tag:blogger.com,1999:blog-10870780319258148982024-02-20T08:39:24.513-05:00Jacob's uveitis and JRA JourneyJacob's diagnosis of Juvenile Rheumatoid Arthritis at
age 5 until present day. The everyday journey of living
with a child that has a chronic illness.Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.comBlogger184125tag:blogger.com,1999:blog-1087078031925814898.post-23051480455701022812015-05-19T22:09:00.002-04:002015-05-19T22:09:58.190-04:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcbTN2O8HUDUJ2mRTbroWzid-rE8vg66LFtHp0JXPigKKyYOTibi1ICcH4Xw5wwdpOVPxp6Egn-qB0-znyImwS7hHL24Wx2sXbe7sMpVmvBDPuoCObJOj1F3CxkiG2nxhtBIniIVdQMISo/s1600/jkkk.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcbTN2O8HUDUJ2mRTbroWzid-rE8vg66LFtHp0JXPigKKyYOTibi1ICcH4Xw5wwdpOVPxp6Egn-qB0-znyImwS7hHL24Wx2sXbe7sMpVmvBDPuoCObJOj1F3CxkiG2nxhtBIniIVdQMISo/s320/jkkk.JPG" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9gCCddNcq-6KH_4g9iwliZXMYnBLfIbALJ_LP5hC-4D5a4frAR0Vf4uwQf0e0Pb7nSjIIc95oKJ61WKAj8H6J7ITMs7PTJLkXJJj1OhTWWLTSiwjm1DtDefY5ygjs7fT4uNtXMdZgFhHm/s1600/jmmn.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9gCCddNcq-6KH_4g9iwliZXMYnBLfIbALJ_LP5hC-4D5a4frAR0Vf4uwQf0e0Pb7nSjIIc95oKJ61WKAj8H6J7ITMs7PTJLkXJJj1OhTWWLTSiwjm1DtDefY5ygjs7fT4uNtXMdZgFhHm/s320/jmmn.JPG" width="240" /></a><span style="font-size: large;"> </span><br />
<span style="font-size: large;">MAY 2015<span style="font-size: small;">. </span></span><br />
<span style="font-size: large;"><span style="font-size: small;"><span style="font-size: large;"><span style="font-size: small;">It has been a year since I last updated this </span></span>blog. Life goes by and time moves on. </span></span><br />
<span style="font-size: large;"><span style="font-size: small;">Jacob is now 16 years old. He has walked this journey of Juvenile arthritis for 11 years now. It is part of his life. As he has gotten older the challenges of being a teen with this disease has been tough. To be honest he is really sick of dealing with everything that this disease has brought. He is sick of doctor appointments. he is sick of medicine that makes him feel awful and most of all he is sick of always being in pain. I can't say I blame him. Being a teen, he is hoping to get a job soon, but he worries that he will be in pain when working. The problem with jobs for teens is that they all seem to require being on your feet for an extended time. He has intense pain in his heels when he stands for long and I am not sure he will be able to do this. We also worry </span></span>that sharing his medical condition with a prospective employer will be not help his chances of getting a job.<br />
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So what is going on with his JA at the moment? Well he has completed 2 1/2 years of Remicade and Methotrexate therapy combination. His eyes are clear at the moment, off all drops. His joints on the other hand are not doing so well. He still complains of pains here and there. His back, hip, toes, fingers etc. He is supposed to be getting Remicade every four weeks , but he has not been very good with keeping the schedule. There has been some days when he was supposed to go in for his treatment and he has refused to go. Trips to the hospital have been tough for him. What kid wants to go lay in bed for hours in a hospital to receive medication so you can be a kid? After a few appointments missed and the emotional toll this has taken on him and myself, I requested to have his Remicade infusion at home. The hospital room moved to our home! This past week he had his first infusion at home. It went perfectly! All of the supplies were hand delivered the day before. I can't believe how much stuff came. The Remicade was interesting. It was in 9 small vials. It needed to be mixed with sterile water and infused over 2 1/2 hours. A very nice infusion nurse came and did his treatment. She was over for HOURS. It's still such a long process. He took his premeds, Tylenol and Hydrocortisone, then waited for the numbing cream to work, placing his IV then blood draws, then the med infusion, then finally we had to watch for a reaction for 30 minutes after the infusion. We are relieved all went well at home. Jacob will continue to have the infusions at home as long as needed every four weeks and he will continue to see the eye specialist and rheumatologist every 8 weeks. <br />
