Since we were on vacation last week I decided to wait to really begin Abbie's new neurodevelopmental program until this week when we could be consistent from the start. It's only been three days and we can already see that our intution about her response was correct. We are already noting changes, she is improving every day and it is incredibly motivating for each of us -- which is good because this program requires all of us to contribute.
I have been so impressed with my boys, each taking an arm or leg to help Abbie complete an exercise. I honestly hadn't planned on including the twins in the patterning team, but they refused to be left out. They are doing wonderfully, listen to instruction well, and most importantly, give Abbie constant encouragement while she works. Her program has blossomed into a "Team Vara" project, and that is a blessing for all of us.
Some particulars: one of her activities is "phrase building" where I make up a three word phrase then say the first word, followed by the first and second words together, then finally the first, second and third words. I use anything from "Abbie dances ballet" to "pigs smell stinky" (from our recent trip to the zoo). I call them her "stories", and we have to do them as often as possible, with her looking right at my mouth. At the end of the first day of program Abbie was wide awake long after bedtime. So, I said, "Time for stories! If you want them, you have to look right at my mouth." Within about a second her eyes were locked onto my face and we began. This was really exciting to me because we are stil working so hard on her vision!
Many of the exercises are physically demanding for Abbie, from being moved in a crawling pattern to her favorite, "tuck-in/blast-out" where we curl her into a little ball and then "blast out" all her limbs. In just three days we have seen such an improvement in her tone, especially in her arms. She also knows all of the patterns already, so often we have to tell her to relax and let us do it for her instead of trying to help us.
It's also been interesting to see changes in areas we haven't been working on directly, like her mouth. We do have exercises for her mouth, but I lost the special piece of equipment that we use while we were in Dallas, and we're awaiting the arrival of a new one. So. right now she's off the hook for those exercise, but I think the general stimulation of the program is causing her mouth tone to improve, cutting down on drooling and suctioning immensely!
As much as we cherish her, our whole life does not revolve around Abbie. With four other kids we get joy and laughter from all directions. An example is a conversation I had with Matthew on the way to the store a couple nights ago. He said that girls "freak him out." I was wondering if he is entering the "freaked out because I'm starting to like them" phase, so I asked what was so troublesome about girls. He said, "Ugh! Mom, hardly any of them even know how to play dodgeball!!" I got a good giggle from that, and a bit of relief too. In his mind it's still all about playground prowess.
Also want to pass on some terrific news I got this morning. Our friend Jim Winand is at Dr. Tennant's clinic, being supported as he fights stage 4 colon cancer. His wife, Remle emailed me that she almost called yesterday morning to tell me they were quitting because it was so hard and Jimmy was in so much pain. Then, in the afternoon they met with Dr. Tennant...they are in the healing range, his body has responded, and they think the cancer may already be gone (they will be testing for that at the end of the week.) Praise God!! Please continue to pray for Jim's pain to abate, and for their homecoming to be soon. You can check in on them at www.pray4jim.blogspot.com
God is so good to us, it overwhelms me!
Wednesday, March 21, 2007
Friday, March 16, 2007
Family Vacation and Fellow Travelers
We are back after a wonderful getaway to Kaua'i, with many details to share. But, before I dive into that I know many of you have been faithfully praying for Caleb, ("Kamakana" to his family), so I want to give you a current status.
I was able to meet his dad and mom, Brandon and Kehau, as well as his baby brother last Thursday. I didn't know what to say at first except, 'We have been where you are." Brandon shared details of the event with me, saying that Kehau was at Bible study when Caleb was found. After they arrived at Kapiolani, Brandon was taken to a separate room (I knew just the room he was talking about.) They then came in and told him that his son had been pronounced dead. Hearing this, Brandon went running to the trauma room to pray over his son and call him back. As his prayers were going up, Caleb's heart started beating again. God said, "YES!" As they asked about how Abbie is, I shared that although to human eyes it may look to some that we are still awaiting our miracle, God said "YES!" to us on May 3, 2004, just as their pleas were answered last week. Now, for both Caleb and Abbie it's just a matter of walking the path marked out for them. I would have NEVER have chosen for it to take this long, but as I continue to see every day, there are abundant reasons.
I visited Caleb again today, in time to hear the nurse say they are turning the vent setting down to 8, and beginning to feed him more through his NG tube. I watched as he consistently over-breathed the ventilator, and also as his respiratory rate rose dramatically as visitors talked to him. "Look!" I said to Kehau, "Look at his numbers...he is listening!" Caleb has not had any swelling in his brain, so given what he has been through he is doing terrific!! I witnessed the same grace that carried Ray and I surround Brandon and Kehau. Please keep all of them in your prayers. They have set up a blog for Caleb: www.prayforcaleb.blogspot.com
Now to Miss Abbie...this was the first time that we had nursing help during a vacation. I was hesitant about this, not wanting her to be "left out". Ray was equally firm in wanting me to get a chance to relax and spend time with the other kids. Since he is on Kaua'i for business every week, he was able to coordinate to have a fantastic nurse come each of the four days we were there. The first day I hung out with Kathleen and Abbie quite a bit, just to build up a comfort level. I learned what a broad background Kathleen has, but more importantly what a caring person she is. When Ray came to lure me to the pool, Abbie scowled as I explained that I would be right back. By the fourth day Abbie smiled as she heard Kathleen arrive in the morning! I decided that instead of trying to convince Kathleen about how great Abbie is doing, I would let Abbie do most of the convincing herself. Boy, did she!
Towards the end of the first day, Kathleen said, "She can see me, can't she?? And..she's listening to everything we say!" She was surprised at how in-tune and responsive Abbie was. The third day Kathleen almost teared up as she told me, "I asked her if she wanted to do her ballerina stretches, and she nodded her head 'yes', so we did them!" By the end of our stay in Kaua'i Kathleen knew, as the rest of us do, that Abbie is right there, just trying to make her body work again.
It seems that we may be getting a break from the "high liver phase" middle of the night wake-ups. The third night we were there the time shifted to 4am, and the first night we were home we all slept through the night!! When we arrived home a new air purifier was waiting, so I placed it at the foot of Abbie's bed that night. I don't know if it was solely responsible, but that night she slept all night with sats of 99. Her tone is incredible -- soft, open hands, loose arms resting down by her side, legs that bend and move easily.
And, it seems we've hit another skin healing spike, both with her burn and with her trach stoma. The burned area is now all level, with no little valleys or pockets left. The few discolored spots left are fading quickly. There will come a day when all will be perfect skin again! Yesterday I heard this really funny whistling noise, and then realized it was air coming through her trach. The opening has gotten so small that it creates a little symphony when air passes.
Carol came to give Abbie healing touch yesterday and was overjoyed with how she looked. At the end of a very powerful session she said, "You know, since you went to Texas I think her healing is coming faster and faster." I totally agree, and we are so excited!
I was able to meet his dad and mom, Brandon and Kehau, as well as his baby brother last Thursday. I didn't know what to say at first except, 'We have been where you are." Brandon shared details of the event with me, saying that Kehau was at Bible study when Caleb was found. After they arrived at Kapiolani, Brandon was taken to a separate room (I knew just the room he was talking about.) They then came in and told him that his son had been pronounced dead. Hearing this, Brandon went running to the trauma room to pray over his son and call him back. As his prayers were going up, Caleb's heart started beating again. God said, "YES!" As they asked about how Abbie is, I shared that although to human eyes it may look to some that we are still awaiting our miracle, God said "YES!" to us on May 3, 2004, just as their pleas were answered last week. Now, for both Caleb and Abbie it's just a matter of walking the path marked out for them. I would have NEVER have chosen for it to take this long, but as I continue to see every day, there are abundant reasons.
I visited Caleb again today, in time to hear the nurse say they are turning the vent setting down to 8, and beginning to feed him more through his NG tube. I watched as he consistently over-breathed the ventilator, and also as his respiratory rate rose dramatically as visitors talked to him. "Look!" I said to Kehau, "Look at his numbers...he is listening!" Caleb has not had any swelling in his brain, so given what he has been through he is doing terrific!! I witnessed the same grace that carried Ray and I surround Brandon and Kehau. Please keep all of them in your prayers. They have set up a blog for Caleb: www.prayforcaleb.blogspot.com
Now to Miss Abbie...this was the first time that we had nursing help during a vacation. I was hesitant about this, not wanting her to be "left out". Ray was equally firm in wanting me to get a chance to relax and spend time with the other kids. Since he is on Kaua'i for business every week, he was able to coordinate to have a fantastic nurse come each of the four days we were there. The first day I hung out with Kathleen and Abbie quite a bit, just to build up a comfort level. I learned what a broad background Kathleen has, but more importantly what a caring person she is. When Ray came to lure me to the pool, Abbie scowled as I explained that I would be right back. By the fourth day Abbie smiled as she heard Kathleen arrive in the morning! I decided that instead of trying to convince Kathleen about how great Abbie is doing, I would let Abbie do most of the convincing herself. Boy, did she!
Towards the end of the first day, Kathleen said, "She can see me, can't she?? And..she's listening to everything we say!" She was surprised at how in-tune and responsive Abbie was. The third day Kathleen almost teared up as she told me, "I asked her if she wanted to do her ballerina stretches, and she nodded her head 'yes', so we did them!" By the end of our stay in Kaua'i Kathleen knew, as the rest of us do, that Abbie is right there, just trying to make her body work again.
It seems that we may be getting a break from the "high liver phase" middle of the night wake-ups. The third night we were there the time shifted to 4am, and the first night we were home we all slept through the night!! When we arrived home a new air purifier was waiting, so I placed it at the foot of Abbie's bed that night. I don't know if it was solely responsible, but that night she slept all night with sats of 99. Her tone is incredible -- soft, open hands, loose arms resting down by her side, legs that bend and move easily.
