I don't update. I have nothing to update. That's good, right?
But wait, I do have one thing to update. I had to cancel Jackson's eye appointment with CMS. I didn't have a way to get there and I keep forgetting to call and reschedule. I know how important it is. So I will call Monday and reschedule.
We go to G-ville on the 6th of October for Jackson's appointment.
We're hoping to make it to the JA Family connect day on the 18th of this month. If we have the $$ for gas, we'll be there!
9.09.2010
7.14.2010
Another bump in the road that is our life
On Monday, while at summer "camp" Jackson had his eyes checked, for free, by Florida's Vision Quest . They didn't do a full complete check, like to see if the arthritis is doing a number on his eyes, but it was free and lord knows he needed them checked. Guess what? He needs glasses. I'm not surprised. So not only does FL's vision quest do the exam for free, they supply the kids with one pair of glasses, child's choice, for free! And if we want to order a back up pair it's only $40.
We still have an appointment on the 5th with CMS. We'll know more than.
We still have an appointment on the 5th with CMS. We'll know more than.
7.07.2010
Yippee!!
Today was appointment day in The Swamp [Gainesville, for my new readers, is home of the Florida Gators!! We who love them call their home in Gainesville "The Swamp"] Our appointment with Dr. Modica was scheduled for 12:30 at Shands. We arrived earlier [hooray!] and parked at the medical plaza, taking the shuttle over to the Hospital, where Pediatric Rhuematology has moved. We checked in, waited, Jackson was called for his vitals, and after those were taken we waited a bit more. *Bonus while waiting? We got to see Deetra!!*
We were called back to our room and waited for a bit before Dr. Modica came in. We weren't scheduled for an infusion but that can and has changed in a matter of minutes. Our friends Deetra and family and Tiffany and family were in the infusion room where their kiddos were getting their medicine. I made a mental note to make sure I stopped by there to say hello before we left.
Dr. Modica came in and began to check out Jackson, moving his wrists, knees, ankles, arms, legs, neck, pretty much every where. Guess what? The only place where he was hurting and/or swollen was in his wrists!!! NO WHERE ELSE! And we also get to lower his naproxin dose to once a day! I can't tell you how happy that made me, and Jackson too! His combo of drugs is working, and he seems to be getting better. She said that we may even be able to stop the Humira if is he still doing well in 4 months. That and if his labs are good.
We stopped by the infusion room [which is MUCH bigger now] and I found Deetra. Poor Sydney looked sad, broke my heart, that little girl is amazing. Wait, ALL the JRA kids are amazing, and their siblings are pretty amazing too but I am trailing off topic. LOL. So I told Deetra are good news and she was thrilled for us :). I love my JRA family because of this, even though their children may not be doing well, they are happy for the familes who have children that are, and we all go through the ups and downs TOGETHER. Oh and I firmly believe once a member of the JRA family, ALWAYS a member. So after I told Deetra the news, she introduced me to Tiffany, some one that I already considered a friend even before we met today. I told her the news and like Deetra, she was happy for us.
We headed for the check out, made our appointment for October and then headed down to hitch a ride on the shuttle back to the medical plaza. We had a 3pm appointment with GI and were two hours early! We checked in there and didn't wait very long before being called back to a room. The doctor came back shortly there after and asked all kinds of questions. The basic stuff regarding Jackson's JA and then whether or not he's had tummy issues. The type of arthritis that he has can lead to inflammatory bowel disease. Everything checked out OK, he said he was OK with the labs that Dr. Modica was ordering, and then we checked out, making our next appointment for Feb., 8 months down the road! Yay!
Then it was off to the lab for blood work, and then home. Ahhhhh home. Of course that was AFTER my car crapping out on us. Thankfully we were only 4 miles from the Okahumpka Rest Stop/Plaza so we pulled over there and waited for a ride.
I am over joyed with the progress Jackson is making. I am saddened that other members of our JRA family have children who are not making the same progress. All of our children are different though and they all fight this a different way. But they FIGHT, and they don't let Arthur keep them down. Keep them in your prayers, and us too please. This can all take a turn in the opposite direction at any time.
We were called back to our room and waited for a bit before Dr. Modica came in. We weren't scheduled for an infusion but that can and has changed in a matter of minutes. Our friends Deetra and family and Tiffany and family were in the infusion room where their kiddos were getting their medicine. I made a mental note to make sure I stopped by there to say hello before we left.
