Thursday, December 28, 2006
We went to church on Christmas Eve morning, and as we sang those familiar songs I realized that I am now living in a much different place, a different "day". Long ago, around the time of the first Easter after Abbie's accident I wrote about feeling "stuck in my Saturday", the day between the suffering and the resurrection. Still overwhelmed by grief, each day challenged me to take one more step towards Sunday, even though it seemed so far away.
Last weekend my heart rejoiced with the understanding that I am now living in my own Christmas Eve. The hope is reaching its fullness, and I am deeply assured that even more than we have dreamed is about to come to fruition. Like Mary, there are things I cannot explain right now, and some that I don't even understand yet, but I wait in the stillness of the night with a quiet smile, knowing...
My parents were with us for a week, and it was encouraging to see them note changes in Abbie even during the short period they were here. Abbie would think the most important thing to tell you is that she lost her second front tooth the day after Christmas. I joked with her that she is keeping us busy with all the nighttime visitors, Santa Claus, the Tooth Fairy...that elicited a big grin from her. She clutched her two shiny quarters all day today, even during her bath. Her vision continues to improve, and the pupils that have been hyperdilated since her injury now appear normal much of the time. That size difference has a big effect not only on how well she sees but on how good she looks, making her look more "there". Her upper lip retracted quite a bit in the months after her injury, but it is now coming back down into a normal position, which will eventually make eating and talking much easier for her.
One of Abbie's biggest concerns right now is being left out or left behind. There are times when we take the boys to do things and leave her at home with a nurse, sometimes for health reasons and sometimes for logistical reasons. This is starting to be increasingly aggravating to her, and we are trying to include her in as many outings as possible. I am happy to see this desire become more pronounced and strongly communicated. She now does exceptionally well when we take her out, unless it's to a movie theater. We went to lunch on Chase's birthday (12/23) and after a brief catnap she awoke to show off her dimple as she grinned at each of us. It was the first time I saw her independently engage to the point of smiling without someone being in her face or physically entertaining her. Another step...
At this time of year, like most of you probably, I find myself reflecting on my greatest treasures, which are all people. I am overwhelmed that God has blessed me with such a wonderful man to share my life with, and that he has given us five amazing, unique children. Every day is an adventure! I am also a proud auntie to the smartest boy in Seattle, Cooper and his budding sidekick, Oscar. I knew my sister was worth keeping around, even though I tried to give her away when she was born. I am profoundly thankful for all those who've joined "Abbie's Team" - the doctors, nurses, therapists, and other professionals. They inspire me with their wholehearted dedication and love. I am forever indebted to the other families of brain injury survivors who I've met, corresponded with, or followed via the internet. You have been my guides, comrades, encouragers, strong shoulders, and knowing hearts. And, I will be forever humbled by all of you who have joined us in this journey (even you lurkers out there who've never posted...I still feel your prayers!) You have been many things to us - our lifeboat, a rescue line, the voice that says, "Yes, you can" when we think otherwise -- you have dreamed the dream with us, and we will never be able to thank you enough.
John 1:5 says, "And the Light shines on in the darkness, for the darkness has never overpowered it." (AMP) This Christmas a new Light is dawning in our family, and it is illuminating a whole new day. Joy comes in the morning!
Monday, December 18, 2006
Abbie was unusually fussy, and nothing was helping. She was trying to move and had a look of intense frustration on her face. I thought perhaps she was confused about why her body was not responding to her wishes, so I once again explained to her what happened -- she got an owie in her head, but she was safe now and with Mommy. I told her that she is getting better every day and just needs to keep talking to her body. I used the most soothing voice I could muster, and the explanation stopped the fussing. But, that was just one data point, and it wasn't the first time I'd had to tell Abbie the story of her Re-Birthday.
Over the weekend, as I mentioned, we saw big differences in her vision, but we also saw big changes in her muscle tone, and not for the better. She was extremely tight, uncomfortably so, for much of the weekend. This tone continued today in her therapy session, and prevented us from getting her into as good of a crawling position as we normally do.
After therapy we brought her home, and the fussing commenced. Not "I'm a little upset" type stuff, but a pretty insistent, "I'm ticked off" effort. Nothing we tried helped, and she wouldn't use her switch to tell us if something hurt. I stepped out of the room to see Ray and the boys off, and returned to hear Debbie say Abbie wanted to go somewhere, but she couldn't tell where. Sure enough, I heard "Go, go, go" from Abbie, but couldn't get her to tell me with her switch where she wanted to go. Out of desperation I finally said, "Abbie, is this just a good, old-fashioned temper tantrum?" She hit her switch so fast and hard that her hand flew off the bed.
Debbie and I laughed so hard and thought, "Just like Abbie! At least she's honest!" But, the more I thought about it, the more the pieces began to fit together to form a picture of a new stage of recovery for Abbie. She is just plain mad about not being able to move, about being left behind so often, about being bored much of the time. She can't express this emotion overtly except through her fussing right now, but this stage is part of the normal brain injury recovery process. Using her eyes more, being mad, and the changes in muscle tone make me think she is climbing to new places in her journey, and that is thrilling!
Why would high muscle tone make me think that? Because of something called "Hering's Law" which says that before you get better you get worse as you regress back through the injury to reach healing. We always expected that as Abbie recovered we would hit points with her tone like this, because there were stages early on where her tone was very high and required medication. All in all, we are seeing outward signs of changes within Abbie's brain, and we are rejoicing.
Just wanted to share Abbie's Temper Tantrum Story before it got lost in the craziness of the week to come. Blessings!
She has been doing really well lately. This past weekend Ray and I both noted how much more quickly she was using her eyes. I laid her in bed with him on Saturday, and as soon as he started talking to her she turned her head and eyes right to him -- so quickly that it shocked both of us. She also was really looking at books, brothers and other fun things. Her therapists both commented on her eyes this morning before I'd even had a chance to tell them about the weekend.
This biggest news, however, is that after 18 months of working on it, The Hope Project is slated to start the first week in February!! We are fortunate to be doing this in partnership with the University of Hawaii School of Speech and Language. They have space we can use, they are going to provide speech therapists for the kids, and in essence are making our first steps possible. I was thrilled to tell Abbie that she is going to be starting "school" after the holidays, right down the street from her brothers -- her flashing eyes and dancing eyebrows told me my excitement isn't solitary. Initially, it will be 2-3 mornings a week for 3 hours. The intensive, personalized interaction and stimulation will be terrific for her, and I am anxious to see how she will respond to it.
Now that we have our first foot on the ground, with our eyes fixed on a tremendous vision, I want to invite you to join us in this journey. Beginnings are hard for a non-profit organization, because most funding sources, both public and private, want to see some sort of track record before granting support. So, I am praying that you, Abbie's Angels, will help us make this part of Abbie's mission a reality. Financial contributions of any size would be so appreciated, and can be sent to:
Hope Project Hawaii
c/o PO Box 235201
Honolulu, HI 96823
Each Christmas lately for the adults in our family we've just been supporting worthy causes in their name. Last year we "bought" llamas for families in South America. This year, they are going to be receiving a piece of Hope. As Christmas nears, I pray you would also consider this in your family. I do need to let you know, however, that we do not currently have official 501 (c)(3) status, so if you want to ensure your donation will be tax deductible, please wait until after January 1st.
If you live on O'ahu and are interested in getting involved in a practical way, we could really use volunteers with OT or PT qualifications, or other therapeutic backgrounds.
Initially, funds donated will be used to purchase OT and PT support, basic equipment for OT, PT, Sensory, art, music, and supplies like books. Eventually, we are hoping to hire a uniquely trained special educator who will provide Conductive Education for the first time in Hawaii on an ongoing basis. CE is Hungarian in origin, and is very successful at getting motor-challenged kids out of wheelchairs and up walking. There is much more to our vision, but as Abbie's pediatrician reminded me last week , "A journey of a thousand miles begins with one step."
We look forward to my parents arriving tomorrow, to experience sun, warmth, and power, leaving the currently Stone Age Northwest behind. We are praying for those of you enduring the aftermath of the storm.
