I have dreaded opening emails and checking Facebook this week because so many of my near-drowning mom friends are describing very challenging, threatening situations with their children's health. Some of the kids are sicker than they have ever been since their initial injuries.
Could I ask you to specifically pray for:
*** Caleb: He had a very long febrile seizure the other night, ended up with collapsed lung(s) (?), and is in the PICU on a ventilator today. He is very, very sick and the doctors have not been optimistic. It seems from a recent update that he may be stabilizing a bit today, as far as blood pressure, but he remains extremely fragile. It appears he has a very bad pneumonia.
Caleb and his family are precious to us because they are here -- we see them at therapy, around town, and it's nice just knowing we are not alone on this island. He has a baby sister who is not quite three weeks old. I cannot imagine balancing everything that is on Kehau's plate right now, so please pray intensely for her, too.
*** Luke: Our little buddy in Tacoma was able to narrowly avoid the PICU this week, but remains hospitalized today, also with respiratory challenges. His mama, Sue, and I have traveled this road together almost from the beginning, and she has become a very special friend and encourager. Please pray that Luke continues his suddenly-speedy recovery, and is able to be discharged today. There is a birthday party tonight for his older sister, Natalie, and I know they so want to celebrate it as a united family.
*** Aiden: I got to meet Aiden's exceptionally creative and crafty mom, Erin, at the near-drowning retreat in November. He is the eldest of three, so I don't know how Erin finds the time to out-cake-decorate Martha Stewart and crochet masterpieces, but today finds her running to the pharmacy and caring for a very sick little boy. Again - respiratory. Ugh. Please pray for his quick recovery!
*** Santana: another little boy suffering from respiratory challenges, with another truly talented and creative mom who focuses on film production. He is the middle of three boys, and I have missed hearing from Lindsey lately as Santana has been too ill for her to be online much. I don't know the details, but I do know that prayer changes things, so please lift him up.
One common theme (and no...it's not the gender)...what stalks our fragile children is respiratory infection. Each of our families know too well that what our children usually die from is these infections that get out of control. The stress, fear, and worry can be overwhelming as things begin to take a wrong turn. I have felt this weight even just praying for these families, so I am asking you to join me, as they just cannot bear it on their own.
God bless you!
Tuesday, February 15, 2011
Wednesday, February 02, 2011
A Chance to Change the Future (ABR Post #1)
Today I offer you an invitation to help change the path travelled by children with Cerebral Palsy and Brain injuries!
I have spent the last few months intensively researching a therapy approach called Advanced Biomechanical Rehabilitation (ABR).
It is:
* Family-Centered: changing the model of bringing children to therapy centers for years on end. Parents become the experts, and the therapy is provided in the home.
* Gentle/Non-Invasive: There is no danger of hurting a child doing ABR. It is not unpleasant or painful for them.
* Body-focused: It does not aim to heal, rewire or reprogram the brain. It's goal is to improve the structural and functional elements of the body.
* Effective: I have never found a physical rehabilitation approach that resulted in gains for children with CP and brain injuries. Perhaps they slow the ongoing decline in the body, but functional gains are rare, particularly in the most affected children. The following video stunned me:
I found that an NIH-funded study was conducted in the province of Ontario which included every child diagnosed with Cerebral Palsy born in 1992. Some families did everything possible to help improve the physical condition and capabilities of their children, while others did not have the means to do so.
The study found that it did not make a difference...no matter what was done, or not done, the children's path followed an almost predestined curve. The most affected children reached their peak of motor capability at age three, and actually began to decline as they reached 10. Even the least affected children reached their peak before 10.
As a mother I have sensed this curve. I have fought against it, and tried in every way possible not to look it in the face. But, it is real, and, as we have found in these years of effort with Abbie, it is accurate.
And, it is not only the lack of improvement in movement capabilities, but even more pressing are the health issues and invasive interventions that accompany that unbudging curve. When liquid medications fail, we move to injections. When these don't work, it's time for snipping tendons and muscles. When these methods don't stop the contortions, families consent to hip surgeries, spinal rod surgeries and the complications these bring, often while not halting the downward spiral.
We don't make these choices because they result in great outcomes, or "fix" our precious children. We just haven't had any options other than "bad" and "really bad".
Well, my time spent looking into the mouth of the dragon eventually lead me to a third option, "responsible dreaming." It is not a silver-bullet or overnight magic, but ABR offers the family willing to work for it, the chance to bend the curve in their child's life.
If you watched that video, realize that the boy shown falls into the "most affected" category (GMFCS V), so his body should be fairly resistant to attempts at helping it improve.
I have spent the last few months intensively researching a therapy approach called Advanced Biomechanical Rehabilitation (ABR).
It is:
* Family-Centered: changing the model of bringing children to therapy centers for years on end. Parents become the experts, and the therapy is provided in the home.
* Gentle/Non-Invasive: There is no danger of hurting a child doing ABR. It is not unpleasant or painful for them.
* Body-focused: It does not aim to heal, rewire or reprogram the brain. It's goal is to improve the structural and functional elements of the body.
* Effective: I have never found a physical rehabilitation approach that resulted in gains for children with CP and brain injuries. Perhaps they slow the ongoing decline in the body, but functional gains are rare, particularly in the most affected children. The following video stunned me:
While the changes are notable, a little background will make clear how unusual these changes are.
I found that an NIH-funded study was conducted in the province of Ontario which included every child diagnosed with Cerebral Palsy born in 1992. Some families did everything possible to help improve the physical condition and capabilities of their children, while others did not have the means to do so.
The study found that it did not make a difference...no matter what was done, or not done, the children's path followed an almost predestined curve. The most affected children reached their peak of motor capability at age three, and actually began to decline as they reached 10. Even the least affected children reached their peak before 10.
As a mother I have sensed this curve. I have fought against it, and tried in every way possible not to look it in the face. But, it is real, and, as we have found in these years of effort with Abbie, it is accurate.
And, it is not only the lack of improvement in movement capabilities, but even more pressing are the health issues and invasive interventions that accompany that unbudging curve. When liquid medications fail, we move to injections. When these don't work, it's time for snipping tendons and muscles. When these methods don't stop the contortions, families consent to hip surgeries, spinal rod surgeries and the complications these bring, often while not halting the downward spiral.
We don't make these choices because they result in great outcomes, or "fix" our precious children. We just haven't had any options other than "bad" and "really bad".
Well, my time spent looking into the mouth of the dragon eventually lead me to a third option, "responsible dreaming." It is not a silver-bullet or overnight magic, but ABR offers the family willing to work for it, the chance to bend the curve in their child's life.
If you watched that video, realize that the boy shown falls into the "most affected" category (GMFCS V), so his body should be fairly resistant to attempts at helping it improve.
Weeks of intense research convinced me that ABR will be the best approach to accomplish physical recovery in Abbie. But, over the years we have been blessed to meet families of other special children, and I knew it could really help them as well.
So, instead of flying Abbie to the ABR Clinic in Montreal for the initial evaluation and training, I am putting together a pilot group of families, and the Montreal team is coming here the first week of March. During that visit, they will also provide training to professionals so that eventually, if the results come as we believe they will, ABR in Hawaii can grow to the point of being available for every child who needs it.
So, what is it??
It is a hands-on, gentle, non-invasive therapy provided in the home by family and caregivers. The primary target is the myofascia, and the goals include increasing the volume and strength of the chest and abdominal cavities. It is a completely new way of looking at the bodies of children with Cerebral Palsy and brain injuries...and it's about time!
Outcomes for these children have not changed much in the last 100 years. Splints are now made of fiberglass, neoprene and velcro instead of wood and leather. We can seat kids in shiny pink or bright red wheelchairs, and surgeries can keep their bodies looking more normal. But, they are not regaining function, they are not becoming more physically independent.
That has got to change. While we await the fruit of brain research ongoing in many sectors, we must help our children's bodies to heal and strengthen. That is the mission of ABR -- not fixing brains, but fixing bodies.
For more information about ABR you can go to www.blyum.com, and www.blyum.typepad.com
I hope this is not information overload, but I wanted to give you a glimpse of the new terrain that has us so encouraged. And, I need to ask for your help in making it happen.
The opportunity to have the ABR team come arose suddenly, and we've been working feverishly to put it all together. We have many of the pieces in place, but the big hurdle now is finances. The initial evaluation and 5 day family training cost $1900 per child. We must also raise approximately $3000 to cover the travel and lodging expenses of the team. In other words, we need to raise about $15,000 in one month.
I know that if you are reading this blog, you care about Abbie. Ray and I had planned on doing ABR from the beginning of this process, and will fund her portion. However, we have some incredible, dedicated families who didn't even know what ABR is until December, and certainly hadn't budgeted for it. Would you help us start this pilot group?
If 100 of you out there could find $150 to donate, we would be ready to go!
You can donate at the Chip-in widget to the right of the posting. I will deposit all the money into a newly created fund: The Rehab Family Training Fund of the Kapiolani Health Foundation. This will not be a deductible expense if you do it this way.
If you would like to donate directly to a 501(c)3 for tax purposes, you can send a check to:
Kapiolani Health Foundation
Harbour Court
55 Merchant Street
Honolulu, Hawaii 96813
Please put "Rehab Family Training Fund" in the memo section to ensure the money is routed properly.
I post this update with prayers of thanksgiving for your support all these years, and with hope for the future of many children whose lives will be improved because of ABR.
Saturday, January 29, 2011
What My Son Taught Me This Week
At some point early in this journey several people sent me the poem about a butterfly emerging from its cocoon. A compassionate onlooker sees the butterfly struggling to break free, and helps by breaking the cocoon open and releasing the butterfly. As a result of this kindness, the butterfly perishes. The struggle itself was an imperative part of the process, forcing fluid to move throughout the structures of the wings, preparing them for flight. The absence of the struggle left the butterfly unable to survive.
I have taken comfort in this analogy as I've watched Abbie battle against one layer of her cocoon after another. I've witnessed her spirit being strengthened to a degree I cannot fathom nor express. But, yet, in a corner of my Mother-Heart, I still yearn to help her, to ease the fight, to breach the cocoon for her.
My son, Kyle, is an avid photographer. This week he found a group of bushes at school that harbor dozens of cocoons. As he was snapping away, capturing collections of caterpillars, close-ups of Monarch wings, and the fragility of suspended cocoons, he witnessed a curious behavior.
As a newly emerged butterfly lay wet and vulnerable on the grass, another butterfly would arrive to lift it to a leaf, where it could dry, gain its strength and eventually flitter away to join the community. He captured the arrival of the rescue butterfly in the photo below:
I love knowing the "rest of the story". It doesn't end with a solitary emergence from the struggle. None of us learn to fly alone.
I have taken comfort in this analogy as I've watched Abbie battle against one layer of her cocoon after another. I've witnessed her spirit being strengthened to a degree I cannot fathom nor express. But, yet, in a corner of my Mother-Heart, I still yearn to help her, to ease the fight, to breach the cocoon for her.
My son, Kyle, is an avid photographer. This week he found a group of bushes at school that harbor dozens of cocoons. As he was snapping away, capturing collections of caterpillars, close-ups of Monarch wings, and the fragility of suspended cocoons, he witnessed a curious behavior.
As a newly emerged butterfly lay wet and vulnerable on the grass, another butterfly would arrive to lift it to a leaf, where it could dry, gain its strength and eventually flitter away to join the community. He captured the arrival of the rescue butterfly in the photo below:
I love knowing the "rest of the story". It doesn't end with a solitary emergence from the struggle. None of us learn to fly alone.
Monday, January 24, 2011
Lovely Locks of Love
Last Monday, while getting my hair cut, I was thinking that it was time to lighten the load on Abbie's poor head. So, I asked my hairdresser if she could cut Abbie's hair so that we could donate it to Locks of Love, an organization that provides wigs to people in need.
When Nell said, "Yea, sure" and we scheduled the cut for the next day, I got a little nervous. We would have to cut 10 inches off in order to donate it, and I was trying to envision Abbie in a bob. I spent some extra time that night brushing her hair. It really was beautiful, so I tried to imagine another little girl somewhere, taking medication to save her life but sacrificing her hair in the process...the hair that we wouldn't miss, that would grow back in a few months, could make tremendous difference in the life of that little girl.
I spent the couple hours prior to the appointment at a beautiful lunch on the beach with some great friends, which was a wonderful distraction. I was also a little concerned about how Abbie would do during the cut, how I would hold her, if she would tolerate it, etc, etc. But, as soon as I got home it was time to go - no time to dwell on it.
