HALLELUJAH!!! Ben was discharged on Thursday, Nov. 15 from the Family Treatment Center at Queen's Hospital in Honolulu, Hawaii. Wow, how much more formal can we get! He was extremely excited to "break out" and roasted in our rental car for 45 minutes while I packed up the apartment and checked out. Although he is healthy enough to no longer require 24 hour medical observation, he still struggles daily with anxiety and OCD. Ed and I were thrilled to bring him home, but there is still some apprehension on our part. We are now completely responsible for helping him cope and in the continuation of teaching him his own coping techniques. This week we have minimal assistance with Ben but that will increase next week. We will have a team consisting of a autism specialist, family guidance counsellor, psychiatrist, school psychologist, and working directly with us will be a skills trainer, home bound teacher and behaviour specialist. We have an amazing program set up and are just waiting to plug people into it. The woman who will be our skills trainer is in Israel and she returns at the end of this week. When she returns, it is all systems go! I'm confident that the team will meet Ben's needs and that he will be able to quickly catch up with his peers, academically.
Life is returning to normal (can it be true? is it really? am I dreaming?) and it feels so good to be back home and together again as a family.
Monday, November 19, 2007
Wednesday, November 14, 2007
Coming Home...I Hope
If all goes as planned, I will be bringing my large bundle of boy home this weekend. The doctor's say, he is as ready as he'll ever be. We are still waiting for temporary home bound assistance until longer term ones are found. Hopefully, the OCD will not do too much damage to Ben in a week's time. This is how long we anticipate having no assistance. Well, if anything unforeseen happens or he takes a turn for the worst, at least we know the ropes and have made the relationships. Thank goodness for that! The initial trauma I wouldn't wish on anyone.
Thank you for the hugs (real and cyber). Please continue on the journey with us a little while longer as we transition him back home and into a home bound school setting. Love to you all.
Thank you for the hugs (real and cyber). Please continue on the journey with us a little while longer as we transition him back home and into a home bound school setting. Love to you all.
Thursday, November 08, 2007
Ben Update
As my friend Xiam suggests...it's been a week Buller, what's the news?
The 4 day pass went well this last weekend although on Monday and Tuesday, Ben was noticeably in need of structure. Behavioural issues that had popped up on Sunday, reared their ugly heads on Monday and Tuesday. There were several threats to return "the child" to the ward early. It wasn't really a threat though. The staff had notified us that if he got to be too hard to handle, we were welcome to send him back. It did enter our minds more than once though. And we were instructed to use it as a tool to curve behavioural issues. Strict limits had to be set. Expectations had to be VERY clear. Yes, there were tears. Ben was so mad at me, he jammed his foot between the wall and the bed and got it stuck! I held my ground and eventually he loosened his leg and followed through on the instructions.
Things continue to go well. Ed and I are learning which actions to take and when with Ben. Ben is essentially well enough to come home (PRAISE JESUS!!) but at present, we have no support structure in place. We have a program for him to come home to, but we are waiting for a skills trainer and home bound teacher to plug into the program. The hospital will not release him until they are convinced that we have strong support in place in the home.
So ideally it looks like Ben will be on his way home in the next week or so. It is so hard to believe! What a long road!
The 4 day pass went well this last weekend although on Monday and Tuesday, Ben was noticeably in need of structure. Behavioural issues that had popped up on Sunday, reared their ugly heads on Monday and Tuesday. There were several threats to return "the child" to the ward early. It wasn't really a threat though. The staff had notified us that if he got to be too hard to handle, we were welcome to send him back. It did enter our minds more than once though. And we were instructed to use it as a tool to curve behavioural issues. Strict limits had to be set. Expectations had to be VERY clear. Yes, there were tears. Ben was so mad at me, he jammed his foot between the wall and the bed and got it stuck! I held my ground and eventually he loosened his leg and followed through on the instructions.
Things continue to go well. Ed and I are learning which actions to take and when with Ben. Ben is essentially well enough to come home (PRAISE JESUS!!) but at present, we have no support structure in place. We have a program for him to come home to, but we are waiting for a skills trainer and home bound teacher to plug into the program. The hospital will not release him until they are convinced that we have strong support in place in the home.
So ideally it looks like Ben will be on his way home in the next week or so. It is so hard to believe! What a long road!
Wednesday, October 31, 2007
From Hospital to Apartment Dweller
Ben had a fabulous weekend at home celebrating his birthday. His eyes were saucers when he entered our home on Thursday...fresh from a hospital breakout to his 13th birthday party. Grandma Warkentin was on hand and with Alyson, decorated the home to 
welcome his return and celebrate his big day. Ben had pre-ordered a steak dinner with potatoes and caesar salad and a large flat chocolate cake from Costco. He ate until he was a stuffed little turkey... although, after the initial gushing and oohing and aahing over the chocolate cake...he had absolutely no interest in eating it!!! Not even a bite! What a little turkey!The weekend went very well. His OCD tendencies and anxieties seem to improve with each weekend home and we were all very pleased with how well things had gone. He woke up Sunday with a smile, ran down to church and manned the A/V booth. After the service, he called down to me...in smiles...and waved. Happy to be back at home. He did, however, get 'stuck' in the booth and could not exit the room without encouragement and prompting from mom.
To his credit, Ben also made a huge step on Sunday. For weeks he had watched another little boy on his ward go home for the evening and return the next morning for day treatment. He occasionally would bring this concern up to me..."why can't I do that? Mom, I would sleep SO much better if I could stay with you at the apartment." I just assumed this was an appropriate measure taken by the hospital staff for this little boy's particular condition. Well on Sunday...before leaving for the airport to return to Honolulu, Ben resolved himself to ask the doctors if this would be an option for him. To his joy (and his parent's surprise), they agreed with him that it would be an appropriate thing for him as well. So as of Sunday, Ben has been sleeping with his dad at the apartment and returning in the early morning for his daily treatment. When asked how he slept that night...he said, "Oh Mom, it was amazing. I had the best sleep ever!"
Friday, on my way home from a team meeting at Ben's school, I realized just how truly blessed we are. The road's been tough, but the journey amazing. We have been overwhelmed by the support we have received, by the number of people all over the world that have heard our story and have told us that they are praying for our family. And by God's people and their willingness to donate financially so that we don't have to struggle, while we struggle! I am once again reminded that God is a BIG God and has BIG plans for everyone of us. I know, in my heart, that this experience will not only shape us as a family, but is a crucial part of Ben's development as a young teen and as a child of God.
