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Sunday, February 26, 2006

Trying to catch up on laundry, nothing new here except that I started a fire in my dryer and this requires me to haul everything to the laundrymatt. Boy, gotta love that. Do you think I could get anyone to help me with this. Big joke. I just stopped washing their clothes and then it makes less for me to haul. I get a few comments that are like, have you seen any clean underware for me? My response is usually, NOPE. (hehehehe) He thinks he has me pegged because he will say something like, I thought you just washed clothes, and my response is, I did, but I did Forrest's, not ours. Then I get the big OOOOOOOOHHHHH. It's not fair, I know it, but I really don't give a hoot anymore. As long as I have clean underware and scrubs, I don't care.

It reminds me of a funny little story of last week. Mike asked me if I knew where any clean underware are of his after he got out of the shower. This was after he spent the weekend ice fishing with the guys. He's sitting in a towel and we needed to go some where. I told him I thought there was a pair in the clothes basket with the clean clothes, but I could not find any. Well what happened was I spent all day washing all of our clothes up and I washed all the underware, but he was supposed to be helping me dry them at the laundrymatt and all of his underware were wet and waiting to be dried. I went down to the basement to see if there were any spare pair floating around that were clean. All I could find was a small pair of the little boy underoos,(spiderman or superman). I put them in my pocket and then found a pair of the older boys boxers. (Little tip, Mike does not wear boxers). Got upstairs and he asked if I found any and I said yep, then I threw the underoos to him and started laughing. I said it's that or comando you have to go. He said, it's not safe to go comando when you are a guy. I said then wrap up the boys with the underoos and let's get going. The look on his face made me fall down while I was laughing. So then I gave him a pair of the boxers and we went to finish the laundry. Got home and asked him what underwear he used, and he said he tried the underoos, but they just cut the circulation to his legs off so he wore the boxers. I can just see him trying those babies on after I left the room.(hehehehehehehe) Gotta have humor, or you don't have nothing in a relationship.

Well, gotta go and do more laundry. I will be back soon

Love,

Me

Posted by Neaker Girl :: 2/26/2006 08:42:00 AM :: 2 comments

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Monday, February 20, 2006

Monday, Monday

Just getting ready for the wonderful world of work on Monday. Started warming up a little and thats a relief. Didn't get everything done this weekend except I think I finally caught up on my sleep a little. It was well needed. Kurtis is off this week and finally took the Christmas stuff down last night. (wow, I think it was ticking him off)(hehehehehe) otherwise he has something else in store for me this week. Well gotta go, have a great one.
Love,
Me

Posted by Neaker Girl :: 2/20/2006 06:10:00 AM :: 1 comments

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Saturday, February 18, 2006

It's Saturday

Let's talk cold, I can't believe that it is now as cold as it is. All you have to do is stick your head out the door and it F R E E Z E S instantly!!!! It's insane! Been busy, had to take the little man to work with me on Wed. And boy that was a fun thing. I really think that I need to have it out with the city about areas being handicapped accessible. Myself and the bus driver had to push Forrest's wheelchair up and over a snowbank and curb so that we could get him on the bus. The bus driver was so apologetic and took down my name and number because he was going to raise hell with the city also. Well today I am going to take it easy and go and play in dart tournaments with Mike. It's just so cold out that I don't want to go outside to start the car (hehehehehe). I did notice that my auntie lost my picture, but there is nothing wrong with the one that she had drawn. Hope everyone is staying warm and comfortable. Have a great day!
Love,
Me

Posted by Neaker Girl :: 2/18/2006 08:59:00 AM :: 0 comments

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Wednesday, February 15, 2006

another day

Today started off great because my morning nurse called in. Today of all days is not a good one for me, I have to finish up my in service training with all my staff this after noon and I have to finish up three reviews. Ohhhh Well, the little man is excited to have mom home and his nurse today, but just wait, Mike will have to get up soon and be the nurse. Otherwise, everything else seems to be ok today. Not much more happening. Waiting for the cold snap to arrive. Starting to feel like it already. Have a great day.
Love,
Me