Two of my lunchtime friends, Katie and Liberty, surprised me at the salon - which is why I have pictures to share.
Her hair is still past her shoulders, so it won't be long before we can donate again. Abbie was very excited by the prospect of helping another little girl!
She continues to make the most of every chance she gets to practice with the power chair. We are only going to therapy every other week now, so the opportunities are precious. Today she learned how to turn the chair both ways (previously we only had the right-handed head switch activated). It didn't take her very long to figure it out!
At the end of the session, she had stopped for a moment. The OT said, "OK, Abbie, I am going to turn the chair off now."
Immediately came the mechanical equivalent of "I don't think so" as Abbie commenced spinning again. I love to see her in charge of something, and able to show a little bit of attitude!
God bless!
When Nell said, "Yea, sure" and we scheduled the cut for the next day, I got a little nervous. We would have to cut 10 inches off in order to donate it, and I was trying to envision Abbie in a bob. I spent some extra time that night brushing her hair. It really was beautiful, so I tried to imagine another little girl somewhere, taking medication to save her life but sacrificing her hair in the process...the hair that we wouldn't miss, that would grow back in a few months, could make tremendous difference in the life of that little girl.
I spent the couple hours prior to the appointment at a beautiful lunch on the beach with some great friends, which was a wonderful distraction. I was also a little concerned about how Abbie would do during the cut, how I would hold her, if she would tolerate it, etc, etc. But, as soon as I got home it was time to go - no time to dwell on it.
Two of my lunchtime friends, Katie and Liberty, surprised me at the salon - which is why I have pictures to share.
Before:
The Big Snip. Although we only needed ten inches, we took off a little bit more so make the final length a little better. I knew her hair was long, but not this long!
The Donation Ponytail:
Getting her hair blow-dried and styled.
Afterwards. We both survived! Sorry you can't see the style very well. I was hoping the cut would bring out her curls, but the stylist layered and textured it quite a bit. So, it's a lot lighter for Abbie, but doesn't curl as much.
Her hair is still past her shoulders, so it won't be long before we can donate again. Abbie was very excited by the prospect of helping another little girl!
She continues to make the most of every chance she gets to practice with the power chair. We are only going to therapy every other week now, so the opportunities are precious. Today she learned how to turn the chair both ways (previously we only had the right-handed head switch activated). It didn't take her very long to figure it out!
At the end of the session, she had stopped for a moment. The OT said, "OK, Abbie, I am going to turn the chair off now."
Immediately came the mechanical equivalent of "I don't think so" as Abbie commenced spinning again. I love to see her in charge of something, and able to show a little bit of attitude!
God bless!
Wednesday, January 05, 2011
Memories of December
A grey fog of illness, sleep deprivation, and stress tinged with sadness consumed December, but now that the calendar has flipped, the haze has receded to reveal some moments worth remembering...and sharing. This may be a bit long, so I will break it into parts so that you can read it in installments if you wish.
Part I: Abbie Passes the Test
Several months ago, one of Abbie's friends, Shari, went to San Diego to have a wheelchair custom-fit for her. I didn't think much about it at the time, other than "I hope they have a nice time at the zoo." Turns out, Shari's mainland adventure may well change Abbie's life.
Kevin, the wheelchair technician that built Shari's chair, delivered it to her in early December. While he was here Abbie had the opportunity to try out a power chair similar to Shari's to see if, as we all believe, she is ready for one of her own.
My confidence heading into the trial faded a bit as the team said they wanted Abbie to control it using a head switch. Hmmmm....she had never used a head switch in her life. Not once. For her to understand that 1) she could control the movement of the chair, and 2) she needed to use her head to do it....yea, not so sure about that. Head control isn't really our thing, if you know what I mean.
I'm going to let the video just speak for itself:
In the span of fifteen minutes we introduced Abbie to the head switch, went through the phase of her just spinning ( and spinning and spinning) because she was so excited about moving, and reached the point where she could spin and stop where she wanted to. In other words: she aced the test!
And, all this happened in a loaner chair that didn't support her optimally!
As you may have noted in the video, the opportunity to move also elicited more vocalization from Abbie. Everything really does all work together.
As we got home after that amazing appointment, I stepped around Abbie to open the door. She began sobbing -- big fat tears, red splotchy face, wailing -- the only times I have seen her like that have involved broken bones and torn ligaments. I wondered if somehow I had hurt her leg with the bag I was carrying.
Nope.
She just wanted the "chair she could move." She continued to cry as I tried to reassure her that we are going to do everything possible to get her a chair of her own to drive. But, I had to be honest and also tell her that these things take time, and sometimes require a fight.
Those pleading tears, though, ensure that we are going to fight this fight no matter how long it takes!
We are working with Kevin and our entire rehab team, and will hopefully submit a request for a power wheelchair AND a computerized communication device in the near future -- both will work with the same set of controls, so Abbie will only have to master one set of movements.
Technology can give Abbie legs and a voice -- watch out world!
Part II: The Nutcracker (Almost) Nightmare
Ever since Auntie Debbie gave Abbie her first Nutcracker DVD five years ago, Abbie has worn out many copies and many versions. She absolutely loves to watch it, and even listening to the music alone makes her happy.
This fall, my friend Nina told me that she was giving Abbie tickets to the Nutcracker for Christmas. I could hardly contain my glee and anticipation. Abbie was thrilled, and commenced re-watching every Nutcracker DVD we have, from Barbie to MacCauley Culkin and the NYC Ballet. This was going to be magical.
Then, at the beginning of December she got sick. And, she didn't get better.
This chest infection kept lingering, and getting worse. It's unlike her to be sick for more than three days, and it had been over two weeks as the Nutcracker date neared. I prayed, prayed, prayed for her oxygen needs to decrease so that she could go.
The weather was not cooperating, as the days seemed to alternate between voggy, steamy grey, and rainy, stormy grey. We had tickets for the Sunday matinee, but by Friday evening she was still not well. I debated calling Nina to cancel, but didn't have the heart to stop hoping.
Knowing what was on the line, Abbie mustered the strength to get off the oxygen, get dressed up, and out into the weather that made us look both ways for Noah's ark before venturing into intersections. It was an u.g.l.y. day, but Nina had sent me a VIP parking pass that would allow us to unload Abbie right next to the theatre, and eliminated the stress of finding an all-too-rare van-accessible handicapped space.
I followed the directions on the parking ticket, but when I approached the driveway, there was a white car blocking it. I pulled in right behind it, hoping it would move. Instead, police lights started flashing in the rear window.
"Where's the VIP parking?" I yelled out into the rain.
"I don't know...you have got to keep moving. Move along - now!" was the none-too-polite answer.
Hrrmph.
I drove around to the entry to the normal parking, and when I handed the parking ticket to the attendant she told me that I needed to go around to the valet. When I explained that there wasn't anyone over there, she pulled out her walkie-talkie and assured me she would have them be out there to meet me.
Tick, tick, tock. It was now 20 minutes to show time.
I went around a very long block again, only to find no valets, and the same white car blocking the road. This time I got out of the van to inquire, since the directions on the ticket clearly said to enter at this driveway.
The officer simply said, "I don't have any idea about VIP parking. I can't help you, I'm sorry. But, I have my orders, and you have to move along right now."
Tick, tick, tock. 10 minutes to show time.
I got in the line to the parking garage...again. I paid to enter, and then slowly wove my way through, only to find that there were not any handicapped stalls left. None.
At this point I began to sob for Abbie. We weren't going to make it into the ballet. I had no idea where we could park, and time was slipping away. I called my friend Nina to let her know, and received a surprising explanation for all the confusion.
"Mrs. Obama is here, " she said.
Aha! Now it all made sense. The "police officer" in the white car was actually Secret Service. The VIP parking had disappeared to make way for secured parking for the Obama entourage. Someone telling me that...or something other than "I don't know - drive around", would have been kind.
As I drove through the rain in desperation I had thoughts that weren't rational, but were real and raw. "That family can see the Nutcracker at any ballet they choose....they could have a command performance at the Bolshoi tomorrow if they wanted. This is Abbie's ONE day, her one special day. Every day is special for them." It all seemed so heartbreakingly unfair.
My phone rang again, and Nina said, "Just hang on. I am going to talk to the Secret Service."
"Yea...good luck with that," I thought. So, I was shocked when she rang right back to say, "They will be waiting for you at the driveway, and will escort you in."
They did. I turned over my keys to them, and we ran through the rain to the entrance. We made it inside, drenched but relieved, to hear the strains of Tchaikovsky's beautiful music emanating from behind the closed doors.
Doors we were then told we may not open. We were too late. The ballet had begun and we could not be admitted after the curtain had been raised.
I was too emotionally drained at this point to even raise an intelligible protest. Genevieve, Abbie, Nina and I just stood there, looking at the door. I was in disbelief, and hoped that somehow having the chance to come to the theatre and hear the music would be enough for this year for Abbie.
Nina was having none of it, swinging back into Superwoman mode, and saying again, "I am going to talk to them."
A couple minutes later they ushered us in, telling us we couldn't sit in our ticketed seats near the stage, but could sit in the back. At first this ticked me off, too, but in the end I think it worked out better because Abbie could see the whole stage.
Once we were settled, the music worked its magic and the desperation of the previous hour melted away into the joy for which we'd hoped. It was beautiful, brilliant, and very, very special. Afterwards, Abbie was ushered backstage by Pamela Taylor-Tongg, the gracious director of Ballet Hawaii.
Abbie was able to meet one of the Spanish Dancers, still in costume:
And, after rolling onto the big stage, she met the Snow Queen. Abbie looked at her with eyes that just said, "I am so in love!!"
With a friend like Nina, overcoming Secret Service roadblocks and usher door locks alike, Abbie was blessed with a very, very special day!
Part III: The Holidays
Our holidays normally begin on 12/23, Chase's birthday. This year was going to be a special one, because he turned 20. Unfortunately, Abbie took a real turn for the worse that day, so Chase's birthday dinner consisted of leftover pizza and chicken wings from the twins' holiday party the night before, and his birthday "cake" was a banana cream pie one of the twins' friends brought to the party (thanks, Nishiyama family!), which Chase had eaten one piece out of. Nice, huh?
Immediately after Chase opened his presents, Kyle and I loaded Abbie up and took her to the ER. I'd spent a good amount of time packing everything else we would need for a hospital stay, since it certainly looked as if my girl and I would be spending Christmas at Kapiolani.
She had spiked a fever, her oxygen needs were even higher, and her secretions were now discolored. Ugh. But, the chest Xray came back negative for pneumonia, and her flu swabs were negative as well! Woo-hoo! When we go to the ER my rule generally is that if she doesn't need IV antibiotics or intubation, then we just need to go home because I can do everything else here without exposing her to all the germs wafting around in the hospital.
When I cut the hospital bands off her arm later that night as I tucked her into her bed, I thought "there is my gift!"
Because she was not well, and since Genevieve's children had gone ahead of her to the Philippines, Genevieve stayed with Abbie as we went to dinners on Christmas Eve and Christmas. These were difficult and painful decisions, but were best for her and our family. She had a blast on Christmas morning, and was content to hang out with Genevieve otherwise.
Our family is richly blessed with good friends here, so we have some very warm memories of Christmas Eve dinner on the beach, and singing Christmas carols on Christmas night.
In Hawaii, New Year's Eve is an all-out bash, with more fireworks than Fourth of July. I was nervous to take Abbie to the party we always attend, as the air quality gets pretty poor as the the evening wears on. I almost forgot that for Abbie even more important than clean air is being included. She was tired of being left home, and was so terrifically content that she breathed better than she had in a month.
We bid aloha to 2010 deafened by strings of Chinese firecrackers, and welcomed 2011 looking up through the smoke to silent stars. This is going to be a year of good fun, great adventures, and God willing, miracles for many who are waiting.
May God bless you!
Part I: Abbie Passes the Test
Several months ago, one of Abbie's friends, Shari, went to San Diego to have a wheelchair custom-fit for her. I didn't think much about it at the time, other than "I hope they have a nice time at the zoo." Turns out, Shari's mainland adventure may well change Abbie's life.
Kevin, the wheelchair technician that built Shari's chair, delivered it to her in early December. While he was here Abbie had the opportunity to try out a power chair similar to Shari's to see if, as we all believe, she is ready for one of her own.
My confidence heading into the trial faded a bit as the team said they wanted Abbie to control it using a head switch. Hmmmm....she had never used a head switch in her life. Not once. For her to understand that 1) she could control the movement of the chair, and 2) she needed to use her head to do it....yea, not so sure about that. Head control isn't really our thing, if you know what I mean.