Well that's the update for now! PLEASE PRAY FOR A CURE so that the 300,000 children living with this disease can live pain free. Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com1tag:blogger.com,1999:blog-1087078031925814898.post-45015160728247496662014-02-02T10:25:00.000-05:002014-02-02T10:25:26.307-05:00 2014 Happy New Year! 10 years with arthritis and 6 years since the uveitis diagnosisJust wanted to give a quick update. Jacob just passed his 1 year mark on Remicade. He started February 1, 2013. Seems like the year went very quickly! January 22 he had his infusion and saw the rheumatologist. All is still going very well. His joints seem to be doing okay. He did have an xray of his left knee though, just to rule out an issues. His left knee has been his main issue all along. If you remember he had a synovectomy done on it when he was just 9 years old. He complains of it here and there, but nothing major. He was sick a month ago and it did stiffen, but it has been okay since. We have not heard any news on the xray, so no news is good news. The rheumatologist moved his infusions from 6 weeks to 8 weeks. I'm all for pushing it out a little longer. If his eyes or joints become an issue, we will go back to more frequent infusions. His eye appointment is a week from Wednesday. I don't plan on hearing anything other than NO CELLS". Especially since he just had his infusion. Oh one last thing, the nurses at Tufts are AMAZING! They hit the vein on the first shot. <br />
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<tr><td class="tr-caption" style="text-align: center;">It's just arthritis, right?<br />
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Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com0tag:blogger.com,1999:blog-1087078031925814898.post-5488431071424296062013-11-01T19:51:00.000-04:002013-11-01T19:51:21.139-04:00November 1, 2013 updateI haven't updated in a little while and figured that today would be a good day to share what has been going on. Jacob is coming up on 10 years since his diagnosis of arthritis. There have been many ups and downs along the way. Recently, we have been going through some downs again. Let me start with an update on his arthritis. Just a few weeks ago Jacob saw his rheumatologist and he is still<br />
continuing to have some issues with that one knee. His left knee. There is fluid present. He had recently been complaining that it is bothering him when he stands for a long time. The rheumatologist also feels as though there is still something going on with his left hip too. It is still really stiff. She decided instead of touching the Remicade dose, that she would up his methotrexate. So a few weeks ago we upped that med. The day after we saw the rheumatologist Jacob was scheduled for his Remicade. He has been on Remicade since February and had been doing well with the infusion aside from a few times of them struggling to find the vein. That day that he went in for his scheduled infusion they were unable to get a IV line in. After quite a few pokes and Jacob in pain, we decided to try again the following week. So last week we returned to the infusion center at his eye specialist and they tried once again to start the IV. No luck again. Jacob was in tears. It is so heartbreaking for a mother to watch their child go through a procedure like this and not even have success. My heart was breaking for him. So we left for the second time without him being able to get the med that he needs so desperately. Without this medication he is in danger of losing his eye sight and not being able to walk! The doctor decided that Jacob should get a port and felt it should be soon. The longer he would be off Remicade, the more chance he could get as reaction to it when it was restarted. Jacob was very upset with this news. He did not want a port. He was adamant that he was in no way getting one. So not only is it hard for me to make this decision for my child, its even harder because he is a teenager and he feels as though he should be able to help make decisions for himself now. Over the last week I tried so hard to convince him this is for the best and it needs to be done. I cried so many tears over the last week. I decided on calling the pediatrician and speaking to him about other options. His office ended up contacting the rheumatologist. So by Wednesday morning the game plan was changing. I spoke to the rheumatologist and we decided that we would move his Remicade to be done at Tufts. They have highly skilled pediatric nurses who she assured me "were the best of the best". So if there was any hope of getting a vein they would find it. <br />
