed that perhaps it was normal post-rehab soreness.

However, when she awoke from her nap screaming, we changed our minds. Unable to comfort her, we quickly loaded her for the trip to the ER. Ray called ahead and explained the situation, so when we arrived we jogged right in to the trauma room.

Abbie was in the bed where her life was saved, and the physician on duty was the one who resuscitated her. I had not been in that room that day, and felt privileged to be the one stroking her head now.

She was quickly given 2mg of morphine, which only moderately dealt with her pain. Things were not looking good. I already knew the truth, but was desperately hoping that I was somehow wrong.

A hideously painful round of Xrays confirmed my awful suspicions. Both of Abbie's femurs had been broken during therapy. I thought I might dissolve into a puddle on the floor. I recall turning toward the monitors and just whispering, "God, I know you are good. I cannot see it right know, but I know it."

The fractures had nothing to do with the surgery, but were rather down lower, just above the knees. In fact, the surgery sites looked great! Abbie's problem is that because she hasn't been bearing weight in so long her bones have become very, very weak. Her beautifully relaxed muscles had been deceptive at therapy, giving us signals that her body was ready to do more than it really was.

So, Abbie went into surgery around 9pm to receive 2 pins through each leg, and then new casts from each thigh to foot. This time they are fluorescent pink, as I've seen enough purple fiberglass for a lifetime.

The surgery went smoothly. She didn't have to be intubated, and I asked them not to catheterize her, so they didn't. She was on room air through the night, with pain meds to keep her comfortable. We had great nurses, so I was able to get a few hours of sleep after we were finally settled around 2:30am.

We were on the way home by 12:30 today. I was amazed that within just twenty hours we'd arrived at the ER, been diagnosed, gotten surgery and casts and been discharged. Thank you, Kapiolani!

Fortunately for us, and unfortunately for his wife and dinner guests, Dr. B. was the ortho on call last night (he did her big surgery). So, his very calm manner and my trust in him help me at least remain vertical. The bad news after the surgery is that he pushed the pins in with his hands...calling her bones "butter...cold butter, but butter." Yikes.

We will be exploring ways, both nutritional and more aggressive means to increase her bone density.

Right now we are almost too numb to cry. No Christmas shoes. No church on Christmas Eve. Back to square one. But, also I think through these years God has given us the gift of perspective.

Someone commented last night about what a setback this it. Well, yes. But, at the time Abbie was in a room on the floor where the oncology kids are cared for. A place where "setback" means the bone marrow transplant didn't take, the chemo isn't working, or the new tumor is inoperable. So, we've recieved a two-month bump in the road, not a permanent set back.

And, I know there will be good to come from this. As I looked at her surgery sites, and saw comparatively good bone there (on the Abbie scale), I wondered whether this new aggravation at the other end of her femurs may prompt them to create more bone there. "Perhaps" was the answer from Dr. D., the ortho on call today who also did Abbie's surgery. One of Abbie's PTs said, "Bone is always the strongest where it's been broken." Sort of like hearts, it seems to me.

Having JUST gotten to the point of having knees bend enough to use footplates and sit in a car seat like any other kid, I was worried about losing that. Dr. D. made my day this morning by saying, "This injury may even give her MORE knee flexion (bending).

So, today when speaking to the PT who was in the session on Friday, I recited all these "Good Will Come" affirmations. She said, "You are always so positive!" I said, "Look, it's just that we're in a place where it's 'be positive or die.'" So, we are choosing to move forward with hope.

Are we sad? Beyond words. Are we fatigued? Body, mind, and spirit. Is it unbearable to watch your daughter suffer? You know that answer. Are we relying on your prayers? Every second and for every breath.

On that note, here's a prayer list:

1. Pain abatement. She is in excruciating pain. Even sliding diapers under her bottom is torture for her.

2. Quick healing. The sooner we can get back to work, the happier we will all be.

3. Bone density. This is the long term solution. I asked the surgeon how we could get her bones stronger. "Weight bearing" was the reply. But, how to safely bear weight with fragile bones. That's the conundrum. We don't want this to become a vicious cycle...we try to bear weight, she fractures fragile bones, which we then have to cast, making them more fragile.

