One of my fellow JA mommas has written a blog that expresses all the things I feel. Please click the link and read her entry, JA Guilt - http://scorpi07.blogspot.com/2013/01/ja-guilt.html
Thank you again Sarah.
1.30.2013
1.24.2013
Humira? Remicade? And an IEP!
Humira sucks. It is the devil in our house. Any medication that makes my child angry is not ok with me. Humira has been THE biologic that has helped Jackson but the time has come for us to move onto something else......something less painful. It's been about 2 and 1/2 years and while we are thankful it is still keeping him pretty much flare free, we agreed that the battle we face each and every week is not something we want to continue. Jackson flat out refuses to get the shot. Now I know that some people will say things like "You're the parent, MAKE him get it" or "Why are you letting him dictate whether or not he gets it?". I have answers to those......he is 10, old enough to make the decision if he wants to get the shot or not. He has been told many times that without the Humira, he has a chance to flare. He still refuses. In fact it's been well over a month since his last dose of Humira and he has been doing rather well. He is really good about letting us know when he hurts and he has been taking his mobic as needed and it seems to be doing the job.
Having said all of that, I have been in contact with his rheumy about our concerns and it was agreed that until his appointment next month, we will hold off on Humira. The idea is to see how his joints fair without any sort of biologic. Then one of two things will happen, if he is not showing any signs of his arthritis creeping in we will stay the course of mobic as needed and only that. However, if at his appointment it is discovered that his joints are acting up we will then talk about Remicade, another biologic that is given through IV only. That would likely mean monthly trips to Gainesville for infusions. Surprisingly Jackson would rather do this than get his weekly 40mg of Humira.
Moving onto the IEP. Jackson had a 504 plan in place and the school and his teachers were following it very well. I was noticing some problems in the education department however and felt that maybe Jackson needed an IEP with all his 504 accommodations rolled in. Over the last few months they have been testing him to see where he stands academically. This morning we had the meeting where we learned the results of everything. It was determined that he does indeed need the IEP and it will be under the classification of other health impaired. ALL of his accommodations from his 504 have been rolled into this IEP and therefore his 504 plan is discontinued. I was VERY happy with how the meeting went and I am over joyed that everyone is so understanding. I was prepared for a fight, having heard the horror stories from friends. Currently there isn't a need for a fight but when he starts middle school in August, I will no doubt have a fight on my hands but I am prepared. :)
Having said all of that, I have been in contact with his rheumy about our concerns and it was agreed that until his appointment next month, we will hold off on Humira. The idea is to see how his joints fair without any sort of biologic. Then one of two things will happen, if he is not showing any signs of his arthritis creeping in we will stay the course of mobic as needed and only that. However, if at his appointment it is discovered that his joints are acting up we will then talk about Remicade, another biologic that is given through IV only. That would likely mean monthly trips to Gainesville for infusions. Surprisingly Jackson would rather do this than get his weekly 40mg of Humira.
Moving onto the IEP. Jackson had a 504 plan in place and the school and his teachers were following it very well. I was noticing some problems in the education department however and felt that maybe Jackson needed an IEP with all his 504 accommodations rolled in. Over the last few months they have been testing him to see where he stands academically. This morning we had the meeting where we learned the results of everything. It was determined that he does indeed need the IEP and it will be under the classification of other health impaired. ALL of his accommodations from his 504 have been rolled into this IEP and therefore his 504 plan is discontinued. I was VERY happy with how the meeting went and I am over joyed that everyone is so understanding. I was prepared for a fight, having heard the horror stories from friends. Currently there isn't a need for a fight but when he starts middle school in August, I will no doubt have a fight on my hands but I am prepared. :)
11.21.2012
Three Years this Month
*If you are here via http://thisbighappy.com/, thank you for visiting!! I hope you will find our story informative. And from my family to yours, Welcome!!*
This month marks three years since our youngest son was diagnosed with Idiopathic Juvenile Arthritis (type polyarticular). We've had some ups, we've had some downs, and we've learned a ton but are still learning more every day. Through this journey my family has gained so much in regards to love and understanding. When Jackson was first diagnosed, we felt alone. Arthritis?! What?! Children don't get arthritis. I am here to tell you that Kids Get Arthritis Too! There is a community of families that we have gained that "get it". I could not be more thankful for this.