I'm going to let the video just speak for itself:
In the span of fifteen minutes we introduced Abbie to the head switch, went through the phase of her just spinning ( and spinning and spinning) because she was so excited about moving, and reached the point where she could spin and stop where she wanted to. In other words: she aced the test!
And, all this happened in a loaner chair that didn't support her optimally!
As you may have noted in the video, the opportunity to move also elicited more vocalization from Abbie. Everything really does all work together.
As we got home after that amazing appointment, I stepped around Abbie to open the door. She began sobbing -- big fat tears, red splotchy face, wailing -- the only times I have seen her like that have involved broken bones and torn ligaments. I wondered if somehow I had hurt her leg with the bag I was carrying.
Nope.
She just wanted the "chair she could move." She continued to cry as I tried to reassure her that we are going to do everything possible to get her a chair of her own to drive. But, I had to be honest and also tell her that these things take time, and sometimes require a fight.
Those pleading tears, though, ensure that we are going to fight this fight no matter how long it takes!
We are working with Kevin and our entire rehab team, and will hopefully submit a request for a power wheelchair AND a computerized communication device in the near future -- both will work with the same set of controls, so Abbie will only have to master one set of movements.
Technology can give Abbie legs and a voice -- watch out world!
Part II: The Nutcracker (Almost) Nightmare
Ever since Auntie Debbie gave Abbie her first Nutcracker DVD five years ago, Abbie has worn out many copies and many versions. She absolutely loves to watch it, and even listening to the music alone makes her happy.
This fall, my friend Nina told me that she was giving Abbie tickets to the Nutcracker for Christmas. I could hardly contain my glee and anticipation. Abbie was thrilled, and commenced re-watching every Nutcracker DVD we have, from Barbie to MacCauley Culkin and the NYC Ballet. This was going to be magical.
Then, at the beginning of December she got sick. And, she didn't get better.
This chest infection kept lingering, and getting worse. It's unlike her to be sick for more than three days, and it had been over two weeks as the Nutcracker date neared. I prayed, prayed, prayed for her oxygen needs to decrease so that she could go.
The weather was not cooperating, as the days seemed to alternate between voggy, steamy grey, and rainy, stormy grey. We had tickets for the Sunday matinee, but by Friday evening she was still not well. I debated calling Nina to cancel, but didn't have the heart to stop hoping.
Knowing what was on the line, Abbie mustered the strength to get off the oxygen, get dressed up, and out into the weather that made us look both ways for Noah's ark before venturing into intersections. It was an u.g.l.y. day, but Nina had sent me a VIP parking pass that would allow us to unload Abbie right next to the theatre, and eliminated the stress of finding an all-too-rare van-accessible handicapped space.
I followed the directions on the parking ticket, but when I approached the driveway, there was a white car blocking it. I pulled in right behind it, hoping it would move. Instead, police lights started flashing in the rear window.
"Where's the VIP parking?" I yelled out into the rain.
"I don't know...you have got to keep moving. Move along - now!" was the none-too-polite answer.
Hrrmph.
I drove around to the entry to the normal parking, and when I handed the parking ticket to the attendant she told me that I needed to go around to the valet. When I explained that there wasn't anyone over there, she pulled out her walkie-talkie and assured me she would have them be out there to meet me.
Tick, tick, tock. It was now 20 minutes to show time.
I went around a very long block again, only to find no valets, and the same white car blocking the road. This time I got out of the van to inquire, since the directions on the ticket clearly said to enter at this driveway.
The officer simply said, "I don't have any idea about VIP parking. I can't help you, I'm sorry. But, I have my orders, and you have to move along right now."
Tick, tick, tock. 10 minutes to show time.
I got in the line to the parking garage...again. I paid to enter, and then slowly wove my way through, only to find that there were not any handicapped stalls left. None.
At this point I began to sob for Abbie. We weren't going to make it into the ballet. I had no idea where we could park, and time was slipping away. I called my friend Nina to let her know, and received a surprising explanation for all the confusion.
"Mrs. Obama is here, " she said.
Aha! Now it all made sense. The "police officer" in the white car was actually Secret Service. The VIP parking had disappeared to make way for secured parking for the Obama entourage. Someone telling me that...or something other than "I don't know - drive around", would have been kind.
As I drove through the rain in desperation I had thoughts that weren't rational, but were real and raw. "That family can see the Nutcracker at any ballet they choose....they could have a command performance at the Bolshoi tomorrow if they wanted. This is Abbie's ONE day, her one special day. Every day is special for them." It all seemed so heartbreakingly unfair.
My phone rang again, and Nina said, "Just hang on. I am going to talk to the Secret Service."
"Yea...good luck with that," I thought. So, I was shocked when she rang right back to say, "They will be waiting for you at the driveway, and will escort you in."
They did. I turned over my keys to them, and we ran through the rain to the entrance. We made it inside, drenched but relieved, to hear the strains of Tchaikovsky's beautiful music emanating from behind the closed doors.
Doors we were then told we may not open. We were too late. The ballet had begun and we could not be admitted after the curtain had been raised.
I was too emotionally drained at this point to even raise an intelligible protest. Genevieve, Abbie, Nina and I just stood there, looking at the door. I was in disbelief, and hoped that somehow having the chance to come to the theatre and hear the music would be enough for this year for Abbie.
Nina was having none of it, swinging back into Superwoman mode, and saying again, "I am going to talk to them."
A couple minutes later they ushered us in, telling us we couldn't sit in our ticketed seats near the stage, but could sit in the back. At first this ticked me off, too, but in the end I think it worked out better because Abbie could see the whole stage.
Once we were settled, the music worked its magic and the desperation of the previous hour melted away into the joy for which we'd hoped. It was beautiful, brilliant, and very, very special. Afterwards, Abbie was ushered backstage by Pamela Taylor-Tongg, the gracious director of Ballet Hawaii.
Abbie was able to meet one of the Spanish Dancers, still in costume:
And, after rolling onto the big stage, she met the Snow Queen. Abbie looked at her with eyes that just said, "I am so in love!!"
With a friend like Nina, overcoming Secret Service roadblocks and usher door locks alike, Abbie was blessed with a very, very special day!
Part III: The Holidays
Our holidays normally begin on 12/23, Chase's birthday. This year was going to be a special one, because he turned 20. Unfortunately, Abbie took a real turn for the worse that day, so Chase's birthday dinner consisted of leftover pizza and chicken wings from the twins' holiday party the night before, and his birthday "cake" was a banana cream pie one of the twins' friends brought to the party (thanks, Nishiyama family!), which Chase had eaten one piece out of. Nice, huh?
Immediately after Chase opened his presents, Kyle and I loaded Abbie up and took her to the ER. I'd spent a good amount of time packing everything else we would need for a hospital stay, since it certainly looked as if my girl and I would be spending Christmas at Kapiolani.
She had spiked a fever, her oxygen needs were even higher, and her secretions were now discolored. Ugh. But, the chest Xray came back negative for pneumonia, and her flu swabs were negative as well! Woo-hoo! When we go to the ER my rule generally is that if she doesn't need IV antibiotics or intubation, then we just need to go home because I can do everything else here without exposing her to all the germs wafting around in the hospital.
When I cut the hospital bands off her arm later that night as I tucked her into her bed, I thought "there is my gift!"
Because she was not well, and since Genevieve's children had gone ahead of her to the Philippines, Genevieve stayed with Abbie as we went to dinners on Christmas Eve and Christmas. These were difficult and painful decisions, but were best for her and our family. She had a blast on Christmas morning, and was content to hang out with Genevieve otherwise.
Our family is richly blessed with good friends here, so we have some very warm memories of Christmas Eve dinner on the beach, and singing Christmas carols on Christmas night.
In Hawaii, New Year's Eve is an all-out bash, with more fireworks than Fourth of July. I was nervous to take Abbie to the party we always attend, as the air quality gets pretty poor as the the evening wears on. I almost forgot that for Abbie even more important than clean air is being included. She was tired of being left home, and was so terrifically content that she breathed better than she had in a month.
We bid aloha to 2010 deafened by strings of Chinese firecrackers, and welcomed 2011 looking up through the smoke to silent stars. This is going to be a year of good fun, great adventures, and God willing, miracles for many who are waiting.
May God bless you!
Monday, December 13, 2010
Abbie's Dolphin Day
Abbie getting close enough to feel the dolphin's heartbeat.
Paying attention to the thump-thump-thump
The lifejacket is smooshing her face, but you can still see her grin. She loved it! Glad I put her in a wetsuit, though, because the water was a chilly.
There were several families there with their children who are also clients of the rehab department at Kapiolani.
We saw this little guy on the way out.
Abbie also got to feed the dolphins lots of slimy fish, and received many gentle dolphin kisses in return. Quite a keepsake day!
Lots going on here which has prevented this posting until now. We had a nice, quiet Thanksgiving at home. Since early December Abbie has had something going on in her chest, which has made sleep fleeting for her and I. We are glad to have Chase home from college -- he arrived last Saturday!
More to follow (soon I hope!)
God Bless!
Monday, November 22, 2010
Love is Stronger than Death; Laughter Wipes Away Tears
It's taken me several days to catch up on sleep and digest the events of last weekend's Near-Drowning Mom's Retreat (the first annual, I might add). It was like the longest slumber party I have ever attended. In the weeks leading up to it, I was concerned that it might be really heavy and sad, with many stored tears let loose.
Ha!
Or, more appropriately, hahahahahahaha!!
I don't recall ever having laughed so much in my life. Perhaps it was because for one smidgeon of time each of us were "normal", and our lives were just like everyone else's. Perhaps it was because we could make jokes that we would never say nor tolerate in the outside world.
Here's one example: we'd just come back after a long day in Seattle and were determined to go in the hot tub even though it was 11:30pm. We dashed through the cold air, and hopped in...only to find that for some reason we were now submerged in a Lukewarm Tub. The temperature was only 90 degrees, and we were stuck. It was way too cold outside to make a run for it without being heated up by the tub, but it was way too tepid in the tub to be enjoyable.
We decided we would push, poke, tickle, talk to and yell at the tub controls until it began heating the water (which eventually worked.). Two hours later it was at 99 degrees and we were feeling pretty toasty, comparatively. As the clock neared 2am, our eyes were drooping. One mom said, "Now, I don't think it would be too funny if the headline tomorrow read '5 moms drown in hot tub at near-drowning retreat.'"
A line like that would have made us cry or yell in the real world, but here in our bubble of understanding and shared struggles (and sleep deprivation) it was just plain funny.
Most of all, though, I think we laughed so much because during the time each of us has been on this road (varying from 2-8 years) we have had to choose over and over and over again to laugh instead of cry. We have highly refined senses of humor, and our instant sisterhood allowed us to poke fun at each other's expense from minute one.
Annie is the mom of Isabelle, who drowned 13 days after Abbie did. We have been in touch since that first incomprehensible summer when both our girls were in rehab, and I have been longing to meet her. She was the last to arrive, at 1:30am. I, on the other hand, flew over night the night before and had been at the house since 9am...waiting, and welcoming, and waiting some more. Finally, she walked in, gave me a hug, said "hi" and then...."You are SO SHORT!! I just really thought you'd be taller."
Yep, after 6 years of shared trials THAT was the first thing out of her mouth....and thus it began. Sharp tongues and sharper wits kept the weekend lively.
The other thing that was overwhelming, in hearing everyone's stories, was not the loss or the heartache, but the goodness of people. It is staggering, truly, the kindnesses that have been showered on our children and our families. Teresa, Samuel's mom told of being discharged with no nursing care -- an unfathomable load to carry. The nurses at the ER where Samuel first went heard about this and organized a volunteer schedule of shifts that covered two months. The meals, the prayers, the financial help -- THAT was what we talked about in awe. Each of us is so, so grateful.
While I had looked forward to meeting these women, I had not begun to conceive how powerful it would be. The safety of shared experience, the freedom from judgement or the need to explain, the concentration of hope and faith, and the permission to be a little (lot) silly.
It may sound overly sentimental, but I say it in the fiercest voice I can raise - these are my sisters bonded in tears, and grief and sorrow, but experienced in joy and laughter and hope. What a heavenly gift!
Thursday, November 11, 2010
OR Express Lane
For Abbie, this morning brought a "Wham-Bam" of procedures in the operating room. At 6:30am she had tubes placed in her ears to drain fluid, allow her to hear better, and ensure she tolerates the hyperbaric chamber without pain. Since she was going to be under anesthesia for this, I thought it would be an opportune time to repeat the Botox injections in her arms we had done in April.
