My new idea!

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As anyone who has read my blog knows, my oldest son has a trach that he has had since he was 3 months old.  When you have a trach and you breathe in air, especially cold air, that air goes right to your lungs.  People without trachs don’t have that problem as often because you have your nose, mouth and throat to warm the air you are breathing in before it reaches your lungs.  I have come up with something that as of yet has not been named, so until it is officially named, will be called “Trach Warmer”.  I am making them in many different designs.  I am making a red one with hearts currenlty for Valentine’s Day and soon will be making one with Green Hats for St. Patrick’s Day.  I just finished my very first one today and Jamie wore it tonight when we went out to get his medicine.  He really liked it.  Normally when he would go outside he would be wanting to take off his blanket that we had on him as soon as he got in the car.  Tonight he not only wore it in the car the whole time but he also wore it in the store and didn’t take it off until we got home.  I think I may just be on to something.  I am filing the paperwork to get my patent and as soon as that is done and they are protected, I will be offering them on my site for sale.  If ANYONE knows of a manufacturer that would be interested in picking these up, I would love to know.  I am going to pitch them for distribution so that all kids and adults can get them.  Keep your fingers crossed.  I will be donating the second one made to Dr. Rodgers in Charlottesville to give to a child that he thinks will get good use of it.  It will be the heart one like I made for Jamie since we go on Feb 7th. 

I have not included them on my website yet but when I do, one place you will be able to find them and other home made items I make for sale @ Country Cottage Shop  Come see us soon

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Friday’s doctor visit

    Today was a hard day at the doctor’s office.  Jamie didn’t look so good today.  He was kind of pale and had huge circles around his eyes.  The nurse said that he was having stridor today in his breath sounds.  That isn’t a good thing to have, it means there are some breathing issues.  We took him right to the doctor’s office.

    The doctor saw him and said that he was not “sick” this time.  I told him about the report from the UVA surgeon and the MRI results.  He looked up on the computer and read part of the report.  He said that it was most likely the mass in his chest that was causing his problems.  He said that if I hadn’t had a “prognosis talk” yet then I needed to have one.  That he wasn’t saying it was going to happen this weekend but that I should enjoy every minute with him.  That in the next couple of years, we may not have him anymore.  That was really hard to hear. 

    I want to take the boys to the beach this year.. so I am going to start saving money so I can take them.  I just hope we can make it this year instead of next.  I have heard of a place called Plim Plaza in Ocean City MD that is supposed to be a good deal, so I think we are going to try to get something there this summer.  If they have any rooms left by the time we can make the reservations.  Keep your fingers crossed for me that I can do it for him this summer.  :-)  I thought about Disney in FLA but that is SO expensive and so far away and he can’t really ride any big rides so I don’t know about that.  I will also take them to the carnivals and fair this summer.  Make sure this summer is great… and next one too

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Dealing with “friends”

    I am writing something that will be posted very soon.  It is just a hard thing to post because it isn’t that great of news and I can’t seem to get thru the post with out crying so I am going to have to wait until tomorrow to finish it. 

    I was just thinking about friends and families of the parent with a sick child.  When you first bring your child home you get all kinds of people asking about your child.  You get all kinds of people that are concerned about you and your baby.  I know that everyone else goes on with their lives and aren’t quite as concerned (or at least not so involved).  As you know, we have gotten some bad news about Jamie’s prognosis and I told one of my friends about this news (after the surgery on the 7th).  I told them about the MRI that was coming up and I also told them how important the results of this test were to me and how it could be a life and death kind of thing.  This person and I have been friends for MANY years and I thought better friends than this. 

    Now, my question to you is…. Am I wrong for thinking that I should have gotten a phone call at some point in the last weeks to see what I had heard or to see how I was doing or something???  Or am I just being over sensitive because it is such a life changing situation for me? 

    All I can ask of you today is…. today, hug your kids extra, tell them you love them…. let them know that no matter what the future holds you love them.  If you have healthy children, remember how lucky you are to have them.  Remember how lucky you are to not have been told that in a few years you may not have them anymore.  That you haven’t been told by two different doctors that you need to have a “Prognosis talk” because they are trying to tell you that it appears that you child is reaching the end of their time on earth.  And… if you are lucky enough to be a parent of child that is health challanged…. remember that you are a chosen one.  YOU were hand selected by God to have a SPECIAL child.  A child that would change the rest of your life.  One that God let you borrow for a while to show you the true meaning of love…. and sometimes you have to give them back.

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One more trip tomorrow

We have another trip to Charlottesville.  Jamie has to see the Neurosurgeon tomorrow to get the results from this head MRI.  They called last week and told us that there didn’t appear to be any changes from the last MRI of his head but I really do want to know what those results are.  I sometimes hear one result and then from someone else we get a somewhat different result. 

I will post again soon.  Tomorrow mabye not because it is really hard to concentrate after the drive down there. 