Lately Jackson has been doing ok. I think he has finally figured out that he has to take his meds when he is supposed to, every 7 days. He is on Humira (I'm sure you've seen the commercials, if not go here). While I hate this med and the stress and tears it causes Jackson, it has been THE biologic to help him. I worry about the side effects, as there are many, but we had to make a decision. Without this medicine, Jackson may not be able to function like a normal 10 year old child. We are blessed that Jackson was diagnosed quickly, most children are not and the damage usually is or is on the way to being done.
While you're here reading our story, please take some time to read some our friend's blogs (links located to your left). Juvenile Arthritis is very real. Yes, my child may LOOK fine to you but on the inside, his body is fighting against him on a daily basis.
There is NO cure and that is something we all our fighting to change.
This month marks three years since our youngest son was diagnosed with Idiopathic Juvenile Arthritis (type polyarticular). We've had some ups, we've had some downs, and we've learned a ton but are still learning more every day. Through this journey my family has gained so much in regards to love and understanding. When Jackson was first diagnosed, we felt alone. Arthritis?! What?! Children don't get arthritis. I am here to tell you that Kids Get Arthritis Too! There is a community of families that we have gained that "get it". I could not be more thankful for this.
Lately Jackson has been doing ok. I think he has finally figured out that he has to take his meds when he is supposed to, every 7 days. He is on Humira (I'm sure you've seen the commercials, if not go here). While I hate this med and the stress and tears it causes Jackson, it has been THE biologic to help him. I worry about the side effects, as there are many, but we had to make a decision. Without this medicine, Jackson may not be able to function like a normal 10 year old child. We are blessed that Jackson was diagnosed quickly, most children are not and the damage usually is or is on the way to being done.
While you're here reading our story, please take some time to read some our friend's blogs (links located to your left). Juvenile Arthritis is very real. Yes, my child may LOOK fine to you but on the inside, his body is fighting against him on a daily basis.
There is NO cure and that is something we all our fighting to change.
1.23.2012
Ramblings
My lack of updates is sad. I know.
On more than one occasion I have started a new post and decided not to continue with it. I don't know what my problem is. Maybe I am rebelling against my own blog. Who knows.
I have nothing new to report. Jackson is still doing well. Let me be honest here. His case has never been bad. I mean it was in the beginning but because he was diagnosed quickly/early and because we found what works for him fast, he has been a mild case to say the least. He has several friends that are not doing so well and my heart breaks for these kids. I want to wave a magic wand over them, and Jackson too, and make this all go away for them and their families. But then I change my mind. I know that sounds awful but here me out on this one....
If it weren't for this HORRIBLE disease (yes, disease. This is not JUST arthritis, this is one's own body attacking itself) I would not have so many wonderful people in my life. My family has bonds with other JA families that no one can ever understand. This disease is bad, it hurts, and I hate it BUT without it, I would not have my JA family. Together we are fighting for a cure.
Wow, this blog has turned into me rambling. I have so much I want to say, so much I want to talk about it but I don't know how to voice it. I am always afraid that I will say the wrong thing. So sometimes I say nothing at all.
OK, I'm done.
Love to you all.
On more than one occasion I have started a new post and decided not to continue with it. I don't know what my problem is. Maybe I am rebelling against my own blog. Who knows.
I have nothing new to report. Jackson is still doing well. Let me be honest here. His case has never been bad. I mean it was in the beginning but because he was diagnosed quickly/early and because we found what works for him fast, he has been a mild case to say the least. He has several friends that are not doing so well and my heart breaks for these kids. I want to wave a magic wand over them, and Jackson too, and make this all go away for them and their families. But then I change my mind. I know that sounds awful but here me out on this one....
If it weren't for this HORRIBLE disease (yes, disease. This is not JUST arthritis, this is one's own body attacking itself) I would not have so many wonderful people in my life. My family has bonds with other JA families that no one can ever understand. This disease is bad, it hurts, and I hate it BUT without it, I would not have my JA family. Together we are fighting for a cure.
Wow, this blog has turned into me rambling. I have so much I want to say, so much I want to talk about it but I don't know how to voice it. I am always afraid that I will say the wrong thing. So sometimes I say nothing at all.
OK, I'm done.
Love to you all.
10.24.2011
Goodbye Naproxin, Hello Mobic!