4. Stamina, for all of us.

Thank you for surrounding us with love and prayers. Times like this remind me that all of this is so much bigger then me, and I really cannot handle it on my own.

God is good!

Joyful Days

So many good things have happened this week, and I actually got pictures of most of them!

On Monday we got Abbie on her hands and knees at therapy. It took five of us: one at each leg, one at each arm, and one helping her with her head. That should make the reason why I don't have a picture very obvious! She did better than we had hoped, and was willing to allow her knees to be pulled up to about 100 degrees, while bearing some weight on them. We had a giant magenta lycra sling under her belly and hips to help support her weight as well.

On Tuesday I put her up on her potty chair for the first time in many months. After about thirty seconds there was a lot of...uh...production! I was so surprised, but Abbie was acting like "Helloooo, I'm ready for more than you think I am!" I was so happy I actually did take a picture of the potty and send it to Daddy, but I don't think I need to publish that one!

Wednesday took us to therapy again, where this time we did some standing. Abbie was pretty sleepy, as it seems like her meds are beginning to affect her more. But, she did well.


We started out at this angle



Then we moved up, and allowed her to bear more weight. Since she hasn't been standing in a long time her bones are not ready bear all of her weight which is why she is not standing sraight up.


Look at these ankles!! The orthotics are designed to allow her ankle to flex forward while she stands, so they are bending even beyond 90 degrees. Unbelievable!


Gotta show off Auntie Genevieve's work. I think Abbie's had four different nail colors in the past 10 days!

Thursday was a great day! Abbie was able to get an hour of standing done, in three separate sessions. But, the highlight of the day was a tea party with the Cheshire girls (and baby boy).

Abbie was tired when they arrived, but still really enjoyed exchanging presents! She recieved 2 beautiful dresses.




One matched Christa's dress




The second was a red one that both the girls have worn. They gave matching reports: "It's itchy!!!" So, perhaps Abbie will wear an undershirt, but it's too pretty not to wear!

The real squeals came (from me) when we opened the box containing a pair of Christmas shoes!!!



We then let Abbie go rest while we enjoyed Katrina's homemade scones and some fruit. Christa sat down at the piano, and seeing her profile, with her hair covering her face made me think of little Abbie, who would lead me by the wrist to the couch, say "You sit there," and then climb up to the piano bench and plunk out a masterpiece for me.




As Christa and Katrina sang and danced for us, I felt that I was seeing what angels may look like. Radiant girls, dressed in white, raising pure, innocent voices to God. Amazing...at the time I didn't know how much I would need that memory the next day.

They then went in to sing to to Abbie, who loved it.



That evening I got Abbie into an umbrella type stroller I'd borrowed, because I tried to change her wheelchair footplates myself. Brilliant move. All I succeeded in doing was making it pretty much unusable. But, placing her in that stroller was yet another exciting step because her knees bent beautifully and her feet sat properly on the footplates. For the first time since she was injured!

I wheeled her all over the house showing her off to her brothers. She sat in front of the Christmas tree for a long time, admiring the lights and soaking in time with Kyle.

As Friday morning began, I found myself rushing out of the house to make it to Matt's Christmas performance. During the drive I thought, "Wow..two months ago tomorrow we were in surgery. I can't believe how far she's come. This is so FUN..watching her actually be able to accomplish things and experience a cooperative body."

It seemed at the time that we were on the expressway, speeding toward all our goals.

In the blink of an eye, that all changed. But as our world crumbled yet again, I was buoyed by all the precious and exciting moments of this week.

Shoes!

I had a blast on Thursday afternoon shoe-shopping for Miss Abbie. The weather was so terrible that I didn't want to take Abbie out in it, so I sketched the length of her foot on a piece of paper and headed to town.