Her orthopedic surgeon was so gracious to sandwich her into his jammed schedule, so he saw Abbie at 6:45. He told me later that he had some Botox left over after injecting her biceps and supinators (forearm muscles), so he injected her stubborn little thumbs. That unexpected bonus made me smile.
I am so pleased we were able to get the Botox on board now, so that it will be in full effect by the time the seating specialist from San Diego gets here to assess her for the power chair next month.
After these two procedures, she was then handed off to an audiologist, who tested her auditory nerves while she was still under sedation. She feels that Abbie can hear well, despite having some neuropathy. The level of the neuropathy has not changed since her first test 6 years ago - so that was good news.
Ray and I met Abbie in recovery around 8:45am. I was excited that we would be getting home so early in the day, as I still had some preparation to do for my flight to Washington tonight. Just one glitch....Abbie needed to wake up before we could go.
We knew she was with us because she would furrow her brows when a new recovery arrival would awaken and begin crying. But, she would not crack those peepers open. Finally, she was moved out of recovery, because she no longer needed the monitors, and we went back to the "SurgiCenter" where our morning had started.
Zzzzzzzzzzzzzz
She just kept snoozing. By now, Ray had had to leave for a meeting, so Kyle had arrived to help me take Abbie home.
ZZZzzzzzzzzzz
Nothing was working - not uncovering her and letting the cool air hit her skin. Not changing her panties. Nothing.
Finally, I asked Kyle to just go to her bedside and start talking to her while gently shaking her chest. A glimmer of hope, as one eye cracked open! I prodded him to keep going, until she was awake enough for us to convince the nurse to take her IV out. She was definitely not completely with it, but we made a break for it while we could.
Once we got home, she did very well. As she really brightened up, we could easily see how much better she was hearing. Every little sound, and the softest whispers got responses from her. What a blessing! We will be looking forward to see how her schooling will go now, and are grateful that her ears won't be causing her any more pain.
Could I ask you to pray for her this weekend while I am away? I'm a little surprised at myself, that I am flying away the day she had procedures done - but, I trust her and I trust Ray. I know all will be well if they are covered by prayer.
Please pray also for the moms who will be converging on Suncadia tomorrow, and the families they will be leaving behind in North Carolina, Texas, Georgia, Utah, Arizona, California, Washington and here in Hawaii. I can't quite envision what it will be like to all be in the same room together, but it is going to be gooooood.
My prayers go out today to the families of our fallen veterans, and those caring for injured and recovering veterans, as well as all vets. May the Lord bless and keep you; Make His face to shine upon you; May He always be with you; and bring you peace. Your country is so grateful.
Her orthopedic surgeon was so gracious to sandwich her into his jammed schedule, so he saw Abbie at 6:45. He told me later that he had some Botox left over after injecting her biceps and supinators (forearm muscles), so he injected her stubborn little thumbs. That unexpected bonus made me smile.
I am so pleased we were able to get the Botox on board now, so that it will be in full effect by the time the seating specialist from San Diego gets here to assess her for the power chair next month.
After these two procedures, she was then handed off to an audiologist, who tested her auditory nerves while she was still under sedation. She feels that Abbie can hear well, despite having some neuropathy. The level of the neuropathy has not changed since her first test 6 years ago - so that was good news.
Ray and I met Abbie in recovery around 8:45am. I was excited that we would be getting home so early in the day, as I still had some preparation to do for my flight to Washington tonight. Just one glitch....Abbie needed to wake up before we could go.
We knew she was with us because she would furrow her brows when a new recovery arrival would awaken and begin crying. But, she would not crack those peepers open. Finally, she was moved out of recovery, because she no longer needed the monitors, and we went back to the "SurgiCenter" where our morning had started.
Zzzzzzzzzzzzzz
She just kept snoozing. By now, Ray had had to leave for a meeting, so Kyle had arrived to help me take Abbie home.
ZZZzzzzzzzzzz
Nothing was working - not uncovering her and letting the cool air hit her skin. Not changing her panties. Nothing.
Finally, I asked Kyle to just go to her bedside and start talking to her while gently shaking her chest. A glimmer of hope, as one eye cracked open! I prodded him to keep going, until she was awake enough for us to convince the nurse to take her IV out. She was definitely not completely with it, but we made a break for it while we could.
Once we got home, she did very well. As she really brightened up, we could easily see how much better she was hearing. Every little sound, and the softest whispers got responses from her. What a blessing! We will be looking forward to see how her schooling will go now, and are grateful that her ears won't be causing her any more pain.
Could I ask you to pray for her this weekend while I am away? I'm a little surprised at myself, that I am flying away the day she had procedures done - but, I trust her and I trust Ray. I know all will be well if they are covered by prayer.
Please pray also for the moms who will be converging on Suncadia tomorrow, and the families they will be leaving behind in North Carolina, Texas, Georgia, Utah, Arizona, California, Washington and here in Hawaii. I can't quite envision what it will be like to all be in the same room together, but it is going to be gooooood.
My prayers go out today to the families of our fallen veterans, and those caring for injured and recovering veterans, as well as all vets. May the Lord bless and keep you; Make His face to shine upon you; May He always be with you; and bring you peace. Your country is so grateful.
Monday, October 25, 2010
A Bigger Balloon
It's taken me a few days to catch my breath enough to write this update. I don't know what it says about me, or where we're at in this journey, that I question therapists expecting to have my balloon popped. I always have a twinge of fear that my expectations of Abbie may be oversized, and my observations of her abilities are skewed by love and hope.
Last Wednesday we were able to visit her Augmentative Communication speech therapist for the first time in a very long while. Lisa is the one who helps us with Abbie's switches -- she's the one who has given Abbie a voice.
I brought her up to speed on what Abbie is able to do now -- most importantly, "two-step scanning", using two switches to make choices. In my mind, this brought her very close to being ready for a dynamic communication device -- a computer whose display moves from one screen to the next when she makes choices. Not only did the balloon not go "pop", but it became hyper-inflated!
Lisa told me that another family we know, whose daughter uses a dynamic device, flew up to San Diego a while back to have a wheelchair seat custom-molded for their daughter. The chair is now ready, so instead of flying the whole family back to California, they are flying the wheelchair guy to Hawaii. He would like to train the staff while he is here, so is looking for a couple of other kids to work with.
Oooo-oooh --- pick me, pick me!!
It looks like we will be able to see him, but get this --- the chair he has put together for Shari is a power chair, and she will be able to use the same device to control her chair and her communication device! Oh. My. Goodness. This thought had never occurred to me. I had concerns about how she would be able to move from one joystick for driving to another for communicating, but my mind had never wandered to such an elegant solution.
So, the possibility is there, and her speech therapist thinks that from a control-device access point of view, Abbie is ready (for the communication device AND the chair)...but what would her other therapists say?
The next day we went to OT, and as Providence would have it, Eydie had planned to let Abbie practice in the power chair again.
We got her all set up, and she started backing up again. She hit the desk behind her, and then apparently decided that actually going somewhere might be more fun than just crashing into things. She started moving forward...toward the door. We all looked at each other, and said aloud "Should we open the door?"
Duh. Of course we opened the door.
We helped with the tight turns, and then.....there she went. Rolling down the hall, driving herself.
I saw other kids in the hallway stop what they were doing to watch Abbie roll by. My soul rejoiced as they saw HER, and as they processed that she was doing this herself, so she had to be smart.
When we made it back to the room, Eydie looked at me and said, "I am calling today to put a stop to the manual wheelchair order!" We have been waiting for this chair for 5 months now, and I have been getting a little more than aggravated at the delay. Ha ha ha -- always for a reason. A wonderful, beautiful reason.
There is much to consider as we pursue this new possibility. Would you pray for wisdom for us, and for the perfect, perfect chair and communication system for us. Each chair has to last 5 years, so we must do our best to look into the future and determine what will best meet Abbie's needs at age 14. (If she still needs a wheelchair by then.)
If we can make this power chair/communication device combo happen for her, it will truly change Abbie's life. I can't believe she's here. She works so hard every day, yet we know that it is God's grace that has lifted us to this broad place - and we rejoice with (off-key) singing!
Last Wednesday we were able to visit her Augmentative Communication speech therapist for the first time in a very long while. Lisa is the one who helps us with Abbie's switches -- she's the one who has given Abbie a voice.
I brought her up to speed on what Abbie is able to do now -- most importantly, "two-step scanning", using two switches to make choices. In my mind, this brought her very close to being ready for a dynamic communication device -- a computer whose display moves from one screen to the next when she makes choices. Not only did the balloon not go "pop", but it became hyper-inflated!
Lisa told me that another family we know, whose daughter uses a dynamic device, flew up to San Diego a while back to have a wheelchair seat custom-molded for their daughter. The chair is now ready, so instead of flying the whole family back to California, they are flying the wheelchair guy to Hawaii. He would like to train the staff while he is here, so is looking for a couple of other kids to work with.
Oooo-oooh --- pick me, pick me!!
It looks like we will be able to see him, but get this --- the chair he has put together for Shari is a power chair, and she will be able to use the same device to control her chair and her communication device! Oh. My. Goodness. This thought had never occurred to me. I had concerns about how she would be able to move from one joystick for driving to another for communicating, but my mind had never wandered to such an elegant solution.
So, the possibility is there, and her speech therapist thinks that from a control-device access point of view, Abbie is ready (for the communication device AND the chair)...but what would her other therapists say?
The next day we went to OT, and as Providence would have it, Eydie had planned to let Abbie practice in the power chair again.
We got her all set up, and she started backing up again. She hit the desk behind her, and then apparently decided that actually going somewhere might be more fun than just crashing into things. She started moving forward...toward the door. We all looked at each other, and said aloud "Should we open the door?"
Duh. Of course we opened the door.
We helped with the tight turns, and then.....there she went. Rolling down the hall, driving herself.
I saw other kids in the hallway stop what they were doing to watch Abbie roll by. My soul rejoiced as they saw HER, and as they processed that she was doing this herself, so she had to be smart.
When we made it back to the room, Eydie looked at me and said, "I am calling today to put a stop to the manual wheelchair order!" We have been waiting for this chair for 5 months now, and I have been getting a little more than aggravated at the delay. Ha ha ha -- always for a reason. A wonderful, beautiful reason.
There is much to consider as we pursue this new possibility. Would you pray for wisdom for us, and for the perfect, perfect chair and communication system for us. Each chair has to last 5 years, so we must do our best to look into the future and determine what will best meet Abbie's needs at age 14. (If she still needs a wheelchair by then.)
If we can make this power chair/communication device combo happen for her, it will truly change Abbie's life. I can't believe she's here. She works so hard every day, yet we know that it is God's grace that has lifted us to this broad place - and we rejoice with (off-key) singing!
Wednesday, October 13, 2010
New Information, New Accomplishments
As usual, when I've let time slip by between updates, I need to start in the present and then see what I can drag out of my shadowy memory. So, let's start with today...
We had an appointment with an audiologist, because at a check-up with Abbie's ENT last week, lots of fluid was found in her ears. Dr. T. wanted to do the audiological testing before determining whether to place PE tubes in Abbie's ears.
When the audiologist called yesterday to confirm the appointment and talk specifics about the testing, she mentioned "Remember when we last did the ABR testing (2004 or 05), it was determined that Abbie has Auditory Neuropathic Spectrum Disorder (ANSD)?'
Ummmm....no, I didn't recall anything being wrong with her auditory nerve, and for years have found comfort in at least one of her senses being intact. Ugh. This unexpected news pushed me further into a pit I'd been slowly sinking into. The rest of the day was spent researching this relatively new diagnosis, which was formalized in 2008, I believe, at a meeting in Como, Italy. Thoughts of that beautiful place were momentarily distracting, but my heart was still pierced.
My research didn't show much, as like many "spectrum disorders", information is broad and not particularly useful. This morning, however the audiologist said she needed to perform certain tests to ensure the ANSP was not progressing.
What?? This whatever-it-is can be progressive leading to profound deafness???
First came the tympanogram which showed that her right ear is completely full of fluid, while her left is is also affected, but not as completely.
She then tested the left ear, and was able to get the results we were hoping for, despite the fluid. Abbie can hear -- as we assumed she could. But, all this fluid does explain why sometimes it seems as if she is distracted during school, working on the computer, or interacting with other people. We all sound like Charlie Brown's teacher to her!
