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Monday, November 14, 2011 11:04 PM CST
"We find a place for what we lose. Although we know that after such a loss the acute stage of mourning will subside, we also know that we shall remain inconsolable and will never find a substitute. No matter what may fill the gap, even if it be filled completely, it nevertheless remains something else". --- Sigmund Freud (1961)
In memory of my son
Bailey Drake Robinson
September 22, 1998 to November 15, 2005
I remain inconsolable while joyfully celebrating my many "something elses".....
Love, BaileysMom
Tuesday, March 31, 2009 5:02 PM CDT
Always loving you and missing you, Bailey.
The sun shines bright as Spring arrives.
It's a hopeful time of the year.
Love,
your Mumma
Friday, August 29, 2008 12:06 AM CDT
I know I've entered the lyrics to this song before, but it always seems to speak for me perfectly.
Summer has come and passed
The innocent can never last
wake me up when september ends
like my fathers come to pass
seven years has gone so fast
wake me up when september ends
here comes the rain again
falling from the stars
drenched in my pain again
becoming who we are
as my memory rests
but never forgets what I lost
wake me up when september ends
summer has come and passed
the innocent can never last
wake me up when september ends
ring out the bells again
like we did when spring began
wake me up when september ends
here comes the rain again
falling from the stars
drenched in my pain again
becoming who we are
as my memory rests
but never forgets what I lost
wake me up when september ends
Summer has come and passed
The innocent can never last
wake me up when september ends
like my fathers come to pass
seven years has gone so fast
wake me up when september ends
wake me up when september ends
wake me up when september ends
Never forgetting what I have lost, and always grateful for what I have.
Christine (Bailey's Mom)
Tuesday, May 6, 2008 4:36 AM CDT
Yesterday at bed time Britta was sitting at the foot of the staircase waiting for me, when she said “What does this say?”
When I went to her she was pointing to a spot, Britta-eye-level, on the wall.
There was written “I love you” in Bailey’s little handwriting!
That was the sweetest, warmest moment I have had in a long time.
It felt like finding a treasure or winning the lottery- but so much better!
Thank you, Bailey, and we love you, too!
Love- Mumma
Wednesday, February 13, 2008 3:55 PM CST
Missing my sweetie pie Bailey as Valentine's Day approaches. I always feel him guiding me.
Wherever You Will Go
-The Calling
So lately, been wondering who will be there to take my place
When I'm gone, you'll need love
To light the shadows on your face
If the great wave shall fall
It'd fall upon as all
And between the sand and stone
Could you make it on your own
If I could, then I would
I'll go wherever you will go
Way up high or down low
I'll go wherever you will go
And maybe, I'll find out
The way to make it back someday
To watch you, to guide you
Through the darkest of your days
If the great wave shall fall
It'd fall upon as all
Well I hope there's someone out there
Who can bring me back to you
If I could, then I would
I'll go wherever you will go
Way up high or down low
I'll go wherever you will go
Runaway with my heart
Runaway with my hope
Runaway with my love
I know now, just quite how
My life and love might still go on
In your heart and your mind
I'll stay with you for all of time
If I could, then I would
I'll go wherever you will go
Way up high or down low
I'll go wherever you will go
If I could turn back time
I'll go wherever you will go
If I could make you mine
I'll go wherever you will go
Monday, January 28, 2008 6:18 AM CST
“My Mom Lies”
- Author Unknown
My Mom, she tells a lot of lies
She never did before.
From now until she dies,
She'll tell a whole lot more.
Ask my Mom how she is
And because she can't explain,
She will tell a little lie
Because she can't describe the pain.
Ask my Mom how she is,
She'll say, "I'm alright".
If that's the truth, then tell me,
why does she cry each night?
Ask my Mom how she is,
She seems to cope so well.
She didn't have a choice you see
nor the strength to yell.
Ask my Mom how she is,
"I'm fine, I’m well, I'm coping".
For God's sake Mom, just tell the truth
just say your heart is broken.
She'll love me all her life,
I loved her all of mine.
But if you ask her how she is,
She'll lie and say she's fine.
I am Here in Heaven.
I cannot hug from here.
If she lies to you don't listen,
Hug her and hold her near.
On the day we meet again,
We'll smile and I'll be bold.
I'll say, “You’re lucky to get in here, Mom
With all the lies you told!"
Tuesday, January 15, 2008 4:32 AM CST
Twenty-six months..... that seems like such a long time, and yet just a moment ago you were here.
Nothing is the same without you.
Mumma
Thursday, November 15, 2007 4:21 AM CST
To die completely, a person must not only forget but be forgotten, and he who is not forgotten is not dead.
-Samuel Butler
Sunday, November 11, 2007 8:46 AM CST
Pictures Of You
-The Last Goodnight
This is the clock upon the wall
This is the story of us all
This is the first sound of a newborn child,
Before he starts to crawl
This is the war that's never won
This is a soldier and his gun
This is the mother waiting by the phone,
Praying for her son
Pictures of you, pictures of me
Hung upon your wall for the world to see
Pictures of you, pictures of me
Remind us all of what we used to be
There is a drug that cures it all
Blocked by the governmental wall
We are the scientists inside the lab,
Just waiting for the call
This earthquake weather has got me shaking inside
I'm high up and dry
Pictures of you, pictures of me
Hung upon your wall for the world to see
Pictures of you, pictures of me
Remind us all of what we used to be
Confess to me, every secret moment
Every stolen promise you believed
Confess to me, all that lies between us
All that lies between you and me
We are the boxers in the ring
We are the bells that never sing
There is a title we can't win no matter
How hard we might swing
Pictures of you, pictures of me
Hung upon your wall for the world to see
Pictures of you, pictures of me
Remind us all of what we used to be
Pictures of you, pictures of me
Hung upon your wall for the world to see
Pictures of you, pictures of me
Remind us all of what we used to be
Sunday, October 21, 2007 7:08 AM CDT
Summer has come and passed
The innocent can never last
wake me up when september ends
like my fathers come to pass
seven years has gone so fast
wake me up when september ends
here comes the rain again
falling from the stars
drenched in my pain again
becoming who we are
as my memory rests
but never forgets what I lost
wake me up when september ends
summer has come and passed
the innocent can never last
wake me up when september ends
ring out the bells again
like we did when spring began
wake me up when september ends
here comes the rain again
falling from the stars
drenched in my pain again
becoming who we are
as my memory rests
but never forgets what I lost
wake me up when september ends
Summer has come and passed
The innocent can never last
wake me up when september ends
like my fathers come to pass
seven years has gone so fast
wake me up when september ends
wake me up when september ends
wake me up when september ends
Saturday, September 22, 2007 7:28 AM CDT
Today my Bailey would be nine years old.
Bailey was so small when he passed away I could still carry him in my arms. I see other nine year olds and they are so tall!! I wish, I wish, I wish to have had the honor of watching him grow and change as the years passed, but that was not to be. I am grateful for my memories which lately bring with them many tears, and while I am so pained by the fact that Bailey is not physically in my home, his presence is very strong in my heart.
Wednesday, July 18, 2007 7:18 PM CDT
one, two, three, four, five-let's go for a drive!
On rainy days we used to load up the car and go for long drives to wherever... we would drive, stop at all the "scenic vistas" with the tourists, splash around in a river, have a picnic, but the best part was the singing! We (Bailey, Brandon and I) would sing along with whatever the radio played and as we got deeper in the valleys or higher in the mountains and lost all radio signal (poor) Todd would be subjected to MY CAR CD's..... primarily the Beatles!
Todd and I recently realized we had somehow avoided that family tradition since Bailey had passed away, so last Sunday when we four were home wondering what to do on a drizzly, chilly, gray afternoon, we hit the open, somewhat foggy, road.
First stop, local strawberry patch. Britta and I wanted to pick our own but Todd apparently suffered some berry picking trauma as a child so that was out. We had to buy them off the cart.
Next stop, about an hour later, the river (name unknown)for a picnic in the mist. We managed to scare away the one other family enjoying the river so the whole place was ours, which was good, since Britta has taken to throwing rocks in the river like her "bigbigbrother" Brandon but lacks his good aim. After finding the perfect rock to bring home we were on the road once again!
At some point I finally realized we had forgotten the best part of a rainy day car ride- the singing!!! By this point we were barely getting any good reception on the radio, and my beatles CD's were all at home. Luck was with us when a good old Beatles tune came on, boy was I thrilled!!! Brandon and I were just begining to harmonize (in our opinions only) when little Britta suddenly yelled from the back "STOP THAT SINGING!" Brandon and I of course attempted to sing louder and with more enthusiasm! She was not having it. What a dull drive home.
Since that Sunday I've tried a lot of different music in the car while taking Britta to school.... she is not yet impressed. I'm pretty sure it's not mine or brandon's singing voices she's opposed to, just our taste in music, haha!
All I can think of, driving through town or down the West Side Road (without BrittaTheMusicCritic in the car) is my Bailey and our shared love of the Beatles when sung at the top of your lungs!! I miss having him as my singing partner. I'm grateful for Brandon to share this with, Happy Todd has not removed all devices which play music from the car, and so amused by our little Britta's reaction to it all!
Enjoy the rainy days!
Chris
Thursday, April 5, 2007 7:31 AM CDT
Impossible to believe that a relatively short time ago I had never even heard of Adrenoleukodystrophy.
I am now intimately familiar with the family of diseases and many families fighting against them.
Ally Brennan was diagnosed with Metachromatic Leukodystrophy (MLD) just over a year ago, and her family said goodbye to her here on Earth on the evening of April 2.
Hold your children close and share your love with them every minute of the day.
Christine
Thursday, February 1, 2007 6:59 PM CST
What I miss.....
Being the mom of a cub scout- pine wood derby season is here and I remember so vividly Baileys excitement. I still have his plans for his car. I treasure that car and his first place trophy and the memory of him winning- so proud, he had truly done it on his own! I feel blessed to have this memory, to have had that time, for so many friends have lost their children much younger than Bailey.
Being with Bailey on ski-day- No school on Thursday's, skiing for all the elementary school children, and how excited I was to see him out there trying so hard to make the "pizza" shape with his skis- and how scared I was at the same time he would be hurt. (Britta may soon be borrowing your helmet, Bailey, I think you would have liked that) I miss ski-day every single Thursday. I get to spend plenty of time in the North Lodge and on the slopes at Cranmore, though, as Brandon has this year joined the high school race team. They practice each day after school and race all day each Friday and I get to be there to help and cheer the Eagles on! (I always remember cheering you on at that mountain, too, Bailey)
(I miss you at Attitash the most. I get to go there all weekend for work and I feel your presence there so much. I have some of the happiest memories of you, Brandon, daddy and I there at that mountain. I've been taking Britta there occasionally. She gets the VIP treatment just as you did, Bailey)
Sweetie Pies- Valentines Day is coming. The best part has always been making hand made valentines with my children. Brandon is too old, Bailey is not here with us, and Britta will be with me- making the biggest mess possible! I know it will be fun sharing this with my baby girl but I still so miss my baby boy.
I miss how quiet this house can be without Bailey. Britta is in bed by 7 sharp and sound asleep in dream land. Brandon is off having a social life or in his room on the phone. It gets way too quiet here in the evening and I remember the sound of you jumping out of bed a hundred times a night!
I miss hearing Baileys name. I think people are afraid to mention him. That makes me feel like he might be forgotten even though I know that is not true. I miss being called "Bailey's Mom"- you know how you are not "Christine" or "Mrs. Robinson"- you are known as so and so's mom. I like being called "Britta's Mom" of course, and I hate to think what the high schoolers are calling me, hahaha! But I miss being referred to as "Bailey's mom"
Brandon does not like to mention Bailey at this time. Britta loves to talk about Bailey, though, and to hear the book I wrote for the children read to her, and to see her pictures of Bailey whom she refers to as "my Bailey"..... that makes me smile so much.
Every smile seems accompanied by a tear these days.. but at least there are some smiles, right?
Thanks for listening.
Love,
Bailey's Mom
Wednesday, November 29, 2006 10:13 PM CST
**Update**
Donovan passed on today, January 20, at 9:25 PM.
He is a real hero, his family is just amazing, and we should all be so blessed to come across someone as special in our life time.
On November 15, 2005 my little Bailey left my life here on Earth.
A short while later another mom on the unit approached me- having heard the news of Bailey's passing.
We chatted, she sympathized, and somehow knew holding her little Donovan, who Bailey loved, might offer me a tiny bit of comfort (how did you know that, Melissa?).
It did.
I stood in the halls of 5200 holding Baby Donovan. Months later I would stand in the grass, outside in the fresh air, holding him once again, as I attended the Rainbow of Heroes Walk.
I could have held that little teddy bear for hours.
He gave me such comfort.
This evening I ask that you visit Donovan's site:
http://www.caringbridge.org/in/babydonovan/
Perhaps you can all pray for the comfort only the Lord can give to this family as they have learned Donovan's second transplant has failed.
Maybe you can send your positive thoughts and energy to Donovan's family.
Possibly you are in a position to help them with a financial contribution, thereby easing one burden.
But at least we can all visit his site at the adress above and let he and his family know he is thought of.
We should all do just what we can do.
I myself will be storming Heaven with prayers this evening.
Christine Robinson
Tuesday, November 21, 2006 5:46 PM CST
I see trees of green, red roses too
I see them bloom for me and you
And I think to myself, what a wonderful world
I see skies of blue and clouds of white
The bright blessed day, the dark sacred night
And I think to myself, what a wonderful world
The colours of the rainbow, so pretty in the sky
Are also on the faces of people going by
I see friends shakin' hands, sayin' "How do you do?"
They're really saying "I love you"
I hear babies cryin', I watch them grow
They'll learn much more than I'll ever know
And I think to myself, what a wonderful world
Yes, I think to myself, what a wonderful world
Wednesday, November 15, 2006 7:44 AM CST
Bailey Drake Robinson
September 22, 1998 – November 15, 2005
Time Does Not Bring Relief
Time does not bring relief; you all have lied
Who told me time would ease me of my pain!
I miss him in the weeping of the rain;
I want him at the shrinking of the tide;
The old snows melt from every mountain-side,
And last year’s leaves are smoke in every lane;
But last year’s bitter loving must remain
Heaped on my heart, and my old thoughts abide!
There are a hundred places where I fear
To go, - so with his memory they brim.
And entering with relief some quiet place
Where never fell his foot or shone his face
I say, ‘There is no memory of him here!’
And so stand stricken, so remembering him.
Edna St Vincent Millay
Friday, November 3, 2006 7:22 PM CST
All day long I have been thinking of updating Bailey's web site, trying to come up with something to say, but there's really nothing- one year ago today Bailey recieved his transplant- and that's all I've got.
Friday, October 13, 2006 7:31 AM CDT
Happy Sixteenth Birthday to Brandon David---
Brandon, my first-born child, who really taught me to be a good parent as I pretended to be teaching him.
Brandon, once a tiny baby I held in my arms now approaching over 6 feet in height, able to pick me right up off the ground.
Brandon, patient as Bailey would follow him throughout his days, annoying as it must have been, patient as Britta now does the same, not quite so annoying, but a little sad.
Brandon, who went through test after test and waited to find he did not have the disease, to which he responded, “I wish it was me and not Bailey”.
Brandon, who so often sat aside while Bailey and Britta’s needs were met first, knowing his turn would be third but never last.
Brandon, who set aside his own wants, to care for his baby sister, Britta's needs.
Brandon, who could have acted out in a million angry ways and chose just to dye his hair fire truck red.
Brandon, who sends glow-sticks tied to helium balloons floating up, up, up for Bailey.
Brandon, who has a sense of humor heavy on sarcasm that lightens moods heavy with sadness.
Brandon, who deserves much more than I can ever provide on his birthday and on every day, and accepts what he is given with real gratitude and thankfulness.
Happy Sixteenth Birthday to Brandon David!
Friday, September 22, 2006 6:16 AM CDT
Today would be my little hero's 8th Birthday.
This week I've been missing what used to be so much.
Last year at this time Bailey and I were in North Carolina, busy with appointments, hopeful about the transplant, missing everyone at home.
We did have a very nice Birthday although we were far from home. He woke up in the hotel to decorations and gifts. He received gifts from nurses and doctors at appointments that day. We returned to our hotel to find the room filled with balloons and cards from his teachers and friends. We went to Chuck E Cheese where he played happily for hours.
He was such a trooper! I know he must have been missing home, missing a big party with his friends, but he was happy and thankful for the celebration that we did have.