As the "shopping days" dwindle, I hope that the light of the Christmas grows in your heart. In reflecting on the first Christmas I realize that there was also a lot of hub-bub preceding that event. After giving birth to five children, I know that labor is not a "silent night", and I wasn't even surrounded by livestock. But, after the birth pains, I think stillness descended and wonder abounded. I hope that each of us can experience that part of Christmas too!
Wednesday, December 06, 2006
Tonight's ceremony was scheduled at the church next door to the hospital, Central Union, and was concieved to allow the families of children who died at Kapiolani to gather and honor the memories of their children. I started crying on the phone as Ray described the event, knowing that it would be painful to be there, but also knowing that I must go.
Central Union church is special to me because its steeple always remains lit. During my all-night PICU vigils, the church's physical structure reminded me of Christ's presence with me, while the steeple light reassured me of His love. But, although I sometimes escaped to the grounds of the church to pray, I'd never actually been inside. Until tonight...
It is by far the most beautiful church I've seen in Hawaii, with soaring ceilings and pillars. As Ray and I entered we were introduced to the pastor, and I'd just begun to thank him for always keeping the steeple light on when I caught my first glance of the front of the church. I stopped speaking mid-sentence and tears filled my eyes. There, above the huge white cross were gold letters that had to be five feet tall. They simpy said "Love Never Faileth." The same words, in fancier syntax, that I whisper to Abbie...Love Always Wins!
I couldn't believe that inside the church which had given me so much comfort were the three words I've clung to for so long. I felt like I had been ushered in to the very heart of God and had found what I knew was there all along. My hope isn't reckless and my dreams aren't delusional, because Love is a Person, and He never fails. So many times I have prayed for a "billboard answer" from God..do we keep Abbie on life-support or let her go? Do we pursue this therapy or that one? How do we best love and support the boys through all this? I've never gotten a neon sign, but tonight I received the only billboard I will ever need, because it answers the deepest questions of my heart.
Those three words brought me great comfort during the ceremony, which was heartbreaking. I almost felt like an intruder because, although we know some of the pain, we have never had to bury a child. Each family went forward, read their child's (or children's) name, a bell was rung, and then they hung an ornament. It seemed to go on and on, until three trees were covered with special tokens of love mixed with grief. All I could think was, "Thank you God, that Abbie is not just a name on a paper and a ring of a bell." No matter how hard the days get, or how my heart despairs at times, I will never forget the weeping parents in the pews tonight...their tears renewed a right perspective for me. Each day with Abbie is a precious gift.
Quite a ways through the ceremony we heard a name we recognized, one which we hadn't heard in over two years. Justicia was a very special little girl, born with a face that looked very different from other little girls because her bones were fused together. She was in the PICU the same time as Abbie, and initially we gasped when we saw her. But, as the days passed a funny thing happened...she transformed into the most beautiful girl. Actually it was our hearts that were transformed as we looked at her through God's eyes. She died while Abbie was still in Bed Space 14, and being consumed with Abbie's care at the time, I didn't get to say good-bye to her mother. I was so blessed to catch up with her after the ceremony, and initially was too emotional to even speak, so Ray had to explain who we were and why we were so glad to see her. Justicia had a profound impact on us as we were just beginning life with a special needs daughter, and tonight was a very sweet tying up of loose ends.
As for our Abbie-girl...she had a check-up yesterday and now weighs 41 pounds and is 42 inches long..right at about the 50th percentile for each. I am pleased that she is doing well proportionally, and is healthy overall. Today she lost her left front tooth, so now she really looks like a pirate when she grins. Actually, what it makes her look like is a much older girl. This afternoon I was sad about that, but after the tree-trimming ceremony I am just thankful that she is getting to lose teeth!
We had a great OT session yesterday. We focused on hand/arm movements, choice-making and vision...sounds boring for a five-year old until I tell you that we accomplished all that by playing dress-up with a magnetic doll. Abbie got to choose what to put on her, and always ended up with coordinated outfits, right down to the shoes. It is easier for her to look to the right, so after a few choices, Patty put the shoes which would obviously be more appealing to Abbie (pink slippers with polka dots) on her left side. She chose them! We then asked her if they were purple, and she immediately nodded her head "no". Patty was also making Abbie help put the pieces on the doll. I asked her if she was doing the whole movement for Abbie and she said that before she helps, she waits to feel some sort of initiation. This made me very happy because while Abbie is not yet able to do the whole movement herself, she definately understands what she is being asked to do and what parts of her body she needs to use to accomplish the task. I feel like as long as we have the building blocks there is nothing she will not eventually be able to do herself. There is not one area where we have absolutely nothing to work with. I even confirmed with Patty what she was seeing as far as vision, by asking, "If I told a doctor that her therapists feel she definately has some vision at least some of the time would you agree with that?" and she said she would, especially after observing Abbie make such intentional fashion choices.
So, all in all a good week. The Bible says that hope deferred makes the heart sick, and I can tell you I know the truth of that from experience now. I have been struggling a bit, just having another holiday season with Abbie in a wheelchair, unable to partake of so many things that make this time of year special. Tonight, I realized however, that I've been focusing on the wrong part of that thought, the "unable" clause loomed large and obscured the cause for rejoicing, "another holiday" with Abbie! What the families I met tonight wouldn't give to be able to say that.
Saturday, December 02, 2006
We had a nice quiet Thanksgiving at home. Debbie came and spent the day with us, which allowed me to spend most of the day in bed. Abbie enjoyed tastes of mashed potatoes, mashed sweet potatoes, and cranberry sauce.
Abbie just could not be satisfied today. She would demand to be put on the potty, and then cry to get off. She would want to lay on her side, and then complain about that. Debbie endured several hours of trying to make her happy before I finally realized that perhaps she was feeling the same way I was feeling...achy and miserable. We gave her some Motrin to help with the symptoms, and she calmed down.
In the afternoon Ray took the boys to the UH football team practice. My HOPE Project partner, Ellie, is married to the defensive line coach, so she coordinated this special treat. As the team was coming out to stretch and warm up Coach Jeff took the boys onto the practice field where they got to meet Colt Brennan, Leonard Peters, Ikaika Alama-Francis, Davone Bess and others. In other words, it was Warrior Fan Heaven. The players were so kind, and really took time to talk with the boys, confirming that they are the type of team I thought they were.
A dreaded garage sale started our day...it wasn't the sale we dreaded so much, it was the garage. But, we conquered the cave of accumulated junk, made a few bucks and enjoyed a unique study of human behavior. Thankfully we had a rare day of Saturday nursing to help with Abbie during our sale, and afterwards when I collapsed into bed to rest up for our important evening date. She still wasn't feeling great, but was much happier than she was on Friday. Her muscle tone has been a little higher, but I've not been working with her as much to protect her from my germs and because I simply can't at this point.
Purdue was in town to play the Warriors, and even with most of my voice gone I still wanted to cheer for the guys, especially after how kind they were to the boys the day before. Like a lot of people, I find many metaphors for life on the football field. This night was no exception.
We dominated the first half and went into the lockerroom up 17-0. As the third quarter started we looked forward to more of the same, leading to another lopsided result, customary for this season. It didn't take long to begin wondering where the team that played the first half went. Everything went wrong, the spark seemed gone, and soon enough we were trailing. I thought of our life "before" and how when everything is going along smoothly, it's easy to project that same ease into the future...you assume things will continue as they are forever.
When the wheels fall off there are two choices as the wagon skids on the ground...put 'em back on and get going, or sit in the motionless wagon as you feel the momentum fade and bemoan your fate. In games, it's all about momentum, and when you lose it you have to determine whether you have the strength to grab it back or whether your fate is going to be dictated to you. There are many days I feel the sparks as our wagon scrapes the ground...the systems don't work, I get sick, life throws curveballs...and there are some days I wonder whether we can yet again drag ourselves out of the wagon, put the wheels back on and get going again.
I watched UH face the same choice, and they responded by gathering themselves together and coming back for one of the most exciting wins ever. Games like that are sickening to watch, but are fun when they are over. It may sound overly sentimental, but from their example I gather strength.
