I had fun running around this morning getting to be a mom to my boys. It was "Thanksgiving Feast" day at Kyle and the twins' school. So, I made some chicken enchiladas (it was an "ethnic" feast) and picked up pizza. It was the luckiest day for Chase to forget lunch money because I took him a plate loaded with food from the feasting tables. We're just now getting to a point that I can really participate in school life, and I am savoring it.
I came home to give Abbie a workout with Debbie. As she was catching me up on what had happened while I was at school, Debbie said, "At one point she was having a very good dream and had a huge smile on her face. Something looked different though, and it took me a minute to figure it out. The grin was prominent on the left side of her face!" The left side is still not as animated as her right since it was affected by her late-onset brain swell. When I heard this I looked down at Abbie, who was laying on her back on the massage table, and said, "Were you dreaming about running around and causing trouble??" Instantly I got a huge grin and dimple. She was dreaming about that!! We asked her several times and each time she got that pirate smile.
At three o'clock, just as Debbie was leaving and Genevieve was arriving, Carol also arrived to give Abbie a session of Healing Touch. Carol began by praying, as always, but this time as I joined her in prayer I felt strongly that I should stay during this session instead of using the time to catch up on housework. I stood quietly by, praying, for about 10 minutes and then I had to step out of the room to help the boys. I asked Genevieve to stay in the room in case Carol should need her. As I later walked back to Abbie's room I passed the bathroom and heard Genevieve in there, sniffling. When she returned to her seat I mouthed, "Are you OK??", and she quickly nodded "yes" but I noticed she had tissue in her hand and was occasionally dabbing her eyes.
I sat in the recliner across the room and watched Abbie while I prayed. At times she responded so powerfully to Carol's gentle touch or movement of her hands. While this continued it was as if I was seeing her rise above her body. Now..don't get me wrong, I wasn't having literal visions, and this is hard to explain. But, while I could obviously still see her laying still on the table, I could also "see" her sitting up, rising, healthy and whole. I didn't say anything about this to anyone, however.
After Carol left I asked Genevieve what was the matter. She teared up again and said that while Carol was working with Abbie it was like she could see her standing up. It was so clear that she really expected that at any moment Abbie would just leap off the table and say, "Mommy!" Given what I'd just experienced, this was especially strange, in a wonderful way. All I could say was, "We are getting close now! It's right around the corner!!" This journey has stretched me in so many ways, and one of them is learning to trust that there are things to be seen with our hearts.
This evening we took the boys to a baseball game and saw many old friends. We were particularly excited to see Henry and Kathy Chun, whom we met shortly after moving here when their son played on sports teams with Kyle. Henry and I spent a lot of time at practice fields chasing toddlers; his Kobe is the same age as Abbie and they were quite a pair. I'd lived here only a couple months when I met Henry, so my ear wasn't yet attuned to the local speech patterns, and Henry is about as local as you can get. I recall having to really work hard back then to decipher some things he said, things that I now pick up without thinking about.
Anyway, tonight Henry pulled me aside and said, "When we came to see you in the hospital there was something I wanted to say to you, but I couldn't do it then. You were being so hard on yourself, and I didn't know if it would just make it worse. But, you know, kids are so fast, and life is so crazy...you know all this wasn't your fault, right...you know that? I just wanted the chance to say that to you before I died..'Thank You Jesus!'...now I have. Just like Earl, I can cross another thing off my list!" I didn't know what to say, standing there in the middle of a ridiculously noisy baseball stadium, because that felt like a huge hug from God. I think I will always feel responsible, because I was the one at home with her, but God is again telling me that although that may be true, Abbie's injury and the aftermath has been used for His purposes and there doesn't need to be any assignment of fault. I was also blessed to see how heavily this has weighed on Henry's heart. What special people God has surrounded us with!
We wish you all a terrific Thanksgiving! We will be having a peaceful holiday at home, and 24 hours may not be enough time to count all of our blessings...after all, we need to thank the Father for each of you!
Thursday, November 23, 2006
Tuesday, November 21, 2006
Special Friends
Funny thing..the day after I write about my "3am circle", I have to tap into it, although thankfully it was during daylight hours. Debbie had a plumbing issue over the weekend that resulted in an indoor sewage spill, so she had to meet the claims adjuster at her house today.
This sounds a little petty, but I had a haircut appointment that I'd already rescheduled three times, so last night I sent an emergency email to my friend Sandra, and she agreed to bring her four kids to play with Abbie while I had my locks shorn.
Having Abbie to myself in the morning gave us the chance to take a walk to the beach. It's only about 6 blocks away, and it's ridiculous how rarely we go down there. It was a beautiful, soul-reviving day, and the ocean always gives perspective, doesn't it?
I was about a block from home when I saw San's van pull up to our house. I jogged the one block (which was enough jogging for me, sad to say), and met them at the gate. Into my SuperMom phone booth, and a few minutes later I was out the door to the salon. I left with Abbie being fed on her bed, joined by Keiko who was using stuffed animals to put on a play for Abbie. I returned to find Abbie and Keiko laying side-by-side on the floor, with Keiko holding a book up and reading to Abbie. They had french-braided her hair, had her do ballet and hula with them (they agree that she likes hula even more than ballet..a local girl!), and Abbie had obviously soaked it all in. What a perfect morning for her! I wish I could bottle hours like that and give her a dose every day. Abbie is so blessed to have friends with such tender, caring hearts.
Praise God, we got a key step accomplished in the effort to obtain the stander. It was submitted 3 months ago for an approval process that was supposed to take 30 days at the max. We were expecting it to get denied, and needed it to so that we could take the next step and access a special fund for thing like standers. After the request seemingly disappeared into a black hole, and being unable to get anyone to talk to me or explain where it was, Ray got involved last week. Because of his job he has access to places that most people don't (including me). Anyway, he was told that the approval person requested more medical justification on October 11th (43 days after we first submitted the request). The vendor nor our physician ever received anything like this. Ray asked for a copy of the letter yesterday, at which time it was also sent to the vendor (apparently for the first time). Today the vendor sent a scathing letter stating that there were reams of medical justification already on file, but sent what had been requested. Shortly after this letter was faxed to the approval authority our request was denied because it is "not a covered service." WOW! It had taken them three months to figure this out?? So, we have been delayed, lied to, and run around. Without Ray's access we would still be in the dark. On the upside, we can now move forward to use waiver (special fund) monies, and hopefully the stander will be approved soon. This is the third time we've had an experience like this, and we've only made three requests for durable medical equipment. So, when the responsible parties labeled this recent snafu an "outlier", we just smiled and thought that either we are really wierd and know a lot of other really wierd families who have experienced "outlier" after "outlier", or perhaps the system is truly broken. We are hopeful, now that we have the documentation of this latest round of madness, that Ray can have a constructive conversation with the appropriate people to effect change in this important but ill-functioning system. The bottom line...ARGH!!!
At the end of the day, though, I am standing here typing with a big smile because God is so good to us, all the time. There is peace in my home (the kids are in bed), we are all healthy, and we live freely, things that I try never to take for granted.
This sounds a little petty, but I had a haircut appointment that I'd already rescheduled three times, so last night I sent an emergency email to my friend Sandra, and she agreed to bring her four kids to play with Abbie while I had my locks shorn.
Having Abbie to myself in the morning gave us the chance to take a walk to the beach. It's only about 6 blocks away, and it's ridiculous how rarely we go down there. It was a beautiful, soul-reviving day, and the ocean always gives perspective, doesn't it?
I was about a block from home when I saw San's van pull up to our house. I jogged the one block (which was enough jogging for me, sad to say), and met them at the gate. Into my SuperMom phone booth, and a few minutes later I was out the door to the salon. I left with Abbie being fed on her bed, joined by Keiko who was using stuffed animals to put on a play for Abbie. I returned to find Abbie and Keiko laying side-by-side on the floor, with Keiko holding a book up and reading to Abbie. They had french-braided her hair, had her do ballet and hula with them (they agree that she likes hula even more than ballet..a local girl!), and Abbie had obviously soaked it all in. What a perfect morning for her! I wish I could bottle hours like that and give her a dose every day. Abbie is so blessed to have friends with such tender, caring hearts.
Praise God, we got a key step accomplished in the effort to obtain the stander. It was submitted 3 months ago for an approval process that was supposed to take 30 days at the max. We were expecting it to get denied, and needed it to so that we could take the next step and access a special fund for thing like standers. After the request seemingly disappeared into a black hole, and being unable to get anyone to talk to me or explain where it was, Ray got involved last week. Because of his job he has access to places that most people don't (including me). Anyway, he was told that the approval person requested more medical justification on October 11th (43 days after we first submitted the request). The vendor nor our physician ever received anything like this. Ray asked for a copy of the letter yesterday, at which time it was also sent to the vendor (apparently for the first time). Today the vendor sent a scathing letter stating that there were reams of medical justification already on file, but sent what had been requested. Shortly after this letter was faxed to the approval authority our request was denied because it is "not a covered service." WOW! It had taken them three months to figure this out?? So, we have been delayed, lied to, and run around. Without Ray's access we would still be in the dark. On the upside, we can now move forward to use waiver (special fund) monies, and hopefully the stander will be approved soon. This is the third time we've had an experience like this, and we've only made three requests for durable medical equipment. So, when the responsible parties labeled this recent snafu an "outlier", we just smiled and thought that either we are really wierd and know a lot of other really wierd families who have experienced "outlier" after "outlier", or perhaps the system is truly broken. We are hopeful, now that we have the documentation of this latest round of madness, that Ray can have a constructive conversation with the appropriate people to effect change in this important but ill-functioning system. The bottom line...ARGH!!!
At the end of the day, though, I am standing here typing with a big smile because God is so good to us, all the time. There is peace in my home (the kids are in bed), we are all healthy, and we live freely, things that I try never to take for granted.