Turned out all the shoes I'd been drooling over at Sports Authority were for older girls, sizes 3 and up. Rats. So, I left there and went to the New Balance store, knowing I would need wide shoes. The clerk helped me size the drawing, and we figured she would need a 13 or 13 1/2 depending on the orthotics. She had one style in each. The 13 was pink with velcro straps, while the 13 1/2 was a purple lace-up style. I'd heard velcro works better with orthotics, but when I got home I was concerned to see that both pairs looked tremendously too big for her feet.

Matt came in to give his expert opinion, and told me that the purple pair was an absolute must, no question. Abbie obviously agreed. I explained to both of my fashion mavens that we needed to choose the pair that FIT, not the pair we thought was the prettiest.

The next day I took both pairs to therapy, along with a pair of size 12s I had at home, since the other two looked so much too big. Abbie spent close to an hour on a bolster swing -- you can think of it like riding a horse. Towards the end of the session the therapist, Jayna, traded places with me so I could swing my girl. It quickly became obvious that, just like always, the higher we went the more Abbie liked it.

Our talented orthotist, Kai Newton, arrived with a pair of orthotics that looked MUCH different than I thought they would. I'd expected the ones that go almost to the knee and are quite noticeable. Abbie's have a flexible sock-like cushion, custom-molded to her foot, that goes on first. Then we put the clear, somewhat flexible orthotic over it. It only comes up a few inches above her ankle. Pink straps completed the perfection.

We tried the pink shoes on first, but they didn't fit so well. So, we unlaced the purple ones and slipped them on. Abbie cried. I told her, "This is like all the things we've done for the first time after your cast -- at first it may hurt a little, or be scary, but in no time this won't bother you at all."

The shoes fit perfectly - so, Matt and Abbie got their wish! Here are Abbie's first pair of tennis shoes in four years:






I cried. Jayna was overwhelmed. She asked me "Do you still have that Nemo?" She was referring to a stuffed Nemo that we placed under Abbie's feet in the PICU. Jayna sat her up in a chair before her eyes were even open, and when Abbie followed our instructions to go find the Nemo below her feet with her heels, Jayna become one of our first advocates in our "Abbie Is In There" campaign. Her asking about Nemo was validating for both of us just how far we have come, and how much hope and progress remain to be realized.

Here's a picture of Kai. He was surprised I wanted a photo of him, but he does such an amazing job, and his efforts truly improve Abbie's quality of life. If you're on Oahu and need orthotics, call him at Advanced Prosthetics!




Daddy came home from a week in Nashville to find his girl up in her wheelchair with big ol' purple shoes that were just MADE for walking. And, now when we put them on we get smiles instead of tears...more progress!



The angle of this picture makes her feet look even bigger. I don't watch much TV, but for some reason I've seen the "King of Queens" episode about the "big hand portrait" more than once. This picture made me think of that and laugh. We'll be changing out her foot plates soon -- we'd put ones on to accommodate knees that didn't bend. Now, they are just getting in the way of knees that do bend and feet that want to be flat -- hurrah!

It continues to rain, fiercely at times -- my apologies to those here on vacation, what a bummer -- but there is so much sunshine in our house that the grey outside has no chance of pressing in. These are good days!

Unexpected Answers

This has the potential to be a long update, so I am going to break it up into three parts. The first, most important segment is about Abbie's first week of rehab, while the second and third parts are especially pertinent to other brain injury families - so I hope you'll read them when you have time.

Part I: Tears

We began post-op PT last Wednesday mostly just doing measurements and some sitting. Nothing too challenging, but we still got a few complaints when we didn't support her knees well enough.

The next morning I decided to lay her on her tummy across a ball, to allow her knees to bend. We had some serious tears, and they weren't all coming from Abbie. It is so very, very hard to watch her suffer, even for a good cause. It made the whole day heartbreaking for me, and took me to some very painful places mentally.

On Friday I had to miss PT to go to the dentist. Ray went to check on Abbie and Genevieve and called to report that he found both of them in tears. Ugh. By the time I returned to the hospital to pick them up, all was well, and I thought perhaps the dentist appointment had been a gift, to spare my heart of more than it could've handled that day.