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After many phone calls between the rheumatologist, the insurance company and myself, Jacob was scheduled today to do his infusion at Tufts. I am so happy to say he was able to get the infusion and NO PORT. We had such a great experience at the hospital. The nurses were phenomenal. The took their time looking for the best veins and placed numbing cream on the areas. The let him sit for an hour before they attempted the IV. Then before they attempted his IV they brought over a machine that was held over his hand to be able to see the veins clearly. It was pretty cool to be able to see them like that. The with just one attempt the nurse got a great line in! Jacob did not even feel the stick at all. What a relief for both of us! They gave him some premeds before they started the Remicade and also took a ton of blood for blood work. Jacob had never been premed before the infusions. The benedryl knocked him right out. This made the day go by much faster for him. I have to say I do like the extra precaution to avoid an allergic reaction. So these past few extremely stressful weeks finally ended with good news. I am so very grateful for our very awesome pediatrician and rheumatologist. <br />
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<tr><td class="tr-caption" style="text-align: center;">finishing placing the IV </td></tr>
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Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com0tag:blogger.com,1999:blog-1087078031925814898.post-61034719296021198922013-03-20T09:47:00.000-04:002013-03-20T09:47:37.206-04:003rd Remicade infusion, eye check and rheumatology checkThis past week Jacob had his third infusion of Remicade. It started off very tough for him. They could not find a vein and it took multiple attempts to finally get one. To say this was heartbreaking is an understatement. Jacob was incredibly brave and sat still, patiently waiting, for them to find the vein. He was in obvious pain as they poked and poked and moved the needle around. Tears slowly ran down his face. I stood there helpless. So many thoughts ran through my mind watching my poor child go through this. No child should have to go through this to be able to see, be free of pain, and run around like the other kids. I am incredible grateful we have these meds, but it is so stinking hard watching him deal with all of this. Once the IV was finally in, he and I were very relieved. The rest of the infusion went well. <br />
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During the infusion Jacob has his eyes examined also. I am so happy to say his eyes are free of inflammation. He had been off drops for a week. His pressures were in the very high end of acceptable, but the pressure should improve now that he is off drops completely. <br />
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The next day was his 3 month appointment with his rheumatologist. Overall he feels much better and has only minimal stiffness in his knee. The doctor found some inflammation remaining in his toes, hips and knee still. She wasn't worried because he hasn't been on Remicade very long. We're going to give it some more time and see how the rest of the inflammation clears up. The important thing is he is pain free. <br />
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The next infusion will be in four weeks, and the rheumatologist said he is good until the summer. Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com4tag:blogger.com,1999:blog-1087078031925814898.post-12345271861517026152013-02-02T16:23:00.003-05:002013-02-02T16:23:59.018-05:00<br />
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February 1, 2013</div>
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Remicade begins. We had hoped that it would not come to this, but it has. </div>
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Jacob officially failed Humira, not only with his eyes, but also his joints too. </div>
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We will be going for these infusions every four weeks for at least the next</div>
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two years. We can only pray he goes into a medicated remission again. </div>
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Below is a picture of his knees yesterday morning. His left knee is very visably </div>
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swollen and has been very stiff and sore. He has been having difficulty getting moving after</div>
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he has been sitting or laying down for a while. Please pray the Remicade </div>
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does its magic and he doesn't need to have his knee injected and drained, and his eyes clear, and </div>
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he can get off these drops asap! He really doesn't want to be looking at cataract surgery. </div>
