My laptop is funtional again, allowing us to do a much overdue check on Abbie's voltage today. I repeated the test three time to confirm the results because I was so surprised. Her overall voltage is at 29!!! Much more than I had hoped to see, and proof that the new diet's effects are kicking in just when they were supposed to.
This increase corresponds very well with changes we are seeing in Abbie. I had her sitting on a ball today and no matter which direction I moved her or how much I bounced, she kept her head and trunk solidly in line. We have also noted that the spine we were getting concerned about has straightened out nicely...no curvature to be seen.
It also deepened my suspicion on another front. Last night she was having a tough time breathing at bedtime. It took two liters of O2 to keep her at 95, but her chest sounded fine. I was up with her pretty much the whole night, and it really seemed that instead of being congested, she was actually too dry. Repetitive shots of nasal saline really helped, and by morning she was off oxygen, satting at 98. I know that raw milk can aid in resolving allergies, and I wondered if that might be what is going on with Abbie. I gave her Zyrtec with her last feed, and last night, within an hour or two of that dose, her breathing trouble started. It may be that she doesn't need it anymore, and giving it to her anyway is drying her out too much. The excellent voltage readings reinforce my thoughts that perhaps it is time to stop Zyrtec and see what happens.
Step by step, bit by bit...I told her we've got 10 months to get her ready for the promised purple two-wheeler.
Wednesday, October 18, 2006
Tuesday, October 17, 2006
All is Well
We were shaken out of bed on Sunday morning to begin a day that turned out much differently than we had planned. I was living in Santa Clara, CA during the big 1989 quake, and when I felt the ground move on Sunday I knew it was also a big one.
Fortunately, we were far enough away from the epicenter that nothing actually fell down or broke. The one house you probably saw over and over again with the destroyed chimney belongs to the family of one of Kyle's classmates, but other than that house Oahu was pretty much spared from direct earthquake damage. The power was a whole different story...
As the parent of a medically fragile child it quickly becomes apparent how dependent we are on electricity. The oxygen concentrator, the pulse-oximeter, the suction machine...things we depend on every day were suddenly completely out of commission (the concentrator) or on very limited battery power (pulse-ox and suction). I quickly made Abbie's food for the day and packed it in a cooler with ice packs. We then made the freezer and fridge totally off limits. Well, first we got out the left-over pizza and heated it up on the barbeque for breakfast. I wanted to do whatever I could to save the 5 gallons of raw milk we'd just received for Abbie.
She has been on and off oxygen since we got back from Disneyland, requiring lots of suctioning some days and not so much on others. Praise God that she chose to have a very good breathing day on Sunday. We were able to just spot check her stats with the pulse-ox to save the battery, and didn't have to use the rest of the limited tank oxygen we had on hand. As the day wore on her biggest challenge was the heat. Thankfully it was an overcast day, but the humidity was around 85%. We gave her extra water, cooled her with washcloths and she hung in there like a trooper.
Her brothers rediscovered Monopoly and playing outside. They enjoyed themselves so much they said it 'd be great to have power for the fridge and stove but that we didn't really need the TV and computer. Amen to that!
Ray's day was filled with running between the three Oahu hospitals he oversees. Obviously it is a challenge to maintain patient care and services with limited generator power, but he is blessed to have many outstanding people working for him -- they put in a herculean effort on Sunday, and things went as smoothly as could be hoped for. It made it a little tough on me to deal with the boys and Abbie by myself, but there is always a silver lining. At one point in the afternoon he brought home some hot food from the hospital cafeteria. This pre-empted the major challenge with four boys, no power and an off-limits fridge...their hunger!
We had just gotten everything all set for the night as the last of the light was disappearing outside, when in an instant we were back into the 21st century with lights and A/C at our service. Finally we could see the news and find out what was going on around the state. We are so fortunate that a quake of this magnitude didn't result in any deaths or serious injuries.
Power was on to most of Oahu by midnight, although the boys held out hope that Manoa was still dark so that school would be closed on Monday...no such luck. Life is back to normal now. Abbie had a great PT/OT session on Monday, and did HBOT today. On the way home, past the port, Debbie asked her where the boats were. Without any hesitation she turned her head to look out the window at them. Things like that make me smile!
Her burn is all closed now, so we are able to put her back in the tub, to her great satisfaction. We have committed to working in her neurodevelopmental program during the day, and she seems to like it (most of the time).
I owe so many people emails since 3 of the boys were home the last two weeks, and RJ has been sick so far this week...I will get them out as soon as I can, just know that I am thinking of you!
Fortunately, we were far enough away from the epicenter that nothing actually fell down or broke. The one house you probably saw over and over again with the destroyed chimney belongs to the family of one of Kyle's classmates, but other than that house Oahu was pretty much spared from direct earthquake damage. The power was a whole different story...
As the parent of a medically fragile child it quickly becomes apparent how dependent we are on electricity. The oxygen concentrator, the pulse-oximeter, the suction machine...things we depend on every day were suddenly completely out of commission (the concentrator) or on very limited battery power (pulse-ox and suction). I quickly made Abbie's food for the day and packed it in a cooler with ice packs. We then made the freezer and fridge totally off limits. Well, first we got out the left-over pizza and heated it up on the barbeque for breakfast. I wanted to do whatever I could to save the 5 gallons of raw milk we'd just received for Abbie.
She has been on and off oxygen since we got back from Disneyland, requiring lots of suctioning some days and not so much on others. Praise God that she chose to have a very good breathing day on Sunday. We were able to just spot check her stats with the pulse-ox to save the battery, and didn't have to use the rest of the limited tank oxygen we had on hand. As the day wore on her biggest challenge was the heat. Thankfully it was an overcast day, but the humidity was around 85%. We gave her extra water, cooled her with washcloths and she hung in there like a trooper.
Her brothers rediscovered Monopoly and playing outside. They enjoyed themselves so much they said it 'd be great to have power for the fridge and stove but that we didn't really need the TV and computer. Amen to that!
Ray's day was filled with running between the three Oahu hospitals he oversees. Obviously it is a challenge to maintain patient care and services with limited generator power, but he is blessed to have many outstanding people working for him -- they put in a herculean effort on Sunday, and things went as smoothly as could be hoped for. It made it a little tough on me to deal with the boys and Abbie by myself, but there is always a silver lining. At one point in the afternoon he brought home some hot food from the hospital cafeteria. This pre-empted the major challenge with four boys, no power and an off-limits fridge...their hunger!
We had just gotten everything all set for the night as the last of the light was disappearing outside, when in an instant we were back into the 21st century with lights and A/C at our service. Finally we could see the news and find out what was going on around the state. We are so fortunate that a quake of this magnitude didn't result in any deaths or serious injuries.
Power was on to most of Oahu by midnight, although the boys held out hope that Manoa was still dark so that school would be closed on Monday...no such luck. Life is back to normal now. Abbie had a great PT/OT session on Monday, and did HBOT today. On the way home, past the port, Debbie asked her where the boats were. Without any hesitation she turned her head to look out the window at them. Things like that make me smile!
Her burn is all closed now, so we are able to put her back in the tub, to her great satisfaction. We have committed to working in her neurodevelopmental program during the day, and she seems to like it (most of the time).
I owe so many people emails since 3 of the boys were home the last two weeks, and RJ has been sick so far this week...I will get them out as soon as I can, just know that I am thinking of you!
Wednesday, October 11, 2006
A New Doctor
We met a new partner on our journey today, Dr. U. is a pediatric endocrinologist who we visited to discuss possible hypothyroidism and precocious puberty. I am less concerned lately about her thyroid, because I've come to understand that, like everything else, this gland's function is dependent on proper voltage. There are three critical minerals the thyroid only absorbs in a very narrow pH (or voltage) range. Since I know that Abbie is not yet in that range, I know she is not adequately absorbing these minerals and is thus hypothyroidic. I believe this will be resolved once we get her voltage up. The more nagging concern is the possible onset of early puberty. Part of me doesn't want to write about this, to protect Abbie, but part of me knows there may be other brain injury families reading this, so for them I will be open about this new concern.
Dr. U. explained that the body always wants to go into puberty but a healthy neurological system is able to suppress this until the proper time. Any neurological issues, such as a head injury, a seizure disorder, or a tumor can alter the suppression ability, allowing the body to prematurely enter puberty. The pituitary gland, located in the brain, is responsible for the production of many hormones, some of which play into puberty. Because of Abbie's injury she is predisposed to "precocious puberty" and lately we have been seeing some signs that this may be impending. The biggest risk of this is that if it proceeds unchecked her body may only have 3 or 4 more years to grow, and then, thinking that puberty and the growth years are complete, her body will stop growing. We are going to check her hormone levels with blood tests and also check how far she may have progressed into puberty with an Xray of her hand and wrist. The bones will tell us how old they "think" they are, and will help us understand exactly where we are at on the curve.
There is a medication called Lupron, that can stall the progression. This is delivered with an intramuscular shot, making it very painful. Abbie would potentially need one every three to four weeks for up to four years. Just when I thought there weren't any more painful decisions left to uncover in our brain injury box... Dr. U. did tell me of one mother who stopped having her daughter take the shots after one year to purposefully keep her small, to make caregiving more manageable. I can certainly understand that point of of view, but at this point I am not willing to stunt her growth to save my back.
We will follow up with Dr. U. in two weeks to go over the results of the test and determine how to proceed. Please pray especially for the Xray results. I don't think anything in the blood tests will especially surprise us, but I am really hoping that her bones don't show a great difference between her age and their condition. Abbie is going to be my tall, beautiful ballerina, and I can't imagine her any other way.
As for Abbie herself...she is doing great! Her burn is almost completely closed now, with a majority of the skin being pink and smooth. We are seeing new things all the time. The latest is the increased frequency and speed of her turning her head to follow something or to engage. Much better eye contact is such a blessing! Her strength is also increasing. She has great head and trunk control even on an unstable surface like a rolling or bouncing ball. We are now challenging her to see how far we can lean her back when she's sitting and have her maintain head control. We are all the way back to a 45-degree angle now, which says alot about the strength in her neck and tummy muscles!
She awoke on Monday just "different"...she was so loose and happy. Who knows why. That is one of the frustrations about this journey...you are never completely sure what's wrong on the hard days and are equally lost about what went right on the good days. Monday night I held her on my lap in bed and she felt completely normal to me, snuggling just as we did the night before her injury. I cannot describe how wonderful that felt, and the hope it stirred in me. There are times I forget how life, how Abbie, used to be...perhaps that is God's mercy. But, seeing glimpses of it again through the trip to Disneyland and through Abbie's good day remind me that I don't want to get used to this life. No matter how tired I may be, or how comfortable I have become, I want perservere until our joy is complete.
Dr. U. explained that the body always wants to go into puberty but a healthy neurological system is able to suppress this until the proper time. Any neurological issues, such as a head injury, a seizure disorder, or a tumor can alter the suppression ability, allowing the body to prematurely enter puberty. The pituitary gland, located in the brain, is responsible for the production of many hormones, some of which play into puberty. Because of Abbie's injury she is predisposed to "precocious puberty" and lately we have been seeing some signs that this may be impending. The biggest risk of this is that if it proceeds unchecked her body may only have 3 or 4 more years to grow, and then, thinking that puberty and the growth years are complete, her body will stop growing. We are going to check her hormone levels with blood tests and also check how far she may have progressed into puberty with an Xray of her hand and wrist. The bones will tell us how old they "think" they are, and will help us understand exactly where we are at on the curve.
There is a medication called Lupron, that can stall the progression. This is delivered with an intramuscular shot, making it very painful. Abbie would potentially need one every three to four weeks for up to four years. Just when I thought there weren't any more painful decisions left to uncover in our brain injury box... Dr. U. did tell me of one mother who stopped having her daughter take the shots after one year to purposefully keep her small, to make caregiving more manageable. I can certainly understand that point of of view, but at this point I am not willing to stunt her growth to save my back.
We will follow up with Dr. U. in two weeks to go over the results of the test and determine how to proceed. Please pray especially for the Xray results. I don't think anything in the blood tests will especially surprise us, but I am really hoping that her bones don't show a great difference between her age and their condition. Abbie is going to be my tall, beautiful ballerina, and I can't imagine her any other way.
As for Abbie herself...she is doing great! Her burn is almost completely closed now, with a majority of the skin being pink and smooth. We are seeing new things all the time. The latest is the increased frequency and speed of her turning her head to follow something or to engage. Much better eye contact is such a blessing! Her strength is also increasing. She has great head and trunk control even on an unstable surface like a rolling or bouncing ball. We are now challenging her to see how far we can lean her back when she's sitting and have her maintain head control. We are all the way back to a 45-degree angle now, which says alot about the strength in her neck and tummy muscles!