We are missing hime so much, and trying very hard to be happy and thankful for what we do have, like Bailey taught us.
Happy, Happy Birthday to the best little boy, Bailey!
Saturday, September 16, 2006 7:15 AM CDT
Close your eyes
Have no fear
The monster's gone
He's on the run and your daddy's here
Beautiful, beautiful, beautiful
Beautiful boy
Beautiful, beautiful, beautiful
Beautiful boy
Before you go to sleep
Say a little prayer
Every day in every way
It's getting better and better
Beautiful, beautiful, beautiful
Beautiful boy
Beautiful, beautiful, beautiful
Beautiful boy
Out on the ocean sailing away
I can hardly wait
To see you come of age
But I guess we'll both just have to have patience
'cause it's a long way to go
A hard row to hoe
Yes it's a long way to go
But in the meantime
Before you cross the street
Take my hand
Life is what happens to you
While you're busy making other plans
Beautiful, beautiful, beautiful
Beautiful boy
Beautiful, beautiful, beautiful
Beautiful boy
Out on the ocean sailing away
I can hardly wait
To see you come of age
But I guess we'll both just have to be patient
'cause it's a long way to go
A hard row to hoe
Yes it's a long way to go
But in the meantime
Before you go to sleep
Say a little prayer
Every day in every way
It's getting better and better
Beautiful, beautiful, beautiful
Beautiful boy
Darling, darling, darling
Darling boy
-John Lennon
Friday, August 25, 2006 5:12 AM CDT
It does not seem possible, but it is true, two years ago today we were told of Bailey's diagnosis.
We have changed so much in two years that went by way too quickly. We went from celebrating our children's "firsts" to making the most of each as though it would be the last...
I remember everything about August 25, 2004. Britta was just a baby and we were on her first camping trip, not far from home, when we received word that we needed to get Bailey to Dartmouth-Hitchcock right away. I remember packing up camp in a fog, I did not want to leave, I knew the news would not be good.
I remember exactly how Dr. Filiano explained the diagnosis, and exactly what it all meant...
I remember crying the entire two hour drive home while Bailey slept peacefully in his car seat.
I think I never stopped crying...
I remember wondering how to explain it all to Brandon, how do you tell a 14 year old his little brother is dying?
I also remember praying Bailey would never know how serious the disease was... but I believe he knew all along.
I wonder today if we'll go back to celebrating the "firsts" again instead of mostly mourning the "lasts" and I think we will one day find we have gently come to live with them all.
We finally took Britta and Brandon on a camping trip this year. It was just not the same, but we did not expect it to be, and it's ok if we don't find the same joy in camping as we once did. Bailey was too huge of a presence to be able to go on with it all and not feel his absence so greatly.
I know he is free of pain, I know he has no fear, I know he is with God... and I know I would give anything to change it all and have him here with me- I'm selfish that way.
Tuesday, August 15, 2006 5:21 AM CDT
2 Corinthians 1:3-7
Praise be to the God & Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.
Saturday, July 15, 2006 8:48 PM CDT
Today Britta and I went to visit Thomas the Tank Engine! He was visiting in North Conway, and it was so exciting for her. She has recently become a Thomas fan.
When I told her it was time to leave to go see Thomas, she went out to the sand box and came back in with Bailey's wooden Thomas train... he had buried a bunch of trains out there last fall... and she insisted Bailey's train come along with us.
It was such a sad moment, yet I'm happy she remembers Bailey so much.
Today also marks 8 months since Bailey passed away, and somehow it still feels like just moments ago.
I remember so much last summer taking Bailey to meet Thomas... how excited he was! And Britta's excitement made me miss him even more today.
A big thank you to my friends who cheer me up, make me laugh, and are so patient with me as I go through each day... some good, some terrible. I appreciate you all so much for your love and true friendship.
Christine
Saturday, June 10, 2006 6:15 AM CDT
Friday my family and I visited Pine Tree Elementary School, where Bailey was a student.
This was my first visit since Bailey left us here on Earth.
The second grade class had earned money to purchase a bench which they dedicated to Bailey.
It was a beautiful dedication and I'm so thankful to the families and staff members who worked so hard to create a place to remember Bailey.
It was wonderful to see all of Bailey's friends, they are all growing so fast! The children have changed so much since I last saw them!
I am so thankful for the wonderful friendship you each shared with Bailey.
Love,
Bailey's Mom
Tuesday, June 6, 2006 9:37 PM CDT
This evening I learned another friend of Bailey's has died today. Kaylee, the first friend Bailey made in North Carolina, the little girl who gave us both so much comfort as we missed our Britta, is gone.
Recently I realized I had lived 35 years never knowing the pain of losing a young child. Now, in this past year or so, I have known far too many.
Christopher
Lawrence
Alex
Joseph
Micah
and now Kaylee
and my own Bailey
You're all in my thoughts every single day. I thank you so much for the lessons you each have taught me, the great gifts you gave to me, without even intending to.
I'm a much better person for knowing you.
Christine
Sunday, May 21, 2006 6:54 AM CDT
Good morning!
As the morning arrives bright and sunny we are so thankful, especially after all the rainy days.
Today we will celebrate Britta's second birthday, grateful for this little bright and sunny child.
When Bailey and I first arrived in Durham for pre-transplant testing, we had the honor to meet a beautiful family, the Krause's. Bailey was immediately drawn to their daughter, Kaylee, who is just days older than Britta. She had many "Britta-like" qualities and he just fell in love with her.
Once admitted to the unit we realized at the time there were many very young patients at the time, toddlers and babies, and they all made Bailey smile so much, he found so much comfort in these littlest hero's.
When I recently travelled back to Durham I had the great honor of visiting with many of Bailey's favorite baby-friends again, Kaylee, too, who at the time was back on unit 5200. She still possesses many "Britta-like" qualities... my favorite: shaking her head and saying "unh-unh!" to any question she is asked!
Please visit Kaylee's web site at:
www.caringbridge.org/visit/kayleekrause
and get to know this bright and sunny little girl. She is currently in the PICU working very hard to be strong and healthy, and I just know her family would appreciate our prayers and support so much.
Enjoy the sun!
Christine
Monday, May 15, 2006 8:57 PM CDT
I cannot believe it has been six months since my little boy left us here on Earth. Can it really be that much time?
Nothing is the same without him here, and I wonder when the days will become easier.
Saturday, May 6, 2006 4:29 PM CDT
What an amazing day! The Rainbow of Heroes Walk was larger than ever and earned a record amount of moeny which will be of so much help to families!
It was great to see so many staff members in attendance and to let them know how we are all doing. From the Child Life Program, Family Support Services, Social Workers, and Nurses, all were essential to Bailey's stay at Duke.
I saw many of Bailey's old neighbors from the unit, and it was so special to me to see each child and hear how they are all doing... they don't call this the heroes walk for nothing! These beautiful children are truly heroes!
I even got to hold one of my favorite children from the unit, which made the whole trip perfect for me!
(Thank you for the cuddle time, Donovan!!
Kian and Mason, you both are doing super! Keep up the good work!
It was great to see you there, as well, Brendan, I'm so proud of you!)
Kelly Brown was there, as well, representing Hunters Hope and introduced me to many families whose children have one of the leukodystrophies. It was amazing to be with these people. Oddly one family is from New Hampshire! How strange to travel all the way to North Carolina and meet a family from Farmington!
The wall of heroes was so spectacular, so many photos and stories shared there, I'm so glad I could witness it and make Bailey a part of it.
The balloon release was so emotional for me. Carrying Bailey's balloon through the walk, and letting it go with hundreds of others was very symbolic.
Another special family Bailey and I had met on the unit were there today, as well. Joseph passed away just a day after Bailey died. It was so wonderful to see his Mom and Grandparents again.
I'm so impressed by the large turnout, so thankful for all the help in raising funds for the program, and feel just so lucky to have experienced this powerful day.
In the evening Hunters Hope families got together. We met at Michelle's apartment, where she is staying with her daughter Ashleigh, who has Krabbe disease, another Leukodystrophy.
There I met Debbie who had come here years ago all the way from Hawaii. Her son Noah passed away after his transplant and she had come to participate in the walk in his memory.
I met Amber and her gorgeous baby girl, Zoey who also has Krabbe.
It was amazing to just sit in a room with these moms. They have the greatest attitudes, a wonderful sense of humor, and great spirit. I wish I could visit with them every day. Thanks for the great evening!
Christine Robinson
Friday, May 5, 2006 7:55 PM CDT
Today has been such a wonderful day! Wonderful, and emotional, too.
This morning I spent time walking familiar paths Bailey and I used to enjoy, and I just felt so close to him.
I met with Karla, from Pastoral Services. She was a great comfort to Bailey and I when we were here, and she was a comfort to me today, as well. It was great to catch her up on how everyone in my family is doing.
The best part of the day, by far, was visiting a little friend of Bailey's on the unit. It was so good for me to see this beautiful little girl working so hard to be strong and healthy! Keep up the good work, Kaylee!
Tomorrow is the Rainbow of Heroes Walk which I am really looking forward to.
Thank you so much to all who sponsored me for this event. Because of your generosity many families here will receive the support that makes a huge difference in their quality of life!
Love, love, love,
Christine Robinson
Thursday, May 4, 2006 8:49 PM CDT
Yay, I'm here!
Riding the train was not nearly as fun without Bailey, but I am glad I travelled here that way.
I'm staying in a hotel just across the street from the hospital and I'm looking forward to visiting some special kids that I know there tomorrow.
Chris
Wednesday, May 3, 2006 6:49 AM CDT
Alone we can do so little; together we can do so much.
- Helen Keller
Good morning!
Today is the day I leave for my trip to Raleigh, North Carolina.
Thank you so much to everyone for your extremely generous donations to The Rainbow of Heroes Walk! You have helped to make a big difference for the Family Support Program, and the wonderful families the program benefits.
I will be updating the web site during my big adventure so check in if you would like to see what I'm up to while at Duke University.
With gratitude,
Christine Robinson
Saturday, April 1, 2006 8:29 AM CST
*Update*
Today our little friend Micah, another ALD transplant patient whom I have mentioned before, passed away in NC at Duke.
Please join me in prayers of strength and comfort for Micah's family.
Here is a link to their web site if you would care to learn more about this special baby and leave a message of hope for his family:
www.caringbridge.org/al/micah
Good morning, everyone.
I am very excited to share with you that in May I will be travelling back to North Carolina to participate in the 6th Annual Rainbow of Heroes Walk which benefits the Duke Pediatric Bone Marrow Transplant Family Support Program.
The Family Support Program, in my opinion, is as instrumental to the childs well being as the medical care itself.
It is a vollunteer based program which offers an array of resources and services to families starting when they arrive in North Carolina for the pre-transplant workup and continuing sometimes over a year later when the patient and family return home.
The Rainbow of Heroes Walk commemorates and celebrates all Duke Pediatric Bone Marrow Transplant patients. Balloons with the name of a transplanted child are carried by all participants. I am honored to be able to attend and carry Bailey's balloon.
Also honoring the incredible strength and courage of these amazing children is the Rainbow of Heroes Wall. Here names, stories, and photographs of transplanted patients are shared by all. I am thrilled to bring Bailey's photo and story there personally.
While staying in town for the fund raiser I also wish to spend some time with families Bailey and I had met on the unit who are still there, fighting their brave fight, some still in-patient, some out-patient living in nearby apartments.
If you would care to sponsor me in taking a walk for a hero please send checks to:
PO Box 1312
Conway, NH
03818
Please make checks payable to: DUKE UNIVERSITY and write in the memo space: 06RH and let me know if you would like a tax receipt.
Every contribution makes a difference to this program and these truly deserving families, whatever the ammount.
For more information please feel free to email me at:
bcubed@localnet.com
With appreciation,
Christine Robinson
Monday, March 13, 2006 6:07 AM CST
Please visit Micah's web site:
http://www.caringbridge.org/al/micah/index.htm
He is still on the PICU and his family can use our support.
Every day they live a life few of us can imagine.
Christine
Wednesday, February 15, 2006 7:04 AM CST
Sunday, February 5, 2006 6:58 AM CST
Hands waving hello
slapping high-fives,
cold hands and warm hands
hands waving goodbye;
People shaking hands
mitten covered, too,
clean hands and dirty hands
holding hands with you;
Hands full of love
that wipe away tears,
young hands and old hands
bring us good cheer;
My hands are full
as my heart is, too,
weak hands and strong hands
help us to get through.
Sunday, January 8, 2006 5:57 AM CST
Good morning.....
When I was staying with Bailey on the transplant unit I had the chance to meet many other families, 15 of them, to be exact. We would chat for a moment in the hall as we passed one another, or share test results in our community kitchen area, and somehow we never learned who did what for a living or where they were from, their political views or religious preference.... we only had time to learn the important stuff.... what was going on with their child. We knew so little about one another, yet we understood each other so well.
While on the unit I met Micah's family. We met and shared just a few words, yet I felt I knew the whole family intensely. You see, Micah was diagnosed with Adrenoleukodystrophy. His mom, Susan, barely needed to utter a word, I could understand her.
Unfortunately this morning I find I am understanding more and more as the staff at Duke announce Micah's Liver and Kidney's are failing.
Please visit Micah's web site at:
http://www.caringbridge.org/al/micah/index.htm
Micah and his family can use all the support, caring and prayers we can send their way, especially prayers for strength.
Christine
Monday, January 2, 2006 8:09 AM CST
It is not enough to take steps which may someday lead to a goal; each step must be itself a goal and a step likewise.
-Goethe
Sunday, December 25, 2005 4:21 AM CST
Typical.
I'm still the first one awake on Christmas morning. Now I have to sit patiently and wait for the sleepy Brandon and Britta to wake up and start the excitement.
Judging from the gifts under the tree, Santa went overboard, and we thank him for that, so much!!
Thank you one thousand times to the Emergency Department at Memorial Hospital in North Conway for adopting our family over Christmas. The gifts are so appreciated, and especially the thought put behind them.
I had an early Christmas gift from my sister-in-law, Shella, and visited her in New York for a couple of days. It was an exciting trip, but of course I wouldn't want to live there.
This fabulous restaurant in Soho called PUBLIC where Shella and her boyfriend, Tamer, work did the most thoughtful thing and raised funds for our family. The waitstaff actually donated a portion of their tips on busy nights. I got to meet several of these people before I knew about the donation (very sneaky, guys!).
I know how hard you work and appreciate your kindness so much!
Continued thanks to all who contribute to Bailey's medical fund and The Bailey Bear Foundation. We are so overwhelmed by the help from friends and strangers alike.
We have had many visits with friends recently, and have enjoyed our time together so much. Thanks for all of the words of encouragement, the support, and for occasionally making me laugh.
I am wishing you each a Merry, sparkly, laughter-filled, gift-wrap covered, sticky-faced, bright and shiny Christmas!
AHA! Brandon is awake! On with the excitement!
With love, love, love-
Christine Robinson
Sunday, December 11, 2005 1:51 PM CST
It's a pretty day here, the sun is shining, the sky is blue, and the snow on the ground is sparkling!
I wish my mood were more shiny and sparkly and less blue, but I'll get there.
Continued thanks to our community. People have generously continued to donate money to Bailey's Medical Fund, and we are so grateful, especially as the bills start to arrive. It's been overwhelming, and your generosity has lessened that burden so much.
We are also thankful to the people donating money and bears to the Bailey Bear Foundation. Brandon and I are excited at the possibility of having bears ready for children to hold in our local hospital by Christmas.
We also decided our very first shipment of bears would go to 16 special children on the Pediatric Bone Marrow Transplant Unit in North Carolina.
Thank you to everyone for making the days a bit happier for these children here in New Hampshire and in North Carolina.
The last morning of Bailey's life has been on my mind so much lately.
Part of me knew for some time we would be saying goodbye to Bailey, so in a way I was prepared.
I spent the morning calmly organizing Bailey's transfer from the Pediatric Intensive Care Unit back to our room on the Pediatric Bone Marrow Transplant Unit, arranging where Brandon and Britta would be waiting, who would be waiting with them, it was all so strange, as though I were a wedding planner, scurrying from unit to unit, except this was no celebration.
I had one moment of anger, bigger than anything I've ever felt before, I was so broken. In the anteroom to Bailey's room on the PICU I ripped my "Grow Cells Grow" bracelet off my wrist and threw it in the trash, took a moment to compose myself, and then went back to orchestrating Bailey's farewell.