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<br />Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com0tag:blogger.com,1999:blog-1087078031925814898.post-7082965970638175882013-01-23T11:33:00.005-05:002013-01-23T11:33:56.573-05:00Time for a changeYesterday Jacob had an appointment with Dr. Foster, for the follow-up of his uveitis flare.<br />
His eyes did look better yesterday because of the steroid drops, but we knew this was going to happen. The drops put out the fire. The problem is he cannot stay on steroid drops forever. Most vision loss with uveitis is from the overuse of the drops. They should only be used temporarily until the systemic med can maintain the remission ALONE. I knew going in to the appointment that this was probably going to be it for Humira. He had trace cells prior to restarting the med, in October. He restarted the Humira in November and the flare has only progressed. Dr. Foster has advised us that, in his opinion, the best thing to do right now is to put him on Remicade and add back in Methotrexate. <br />
Jacob will start Remicade on February 1st. I'm hoping to start the Methotrexate this Friday.<br />
Infusions are a new road for us. Jacob is not very happy about to change the med. He would prefer to stay on Humira. Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com0tag:blogger.com,1999:blog-1087078031925814898.post-56968642841606514302013-01-20T07:11:00.001-05:002013-01-20T07:11:42.828-05:00Eye flareRecently Jacob has been complaining that his "cataract" is getting worse. He has been seeing halos around lights. He has also been complaining non-stop that his glasses are dirty, when they are not! I made an emergency appointment with our local eye doctor to have a quick look. I had a feeling that his uveitis may be flaring. Sure enough it was! Not just a few cells but many! A full blown flare. Not only does he have all the cells, but he also has something new for him. He has KP's present. I still do not know much about those except that it means the cells are sticking his lens to his corneas. The doctor called into our uveitis specialist and they wanted Jacob on dilating drops and steroid drops. Jacob is not liking being dilated. His vision is very blurry. So the big question here is why are his eyes flaring. He has been back on Humira for 2 months. I am wondering if it is not working anymore. He is still having stiffness in one of his knees. I just started him back on meloxicam also. I have heard that once certain biologics are stopped and restarted, they don't work because the body has developed antibodies to the drug. Jacob has an appointment this coming Tuesday with the uveitis specialist, we will see what the course of treatment will be!Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com0tag:blogger.com,1999:blog-1087078031925814898.post-2152598274001108662012-12-04T19:03:00.001-05:002012-12-04T19:03:04.680-05:00December 2012Finally got in to see the Rheumatologist since jacob's arthritis flared. He has had 2 injections of Humira since I last spoke with his doctor. His knee has improved quite a bit. There was only some fluid present. It is still stiff for him, but its getting better. He still has swelling in a couple toes. It concerns me because they do not bend at one of the joints. We also found out the details of the recent hip MRI. The arthritis is only mild in both hips, and It has changed some since the last MRI a year ago, but there is no bone damage. That was great news! The mri also showed the lymphnodes in the hip are inflamed as well. The doctor said that can happen with the synovitis. So the plan is we continue the Humira and return in 3mo. Jacob did have a bunch of labs drawn so hopefully they are okay. Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com2tag:blogger.com,1999:blog-1087078031925814898.post-81901447468289589122012-11-15T21:22:00.000-05:002012-11-15T21:22:01.861-05:00Remission is offically overJacob is restarting Humira tomorrow. He has been off of it since May of this year and his joints are starting to flare. Right now he has a stiff, swollen knee and a recent MRI shows that he has active arthritis in both of his hips as well. After speaking with the pediatric rheumatologist on call yesterday, we were told to start the Humira immediately. Last week he went for a recheck of his eyes too and he is still having trace cells. He had been off steroid eye drops for two weeks. It would of been okay to follow his eyes a little longer, but with the joints starting to swell there is no more waiting. So back on meds he goes. We see his rheumatologist in a few weeks, so we will see how things are looking then. Hopefully the knee swelling goes down and he won't need joint injections.<br />