Posted by Neaker Girl :: 2/15/2006 05:00:00 AM :: 1 comments

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Saturday, February 11, 2006

The Little Man's B-day

Well, the little man decided that he wanted to go bowling today, so off we will be going shortly to celebrate his 14th birthday. We have to take the bus, I hate that because it is so cold out and people in this town don't know how to shovel their sidewalks. His wheel chair is a power chair that is about 450 pounds, and if it goes out of control, well needless to say, I am in for an interesting rebound. (hehehehehe) Hope everyone is doing well and I will be back later.
Love,
Me

Posted by Neaker Girl :: 2/11/2006 08:29:00 AM :: 1 comments

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Friday, February 10, 2006

Little Man

Children are gifts from the heavens above and handed down to parents to care for, guide, love, and cherish throughout life. Expectant parents have many things to prepare for and to understand. Mostly, they have dreams and expectations that they want their children to fulfill as they grow. Some parents want their children to grow up and become teachers or firefighters. Most parents want their children to grow up loving themselves and believing in where their own abilities can take them.
You and your husband start preparing for the most wonderful and delightful event in your lives. A child is coming soon, and many things need to be done. You start picking out names for this child, and start painting or fixing up a bedroom for the child to grow up in. You start stocking up on the diapers, diaper wipes, and baby food. You can feel movement and begin to daydream about the coming months. How will this all happen? What will happen with your child? Will your child love you and your husband the way you both love this child now? What will this child look like? Will this child be a girl or a boy? There are many questions that you both have, and many things that you’re wondering about. The nearer the time comes, the more the anticipation and excitement starts to build for you and your husband.
At last, the time has come for this child to enter your world. There is much commotion, and everyone’s adrenaline is soaring. After 96 hours of labor, the doctor says just one more push and the baby will be here. You’re exhausted, but you still push with all your strength. All of a sudden, the child is here! Wow, the moment has finally come and everyone seems relieved that the birth is over, but there is a problem! You’re lost in the confusion that has just begun. You take notice to the baby, it’s a boy! This makes boy number four, but he is floppy and unresponsive to the entire world. There are doctors and nurses everywhere. The baby is not crying, and you and your husband are both trying desperately to get answers. The doctors and nurses whisk the child away in an incubator while working with everything they have to get this child to breathe.
In what seems to feel like a lifetime, but is only a few moments, the doctor returns to inform you that your child is ill, and they don’t know what is wrong. The doctor is speaking in terms that you can’t understand, but all you can really comprehend is the word “stable” at this time. Everything begins to become a huge blur to you and your husband; doctors and specialists are trying to explain what is happening. Your mind starts drifting into the past, the past that you don’t want to think about. It’s like you’re reliving the death of your third child all over again. How can this happen again?! The doctors told you that the first time was like lightning striking, and lightning never strikes the same place twice. What did you and your husband do to deserve this again? It has only been a year and a half since you buried your last child and you’re not done grieving yet! Your mind continues to drift off and ask many questions as you’re brought in to see the child in the intensive care unit. There is a delayed shock sneaking upon you and your husband as you both are unsuspecting to what your eyes are going to be seeing.
After scrubbing up and gowning up, you are brought to the baby’s bed side. You and your husband break down and begin sobbing uncontrollably while peering over the baby. Your child, your dream, your new life is hooked up to every kind of machine and instrument imaginable. This is your dream, your dream lying there, and it is now shattered. The baby is struggling for his life with tubes going into every part of his body. IV lines hooked in his little legs, patches hooked to his chest, and so many different alarms going off! What are you supposed to do, but hope for the best outcome.
Several months have now past, and you’re drained of energy. The baby has sustained more tests than can be counted. You and your husband have learned to adapt to the hospital life, going and coming everyday with the feeling that there may be no hope for this child to come home. The doctors finally have an answer, an answer to just one of the million questions that you have. There is a diagnosis. You are brought into a room and told by the doctor that your child has a rare disease called Myotubular Myopathy. There is very little known about this disease with the exception that these children don’t usually live past the age of one or two. You’re both told not to expect anything. You’re told that the child will never learn to talk, read, sit up, walk, and that the child will be like a vegetable.
At times, there is a child born into this world that is less than “normal” to your expectations, and you have no idea how to contemplate or handle this so called “gift.” This child has been born with a severe disability, a disability that was unexpected, unwanted, and not understandable. You feel as if there is no hope for your little boy because that is what the doctors and the specialists have told you. You live in a world of hopelessness, and no matter what way you turn, no one can give you any answers. Anytime you get your hopes up for something, you get nothing but a big disappointment. You’re exhausted from all the work in caring for your baby day in and day out. Hell, normal children are a lot of work when trying to meet their needs. Now you have to take on all the normal duties of childcare along with being a nurse, doctor, a therapist, and a magician all in one. Everything you do now is on a grueling schedule with demands unimaginable to everyone else. You live in a world by yourself, and also have fear in what is to come in time. You know that there will be a time when your child will no longer be with you, and that time will come before it should. You wake up every morning wondering if this will be the day that your child dies. Can you prolong the inevitable? Most people can’t, but the question never goes away.