Later, here at home, I have many times wished I had held on to my bracelet! There are some very important children, still working hard in North Carolina, some still on the unit, some now outpatient, I wish to show my support for.
This morning I began unpacking some of Bailey's belongings from North Carolina, and what greeted me at the top of one box? Bailey's "Grow Cells Grow" bracelet!!
This time it will have to wear out and fall from my wrist!!
Thank you to the wonderful families still at Duke who take the time to email me. I know how busy your days are and feel so blessed that you would spend a moment of your free time supporting my family and I.
I'm chanting, singing, cheering for each of the children "Grow Cells Grow! Grow Cells Grow! Grow Cells Grow!"
With hope for more shiny, sparkly days.....
Christine
Monday, December 5, 2005 5:39 AM CST
Good morning.
The ground is partially covered with some bright, glittery snow, and I'm hoping it stays.
It has been quite a week around here.
As we are able, Todd and I are catching up, sharing stories of while we were apart.
Thank you to everyone who kept my little family fed while I was away!! I know that was a huge help to Todd as he suddenly found himself a single-dad. We appreciate that help so much!
My friends have been doing so much, and your time is so appreciated. The phone calls, the visits, they are all helping.
Yesterday I took Britta to the Partners In Health ornament making party. What a bitter-sweet day. Tin Mountain comes to help make lovely holiday decorations with natures found items.
I went last year with Bailey and Britta, and was happy to see some of the same ornaments being made again, this year.
Being around so many children was fun for me! I got to encourage many kids to make BIG messes!
A very special child gave me the wreath he had spent the majority of his time making! It is happily hanging over our kitchen table, fragrant and beautiful, reminding me there should be a tree nearby to keep it company... so I thank you, thank you, thank you. I'm encouraged, too.
Christine
Sunday, November 27, 2005 7:06 PM CST
It's hard to believe that tomorrow will be one week since Bailey's funeral, and what a beautiful ceremony it was.
That little guy surely was giggling away in Heaven at the sight of his four Fire Fighter pal bearers all in their Class A uniforms, and the Fire Department Honor Guard standing at the church entry. He was proud of his mom and dads involvement with fire and rescue, proud of all department members, really understanding the commitment, and just dreamed of growing to be a firefighter himself, one day, so what a way to honor our little boy!! Thank you a million times for loving him back so well!!
'A Wonderful World' was sung by the New Vocal Collective choral group and they did a beautiful job. That song spoke to me and I know in my heart it is precisely how Bailey saw the world. Here are the lyrics, in case you do not recall:
I see trees of green, red roses too
I see them bloom for me and you
And I think to myself, what a wonderful world
I see skies of blue and clouds of white
The bright blessed day, the dark sacred night
And I think to myself, what a wonderful world
The colours of the rainbow, so pretty in the sky
Are also on the faces of people going by
I see friends shakin' hands, sayin' "How do you do?"
They're really saying "I love you"
I hear babies cryin', I watch them grow
They'll learn much more than I'll ever know
And I think to myself, what a wonderful world
Yes, I think to myself, what a wonderful world
I heard the words Pastor Sue Davidson and Dr. Frank Hubbell spoke at the ceremony, and they were spoken so well. I was comforted.
At the reception I really enjoyed hearing stories of Bailey, seeing friends I had not spoken with in some time, and appreciated the number of people in attendance, all important to Bailey in some way. I am very glad to have seen some special children as well, and thankful they gave their hugs to me so freely!
I wish I could say the days get easier for us here, but on the contrary, each day is harder than the one before. But we remind ourselves, when we're overwhelmed, not to let the grief steal our days!! So we put a Christmas tree in the yard, decorate it for the birds, hang some garland and watch the snow flakes fall.... not just noticing snow flakes falling.... noting how each flake is a beautiful sculpture of ice. Looking closely to see how unique and precious they each are.
I may not do another thing but spend the whole winter examining snow flakes and feeding the birds with Brandon and Britta.... but I won't feel a moment was lost if I do.
Missing my friends in North Carolina and thankful to be home with my friends in New Hampshire.... Christine
Wednesday, November 23, 2005 6:58 AM CST
A special message to our friends in North Carolina.... doctors, nurses, staff and families.....
It's snowing!!!!!
Love- Christine
Friday, November 18, 2005 5:20 AM CST
This morning Todd and I wake up ready to start our journey home.
Bailey was brought home by Chief Larry Wade, Assistant Chief Keith Noble, and FF/Paramedic Matt Leavitt in the Chief's Vehicle and what a grand way for him to return to Conway, New Hampshire. I'm forever grateful to those big lugs!
On November 21, Monday at 2:00 PM we will have Baileys funeral service at the First Church of Christ in North Conway. Immediately following we will gather at the Conway Village Fire Department for a reception where we will all have a chance to share our happy memories of Bailey.
I so look forward to seeing our little house, the town, all of our friends, and a very special group of second graders.
Love, love, love,
Christine Robinson
Tuesday, November 15, 2005 5:08 PM CST
Hi friends.
Thank you for all the prayers and energy coming our way. We feel the strength you're sending us.
As it turns out ALD would not steal my childs life. I knew it wouldn't! We are the ald-stroyers!!!
However no one could fight the most severe case of Veno-Occlusive Disease the doctors here had ever seen.
Bailey felt no fear, no pain, no discomfort as I held him in my arms, with his Dad, Brandon and Britta in his room back on the Bone Marrow transplant Unit. He had made his little room a lovely home and it was only right for him to be here with his family.
We listened to a selection of Bach, Brahms and Mendelssohn.... in fact THE very music to which Bailey was born, as I held him and he left my arms to be held by God.
I read all the children the book I had written for them, and indeed the children were together again, weren't they?
The Family Support, Child Life, Doctors and Nurses made sure we were able to help Bailey leave us just as I wished, which I have no doubt was just as Bailey wished.
He never will feel the devastating effects of ALD, he got the MOST out of each and every day, and he will always be with each of us who were touched by his life.
With love and gratitude,
Christine Robinson
Tuesday, November 15, 2005 5:25 AM CST
Day +12
Good morning!
Brandon and Britta arrived with Gramma and Aunt Shella just fine. Thank you so much to Nina and Chrisberes (one word) for getting them out of Conway, and to Vikki for managing them, again, at the last minute. I know that Britta is a real handful!
Last night I was able to hug and be hugged by Brandon and Britta for the first time in 60 days! Brandon picked me right up off the ground, as I predicted he would, and Britta cuddled with me for hours.
I love Brandon's hair. Don't tell him, but as a teenager I expressed myself similarly. Britta has not changed a bit in my eyes.
This morning I relieved Todd at the hospital around 4:00 AM.
Bailey is doing all he can, yet this is a very big thing to fight. Your prayers are working, so please keep up the good work.
Over the night Bailey's nurse, Missy, cared for him. Before I left last night she allowed me to assist with his mouth and eye care, and cleaning up from the chest tap, belly tap. The area on his belly is draining, that fluid really wants to be released, but it's just not happening yet.
At around 3:00 this morning a vas-cath was placed in preparation for CVVHD, which is a specific type of Dialisis. This machine will be connected to the catheter and continuously draw blood from Bailey's body, filter the toxins, and return it to Bailey. This in itself will not halt the VOD, however may buy more time.
Bailey did get to the right number to qualify fot the drug which might assist him, however his oxygenation is now an issue. The use of the CVVHD may help get his oxygenation to a level which will qualify him for use of the drug.... the name escapes me at the moment.
After having the vas-cath placed, this morning Missy and I gave Bailey a sponge bath, combed his hair (what baby fine strands he has left) and cleaned up bandages. It felt so good to be actively caring for my son. Moving to the PICU has been especially trying for me since you basically sit there doing nothing. Of course I read, chat, sing (hahaha) but for three weeks I had been actively providing care. I'm so grateful Missy allowed me to participate in Bailey's care. The simple tasks made me feel useful to my child again, and I needed that.
Thank you to everyone for all of your love and support, which is really lifting us up, helping us to move forward.
I'm back to be with Bailey now until they kick me out for rounds.
Chris Robinson
Monday, November 14, 2005 5:13 PM CST
2nd update for today.
Bailey is holding his own. Not much new to report from this morning's update. Not much improvement, but no worsening at all. They are drawing that fluid from his chest and abdomen now as I type this, so hopefully there will be a good amount of improvement here over the next 2 hours or so. Chris is taking nap in preparation for the other two children to arrive this evening, as long as they make their plane trip out of Manchester! So in this case we will assume no news is good news :) Keep the faith, and prayers coming, we definitely feel they are working. I'll try to update again later tonight, if not tomorrow. Good night, and God bless.
Todd
Monday, November 14, 2005 11:00 AM CST
This is such a roller coaster that we are on. This morning we were preparing to remove life support for Bailey and cuddle with him as the rest of our family is traveling down to be with him. After the grandrounds this morning there is some new life and lots of postive energy flowing. The summary of it all is that due to the chemotherapy, specifically the busulfan, has damaged his blood vessels resulting in venous occlusion disorder. This slows down or depletes the ability of the blood to flow to his major organs, mainly his liver and kidneys. They are going to counteract this with some new drugs from Europe, and dialysis. This will help remove the fluids and toxins and hopefully fix the pleural effusion in his chest. If not they will drain that later today or tomorrow if no improvement with the dialysis. They are changing his ventilator to one that will work better with this effusion. The doctors are still very hopeful, and state that this sort of thing has happened before, and the kids still walk right out of here. So again, Bailey is on the bench, but not out of the game. We are working hard together with his team, and are still full throttles forwards. Brandon and Britta with my sister and mother are flying down tonight to be with us, "just in case". So as you can see it is amazing what a couple of hours can do around this incredible place. Thank you all for your positive energy and thoughts. Chris and I are exhausted, but energized with all of this new information. I must say it was weird to hug/cuddle next to my wife last night for the first time in almost 2 1/2 months. Thank you all, and I'll keep posting as soon as there is anything new to report. It is a wait and see right now when these things work and we get the results. Talk more later today, or tomorrow.
Love,
Todd and Chris
Sunday, November 13, 2005 7:39 PM CST
Second or third update for today, sorry I can't keep track. I have now be up and going for >43 hours, and am starting to feel the toll, but this is not about me, it is about our little ALDestroyer, aka Harry Potter, oops, I mean Bailey. It has been a rough day for Bailey today. He has that pleural effusion that I spoke of earlier, it is quite large in size in the Right lung. He is bleeding in his stomach, probably from an ulcer, retaining lots of fluid in his abdomen as his intestines and kidneys are apparently on strike at the moment due to the inflammation being caused by the side effects from the chemo, and/or the graft vs host disease. With the pleural effusion and large abdomen have been making breathing tough for our little trooper. This is the major reason for why he was transfered around 6pm to the Pediatric Intensive Care Unit which is just around the corner from the Bone Marrow Unit. Bailey has been intubated and placed on a ventilator. This means the doctors are breathing for him for those of you not medically oriented. He has been very acidotic, despite his breathing compensations. They are placing an arterial line to monitor all of this now. The decision right now is to hold on the chest tube placement to drain the effusion due to possible infection risks. He is doing much better just being intubated at the moment so this is a wait and see as we are all waiting for the megadoses of steroids and diuretics to kick in, and the umbilical cells to stop monkeying around and get to work growing in their new home instead of trying to mess it up. As one of the doctors described that this is not completely unusual as these cells are the new kids on the block and are playing tough, but the host nearly always is the bigger and stronger of the two, it was just caught by surprise by the new kid's sucker punch.
I think that about sums it up for tonight. Bailey is resting, doing okay on the ventilator, pretty well drugged up right now so his body can focus on the fight, and not on breathing. We will update again as soon as we have any information, probably multiple times each day, but we will take each day as they come. Please keep Bailey in your thoughts and prayers. The next 24 to 48 hours are the most critical, and we need to make sure he emerges from this dark forest, strong and healthy and with no additional damage. God bless.
Todd and Christine
ps, sorry for the typos and incorrect speech, I am too tired to correct, and my corrections seem to only make it worse, again sorry.
Sunday, November 13, 2005 11:08 AM CST
Well, I am here again in NC. Bailey is pretty swollen with fluids at the moment as his graft battles against him. I spoke at length with his dr. and Chris. Chris' and now the family motto is Bailey is "On the bench, but not out of the game." We are all quite positive that this is just a stumbling block as the new cells are adjusting to their new home. He is on some large doses of steroids to get the inflammation of his intestines under control, and several medications to kick the kidneys into better working order. They are limiting all other fluid intake until this is better controlled. The next 24-48 hours are the most critical as these drugs will either work, and his new cells settle in, or not. Again positive thoughts from everyone is what we need right now. On the bench, but not out. Several more cards to be played in this round. He may need to go to the Pediactric Intensive Care Unit for a short while if his hard breathing tires him out too much. But otherwise he is as tough as usual, fighting hard to remain strong and healthy.
Chris' spirits are good, positive energy is the only energy allowed in the room as we now support each other even more. I will post another update as things allow. god bless to everyone, and keep praying for Bailey's new cells to settle down, and do their job of growing.
Love,
Todd
Saturday, November 12, 2005 9:19 PM CST
Update to earlier post.
Report from Chris and Doctors. Bailey is "worsening". He does have some fluid next to the lung, a pleural effusion, and is accumlating fluid in his belly. As Chris describes it looks like a malnourished child belly. He is not very comfortable this evening with all of this fluid. They are trying constant diuretic drugs, and some additional steroids. They feel it is either an infection, although unlikely with all of the precautions, or it is Graft vs. Host disease, GVHD. This is when the graft actually attacks Bailey's body as it is an immune system and sees Bailey body as foreign to it. They are now attempting to suppress this type of response. I will attempt to write more tomorrow, but I am now going to work on getting myself down to be with Chris and Bailey. Please hold us all in your thoughts and prayers. We love all of you for your support through these tough times.
Love,
Todd
Saturday, November 12, 2005 5:32 PM CST
Hello everyone...
Chris just called me, and we are looking to everyone for some help!! Bailey is retaining too much fluid and they are having trouble removing the fluid from him. He has increasingly become more swollen throughout the day today, and the doctors are raising some small alarms at the moment. We need all of your prayers and hopes to focus on Bailey right now. Literally the next few hours are very important, and will have a significant impact on what is coming down the pike. I will post again later tonight once I know more. I love you all, and we are in need of your help, please reach out to all your prayer groups and pray hard right now. Thank you. I'll be back as I go and pray, and hold by littlest one and Brandon close to my heart at this time.
With love,
Todd
Wednesday, November 9, 2005 0:07 AM CST
Wow, I'm typing! It's been so long since I've had access to a computer, I can hardly remember my old typing skills!
I have missed having a computer so much! Now I have one in our room, thanks to uncle Chad.
Bailey lies fast asleep at this time. He is resting very well for a little body with so much going on inside.
On the outside he looks like the same old Bailey, except that in the last day he has lost almost all of his hair. He began losing it while suffering already with a terrible rash common for these children, and a horrible reaction to medication. The hair started falling out in big tufts.
When he first noticed this he said "I'm sorry mom, I gave myself a bad haircut" as he awoke from his deep morphine sleep.
Later he noticed he could actually pull his own hair right out in huge clumps and said "Look mom, I'm stronger, I never used to be able to pull my own hair out."
So, Bailey has lost his hair, Todd is growing extra hair on his face, I am told Brandon's hair is now red, and mine is sure to be much grayer by the time we are through.
Thanks so much to those of you who made it possible for Todd to come to visit. I think it was great for Bailey!! He smiled so brightly when daddy walked into the room, and it was his first smile of the day.
I did not know how fatigued I was until I found myself able to hand the responsibility over to Todd. I really needed to recharge, and I did. I am grateful.
I miss New Hampshire! I miss Autumn! I hope someone in Conway will please rake up a big pile of leaves, grab their kids, and go jump in them for me!!
It's too late to get into the medical stuff tonight (this morning) so I will start on some explanations tomorrow, but please be assured Bailey is doing a very wonderful job. Although he is having some tough stuff to deal with, none of it is out of the ordinary considering his situation, and he is handling it all so very well. He is one tough kid!
Christine Robinson
Tuesday, November 8, 2005 6:33 AM CST
Good Morning.
Well I arrived home back in NH last night, and got a good night's sleep. Christine is my hero. I spent 3 days taking care of Bailey, and not completely by myself, and all I can say is WOW. It was very tough. Bailey is very demanding to take care of, the side effects of the medications almost make him manic in that it is one task after another to keep him happy, and he just rattles them off so he is on #4, while you are still working on #1, then he is upset that you haven't gotten to #2 yet. Very hard to reason with him as those "logic" circuits are just not working real well right now.