Thanks for coming along on the ride with us. I think you can loosen your crash helmet!! (At least I hope so...please.... God?)
Wednesday, October 24, 2007
You Sunk My Battleship
Okay...well...I know, I know...it's been a whole week. I can't decide whether I am slipping or whether there's just not much to report. The way I see it...that's not exactly a bad thing. Are we falling under the age-old adage of 'no news is good news?' I think we might be. Honestly, Ben is doing quite well. He looks great, is eating pretty normally and has a very positive outlook on life. Not to say ihe isn't still struggling. That fact remains. The normal everyday struggles of sitting in contaminated chairs, holding a pencil when it's not "school time" and just a general "ants-in-the pants" demeanor. This child cannot sit still for any length of time, which makes it increasingly difficult to maintain any sort of meagre conversation with him. We had a very pleasant visit last evening. After many pleadings on my part to "just please sit down", we retreated to the play room in the ward and played a mean, competitive game of "Battleship". Oddly enough, I lost the game even though I had the extreme advantage of seeing Ben's board every time he flipped it over. I had to maintain some sort of integrity and decorum (as a parent of a child in the hospital), by continuing to play the game out as if I had seen nothing at all. It was tough but I'll live. Ben was thrilled to have won. I won the game just by sharing a smile and a laugh with the greatest son around. The evening ended with prayers and hugs (as it ends every evening) and a promise to see each other again tomorrow.
Ben was so sweet as he sacrificed his afternoon visit with me and allowed me to spend some
time with friends on the tour of the Arizona Memorial. Mark and Megan flew to Honolulu with Mark's mom from California and invited me on a "touristy" outing with them. The morning began with an early morning pickup in a "DucK" which is an amphibious vehicle previously used in the Honolulu harbour for transporting ammunition from boat to land. And as I learned, that's 
where the term "sitting duck" comes from.... AAH.....you say...that was an "aha" moment for me as well. The morning was filled with outdoor displays of giant missiles including a one-man Japanese suicide missile, a rescue chamber for those pesky bottom-of-the-sea submarine rescues, and naval gunner type stuff (sorry...I don't know what you call it). Ooh, my pacifistic veins are quivering!! Of course, as with all tours, costs were extra to see the USS Blowfin and USS Missouri, the submarine and battleship that were rescued after the fateful day of bombing in Pearl Harbour. (December 7, 1941.... of course, all you history buffs knew that though...didn't you??!!) I had to write it in so that I WOULD remember! Needless to say, we did not see the submarine and battleship up close and personal but chose instead to view the short film on Pearl Harbour. This was followed 
by a short ferry ride, and we were at the Arizona Memorial which was erected in memory of those who died during the surprise attack. The actual memorial is built over top the sunken battleship (I can't remember which one). We peered over the edge, and a murky eery shadow of an earlier era appeared below the surface. Rusty columns perched atop the water are the only immediate visual reminder of the watery tomb. Thousands of men died that day and some still rest on the ocean floor in 'eternal service' to their country.
And so it was interesting enough that Ben and I chose to play battleship the day before I visited the Memorial. As I pondered the chaos and destruction caused by the brass tipped missles, I reflected on the innocence of the game as I played it with Ben the night before. Not so innocent. And then I thought...why does society romanticize war, death and destruction? Why make a game out of it? Why do all nursery rhymes stem from the Black Death or some sort of other plague or poisoning that brings about suffering? What about....Wee Willie Winkie...Ring around the Rosy...Rock-a-bye Baby and other nursery rhymes that developed and evolved after such deadly eras. What kind of a sick people are we anyways??
With that rant out of the way...I am no closer to the answer... but have chosen to ponder on the lesser questions of life...why have all of the birds on this hospital property lost all their toes on one foot?? They have one little grey stub and one healthy foot. What happens to these little digits? Does the resident cat nibble on them when they're not looking? How does a bird with wings to fly, lose its little toes?
I'd be just as happy to have that one questioned answered.
ps. I forgot to add, Ben is being allowed a 4 day pass this weekend as he celebrates his 13th birthday tomorrow!! Hip hip hooray!!!
Ben was so sweet as he sacrificed his afternoon visit with me and allowed me to spend some
time with friends on the tour of the Arizona Memorial. Mark and Megan flew to Honolulu with Mark's mom from California and invited me on a "touristy" outing with them. The morning began with an early morning pickup in a "DucK" which is an amphibious vehicle previously used in the Honolulu harbour for transporting ammunition from boat to land. And as I learned, that's 
where the term "sitting duck" comes from.... AAH.....you say...that was an "aha" moment for me as well. The morning was filled with outdoor displays of giant missiles including a one-man Japanese suicide missile, a rescue chamber for those pesky bottom-of-the-sea submarine rescues, and naval gunner type stuff (sorry...I don't know what you call it). Ooh, my pacifistic veins are quivering!! Of course, as with all tours, costs were extra to see the USS Blowfin and USS Missouri, the submarine and battleship that were rescued after the fateful day of bombing in Pearl Harbour. (December 7, 1941.... of course, all you history buffs knew that though...didn't you??!!) I had to write it in so that I WOULD remember! Needless to say, we did not see the submarine and battleship up close and personal but chose instead to view the short film on Pearl Harbour. This was followed 
by a short ferry ride, and we were at the Arizona Memorial which was erected in memory of those who died during the surprise attack. The actual memorial is built over top the sunken battleship (I can't remember which one). We peered over the edge, and a murky eery shadow of an earlier era appeared below the surface. Rusty columns perched atop the water are the only immediate visual reminder of the watery tomb. Thousands of men died that day and some still rest on the ocean floor in 'eternal service' to their country.And so it was interesting enough that Ben and I chose to play battleship the day before I visited the Memorial. As I pondered the chaos and destruction caused by the brass tipped missles, I reflected on the innocence of the game as I played it with Ben the night before. Not so innocent. And then I thought...why does society romanticize war, death and destruction? Why make a game out of it? Why do all nursery rhymes stem from the Black Death or some sort of other plague or poisoning that brings about suffering? What about....Wee Willie Winkie...Ring around the Rosy...Rock-a-bye Baby and other nursery rhymes that developed and evolved after such deadly eras. What kind of a sick people are we anyways??
With that rant out of the way...I am no closer to the answer... but have chosen to ponder on the lesser questions of life...why have all of the birds on this hospital property lost all their toes on one foot?? They have one little grey stub and one healthy foot. What happens to these little digits? Does the resident cat nibble on them when they're not looking? How does a bird with wings to fly, lose its little toes?