Myotubular or Centronuclear Myopathy is the rarest form of 40 different types of Muscular Dystrophy, and is a congenital disease or illness that does not affect the bones or the blood, but affects all the muscles of the body. It is passed from an unaffected mother to a male child through the X chromosome, which is the sex determining chromosome. If the mother is a blind carrier, there is a 25% chance that she gives birth to an affected male child. If she has had one or more affected children, there is a 50% higher chance that the next child will be more severely affected. This disease can also be passed as a dominant or recessive trait, but the main passing is through the X chromosome. This disease mainly affects only male children with the exception of one or two female children. The reasoning for these girls that have been affected is that they have another rare condition that gives them an extra sex chromosome. This disease causes atrophy, weakness, and lack of muscle tone. For some unknown reason, along with the atrophy and weakness, this disease also causes an increased liver enzyme function and cardiomegaly.
There are five major physical characteristics of this disease. The first and mostly affected area is respiratory weakness and distress. This weakness leaves these children to have tracheostomies, dependent on ventilators to breathe for them, and open to constant lung infections. The next characteristic is their bodies remain floppy and lethargic, which leaves them wheelchair ridden and dependent on someone else to care for them throughout their entire lives. The third characteristic is their inability to swallow. This requires them to have a tube surgically placed in their stomachs for feedings. The inability to swallow also puts them at higher risk for aspiration of even their own secretions. The fourth characteristic is the limited eye movement, and the lack of blinking, causing the eyes to over water, and appear as if they are crying all the time. The fifth major characteristic is their elongated and thin faces with high palates, giving them ear and dental problems. Even though the actual prognosis or life expectancy is not yet known, medical technology has improved drastically, allowing these kids to survive longer and better lives in their own homes.
My youngest son , Forrest, has come to show us that he is growing up to become a little man and has outdone everyone’s expectations. He is a very smart and funny guy. Forrest was born in 1992 with many complications and serious medical problems of Myotubular Myopathy. It took nine months of extensive tests to diagnose his illness. He is totally ventilator dependent, gastrostomy tube fed, wheelchair bound, and totally dependent on someone for all his daily cares. This requires 24 hour nursing care in my home. He has the ability to speak around his trach and uses some sign language to communicate with people. He has learned many things in the last several years, but the best thing he has learned is that he can do anything he wants as long as he never gives up. Forrest attends school at Morgan Park Middle and is now in the sixth grade. He has been mainstreamed into a class with children that do not have disabilities, and the entire school has been very accepting and able to incorporate him into the agenda focusing on his abilities, not his disabilities. Forrest has brought much joy and understanding to our lives with all his smiles and kisses. As I have watched him grow and learn, he has come to show me that he is no longer a child, but beyond all the equipment, there is a little man that loves life and gives everything he can.
There many types of ethical issues when dealing with a child of this magnitude. The issues are on all sides of the street. As a parent, I have to make a decision as to what type of care or surgery I am going to allow for my son. A nurse needs to have an open mind when caring for a child with this type of high-tech, medical condition, and not dwell on their diagnosis and prognosis. People need to see the child behind all the equipment and big words and treat the child with respect, dignity, compassion, and love.
The nursing role is considered to be a very highly skilled position for the amount of care that has to be given. There has to be constant assessment of not only the child, but of all the mechanical equipment needed to sustain this child’s life. Nurses have to be able to adapt and be very clever with all that they do, because nothing is ever the same. The nurses become not only caregivers, but also teachers, problem solvers, mechanics, and therapists. They are required to be the eyes and ears for the physicians and specialists. They have to become part of the family and feel comfortable working in a home with the child. This puts a lot of stress and strain on them because there is really no direct supervision or direction for them. They have to work independently and as a team with the family all in one. It takes a very special person to be able to comply with all the needs of a child with Myotubular Myopathy.
Yes, as a parent, I’ve had to experience the ton of disappointments and shattered dreams with my son’s life. I have had to trudge through all the rig-a-ma-row and letdowns. I have experienced more hopelessness than most people will ever feel and feel like there is no end to the amount of things that I need to accomplish during the day. There are some days that I feel like I just can’t hang on anymore and want to give up! Raising my son has been one of the toughest things I have ever done, but I am still here doing it day in and day out. The best part to all this is what Forrest has brought to my entire family’s lives, nurse’s lives, and the community; he has brought us all hope, joy, acceptance, and unconditional love.
With these children born unto us unsuspecting parents, they are born unto the best parents there are. I will always be able to deal with the situation because God does not give us more than we can handle. These are special children that are given to special parents, and possibly are brought into this world to bring the world some awareness of a real happiness and satisfaction in life. The shattered dreams have faded away and become new dreams of encouragement and accomplishments for me and my family, because there are many more little men with Myotubular Myopathy out there needing care.