As the game drew to a close, Ellie came and grabbed the boys so she could take them down on the the field. At some point down there Kyle remembered his cell phone has a camera, so he got a picture of himself with his hero, Ikaika Alama-Francis, and got one of Leonard Peters flanked by the twins. I was again touched by the hearts of the players, who had just finished a demanding, emotional game, yet stayed on the field for a long time signing and taking pictures. After we finally got the boys back we got the breathless "first-person" reports about the players. They smiled broadly as they asked me to guess what Davone Bess's eyeblack said...I couldn't imagine...finally they said in unison..."One eye said 'Jesus' and one eye said 'Christ'!" As a mom I rejoice when the people my children admire turn out to be admirable people!
Walking along, talking about how special it was to meet the players I said, "Boys, this is your sister blessing your lives." Chase and Kyle understood immediately, but the twins questioned me. I said, "If Abbie hadn't gotten hurt we never would've met Ellie, so we wouldn't know Coach Jeff, and you never would've gotten a chance to be with "the boys" yesterday and today. This is an Abbie-blessing." They agreed, but then RJ said, "Actually, Mom. Abbie started blessing our lives the day she was born." Amen!
I was so incredibly sick today that we even had to miss the memorial service for Everett McDaniel, which broke my heart. Ray and the big boys took good care of Abbie all day.
Ray did pull up one article on the football game that caught my attention. In it Colt Brennan said something to the effect that the game did not go to the team that most believed it could win, the game went to the team that loved each other the most. Then I knew...the reason I love that team so much is that they believe the same thing that I have been whispering in Abbie's ear all these many months..."Love Always Wins!"
Monday and Tuesday, 11/27-28
I am still so sick, and Debbie is out sick as well, which makes for interesting days. I am doing the best I can, and Abbie and I are enjoying lots of quiet time together.
I was in bed resting in the evening watching Pastor Wayne Cordiero give a message that really clicked with me. It was about appropriating God's grace in your life. I didn't take written notes, but the gist of it was three steps:
1. Humble yourself...do it often. I seem to do this naturally since I normally can't walk down a sidewalk without tripping. Just when I am feeling put together and on top of things...splat, I am down on the ground. But more than that, I think being humble is just keeping an accurate perspetive of ourselves in relation to God and other people, and seeking always to have a servant heart.
2. Repent Often. This is the point that really changed the way I think about things. When I hear the word "repent" I think of big, heavy prayers, spiritual self-flagellation, and huge commitments to changes in behavior. Pastor Wayne used the Greek roots of "repent" to illustrate that all God is calling us to do is change our mind. Simple as that. When you find yourself thinking wrong, like "That guy is an idiot!", you just catch yourself and readjust your thinking. For me, I need to repent of despair and disillusionment as often as anything. I have to "change my mind" from believing what I see and hear to believing what God has said and promised. Repentance has now become an almost continual exercise for me, and I am finding that as I take responsibility for "changing my mind" to become more like Christ's, peace abounds.
3. Learn to strengthen yourself in the Lord. There won't always be someone to encourage you. You won't always get a word from someone when you need it. You have to build an independent relationship you can rely on. I have found this to be so true. Even though we have received more support than anyone else I've ever talked to, there are still moments in the middle of the night when I can feel alone unless I turn to the Lord in that aloneness and learn to plead my case in my own words, learn to appropriate His promises in my own faith, and learn to rest in His provision alone.
Finally able to get Abbie back to therapy today. We'd planned to use the tilt table the previous Friday, but I was too sick to go. We also missed PT/OT on Monday for the same reason. It's been a while since we had Abbie up on the table, so we wanted to spend some time stretching her feet and ankles. The results of the stretching were not impressive, and I was apprehensive about what we were going to see once we had her bearing weight. Silly Mommy, I should know by now that Abbie doesn't like prep work, she just like the real thing. When we got her up her heel came down nicely, the alignment of her feet was good, and she was much more relaxed than we expected. She also stood for a longer time than we had expected. All in all, a good session!
Our last speech group session for the semester. Since the group is run by UH Master's students, we will be on a break until the end of January. Abbie wasn't as interested in participating today, but the students were still so effusive about how far she has come and and well she is doing. Since the group will not be meeting for a couple months I am probably going to take Abbie to private speech therapy sessions in the interim.
Friday evening brought the Christmas party at the Children's hospital. I visited with most of Abbie's physicians, and they were each so positive and encouraging. Her ENT said, "It will not surprise me at all to see her walking around one day." How blessed we are to be surrounded with exceptional professionals!
I'm almost all better, Abbie is doing well, and we are looking forward to the Oregon State game tonight. Having been raised by a "Beaver Believer" this is a big night for me. It's been fun to tease back and forth with my parents this week, and at this point I am praying the team will give me bragging rights for the whole coming year!
We have transitioned Abbie from five feeds a day to four, which has given us more flexibility during the day. The next project is to fit the fluid from the overnight drip into the daily schedule so that we can ditch the feeding pump at night.
One more note: Dr. Tennant is coming back to Honolulu, Feb 15-17. There will be a free informational lecture on the night of 2/15, while 2/16-17 will be the Biomodulator training seminar. You know what I think....GO! www.senergymedicalgroup.com for more information.
Blessings and GO WARRIORS!
Thursday, November 23, 2006
I came home to give Abbie a workout with Debbie. As she was catching me up on what had happened while I was at school, Debbie said, "At one point she was having a very good dream and had a huge smile on her face. Something looked different though, and it took me a minute to figure it out. The grin was prominent on the left side of her face!" The left side is still not as animated as her right since it was affected by her late-onset brain swell. When I heard this I looked down at Abbie, who was laying on her back on the massage table, and said, "Were you dreaming about running around and causing trouble??" Instantly I got a huge grin and dimple. She was dreaming about that!! We asked her several times and each time she got that pirate smile.
At three o'clock, just as Debbie was leaving and Genevieve was arriving, Carol also arrived to give Abbie a session of Healing Touch. Carol began by praying, as always, but this time as I joined her in prayer I felt strongly that I should stay during this session instead of using the time to catch up on housework. I stood quietly by, praying, for about 10 minutes and then I had to step out of the room to help the boys. I asked Genevieve to stay in the room in case Carol should need her. As I later walked back to Abbie's room I passed the bathroom and heard Genevieve in there, sniffling. When she returned to her seat I mouthed, "Are you OK??", and she quickly nodded "yes" but I noticed she had tissue in her hand and was occasionally dabbing her eyes.
I sat in the recliner across the room and watched Abbie while I prayed. At times she responded so powerfully to Carol's gentle touch or movement of her hands. While this continued it was as if I was seeing her rise above her body. Now..don't get me wrong, I wasn't having literal visions, and this is hard to explain. But, while I could obviously still see her laying still on the table, I could also "see" her sitting up, rising, healthy and whole. I didn't say anything about this to anyone, however.
After Carol left I asked Genevieve what was the matter. She teared up again and said that while Carol was working with Abbie it was like she could see her standing up. It was so clear that she really expected that at any moment Abbie would just leap off the table and say, "Mommy!" Given what I'd just experienced, this was especially strange, in a wonderful way. All I could say was, "We are getting close now! It's right around the corner!!" This journey has stretched me in so many ways, and one of them is learning to trust that there are things to be seen with our hearts.
This evening we took the boys to a baseball game and saw many old friends. We were particularly excited to see Henry and Kathy Chun, whom we met shortly after moving here when their son played on sports teams with Kyle. Henry and I spent a lot of time at practice fields chasing toddlers; his Kobe is the same age as Abbie and they were quite a pair. I'd lived here only a couple months when I met Henry, so my ear wasn't yet attuned to the local speech patterns, and Henry is about as local as you can get. I recall having to really work hard back then to decipher some things he said, things that I now pick up without thinking about.
Anyway, tonight Henry pulled me aside and said, "When we came to see you in the hospital there was something I wanted to say to you, but I couldn't do it then. You were being so hard on yourself, and I didn't know if it would just make it worse. But, you know, kids are so fast, and life is so crazy...you know all this wasn't your fault, right...you know that? I just wanted the chance to say that to you before I died..'Thank You Jesus!'...now I have. Just like Earl, I can cross another thing off my list!" I didn't know what to say, standing there in the middle of a ridiculously noisy baseball stadium, because that felt like a huge hug from God. I think I will always feel responsible, because I was the one at home with her, but God is again telling me that although that may be true, Abbie's injury and the aftermath has been used for His purposes and there doesn't need to be any assignment of fault. I was also blessed to see how heavily this has weighed on Henry's heart. What special people God has surrounded us with!
