http://2011aworlando.kintera.org/theapplejacks
The above link will take you to our team/donation page. Once there you can either join our team (if you're local) and/or make a donation. Our goal is $500 this year!
Jackson is the boy honoree this year and I was lucky enough to get a meeting with his school's Principal to see if we could get them involved in helping us raise funds. I was thankful to have Tony with me and the meeting went VERY well! We are just waiting to hear back from her about how they want to help. This week is FCAT so the ball will likely not start rolling until next week.
Health wise Jackson is doing well. Two weeks in a row he did run low grade fevers on a Monday and after the second Monday, I made an appointment with his pediatrician. There was no rash (he was tested for strep, it came back negative) and none of his joints are in an active flare so we're just keeping an eye on him per his pediatrician and rheumy's advice.
We have some friends that are not doing so well so please say an extra prayer for them and keep them in your thoughts!
4.13.2011
2.16.2011
Appointment Day
Hello!! I promised an update about today's appointments so here it goes....
Our appointment time was noon. We were right on time so we checked in, got vitals done, and then went back to our room. I filled out the paperwork and for those of you that visit the Swamp, you know exactly what I'm talking about, lol. There were a few updates to write down this time around and I was glad I kept notes!! It made filling out that paperwork so much easier. The kids were in a crazy silly mood today so there was a lot of laughter in the room while waiting for the doctor.
When Dr. E did come in I don't think she expected to walk into giggle fest 2011!! She did say that she liked walking in a room filled with laughter, and I mentioned that they were like that because their father was with us today, haha! The came the discussion of things that have developed, disappeared, and changed within the last four months. You may or may not remember the week long rash that Jackson had back in November/December along with the molluscum he had for a few months. Good news, the molluscum is gone!! (He does have a few spots left but NOTHING like what he had) And the mysterious rash that ended up being not so mysterious? Well Dr. E agreed with his pediatrician that it was probably just a case of extremely dry skin and switching his soap to the Cetaphil bar soap was a good thing.
Then the physical exam happened and he showed no signs of flaring and never once complained of pain during the examination!! She thinks he has bigger ankles than average along with bigger second toes than most. That determination came from moving his ankles every which way and putting pressure on his toes.
Dr. E wants to continue the meds as normal for now but when we go back in four months there will be talk of doing one of two things.
1. Taking away the methotrexate all together and continue with JUST Humira.
2. Keeping methotrexate at every two weeks and taking Humira to every two weeks as well.
We have four months to talk about it and see what Jackson wants to do because let's face it, it's HIS body that gets poked every week. All of this will be based on how the next four months go of course so here's to hoping for a great four months!!!!
The it was on to GI. This appointment was kinda of a "wham bam thank you ma'am" appointment. Jackson has not had ANY stomach issues since late October/early November of 2009 and we believe that was because of all the red dye in the halloween candy he ate. So as long as he stays on the up and up in that department, we don't go back to GI for a year!!
All in all, good appointments!!
Thank you for all your prayers and well wishes!! We love our JA family! =)
PS. For those not doing well, we pray each and every day for our JA family. Keep fighting!!
Our appointment time was noon. We were right on time so we checked in, got vitals done, and then went back to our room. I filled out the paperwork and for those of you that visit the Swamp, you know exactly what I'm talking about, lol. There were a few updates to write down this time around and I was glad I kept notes!! It made filling out that paperwork so much easier. The kids were in a crazy silly mood today so there was a lot of laughter in the room while waiting for the doctor.
When Dr. E did come in I don't think she expected to walk into giggle fest 2011!! She did say that she liked walking in a room filled with laughter, and I mentioned that they were like that because their father was with us today, haha! The came the discussion of things that have developed, disappeared, and changed within the last four months. You may or may not remember the week long rash that Jackson had back in November/December along with the molluscum he had for a few months. Good news, the molluscum is gone!! (He does have a few spots left but NOTHING like what he had) And the mysterious rash that ended up being not so mysterious? Well Dr. E agreed with his pediatrician that it was probably just a case of extremely dry skin and switching his soap to the Cetaphil bar soap was a good thing.
Then the physical exam happened and he showed no signs of flaring and never once complained of pain during the examination!! She thinks he has bigger ankles than average along with bigger second toes than most. That determination came from moving his ankles every which way and putting pressure on his toes.
Dr. E wants to continue the meds as normal for now but when we go back in four months there will be talk of doing one of two things.
1. Taking away the methotrexate all together and continue with JUST Humira.
2. Keeping methotrexate at every two weeks and taking Humira to every two weeks as well.
We have four months to talk about it and see what Jackson wants to do because let's face it, it's HIS body that gets poked every week. All of this will be based on how the next four months go of course so here's to hoping for a great four months!!!!
The it was on to GI. This appointment was kinda of a "wham bam thank you ma'am" appointment. Jackson has not had ANY stomach issues since late October/early November of 2009 and we believe that was because of all the red dye in the halloween candy he ate. So as long as he stays on the up and up in that department, we don't go back to GI for a year!!
