Monday, September 27, 2010

False Hope n Helpless Feeling

So I'm stuck in this funk. I have this feeling of anxiety and helplessness. The whole one step forward and three steps back, grrrrrr. I can't help to look at those beautiful blue eyes and those cheeks and wonder......does he understand why? Can he possibly Love me with all that I have put him through. My heart aches the last few days. The fear of the unknown into the future and the feelings of despair from the past. To know that your child WON'T walk on his own, will NEVER eat by mouth, or CAN'T say Mom, is enough for a mother to take.....But as long as he is comfortable and happy right? Well I can't even achieve that for him and I just ache. It's one thing after another with my Sweet Boy. To know that your child has some sort of chronic discomfort darn near his whole's killing me. I'm suppose to make it all better, but I just can't. I hurt for my Lil Man. He cries, I cry.....I wish I could hurt when he hurts. Why does he have to go through more? When will the pain end? Where am I going wrong? How can I fix it? These are all questions I play over n over in my head everyday all day. I feel like I'm going insane some days. I hurt! The emotional pain is so mind boggling, I do so much better with the physical pain as then I can control it, to hurt so much inside and there's nothing you can do about it, sigh. Then to put on this face of "everything" is going to be alright. Will it? When? Then I find myself looking to years past of what's all happened to my sweet wonderful boy and I get angry at it all. Wondering how can he put that handsome smile on his face with everything that has happened to him. I really hate myself when I feel like this. I just want to scoop him up and run far far away. What to do? What's a quality of life? How does one achieve it? Who's quality is being considered? I'm just ill with emotions I'm suffocating in decisions. What's right ~ What's wrong ! Do you allow your child to be in pain to relieve him of another surgery? Do you increase pain meds so that when he builds a tolerance you keep upping the dose and in turn kill off/ damage more organs so he doesn't have surgery? Do you do surgery in hopes that "this time" it will take away the pain? Will the back steps from surgery be only temporary this time or will his system say enough is enough? Will this surgery take away the pain or will ANOTHER issue pop up after this one? It's bad enough he needs to undergo more surgeries just to maintain the hardware he already has on an ongoing basis. Does he understand that this is all for his own good? Does he just hate me for it? He can't even be picked up at times without him crying ...what kind of quality of life is that? How can a mother comfort her son when it hurts him to be moved? I'm just beside myself and overwhelmed. I do know it will all turn out but right now the decision making is brutal. I have to continually decide if my son should go under the knife time and time again when most parents might have to have there kids tonsils removed. I'm broken right now and I'm just trying to picking up the pieces. I have emails into some of Danny's doctors to get their insight to help me. I "think" I know what the next steps are already, but I just have to talk it through. These are no easy choices to make and my gut is telling me it's only going to get harder.
Once again I have another water feature inside my home. Looks as if the roof is leaking AGAIN. I'm just overwhelmed and amazed. One part of my just wants to choke someone and another says F*&$ it. I'm so DONE with it! But unfortunately it's just beginning AGAIN. I can only imagine what behind the walls and in attic look like. Once again I can only assume, as I'll be damned if I'm going up in the attic to check, that the water has saturated the insulation, wood, and drywall so now it's leaking through the ceiling and onto the hardwood floor. I might lose my mind with this house. If it wasn't such a good thing for Danny I swear I would move in a heart beat. It was designed and built to make our lives easier and all it's become is more DRAMA and work. Right now I HATE this house!
It's just another looks can be deceiving it/we may look like we/it have it together but inside we're/it is just falling apart. NEVER just a book by it's cover! Amazingly with all that I've been dealing with I've kept my symptoms at bay...for now. Sigh
Today Avrianna goes in at 3pm to have her hardware put on. She's still thinking this is going to be "cool", but my gut says around 4 pm this is not going to be neat anymore. We'll see how it goes and maybe I'll be able to get some before n after pics if she lets me. Wish her luck!
Thanks for stopping by to check in on us...sorry for the deary post but I'm hoping that now that it's out I can feel better. It never hurts a girl to dream