She awoke on Monday just "different"...she was so loose and happy. Who knows why. That is one of the frustrations about this journey...you are never completely sure what's wrong on the hard days and are equally lost about what went right on the good days. Monday night I held her on my lap in bed and she felt completely normal to me, snuggling just as we did the night before her injury. I cannot describe how wonderful that felt, and the hope it stirred in me. There are times I forget how life, how Abbie, used to be...perhaps that is God's mercy. But, seeing glimpses of it again through the trip to Disneyland and through Abbie's good day remind me that I don't want to get used to this life. No matter how tired I may be, or how comfortable I have become, I want perservere until our joy is complete.
Friday, October 06, 2006
A Magical Time
We are back from the "Happiest Place on Earth", and it certainly lived up to that billing for us. Halfway through our first day there I realized that not since I was a young child have I been at a Disney property without a stroller and all the accompanying gear...it was great fun to be able to move with ease, to ride all the rides together, to laugh, to play, to eat (and eat...it's all about the frozen bananas!) It was so sweet for me to enjoy every moment , every experience with the boys.
The boys thought of their sister at almost every moment. When we were souvenier shopping on Saturday, Matthew found a bead bracelet building station. He told me he wanted to make an "Abbie" bracelet, so with a huge smile I began to help him do that. About the time we were done RJ found us, and said, "Wait, it needs to say 'I LOVE Abbie'". We all agreed he was right, so we found the "I" and a great big red heart. With the addition of those things and a Minnie bow, the masterpiece was complete. Matthew then melted my heart by insisting on wearing the bracelet the whole time we were there.
Abbie did wonderfully while we were gone, because of how much tender, loving care she received. With each call home my apprehension was replaced with joy as I would get reports of her engaging with the children of the friends who watched her each day. She turned her head back and forth to watch Macy and Hailey - which sounds dangerously close to tracking! She was so pleased to recieve friendship bracelets from Keiko and Katy that she lifted her arm and looked at them for a long time. She was vocal, responsive and playful. In short, as we have seen lately, she thrived on the interaction with other kids. This has challenged Ray and I to figure out how to get more of this for her.
There have been many blessings in the journey with Abbie, one of the most precious being the opportunity to witness the depth of character and love in the hearts of our friends. Debbie spent the night with Abbie each night we were gone, and then each day a different set of our friends would take over...they truly made our Disney Dream possible.
We took a day off on Wednesday so I could get recharged, and now we are back in full swing. We did HBOT yesterday and today, PT yesterday and today, and also had Abbie's speech group today. Her burn is healing quite well...out of the nine inch original burn only about two inches is still open. It is still causing her pain, however, so would you pray for comfort, pain relief and speedy healing?
We are seeing her use her vision more and more effectively, which is exciting. Her head and trunk control is also improving, most notably in her ability to remain in control as we tilt her body side to side. She is also doing great at bench-sitting, which requires her to bend her knees to 90 degrees and put her feet flat on the floor while still holding her trunk and head. What makes me smile the most, though, is how much she has been using her voice...very intentionally, every appropriately, and often with a smile. We usually can't decipher what she is saying, but it certainly had meaning to her so we will get there in time.
I must admit to being a bit melancholy on Wednesday, the day after we returned from California. Our wonderful trip gave me a taste of what is would be like to have a "normal" family again, to be able to have energy to focus on the boys, and what it is like to actually sleep at night. I pray that it was just an appetizer for the feast of joy that is coming. On the trip home we all agreed that when Abbie is all better we are taking her to Disney World...there is much her brothers want to show her and many princesses she needs to meet!
The boys thought of their sister at almost every moment. When we were souvenier shopping on Saturday, Matthew found a bead bracelet building station. He told me he wanted to make an "Abbie" bracelet, so with a huge smile I began to help him do that. About the time we were done RJ found us, and said, "Wait, it needs to say 'I LOVE Abbie'". We all agreed he was right, so we found the "I" and a great big red heart. With the addition of those things and a Minnie bow, the masterpiece was complete. Matthew then melted my heart by insisting on wearing the bracelet the whole time we were there.
Abbie did wonderfully while we were gone, because of how much tender, loving care she received. With each call home my apprehension was replaced with joy as I would get reports of her engaging with the children of the friends who watched her each day. She turned her head back and forth to watch Macy and Hailey - which sounds dangerously close to tracking! She was so pleased to recieve friendship bracelets from Keiko and Katy that she lifted her arm and looked at them for a long time. She was vocal, responsive and playful. In short, as we have seen lately, she thrived on the interaction with other kids. This has challenged Ray and I to figure out how to get more of this for her.
There have been many blessings in the journey with Abbie, one of the most precious being the opportunity to witness the depth of character and love in the hearts of our friends. Debbie spent the night with Abbie each night we were gone, and then each day a different set of our friends would take over...they truly made our Disney Dream possible.
We took a day off on Wednesday so I could get recharged, and now we are back in full swing. We did HBOT yesterday and today, PT yesterday and today, and also had Abbie's speech group today. Her burn is healing quite well...out of the nine inch original burn only about two inches is still open. It is still causing her pain, however, so would you pray for comfort, pain relief and speedy healing?
We are seeing her use her vision more and more effectively, which is exciting. Her head and trunk control is also improving, most notably in her ability to remain in control as we tilt her body side to side. She is also doing great at bench-sitting, which requires her to bend her knees to 90 degrees and put her feet flat on the floor while still holding her trunk and head. What makes me smile the most, though, is how much she has been using her voice...very intentionally, every appropriately, and often with a smile. We usually can't decipher what she is saying, but it certainly had meaning to her so we will get there in time.
I must admit to being a bit melancholy on Wednesday, the day after we returned from California. Our wonderful trip gave me a taste of what is would be like to have a "normal" family again, to be able to have energy to focus on the boys, and what it is like to actually sleep at night. I pray that it was just an appetizer for the feast of joy that is coming. On the trip home we all agreed that when Abbie is all better we are taking her to Disney World...there is much her brothers want to show her and many princesses she needs to meet!
Wednesday, September 27, 2006
A New Report Card
I am pleased to share Miss Abbie's latest MEAD "grade"! After falling back down to -2 millivolts, when we measured her last Friday she was back up to -10!! I believe that this means that the new diet is starting to work. She has been on it for almost 5 weeks now, and we were told to expect changes to start manifesting 6-8 weeks after we started it. I think we should be able to avoid any more big drops in the future, and hope that this is just the beginning of a steady incline in her voltage.
HBOT continues to go well. She hardly fusses at all during the dives and often dozes for the last 15 minutes or so. Her burn is healing so well -- of the 9 inches originally burned, only about 3 of it is still open, and that is close to healing as well.
Because of staffing changes, we recently began working with a new OT, Patty. She is really good with Abbie, and we discovered this week that she is just the human jukebox we have been searching for. Her songs kept Abbie engaged and motivated during the session. We saw some good vision things, including some tracking, and she was so good with head control that we stopped even timing it.
We do have a big prayer request. For the first time since Abbie was injured, Ray and I are taking the boys on a little getaway. We will be going to Disneyland over the weekend, leaving Abbie in the care of Debbie, Genevieve and some very faithful friends. This was a hard decision for us, but our boys have sacrificed so much these past couple of years, and we have missed out on a lot with them. We saw them growing up before our eyes and knew that we were missing the window. Please pray that Abbie would be healthy, that her caregivers would be confident and comfortable in caring for her. Please pray that we (really I mean "I") can relax and trust while we are away. Matthew was tearful for three days after we told him we were going without Abbie, saying, "If she's not going, I don't want to go either." I was so blessed to see his heart for his sister. But, this will be a good thing for all of us....and next year we are planning on Abbie walking around Disneyland with us!
A very happy birthday to our son Kyle, who turns 14 today (9/27). Can it be that long ago that I watched the sun rise over Mount Rainier as I held my brand new baby boy? He actually left this morning for a three day leadership camp with his class, so we settled for birthday waffles with whipped cream and candles this morning. We are so proud of the young man he is becoming and are so thankful that God blessed our family with him!
HBOT continues to go well. She hardly fusses at all during the dives and often dozes for the last 15 minutes or so. Her burn is healing so well -- of the 9 inches originally burned, only about 3 of it is still open, and that is close to healing as well.
Because of staffing changes, we recently began working with a new OT, Patty. She is really good with Abbie, and we discovered this week that she is just the human jukebox we have been searching for. Her songs kept Abbie engaged and motivated during the session. We saw some good vision things, including some tracking, and she was so good with head control that we stopped even timing it.
We do have a big prayer request. For the first time since Abbie was injured, Ray and I are taking the boys on a little getaway. We will be going to Disneyland over the weekend, leaving Abbie in the care of Debbie, Genevieve and some very faithful friends. This was a hard decision for us, but our boys have sacrificed so much these past couple of years, and we have missed out on a lot with them. We saw them growing up before our eyes and knew that we were missing the window. Please pray that Abbie would be healthy, that her caregivers would be confident and comfortable in caring for her. Please pray that we (really I mean "I") can relax and trust while we are away. Matthew was tearful for three days after we told him we were going without Abbie, saying, "If she's not going, I don't want to go either." I was so blessed to see his heart for his sister. But, this will be a good thing for all of us....and next year we are planning on Abbie walking around Disneyland with us!
A very happy birthday to our son Kyle, who turns 14 today (9/27). Can it be that long ago that I watched the sun rise over Mount Rainier as I held my brand new baby boy? He actually left this morning for a three day leadership camp with his class, so we settled for birthday waffles with whipped cream and candles this morning. We are so proud of the young man he is becoming and are so thankful that God blessed our family with him!
Golden Dreams
Last Wednesday night, after our small group spent a lot of time praying, I dreamt that we were back in the circle in our living room praying together. In the midst of it one woman, Laura, turned to me and said, "The golden dogs are bringing her healing." Even in my dream I snorted, laughed and gave her a "You're crazy" look. I woke up remembering that silly dream, and chuckled about it as I ate breakfast.
I kept right on laughing until suddenly it fit together...the "golden dogs." A while back Abbie was visited in therapy by a puppy training to be a therapy dog who will work at the children's hospital. Tucker is a beautiful, mellow Golden Retriever. Shortly after that session Ray called and said he'd gotten an email saying that the trainers were looking for a foster family for Tucker to live with after he'd completed his training. The only requirements were that you had to be a Kapiolani employee and you had to be willing to transport the dog to the hospital four days a week. Kapiolani is one of the hospitals Ray oversees, so we checked that block. I told him what a wonderful dog Tucker is, so Ray put our name on the list. As time went by, however, the reality of the second requirement seemed too much for us right now. As Ray put it, "I don't think we can handle a dog with a job." So, he reluctantly removed our name from the list. My dream made me wonder if we had made a mistake. But, I have a very wise husband who usually knows my limits much better than I do, so I decided not to push the issue.
I related the crazy dream to Lynette, our PT, during our session that morning. I still thought it funny, but it did stir the wonder in my heart a little, too. Toward the end of the session there was a knock on the door, and when we opened it who came through but Tucker. He is being trained on Maui, so it was a surprise to even see him. The trainers said they were on the way out when they heard Abbie was in therapy, so they brought Tucker back to see her. He immediatly began giving her big, sloppy kisses, which she loved. The trainers raised their eyebrows and said, "He doesn't do this...this is only with Abbie." They expressed how disappointed they were that we'd removed our names from the list because they really thought it was meant to be. The first time we met Tucker he was wearing a hand-me-down collar with "Abby" embroidered on it...they took it as a sign, and I tried (in vain) to ignore it. Hearing them express how much they thought Tucker and Abbie have a special connection made me think the "Golden dogs are bringing her healing" phrase might not have been too far off-base.
Ray did get a phone call the next day asking if we would reconsider...I tried to conceal my glee, but failed miserably. I am praying that we can find a way to make it work. Lynette even suggested that some of the hospital volunteers may love to pick up a cute dog every day...we'll see...please just pray that this situation would work out just the way it is supposed to and that I wouldn't get in the middle of it and muck things up. Tucker would be wonderful for Abbie, and actually him going to work every day would be a good thing.
This is a long story, I know, and it's a bit odd. I suppose I shared it to include you in some of the strange and wonderful ways God is moving in our lives. Some days He really makes me laugh.