Posted by Neaker Girl :: 2/10/2006 09:54:00 AM :: 0 comments

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------------------------------------- It's Friday!!!!!!!

I finally got a day off from work, but have a ton of things to get done at home. (take down Christmas decorations, laundry, dishes) hehehehe. Can't believe I have not taken the Christmas stuff down yet. What the hell have I been thinking?! Forrest even said" Mom, Christmas is gone." Little turkey had to remind me didn't he. The little man just turned 14 but has decided he wants to go bowling this weekend. That will be interesting to set up. I am on call this week and have received atleast 1 call everynight about stupid stuff. I am talking about receiving these calls between 2-4 am everynight. I think that I am going to go to work next week and call our night staff at home in the morning about 8 or 9 about stupid crap to wake them up and see how they like it, hehehehe, I can be a naughty girl at times. Hope everyone has a great weekend, I will be back in a little while.
Love,
Me

Posted by Neaker Girl :: 2/10/2006 09:39:00 AM :: 0 comments

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Tuesday, February 07, 2006

things to ponder

Here are a few things to think about that you probably have never thoughtabout...ha ha
Can you cry under water?

How important does a person have to be before they are consideredassassinated instead of just murdered?

Why do you have to "put your two cents in" but it's only a "penny foryourthoughts"? Where's that extra penny going to?

Once you're in heaven, do you get stuck wearing the clothes you were buried in for eternity?

Why does a round pizza come in a square box?

What disease did cured ham actually have?

How is it that we put man on the moon before we figured out it would be agood idea to put wheels on luggage?

Why is it that people say they "slept like a baby" when babies wake uplikeevery two hours?