Saturday, September 18, 2010

I get the award for worst blogger, I swear! I have great intentions and then the week gets away from me. I know I keep saying this, but I WILL get back in the swing of it soon.....I promise :)
Avrianna started her first week back at the swim team. I'm so proud of her, she is doing so well. Her first meet is mid October here at the Neenah High School. We are all excited to see her at the meet.
I took Avrianna to her first orthodontist consult on Monday which turned out to be her first appt by the time we were done talking. She indeed needs some oral work done. They molded her for a palette expander for her small upper jaw n over bite. The expander will also have a "fence" added to the front of it to help prevent the significant tongue thrust she has. The expander is a bracket that is installed on her palette which will gradually expand her upper jaw not only to improve her over bite but to make more room for her adult teeth to come in. Avrianna was pretty excited to get them UNTIL the whole process started. The spacer bands were put in and I don't think they felt every well. She wasn't too excited about the mold process either but she handled it very well. After the RULES of what she can and can't eat were laid out I could see the sparkle leaving her eyes. She'll be a trooper ... it's all for the better to get things aligned now rather then later in life. This Monday the metal brackets will be put around her back teeth for the expander to be attached on to, the following Monday. So in alil over a week all the hardware will be installed, we'll see how it goes.
I learned a VERY IMPORTANT lesson last Thursday....... remove your foot from the route of the wheelchair ramp when raising it up. Foot vs Wheelchair RampVery Swollen and pretty painfulA week later the swelling has gone down some, the colors are just beautiful, and the aches n pains are still there.
The moral of the story is the ramp will always win :( I did go in for xrays and I didn't break anything surprisingly (guess I'm "lucky"). The doctor was very surprised that nothing did break, but it was VERY bruised.
I wanted to do something to honor my family.... throughout our home I have many things that have the four hearts that come together so I thought what a great idea for a tattoo.
So the orange MS peace n love heart for me, the pink (her birthstone) heart with '02 in for Avrianna, the dark blue with '01 for Dan (for his birthstone and our wedding month), and the light blue (his birthstone) with the wheelchair for Danny.
Our families emblem
I added Avrianna's foot print from birth and Danny's foot print from his birth.
Phase 1 onto phase 2 :)

More of the wildlife hanging in our yard, so cool.
Now if could get them to STOP eating my trees, LOL
The other day while Avrianna and I were out waiting for the bus there were some "hunters" trying to get some geese. Well a few seconds after I heard a few rounds go off Avrianna and I started to get rained on by bb's. OMG the morons are shooting in our direction!! Well no one got hurt but it really freaked out Avrianna as I grabbed her and put her in front of me as I didn't know at that time where they were shooting from for sure and I didn't want her to get hurt if they were too close. Once I got home I called over to the house where I saw them shooting from to discuss with them that it wasn't a good idea to be shooting in the direction of residential homes, grrrrrrrrrrrrrrr.
On the Danny home front things are still unknown, but stable. The upper GI came back "normal" so we're not sure as to what's going on with his feeding problems. The newest "theory" is it's still his dysautonomia playing around and he's just going to need more time to bounce back. I'm awaiting to hear what the doctors have to say about everything. I hope to hear from some of them....any of them soon. School therapy and his private PT therapy are back in FULL swing and I'm very excited to see what this year will bring to Danny and his abilities :)
Thanks for stopping by to check in on us!