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You can see the swelling in his left knee<br />
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Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com1tag:blogger.com,1999:blog-1087078031925814898.post-9648465857594572232012-09-27T22:25:00.002-04:002012-09-27T22:29:08.286-04:00Uveitis is backAfter a few years of having clear eyes, we found out yesterday that Jacob's eyes are flaring. Yesterday Jacob saw our local eye doctor for a quick check to order new glasses. Jacob had been complaining that he can't see far all of a sudden his glasses on. So I made the appointment to get a new RX and order new glasses. I was not at all expecting to hear that the doctor saw cells. He said that the right eye had 1+ cells, the left just a trace. Right after the appointment I called Dr. Foster's office and they had the doctor on call, call me right back. She advised me that we should get him into MERSI as soon as possible. They scheduled us for 7:45 AM today. After a 2 hour drive into Boston in the awful traffic, we saw Dr. Foster. He was concerned because when the tech took Jacob's vision it was very poor. He could barely read the big E with his right eye. Both eyes were significantly worse in vision. Dr. Foster asked the fellow to have him refracted (see if his vision could be corrected with another RX), dilated and a retina scan and possible angiography. Panic mode was setting in. Fortunately, after he was refracted they saw that his vision could be corrected and that the poor vision was more from the glasses needing an update than from disease. I don't understand though, because he was just there a month ago and his vision was fine. So how did it decrease that much in 4 weeks?<br />
After the dilation, Dr. Foster looked again and he could see that the inflammation had not spread to the back of his eyes. So the treatment plan is to go on the steroid eye drops for four weeks. Starting 4x a day for the fist week, 3x a day for the second week, and so on. Then return in 6 weeks for a recheck. We are hoping the drops will kick this and that's all he will need for now. We have not discussed restarting any systemic meds yet. We now need to pray that the drops are only for this short time because he cannot be on those for an extended period due to his cataracts. The drops will worsen the cataracts. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVVLRIiXDNxZHEgprgQ_TP-pNZXwu71eE_t49Te95Q1sMQ5dL7oqRecyiJiZhFOVm8E31OxPPrmdk53Z2PIP_r7xpryEKTB1bwGZTO-lO7g465NWQ4xbZmsr3gN6QcVvBa2sMyu0jlbL0r/s1600/sept27.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="148" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVVLRIiXDNxZHEgprgQ_TP-pNZXwu71eE_t49Te95Q1sMQ5dL7oqRecyiJiZhFOVm8E31OxPPrmdk53Z2PIP_r7xpryEKTB1bwGZTO-lO7g465NWQ4xbZmsr3gN6QcVvBa2sMyu0jlbL0r/s200/sept27.png" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVOVXaE5piPSJGulIrL2WcZvQTZ5IBcWQdEKA54QGKJ6vDhjY2nB4Bfe4fTn5JcETryE6TXYfXyof8o4CW-gBIiQZ78EpKDjbyH4OttLVYS9GsnDaz4zBgb4_DE_-KtK7vvdP-c6PBOKJ-/s1600/DSC01599.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVOVXaE5piPSJGulIrL2WcZvQTZ5IBcWQdEKA54QGKJ6vDhjY2nB4Bfe4fTn5JcETryE6TXYfXyof8o4CW-gBIiQZ78EpKDjbyH4OttLVYS9GsnDaz4zBgb4_DE_-KtK7vvdP-c6PBOKJ-/s1600/DSC01599.JPG" /></a>I just can't believe this is all starting again. It's been four years since he has had a uveitis flare. He has been off the Humira for four months and it's back. It is so disappointing. So do these kids ever get off meds? The pictures are Jacob at age 9 starting Humira and him yesterday.<br />
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<br />Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com4tag:blogger.com,1999:blog-1087078031925814898.post-15705296202057112622012-09-08T15:37:00.003-04:002012-09-08T15:37:41.970-04:00September 2012 Rheumatology recheckJacob has been off of Humira over 3 months now. Overall he is still doing very well. At his last visit he had a couple of swollen toes and was started on Meloxicam. His toes lookrd grest! There wasn't any swelling in them. The only other thing that was a concern this visit was his left hip, again. A month ago his hip seemed to be okay, now it is stiff again. Jacob does not have any pain in it though. Jacob has never really complained of pain anywhere. I honestly think he has a very high pain tolerance and unless it's something severe with him it doesn't register. The rheumatologist made it very clear that his hip isn't "normal" but she is unsure if it's active disease or if it's stiff because of past active disease. His last MRI, a year ago, had shown then that there was active arthritis in both hips. So the plan for now is that the doctor wants to give him another few months off of the heavy meds and repeat an MRI then. The MRI will determine whether or not he will need to start back on his medication. I discussed with the doctor that I was a little worried that if this is active disease, what is it doing to his hip right now. Hip arthritis scares me. She felt as though if we waited another three months that we wouldn't lose any ground without treatment. She wants him to continue this "holiday" off the meds. So by the time the MRI is done it will be 6 months off of medication. I am glad his body is getting a rest from these meds and hope all stays quiet!<br />