Holy lack of updates Batman! I apologize for that.
Let's see, where to begin.....
Oh! I know. Let's begin with Jackson's most recent rheumy appointment. It was on the 14th of this month and it went very well! He had been complaining of knee pain (in both knees) since starting school. As you may remember, he is in a new school and it's two stories. Third, fourth, and fifth graders are upstairs, along with music and art. But P.E., cafeteria, nurse, office, library, and more are on the first floor. There IS an elevator and I was worried that one of two things would happen. 1.) He would refuse to use it because he wants to be like every one else. or 2.) He is going to use it exclusively and never use the stairs. He does a combo of both. And my worry that he would keep quiet when and if he was ever in pain? Yeah, that's out the window as well. He always tells his teacher (s) and the staff when he hurts. Yay for self advocating!!
So, back to that appointment. We mentioned the knee pain to the doc and she asked about the naproxin. Does he take it twice a day like he should? That would be a big fat NO. I remind him time and time again and he forgets. I also think that after almost TWO years of being on it, his body has built up a tolerance and it's no longer working. His doctor mention Mobic, like naproxin but he would only have to take it once a day, at night. And I have heard from other parents that their children are on it and it's working well for them. I have high hopes for it but also worry that a tolerance will be built up against it too. But for now, well for now, it's Mobic!
Other than the med change, Jackson got his flu shot and the normal blood draw for labs. We go back in February!
In other news, Jackson and I volunteered for The Arthritis Foundation this past Saturday. It was a good time and we got to meet some new friends. The adult honoree for the Jingle Bell Run/Walk in December was there and meeting her was special. She takes Humira and hates it just as much as Jackson. I am hoping to stay in contact with her and her husband, thank goodness for Facebook! And I think because of her, Jackson was able to do his Humira shot Saturday night with no fight. Thank you Suzy!!
One more thing. We have several families that are dealing with very tough things right now, their kiddos are not doing so well. When you say your prayers, say a little prayer for our JA families. These children are tough, brave, and strong. I admire them.
Let's see, where to begin.....
Oh! I know. Let's begin with Jackson's most recent rheumy appointment. It was on the 14th of this month and it went very well! He had been complaining of knee pain (in both knees) since starting school. As you may remember, he is in a new school and it's two stories. Third, fourth, and fifth graders are upstairs, along with music and art. But P.E., cafeteria, nurse, office, library, and more are on the first floor. There IS an elevator and I was worried that one of two things would happen. 1.) He would refuse to use it because he wants to be like every one else. or 2.) He is going to use it exclusively and never use the stairs. He does a combo of both. And my worry that he would keep quiet when and if he was ever in pain? Yeah, that's out the window as well. He always tells his teacher (s) and the staff when he hurts. Yay for self advocating!!
So, back to that appointment. We mentioned the knee pain to the doc and she asked about the naproxin. Does he take it twice a day like he should? That would be a big fat NO. I remind him time and time again and he forgets. I also think that after almost TWO years of being on it, his body has built up a tolerance and it's no longer working. His doctor mention Mobic, like naproxin but he would only have to take it once a day, at night. And I have heard from other parents that their children are on it and it's working well for them. I have high hopes for it but also worry that a tolerance will be built up against it too. But for now, well for now, it's Mobic!
Other than the med change, Jackson got his flu shot and the normal blood draw for labs. We go back in February!
In other news, Jackson and I volunteered for The Arthritis Foundation this past Saturday. It was a good time and we got to meet some new friends. The adult honoree for the Jingle Bell Run/Walk in December was there and meeting her was special. She takes Humira and hates it just as much as Jackson. I am hoping to stay in contact with her and her husband, thank goodness for Facebook! And I think because of her, Jackson was able to do his Humira shot Saturday night with no fight. Thank you Suzy!!
One more thing. We have several families that are dealing with very tough things right now, their kiddos are not doing so well. When you say your prayers, say a little prayer for our JA families. These children are tough, brave, and strong. I admire them.
7.03.2011
Vocalpoint
Hey ya'll! How is everyone on this fine 4th of July weekend?