Thursday, September 9, 2010

SMA syndrome

During Danny's GI follow up appt that we had on Tuesday..... I think we've added another line in his forever growing list of diagnosis. We were discussing with the GI doctor our concerns that since the last surgery (the VEPTR revision) Danny will no longer tolerate his volume of food, he has been having GI bleeds (unknown from where, we're just getting blood clots coming back when we vent him), he gets very uncomfortable when feeding him his bolus feeds during the day, and he has alot of bile residual after feeding him. "Very interesting" is what the doctor had told me, so I thought "great another mystery coming from Danny". BUT then he went on to say this is text book symptoms for SMA syndrome (Superior Mesenteric Artery Syndrome). In easy language ... due to the extreme correction from his VEPTR rods and the loss of weight his anatomy is now pressing up against the main artery feeding into his stomach so it's not working properly. This is a VERY rare (would you expect any different from Danny) and could be life threatening disorder, BUT because this a an acute form (meaning Danny's body is doing this because of something) not a Chronic (meaning his body was "built" that way) we are hoping this is not too serious. Ok let me if you google it to get more info or watch some of the youtube video's you're going to freak the scheme of Danny and because this was diagnosed early it should be controllable. We are heading down to CHOW on Monday so Danny can have an Upper GI done to confirm but the Doctor would be very surprised if Danny doesn't have it. SMA syndrome is VERY common to get after scoliosis surgery and because Danny had such great correction of his curve in the first shot (he gained 5" when all was said and done) and he's getting so skinny, the doctor says he can almost guarantee this is what's going on. I'm relieved that all Danny's issues are happening for a reason and a reason that we know why, BUT really?!? It's always one step ahead and 3 backwards, my heart just aches with all that Danny has to endure EVERY DAY OF HIS LIFE. What I wouldn't give to be able to take it all for him :*( What we ALL take for granted!
Our options so far for making this "better" are......
1. Danny will need to be on the feeding pump continuously so he'll have small volumes of food going through. If this doesn't work then
2. Trying to put pounds back on him to where the artery is cushioned once again, but with the height he has now it could mean ALOT of weight. He nor I want more weight ~ Bad option!
3. To try the GJ tube again......NOT an option as the last two attempts were failures due to Danny extreme sensitivity........SO that would mean he would to have a surgical placement of just a J tube to see how that goes. BUT then we go to dealing with med absorbing issues. Because if you go to J,( for some of you that are not "in" with the medical aspect of all this, LOL)......J tubes is like his G tube but instead of it going directly into his tummy like the G it will go directly into his intestines. That in turn gives a small window of time to absorb/digest medications. Not too mention another surgery, but this is an option.
4. I've been told there are possible surgical procedures for this, but I'm not sure what is all involved or how complex they are yet. Again another surgery, grrrrrrrrrrr.
Well I'm NOT impressed with his options BUT yet again Lil Man has hit a pot hole in life so we are going to have to see what are all his options that will continue to keep his best interest and quality of life at hand. All I know he is going to be pretty much stuck to a feeding pump all the time now, which I'm kind of bummed about....but we'll get by we always do.