I kept right on laughing until suddenly it fit together...the "golden dogs." A while back Abbie was visited in therapy by a puppy training to be a therapy dog who will work at the children's hospital. Tucker is a beautiful, mellow Golden Retriever. Shortly after that session Ray called and said he'd gotten an email saying that the trainers were looking for a foster family for Tucker to live with after he'd completed his training. The only requirements were that you had to be a Kapiolani employee and you had to be willing to transport the dog to the hospital four days a week. Kapiolani is one of the hospitals Ray oversees, so we checked that block. I told him what a wonderful dog Tucker is, so Ray put our name on the list. As time went by, however, the reality of the second requirement seemed too much for us right now. As Ray put it, "I don't think we can handle a dog with a job." So, he reluctantly removed our name from the list. My dream made me wonder if we had made a mistake. But, I have a very wise husband who usually knows my limits much better than I do, so I decided not to push the issue.
I related the crazy dream to Lynette, our PT, during our session that morning. I still thought it funny, but it did stir the wonder in my heart a little, too. Toward the end of the session there was a knock on the door, and when we opened it who came through but Tucker. He is being trained on Maui, so it was a surprise to even see him. The trainers said they were on the way out when they heard Abbie was in therapy, so they brought Tucker back to see her. He immediatly began giving her big, sloppy kisses, which she loved. The trainers raised their eyebrows and said, "He doesn't do this...this is only with Abbie." They expressed how disappointed they were that we'd removed our names from the list because they really thought it was meant to be. The first time we met Tucker he was wearing a hand-me-down collar with "Abby" embroidered on it...they took it as a sign, and I tried (in vain) to ignore it. Hearing them express how much they thought Tucker and Abbie have a special connection made me think the "Golden dogs are bringing her healing" phrase might not have been too far off-base.
Ray did get a phone call the next day asking if we would reconsider...I tried to conceal my glee, but failed miserably. I am praying that we can find a way to make it work. Lynette even suggested that some of the hospital volunteers may love to pick up a cute dog every day...we'll see...please just pray that this situation would work out just the way it is supposed to and that I wouldn't get in the middle of it and muck things up. Tucker would be wonderful for Abbie, and actually him going to work every day would be a good thing.
This is a long story, I know, and it's a bit odd. I suppose I shared it to include you in some of the strange and wonderful ways God is moving in our lives. Some days He really makes me laugh.
Tuesday, September 26, 2006
Resistance
I have been delayed in posting because it has been a very eventful couple of weeks around our house. I am not going to bore you with most of the details because I want this to remain Abbie’s site and not the Vara Family Soap Opera. But, I will share with you the events involving Abbie, because I have decided that to not write about them would be like hiding her candle, and I never want to do that!
After a challenging week our family was very excited last Saturday to escape to the UH football home opener. If you’ve read Abbie’s website for long you know that UH football has been an oasis for us during this journey, a time to be with our boys and forget how different our life is for a while. It was a great game, and at one point I even turned to Ray and said proudly, “I am really here, in the moment – I am not worried about anything.” That turned out to be a short time-out, because it all changed once we arrived home. I walked into Abbie’s room to find her caregiver crying so hysterically she couldn’t say anything, and could only point at Abbie’s left leg. I worried that it has been dislocated or broken, but as I got closer I saw an enormous burn on the outside of her leg, from just above the knee to an inch above her ankle. Most of the skin had already blistered and was hanging.
Her caregiver has known Abbie since before she was hurt, and was completely devastated both by her initial injury and now by the burn. Actually, having her so upset probably helped me because I had to focus not only on the burn but also on calming her down. I just said, “Hang on – we can fix this!” and ran to get the Biomodulator. I made her watch me treat Abbie for about 30 minutes, during which time we saw noticeable improvement. That comforted her enough to allow her to drive home. I continued to treat Abbie for about 4 hours, until I could not longer stay awake. I was very pleased, though, with how much better it looked in the morning. As best we can tell our bathtub malfunctioned while Abbie was having her bath, and the sauna jets turned on, sending shots of steam directly onto Abbie’s leg. The burn would’ve happened no matter who was bathing her that night.
Fortunately, the plastic surgeon who runs the burn unit at one of Ray’s hospitals lives right up the street and kindly stopped by on Sunday to check the burn. He said, “Yep, that’s a good second degree burn. It’s lucky it’s not third or we would have to graft something that large. The good news is it will heal in 7-10 days, the bad news is that this is the most painful kind of burn.” He came back later in the day, bringing the supplies I would need to do the twice-daily dressing changes. Caring for this burn has been the most emotionally-challenging thing I’ve had to do for Abbie since her initial injury. With every dressing change I have to scrape the burn, which is 9”x3”, all the while just imagining how much that would hurt if someone were doing it to me. She is such a trooper though, and handles it much better than I would.
In true Romans 8:28 fashion, God has used this for good. Ray and I have been praying fervently lately about what the priority list for Abbie should look like. There are so many things we want to do for her, and it’s hard to figure out what should come first. Abbie’s burn brought immediate clarity. Hyperbaric Oxygen Therapy (HBOT) is very good for healing burns, and was on our priority list. So, we did our first session (“dive”) last Thursday, the second on Saturday and the third yesterday. It has made an enormous difference with the burn, which is healing very nicely. Please, though, pray for quick and complete healing and for ever-decreasing pain. I am also hopeful that HBOT will make a difference with her brain injury.
I must yet again be a billboard for small group ministry. I sent out an email to our small group detailing the battles we’ve been through lately, and when they came over on Wednesday we skipped our usual study and prayed instead. We prayed over our house, over Abbie, over every situation that has come up lately. In essence, we reclaimed our peace. I don’t know how we would travel this path without our precious “La Familia” (we call ourselves that in spite of being a half Asian, half caucasian group…go figure.)
As we were praying it hit me…all these events were not random, but an attack. And, strung together they appeared to be the attack of a desperate enemy, one final assault. That just made me think one thing, victory is very, very near. With that realization I began thinking, “Is that all you’ve got? Do you think these things, as difficult as they are, will make us quit now? We have trudged for too long, through waters too deep to turn back now. If that is the best you’ve got…you LOSE!”
After a challenging week our family was very excited last Saturday to escape to the UH football home opener. If you’ve read Abbie’s website for long you know that UH football has been an oasis for us during this journey, a time to be with our boys and forget how different our life is for a while. It was a great game, and at one point I even turned to Ray and said proudly, “I am really here, in the moment – I am not worried about anything.” That turned out to be a short time-out, because it all changed once we arrived home. I walked into Abbie’s room to find her caregiver crying so hysterically she couldn’t say anything, and could only point at Abbie’s left leg. I worried that it has been dislocated or broken, but as I got closer I saw an enormous burn on the outside of her leg, from just above the knee to an inch above her ankle. Most of the skin had already blistered and was hanging.
Her caregiver has known Abbie since before she was hurt, and was completely devastated both by her initial injury and now by the burn. Actually, having her so upset probably helped me because I had to focus not only on the burn but also on calming her down. I just said, “Hang on – we can fix this!” and ran to get the Biomodulator. I made her watch me treat Abbie for about 30 minutes, during which time we saw noticeable improvement. That comforted her enough to allow her to drive home. I continued to treat Abbie for about 4 hours, until I could not longer stay awake. I was very pleased, though, with how much better it looked in the morning. As best we can tell our bathtub malfunctioned while Abbie was having her bath, and the sauna jets turned on, sending shots of steam directly onto Abbie’s leg. The burn would’ve happened no matter who was bathing her that night.
Fortunately, the plastic surgeon who runs the burn unit at one of Ray’s hospitals lives right up the street and kindly stopped by on Sunday to check the burn. He said, “Yep, that’s a good second degree burn. It’s lucky it’s not third or we would have to graft something that large. The good news is it will heal in 7-10 days, the bad news is that this is the most painful kind of burn.” He came back later in the day, bringing the supplies I would need to do the twice-daily dressing changes. Caring for this burn has been the most emotionally-challenging thing I’ve had to do for Abbie since her initial injury. With every dressing change I have to scrape the burn, which is 9”x3”, all the while just imagining how much that would hurt if someone were doing it to me. She is such a trooper though, and handles it much better than I would.
In true Romans 8:28 fashion, God has used this for good. Ray and I have been praying fervently lately about what the priority list for Abbie should look like. There are so many things we want to do for her, and it’s hard to figure out what should come first. Abbie’s burn brought immediate clarity. Hyperbaric Oxygen Therapy (HBOT) is very good for healing burns, and was on our priority list. So, we did our first session (“dive”) last Thursday, the second on Saturday and the third yesterday. It has made an enormous difference with the burn, which is healing very nicely. Please, though, pray for quick and complete healing and for ever-decreasing pain. I am also hopeful that HBOT will make a difference with her brain injury.
I must yet again be a billboard for small group ministry. I sent out an email to our small group detailing the battles we’ve been through lately, and when they came over on Wednesday we skipped our usual study and prayed instead. We prayed over our house, over Abbie, over every situation that has come up lately. In essence, we reclaimed our peace. I don’t know how we would travel this path without our precious “La Familia” (we call ourselves that in spite of being a half Asian, half caucasian group…go figure.)
As we were praying it hit me…all these events were not random, but an attack. And, strung together they appeared to be the attack of a desperate enemy, one final assault. That just made me think one thing, victory is very, very near. With that realization I began thinking, “Is that all you’ve got? Do you think these things, as difficult as they are, will make us quit now? We have trudged for too long, through waters too deep to turn back now. If that is the best you’ve got…you LOSE!”
Sunday, September 17, 2006
Dancing the Same Dance
The "Two steps forward, one step back" waltz continues at our house. We watched as Abbie's voltage dropped to 5 last weekend and landed back down near 2 again this week. We think we know why this is happening, and we are in the midst of the process to solve it permanently, which makes is much easier to see discouraging numbers come up on the screen. In 3-5 weeks her liver should be in much better shape, and we should see her numbers start to rise again.
We took the MEAD (voltage measuring device) to PT with us on Thursday so we could show Lynette how it works. She thought it would be interesting to measure before and after therapy, so we did. Even though Abbie's voltage was pretty much in the basement at the start of the session, it did go down a little afterward. We expected to see this as her hard work during PT drained energy from her. This was a good illustration for us to see, though, and influences me to do mellow things with Abbie right now...a lot of work on vision, hearing, sensation, speech and not so much on gross motor.
As I said, all this is easier for me to take because I know where we are going and can see there is a way out for Abbie. But, that doesn't make Abbie free yet. We were waiting to go into therapy and there was a little girl in the midst of a session who was supposed to be practicing running down the hall. She was quite a rascal, laughing incessantly, and not exactly task-oriented. The therapist put a big yellow dot on the hallway floor and told her to run from that to the therapist to get a sticker. She finally did right before we went into Abbie's therapy session. On the way to the car I told Abbie, "Pretty soon that will be you, running from the yellow dot to get a star sticker." Big tears began rolling down her cheeks. That running practice can't come soon enough!
Koo Barnes posted a very interesting article on her husband Chris's site. http://www.guardian.co.uk/g2/story/0,,1870171,00.html#article_continue
The lengthy article detailed the effects that the sleep drug Ambien is having in people who are minimally responsive or in vegetative states. For about 60% of recipients, dramatic changes begin occurring within 30 minutes of taking the drug. While I don't think I will consider giving this to Abbie, there were a couple of very interesting points raised. A man named Louis, who is typically in a minimally responsive state, is able to converse normally after taking the medication. He was asked if he feels a difference in awareness before and after taking the pill. He said "no". So, on the inside Louis feels exactly the same and has the same level of awareness...which fits exactly with what so many brain injury families feel, that our loved ones are "right there", just unable to communicate effectively. The second point I noted was that after observing "miraculous" changes in people like Louis, doctors did some imaging to figure out what was actually happening. After being given the medication, areas in patients' brains that had showed up black and "dead" on previous scans began to light up with activity. Hmmmm...perhaps they weren't "dead" areas after all. The researchers have begun to theorize that the traumatized brain cells may go into some sort of hibernation controlled by a neurochemical called GABA. So, all those ugly scans that we, and many other families, have had to endure may not be as black and white, literally, as we thought. There is so much hope!
We took the MEAD (voltage measuring device) to PT with us on Thursday so we could show Lynette how it works. She thought it would be interesting to measure before and after therapy, so we did. Even though Abbie's voltage was pretty much in the basement at the start of the session, it did go down a little afterward. We expected to see this as her hard work during PT drained energy from her. This was a good illustration for us to see, though, and influences me to do mellow things with Abbie right now...a lot of work on vision, hearing, sensation, speech and not so much on gross motor.