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MRI News

    Well, the hospital called today.  They said that the MRI showed that there was more tissue wrapped around his airway but there was no new mass there.  That it had “grown” but that for right now all they would do would be to watch it and get another MRI in the future.  They said that he did have several neurofibromas in the area below the trachea behind the mediastinum (chest area) but they didn’t appear to be causing any problems for now.  So, all in all it is good news.  Yes it is getting bigger and getting “worse” but at the same time it isn’t to the point where they are going to have to do anything about it.  So, for now we watch, wait and enjoy every day as usual.

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Short Post

I am just posting to let those that are checking back about Jamie to let you know that we don’t know anything yet.  This waiting is just awful.  Part of me wants to know now and the other part of me would be ok to wait a month.  I want to know now if it’s good news so that I can feel better and wait if it’s bad news so that I can have some more time before I have to think about the future. 

    It is scary.  I don’t know what to do and there isn’t really anything I can do now  but wait.  It sure is scary.  I can’t imagine what life would be like with out him and I don’t want to have to.  At least my stomach doesn’t feel like it is on fire today.  At least not as bad as it was yesterday.  Tomorrow should hold some answers.  If not tomorrow, then Thursday.  I will call them Thursday if I don’t hear from them.  I have to take my mom to the same hospital tomorrow to have a CAT scan of her left kidney from where she had cancer last year. 

    I will post again soon.

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MRI Today

Jamie had his MRI today.  When we first got there and they were checking him in they said that they were only doing the MRI of his head and spine.  I told them about the chest part being added on last week and they didn’t know about that.  They had to page Jamie’s surgeon, Dr. Rodgers and they found the orders.  They got him in the room about 8:10 am and they said to expect it to take a couple hours.  At about 11:30 am they came out to get me and told me that he was doing great and that the scan was done.  They were going to wake him up and they would come back soon and get me to get me to go back with him.  I was back there around 11:45 and he was still asleep.  I kissed him on the head and told him that it was all over and that he could sleep as long as he wanted.  He was awake by 12:30 pm and asking to go home.  We were in the car coming home by 1:00 pm.  The test went great, he has had a lot on energy today.  I imagine when it is time to lay down tonight he will sleep very well and sleep in late tomorrow.

    I am glad the test is over and now we just have to wait for the results.

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MRI tomorrow

As everyone knows, Jamie’s MRI is tomorrow.  I am nervous and I am sure that I will not sleep well tonight.  I am not sure why I am nervous about tomorrow because the actual test is not a big deal nor will we know anything tomorrow either.  I am not sure how many days it will take to know.  We got a call from the hospital on Friday and they said that everyone before him decided they didn’t nees an MRI and cancelled.  SOOOOO…. We got moved up.  We now have to be there at 7:30 instead of 11:00.  That is good for several reasons, one because he will be done sooner and get home earlier, also being done that early and not having all the others to read the Radiologist may get to his faster and we get results faster too.  But the bad thing is we have to leave our house by no later than 5:30AM.  That part isn’t so hot.  :-)  But anyway, I will be glad when we are home and it is over and then the real waiting starts. 

    OK, I am going to post just as soon as I know anything.  I have been working on article two of Jamie’s life story in AC (Associated Content) but with everything going on I haven’t been able to finish.  I will do my best to get it finished and published so that those that have read part one can read part two.  If you get in to the story and want to know when the other parts are available to read, you can subscrible to my JJ DANIELS on the AC and there is a place to be notified of new content published.  You can also click HERE and go directly to my page.  This will open in a new window so you can come right back here if you want. 

Have a great day and I will be back as soon I we know something about Jamie.

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Jamie’s Surgery Today

    Jamie had surgery today.  The surgery went well.  There were no surgical complications and he woke up pretty quickly.  However, we got some bad news again today.  Jamie has a tumor (Neurofibroma) wrapped around his trachea and has been compressing his airway shut by about 25%.  It has been this way for many years.  He has had surgery every two to three months and the compression has been monitored and has not changed.  This time the doctor said that his trachea is being compressed in on the left side by at least 1/2 an inch.  If you are asking yourself what does that mean…. Well, we aren’t sure yet what it means.  He is having a MRI on his brain next Monday and they added a MRI of his chest to it.  They said they will call me just as soon as they have the results from it to see what that shows and what the “plan of action” is.  I know that if his airway is closing he won’t be able to breathe and he won’t be able to be here with us anymore.  I am trying not to get too upset until I know for sure what this actually means.  I will take a few days to cry and be upset and I then I will get myself together.  I will feel better and will be strong for him no matter what they tell me.  I know that what ever is meant to happen will happen and I will do everything I can to keep him with us and keep him healthy.  

    If I don’t post for a few days while I adjust to the news that we have received, don’t worry.  I promise to post again soon and I will definitely post the news I get from the doctors and how the test went.  I also wanted to take the time to thank you for reading my posts.  If you want to read more about Jamie… please CLICK HERE and look for ”The Silent Cry” series.  The story starts there from the beginning.    If you are wondering…. I do have a pen name on this site.  My pen name is J J Daniels, so you can go to http://www.associatedcontent.com and search for J J Daniels.  Thanks so much for reading.

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Doctor’s appointment 01-07-08

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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