Of course as I write this, the channel 9 news announces a plane crash at the Manchester Airport where I flew in and out of for this adventure.
Bailey is doing okay, he is right where he supposed to be in the recovery area as the cells start to grow. Having to deal with things we never think of, or have experience with. I will try to add more later. Good news is that Chris will be taking the helm of this back as she is now back online, and so you will be recieveing more first hand reports. I hope all is well with everyone else. Thank you for the support and friendships through all of this.
Todd
Saturday, November 5, 2005 8:28 AM CST
Hello to everyone from sunny North Caroline. Yes, this is still Todd writing. On Thursday after some very rough days for Chris and Bailey my coworkers at the Saco River Medical Group said enough is enough and kicked me out on an afternoon flight to NC to assist Chris and give her some much needed battery recharging time. My flights were uneventful, although very full. I arrived and went straight to the hospital. My Bailey was awake waiting for me. We laughed and hugged for quite awhile. Chris gave me a very extensive tour and insturctions then she was relieved of command and sentenced overnight to the hotel across the street. The next morning she looked like a new person!! It is now Saturday, and time is moving so quickly, Bailey is already Day +2 from the transplant and gaining more energy each day. Still a lot of vomiting and diarrhea, but that may be starting to lessen some. I will try to post some pictures once I get back. A big thank you to my brother Chad as his computer arrived, and now Chris will be able to get back into her emails, and writing this log for everyone. Keep the faith, and We'll keep you all informed as Bailey's new cells grow and grow.
Todd
Thursday, November 3, 2005 4:48 AM CST
Day 0
Today is the day. Or T-Day among my coworkers. Chris is very nervous watching what has been happening to Bailey through this process. We all hope and pray that it is all just drug effects of the chemo and anti-rejection medications and our Bailey will return to us soon. All systems are go, please keep Bailey and Chris in your thoughts today as it really does begin a new phase in his life. Thank you.
Todd
Wednesday, November 2, 2005 5:43 AM CST
WOW!, INCREDIBLE!, UNBELIEVABLE! and these words do not do justice to the outpouring of love and support for Bailey that was shown by our friends in the Mount Washington Valley and beyond. Flatbread Pizza was overwhelmed all day by orders, and the silent auction was a huge success with incredible items from all over the area from gift certicates to restaurants, to stores, a bicycle, blankets, a printer, Red Sox tickets... the list goes on. Here it is the next morning and I am still teary from the thoughts of last night with everybody there. The friendly faces, the strangers, the people sharing intimate details of their own experiences with Bone Marrow Transplants both at Duke and elsewhere. The many hugs and kisses to be passed to Bailey and Chris as they continue to fight so hard in North Carolina to "be strong and healthy". My words do not do the incredible event organized by a gentleman that I will forever be in debt to, Dr. Rich Laracy. He did an incredible job, it was stupendous!!!!
All of those positive thoughts, keep sending them to Chris. Times are tough, but she is holding it together. Bailey is doing okay, they now feel that his lethargy and exhaustion and low O2 sats are all side effects of the anti-rejection medication. Apparently this drug causes a huge variety of side effects in different people, and there is no way to predict the reactions. His last dose of chemo is this morning, and he will have the afternoon off, with very minimal medications in preparation to the Transplant TOMORROW!! I can't believe it is happening already. I can't wait to see and hold my buddy again soon.
Hopefully, by a wonderful donation by my brother, Chris will be back online this weekend. She can't wait to reach out everyone and share her battles first hand, versus my interpretation of them. As we all know, I am just a man, and subject to my vagaries of "That is not what I said." But I am trying my best. Hope all is well with everyone. Again thank you to all that came out last night for Bailey. It was an incredible experience.
Love,
Todd
Tuesday, November 1, 2005 7:47 AM CST
Day -2
I apologize for the delay in writing, it has been a very crazy time. Good news and bad news with Bailey. He has been responding so well to the chemo therapy that they have advanced his transplant day to Thursday!!!! Unfortunately he is not feeling very well right now. His breathing is very shallow, his Oxygen saturations are only in the 80's where they should be high 90's. They are concerned about fluid overload so they are giving him medications for that, and are doing chest xrays to check his lungs. He was Harry Potter for Halloween, but was too ill to do anything, they pulled him around in a wagon around the floor for the "parade".
The rest of us are all doing okay as we concentrate on the day to day living, and assisting them whenever possible. Big fund raiser tonight at Flatbread Pizza in North Conway if anybody is available. There will also be about 20 items up for the silent auction donated by local buisnesses. It should be a good time. Well I've got to get back to work, I'll try to get back on the bandwagon here of keeping everyone up to date, again I am sorry.
Todd
Friday, October 28, 2005 8:56 AM CDT
Day -15
I spoke with Chris last night and she was the most upbeat I have heard her in a very long time. Bailey is doing awesome through the chemo so far. He complains only of some dizziness, and Chris has noticed that some of his hair is falling out, but Bailey has not noticed that yet. The doctors are saying that he should continue to due well now at this point as most of the chemo side effects are noticed at the beginning of treatments.
Bailey really wanted to be Harry Potter for Halloween. So after many trials/failures and exasperation, his magic wand arrived at Duke yesterday, and his robe should be arriving tomorrow. He is very excited by the wand.
All is okay now on this front. Brandon is finally feeling better after being struck by a virus that laid him up for 3 days with terrible headaches. And of course Britta is just awesome the way she just rolls with the changing schedules and different people taking care of her as my schedule keeps changing to keep us all afloat. Talk more to you all later.
Todd
Wednesday, October 26, 2005 5:56 AM CDT
Day -17
Bailey had a good first day of Chemo yesterday. I finally spoke to Chris at 1030 last night about thier day. It went well, they are both exhausted. Bailey is learning to not sleep which is making things very difficult for Chris who just can't seem to get a break at the moment. She sounds in good spirits but very tired. They continue the same today. Not much else this morning except for the snow that seemed to fall everywhere else but our front yard. At least we don't have to shovel yet. Have a good day.
Monday, October 24, 2005 9:24 PM CDT
Today has been the day of adventures. Chris and Bailey started this morning at 0500 waking up, and getting ready to be at the hospital for 630. Bailey went to the operating room and had only one central line place with 3 lumens on it. The three lumens means they can deliver meds, take blood samples etc. all with out having to poke him with extra needles. This was supposed to be an outpatient procedure and they were to return to the apartment after waking up from the anesthesia. Chris accompanied Bailey right into the OR for the procedure, then left to go get some food. During this time she was told of a change in plans. Duke had a discharge and Bailey would be admitted this afternoon, instead of waiting an additional entire week. This was great news, but caused slight stress as Chris had nothing packed, and nothing prepared for admission today, as we had adjusted everything to be next week, but we are all quickly learning to "roll with it". So the afternoon was spent packing and preparing.
Chris called tonight after getting admitted, and the process has begun... They drew lots of blood to get him started, and have started the medications in preparation for his first chemotherapy at 0400 tomorrow morning. That's right, 0400 tomorrow. Their schedules are now going to be very different. They draw blood every morning at 0200, then chemo at 0400, that way they have all day with the full staff to deal with any issues. Bailey will probably get his first blood transfusion this evening to make sure he is as healthy as possible due to all the blood samples and other things that they have been doing. Due to this crazy scheduling please do not call Chris and Bailey, they will call people as time permits, but as you can easily see the schedule will be tough for us to keep track of, and they will be grabbing sleep as they can.
Their new address is:
Chris and/or Bailey Robinson
Duke University Medical Center
Room 5216
Durham, NC 27710
All item being sent to them must be in original packaging, and must be easy to clean. These are strictly enforced by the hospital staff for the health of all the patients. I will have more complete information soon.
As it is now 1040pm and I am exhausted mentally and physically with so much going on, I am heading to bed. Thank you all for the positive thoughts, it is a great feeling to finally have the clock ticking towards the transplant. We are now at Day -18. Good night.
Todd
Saturday, October 22, 2005 7:25 AM CDT
Hello everyone,
Bailey has made it through his preop physicals yesterday. He got a clean bill of health. He will be going to the hospital in an outpatient setting on Monday for the placement of the central IV lines. Chris received extensive training in their care. If you are following that so far you have noticed I didn't say he was being admitted. Unfortunately there won't be any kids being discharged this weekend making room for Bailey to be admitted. Apparently there were 3 possibilities, but there are still too ill to be released from the hospital unit. So Chris and Bailey will now be staying at the apartment again for another week. The new date is next monday, the 31st. So this has thrown a very large monkey wrench in the plans, but of course we'll just drop back and punt and do the best we can, as usual.
Those of us in NH are doing okay. Mt Washington is beautiful with the over 3' of snow they have received. I am currently taking my paramedic refresher, and the other 2 kids are doing well. Brandon's grades on the progress report are awesome, and Britta is adjusting quite well to the hectic schedules and going with new people. Hope all is well with everybody else, and we'll talk to you soon.
-Todd
Wednesday, October 19, 2005 5:10 AM CDT
Good morning,
Not much to report today. Chris and Bailey are hanging loose and relaxing as much as possible in preparation for Monday's admission. Unfortunately while Chris was playing with Bailey just outside the laundromat yesterday, somebody steal her jeans right out of the washer!! Incredible!! We had to buy those jeans just prior to the trip due to all the weight she had lost during the Lorenzo's Oil diet and the wonderful STRESS. AGGGGHHHHH. Okay that is off my chest now. Not really anything else to report. I'll post as soon as there is anything new. Talk to all soon.
Todd
Monday, October 17, 2005 5:29 AM CDT
Good Morning,
Chris and Bailey are all settled into their apartment for the next week. They have to go to the hospital only twice right now, once to drop off some samples, and the second will be on Friday for his Pre-op physical in getting ready to be admitted on the 24th. The apartment seems to be working for them, the biggest obstacle is that she has really poor cell phone reception so our conversations have been very frustrating, (Can u hear me now?). She is looking into a hard line telephone this morning. We don't have an address yet, again hopefully today. Not much on the NH front either, I spent the weekend at an EMS conference so I can keep my license, and the kids played all weekend as they are supposed to. Thank you all for keeping us in your thoughts, they have been very helpful. Bye for now,
Todd
Friday, October 14, 2005 6:41 AM CDT
Good morning,
Sorry that I was unable to get back to you all yesterday. The final answer is that Bailey will be admitted on 10/24 for the bone marrow process to really begin. So Chris and Bailey will be moving today to the Forrest apartments so she will have a full kitchen to assist with the food bill problems. They will just be kickin' it back and relaxing at this point until the admission date, there are no further tests to be done. Sorry to be so brief but I am litterally typing as Britta is climbing on me, and I am trying to get out the door for a conference today. Talk more later.
Todd
Thursday, October 13, 2005 5:20 AM CDT
Well, like everything else in the Robinson world, we get good news, but there is always some sort of hitch. The insurance company finally came back yesterday afternoon with the APPROVAL!! :). Thank goodness, but unfortunately it came 40 minutes too late for the deadline of 3pm yesterday for the surgery schedule and for the umbilical cord blood group. Duke is working on this and hopefully we will have a final answer today that they were able to work everything out for the tentative admit date of the 17th, if not it will be delayed until at least the 22nd. I was hoping to post only the positive news yesterday, but I spent all morning harassing the insurance company and Medicaid to get an approval done by the deadline, we just plain ol' fell short on this one. Everything else is okay, Brandon celebrates his 15th birthday today!! Oh my... Butthat is all the news really from this end for now, as soon as I have more, I'll post again.
Todd
Wednesday, October 12, 2005 5:21 AM CDT
Hello everyone,
Please everyone help send positive thoughts and prayers this morning. We need to have an answer from the insurance company by 10am this am or it will delay the ability to admit Bailey for another week. Meaning we bought another week in a hotel room where Chris and Bailey are already completely bored out of their minds. The deadline has to due with the surgery schedule as that is the first step once admitted. I will post later today as soon as I hear anything, just reaching out to get as much help as possible. Thank you all.
Todd
Monday, October 10, 2005 2:38 PM CDT
Hello,
I know, long time no write. Well there hasn't been anything really to report. Bailey got a stomach bug over the weekend with some vomiting, but that has since cleared up and they are just hanging out trying not get too bored as we are still waiting for an answer from the insurance company. Hopefully we will have that tomorrow so we can start moving forward again.
Brandon, Britta and I had a great trip to the museum of science in Boston with the Grandparents. It was quite exciting, and both of the kids greatly enjoyed the shows and exhibits. Well that is all the news for now. Talk more later as soon as we have some news.
Todd
Friday, October 7, 2005 7:47 AM CDT
Hello everyone,
Chris and Bailey are just hanging out now, just waiting for the insurance approval. Nothing else to do now... Bailey had his hearing checked, and everything is A Okay in that department. Brandon, Britta and I are off for our adventure with Grandma and Grandpa. I'll update over the weekend if there is any news. Have a great weekend.
Todd
Thursday, October 6, 2005 5:47 AM CDT
Hello, not much to report today, status quo. Hopefully we will have an answer from the insurance folks today so that Bailey could be admitted this weekend, otherwise it will most likely mean a week's delay in NC with nothing to do, and currently no place to move to. We'll see... Britta has decided to start staying up and partying, then being an early riser, so this is quite difficult to accomplish right now. I'll right more as soon as I have any better news.
Todd
Wednesday, October 5, 2005 5:47 AM CDT
Yesterday was Chris' day for education. She was in class from 7:45 until nearly 7:00 pm that night on learning all of the medications, side effects, the whole roadmap and plan for Bailey's care. They have the day off today. She will be actively studying for the quiz on central line care and drugs tomorrow. Bailey has another wiggly tooth and they want to remove that prior to going on the unit due to some of the side effects of medications with mouth sores, as well as the chance of mouth infections.
Just a quick note today. Things are real busy up here in NH as usual, but we are all getting into this crazy routine we have. Thanks to all for your thoughts. Talk to you all soon.
Todd
Tuesday, October 4, 2005 5:03 AM CDT
Hello,
Well after all that great news yesterday there isn't much to report. The insurance company is still working on the approval, they claim they only found out about this last week, which is of course very untrue. So we are jumping through their hoops, barking at the moon, and hopefully it will all be approved later this week.
Brandon had a nice weekend camping, and going to the fair. He is giving me heart attacks with his now red hair, and leather, with metal studded choker necklace. I know it is just a kid thing, but lordy help me.
Britta did awesome over the weekend being bounced around to different people so I could keep working. She is just an incredible kid that has become quite tolerant of all the changes in her life.
Chris and Bailey don't have much to report, they are off to a see dentist today for their evaluation. The chemo can cause lots of mouth problems. So off we go on another crazy day here in the Robinson households.
Todd
Monday, October 3, 2005 1:24 PM CDT
WE HAVE A MATCH!!!!! Everything is all set to move forward, pending of course insurance approval. I am working feverishly on that to get that ball rolling in the right direction. I'll update you more as soon as I have it, but I know many people were waiting on that piece of information. Talk soon.
Todd
Friday, September 30, 2005 7:57 PM CDT
Well Bailey made it through his tough day of testing today without any problems. Chris and Bailey took a tour of the Bone Marrow Unit, they had to get all dressed up in the gowns, and shoe covers to see the unit. We were told that they now have a few good matches, and are working on figuring out which will be the best one for Bailey!!! Currently they will have more testing on Monday and Tuesday with probable admission during the end of the week. Chris and Bailey traveled to a Super Target this afternoon to purchase some supplies that he will need like sheets and linens, (Chris got a super deal). I took Britta out to do some winter clothes shopping, she had only 2 pairs of jeans, and 1 long sleeve shirt so at least she is slightly more prepared now for the freezing weather that we are starting to get here in the mountains. They have the weekend off from any testing and are going to take it easy as much as they can in preparation for the busy week ahead. Bailey is now off his Extreme low fat diet with the Lorenzo's Oil, his first request was for Pepperoni Pizza. They ordered a large, and Chris only had 2 pieces. He ate the rest of the pie. I guess that is all for now. I'm working all weekend at the firehouse, I'll update if anything important happens, if not I'll try again on Monday. Have a great weekend.