Saturday was a bit better, and slowly I could see that things were getting easier each day. I told Abbie that this was just a process we were going to have to work through, so that she could do all the things she was excited about before the surgery: riding a bike, riding a horse, walking down the hall. I reminded her that it is safe now to move her body, as a lot of her resistance didn't seem to be coming from pain but from fear of pain.

Monday's PT was a HUGE improvement. She sat on a bench, with her knees beautifully bent and her feet flat on the floor. It has been four years since she was able to do that with ease. To pass the time on the bench Abbie dressed up a Mr. and Mrs. Potato Head by selecting all the various parts. No surprise that they turned out very colorfully: purple lips, blue eyelashes, pink ears, green nose...she loved it!

Yesterday I was able to lay her on that same ball with absolutely NO complaining..in fact she enjoyed it. Maria came to work with her and was very encouraged, which rubbed off on me.

At today's PT session she was again sitting on a bench, but one that was topped with a rocking wedge. Her feet were placed on a scooter board. So, she would rock side to side, with knees at 90 degrees and feet flat. Then, we would stop and ask her to push the scooter board out. Once she figured out what we wanted her to do, she was very good at it. I was thrilled to see her USE her new legs. And, not one peep of discomfort. I am amazed at how quickly things are getting easier for Abbie. Friday's appointment will included the fitting of her new foot braces, so I am thinking about going directly to Sports Authority afterward, because I was eyeing all the pink Nike shoes with anticipation on Monday...can't wait!!

Part II: An Answer from the Stars

While Abbie was in the hospital a man I worked for years ago was in town, and part of his itinerary included speaking at a breakfast Ray would be attending. Back when I knew him he was a lieutenant colonel; now he is a two-star general serving as the Deputy Surgeon General of the Army. "Take a shot!" I thought. So, I did.

I drafted a letter to Major General Rubenstein explaining my interest in brain injuries, which are now the "signature injury" of our current wars, and imploring him to direct military research funds to defining and defeating the Nogo protein and other neurite outgrowth inhibitors. I included a number of abstracts from completed research, signed my name, prayed, and gave the packet to Ray to hand deliver.

Given the overwhelming demands of his job, I would have been very content with an email saying "Got it, will look into it." I received MUCH more. I was humbled and overwhelmed that he took so much time to gather information, and I want to share some of the content so that other brain injury families can receive the same encouragement I did:

I have consulted with subject matter experts at the US Army Medical
Research and Materiel Command and the Telemedicine and Advanced
Technology Research Center (TATRC). There are several related projects
underway in this line of research.

The Christopher Reeve Foundation (CRF) is working on one project
with the "North American Clinical Trials Network (NACTN)." In the
research application submitted to the Department of Defense in September
2006, the CRF proposed that NACTN would evaluate a new treatment for
spinal cord injury: the neutralization of the axonal regeneration
inhibiting molecule, Nogo, by means of an intrathecal infusion of a Nogo
antibody. This proposal is on hold until Novartis receives FDA approval
to conduct a trial of its anti-Nogo antibody in the United States. In
the meantime, however, Novartis has expanded its Phase I clinical trial
from the European sites to several Canadian clinical sites, including
the University of Toronto.


The following related projects from the Northern California
Institute for Research and Education do not explicitly deal with
Myelin-Associated Glycoprotein (MAG) research, but they all touch
components of related pathways:

a. Novel Astrocyte Signaling Therapy to Promote Neuronal Regrowth and
Suppress Glial Scarring During Traumatic Brain Injury.
b. Promoting Neurogenesis by Suppressing Microglial Activation.
c. Role of TREM-2 in the Microglial Response to Brain Injury.
d. Promoting Recovery from Traumatic Brain Injury by Suppressing
Inflammation.

There are a multitude of pathways involved and while scientists try
to find the golden target, it becomes increasingly apparent that
combination therapies driven towards multiple parts of the central
nervous system inflammatory and apoptotic pathways will likely be
required. There has been some promising work using an antibody in a rat
animal model by University of Pennsylvania and GlaxoSmithKline (enclosed
abstract), but the challenge is trying to get a molecule so complex
through the blood brain barrier and into the central nervous system.
Dr. Mike Kubek at the Indiana University of Pennsylvania has developed a
nanotechnology for moving proteins into the central nervous system via
the nasal epithelium that might hold promise.

