Emergency Room

Hello Ben...goodbye Ben.

(Steve just returned from Utah late last night and barely got to see Ben before we were off)

Here is the arm that is swollen. On the way here, Ben developed a blistery rash all over the trunk of his body and on the arm that is swollen. (see up by his armpit?)
The rash actually looks a lot redder in person than on camera. Here are some of the spots on his trunk.
An hour later he is still continuing to blister, this time where the diaper touches his legs. It's on both sides but I only took a picture of the one side.

At this point we have been here 90 minutes. We've seen the ER doc who is passing us off to a dermatologist for now. The rash is distracting them from figuring out what is going on with his arm. First they want to find out why he's reacting so suddenly to contact to his skin. I'll update as I find out things.

Decisions

I know this is blurry, but you can see the marks left by the foley cath on his belly. Those are old blisters.

With a child like Ben comes many decisions and challenges. The latest involves his bladder. Ben has what is called a "neurogenic bladder". His brain does not communicate properly with his bladder resulting in "urine retention" and other issues. Because of this his urologist started him on a medication called "ditropan". This helps relax the muscle allowing him to pee as needed. We also cath him at night. The "foley cathetars" that stay in all night are made of silicone. They used to be made of latex, but most kids that need to be cathed are "latex allergic" and so silicone seems to be one of the materials that are safe. My child happens to be the exception. For over a year now Ben has had a lot of issues regarding these caths. His skin blisters if the cath comes in contact with his belly, and he bleeds and has some discharge from having contact on the inside. The up side of all of this is that his bladder looks almost normal via scan after being on the meds and being cathed. His life seems more comfortable. (except for the allergic reaction to the caths) We visited an allergist the other day and his recommedation was to get "patch testing" although he feels like the blistering of the skin is evidence enough that he is allergic. He also feels like we should stop using the caths. The problem? We have not been able to find any company out there that make "latex free" or "silicone free" foley cathetars. He needs to be cathed in order to keep his kidneys safe and his life more comfortable. The urologist talked to me about a possible procedure that might do away with having to be cathed at all. He would go in and cut the muscle that holds the pee in your bladder. If he did this then Ben would just slowly leak urine into his diaper. Sounds great, right? Maybe. The down side to this is that he might have irritation from being exposed to urine 24/7. His skin is so sensitive that there is a chance his skin could break down causing major problems. The "non-permanent" solution would be to inject botox into that muscle which would paralyze it causing the same effect. (slowly leaking urine into his diaper) If we went with this (which we will probably atleast try) then we will know if his skin will have issues or not. The affect of the botox lasts anywhere from 6 weeks to 6 months. Depending on how his skin looks as a result of the botox will help us decide what we need to do.

"Make A Wish" Cruise

Our family had the privilege of spending an evening on the Mount Washington with other Make A Wish kids and their families. It was our chance to thank the donors who make it possible for special kids like me to experience once in a lifetime experiences. They do cool stuff, like invite Storm Troopers to sail along with us.
Mom and me checking out the water from down below. It was too cold for me up top.
My brother Kaleb and my mom.
My cute brother and lovely sister Kayla.

The afternoon was beautiful. We had such a great time. Thanks again Make A Wish!

You can read all about it from the local newspaper!

MAKE A WISH

9/11 Visit to the local Firehouse

In honor of those who died during the tragic day of 9/11/01, our family brought some yummy cinnamon rolls to the local fire and police department. As a treat to our family, the fire department gave us a tour of their firehouse.
My silly sisters
Mom and I checking out their cool trucks.

CHaD Golf Tournament

Mom, Stevie and I represented all CHaD families at a local golf tournament to raise money for CHaD. It was a great afternoon with beautiful weather. Here are some pictures from the day.

Nobody can resist kissing my cheeks!
I got a little tired from the long day...
Mom sneaking in a few smooches.
Hello world!

Kadee Lynne Orton

This is a picture of my baby sister. She lived in my mom's belly for 20 weeks.
This is a bush we planted to remember her by.
These are my baby sister's hand and feet prints. Aren't they so precious?

Heaven's Very Special Child

HEAVEN'S VERY SPECIAL CHILD

*****

A meeting was held quite far from Earth!

Its time again for another birth.

Said the angels to the Lord above,

This Special Child will need much love.

His Progress may be very slow,

Accomplishment he may not show.

And he'll require extra care

From the folks he meets down there.

He may not run or laugh or play;

His thoughts may seem quite far away.

In many things he won't adapt

And he'll be known as handicapped.

So lets be careful where he's sent.

We want his life to be content.

Please, Lord, find the parents who

will do a special job for you.

They will not realize right away

The leading roll they're asked to play.

But with the child sent from above

Comes stronger faith and richer love.

And soon they'll know the privilege given

In caring for their gift from Heaven.

Their precious charge so meek and mild

Is Heaven's Very Special Child.

*****

by Edna Massimilla

Physical Therapy

I love Ben's physical therapists. Ben has had a few over the years and we grow so close with them as they come into our home and bond with both our son and our family. Denise has been Ben's PT for the past 31/2 years and we just love her to pieces!
Stretching muscles on our living room floor
Denise at school with Benjamin
Doreen was with us for a few years and we miss her so much.
This was Ben's very first PT Debbie. She was fantastic and sorely missed when Ben graduated from the Early Intervention program.

The Brave Little Soul

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, 'Why do bad things happen; why is there suffering in the world?'God paused for a moment and replied, 'Little Soul, do not be sad, for the suffering you see, unlocks the love in people's hearts.' The little soul was confused. 'What do you mean,' he asked. 'God replied, 'Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.'The little soul began to understand and listened attentively as God continued, 'The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle - for the good of all humanity.'Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, 'I am brave; let me go!! I would love to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!!'God smiled and said, 'You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.'God and the brave little soul shared a smile, and then embraced. In parting, God said, 'Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.'Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. People checked a website and sent notes of encouragement. People made and brought meals to the family of the suffering. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased ......
(By John Alessi)

6th Birthday

6! Can't believe my boy is 6! It makes my heart sing, my legs dance and my lips kiss (his cute, chubby cheeks of course). The Billins invited us over for yet another birthday party. I've learned to keep them low key for the sake of Ben and his apparent fear of LARGE PARTIES!:) Becky Billin (Ben's 2nd mother) made Ben his cake and adorned him with lots of bibs. (these are a necessity with my drooly boy)
Balloons for the birthday boy.
See all my rockin' bibs?
Steve took a picture of Becky in mid-bite. We love you Becky and are so glad you are in our lives!!! (we love your family too.:))