I scheduled the PE tube surgery, along with audiological testing that is done under sedation, for the early morning of November 11. I fly out that night for a special retreat in Washington State -- only for moms of near-drowning survivors who are coming from across the country. (Woo-hoo!!!) I am confident that all will go smoothly, and that, in fact, Abbie will feel a lot better once it is over and all that pressure is relieved.
That whole ear situation leads me to an example of Abbie's improving communication skills. The day after we visited her ENT, she slept a lot in the morning. Around 3:30pm Genevieve came into the kitchen and said, "I need you right now." This is rare, and I was immediately concerned.
Abbie was laying on the massage table bawling her eyes out. She never does this unless she is injured -- as in broken femurs or torn ligaments. I knew that she had not done anything that day that would have exposed her to the risk of injury, so I was stumped.
I said to Genevieve, "Tell me exactly what happened."
As Abbie continued to wail, Genevieve told me that she had carried Abbie from her bed to the massage table with no complaints. Then, she picked her up and took one step toward the hyperbaric chamber, at which point the crying commenced.
Aha! Given what Dr. T. had seen in her ears the day prior, I had an idea what was causing the fit.
"Abbie, does diving hurt your ears?"
More crying, but blinking yes in response as well. Then, more crying.
"OK, OK...we are not going to dive. You are not going to dive today. I will rock you instead. Let's go to the rocking chair instead." I had to keep reassuring her until she could hear me through her distress. Once she understood, the crying ceased immediately.
I smiled as I rocked her. Kissing her tear-stained cheeks I said, "Abbie you knew what was going to happen -- you knew you were about to go diving, and you knew it would hurt and you found a way to tell us 'NO!' That is called communication. I am so proud of you!"
Out came her dimple. I enjoyed that while also relishing the realization that she was able to anticipate and communicate. No more diving for now. Lots more rocking.
The second big thing is how she is doing with her communication switch. As I mentioned before, she is now using a joystick with her right hand. Because she likes to roll her hand and arm to the outside, we have been using flexible straps to help her keep her hand on the switch. Her school OT wanted to write an IEP goal that Abbie would hold her hand and arm in a neutral position for five minutes. I replied that we needed to start measuring in seconds, not minutes.
Silly Mom (That is my new name, for as often as I earn the moniker)
When the school therapists were here, I placed the joystick in her hand, and went to look for the straps. When I came back with them, she was holding on and using the switch just fine by herself. So, I set the straps down and watched.
Fifteen minutes. All by herself.
And then - she got tired and let her arm roll to the outside, which pulled her hand off the switch. We were all so excited about how long she had held that position, and were talking about what to do next that we didn't see her roll her arm back over and place her hand back on the joystick. All by herself. I cannot tell you how momentous that little movement was.
She continues to enjoy working on the computer, especially with a program called "Choose and Tell", in which she gets to choose the hero of the story, the mode of transportation, the destination, and then the paths to follow and doors to open. She is exceptionally picky about the doors she chooses, because one hides a treasure and one hides a monster. She remembers which one is which after she's built a certain story once or twice, so always wants to make sure she finds the treasure.
I watch her, and realize that I have already found mine.
We had an appointment with an audiologist, because at a check-up with Abbie's ENT last week, lots of fluid was found in her ears. Dr. T. wanted to do the audiological testing before determining whether to place PE tubes in Abbie's ears.
When the audiologist called yesterday to confirm the appointment and talk specifics about the testing, she mentioned "Remember when we last did the ABR testing (2004 or 05), it was determined that Abbie has Auditory Neuropathic Spectrum Disorder (ANSD)?'
Ummmm....no, I didn't recall anything being wrong with her auditory nerve, and for years have found comfort in at least one of her senses being intact. Ugh. This unexpected news pushed me further into a pit I'd been slowly sinking into. The rest of the day was spent researching this relatively new diagnosis, which was formalized in 2008, I believe, at a meeting in Como, Italy. Thoughts of that beautiful place were momentarily distracting, but my heart was still pierced.
My research didn't show much, as like many "spectrum disorders", information is broad and not particularly useful. This morning, however the audiologist said she needed to perform certain tests to ensure the ANSP was not progressing.
What?? This whatever-it-is can be progressive leading to profound deafness???
First came the tympanogram which showed that her right ear is completely full of fluid, while her left is is also affected, but not as completely.
She then tested the left ear, and was able to get the results we were hoping for, despite the fluid. Abbie can hear -- as we assumed she could. But, all this fluid does explain why sometimes it seems as if she is distracted during school, working on the computer, or interacting with other people. We all sound like Charlie Brown's teacher to her!
I scheduled the PE tube surgery, along with audiological testing that is done under sedation, for the early morning of November 11. I fly out that night for a special retreat in Washington State -- only for moms of near-drowning survivors who are coming from across the country. (Woo-hoo!!!) I am confident that all will go smoothly, and that, in fact, Abbie will feel a lot better once it is over and all that pressure is relieved.
That whole ear situation leads me to an example of Abbie's improving communication skills. The day after we visited her ENT, she slept a lot in the morning. Around 3:30pm Genevieve came into the kitchen and said, "I need you right now." This is rare, and I was immediately concerned.
Abbie was laying on the massage table bawling her eyes out. She never does this unless she is injured -- as in broken femurs or torn ligaments. I knew that she had not done anything that day that would have exposed her to the risk of injury, so I was stumped.
I said to Genevieve, "Tell me exactly what happened."
As Abbie continued to wail, Genevieve told me that she had carried Abbie from her bed to the massage table with no complaints. Then, she picked her up and took one step toward the hyperbaric chamber, at which point the crying commenced.
Aha! Given what Dr. T. had seen in her ears the day prior, I had an idea what was causing the fit.
"Abbie, does diving hurt your ears?"
More crying, but blinking yes in response as well. Then, more crying.
"OK, OK...we are not going to dive. You are not going to dive today. I will rock you instead. Let's go to the rocking chair instead." I had to keep reassuring her until she could hear me through her distress. Once she understood, the crying ceased immediately.
I smiled as I rocked her. Kissing her tear-stained cheeks I said, "Abbie you knew what was going to happen -- you knew you were about to go diving, and you knew it would hurt and you found a way to tell us 'NO!' That is called communication. I am so proud of you!"
Out came her dimple. I enjoyed that while also relishing the realization that she was able to anticipate and communicate. No more diving for now. Lots more rocking.
The second big thing is how she is doing with her communication switch. As I mentioned before, she is now using a joystick with her right hand. Because she likes to roll her hand and arm to the outside, we have been using flexible straps to help her keep her hand on the switch. Her school OT wanted to write an IEP goal that Abbie would hold her hand and arm in a neutral position for five minutes. I replied that we needed to start measuring in seconds, not minutes.
Silly Mom (That is my new name, for as often as I earn the moniker)
When the school therapists were here, I placed the joystick in her hand, and went to look for the straps. When I came back with them, she was holding on and using the switch just fine by herself. So, I set the straps down and watched.
Fifteen minutes. All by herself.
And then - she got tired and let her arm roll to the outside, which pulled her hand off the switch. We were all so excited about how long she had held that position, and were talking about what to do next that we didn't see her roll her arm back over and place her hand back on the joystick. All by herself. I cannot tell you how momentous that little movement was.
She continues to enjoy working on the computer, especially with a program called "Choose and Tell", in which she gets to choose the hero of the story, the mode of transportation, the destination, and then the paths to follow and doors to open. She is exceptionally picky about the doors she chooses, because one hides a treasure and one hides a monster. She remembers which one is which after she's built a certain story once or twice, so always wants to make sure she finds the treasure.
I watch her, and realize that I have already found mine.
Monday, September 27, 2010
Open Doors and Independence
(note: I did not begin this update with thoughts of writing a tome, but just went where the Spirit led. I pray you will be blessed.)
"When it rains, it pours" is such a cliche, but only because it's the truth. Things can never seem to happen in manageable isolation, but insist on arriving in chaotic twins or utterly crazy triplets. Usually, it is a cause for aggravation or even despair.
Not at our house. At least, not lately!
Perhaps Abbie's prayers for Dobi (see last update) added rivulets to her own growing stream of recovery. Maybe the paths of her faith and God's will are at an important intersection. It could just be the turning of a small facet of the divine plan that we will never comprehend. Whatever the underpinnings, all that matters is that "it" is GOOD!
A couple of weeks ago we met with her orthopedic surgeon and therapy team. Together we assessed her current state - below the waist she is awesome and we are all pleased with her knee-bending, foot position, and hip flexion. Her arms and hands did not get the same gold star. Dr. B said that he thought the hand surgery he performed in April would be a "permanent solution" to her wanting to hold her thumb on her palm and keep her hand fisted. Her hands are so much better than they were, but her thumbs really (really, really) want to go back to their cozy palm-caves and we are continually fighting against that with splinting, massage and exercises. Her arms also want to roll back out again, making it tough to stay in a neutral arm position, and almost impossible to get to full pronation (palm down). Not great for communication. We talked about future arm fusions and other not great things. We looked at her spine and talked about monitoring the developing curve, which may become much more pronounced through adolescence. We discussed how many adolescents require rods in their backs to prevent curvatures that compromise their abilities to breathe or be seated in wheelchairs.
Finally, at one point I looked at Dr. B. and said, "What you are telling me in not so many words is that this is all going to get a lot more difficult."
"Yes - as she grows those tight muscles are going to get bigger and stronger. Everything is more difficult then."
I was grateful for his challenging, yet empathetic honesty. I could deal with it because in the back of my mind I was thinking, "We're just not going to let it get to that point."
I've thought that before, and been wrong -- about things as simple as a G-tube and as complex as her hip surgery.
This time is different, however, because we have a new tool in our box that seems to be making a huge difference already. First, let me tell you what we've seen, and then I 'll tell you what it is.
One result of Abbie's brain injury is that she is slack-jawed and her mouth hangs open nearly all the time. Over the years this has changed the architecture of her mouth and jaw. In August I had a dentist I really respect examine Abbie. Since we have no images of her mouth, he said that just by manual examination he could not tell if her TMJ joint was fused, or had even formed properly. He was not sure how much range of motion we were ever going to be able to get with her lower jaw, but was not overly discouraging because the truth was there was no clear way to tell.
The next day Abbie received her first treatment with this new tool. Within twenty minutes her jaw was swinging like a gate on shiny new hinges. I was stunned. The only barrier to full mouth closure was her first molars.
During this session, her nurse Alicia and I both watched in amazement as Abbie's face changed right before our eyes. Constricted for all these years, her palate is very narrowed, and thus her mid-face is as well. We saw it broaden, with her cheekbones becoming more prominent and her eye sockets becoming distinguished from her face. It was stunning.
Having seen the visual evidence of the power of this new tool, I ordered one and (im)patiently waited.
Hmmmm....I just realized that to really tell the rest of this story I need to tell you what the tool is now.
The "BioTransducer" is an attachment to the Tennant Biomodulator, a device we have used for years. While the Biomodulator works through the electrical wiring systems of the body (the sheath around every nerve, and the fascia), the BioTransducer works with the magnetic fields created within the body whenever electrons move.
This difference has opened up incredible new doorways for us. I believe the Biomodulator is a critical reason why Abbie has recovered her cognition. But, we've never had a way to treat her brain directly. Until now.
As I passed the BioTransducer over her head I would feel magnetic tugs at areas that needed treatment. I just treated where it "stuck". I think I spent an hour or so doing that, and then Abbie fell deeply asleep for the night. Over the next three days I noticed two things about Abbie as I continued to treat her brain and other parts of her body.
She was sleeping a TON. One morning she slept from 9:30 until 1:30. A couple of days later she slept from 9:30 until 12:30. She was breathing wonderfully, had a normal temperature, and her coloring was beautiful. So, I just let her rest and assumed she was doing some heavy duty "inside" work.
When she was awake she seemed to be unloading a lot of emotional trauma. At random times she would become very upset: crying, screaming out, shaking. One night I slept on the recliner right by her bed so that I could be there immediately to comfort her. Again, this seemed to be part of a process she was working through, so we just stayed calm and tried to reassure her that she was safe and we were right there.
This went on for three days.
At the beginning of this sleep/scared stage we went to PT. Abbie has outgrown the foot splints that we use when she stands, so she has not been standing in a while. Dr. B. asked why we weren't letting her stand barefooted. Uhhhhh - no good reason, so up she went on Monday.
Because she hadn't stood in so long, her lower legs began to get a little blue after 5 minutes, as her circulatory system isn't used to pumping uphill. I was using the BioTransducer on her left leg because the IT band is a bit constricted, which gives her valgus in the left knee (her knee bends inward). As I treated that area, her lower left leg turned pink again. Her PT pointed this out to me, so we thought we'd experiment on the other leg. After a bit of BioTransducer treatment it pinked up again, too. So, I kept treating, and Abbie kept standing. She was able to do twenty minutes since we were able to keep her legs pink.
