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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!!!

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Divorces happen for a multitude of different reasons. But there are some things that many divorces have in common. One of these things is a breakdown of communication between former partners.

Couples who have trouble communicating effectively with one another often end up separating. And even couples who once communicated well might find themselves straining to get through to one another once they’ve split. But when there are children involved, communicating is essential.

Even if you cringe at the thought of talking to your ex, it is in your children’s best interest for you to work together on certain issues. Here are ten tips for talking to your ex without having a meltdown.

1. Remind your ex (and yourself) that communicating with each other and working together is important. Sometimes our emotions take over and we forget how our actions affect our children. If your ex becomes hostile or unreasonable, a gentle and non-confrontational reminder that the children’s welfare is at stake could change his tune.

2. Try to proceed in a businesslike manner. When we’re at work, we must often push our emotions aside when dealing with difficult co-workers, customers or clients. It may be a little more difficult when an ex-partner is involved, but it is certainly possible.

3. Be willing to compromise. When it comes to our children, there are certain things that we won’t bend on, nor should we. But there are also areas in which compromising wouldn’t hurt anyone. Keep an open mind, and things will go much more smoothly.

4. Avoid talking to your ex when you’re stressed about other things. If you try to talk when something else is bothering you, getting along will be much more difficult. While it’s not helpful to keep putting your ex off, there’s rarely any harm in postponing a talk to a better time.

5. Consider setting up a time to talk about matters that involve the children each week, or at least once a month. This will help ensure that both parents are in the loop about important matters, and it will show the children that you are both committed to raising them well.

6. When you’ve set aside time to discuss parenting, avoid discussing other things. If there are other unresolved matters, set up a separate meeting time to discuss them.

7. Make an agenda for each parenting meeting. Write down the topics you wish to discuss, such as behavior, schoolwork and extracurricular activities. This will make the meetings more productive.

8. Choose the right method of communication. If you would rather not meet face to face, you can effectively discuss most issues over the phone. If you prefer not to talk at all, perhaps email would work out better. As long as you’re communicating and not bickering, it makes little difference how you communicate.

9. When in doubt, put things in writing. If your ex tends to forget things (or pretend to forget them), writing a note will help him remember (or keep him accountable). While writing things down doesn’t guarantee them, it can be helpful.

10. Avoid sending messages to the other parent through your children. Kids might forget to pass them on. And more importantly, if there is a disagreement, they might feel partially responsible. It’s much better to deliver all messages yourself.

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The decision to get a divorce is usually an agonizing one. But the thought of telling our children about it can be absolutely terrifying. It’s disheartening to have to be the bearer of such devastating news, and it’s impossible to predict how they will react.

Talking to children about divorce is never easy. But there are some things you can do to make it less stressful for everyone involved. Here are some tips.

1. Talk to your children as soon as possible after you’ve come to a decision. Postponing the talk will just give you more time to dread it, and you may lose the trust of your kids. Make sure that you intend to go through with it, try to make some preliminary living arrangements, and break the news as soon as possible afterward.

2. If possible, both spouses should be present when telling children about divorce. Otherwise, they might feel as though the decision was one-sided or that the absent parent doesn’t care about them. This will also help them understand that you will still be parenting as a team.

3. Choose a time that will not interfere with your children’s normal activities, and a place that is familiar and comfortable. This shows respect for the things that are important to them and ensures that they will feel comfortable asking questions.

4. Tell all of your children at the same time. If you don’t, there will almost certainly be feelings of resentment. Even if they are not close in age, they deserve to hear about it at the same time. You can talk to them separately in more age-appropriate terms later.

5. Younger children are unlikely to understand what divorce means. Explain it in the simplest terms possible. Explain that you and your spouse will no longer be living together, that they will see both of you, and that both parents love them and always will.

6. Avoid arguing with the other parent or laying blame. This is a time to inform your kids about what’s going on, not to decide who’s right and who’s wrong.

7. Do your best to avoid expressing anger or bitterness, but feel free to express sadness. Doing so lets children know that it’s okay for them to be sad.

8. Make it a point to tell your children that it’s not their fault. Young children are especially prone to thinking that they are somehow to blame for divorce, even if they don’t vocalize it. It’s very important to reassure them that it has nothing to do with them.

9. Fill them in on everything that has been decided so far. They need to know where they will be staying, if a parent is moving out, and that their basic needs will be met. Do your best to address these concerns as fully as possible.

10. Encourage your children to ask questions, and answer them truthfully. You don’t have to tell them all of the details about why you are separating, but it is critically important to maintain their trust.

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I have had a horrible time over the last week. What you are about to read is something that I didn’t think would ever happen in my home and surely not by the person that did these things. What you are about to read is completely 100% true.
About a month ago or a little longer, I got a full time day nurse for Jamie. I was so excited. She had been here before more than once but never stayed for very long at a time. She never seemed to want to stay in the same spot for very long so when it was proposed for her to be here full time, long-term, I wasn’t sure that was a good idea but I went with it. I said sure and she started working full time with Jamie. I was very excited. She got me wanting to go back to school and wanting to have a career and a life of my own again.
Well, there were a few issues starting out. When asked to make sure that the trach ties were tucked in the way that we did them so that Jamie wouldn’t pull the wrong end and his trach come out, I was told that she was an excellent nurse, she knew what she was doing and didn’t need to be told what to do. Well, everytime that she did his ties, I had to fix them because they were never done the way I asked her to do them. She wanted to bring her son to work with her for the day and that is a STRICT Medicaid violation. She acted a little upset when I told her that wasn’t going to happen. One day I was in the car getting ready to take Jeremy to school when her and her daughter pulled up. I figured that she was being dropped off by her daughter since they had been sharing her car until her daughter’s car was fixed. As I was pulling out of the driveway, I saw her daughter and her go into my house. By the time I got back from the 5 minute trip I was getting upset. She has already been told that she couldn’t bring anyone to work with her and this time she didn’t ask first, she just did it. I made her call the agency so that they could tell her that she wasn’t allowed to do this because she didn’t want to listen to me. She called, was told that it couldn’t happen and made her daughter leave.

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Jamie had a hearing test today.  I kind of thought I would know what the results would be but there is still this hope that you are wrong and that what you think you are noticing…. is just your imagination.  His right ear is in normal range and his left ear is not.  Part of the notes read… “a moderate rising to mild sensorineural hearing loss in the left ear.”  I am not exactly sure of what that means other than what the doctor said.  He said that if there is a tv on or if we are running water and someone was talking to him at the same time he would not be able to hear us talking.  That if he were in the classroom at school he would need a hearing aid or the teacher would have to wear a microphone and him have a speaker on his desk.  Since he is home schooled right now he said that it would be up to us if he gets a hearing aid or not.  I hate for him to have to have one but if that will help him hear and understand… then I think we should get him one. 

    We will see when we go back in May for another test.

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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.

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