Quick update on my kiddo - He has not had MTX in about 3 weeks and he is doing well. He does complain of knee pain in the evenings but once he's reminded to take his Naproxin, he usually feels better soon after that. Tonight, July 3rd, he will start his new higher dosage of Humira, 40mg. I'm nervous, it's 20 more mg that what his body is used to. Heck, it's 20 more mg that what HE is used to. He will get Humira every two weeks from here on out and I am hopeful that we won't have to go back to MTX. That is not a nice drug and it makes my normal 8 year old mad and angry.
Now to talk about Vocalpoint. This website is where one can get free samples, take surveys, read articles with valuable information, join in on message board conversations and much more. I will be honest with you and admit that I often forget I am even a member of Vocalpoint. A few days ago, when I checked my mail, I was reminded. I recieved a free full size bottle of Downy Unstopables.
Quick update on my kiddo - He has not had MTX in about 3 weeks and he is doing well. He does complain of knee pain in the evenings but once he's reminded to take his Naproxin, he usually feels better soon after that. Tonight, July 3rd, he will start his new higher dosage of Humira, 40mg. I'm nervous, it's 20 more mg that what his body is used to. Heck, it's 20 more mg that what HE is used to. He will get Humira every two weeks from here on out and I am hopeful that we won't have to go back to MTX. That is not a nice drug and it makes my normal 8 year old mad and angry.
Now to talk about Vocalpoint. This website is where one can get free samples, take surveys, read articles with valuable information, join in on message board conversations and much more. I will be honest with you and admit that I often forget I am even a member of Vocalpoint. A few days ago, when I checked my mail, I was reminded. I recieved a free full size bottle of Downy Unstopables.
This product is brand new and only in select markets right now. It comes in two scents, Fresh and Lush. I received Fresh and at first I wasn't sure how this was going to work. It turns out it's simple, just fill the cap with as much or as little as you want, toss it into the washer (before tossing in clothes and detergent), and that's it! It's safe for front loaders and traditional top loaders, also HE friendly too. I was hesitant. But upon retreiving the clothes from the dryer I was shocked. They smelled great! I also have a dryer bar in my dryer and the Downy Unstopables smell was very prominent over it. Overall it's a pretty awesome product.
6.24.2011
The one where we tell methotrexate to F off.........
Today, my readers, was rheumy appointment day. I am pretty awesome and made it to Shands in an hour and a half, go me. :)
But seriously...we got some news today that I thought we'd never hear.
If you'll remember, four months ago at our last visit, the idea of Jackson stopping the MTX was brought up. I was a mixture of emotions, wondering if that would and could really work and super excited to get rid of one shot. The other option was to keep the MTX and take Humira to every two weeks with the MTX.
Today, I am happy to report that not only are we able to tell MTX to F off but we also get to take Humira to every two weeks!!!! We are upping the Humira from 20 mg to 40mg but if that means he only gets a shot every two weeks then we'll take it!!
His wrists and ankles are still slightly stiff but not enough that it bothers him. He has been complaining of knee pain at night however once he takes his Naproxin, he's usually good.
The "R" word was never said today. Nor was it considered. But deep down I feel that we are going in that direction, one step at a time.
In about a month we will be able to see just what the Humira can do without the MTX. Dr. E said it takes about a month for the MTX to get out of his system so we'll watch and wait.
But we'll also celebrate, even if it's a small celebration. =)
But seriously...we got some news today that I thought we'd never hear.
If you'll remember, four months ago at our last visit, the idea of Jackson stopping the MTX was brought up. I was a mixture of emotions, wondering if that would and could really work and super excited to get rid of one shot. The other option was to keep the MTX and take Humira to every two weeks with the MTX.
Today, I am happy to report that not only are we able to tell MTX to F off but we also get to take Humira to every two weeks!!!! We are upping the Humira from 20 mg to 40mg but if that means he only gets a shot every two weeks then we'll take it!!
His wrists and ankles are still slightly stiff but not enough that it bothers him. He has been complaining of knee pain at night however once he takes his Naproxin, he's usually good.
The "R" word was never said today. Nor was it considered. But deep down I feel that we are going in that direction, one step at a time.
In about a month we will be able to see just what the Humira can do without the MTX. Dr. E said it takes about a month for the MTX to get out of his system so we'll watch and wait.
But we'll also celebrate, even if it's a small celebration. =)
6.11.2011
An update, sorta.
Hey people!
I apologize for the lack of updates. Things have been...well not crazy, but not really slow either.