As I said, all this is easier for me to take because I know where we are going and can see there is a way out for Abbie. But, that doesn't make Abbie free yet. We were waiting to go into therapy and there was a little girl in the midst of a session who was supposed to be practicing running down the hall. She was quite a rascal, laughing incessantly, and not exactly task-oriented. The therapist put a big yellow dot on the hallway floor and told her to run from that to the therapist to get a sticker. She finally did right before we went into Abbie's therapy session. On the way to the car I told Abbie, "Pretty soon that will be you, running from the yellow dot to get a star sticker." Big tears began rolling down her cheeks. That running practice can't come soon enough!
Koo Barnes posted a very interesting article on her husband Chris's site. http://www.guardian.co.uk/g2/story/0,,1870171,00.html#article_continue
The lengthy article detailed the effects that the sleep drug Ambien is having in people who are minimally responsive or in vegetative states. For about 60% of recipients, dramatic changes begin occurring within 30 minutes of taking the drug. While I don't think I will consider giving this to Abbie, there were a couple of very interesting points raised. A man named Louis, who is typically in a minimally responsive state, is able to converse normally after taking the medication. He was asked if he feels a difference in awareness before and after taking the pill. He said "no". So, on the inside Louis feels exactly the same and has the same level of awareness...which fits exactly with what so many brain injury families feel, that our loved ones are "right there", just unable to communicate effectively. The second point I noted was that after observing "miraculous" changes in people like Louis, doctors did some imaging to figure out what was actually happening. After being given the medication, areas in patients' brains that had showed up black and "dead" on previous scans began to light up with activity. Hmmmm...perhaps they weren't "dead" areas after all. The researchers have begun to theorize that the traumatized brain cells may go into some sort of hibernation controlled by a neurochemical called GABA. So, all those ugly scans that we, and many other families, have had to endure may not be as black and white, literally, as we thought. There is so much hope!
Tuesday, September 12, 2006
On the Mend
Abbie and I continue our E.T.-Elliot relationship, always seeming to ail at the same time and recovering in synch. This doesn't make it easy on our family, having her needs rise just when I am unable to meet them, but it seems that we are finally both feeling better again.
We have been keeping her on oxygen at night just so she can sleep soundly, which also gives us a better chance at some decent sleep as well. Her heart rates have been falling, with sleep rates into the 60s and awake rates around 100. I take this as a sign of relaxation and calm, which is encouraging.
Her diet is going well, except for some brotherly complaints about an increase in the number of stinky, poopy diapers every day. Hey - a newborn diet begets newborn diapers, what can I say?
We had a good PT/OT session today. One of her goals is to assist in transfers by standing up on the footplates of her wheelchair. She was able to bend her legs nicely to get in the right position to do this, and the ease of this is increasing as well. Honestly, I spent the whole session talking to the resident who was observing. I'd started to tell Lynette about Abbie's superb report card last week, when she said, "Wait! We have a resident coming...start telling me when he gets here so he can hear the whole thing." I believe I answered, "OK, so he can think 'this mom is crazy!'" But, I did wait until he arrived to start my spiel about how her voltage has risen 9 points in two weeks. Instead of a confused look, his eyes lit up. Turns out he is training to be a pediatric neurodevelopmentalist, a very new specialty. He longs to find options to offer kids with autism and CP, and felt that it had to be electrical somehow, since the brain is one giant electrical organ.
The best summation of our conversation was his comment, "Wow! It sounds like I need to go to Dallas and meet Dr. Tennant!!" I was thrilled to see a future specialist "get it"! I told him how much hope it gives me and how much families like mine are depending on physicians like him to bring new technologies and opportunities into reality for our kids.
I will never have the mind of a physicist or have a PhD after my name, but I am more than content to be a gardener, planting little seeds as I go, trusting in God to bring the harvest.
We have been keeping her on oxygen at night just so she can sleep soundly, which also gives us a better chance at some decent sleep as well. Her heart rates have been falling, with sleep rates into the 60s and awake rates around 100. I take this as a sign of relaxation and calm, which is encouraging.
Her diet is going well, except for some brotherly complaints about an increase in the number of stinky, poopy diapers every day. Hey - a newborn diet begets newborn diapers, what can I say?
We had a good PT/OT session today. One of her goals is to assist in transfers by standing up on the footplates of her wheelchair. She was able to bend her legs nicely to get in the right position to do this, and the ease of this is increasing as well. Honestly, I spent the whole session talking to the resident who was observing. I'd started to tell Lynette about Abbie's superb report card last week, when she said, "Wait! We have a resident coming...start telling me when he gets here so he can hear the whole thing." I believe I answered, "OK, so he can think 'this mom is crazy!'" But, I did wait until he arrived to start my spiel about how her voltage has risen 9 points in two weeks. Instead of a confused look, his eyes lit up. Turns out he is training to be a pediatric neurodevelopmentalist, a very new specialty. He longs to find options to offer kids with autism and CP, and felt that it had to be electrical somehow, since the brain is one giant electrical organ.
The best summation of our conversation was his comment, "Wow! It sounds like I need to go to Dallas and meet Dr. Tennant!!" I was thrilled to see a future specialist "get it"! I told him how much hope it gives me and how much families like mine are depending on physicians like him to bring new technologies and opportunities into reality for our kids.
I will never have the mind of a physicist or have a PhD after my name, but I am more than content to be a gardener, planting little seeds as I go, trusting in God to bring the harvest.
Thursday, September 07, 2006
Abbie's Report Card
Three weeks ago we were able to test Abbie's overall body voltage, and found that she was running on about 2 millivolts, compared to a normal voltage of 20 millivolts. Two weeks ago we radically changed her diet to enhance her ability to hold on to the voltage we are giving her with the Biomodulator. Debbie, Abbie's nurse, purchased the device ("MEAD" - Median Energy Analysis Device) used to test Abbie's voltage, and we used it for the first time today. I am sooooo very pleased to report that with just 14 days of good fats, Abbie's voltage is now up to 11 millivolts. WOW!! Much more than I was expecting to see this soon. I have been noticing little changes in Abbie, like better muscle tone, more vocalization, and more expressiveness, but I didn't want to get too excited before I saw some hard numbers. For her first MEAD report card Miss Abbie earns an A Plus!!!
I also got a wonderful call from Dr. Tennant this morning. He asked about my jaw, about how Abbie was doing, and I started wondering how he had the time to check on such things in the middle of the day. Then he said, "Are you ready for some good news??" I am always ready for some good news. So, he said, "I have someone here who wants to talk to you." He put Pam Wilson on the phone. Pam is the grandma of little Jordan who nearly drowned 2.5 months ago. They took Jordan to Dr. Tennant's clinic in Dallas this week - so far he's had three days of treatment there. As soon as Pam started speaking I could hear the tears of joy. She said, "Jordan's high muscle tone is GONE, all of it. He has no tone whatsoever!!!' You need to know that recently I talked to Pam, who was crying tears not rooted in joy because Jordan's tone was so high, but because his respiratory rate was so low the doctors wouldn't give him any anti-spasticity drugs like Baclofen. There was no remedy for him, and he was in obvious pain. Pam said that his facial expressions have returned to what they were before the accident as well. I was stunned and overjoyed to hear this because Jordan is the first near-drowning survivor to be treated at Dr. Tennant's clinic, so of course I think about what is possible for Abbie when I hear about Jordan's gains.
I told Dr. Tennnant, "I know this all works, I know why it works, and I believe you and Pam but it's still so incredible to think about -- real restoration!!" Praise God from Whom all blessings flow -- that song was all that would come out of my mouth for the next half hour. There is a way back for our hurt kids!!! And, with Abbie's latest report card I know she is well on her own way along that path!
A very good day!
I also got a wonderful call from Dr. Tennant this morning. He asked about my jaw, about how Abbie was doing, and I started wondering how he had the time to check on such things in the middle of the day. Then he said, "Are you ready for some good news??" I am always ready for some good news. So, he said, "I have someone here who wants to talk to you." He put Pam Wilson on the phone. Pam is the grandma of little Jordan who nearly drowned 2.5 months ago. They took Jordan to Dr. Tennant's clinic in Dallas this week - so far he's had three days of treatment there. As soon as Pam started speaking I could hear the tears of joy. She said, "Jordan's high muscle tone is GONE, all of it. He has no tone whatsoever!!!' You need to know that recently I talked to Pam, who was crying tears not rooted in joy because Jordan's tone was so high, but because his respiratory rate was so low the doctors wouldn't give him any anti-spasticity drugs like Baclofen. There was no remedy for him, and he was in obvious pain. Pam said that his facial expressions have returned to what they were before the accident as well. I was stunned and overjoyed to hear this because Jordan is the first near-drowning survivor to be treated at Dr. Tennant's clinic, so of course I think about what is possible for Abbie when I hear about Jordan's gains.
I told Dr. Tennnant, "I know this all works, I know why it works, and I believe you and Pam but it's still so incredible to think about -- real restoration!!" Praise God from Whom all blessings flow -- that song was all that would come out of my mouth for the next half hour. There is a way back for our hurt kids!!! And, with Abbie's latest report card I know she is well on her own way along that path!
A very good day!
Wednesday, September 06, 2006
Under the Weather
We had a wonderful weekend away at a beach house with our entire small group (7 families, 18 kids). Unfortunately, I think because it was hot and the house had no A/C, Abbie got overheated and too dried out. I noticed her lips turning blue as I fed her on Sunday - the first time I'd ever seen that. I hooked her up to the pulse ox and saw she was at 85. Good thing I'd packed a tank of oxygen "just in case". Her secretions were so thick she couldn't cough them up, and I think she got a mucous plug in her lungs. Frequent shots of saline spray through her nose loosened things up after a while, and she settled down at 1 liter of oxygen through the night.
By Monday morning the oxygen tank was empty, so it was a good thing Abbie could maintain her sats on her own. The weekend had taken its toll on her, however, and she was exhausted. Lack of sleep is her biggest seizure trigger, and sure enough, on Monday morning she began having bouts of seizures. I had her emergency medicine with me, but it can really depress breathing, so I didn't want to give it to her when she wasn't breathing well, I was out of O2 and we were an hour and a half from home. Thankfully, as soon as she nodded off for a catnap the seizures abated.
She started sounding junky in her chest yesterday, so I took her to the pediatrician today. She sounded clear in the chest and looked good otherwise, so this was just a little bump. She is handling her new diet beautifully, which is encouraging to me.
So, all that doesn't make it sound like we had a good weekend, but we did -- it was very memorable. I will try to post some pictures soon, as well as a better description of the absolute paradise that belonged to us for a few days.
I must admit that I am not bouncing back from my oral surgery as well as I'd hoped. Please pray for Abbie and I to recover so that the rest of the family can have some of my attention again. And, please pray for Gabby's family (www.gabbysmiracle.blogspot.com). She passed away on 8/31, with services scheduled for 9/9. I can't imagine their grief, but I also probably can't fathom the grace God is pouring out on them.
By Monday morning the oxygen tank was empty, so it was a good thing Abbie could maintain her sats on her own. The weekend had taken its toll on her, however, and she was exhausted. Lack of sleep is her biggest seizure trigger, and sure enough, on Monday morning she began having bouts of seizures. I had her emergency medicine with me, but it can really depress breathing, so I didn't want to give it to her when she wasn't breathing well, I was out of O2 and we were an hour and a half from home. Thankfully, as soon as she nodded off for a catnap the seizures abated.
She started sounding junky in her chest yesterday, so I took her to the pediatrician today. She sounded clear in the chest and looked good otherwise, so this was just a little bump. She is handling her new diet beautifully, which is encouraging to me.
So, all that doesn't make it sound like we had a good weekend, but we did -- it was very memorable. I will try to post some pictures soon, as well as a better description of the absolute paradise that belonged to us for a few days.
I must admit that I am not bouncing back from my oral surgery as well as I'd hoped. Please pray for Abbie and I to recover so that the rest of the family can have some of my attention again. And, please pray for Gabby's family (www.gabbysmiracle.blogspot.com). She passed away on 8/31, with services scheduled for 9/9. I can't imagine their grief, but I also probably can't fathom the grace God is pouring out on them.