And, it seems we've hit another skin healing spike, both with her burn and with her trach stoma. The burned area is now all level, with no little valleys or pockets left. The few discolored spots left are fading quickly. There will come a day when all will be perfect skin again! Yesterday I heard this really funny whistling noise, and then realized it was air coming through her trach. The opening has gotten so small that it creates a little symphony when air passes.
Carol came to give Abbie healing touch yesterday and was overjoyed with how she looked. At the end of a very powerful session she said, "You know, since you went to Texas I think her healing is coming faster and faster." I totally agree, and we are so excited!
Thursday, March 08, 2007
Neurodevelopmental Assessment
Yesterday was the first time we had seen Linda Kane, Abbie's neurodevelopmentalist, in 16 months. I was very curious to see what her impression of Abbie would be, because we had not kept up with the neurodevelopmental program she'd designed for us, but I felt like Abbie had made lots of progress in spite of that.
Linda was thrilled with how Abbie looked, what she's doing now, and commented that she is "in a much different place" now. Yipee!! She made a comment that matched almost exactly something I'd verbalized to Ray the night before. Abbie is now in a place where she is ready to recieve all the input we will be giving her through the program. She'll be able to take the input, use it, synthesize it, and move forward. It is so exciting and motivating! We can't wait to get started!
Part of the assessment is recorded in a grid that covers six areas (gross motor, expressive language, fine motor, visual, auditory, and tactility). Each of these areas has nine levels of mastery. Abbie had a total of five level gains on this assessment, with additional progress within some other levels. This was amazing to me since this would be a good assessment even if we'd been faithful with the program.
Of course, on the day we saw Linda, Abbie was not feeling well. She began vomiting on Monday afternoon, so I put her on clear liquids for the rest of the day. We tried her normal food on Tuesday morning. That effort lasted about 10 minutes. I suspected that she might be in the midst of a liver cleansing period because it's been 7 weeks since we went to Dallas. The liver replacement cycle is 6-8 weeks, so we're right at the point where a whole "new" healthy liver may be ready to get rid of all the toxins she's had stored in there for so long now. So, I started giving her liver cleansing liquids, and also began giving her an overnight drip of extra water and a liver cleanse I blended up for her. She's been much happier on this regimen, but I suppose if I were nauseated I would be much happier on chicken broth, water, and juices than milk and eggs!
As I was reading through my new favorite book, "Energy Medicine: The Scientific Basis" there was a whole chapter on structural integration. Dr. Oschman covers in detail the effects of misalignments in the body (I was thinking of Abbie's hips) and problems with the fascia (connective tissues). Abbie's shortened tendons and adhering fascia in other parts of the body may be really impeding the flow of energy in her body, and therefore may be hampering her healing. The best approach to recitify this is something called "Rolfing", or "Structural Integration". After completing the chapter, I was convicted that Rolfing treatments could really help Abbie, so I googled Rolfing in Hawaii (thank you Lord, for Google) and found three practitioners on Oahu. The first one on my list had a phone prefix in my area, but a woman answered the phone and said he'd moved to Seattle. I was about to hang up the phone in disappointment when she asked if she could help because she is also a Rolfer. Hurrah! She lives very close to us, so I made an appointment for 3/23. I asked Linda Kane what she thought of Rolfing, and she enthusiastically endorsed it, saying many of clients have seen great benefit. "But," she cautioned, "it's really difficult to find a practitioner." I smiled and told her that God has already provided for that need! I am anxious to try this. You can read about this approach at www.rolf.org.
So, we had a wonderful day yesterday. Abbie's appointment was in Waimanalo, which gave us the opportunity to relish that beautiful drive. The weather was perfect, all was well...and then Ray came home with news that seemed so incongruent with the joy and beauty we'd been surrounded with all day. A co-worker called him on the way home because her little nephew drowned the day before, and is now fighting for his life in the same PICU where Abbie's journey began. I couldn't reconcile, as I looked out at the fading golden light of evening, that at that very moment a family gathered in a windowless room, overwhelmed with the grief and fear I recall too vividly. Please, please pray with us that the Lord would restore Caleb to his family!
Linda was thrilled with how Abbie looked, what she's doing now, and commented that she is "in a much different place" now. Yipee!! She made a comment that matched almost exactly something I'd verbalized to Ray the night before. Abbie is now in a place where she is ready to recieve all the input we will be giving her through the program. She'll be able to take the input, use it, synthesize it, and move forward. It is so exciting and motivating! We can't wait to get started!
Part of the assessment is recorded in a grid that covers six areas (gross motor, expressive language, fine motor, visual, auditory, and tactility). Each of these areas has nine levels of mastery. Abbie had a total of five level gains on this assessment, with additional progress within some other levels. This was amazing to me since this would be a good assessment even if we'd been faithful with the program.
Of course, on the day we saw Linda, Abbie was not feeling well. She began vomiting on Monday afternoon, so I put her on clear liquids for the rest of the day. We tried her normal food on Tuesday morning. That effort lasted about 10 minutes. I suspected that she might be in the midst of a liver cleansing period because it's been 7 weeks since we went to Dallas. The liver replacement cycle is 6-8 weeks, so we're right at the point where a whole "new" healthy liver may be ready to get rid of all the toxins she's had stored in there for so long now. So, I started giving her liver cleansing liquids, and also began giving her an overnight drip of extra water and a liver cleanse I blended up for her. She's been much happier on this regimen, but I suppose if I were nauseated I would be much happier on chicken broth, water, and juices than milk and eggs!
As I was reading through my new favorite book, "Energy Medicine: The Scientific Basis" there was a whole chapter on structural integration. Dr. Oschman covers in detail the effects of misalignments in the body (I was thinking of Abbie's hips) and problems with the fascia (connective tissues). Abbie's shortened tendons and adhering fascia in other parts of the body may be really impeding the flow of energy in her body, and therefore may be hampering her healing. The best approach to recitify this is something called "Rolfing", or "Structural Integration". After completing the chapter, I was convicted that Rolfing treatments could really help Abbie, so I googled Rolfing in Hawaii (thank you Lord, for Google) and found three practitioners on Oahu. The first one on my list had a phone prefix in my area, but a woman answered the phone and said he'd moved to Seattle. I was about to hang up the phone in disappointment when she asked if she could help because she is also a Rolfer. Hurrah! She lives very close to us, so I made an appointment for 3/23. I asked Linda Kane what she thought of Rolfing, and she enthusiastically endorsed it, saying many of clients have seen great benefit. "But," she cautioned, "it's really difficult to find a practitioner." I smiled and told her that God has already provided for that need! I am anxious to try this. You can read about this approach at www.rolf.org.
So, we had a wonderful day yesterday. Abbie's appointment was in Waimanalo, which gave us the opportunity to relish that beautiful drive. The weather was perfect, all was well...and then Ray came home with news that seemed so incongruent with the joy and beauty we'd been surrounded with all day. A co-worker called him on the way home because her little nephew drowned the day before, and is now fighting for his life in the same PICU where Abbie's journey began. I couldn't reconcile, as I looked out at the fading golden light of evening, that at that very moment a family gathered in a windowless room, overwhelmed with the grief and fear I recall too vividly. Please, please pray with us that the Lord would restore Caleb to his family!
Monday, March 05, 2007
A New Clock
Sometimes it takes a few days of observation to start putting pieces together. Last week Abbie started something new. Around 7pm every evening. all the tone in her body would disappear. We could do anything we wanted with her arms and legs, she became an absolute rag doll. By the morning her tone would have returned. This went on for about five evenings in a row, and then the time of relaxation shifted to 9pm. When that happened, she awoke in the morning as soft as she'd been the night before, and stayed looser than normal through the day.
Intrigued that the time was usually so exact, and that a two hour shift had changed the effect I wondered if it was related to the organ phases in her body. As I've described before, there are twelve circuits we are treating, corresponding to twelve organs. Each of these circuits has a "high phase" and a "low phase" during the day. I went to the textbook from Dr. Tennant's seminar and found that at 7pm the pericardium circuit goes into high phase, and at 9pm it's the "Triple Heater" circuit (related to eastern medicine...too long to explain here). That was sort of interesting, but didn't mean much until I looked a little deeper.
Being a circuit, there are more things affected than just the namesake, so I found that located on the pericardium circuit are the cardiovascular and parasympathetic systems, while the Triple Burner has the lymph, eye and sympathetic system. Hmmm....parasympathetic and sympathetic. These systems are at the base level of control, and have not been operating correctly since Abbie's injury. Could it be that we are getting progress in these systems which is showing up in their high phases?? No one can say for sure, since Abbie is the first to travel this path, but it is interesting.
The Organ Phase clock may also be playing into Abbie's oxygen need. Lately she's been needing extra oxygen from around 11am to 3pm in the afternoon. There's no real change in her respiratory system, and her lungs sound the same, but her sats drop. Looking at the chart again, this time I was more interested in the what circuits were in low phase at that time, because their names were very familiar to me...Gall Bladder and Liver. Abbie has trouble maintaining voltage in these circuits. So, I am thinking that during their low phase, since they already lack voltage, they just drop off the cliff. As soon as their low phase is over, Abbie's sats generally pop right back up and she doesn't need oxygen any more.
So, Abbie's new clock may have a lot to tell us about why some symptoms present and then disappear, what progress she's making, and just how much the electrical system impacts overall health.
On that note, if what I am talking about sounds like gobbly-gook, but you'd like to understand it better, please get ahold of the book "Energy Medicine: The Scientific Basis" by James Oschman. Dr. Tennant gave me this book to read while I was in Dallas. I am still working my way through it but am absolutely amazed so far. It's expensive for a paperback, but worth every cent!
We are taking Abbie to see Linda Kane, her neurodevelopmentalist, on Wednesday. Everything I am learning re-convicts me about the importance of doing a ND program with Abbie. It is going to challenge us timewise, but we are committed to getting it done each day. I will be curious to see what Linda's assessment of Abbie is since we haven't seen her in a while. Please pray that Abbie would be bright and alert on Wednesday morning.