I'd be just as happy to have that one questioned answered.
ps. I forgot to add, Ben is being allowed a 4 day pass this weekend as he celebrates his 13th birthday tomorrow!! Hip hip hooray!!!
Wednesday, October 17, 2007
The Good...and the Bad
Yippee, Yee-Haw and general Hooray!!!
Ben was allowed to escape the ward and fly home to Kauai this past Saturday and Sunday!! For the most part, all went well. Saturday was a day of cranial confusion and Ben's brain immediately 'tried' to slip back into some old and nasty OCD habits. Habits once conquered on the ward in Queen's now presented themselves in the home environment and the transferability of Ben's coping mechanisms required alot of careful watching and encouragement on mom and dad's part. Sunday flew by almost like a breeze...Ben entered the church early to avoid the 'rush of the crowds' and planted himself in the Audio/Visual Booth for the entire service where he belongs. He exclaimed how great it felt to be back on a computer!
Returning to Honolulu on Sunday evening presented no great problems as Queen's Hospital has become somewhat of a safe place for him. The days continue to go well and small baby steps continue to be made. The leaps and bounds of earlier days are gone, but we are thankful that there continues to be improvement daily.
Tuesday morning saw support staff from Kauai meeting in conjunction with the nursing staff for a giant conference to start building bridges for Ben to return to the island and return to school. At the meeting, it was noted by the Hospital Clinical Psychologist, that under extensive testing, Ben scored a whopping 90/100 in his RCMA's! Okay, I felt like whooping it up....that's MY boy...he's a brainiac....oh yeah!....uh ha....okay...no, stop...really... it's not a good thing, i found out. The normal is less than 60. RCMA's stand for Revised Children's Manifest Anxiety Scale. This means that the anxiety that is plaguing Ben was absolutely through the roof. Out of 100 classic anxieties/concerns/ worries, he has a staggering 90 of them!!! Apparently the psychologist feels that he is so anxious about his family unit, and his mom and dad, that he is being hijacked to perform ridiculous rituals so nothing bad will happen to us!! I was stunned....I mean i knew that he always said "I have to do this or something bad will happen" but I never thought he was relating it to our safety. That was a tough one for me. For someone so innocent and young to be consumed about his mom's and dad's well-being.
We do have some good news and some bad news....
GOOD: Ben's doctor's are encouraging as much time at home as possible. This means that Ben will fly home every Friday and back to Honolulu every Sunday evening.
BAD: Ben's in-hospital treatment on Oahu will continue into the middle of November. Any hopes of bringing him home by Oct. 25 were shot out the window at yesterday's meeting. Phooey...
For now, it's business as usual and I'm off for a walk to see a close up/ inspectional display on the masks from the Broadway show, "The Lion King". I am hoping to see elaborate and intricate designs in the masks of Simba, Mufasa, Scar, Nala and Zazu.
A Hui Hou!!
Ben was allowed to escape the ward and fly home to Kauai this past Saturday and Sunday!! For the most part, all went well. Saturday was a day of cranial confusion and Ben's brain immediately 'tried' to slip back into some old and nasty OCD habits. Habits once conquered on the ward in Queen's now presented themselves in the home environment and the transferability of Ben's coping mechanisms required alot of careful watching and encouragement on mom and dad's part. Sunday flew by almost like a breeze...Ben entered the church early to avoid the 'rush of the crowds' and planted himself in the Audio/Visual Booth for the entire service where he belongs. He exclaimed how great it felt to be back on a computer!
Returning to Honolulu on Sunday evening presented no great problems as Queen's Hospital has become somewhat of a safe place for him. The days continue to go well and small baby steps continue to be made. The leaps and bounds of earlier days are gone, but we are thankful that there continues to be improvement daily.
Tuesday morning saw support staff from Kauai meeting in conjunction with the nursing staff for a giant conference to start building bridges for Ben to return to the island and return to school. At the meeting, it was noted by the Hospital Clinical Psychologist, that under extensive testing, Ben scored a whopping 90/100 in his RCMA's! Okay, I felt like whooping it up....that's MY boy...he's a brainiac....oh yeah!....uh ha....okay...no, stop...really... it's not a good thing, i found out. The normal is less than 60. RCMA's stand for Revised Children's Manifest Anxiety Scale. This means that the anxiety that is plaguing Ben was absolutely through the roof. Out of 100 classic anxieties/concerns/ worries, he has a staggering 90 of them!!! Apparently the psychologist feels that he is so anxious about his family unit, and his mom and dad, that he is being hijacked to perform ridiculous rituals so nothing bad will happen to us!! I was stunned....I mean i knew that he always said "I have to do this or something bad will happen" but I never thought he was relating it to our safety. That was a tough one for me. For someone so innocent and young to be consumed about his mom's and dad's well-being.
We do have some good news and some bad news....
GOOD: Ben's doctor's are encouraging as much time at home as possible. This means that Ben will fly home every Friday and back to Honolulu every Sunday evening.
BAD: Ben's in-hospital treatment on Oahu will continue into the middle of November. Any hopes of bringing him home by Oct. 25 were shot out the window at yesterday's meeting. Phooey...
For now, it's business as usual and I'm off for a walk to see a close up/ inspectional display on the masks from the Broadway show, "The Lion King". I am hoping to see elaborate and intricate designs in the masks of Simba, Mufasa, Scar, Nala and Zazu.
A Hui Hou!!
Friday, October 12, 2007
Homecoming....of sorts
I am at home resting after a week-long chest cold....those nasty things here in Kauai head straight for my lungs before I even know it. This means it has been almost a full week since I have been able to see Ben. As I am the 'Keeper of the Blog", it seems to have put me into a sort of disadvantaged place to comment...but well....here goes.......
Ben has appeared to have reached a plateau in his progress. The last month brought a short series of ups and downs but with a marked improvement and we began to recognize the boy who is the Ben we know and love!! Thank you to the Healer. The next step to improvement is seemingly requiring alot more encouragement and mental gymnastics as we try to remain one step ahead of his conniving OCD.
Saturday, Ben and Ed return to Kauai for a weekend pass. Ben is anxious to attend church for "a few minutes". For our loving KMC family...know that Ben will physically look well and hopefully he'll be in good spirits. Please feel free to love him gently but not overwhelm him. We are hoping to create as natural an environment for him as possible. If you already have a relationship with him...please be natural in your conversation.....but if I may request.....this is not the time to initiate relationships in effort to support him. This may overwhelm him if too many people approach him to ask him 'how he is'.