Monday, November 20, 2006
Marathon update
Consider the title of this update fair warning. A ton to catch up on. I was pondering just letting it slide and only giving a few highlights, but these updates are also for Abbie one day, and I want her to have the whole story.
Weds. 11/15
I was fortunate today to attend a conference called “Hilopa’a”, which in English means “to braid firmly”. The conference gathered players from all segments that impact on the lives of medically fragile or developmentally disabled individuals. In the opening remarks I was blessed and encouraged to hear about so many things that started in Hawaii, including Early Intervention and the Medical Home movement (keeping kids with their families rather than in institutions.) It renewed my hope that even from these small islands we can change things for the better.
The opening session was nearing its close when I answered my cell phone because Ray had called a number of times. I thought it would be normal logistical stuff…who’s picking up which boys etc…instead I found myself doubled over in my chair, fumbling around the tabletop for napkins to cover my sobbing face after he told me that Everett McDaniel had just come into one of Ray’s ERs and died.
Those of you who knew Everett need no explanation for my response. For those not blessed to meet him on this side of Heaven…Everett was a mountain of a man, both physically and in heart. A leader in our church, he came with the elders after midnight one evening to lay hands on Abbie in the PICU, and seeing his huge, gentle hands laid on her tiny hurting body brought me such peace. But most of all, Everett gave the best hugs ever! Between my sobs that’s all I could say to Ray, “No one give hugs like Everett.” A welcoming smile and a warm hug awaited everyone entering our church on Sunday morning. Everett taught all of us how meaningful something as simple as a hug can be.
I continued crying unabashedly down the hall to the first breakout session. A woman who had been sitting next to me when I got the call, caught up with me to give comfort. She related that she had been reading Abbie’s site since the beginning and had been so blessed. As we talked my eternal vision was renewed, and I realized that at that very moment Everett was in Heaven..wow!! I was crying selfish tears, because I was going to miss his hugs, but he was rejoicing.
Almost losing a child makes Heaven so real, and the battle to bring her back fills me with anticipation of when the fight is over, every tear is wiped away, and we enter into perfect joy. Everett’s homegoing has also made Heaven more real because now I can clearly envision who is going to be greeting me at the gates, with a warm hug, big smile and probably wearing a white-on-white Reyn Spooner shirt.
The first breakout session was informative, but I was thrilled by the second. I knew it was for me just by the title. “When Strangling Isn’t an Option: How to Work Well in Difficult Teams”. There were about 50 professionals in the room, 4 panelists, and me. I listened for quite a while about how teams can work together well, how trust is built, and how decisions can be reached. This discussion focused on the IEP process for special needs kids in schools. Finally I had to rain on the Peace and Love Parade and inject a little reality. I related our IEP experience, of not being privy to much of the information discussed away from the table, and even decisions made without our knowledge, let alone input. I remarked that because of the broken trust we had to walk away from the table and continue to home educate Abbie to this day.
The Department of Education panelist spoke and within one minute had said the word “constraints” five times. Parents needed to understand the constraints of the system, the schools are under constraints etc. This was familiar and expected, so I just let it pass. Then, an angel was revealed. He was another panelist, representing the Board of Education. He said something to the effect of “I don’t buy the ‘constraints’ thing. You need to be focusing on the needs of the kids first, and trying to figure out how to meet them.” I started crying. To hear someone in a position of influence advocate for our kids was overwhelming and unexpected. Later in the session he also remarked that there needs to be an “attitude change” at the principal and school level. He didn’t concretely express what this change referred to but it’s well understood that complex specials needs kids are seen as drains on resources who are not going to improve, and therefore are unworthy of investment. Principals have been recorded saying this to parents in IEP meetings recently, so this is more than just a perception. I left there with more hope than I’ve had in a long time, and if you ever get a chance to vote for this angel in a Board of Education election, I beg you to do so. Check the box for Garrett Toguchi, and thank God there are people like him fighting for our kids.
In the final session, God used the exercise to remind me of just how blessed I am. We had to fill out a “Natural Supports” worksheet with four concentric circles. The inner circle was the “3am circle” -- people you can call for help at three in the morning. The next circle was “good friends”, the next was “acquaintances” and finally “paid supports” I had to use just initials to fit people in my “3am” box, and still didn’t get everyone in. As we went around and shared our results, I found out that I was almost the only one in the room with anyone except immediate family in the inner circle. I didn’t even work on circles 2 and 3 because again, there were just too many names. This was inconceivable to everyone around me, and made me realize anew how God is carrying us through this – with your hands!
The other thing it made me think is to ask each of you, wherever you are, if you would reach out to a family with a special needs child. Understand that they may not return phone calls often, if ever. This isn’t lack of desire, or flakiness, it’s just sometimes impossible. Simple kindnesses are profound to a family that may feel isolated. Stop and talk to them when you see them out and about, encourage your kids to interact with theirs, don’t be afraid to ask questions, find a way to include them. These things have made all the difference to us, and to Abbie. You may one day find yourself in someone’s “3am circle” and will be blessed because of it.
Thurs. 11/16:
Abbie’s tone had been a little higher lately, so I really didn’t know what to expect at PT. We decided to try to get her on hands and knees with the sling again. We raised her a little, but her knees weren’t wanting to bend much. I tried to keep my spirits up by focusing on how well she was doing with her hands, arms and head. Even though it didn’t look like we could get into a true crawling position we decided to raise the sling anway. Once it was at a height to allow her knees to bend to 90 degrees they just melted into the mat, simple as that. We ended up having a terrific session, and at the end I was relating highlights of the Hilopa’a conference to Lynette and Patty. One takeaway point was to ensure we celebrate victories, no matter how small. Lynette looked at me and said, “Well, today is definitely a session worth celebrating.” I grinned at that, because it’s sometimes hard for me to judge what is a good session and what is a great one. I am so proud of Abbie!
Friday, 11/17:
Another little vomiting episode impacted Abbie’s sats in the morning and made her participation in the afternoon Speech group questionable. I laid down to take an early afternoon nap and awoke to find Abbie in her wheelchair, all set to go. When I asked Debbie if we should go to speech, Abbie hit her switch, blinked her eyes, raised her legs, and in all ways available, shouted, “YES!” So, with her sat rates good, we took off.
These sessions are a real respite for me, because while Abbie is enjoying her friends and doing good speech work, I get a break and some time to spend with other parents. We chattered away the hour-and-a-half in the snap of a finger, and then went down the hall to collect our group of singer/artist/reader kids. The therapists were raving about how responsive and engaged Abbie was – they have really seen changes in her these past two months. They were doing a painting project and Abbie didn’t much care about it until she noticed what a mess it was making on the therapists' hands, then she couldn’t get enough. A great afternoon!
Saturday, 11/18:
Another little peek into Abbie’s personality that confirms she is the same rascally girl. Ray noticed that every time I said the word “nebulizer” she would have a little cough. Not a productive one, and not one that took much effort, just a little one. Just as I was preparing to actually give her a nebulizer I said the word again, and she gave her little cough again. Ray said, “Abbie, even if you cough you still have to have a nebulizer.” Out came her little dimple. Busted!!! She’d been trying to get out of the neb treatment by faking coughs, because we always tell her they help her have big coughs and clear her chest. Ray and I both recalled the little two-year-old Abbie who would wander into the kitchen to see a brother taking medicine and immediately cover her mouth and begin fake-coughing in an attempt to get some of the pretty purple stuff too.
We left Abbie to be spoiled by Genevieve and went to the UH football game. It is really fun to watch a group of boys who work hard and care about each other excel. (Please note that they are now ranked #25!) This season is going to be over much too soon for us!
Sunday, 11/19:
Abbie finally made it to Sunday School again! The past two weeks she’s been all dressed and then we either had a vomiting episode or a blow-out diaper that prevented us from going. This is the highlight of her week and she was noticeably excited to as we loaded the van.
Again, I thank God for her switch and for the months and months of work her therapist Lisa put into finding a way for Abbie to communicate. It is like a magnet for the other kids and ensures Abbie’s gets many opportunities to interact.
I did get a little teary when Kathleen told me that at one point Abbie got very frustrated. I asked her what she meant by that and she told me that Abbie had been pulling her head and chest forward, wanting to get up, and then a big tear rolled down her face. This broke my heart while it made my soul rejoice. How I hate to see her suffer, and how glad I am that she is driven to get up.
Sunday afternoon was very special for our church, as we had the dedication for our new sanctuary followed by a luau. I’d initially planned to take Abbie, but Genevieve wanted to come stay with her, and it turned out to be the best thing. She was falling asleep as we left, and probably enjoyed the restful time at home rather than the busy crowd and loud music.
As soon as I saw the program I tried to leave my seat to get tissue because I knew the waterfalls were bound to flow. This dedication was a poignant marker in Abbie’s journey because the capital campaign that paid for the construction was scheduled to kick off the Sunday after Abbie’s accident. During that initial week in the PICU, Pastor McDaniel and other leaders were questioning the timing of that since our church family was emotionally devastated by what had happened and was consumed with supporting us through it. The leaders gathered for a late night meeting at the hospital chapel to pray about it, and afterwards came up to pray for Abbie. That was how Everett ended up laying hands on Abbie so late at night. Anyway, Ray and I supported their decision to proceed because we had learned very powerfully that week how critical the bonds of Christian brotherhood (and sisterhood) can be, and want to see every family have the same support we experienced.
Now, here we were in our beautiful sanctuary that Pastor has called us to think of more as a bridge than anything else. Everett is already Home. Others in that late night group have moved away. On one hand it drove home that life has moved on since that terrible week. I opened the program to find the song “Be Thou My Vision” listed, and tears filled my eyes. It’s the song we sang together that first night, in the conference room next to where Abbie lay on a ventilator with “no hope”. To sing that song again, on a night of such sweet and true celebration, made it for me partially a celebration of how far we have come from the night we sang it through fearful tears.