School continues to go well. I am so impressed with the graduate students who are working with the kids. Each and every time we go they have done something to improve the program. It has also been exciting to watch their development as therapists, as they begin to independently assess and problem solve.
All our days are good, and I pray the same for you!
Intrigued that the time was usually so exact, and that a two hour shift had changed the effect I wondered if it was related to the organ phases in her body. As I've described before, there are twelve circuits we are treating, corresponding to twelve organs. Each of these circuits has a "high phase" and a "low phase" during the day. I went to the textbook from Dr. Tennant's seminar and found that at 7pm the pericardium circuit goes into high phase, and at 9pm it's the "Triple Heater" circuit (related to eastern medicine...too long to explain here). That was sort of interesting, but didn't mean much until I looked a little deeper.
Being a circuit, there are more things affected than just the namesake, so I found that located on the pericardium circuit are the cardiovascular and parasympathetic systems, while the Triple Burner has the lymph, eye and sympathetic system. Hmmm....parasympathetic and sympathetic. These systems are at the base level of control, and have not been operating correctly since Abbie's injury. Could it be that we are getting progress in these systems which is showing up in their high phases?? No one can say for sure, since Abbie is the first to travel this path, but it is interesting.
The Organ Phase clock may also be playing into Abbie's oxygen need. Lately she's been needing extra oxygen from around 11am to 3pm in the afternoon. There's no real change in her respiratory system, and her lungs sound the same, but her sats drop. Looking at the chart again, this time I was more interested in the what circuits were in low phase at that time, because their names were very familiar to me...Gall Bladder and Liver. Abbie has trouble maintaining voltage in these circuits. So, I am thinking that during their low phase, since they already lack voltage, they just drop off the cliff. As soon as their low phase is over, Abbie's sats generally pop right back up and she doesn't need oxygen any more.
So, Abbie's new clock may have a lot to tell us about why some symptoms present and then disappear, what progress she's making, and just how much the electrical system impacts overall health.
On that note, if what I am talking about sounds like gobbly-gook, but you'd like to understand it better, please get ahold of the book "Energy Medicine: The Scientific Basis" by James Oschman. Dr. Tennant gave me this book to read while I was in Dallas. I am still working my way through it but am absolutely amazed so far. It's expensive for a paperback, but worth every cent!
We are taking Abbie to see Linda Kane, her neurodevelopmentalist, on Wednesday. Everything I am learning re-convicts me about the importance of doing a ND program with Abbie. It is going to challenge us timewise, but we are committed to getting it done each day. I will be curious to see what Linda's assessment of Abbie is since we haven't seen her in a while. Please pray that Abbie would be bright and alert on Wednesday morning.
School continues to go well. I am so impressed with the graduate students who are working with the kids. Each and every time we go they have done something to improve the program. It has also been exciting to watch their development as therapists, as they begin to independently assess and problem solve.
All our days are good, and I pray the same for you!
Friday, February 23, 2007
Her Own Story
Aloha! I know I've been missing in action for quite a while now. I was just getting my legs back under me after our journey to Dallas, and then I accompanied Ray to Las Vegas, where he had a conference. My mom flew in from Oregon to keep the kids for us so that we could get away together, the first time since Abbie's injury. What a blessing! The chance to sleep in a little bit and operate without a set schedule was a wonderful break. We returned home last Wednesday afternoon, in time to welcome houseguests that evening. That week also brought Dr. Tennant back to Hawaii to lecture and teach. To say it 's been a whirlwind...well, I feel a little like Dorothy at this point.
To catch up on Abbie: Dr. Tennant and I came to the same conclusion on the same day. Abigail Faith is going to write her own story, and perhaps in retrospect we will understand it all. We are walking a path not traveled before -- no one has ever tried to heal an anoxic brain injury using the methods we are employing. So, we keep track of her voltage, track her progress, and note indications of change, but just when we think we know where we are going, Abbie throws us a curveball.
In some ways, though, it is much easier not having a path to follow -- there are no parameters, no targets to meet, no timelines. Mentally, this really gives me a break and allows me to sit back and be a spectator to what is unfolding in Abbie.
Abbie is currently on day 3 of Omnicef for an adenoid infection. She spiked a fever last Wednesday, and by Friday was sounding like a full-grown pig rooting for its dinner. There wasn't a whole lot of sleeping at night for her or me. During the night on Friday the congestion in her sinuses seemed to be really interfering with her breathing, so I called our beloved ENT on Saturday morning. She squeezed us in and ran a scope through Abbie's nose to find swollen adenoids with some blood on them. Abbie is feeling better and sounding more like a piglet these days than a full-grown porker.
Although she is still on oxgyen we took her to school today. She and I had a conversation about it at 4am, where she was very clear about her desire to go. I am glad we went. After a brief catnap Abbie perked up and did well with her switch. She and I had a good time during "recess" as well. I had her sitting right in front of me as we played with a vibrating frog. I turned it off and put her next to her. I asked her to find it and turn it on. She quickly found it visually, and after I'd reassured her that I'd hold her if she used her arm, she lifted her arm up to turn it on (I helped with the aiming a bit). She did this a number of times when we asked her. It may sound minor, but it's new, and that's what counts!
Our houseguests, John, Donna and Sarah Belew, journeyed from Georgia to spend a few days in paradise. I remembered John as the "new lieutentant" when I was at Fort Lewis. The fact that he's now a major makes me feel old. John has regularly posted encouraging and strengthening messages at Abbie's site, so I was excited to see them. One evening he asked to hold Abbie as we talked. To see someone else love your child so tenderly is overwhelming. To me, it reiterated that we've never been abandoned, never been alone. John holding Abbie was the literal picture of how she has been carried all this time by hands not our own.
The Lord often teaches me lessons in short phrases of four or five words. I suppose it's because he's well aware of my limitations. This week, though, perhaps because I've been stretched so thin lately, He's down to just one word. His word for me is "remain"! I was reading John 20 and noted that Mary remained at the tomb after John and Peter left. Because she stayed Mary was the first to see the resurrected Christ. That same day I heard a message about how a tree in winter just stands there, looking as if nothing is going on. But, because it remains, spring comes and it blossoms. So, I am grateful that my current assignment is just to remain. He is not telling me to walk, fight, knock, proclaim...for now I stand, resolute but still, waiting for the spring that I can sense moving in.
To catch up on Abbie: Dr. Tennant and I came to the same conclusion on the same day. Abigail Faith is going to write her own story, and perhaps in retrospect we will understand it all. We are walking a path not traveled before -- no one has ever tried to heal an anoxic brain injury using the methods we are employing. So, we keep track of her voltage, track her progress, and note indications of change, but just when we think we know where we are going, Abbie throws us a curveball.
In some ways, though, it is much easier not having a path to follow -- there are no parameters, no targets to meet, no timelines. Mentally, this really gives me a break and allows me to sit back and be a spectator to what is unfolding in Abbie.
Abbie is currently on day 3 of Omnicef for an adenoid infection. She spiked a fever last Wednesday, and by Friday was sounding like a full-grown pig rooting for its dinner. There wasn't a whole lot of sleeping at night for her or me. During the night on Friday the congestion in her sinuses seemed to be really interfering with her breathing, so I called our beloved ENT on Saturday morning. She squeezed us in and ran a scope through Abbie's nose to find swollen adenoids with some blood on them. Abbie is feeling better and sounding more like a piglet these days than a full-grown porker.
Although she is still on oxgyen we took her to school today. She and I had a conversation about it at 4am, where she was very clear about her desire to go. I am glad we went. After a brief catnap Abbie perked up and did well with her switch. She and I had a good time during "recess" as well. I had her sitting right in front of me as we played with a vibrating frog. I turned it off and put her next to her. I asked her to find it and turn it on. She quickly found it visually, and after I'd reassured her that I'd hold her if she used her arm, she lifted her arm up to turn it on (I helped with the aiming a bit). She did this a number of times when we asked her. It may sound minor, but it's new, and that's what counts!
Our houseguests, John, Donna and Sarah Belew, journeyed from Georgia to spend a few days in paradise. I remembered John as the "new lieutentant" when I was at Fort Lewis. The fact that he's now a major makes me feel old. John has regularly posted encouraging and strengthening messages at Abbie's site, so I was excited to see them. One evening he asked to hold Abbie as we talked. To see someone else love your child so tenderly is overwhelming. To me, it reiterated that we've never been abandoned, never been alone. John holding Abbie was the literal picture of how she has been carried all this time by hands not our own.
The Lord often teaches me lessons in short phrases of four or five words. I suppose it's because he's well aware of my limitations. This week, though, perhaps because I've been stretched so thin lately, He's down to just one word. His word for me is "remain"! I was reading John 20 and noted that Mary remained at the tomb after John and Peter left. Because she stayed Mary was the first to see the resurrected Christ. That same day I heard a message about how a tree in winter just stands there, looking as if nothing is going on. But, because it remains, spring comes and it blossoms. So, I am grateful that my current assignment is just to remain. He is not telling me to walk, fight, knock, proclaim...for now I stand, resolute but still, waiting for the spring that I can sense moving in.
Monday, February 05, 2007
Looking Ahead
Near the end of our trip to Dallas. I like this picture because it says much to me about what is going on inside Abbie – looking out, waiting for tomorrow, patiently hoping, quietly knowing.We got the lab results for Abbie's hormone tests late last week. As expected her cortisol levels were very high in each of the four samples we took (four different times of the day). Dr. Tennant wrote that there's not much we can do about this until "the injury heals". The initial let-down in my quest for a "quick-fix" booster was quickly counteracted by a re-reading of his message. Until the injury heals...we are now approaching her care with that end point in mind...a healing of the injury! There is also an issue with her TSH being very high, yet her having normal thyroid levels. Apparently, this can indicate a problem with iodine loading, so we'll also be testing that soon. Abbie's DHEA levels were very low, and this hormone is especially needed when cortisol levels are high. In doing research I've found all sources recommend that DHEA supplements not be given to children, but then I found this revealing summary on MedlinePlus,
Children (younger than 18 years):
The dosing and safety of DHEA are not well studied in children. In theory, DHEA could interfere with normal hormone balance and growth in children
So, if the biggest theoretical concern is that DHEA supplementation could interfere with normal hormone balance, then this certainly doesn't apply to Miss Abbie who is nowhere close to normal right now. We're getting pretty used to researching things "not well studied" and I'm sure we'll be able to come up with a prudent approach for this as well.