TATRC also has a full proposal from Dr. Song Li at UC-Berkeley that
uses the phosphodiesterase-4 inhibitor rolipram, which has been shown to
overcome inhibitors of regeneration (including myelin breakdown
products) and promote axonal regrowth; and chondroitinase ABC, which
degrades chondroitin sulfate proteoglycans (CSPGs). CSPGs were also
included in the list of articles you submitted with your letter.

Additionally, TATRC has a Congressional project with the Citizens
United for Research in Epilepsy (CURE) Foundation, which includes
multiple investigator-initiated studies for the prevention of
post-traumatic epilepsy, including the prevention of astrogliosis
(inflammation of brain cells).

Finally, there were several discussions and research posters
related to MAG research at the Society for Neuroscience conference. Dr.
Ken Curley and Dr. Brenda Bart-Knauer, TATRC, spoke with Dr. Kubek at
different times during this conference. Dr. Kubek has worked with CURE
in the past on post-traumatic epilepsy and has submitted a grant
proposal for the nanoparticle delivery of peptide drugs to the brain.


He the ended the email with something that brought a huge smile to my face:

I hope this provides some insight on the work that is being done in
this line of research and gives you some comfort in your day-to-day
challenges. I'm reminded about the daily exhortation of my very first
battalion commander. He would remind us to "never give in, never give
up, never, never, never." Your efforts are strikingly similar. Hooah!

I smiled because hanging on Abbie's whiteboard is a little, square, black magnet with simple white letters on it -- words that sum up our journey: "Never, Never, Never Give Up!"

Part III: Out of Left Field

I got a call yesterday that answered some of the deepest cries of my heart -- cries for guidance and wisdom. Answers to questions that have been lingering, almost taunting us. Why can't we get Abbie's iron levels up to normal? Why are the basal ganglia (involved in motor control) always so affected by brain injury? What should I be feeding her?

You wouldn't think there'd be a common answer to all those questions, but there is, and it revolves around a trace, non-magnetic metal called manganese.

Here's what I learned from that call:

While manganese is important in trace amounts for metabolic functions, toxic levels produce symptoms that can mimic autism and Parkinson's disease. This has been documented in literature as far back as 1819.

Excess manganese also inhibits the absorption of iron. You can think of these two elements like a teeter-totter. If not in balance, you can't get the iron in to the body.

This would fit Abbie's clinical picture, so I was very interested. But, then came a clincher.

Once excess manganese enters the brain the place it likes to settle is the basal ganglia, specifically the globus paladii. Of course, I hit Google hard last night, and found this remarkable quote:

“whole blood manganese levels were associated with hyperintense globus palladii on T-1 weighted MRI. Following liver transplantation, neurologic function improved, blood manganese levels normalized, and the MRI signal abnormality completely resolved” Liver disease in Children: Suchy, Sokol, Balistieri, p217

It caught my attention because on Abbie's recent MRI her globus palladii were indeed "hyperintense". Now, the condition of her brain is primarily the result of an injury, but given that the manganese issue fits her clinical profile, I think it could be a complicating factor in her recovery.

Here are a couple links for interesting articles about manganese, and particularly about how soy formula is an especially potent delivery vehicle for toxic amounts of it.


http://www.westonaprice.org/soy/manganese.html


http://articles.mercola.com/sites/articles/archive/2001/06/13/soy-formula-part-one.aspx

I was relieved to know that I'd been avoiding soy in Abbie's diet for a long time. But then, I caught the next punch square in the jaw.

I do make all of Abbie's food, but when I am running short on time, sometimes I use baby food in the mix. Turns out that baby food can have ENORMOUS amounts of manganese added to it. When one physician who is helping children affected by manganese toxicity tried to find out how much manganese is in baby food she ran into an interesting situation.

She looked on the jars to find that where an amount should be listed for manganese, there was instead a tilde (asterisk-looking thing). She called the FDA to find out what this meant, and was told, "That means the manufacturer knows how much is in there, but has opted not to report that to us." What???