By Wednesday evening it seemed that most of the emotional issues had been worked through, for now. Thursday brought two therapy appointments back-to-back. Of course, I packed our new toy along.
First we went to Vital Stim, the therapy to strengthen Abbie's swallow. She had cried throughout the previous week's session, as she detests the electrodes stuck to her throat. This week I focused on treating her TMJ joint as the therapist worked on her swallowing. I only had a sideways view of the action, but did catch a glimpse of what caused the therapist to exclaim, "Oh my God!!"
Abbie had raised her lower jaw up to meet her upper jaw during a swallow. That sounds so pedestrian, but we have been working on, and praying for that for six years. And, then she did it again. And again. Coordinating her jaw movements with her swallow is like learning a new dance for her, so she soon fatigued and it got harder for her. But, we all saw it and rejoiced. Not only is her jaw unlocked, but she is learning how to USE it again.
We floated out to the hallway on a wave of celebration, and drifted into the OT treatment room.
I explained to Abbie's OT that given Dr. B's assessement of Abbie's hands we had changed the kind of switch she uses to communicate since the old one encouraged the type of movement we were trying to avoid. The BioTransducer treatments had reduced Abbie's muscle tone enough that she was able to easily keep her right hand and arm in a neutral position and use a joystick switch. She had showed this to the school therapist the previous Friday, and was now happy to show Auntie Eydie.
She did so well with the switch that Eydie said, "Let's get her into the power chair, since the controller is also a joystick." Abbie was all for that idea!
We padded the controller a bit to make it big enough for her to get a good grip on it, and then....
There she went, all by herself. Eydie, Alicia and I just stood back, and for the first time in over six years I watched Abbie go somewhere all by herself. There are not words to describe the sensation of that sight, or the emotions I felt.
Of course, she did it in true Abbie-style. Backwards - because that is more fun. When we would warn her that she was about to bump into something, she would just speed up until she crashed into the desk, or wall, or garbage can. Still a rascal!!
Of course, we continue daily BioTransducer treatments, and at times it feels like a dream. Every parent in our situation prays, hopes, begs and wishes for something that will truly help, something that really will change things. I can't believe that it's now in our hands.
I do not know where Abbie's road will go from here, and when the curves and hills will come. All I know is that we are truly abundantly blessed.
Tonight she and I read Psalms 56 and 116, which seemed penned just for her. I know, I know, I know that she truly will "praise" and "tell" and "proclaim" before the Lord's people one day. And, she may just ascend the stage backwards....just for fun!
*** One other little note, amidst all this praise. Please pray for our niece Crystal, who lived with us when Abbie was hurt and helped us so much in caring for Abbie afterwards. She and her husband, Dustin, are at the hospital right now as she labors with their first child. We hope and pray that little Katelyn will arrive safely - after midnight - so that she can celebrate her Birth Day along with Kyle, who will be 18 tomorrow. ***
"When it rains, it pours" is such a cliche, but only because it's the truth. Things can never seem to happen in manageable isolation, but insist on arriving in chaotic twins or utterly crazy triplets. Usually, it is a cause for aggravation or even despair.
Not at our house. At least, not lately!
Perhaps Abbie's prayers for Dobi (see last update) added rivulets to her own growing stream of recovery. Maybe the paths of her faith and God's will are at an important intersection. It could just be the turning of a small facet of the divine plan that we will never comprehend. Whatever the underpinnings, all that matters is that "it" is GOOD!
A couple of weeks ago we met with her orthopedic surgeon and therapy team. Together we assessed her current state - below the waist she is awesome and we are all pleased with her knee-bending, foot position, and hip flexion. Her arms and hands did not get the same gold star. Dr. B said that he thought the hand surgery he performed in April would be a "permanent solution" to her wanting to hold her thumb on her palm and keep her hand fisted. Her hands are so much better than they were, but her thumbs really (really, really) want to go back to their cozy palm-caves and we are continually fighting against that with splinting, massage and exercises. Her arms also want to roll back out again, making it tough to stay in a neutral arm position, and almost impossible to get to full pronation (palm down). Not great for communication. We talked about future arm fusions and other not great things. We looked at her spine and talked about monitoring the developing curve, which may become much more pronounced through adolescence. We discussed how many adolescents require rods in their backs to prevent curvatures that compromise their abilities to breathe or be seated in wheelchairs.
Finally, at one point I looked at Dr. B. and said, "What you are telling me in not so many words is that this is all going to get a lot more difficult."
"Yes - as she grows those tight muscles are going to get bigger and stronger. Everything is more difficult then."
I was grateful for his challenging, yet empathetic honesty. I could deal with it because in the back of my mind I was thinking, "We're just not going to let it get to that point."
I've thought that before, and been wrong -- about things as simple as a G-tube and as complex as her hip surgery.
This time is different, however, because we have a new tool in our box that seems to be making a huge difference already. First, let me tell you what we've seen, and then I 'll tell you what it is.
One result of Abbie's brain injury is that she is slack-jawed and her mouth hangs open nearly all the time. Over the years this has changed the architecture of her mouth and jaw. In August I had a dentist I really respect examine Abbie. Since we have no images of her mouth, he said that just by manual examination he could not tell if her TMJ joint was fused, or had even formed properly. He was not sure how much range of motion we were ever going to be able to get with her lower jaw, but was not overly discouraging because the truth was there was no clear way to tell.
The next day Abbie received her first treatment with this new tool. Within twenty minutes her jaw was swinging like a gate on shiny new hinges. I was stunned. The only barrier to full mouth closure was her first molars.
During this session, her nurse Alicia and I both watched in amazement as Abbie's face changed right before our eyes. Constricted for all these years, her palate is very narrowed, and thus her mid-face is as well. We saw it broaden, with her cheekbones becoming more prominent and her eye sockets becoming distinguished from her face. It was stunning.
Having seen the visual evidence of the power of this new tool, I ordered one and (im)patiently waited.
Hmmmm....I just realized that to really tell the rest of this story I need to tell you what the tool is now.
The "BioTransducer" is an attachment to the Tennant Biomodulator, a device we have used for years. While the Biomodulator works through the electrical wiring systems of the body (the sheath around every nerve, and the fascia), the BioTransducer works with the magnetic fields created within the body whenever electrons move.
This difference has opened up incredible new doorways for us. I believe the Biomodulator is a critical reason why Abbie has recovered her cognition. But, we've never had a way to treat her brain directly. Until now.
As I passed the BioTransducer over her head I would feel magnetic tugs at areas that needed treatment. I just treated where it "stuck". I think I spent an hour or so doing that, and then Abbie fell deeply asleep for the night. Over the next three days I noticed two things about Abbie as I continued to treat her brain and other parts of her body.
She was sleeping a TON. One morning she slept from 9:30 until 1:30. A couple of days later she slept from 9:30 until 12:30. She was breathing wonderfully, had a normal temperature, and her coloring was beautiful. So, I just let her rest and assumed she was doing some heavy duty "inside" work.
When she was awake she seemed to be unloading a lot of emotional trauma. At random times she would become very upset: crying, screaming out, shaking. One night I slept on the recliner right by her bed so that I could be there immediately to comfort her. Again, this seemed to be part of a process she was working through, so we just stayed calm and tried to reassure her that she was safe and we were right there.
This went on for three days.
At the beginning of this sleep/scared stage we went to PT. Abbie has outgrown the foot splints that we use when she stands, so she has not been standing in a while. Dr. B. asked why we weren't letting her stand barefooted. Uhhhhh - no good reason, so up she went on Monday.
Because she hadn't stood in so long, her lower legs began to get a little blue after 5 minutes, as her circulatory system isn't used to pumping uphill. I was using the BioTransducer on her left leg because the IT band is a bit constricted, which gives her valgus in the left knee (her knee bends inward). As I treated that area, her lower left leg turned pink again. Her PT pointed this out to me, so we thought we'd experiment on the other leg. After a bit of BioTransducer treatment it pinked up again, too. So, I kept treating, and Abbie kept standing. She was able to do twenty minutes since we were able to keep her legs pink.
By Wednesday evening it seemed that most of the emotional issues had been worked through, for now. Thursday brought two therapy appointments back-to-back. Of course, I packed our new toy along.
First we went to Vital Stim, the therapy to strengthen Abbie's swallow. She had cried throughout the previous week's session, as she detests the electrodes stuck to her throat. This week I focused on treating her TMJ joint as the therapist worked on her swallowing. I only had a sideways view of the action, but did catch a glimpse of what caused the therapist to exclaim, "Oh my God!!"
Abbie had raised her lower jaw up to meet her upper jaw during a swallow. That sounds so pedestrian, but we have been working on, and praying for that for six years. And, then she did it again. And again. Coordinating her jaw movements with her swallow is like learning a new dance for her, so she soon fatigued and it got harder for her. But, we all saw it and rejoiced. Not only is her jaw unlocked, but she is learning how to USE it again.
We floated out to the hallway on a wave of celebration, and drifted into the OT treatment room.
I explained to Abbie's OT that given Dr. B's assessement of Abbie's hands we had changed the kind of switch she uses to communicate since the old one encouraged the type of movement we were trying to avoid. The BioTransducer treatments had reduced Abbie's muscle tone enough that she was able to easily keep her right hand and arm in a neutral position and use a joystick switch. She had showed this to the school therapist the previous Friday, and was now happy to show Auntie Eydie.
She did so well with the switch that Eydie said, "Let's get her into the power chair, since the controller is also a joystick." Abbie was all for that idea!
We padded the controller a bit to make it big enough for her to get a good grip on it, and then....
There she went, all by herself. Eydie, Alicia and I just stood back, and for the first time in over six years I watched Abbie go somewhere all by herself. There are not words to describe the sensation of that sight, or the emotions I felt.
Of course, she did it in true Abbie-style. Backwards - because that is more fun. When we would warn her that she was about to bump into something, she would just speed up until she crashed into the desk, or wall, or garbage can. Still a rascal!!
Of course, we continue daily BioTransducer treatments, and at times it feels like a dream. Every parent in our situation prays, hopes, begs and wishes for something that will truly help, something that really will change things. I can't believe that it's now in our hands.
I do not know where Abbie's road will go from here, and when the curves and hills will come. All I know is that we are truly abundantly blessed.
Tonight she and I read Psalms 56 and 116, which seemed penned just for her. I know, I know, I know that she truly will "praise" and "tell" and "proclaim" before the Lord's people one day. And, she may just ascend the stage backwards....just for fun!
*** One other little note, amidst all this praise. Please pray for our niece Crystal, who lived with us when Abbie was hurt and helped us so much in caring for Abbie afterwards. She and her husband, Dustin, are at the hospital right now as she labors with their first child. We hope and pray that little Katelyn will arrive safely - after midnight - so that she can celebrate her Birth Day along with Kyle, who will be 18 tomorrow. ***
Wednesday, September 15, 2010
Powerful Princess
Abbie has been busy getting used to new therapists from school, who come to work with her at home. She has also kept up all her physical work. It is difficult, after a lapse in updates, to catch up. So, the best (I admit...I mean "easiest") thing to do is to just jump right in at where we are.
Last Sunday began a saga that made me realize how blessed we are. Just before Genevieve left, she asked, "What is that fever you get from mosquitoes?" Malaria was the first thing that came to my mind, and was my answer. In the middle of the night the word "Dengue" came to me. Yes, indeed, it was Dengue fever that her two little great-nieces were afflicted with in the Phillippines.
Monday brought dire news, that the older sister (6yo) was failing, and becoming unresponsive. It was especially stressful for Genevieve and her family because in the Phillippines, medical treatment is not undertaken unless it is paid for right then. They were having to come up with money, during the crisis, to get the care these precious girls needed.
The family was being heavily pressured to disconnect life support, as Dobi's organs failed and she no longer responded to anyone. Treatment was begun too far into the course of the illness to help her. The family's only recourse was to beg for the hospital to leave it on long enough for the mother to get there to hold her daughter as she passed away. Sickening memories for us, of that situation, but all I had to worry about then was Abbie - -not how we were going to pay the ICU costs that day.
As the news kept getting worse I turned to Abbie and said firmly, "You need to start praying for Dobi...right now. Pray for Jesus to heal her. You keep praying." Abbie's little body jumped in her bed and her eyes flashed her affirmation. I turned to Genevieve and said, "Abbie is on the job!"