Monday, September 6, 2010

Finally updating

Sorry for the lack of updates from us. I had really thought I would have more time to blog once school began but I've been catching up on paperwork and projects around here. Avrianna is officially a 3rd grader. WOW! One week under her belt and all is good. She's adjusting to a new class, new teacher, and new classmates very well. Danny will be starting up his therapies this week I'm very excited to get back into the routine for Danny. Enough sluffing off, LOL. Danny will continue to get Speech, OT, PT, Vision, and the teacher all done here at the house. I can't wait for them all to see him and all the changing he's gone through this summer. Once again the summer was a rough road for The Osero's, but we seem to been on the right track........for now. The only real hiccups around here are.
Danny's right hip is now completely dislocating itself multiple times a day, sigh. It's very frustrating! A dislocated hip causes him some significant discomfort when it's out, but he seems to calm down once I put it back in, NOT one of my favorite things in the world to do ~ I can tell you that. Danny still isn't totally back to his normal feeding regimen but we are always up new regimens. He still has some blood clots that come out when I vent his tummy so I know things are still not up to par in his GI tract yet. Tomorrow he has a GI follow up appt here in Fox Valley so it'll be nice to get the doctors perspective.
Avrianna had three more cavities filled in her teeth. Once again they came in with the cavities as her teeth are very pitted, grrrrr. I was really hoping she wouldn't have my teeth. She even managed to get to cavity in one of her teeth that already was sealed. I'm VERY proud of her as she had all three cavities filled without gas or Novocain. No tears and No NOT her mother! She is going to be seeing an orthodontist next week for braces. She has a severe lower under bite, upper over bite, and her pallet is quite high. GO figure! I'm not sure how it all works but I hear today's day n age is alot different when it comes to bracing teeth. We'll see where this road takes us. At least, for now, she is excited to have braces. But I don't think it will last long, heehee.
Dan performed open heart surgery on "Big Red" this last week. So now the big red truck should run better and hopefully longer. His excuse is that now Avrianna needs braces so he has to keep it running....LOL. I think it's because he can't get himself into getting rid of "her". They've been through alot you know, there's a history.
I had to go on oral baclofen for my MS. My legs n feet were getting pretty spastic, to where my right leg is turned in when I walk. Dan always asks if my hip hurts as it looks like it would walking they way I do now. I notice I walk differently but I can't say it's more uncomfortable at night when I'm laying in bed trying to unwind n relax and my leg muscles are still tight. Grrrrr! I just keep adding more notches to my .... "that's what Danny goes through" experiences, sigh
Today we had a fun art project day .... out came the paints and we all got dirty. We did hand prints making bats, pumpkins, and leaves. Then off with the socks to make ghosts. I can't believe how well Danny did with paint in his hands, Aleana actually got great hand prints of him. That is no easy task! Lil Man definitely expressed his lack of enthusiasm a few minutes after the paint hit his hands, LOL. The boy doesn't like to be messy, but he'll get over it.

Thursday, September 2, 2010

The Power of the Powerless

I found this story on a blog that I follow....Very Moving. I'm dedicating this post to My children and to all the siblings out there that have a disabled sibling. The road is not always the easiest but YOU are a better person for having this "special" person in your life.

THE POWER OF THE POWERLESS – by Christopher de Vinck

I grew up in the house where my brother was on his back in his bed for thirty-two years, in the same corner of his room, under the same window, beside the same yellow walls. He was blind, mute. His legs were twisted. He didn’t have the strength to lift his head or the intelligence to learn anything. Oliver was born with severe brain damage which left him and his body in a permanent state of helplessness.

Today I am an English teacher, and each time I introduce my class to the play about Helen Keller, The Miracle Worker, I tell my students the story about Oliver. One day, during my first year of teaching, I was trying to describe Oliver’s lack of response, how he had been spoon-fed every morsel he ever ate, how he never spoke. A boy in the last row raised his hand and said, “Oh, Mr. de Vinck. You mean he was a vegetable.”

I stammered for a few seconds. My family and I fed Oliver. We changed his diapers, hung his clothes and bed linens on the basement line in winter, and spread them out white and clean to dry on the lawn in the summer. I always liked to watch the grasshoppers jump on the pillowcases. We bathed Oliver, tickled his chest to make him laugh. Sometimes we left the radio on in his room. We pulled the shade down on the window over his bed in the morning to keep the sun from burning his tender skin. We listened to him laugh as we watched television downstairs We listened to him rock his arms up and down to make the bed squeak. We listened to him cough in the middle of the night. “Well, I guess you could call him a vegetable. I called him Oliver, my brother. You would have loved him.”

One October day in 1946, while my mother was pregnant with Oliver, her second son, my father rose from bed, shaved, dressed, and went to work. At the train station he realized he had forgotten something, so he returned to the house and discovered the smell of gas leaking from the coal-burning stove. My mother was unconscious in her bed. My oldest brother was sleeping in his crib which was quite high off the ground so the gas did not affect him. My father pulled them out of the room, through the hall, and outside where my mother revived quickly. And that was that.