Todd
Friday, September 30, 2005 5:24 AM CDT
Well after that whirlwind yesterday, it appears the process is moving forward. Bailey is scheduled today for EKG, echocardiograms and pulmonary function testing in preparation for admission to the floor. The process is moving forward... Everybody's spirits are doing well right now, just waiting to cross the final hurdle of a confirmatory match so we know what we are doing. The team seems quite confident that Bailey will be admitted by the end of next week, or the week after at the latest. Hard to think about them truly being gone for 5 more months after the crazy past 2 weeks. Chris is quite homesick, she very much misses her littlest Britta, and the biggest Brandon. They certainly do miss her as well. Britta seems to be finally starting to get over her ear infection. Well it's off to get ready for work now, bye everyone, thanks for all of the positive thoughts, it really does make a big difference.
Todd
Thursday, September 29, 2005 1:38 PM CDT
Sorry for the delay, internet problems at the house. I am writing right now at work while we have a lull in patients, with crazy rainfall, and 40mph wind gusts. I have just recently gotten off the phone with Chris, and the head Dr. of Duke for the Bone Marrow Transplant team. As most of you know that Bailey as been progressing, well they have confirmed that, and feel that right now is the best time to transplant for Bailey, and not to delay at all, even just a few months. They hope to have a confirmed good match donor early next week with possible admission for Bailey late next week, or the following week. So right now it looks like a go for the launch. Chris and I are both nervous, but excited that this treatment could help Bailey so much, but we are also acutely aware of the risks it also poses. Bailey is in excellent health, with minimal other issues so it is felt that he is a great candidate for transplant and would do fine through the process.
Chris and Bailey are now able to stay in the hotel for an additional week, unfortunately the price nearly doubles, although it is still cheaper than anywhere else except of course for the Ronald McDonald House which we are of course still hoping for.
Well I think that brings you all up to date for now. Thank you to all for your support, positive thoughts and prayers, they are all greatly appreciated.
Todd and the Robinson Family
Wednesday, September 28, 2005 5:33 AM CDT
Hello and good morning...
Not much to report today on the adventure in North Carolina. They had no appts on Tuesday. Today they are meeting with a surgeon to hopefully confirm that Bailey does not have a hernia (there's always something new and exciting with the Robinson Family). Chris will also meet with the transportation/lodging people as they have to move tomorrow and we don't know where or for how long at this point. Hopefully there is some room at McDonald's house but we have to wait and see.
On the good side we did finally get reapproved for Medicaid for Bailey. YAHOO!! That will certainly help. Not much else to report here in NH other that Fall has finally arrived. The nights and mornings are so cool and crisp. The leaves are just starting to give a hint of their color. My favorite season next to old man winter if you couldn't tell. Alright, talk to you later after getting these reports from Chris today. Goodbye for now.
Todd
Tuesday, September 27, 2005 5:21 AM CDT
Good Morning,
Sorry for the delay in updating the site, apparantly there was some website problems. The news from NC for yesterday is that Bailey's vision is A OK. Nothing wrong that they could find. Bailey's spirits are good, he really did not appreciate having his pupils dilated but otherwise is doing okay. We are still waiting on an answer for the umbilical cord match, hopefully in the next couple of days. Today is a day off, in preparation for the big meeting tomorrow, but now that got pushed off until Thursday. To talk with the head BMT people and make sure we are all on the same page.
Chris is doing okay, she misses being home terribly and she wanted to make sure I put a shout out to all her online family/friends that have been and are going through similar circumstances. She can't wait to gain access to a computer, unfortunately all of the internet cafes down there are very expensive to use.
Those of us in NH are doing alright. We had a beautiful weekend, enjoyed a chili cook-off contest at the firehouse. Britta sure does love the chili, she was quite funny throughout the whole event.
I guess that is all the news for now. Talk to you all soon.
Todd
Friday, September 23, 2005 7:39 PM CDT
Hello, Bailey had a quiet day of testing today. The decision has been made to scour the umbilical cord blood banks for a match for Bailey. Hopefully we can have an answer to that in the next week or so, time will tell. Bailey had a great birthday, and had a fine time at Chuck E. Cheese's last night. They have the weekend off and plan on just going to the park, swimming, and enjoying the nice weather. I'll let you know if there is anything new to report... Bye for now.
Todd
Thursday, September 22, 2005 2:58 PM CDT
Bailey and Chris were greeted this afternoon upon returning to the hotel room with LOTS of helium ballons and cards and gifts from friends and family celebrating his 7th birthday today. Bailey was very overwhelmed by the outpouring of love. I spoke with him just a short while ago and he was crying about how much he misses his sister, brother, father, grandparents, aunts, uncles, classmates, friends, teachers and many others. Thank you to all of the Pine Tree friends and teachers who made this possible, he greatly appreciates it. He even recieved a remote controlled truck from his Doctor in NC for his birthday. They are on their way to Chuck E. Cheese's for the afternoon and he is going to play some skeeball for everyone.
On the other side of all this happiness we learned to day that his sister does not match enough to qualify as a donor for the bone marrow. The search begins today through the umbilical cord blood bank at Duke. The second piece of news is that there have been some significant changes in Bailey's Brain MRI from just 6 months ago. The disease is continuing progress and it is now all systems go for the Bone Marrow Transplant, now we just need a match. Please keep this in your prayers as we move forward. Thank you.
Thursday, September 22, 2005 6:18 AM CDT
Well they made it through the MRI process. Bailey scared everyone briefly when they thought he was sedated and ready to go, he all of a sudden pops up and starts asking mom about a toy he wants for his birthday today. HAPPY BIRTHDAY BAILEY!!! ;) They have a light day today of studies for his birthday and are planning on a big treat of going to Chuck E. Cheese's. Bye for now.
Wednesday, September 21, 2005 5:16 AM CDT
Chris and Bailey were exhausted yesterday afternoon after their 5am start and travel to UNC at Chapel Hill. They both spent the day doing all sorts of neurological and psychological testing. Chris states Bailey did very well, and is starting to settle into the crazy routine. Everybody pray for Bailey today as today is the MRI day. I hope there have been no changes...
Well this exhausted father is back to getting the kids ready. Have a great day everyone.
Tuesday, September 20, 2005 5:26 AM CDT
Well the first day of testing was marked by the first exam being canceled, but noone informed Chris and Bailey. So they had checked in, told to wait in the waiting room, and after continuing to check on their status and being told it would be just a few minutes, 2 HOURS later they state OOOPPPS, Sorry, forgot you guys were still here. They did a nice job and made it up to Bailey with a nice toy though, so he was happy at the end. Testing continues today...
Britta's Peroxisomal panel results came back yesterday was normal. This indicates an 80% chance that she is NOT a carrier for ALD. YAHOO!!!!
Other small excitements, Brandon being a sweet wonderful kid asks if he could clean the care out and give it a wash while we were at the Firehouse on Sunday. So of course I said sure, go ahead. I go to check on him with Britta in my arms and he has the hood up, and is actively scrubbing the engine clean!!! Well, now unfortunately the car does not run well at all. I leave for a car accident later on and my siren dies as well. Then later while reconciling some financial issues with Christine, we find out the hotel as charged us over $1,000 out of the blue for "incidentals". Of course that money had already been spent for mortgage and other bills, those checks just hadn't cleared yet. So yesterday was spent on the phone tracking down solutions, what a joy.
Britta had a great first day at the DayCare, they took wonderful care of her. The nervous father only called twice and was informed that the first time she was taking a nap, and that the second she was looking at a book.
So there is an update for you all on the happenings up here in NH and down there in NC. Talk to you all later.
Todd
Monday, September 19, 2005 5:13 AM CDT
Hello, I spoke with Chris last night. She and Bailey had a good day wandering around Durham. They were successful in finding a grocery store, but now there is the challenge of eating as they do not have a microwave as we thought she would have. Their spirits are good and ready to begin the testing process this morning. I'm off to my challenges of getting a teenager and baby ready for their new days. Talk to you all later.
Todd
Saturday, September 17, 2005 8:02 PM CDT
The eagles have landed!!! After a delay in Washington, DC they have successfully made the trip to Durham, and cab rides to the hotel. Chris reports safe travel, and complete exhaustion for the both of them. They had a dinner of chicken sandwiches from room service that were way too expensive, but she feels ready to get acquainted with her new surroundings in the morning. Have a good night.
Todd
Saturday, September 17, 2005 7:56 AM CDT
Hello Everyone, this is Todd. I spoke with Chris last night, they had a fine bus trip to Boston and were ready for the train. So far so good for them and us as well as we adapt to a much emptier house. Just a quick note, have lots of little projects to complete. Bye for now.
Todd
Thursday, September 15, 2005 9:23 PM CDT
Well, Bailey and I will be off on our big adventure tomorrow!
Thanks to everyone for all their love and support as we embark on this new endeavor.
Below you will see the address to the hotel which we will be staying at until September 28, if anyone would like to write a letter to Bailey. He loves to receive mail!
I have yet to find easy access to a computer for these first two weeks, so Todd will be updating the website every evening.
If you see my family out and about please give them a big hug from Bailey and I.
Christine Robinson
Monday, September 5, 2005 8:13 PM CDT
Tomorrow the kids return to school! Wow! Has it really been one year since we received Bailey's diagnosis?
Yes, it was last August 25 when it seemed our little piece of the world was not so safe and secure.
Yet we made it through the year and we celebrate it. In fact we celebrate every single day.
I hope you enjoy the new photos on Bailey's slide show and take a moment to read the initial entry once again. I just read it over myself, and I'm sad to report Bailey does progress with some of the symptoms listed, yet happy and grateful for what we do have, and that is mostly hope.
Todd and I have decided to move forward and look into other treatment options, specifically, Bone Marrow Transplant.
We have located the best program where Pediatric Bone Marrow Transplant's are performed and will be having Bailey evaluated to determine if he is a good candidate for the procedure.
On about September 16 Bailey and I will travel to North Carolina and stay for about two weeks. Bailey will have an MRI, an EEG and many other tests in order to determine where he is at with the disease progression.
Todd and I and the transplant team will then discuss the possibility of Bailey receiving this treatment.
The trip is coming up quickly and there is a lot to do to prepare, yet life goes on, somehow, as it has all year.
But something has changed. Todd and I no longer feel our safe and secure world is lost to us. We feel more confident as parents than ever before, more dedicated to one another than imaginable, and ready to deal with whatever is next. We know we can do it! Bailey just keeps on showing us how.
Christine
Monday, September 5, 2005 8:13 PM CDT
Tomorrow the kids return to school! Wow! Has it really been one year since we received Bailey's diagnosis?
Yes, it was last August 25 when it seemed our little piece of the world was not so safe and secure.
Yet we made it through the year and we celebrate it. In fact we celebrate every single day.
I hope you enjoy the new photos on Bailey's slide show and take a moment to read the initial entry once again. I just read it over myself, and I'm sad to report Bailey does progress with some of the symptoms listed, yet happy and grateful for what we do have, and that is mostly hope.
Todd and I have decided to move forward and look into other treatment options, specifically, Bone Marrow Transplant.
We have located the best program where Pediatric Bone Marrow Transplant's are performed and will be having Bailey evaluated to determine if he is a good candidate for the procedure.
On about September 16 Bailey and I will travel to North Carolina and stay for about two weeks. Bailey will have an MRI, an EEG and many other tests in order to determine where he is at with the disease progression.
Todd and I and the transplant team will then discuss the possibility of Bailey receiving this treatment.
The trip is coming up quickly and there is a lot to do to prepare, yet life goes on, somehow, as it has all year.
But something has changed. Todd and I no longer feel our safe and secure world is lost to us. We feel more confident as parents than ever before, more dedicated to one another than imaginable, and ready to deal with whatever is next. We know we can do it! Bailey just keeps on showing us how.
Christine
Tuesday, August 30, 2005 6:20 PM CDT
Hello!
We have just returned from two days worth of testing and meetings at Dartmouth Hitchcock Medical Center.
Bailey had an EEG on Monday. He did the best job lying very still for the test for a long time. We'll have the result of this test tomorrow.
Today we met with Bailey's Endocrinologist and some labs were ordered. We may be adjusting some medications based on the lab results.
We then met with Bailey's Neurologist and spoke at length about the treatment Bailey has been receiving, where we are at as far as disease progression, and what to do next.... we'll talk more about that at another time.
One last stop at the lab for blood work before heading home, and we are so happy to be here. It was a long two days.
Tomorrow Brandon has orientation at the High School and I still am in denial that I am the mother of a High School Freshman.
Thursday I'll meet with Bailey's team at Pine Tree to get the school year started of right for him.
Friday I'll be meeting with a person who may possibly work with Bailey, an Art Therapist.
So far the week has been busy, and it will continue to be, but we're getting a lot done, making good, positive steps, so, as Brandon would say, it's all good.
Christine
Thursday, August 18, 2005 7:27 AM CDT
Yesterday Bailey had a check up with our local Pediatrician.
We had a lot to discuss and go over as we prepare for a new school year!
A new medication was added to Bailey's usual schedule. He again has become incontinent, despite being on the highest possible dose of medication to prevent this. The hope is that this new medication will aid the one he is already on.
Bailey's doctor is referring him to a Pediatric Ophthalmologist, since he has had some complaints regarding his vision.
We also will soon be taking Bailey to Dartmouth-Hitchcock Medical Center for his usual appointments with his Neurologist and Endocrinologist. He will also receive an EEG at this time, since his seizure activity has continued.
It's getting busy around here! School will be starting very soon, and we and Bailey's team at school intend to meet before classes begin.
We will be traveling to Baltimore for appointments at Kennedy Krieger Institute and Johns Hopkins Hospital in October, so we have a lot of preparing to do for that.
We have a big meeting tomorrow in order to apply for Special Health Services, a program through the state. Unfortunately, come Saturday, we will have lost one of our insurance policies, Healthy Kids, another state program, so hopefully we will qualify for this new program!
Keeping us busiest of all is Brandon with his job and busy social life, and Britta, walking and practically running all over the place!
Todd and I have a few more fun secrets in store for our kids before summer ends, so it's not all work these days.
Hope your August days are busy with lots of fun, too!
Christine
Saturday, July 30, 2005 9:22 PM CDT
Surprise! A week at Popham Beach! And we did have sunny days, with one terrific thunderstorm in the evening!
The children awoke Saturday morning to buckets overflowing with beach toys and an invitation written on a sand shovel to go on an adventure with mom and dad. They had no idea for how long or where to. Todd and I were up until 3:00 AM packing in secret!
When the children saw the ocean they were screaming and laughing! It was so exciting!
Even more exciting when they learned we would be staying in a cottage for a week!
We were met at Ocean View Park with more buckets overflowing with toys and a key to our cottage.
Thank you so much to Partners In Health for helping make Bailey’s dream vacation come true! And thank you to Ocean View Park for giving us all a lot of special memories.
Our days were filled with early mornings, long days at the beach, daily races to find the first Sand Dollar, long walks and late nights.
Every evening dinner had a theme, which Bailey found very fun. One night it was a Mexican theme with an appetizer of chips and salsa and quesidillas for dinner (all made specific to Bailey’s dietary needs) with plenty of fat free frozen yogurt for dessert.
Another evening the theme was “Down Home” and we served fresh vegetables and dip, Healthy Choice Kielbasa, and potato salad, all within Bailey’s dietary limits.
We explored Fort Popham, read a mystery book and “ghost” stories, played backgammon, hiked to the island we can’t remember the name of, checked out drift wood structures and listened to Bailey’s favorite CD about 92 times.
Brandon and I taught Bailey to boogie board, our favorite beach pastime, and even Todd jumped in for a while!
Todd found the very first Sand Dollar of the trip, and once the kids learned there was a reward, they kicked their shell-seeking skills up a notch! Bailey was the first to find the Sand Dollar on Thursday, and he was very happy to receive his prize!
With no television, computer or telephone to distract the children or the adults, it was the perfect week! We did have a radio, which we used just a few times to check the forecast. We did depend on a watch, but just for Bailey’s medication doses.
This was quality time! There was splashing! There was sand in your lunch! There were sunburned noses! It was perfect!
If a kid said “Dad, can you go to the water with me?” the answer was YES! “Mom can you build a castle with me?” YES!
Todd and I really needed to get on that kid level….. Of course, we are pretty sore and tired tonight, but we’ll get over it!
We basically woke up each day and got as much fun out of it as we possibly could!
Once we arrived home and unpacked and the kids got their TV fix I decided to get my email fix, and sadly learned another friend has lost their child. Lawrence, all the way in Wales, had passed away. Virginia, Lawrence’s mother, and I have been corresponding for just six months or so, having met through a web site for families with an ALD connection.
