Here are two pictures of Jamie at 3 months old when he was finally starting to get better.  This was just after his "rock bottom" in many ways.  There have been many times where he has been this sick or maybe even worse but this is the one time I have a picture to show ...

Jamie at 3 1/2 months.  Both are the same day just one a little closer up.

Welcome.  I am going to spend a few minutes talking about Jamie's disease.  Jamie has Neurofibromatosis Type 1.(www.nfinc.org) 

If you click on the link above you can read a lot of information about Neurofibromatosis Type 1 and Type 2 is there too.  There is way more information then I can write on here.  I am including a picture below of all the possible symptoms of NF.  Jamie has many of them.

  Jamie has the brain tumors (two at last count), learning disabilities, and macrocephaly.  He has a lot of the freckling.  He has very bad scoliosis that he has had to have rods in his back to correct at age 5.  He has many tumors in his body.  He has a large one that is wrapped around his trachea and his esophagus.  It is also wrapped around his left main stem (the tube that connects your trachea and your lungs together).  Right now the tube is compressing his airway and left main stem about 25% closed.  His surgeon says that he can't remove it.  The last chat we had about removing it we were told that they couldn't even remove half of it.  That if the day came that they would have to remove it or "let him go".... he wasn't sure what he would do because it was so big and so involved that he would be afraid that something would happen to him in the surgery.  So, I am not sure what will happen with that if the time comes. 

    Everyone always asks me what his prognosis is... the only thing I can say is what the doctor's told us when we asked.  "We don't know what is in the future for Jamie.  He shouldn't still be here now."  To me, that means that the sky is the limit. 

    Just last night Jamie was asking me when was he going to die.  He has asked me that several times and I always tell him the same thing... "If I have anything to do with it....a very long time from now".  Then he wanted to know if he would be able to take care of himself one day.  I told him I thought that he would and I asked him why he was asking that.  He said that he wanted to know because he didn't know what would happen to him after I died if he couldn't take care of himself.  It just isn't fair that an 11 year old would have to have such thoughts. 

    Anyway, here is another link about nf....  http://www.ctf.org/  Children's Tumor Foundation.

    Also if you would like to help make children a little more happy... please check out Make A Child Smile @  http://www.makeachildsmile.org/   Send a card to three different children each month.  Sheets of stickers or those temporary tattoos are a big hit in the cards.  Jamie was featured in April 2001.  You can view his time @ http://www.makeachildsmile.org/2001/prev_2001_apr.shtml     You can also check out the Angels section.  Unfortunately not all of the children featured are still with us.  Matter of fact, because of the process to get a child featured, some of the children haven't even made it long enough to be featured.  I think it is just the saddest thing to have so many sick children.  Take a few minutes if you can and check out these wonderful, brave children. 

ok   enough for now.  I will let you go and enjoy your day.  Have a great day and a GREAT NEW YEAR!!!

Mood:  happy

Just wanted to wish everyone a very HAPPY NEW YEAR!  I have a feeling that 2008 is going to be GREAT!!!

    I wanted to thank all of you that have been reading my posts.  I am adding a fre new topics.  I am going to also post some about my oldest sons life and his medical condition.  I know there are many out there dealing with the same disease that he has and I think they too could benefit from learning about him.  I am also going to talk about when he first came home from the hospital and how we dealt with having a beautiful nursery turn in to what looked like a hospital room.  There is a way to balance those two so that it feels more like home to them. 

Come back soon to see the new discussions!!!

~Amy

    Before I start this post I have to say that there are MANY doctor's out there that have the very best interest of their patients in mind with everything they do and I am NOT meaing to offend ANYONE with this post....

    However, there are some doctor's out there that are just not that great at the "bed side manner".  How many times have you heard that there is nothing wrong with your child even when you know in your heart that something is not right?  I have heard this many times.  I have been told that the blue spells that Jamie was experiencing was "normal".  Now, I don't know if that sounds normal to you or not but a newborn turning the color blue and purple was not normal to me. 

    I really believe that they thought that I was a new mother and my child would cry or cough and turn red and I was over reacting.  I have done CPR on adults many times on the rescue squad and I know the difference between red from crying and blue from not breathing.

    My advice to ANY mother when dealing with a doctor is.....

Yes.. they have been to medical school.  Yes... they have graduated medical school, been an intern and done their time as Residents.  Yes... sure they can pronounce words that we can't even figure out what letter they start with... BUT no matter WHAT they know and what you do or don't know in their medical books....YOU KNOW YOUR CHILD BETTER THAN THEY DO!  You are that child's mother.  You know your child better than anyone else does.  Whether you carried that child in your stomach for 9 months or you adopted your child YOU ARE that child't mother and you have that bond.  You know what is "normal" behavior and what is not. 

    If you really feel like there is something wrong with your child and are told that there isn't or that you are just over reacting.  GET A SECOND OPINION!  Sometimes you even have to get a third or fourth opinion.  If in your heart you know something is wrong with your baby don't give up until you find someone that will listen to you and really believe in you and your child.  No doctor is God.  They make mistakes, they are not perfect.  When you find one that you can truly trust and treats your child like they would treat their own, you have found a great doc.  One that will give their all to take care of your child they way you would. 