Wednesday, August 30, 2006
Catching Up
Sorry it has been a while since the last update. I ended up having to take many more Vicodin than I had planned after my wisdom teeth were extracted. I found out today it was due to a dry socket -- so it's all packed now, I'm feeling much better, and more importantly, I am drug-free, so I can write without worrying about sounding like a crazy woman.
Abbie is doing even better than I expected with her new diet. I was concerned that the transition would take a while, but giving her the digestive support she needs, through enzymes and bile, has made it easy for her. She is now completely on raw milk, with some raw butter, coconut oil and eggs. I am amazed particularly about the eggs. We have tried many times over the last year to give her some eggs, but invariably she got sick and vomited. Now, there's not a hint of tummy upset or difficulty in digestion. Praise God! This has also taken so much mental strain away from me...I was forever trying to figure out how to make her diet better, what to add, what to leave out...and of course there was enough conflicting information to make my head spin. Now, I know exactly what to do, and it is so simple. My poor Vitamix is gathering dust and wondering what it do to deserve this shelving.
Chase very generously shared a cold with Abbie over the weekend, so she was a little subdued and had a lot of secretions. But, she's pretty well over it now and is back to her sassy self. She identified colors the other day more accurately and quicker than I've seen in months. She is also very quick with her switch this week, especially when we are joking around.
The boys and I were talking over the weekend about the plan to get Abbie better - they were excited to hear about a concrete plan that we have confidence in. In their enthusiasm they decided they wanted to help, so they've chosen to use the money they usually share turning in bottles and cans to help the Abbie Plan. This made me smile inside as I felt our family gather once again as a team. They also thought that perhaps all of Abbie's friends may want to join them in this effort, using bottle and can money. If your kids would like to help, they can send contributions (nickels and dimes welcome:) to: Abbie's Brothers
c/o PO Box 235201
Honolulu, HI 96823
Please know that this is an invitation for kids to be a part of Abbie's adventure in a tangible way. We do not want anyone to send contributions that come from funds their own families need or could use.
On a whole different page...I have recently been blessed to meet Betsy and Rusty, the parents of Ross Dillon (www.rossdillon.com) and the mother and grandmother (both named Diana) of Samantha (www.pray4samantha), as well as Samantha herself! Betsy and Rusty were in town for Dr. Tennant's recent seminar, and I learned so much from them. Most especially, as I wrote to Betsy, I learned "Persevere! Good things will come" Ross, a cyclist, was hit by a car in 2002. When they took him home in 2003 , "vegetative" was written in his chart. Now, he feeds himself, drives his electric wheelchair, writes his name and speaks in sentences. Not bad for a "vegetable", huh?
Samantha was driving home from school when she clipped a fence, sending one of the rails through the windshield, smashing the left side of her face. She was a real beauty queen (I have the picture of her wearing her crown to prove it). Now she is a queen of true grit. She walked in to our house, stroked Abbie's head and even gave her kisses. To call it emotional doesn't do that evening justice. One miracle giving love to another. When I hugged her goodbye I felt like I was holding a precious, fragile butterfly.
Abbie is doing even better than I expected with her new diet. I was concerned that the transition would take a while, but giving her the digestive support she needs, through enzymes and bile, has made it easy for her. She is now completely on raw milk, with some raw butter, coconut oil and eggs. I am amazed particularly about the eggs. We have tried many times over the last year to give her some eggs, but invariably she got sick and vomited. Now, there's not a hint of tummy upset or difficulty in digestion. Praise God! This has also taken so much mental strain away from me...I was forever trying to figure out how to make her diet better, what to add, what to leave out...and of course there was enough conflicting information to make my head spin. Now, I know exactly what to do, and it is so simple. My poor Vitamix is gathering dust and wondering what it do to deserve this shelving.
Chase very generously shared a cold with Abbie over the weekend, so she was a little subdued and had a lot of secretions. But, she's pretty well over it now and is back to her sassy self. She identified colors the other day more accurately and quicker than I've seen in months. She is also very quick with her switch this week, especially when we are joking around.
The boys and I were talking over the weekend about the plan to get Abbie better - they were excited to hear about a concrete plan that we have confidence in. In their enthusiasm they decided they wanted to help, so they've chosen to use the money they usually share turning in bottles and cans to help the Abbie Plan. This made me smile inside as I felt our family gather once again as a team. They also thought that perhaps all of Abbie's friends may want to join them in this effort, using bottle and can money. If your kids would like to help, they can send contributions (nickels and dimes welcome:) to: Abbie's Brothers
c/o PO Box 235201
Honolulu, HI 96823
Please know that this is an invitation for kids to be a part of Abbie's adventure in a tangible way. We do not want anyone to send contributions that come from funds their own families need or could use.
On a whole different page...I have recently been blessed to meet Betsy and Rusty, the parents of Ross Dillon (www.rossdillon.com) and the mother and grandmother (both named Diana) of Samantha (www.pray4samantha), as well as Samantha herself! Betsy and Rusty were in town for Dr. Tennant's recent seminar, and I learned so much from them. Most especially, as I wrote to Betsy, I learned "Persevere! Good things will come" Ross, a cyclist, was hit by a car in 2002. When they took him home in 2003 , "vegetative" was written in his chart. Now, he feeds himself, drives his electric wheelchair, writes his name and speaks in sentences. Not bad for a "vegetable", huh?
Samantha was driving home from school when she clipped a fence, sending one of the rails through the windshield, smashing the left side of her face. She was a real beauty queen (I have the picture of her wearing her crown to prove it). Now she is a queen of true grit. She walked in to our house, stroked Abbie's head and even gave her kisses. To call it emotional doesn't do that evening justice. One miracle giving love to another. When I hugged her goodbye I felt like I was holding a precious, fragile butterfly.
Thursday, August 24, 2006
Five Years Old!
Yesterday Abbie turned 5, and that day when we we first heard "It's a girl" replayed with sweetness and joy in our minds. That day seems like a lifetime ago, but we celebrate now knowing that this may be the last birthday she can't blow out her own candles and eat her own cake.
I had a couple wisdom teeth extracted yesterday (we are having Abbie's family celebration this weekend). So, I am on Vicodin and may be a little loopy, so I will keep this short. Just wanted to let you know that we tried raw milk with her for the first time this morning. I was very nervous as we started, and had Crystal with me so that we could tag-team suction if Abbie started vomiting.
It couldn't have gone better! She took it all in without even a cough, which is an improvement over her normal breakfast. What a relief for me, and yet another reason for our hope to rise. We are really on the way now! It's fitting that we are starting the day after her birthday, because I think this is the true beginning of her rebirth, and the emergence of all that has been locked inside her for so long now.
I've received some good emails about the raw milk..to answer, I've found a dairy that has both their cows and their milk lab-tested very frequently so I am comfortable that their products are safe.
I'm going to sign off now...its was reported to me by my dear husband that I was excessively chatty during the extraction yesterday (blame the nitrous oxide!), and I don't want to do that again. Have a blessed day!!
I had a couple wisdom teeth extracted yesterday (we are having Abbie's family celebration this weekend). So, I am on Vicodin and may be a little loopy, so I will keep this short. Just wanted to let you know that we tried raw milk with her for the first time this morning. I was very nervous as we started, and had Crystal with me so that we could tag-team suction if Abbie started vomiting.
It couldn't have gone better! She took it all in without even a cough, which is an improvement over her normal breakfast. What a relief for me, and yet another reason for our hope to rise. We are really on the way now! It's fitting that we are starting the day after her birthday, because I think this is the true beginning of her rebirth, and the emergence of all that has been locked inside her for so long now.
I've received some good emails about the raw milk..to answer, I've found a dairy that has both their cows and their milk lab-tested very frequently so I am comfortable that their products are safe.
I'm going to sign off now...its was reported to me by my dear husband that I was excessively chatty during the extraction yesterday (blame the nitrous oxide!), and I don't want to do that again. Have a blessed day!!
Monday, August 21, 2006
Unfathomable Blessings
OK, so here it is, the update I promised....I hope it lives up to the build up I gave it. If not, it will be a communication failure on my part, because I am still absorbing just how dramatically Abbie's journey has changed in the last week or so.
As many of you know, Dr. Jerry Tennant was in town last week to give a lecture and training seminar. We have been working with his device, the Biomodulator, for about a year now and credit much of Abbie's gains to it. But, truthfully, Dr. Tennant has given us much more than a device, he has given us a whole new paradigm about how to practice medicine and how to restore wellness.
He is a man that people fly from all over the world to meet and we were fortunate enough to have an extended period of time with him to discuss Abbie. That fact alone still overwhelms me. But, through his gracious sharing of his time, knowledge and the use of some new tests we have a whole new insight into what is going on with Abbie, and most importantly we now have a roadmap for the way back!!
This is going to be a lengthy update, but I believe it is the most important and most hopeful one I may ever write. God has long promised me, in the dark of the night when I've been crying, that this journey is so much bigger than I can see, and it will end up so much better than I can imagine. Now I have a glimpse, and He is so true to His Word.
Last week we were able to use something called a MEAD device to do a test called a "Nakatani" on Abbie. In three minutes this device gave us the voltage readings for all of Abbie's organs as well as her total body voltage. Normal body voltage is around 20 millivolts. Since we've been working with the Biomodulator and watching her diet for a year I was curious and hopeful about what we would see. The results came up on the laptop screen and my jaw dropped...2. Two measly millivolts is all the energy Abbie is running on. This is not enough for her organs to even function properly, let alone allow her to heal. It also helps explain why her stoma is open 17 months after decannulation -- she literally does not have the energy to heal it. I was heartbroken at first, and could not understand how this could be. I was also bursting with pride about my girl, who has been showing us great things solely through the strength of her will and heart. As Dr. Tennant put it, "She is obviously very motivated!"
The reason for her low voltage, however, has given us great hope because it is entirely fixable. The body stores voltage in the cell membranes, which are made entirely of fat. Abbie's liver is not functioning right now, so it is not producing bile, which is necessary to break down fat for digestion. The good fats I've been giving her have either been going right through her or have been coming back up as she coughs and vomits. Since she can't digest fats, her body doesn't have the building materials for good cell membranes, so she has no voltage storage capacity. The energy we put into her runs right out, which explains her chronic low voltage.
We are going to fix this by giving Abbie digestive supplements: Betaine, Ox bile, Digestabs, and a probiotic. We are also going to radically change her diet. For the forseeable future Abbie's diet will consist entirely of raw milk, eggs, marine phytoplankton, Vitamin C, and silicon. I must admit I had a questioning look on my face when that diet was proposed. But, raw milk, eggs and plankton are the only 3 complete foods on the planet...they each have everything needed for life in the proper ratios. Why silicon? Because it is a powerful electron donor, meaning it has energy to give, with a pH of 12. The other unique property of silicon is that if it is ingested with an appropriate probiotic is has the ability to transmutate into other minerals the body needs, like calcium. The neat thing about that is that only the amount the body needs will be transmutated, so we don't have to worry about overloading on something like calcium. The biggest thing we are trying to accomplish is to get five pounds of good fat into Abbie in the next 2 months. The liver is composed entirely of fat, and completely replaces itself every 6-8 weeks. The brain is also made mostly of fat, although it's replacement cycle is about 8 months. The good fats will help Abbie rebuild healthy organs as well as healthy cell membranes so she can hold onto the voltage we give her. The skin also has about a 6 week replacement cycle, so we are hopeful that in about 6-8 weeks, as she has a better a better liver and healthier skin we will really be able to get her voltage up and will see great changes. More about that later.
One word about raw milk, since I know there of some who gasped when I wrote that. Yes, it is safe. If bacteria grows in raw milk, it's gone in about 36 hours, if it grows in pasteurized milk it keeps multiplying. Raw milk is so powerful because it is a living food -- the enzymes haven't been killed by pastuerization. This allows even lactose intolerant people to drink it, because it still contains the lactase necessary for digestion. The fats in raw milk are intact, they haven't been shattered by homogenization, which is important when trying to build good cell membranes, in the same way as not wanting to build a windshield out of little shards of glass. It is illegal to buy or sell raw milk in Hawaii, so I've ordered some from California (I had to pay much more for shipping than for the milk.) But, if there is anyone on Oahu who has grass-fed cows or goats, or is willing to keep one, PLEASE contact me. This may be the most crucial element in determining how fast we can help Abbie get better. Dr. Tennant told me that his patients who go on raw milk get better in about half the time as those who don't.