Lawrence and his mom, through her emails, and without intending to, had been teaching me not to miss a moment. I spent my vacation with that as my motto.
I cannot help but be stunned by the fact that he is gone, yet stunned to feel so affected… after all… I had never met this child, yet he and his mother had become so important to me.
And I realize as I write that while this disease tears lives apart in it’s destructive nature, it also brings lives closer together.
I’m going to spend my evening thinking of a little eight-year-old boy who lived in a village on the coast of Wales… who probably never realized how much he meant to people so far away.
Saturday, July 23, 2005 0:45 AM CDT
Surprise!
We are taking the kids on a special, secret trip! They do not have a clue!
Can you guess where?
Check out the site next Sunday to find out!
Sunny days for us all!
Todd and Chris Robinson
Wednesday, July 20, 2005 7:07 AM CDT
The Tooth Fairy visited Bailey last night! He lost his very first baby tooth! He was so excited about it!
Our fabulous mothers helper, Samia, helped him finally remove it and he was so thrilled! I wanted to have a party to celebrate. Every little thing is so BIG to me these days.
This morning the kids and I will spend the day at the river with family.
Uncle Chad, Aunt Courtney, Aunt Shella and her boyfriend Tammer are all here now and the kids have been having a great time!
Stay cool!
Sunday, July 17, 2005 7:23 AM CDT
Bailey has been having a very nice summer, yet it has been very busy. He gets tired easily and has a tough time even staying up until bedtime at 8:00.
This week family is visiting and staying in a rental house nearby.
So far the Great Grandparents are here from Florida, the Grandparents from Maine, and Aunt Katie from Florida with her boyfriend Tom.
Even a close friend of the family, Mrs.Welman, is here for the fun!
Bailey has been having a great time running Tom and Aunt Katie ragged!
More Aunts and Uncles are on the way so we are all in store for a fun week!
Hope you have some fun, too!
Thursday, July 7, 2005 8:47 AM CDT
In our very first entry we explained as best we could how the disease worked and what symptoms we may see and how to treat or live with them. Today we thought we would delve a bit deeper into one important area, behavior. We had previously written:
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X-ALD can present in several forms. The classic childhood form is the most severe with onset in boys usually between 4 and 10 years of age. Initially they may experience such difficulties as learning disabilities, perceptual problems, attention deficit disorder, short and long-term memory loss, impaired vision, coordination or gait, and various personality and behavioral changes.
It has been established by the experts at Johns Hopkins that some of the above may be occurring with Bailey. Chris had the opportunity to meet with Dr. Cox at Johns Hopkins and learned a lot about initial behaviors these children present with. You can liken the initial onset to that of a child with Autism, in that they are in a regular state of overload. We are learning how to apply discipline accordingly. You may say to your child "You're not listening!" for example. For an ALD child, there's just too much being said! They are listening, just not hearing it.
Along the same topic, we are learning what behaviors may be due to his disease, or a symptom of it, and how to deal with that. The most important thing we have learned so far is that it is imperative that Bailey not feel he is being punished for things he cannot control.
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If we were raising a child with Attention Deficit Disorder he would be on the proper medication and possibly receiving additional services from school, and he would be treated according to this disability. He would not be constantly criticized for an inability to slow down and “pay attention”.
If Bailey were hearing impaired he would see a specialist and receive hearing aids, possibly take additional lessons in sign language, and the whole family would learn how to communicate with him effectively. He would not be chastised for “not listening”.
One of the biggest struggles for Bailey is comprehension, or to grasp mentally, to understand.
In a one on one, quiet setting, Bailey and I, for example, can have a simple conversation about an upcoming activity. I might say “Bailey, in a couple of hours we will go swimming, so go get your stuff together” and you might think Bailey would go collect some water toys and swimming trunks and wait for me to let him know it’s time to go. However, the way I let Bailey know of the activity he would be unable to effectively comprehend what the plan is and what is expected of him.
Here’s how it works…. “in a couple of hours” ….. that means nothing to him. It could be in five minutes or five hours, he can not grasp this. In response to this Bailey will ask repeatedly, “Is it time yet?” He has been known to do this over thirty times in one hour, while he had a diversion activity. Can you imagine what frustration he must be feeling?
….. “we will go swimming”….. who are we? Just Bailey and I or is Brandon coming. What about Dad. Bailey has taken a comment like this and assumed it included his Dad and then ended up crying because Dad was at work! Poor Bailey! He will also begin obsessing…. “Is it in a pool? Oh, are we going to Caleb’s pool? Oh we’re going to Caleb’s pool! Is it the lake? Is it Conway Lake? Will it be the river? Weston’s Beach? Davis Park?” and he can go on and on and on. Can you imagine your mind going at that speed, how frustrating that must be?
….. “so go get your stuff together”…. Ok, by now you’re probably starting to understand how Bailey reacts and you can guess that this request is far too broad for him. This might even push him over the edge and cause a full-blown break down.
So, rather than put Bailey through so much confusion, frustration and pain that simple request made, lets try it this way….. “Bailey, at 3:00 Mommy and Bailey will go to Conway Lake and go swimming. Please change into your swimming trunks and get your beach towel. You may bring some water toys, as well.” Now, we’ll get the results we are looking for, he will change, get some toys and most likely be able to wait for 3:00…. It’s a big difference for him, but it’s so simple.
That was is an example of a conversation in a quiet place one on one. Imagine Bailey in a crowded, loud, busy atmosphere. You can guarantee his reaction is multiplied. Bailey has been having more troubles in larger groups for some time, aside from comprehension. The noise of the lunchroom at school was really becoming a big complaint in the past few months. When we take Bailey to activities with a large number of people we must watch him as we would Britta.
But even adding an additional two or three people to the mix can cause Bailey an enormous frustration. If I were having the above, appropriately worded conversation with Bailey and we had guests who were chatting with Todd at the same time, Bailey still is very likely to be left feeling confused and angry. In this situation there is too much being said for Bailey to comprehend the words which are directed at him.
So, all that explained, what about discipline? Would we scold Bailey because he is annoying us with the same question over and over, knowing this is beyond his control and a part of his disease? Of course not. We will be patient with him. We will try to make sure we offer our words in the most direct and clear way possible so that he has a better chance of understanding.
Would we expect Bailey to immediately obey a direction were we in a crowded room with multiple conversations going on given our new understanding of his inability to grasp the concept? And if he did not would we reprimand him, punish him? Absolutely not. All that background chatter serves as white noise to Bailey. Instead we would get close, be sure we had his attention by eye contact or touch, and speak very clearly to him about what we expect.
Another important trick we have learned is to not make the problem larger. At times when Todd is giving Bailey directions I may think, for example, that he would have a clearer understanding if it were worded in another way, and I may be tempted to talk over Todd, or interrupt him. By now you know this would be futile. He is probably not only not going to hear me, but whatever Todd was saying is lost to him as well, so we keep quiet and allow whichever parent was speaking to Bailey to go on. We do not jump in and repeat the directions in our way; we just try to remember to remain quiet. Maybe we will chat about it later, maybe not.
We are choosing our battles and choosing to make this time as happy for everyone as we possibly can, and we hope that the above explanations serve all who read them well, and possibly enhance the time you spend with Bailey, too.
Here’s to a greater understanding for us all!
Todd and Chris
Saturday, June 25, 2005 7:55 AM CDT
The school year has come to an end and summer vacation began with an exciting trip to Water Country for the children!
Brandon and Bailey had Todd and I running all over that park and going on water slides that I thought I would never go near. We all had a great time and it was the perfect way to start our vacation.
I am so pleased with how well things went for Bailey this school year. We began the first grade with a very new, scary diagnosis and a lot of restrictions. I wondered how it would all work out with Bailey attending school, and of course the staff at Pine Tree made every effort possible, and it all worked out fine.
We send Pine Tree Staff our sincere gratitude and thanks for all of their hard work! I know monitoring Bailey where food is concerned is a challenge, and I thank you all so much for your efforts!
We are looking forward to a wonderful summer full of big and small adventures, lazy days in the yard, and good health! Especially good health!
Hope your summer is full of the same!
Chris
Monday, May 30, 2005 6:21 AM CDT
Bailey is doing very well.
He stayed home from school all last week as he was very tired, and over this weekend is feeling stronger and more energetic.
He was able to play quite a bit in his sandbox and the swing set his good friend Caleb had outgrown and passed on to him, (thank you so much, Caleb and family) so I expect he will be back to school tomorrow.
Meanwhile Brandon has been working hard to assist with ALD research and connected with an organization which funds such projects. He is selling stickers ($1.00) and baseball hats ($15.00) for the Fight ALD Organization. If you are interested in purchasing any please email him at our families address.
I'm so proud of his commitment to help Bailey and other children! He is growing up far too quickly, but into such a wonderful young man.
Britta turned one and celebrated with a baby Luau that was a great time for her. She is still the family teddy bear and she keeps us all laughing.
It's a busy time, I'm happy to say, with T-Ball games, Cub Scout activities, and plenty to do in the garden. Our garden is soaked with all the rain and a few toads have moved in, so the kids and I will be off searching them out! Hope you have something fun planned for the day as well!
Monday, May 23, 2005 12:32 AM CDT
Sorry for the delay in updating the web page. We were without a computer for a period of time. Service has been restored just in time to share some troubling changes.
Last night Bailey was seen in our local Emergency Department after suffering a Simple Focal Seizure. In layperson terms, this was a mild seizure.
However, this event is telling of the future.
Today Bailey was evaluated by his Pediatrician and seems fine neurologically, meaning the seizure does not appear to have caused any further damage.
He has been prescribed Diastat for future Seizure activity and a plan of action is already being worked out should Bailey seize while at school.
This change will not change activity for Bailey too much since when he is away from Todd or I he is with an emergency medical technician, a nurse, or other medical provider. Lucky for Bailey all of his friends or sitters have that connection and a great understanding of what to do should the need arise.
We are so grateful to be able to keep things going as usual for him, despite the serious changes.
-Chris
Saturday, April 23, 2005 6:44 AM CDT
Medication Changes
Our goal where Bailey’s adrenal insufficiency is concerned is to provide medications which will mimic the Adrenal Gland’s normal function. We have not reached that place yet, so Bailey’s Pediatric Endocrinologist has added Florinef to Bailey’s daily regimen of medications.
Previously Bailey had been taking the maximum dose of Detrol and was still having episodes of incontinence. His Pediatric Neurologist decided that in his case we could put him on a higher dose. It seems to be helping so far!
Bailey is doing a great job taking so many medications and supplements. Even the Lorenzo’s Oil is taken quite easily. For moms and dads looking for a way to help their child take Lorenzo’s Oil you might try emulsifying it with 113 grams of Fat Free Vanilla Yogurt which has about 90 calories. It has really worked for Bailey, and I hope it helps for you, too!
Saturday, April 16, 2005 7:30 AM CDT
Good news!
The official report is in regarding Bailey's MRI. There is not a significant change in the last six months, therefore we will continue with the treatment plan of therapeutic diet and Lorenzo's Oil.
The area where demyelination has occurred is in an area different than most ALD boys, in fact it has only been seen this way in one other child, so we will continue to closely monitor behavior and ability and perform MRI's every six months or sooner if indicated. Our next MRI will be in Baltimore in October.
More good news!
This months lab report is in as well and I have finally gotten Bailey's C26:0 to 0.190 which is a good place to be. We will keep on doing what we've been doing since it is working!
The kids and I are very busy in our garden. It's a good place for learning hidden as fun! So that's where we'll be during vacation! Hope you all have fun plans, too!
Saturday, April 9, 2005 6:45 AM CDT
Good morning! It's a bright and sunny day and I think I'll follow mother nature's lead.
Good news! Todd and I closed on the house Friday at noon... we are home owners! We feel so grown up!
Seriously, though, it is such a relief to know we can stay in the house we have grown to love so much. We'll never have to worry about moving into an appropriate space with everything else going on.
The children and I will sow our tomato seeds today and start on some yard work... at least the few parts of the yard that are not still snow covered!
I hope everyone has something fun planned for their day, too!
Chris
Wednesday, April 6, 2005 7:56 PM CDT
Bailey did a great job at Dartmouth today. He is really such a brave boy. The sedation went well and the MRI was completed in about 45 minutes.
Unfortunately the second MRI, the one from six months ago, had not arrived so comparison was made using the first MRI only which was done about a year and a half ago.
There was obvious change from MRI #1 to MRI #3 which I expected. It did appear that the demyelinating effects of the disease have progressed, but without MRI #2 it impossible to give a true assessment of the progression, so I won't speculate here.
Once the data reaches Dr. Raymond at Johns Hopkins in Baltimore and we hear from him exactly what has changed in the last six months I will update everyone.
Thanks for your support during these trying past few days.
Chris
Tuesday, April 5, 2005 8:27 PM CDT
Tonight I vent.
We arrived just in time for Bailey’s MRI today at Dartmouth-Hitchcock Medical Center and were happily met by a Child Life Specialist. She was there to help Bailey through the procedure and did a fantastic job with him.
She waited with Todd and Bailey and I and helped entertain Bailey chatting and working on a puzzle.
Unfortunately the MRI staff was behind schedule so we had to wait a long time. We were finally called in at 1:45 after waiting an hour and fifteen minutes.
The MRI tech did not hesitate to sweep us all right into the area, announce we could not enter unless we left all metal objects behind, and rushed Bailey into the loud dark room the MRI is housed in. No time to ask questions. No explanation to Bailey about what would be happening. Not even a “Hi Bailey, I’m so and so”…..
Bailey was almost immediately in tears. He kept asking about the loud noise and people kept telling him to lie down. Todd, the Child Life Specialist and I were trying our best to answer his concerns, dry his tears and help him relax.
We were doing this for about four minutes when another person came in, hands on her hips, and indicated we needed to get the show on the road. The Child Life Specialist spoke with her and she left.
We were just getting Bailey comfortable with lying down and putting on the headphones when the woman came in again with another person, and said “We’ve wasted enough time. We’ll have to reschedule” I was floored! We were swept right out of the room and I just stood there, incredulous! I said something to the effect that we had scheduled this, planned for this and prepared for this test for six months and we were not rescheduling, we were having the MRI. One of the technicians spat out “We were told he could handle it!”
Poor Bailey. That lady is lucky Mama Tiger can keep her temper in check. That was pretty rotten to say in front of a scared little boy.
The MRI department had called me last week and asked if Bailey had been through the procedure before. I said yes he had, six months ago without sedation. I also told them I was not sure if he would need to be sedated or not. I asked if I should prepare him for that in case and they said no, he would be fine. I tried to explain that in my opinion Bailey might not be okay with it but she just brushed me off.
So there we were, Bailey is crying, I’m crying and they refuse to give us a moment to help Bailey through it all. I said, okay we will reschedule for tomorrow morning. The technician LAUGHED at me! I could not believe it. She laughed and said they had no time available tomorrow. They were behind schedule so too bad for us. I said as much to the people there, now about six of them just staring at me. Bailey may have been crying for about seven minutes but they were an hour and a half behind schedule before we even showed up.
I have been holding my breath waiting for this appointment. In my life there is nothing more important than getting those results. Decisions about Baileys care await those results. But we did not win this fight.
The Child Life Specialist led us all the way to the pain free clinic where we were told sedation was not an option for today, which we already knew, and were we available next week? I went off the deep end.
I started planning this day weeks ago. Who would watch Britta? What about Brandon after school? Will we need to bring refrigerated medications? How much food do I need to bring for Bailey? Can Todd get the day off? Can we afford for Todd to take the day off? Cancel this appointment, reschedule that one and at the last minute find a place for Brandon to spend the whole day. It took weeks to work it out. For nothing!
So, we are now scheduled for an MRI with sedation tomorrow afternoon.
While driving home I thought a lot about all of the wonderful people in my life and how now and then I run into a real rotten person or two. I wondered how someone in the medical field could be so mean, so cold to a little kid who was scared. Then I realized I was not dealing with medical professionals as I think of them, but simply people who were trained to operate a piece of machinery. They don’t need compassion to learn to say “hold still”. They don’t have a feeling in their heart that moves them to provide care. They have a certificate that says they basically can operate a very huge camera.
We were not at our local hospital where you always run into a friend or neighbor, where you many times know someone who is working in whatever department you are in….. today Bailey was just a number. Maybe I’m spoiled. I walk in to the clinic or hospital (a lot) and folks working there say hello, admire the baby, give Bailey a smile, ask how is Brandon and in the end leave me feeling as though my child is cared about, his situation is important, and my concerns are validated.