All in all, good appointments!!
Thank you for all your prayers and well wishes!! We love our JA family! =)
PS. For those not doing well, we pray each and every day for our JA family. Keep fighting!!
2.12.2011
Let's Move Together Walk
Jackson was named one of the child honorees for the 2011 Let's Move Together Walk!!
That's pretty exciting!!
In other news, I do believe that I am prepped and ready for Wednesday's appointment at Shands! The list is made, the questions are written down, and now all we have to do is wait until Wednesday.
That's pretty exciting!!
In other news, I do believe that I am prepped and ready for Wednesday's appointment at Shands! The list is made, the questions are written down, and now all we have to do is wait until Wednesday.
2.07.2011
Prepared.....Or not.
In 9 days we head to G-ville for Jackson's rhuemy and GI appointments.
I'm not prepared.
I am admitting that.
But I am hoping that within the next 8 days, I get uber prepared.
I need to make a list.
A list of questions.
But what do I ask?
I'm lost.
We've been on this journey for over a year now and I am still lost.
Is he flaring?
Where?
Do we need to go back to weekly methotrexate?
His knees sometimes hurt 2-3 days before the bi-weekly metho shot.
His eyes are ok.
He needs new glasses.
What is ANA?
Will they let me see his chart?
Can I get a copy of it?
We got the inserts for his sneakers.
He still needs NEWer sneakers.
Is he in a medical type of remission?
What should I ask?
What do YOU ask YOUR child's rheumy?
Help.
I'm not prepared.
I am admitting that.
But I am hoping that within the next 8 days, I get uber prepared.
I need to make a list.
A list of questions.
But what do I ask?
I'm lost.
We've been on this journey for over a year now and I am still lost.
Is he flaring?
Where?
Do we need to go back to weekly methotrexate?
His knees sometimes hurt 2-3 days before the bi-weekly metho shot.
His eyes are ok.
He needs new glasses.
What is ANA?
Will they let me see his chart?
Can I get a copy of it?
We got the inserts for his sneakers.
He still needs NEWer sneakers.
Is he in a medical type of remission?
What should I ask?
What do YOU ask YOUR child's rheumy?
Help.
1.24.2011
Can I have a copy of that?
We go back to Gainesville next month. I'm sitting here reading the posts within the Arthritis group I'm on via FB and wondering if I am not asking the right questions when we are there. I'm also wondering if I should ask for copies of Jackson's records, I know those will cost me.
I'm just wondering if I don't know all the ins and outs of his arthritis. Like I know it's auto immune. And I know the type. But when he got that rash, that's when I began to wonder if I'm doing something wrong or not asking enough. Like, should I have called when that rash was there? Or was going to the pediatrician enough. I mean it's gone now. I will be mentioning it next month though.
We have been within this new world for over a year now and when I read other blogs I think to myself, why don't I know all that info about my kid?
So my question to all of you is this, what are some things I should know about my son and his arthritis? If you would, email me your list of must have questions and must have thing to know to my email @ courtney.amber79@gmail.com.
I plan on printing off your helpful lists so that when we go back to G-ville next month, we'll be more prepared than ever!
Thank you in advance.
I'm just wondering if I don't know all the ins and outs of his arthritis. Like I know it's auto immune. And I know the type. But when he got that rash, that's when I began to wonder if I'm doing something wrong or not asking enough. Like, should I have called when that rash was there? Or was going to the pediatrician enough. I mean it's gone now. I will be mentioning it next month though.
We have been within this new world for over a year now and when I read other blogs I think to myself, why don't I know all that info about my kid?
So my question to all of you is this, what are some things I should know about my son and his arthritis? If you would, email me your list of must have questions and must have thing to know to my email @ courtney.amber79@gmail.com.
I plan on printing off your helpful lists so that when we go back to G-ville next month, we'll be more prepared than ever!
Thank you in advance.
1.07.2011
Prayer
I am not a religious person. I did not grow up going to church every Sunday with my family. In fact, I can count on one hand the number of times I have been in a church. I wasn't even married in a church, I was married in an alley, out side of a bar, NEXT to a big beautiful cathedral. I was however married by a minister.
Having said all that, one may think I do not believe in God. And to be 100% honest with you, my followers and blog readers, I am not sure what it is I believe in. Do I believe in a high power? Yes. Do I believe it to be our Lord and Savior Jesus Christ? Maybe. Do I believe there is a Heaven? I believe there is something. Do I believe in the power of prayer? 100% without a doubt yes. When asked for prayers for ailing friends, family, and others, I most certainly say a little prayer to myself to heal those who are hurting and/or suffering. When my Aunt was dying I prayed A LOT. I made bargains, I pleaded, and I begged. And when my Aunt passed away, I was angry and mad and I felt let down. It took me a long time to move on from her passing, and some days, I don't think I have moved on 100% but deep down I don't want to. When going through pictures, I fight back the tears upon seeing her smiling face looking back at me. I am no longer angry that she is gone because I know that she is no longer in pain. I know that she is watching over my family and when I see a rainbow, it's her letting me know she is there.