As mentioned earlier, Ben looks physically well but is struggling mentally with delusional thoughts that affect and interefere with his day-to-day living. Please know that whatever we say to him (such as helping him talk back to thoughts) comes as a result of many meetings with psychiatrists and support staff and is meant to help him progress in his fight against OCD.
If there are no blips and if things progress as scheduled, Ben will return to Queen's on Sunday.
Ben has appeared to have reached a plateau in his progress. The last month brought a short series of ups and downs but with a marked improvement and we began to recognize the boy who is the Ben we know and love!! Thank you to the Healer. The next step to improvement is seemingly requiring alot more encouragement and mental gymnastics as we try to remain one step ahead of his conniving OCD.
Saturday, Ben and Ed return to Kauai for a weekend pass. Ben is anxious to attend church for "a few minutes". For our loving KMC family...know that Ben will physically look well and hopefully he'll be in good spirits. Please feel free to love him gently but not overwhelm him. We are hoping to create as natural an environment for him as possible. If you already have a relationship with him...please be natural in your conversation.....but if I may request.....this is not the time to initiate relationships in effort to support him. This may overwhelm him if too many people approach him to ask him 'how he is'.
As mentioned earlier, Ben looks physically well but is struggling mentally with delusional thoughts that affect and interefere with his day-to-day living. Please know that whatever we say to him (such as helping him talk back to thoughts) comes as a result of many meetings with psychiatrists and support staff and is meant to help him progress in his fight against OCD.
If there are no blips and if things progress as scheduled, Ben will return to Queen's on Sunday.
Tuesday, October 09, 2007
I Hate Stress
I've been very hesitant to update....it's now Tuesday and I am sick at home with a nasty chest cold. I'm embarrassed to say all I know is that Ben is doing well but that he's had some "funny" days as his dad reports. When Ed visits Ben during visiting hours, Ben's mind always seems to be on something else. Books, tv, nintendo are all taking priority over actually visiting with Dad. Poor Ed is feeling a bit slighted. I am cheering...after all, isn't that how a normal 12 year old boy is supposed to act?
Here is the reason for my hesitancy....Saturday we were blessed with 8 rapturous whole hours outside the hospital with Ben!!! We toured the Aloha Tower and the Marine Museum where they have a rare skeleton of an enormous Blue Whale. All was going well...until the accumulating stress of the last few months chose to rear its ugly head between Mom and Dad. Oh, what bad timing!! It seems a volcano was made of an ant hill and things just erupted into a mean full blown argument. Oh...the shame!!! Why couldn't it have picked a better time? We were out with our whole family for just 1 day. ONE DAY!! Boy, Satan was just picking on us! The last 3 hours or so (we hang our heads) was a bust. Ben was extremely gracious in his attempt to mediate but alas, Mom's hormones made her grumpy. Need I say more??
Here is the reason for my hesitancy....Saturday we were blessed with 8 rapturous whole hours outside the hospital with Ben!!! We toured the Aloha Tower and the Marine Museum where they have a rare skeleton of an enormous Blue Whale. All was going well...until the accumulating stress of the last few months chose to rear its ugly head between Mom and Dad. Oh, what bad timing!! It seems a volcano was made of an ant hill and things just erupted into a mean full blown argument. Oh...the shame!!! Why couldn't it have picked a better time? We were out with our whole family for just 1 day. ONE DAY!! Boy, Satan was just picking on us! The last 3 hours or so (we hang our heads) was a bust. Ben was extremely gracious in his attempt to mediate but alas, Mom's hormones made her grumpy. Need I say more??
Wednesday, October 03, 2007
A Better Day
Well Ben was released into our care from 12 - 4 pm. yesterday. Mom and Dad were a little nervous because of his recent setback, but in a direct answer to prayer, Ben bounced right back and is doing quite well again. Ah...this roller coaster of life. As my friend Tamara put it..."Why does this life have to be so hard?"
We spent a quiet afternoon together with Ben after dropping Alyson off at the Ice Palace with some friends. Believe it or not....they do have an ice skating rink on Oahu...but I'd bet the farm that the arena temperature wasn't as cold as the rinks back in Canada. It felt a little too comfortable in there with my shorts on!!
Ben coped well in the outside world with only little glitches/ anxieties to work through. It was a very special time filled with laughter and honestly, just plain relief at having some normalcy in our lives.
This afternoon, Aly and I went to visit Ben and had fun playing together. A huge praise item is that Ben was finally able to play Nintendo. Now normally, I would not be cheering for this, but because of his sensory issues and anxieties, Ben has not been able to touch/pick-up a phone, remote, computer keyboard or anything else for the last 2 months. Yesterday, he fixed a remote control (that another patient had thrown against a wall and broke) and today he showed me the video game that he was playing earlier!!! THIS IS REALLY HUGE!!!! I don't like Nintendo but I love what it is currently able to bring out in my son.
Now THIS is more like it!!
We spent a quiet afternoon together with Ben after dropping Alyson off at the Ice Palace with some friends. Believe it or not....they do have an ice skating rink on Oahu...but I'd bet the farm that the arena temperature wasn't as cold as the rinks back in Canada. It felt a little too comfortable in there with my shorts on!!
Ben coped well in the outside world with only little glitches/ anxieties to work through. It was a very special time filled with laughter and honestly, just plain relief at having some normalcy in our lives.
This afternoon, Aly and I went to visit Ben and had fun playing together. A huge praise item is that Ben was finally able to play Nintendo. Now normally, I would not be cheering for this, but because of his sensory issues and anxieties, Ben has not been able to touch/pick-up a phone, remote, computer keyboard or anything else for the last 2 months. Yesterday, he fixed a remote control (that another patient had thrown against a wall and broke) and today he showed me the video game that he was playing earlier!!! THIS IS REALLY HUGE!!!! I don't like Nintendo but I love what it is currently able to bring out in my son.
Now THIS is more like it!!
Tuesday, October 02, 2007
How Much Can It Hold?
Nobody has ever measured, not even the poets, how much the heart can hold. ~Zelda Fitzgerald
This quote was sent to us by some wonderful friends from the Makarusa Missionary Church. It really struck me as it encapsulates how Ed and I feel on a day to day basis.