I am actually running out the door right now to go see my friends Remle and Jim -- please pray for them! The whole story is at www.pray4jim.blogspot.com . Jim is fighting colon cancer, and after surgery last week found out he is stage 4. At times like this I plead with God to use every ounce of what He's taught us over these past few years to help me minister to others finding their way in the dark.
Abbie's Hands
These are Abbie’s nice soft hands. Exciting for two reasons: her hands are relaxed and in a good position, and the tone in her arms is low enough to allow her to keep her hands together easily. Again, this is something she could not easily do last month.
She is also getting stronger, and sometimes I have to consciously remind myself that what she is doing easily now used to be impossible. The other day I was pulling her to a sitting position in bed and her head did not lag at all, she just pulled it right up with her body. When we were at the park last Saturday she was sitting between my legs facing out – after a while I noticed I just had my hands near her, to catch her “just in case”, but she was sitting up on her own.
She is also getting stronger, and sometimes I have to consciously remind myself that what she is doing easily now used to be impossible. The other day I was pulling her to a sitting position in bed and her head did not lag at all, she just pulled it right up with her body. When we were at the park last Saturday she was sitting between my legs facing out – after a while I noticed I just had my hands near her, to catch her “just in case”, but she was sitting up on her own.
Getting Readjusted
I found this on the front porch of the home we stayed in while in Dallas. We normally entered through the garage, so it was a week before I opened the front door to find this amazing message – on one page I had the reminder to believe, and on the next page the reminder that love always wins! He has always prepared our path long before we walk it!
I apologize for being late in getting a “Post-Dallas” update written. Last week was a whirlwind of activity and readjustment. We got Abbie’s long awaited stander on Tuesday. There were some other pieces of equipment that we’d also been wanting to get for Abbie, and they all arrived on the same day! It was like Christmas in January. She looks wonderful in her stander, and we can now truly see how long her legs are – she really is a ballerina-to-be! We also got a special needs stroller for her. What a blessing! I recently purchase a carseat for her, in case we needed it during our trip. So, now we can go out and about without the clunky old wheelchair.
We did just that on Saturday, when I took her to Waimanalo Beach Park to watch RJ’s baseball game. That park, I still can’t decide if the patch of land was stolen from the sea, or given up by the mountains, and I marveled that we got to relax in such a beautiful spot. Abbie enjoyed being in the sun and meeting a new puppy. She was quite upset at the potluck, because she is so frustrated. Although I know it is a good thing, it still hurts my heart to hear her cry!
Last week almost marked Abbie’s first day of “school”!! Her two-day-a-week program at the University of Hawaii began on Friday. Her favorite things were watering the plants (she grinned as soon as she saw the dirt), and singing the songs. Three hours is a long time for Abbie to work hard, and she was exhausted when she got home. But, last night when putting her to bed I told her she needed to get to sleep to be ready for school, and down came the eyelids. She really enjoys it, and I am excited to see how she will develop over the next few months! I am also happy that we are part of a training program for future therapists, so that when they graduate and are working they will be very comfortable and confident in working with kids like Abbie.
We continue to see small signs of the work that is going on inside Abbie’s body right now. I will often catch her chewing now, bringing her bottom jaw completely up to her top and clicking her teeth. She couldn’t do this a month ago. Her vision is also improving to the point where today there was confusion about which was her good side. She always sees much better to the right, but today she was consistently looking, and seeing to the left.
I apologize for being late in getting a “Post-Dallas” update written. Last week was a whirlwind of activity and readjustment. We got Abbie’s long awaited stander on Tuesday. There were some other pieces of equipment that we’d also been wanting to get for Abbie, and they all arrived on the same day! It was like Christmas in January. She looks wonderful in her stander, and we can now truly see how long her legs are – she really is a ballerina-to-be! We also got a special needs stroller for her. What a blessing! I recently purchase a carseat for her, in case we needed it during our trip. So, now we can go out and about without the clunky old wheelchair.
We did just that on Saturday, when I took her to Waimanalo Beach Park to watch RJ’s baseball game. That park, I still can’t decide if the patch of land was stolen from the sea, or given up by the mountains, and I marveled that we got to relax in such a beautiful spot. Abbie enjoyed being in the sun and meeting a new puppy. She was quite upset at the potluck, because she is so frustrated. Although I know it is a good thing, it still hurts my heart to hear her cry!
Last week almost marked Abbie’s first day of “school”!! Her two-day-a-week program at the University of Hawaii began on Friday. Her favorite things were watering the plants (she grinned as soon as she saw the dirt), and singing the songs. Three hours is a long time for Abbie to work hard, and she was exhausted when she got home. But, last night when putting her to bed I told her she needed to get to sleep to be ready for school, and down came the eyelids. She really enjoys it, and I am excited to see how she will develop over the next few months! I am also happy that we are part of a training program for future therapists, so that when they graduate and are working they will be very comfortable and confident in working with kids like Abbie.
We continue to see small signs of the work that is going on inside Abbie’s body right now. I will often catch her chewing now, bringing her bottom jaw completely up to her top and clicking her teeth. She couldn’t do this a month ago. Her vision is also improving to the point where today there was confusion about which was her good side. She always sees much better to the right, but today she was consistently looking, and seeing to the left.
I am going to post a couple more updates because I can't seem to get the pictures to go where I want them if I have more than one...you Blogger professionals...Help!!
Sunday, January 28, 2007
On the way home
(Written yesterday, 1/27)
We’re sitting in foggy San Francisco, halfway home! What an amazing two weeks we had in Dallas. After Abbie and I went for our final hyperbaric dive yesterday afternoon, she had another MEAD test done, to check her voltage.
During the first week we were thrilled to see the three circuits, or meridians, that the brain is on go up into the healing range of voltage, 50-70 millivolts. And, we were shocked to see her total body voltage go up to 43, since that’s about the ceiling, as total body voltage never gets up into healing range itself.
Ooops!! Did Abbie just hear someone say “never”? It seems that she did, because in her normal fashion, she has proven that word should never be used in connection with her. On Friday, her total body voltage was at an astounding 53!! Healing range! Dr. Tennant has never seen body voltage this high, and really never expected to….then he met Miss Abbie. It was fun to watch him react to those numbers. In addition to that Olympic-level overall voltage, 8 of her 12 circuits are also in healing range, with the other four hovering just below that threshold. Her three brain circuits all remain in the healing range, which Dr. Tennant said is also very unusual. He normally sees 2 of the 3 at one time, but never all three. Ha – another “never” Abbie gets to kick to the curb.
As I thought more about what this all means, and wondered if Ray and the boys would see big differences when we get off the plane, I realized that this truly is just like a pregnancy. When the EPT test stick turns pink, no one else can see anything different about you, and until you end up repeatedly hugging the toilet, it may not even seem like a reality. But, the process has begun, and over the coming months life begins to blossom and the evidence becomes abundantly clear that a baby is on the way. These voltage tests were our stick finally turning pink – the outward signs are just beginning, but the healing process leading to Abbie’s complete re-birth is definitely underway. And, the great part is, I can still eat anything I want!
As we were leaving the clinic on Friday Abbie was playing around with Debbie and giving her beautiful smiles. Jean’E, one of Dr. Tennant’s nurses, wanted to capture this on film, but by the time she got the camera Abbie wouldn’t smile at all. After we gave up and put the camera away, Debbie noticed a tear coming down Abbie’s cheek. She asked her if the reason she wouldn’t smile for the camera was because she didn’t want to leave all her new friends in Dallas, and Abbie immediately started clucking. I think she realizes as much as we do what a special and important trip this was, and how incredible the people are that God blessed us with in Dallas.
Abbie also developed a new love while we were in Texas…the fireplace. We were so blessed to stay in the home of some precious friends while in Dallas, and they had a gas fireplace that was on every moment Abbie was there. If she wasn’t sleeping in her bed or getting a bath, she was lying in front of the fireplace. When Debbie asked her if she wanted to take it home with her, Abbie immediately and forcefully indicated ‘YES!” Alas, it would not fit in the suitcase, so we’ll just have to make do with votive candles at home.
While we were at the clinic we found out that Dr. Tennant will only be teaching one Level 1 Biomodulator course in Honolulu, rather than two. It will be held at the Radisson Hotel in Waikiki, February 15-17. The evening of the 15th will be a free lecture about healing and voltage, while the 16th and 17th will be the training course for the Biomodulator. If you live in Hawaii and have been thinking about attending, I can’t encourage you strongly enough – for two reasons: now that we’ve spent time in Dallas I am even more convinced about the potential this technology holds for true healing, and since it will be the only course offered in Hawaii this year I would hate the opportunity to pass you by. For more information you can contact Barbara at 817-939-8188. Of course, if you can also email me with questions (varasix@aol.com)
There were many heroes in this trip, but the one that rises above them all is Debbie. She has been “on-duty” for two weeks straight, taking care of little details, big diapers, and always making sure Abbie had what she needed. There’s no way in the world we could have done this without her, and we will be forever indebted to her.
We went to bed around midnight last night, and my alarm was set for 5am, but around 4:30am something very interesting happened. I was awakened by two urgent cries from Abbie, and looked to find her rolling off her pillow, heading toward the floor. When I reached over to grab her I could feel her holding herself for all she was worth, trying to keep from falling. This is a huge step in many respects: she realized she was falling and was able to quickly alert me, and she used muscular protective responses to keep from falling. She couldn’t do these things just a short time ago. Even scary things are giving us rays of hope these days – what incredible days these are!