We recently had our Arthritis Walk! It was held in Lake Eola and I think it went wonderfully. We had a "raffle" and raised around $400 with just that alone! I also won, in a round about way, a beautiful Vera Bradley purse and change purse. Thank you again Donna! Love you! Here is a picture of some of the events and people that attended the walk....
I loved being on the committee (even though I slacked some times) and thoroughly enjoyed every one's company! I can't wait for next year's walk!
I also had an auction basket for The Arthritis Foundation and although I had hoped it would bring in big money, it ended up bringing in only $20. Ya know what though? That's $20 more dollars that The Arthritis Foundation has for research! And I also have two other donations to add to Team Apple Jacks too! We have raised $338 so far!!
Next up for us is Jackson rheumy appointment on the 24th.
I apologize for the lack of updates. Things have been...well not crazy, but not really slow either.
We recently had our Arthritis Walk! It was held in Lake Eola and I think it went wonderfully. We had a "raffle" and raised around $400 with just that alone! I also won, in a round about way, a beautiful Vera Bradley purse and change purse. Thank you again Donna! Love you! Here is a picture of some of the events and people that attended the walk....
I also had an auction basket for The Arthritis Foundation and although I had hoped it would bring in big money, it ended up bringing in only $20. Ya know what though? That's $20 more dollars that The Arthritis Foundation has for research! And I also have two other donations to add to Team Apple Jacks too! We have raised $338 so far!!
Next up for us is Jackson rheumy appointment on the 24th.
5.01.2011
Arthritis Awareness Month and an auction!!
First and foremost, May is Arthritis Awareness Month. My passion, well one of them, is to make the world aware that Kids Get Arthritis Too!! Please check out this website, early detection is the key when it comes to our children. The longer it takes to get a diagnosis, the more it is likely that damage will be done.
Wanna have the chance to bid on an awesome basket of goodies AND help out the Arthritis Foundation too?! Fantastic!! But before I present the basket and all the details, I need to thank Amy Cunningham for the idea and I also need to thank Elizabeth Pascoe for approaching me with the idea and getting all the items together. And now, without further ado, here is the basket and all the details!
In this basket are items from Mary Kay, For Your Pleasure, Tastefully Simple, Partylite, and Thirty One. Together, all items are valued at over $100. Now for the details......The auction starts today and will end at 9am on May 31st. If you would like to place your bid, please email me at courtney.amber79@gmail.com. I will keep track of all the emails/bids and the highest bidder will be notified by noon on the 31st. There are a few ways to get the money to the Arthritis Foundation. You can send me a check and I will be sure to get it delivered to the Central Florida Office or you can go to our Team Walk page and donate the winning amount that you bid in honor of Jackson and Team Apple Jacks. Once I have received the money or you have made the donation via the walk page, I will get with you and present you with your basket of goodies (if you're local, lol) or I will get them in the mail to you!
Basket contents are as follows:
Partylite - Apricot Daisy Pillar Courtesy of Dawn Beske 407-782-8704 dtbeske@aol.com www.partylite.biz/dawnbeske
Tastefully Simple - Twisty Grahams Courtesy of Jean Morgan 571-277-0221 jmorganva4@yahoo.com www.tastefullysimple.com/web/jmorgan1
Mary Kay - Satin Lips Courtesy of Evette Ruiz 321-689-1249 evetteruiz@marykay.com www.marykay.com/evetteruiz
Thirty-One - Small Tote Courtesy of Sherry Wallace 863-661-4615 sherryw725@hotmail.com www.mythirtyone.com/53299
FYP - Splash, Sexy Suds, Morrocan Nights hand and body quench Courtesy of Elizabeth Pascoe 352-250-1542 elizabethfyp@gmail.com www.foryourpleasure.com/partywithelizabeth
Happy Bidding!!
Wanna have the chance to bid on an awesome basket of goodies AND help out the Arthritis Foundation too?! Fantastic!! But before I present the basket and all the details, I need to thank Amy Cunningham for the idea and I also need to thank Elizabeth Pascoe for approaching me with the idea and getting all the items together. And now, without further ado, here is the basket and all the details!