We've had so many challenges these last few weeks...and have also successfully realized the payoffs of hard work. And then...these last few days....oy....Ben experienced a dramatic regression. The delusional thoughts came back and along with them, the entrapment of a 12 year old boy ensnared by an illogical brain. With no warning, we were back to square one. ARG.........WE HAD MADE SUCH GOOD PROGRESS!!
Oh God, how many times Lord, can we cry out...
With the Risperdal once again administered and the fight back on, Ben and his parents are learning (it is SO hard) to fight back against the taunts of OCD in its severest form. He has to learn to label OCD as the "bad part" of his brain and verbally talk back to it telling it to go away. Once he can successfuly overcome these horrible thoughts presented by OCD, he can overcome its lies.
Ben was scheduled for a 4 hour outing this afternoon with our family, but the nursing staff are currently unable to confirm the physician's request. With the regression, we don't know if it will be honored. And so at this point we don't know if he'll be able join us outside the hospital.
As for Alyson, we are enjoying our time with her. Yesterday, she and I went to the Honolulu Zoo and Aquarium for the afternoon to relax and forget about life for awhile. Today...well...we were hoping to complete the family with a fun afternoon. That remains to be seen.
This quote was sent to us by some wonderful friends from the Makarusa Missionary Church. It really struck me as it encapsulates how Ed and I feel on a day to day basis.
We've had so many challenges these last few weeks...and have also successfully realized the payoffs of hard work. And then...these last few days....oy....Ben experienced a dramatic regression. The delusional thoughts came back and along with them, the entrapment of a 12 year old boy ensnared by an illogical brain. With no warning, we were back to square one. ARG.........WE HAD MADE SUCH GOOD PROGRESS!!
Oh God, how many times Lord, can we cry out...
With the Risperdal once again administered and the fight back on, Ben and his parents are learning (it is SO hard) to fight back against the taunts of OCD in its severest form. He has to learn to label OCD as the "bad part" of his brain and verbally talk back to it telling it to go away. Once he can successfuly overcome these horrible thoughts presented by OCD, he can overcome its lies.
Ben was scheduled for a 4 hour outing this afternoon with our family, but the nursing staff are currently unable to confirm the physician's request. With the regression, we don't know if it will be honored. And so at this point we don't know if he'll be able join us outside the hospital.
As for Alyson, we are enjoying our time with her. Yesterday, she and I went to the Honolulu Zoo and Aquarium for the afternoon to relax and forget about life for awhile. Today...well...we were hoping to complete the family with a fun afternoon. That remains to be seen.
Friday, September 28, 2007
Ben
Our afternoon visit with Ben was cut short by a meeting with the psychiatrist working on Ben's case. She invited him to attend so he could spend time with us on the condition that he would sit in a certain chair (one that reminded him of school). Even his desire to be with us couldn't overcome the fear he had of sitting in that chair and 50 minutes went by without him. We could hear him crying in the other room but the psychiatrist was very firm with him....in effort to help him face and overcome his fears.
We were left with a short 10 minute visit with our very unhappy son.
On the bright side, a friend of ours flew Alyson to Honolulu so she could be with us during the week long fall break. We are excited to be reunited with her!!
We were left with a short 10 minute visit with our very unhappy son.
On the bright side, a friend of ours flew Alyson to Honolulu so she could be with us during the week long fall break. We are excited to be reunited with her!!
Wednesday, September 26, 2007
Another Update
Well guess what? My brain suddenly cleared from the fog....and...I had an epiphany!! There is a medical library on campus, that guess what....has internet access!!! You guessed it. It sure took me long enough, but there should be no excuses now!! I am one smart cookie...when my brain isn't tired and full.
Benjamin has had several good days in a row now. His personality is starting to return and he is joking/teasing his mom and dad, and the staff. It is wonderful that the staff is beginning to see the fun and gentle pre-teen that he truly is. He is eating, drinking, showering, talking, opening doors...all those things we take for granted were a struggle for him. Now he is able to do them normally. He is still having difficulties with school associations, both verbally and physically. He cringes at the mention of school, pencil, classroom, etc. and his hand is "paralyzed" and literally useless for the rest of the day if it even so much as touches a pencil. Sitting on certain chairs is hard, as well as entering specific rooms such as the sensory room on the ward. He still has quite a severe and active head bob/tic and we are hoping that those will decrease as his exposure to things increases.
He looks good and says he feels great! He has mentioned to me that the prayers of God's people are working. We encourage you to continue praying up until his release and until his transfer home has been completed successfully.
Saturday we had a tiny scare in that the nurses overdosed him on the anti-psychotic drug, Risperdal. The drug is supposed to relieve the bad/illogical thoughts in his brain. With the accidental overdose, came a temporary condition called "Dystonia" where his muscles in this left arm and neck contracted and moved involuntarily. It was off set by an administration of Benadryl and so far, has had no lasting effects.
We are looking forward to next week as Alyson has fall break (one week off), and she will come to Honolulu to stay with us. Ben has promised to work hard and in turn, we are hoping that the doctor's will grant him a few hours outside the ward to head to the zoo or waterpark for some family fun .
Our goal is to have Ben healthy enough to be released by his birthday, which is Oct. 25. Of course, we are hoping for sooner but to ease any further disappointments, we are thinking worse case scenario.
Again, I cannot say enough how much your prayers mean to us!! I cannot imagine going through this alone, and with no hope or Jesus in our hearts. How do non-believers do it?
Benjamin has had several good days in a row now. His personality is starting to return and he is joking/teasing his mom and dad, and the staff. It is wonderful that the staff is beginning to see the fun and gentle pre-teen that he truly is. He is eating, drinking, showering, talking, opening doors...all those things we take for granted were a struggle for him. Now he is able to do them normally. He is still having difficulties with school associations, both verbally and physically. He cringes at the mention of school, pencil, classroom, etc. and his hand is "paralyzed" and literally useless for the rest of the day if it even so much as touches a pencil. Sitting on certain chairs is hard, as well as entering specific rooms such as the sensory room on the ward. He still has quite a severe and active head bob/tic and we are hoping that those will decrease as his exposure to things increases.
He looks good and says he feels great! He has mentioned to me that the prayers of God's people are working. We encourage you to continue praying up until his release and until his transfer home has been completed successfully.
Saturday we had a tiny scare in that the nurses overdosed him on the anti-psychotic drug, Risperdal. The drug is supposed to relieve the bad/illogical thoughts in his brain. With the accidental overdose, came a temporary condition called "Dystonia" where his muscles in this left arm and neck contracted and moved involuntarily. It was off set by an administration of Benadryl and so far, has had no lasting effects.