I don’t think I’ve ever been part of such sweet worship and such pure celebration. It let me imagine what it will be like when Abbie is healed, and then led me to consider what it will be like when that celebration is continual and everlasting.
We honored the first pastor of our church, who served for 31 years. I realized that he and his wife labored all those years, and are now seeing another part of their vision fulfilled. I got to experience for the first time how truly precious the victory is that has been long awaited. The whole night felt like a foreshadowing to me, and I continue to wait with anticipation for what the Lord is going to do!
Monday 11/20
Another great PT/OT session in the sling. We made it to hands and knees very quickly, but the thrilling part today was her head control. As we were getting her in the sling I assumed Lynette was holding up her chest and arms from the other side. Nope, it was all Abbie. She was pushing through straightened arms to support her chest and head. She was looking straight forward, and looked so strong that for some reason she reminded me of a lion.
After we’d been in the sling for a while we got her out and sat her on a bolster to see if she could keep her knees so nicely bent. Easy-schmeasy. We do plan to get her back up on the tilt table on Friday, though, because her ankles are getting a little tight as we still await her stander.
The stander…this is a whole ‘nother issue. One that had me sobbing in absolute rage on Sunday evening. We are still in the process of working this out, hopefully for the betterment of all kids in Hawaii, so I don’t want to post details. Please just pray for us as we proceed. Pray that people in authority would listen and realize this is not just an isolated incident but rather that the system is broken.
There…all up to date! Just a couple of housekeeping things. Pictures…I need to post some so badly, I know. I lost the charger for the digital camera during our trip to Disneyland. I’ll work on this issue so that you can see, literally, how great Abbie looks these days.
Secondly, I don’t know why but I feel the need to write this. Many times I dread writing about things like how much better her drooling is, or how we are suctioning less. I feel like “oh, shouldn’t we be past this by now!?!” But, the real problem is that I don’t trust my words to convey the Abbie I see, so that when I post about things like drooling I fear that will paint a picture of her that is incomplete. I don’t know how to capture her spirit, her spark in writing. I’m not sure how to accurately convey her intelligence, her humor, or her beauty. When I look at her I don’t see “mentally retarded” “developmentally disabled” or “handicapped”. I see “strong”, “funny”, “loving” and “determined”. I pray that when I write about things that fit in the former category, they don’t eclipse the qualities in the second, because that is who she truly is.
Weds. 11/15
I was fortunate today to attend a conference called “Hilopa’a”, which in English means “to braid firmly”. The conference gathered players from all segments that impact on the lives of medically fragile or developmentally disabled individuals. In the opening remarks I was blessed and encouraged to hear about so many things that started in Hawaii, including Early Intervention and the Medical Home movement (keeping kids with their families rather than in institutions.) It renewed my hope that even from these small islands we can change things for the better.
The opening session was nearing its close when I answered my cell phone because Ray had called a number of times. I thought it would be normal logistical stuff…who’s picking up which boys etc…instead I found myself doubled over in my chair, fumbling around the tabletop for napkins to cover my sobbing face after he told me that Everett McDaniel had just come into one of Ray’s ERs and died.
Those of you who knew Everett need no explanation for my response. For those not blessed to meet him on this side of Heaven…Everett was a mountain of a man, both physically and in heart. A leader in our church, he came with the elders after midnight one evening to lay hands on Abbie in the PICU, and seeing his huge, gentle hands laid on her tiny hurting body brought me such peace. But most of all, Everett gave the best hugs ever! Between my sobs that’s all I could say to Ray, “No one give hugs like Everett.” A welcoming smile and a warm hug awaited everyone entering our church on Sunday morning. Everett taught all of us how meaningful something as simple as a hug can be.
I continued crying unabashedly down the hall to the first breakout session. A woman who had been sitting next to me when I got the call, caught up with me to give comfort. She related that she had been reading Abbie’s site since the beginning and had been so blessed. As we talked my eternal vision was renewed, and I realized that at that very moment Everett was in Heaven..wow!! I was crying selfish tears, because I was going to miss his hugs, but he was rejoicing.
Almost losing a child makes Heaven so real, and the battle to bring her back fills me with anticipation of when the fight is over, every tear is wiped away, and we enter into perfect joy. Everett’s homegoing has also made Heaven more real because now I can clearly envision who is going to be greeting me at the gates, with a warm hug, big smile and probably wearing a white-on-white Reyn Spooner shirt.
The first breakout session was informative, but I was thrilled by the second. I knew it was for me just by the title. “When Strangling Isn’t an Option: How to Work Well in Difficult Teams”. There were about 50 professionals in the room, 4 panelists, and me. I listened for quite a while about how teams can work together well, how trust is built, and how decisions can be reached. This discussion focused on the IEP process for special needs kids in schools. Finally I had to rain on the Peace and Love Parade and inject a little reality. I related our IEP experience, of not being privy to much of the information discussed away from the table, and even decisions made without our knowledge, let alone input. I remarked that because of the broken trust we had to walk away from the table and continue to home educate Abbie to this day.
The Department of Education panelist spoke and within one minute had said the word “constraints” five times. Parents needed to understand the constraints of the system, the schools are under constraints etc. This was familiar and expected, so I just let it pass. Then, an angel was revealed. He was another panelist, representing the Board of Education. He said something to the effect of “I don’t buy the ‘constraints’ thing. You need to be focusing on the needs of the kids first, and trying to figure out how to meet them.” I started crying. To hear someone in a position of influence advocate for our kids was overwhelming and unexpected. Later in the session he also remarked that there needs to be an “attitude change” at the principal and school level. He didn’t concretely express what this change referred to but it’s well understood that complex specials needs kids are seen as drains on resources who are not going to improve, and therefore are unworthy of investment. Principals have been recorded saying this to parents in IEP meetings recently, so this is more than just a perception. I left there with more hope than I’ve had in a long time, and if you ever get a chance to vote for this angel in a Board of Education election, I beg you to do so. Check the box for Garrett Toguchi, and thank God there are people like him fighting for our kids.
In the final session, God used the exercise to remind me of just how blessed I am. We had to fill out a “Natural Supports” worksheet with four concentric circles. The inner circle was the “3am circle” -- people you can call for help at three in the morning. The next circle was “good friends”, the next was “acquaintances” and finally “paid supports” I had to use just initials to fit people in my “3am” box, and still didn’t get everyone in. As we went around and shared our results, I found out that I was almost the only one in the room with anyone except immediate family in the inner circle. I didn’t even work on circles 2 and 3 because again, there were just too many names. This was inconceivable to everyone around me, and made me realize anew how God is carrying us through this – with your hands!
The other thing it made me think is to ask each of you, wherever you are, if you would reach out to a family with a special needs child. Understand that they may not return phone calls often, if ever. This isn’t lack of desire, or flakiness, it’s just sometimes impossible. Simple kindnesses are profound to a family that may feel isolated. Stop and talk to them when you see them out and about, encourage your kids to interact with theirs, don’t be afraid to ask questions, find a way to include them. These things have made all the difference to us, and to Abbie. You may one day find yourself in someone’s “3am circle” and will be blessed because of it.
Thurs. 11/16:
Abbie’s tone had been a little higher lately, so I really didn’t know what to expect at PT. We decided to try to get her on hands and knees with the sling again. We raised her a little, but her knees weren’t wanting to bend much. I tried to keep my spirits up by focusing on how well she was doing with her hands, arms and head. Even though it didn’t look like we could get into a true crawling position we decided to raise the sling anway. Once it was at a height to allow her knees to bend to 90 degrees they just melted into the mat, simple as that. We ended up having a terrific session, and at the end I was relating highlights of the Hilopa’a conference to Lynette and Patty. One takeaway point was to ensure we celebrate victories, no matter how small. Lynette looked at me and said, “Well, today is definitely a session worth celebrating.” I grinned at that, because it’s sometimes hard for me to judge what is a good session and what is a great one. I am so proud of Abbie!
Friday, 11/17:
Another little vomiting episode impacted Abbie’s sats in the morning and made her participation in the afternoon Speech group questionable. I laid down to take an early afternoon nap and awoke to find Abbie in her wheelchair, all set to go. When I asked Debbie if we should go to speech, Abbie hit her switch, blinked her eyes, raised her legs, and in all ways available, shouted, “YES!” So, with her sat rates good, we took off.
These sessions are a real respite for me, because while Abbie is enjoying her friends and doing good speech work, I get a break and some time to spend with other parents. We chattered away the hour-and-a-half in the snap of a finger, and then went down the hall to collect our group of singer/artist/reader kids. The therapists were raving about how responsive and engaged Abbie was – they have really seen changes in her these past two months. They were doing a painting project and Abbie didn’t much care about it until she noticed what a mess it was making on the therapists' hands, then she couldn’t get enough. A great afternoon!
Saturday, 11/18:
Another little peek into Abbie’s personality that confirms she is the same rascally girl. Ray noticed that every time I said the word “nebulizer” she would have a little cough. Not a productive one, and not one that took much effort, just a little one. Just as I was preparing to actually give her a nebulizer I said the word again, and she gave her little cough again. Ray said, “Abbie, even if you cough you still have to have a nebulizer.” Out came her little dimple. Busted!!! She’d been trying to get out of the neb treatment by faking coughs, because we always tell her they help her have big coughs and clear her chest. Ray and I both recalled the little two-year-old Abbie who would wander into the kitchen to see a brother taking medicine and immediately cover her mouth and begin fake-coughing in an attempt to get some of the pretty purple stuff too.
We left Abbie to be spoiled by Genevieve and went to the UH football game. It is really fun to watch a group of boys who work hard and care about each other excel. (Please note that they are now ranked #25!) This season is going to be over much too soon for us!