We’re sitting in foggy San Francisco, halfway home! What an amazing two weeks we had in Dallas. After Abbie and I went for our final hyperbaric dive yesterday afternoon, she had another MEAD test done, to check her voltage.
During the first week we were thrilled to see the three circuits, or meridians, that the brain is on go up into the healing range of voltage, 50-70 millivolts. And, we were shocked to see her total body voltage go up to 43, since that’s about the ceiling, as total body voltage never gets up into healing range itself.
Ooops!! Did Abbie just hear someone say “never”? It seems that she did, because in her normal fashion, she has proven that word should never be used in connection with her. On Friday, her total body voltage was at an astounding 53!! Healing range! Dr. Tennant has never seen body voltage this high, and really never expected to….then he met Miss Abbie. It was fun to watch him react to those numbers. In addition to that Olympic-level overall voltage, 8 of her 12 circuits are also in healing range, with the other four hovering just below that threshold. Her three brain circuits all remain in the healing range, which Dr. Tennant said is also very unusual. He normally sees 2 of the 3 at one time, but never all three. Ha – another “never” Abbie gets to kick to the curb.
As I thought more about what this all means, and wondered if Ray and the boys would see big differences when we get off the plane, I realized that this truly is just like a pregnancy. When the EPT test stick turns pink, no one else can see anything different about you, and until you end up repeatedly hugging the toilet, it may not even seem like a reality. But, the process has begun, and over the coming months life begins to blossom and the evidence becomes abundantly clear that a baby is on the way. These voltage tests were our stick finally turning pink – the outward signs are just beginning, but the healing process leading to Abbie’s complete re-birth is definitely underway. And, the great part is, I can still eat anything I want!
As we were leaving the clinic on Friday Abbie was playing around with Debbie and giving her beautiful smiles. Jean’E, one of Dr. Tennant’s nurses, wanted to capture this on film, but by the time she got the camera Abbie wouldn’t smile at all. After we gave up and put the camera away, Debbie noticed a tear coming down Abbie’s cheek. She asked her if the reason she wouldn’t smile for the camera was because she didn’t want to leave all her new friends in Dallas, and Abbie immediately started clucking. I think she realizes as much as we do what a special and important trip this was, and how incredible the people are that God blessed us with in Dallas.
Abbie also developed a new love while we were in Texas…the fireplace. We were so blessed to stay in the home of some precious friends while in Dallas, and they had a gas fireplace that was on every moment Abbie was there. If she wasn’t sleeping in her bed or getting a bath, she was lying in front of the fireplace. When Debbie asked her if she wanted to take it home with her, Abbie immediately and forcefully indicated ‘YES!” Alas, it would not fit in the suitcase, so we’ll just have to make do with votive candles at home.
While we were at the clinic we found out that Dr. Tennant will only be teaching one Level 1 Biomodulator course in Honolulu, rather than two. It will be held at the Radisson Hotel in Waikiki, February 15-17. The evening of the 15th will be a free lecture about healing and voltage, while the 16th and 17th will be the training course for the Biomodulator. If you live in Hawaii and have been thinking about attending, I can’t encourage you strongly enough – for two reasons: now that we’ve spent time in Dallas I am even more convinced about the potential this technology holds for true healing, and since it will be the only course offered in Hawaii this year I would hate the opportunity to pass you by. For more information you can contact Barbara at 817-939-8188. Of course, if you can also email me with questions (varasix@aol.com)
There were many heroes in this trip, but the one that rises above them all is Debbie. She has been “on-duty” for two weeks straight, taking care of little details, big diapers, and always making sure Abbie had what she needed. There’s no way in the world we could have done this without her, and we will be forever indebted to her.
We went to bed around midnight last night, and my alarm was set for 5am, but around 4:30am something very interesting happened. I was awakened by two urgent cries from Abbie, and looked to find her rolling off her pillow, heading toward the floor. When I reached over to grab her I could feel her holding herself for all she was worth, trying to keep from falling. This is a huge step in many respects: she realized she was falling and was able to quickly alert me, and she used muscular protective responses to keep from falling. She couldn’t do these things just a short time ago. Even scary things are giving us rays of hope these days – what incredible days these are!
Tuesday, January 23, 2007
Into the Second Week
Aloha from Texas! The weather has warmed up and we've even seen the sun recently. Abbie is doing wonderful things for us. Her face is changing every day, so much so that she very rarely drools any more, even when placed in prime drooling positions, like on her back with her head laid to the side. She is also requiring suctioning very rarely now, which makes me think she is controlling her secretions much better. The other night she slept without any oxygen, as Dr. Tennant suspected would happen soon. As her voltage rises, there is more oxgyen dissolved in her blood so that even when her voltage dips in the middle of the night, as all of ours does, she is able to maintain her sats.
Last week Dr. Collins made another observation about hormonal imbalance in Abbie, having to do with her legs. She normally keeps her thighs together, with her knees together in sort of a knock-kneed position, and then her calves are apart in a "V" shape. I always assumed this was just because of her tone, and while that is what is partially causing it, a hormonal imbalance in the underlying root. He said that if you look at anyone who walks from the knee down, sort of shuffling along, they will always have a hormonal imbalance. Dr. Tennant was not present when we had this discussion. The next day he was looking at Abbie laying on the floor and said, "You know, I am beginning to wonder of the position of her legs may be related to her hormones..." I smiled and said that Dr. Collins made the exact same remark the day before. So, I am even more hopeful that correcting her hormones will help her in a variety of ways. For those therapists out there, Dr. Collins said that hormonal imbalances greatly affect the IT band (making it tight, like Abbie's), and with correction the tension will release and the external rotation will be eliminated.
Dr. Collins spent some time working with Abbie's feet and legs while she was recieving Light treatments. In just a few minutes, using gentle movements, he had Abbie's legs and feet looking like my little Abbie's legs and feet -- the ones that used to run around my house hunting for mischief and love. The power of seeing that familiar, but long-missed sight was overwhelming.
Abbie has just recently begun to use her arms more purposefully, with extension (stretching out) movements, rather then just jerky movements where her elbows remain bent. All these things, and this is really just the launching pad. As I talked with Dr. Tennant about the meridians that are in the healing range (50-70 millivolts), I wanted to know what I had to do to keep them that high, and for how long they needed to stay there. He remarked that what he is seeing is that people get up into that range for a week or so, to begin the healing process, and then revert back to normal operating voltage as the healing progresses. In other words, the healing voltage is like the boost to get a rock rolling down a hill. Once it is going, it just needs normal momentum, or voltage, for the process to continue. Abbie has never had the momentum, or voltage, to get the healing rock moving down the hill. Now she does, as we can concretely see in her voltage tests. So, the rock is rolling, and now it's just a matter of supporting her through the process while her body does the work. She has crossed the threshold! I am still absorbing this, because it changes everything.
I mentioned in the last posting that I've been affirmed in my belief that Abbie and I are linked. This was evidenced again late last week. I wrote about her voltage going up to 42, and both of us feeling awful. In the days that followed it dropped to about 35 and we both felt much better. Then, one evening I was getting the same sensations -- room spinning, head hurting, and I mentioned to Dr. Tennant, "I would bet her voltage is up again, just based on the way I am feeling." We did a test, and sure enough, she was back up to 43. Dr. Tennant said he really never sees total body voltage higher than that. This solidifies the fact that I need to trust myself, trust my intuition and the guidance I receive about Abbie. If you see me out and about, looking pretty sick, rejoice! It means Abbie is doing lots of healing work.
This trip has been a whirlwind of blessings, and I have learned so much. It is hard, though, being away from Ray and the boys. Thanks to all of you who have brought meals, and who have prayed for them in my absence. Our family is definitely a team, and it's difficult when we are apart.
I will try to post again before we head home on Saturday morning. But, if I don't make that happen, thank you for all of your prayers and support throughout this unique part of Abbie's journey. We are blessed indeed!
Last week Dr. Collins made another observation about hormonal imbalance in Abbie, having to do with her legs. She normally keeps her thighs together, with her knees together in sort of a knock-kneed position, and then her calves are apart in a "V" shape. I always assumed this was just because of her tone, and while that is what is partially causing it, a hormonal imbalance in the underlying root. He said that if you look at anyone who walks from the knee down, sort of shuffling along, they will always have a hormonal imbalance. Dr. Tennant was not present when we had this discussion. The next day he was looking at Abbie laying on the floor and said, "You know, I am beginning to wonder of the position of her legs may be related to her hormones..." I smiled and said that Dr. Collins made the exact same remark the day before. So, I am even more hopeful that correcting her hormones will help her in a variety of ways. For those therapists out there, Dr. Collins said that hormonal imbalances greatly affect the IT band (making it tight, like Abbie's), and with correction the tension will release and the external rotation will be eliminated.
Dr. Collins spent some time working with Abbie's feet and legs while she was recieving Light treatments. In just a few minutes, using gentle movements, he had Abbie's legs and feet looking like my little Abbie's legs and feet -- the ones that used to run around my house hunting for mischief and love. The power of seeing that familiar, but long-missed sight was overwhelming.
Abbie has just recently begun to use her arms more purposefully, with extension (stretching out) movements, rather then just jerky movements where her elbows remain bent. All these things, and this is really just the launching pad. As I talked with Dr. Tennant about the meridians that are in the healing range (50-70 millivolts), I wanted to know what I had to do to keep them that high, and for how long they needed to stay there. He remarked that what he is seeing is that people get up into that range for a week or so, to begin the healing process, and then revert back to normal operating voltage as the healing progresses. In other words, the healing voltage is like the boost to get a rock rolling down a hill. Once it is going, it just needs normal momentum, or voltage, for the process to continue. Abbie has never had the momentum, or voltage, to get the healing rock moving down the hill. Now she does, as we can concretely see in her voltage tests. So, the rock is rolling, and now it's just a matter of supporting her through the process while her body does the work. She has crossed the threshold! I am still absorbing this, because it changes everything.