We are looking forward to next week as Alyson has fall break (one week off), and she will come to Honolulu to stay with us. Ben has promised to work hard and in turn, we are hoping that the doctor's will grant him a few hours outside the ward to head to the zoo or waterpark for some family fun .
Our goal is to have Ben healthy enough to be released by his birthday, which is Oct. 25. Of course, we are hoping for sooner but to ease any further disappointments, we are thinking worse case scenario.
Again, I cannot say enough how much your prayers mean to us!! I cannot imagine going through this alone, and with no hope or Jesus in our hearts. How do non-believers do it?
Friday, September 21, 2007
Another Good Day
Short and sweet today...Ben was able to go to class (on the psych ward) and complete his assignments in class, slept well, ate and drank to the staff's satisfaction, made his own lunch with the other children...pizza ... AND... offered to make another for the staff!! That's huge!!
I think the meds are kicking in!!!
Thank you...Jesus!!
I think the meds are kicking in!!!
Thank you...Jesus!!
Thursday, September 20, 2007
A Good Day...it's a Relative Thing
A good day for others might be a job promotion, raise, visit from an old friend, or just...no problems to deal with, at work or home.
Yesterday, Ben had a good day. For him that means he was able to put on sweats, brush his teeth, open a door and sat on a chair for 5 minutes!!! Oh yeah baby, FIVE!! Good?...well GREAT I'd say...let me tell you...this kid forged mountains yesterday!
What seems oddly enough like an everyday-don't-even-think-about task has literally become an obstacle for Ben. He was unable to sleep the other night because his couldn't lie down on his bed. Someone else had touched it. He stood all night and went without sleep. He was very pale and exhausted yesterday when we visited him. It was all I could do to prevent myself from scooping him up and taking him home.
The other night after a second dose of the anti-psycotic medication...Ben looked at us in fear, tears rolling down his pale cheek...and burst out "something's wrong, something's really wrong in my head." I have to say, I kind of got worried about a drug interaction but the symptoms decreased and he was much calmer (though anxious and exhausted) yesterday.
I flew home this a.m. for a brief 30 hours or so to welcome Grandma and arrange the home for her to take care of Aly. I am flying back to Honolulu Friday evening to relieve Ed so he can return to Kauai and preach on Sunday.
Baby steps and small mercies.
Yesterday, Ben had a good day. For him that means he was able to put on sweats, brush his teeth, open a door and sat on a chair for 5 minutes!!! Oh yeah baby, FIVE!! Good?...well GREAT I'd say...let me tell you...this kid forged mountains yesterday!
What seems oddly enough like an everyday-don't-even-think-about task has literally become an obstacle for Ben. He was unable to sleep the other night because his couldn't lie down on his bed. Someone else had touched it. He stood all night and went without sleep. He was very pale and exhausted yesterday when we visited him. It was all I could do to prevent myself from scooping him up and taking him home.
The other night after a second dose of the anti-psycotic medication...Ben looked at us in fear, tears rolling down his pale cheek...and burst out "something's wrong, something's really wrong in my head." I have to say, I kind of got worried about a drug interaction but the symptoms decreased and he was much calmer (though anxious and exhausted) yesterday.
I flew home this a.m. for a brief 30 hours or so to welcome Grandma and arrange the home for her to take care of Aly. I am flying back to Honolulu Friday evening to relieve Ed so he can return to Kauai and preach on Sunday.
Baby steps and small mercies.
Monday, September 17, 2007
Ben Update
I apologize for the lapse in blogging, but it has been near impossible to connect to the internet for almost a week. Praise God we were able to resolve that today!
Sept. 11, after a traumatic flurry of events (including an MRI and Pediatric Neuro Consult--all normal, no organic explanation for the symptoms) Ben was admitted to the Child Psychiatric ward in Queen's Medical Center, Honolulu. It's aptly named the Family Treatment Center. He was admitted under the diagnosis of psychosis, acute anxiety and OCD. It is a locked unit with many rules and regulations but the staff seem knowledgable. It was hard at first to be denied access to our child and we were allowed to bend the rules initially but have now been restricted to visiting during the hours of 1-2 pm and 7-8 pm which is double the normal visiting hours.
After a week of not eating and drinking, we cheered as baby steps were taken with Ben's first sip of water. He was SO dehydrated and so dry. The physician's orders were to initiate an IV Bolus 3x/day and NG tube if liquids were not immediately ingested. At this time, the liquids remain an easier sell than food. His intake of the latter is still very minimal.
Today was a great day in the sense that Ben was able to have Prozac administered alongside an anti-psychotic drug named Rispiradol (?sp) that will help alleviate the delusional thoughts swirling around his brain. We were able to get him to eat honey ham today as well as 1 grape and 450ml of a nutritional fruit drink. He met his liquid quota for the day and we were extremely proud of him.
Our best case scenario for release would include a miracle...that would be release from the hospital in a weeks time. Ben is still considered acute and realistically will be in another 2 weeks. If things progress more slowly, he will be deemed a sub-acute case, and it may be another month or two before he is released. Of course, we are praying for the miracle.
A huge hug and thanks for those who have been faithfully praying for our family and supporting us in more practical ways. We cherish each and every one of you. To our family in Winnipeg and in the rest of Canada, we love you. Rest assured that we have friends that are family here that are constantly checking in on us. Three couples here alone in Honolulu have been tremendous in their support for us.
Please continue to pray to the Healer, and Calmer of Ben's fears. Pray for sleep for Ben as his nights have been hard. Pray for strength and clarity of mind for his exhausted parents.
We love you all.
Sept. 11, after a traumatic flurry of events (including an MRI and Pediatric Neuro Consult--all normal, no organic explanation for the symptoms) Ben was admitted to the Child Psychiatric ward in Queen's Medical Center, Honolulu. It's aptly named the Family Treatment Center. He was admitted under the diagnosis of psychosis, acute anxiety and OCD. It is a locked unit with many rules and regulations but the staff seem knowledgable. It was hard at first to be denied access to our child and we were allowed to bend the rules initially but have now been restricted to visiting during the hours of 1-2 pm and 7-8 pm which is double the normal visiting hours.
After a week of not eating and drinking, we cheered as baby steps were taken with Ben's first sip of water. He was SO dehydrated and so dry. The physician's orders were to initiate an IV Bolus 3x/day and NG tube if liquids were not immediately ingested. At this time, the liquids remain an easier sell than food. His intake of the latter is still very minimal.