Dr. Modica came in and began to check out Jackson, moving his wrists, knees, ankles, arms, legs, neck, pretty much every where. Guess what? The only place where he was hurting and/or swollen was in his wrists!!! NO WHERE ELSE! And we also get to lower his naproxin dose to once a day! I can't tell you how happy that made me, and Jackson too! His combo of drugs is working, and he seems to be getting better. She said that we may even be able to stop the Humira if is he still doing well in 4 months. That and if his labs are good.
We stopped by the infusion room [which is MUCH bigger now] and I found Deetra. Poor Sydney looked sad, broke my heart, that little girl is amazing. Wait, ALL the JRA kids are amazing, and their siblings are pretty amazing too but I am trailing off topic. LOL. So I told Deetra are good news and she was thrilled for us :). I love my JRA family because of this, even though their children may not be doing well, they are happy for the familes who have children that are, and we all go through the ups and downs TOGETHER. Oh and I firmly believe once a member of the JRA family, ALWAYS a member. So after I told Deetra the news, she introduced me to Tiffany, some one that I already considered a friend even before we met today. I told her the news and like Deetra, she was happy for us.
We headed for the check out, made our appointment for October and then headed down to hitch a ride on the shuttle back to the medical plaza. We had a 3pm appointment with GI and were two hours early! We checked in there and didn't wait very long before being called back to a room. The doctor came back shortly there after and asked all kinds of questions. The basic stuff regarding Jackson's JA and then whether or not he's had tummy issues. The type of arthritis that he has can lead to inflammatory bowel disease. Everything checked out OK, he said he was OK with the labs that Dr. Modica was ordering, and then we checked out, making our next appointment for Feb., 8 months down the road! Yay!
Then it was off to the lab for blood work, and then home. Ahhhhh home. Of course that was AFTER my car crapping out on us. Thankfully we were only 4 miles from the Okahumpka Rest Stop/Plaza so we pulled over there and waited for a ride.
I am over joyed with the progress Jackson is making. I am saddened that other members of our JRA family have children who are not making the same progress. All of our children are different though and they all fight this a different way. But they FIGHT, and they don't let Arthur keep them down. Keep them in your prayers, and us too please. This can all take a turn in the opposite direction at any time.
7.03.2010
Just a quick update
Never take the good things in your life for granted. It's a hard lesson to learn but one I am trying my best to embrace.
Jackson is doing well. So well he is forgetting to take his twice daily naproxen dose. We are always reminding him. He wants to stop taking it. We go back to the swamp [Gainesville - Home of the Gators!!] on Weds. the 7th. I plan on asking if we can at the very least lower the amount he takes.
We have learned that when things are going well with him, to rejoice. Some families know when a flare will happen, we don't. It can strike at any moment. So while he is well, we smile and be very thankful.
I'll update Weds. night, after we get home and get settled in.
Jackson is doing well. So well he is forgetting to take his twice daily naproxen dose. We are always reminding him. He wants to stop taking it. We go back to the swamp [Gainesville - Home of the Gators!!] on Weds. the 7th. I plan on asking if we can at the very least lower the amount he takes.
We have learned that when things are going well with him, to rejoice. Some families know when a flare will happen, we don't. It can strike at any moment. So while he is well, we smile and be very thankful.
I'll update Weds. night, after we get home and get settled in.
6.21.2010
"Missing"
*This blog is not about JA rather it is about how scary our afternoon was. I simply needed to get it out*
Have you ever thought about how you would feel should your child go "missing"? You watch the news and you hear about missing kids and your heart sinks because you think to yourself "I have no idea how I would ever react should that happen to my family". Today I got to learn exactly how I would react.
Jackson is going to Summer Reading Camp at his school this year. I take him in the morning and he rides the bus home. I figured it was perfect for him to know what things will be like come August when school is back in session and Shawn is at a different school. When school is in session, the kids are usually home about 25-30 min. after they are released and the bus stop is two streets down. So today, the first day of reading camp, I figured the same. They are released at 1:25 so he should be dropped off two streets down from the house 25-30 min. later right? Wrong.
2pm rolls around and nothing. No bus, no Jackson, nothing. I was OK at that point because a storm had just went through so I figured wet roads, crappy drivers, later drop off time. At about 2:15 I called the school. I was told the busses were running late do to some mix ups but she took my name, Jackson's name, my number and then asked me what bus number he rode. Ummm I have no idea because I was never told that information!! She said no problem, that she could get the bus number and she would call me back. 15 min later, at 2:30, Jackson was still not home and she had not called me back.
I called the school again, this time my voice was less calm and I was going into panic mode. A different woman answers the phone and asks me to hold on because she is going to call transportation to she what she can find out. She came back on the line TWICE and asked me if Jackson was home yet, I said no both times and we could both hear the worry in each others voices now. The third time she came back on the phone it wasn't her but a different woman who asked if she could call me back. What was I going to say? No? I said ok and began to pace my front yard. I called my mom in law and that helped a bit.