A couple hours later, Genevieve's phone rang. Dobi had urinated a tiny bit. We laughed with joy - -it wasn't over yet! But, the family still had to fight to be allowed to support her. The disconnection was scheduled for Tuesday.
Mid-afternoon on Tuesday, while I was in the kitchen I heard Genevieve cry, "Oh my God!" I hesitated just a moment before I ran in there, intimidated by the grief about to confront me. When I saw her face, however, I became dizzy. Not tears. Joy....joy, joy , joy.
Dobi was awake! And talking. And asking for a Dora cake for her birthday. I danced over to Abbie and said, "Look how powerful your prayers are. LOOK what you CAN do!!" She grinned. I reminded her that the job wasn't quite done, and that we needed to pray Dobi all the way home, but we did relish the celebration.
We are humbled yet again. How loving and compassionate is our God. How he houses his most powerful warriors in fragile clay. How profoundly he uses those the world sees as unuseful.
Abbie was most certainly not the only one praying for Dobi. But, He allowed Abbie the privilege of being part of someone else's miracle, to feel capable and strong, and, I suspect, to feel particularly equipped and called for just such a mission.
We are so grateful!
Last Sunday began a saga that made me realize how blessed we are. Just before Genevieve left, she asked, "What is that fever you get from mosquitoes?" Malaria was the first thing that came to my mind, and was my answer. In the middle of the night the word "Dengue" came to me. Yes, indeed, it was Dengue fever that her two little great-nieces were afflicted with in the Phillippines.
Monday brought dire news, that the older sister (6yo) was failing, and becoming unresponsive. It was especially stressful for Genevieve and her family because in the Phillippines, medical treatment is not undertaken unless it is paid for right then. They were having to come up with money, during the crisis, to get the care these precious girls needed.
The family was being heavily pressured to disconnect life support, as Dobi's organs failed and she no longer responded to anyone. Treatment was begun too far into the course of the illness to help her. The family's only recourse was to beg for the hospital to leave it on long enough for the mother to get there to hold her daughter as she passed away. Sickening memories for us, of that situation, but all I had to worry about then was Abbie - -not how we were going to pay the ICU costs that day.
As the news kept getting worse I turned to Abbie and said firmly, "You need to start praying for Dobi...right now. Pray for Jesus to heal her. You keep praying." Abbie's little body jumped in her bed and her eyes flashed her affirmation. I turned to Genevieve and said, "Abbie is on the job!"
A couple hours later, Genevieve's phone rang. Dobi had urinated a tiny bit. We laughed with joy - -it wasn't over yet! But, the family still had to fight to be allowed to support her. The disconnection was scheduled for Tuesday.
Mid-afternoon on Tuesday, while I was in the kitchen I heard Genevieve cry, "Oh my God!" I hesitated just a moment before I ran in there, intimidated by the grief about to confront me. When I saw her face, however, I became dizzy. Not tears. Joy....joy, joy , joy.
Dobi was awake! And talking. And asking for a Dora cake for her birthday. I danced over to Abbie and said, "Look how powerful your prayers are. LOOK what you CAN do!!" She grinned. I reminded her that the job wasn't quite done, and that we needed to pray Dobi all the way home, but we did relish the celebration.
We are humbled yet again. How loving and compassionate is our God. How he houses his most powerful warriors in fragile clay. How profoundly he uses those the world sees as unuseful.
Abbie was most certainly not the only one praying for Dobi. But, He allowed Abbie the privilege of being part of someone else's miracle, to feel capable and strong, and, I suspect, to feel particularly equipped and called for just such a mission.
We are so grateful!
Monday, August 23, 2010
A Blessed Birthday
As every mom does, I am sure, I watched the minutes this evening counting down until the moment Abigail Faith entered our lives. I recalled wanting to toss my natural birthing plan out the window, and thinking the nurse was on board. Only later did I find out that my dear, supportive husband was standing behind me shaking his head no. Poor woman -- a desperate patient one one hand, and her very firm boss on the other.
I seriously thought the IV team, and my epidural were on the way during the 15 minutes it took to go from 6 to 10cm dilation. Nope. I also assumed the doctor would be in the room when the baby arrived. Wrong again. Nothing went as expected that day, including welcoming an Abigail instead of a Jack Logan. The depth of that surprise will never wear off, thankfully.
As 6:26 pm neared I was busy in the kitchen, preparing dinner for the boys. It had been a beautiful day, capped by the full rainbow smiling at Chase and I as we left the gym in the afternoon. I think I heard the rain before I saw it, because the sky really hadn't changed. The pinks of approaching sunset, puffy clouds in the distance and the golden haze in my yard contrasted completely with the deluge that made my jaw drop. The shock of the dissonance made me stop in my tracks, and brought the thought, "The blessings of God are heavy upon us." It only lasted five minutes -- just long enough for me to get the Lord's birthday message for Abbie.
As I finished dinner, and reflected on the year gone by, it struck me that on Abbie's eighth birthday, we had no idea how smart she is. We were a month away from beginning to do math with her, and had just figured out that she could spell. I wonder what she is going to surprise us with this year -- I can hardly wait! I pray that this would be the year that her body would be unbound.
This has already been a fairly lengthy update, but I want to share with you the message we got at church yesterday. It was so exquisitely-timed that I laughed aloud when the subject, and the punchline, were revealed. I think it was God's birthday letter to Abbie (and her family.)
We had a visiting pastor yesterday, who said he would be speaking on faith, using the text in Genesis that describes when Abraham was called to sacrifice his much-prayed for son. His decades of praying for Isaac made my years of pleading for Abbie pale in comparison.
The crux of the message was that there were two sides to that mountain that Abraham and his unaware son were climbing, and they could only see their side. They could not see God coming up the other side to meet them with the ram, to be sacrificed in Isaac's place. Abraham did not delay his obedience in order to wait for God's alternate provision. And, if he had faltered, if he had stopped halfway up, or even just a few steps short, he never would have known God's provision for him. How different would his life and faith have been?
The pastor defined faith as the intersection of our obedience and God's provision. The challenge, he explained, is that we often want to see the provision before we obey. But, "Do not quit. Do not quit. Don't give up. Do not quit!!!" he exhorted us.
Oh no -- we will not quit. We will not stop. We are just trying to keep up with an amazing girl who is charging up that mountain, confident in the provision that we only glimpse dimly. May the Lord bless her deeply this year!
I seriously thought the IV team, and my epidural were on the way during the 15 minutes it took to go from 6 to 10cm dilation. Nope. I also assumed the doctor would be in the room when the baby arrived. Wrong again. Nothing went as expected that day, including welcoming an Abigail instead of a Jack Logan. The depth of that surprise will never wear off, thankfully.
As 6:26 pm neared I was busy in the kitchen, preparing dinner for the boys. It had been a beautiful day, capped by the full rainbow smiling at Chase and I as we left the gym in the afternoon. I think I heard the rain before I saw it, because the sky really hadn't changed. The pinks of approaching sunset, puffy clouds in the distance and the golden haze in my yard contrasted completely with the deluge that made my jaw drop. The shock of the dissonance made me stop in my tracks, and brought the thought, "The blessings of God are heavy upon us." It only lasted five minutes -- just long enough for me to get the Lord's birthday message for Abbie.
As I finished dinner, and reflected on the year gone by, it struck me that on Abbie's eighth birthday, we had no idea how smart she is. We were a month away from beginning to do math with her, and had just figured out that she could spell. I wonder what she is going to surprise us with this year -- I can hardly wait! I pray that this would be the year that her body would be unbound.
This has already been a fairly lengthy update, but I want to share with you the message we got at church yesterday. It was so exquisitely-timed that I laughed aloud when the subject, and the punchline, were revealed. I think it was God's birthday letter to Abbie (and her family.)
We had a visiting pastor yesterday, who said he would be speaking on faith, using the text in Genesis that describes when Abraham was called to sacrifice his much-prayed for son. His decades of praying for Isaac made my years of pleading for Abbie pale in comparison.
The crux of the message was that there were two sides to that mountain that Abraham and his unaware son were climbing, and they could only see their side. They could not see God coming up the other side to meet them with the ram, to be sacrificed in Isaac's place. Abraham did not delay his obedience in order to wait for God's alternate provision. And, if he had faltered, if he had stopped halfway up, or even just a few steps short, he never would have known God's provision for him. How different would his life and faith have been?
The pastor defined faith as the intersection of our obedience and God's provision. The challenge, he explained, is that we often want to see the provision before we obey. But, "Do not quit. Do not quit. Don't give up. Do not quit!!!" he exhorted us.
Oh no -- we will not quit. We will not stop. We are just trying to keep up with an amazing girl who is charging up that mountain, confident in the provision that we only glimpse dimly. May the Lord bless her deeply this year!
Wednesday, August 11, 2010
Hard Work Rewarded
We are just getting our feet back on the ground after a wonderful 2-week vacation in Washington State. Abbie thrived on long walks through the woods, listening for birds and looking for deer. She also spent quite a bit of time on a massage table positioned next to an enormous window overlooking a grove of pine trees. If a body can say "ahhhhhhh", that's what she looked like much of the vacation. I think she relished not having any appointments or therapies as much as we did.
The day after we got home I had a meeting at the elementary school to revalidate Abbie's eligibility for special education and to discuss the reports written by school staff who had done observations in June and July. Usually with Abbie, the eligibility meeting is simply a check-the-block exercise because it is obvious to everyone that she meets the criteria for provision of special ed. This year, however, threw me a curveball blessing.
There are many categories of eligbility for special ed (i.e. deafness, vision impairment, autism, etc.) Abbie has always fallen into the category titled "multiple disabilites". This seemed entirely appropriate to me, as she has challenges on many fronts. This year, however, the special services coordinator, Ms. B., brought folders for all of us to review, containing the criteria worksheets for each category. For a student to meet the criteria, each question had to be answered "yes." I bit my lip when I read the first criteria under "multiple disabilities". It referred to "intellectual functioning three or more standard deviations below normal". The rest of the questions also included reference to significantly impaired intellectual function. I certainly didn't think this fit Abbie, but I didn't know what the staff would think, given their rather limited exposure to her.
As we finished reading through that worksheet, I didn't even have time to look up before Ms. B. stole my words, saying "I'm not sure Abbie really falls into this category anymore." WOW! They see her!!! They believe me, and her! As a team we determined that Abbie is eligible for special ed under a category titled "Other Health Challenges". In other words, I have a PHYSICALLY disabled daughter, who needs special ed services to work around these challenges to maximize her tremendous intellectual potential. That little girl has worked so, so hard, for so many years....my heart rejoices over her accomplishments and progress, and the fact that more and more she is able to make her own point, which is "I am able!"
She will be homeschooled this year, with collaboration of school therapy staff and perhaps a tutor. They are a great group of folks, so I am looking forward to seeing what we can do together to help Abbie.
We are blessed!
The day after we got home I had a meeting at the elementary school to revalidate Abbie's eligibility for special education and to discuss the reports written by school staff who had done observations in June and July. Usually with Abbie, the eligibility meeting is simply a check-the-block exercise because it is obvious to everyone that she meets the criteria for provision of special ed. This year, however, threw me a curveball blessing.
There are many categories of eligbility for special ed (i.e. deafness, vision impairment, autism, etc.) Abbie has always fallen into the category titled "multiple disabilites". This seemed entirely appropriate to me, as she has challenges on many fronts. This year, however, the special services coordinator, Ms. B., brought folders for all of us to review, containing the criteria worksheets for each category. For a student to meet the criteria, each question had to be answered "yes." I bit my lip when I read the first criteria under "multiple disabilities". It referred to "intellectual functioning three or more standard deviations below normal". The rest of the questions also included reference to significantly impaired intellectual function. I certainly didn't think this fit Abbie, but I didn't know what the staff would think, given their rather limited exposure to her.
As we finished reading through that worksheet, I didn't even have time to look up before Ms. B. stole my words, saying "I'm not sure Abbie really falls into this category anymore." WOW! They see her!!! They believe me, and her! As a team we determined that Abbie is eligible for special ed under a category titled "Other Health Challenges". In other words, I have a PHYSICALLY disabled daughter, who needs special ed services to work around these challenges to maximize her tremendous intellectual potential. That little girl has worked so, so hard, for so many years....my heart rejoices over her accomplishments and progress, and the fact that more and more she is able to make her own point, which is "I am able!"
She will be homeschooled this year, with collaboration of school therapy staff and perhaps a tutor. They are a great group of folks, so I am looking forward to seeing what we can do together to help Abbie.
We are blessed!