Basket contents are as follows:
Partylite - Apricot Daisy Pillar Courtesy of Dawn Beske 407-782-8704 dtbeske@aol.com www.partylite.biz/dawnbeske
Tastefully Simple - Twisty Grahams Courtesy of Jean Morgan 571-277-0221 jmorganva4@yahoo.com www.tastefullysimple.com/web/jmorgan1
Mary Kay - Satin Lips Courtesy of Evette Ruiz 321-689-1249 evetteruiz@marykay.com www.marykay.com/evetteruiz
Thirty-One - Small Tote Courtesy of Sherry Wallace 863-661-4615 sherryw725@hotmail.com www.mythirtyone.com/53299
FYP - Splash, Sexy Suds, Morrocan Nights hand and body quench Courtesy of Elizabeth Pascoe 352-250-1542 elizabethfyp@gmail.com www.foryourpleasure.com/partywithelizabeth
Happy Bidding!!
4.13.2011
2011 Arthritis Walk
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!
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!
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!
12.28.2010
Spiraling out of......control?
No, it's not control that I am spiraling out of. I thought that was it but now I know it's def. not control. But what is it then?
I know this blog is supposed to be about my son and our journey with juvenile arthritis. I have another blog that I use via live journal but it's private and I have found that most, if not all, of my friends use blogger. So forgive me but this blog will not be about Jackson and his arthritis.
I feel that I am loosing my grip on my life again. This has happened before, not too long ago, but I was able to pull myself out of it. I feel like nothing I am doing is right, or correct. I know that I am not alone on this journey but many many days I feel exactly that. I have days when I don't feel like I don't connect to any one. I have moments when I feel alone and lost. I feel like my best days are not really my best and my worst days are just plain ol garbage.
I have friends. And I love them dearly but the fact is life gets in the way and we have not seen each other in quite some time and that saddens me.
Christmas has come and gone and it was nice to spend time with family but I am ready to pack it all away for another year.
I want to move but quite frankly we can not afford to do that at this time. I love my neighborhood but I would love to have more space. (and there is a part of me that would love to get away from the drama that is my neighbor across the street) I found out this week that the family I work for has suffered a job loss. I asked today if she would still need me and she said here and there. I guess working here and there is better than not working at all but I crave full time, Monday through Friday, work. I'll continue to do as I have, apply, apply, apply.
I know this blog is supposed to be about my son and our journey with juvenile arthritis. I have another blog that I use via live journal but it's private and I have found that most, if not all, of my friends use blogger. So forgive me but this blog will not be about Jackson and his arthritis.
I feel that I am loosing my grip on my life again. This has happened before, not too long ago, but I was able to pull myself out of it. I feel like nothing I am doing is right, or correct. I know that I am not alone on this journey but many many days I feel exactly that. I have days when I don't feel like I don't connect to any one. I have moments when I feel alone and lost. I feel like my best days are not really my best and my worst days are just plain ol garbage.
I have friends. And I love them dearly but the fact is life gets in the way and we have not seen each other in quite some time and that saddens me.
Christmas has come and gone and it was nice to spend time with family but I am ready to pack it all away for another year.
I want to move but quite frankly we can not afford to do that at this time. I love my neighborhood but I would love to have more space. (and there is a part of me that would love to get away from the drama that is my neighbor across the street) I found out this week that the family I work for has suffered a job loss. I asked today if she would still need me and she said here and there. I guess working here and there is better than not working at all but I crave full time, Monday through Friday, work. I'll continue to do as I have, apply, apply, apply.
12.27.2010
Ch Ch Ch Changes
About a month ago, FL had a cold snap. It was during this time that a mysterious rash appeared on Jackson's body. It was a one shot week and I noticed it as I was putting the emla cream on his arm. His arm felt very prickly and when I turned him around I saw the rash. It covered his back but it wasn't very red or raised. My first thought was maybe he was having an allergic reaction to the change in body wash. I took a picture of it and posted it to my arthritis friends group on FB to get some feedback. I had remembered seeing a picture of another child with a similer looking rash. Turns out it was just a case of extremely dry skin with the other child so I was inclined to think the same about Jackson. When I noticed the rash first, it was a Sunday, and by Tuesday it still wasn't gone but it didn't look any worse. I should mention that it didn't look any better either. I called the pediatrician Tuesday morning and made an appointment for that evening.