My child was over an hour late at this point and NO ONE knew where he was. I kept getting "he has to be on the bus" but no one knew that for sure. All those thoughts crept into my head, what if he is hurt? What is he has been kidnapped? WHERE IS HE?! 3pm, give or take, and the school calls me back. He is on the bus, and bus driver missed some stops but she is working her way back. I let out THE biggest sigh of relieve. I called my mom in law back and told her he was accounted for and I would call when he was standing infront of me.
3:15pm my cell rings again and this time it's the bus driver herself. She is on 436 by the Chuck -e- Cheese and wants to know how to get to our house. Are you SERIOUS?!?!?!?! So calmly I give her directions and when I get to the part where I tell her to turn down the street to get to our street she says "We were over there, I dropped off a student right there". So I said well here's the thing, I was never told what bus number let alone WHERE THE STOP WOULD BE! Jackson and I both assumed that the stop would be where it normally is and that I had told Jackson his brother would meet him there. She says ok, that she is sorry and she will drop him off at the stop where she dropped off the other student.
I called the school back and started to tell the office staff that he was on his way home and then I was asked to hold because the asst. principal wanted to speak with me. Turns out he was about a second away from calling Longwood PD because he felt that transportation was dragging their feet on the whole thing. I explained everything to him and he apologized over and over again. Then he asks if the bus driver is dropping him off at the bus stop or the school, I said at the bus stop and he said that transportation told him that she would be dropping him off at the school. I told him that if that happened to call me, I would come get him, and then he asked for a phone call should the bus driver drop him off at the bus stop.
Shawn and I then went to the bus stop and waited for Jackson to get there. 4pm he was safe in my car, two and a half hours AFTER he was released from school. That was the longest 2 and 1/2 hours of my life. The not knowing was horrible. Oh and come to find out, when the bus driver stopped at the bus stop Jackson got upset and said he didn't know how to get home from there. So the bus driver decided to just take him with her and finish out the route. Why she didn't use her cell phone to call her manager and let her/him know of the situation is beyond me.
In the end, he made it home, safe and sound, but believe me when I say that I NEVER want to feel that level of worry again.
Have you ever thought about how you would feel should your child go "missing"? You watch the news and you hear about missing kids and your heart sinks because you think to yourself "I have no idea how I would ever react should that happen to my family". Today I got to learn exactly how I would react.
Jackson is going to Summer Reading Camp at his school this year. I take him in the morning and he rides the bus home. I figured it was perfect for him to know what things will be like come August when school is back in session and Shawn is at a different school. When school is in session, the kids are usually home about 25-30 min. after they are released and the bus stop is two streets down. So today, the first day of reading camp, I figured the same. They are released at 1:25 so he should be dropped off two streets down from the house 25-30 min. later right? Wrong.
2pm rolls around and nothing. No bus, no Jackson, nothing. I was OK at that point because a storm had just went through so I figured wet roads, crappy drivers, later drop off time. At about 2:15 I called the school. I was told the busses were running late do to some mix ups but she took my name, Jackson's name, my number and then asked me what bus number he rode. Ummm I have no idea because I was never told that information!! She said no problem, that she could get the bus number and she would call me back. 15 min later, at 2:30, Jackson was still not home and she had not called me back.
I called the school again, this time my voice was less calm and I was going into panic mode. A different woman answers the phone and asks me to hold on because she is going to call transportation to she what she can find out. She came back on the line TWICE and asked me if Jackson was home yet, I said no both times and we could both hear the worry in each others voices now. The third time she came back on the phone it wasn't her but a different woman who asked if she could call me back. What was I going to say? No? I said ok and began to pace my front yard. I called my mom in law and that helped a bit.
My child was over an hour late at this point and NO ONE knew where he was. I kept getting "he has to be on the bus" but no one knew that for sure. All those thoughts crept into my head, what if he is hurt? What is he has been kidnapped? WHERE IS HE?! 3pm, give or take, and the school calls me back. He is on the bus, and bus driver missed some stops but she is working her way back. I let out THE biggest sigh of relieve. I called my mom in law back and told her he was accounted for and I would call when he was standing infront of me.
3:15pm my cell rings again and this time it's the bus driver herself. She is on 436 by the Chuck -e- Cheese and wants to know how to get to our house. Are you SERIOUS?!?!?!?! So calmly I give her directions and when I get to the part where I tell her to turn down the street to get to our street she says "We were over there, I dropped off a student right there". So I said well here's the thing, I was never told what bus number let alone WHERE THE STOP WOULD BE! Jackson and I both assumed that the stop would be where it normally is and that I had told Jackson his brother would meet him there. She says ok, that she is sorry and she will drop him off at the stop where she dropped off the other student.