I mentioned in the last posting that I've been affirmed in my belief that Abbie and I are linked. This was evidenced again late last week. I wrote about her voltage going up to 42, and both of us feeling awful. In the days that followed it dropped to about 35 and we both felt much better. Then, one evening I was getting the same sensations -- room spinning, head hurting, and I mentioned to Dr. Tennant, "I would bet her voltage is up again, just based on the way I am feeling." We did a test, and sure enough, she was back up to 43. Dr. Tennant said he really never sees total body voltage higher than that. This solidifies the fact that I need to trust myself, trust my intuition and the guidance I receive about Abbie. If you see me out and about, looking pretty sick, rejoice! It means Abbie is doing lots of healing work.
This trip has been a whirlwind of blessings, and I have learned so much. It is hard, though, being away from Ray and the boys. Thanks to all of you who have brought meals, and who have prayed for them in my absence. Our family is definitely a team, and it's difficult when we are apart.
I will try to post again before we head home on Saturday morning. But, if I don't make that happen, thank you for all of your prayers and support throughout this unique part of Abbie's journey. We are blessed indeed!
Thursday, January 18, 2007
We're Here!
Sorry for the overdue update, I've not been able to keep a connection long enough to post. So much to tell...Our trip was a definate adventure, but I'll get to that later. I want to start off with all the great things that have happened in just the first two days here.
Abbie's recovery is all about voltage - remembering that normal bodies function at around 22 milivolts. A couple weeks ago we measured her at home and she was up to 11, an improvement over the 2 she'd been at two weeks before. Well, we arrived in Dallas on Monday afternoon, and both Dr. Collins and Dr. Tennant worked on Abbie quite a bit Monday evening. We went to the clinic Tuesday morning, and when Abbie's voltages were checked we got two pieces of very good news. First, her overall body voltage was up to 30! This was an amazing jump. The test that gave us that number also measures 12 specific meridians in the body. You can think of meridians like copper wiring in your house, they wire certain organ systems together just like your wire connects several appliances. Dr. Tennant brought in the test results with 3 meridians circled. These three meridians had voltages that reached into the healing range of 50-70 millivolts. I was happy about that, but didn't grasp the import until he said, "These are the three meridians that the brain is on. There is certainly healing going on in her brain right now." I was stunned. The hope so long deferred is becoming a reality!
Abbie and I then went for our first hyperbaric dive in the clinic. I enjoyed the soft-sided chamber because it allowed us to lay down and snuggle together, and because the oxygen was delivered through a cannula, I didn't have to struggle to hold a mask on her for an hour. Coming to Dallas I felt that HBOT would be one of the primary benefits, and was already trying to figure out a way to continue once we return to Honolulu. As we talked that evening, however, Dr. Tennant explained that if we can keep Abbie's overall body voltage in the normal range (above 20 millivolts) she won't need HBOT. Wow! That would be a load off my shoulders -- one more blessing.
I guess I should explain who Dr. Collins is. He and Dr. Tennant have been working together for the past few years in developing a specialized light diode, which is what they are using to treat people in the clinic. Like Dr. Tennant, Dr. Collins is extremely brilliant and it has been our good fortune to be here concurrent to his visit (he lives in Columbia, SC). He has been very helpful in giving us concrete steps to begin Abbie's journey back. For example, the first night he saw her he noted that she didn't have much of a sucking reflex. He said that we had to get that back before we tried to move further down the road -- Abbie's needs to meet the developmental milestones in order again. So we started working hard on that while she was receiving Light treatments, and by the next day she was sucking hard on my finger. His insistence on the importance of the milestones makes me think that we will go back to the neurodevelopmentalist, whose specialty is creating programs to meet milestones in order.
Dr. Collins also made a couple interesting observations. Just last week Matthew asked me why Abbie's face looks so different now. I told him it is because her muscles aren't working quite right yet, so it makes her face look chubby. Dr. Collins thinks her face looks "steriodal" -- puffy like someone taking steriods. This is due to her having excess cortisol in her system because her body is still in "alarm mode". He noted this on his initial examination of her -- her body still is splayed out, arms to the side, back a little arched. Our goal is to get her out of alarm mode and back into a fetal position, so she can relax and heal. We spent yesterday collecting saliva to send off for a hormone test so we can see exactly where she's at. Dr. Tennant has found recently that dealing with hormones is critical to recovery.
Yesterday we awoke to SNOW! I couldn't believe it! We also awoke to find that Abbie and I felt terrible. She was subdued and somewhat cranky towards dinner time, while I had a horrible headache and felt like the room was spinning. We measured her voltage after dinner and found it to be an incredible 42! Dr. Tennant said that explained why she felt so bad -- someone with that much voltage is bound to have a headache. I asked him how we could support her through this and he told me that when he has adult patients hit levels like this and they need to be functional for work he actually has them drink a caffeine-free Coke to bring the voltage down a bit. So, it seems that Miss Abbie is taking off like a rocket ship, which is exactly how she arrived in this world the first time, so it seems fitting. Dr. Collins explained that I feel so awful for two reasons: I have been treating Abbie so I get enough of the frequencies to stimulate my body to begin dumping toxins etc, but I don't get the full range to help my body do this work. Also, I am very tied to Abbie, and her journey affects me physically. He has found that in every child he's treated, there is always one parent who is physically tied to the child and helps/hinders/experiences the process with the child. As I thought about it later I realized that I've always known this, and recalled writing about how Abbie and I were like E.T. and Elliot, whose heart rhythms were in synch at the end of the movie.
I have learned so much more from getting to spend time with Drs. Tennant and Collins, but I feel like I should stop rambling for now, and tell you more in the next update.
Our trip here was an adventure. We flew from Honolulu to Seattle, where we were met at the gate by my long-time friend Wendy and her friend Stan. His "United Crew" credentials had allowed them past security as standby travelers. What an effort to make for a ten minute visit at 5am!! We then took off for Denver. Abbie did very well on both flights, although I am so glad we had coordinated oxgyen. She required 4 liters to Seattle and 3 liters to Denver. As we were landing in Denver, I thought "This trip is going so well..." Ohhh, the danger of thinking that thought!
We waited on the plane for the wheelchair to be brought up. It finally arrived -- in pieces. Despite being covered with "Do NOT Disassemble signs", the ground crew in Seattle had done just so. Fearing that may happen at some point, we had also gate-checked a stroller. Unfortunately, it had been lost. The captain, seeing our predicament, went down to check the belly of the plane himself in the snowing, 3 degree weather. No luck. I told him we would have to let it catch up with us because we had a tight connection to DFW. He got a funny look on his face and picked up the jetway phone. After a moment he quietly replaced the receiver and slowly turned to me, hating to say these words, "I'm sorry, they just closed DFW for the day because of ice." So, we had a broken wheelchair, no stroller, and no flight. Wow.
We ended up at an empty gate area across the way and I set off to find how to get a new flight booked. I found the end of a 400 person line, and realized I couldn't leave Abbie and Debbie that long. So, I returned to them, and figured that I could at least start trying to coordinate oxygen, because I'd learned it sometimes requires a 24-hour notice. I called the United Medical Desk to begin this process, and the sweet woman on the other end of our line saved the day. She asked "Is no one from United there helping you??" Ummmmm - no. She then told me about the "Special Services Room" for handicapped passengers. I found a skycap to direct us there, and behind a silver Star-Trek door lay an oasis. Power outlets for Abbie's pulse-oximeter and suction machine, and even better, an agent to rebook our flight. An angel named Jan spent two hours on the phone and got us booked in first class seats for the next day. She also gave us $70 worth of meal vouchers. I spied a twin mattress leaned up against a wall and asked we could use it. When they said "OK" we began to set up camp. We ended up just staying overnight at the airport rather than trying to find wheelchair transportation (impossible) and claiming all our checked baggage. Abbie did wonderfully, and it was not bad at all. Debbie was a real hero in this whole ordeal, basically going with no sleep for three days. But, in the end we got the wheelchair back together, got to Dallas, and are pinching ourselves that we are actually here. Miracles happen, and Abbie is one of them!
Will keep you posted as we go. God has been so good to us, and has sustained us throughout Abbie's journey. But, this year feels like the gates of Heaven opening and blessings unnumbered streaming down upon us.
Abbie's recovery is all about voltage - remembering that normal bodies function at around 22 milivolts. A couple weeks ago we measured her at home and she was up to 11, an improvement over the 2 she'd been at two weeks before. Well, we arrived in Dallas on Monday afternoon, and both Dr. Collins and Dr. Tennant worked on Abbie quite a bit Monday evening. We went to the clinic Tuesday morning, and when Abbie's voltages were checked we got two pieces of very good news. First, her overall body voltage was up to 30! This was an amazing jump. The test that gave us that number also measures 12 specific meridians in the body. You can think of meridians like copper wiring in your house, they wire certain organ systems together just like your wire connects several appliances. Dr. Tennant brought in the test results with 3 meridians circled. These three meridians had voltages that reached into the healing range of 50-70 millivolts. I was happy about that, but didn't grasp the import until he said, "These are the three meridians that the brain is on. There is certainly healing going on in her brain right now." I was stunned. The hope so long deferred is becoming a reality!
Abbie and I then went for our first hyperbaric dive in the clinic. I enjoyed the soft-sided chamber because it allowed us to lay down and snuggle together, and because the oxygen was delivered through a cannula, I didn't have to struggle to hold a mask on her for an hour. Coming to Dallas I felt that HBOT would be one of the primary benefits, and was already trying to figure out a way to continue once we return to Honolulu. As we talked that evening, however, Dr. Tennant explained that if we can keep Abbie's overall body voltage in the normal range (above 20 millivolts) she won't need HBOT. Wow! That would be a load off my shoulders -- one more blessing.