I am always looking for the lesson.
When I started writing this journal entry I just wanted to spout off about those two rotten people. I was just so filled with anger. Now as I end it I feel so grateful. Grateful to live in a community full of caring providers, from the school nurse to the local docs and everyone in between…(especially the Paramedics) the effort you make with your patients is noticed and it is appreciated by me and many, many families. We just don’t always tell you…. So I am…
With gratitude,
Christine
Saturday, April 2, 2005 6:13 AM CST
On Thursday Bailey travelled to Portland, Maine and met with a Pediatric Cardiologist. The Cardiologist did not seem overly concerned about the issues Bailey has been having but did choose to have Bailey wear a monitor for the next month. When Bailey has the shortness of breath or the feeling in his chest he has been trying to explain he can push a button and his cardiac function will be recorded at that time. The data is then easily sent off for analysis.
On Friday, Bailey had his monthly blood work done and I'm anxious to receive those results. He has had no vomiting illnesses all month and I'm hoping that will be reflected in the lab report and we have some good changes.
There are lots of changes going on around here!
Brandon has been hired by Story Land... his first job! He will start working once school ends, four days a week. He is really growing up! I guess he is four inches taller than me now! Yikes!
Britta is cruising all over! She does not bother to crawl. She walks along the furniture and gets wherever she wants to go!
Todd and I are about to make the change from renters to home owners. Our plan is to close on the house on Thursday!
It looks like Spring is really here. The yard is a mess of dirty snow and mud, we have seedlings sprouting in the house, and we have been jumping in every puddle we come across. I highly recommend jumping in puddles with your children... the muddier the better! It's raining right now so we will probably have some great puddles today and tomorrow.
Happy puddle jumping!
Christine
The Adrenal Glands..... small yet significant
Adrenoleukodystrophy is related to primary Addison's Disease (chronic adrenal insufficiency) as many of you have heard us discuss. We have finally gotten a moment to more thoroughly explain it, so here goes.....
The Adrenal Glands, of which we have two, are each above a Kidney. They are about the size of mini-cupcakes... very small with a BIG job. They are a part of the Endocrine system. The Endocrine system works with the nervous system and the immune system to assist the human body in dealing with stressors. They secrete Cortisol and other essential hormones.
Cortisol works with adrenaline to help the body manage physical and emotional stress, converts protein into glucose to boost flagging blood sugar levels, works in tandem with the hormone insulin to maintain constant blood sugar levels, reduces inflammation, helps the body maintain a constant blood pressure, and helps the workings of the immune system.
Adrenal insufficiency was one of the first clues we had when diagnosing Bailey. Symptoms include loss of appetite and weight, nausea, vomiting or diarrhea, muscle weakness, chronic, worsening fatigue, low blood pressure, salt cravings, dehydration, hypoglycaemia, or low blood sugar levels (especially in children), increased pigmentation of the skin, particularly around scars and bony areas, and mood swings, mental confusion or loss of consciousness.
The genetic defect in ALD causes a decrease in the ability to degrade very long chain fatty acids. These build up in the adrenal glands, brain, plasma, and fibroblasts. The build-up of very long chain fatty acids interferes with the ability of the adrenal gland to convert cholesterol into steroids.
Therefore Bailey's Adrenal Glands do not produce sufficient amounts of Cortisol for normal, healthy body function. This is why last year he would become so very, very ill!
Bailey is now on a daily regimen of Cortef, which is a mineralcorticoid steroid. He now has a "moon face" and he is dependant on the medication, but he is HEALTHY.
Thankfully, gone are the days of being hospitalized over viruses. We now can administer a "stress dose" (a higher dose) of Cortef when Bailey has a vomitting illness or a high temperature through a pill or injection.
There may still be times when Bailey is hospitalized due to illness or injury, but these will be shorter hospital stays.
He still has had a relatively tough season dealing with illness, but what a relief to have the proper tools to assist him.
Science friends, as always, we ask for your kind critique of our lesson.
Christine & Todd
Thursday, March 24, 2005 5:45 AM CST
Bailey and Bamboo are getting ready to go back to school this morning!
Bamboo is the first grade class mascot, a fuzzy stuffed panda bear. The children all take turns having Bamboo overnight and write about it in a journal. Bailey happened to become ill while Bamboo was visiting us so he stayed and really helped to keep Bailey company while he was sick. Bamboo even went to the hospital with us and held Bailey's hand.
Todd and Britta are feeling much better, too, so things are quieting down around here.
Chris
Tuesday, March 22, 2005 5:20 PM CST
YIKES!
Britta and Todd are now home sick with Bailey. Britta has an ear infection and Todd has strep throat.
Brandon and I are washing our hands like crazy, Todd has taken over control of the television, and Bailey and Britta are very cranky.
No one is in the hospital so I am happy!
Bailey's school has their big "snow day" tomorrow at Cranmore where they will ski all day. Unfortunately he and I will miss the big event which is the last of the ski program.
We do have a ski evening planned for Friday with other families from Saco River Medical Group where Todd works, so keep your hopes up that Bailey will be over this illness and able to go!
Take care!
Chris
Monday, March 21, 2005 6:52 AM CST
Bailey is still home.
Yesterday he complained of ear pain and when I took a look with my Ottoscope I could see he had an infection, so off to the hospital, and about a four hour wait for the doctor to take a look and start antibiotics.
His Glucose is still normal and he is still eating and drinking, and boy is he irritable!
Bailey had just finished a course of Antibiotics last Tuesday, so I'm a bit concerned that he would end up with an ear infection at this time, so of course I'll be in contact with his Pediatrician this morning.
Hope everyone is enjoying Spring!
Chris
Saturday, March 19, 2005 7:11 AM CST
Good morning!
Bailey is still doing fine here at home.
He is just presenting with symptoms of a simple cold.
It's strange to see him with an illness that just presents itself as it would for you or I. I am so happy to have this issue to adapt to!!!
Chris
Friday, March 18, 2005 3:34 PM CST
Hey everyone.
Bailey awoke this morning with a fever, so he's been home from school today.
His Glucose has remained normal and he has not completely lost his appetite so I think he will get through this just fine.
It feels good to know the Cortef is doing its job.
Chris
Wednesday, March 16, 2005 7:37 PM CST
Hi! What a busy few days we have been having.
Yesterday Bailey had a check up with his Pediatrician. It was good timing since we had a few new things to discuss.
About two weeks ago Bailey started bedwetting again. He is at his maximum allowed dose of the Detrol, which he was taking in the morning and the evening, so we changed it to the full allowed dose in the evening only.
We also discussed Bailey's pain. The leg pain he experiences almost daily and also now has pain in the flank area. Tylenol does not help, but the pain also does not keep Bailey from being active. I have been doing about 30 minutes of massage with Bailey a day and am looking to educate myself on technique to be sure he is receiving the most therapeutic benefit.
We also discussed adding exercise in a warm pool. Nothing too formal for now. Even a swimming lesson with other children would possibly be beneficial.
Not only did we discuss Bailey's behavior, Dr. Emery got to experience it first hand. Bailey has huge melt downs and temper tantrums over very little.
During the past week or so Bailey has been short of breath with no physical exertion to explain it, his skin has been clammy and he has had numerous dizzy spells and lots of stumbling. Bailey’s Endocrinologist will be seeing him soon regarding these issues.
Todd and I remain very confident with the care Bailey (and we) receive from Pediatrics. I feel my opinions and ideas regarding care and treatment are respected and always leave the office relieved of any anxiety I may have.
Today Bailey had an Electrocardiogram to detect any Dysrhythmias. The results of this test (which Todd actually performed at the Clinic) did look good and Bailey has been referred to a Cardiologist in Portland, Maine.
We have a big appointment coming up. It is almost time for Bailey's 6 month MRI. We are happy to be traveling only to Dartmouth-Hitchcock Medical Center for the procedure rather than Johns Hopkins.
Bailey will have the MRI without sedation, we will meet with his Endocrinologist, Dr. Cassella, and hopefully have a new (and healthier) ACTH level, and we will meet with our Pediatric Neurologist, Dr. Filiano.
Dr. Filiano has been with Bailey from the beginning, about two years now, and I am looking forward to meeting with him.
We will have three MRI's to compare once we meet and Todd and I are dreading this, yet could not wish to be meeting with anyone else. Dr. Filiano is one of those doctors who say it like it is, no beating around the bush, very straight forward. Plus he gives me the best pep talks!
Speaking of being straight forward, a lot of people have been watching the movie Lorenzo's Oil. I know I have viewed it once or twice, and I'm looking forward to part two. I think it is important for people who are watching the movie to understand very clearly that Lorenzo's Oil is hope and not a promise. The end of the movie features several children on the oil who appear to be doing very well, which is super!! However, to put it in a straight forward kind of way, these children may never have become symptomatic to begin with.
While a child carries the gene for ALD he may not automatically present with the childhood cerebral form.
I think it is important that people understand, too, that being on the oil may not stop the progression of the disease. Like I said, it is a hope, not a promise.
Please check the web site for an update about the MRI and meetings which will be on April 5.
On a happier note, Bailey is practicing jump roping. I have to commend him for this. He is really struggling, but it's for a good cause, and he is committed to it. He is participating with his school mates in the American Heart Associations Jump Rope for Heart.
His great attitude reminded me of a fund raiser the school had last year when Bailey was in Kindergarten. Pennies for Patients were raising money to help children with Cancer and the children were asked to donate their change. At the time of the fund raiser Bailey actually ended up very ill and was admitted to Dartmouth-Hitchcock. While he and I were there I was eating out of vending machines and when I would return to his room, every time, he would ask me for my change for the "sick kids". It makes me so sad and happy to remember that story. That is just how Bailey is and I am so proud of him!
Thank you for checking in and take good care of one another!
Christine
Tuesday, March 15, 2005 5:38 AM CST
Hello everyone!
I am trying to get money to help people who are sick by jump roping in the American Heart Association Jump Rope For Heart.
Can some of you sponsor me?
Love,
Bailey
Friday, March 11, 2005 5:19 AM CST
Bailey is doing just great and is thrilled to be going back to school this morning!
Over the weekend Todd and I will get together and share what we know about the Adrenal part of the disease here on the web site since we have had so many questions about it recently.
Have a great weekend!
Christine
Thursday, March 10, 2005 6:46 AM CST
Bailey is still doing fine.
It looks like we were able to catch the infection early, before it caused too many troubles for him. Getting him on the Amoxicillin right away and stress dose of Cortef has helped him a lot!
This morning he will go back to his normal dose of Cortef and we will see how he tolerates this!
He misses his friends at school a lot and is very bored with the baby and I, so that's a good sign!
Take care!
Chris
Tuesday, March 8, 2005 6:43 PM CST
Hi everybody.
Bailey is still getting through this illness just fine. Hopefully this will continue for him.
Once he is over it Todd and I will have another science lesson. This one will focus on the Adrenal part of the disease, further explaining why Bailey can become so ill.
Take good care.
Chris
Monday, March 7, 2005 5:01 PM CST
Hi everyone.
Bailey was checked out today by his Pediatrician and is taking Amoxicillin and his stress dose of Cortef.
He is very cranky and easily annoyed and acting very much like your average sick child. He is still eating and drinking and controlling the television, so everything is just fine here.
In Scotland, however, Christopher has left his fight against ALD. This family can use all the prayers they can get. Christophers mother, Monica, is an amazing woman. In the midst of her own struggles reached out to me just to let me know she knew what I was going through. She is one of the few people I've had contact with who are fighting ALD and I will always be grateful to her for letting me know I was not alone.
Life is so prescious... you just have to go out there right now and live it!
Monday, March 7, 2005 4:18 AM CST
Good morning.
The Regional Pinewood Derby was Sunday and Bailey was very proud to race in it with his car. All of the children did so well! I had a great time cheering all of the boys on.
This morning Bailey woke me up early and he was very warm. He complained that his throat hurt. His temperature is 100.0 degrees so I gave him some Tylenol and some Gatorade which he took just fine. No vomitting as of yet and I hope it stays that way.
Bailey very calmly said "I guess I have to go to the hospital". It's funny how kids adapt and he certainly has. Last year had I mentioned the hospital as a possibility he would have been crying and crying over the thought. Now, I guess, it's just becoming part of the routine.
I don't know if I feel proud of Bailey for being such a brave little guy or sad that he is hospitalized enough to find it normal. Maybe a little of both.
We will keep the web site updated as Bailey works through this illness so please check in when you can.
Chris
Sunday, March 6, 2005 4:54 PM CST
After receiving Bailey's diagnosis I started researching and reaching out. I've been blessed to connect with some extraordinary families. They have taught me more than any medical literature has and supported me like no one else could. They are all families with a child fighting ALD.
One child is really struggling right now and I would be so grateful if you would join Todd and I as we send them our warm thoughts and prayers.
Here is the link to this childs web site:
http://www3.caringbridge.org/nc/christopherkeenan/
Visit if you would like to get to know him and his family a little better. Doing so has been a very rewarding experience for me!
Sincerely,
Christine Robinson
Tuesday, February 22, 2005 6:57 AM CST
I like the hugs you give me.
Love Bailey
Thursday, February 17, 2005 5:58 AM CST
Good morning! What a busy month we have had!
Brandon and Britta have both been trading viruses back and forth, and Bailey has managed to avoid illness! Thank you LYSOL disinfectant and PURELL hand sanitizer!
February started out with a super concert at Pine Tree Elementary School. It was so great to see Bailey in it! I believe last year he was missing from the Kindergarten and First Grade show and that he was at Dartmouth-Hitchcock Medical Center.
Every child had a special role in the show and how those teachers keep them all on task I can not guess!
Thank you for your dedication to those children!
Report cards came home this month and both Brandon and Bailey have done SO well! I really am impressed with Bai. He has missed so much school! He works hard here at home with me, but we cannot duplicate classtime. Still, he is doing wonderful academically.
Partners In Health hosted another party this month. A Valentine Making Party! It was such a good time for the children. Once again, the coordinator had food appropriate for all the childrens specific dietary needs. It is so nice to go there and be able to relax about food!
Bailey has recently been challenging his dietary restrictions so I especially appreciated taking him somewhere safe.
The Cub Scouts Pine Wood Derby was this month as well. Bailey received his block of wood late giving him eight days to design and create his car. He put so much effort into this project!
He sketched out what the car should look like and Todd cut it out accordingly. Bailey sanded and painted and happily went off to the race, just pleased to be there.
Well, he ended up coming in FIRST PLACE with the fastest car! I was stunned! Bailey was thrilled! He is still glowing and we are all so proud.
He will be racing in the Regional Competition in March and we will let you know how that goes.
Bailey's class had a very nice Valentine snack which I was able to attend. I brought some Jello Jigglers (as usual) and some new fat free cookies. The children did not seem to notice that the cookies were actually good for them!
Bailey's teacher made a jello creation which I had never seen or heard of. It was terrific! It contained no fat and tasted great.
Bailey's Plasma Total Lipid Fatty Acid Profile results are in for this month and unfortunately his C26:0 is 0.430 which is the same as last month and is too high. At this point we can wonder if the January illness he had affected the results or if his diet and medications need to be adjusted. I have been told it can take up to a year to find the right calculation and I'm communicating now with Bailey's team at Johns Hopkins about what to do next.
Today is a ski day for Pine Tree students so I must run for now and help Bailey pack up! Thank you for all of your support! We appreciate it so much!!
Christine Robinson
Thursday, February 10, 2005 6:56 AM CST
HI EVERYONE! THIS IS BRANDON. AS YOU ALREADY KNOW MY BROTHER, BAILEY HAS BEEN DIAGNOSED WITH ADRENOLEUKODYSTROPHY.
THINGS ARE DEFINITELY HAPPENING, WE ARE ALL JUST NOW GETTING OVER BEING SICK. (AS USUAL I WAS NOT BADLY SICK)
TODAY IS A SNOW DAYYYY!!!!! WE ARE ALL TOTALLY READY
TO STAY HOME AND PLAY.
ON A MORE PERSONAL NOTE I HAVE OBSERVED MANY CHANGES IN
BAILEY'S BEHAVIOR. HE HAS EMOTIONAL MELT-DOWNS OVER LITTLE THINGS THAT 1 YEAR AGO DID NOT SEEM TO PHASE HIM...