I called the school back and started to tell the office staff that he was on his way home and then I was asked to hold because the asst. principal wanted to speak with me. Turns out he was about a second away from calling Longwood PD because he felt that transportation was dragging their feet on the whole thing. I explained everything to him and he apologized over and over again. Then he asks if the bus driver is dropping him off at the bus stop or the school, I said at the bus stop and he said that transportation told him that she would be dropping him off at the school. I told him that if that happened to call me, I would come get him, and then he asked for a phone call should the bus driver drop him off at the bus stop.
Shawn and I then went to the bus stop and waited for Jackson to get there. 4pm he was safe in my car, two and a half hours AFTER he was released from school. That was the longest 2 and 1/2 hours of my life. The not knowing was horrible. Oh and come to find out, when the bus driver stopped at the bus stop Jackson got upset and said he didn't know how to get home from there. So the bus driver decided to just take him with her and finish out the route. Why she didn't use her cell phone to call her manager and let her/him know of the situation is beyond me.
In the end, he made it home, safe and sound, but believe me when I say that I NEVER want to feel that level of worry again.
5.17.2010
Lucky
Juvenile Arthritis (JA): a broad term that encompasses all types of chronic arthritis in children including all the subtypes of JRA and JIA, arthritis associated with SLE, arthritis associated with dermatomyositis, reactive arthritis, etc.
Juvenile Rheumatoid Arthritis (JRA): The American College of Rheumatology (ACR) classification criteria that were developed and validated in 1972 by the ACR There are three subtypes within this classification: oligoarticular (pauciarticular), polyarticular and systemic with further divisions within the first two subtypes. Reference: Brewer et al, Bull Rheum Dis 23: 712, 1972.
Juvenile Idiopathic Arthritis (JIA): Classification criteria proposed by the International League of Associations for Rheumatology (ILAR) task force in 1995 that has seven subtypes: systemic, oligoarticular-persistent, oligoarticular-extended, polyarticular-RF (rheumatoid factor) negative, polyarticular-RF positive, enthesitis-related arthritis, psoriatic arthritis, and other (undifferentiated) arthritis. Reference: Fink CW, J Rheumatol 22: 1566, 1995
-definitions copied and pasted from www.arthritis.org.
Asking yourself why the title "Lucky"? Let me explain.
My son is not 100% healthy. Oh he appears to be from the outside. On the outside, he looks like a regular child, a "normal" 7 year old boy. Too many people think that he is healthy because he runs, jumps, plays, and moves around like a healthy child. Guess what folks? He is only able to do those things because of the meds he is on. Miss a dose of the methotrexate, trust me, he'll pay for that in a day or two. I know because he has missed a dose and 2 days later he couldn't walk because of the flare up. Did you know that methotrexate is CHEMOTHERAPY? Yup. It is. And Humira? The other shot he gets on Friday's? Check out this link http://www.humira.com/JuvenileIdiopathicArthritis/Default.aspx . Not into reading all about it? No worries, let me point out the main thing I want to share with you, "Humira is a TNF-blocker medicine that can lower the ability of your immune system to fight infections." Oh and this too, "There have been cases of unusual cancers in children and teenagers using TNF-blocker medicines." CANCER. Did you see that? It said C.A.N.C.E.R. Patrick and I are giving our son something that can cause CANCER, oh and not just cancer but UNUSUAL cancers. Scary isn't it? Glad you aren't in my shoes? Or Patrick's? Or even Jackson's? Trust me when I say that if there was something else out there that he could take that would work just as well, he would be on it. The sad truth though is that there isn't.
But Jackson is lucky. He is lucky because we have found what works for him. He is lucky because his "cocktail" of meds has helped him to be able to run, jump, play, and be "normal" like any other 7 year kid. He is lucky because he doesn't have to go to Gainesville every week, every 2 weeks, or even every 4 weeks. He is lucky because the last time we were there, they took his blood work and every thing came back good. That means that his levels were where they should be, despite ALL the meds he is on. Yes, Jackson is lucky and after reading about what his friends with JA are going through, I am thanking God right now.
Jackson has a school that understands and "gets it". I haven't experienced what other parents in my JA family have. I haven't had to miss work like so many moms and dads because of a bad flare, one so bad the child can't move because it hurts so much. I haven't had to explain how my child is perfectly "fine" one day and damn near inmobile the next. Jackson has not had to use crutches or a wheelchair.