I guess I should explain who Dr. Collins is. He and Dr. Tennant have been working together for the past few years in developing a specialized light diode, which is what they are using to treat people in the clinic. Like Dr. Tennant, Dr. Collins is extremely brilliant and it has been our good fortune to be here concurrent to his visit (he lives in Columbia, SC). He has been very helpful in giving us concrete steps to begin Abbie's journey back. For example, the first night he saw her he noted that she didn't have much of a sucking reflex. He said that we had to get that back before we tried to move further down the road -- Abbie's needs to meet the developmental milestones in order again. So we started working hard on that while she was receiving Light treatments, and by the next day she was sucking hard on my finger. His insistence on the importance of the milestones makes me think that we will go back to the neurodevelopmentalist, whose specialty is creating programs to meet milestones in order.
Dr. Collins also made a couple interesting observations. Just last week Matthew asked me why Abbie's face looks so different now. I told him it is because her muscles aren't working quite right yet, so it makes her face look chubby. Dr. Collins thinks her face looks "steriodal" -- puffy like someone taking steriods. This is due to her having excess cortisol in her system because her body is still in "alarm mode". He noted this on his initial examination of her -- her body still is splayed out, arms to the side, back a little arched. Our goal is to get her out of alarm mode and back into a fetal position, so she can relax and heal. We spent yesterday collecting saliva to send off for a hormone test so we can see exactly where she's at. Dr. Tennant has found recently that dealing with hormones is critical to recovery.
Yesterday we awoke to SNOW! I couldn't believe it! We also awoke to find that Abbie and I felt terrible. She was subdued and somewhat cranky towards dinner time, while I had a horrible headache and felt like the room was spinning. We measured her voltage after dinner and found it to be an incredible 42! Dr. Tennant said that explained why she felt so bad -- someone with that much voltage is bound to have a headache. I asked him how we could support her through this and he told me that when he has adult patients hit levels like this and they need to be functional for work he actually has them drink a caffeine-free Coke to bring the voltage down a bit. So, it seems that Miss Abbie is taking off like a rocket ship, which is exactly how she arrived in this world the first time, so it seems fitting. Dr. Collins explained that I feel so awful for two reasons: I have been treating Abbie so I get enough of the frequencies to stimulate my body to begin dumping toxins etc, but I don't get the full range to help my body do this work. Also, I am very tied to Abbie, and her journey affects me physically. He has found that in every child he's treated, there is always one parent who is physically tied to the child and helps/hinders/experiences the process with the child. As I thought about it later I realized that I've always known this, and recalled writing about how Abbie and I were like E.T. and Elliot, whose heart rhythms were in synch at the end of the movie.
I have learned so much more from getting to spend time with Drs. Tennant and Collins, but I feel like I should stop rambling for now, and tell you more in the next update.
Our trip here was an adventure. We flew from Honolulu to Seattle, where we were met at the gate by my long-time friend Wendy and her friend Stan. His "United Crew" credentials had allowed them past security as standby travelers. What an effort to make for a ten minute visit at 5am!! We then took off for Denver. Abbie did very well on both flights, although I am so glad we had coordinated oxgyen. She required 4 liters to Seattle and 3 liters to Denver. As we were landing in Denver, I thought "This trip is going so well..." Ohhh, the danger of thinking that thought!
We waited on the plane for the wheelchair to be brought up. It finally arrived -- in pieces. Despite being covered with "Do NOT Disassemble signs", the ground crew in Seattle had done just so. Fearing that may happen at some point, we had also gate-checked a stroller. Unfortunately, it had been lost. The captain, seeing our predicament, went down to check the belly of the plane himself in the snowing, 3 degree weather. No luck. I told him we would have to let it catch up with us because we had a tight connection to DFW. He got a funny look on his face and picked up the jetway phone. After a moment he quietly replaced the receiver and slowly turned to me, hating to say these words, "I'm sorry, they just closed DFW for the day because of ice." So, we had a broken wheelchair, no stroller, and no flight. Wow.
We ended up at an empty gate area across the way and I set off to find how to get a new flight booked. I found the end of a 400 person line, and realized I couldn't leave Abbie and Debbie that long. So, I returned to them, and figured that I could at least start trying to coordinate oxygen, because I'd learned it sometimes requires a 24-hour notice. I called the United Medical Desk to begin this process, and the sweet woman on the other end of our line saved the day. She asked "Is no one from United there helping you??" Ummmmm - no. She then told me about the "Special Services Room" for handicapped passengers. I found a skycap to direct us there, and behind a silver Star-Trek door lay an oasis. Power outlets for Abbie's pulse-oximeter and suction machine, and even better, an agent to rebook our flight. An angel named Jan spent two hours on the phone and got us booked in first class seats for the next day. She also gave us $70 worth of meal vouchers. I spied a twin mattress leaned up against a wall and asked we could use it. When they said "OK" we began to set up camp. We ended up just staying overnight at the airport rather than trying to find wheelchair transportation (impossible) and claiming all our checked baggage. Abbie did wonderfully, and it was not bad at all. Debbie was a real hero in this whole ordeal, basically going with no sleep for three days. But, in the end we got the wheelchair back together, got to Dallas, and are pinching ourselves that we are actually here. Miracles happen, and Abbie is one of them!
Will keep you posted as we go. God has been so good to us, and has sustained us throughout Abbie's journey. But, this year feels like the gates of Heaven opening and blessings unnumbered streaming down upon us.
Saturday, January 13, 2007
Please Pray for Our Trip
I spoke with Dr. Tennant a couple of hours ago, and I'm glad I 'd just checked the weather forecast for Dallas so that what he said didn't completely throw me for a loop. Dallas is in the midst of an ice storm that is predicted to last through Monday. I am concerned about the drive from the airport to our hotel, and even more curious about how weather that cold is going to affect Abbie. And, those worries are all predicated on the assumption that we actually make it to DFW tomorrow afternoon.
We are alse scheduled to go through Denver, and with with images of stranded travelers at that airport fresh in my mind, there is a temptation to delay our travel plans. However, coordinating oxgyen for each of our three legs (to Seattle, then Denver to Dallas) takes more lead time than we now have so we are going to push ahead and stick to our current itinerary. I think God is reiterating that not only did he tell me "Go" last Sunday, but he also told me "Trust".
When I talked to Dr. Tennant he shared with me that many other children will be in his clinic next week. I am excited to meet families in person whom I've only corresponded with, and look forward to seeing what will happen with those children while in Dallas.
We're pretty much all packed, and we don't even leave for the airport for another five hours, so I am pretty impressed with myself at this point. Actually, Debbie did most of the packing for Abbie so that I didn' t have a complete mental meltdown. Please, if you would, raise up extra prayers for us tonight and tomorrow. I will update from the other end as soon as we get there.
We are alse scheduled to go through Denver, and with with images of stranded travelers at that airport fresh in my mind, there is a temptation to delay our travel plans. However, coordinating oxgyen for each of our three legs (to Seattle, then Denver to Dallas) takes more lead time than we now have so we are going to push ahead and stick to our current itinerary. I think God is reiterating that not only did he tell me "Go" last Sunday, but he also told me "Trust".
When I talked to Dr. Tennant he shared with me that many other children will be in his clinic next week. I am excited to meet families in person whom I've only corresponded with, and look forward to seeing what will happen with those children while in Dallas.
We're pretty much all packed, and we don't even leave for the airport for another five hours, so I am pretty impressed with myself at this point. Actually, Debbie did most of the packing for Abbie so that I didn' t have a complete mental meltdown. Please, if you would, raise up extra prayers for us tonight and tomorrow. I will update from the other end as soon as we get there.
Tuesday, January 09, 2007
Nick's gift
Nick looks on in anticipation as Abbie opens her gift from him.
I couldn't write this update until I had pictures to do it justice. Nick is Debbie's great-nephew and he spends every Friday night with her. He and Abbie have become quite good pen pals. They met in person last summer when he brought over a Build-a-Bear (that is actually a dog) that he made for Abbie. A few months ago he decided that he wanted to make Abbie a quilt for Christmas. So, he picked out fabric, came up with a pattern, cut it out and learned how to sew. Each weekend he and Debbie would work on "the project." Did I mention he is six?? At Christmas time he came over to present the fruit of all that labor to Abbie. I had tears in my eyes looking at how much love and thoughtfulness had gone into the quilt. He had picked a bright yellow ladybug fabric, since we've called her "Ladybug" since she was a baby. Nick was quite proud of the fabric that was a comic strip about the Kool-Aid man. But the best square of all is the one pictured above, his signature block. Have you ever seen anything more precious? We take this quilt everywhere with us, since it literally wraps her in love.
Catching up on good things
So many things have been happening lately that I've not really written about the small, sweet things that are filling our days. One is the frequent visits by the Tooth Fairy. This picture was taken on Christmas, and the gap in front widened considerably the next day when Abbie lost her other front tooth. As you can probably see, she already has a permanent tooth coming in, and it's just as enormous as I thought it would be. Is it because I am from Oregon that I and all my kids have front teeth that resemble a beaver's? We will probably have to do the same thing on the top that we did on the bottom, having the other two front baby teeth extracted to make room for the two front permanent teeth. And, you gotta love that dimple! She loved Christmas this year, and that made it so much better for all of us. As I was tucking a wide-awake Abbie into bed on Christmas Eve, I told her, "You know, Santa won't come until you are asleep!" Her eyes fluttered for a moment and then shut tight. For a selfish moment it made me think about telling her Santa comes EVERY night for little girls who go right to sleep.
This past Sunday she was able to go to Sunday School again, and I knew she had a great time by all the goodies that came home with us. Every girl in her little group just had to get something from the goodie box for Abbie. She held on to the little fish keychain all day, and when I went to put her to bed I found a bookmark folded into her blanket. But, until today I didn't know how well it had gone! I talked to my friend, Kathleen, who is Abbie's "Sunday School Auntie" -- her first words were , "I can't believe the changes in Abbie!" She went on to tell me how much Abbie used her voice, which matched what we've been seeing, or rather, hearing. At one point she said something to Abbie and immediately Abbie turned her head all the way around to look at Kathleen in the face. RJ came out of the service to blow his nose, and when Kathleen told Abbie that RJ was out there, Abbie started making all kinds of noise. At the end of the session they were taking prayer requests from her little group of kindergarteners and first graders. Kathleen had previously told them that Abbie would really like to get up and play and talk with with them, so it was very sweet when one of the little girls asked that they pray that Abbie could "get out of her wheelchair and play with us." When Kathleen asked Abbie if that is what she wanted to do, Abbie vocalized immediately. I guess the looks on the faces of the girls communicated their happy surprise and their realization that Abbie really does understand what is going on and really wants to get up and play with them.