Sunday, 11/19:
Abbie finally made it to Sunday School again! The past two weeks she’s been all dressed and then we either had a vomiting episode or a blow-out diaper that prevented us from going. This is the highlight of her week and she was noticeably excited to as we loaded the van.
Again, I thank God for her switch and for the months and months of work her therapist Lisa put into finding a way for Abbie to communicate. It is like a magnet for the other kids and ensures Abbie’s gets many opportunities to interact.
I did get a little teary when Kathleen told me that at one point Abbie got very frustrated. I asked her what she meant by that and she told me that Abbie had been pulling her head and chest forward, wanting to get up, and then a big tear rolled down her face. This broke my heart while it made my soul rejoice. How I hate to see her suffer, and how glad I am that she is driven to get up.
Sunday afternoon was very special for our church, as we had the dedication for our new sanctuary followed by a luau. I’d initially planned to take Abbie, but Genevieve wanted to come stay with her, and it turned out to be the best thing. She was falling asleep as we left, and probably enjoyed the restful time at home rather than the busy crowd and loud music.
As soon as I saw the program I tried to leave my seat to get tissue because I knew the waterfalls were bound to flow. This dedication was a poignant marker in Abbie’s journey because the capital campaign that paid for the construction was scheduled to kick off the Sunday after Abbie’s accident. During that initial week in the PICU, Pastor McDaniel and other leaders were questioning the timing of that since our church family was emotionally devastated by what had happened and was consumed with supporting us through it. The leaders gathered for a late night meeting at the hospital chapel to pray about it, and afterwards came up to pray for Abbie. That was how Everett ended up laying hands on Abbie so late at night. Anyway, Ray and I supported their decision to proceed because we had learned very powerfully that week how critical the bonds of Christian brotherhood (and sisterhood) can be, and want to see every family have the same support we experienced.
Now, here we were in our beautiful sanctuary that Pastor has called us to think of more as a bridge than anything else. Everett is already Home. Others in that late night group have moved away. On one hand it drove home that life has moved on since that terrible week. I opened the program to find the song “Be Thou My Vision” listed, and tears filled my eyes. It’s the song we sang together that first night, in the conference room next to where Abbie lay on a ventilator with “no hope”. To sing that song again, on a night of such sweet and true celebration, made it for me partially a celebration of how far we have come from the night we sang it through fearful tears.
I don’t think I’ve ever been part of such sweet worship and such pure celebration. It let me imagine what it will be like when Abbie is healed, and then led me to consider what it will be like when that celebration is continual and everlasting.
We honored the first pastor of our church, who served for 31 years. I realized that he and his wife labored all those years, and are now seeing another part of their vision fulfilled. I got to experience for the first time how truly precious the victory is that has been long awaited. The whole night felt like a foreshadowing to me, and I continue to wait with anticipation for what the Lord is going to do!
Monday 11/20
Another great PT/OT session in the sling. We made it to hands and knees very quickly, but the thrilling part today was her head control. As we were getting her in the sling I assumed Lynette was holding up her chest and arms from the other side. Nope, it was all Abbie. She was pushing through straightened arms to support her chest and head. She was looking straight forward, and looked so strong that for some reason she reminded me of a lion.
After we’d been in the sling for a while we got her out and sat her on a bolster to see if she could keep her knees so nicely bent. Easy-schmeasy. We do plan to get her back up on the tilt table on Friday, though, because her ankles are getting a little tight as we still await her stander.
The stander…this is a whole ‘nother issue. One that had me sobbing in absolute rage on Sunday evening. We are still in the process of working this out, hopefully for the betterment of all kids in Hawaii, so I don’t want to post details. Please just pray for us as we proceed. Pray that people in authority would listen and realize this is not just an isolated incident but rather that the system is broken.
There…all up to date! Just a couple of housekeeping things. Pictures…I need to post some so badly, I know. I lost the charger for the digital camera during our trip to Disneyland. I’ll work on this issue so that you can see, literally, how great Abbie looks these days.
Secondly, I don’t know why but I feel the need to write this. Many times I dread writing about things like how much better her drooling is, or how we are suctioning less. I feel like “oh, shouldn’t we be past this by now!?!” But, the real problem is that I don’t trust my words to convey the Abbie I see, so that when I post about things like drooling I fear that will paint a picture of her that is incomplete. I don’t know how to capture her spirit, her spark in writing. I’m not sure how to accurately convey her intelligence, her humor, or her beauty. When I look at her I don’t see “mentally retarded” “developmentally disabled” or “handicapped”. I see “strong”, “funny”, “loving” and “determined”. I pray that when I write about things that fit in the former category, they don’t eclipse the qualities in the second, because that is who she truly is.
Tuesday, November 14, 2006
Another link
So far we're actually having somewhat of a normal week - everyone has gone to work/school and Abbie is doing well.
We've been getting Abbie up to stand every day, and although some days we can only do it for short periods before her legs start to discolor, I do think it is helping her. I've also been feeding her peanut butter and jelly orally with breakfast -- two tastes she loves, especially together. At the same time I have been putting conductive patches under her chin and connecting them to the Biomodulator to stimulate her swallowing and improve her facial tone. I know this is having an impact because although Debbie wasn't aware I have been doing this, she asked yesterday what was up because Abbie wasn't drooling at all and not needing to be suctioned either. This was encouraging for me to hear and spurs me to keep up our early morning stim sessions.
Yesterday I was visited by some friends I hadn't seen since Abbie was in the PICU, Jim and Remle Winand. In fact, Remle brought 3-week old Levi to visit us, and chatted until the nurses pointed out that there were some very sick kids in the unit, including some with RSV...that was quickly the end of our visit! Jim and Remle brought now-two-year old Levi and big sister Mia over so that we could discuss things I've learned on this journey that may help Jim beat the colorectal cancer he was recently diagnosed with. He is a very healthy, 38-year-old firefighter (nothing bad should ever happen to those guys!), and finally went in to be checked because the pain level was getting intolerable. I think Jim would love to tell anyone reading..."GO EARLY!" They are still awaiting the PET scan results to determine if the cancer has spread. Jim is in a serious fight, I realized, as I saw his chemo pump around in a fanny pack around his waist. I sent them home with a couple of things we use, as well as information about Dr. Tennant. Although I would never wish a diagnosis like this on anyone, it feels good for me to be back on the other side, having something to give instead receiving all the time. The Winands are another link in Abbie's chain, of returning all that we have been blessed with. So often, when I am am awake in the middle of the night I worry about things like whether I've sent thank you cards to people or have adequately expressed my gratitude for all that we have received. I think the answer to those questions is "no", but if you are one of the ones to whom I owe a card, phone call, or email, please know that while I'm not currently able to correspond as much as I 'd like, we try every day to pass your kindness on to others.
Abbie woke up right before they left, so Mia sat up on her bed with her a while and talked. On the way to the door Mia asked me why Abbie couldn't talk back to her. How to explain that to a four-year-old without engendering fear of the water??? I told her Abbie got a big owie in her head and that it's kind of like talking to someone on a telephone who can't hear you...Abbie is talking to her body, trying to tell it what to do, but it can't quite hear her well enough yet.
We've been getting Abbie up to stand every day, and although some days we can only do it for short periods before her legs start to discolor, I do think it is helping her. I've also been feeding her peanut butter and jelly orally with breakfast -- two tastes she loves, especially together. At the same time I have been putting conductive patches under her chin and connecting them to the Biomodulator to stimulate her swallowing and improve her facial tone. I know this is having an impact because although Debbie wasn't aware I have been doing this, she asked yesterday what was up because Abbie wasn't drooling at all and not needing to be suctioned either. This was encouraging for me to hear and spurs me to keep up our early morning stim sessions.
Yesterday I was visited by some friends I hadn't seen since Abbie was in the PICU, Jim and Remle Winand. In fact, Remle brought 3-week old Levi to visit us, and chatted until the nurses pointed out that there were some very sick kids in the unit, including some with RSV...that was quickly the end of our visit! Jim and Remle brought now-two-year old Levi and big sister Mia over so that we could discuss things I've learned on this journey that may help Jim beat the colorectal cancer he was recently diagnosed with. He is a very healthy, 38-year-old firefighter (nothing bad should ever happen to those guys!), and finally went in to be checked because the pain level was getting intolerable. I think Jim would love to tell anyone reading..."GO EARLY!" They are still awaiting the PET scan results to determine if the cancer has spread. Jim is in a serious fight, I realized, as I saw his chemo pump around in a fanny pack around his waist. I sent them home with a couple of things we use, as well as information about Dr. Tennant. Although I would never wish a diagnosis like this on anyone, it feels good for me to be back on the other side, having something to give instead receiving all the time. The Winands are another link in Abbie's chain, of returning all that we have been blessed with. So often, when I am am awake in the middle of the night I worry about things like whether I've sent thank you cards to people or have adequately expressed my gratitude for all that we have received. I think the answer to those questions is "no", but if you are one of the ones to whom I owe a card, phone call, or email, please know that while I'm not currently able to correspond as much as I 'd like, we try every day to pass your kindness on to others.
Abbie woke up right before they left, so Mia sat up on her bed with her a while and talked. On the way to the door Mia asked me why Abbie couldn't talk back to her. How to explain that to a four-year-old without engendering fear of the water??? I told her Abbie got a big owie in her head and that it's kind of like talking to someone on a telephone who can't hear you...Abbie is talking to her body, trying to tell it what to do, but it can't quite hear her well enough yet.
Remle is a woman after my own heart - praising God in the midst of the storm and believing his promises as the ground shift beneath her. You can follow Jim's battle, and pray for his family, by going to www.pray4jim.blogspot.com.
Abbie's tone has been a little bit higher since we've not been doing hyperbaric therapy these past couple of weeks. I am hoping to get that started again next week. In the meantime, we are giving her lots of massages and exercise to keep her comfortable.