Sunday, July 11, 2010
What Abbie's Been Up To
It's been a couple months since a real Abbie update - I apologize for that. There is lots to share, as it has been an exciting summer so far.
Of primary interest, of course, is how she is doing with her hands, after the big surgery in late April. They look beautiful! Her scars are healing really well, and not causing much discomfort. Her thumbs would still prefer to move back toward her palms, so we are managing that with splints that she wears regularly. The outcome we had hoped for - better use of her hands, is coming to fruition as well. She is able to use a smaller switch in her hand which she can click using just the movement of her thumb and fingers. Previously, she would drop her hand backwards, into an undesirable position, to activate her switch. There was quite a cheer the first time she used the little switch!
Now that she can use her hand we determined it was time to really get back to work on communication and use of the computer for schoolwork. For now, the best strategy for Abbie is called "2-step scanning". "Two steps" means two switches for her - one in her hand and one above her foot. This method requires that she scans through available choices with one switch and then selects her choice with another switch.
We thought it would take a couple of weeks for her to learn how to do this, as it requires her to use her vision, reasoning, decision-making and motor skills simultaneously. I was able to borrow quite a bit of software to try out, and decided to start Abbie on one program geared simply toward switch training. She would have to use her "mover" switch (foot) three times to move a picture toward the target. Once it was at the target she would have to use her "selector" switch (hand) to make play the animation represented by the picture.
Two weeks....twenty minutes. Same thing in Abbie's world. She understood the concept right away, and was able to use the system smoothly in about 20 minutes. I skipped through the house gleefully - which yes, did elicit looks of "Does Mom need a nap or an asylum?" I explained to my curious crew that this skill, step-scanning, now opens the door for Abbie to do school on the computer. To write her own sentences, essays, poetry; to take tests to demonstrate her knowledge unequivocally, to paint and draw and color....to have fun!
This is a BIG step!
After considering what Abbie and our family went through this year during her attendance at school, we decided that we will be homeschooling her this year. We may have the support of some school district specialists, such as vision, speech, PT and OT, but that is up to the school at this point. It would be wonderful to include them in our plan, but if it is not feasible, we will move forward eagerly anyway.
Since Abbie will be homeschooled, I have the flexibility to teach her when she is at her brightest, but also to ensure that she has FUN. In this vein, I took her for a Music Therapy evaluation last week. It is not like a music class, which is just exposure, but rather is true therapy, with individualized goals and approaches. She absolutely loved making music by accompanying the piano with a tamborine and then a chime. Our primary goal, in addition to enjoyment, is to elicit more and more vocalization from Abbie. Many kids who experience ongoing music therapy use their voice more often.
The reason this is a goal is because Abbie is doing it already. She is talking, talking, talking...in her own way. Often when someone says "hello", she will quickly vocalize in response. I reinforce this by telling her that it's good manners to answer when someone says "hello", and commend her for being a polite young lady.
The other day at PT, her therapist was asking me many questions about what we do with Abbie at home, when she finally gave up and just started asking Abbie directly because she always answered before I did anyway.
On Wednesday the school vision specialist came to see us. We've never had a functional vision test for Abbie, so I was interested to see what this would be all about. Amy set up a black velcro-board five feet away from Abbie. We gave Abbie three choice to choose from, and then Amy showed her shapes and asked Abbie to identify them. She did really well. Then we used her foot to say "yes" and we would scan through shapes. Even we tried to trick her and show her a shape that was not within her choice pool, she did not fall for it. I was so proud of her. Amy is going to get something called a "CCTV" which can magnify any book or object placed on its tray. Our goal is to allow Abbie to read her own books.
We are at therapy 3 days a week, between PT, OT, Speech and Vital Stim (to strengthen her swallowing), so between that and shuttling around her brothers it is quite a busy summer. But, she continues to blossom and we are so grateful!
I hope that each of you is getting some extra time with your family this summer!
Of primary interest, of course, is how she is doing with her hands, after the big surgery in late April. They look beautiful! Her scars are healing really well, and not causing much discomfort. Her thumbs would still prefer to move back toward her palms, so we are managing that with splints that she wears regularly. The outcome we had hoped for - better use of her hands, is coming to fruition as well. She is able to use a smaller switch in her hand which she can click using just the movement of her thumb and fingers. Previously, she would drop her hand backwards, into an undesirable position, to activate her switch. There was quite a cheer the first time she used the little switch!
Now that she can use her hand we determined it was time to really get back to work on communication and use of the computer for schoolwork. For now, the best strategy for Abbie is called "2-step scanning". "Two steps" means two switches for her - one in her hand and one above her foot. This method requires that she scans through available choices with one switch and then selects her choice with another switch.
We thought it would take a couple of weeks for her to learn how to do this, as it requires her to use her vision, reasoning, decision-making and motor skills simultaneously. I was able to borrow quite a bit of software to try out, and decided to start Abbie on one program geared simply toward switch training. She would have to use her "mover" switch (foot) three times to move a picture toward the target. Once it was at the target she would have to use her "selector" switch (hand) to make play the animation represented by the picture.
Two weeks....twenty minutes. Same thing in Abbie's world. She understood the concept right away, and was able to use the system smoothly in about 20 minutes. I skipped through the house gleefully - which yes, did elicit looks of "Does Mom need a nap or an asylum?" I explained to my curious crew that this skill, step-scanning, now opens the door for Abbie to do school on the computer. To write her own sentences, essays, poetry; to take tests to demonstrate her knowledge unequivocally, to paint and draw and color....to have fun!
This is a BIG step!
After considering what Abbie and our family went through this year during her attendance at school, we decided that we will be homeschooling her this year. We may have the support of some school district specialists, such as vision, speech, PT and OT, but that is up to the school at this point. It would be wonderful to include them in our plan, but if it is not feasible, we will move forward eagerly anyway.
Since Abbie will be homeschooled, I have the flexibility to teach her when she is at her brightest, but also to ensure that she has FUN. In this vein, I took her for a Music Therapy evaluation last week. It is not like a music class, which is just exposure, but rather is true therapy, with individualized goals and approaches. She absolutely loved making music by accompanying the piano with a tamborine and then a chime. Our primary goal, in addition to enjoyment, is to elicit more and more vocalization from Abbie. Many kids who experience ongoing music therapy use their voice more often.
The reason this is a goal is because Abbie is doing it already. She is talking, talking, talking...in her own way. Often when someone says "hello", she will quickly vocalize in response. I reinforce this by telling her that it's good manners to answer when someone says "hello", and commend her for being a polite young lady.
The other day at PT, her therapist was asking me many questions about what we do with Abbie at home, when she finally gave up and just started asking Abbie directly because she always answered before I did anyway.
On Wednesday the school vision specialist came to see us. We've never had a functional vision test for Abbie, so I was interested to see what this would be all about. Amy set up a black velcro-board five feet away from Abbie. We gave Abbie three choice to choose from, and then Amy showed her shapes and asked Abbie to identify them. She did really well. Then we used her foot to say "yes" and we would scan through shapes. Even we tried to trick her and show her a shape that was not within her choice pool, she did not fall for it. I was so proud of her. Amy is going to get something called a "CCTV" which can magnify any book or object placed on its tray. Our goal is to allow Abbie to read her own books.
We are at therapy 3 days a week, between PT, OT, Speech and Vital Stim (to strengthen her swallowing), so between that and shuttling around her brothers it is quite a busy summer. But, she continues to blossom and we are so grateful!
I hope that each of you is getting some extra time with your family this summer!
Saturday, June 19, 2010
Checking Back In
I am so sorry for the extended lapse in updates. Most importantly, Abbie is doing great!
I have a great excuse for being incommunicado:
I have a great excuse for being incommunicado:
The twins and I in front of of the Trevi Fountain in Rome.
I accompanied their Latin class on a tour of Italy in early June. Wow -- or, rather, "Mamma Mia!!" You can imagine the challenges that arise herding over 40 7th and 8th graders through things like customs and foreign public transportation, but they did very well. I fell in love with Italy, and hope to go back one day with Ray.
Abbie was always in my heart, wherever each day happened to find us. One day early in the tour we traveled to Siena, within whose walls development stopped in the 1500s. Visiting the cathedral there was one of the highlights of the entire trip for me. It is stunning, and humbling to realize it was constructed in the 1300s.
As our time in the cathedral was coming to a close I caught a glimpse of another class mom and her daughter kneeling in prayer. I waited until they were done, and then asked whether I, as a non-Catholic, could also light a candle and pray. When they said "yes", I almost started to cry. I found my way to the rows of candles and chose one for Abbie. I could barely see to light it, so once I accomplished that I quickly went to kneeling and closed my eyes. I wept in a place that I know many mothers long ago also wept and begged, as the bubonic plague ravaged Siena.
As peace finally descended, I opened my eyes to find that I was kneeling before an enormous painting depicting the Bible story of the woman who needed healing reaching out to grasp the hem of Christ's robe. I felt again the warm laughter of God, reminding me that He knows....He knows.
That afternoon, in Florence, another mom, Caroline and I hiked to the top of the dome of the cathedral. Stunned by the view, I was feeling very far away from home. Caroline and I chatted briefly, and for some reason we said the words "Outrigger Club". Just then, from behind us, a couple asked "Are you from Hawaii??"
The woman looked at me and said, "You look so familiar! Do you have soccer players?"
"No," I answered. "I have a football player, a wrestler, and a water polo player...and general rascals, but no soccer stars.'
She looked stumped, so for some reason I said, "Hawaii Kai Church?"
Her face lit up and she said, "Yes! You are Abbie's mom!!"
I caught my breath. Twelve time zones away from my girl, I was "Abbie's mom". What a privilege.
We chatted for a while, and then as we walked away, Caroline said, "You've gotta tell Abbie that she has a fan club all over the world."
Towards the end of our journey, we visited a church in Rome called "St. Peter in Chains." Compared the the elaborate cathedrals and enormous structures found elsewhere, this church is relatively simple. Our tour guides explained the name of the church before we went in. Apparently, sometime during the 1300s there were two sets of chains inside the church. One night, somehow the chains became linked. No one could explain or understand how this had happened.
The set of chains is on display at the front of the sanctuary. The boys and I approached, paid 1 Euro for a candle to continue our "Candles Across Italy" tradition begun in Siena, and then turned toward the chains. I heard so insistently, "I am the Lord. I knit together what man cannot understand. I am the Lord. I knit together what man cannot." I froze. I pictured Abbie's brain, and prayed with thanksgiving to the Lord who knits together what I will never comprehend. This moment was so overwhelming that I can barely type about it now.
The longest leg of our return flight was from Frankfurt to San Francisco. Our group was spread out throughout the plane, and I was almost at the back. As I approached, and spotted my row-mates, the thought, "no, no, no" screamed through my brain. My seat was on the aisle. Next to that sat a young boy. Next to him was his father, holding a toddler. In front of him was the mother, sitting next to a young girl. This was going to be a nightmare!!
Or not.
They were the sweetest family from Finland, with the most well-behaved children. Lauri, the five-year-old boy next to me colored, ate a few sweets, and spoke rarely and quietly. Elin, the 18-month-old girl slept for 4 hours and then became my buddy. After she would press the buttons on the armrest we would both say "Yay!". A very non-Finnish thing to say, laughed her father, Matti.
As we talked about the blessings of children, Abbie came up. When Matti found out how Abbie had been injured, he became very interested, remarking that his father is a neurologist/neuroscientist in Finland. He has mostly studied Soviet/Eastern European research, which I think is terrific. For all the evils of Communism, those Soviet scientists were able to get funding for the wackiest studies - which often turned out not to be wacky at all. He asked permission to share Abbie's story with his father, just in case he would have any insight. He also asked me to tell Abbie that a family in Finland would be thinking of and rooting for her. Yes, she really does have a fan club all over the world. Abbie grinned when she heard this.
Our girl looked fantastic when I arrived home. I owe so much to Ray, Genevieve, Alicia, Rae, and Madeleine for making it possible for me to go so far away for so long. I think Abbie relished extra time with her Daddy, and I can tell that it meant a lot to him, too.
Now, it is back to work, and back to rehab from the surgery. But, we did bring some Italia home with us. Abbie defines the phrase on the T-shirt I brought her from Venice. "Ciao Bella" has never been more appropriate! We also went to the library on Thursday and checked out a bunch of books from Italy so she could learn about where we went. She soaked up a selection about Pompeii, and is enjoying music by Andrea Boccelli. I pray that one day Abbie and I will kneel together in Siena's cathedral, and offer a few bars of our unending song of thanks and praise.
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