This week has been a trying one for my JA Family. Many prayer requests have been made. I have been forced to recognize my blessings. Jackson is doing great. I have not seen any physical signs of joint swelling nor is he complaining of anything. Medicated remission is what some may choose to call this. I have been forced to realize that even though he is still on Humira, Naproxin, Methotrexate, Leucavorin, and Prilosec he is doing well and it's BECAUSE of all that he takes. I don't like that he takes things that suppress his immune system, and I hate that he is on low dose chemo but the fact remains that these drugs are helping him.
Having a child with a chronic illness makes you understand that you have to take the good with the bad. Jackson has not had an infusion is about a year. When we make our trips to Shands, it's to see his doctors, not to have an infusion. Do I know that could all change at any moment? You bet I do. And that is why I count my blessings, and say my prayers for the JA families that are hurting right now and always.
Julie, Rochelle, Heidi, Lana, WilmaSue, Tiffany, Deetra and any momma I may have forgotten, I love you, your children, and your families and I may not comment on what you are going through right now with your children, I am thinking of you and praying. This week, and in previous weeks, things for you guys have been rough. For that I am sorry. To my mommas with kiddos that are doing well, like Jackson, I love you guys too!!
Too many people think arthritis isn't a big deal, too many blow it off like it's nothing. My JA family and I are here to tell you otherwise..........
Having said all that, one may think I do not believe in God. And to be 100% honest with you, my followers and blog readers, I am not sure what it is I believe in. Do I believe in a high power? Yes. Do I believe it to be our Lord and Savior Jesus Christ? Maybe. Do I believe there is a Heaven? I believe there is something. Do I believe in the power of prayer? 100% without a doubt yes. When asked for prayers for ailing friends, family, and others, I most certainly say a little prayer to myself to heal those who are hurting and/or suffering. When my Aunt was dying I prayed A LOT. I made bargains, I pleaded, and I begged. And when my Aunt passed away, I was angry and mad and I felt let down. It took me a long time to move on from her passing, and some days, I don't think I have moved on 100% but deep down I don't want to. When going through pictures, I fight back the tears upon seeing her smiling face looking back at me. I am no longer angry that she is gone because I know that she is no longer in pain. I know that she is watching over my family and when I see a rainbow, it's her letting me know she is there.
This week has been a trying one for my JA Family. Many prayer requests have been made. I have been forced to recognize my blessings. Jackson is doing great. I have not seen any physical signs of joint swelling nor is he complaining of anything. Medicated remission is what some may choose to call this. I have been forced to realize that even though he is still on Humira, Naproxin, Methotrexate, Leucavorin, and Prilosec he is doing well and it's BECAUSE of all that he takes. I don't like that he takes things that suppress his immune system, and I hate that he is on low dose chemo but the fact remains that these drugs are helping him.
Having a child with a chronic illness makes you understand that you have to take the good with the bad. Jackson has not had an infusion is about a year. When we make our trips to Shands, it's to see his doctors, not to have an infusion. Do I know that could all change at any moment? You bet I do. And that is why I count my blessings, and say my prayers for the JA families that are hurting right now and always.
Julie, Rochelle, Heidi, Lana, WilmaSue, Tiffany, Deetra and any momma I may have forgotten, I love you, your children, and your families and I may not comment on what you are going through right now with your children, I am thinking of you and praying. This week, and in previous weeks, things for you guys have been rough. For that I am sorry. To my mommas with kiddos that are doing well, like Jackson, I love you guys too!!
Too many people think arthritis isn't a big deal, too many blow it off like it's nothing. My JA family and I are here to tell you otherwise..........
1.02.2011
And the list just keeps getting longer
Have you noticed anything different about my blog?
If you look to the right---------------------->
You will see that my blog list of Arthritis families has gotten longer. And while I am happy to meet you new people, I do not like the circumstances by which we have found each other. :( Juvenile Arthritis is a very real disease. I do not feel that it receives enough attention. 300,000 children will tell you that it hurts, and that it's scary. Those same 300,000 children will amaze you with their strength and their willingness to fight.
The next time some one asks me who MY hero is I will tell them that it's all of your children, and my child.
PS. I hope to be giving my blog a "makeover" of sorts. So if you come back often you may see a "mess". Pardon the dust for a bit, please, and thank you!
If you look to the right---------------------->
You will see that my blog list of Arthritis families has gotten longer. And while I am happy to meet you new people, I do not like the circumstances by which we have found each other. :( Juvenile Arthritis is a very real disease. I do not feel that it receives enough attention. 300,000 children will tell you that it hurts, and that it's scary. Those same 300,000 children will amaze you with their strength and their willingness to fight.
The next time some one asks me who MY hero is I will tell them that it's all of your children, and my child.
PS. I hope to be giving my blog a "makeover" of sorts. So if you come back often you may see a "mess". Pardon the dust for a bit, please, and thank you!
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