We discussed what Abbie's low voltage means for things like a Botox procedure or a hip surgery. With a voltage as low as Abbies, and a liver unable to metabolize the anesthetic and the drugs all surgeries are now off the table, especially the hip procedure. To put her through a surgery that drastic with a voltage as low as hers would be extremely risky. I must say I am a little relieved, and recalled the recent struggle I'd been having with a promise I truly believed God had given me. When the hip procedure was first discussed I came home and wept, then opened my Bible. A verse I'd never noticed before stood out boldly to me and promised that "not one of her bones shall be broken." I claimed that for Abbie and was certain she wouldn't have to have the hip surgery. After looking at her hip films at a recent Shriner's appointment, and concluding that hip surgery was unavoidable, I really wondered how I had misheard God, wondered if I'd inserted my own desires into His mouth, wondered if I could trust myself to hear anything at all. All we have recently learned has put this procedure off for a while, and even though traditional medicine would call it impossible to change bony problems without surgery I am watching impossibilites fade before my eyes. Perhaps I don't have a hearing problem after all!
Dr. Tennant was also the first person to be able to explain to me why hyperbaric oxgyen therapy (HBOT) helps people in Abbie's situation. There is lots of anecdotal evidence and stories of improvement, but I could never get a grasp on what it actually did in the body to effect these changes. He told me in two short sentences. Describing something called "Bohr's Effect" he explained that there is a direct relationship between the voltage in a solution and the amount of oxygen that can be dissolved in the solution. Low voltage means low oxygen in tissues. So, while we are working to get Abbie's voltage up, HBOT would be a wonderful support for her. Once her voltage is in the normal range again, she won't need it anymore. More "dives" are on the wish list for Abbie.
I promised more about what can happen when low voltage is raised to normal ranges. I'd like to share the story of a girl whose family I referred to Dr. Tennant to help with her brain injury recovery. I haven't touched base with her mom about sharing this story yet, so I will just use her initial "S." (for "Superwoman" perhaps). I heard the highlights of the story from the mom first, so I know it happened just as Dr. Tennant described it to me. S. came to his clinic in a wheelchair with her right arm drawn up, her head hanging down, she wasn't talking or initiating any movement on her own. She would occasionally follow commands like "open your mouth". They tested her with the MEAD device and found that her voltage was around 7, well below the normal of 20. They gave her some I.V. therapy and treatment with a specialized light diode for 45 minutes. They then wheeled her to the front desk so her mother could book appointments for the remaining three days of their stay in Dallas. At that point S. stood up out of her wheelchair. When they tested her voltage two days later it was at 20, and S. was walking around the halls unassisted. That's how powerfully a change in voltage can manifest, and how quickly the changes come. S. only stayed for four days, and at the end of the stay Dr. Tennant went out to eat with her and her family. There was a park bench in the restaurant with a cut-out in the wall that opened into another eating area. S. was so curious she climbed up on the bench to have a look. Dr. Tennant now recommends a 2-week treatment course at the clinic to see the best results. He is also seeing astounding changes in kids with autism. He told me that the newest versions of the light diode are one week old and about 10 times as powerful as what S. was treated with. The possibilities for recovery are mind-staggering, and like I said, they bring our vague but stubborn hope into the realm of definate potential. Suffice to say, a trip to Dallas is on my wish list for Abbie.
The story about S. brings up the new light diode, a truly cutting edge device that uses light to carry frequencies into the body. There exist just a few prototypes of the light, but from S's story you can understand the impact they will have. Please pray for Dr. Tennant as he moves forward to get these through the FDA approval process. Pray that God would show favor in every way to speed this process -- there are so many of us waiting for hope to become reality. I cannot do justice in describing Dr. Tennant, but he has a true heart of compassion, is completely dedicated to his mission, and possesses a brilliance shared by few. God has chosen him to be a world-changer, and that is a very difficult path to travel.
So, I think that pretty well sums up our last week. Can you see why I've had some sleepless nights lately? Not checking on alarms or giving nebulizer treatments, but rather tossing around in bed realizing that I really am going to get my girl back. I really, really am!!! Praise God from Whom all blessings flow, especially the unfathomable ones.
As many of you know, Dr. Jerry Tennant was in town last week to give a lecture and training seminar. We have been working with his device, the Biomodulator, for about a year now and credit much of Abbie's gains to it. But, truthfully, Dr. Tennant has given us much more than a device, he has given us a whole new paradigm about how to practice medicine and how to restore wellness.
He is a man that people fly from all over the world to meet and we were fortunate enough to have an extended period of time with him to discuss Abbie. That fact alone still overwhelms me. But, through his gracious sharing of his time, knowledge and the use of some new tests we have a whole new insight into what is going on with Abbie, and most importantly we now have a roadmap for the way back!!
This is going to be a lengthy update, but I believe it is the most important and most hopeful one I may ever write. God has long promised me, in the dark of the night when I've been crying, that this journey is so much bigger than I can see, and it will end up so much better than I can imagine. Now I have a glimpse, and He is so true to His Word.
Last week we were able to use something called a MEAD device to do a test called a "Nakatani" on Abbie. In three minutes this device gave us the voltage readings for all of Abbie's organs as well as her total body voltage. Normal body voltage is around 20 millivolts. Since we've been working with the Biomodulator and watching her diet for a year I was curious and hopeful about what we would see. The results came up on the laptop screen and my jaw dropped...2. Two measly millivolts is all the energy Abbie is running on. This is not enough for her organs to even function properly, let alone allow her to heal. It also helps explain why her stoma is open 17 months after decannulation -- she literally does not have the energy to heal it. I was heartbroken at first, and could not understand how this could be. I was also bursting with pride about my girl, who has been showing us great things solely through the strength of her will and heart. As Dr. Tennant put it, "She is obviously very motivated!"
The reason for her low voltage, however, has given us great hope because it is entirely fixable. The body stores voltage in the cell membranes, which are made entirely of fat. Abbie's liver is not functioning right now, so it is not producing bile, which is necessary to break down fat for digestion. The good fats I've been giving her have either been going right through her or have been coming back up as she coughs and vomits. Since she can't digest fats, her body doesn't have the building materials for good cell membranes, so she has no voltage storage capacity. The energy we put into her runs right out, which explains her chronic low voltage.
We are going to fix this by giving Abbie digestive supplements: Betaine, Ox bile, Digestabs, and a probiotic. We are also going to radically change her diet. For the forseeable future Abbie's diet will consist entirely of raw milk, eggs, marine phytoplankton, Vitamin C, and silicon. I must admit I had a questioning look on my face when that diet was proposed. But, raw milk, eggs and plankton are the only 3 complete foods on the planet...they each have everything needed for life in the proper ratios. Why silicon? Because it is a powerful electron donor, meaning it has energy to give, with a pH of 12. The other unique property of silicon is that if it is ingested with an appropriate probiotic is has the ability to transmutate into other minerals the body needs, like calcium. The neat thing about that is that only the amount the body needs will be transmutated, so we don't have to worry about overloading on something like calcium. The biggest thing we are trying to accomplish is to get five pounds of good fat into Abbie in the next 2 months. The liver is composed entirely of fat, and completely replaces itself every 6-8 weeks. The brain is also made mostly of fat, although it's replacement cycle is about 8 months. The good fats will help Abbie rebuild healthy organs as well as healthy cell membranes so she can hold onto the voltage we give her. The skin also has about a 6 week replacement cycle, so we are hopeful that in about 6-8 weeks, as she has a better a better liver and healthier skin we will really be able to get her voltage up and will see great changes. More about that later.
One word about raw milk, since I know there of some who gasped when I wrote that. Yes, it is safe. If bacteria grows in raw milk, it's gone in about 36 hours, if it grows in pasteurized milk it keeps multiplying. Raw milk is so powerful because it is a living food -- the enzymes haven't been killed by pastuerization. This allows even lactose intolerant people to drink it, because it still contains the lactase necessary for digestion. The fats in raw milk are intact, they haven't been shattered by homogenization, which is important when trying to build good cell membranes, in the same way as not wanting to build a windshield out of little shards of glass. It is illegal to buy or sell raw milk in Hawaii, so I've ordered some from California (I had to pay much more for shipping than for the milk.) But, if there is anyone on Oahu who has grass-fed cows or goats, or is willing to keep one, PLEASE contact me. This may be the most crucial element in determining how fast we can help Abbie get better. Dr. Tennant told me that his patients who go on raw milk get better in about half the time as those who don't.
We discussed what Abbie's low voltage means for things like a Botox procedure or a hip surgery. With a voltage as low as Abbies, and a liver unable to metabolize the anesthetic and the drugs all surgeries are now off the table, especially the hip procedure. To put her through a surgery that drastic with a voltage as low as hers would be extremely risky. I must say I am a little relieved, and recalled the recent struggle I'd been having with a promise I truly believed God had given me. When the hip procedure was first discussed I came home and wept, then opened my Bible. A verse I'd never noticed before stood out boldly to me and promised that "not one of her bones shall be broken." I claimed that for Abbie and was certain she wouldn't have to have the hip surgery. After looking at her hip films at a recent Shriner's appointment, and concluding that hip surgery was unavoidable, I really wondered how I had misheard God, wondered if I'd inserted my own desires into His mouth, wondered if I could trust myself to hear anything at all. All we have recently learned has put this procedure off for a while, and even though traditional medicine would call it impossible to change bony problems without surgery I am watching impossibilites fade before my eyes. Perhaps I don't have a hearing problem after all!
Dr. Tennant was also the first person to be able to explain to me why hyperbaric oxgyen therapy (HBOT) helps people in Abbie's situation. There is lots of anecdotal evidence and stories of improvement, but I could never get a grasp on what it actually did in the body to effect these changes. He told me in two short sentences. Describing something called "Bohr's Effect" he explained that there is a direct relationship between the voltage in a solution and the amount of oxygen that can be dissolved in the solution. Low voltage means low oxygen in tissues. So, while we are working to get Abbie's voltage up, HBOT would be a wonderful support for her. Once her voltage is in the normal range again, she won't need it anymore. More "dives" are on the wish list for Abbie.
I promised more about what can happen when low voltage is raised to normal ranges. I'd like to share the story of a girl whose family I referred to Dr. Tennant to help with her brain injury recovery. I haven't touched base with her mom about sharing this story yet, so I will just use her initial "S." (for "Superwoman" perhaps). I heard the highlights of the story from the mom first, so I know it happened just as Dr. Tennant described it to me. S. came to his clinic in a wheelchair with her right arm drawn up, her head hanging down, she wasn't talking or initiating any movement on her own. She would occasionally follow commands like "open your mouth". They tested her with the MEAD device and found that her voltage was around 7, well below the normal of 20. They gave her some I.V. therapy and treatment with a specialized light diode for 45 minutes. They then wheeled her to the front desk so her mother could book appointments for the remaining three days of their stay in Dallas. At that point S. stood up out of her wheelchair. When they tested her voltage two days later it was at 20, and S. was walking around the halls unassisted. That's how powerfully a change in voltage can manifest, and how quickly the changes come. S. only stayed for four days, and at the end of the stay Dr. Tennant went out to eat with her and her family. There was a park bench in the restaurant with a cut-out in the wall that opened into another eating area. S. was so curious she climbed up on the bench to have a look. Dr. Tennant now recommends a 2-week treatment course at the clinic to see the best results. He is also seeing astounding changes in kids with autism. He told me that the newest versions of the light diode are one week old and about 10 times as powerful as what S. was treated with. The possibilities for recovery are mind-staggering, and like I said, they bring our vague but stubborn hope into the realm of definate potential. Suffice to say, a trip to Dallas is on my wish list for Abbie.
The story about S. brings up the new light diode, a truly cutting edge device that uses light to carry frequencies into the body. There exist just a few prototypes of the light, but from S's story you can understand the impact they will have. Please pray for Dr. Tennant as he moves forward to get these through the FDA approval process. Pray that God would show favor in every way to speed this process -- there are so many of us waiting for hope to become reality. I cannot do justice in describing Dr. Tennant, but he has a true heart of compassion, is completely dedicated to his mission, and possesses a brilliance shared by few. God has chosen him to be a world-changer, and that is a very difficult path to travel.
So, I think that pretty well sums up our last week. Can you see why I've had some sleepless nights lately? Not checking on alarms or giving nebulizer treatments, but rather tossing around in bed realizing that I really am going to get my girl back. I really, really am!!! Praise God from Whom all blessings flow, especially the unfathomable ones.