If a deaf person has to go to court, is it still called a hearing?

Why are you IN a movie, but you're ON TV?

Why do people pay to go up tall buildings and then put money inbinocularsto look at things on the ground?

Why do doctors leave the room while you change? They're going to see you naked anyway.

Why is "bra" singular and "panties" plural

Why do toasters always have a setting that burns the toast to a horriblecrisp, which no decent human being would eat?

If Jimmy cracks corn and no one cares, why is there a stupid song about him?

Can a hearse carrying a corpse drive in the carpool lane?

If the professor on Gilligan's Island can make a radio out of a coconut,whycan't he fix a hole in a boat?

Why do people point to their wrist when asking for the time, but don't point to their crotch when they ask where the bathroom is?

Why does Goofy stand erect while Pluto remains on all fours? They're both dogs!

If Wiley E. Coyote had enough money to buy all that ACME crap, why didn't he just buy dinner?

If corn oil is made from corn, and vegetable oil is made from vegetables,what is baby oil made from?

If electricity comes from electrons, does morality come from morons?

Do the Alphabet song and Twinkle, Twinkle Little Star have the same tune?

Why did you just try singing the two songs above?

Why do they call it an asteroid when it's outside the hemisphere, but call it a hemorrhoid when it's in your butt?

Did you ever notice that when you blow in a dog's face, he gets mad at you, but when you take him for a car ride; he sticks his head out the window?

Posted by Neaker Girl :: 2/07/2006 08:49:00 AM :: 1 comments

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Monday, February 06, 2006

Yes, I'm back again

My aunt was 14 when I was born, and I grew up with her as my best friend. We had children all around the same ages. We have watched each other rise and fall and rise up again, leaning on each other just to make it another day. Nancy was my strength when I burried my son Sef, and I know that I was her's when we burried RJ. We are a lot alike in many ways and we always seemed to be the black sheep looking for trouble. Don't know what that is, but we could read each other's minds all the time. I used to live three blocks from her. She would watch my kids for me and I would watch her kids for her. We would get together just about everyday. The kids got to hate the spagetti dinners. If Nancy was baking cookies, she would call me the day before and tell me that I could not call her the next day or come over because if I did, the cookies would get all messed up. Well, no one is going to blame me for any of that so I would always call her and the cookies would always flop. hehehehe. I remember the christmas cookies and the frosting fights. Wow what a mess. I am always thinking about my aunt and miss her greatly. You see, she moved out of state and we just don't get a lot of time together anymore. Nancy was there for the birth of all my children, and I was there for almost all her children. She had 4 and I had 4. We would sit and talk about the neighbors, because they would talk about us and we called them the little piss ants, and they called us the half breed, in bred, wagon burner nuts of the block. We have both lived hard lives, and I still believe to this day that we are due for some of the good life. No matter what, we can honestly say life might have been hard, but we had a lot of gutt renching laughs. Two words (MILK NOSE), aunty knows and understands, hehehehehe. Gotta get to bed now.
Love,
Me

Posted by Neaker Girl :: 2/06/2006 10:35:00 PM :: 2 comments

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What the hell do you have to do to get someone in this house to lift a flipping finger. I got home late from work today, picked up Mike for his darts, then came home to find that no one had done a thing since last week!!! The dishes were still in the sink, the bathroom not cleaned and one kid sitting on the puter just acting like he had no clue what I was ticked off about. I get so frustrated with everyone in this house. Then as I walk in the door, I am being bombarded by two nurses about things that did not get done this weekend, and I was not even home?!!!! So what do I do? hmmmmmmm. Well it started world war three, but I unplugged the DSL and that did not have any affect on anyone. One kid came downstairs to see if the other computer was working and the old man passed out due to the amount of intake he had tonight. So from there, I proceeded to throw dishes into and out of the sink, breaking a few and swearing while doing it, putting the new huge battery on Forrest's wheel chair because you know it has been sitting there for three months just waiting for a big tuff guy to fix it, hahahaha, and that worked. Finished the dishes and ate a cold taco for dinner. Wow what a day. hope everyone else had a better time than myself. I love being a bitch to everyone in my house, hehehehehehe. I tried going on strike, but just could not stand looking at the kitchen any more. I figured that after not making dinner because the dishes were not done for almost a week, someone would get a clue. Duh!!!! takes a lot for them to figure things out here I guess. Oh well, I guess I feel better now. Got that off my chest. Dear Aunty, I cannot take a picture of my new tattoo because my camera sucks like everything else around here. I will see if mom can take the pic for me and then I will let you see it. Love ya and miss ya. Talk to you soon. Everyone else have a great night and hopefully tomorrow will be a better day for all of us.