Today was a great day in the sense that Ben was able to have Prozac administered alongside an anti-psychotic drug named Rispiradol (?sp) that will help alleviate the delusional thoughts swirling around his brain. We were able to get him to eat honey ham today as well as 1 grape and 450ml of a nutritional fruit drink. He met his liquid quota for the day and we were extremely proud of him.
Our best case scenario for release would include a miracle...that would be release from the hospital in a weeks time. Ben is still considered acute and realistically will be in another 2 weeks. If things progress more slowly, he will be deemed a sub-acute case, and it may be another month or two before he is released. Of course, we are praying for the miracle.
A huge hug and thanks for those who have been faithfully praying for our family and supporting us in more practical ways. We cherish each and every one of you. To our family in Winnipeg and in the rest of Canada, we love you. Rest assured that we have friends that are family here that are constantly checking in on us. Three couples here alone in Honolulu have been tremendous in their support for us.
Please continue to pray to the Healer, and Calmer of Ben's fears. Pray for sleep for Ben as his nights have been hard. Pray for strength and clarity of mind for his exhausted parents.
We love you all.
Sunday, September 09, 2007
Hug
2:30 in the morning and I am woken from my slumber by cries of "Help me, Help me...I need someone". Fearing that Ben had awoken from his sleep and was now plagued with thoughts swirling around in his mind, I bolted from the bed and bent down over his towel wrapped body on the living room carpet. I said "Mommy's here Ben, how can I help you?" His bleary voice replied, "I just needed a hug. I had a bad dream." My heart touched by a simple need, a smile drawn to my lips, and I was more than willing to respond to his feeble request. I whispered "You can call me anytime for one of those. Do you need anything else?" He sleepily responded, "I'm okay now thanks."
Anytime Ben.
Anytime Ben.
Saturday, September 08, 2007
When it Rains....
Wouldn't you know...it just doesn't stop!
Right on the heels of our "relaxing" weekend, Ben and Ed were both diagnosed with swimmer's ear. With Ben's adamant refusal to see the pediatrician, there came a flurry of 6 arms, 6 legs and additional body parts. Mom and Dad in a physical struggle to put shorts on Ben and literally throw the 12 year old over dad's shoulder and off away into the van. The brain is continuing to play its sordid tricks on Ben and as they drove away, I watched Ben repeatedly try to open the van door so he could leap out. My heart raced, then sank....I hoped the child locks were on.
Diagnosis confirmed and at 4 drops/3x a day, Ben's small life box is getting even smaller. His mind has tricked him into believing that he cannot eat or drink after the administration of any kind of medication...whether it's eye cream, ear drops, or oral suspension. The ear has to be healed by sedation for the MRI on Tuesday and so the struggle begins. The ear drops go in....and all logic goes out. Ben no longer eats lunch or supper and hasn't for the last 2-3 days. All food and drink after 9 a.m. is taboo. He eats 2 bowls of cereal before 9 in the morning. That is his last meal/liquid of the day for the next 24 hours. This is obviously a huge concern for us. If this continues, we will have no choice but to hospitalize him.
3 more sleeps until the MRI on Oahu. We are praying to be able to get on the plane without too much difficulty as Ben has been increasingly agitated and aggressive. With post-911 regulations and nervous airline employees, who knows what can happen.
Please continue to keep Ben and all of us in your prayers.
Right on the heels of our "relaxing" weekend, Ben and Ed were both diagnosed with swimmer's ear. With Ben's adamant refusal to see the pediatrician, there came a flurry of 6 arms, 6 legs and additional body parts. Mom and Dad in a physical struggle to put shorts on Ben and literally throw the 12 year old over dad's shoulder and off away into the van. The brain is continuing to play its sordid tricks on Ben and as they drove away, I watched Ben repeatedly try to open the van door so he could leap out. My heart raced, then sank....I hoped the child locks were on.
Diagnosis confirmed and at 4 drops/3x a day, Ben's small life box is getting even smaller. His mind has tricked him into believing that he cannot eat or drink after the administration of any kind of medication...whether it's eye cream, ear drops, or oral suspension. The ear has to be healed by sedation for the MRI on Tuesday and so the struggle begins. The ear drops go in....and all logic goes out. Ben no longer eats lunch or supper and hasn't for the last 2-3 days. All food and drink after 9 a.m. is taboo. He eats 2 bowls of cereal before 9 in the morning. That is his last meal/liquid of the day for the next 24 hours. This is obviously a huge concern for us. If this continues, we will have no choice but to hospitalize him.
3 more sleeps until the MRI on Oahu. We are praying to be able to get on the plane without too much difficulty as Ben has been increasingly agitated and aggressive. With post-911 regulations and nervous airline employees, who knows what can happen.
Please continue to keep Ben and all of us in your prayers.
Monday, September 03, 2007
Waipouli ReVisited? Not any time soon.....
A long awaited weekend of fun and relaxation at the newest Waipouli condo resort in Kapa'a, took an interesting turn. (The resort is gorgeous by the way. We got the cheapest room and I thought they'd made a mistake and given us the wrong room).
Let's just start out by saying...I don't think the meds have kicked in yet...
We thought that getting Ben away from everything would help relieve his symptoms. Unfortunately the opposite was true. The resort was a minefield...of triggers....just like our lives everyday have become. Imprisoned to a certain spot in our living room, Ben is a prisoner of his mind in our own home.
The exits signs around the resort property, the kids in the pool, too many people...too many people...panic attacks....bathing 8-10 times/day, the exhaustion of not being able to sit down anywhere, anytime...the barrage of new lighting, sounds, odors, and illogical thoughts whirling around his teenage brain...another panic attack...the inability to use a different toilet in a new room....can't sleep on the bed, can't sleep on the floor....can't wear my favourite sweats because they touched that chair and are now contaminated....can't open the door, any door....can't bathe by myself, can't get my own towel...and please, wrap it around me...i can't do it...it won't let me
Imagine living life this way. It's become every day life for Ben and for us.
And so the weekend adventure became a living hell for Ben and Ed. Ben would not accept help from me...only his dad and so a potentially relaxing time became very stressful for Ed. Ed and Ben returned home every evening to sleep and would return every morning in an effort for Ed to get some relaxation. It didn't really work out for them.
After much conversation and wondering if the weekend was even worth it, we felt that regardless of us, our Alyson needed a fun break and she and I spent alone time together while Ed worked with Ben.
How we longed for a respite worker!