We wish you all a terrific Thanksgiving! We will be having a peaceful holiday at home, and 24 hours may not be enough time to count all of our blessings...after all, we need to thank the Father for each of you!
Tuesday, November 21, 2006
This sounds a little petty, but I had a haircut appointment that I'd already rescheduled three times, so last night I sent an emergency email to my friend Sandra, and she agreed to bring her four kids to play with Abbie while I had my locks shorn.
Having Abbie to myself in the morning gave us the chance to take a walk to the beach. It's only about 6 blocks away, and it's ridiculous how rarely we go down there. It was a beautiful, soul-reviving day, and the ocean always gives perspective, doesn't it?
I was about a block from home when I saw San's van pull up to our house. I jogged the one block (which was enough jogging for me, sad to say), and met them at the gate. Into my SuperMom phone booth, and a few minutes later I was out the door to the salon. I left with Abbie being fed on her bed, joined by Keiko who was using stuffed animals to put on a play for Abbie. I returned to find Abbie and Keiko laying side-by-side on the floor, with Keiko holding a book up and reading to Abbie. They had french-braided her hair, had her do ballet and hula with them (they agree that she likes hula even more than ballet..a local girl!), and Abbie had obviously soaked it all in. What a perfect morning for her! I wish I could bottle hours like that and give her a dose every day. Abbie is so blessed to have friends with such tender, caring hearts.
Praise God, we got a key step accomplished in the effort to obtain the stander. It was submitted 3 months ago for an approval process that was supposed to take 30 days at the max. We were expecting it to get denied, and needed it to so that we could take the next step and access a special fund for thing like standers. After the request seemingly disappeared into a black hole, and being unable to get anyone to talk to me or explain where it was, Ray got involved last week. Because of his job he has access to places that most people don't (including me). Anyway, he was told that the approval person requested more medical justification on October 11th (43 days after we first submitted the request). The vendor nor our physician ever received anything like this. Ray asked for a copy of the letter yesterday, at which time it was also sent to the vendor (apparently for the first time). Today the vendor sent a scathing letter stating that there were reams of medical justification already on file, but sent what had been requested. Shortly after this letter was faxed to the approval authority our request was denied because it is "not a covered service." WOW! It had taken them three months to figure this out?? So, we have been delayed, lied to, and run around. Without Ray's access we would still be in the dark. On the upside, we can now move forward to use waiver (special fund) monies, and hopefully the stander will be approved soon. This is the third time we've had an experience like this, and we've only made three requests for durable medical equipment. So, when the responsible parties labeled this recent snafu an "outlier", we just smiled and thought that either we are really wierd and know a lot of other really wierd families who have experienced "outlier" after "outlier", or perhaps the system is truly broken. We are hopeful, now that we have the documentation of this latest round of madness, that Ray can have a constructive conversation with the appropriate people to effect change in this important but ill-functioning system. The bottom line...ARGH!!!
At the end of the day, though, I am standing here typing with a big smile because God is so good to us, all the time. There is peace in my home (the kids are in bed), we are all healthy, and we live freely, things that I try never to take for granted.
Monday, November 20, 2006
I was fortunate today to attend a conference called “Hilopa’a”, which in English means “to braid firmly”. The conference gathered players from all segments that impact on the lives of medically fragile or developmentally disabled individuals. In the opening remarks I was blessed and encouraged to hear about so many things that started in Hawaii, including Early Intervention and the Medical Home movement (keeping kids with their families rather than in institutions.) It renewed my hope that even from these small islands we can change things for the better.
The opening session was nearing its close when I answered my cell phone because Ray had called a number of times. I thought it would be normal logistical stuff…who’s picking up which boys etc…instead I found myself doubled over in my chair, fumbling around the tabletop for napkins to cover my sobbing face after he told me that Everett McDaniel had just come into one of Ray’s ERs and died.
Those of you who knew Everett need no explanation for my response. For those not blessed to meet him on this side of Heaven…Everett was a mountain of a man, both physically and in heart. A leader in our church, he came with the elders after midnight one evening to lay hands on Abbie in the PICU, and seeing his huge, gentle hands laid on her tiny hurting body brought me such peace. But most of all, Everett gave the best hugs ever! Between my sobs that’s all I could say to Ray, “No one give hugs like Everett.” A welcoming smile and a warm hug awaited everyone entering our church on Sunday morning. Everett taught all of us how meaningful something as simple as a hug can be.
I continued crying unabashedly down the hall to the first breakout session. A woman who had been sitting next to me when I got the call, caught up with me to give comfort. She related that she had been reading Abbie’s site since the beginning and had been so blessed. As we talked my eternal vision was renewed, and I realized that at that very moment Everett was in Heaven..wow!! I was crying selfish tears, because I was going to miss his hugs, but he was rejoicing.
Almost losing a child makes Heaven so real, and the battle to bring her back fills me with anticipation of when the fight is over, every tear is wiped away, and we enter into perfect joy. Everett’s homegoing has also made Heaven more real because now I can clearly envision who is going to be greeting me at the gates, with a warm hug, big smile and probably wearing a white-on-white Reyn Spooner shirt.
The first breakout session was informative, but I was thrilled by the second. I knew it was for me just by the title. “When Strangling Isn’t an Option: How to Work Well in Difficult Teams”. There were about 50 professionals in the room, 4 panelists, and me. I listened for quite a while about how teams can work together well, how trust is built, and how decisions can be reached. This discussion focused on the IEP process for special needs kids in schools. Finally I had to rain on the Peace and Love Parade and inject a little reality. I related our IEP experience, of not being privy to much of the information discussed away from the table, and even decisions made without our knowledge, let alone input. I remarked that because of the broken trust we had to walk away from the table and continue to home educate Abbie to this day.
The Department of Education panelist spoke and within one minute had said the word “constraints” five times. Parents needed to understand the constraints of the system, the schools are under constraints etc. This was familiar and expected, so I just let it pass. Then, an angel was revealed. He was another panelist, representing the Board of Education. He said something to the effect of “I don’t buy the ‘constraints’ thing. You need to be focusing on the needs of the kids first, and trying to figure out how to meet them.” I started crying. To hear someone in a position of influence advocate for our kids was overwhelming and unexpected. Later in the session he also remarked that there needs to be an “attitude change” at the principal and school level. He didn’t concretely express what this change referred to but it’s well understood that complex specials needs kids are seen as drains on resources who are not going to improve, and therefore are unworthy of investment. Principals have been recorded saying this to parents in IEP meetings recently, so this is more than just a perception. I left there with more hope than I’ve had in a long time, and if you ever get a chance to vote for this angel in a Board of Education election, I beg you to do so. Check the box for Garrett Toguchi, and thank God there are people like him fighting for our kids.
In the final session, God used the exercise to remind me of just how blessed I am. We had to fill out a “Natural Supports” worksheet with four concentric circles. The inner circle was the “3am circle” -- people you can call for help at three in the morning. The next circle was “good friends”, the next was “acquaintances” and finally “paid supports” I had to use just initials to fit people in my “3am” box, and still didn’t get everyone in. As we went around and shared our results, I found out that I was almost the only one in the room with anyone except immediate family in the inner circle. I didn’t even work on circles 2 and 3 because again, there were just too many names. This was inconceivable to everyone around me, and made me realize anew how God is carrying us through this – with your hands!
The other thing it made me think is to ask each of you, wherever you are, if you would reach out to a family with a special needs child. Understand that they may not return phone calls often, if ever. This isn’t lack of desire, or flakiness, it’s just sometimes impossible. Simple kindnesses are profound to a family that may feel isolated. Stop and talk to them when you see them out and about, encourage your kids to interact with theirs, don’t be afraid to ask questions, find a way to include them. These things have made all the difference to us, and to Abbie. You may one day find yourself in someone’s “3am circle” and will be blessed because of it.