I usually don't do this, but I would like to include a story by and about a woman who is one of my mentors (unbeknownst to her). It is lengthy but more than worth the read...
HAIR BRUSH EXPERIENCE
BETH MOORE AT THE AIRPORT
For those of you who do not know Beth Moore, she is an outstanding Bible teacher, author, nationwide speaker and is a married mother of two daughters This is one of her experiences:
April 20, 2005, at the airport in Knoxville, waiting to board the plane, I had the Bible on my lap and was very intent upon what I was doing. I'd had a marvelous morning with the Lord. I say this because I want to tell you it is a scary thing to have the Spirit of God really working in you. You could end up doing some things you never would have done otherwise. Life in the Spirit can be dangerous for a thousand reasons not the least of which is your ego.
I tried to keep from staring, but he was such a strange sight. Humped over in a wheelchair, he was skin and bones, dressed in clothes that obviously fit when he was at least twenty pounds heavier. His knees protruded from his trousers, and his shoulders looked like the coat hanger was still in his shirt His hands looked like tangled masses of veins and bones. The strangest part of him was his hair and nails. Stringy gray hair hung well over his shoulders and down part of his back. His fingernails were long, clean but strangely out of place on an old man. I looked down at my Bible as fast as I could, discomfort burning my face.
As I tried to imagine what his story might have been, I found myself wondering if I'd just had a Howard Hughes sighting. Then, I remembered that he was dead. So this man in the airport...an impersonator maybe? Was a camera on us somewhere? There I sat, trying to concentrate on the Word to keep from being concerned about a thin slice of humanity served on a wheelchair only a few seats from me. All the while, my heart was growing more and more overwhelmed with a feeling for him.
Let's admit it. Curiosity is a heap more comfortable than true concern, and suddenly I was awash with aching emotion for this bizarre-looking old man. I had walked with God long enough to see the handwriting on the wall. I've learned that when I begin to feel what God feels, something so contrary to my natural feelings, something dramatic is bound to happen. And it may be embarrassing. I immediately began to resist because I could feel God working on my spirit and I started arguing with God in my mind.
"Oh, no, God, please, no." I looked up at the ceiling as if I could stare straight through it into heaven and said, "Don't make me witness to this man. Not right here and now. Please. I'll do anything. Put me on the same plane, but don't make me get up here and witness to this man in front of this gawking audience. Please, Lord!" There I sat in the blue vinyl chair begging His Highness, "Please don't make me witness to this man. Not now. I'll do it on the plane."Then I heard it..."I don't want you to witness to him. I want you to brush his hair." The words were so clear, my heart leapt into my throat, and my thoughts spun like a top. Do I witness to the man or brush his hair? No-brainer. I looked straight back up at the ceiling and said, "God, as I live and breathe, I want you to know I am ready to witness to this man. I'm on this, Lord. I'm your girl! You've never seen a woman witness to a man faster in your life. What difference does it make if his hair is a mess if he is not redeemed? I am going to witness to this man."
Again as clearly as I've ever heard an audible word, God seemed to write this statement across the wall of my mind. "That is not what I said, Beth. I don't want you to witness to him. I want you to go brush his hair." I looked up at God and quipped, "I don't have a hairbrush. It's in my suitcase on the plane. How am I supposed to brush his hair without a hairbrush?" God was so insistent that I almost involuntarily began to walk toward him as these thoughts came to me from God's word: "I will thoroughly furnish you unto all good works" (2 Timothy 3:17) I stumbled over to the wheelchair thinking I could use one myself. Even as I retell this story, my pulse quickens and I feel those same butterflies.
I knelt down in front of the man and asked as demurely as possible, "Sir, may I have the pleasure of brushing your hair?" He looked back at me and said, "What did you say?" "May I have the pleasure of brushing your hair?" To which he responded in volume ten, "Little lady, if you expect me to hear you, you're going to have to talk louder than that." At this point, I took a deep breath and blurted out, "SIR, MAY I HAVE THE PLEASURE OF BRUSHING YOUR HAIR?" At which point, every eye in the place darted right at me. I was the only thing in the room looking more peculiar than old Mr. Longlocks. Face crimson and forehead breaking out in a sweat, I watched him look up at me with absolute shock on his face, and say, "If you really want to." Are you kidding? Of course I didn't want to. But God didn't seem interested in my personal preference right about then. He pressed on my heart until I could utter the words, "Yes, sir, I would be pleased. But I have one little problem. I don't have a hair brush.""I have one in my bag," he responded.
I went around to the back of that wheelchair, and I got on my hands and knees and unzipped the stranger's old carry-on, hardly believing what I was doing. I stood up and started brushing the old man's hair. It was perfectly clean, but it was tangled and matted. I don't do many things well, but must admit I've had notable experience untangling knotted hair mothering two little girls. Like I'd done with either Amanda or Melissa in such a condition, I began brushing at the very bottom of the strands, remembering to take my time not to pull. A miraculous thing happened to me as I started brushing that old man's hair.Everybody else in the room disappeared. There was no one alive for those ",moments except that old man and me.
I brushed and I brushed and I brushed until every tangle was out of that hair. I know this sounds so strange, but I've never felt that kind of love for another soul in my entire life. I believe with all my heart, I - for that few minutes - felt a portion of the very love of God. That He had overtaken my heart for a little while like someone renting a room and making Himself at home for a short while. The emotions were so strong and so pure that I knew they had to be God's.
His hair was finally as soft and smooth as an infant's. I slipped the brush back in the bag, went around the chair to face him. I got back down on my knees, put my hands on his knees, and said, "Sir, do you know my Jesus?" He said, "Yes, I do." Well, that figures, I thought. He explained, "I've known Him since I married my bride. She wouldn't marry me until I got to know the Savior." He said, "You see, the problem is, I haven't seen my bride in months. I've had open-heart surgery, and she's been too ill to come see me. I was sitting here thinking to myself, what a mess I must be for my bride."
Only God knows how often He allows us to be part of a divine moment when we're completely unaware of the significance. This, on the other hand, was one of those rare encounters when I knew God had intervened in details only He could have known. It was a God moment, and I'll never forget it. Our time came to board, and we were not on the same plane. I was deeply ashamed of how I'd acted earlier and would have been so proud to have accompanied him on that aircraft. I still had a few minutes, and as I gathered my things to board, the airline hostess returned from the corridor, tears streaming down her cheeks. She said, "That old man's sitting on the plane, sobbing. Why did you do that? What made you do that?"
I said,"Do you know Jesus? He can be the bossiest thing!" And we got to share. I learned something about God that day. He knows if you're exhausted because you're hungry, when you're serving in the wrong place or if it is time to move on, but feel too responsible to budge. He knows if you're hurting or feeling rejected. He knows if you're sick or drowning under a wave of temptation. Or He knows if you just need your hair brushed. He sees you as an individual. Tell Him your need and he will fill it!!
I got on my own flight, sobs choking my throat, wondering how many opportunities just like that one had I missed along the way...all because I didn't want people to think I was strange. God didn't send me to that old man. He sent that old man to me.
John 1:14 "The Word became flesh and made his dwelling among us. We have seen his glory, the glory of the One and Only, who came from the Father, full of grace and truth." Life shouldn't be a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather, to skid in broadside, thoroughly used up, totally worn out, and loudly shouting, "Wow! What a ride! Thank You, Lord!"
Be Blessed!
Beth Moore
Friday, November 10, 2006
Nursing Overtime
Just a quick note to say all is well with Abbie. It's everything else in our life that's been keeping me from posting. Ray has been ill since last Thursday, and actually had to stay home from work Monday through Wednesday. I don't believe that's ever happened before, and it's a good indicator of how miserable he was. Chase was also sick on Monday and Tuesday, so my acquired nursing skills were put into use. Unfortunately, Debbie was also sick on Monday and Tuesday, so I felt a bit like the hamster on the wheel...running as hard as I could but not really getting anywhere.
The outcome of the moms vs. boys football game last weekend was, of course, a TIE! We found that throwing candy on the ground during a punt is a good distraction technique when playing against eight and nine year olds.
We are very fortunate to have the folks from Litegait, the maker of The Walkable, in town for a conference. They gave a lunchtime presentation to therapists at the children's hospital today, which I got to attend a portion of. Tomorrow they are going to meet us again at the hospital, but this time I am going to bring Abbie along so that can do a one-on-one consultation for her. We will be able to learn so much from them, not only about how to get Abbie walking again, but also about how to use the Walkable in creative ways to help with sitting, crawling, and playing. I was so enthused by the material I heard today that I put Abbie up in the Walkable this evening. I realized that even without orthotics we could still use it, we may just not be able to have her bear as much weight.
It has probably been 8 weeks since she's been up, and that girl always amazes me. She held her head and trunk for 10 minutes straight, looking as if she were thinking "ho-hum, I do this all the time." I was able to get her feet into a good position, with the heels almost all the way down - much more than I expected after this long break. Again, proof that she is improving even when we are not working on certain areas.
I was feeling pretty ragged earlier this week, and when that happens I tend to drift away from my moorings. About the time I was meandering into some serious waves, my sweet friend Julie K. sent me an encouraging note with a Bible verse that made me sit, catch my breath, and recharge, and then allowed me to get up again with a smile. So, I want to leave you with that same verse tonight.
I have not stopped giving thanks for you, remembering you in my prayers. I keep asking that the God of our Lord Jesus Christ, the glorious Father, may give you the Spirit of wisdom and revelation, so that you may know him better. I pray also that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints, and his incomparably great power for us who believe.
Eph. 1: 16-19
The outcome of the moms vs. boys football game last weekend was, of course, a TIE! We found that throwing candy on the ground during a punt is a good distraction technique when playing against eight and nine year olds.