Jackson still has the molluscum and I was sorta concerned about that as well so I mentioned that to the Doctor as well. Turns out the molluscum were doing ok and I can proudly say that at this moment they are clearing up and going away! The other mysterious rash though? Yeah, she was inclined to think it was extremely dry skin and gave us a script for some hydrocortizone cream. She also gave us some samples of Cetaphil and some recommendations. I bought the Cetaphil bar soap but had to wait to get him some lotion until Patrick got paid. While waiting for that, the rash got worse and it began to spread. I began to worry.
Patrick got paid and I bought some Suave Lotion for extremely dry skin. For about a week and a half, I lathered Jackson up in the am and again after his nightly shower. In the mean time I began to wonder if Jackson had yet another type of arthritis. So I began the research for psoriatic arthritis. I looked at pictures and I read all the information my brain could take. I talked to my arthritis family and got their feedback as well. I found that people with psoriatic arthritis suffer from what is often referred to as "sausage" fingers and toes. BINGO! When Jackson was first diagnosed over a year ago he had the sausage like fingers and toes. I guess because psoriasis doesn't really run in our family it wasn't even a thought in any one's head. That and the rash hadn't presented its self yet. In speaking with another mom I found out that the rash could take up to 10 years to show!! 10 YEARS people!
I don't want to self diagnose but I really believe that Jackson has psoriatic arthritis. He was initially diagnosed with polyarticular.
His next appointment his Feb. 16th. and I hope to ask the Doctor a lot of questions and come out with a lot of answers! Wish us luck!
(I should also mention that despite the colder weather FL has been having, Jackson is doing and feeling well.)
Jackson still has the molluscum and I was sorta concerned about that as well so I mentioned that to the Doctor as well. Turns out the molluscum were doing ok and I can proudly say that at this moment they are clearing up and going away! The other mysterious rash though? Yeah, she was inclined to think it was extremely dry skin and gave us a script for some hydrocortizone cream. She also gave us some samples of Cetaphil and some recommendations. I bought the Cetaphil bar soap but had to wait to get him some lotion until Patrick got paid. While waiting for that, the rash got worse and it began to spread. I began to worry.
Patrick got paid and I bought some Suave Lotion for extremely dry skin. For about a week and a half, I lathered Jackson up in the am and again after his nightly shower. In the mean time I began to wonder if Jackson had yet another type of arthritis. So I began the research for psoriatic arthritis. I looked at pictures and I read all the information my brain could take. I talked to my arthritis family and got their feedback as well. I found that people with psoriatic arthritis suffer from what is often referred to as "sausage" fingers and toes. BINGO! When Jackson was first diagnosed over a year ago he had the sausage like fingers and toes. I guess because psoriasis doesn't really run in our family it wasn't even a thought in any one's head. That and the rash hadn't presented its self yet. In speaking with another mom I found out that the rash could take up to 10 years to show!! 10 YEARS people!
I don't want to self diagnose but I really believe that Jackson has psoriatic arthritis. He was initially diagnosed with polyarticular.
His next appointment his Feb. 16th. and I hope to ask the Doctor a lot of questions and come out with a lot of answers! Wish us luck!
(I should also mention that despite the colder weather FL has been having, Jackson is doing and feeling well.)
12.24.2010
The End of 2010
Here's wishing you, my readers, and your families a very happy holiday.
Enjoy your families and make a million memories!
Enjoy your families and make a million memories!
11.26.2010
One Year
Yesterday marked our one year anniversary. November 25th, 2009 Jackson was diagnosed with JIA. I wanted to blog last night but I had family in town and my siblings spent the night at my house so I hung out with them and as it turns out, spent some quality time with them that I am not getting tonight. Tonight they were supposed to spend the night again but that didn't work out and I am sad about it.
But I digress. November 25th is a day that we will never forget.
I am sad. I am thankful. I am a mixture of emotions right now that I can not convey into words. I miss my siblings, am angry with my mother, sad for my children, and on minimal speaking terms with my husband.
Thanksgiving was different this year.
I am hoping that Christmas will not be but some thing tells me otherwise.
But I digress. November 25th is a day that we will never forget.
I am sad. I am thankful. I am a mixture of emotions right now that I can not convey into words. I miss my siblings, am angry with my mother, sad for my children, and on minimal speaking terms with my husband.
Thanksgiving was different this year.
I am hoping that Christmas will not be but some thing tells me otherwise.
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