Abbie’s tone had been a little higher lately, so I really didn’t know what to expect at PT. We decided to try to get her on hands and knees with the sling again. We raised her a little, but her knees weren’t wanting to bend much. I tried to keep my spirits up by focusing on how well she was doing with her hands, arms and head. Even though it didn’t look like we could get into a true crawling position we decided to raise the sling anway. Once it was at a height to allow her knees to bend to 90 degrees they just melted into the mat, simple as that. We ended up having a terrific session, and at the end I was relating highlights of the Hilopa’a conference to Lynette and Patty. One takeaway point was to ensure we celebrate victories, no matter how small. Lynette looked at me and said, “Well, today is definitely a session worth celebrating.” I grinned at that, because it’s sometimes hard for me to judge what is a good session and what is a great one. I am so proud of Abbie!
Another little vomiting episode impacted Abbie’s sats in the morning and made her participation in the afternoon Speech group questionable. I laid down to take an early afternoon nap and awoke to find Abbie in her wheelchair, all set to go. When I asked Debbie if we should go to speech, Abbie hit her switch, blinked her eyes, raised her legs, and in all ways available, shouted, “YES!” So, with her sat rates good, we took off.
These sessions are a real respite for me, because while Abbie is enjoying her friends and doing good speech work, I get a break and some time to spend with other parents. We chattered away the hour-and-a-half in the snap of a finger, and then went down the hall to collect our group of singer/artist/reader kids. The therapists were raving about how responsive and engaged Abbie was – they have really seen changes in her these past two months. They were doing a painting project and Abbie didn’t much care about it until she noticed what a mess it was making on the therapists' hands, then she couldn’t get enough. A great afternoon!
Another little peek into Abbie’s personality that confirms she is the same rascally girl. Ray noticed that every time I said the word “nebulizer” she would have a little cough. Not a productive one, and not one that took much effort, just a little one. Just as I was preparing to actually give her a nebulizer I said the word again, and she gave her little cough again. Ray said, “Abbie, even if you cough you still have to have a nebulizer.” Out came her little dimple. Busted!!! She’d been trying to get out of the neb treatment by faking coughs, because we always tell her they help her have big coughs and clear her chest. Ray and I both recalled the little two-year-old Abbie who would wander into the kitchen to see a brother taking medicine and immediately cover her mouth and begin fake-coughing in an attempt to get some of the pretty purple stuff too.
We left Abbie to be spoiled by Genevieve and went to the UH football game. It is really fun to watch a group of boys who work hard and care about each other excel. (Please note that they are now ranked #25!) This season is going to be over much too soon for us!
Abbie finally made it to Sunday School again! The past two weeks she’s been all dressed and then we either had a vomiting episode or a blow-out diaper that prevented us from going. This is the highlight of her week and she was noticeably excited to as we loaded the van.
Again, I thank God for her switch and for the months and months of work her therapist Lisa put into finding a way for Abbie to communicate. It is like a magnet for the other kids and ensures Abbie’s gets many opportunities to interact.
I did get a little teary when Kathleen told me that at one point Abbie got very frustrated. I asked her what she meant by that and she told me that Abbie had been pulling her head and chest forward, wanting to get up, and then a big tear rolled down her face. This broke my heart while it made my soul rejoice. How I hate to see her suffer, and how glad I am that she is driven to get up.
Sunday afternoon was very special for our church, as we had the dedication for our new sanctuary followed by a luau. I’d initially planned to take Abbie, but Genevieve wanted to come stay with her, and it turned out to be the best thing. She was falling asleep as we left, and probably enjoyed the restful time at home rather than the busy crowd and loud music.
As soon as I saw the program I tried to leave my seat to get tissue because I knew the waterfalls were bound to flow. This dedication was a poignant marker in Abbie’s journey because the capital campaign that paid for the construction was scheduled to kick off the Sunday after Abbie’s accident. During that initial week in the PICU, Pastor McDaniel and other leaders were questioning the timing of that since our church family was emotionally devastated by what had happened and was consumed with supporting us through it. The leaders gathered for a late night meeting at the hospital chapel to pray about it, and afterwards came up to pray for Abbie. That was how Everett ended up laying hands on Abbie so late at night. Anyway, Ray and I supported their decision to proceed because we had learned very powerfully that week how critical the bonds of Christian brotherhood (and sisterhood) can be, and want to see every family have the same support we experienced.
Now, here we were in our beautiful sanctuary that Pastor has called us to think of more as a bridge than anything else. Everett is already Home. Others in that late night group have moved away. On one hand it drove home that life has moved on since that terrible week. I opened the program to find the song “Be Thou My Vision” listed, and tears filled my eyes. It’s the song we sang together that first night, in the conference room next to where Abbie lay on a ventilator with “no hope”. To sing that song again, on a night of such sweet and true celebration, made it for me partially a celebration of how far we have come from the night we sang it through fearful tears.
I don’t think I’ve ever been part of such sweet worship and such pure celebration. It let me imagine what it will be like when Abbie is healed, and then led me to consider what it will be like when that celebration is continual and everlasting.
We honored the first pastor of our church, who served for 31 years. I realized that he and his wife labored all those years, and are now seeing another part of their vision fulfilled. I got to experience for the first time how truly precious the victory is that has been long awaited. The whole night felt like a foreshadowing to me, and I continue to wait with anticipation for what the Lord is going to do!
Another great PT/OT session in the sling. We made it to hands and knees very quickly, but the thrilling part today was her head control. As we were getting her in the sling I assumed Lynette was holding up her chest and arms from the other side. Nope, it was all Abbie. She was pushing through straightened arms to support her chest and head. She was looking straight forward, and looked so strong that for some reason she reminded me of a lion.
After we’d been in the sling for a while we got her out and sat her on a bolster to see if she could keep her knees so nicely bent. Easy-schmeasy. We do plan to get her back up on the tilt table on Friday, though, because her ankles are getting a little tight as we still await her stander.
The stander…this is a whole ‘nother issue. One that had me sobbing in absolute rage on Sunday evening. We are still in the process of working this out, hopefully for the betterment of all kids in Hawaii, so I don’t want to post details. Please just pray for us as we proceed. Pray that people in authority would listen and realize this is not just an isolated incident but rather that the system is broken.
There…all up to date! Just a couple of housekeeping things. Pictures…I need to post some so badly, I know. I lost the charger for the digital camera during our trip to Disneyland. I’ll work on this issue so that you can see, literally, how great Abbie looks these days.
Secondly, I don’t know why but I feel the need to write this. Many times I dread writing about things like how much better her drooling is, or how we are suctioning less. I feel like “oh, shouldn’t we be past this by now!?!” But, the real problem is that I don’t trust my words to convey the Abbie I see, so that when I post about things like drooling I fear that will paint a picture of her that is incomplete. I don’t know how to capture her spirit, her spark in writing. I’m not sure how to accurately convey her intelligence, her humor, or her beauty. When I look at her I don’t see “mentally retarded” “developmentally disabled” or “handicapped”. I see “strong”, “funny”, “loving” and “determined”. I pray that when I write about things that fit in the former category, they don’t eclipse the qualities in the second, because that is who she truly is.
Tuesday, November 14, 2006
We've been getting Abbie up to stand every day, and although some days we can only do it for short periods before her legs start to discolor, I do think it is helping her. I've also been feeding her peanut butter and jelly orally with breakfast -- two tastes she loves, especially together. At the same time I have been putting conductive patches under her chin and connecting them to the Biomodulator to stimulate her swallowing and improve her facial tone. I know this is having an impact because although Debbie wasn't aware I have been doing this, she asked yesterday what was up because Abbie wasn't drooling at all and not needing to be suctioned either. This was encouraging for me to hear and spurs me to keep up our early morning stim sessions.