The blood test results all came back normal and I cried. I know it's great news, but I was hoping for something legitimate to show and to back up our concerns.
ps. my apologies about the lack of photos. my digital camera died a quick but uneventful death. it is surprising how long it lasted after the near death drowning in Lake Winnipeg (Canada) several summers ago. R.I.P. my little canon.
Let's just start out by saying...I don't think the meds have kicked in yet...
We thought that getting Ben away from everything would help relieve his symptoms. Unfortunately the opposite was true. The resort was a minefield...of triggers....just like our lives everyday have become. Imprisoned to a certain spot in our living room, Ben is a prisoner of his mind in our own home.
The exits signs around the resort property, the kids in the pool, too many people...too many people...panic attacks....bathing 8-10 times/day, the exhaustion of not being able to sit down anywhere, anytime...the barrage of new lighting, sounds, odors, and illogical thoughts whirling around his teenage brain...another panic attack...the inability to use a different toilet in a new room....can't sleep on the bed, can't sleep on the floor....can't wear my favourite sweats because they touched that chair and are now contaminated....can't open the door, any door....can't bathe by myself, can't get my own towel...and please, wrap it around me...i can't do it...it won't let me
Imagine living life this way. It's become every day life for Ben and for us.
And so the weekend adventure became a living hell for Ben and Ed. Ben would not accept help from me...only his dad and so a potentially relaxing time became very stressful for Ed. Ed and Ben returned home every evening to sleep and would return every morning in an effort for Ed to get some relaxation. It didn't really work out for them.
After much conversation and wondering if the weekend was even worth it, we felt that regardless of us, our Alyson needed a fun break and she and I spent alone time together while Ed worked with Ben.
How we longed for a respite worker!
The blood test results all came back normal and I cried. I know it's great news, but I was hoping for something legitimate to show and to back up our concerns.
ps. my apologies about the lack of photos. my digital camera died a quick but uneventful death. it is surprising how long it lasted after the near death drowning in Lake Winnipeg (Canada) several summers ago. R.I.P. my little canon.
Tuesday, August 28, 2007
Ben Update
Just a brief update on our son, Ben.
Further trips to the psychiatrist resulted in a tentative diagnosis which was confirmed today by a Naturopathic Physician....bet you've never even heard of it....it's pretty rare...did you expect anything less from the Bullers? It's called PANDA. That's right PANDA. What's THAT you say? That's what I said. Here goes....Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections. Bet this will intrigue my friends in the Crossmatch Lab!!
Ben likely had an asymptomatic strep infection several months ago and it went systemic to the point where it crossed the blood/ brain barrier causing the basal ganglia in his brain to become enlarged and inflamed. The symptoms he is experiencing today is the natural body's reaction. The next question is... will an antibiotic help. Oh no, no, no. That would be too easy. Apparently no literature supports the administration of an antibiotic at this point. It would be useless.
We've added additional tests including an Anti-Streptolysin Titre which will confirm whether or not Ben's been exposed to Strep A in the past several months. We are still trying to finagle our way into an MRI on the 12th. However with this stinky US system, you can't put the cart before the horse and we are waiting approval from the insurance company.
The moral of our experience...get that sore throat checked out...swabbed and cultured (not just a streptex)....especially if your child is prepubescent! Heed my warning.
Further trips to the psychiatrist resulted in a tentative diagnosis which was confirmed today by a Naturopathic Physician....bet you've never even heard of it....it's pretty rare...did you expect anything less from the Bullers? It's called PANDA. That's right PANDA. What's THAT you say? That's what I said. Here goes....Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections. Bet this will intrigue my friends in the Crossmatch Lab!!
Ben likely had an asymptomatic strep infection several months ago and it went systemic to the point where it crossed the blood/ brain barrier causing the basal ganglia in his brain to become enlarged and inflamed. The symptoms he is experiencing today is the natural body's reaction. The next question is... will an antibiotic help. Oh no, no, no. That would be too easy. Apparently no literature supports the administration of an antibiotic at this point. It would be useless.
We've added additional tests including an Anti-Streptolysin Titre which will confirm whether or not Ben's been exposed to Strep A in the past several months. We are still trying to finagle our way into an MRI on the 12th. However with this stinky US system, you can't put the cart before the horse and we are waiting approval from the insurance company.
The moral of our experience...get that sore throat checked out...swabbed and cultured (not just a streptex)....especially if your child is prepubescent! Heed my warning.
Thursday, August 23, 2007
Ben
A wonderful trip home to Canada brought many surprises including our return home and the effect it would have on our 12 year old son. Benjamin was born with Asperger's and severe sensory defensiveness. As a result he's never been really good at peer relationships, fine motor activities, self-care and personal hygiene. During the trip home in July, we noticed some frequent handwashing going on. It seemed unusual, especially after he hugged or touched his mother.
Reluctant to go back to Hawaii and filled with anxiety, he made the trip and actually really did do quite well. Upon our arrival home and as the onset of a new school year approached, the frequency of the handwashing escalated to an uncontrollable degree. The middle school start up date of August 1st came and went and he was unable to begin a new school year.
Meeting after meeting, and appointment after appointment, and this is what we know... Ben has developed an acute and severe case of OCD. It has literally taken over his life and ours and has left him imprisoned in his own body. In a sense, his brain has been hijacked. Under advisement of a psychiatrist, we have initiated a treatment plan which includes the administration of an anti-anxiety/ anti-depressant drug called Lexapro. It takes 8 weeks to reach the desired effect. 2 weeks have gone by so far and no relief is in sight. The frequency of the handwashing has decreased although increased in length, and he has compensated the former with a painful looking head tic.
Blood tests are in the works...drawn this morning...tests for a complete chemistry panel, heavy metals panel (ie. for lead, asbestos, etc), a complete blood count and a celiac panel have been ordered (we threw the last one in for good measure as 4 out of 6 siblings in Laurie's family have recently been diagnosed with Celiac Disease - including Laurie). September 12th we head out to Oahu for a pediatric neurology consult and possible MRI to rule out any brain lesions. Our psychiatrist is concerned at the acuteness and severity of the symptoms and just needs to rule anything serious out.
It has been a difficult 3 weeks since we've returned home to Hawaii. We're feeling pretty helpless right now as we try to offer Ben some kind of relief. We have been offered placement in the adolescent psych ward on Oahu but.....yeah, okay really....over my dead body that's all I have to say.
Please pray that the rest of us can keep it together until the meds kick in, and pray that they will work.
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