Mood:  chatty

    As everyone here knows I have two boys, one of which is disabled.  It is a hard life to provide for two children on your own but when one is disabled and requires so much attention it is even harder. 

    Sometimes, my youngest son feels neglected and that just hurts me to the core.  I want both of my children to KNOW for sure that if I were given a choice of all the children in the world to have as my own, they are the two that I would have chosen.  That I have NO regrets in my decisions I have made and I have always done what I believe is best for them even if they don't really see it that way at the time. 

    I guess I should go into a little more history first.  I was 25 when my oldest son was born.  I had just turned 25 about 3 weeks before he was born.  His due date was October 12, 1996 but decided to come 4 weeks early.  When he was born he had problems breathing right away.  He had something called stridor and had to struggle to breathe.  He had a tracheostomy put in when he was 3 months old.  When he finally came home after being in the hospital that time for 6 weeks he had 16 hours of nursing care in the home per day.  (Or at least that is what we are supposed to have).  He still has that amount of coverage allowed but with the nursing shortages that doesn't happen all the time.  We will go in to the nursing problems in a later post. 

    Allowing strangers in my house to take care of my child is a really hard adjustment.  That will also be covered more in a later post.  Right now I am just giving a brief history so that you can see where I am coming from and how I have had to adjust to this "odd" life that God has given me.  I have to tell you that I will mention God in these posts from time to time.  Don't get me wrong, I will not tell you that you should believe or that you should do this or that but in my life there are things that have happened that I can't attribute to anything else other than a higher power. 

    With this blog, I plan on going in to all the trials and tribulations of dealing with a disabled child, with an abusive ex husband, having strangers in my house taking care of my baby, being a single mom of two boys and having to balance all of these and still find time to have a life of my own AND how to not feel guilty about wanting and having my own life in addition to being a mom.  Mother's are women too.  They deserve their own lives outside of being a mom.  There are a lot of women today that feel like once they have children they are mom's and that is all they are.  I don't believe that is true.  This blog is for those that also want to have their own lives.  For those that believe that once you become a mom you lose your "woman" identity, I appreciate your views but please do not try to convert me to your beliefs.  I will do the same.  I know that one day, with God'd help, my children will grow up, become independent and have their own families and if ALL of my life is being a mom then I will be very lonely when they go.  I love my children and they come first in my life and my man understands that.  He knows what they mean to me but he also knows that he means the world to me too.  That there are times for just him and that makes us better together. 

    I appreciate comments and would love to hear from those that read my blog.  I would love to hear from those that have read this and it has made some kind of difference in their lives. 

    I hope you come back again soon and enjoy your time here. 

Mood:  not sure

I am just a little sick today.  I have been sick for a few days now and today has been rough.  My cousin and her sister in law are here from New York for the holidays.  Her mother died September a year ago so this time of year is hard for her.  This is the second Christmas with out her. 

I am dreading the kids leaving tomorrow.  I am more dreading their dad being here to pick them up.  I can't say what my son has told me because then he will get yelled at this weekend and get in trouble and be miserable.  Which so isn't fair, I mean why should he pay for telling me something that made him cry so much and that really is against the law.  You can't say you should have killed someone... last time I checked.  Then he told my son "now you can go home and tell your mom that and see what she has to say about it". 

I don't know what to do about it.  I don't want the kids to never see him again but I also don't want him to be abusing them like this either.  I also have to make sure that I have enough to make it stop or else my youngest son will just really get yelled at and mistreated for "telling" on his father. 

Does anyone have any suggestions about this?  I don't want their dad to know he told me cuz he will get in even more "trouble" with his dad and I will feel like that would be my fault but I can't let him do this to him either.... Any suggestions???

Mood:  happy

Welcome to my first entry in my new blog!

I am a single mother with two wonderful little boys.  My youngest son has ADHD and my oldest has Neurofibromatosis Type 1, severe Tracheomalacia, a tracheostomy, is on a ventilator, a feeding tube and has nursing care in our home up to 16 hours per day.

I have an ex husband that is really hard to deal with.  When we first separated over 5 years ago he became even more violent and unpredicatble then he was when we were married and I ended up getting a protective order placed on him soon after we separated. 

I am unable to work a “real job” due to lack of reliability of nursing coverage and no one else available to watch my son.  I recently filed for a review of the child support because of the drastic increase in his pay and now we are having to go to court to let the judge decide that DCSE (child support enforcemnt) made the rigth decision and we are arguing again.  I hope it doesn’t escalate to the protective order stage again but my kids have come home telling me of the “I should have killed her” comments he has made. 

Anyway, I found the ProBlogger page tonight and wanted to get some blogging experience so I can apply for a ProBlogger Job and one day have a home for me and my children other than living with my mom.  Don’t get me wrong, I appreciate the fact that I have a place to live for the time being but the future is uncertain.  My mom is 73 and had surgery for cancer this past summer for the second time.  She has a reverse mortgage on her home and when something happens to her we either have to pay off that loan or move out and we only have 90 days to do one or the other.  I really want to be able to provide a home and a secure future for my kids and to help lift some of the pressure off my shoulders. 

So… help me out…. come back, read my blog, help me to get my experience blogging and all constructive criticism is welcome!