Yesterday I was visited by some friends I hadn't seen since Abbie was in the PICU, Jim and Remle Winand. In fact, Remle brought 3-week old Levi to visit us, and chatted until the nurses pointed out that there were some very sick kids in the unit, including some with RSV...that was quickly the end of our visit! Jim and Remle brought now-two-year old Levi and big sister Mia over so that we could discuss things I've learned on this journey that may help Jim beat the colorectal cancer he was recently diagnosed with. He is a very healthy, 38-year-old firefighter (nothing bad should ever happen to those guys!), and finally went in to be checked because the pain level was getting intolerable. I think Jim would love to tell anyone reading..."GO EARLY!" They are still awaiting the PET scan results to determine if the cancer has spread. Jim is in a serious fight, I realized, as I saw his chemo pump around in a fanny pack around his waist. I sent them home with a couple of things we use, as well as information about Dr. Tennant. Although I would never wish a diagnosis like this on anyone, it feels good for me to be back on the other side, having something to give instead receiving all the time. The Winands are another link in Abbie's chain, of returning all that we have been blessed with. So often, when I am am awake in the middle of the night I worry about things like whether I've sent thank you cards to people or have adequately expressed my gratitude for all that we have received. I think the answer to those questions is "no", but if you are one of the ones to whom I owe a card, phone call, or email, please know that while I'm not currently able to correspond as much as I 'd like, we try every day to pass your kindness on to others.
Abbie woke up right before they left, so Mia sat up on her bed with her a while and talked. On the way to the door Mia asked me why Abbie couldn't talk back to her. How to explain that to a four-year-old without engendering fear of the water??? I told her Abbie got a big owie in her head and that it's kind of like talking to someone on a telephone who can't hear you...Abbie is talking to her body, trying to tell it what to do, but it can't quite hear her well enough yet.
Remle is a woman after my own heart - praising God in the midst of the storm and believing his promises as the ground shift beneath her. You can follow Jim's battle, and pray for his family, by going to www.pray4jim.blogspot.com.
Abbie's tone has been a little bit higher since we've not been doing hyperbaric therapy these past couple of weeks. I am hoping to get that started again next week. In the meantime, we are giving her lots of massages and exercise to keep her comfortable.
I usually don't do this, but I would like to include a story by and about a woman who is one of my mentors (unbeknownst to her). It is lengthy but more than worth the read...
HAIR BRUSH EXPERIENCE
BETH MOORE AT THE AIRPORT
For those of you who do not know Beth Moore, she is an outstanding Bible teacher, author, nationwide speaker and is a married mother of two daughters This is one of her experiences:
April 20, 2005, at the airport in Knoxville, waiting to board the plane, I had the Bible on my lap and was very intent upon what I was doing. I'd had a marvelous morning with the Lord. I say this because I want to tell you it is a scary thing to have the Spirit of God really working in you. You could end up doing some things you never would have done otherwise. Life in the Spirit can be dangerous for a thousand reasons not the least of which is your ego.
I tried to keep from staring, but he was such a strange sight. Humped over in a wheelchair, he was skin and bones, dressed in clothes that obviously fit when he was at least twenty pounds heavier. His knees protruded from his trousers, and his shoulders looked like the coat hanger was still in his shirt His hands looked like tangled masses of veins and bones. The strangest part of him was his hair and nails. Stringy gray hair hung well over his shoulders and down part of his back. His fingernails were long, clean but strangely out of place on an old man. I looked down at my Bible as fast as I could, discomfort burning my face.
As I tried to imagine what his story might have been, I found myself wondering if I'd just had a Howard Hughes sighting. Then, I remembered that he was dead. So this man in the airport...an impersonator maybe? Was a camera on us somewhere? There I sat, trying to concentrate on the Word to keep from being concerned about a thin slice of humanity served on a wheelchair only a few seats from me. All the while, my heart was growing more and more overwhelmed with a feeling for him.
Let's admit it. Curiosity is a heap more comfortable than true concern, and suddenly I was awash with aching emotion for this bizarre-looking old man. I had walked with God long enough to see the handwriting on the wall. I've learned that when I begin to feel what God feels, something so contrary to my natural feelings, something dramatic is bound to happen. And it may be embarrassing. I immediately began to resist because I could feel God working on my spirit and I started arguing with God in my mind.
"Oh, no, God, please, no." I looked up at the ceiling as if I could stare straight through it into heaven and said, "Don't make me witness to this man. Not right here and now. Please. I'll do anything. Put me on the same plane, but don't make me get up here and witness to this man in front of this gawking audience. Please, Lord!" There I sat in the blue vinyl chair begging His Highness, "Please don't make me witness to this man. Not now. I'll do it on the plane."Then I heard it..."I don't want you to witness to him. I want you to brush his hair." The words were so clear, my heart leapt into my throat, and my thoughts spun like a top. Do I witness to the man or brush his hair? No-brainer. I looked straight back up at the ceiling and said, "God, as I live and breathe, I want you to know I am ready to witness to this man. I'm on this, Lord. I'm your girl! You've never seen a woman witness to a man faster in your life. What difference does it make if his hair is a mess if he is not redeemed? I am going to witness to this man."
Again as clearly as I've ever heard an audible word, God seemed to write this statement across the wall of my mind. "That is not what I said, Beth. I don't want you to witness to him. I want you to go brush his hair." I looked up at God and quipped, "I don't have a hairbrush. It's in my suitcase on the plane. How am I supposed to brush his hair without a hairbrush?" God was so insistent that I almost involuntarily began to walk toward him as these thoughts came to me from God's word: "I will thoroughly furnish you unto all good works" (2 Timothy 3:17) I stumbled over to the wheelchair thinking I could use one myself. Even as I retell this story, my pulse quickens and I feel those same butterflies.
I knelt down in front of the man and asked as demurely as possible, "Sir, may I have the pleasure of brushing your hair?" He looked back at me and said, "What did you say?" "May I have the pleasure of brushing your hair?" To which he responded in volume ten, "Little lady, if you expect me to hear you, you're going to have to talk louder than that." At this point, I took a deep breath and blurted out, "SIR, MAY I HAVE THE PLEASURE OF BRUSHING YOUR HAIR?" At which point, every eye in the place darted right at me. I was the only thing in the room looking more peculiar than old Mr. Longlocks. Face crimson and forehead breaking out in a sweat, I watched him look up at me with absolute shock on his face, and say, "If you really want to." Are you kidding? Of course I didn't want to. But God didn't seem interested in my personal preference right about then. He pressed on my heart until I could utter the words, "Yes, sir, I would be pleased. But I have one little problem. I don't have a hair brush.""I have one in my bag," he responded.
I went around to the back of that wheelchair, and I got on my hands and knees and unzipped the stranger's old carry-on, hardly believing what I was doing. I stood up and started brushing the old man's hair. It was perfectly clean, but it was tangled and matted. I don't do many things well, but must admit I've had notable experience untangling knotted hair mothering two little girls. Like I'd done with either Amanda or Melissa in such a condition, I began brushing at the very bottom of the strands, remembering to take my time not to pull. A miraculous thing happened to me as I started brushing that old man's hair.Everybody else in the room disappeared. There was no one alive for those ",moments except that old man and me.
I brushed and I brushed and I brushed until every tangle was out of that hair. I know this sounds so strange, but I've never felt that kind of love for another soul in my entire life. I believe with all my heart, I - for that few minutes - felt a portion of the very love of God. That He had overtaken my heart for a little while like someone renting a room and making Himself at home for a short while. The emotions were so strong and so pure that I knew they had to be God's.
His hair was finally as soft and smooth as an infant's. I slipped the brush back in the bag, went around the chair to face him. I got back down on my knees, put my hands on his knees, and said, "Sir, do you know my Jesus?" He said, "Yes, I do." Well, that figures, I thought. He explained, "I've known Him since I married my bride. She wouldn't marry me until I got to know the Savior." He said, "You see, the problem is, I haven't seen my bride in months. I've had open-heart surgery, and she's been too ill to come see me. I was sitting here thinking to myself, what a mess I must be for my bride."
Only God knows how often He allows us to be part of a divine moment when we're completely unaware of the significance. This, on the other hand, was one of those rare encounters when I knew God had intervened in details only He could have known. It was a God moment, and I'll never forget it. Our time came to board, and we were not on the same plane. I was deeply ashamed of how I'd acted earlier and would have been so proud to have accompanied him on that aircraft. I still had a few minutes, and as I gathered my things to board, the airline hostess returned from the corridor, tears streaming down her cheeks. She said, "That old man's sitting on the plane, sobbing. Why did you do that? What made you do that?"