Six months later, on April 20, 1947, Oliver was born. A healthy-looking, plump, beautiful boy. “Oliver seemed like any other newborn,” my mother and father told my sisters and brothers and me over the years, as they repeated the story with their deep love and joy. “There was no sign that anything was amiss.”

One afternoon, a few months after he was born, my mother brought Oliver to a window. She held him there in the sun, the bright good sun, and there Oliver rested in his mother’s arms, and there Oliver looked and looked directly into the sunlight, which was the first moment my mother realized that Oliver was blind.

My parents, the true heroes of this story, learned with the passing months that Oliver could not hold up his head, could not crawl, walk, sing; he could not hold anything in his hand; he could not speak. So they brought him to Mt. Sinai Hospital in New York City for a full series of tests to determine the extent of his condition.

The only explanation anyone could agree upon was that the gas, which my mother inhaled in her sleep during the third month of her pregnancy, had reached Oliver and caused the severe, incurable, hopeless condition before he was born.

At the end of a long week of waiting, my parents returned to the hospital and met with the doctor, Dr. Samuel De Lange.

When our children are in pain, we try to heal them. When they are hungry we feed them. When they are lonely we comfort them.

“What can we do for our son?” my parents wanted to know. Dr. De Lange said that he wanted to make it very clear to both my mother and father that there was absolutely nothing could be done for Oliver. He didn’t want my parents to grasp at false hope. “You could place him in an institution?” “But,” my parents answered, “he is our son. We will take Oliver home, of course.” The good doctor said, “Then take him home and love him.” That was sound medical advice.

Dr. De Lange speculated that Oliver would probably not live beyond the age of seven or eight; he also suggested that Oliver be taken to another neurosurgeon to confirm the diagnosis. This is what my parents did and, yes, the second doctor repeated the first verdict; Oliver’s case was hopeless.

While he scanned the forms my parents filled out, the second doctor noticed that both my mother and father were born in Brussels, which led the doctor to say, “During World War II my parents were taken in, fed and protected by a Belgian family for we are Jews. Now it is my turn to help a Belgian family,” and the doctor didn’t charge my parents for all the tests, the care and medication.

I never met these two doctors, but I loved them all my life as a child loves the heroes in a fairy tale.

Oliver grew to the size of a ten-year-old. He had a big chest, a large head. His hands and feet were those of a five-year-old, small and soft. We’d wrap a box of baby cereal for him at Christmas and place it under the tree. We’d pat his head with a damp cloth in the middle of a July heat wave. His baptismal certificate hung on the wall above his head. A bishop came to the house and confirmed him.

Oliver still remains the most hopeless human being I ever met, the weakest human being I ever met, and yet he was one of the most powerful human beings I ever met.

As a teacher, I spend many hours preparing my lessons, hoping that I can influence my students in small, significant ways. Thousands of books are printed each year with the hope that the authors can move people to action. We all labor at the task of raising our children, teaching them values, hoping something “gets through” to them after all our efforts.

Oliver could do absolutely nothing except breathe, sleep, eat, and yet he was responsible for action, love, courage, insight. For me, to have been brought up in a house where a tragedy was turned into a joy, explains to a great degree why I am the type of husband, father, writer and teacher I have become.

I remember my mother saying when I was small, “Isn’t it wonderful that you can see?” And once she said, “When you go to heaven, Oliver will run to you, embrace you, and the first thing he will say is ‘Thank you’.” That leaves an impression on a boy.

Of course it is I who must thank Oliver and my parents for defining for me the boundaries of love which were the house, the yard, the woods where my sisters and brothers and I ran in and out all day long, the fields where we ice-skated in the winter and caught snapping turtles in the summer, and all the time Oliver laughed and slept between his fresh sheets, under the window day after day.