Posted by Neaker Girl :: 2/06/2006 10:16:00 PM :: 0 comments

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Sunday, February 05, 2006

Ok, I'm back from Terra's and the new tattoo hurts like hell!!!!! It was great getting away for the weekend and just relaxing a bit. I woke up this morning with my nephew, Ben, with his nose touching mine asking me if I could make him breakfast. Boy that was a little different for me. Have not had anyone that close for a while, hehehehe, let alone asking for me to feed them! Things are still all good now. I'm getting ready for bed now and waiting for the old man to get home from watching the Super Bowl. I think that I hear him now. Hope everyone is doing well and had a great weekend. Bye for now, see ya all soon.
Love,
Me

Posted by Neaker Girl :: 2/05/2006 07:59:00 PM :: 0 comments

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Friday, February 03, 2006

This Picture

This picture was shortly after Forrest arrived home from the NICU at the age of 5 months, and he will be not 13 this month, but will be 14. (Aunty can't keep up with birthdays) (hehehehe). Forrest was born with a rare form of Muscular Distrophy called Myotubular Myopathy and was not supposed to survive after the age of 1 or 2. Guess we are doing great. He is currently in the 7th grade at one of our local middle schools and loves school with a passion. My next child Kurtis just turned 18 and is in the 12th grade excelling well. He has started into nursing(same as myself) and really seems to like it. (Even if he didn't like it, he is doing great) My oldest child, Luke, will be 22 this year and is still trying to decide what he wants to do with his life. He is getting married in the summer this year and is always on the computer. He lives about 8 blocks from myself and is always enjoying mom's cooking. A little about myself. I am 38, soon to be 39, divorced, but in a long-term relationship with a man that I love greatly. It took him 8 years and he finally popped the question! My response was that I am going to take him for a test drive for another 8 years before we get married. Now back to the basics, I work three jobs and don't have a whole lot of time for much at this point in my life. But along with those three jobs, comes the joys and the losses of nursing. I am the nurse manager for a small 37 bed assisted living facility for seniors. Dealing with the Greatest Generation always has it's ups and downs. Well I have to go to work now and will be one later today sometime.

Posted by Neaker Girl :: 2/03/2006 07:27:00 AM :: 1 comments

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------------------------------------- My Sons

This is my son Forest. He will be 14 on February 8. He is the love of my life and has inspired me to such heights I'd could never have achieved on my own. I am a better person because of my son. He has a wonderful sense of humor and is a joy to behold. I wanted to introduce him because I will be posting and he will be in them.

I am so proud of my son Kurtis, he is a senior in High school and he brought home an awesome report card. Then there's Luke. Luke is out on his own and like most kids who go out on their own I only hear from him when he needs something.

Posted by Neaker Girl :: 2/03/2006 06:50:00 AM :: 1 comments

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Thursday, February 02, 2006

Hello

Hi, my name is Angie and my Aunty Nancy got me started blogging. I guess she did a post about me and my three son's. So you already know some things about me. Lee is my mother who Aunty talks about all the time. So with that said...

Let's get this party started.

Posted by Neaker Girl :: 2/02/2006 08:07:00 PM :: 0 comments

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