I said,"Do you know Jesus? He can be the bossiest thing!" And we got to share. I learned something about God that day. He knows if you're exhausted because you're hungry, when you're serving in the wrong place or if it is time to move on, but feel too responsible to budge. He knows if you're hurting or feeling rejected. He knows if you're sick or drowning under a wave of temptation. Or He knows if you just need your hair brushed. He sees you as an individual. Tell Him your need and he will fill it!!
I got on my own flight, sobs choking my throat, wondering how many opportunities just like that one had I missed along the way...all because I didn't want people to think I was strange. God didn't send me to that old man. He sent that old man to me.
John 1:14 "The Word became flesh and made his dwelling among us. We have seen his glory, the glory of the One and Only, who came from the Father, full of grace and truth." Life shouldn't be a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather, to skid in broadside, thoroughly used up, totally worn out, and loudly shouting, "Wow! What a ride! Thank You, Lord!"
Friday, November 10, 2006
The outcome of the moms vs. boys football game last weekend was, of course, a TIE! We found that throwing candy on the ground during a punt is a good distraction technique when playing against eight and nine year olds.
We are very fortunate to have the folks from Litegait, the maker of The Walkable, in town for a conference. They gave a lunchtime presentation to therapists at the children's hospital today, which I got to attend a portion of. Tomorrow they are going to meet us again at the hospital, but this time I am going to bring Abbie along so that can do a one-on-one consultation for her. We will be able to learn so much from them, not only about how to get Abbie walking again, but also about how to use the Walkable in creative ways to help with sitting, crawling, and playing. I was so enthused by the material I heard today that I put Abbie up in the Walkable this evening. I realized that even without orthotics we could still use it, we may just not be able to have her bear as much weight.
It has probably been 8 weeks since she's been up, and that girl always amazes me. She held her head and trunk for 10 minutes straight, looking as if she were thinking "ho-hum, I do this all the time." I was able to get her feet into a good position, with the heels almost all the way down - much more than I expected after this long break. Again, proof that she is improving even when we are not working on certain areas.
I was feeling pretty ragged earlier this week, and when that happens I tend to drift away from my moorings. About the time I was meandering into some serious waves, my sweet friend Julie K. sent me an encouraging note with a Bible verse that made me sit, catch my breath, and recharge, and then allowed me to get up again with a smile. So, I want to leave you with that same verse tonight.
I have not stopped giving thanks for you, remembering you in my prayers. I keep asking that the God of our Lord Jesus Christ, the glorious Father, may give you the Spirit of wisdom and revelation, so that you may know him better. I pray also that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints, and his incomparably great power for us who believe.
Eph. 1: 16-19
Thursday, November 02, 2006
Later that evening, still in somewhat of a funk, I heard a commercial that simply said, "When you feel like giving up, remember why you hung on so long to begin with." Great point.
Tuesday was a terrific day; I felt well, got a lot accomplished and Abbie had a good day as well. God was gracious in giving us this day, because we certainly needed to catch our breath to deal with the Wednesday that followed it.
Abbie was on oxygen all night, but when I went to get her out of bed the cannula wasn't even in her nose, and her sats were 96-97. Being slightly grumpy still, I decided we wouldn't go for a morning walk as we had the previous two days. I felt sort of guilty about that, but God was about to teach me that what is right on one day may not be the right thing on another. Shortly after I began feeding her, Abbie vomited just a little and began coughing out a lot of mucous. This doesn't happen regularly, but it's not totally uncommon either, so I wasn't overly concerned. Then her sats started dropping quickly. I put her on two liters of oxygen, but she continued to drop, all the way down to 82. I bumped her up to three, and then four. She still wasn't quite stable at four liters, and at that point I began considering calling an ambulance because I was home alone.
Thankfully, Debbie arrived shortly after I turned her up to four liters, and quickly did an assessment. She hates seeing Abbie go to the ER as much as I do, but we agreed that we really didn't have a choice, so began packing everything up for the trip.
Dr. E. was an ER doc I hadn't yet met, but with whom I was very impressed. It didn't take him long to burst my bubble by saying, "Plan on her being admitted. This is a high oxygen requirement, especially since she normally doesn't need any. Unless something miraculous happens, like her coming off the oxygen, I think we need to keep her here." Darn it! He suspected, as we did, that Abbie had aspirated something during the vomiting/coughing episodes. He ordered a chest Xray and an IV to start antibiotics.
We went to radiology first, with Abbie being driven by her "Uncle Mike." Mike is the radiology tech we got to know so well when he came to give Abbie a chest Xray each morning in the PICU after her injury. We have seen him many times since, and he has a real soft spot for Abbie. He and I teamed up to sit Abbie on a stool and take a couple quick pictures. As we were loading her back in her chair she broke into a HUGE grin for Mike, who had never seen her smile. His joy was infectious and overrode the sickened feeling I had from being in the ER again.
Back in the ER I worked on slowly weaning the oxgyen. I had her down to 2 1/2 liters when the nurse came to put in the IV. I asked her to wait, knowing that if the line went in, we'd be staying for sure. She got Dr. E's approval to hold off, and within an hour I had Abbie down to one liter, with my hopes rising that we wouldn't be going upstairs.
The chest film came back, showing no evidence of aspiration, but giving an explanation for why Abbie has been on and off oxygen for the last month or so. There is a technical name I am not even going to try to spell, but the bottom line is that in the lower portions of both of her lungs there is a bit of collapsing going on. This is caused by not using that portion of the lung and not moving around enough. As we put the pieces together, they all fit --- after her leg was burned she couldn't wear the orthotics we use for standing, so she hasn't done much standing since then. For a while after she was burned her activity level was much lower as we tried to protect the wound and she guarded it. Her breathing was also much shallower because of the pain she was in.
Just like most things in this journey, it's never one simple issue, there are always secondary, tertiary, and kajillionary things to deal with. I didn't see this one coming, and felt bad that we have allowed her to get to this point. The good news is that is reversible. We are going to concentrate on getting her up, even without orthotics, moving her around a lot, and enouraging her, through activity, to take deep, large breaths.
They gave her a nebulizer treatment before we left the ER, and it helped her significantly. So much so, that by the time we left she was off oxygen. The "miraculous" hurdle Dr. E. had set took only three hours to overcome...praise God. As we were leaving I realized again that I had seen the hand of the Romans 8:28 God. We needed that chest film to figure out what has been going on with Abbie so that we can fix it. Without an acute problem we never would've had an Xray taken. All things work together for good...
She got a neb treatment in the evening and then slept deeply, without oxgyen all night. We plan to give her about 3 treatments a day until we start to see improvements in her lungs. She looks noticeably better and brighter this morning.
Another day, another step -- and even the steps that hurt get us closer to the finish line.
Sunday, October 29, 2006
Right now the second service Sunday School time is dedicated to preparing for the Christmas musical, so I knew Abbie would love being in the midst of the singing. I recorded, "I can't wait to hear you sing again.", and Kathleen reported that when the kids finished a song, Abbie hit her switch to play that message. She also said that when she introduced Abbie to the kids, many of whom did not know her before, Abbie used her switch to say "Hi! My name is Abbie!" I program the messages in sequential order, so Abbie doesn't have too much control over which message plays when she hits her switch. I think God orchestrated things just right for her today so that the kids could recognize there is a smart, friendly little girl in that purple wheelchair.
Abbie also made a little star ornament this morning, with Auntie Kathleen helping her color it. It brought tears to my eyes because I so vividly recall the Sunday School craft Abbie made the day before she got hurt...the construction flower lei that she let me wear to lunch after church. It is sweet for me to see her doing some things she enjoys again, even if she has to do them a bit differently for now.
Our family was blessed that while Abbie was enjoying her time with the kids, the rest of us were able to be together in the service and really focus on the message. It was an important one for me to hear today, and proof that even the most obscure people can teach us meaningful lessons. Pastor McDaniel started off by asking if any of us knew who Shamgar was. To me he sounded like the Viking cousin of Scooby-Doo's buddy, but he was actually one of David's mighty men who served as a judge during a critical time in Israel's history.