We are very fortunate to have the folks from Litegait, the maker of The Walkable, in town for a conference. They gave a lunchtime presentation to therapists at the children's hospital today, which I got to attend a portion of. Tomorrow they are going to meet us again at the hospital, but this time I am going to bring Abbie along so that can do a one-on-one consultation for her. We will be able to learn so much from them, not only about how to get Abbie walking again, but also about how to use the Walkable in creative ways to help with sitting, crawling, and playing. I was so enthused by the material I heard today that I put Abbie up in the Walkable this evening. I realized that even without orthotics we could still use it, we may just not be able to have her bear as much weight.
It has probably been 8 weeks since she's been up, and that girl always amazes me. She held her head and trunk for 10 minutes straight, looking as if she were thinking "ho-hum, I do this all the time." I was able to get her feet into a good position, with the heels almost all the way down - much more than I expected after this long break. Again, proof that she is improving even when we are not working on certain areas.
I was feeling pretty ragged earlier this week, and when that happens I tend to drift away from my moorings. About the time I was meandering into some serious waves, my sweet friend Julie K. sent me an encouraging note with a Bible verse that made me sit, catch my breath, and recharge, and then allowed me to get up again with a smile. So, I want to leave you with that same verse tonight.
I have not stopped giving thanks for you, remembering you in my prayers. I keep asking that the God of our Lord Jesus Christ, the glorious Father, may give you the Spirit of wisdom and revelation, so that you may know him better. I pray also that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in the saints, and his incomparably great power for us who believe.
Eph. 1: 16-19
Thursday, November 02, 2006
Ups, Downs, and Rebounds
I got some really good medicine to pull me out of the doldrums on Monday...football practice. Not watching it, doing it! The twins' team has their final game on Saturday, so after that they are going to face their toughest opponents yet - their moms! Not wanting to look completely foolish on game day, we've decided to have three practices first. It did wonders for me to be running around, perfecting the "pitch left pass" play (boys, watch out!)
Later that evening, still in somewhat of a funk, I heard a commercial that simply said, "When you feel like giving up, remember why you hung on so long to begin with." Great point.
Tuesday was a terrific day; I felt well, got a lot accomplished and Abbie had a good day as well. God was gracious in giving us this day, because we certainly needed to catch our breath to deal with the Wednesday that followed it.
Abbie was on oxygen all night, but when I went to get her out of bed the cannula wasn't even in her nose, and her sats were 96-97. Being slightly grumpy still, I decided we wouldn't go for a morning walk as we had the previous two days. I felt sort of guilty about that, but God was about to teach me that what is right on one day may not be the right thing on another. Shortly after I began feeding her, Abbie vomited just a little and began coughing out a lot of mucous. This doesn't happen regularly, but it's not totally uncommon either, so I wasn't overly concerned. Then her sats started dropping quickly. I put her on two liters of oxygen, but she continued to drop, all the way down to 82. I bumped her up to three, and then four. She still wasn't quite stable at four liters, and at that point I began considering calling an ambulance because I was home alone.
Thankfully, Debbie arrived shortly after I turned her up to four liters, and quickly did an assessment. She hates seeing Abbie go to the ER as much as I do, but we agreed that we really didn't have a choice, so began packing everything up for the trip.
Dr. E. was an ER doc I hadn't yet met, but with whom I was very impressed. It didn't take him long to burst my bubble by saying, "Plan on her being admitted. This is a high oxygen requirement, especially since she normally doesn't need any. Unless something miraculous happens, like her coming off the oxygen, I think we need to keep her here." Darn it! He suspected, as we did, that Abbie had aspirated something during the vomiting/coughing episodes. He ordered a chest Xray and an IV to start antibiotics.
We went to radiology first, with Abbie being driven by her "Uncle Mike." Mike is the radiology tech we got to know so well when he came to give Abbie a chest Xray each morning in the PICU after her injury. We have seen him many times since, and he has a real soft spot for Abbie. He and I teamed up to sit Abbie on a stool and take a couple quick pictures. As we were loading her back in her chair she broke into a HUGE grin for Mike, who had never seen her smile. His joy was infectious and overrode the sickened feeling I had from being in the ER again.
Back in the ER I worked on slowly weaning the oxgyen. I had her down to 2 1/2 liters when the nurse came to put in the IV. I asked her to wait, knowing that if the line went in, we'd be staying for sure. She got Dr. E's approval to hold off, and within an hour I had Abbie down to one liter, with my hopes rising that we wouldn't be going upstairs.
The chest film came back, showing no evidence of aspiration, but giving an explanation for why Abbie has been on and off oxygen for the last month or so. There is a technical name I am not even going to try to spell, but the bottom line is that in the lower portions of both of her lungs there is a bit of collapsing going on. This is caused by not using that portion of the lung and not moving around enough. As we put the pieces together, they all fit --- after her leg was burned she couldn't wear the orthotics we use for standing, so she hasn't done much standing since then. For a while after she was burned her activity level was much lower as we tried to protect the wound and she guarded it. Her breathing was also much shallower because of the pain she was in.
Just like most things in this journey, it's never one simple issue, there are always secondary, tertiary, and kajillionary things to deal with. I didn't see this one coming, and felt bad that we have allowed her to get to this point. The good news is that is reversible. We are going to concentrate on getting her up, even without orthotics, moving her around a lot, and enouraging her, through activity, to take deep, large breaths.
They gave her a nebulizer treatment before we left the ER, and it helped her significantly. So much so, that by the time we left she was off oxygen. The "miraculous" hurdle Dr. E. had set took only three hours to overcome...praise God. As we were leaving I realized again that I had seen the hand of the Romans 8:28 God. We needed that chest film to figure out what has been going on with Abbie so that we can fix it. Without an acute problem we never would've had an Xray taken. All things work together for good...
She got a neb treatment in the evening and then slept deeply, without oxgyen all night. We plan to give her about 3 treatments a day until we start to see improvements in her lungs. She looks noticeably better and brighter this morning.
Another day, another step -- and even the steps that hurt get us closer to the finish line.
Later that evening, still in somewhat of a funk, I heard a commercial that simply said, "When you feel like giving up, remember why you hung on so long to begin with." Great point.
Tuesday was a terrific day; I felt well, got a lot accomplished and Abbie had a good day as well. God was gracious in giving us this day, because we certainly needed to catch our breath to deal with the Wednesday that followed it.
Abbie was on oxygen all night, but when I went to get her out of bed the cannula wasn't even in her nose, and her sats were 96-97. Being slightly grumpy still, I decided we wouldn't go for a morning walk as we had the previous two days. I felt sort of guilty about that, but God was about to teach me that what is right on one day may not be the right thing on another. Shortly after I began feeding her, Abbie vomited just a little and began coughing out a lot of mucous. This doesn't happen regularly, but it's not totally uncommon either, so I wasn't overly concerned. Then her sats started dropping quickly. I put her on two liters of oxygen, but she continued to drop, all the way down to 82. I bumped her up to three, and then four. She still wasn't quite stable at four liters, and at that point I began considering calling an ambulance because I was home alone.
Thankfully, Debbie arrived shortly after I turned her up to four liters, and quickly did an assessment. She hates seeing Abbie go to the ER as much as I do, but we agreed that we really didn't have a choice, so began packing everything up for the trip.
Dr. E. was an ER doc I hadn't yet met, but with whom I was very impressed. It didn't take him long to burst my bubble by saying, "Plan on her being admitted. This is a high oxygen requirement, especially since she normally doesn't need any. Unless something miraculous happens, like her coming off the oxygen, I think we need to keep her here." Darn it! He suspected, as we did, that Abbie had aspirated something during the vomiting/coughing episodes. He ordered a chest Xray and an IV to start antibiotics.
We went to radiology first, with Abbie being driven by her "Uncle Mike." Mike is the radiology tech we got to know so well when he came to give Abbie a chest Xray each morning in the PICU after her injury. We have seen him many times since, and he has a real soft spot for Abbie. He and I teamed up to sit Abbie on a stool and take a couple quick pictures. As we were loading her back in her chair she broke into a HUGE grin for Mike, who had never seen her smile. His joy was infectious and overrode the sickened feeling I had from being in the ER again.
Back in the ER I worked on slowly weaning the oxgyen. I had her down to 2 1/2 liters when the nurse came to put in the IV. I asked her to wait, knowing that if the line went in, we'd be staying for sure. She got Dr. E's approval to hold off, and within an hour I had Abbie down to one liter, with my hopes rising that we wouldn't be going upstairs.
The chest film came back, showing no evidence of aspiration, but giving an explanation for why Abbie has been on and off oxygen for the last month or so. There is a technical name I am not even going to try to spell, but the bottom line is that in the lower portions of both of her lungs there is a bit of collapsing going on. This is caused by not using that portion of the lung and not moving around enough. As we put the pieces together, they all fit --- after her leg was burned she couldn't wear the orthotics we use for standing, so she hasn't done much standing since then. For a while after she was burned her activity level was much lower as we tried to protect the wound and she guarded it. Her breathing was also much shallower because of the pain she was in.
Just like most things in this journey, it's never one simple issue, there are always secondary, tertiary, and kajillionary things to deal with. I didn't see this one coming, and felt bad that we have allowed her to get to this point. The good news is that is reversible. We are going to concentrate on getting her up, even without orthotics, moving her around a lot, and enouraging her, through activity, to take deep, large breaths.
They gave her a nebulizer treatment before we left the ER, and it helped her significantly. So much so, that by the time we left she was off oxygen. The "miraculous" hurdle Dr. E. had set took only three hours to overcome...praise God. As we were leaving I realized again that I had seen the hand of the Romans 8:28 God. We needed that chest film to figure out what has been going on with Abbie so that we can fix it. Without an acute problem we never would've had an Xray taken. All things work together for good...
She got a neb treatment in the evening and then slept deeply, without oxgyen all night. We plan to give her about 3 treatments a day until we start to see improvements in her lungs. She looks noticeably better and brighter this morning.