FOR ALL OF YOU OUT THERE WHO ARE GOING THROUGH THE SAME THING I KNOW HOW YOU MUST FEEL.
I FEEL YOUR PAIN.
SINCERELY, BRANDON
Thursday, February 10, 2005 6:54 AM CST
Monday, January 31, 2005 4:07 PM CST
Hello Everybody!
How many more hugs are you gonna send me?
I already have 116!
Thank you for all the hugs!
Love,
Bailey
Thursday, January 27, 2005 7:48 AM CST
Good morning!
It is a beautiful, sunny day here in New Hampshire with a new batch of snow covering everything. We love days like this!
Bailey is doing great! He is so pleased to be back at school this week and to be feeling well.
I had mentioned previously that Bailey has been having episodes of incontinence. We are starting a new medication which may help with that.
Recent lab results show Bailey's DHA level is very low. DHA is an essential omega-3 fatty acid and is a very important building block for nerve tissue. We will start a new supplement for this, as well.
Luckily Bailey has really gotten the hang of swallowing pills!
His list of daily medications is increasing and he just keeps on rolling with it!
Hope the sun is shining wherever you are!
Christine Robinson
Monday, January 24, 2005 4:31 AM CST
Good morning!
This morning we are back to our usual routine. Bailey will be going back to school, which he is so excited about. He has missed his friends and teachers so much!
He gave me a little smile and laugh when I told him some Pine Tree teachers had left messages on the web site for him. Thank you for that!
Over the weekend Bailey has fully recovered from this last illness. We had a nice, quiet weekend indoors with temperatures too low for racing around outside.
Saturday was a movie day and I think we will be finding popcorn in the livingroom for days. Saturday night we played the kids new favorite game 'Rummikub'. The Great Grandparents play this game so Todd and I are getting the children all set to give them a challenge when they visit this summer!
Of course we watched the Patriots game Sunday and our usual Extreme Makeover Home Edition Sunday night. Todd and I are great fans of this show. This weeks episode was especially moving to us. The family featured has a child with Krabbe's Disease, which is one of the Leukodystrophies. It was so wonderful to see because the Leukodystrophies are so unheard of! Possibly this episode, while helping the featured family, might also raise awareness to the family of diseases!
Thanks for the messages to Bailey and the family while he has been sick. We appreciate hearing from everyone so much!
Welcome to Chemistry 101
We want to share the results of Bailey’s monthly lab work, and in order for everyone to understand what the results mean, we’ll have a brief science lesson here.
The Peroxisome is a class of single-membrane-bound vesicles that contain a variety of enzymes. It is responsible for the breakdown of very long chain fatty acids.
In boys with X-Linked Adrenoleukodystrophy there is a defect in the Peroxisome, which causes the very long chain fatty acids to accumulate, rather than be broken down.
This, in turn, results in demyelination.
Myelin is the phospholipid-protein, or a protein fat, of the cell membranes of Schwann cells and the oligodendrocytes. Schwann cells are the white matter of the brain and spinal cord. This is the insulation to the nerve which speeds impulses. The Oligodendrocytes are the nerves the Schwann cells are insulating.
When very long chain fatty acids accumulate it is unclear how it causes the demyelination, but scientists are working to understand this process.
In the early 1980’s laypersons Augusto and Michaela Odone discovered that a glyceryl trieucate and glyceryl trioleate mixture (Lorenzo’s Oil) helped to normalize the very long chain fatty acid levels.
The concentration of very long chain fatty acids can be measured in the serum of the blood. For example a normal result for C26 (a fatty acid chain 26 carbons long) would be 0.24±0.14.
Bailey’s initial levels were at C26 1.060 and C24 97.6. After beginning the Lorenzo’s Oil and accompanying therapeutic diet he had a December level at C26 .410 which was really great progress. Unfortunately his January levels are C26 .430.
This may be due to the eight day long illness Bailey had in December when he was unable to keep all of his medications down due to vomiting, but we can never be sure.
I hope this explanation has been helpful, and if any scientists are reading this, please don’t critique our lesson too harshly!
Sincerely,
Christine and Todd Robinson
Wednesday, January 19, 2005 7:18 AM CST
This morning Bailey has stopped taking his stress dose of Cortef and is back to his normal ammount, so I will be closely monitoring him to see if he remains stable or has a resurgence of symptoms.
He still has a cough but that is about it for now.
Britta, however, has started coughing and has a horribly runny nose! Of course she is grinning and laughing away through it all!
Tonight I will be writing in this journal section of the web site about Very Long Chain Fatty Acids, how they effect Bailey, how they are monitored, and what Bailey's levels are at. It's too early for me to explain that science right now, so stay tuned!!
Hope you're all healthy and well.
Chris Robinson
Tuesday, January 18, 2005 5:06 AM CST
Bailey has been doing very well these last 24 hours. His appetite has returned, there has been no vomitting at all, and his temperature has remained normal.
Today he will go to see his Pediatrician and we may take him off the stress dose of Cortef and see how he does then.
It's been very busy around here with Bailey not feeling well, and Britta keeping us on our toes with her mischief. Brandon has been a huge help to me!
He has a pile of telephone messages that we have yet to return. As soon as things quiet down we will start on that task. It's amazing how little free time there is around here, right now.
We will keep you posted!
Monday, January 17, 2005 7:20 AM CST
Things are still up and down around here.
Bailey stopped drinking in the afternoon Sunday and started vomitting by 7:00.
Neither of the Pediatricians familiar with him were on duty, but luckily his Endocrinologist at Dartmouth-Hitchcock was.
We ended up administering his stress dose of Cortef by way of an injection.
Unfortunately he was never able to keep down his dose of Lorenzo's oil and there is no way to administer it other than orally.
This morning he was up early with Todd and seems to be feeling well.
We will just be careful not to let him over do it today.
We have a nice new batch of snow making the yard look so pretty and Bailey just wants to be out there in it.
Brandon and I will have to be very creative to keep him entertained inside today!
We'll let you know if anything changes!
Chris Robinson
Sunday, January 16, 2005 5:07 AM CST
Bailey has been doing very well since being released from the hospital.
He is drinking a lot and eating well with no episodes of vomitting at all.
We are so glad to see him get through this illness so well, and so quickly.
I'm sure he will be back to tearing it up on the ski slopes very soon!
Saturday, January 15, 2005 11:38 AM CST
Bailey has been released from the hospital and is resting comfortably on the couch.
He has full control of the television so life is pretty good for him right now.
He will stay home as long as he continues to drink lots of fluids and does not begin vomitting again.
This was the first hospitalization that Todd was home for, and since Britta joined our happy family.
It was funny figuring out which parent would stay overnight at the hospital and which would stay with Britta and Brandon.
Britta always wants her mommy, Bailey really wanted his daddy, and Brandon wanted whichever parent would allow him to stay up the latest!
Thank you as always for your support! We will keep you posted.
Friday, January 14, 2005 12:23 AM CST
Bailey has been admitted to the hospital for overnight observation.
He went in this morning and had lab work done and is receiving IV fluids.
All of his labs look good but his Sodium is a bit low.
He is the best patient and we have no reason to believe he will be staying at the hospital for long.
We'll keep you updated as time allows.
Thank you all for your support!
Friday, January 14, 2005 6:09 AM CST
Bailey is such a great patient. He really can not keep anything down, but he is focused on trying to stay hydrated. He knows staying hydrated will keep him out of the hospital.
His fever is 102.5 and he can not keep Tylenol down so I'll be looking for Acetominophen in a suppository form as soon as the rest of the world wakes up.
His Glucose level remains within the normal ranges whcih is good news!!
Bailey is disapointed that he may not attend school but just found out it is Dads day off from work and is happy about that. They will keep each other busy reading on the couch all day!
Thursday, January 13, 2005 11:22 PM CST
We were so busy having such a fun week a virus snuck up on us.
On Saturday Bailey was enrolled in the Buddy Bear ski program at Attitash where Todd works (job #3). It was Bailey's first time skiing and he did a great job! He has been talking about skiing nonstop!
We had a snow day Wednesday. I don't know who likes snow days more, the kids or I. Playing outside, friends over, and a lot of laughter.
Today was the first day of the ski program through Pine Tree School. I was lucky enough to go along and what a great day! It was cold, it was chaotic, but every kid had a huge smile on their face!
During the ski program today Bailey was fatigued earlier than I thought he would be. On the way home he complained of a sore throat. When we got home I could see his lunch box was mostly intact, so I thought we would go to the chinic where Todd works since it was already after closing hours for his Pediatrician.
Sure enough there was some fluid behind the ear drum. It was not infected yet, but given how ill Bailey becomes we started him on antibiotics anyway.
Very quickly he became sicker this evening and has woken up with a fever and vomitting. His Glucose level remains normal and he is trying to drink a lot so we will see what tonight and tomorrow bring.
Well, it is a poor end to a great week, but knowing Bailey he will think of some great fun for us to do quietly while he gets better.
More "Elfin" Activity.....
Those Elves never stop! Here are some more wonderful happenings in our lives.....
I cannot believe it! After missing our last chance for Bailey to meet Santa Clause at the mall before Christmas, due to Bailey being ill, Todd and I were SO upset.
Bailey has actually never met the red suited guy ever! It's funny how these things slip through the cracks, then one day seem so important.
Well, to our surprise Bailey CAUGHT Santa making his delivery to our home on Christmas Eve!
Bailey was all tucked in for the night when he apparently heard bells ringing and squealed "Santa's here! Santa's here!" Brandon told him it must be mom fooling them, but Todd and I were in our room! Bailey and Brandon tiptoed down the stairs and sure enough, there was Santa!
"Bailey, you're supposed to be in bed!" Santa scolded in a gentle way.
Well, two seconds later both boys were back in bed with the covers over their heads!
Thank you so much, Santa, for making one wish of Mom and Dads come true!
The Center Conway Methodist Church assisted Santa with his deliveries to the Robinson children this year. We are grateful for your generosity! You helped make three children VERY happy Christmas morning!
Sunday after Christmas was the best day for me! Todd, the kids and I did nothing but play games and watch videos all day long! No one was on call, no one had to work, nothing was more important but play! We needed that!
Winter break has been wonderful! I love having the children home from school and the more relaxed schedule it allows us. Thanks to all the friends who stopped by during vacation to visit. Bailey loves seeing you all so much! He has been writing in his journal about his vacation adventures and drawing lots of pictures.
Things are happening. Bailey has had some episodes of dizziness, he has often been stumbling, has increased the ammount of times he is bedwetting to practically every night, and has been losing control of his bowels while awake on occasion. His behavior is so unpredictable and erratic recently that we no longer feel he can be in any room of the house without constant supervision. That is where we are at and we will continue to update you all often.
Thank you so much to the folks who have been writing to Bailey. He has a recent interest in email and appreciates receiving it a lot!
With appreciation- Christine Robinson
Sunday, January 2, 2005 12:49 AM CST
Hi Everybody! Happy New Year!
Love,
Bailey
A Note about Santa and his Elves.....
Since things have quieted for the moment we want to take the opportunity to thank all of the thoughtful "elves" who have worked so hard to help our family celebrate the holiday season. Here are some things that have been happening:
We have been blessed by the generosity and kindness of friends and strangers alike. We are GRATEFUL!
A dinner was held at Center Conway Fire Department which earned money for a fund established to help with Bailey's medical bills. Having that fund to rely on when needed is the biggest relief to us! Local restaurants, grocery stores and businesses made this event a success! Friends we did not even know we had came to the dinner, lending their support. We were so moved by this! Thank you to the department and to the extra special "elf" who worked tirelessly to organize the whole event.
Partners In Health is an organization we are involved with which helps families with chronically ill children. Their coordinator is amazing! The organization held a Christmas Party for the families which was so fun! Some folks from Tin Mountain were there to help the children make beautiful ornaments. The most amazing part was that all food served was appropriate for the children with their varying dietary needs. How this was pulled off so well I do not know, but it was perfect, and such a joy to take Bailey out of the house to a party knowing all the food was safe for him. The extra effort meant a lot to me.
Bailey attends first grade at the Pine Tree School. I send him off to school each morning knowing he is in good hands. This is huge! His therapeutic diet is ESSENTIAL to his long term health. I send him off to school confident that he consumes only the foods which I have sent him. I know the teachers have enough to do and I am so thankful to them for helping with this especially. When there is a special event at school with food involved Bailey's teacher always makes sure I am aware of what the food will be so I may bring him in an acceptable alternative. This helps Bailey feel a sense of normalcy. I have recently learned that many boys on the same treatment program as Bailey are not able to attend school due to the parents belief that the diet will not be followed. I am so thankful that this is not an issue for us!!
Our small community has a great holiday spirit! The festival and parade in the village have been a favorite of ours since moving to the area. This year I thought we would not be able to attend. The baby was fussy with an ear infection and a rash. A good friend and colleague of Todds took Bailey along with them to the big event. Now, taking an extra child along with you for the afternoon may not seem like a big deal. It is where Bailey is concerned. His food options are so limited! Figuring what he can and can not have takes a science degree in itself I sometimes feel! This takes a lot of extra effort for the adult, but off they went. I knew he was in good hands. He even rode on a float in the parade! It was a fabulous day for him!
We don't travel much, most people know, but when you are invited to the North Pole by St. Nick himself, you pack up and go! All five of us took a magical trip to the North Pole and it was a monumental event! For one thing, all five Robinsons are rarely in one place at the same time!! Well, we managed to come together for this special adventure. It is a memory I will cherish!
It has been a special time for our family. So much sorrow, so much joy, and many important life lessons. Each day is precious, and also, precarious.
Blessings to your family!
Todd and Christine Robinson
Monday, December 20, 2004 4:54 AM CST
Bailey is doing super and will be going back to school this morning!!
It was a rough week for him, but he is feeling great now!
On Saturday we stopped administering his stress-dose of Cortef and went back to his normal daily dose and he reacted to this just fine.
He ate so well over the weekend and had a lot of energy and is as happy as can be to go back to school.
Thanks to everyone for checking in, for your positive thoughts and prayers, while we helped Bailey through his first crises of the season.
We appreciate the support more than we can say.
Now- on to the holiday fun!!
Friday, December 17, 2004 6:06 AM CST
I think we'll be back to business soon! Bailey is eating well and keeping it down. He is drinking a lot and trying hard to do his part in getting healthy. I admire him a lot.
I'm aiming for a return to school on Monday, and hoping for a few short trips out over the weekend. Bailey has not yet seen Santa! Hopefully we can get those two together!
Thursday, December 16, 2004 4:56 AM CST
Well, Bailey is still home ill, but this illness is still nothing compared to what he has gone through in the past.
He has been able to take his stress dose of Cortef orally and is keeping it down, but in the late evening he begins vomitting again. I do see some improvement, though.
He has seen his local Pediatrician on Tuesday and travelled to Dartmouth Hitchcock to see some members of his Pediatric Neurology team and they all agree he has your average childhood illness, and he is getting through it ok.
He is still staying hydrated and his energy is still up and down. He has lost about two pounds and has really no appetite.
What do we have now..... ten days to Christmas? Perfect! Todd will have to do all of the shopping, which will be great for the kids, as he is a much more generous toy shopper than I am.
Bailey and I will keep making paper snowflakes!
Monday, December 13, 2004 7:28 AM CST
Over the weekend Bailey has been afflicted with his first virus since being diagnosed with X-Linked ALD. With no warning at all he started vomitting and became listless.
Over the past year and a half when a vomitting illness occurred I'd be packing my bags for a stay at Dartmouth-Hitchcock Medical Center.
Well, I'm happy to report that the medication is doing its job. Bailey has maintained a normal Glucose level throughout this illness. He is working hard to stay hydrated, and I have no reason to believe at this point that we will have to be admitted to the hospital. That is a great relief!
Bailey is looking a bit pale and has intermittent bursts of energy, he is not eating very much, and he is quite mad at me for giving him injections, but he is handling that better than I expected.
Todd and I feel relieved to be able to keep Bailey home! We are keeping him comfortable and entertained.
We are also begining to see some humor in life these days. Why, we wonder, would we ever think it would be smooth sailing through the holiday season? That's just not the way it is around here, we laugh to one another.
We should have spent Sunday fighting traffic and other holiday shoppers looking for that "perfect gift". Rushing from store to store.
Instead Bailey, Brandon and I spent Sunday on the couch making paper snowflakes and watching my collection of Christmas Cartoons. It looked like a snowstorm had hit our livingroom by the end of the day! It was the nicest afternoon I've had in a long time.
Chris
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