The entire commentary about Shamgar takes one verse, Judges 3:31, "After Ehud was Shamgar son of Anath, who slew 600 Philistine men with an oxgoad. He also delivered Israel."
How much can one draw from that tiny verse? With just a little digging there is a gold mine to be had. You have to know that an oxgoad, as may be apparent from the name, was not a weapon of war but rather a 6 to 10 foot long wooden stick with an implement on the end normally used for sharpening plows. I thought a lot today about Shamgar, slaying 600 Philistines with a farming tool. I wondered if sometimes he wished he had a sword instead. I wondered if after Philistine #495 he got weary and discouraged. I wondered if he ever asked God "How much longer, " and "How many more can there be to come against me?"
If he did, I can really relate to him. After a wonderful booster like Abbie's enjoyment of Sunday School, this day has still ended in some weary tears. I feel like I am trying to fight a battle with the wrong tools most of the time. I know there is a race marked out for us, which implies a finish line, but I am tired. I do not want to quit when we may be all the way up to Philistine #552, and as I was praying through this I heard those very familiar words, "My grace is sufficient for thee." Comforting and challenging at the same time.
Ray has been a hero this weekend -- we had an event Friday night at the hotel just down from our house. He rented a room, tucked me into bed for a full night's sleep, and then came home to watch Abbie. I awoke to room service breakfast that included an enormous bowl of fresh berries, my absolute favorite treat. I was a new person. I guess, tonight, he and I are both a little discouraged that that wonderful recharge wore off so quickly. Please pray for our endurance and our faith...not in God, for that is unwavering, but rather the faith that we will walk this all the way to the end without faltering.
I'm sure much of interest happened in Shamgar's life, but yet it boiled down to "he slew 600 and delivered Israel." I wait in anticipation of the day when Abbie's story will be as concise, "She got hurt, God healed her and his Name was glorified. The End"
Wednesday, October 25, 2006
I was most concerned about the Xray, since it would tell us her bone age, thereby telling us roughly how many more years of growth she has left. I was praying to hear "8 or 9" and not "13 or 14". Because brain injuries predispose kids to precocious puberty, I would've been satisfied to hear we were just in the early stages of it. I was in no way prepared to hear what Dr. U. told us. He pulled out the results and explained that there is a two-standard deviation range, which equals about 1 year in Abbie's case, but given that, the radiologist felt that her bones are roughly equivalent to those of a five-year-old. FIVE!!! I started laughing with delight. Her bone age is totally normal. Praise God, praise God, praise God!!
We then went through the results of the blood tests, which focused on hormones related to puberty. They were all within the normal range. These results were correlated to something called the "Tanner Scale" which is used to measure stages of puberty. Abbie was at a Tanner Scale 1, the lowest level, for each hormone! Another hallelujah!
The cherry on top was her thyroid results. I had assumed she was hypothryoidic because of her low voltage. Her free T4 is normal and her TSH is on the low side, but within the normal range. WOW! I thought back to the timing of her blood test and realized we drew it just about the same time we were seeing her voltage really rise. So interesting to see objective data, like the MEAD numbers and blood tests, correlate and point to her marked improvement!
Dr. U. is a terrific physician, who really took time to explain and discuss not only these results, but the future plan for Abbie. We will repeat the labs and Xray in 6 months, just to stay on top of things. I told him, "We are not used to getting such great test results. This is a day to savor!!"
Thank you for your prayers, specifically about the Xray. Our future ballerina still has many years to grow!!
Monday, October 23, 2006
After a twirl at flying, we did some more exciting things. We used the swing to support most of her body weight, which allowed us to get Abbie on her hands and knees. She amazed us as how relaxed each of her limbs were. Her knees were bending past 90 degrees while her arms stretched out to the floor as her soft hands touched the mat. She did so well we practiced crawling motions while she was suspended. This makes sense because she doesn't really have the strength yet to support her entire body weight, so when she is asked to she becomes tense under the pressure and strain. Without the requirement to bear all her weight she was able to relax and enjoy the movements.
The past couple of days have tested my commitment to reinforcing her language opportunities. I'm talking about Abbie having her switch at night. It has been a blessing to have her tell me when she is cold, wet, uncomfortable, needs to cough or even bored. However, it has not been conducive to great sleep. Last night I finally had to tell her, "Abbie, I am going to sleep. You have a new diaper, you are all comfy and warm, and Mommy is tired. If I hear your switch I won't be coming again." It took about six hits on her switch for her to believe that I really wasn't going to respond, and then she fell back to sleep. I smiled under the covers though, with how reminscent it was of toddler bedtime battles.
She is so "with it" now, that every interaction is a joy and filled with anticipation. Hearing her little voice as she was "crawling" today, with differing inflections, tones and the sweetness that has been missing for so long erased all the fatigue of sleepless nights. What we really need prayer for now are our own stamina and imagination, as we seek new ways to keep pushing her and new ideas to bring joy to her life.
Sunday, October 22, 2006
So, I programmed in two messages: "Mommy, I need you!" and "Mommy, could you come here, please?" I tucked her in, put the switch in her hand and told her that if she needed me, she could call me. I didn't even get a chance to step away from the bed before she took me up on the offer. I laughed and was happy she'd caught on so quickly. That happiness continued over the next 30 minutes as she called me about 15 times. Sometimes she needed to cough and wanted to be sure I was there to help or clean it up. Other times she just wanted to chat. Putting myself in her shoes, it is a basic necessity to be able to call someone when you can't get out of bed...I don't know why it took me so long to think of this.
We saw another new skill today. I was putting her on her tummy, and she was doing a good job holding herself up on her elbows, which isn't new. She held her head off the floor, which also isn't new. What was surprised us was watching her lift her head until she was looking straight forward. I haven't really seen her be able to hold that position since just a couple months after her injury when she was using her high tone instead of her own strength. Another glimpse into the wonderful things happening in Abbie's body and brain right now.
Saturday, October 21, 2006
I love going to PT when Lynette makes comments that match what we are seeing at home. She was bouncing Abbie on a ball and looked up at me in surpise, saying "Her spine is so straight now! There's no curve any more!" I laughed and nodded, and told her that Abbie is now a "29"!! We are also noticing that her troublesome left arm is relaxing and straightening out, and the range of motion in her ankles is better than it's ever been even though she hasn't been wearing orthotics since she was burned. God is at work! The blessing is that I am watching things change that we haven't been working on, which lifts such a tremendous burden from my shoulders. Any mom of a challenged child will tell you that there is never a night when you go to bed feeling you have done enough, and that's certainly how I feel. God is reminding me again that he doesn't need me to aid him in Abbie's healing, He is simply allowing me the privilege of joining in this adventure.
At her speech group today there was a special treat - Lisa, our therapist, brought her 12-week-old Yorkshire Terrier, Mara. The kids LOVED her, but I'm not so sure Mara was as enthusiastic. Abbie hit her switch innumerable times to say "I want to see Mara" and had wonderful soft hands and arms to pet her with.
I took the boys out for an errand tonight and returned to see Ray sitting in the family room with a visitor. We weren't expecting anyone, and I didn't recognize him from the back. Once we got inside I realize we had a special guest...Darrell from our PICU days. Darrell was a friend of a friend when Abbie got hurt, and came to the PICU for the first time with our mutual friend. After that he began showing up at midnight, saying "You should go get something to eat." Since I did the nightshift with Abbie, those midnight hamburgers were a lifesaver. He soon made a routine of coming at midnight and staying until around 4am. At the time he was a grad student and said simply, "You need help, and I'm able to be here..." What a blessing! We hadn't seen Darrell in almost 18 months, during which time he joined the Marine Reserve, went to Boot Camp and training and is now preparing for Officer Candidate School, with a Flight School follow-on. I was excited to hear that the plans we'd discussed in the wee hours had materialized! I was also excited to hear his reaction to Abbie, "Wow! The changes are so drastic since I haven't seen her in a while!" Love that!! She was talking with her switch and making lots of facial expressions for him. When I said that with her switch we've been able to confirm that she's cognitively intact he said, "Yea, isn't that what we were all saying from day 1?"
As I watched Darrell leave I was again overwhelmed by just how many hands have lifted us through this journey, and how our hearts will be bound to theirs forever.