Monday, January 08, 2007
Big D
An amazing window of opportunity swung open this weekend, and we are going to jet through it, courtesy of United Airlines. This Saturday, Debbie, Abbie and I are going to fly to Dallas to spend two weeks at Dr. Tennant's clinic. This has all materialized so quickly, with the help of some very special angels, that my head is spinning. Of course, my dizziness could be due to juggling two phones and a computer trying to coordinate all the details of the trip.
I have wanted to take Abbie to Dallas for quite a while, but this trip snuck up on us, and I don't know that I've fully absorbed that we are actually getting to go so soon! I look forward to seeing what a visit to Dr. Tennant's clinic will do for Abbie, and I am anxious to learn even more from him.
Although this trip is something we'd planned to do at some time, we still had to really think through the possiblity, to determine if this was the right time for our family. Not as easy a decision as it would seem. The idea first surfaced on Saturday afternoon, and I wrestled with it all night. I went to church on Sunday hoping for confirmation one way or the other. As we sang I got two words, "Go" and "Trust". I was happy to hear the first, and glad to hear the second. There is always so much more that we want to do for Abbie than we can realistically do, and "trust" told me that this trip is the right decision, and God will provide other things down the road.
So, you'll be glad to know that our hotel room has high-speed internet which will allow me to keep everyone updated during the trip. We'll arrive in Dallas this Sunday afternoon, and will visit the clinic for the first time on Monday afternoon. We've done inter-island flights with Abbie, but have not taken her to the mainland since she was injured. I covet your prayers for a smooth trip for her, that she would be comfortable and healthy. We have coordinated in-flight oxygen, but hope she doesn't need it (although at $100 per leg, I may use it if she doesn't!!)
She had a wonderful day in PT/OT today. People with Cortical Vision Impairment see best when that is all they have to concentrate on, when they are not having to manage head control, posture, etc. Well, today Miss Abbie sat on a bench with just a little hip support and used her vision to make fashion choices for the dress-up doll. It was incredible to see her sit up so strong and tall and still be able to use her eyes -- a big step!
Still so much to do to get ready, so I have to go for now. All I can say is that God hears the prayers of our hearts, and so often he sends people to help those prayers come to fruition. What a place of rest and comfort!
I have wanted to take Abbie to Dallas for quite a while, but this trip snuck up on us, and I don't know that I've fully absorbed that we are actually getting to go so soon! I look forward to seeing what a visit to Dr. Tennant's clinic will do for Abbie, and I am anxious to learn even more from him.
Although this trip is something we'd planned to do at some time, we still had to really think through the possiblity, to determine if this was the right time for our family. Not as easy a decision as it would seem. The idea first surfaced on Saturday afternoon, and I wrestled with it all night. I went to church on Sunday hoping for confirmation one way or the other. As we sang I got two words, "Go" and "Trust". I was happy to hear the first, and glad to hear the second. There is always so much more that we want to do for Abbie than we can realistically do, and "trust" told me that this trip is the right decision, and God will provide other things down the road.
So, you'll be glad to know that our hotel room has high-speed internet which will allow me to keep everyone updated during the trip. We'll arrive in Dallas this Sunday afternoon, and will visit the clinic for the first time on Monday afternoon. We've done inter-island flights with Abbie, but have not taken her to the mainland since she was injured. I covet your prayers for a smooth trip for her, that she would be comfortable and healthy. We have coordinated in-flight oxygen, but hope she doesn't need it (although at $100 per leg, I may use it if she doesn't!!)
She had a wonderful day in PT/OT today. People with Cortical Vision Impairment see best when that is all they have to concentrate on, when they are not having to manage head control, posture, etc. Well, today Miss Abbie sat on a bench with just a little hip support and used her vision to make fashion choices for the dress-up doll. It was incredible to see her sit up so strong and tall and still be able to use her eyes -- a big step!
Still so much to do to get ready, so I have to go for now. All I can say is that God hears the prayers of our hearts, and so often he sends people to help those prayers come to fruition. What a place of rest and comfort!
Friday, January 05, 2007
New steps in a New Year
Sometimes the days run together and it seems like nothing much is happening until I sit down and try to write about it. This blog is a personal blessing because as I distill the past week into a few lines of words, I realize things are happening and I need to give Abbie credit and celebrate each step.
The highlight of the last several days was Abbie saying RJ's name. I had her up on my bed, and he walked in to join us. She said what I thought was his name, but I never believe something the first time. So, I asked her to say it again, and she did, much to RJ's delight. With raised eyebrows and a huge grin he asked her to say his name, and she did it again! Three times in a row left me no room for doubt, and much cause for joy!
I noted lately that it's getting even easier to elicit smiles verbally. For example, when I asked her if she wanted a bath she smiled broadly, dimple and all. Her smile is also changing. Debbie first noticed it, but now I've seen it too - the dimple on the left side of her face. I've not seen it for over 2 1/2 years, because that side of her face has been too weak to smile strongly. I recalled the first time I saw her right-side dimple again, in response to desperate prayers Ray and I lifted while she was in rehab. It was the "sign" that we asked for to assure us she was in there and coming back to us. For that reason, seeing the dimple on the other side seems so much more significant to me than just a stronger smile.
We had her standing up during therapy yesterday using a tilt table. For the first time she stood with her ankles flexed past 90 degrees. This is a big step and will make it possible for her to stand up from a sitting position as well as making it easier to walk. At the moment when I am trying to load her back in her wheelchair, gather all her stuff and get home therapy "firsts" sometimes don't sink in. It wasn't until much later that I realized this is a step we've been working towards for a long time and I need to celebrate the victory, no matter how incremental it is.
This is a pretty business-like update, and there is much more on my heart, but at the end of the week I find it hard to summon the emotional strength to communicate it. Perhaps on quiet Sunday afternoon I can dig a little deeper.
Praying that your new year is off to as great a start as Abbie's!
The highlight of the last several days was Abbie saying RJ's name. I had her up on my bed, and he walked in to join us. She said what I thought was his name, but I never believe something the first time. So, I asked her to say it again, and she did, much to RJ's delight. With raised eyebrows and a huge grin he asked her to say his name, and she did it again! Three times in a row left me no room for doubt, and much cause for joy!
I noted lately that it's getting even easier to elicit smiles verbally. For example, when I asked her if she wanted a bath she smiled broadly, dimple and all. Her smile is also changing. Debbie first noticed it, but now I've seen it too - the dimple on the left side of her face. I've not seen it for over 2 1/2 years, because that side of her face has been too weak to smile strongly. I recalled the first time I saw her right-side dimple again, in response to desperate prayers Ray and I lifted while she was in rehab. It was the "sign" that we asked for to assure us she was in there and coming back to us. For that reason, seeing the dimple on the other side seems so much more significant to me than just a stronger smile.
We had her standing up during therapy yesterday using a tilt table. For the first time she stood with her ankles flexed past 90 degrees. This is a big step and will make it possible for her to stand up from a sitting position as well as making it easier to walk. At the moment when I am trying to load her back in her wheelchair, gather all her stuff and get home therapy "firsts" sometimes don't sink in. It wasn't until much later that I realized this is a step we've been working towards for a long time and I need to celebrate the victory, no matter how incremental it is.
This is a pretty business-like update, and there is much more on my heart, but at the end of the week I find it hard to summon the emotional strength to communicate it. Perhaps on quiet Sunday afternoon I can dig a little deeper.
Praying that your new year is off to as great a start as Abbie's!
Thursday, December 28, 2006
John 1:5
Christmas flew by in a joyous blur, but there were some profound moments and lasting memories.
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!
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
A New Stage?
Something funny happened this afternoon that is prompting me to write the second update of the day. Actually, it began last Friday when I attempted to take Abbie and the boys to the movies. The boys wanted to see "Eragon" which I knew would be too loud for Abbie, so I decided to see "The Nativity Story", figuring that if I did have to step out with Abbie for a few minutes, I was at least familiar with the storyline and could jump back in mid-movie and not be lost. Well...it's a good thing I already know the story, and I'm sure the movie was great, but we only saw 1 minute of it.
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!
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!
The Beginnings of Hope
I apologize for the lack of updates lately, Ray was in Orlando last week which made it an interesting and hectic time around here. I was a little nervous about how I was going to get Abbie and four sleepy brothers up, dressed, and in the van by 6:45am each morning to get the boys to school. It ended up being quite a blessing! Abbie really enjoyed the early morning activity, and relished taking the boys to school.
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!
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
A Golden Billboard
With so many holiday events this month, I usually pick and choose which ones I will attend with Ray. Earlier this week he mentioned that Kapiolani, the Women's and Children's Hospital, would be hosting a tree-trimming ceremony tonight. I was confused since the hospital had a tree-lighting ceremony last week, and I was about to claim "overkill!!" when he explained why there were two ceremonies, and what made this one special.
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.
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
Marathon Update, Round Two
The flu has kept me from the computer for the last week. I have not been this sick since before Abbie was even a blip on an ultrasound screen. But, the worst is definately past and it's time to catch up.
Thursday, 11/23:
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.
Friday, 11/24:
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.
Saturday, 11/25
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!
Sunday 11/26:
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.
Thursday, 11/30
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!
Friday, 12/1
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!
Saturday, 12/2
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, 11/23:
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.
Friday, 11/24:
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.
Saturday, 11/25
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!
Sunday 11/26:
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.
Thursday, 11/30
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!
Friday, 12/1
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!
Saturday, 12/2
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!
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