Another day, another step -- and even the steps that hurt get us closer to the finish line.
Sunday, October 29, 2006
Sunday School
Today Abbie went to Sunday School for the first time since the day before her injury. My sweet friend, Kathleen, recently learned how to care for Abbie so she could stay with her while we were at Disneyland. Kathleen brings Kyle and the twins home from school every day, so one day this week she mentioned she'd like to take Abbie to Sunday School during second service. I was so excited for Abbie to be together with kids again, and programmed her switch with some important messages, hoping that she'd use them.
Right now the second service Sunday School time is dedicated to preparing for the Christmas musical, so I knew Abbie would love being in the midst of the singing. I recorded, "I can't wait to hear you sing again.", and Kathleen reported that when the kids finished a song, Abbie hit her switch to play that message. She also said that when she introduced Abbie to the kids, many of whom did not know her before, Abbie used her switch to say "Hi! My name is Abbie!" I program the messages in sequential order, so Abbie doesn't have too much control over which message plays when she hits her switch. I think God orchestrated things just right for her today so that the kids could recognize there is a smart, friendly little girl in that purple wheelchair.
Abbie also made a little star ornament this morning, with Auntie Kathleen helping her color it. It brought tears to my eyes because I so vividly recall the Sunday School craft Abbie made the day before she got hurt...the construction flower lei that she let me wear to lunch after church. It is sweet for me to see her doing some things she enjoys again, even if she has to do them a bit differently for now.
Our family was blessed that while Abbie was enjoying her time with the kids, the rest of us were able to be together in the service and really focus on the message. It was an important one for me to hear today, and proof that even the most obscure people can teach us meaningful lessons. Pastor McDaniel started off by asking if any of us knew who Shamgar was. To me he sounded like the Viking cousin of Scooby-Doo's buddy, but he was actually one of David's mighty men who served as a judge during a critical time in Israel's history.
The entire commentary about Shamgar takes one verse, Judges 3:31, "After Ehud was Shamgar son of Anath, who slew 600 Philistine men with an oxgoad. He also delivered Israel."
How much can one draw from that tiny verse? With just a little digging there is a gold mine to be had. You have to know that an oxgoad, as may be apparent from the name, was not a weapon of war but rather a 6 to 10 foot long wooden stick with an implement on the end normally used for sharpening plows. I thought a lot today about Shamgar, slaying 600 Philistines with a farming tool. I wondered if sometimes he wished he had a sword instead. I wondered if after Philistine #495 he got weary and discouraged. I wondered if he ever asked God "How much longer, " and "How many more can there be to come against me?"
Right now the second service Sunday School time is dedicated to preparing for the Christmas musical, so I knew Abbie would love being in the midst of the singing. I recorded, "I can't wait to hear you sing again.", and Kathleen reported that when the kids finished a song, Abbie hit her switch to play that message. She also said that when she introduced Abbie to the kids, many of whom did not know her before, Abbie used her switch to say "Hi! My name is Abbie!" I program the messages in sequential order, so Abbie doesn't have too much control over which message plays when she hits her switch. I think God orchestrated things just right for her today so that the kids could recognize there is a smart, friendly little girl in that purple wheelchair.
Abbie also made a little star ornament this morning, with Auntie Kathleen helping her color it. It brought tears to my eyes because I so vividly recall the Sunday School craft Abbie made the day before she got hurt...the construction flower lei that she let me wear to lunch after church. It is sweet for me to see her doing some things she enjoys again, even if she has to do them a bit differently for now.
Our family was blessed that while Abbie was enjoying her time with the kids, the rest of us were able to be together in the service and really focus on the message. It was an important one for me to hear today, and proof that even the most obscure people can teach us meaningful lessons. Pastor McDaniel started off by asking if any of us knew who Shamgar was. To me he sounded like the Viking cousin of Scooby-Doo's buddy, but he was actually one of David's mighty men who served as a judge during a critical time in Israel's history.
The entire commentary about Shamgar takes one verse, Judges 3:31, "After Ehud was Shamgar son of Anath, who slew 600 Philistine men with an oxgoad. He also delivered Israel."
How much can one draw from that tiny verse? With just a little digging there is a gold mine to be had. You have to know that an oxgoad, as may be apparent from the name, was not a weapon of war but rather a 6 to 10 foot long wooden stick with an implement on the end normally used for sharpening plows. I thought a lot today about Shamgar, slaying 600 Philistines with a farming tool. I wondered if sometimes he wished he had a sword instead. I wondered if after Philistine #495 he got weary and discouraged. I wondered if he ever asked God "How much longer, " and "How many more can there be to come against me?"
If he did, I can really relate to him. After a wonderful booster like Abbie's enjoyment of Sunday School, this day has still ended in some weary tears. I feel like I am trying to fight a battle with the wrong tools most of the time. I know there is a race marked out for us, which implies a finish line, but I am tired. I do not want to quit when we may be all the way up to Philistine #552, and as I was praying through this I heard those very familiar words, "My grace is sufficient for thee." Comforting and challenging at the same time.
Ray has been a hero this weekend -- we had an event Friday night at the hotel just down from our house. He rented a room, tucked me into bed for a full night's sleep, and then came home to watch Abbie. I awoke to room service breakfast that included an enormous bowl of fresh berries, my absolute favorite treat. I was a new person. I guess, tonight, he and I are both a little discouraged that that wonderful recharge wore off so quickly. Please pray for our endurance and our faith...not in God, for that is unwavering, but rather the faith that we will walk this all the way to the end without faltering.
I'm sure much of interest happened in Shamgar's life, but yet it boiled down to "he slew 600 and delivered Israel." I wait in anticipation of the day when Abbie's story will be as concise, "She got hurt, God healed her and his Name was glorified. The End"
Wednesday, October 25, 2006
Test Results
We went to the endocrinologist first thing this morning to discuss Abbie's recent blood tests and Xray, which were ordered to determine if precocious puberty has begun, and how far she has progressed into it.
I was most concerned about the Xray, since it would tell us her bone age, thereby telling us roughly how many more years of growth she has left. I was praying to hear "8 or 9" and not "13 or 14". Because brain injuries predispose kids to precocious puberty, I would've been satisfied to hear we were just in the early stages of it. I was in no way prepared to hear what Dr. U. told us. He pulled out the results and explained that there is a two-standard deviation range, which equals about 1 year in Abbie's case, but given that, the radiologist felt that her bones are roughly equivalent to those of a five-year-old. FIVE!!! I started laughing with delight. Her bone age is totally normal. Praise God, praise God, praise God!!
We then went through the results of the blood tests, which focused on hormones related to puberty. They were all within the normal range. These results were correlated to something called the "Tanner Scale" which is used to measure stages of puberty. Abbie was at a Tanner Scale 1, the lowest level, for each hormone! Another hallelujah!
The cherry on top was her thyroid results. I had assumed she was hypothryoidic because of her low voltage. Her free T4 is normal and her TSH is on the low side, but within the normal range. WOW! I thought back to the timing of her blood test and realized we drew it just about the same time we were seeing her voltage really rise. So interesting to see objective data, like the MEAD numbers and blood tests, correlate and point to her marked improvement!
Dr. U. is a terrific physician, who really took time to explain and discuss not only these results, but the future plan for Abbie. We will repeat the labs and Xray in 6 months, just to stay on top of things. I told him, "We are not used to getting such great test results. This is a day to savor!!"
Thank you for your prayers, specifically about the Xray. Our future ballerina still has many years to grow!!
I was most concerned about the Xray, since it would tell us her bone age, thereby telling us roughly how many more years of growth she has left. I was praying to hear "8 or 9" and not "13 or 14". Because brain injuries predispose kids to precocious puberty, I would've been satisfied to hear we were just in the early stages of it. I was in no way prepared to hear what Dr. U. told us. He pulled out the results and explained that there is a two-standard deviation range, which equals about 1 year in Abbie's case, but given that, the radiologist felt that her bones are roughly equivalent to those of a five-year-old. FIVE!!! I started laughing with delight. Her bone age is totally normal. Praise God, praise God, praise God!!
We then went through the results of the blood tests, which focused on hormones related to puberty. They were all within the normal range. These results were correlated to something called the "Tanner Scale" which is used to measure stages of puberty. Abbie was at a Tanner Scale 1, the lowest level, for each hormone! Another hallelujah!
The cherry on top was her thyroid results. I had assumed she was hypothryoidic because of her low voltage. Her free T4 is normal and her TSH is on the low side, but within the normal range. WOW! I thought back to the timing of her blood test and realized we drew it just about the same time we were seeing her voltage really rise. So interesting to see objective data, like the MEAD numbers and blood tests, correlate and point to her marked improvement!
Dr. U. is a terrific physician, who really took time to explain and discuss not only these results, but the future plan for Abbie. We will repeat the labs and Xray in 6 months, just to stay on top of things. I told him, "We are not used to getting such great test results. This is a day to savor!!"
Thank you for your prayers, specifically about the Xray. Our future ballerina still has many years to grow!!
Monday, October 23, 2006
Flying
Even after two years I continue to be amazed at the creativity of Abbie's therapists. Today they got out a bright fuschia colored "sling swing" for her PT/OT session. We have used this before, but never like we did today. We laid the lycra swing fabric on a big wedge mat, then laid Abbie on the fabric in the prone position. After cinching up the swing Abbie looked like Supergirl, flying through the air with the greatest of ease. It was fun for her, and I really enjoy chances to watch her having fun.
After a twirl at flying, we did some more exciting things. We used the swing to support most of her body weight, which allowed us to get Abbie on her hands and knees. She amazed us as how relaxed each of her limbs were. Her knees were bending past 90 degrees while her arms stretched out to the floor as her soft hands touched the mat. She did so well we practiced crawling motions while she was suspended. This makes sense because she doesn't really have the strength yet to support her entire body weight, so when she is asked to she becomes tense under the pressure and strain. Without the requirement to bear all her weight she was able to relax and enjoy the movements.