I remember, too, my mother explaining to me that we wore blessed with Oliver in ways that were not clear to her at first. We were fortunate that Oliver’s case was so severe. The best we could do for him was feed him three times a day, bathe him, and keep him warm. He did not need us to be there in the room all day. He never knew what his condition was. We were blessed with his presence, a true presence of peace. So often parents are faced with a child who is severely retarded, but who is also hyperactive, demanding or wild, who needs constant care. So many people have little choice but to place their child in an institution. Each circumstance is different. No one can judge.

I have come to believe we are here to tend to the lilies of the field. We do the best we can. If you have a boy or girl like Oliver in your home, you will know what is best for him or her, for your family. The decision is never easy.

I asked my father, “How did you care for Oliver for thirty-two years?” “It was not thirty-two years,” he said “I just asked myself ‘Can I feed Oliver today?’ and the answer was always, ‘Yes I can’.” We lived with Oliver moment by moment.

I remember once when I was a little boy sitting down beside my brother. I was alone in the house, and l wanted to see if Oliver was really blind, if he was faking it, so I spread my right hand over his face and shook my fingers close to his open eyes. Of course he did not blink, did not move. His eyes were brown, like mine, yet so different.

Often it was my job to feed Oliver supper: a poached egg mixed with cereal, warm milk, sugar, a banana. Yuck, I often thought I wouldn’t eat this stuff. Feeding Oliver throughout his life was like feeding an eight-month-old child. His head was always propped up to a slight incline on pillows. A teaspoon of food was brought to his lips. He would feel the spoon, open his mouth, close his mouth, and swallow. I still, today, can hear the sound of the spoon ticking and tapping against his red bowl in the silence of his room.

” ‘Oh, Mr. de Vinck. You mean he was a vegetable’.”

When I was a child I was afraid of the dark and shared a room with my younger brother. Our room was separated from Oliver’s room by a single wall. Five inches of wood and plaster divided us from each other during the night. We breathed the same night air as Oliver did, listened to the same wind, and slowly, without our knowing, Oliver created a certain power around us which changed all our lives. I cannot explain Oliver’s influence except to say that the powerless in our world do hold great power. The weak do confound the mighty.

When I was in my early twenties I met a girl, and I fell in love. After a few months I brought her home for dinner to meet my family. After the introductions, the small talk, my mother went to the kitchen to check the meal, and I asked the girl, “Would you like to see Oliver?” for I had, of course, told her about my brother. “No,” she answered. She did not want to see him. It was as if she slapped me in the face, yet I just said something polite and walked to the dining room.

Soon after, I met Roe, Rosemary, a dark-haired, dark-eyed, lovely girl. She asked me the names of my brothers and sisters. She bought me a copy of The Little Prince. She loved children. I thought she was wonderful. I brought her home after a few months to meet my family. The introductions. The small talk. We ate dinner; then it was time for me to feed Oliver. I walked into the kitchen, reached for the red bowl and the egg and the cereal and the milk and the banana and prepared Oliver’s meal. Then, I remember, I sheepishly asked Roe if she’d like to come upstairs and see Oliver. “Sure,” she said, and up the stairs we went.

I sat at Oliver’s bedside as Roe stood and watched over my shoulder. I gave him his first spoonful, his second. “Can I do that?” Roe asked. “Can I do that?” she asked with ease, with freedom, with compassion, so I gave her the bowl, and she fed Oliver one spoonful at a time.

The power of the powerless. Which girl would you marry? Today Roe and I have three children.

Christopher de Vinck is the author of The Power of the Powerless published by Doubleday and reissued by HarperCollins, and two books of essays: Only the Heart Knows How to Find Them (which won a Christopher Award) and Songs of Innocence and Experience, both published by Viking.

I am A Child (Author Unknown)

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of — I see that as well. I am aware of much, whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world’s standards — great strides in development that you can credit yourself; I do not give you understanding as you know it. What I give you is so much more valuable — I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I’ve dropped my fork again. I am dependent on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don’t learn easily, if you judge me by the world’s measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Danny Osero