JA family, I love each and every one of you. I pray that your children, and mine, will one day have a cure. I pray that the meds don't cause more harm than good for our children.
I am here for all of you.
And in the meantime, I will continue to thank God (and my own personal angel) that Jackson is as "healthy" as he is today.
-Also, please note that this blog is not a "rub it in your face" kinda thing. There is a part of me that feels bad that my child is doing so well when so many others are not. WilmaSue told me to never feel that, be thankful for how well he is doing. I want all his friends to feel the way he does everyday. I want all his friends to be able to run and play and not have a flare the next day. I realize how "lucky" we are that he is feeling good, and like WilmaSue told me, I am thankful.
Juvenile Rheumatoid Arthritis (JRA): The American College of Rheumatology (ACR) classification criteria that were developed and validated in 1972 by the ACR There are three subtypes within this classification: oligoarticular (pauciarticular), polyarticular and systemic with further divisions within the first two subtypes. Reference: Brewer et al, Bull Rheum Dis 23: 712, 1972.
Juvenile Idiopathic Arthritis (JIA): Classification criteria proposed by the International League of Associations for Rheumatology (ILAR) task force in 1995 that has seven subtypes: systemic, oligoarticular-persistent, oligoarticular-extended, polyarticular-RF (rheumatoid factor) negative, polyarticular-RF positive, enthesitis-related arthritis, psoriatic arthritis, and other (undifferentiated) arthritis. Reference: Fink CW, J Rheumatol 22: 1566, 1995
-definitions copied and pasted from www.arthritis.org.
Asking yourself why the title "Lucky"? Let me explain.
My son is not 100% healthy. Oh he appears to be from the outside. On the outside, he looks like a regular child, a "normal" 7 year old boy. Too many people think that he is healthy because he runs, jumps, plays, and moves around like a healthy child. Guess what folks? He is only able to do those things because of the meds he is on. Miss a dose of the methotrexate, trust me, he'll pay for that in a day or two. I know because he has missed a dose and 2 days later he couldn't walk because of the flare up. Did you know that methotrexate is CHEMOTHERAPY? Yup. It is. And Humira? The other shot he gets on Friday's? Check out this link http://www.humira.com/JuvenileIdiopathicArthritis/Default.aspx . Not into reading all about it? No worries, let me point out the main thing I want to share with you, "Humira is a TNF-blocker medicine that can lower the ability of your immune system to fight infections." Oh and this too, "There have been cases of unusual cancers in children and teenagers using TNF-blocker medicines." CANCER. Did you see that? It said C.A.N.C.E.R. Patrick and I are giving our son something that can cause CANCER, oh and not just cancer but UNUSUAL cancers. Scary isn't it? Glad you aren't in my shoes? Or Patrick's? Or even Jackson's? Trust me when I say that if there was something else out there that he could take that would work just as well, he would be on it. The sad truth though is that there isn't.
But Jackson is lucky. He is lucky because we have found what works for him. He is lucky because his "cocktail" of meds has helped him to be able to run, jump, play, and be "normal" like any other 7 year kid. He is lucky because he doesn't have to go to Gainesville every week, every 2 weeks, or even every 4 weeks. He is lucky because the last time we were there, they took his blood work and every thing came back good. That means that his levels were where they should be, despite ALL the meds he is on. Yes, Jackson is lucky and after reading about what his friends with JA are going through, I am thanking God right now.
Jackson has a school that understands and "gets it". I haven't experienced what other parents in my JA family have. I haven't had to miss work like so many moms and dads because of a bad flare, one so bad the child can't move because it hurts so much. I haven't had to explain how my child is perfectly "fine" one day and damn near inmobile the next. Jackson has not had to use crutches or a wheelchair.
JA family, I love each and every one of you. I pray that your children, and mine, will one day have a cure. I pray that the meds don't cause more harm than good for our children.
I am here for all of you.
And in the meantime, I will continue to thank God (and my own personal angel) that Jackson is as "healthy" as he is today.
-Also, please note that this blog is not a "rub it in your face" kinda thing. There is a part of me that feels bad that my child is doing so well when so many others are not. WilmaSue told me to never feel that, be thankful for how well he is doing. I want all his friends to feel the way he does everyday. I want all his friends to be able to run and play and not have a flare the next day. I realize how "lucky" we are that he is feeling good, and like WilmaSue told me, I am thankful.
4.29.2010
JA in pictures
This is everything that Jackson takes. The only thing not prescribed are the gummy vitamins. Why take those? Well, when you're on things like methotrexate and humira, you tend to not have much of an immune system. The gummy vitamins have added immune boosters in them.
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