So, I have to stay away from baby food now as well. To put this into perspective, the maximum amount of manganese a child should ingest per day is 0.5mg. 100g of baby food with turkey meat has 30 mg of manganese, while baby food creamed peaches has over 15mg. And, without proper labelling, it is impossible to tell what how much manganese is in each different baby food. I looked at the canned nutrition we had given Abbie (Compleat Pediatric), to find that it had .5mg of manganese in each can. She was getting several a day. One other place where there is risk of excess manganese is in supplements: joint formulas including glucosamine and chondroitin often have large amounts of manganese added, so you may want to check the levels if you are using supplements like these.

I just received the "anti-manganese" diet that a physician treating children with manganese-related neurological conditions has developed. I have been CRAVING dietary advice ever since I took Abbie off of her raw milk diet. I am so very thankful to have some guidance. We will start it tomorrow. The physician has seen dramatic improvements in each and every child using the diet in 1-3 months. I am hoping it will help Abbie as well. The changes in the treated children have been dramatic, but I am not getting my hopes up too high, focusing instead on just trying to solve the iron issue.

If you are interested in looking at the diet, I will be happy to email it to you. Just send me a note at varasix@aol.com.

So, it has been an amazing week of progress around here. Abbie is exceeding our expectations daily, and looking beautiful doing it. I feel that my Christmas came early, with gifts of information and insight beyond what I could have ever asked for. And, this past week I've run into so many people who've told me they are still keeping up with Abbie. You must know that especially on the hard days, when tears fall, that is the rope keeping me hanging onto the side of the mountain. Thank you!

May God bless you!

"She Didn't Have a Surgery"

Those were the words of the orthopedic surgeon today at our follow-up appointment, after he looked at the Xrays we had just taken. "She is totally healed from the surgery...treat her now as if she didn't even have a surgery. Time to get moving!"

Okey-Dokey!!!

I am thrilled at how well her bones healed, and am so very excited to get to the fun stuff now. Jayna, one of the PTs who will be helping us "get moving" was at the appointment with us today. We filled the waiting time by excitedly building a list of things Abbie is going to be able to work on that she either hasn't been able to do in a long time, or has not been able to do since she was injured:

* Getting on her hands and knees
* Working on sit-to-stand transitions
* Walking down the hall in the Walkable
* Working on flexion beyond ninety degrees for her ankles and knees.

And, the very best...asking Jayna what Dr. B. meant when he said he'd ordered "DAFOs" for Abbie's feet instead of "AFOs" (the type of foot splints we've always used.) She explained that DAFOs are molded very closely to the feet and legs so that they fit inside SHOES!!! (They also let Abbie move her foot up and down, but that wasn't what thrilled me, sorry to admit.)

My sweet girl has been stuck with clunky fiberglass boots, albeit with cute patterns on them, for all these years. Now we can go shoe shopping again!!! To truly appreciate this you must know that Abbie picked out her first pair of shoes at 9 months old, when she grabbed a pair of high top pink sandals with flowers on them and wouldn't let go. She was also the biggest shoe stealer, always clomping around the house in everyone else's shoes, finding special joy in high heels. I know I should be focused on functional improvements and physical gains, but I have to say that finding out about the shoes brought me the most joy today --- pretty shoes with a Christmas dress is making me giggle with anticipation. God is so good!

Jayna was the first PT who worked with Abbie -- we met her in the ICU. She was among the first to support our belief that Abbie was "in there" and called Speech Therapy to get Abbie working with switches even before her eyes were open. I told her this is the first "do-over" we've gotten. She saw, along with us, Abbie's legs and feet transform the the well-toned, flexible ones belonging to an active toddler, to the restricted, misshapen, unusable ones belonging to a brave, but injured, warrior. Jayna spent 3 years in Japan and recently returned, so it seems a full-circle moment to me that she is with us as we begin this journey from "Start" again, with beautiful, flexible, healthy legs. And this time, things are only going to get better.

What a day!!