Friday, August 18, 2006
Everything's OK
It's been a while since I've posted, and I just want to let you know that all is well. In fact, it is great! Abbie was very vocal this morning, and kept it up during PT. She was also goofing around with us, being a little bit of a rascal. Lynette (PT) finally asked, "What did you do to her, this is a different girl than I saw last week." There is an answer to that question, but it requires more time to explain than I right now...unfathomable blessings have come our way this week, and I will have time to write about them extensively on Monday. Suffice to say, the vague but firm hope that I have held all this time, that there is a way back for Abbie, has come into sharp relief and definate reality. Like I said, unfathomable...
Crystal just gave me an update on Abbie's evening. After running to PT and the neurologist today (where for the first time she actually let Dr. O. see her do something), Abbie slept all evening. But, Crystal said she was "laughing in her sleep." Surprised, I questioned her about this. "Yes," she confirmed, "laughing. You could totally hear a 'ha', then she would stop and just smile a huge smile." I think in her dreams Abbie is getting a preview of things that are coming, and I am joining in her joyful laughter.
No matter how long it takes, love always wins!!!
Crystal just gave me an update on Abbie's evening. After running to PT and the neurologist today (where for the first time she actually let Dr. O. see her do something), Abbie slept all evening. But, Crystal said she was "laughing in her sleep." Surprised, I questioned her about this. "Yes," she confirmed, "laughing. You could totally hear a 'ha', then she would stop and just smile a huge smile." I think in her dreams Abbie is getting a preview of things that are coming, and I am joining in her joyful laughter.
No matter how long it takes, love always wins!!!
Thursday, August 10, 2006
Double A
"AA", "Double-A", Awesome Abbie! It has been an amazing day, and it's only lunchtime!
Abbie woke up with smiles and in a good mood, so I knew we were going to have a pleasant day. In the bathtub she was so relaxed and really enjoyed the massage I gave her as the jets bubbled the water around her. I always wash her hair in the sink because it's easier to keep water out of her still-open trach stoma. As I laid her on the counter, her little legs started going. It's not unusual to get a left-right-left (or vice versa) movement in her legs, but three lifts in a row is about all she will do. Until today. She looked like she was going to walk off the counter, I lost count of how many times in a row she'd lift alternating legs, with her hips rotating a little as well. She would stop and grin at me, as if to say "Do you see what I'm doing??" I would heap the praise and admiration on her, and we'd start the whole cycle again. She must've done at least six rounds of leg lifting, and I was giggling with joy by the time her hair was washed.
I brought her to the family room to massage her and get her dressed for PT. I sat her up to put her hair in a pony tail, and was busy brushing it when I realized she was sitting up, holding her head straight and still for me as I brushed. It was so normal!!! I was using both my hands to fix her hair, instead of having to support or balance her. Even just one moment of doing something the way we used to has a sweetness I can't describe. (Trust me, I sat here for a while trying to think of the words, and can't find any)
On the way to therapy I just felt like everything has changed somehow...my thought was. "this feels like a prayer has been answered that I didn't even know I prayed. I don't even know what I prayed for specifically, but God has answered."
Excited words tumbled out of my mouth as soon as Lynette came into the PT room. We decided to work on the recently-set goal of Abbie helping with transitions from sitting to standing, or helping with her legs when being lifted out of her wheelchair. Step one is making sure she can bend her knees so she can put weight through her legs and feet. Lynette sat her on a bolster, and held her from behind while I had knee and foot duty in the front. It didn't take long for me to get her feet flat on the floor and her knees bent to about 90 degrees. Then Lynette helped Abbie to reach down and touch her toes. I am so glad she still has the flexibility to do things like that.
Since she did so well, we wanted to take it to the next step - seeing if she could bend her knees on her own. This requires her to work against the high muscle tone in her quads and has never been easy for her. I lifted her thigh off the bolster and told her to bend her own knee...slowly, slowly she began doing it. The more repetitions we did the further and faster she went. She bent them until her feet touched the floor on their own! Much, much more than we were expecting to see.
We noticed that when she wanted a break Abbie would straighten her legs. So, since it was such a great day already, we decided to push it a little farther. While her knees were bent we asked her to straighten her legs...she did...then we asked her to find the floor with her feet again...and she did! She was following the commands so quickly!!! She did this a few more times when we asked her to. I silenced my yelp of joy, so I was looking at Lynette with my mouth agape, when she said, "I am about to cry!" That's a sure sign it's been a great day in therapy!!!
Abbie's body is starting to listen to her more and more, and her cognition is more easily displayed through her movements now. So thrilling for me, and I can assure you, she is quite proud of herself!
After PT I took Abbie to the cafeteria to feed her and get some lunch myself. As I returned to the table with my tray, the truth hit me. All this isn't an answer to some unknown prayer I prayed, it's an answer to prayers that you have prayed for Abbie!! You have prayed for her when I 've been too tired, too sad or too discouraged. You've prayed for her when I couldn't find new words and couldn't bear to repeat the old ones. You've prayed in faith when mine was flickering. You have prayed in hope on days when I was focused on doom-and-gloom tests. You have prayed in joy during times I felt my heart was shattered. You have prayed with perseverance and persistence even though many of you have never had the chance to meet or hold Abbie. I wish you could see what my eyes witnessed today, and feel what my heart felt...because YOU are the reason that my sweet girl is smiling with satisfaction and pride. "Mahalo" will never be enough, but I say it with all my heart!
Abbie woke up with smiles and in a good mood, so I knew we were going to have a pleasant day. In the bathtub she was so relaxed and really enjoyed the massage I gave her as the jets bubbled the water around her. I always wash her hair in the sink because it's easier to keep water out of her still-open trach stoma. As I laid her on the counter, her little legs started going. It's not unusual to get a left-right-left (or vice versa) movement in her legs, but three lifts in a row is about all she will do. Until today. She looked like she was going to walk off the counter, I lost count of how many times in a row she'd lift alternating legs, with her hips rotating a little as well. She would stop and grin at me, as if to say "Do you see what I'm doing??" I would heap the praise and admiration on her, and we'd start the whole cycle again. She must've done at least six rounds of leg lifting, and I was giggling with joy by the time her hair was washed.
I brought her to the family room to massage her and get her dressed for PT. I sat her up to put her hair in a pony tail, and was busy brushing it when I realized she was sitting up, holding her head straight and still for me as I brushed. It was so normal!!! I was using both my hands to fix her hair, instead of having to support or balance her. Even just one moment of doing something the way we used to has a sweetness I can't describe. (Trust me, I sat here for a while trying to think of the words, and can't find any)
On the way to therapy I just felt like everything has changed somehow...my thought was. "this feels like a prayer has been answered that I didn't even know I prayed. I don't even know what I prayed for specifically, but God has answered."
Excited words tumbled out of my mouth as soon as Lynette came into the PT room. We decided to work on the recently-set goal of Abbie helping with transitions from sitting to standing, or helping with her legs when being lifted out of her wheelchair. Step one is making sure she can bend her knees so she can put weight through her legs and feet. Lynette sat her on a bolster, and held her from behind while I had knee and foot duty in the front. It didn't take long for me to get her feet flat on the floor and her knees bent to about 90 degrees. Then Lynette helped Abbie to reach down and touch her toes. I am so glad she still has the flexibility to do things like that.
Since she did so well, we wanted to take it to the next step - seeing if she could bend her knees on her own. This requires her to work against the high muscle tone in her quads and has never been easy for her. I lifted her thigh off the bolster and told her to bend her own knee...slowly, slowly she began doing it. The more repetitions we did the further and faster she went. She bent them until her feet touched the floor on their own! Much, much more than we were expecting to see.
We noticed that when she wanted a break Abbie would straighten her legs. So, since it was such a great day already, we decided to push it a little farther. While her knees were bent we asked her to straighten her legs...she did...then we asked her to find the floor with her feet again...and she did! She was following the commands so quickly!!! She did this a few more times when we asked her to. I silenced my yelp of joy, so I was looking at Lynette with my mouth agape, when she said, "I am about to cry!" That's a sure sign it's been a great day in therapy!!!
Abbie's body is starting to listen to her more and more, and her cognition is more easily displayed through her movements now. So thrilling for me, and I can assure you, she is quite proud of herself!
After PT I took Abbie to the cafeteria to feed her and get some lunch myself. As I returned to the table with my tray, the truth hit me. All this isn't an answer to some unknown prayer I prayed, it's an answer to prayers that you have prayed for Abbie!! You have prayed for her when I 've been too tired, too sad or too discouraged. You've prayed for her when I couldn't find new words and couldn't bear to repeat the old ones. You've prayed in faith when mine was flickering. You have prayed in hope on days when I was focused on doom-and-gloom tests. You have prayed in joy during times I felt my heart was shattered. You have prayed with perseverance and persistence even though many of you have never had the chance to meet or hold Abbie. I wish you could see what my eyes witnessed today, and feel what my heart felt...because YOU are the reason that my sweet girl is smiling with satisfaction and pride. "Mahalo" will never be enough, but I say it with all my heart!
Tuesday, August 08, 2006
Plugging Away
That's about where I am at right now...just plugging away, trying to do what I think Abbie needs, and usually feeling at the end of the day like I didn't get 50% accomplished of what I'd hoped to do.
It's easy to let a feeling of defeat sneak up on me, and it has me down on the mat before I even realize it's laid its hands on me. The one sure antidote is spending time alone reading the Bible. Thankfully, we have a nurse today, so I was able to read my Psalms cycle and saw some amazing things.
I started in Psalm 8 and read the familiar verse that says, "From the lips of children and infants you have ordained praise..." How often I have envisioned praise pouring out of Abbie's lips. That picture is an anchor for me. But, the rest of the verse goes on to say, "...because of your enemies, to silence the foe and the avenger." The praise of the littlest ones is ordained to silence the enemy -- God trusts in the power of children's praise to do a mighty thing, and so do I. The prayers and praise of Abbie's little friends all over the world are doing a powerful work in Abbie's life and restoring her to health. Please, tell your children what a difference they are making for Abbie - -she is really depending on them to keep talking to Jesus about her when they pray and to continue praising His Name with their words and lives.
She was a little sleepy at therapy yesterday after waking early in the morning. But, she still did things to encourage us. We were working on rolling, and she'd gotten onto her tummy. I told her that she could choose which way to go from there, and she immediately lifted her left hip. I've been spending much time lately researching therapy options, both for Abbie and for the Hope Program. While it's exciting to see things we've not yet tried, it can also be exhausting to reason through what would be best for her and what we can realistically do. Please pray for wisdom through this ever-continuing process.
It's easy to let a feeling of defeat sneak up on me, and it has me down on the mat before I even realize it's laid its hands on me. The one sure antidote is spending time alone reading the Bible. Thankfully, we have a nurse today, so I was able to read my Psalms cycle and saw some amazing things.
I started in Psalm 8 and read the familiar verse that says, "From the lips of children and infants you have ordained praise..." How often I have envisioned praise pouring out of Abbie's lips. That picture is an anchor for me. But, the rest of the verse goes on to say, "...because of your enemies, to silence the foe and the avenger." The praise of the littlest ones is ordained to silence the enemy -- God trusts in the power of children's praise to do a mighty thing, and so do I. The prayers and praise of Abbie's little friends all over the world are doing a powerful work in Abbie's life and restoring her to health. Please, tell your children what a difference they are making for Abbie - -she is really depending on them to keep talking to Jesus about her when they pray and to continue praising His Name with their words and lives.
She was a little sleepy at therapy yesterday after waking early in the morning. But, she still did things to encourage us. We were working on rolling, and she'd gotten onto her tummy. I told her that she could choose which way to go from there, and she immediately lifted her left hip. I've been spending much time lately researching therapy options, both for Abbie and for the Hope Program. While it's exciting to see things we've not yet tried, it can also be exhausting to reason through what would be best for her and what we can realistically do. Please pray for wisdom through this ever-continuing process.
Praise be to the Lord, to God our Savior,
who daily bears our burdens.
Our God is a God who saves;
from the Sovereign Lord comes escape from death
-- Psalm 68:19-20
Sunday, August 06, 2006
Bouncing Back
Our little Superball of a girl has bounced back amazingly. We took her off the oxgygen last night and watched her sleep with sats of 98, even as her heart rate dropped into the 80s. She has continued to be strong today, and is back to her happy self. She's slept a bit more than usual tonight, but she awoke both of us with a big messy diaper that required a complete bedding change at 5am.