The past couple of days have tested my commitment to reinforcing her language opportunities. I'm talking about Abbie having her switch at night. It has been a blessing to have her tell me when she is cold, wet, uncomfortable, needs to cough or even bored. However, it has not been conducive to great sleep. Last night I finally had to tell her, "Abbie, I am going to sleep. You have a new diaper, you are all comfy and warm, and Mommy is tired. If I hear your switch I won't be coming again." It took about six hits on her switch for her to believe that I really wasn't going to respond, and then she fell back to sleep. I smiled under the covers though, with how reminscent it was of toddler bedtime battles.
She is so "with it" now, that every interaction is a joy and filled with anticipation. Hearing her little voice as she was "crawling" today, with differing inflections, tones and the sweetness that has been missing for so long erased all the fatigue of sleepless nights. What we really need prayer for now are our own stamina and imagination, as we seek new ways to keep pushing her and new ideas to bring joy to her life.
After a twirl at flying, we did some more exciting things. We used the swing to support most of her body weight, which allowed us to get Abbie on her hands and knees. She amazed us as how relaxed each of her limbs were. Her knees were bending past 90 degrees while her arms stretched out to the floor as her soft hands touched the mat. She did so well we practiced crawling motions while she was suspended. This makes sense because she doesn't really have the strength yet to support her entire body weight, so when she is asked to she becomes tense under the pressure and strain. Without the requirement to bear all her weight she was able to relax and enjoy the movements.
The past couple of days have tested my commitment to reinforcing her language opportunities. I'm talking about Abbie having her switch at night. It has been a blessing to have her tell me when she is cold, wet, uncomfortable, needs to cough or even bored. However, it has not been conducive to great sleep. Last night I finally had to tell her, "Abbie, I am going to sleep. You have a new diaper, you are all comfy and warm, and Mommy is tired. If I hear your switch I won't be coming again." It took about six hits on her switch for her to believe that I really wasn't going to respond, and then she fell back to sleep. I smiled under the covers though, with how reminscent it was of toddler bedtime battles.
She is so "with it" now, that every interaction is a joy and filled with anticipation. Hearing her little voice as she was "crawling" today, with differing inflections, tones and the sweetness that has been missing for so long erased all the fatigue of sleepless nights. What we really need prayer for now are our own stamina and imagination, as we seek new ways to keep pushing her and new ideas to bring joy to her life.
Sunday, October 22, 2006
The Princess Calls
Friday's speech group really motivated me to find every way possible to provide language opportunities for Abbie. This means that I will now program her switch so that she can check herself in to every appointment and therapy session, for example. It also means that we keep the switch in her hand all day. As I was putting her to bed tonight, I thought, "Why stop there? Why not let her have her switch at night?" I couldn't think of too many things that would be more motivating than to be able to call me to her bed if she wanted or needed me.
So, I programmed in two messages: "Mommy, I need you!" and "Mommy, could you come here, please?" I tucked her in, put the switch in her hand and told her that if she needed me, she could call me. I didn't even get a chance to step away from the bed before she took me up on the offer. I laughed and was happy she'd caught on so quickly. That happiness continued over the next 30 minutes as she called me about 15 times. Sometimes she needed to cough and wanted to be sure I was there to help or clean it up. Other times she just wanted to chat. Putting myself in her shoes, it is a basic necessity to be able to call someone when you can't get out of bed...I don't know why it took me so long to think of this.
We saw another new skill today. I was putting her on her tummy, and she was doing a good job holding herself up on her elbows, which isn't new. She held her head off the floor, which also isn't new. What was surprised us was watching her lift her head until she was looking straight forward. I haven't really seen her be able to hold that position since just a couple months after her injury when she was using her high tone instead of her own strength. Another glimpse into the wonderful things happening in Abbie's body and brain right now.
So, I programmed in two messages: "Mommy, I need you!" and "Mommy, could you come here, please?" I tucked her in, put the switch in her hand and told her that if she needed me, she could call me. I didn't even get a chance to step away from the bed before she took me up on the offer. I laughed and was happy she'd caught on so quickly. That happiness continued over the next 30 minutes as she called me about 15 times. Sometimes she needed to cough and wanted to be sure I was there to help or clean it up. Other times she just wanted to chat. Putting myself in her shoes, it is a basic necessity to be able to call someone when you can't get out of bed...I don't know why it took me so long to think of this.
We saw another new skill today. I was putting her on her tummy, and she was doing a good job holding herself up on her elbows, which isn't new. She held her head off the floor, which also isn't new. What was surprised us was watching her lift her head until she was looking straight forward. I haven't really seen her be able to hold that position since just a couple months after her injury when she was using her high tone instead of her own strength. Another glimpse into the wonderful things happening in Abbie's body and brain right now.
Saturday, October 21, 2006
TGIF!
The end of a long but good week. Our angel of a nurse, Debbie, showed up for work two hours early because I "looked so sick" when she left yesterday. I almost cried with relief and gratitude. I had pushed it a couple days too far on the "no-sleep" front, and my body was collapsing yesterday. I got some rest yesterday and today and feel much better now.
I love going to PT when Lynette makes comments that match what we are seeing at home. She was bouncing Abbie on a ball and looked up at me in surpise, saying "Her spine is so straight now! There's no curve any more!" I laughed and nodded, and told her that Abbie is now a "29"!! We are also noticing that her troublesome left arm is relaxing and straightening out, and the range of motion in her ankles is better than it's ever been even though she hasn't been wearing orthotics since she was burned. God is at work! The blessing is that I am watching things change that we haven't been working on, which lifts such a tremendous burden from my shoulders. Any mom of a challenged child will tell you that there is never a night when you go to bed feeling you have done enough, and that's certainly how I feel. God is reminding me again that he doesn't need me to aid him in Abbie's healing, He is simply allowing me the privilege of joining in this adventure.
At her speech group today there was a special treat - Lisa, our therapist, brought her 12-week-old Yorkshire Terrier, Mara. The kids LOVED her, but I'm not so sure Mara was as enthusiastic. Abbie hit her switch innumerable times to say "I want to see Mara" and had wonderful soft hands and arms to pet her with.
I took the boys out for an errand tonight and returned to see Ray sitting in the family room with a visitor. We weren't expecting anyone, and I didn't recognize him from the back. Once we got inside I realize we had a special guest...Darrell from our PICU days. Darrell was a friend of a friend when Abbie got hurt, and came to the PICU for the first time with our mutual friend. After that he began showing up at midnight, saying "You should go get something to eat." Since I did the nightshift with Abbie, those midnight hamburgers were a lifesaver. He soon made a routine of coming at midnight and staying until around 4am. At the time he was a grad student and said simply, "You need help, and I'm able to be here..." What a blessing! We hadn't seen Darrell in almost 18 months, during which time he joined the Marine Reserve, went to Boot Camp and training and is now preparing for Officer Candidate School, with a Flight School follow-on. I was excited to hear that the plans we'd discussed in the wee hours had materialized! I was also excited to hear his reaction to Abbie, "Wow! The changes are so drastic since I haven't seen her in a while!" Love that!! She was talking with her switch and making lots of facial expressions for him. When I said that with her switch we've been able to confirm that she's cognitively intact he said, "Yea, isn't that what we were all saying from day 1?"
As I watched Darrell leave I was again overwhelmed by just how many hands have lifted us through this journey, and how our hearts will be bound to theirs forever.
I love going to PT when Lynette makes comments that match what we are seeing at home. She was bouncing Abbie on a ball and looked up at me in surpise, saying "Her spine is so straight now! There's no curve any more!" I laughed and nodded, and told her that Abbie is now a "29"!! We are also noticing that her troublesome left arm is relaxing and straightening out, and the range of motion in her ankles is better than it's ever been even though she hasn't been wearing orthotics since she was burned. God is at work! The blessing is that I am watching things change that we haven't been working on, which lifts such a tremendous burden from my shoulders. Any mom of a challenged child will tell you that there is never a night when you go to bed feeling you have done enough, and that's certainly how I feel. God is reminding me again that he doesn't need me to aid him in Abbie's healing, He is simply allowing me the privilege of joining in this adventure.
At her speech group today there was a special treat - Lisa, our therapist, brought her 12-week-old Yorkshire Terrier, Mara. The kids LOVED her, but I'm not so sure Mara was as enthusiastic. Abbie hit her switch innumerable times to say "I want to see Mara" and had wonderful soft hands and arms to pet her with.
I took the boys out for an errand tonight and returned to see Ray sitting in the family room with a visitor. We weren't expecting anyone, and I didn't recognize him from the back. Once we got inside I realize we had a special guest...Darrell from our PICU days. Darrell was a friend of a friend when Abbie got hurt, and came to the PICU for the first time with our mutual friend. After that he began showing up at midnight, saying "You should go get something to eat." Since I did the nightshift with Abbie, those midnight hamburgers were a lifesaver. He soon made a routine of coming at midnight and staying until around 4am. At the time he was a grad student and said simply, "You need help, and I'm able to be here..." What a blessing! We hadn't seen Darrell in almost 18 months, during which time he joined the Marine Reserve, went to Boot Camp and training and is now preparing for Officer Candidate School, with a Flight School follow-on. I was excited to hear that the plans we'd discussed in the wee hours had materialized! I was also excited to hear his reaction to Abbie, "Wow! The changes are so drastic since I haven't seen her in a while!" Love that!! She was talking with her switch and making lots of facial expressions for him. When I said that with her switch we've been able to confirm that she's cognitively intact he said, "Yea, isn't that what we were all saying from day 1?"
As I watched Darrell leave I was again overwhelmed by just how many hands have lifted us through this journey, and how our hearts will be bound to theirs forever.
Wednesday, October 18, 2006
Voltage Update
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.
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.
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.
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