I visited Luke's site last night (www.howsluke.blogspot.com) to see how he is doing, as he is currently fighting something respiratory as well..please pray for him. His mom, Sue has posted a prayer request for a little girl named Gabby, saying only a miracle will save her at this point. Of course, I then went to Gabby's site, www.gabbysmiracle.blogspot.com to read about her courageous fight against a virulent, inoperable brain tumor. Please go visit and pray for her and her family. I want to share something her family wrote that encouraged me to remember with gladness and comfort just Who we are depending upon.
"This situation is not over yet, for we serve Jehovah Rophe, the Lord our Healer. He is my strong tower, He makes the hills shake, the mountains melt and the heavens bow. His love has no limits, His grace has no measure, His power has no boundries known unto man. He is my shield, my defender, my rock and refuge and He hides me under the shadow of His wings. He was the Ancient of days before the first day began, He was the rock of ages before any mountain peaks were formed and He was the lily of the valley before there were any flowers on earth.
Let me tell you about His voice, His voice is powerful upon the waters, full of majesty, like thunder, it breaks the cedars, sets the mountains in their place and it stills the sea. His voice shook the earth and melted the hills. He spoke and the heavens unrolled themselves and the galaxies were born... violets cast their fragrance, the birds began to sing... colors wove themselves into a rainbow. He spoke and a handful of dust became a living soul. He spoke and calmed the storm, He spoke and gave life to the dead, brought healing to the sick, strength to the weak and cleansing to the leper. He spoke and brought hearing to the deaf and sight to the blind.
Sickness could not withstand Him, Devils could not stay near Him and the waves could not drown Him. Death could not corrupt Him, hell could not keep Him and the grave could not contain Him. God has highly exalted Him and given Him a Name above every other name even the name of cancer. He is mighty in battle and He is the Lion of Judah..... His name is Jesus."
I visited Luke's site last night (www.howsluke.blogspot.com) to see how he is doing, as he is currently fighting something respiratory as well..please pray for him. His mom, Sue has posted a prayer request for a little girl named Gabby, saying only a miracle will save her at this point. Of course, I then went to Gabby's site, www.gabbysmiracle.blogspot.com to read about her courageous fight against a virulent, inoperable brain tumor. Please go visit and pray for her and her family. I want to share something her family wrote that encouraged me to remember with gladness and comfort just Who we are depending upon.
"This situation is not over yet, for we serve Jehovah Rophe, the Lord our Healer. He is my strong tower, He makes the hills shake, the mountains melt and the heavens bow. His love has no limits, His grace has no measure, His power has no boundries known unto man. He is my shield, my defender, my rock and refuge and He hides me under the shadow of His wings. He was the Ancient of days before the first day began, He was the rock of ages before any mountain peaks were formed and He was the lily of the valley before there were any flowers on earth.
Let me tell you about His voice, His voice is powerful upon the waters, full of majesty, like thunder, it breaks the cedars, sets the mountains in their place and it stills the sea. His voice shook the earth and melted the hills. He spoke and the heavens unrolled themselves and the galaxies were born... violets cast their fragrance, the birds began to sing... colors wove themselves into a rainbow. He spoke and a handful of dust became a living soul. He spoke and calmed the storm, He spoke and gave life to the dead, brought healing to the sick, strength to the weak and cleansing to the leper. He spoke and brought hearing to the deaf and sight to the blind.
Sickness could not withstand Him, Devils could not stay near Him and the waves could not drown Him. Death could not corrupt Him, hell could not keep Him and the grave could not contain Him. God has highly exalted Him and given Him a Name above every other name even the name of cancer. He is mighty in battle and He is the Lion of Judah..... His name is Jesus."
Saturday, August 05, 2006
Please Pray!
Yesterday Abbie had a pretty quiet, uneventful day until her nurse, Corrie, check her O2 sats at 6:30pm. Abbie had been at her usual 96-99%, but suddenly she was at 84%. Corrie moved the probe to her other toe and to her fingers, and then checked the probe on her own finger to ensure it was working properly (it was). So, she started Abbie on 1 liter of oxygen and had to bump it up to 1.5 fairly soon.
When I got home at 6:45 Abbie was resting comfortably, but still only satting 93-95 even with the oxgyen. She didn't have a fever, her chest sounded clear, and she wasn't coughing, so we were stumped. Not having a clue what might be causing this rapid change, I pulled out my secret weapon, the Biomodulator, and went to work. After about 20 minutes of treatment we lowered the oxygen to 1 liter, with Abbie satting 97-99. We kept the O2 on all night just to be safe, and have used it most of the day today. Abbie seems really tired, but still has no fever or chest congestion. Please just pray she can overcome this quickly!
On Thursday night our family was abundantly blessed with a meal prepared by the Cheshire family...we had a mid-week holiday!! Roast turkey, amazing stuffing, homemade bread, potatoes, and yummy dessert. I usually decline offers like theirs, perhaps more often then I should, but with the scarcity of nursing this month I gratefully accepted. The only problem, as I told Katie, was that my family may not want me to cook for them anymore. I am humbled that over two years after the beginning of this journey we still have so many companions with tender, thoughtful hearts...I cannot adequately express our gratitude.
A follow up to postings earlier this summer... Abbie's big Marine friend Ben continues his miraculous recovery from a traumatic brain injury. His wife, Carissa, recently gave birth to their first child and Ben was able to be with her through the entire process -- chalk up another answered prayer!
On Thursday night Chase was helping me put Abbie to bed, and began goofing around with her. Not good for settling in for a good night sleep, but it was too fun to watch for me to stop them. For the first time I saw her true pirate smile again. The kind that says "I am about to do something naughty but I'm too cute to get into trouble." She used that smile a lot the first 2.5 years of her life. By the time I banished him from the bedroom, Chase had Abbie laughing. Those moments make all the difficult ones fall to the ground and shatter into dust.
When I got home at 6:45 Abbie was resting comfortably, but still only satting 93-95 even with the oxgyen. She didn't have a fever, her chest sounded clear, and she wasn't coughing, so we were stumped. Not having a clue what might be causing this rapid change, I pulled out my secret weapon, the Biomodulator, and went to work. After about 20 minutes of treatment we lowered the oxygen to 1 liter, with Abbie satting 97-99. We kept the O2 on all night just to be safe, and have used it most of the day today. Abbie seems really tired, but still has no fever or chest congestion. Please just pray she can overcome this quickly!
On Thursday night our family was abundantly blessed with a meal prepared by the Cheshire family...we had a mid-week holiday!! Roast turkey, amazing stuffing, homemade bread, potatoes, and yummy dessert. I usually decline offers like theirs, perhaps more often then I should, but with the scarcity of nursing this month I gratefully accepted. The only problem, as I told Katie, was that my family may not want me to cook for them anymore. I am humbled that over two years after the beginning of this journey we still have so many companions with tender, thoughtful hearts...I cannot adequately express our gratitude.
A follow up to postings earlier this summer... Abbie's big Marine friend Ben continues his miraculous recovery from a traumatic brain injury. His wife, Carissa, recently gave birth to their first child and Ben was able to be with her through the entire process -- chalk up another answered prayer!
On Thursday night Chase was helping me put Abbie to bed, and began goofing around with her. Not good for settling in for a good night sleep, but it was too fun to watch for me to stop them. For the first time I saw her true pirate smile again. The kind that says "I am about to do something naughty but I'm too cute to get into trouble." She used that smile a lot the first 2.5 years of her life. By the time I banished him from the bedroom, Chase had Abbie laughing. Those moments make all the difficult ones fall to the ground and shatter into dust.
Thursday, August 03, 2006
Watch This!!
Recently my friend, Betsy Dillon, Ross' mom, sent me a link to a segment of the Charlie Rose show. Charlie had three guests who discussed the case of Terry Wallis, the man who, within a 72-hour period, regained normal speech after 19 years in a minimally conscious state following a traumatic brain injury. The bottom line, according to his guests, is that brains are NOT static after an injury, and that we have GOT to give them a chance to heal and support them as they do. Hurrah!!! Scientists and physicians saying what I and my fellow M.O.M.s (Mothers of Miracles) have known all along. See for yourself...http://video.google.com/videosearch?q=tvshow%3ACharlie_Rose&so=1
Abbie had an "on" day yesterday, which was great since I was orienting a new nurse. Tracy gave me a bit of a surprised look when I told her that Abbie can understand everything we say. I guess Abbie took that as a challenge because she was quite talkative the rest of the day, both with her switch and her voice. She told Tracy "go, go, go" when she needed to use the toilet, and said "hungry"clearly enough to be understood even though it was an hour until feeding time. In the morning she started working on the "D" sound, which is fairly new. I told her this would allow her to say "Dad", which made her smile, so we worked on it a while. In the evening, she was watching a video about letters, and the song playing said, "The A says 'a' the A says 'a'" I asked Abbie if she could say that and she began to mimic with her mouth but no sounds came out. It was interesting, though, that her mouth moved in time with the music, so I do think it was purposeful.
She has been very responsive to her brothers lately, and more and more we are able to get her to smile just by telling her jokes or saying silly things. This, in turn, motivates them all the more -- they are quickly becoming her travelling troupe of clowns.
Her face continues to change, but it is hard to quantify. Her lips are returning to normal, which cuts down on the drooling since her bottom lip can stay up better. Her vision also seems to have improved this week. Her eyes alway move in synch now, and are moving much more quickly, especially when she wants to look at people. She did great with her sight word flash cards yesterday, and we saw tracking about half the time.
For those of you in the Colorado area, I want to pass on part of an email I got this morning...Dr. Tennant will be offering his course training on his Tennant BioModulator Oct. 26-28 in Denver, CO. We need 7 more people to register asap to assure this class takes place. Please call Barbara Forsberg to register at: 972-580-0545. Let her know who referred you to the course.
This course will surely bless you if you are able to attend!
One other HUGE praise...I met Matthew and RJ's teacher yesterday (Kyle and the twins started school on 7/29). He is a wonderful, enthusiastic Christian man -- I could just see in his face the excitement he has about his class. They only have 11 kids in their class, including 9 boys -- can you imagine that ratio for a fourth grade class?? WOW! My heart is so much happier, having them in such a wonderful environment, in a small class, with a caring male teacher -- God is so good! I will always wish I could have them at home again, but I know they will be well trained and taught this year, and that eases my burden greatly. Matthew also brought home his cello for the first time yesterday, and I grinned to see the pride and anticipation on his face. This is going to be a terrific year for them!
Abbie had an "on" day yesterday, which was great since I was orienting a new nurse. Tracy gave me a bit of a surprised look when I told her that Abbie can understand everything we say. I guess Abbie took that as a challenge because she was quite talkative the rest of the day, both with her switch and her voice. She told Tracy "go, go, go" when she needed to use the toilet, and said "hungry"clearly enough to be understood even though it was an hour until feeding time. In the morning she started working on the "D" sound, which is fairly new. I told her this would allow her to say "Dad", which made her smile, so we worked on it a while. In the evening, she was watching a video about letters, and the song playing said, "The A says 'a' the A says 'a'" I asked Abbie if she could say that and she began to mimic with her mouth but no sounds came out. It was interesting, though, that her mouth moved in time with the music, so I do think it was purposeful.
She has been very responsive to her brothers lately, and more and more we are able to get her to smile just by telling her jokes or saying silly things. This, in turn, motivates them all the more -- they are quickly becoming her travelling troupe of clowns.
Her face continues to change, but it is hard to quantify. Her lips are returning to normal, which cuts down on the drooling since her bottom lip can stay up better. Her vision also seems to have improved this week. Her eyes alway move in synch now, and are moving much more quickly, especially when she wants to look at people. She did great with her sight word flash cards yesterday, and we saw tracking about half the time.
For those of you in the Colorado area, I want to pass on part of an email I got this morning...Dr. Tennant will be offering his course training on his Tennant BioModulator Oct. 26-28 in Denver, CO. We need 7 more people to register asap to assure this class takes place. Please call Barbara Forsberg to register at: 972-580-0545. Let her know who referred you to the course.
This course will surely bless you if you are able to attend!
One other HUGE praise...I met Matthew and RJ's teacher yesterday (Kyle and the twins started school on 7/29). He is a wonderful, enthusiastic Christian man -- I could just see in his face the excitement he has about his class. They only have 11 kids in their class, including 9 boys -- can you imagine that ratio for a fourth grade class?? WOW! My heart is so much happier, having them in such a wonderful environment, in a small class, with a caring male teacher -- God is so good! I will always wish I could have them at home again, but I know they will be well trained and taught this year, and that eases my burden greatly. Matthew also brought home his cello for the first time yesterday, and I grinned to see the pride and anticipation on his face. This is going to be a terrific year for them!
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