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Oh I almost forgot to add, Jacob had an eye appointment last week and his eyes are still clear. So no Humira for 3 months and NO RELAPSE!!! Wahooo!! We still need to see Dr. Foster every three months to be sure they stay clear. Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com0tag:blogger.com,1999:blog-1087078031925814898.post-15207321521977422922012-08-15T08:36:00.000-04:002012-08-15T08:36:14.911-04:00<div class="separator" style="clear: both; text-align: center;">
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I just wanted to share a before and after photo with you. These pictures of Jacob's toes were taken three weeks apart. The first one was prior to the Meloxicam, the second 3 weeks after starting the NSAID. I am amazed at the difference! He has now been off Humira for 3 months now. It has been nice to be able to give his body a break from it.Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com1tag:blogger.com,1999:blog-1087078031925814898.post-58854979841986821992012-07-28T10:17:00.002-04:002012-07-28T10:17:36.447-04:00July 2012 update<div class="separator" style="clear: both; text-align: center;">
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I know it has been a while since I updated the blog. Everything has been going well with Jacob. At the last rheumatology visit in April we decided that we would try to wean down on Jacob's Humira. He has been on Humira for 4 years now. (time flies!) The rheumatologist and I discussed weaning him down slowly. We went from giving the Humira every two weeks to every three weeks. Jacob seemed to be okay with that until about mid May, when he decided he was done with the med. He flat out refused to let me do the injection. I don't know if this is what many families go through when the kids hit the teen years. I emailed his rheumatologist and she said that we can give it a try stopping it. Jacob had the understanding that he may need to go back on this if his joints started to get inflamed again. We just saw the rheumatologist 2 weeks ago. Overall he is doing great! The only thing that showed was both of his second toes were swollen. They xrayed his feet to be sure that there was no bone damage happening. Thankfully there wasn't! The doctor gave Jacob 5 options. (I know he likes to have some control in deciding his treatment) She said we can watch the joints a little longer and see what happens, he can start Meloxicam (an NSAID), Start MTX, start Humira, or restart both Humira and MTX. Jacob chose "option 2". So he started on the Meloxicam. We are to return in another month to the rheum because she wants to watch him closely. I think the appointment is the first week of September. We also have an appointment the end of August for his eyes. I will be very nervous for this appointment because he will of been of the Humira for 3 months. This is the longest he has been off meds while he has had uveitis. This appointment is good timing if his eyes flare we know that he has no choice to go back on the meds. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbLrxbR0Uom2GJb5jCg9BiwzRry1VjV0Zbb5SgLVEC_hfA_32FHVdPzoZqmY4FPJIiS1WhWdFjI2-zvPw8jfuE-m0fx1_gt4VVyATJvqK5xXHiAnZ9qHTirLG0xjAQJQ4sC2KJbPmBB72c/s1600/toeess.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbLrxbR0Uom2GJb5jCg9BiwzRry1VjV0Zbb5SgLVEC_hfA_32FHVdPzoZqmY4FPJIiS1WhWdFjI2-zvPw8jfuE-m0fx1_gt4VVyATJvqK5xXHiAnZ9qHTirLG0xjAQJQ4sC2KJbPmBB72c/s320/toeess.png" width="320" /></a>You can see the swelling in the second toe</div>Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com0tag:blogger.com,1999:blog-1087078031925814898.post-12368612238313660852012-04-11T10:17:00.000-04:002012-04-11T10:17:04.371-04:00Rheumatology, Orthopedic and Nephrology appointments. April 9, 2012This past Monday Jacob had three appointments. Nephrology, Rheumatology and Orthopedic. What a long day that was! It was good I could coordinate seeing all three doctors because I only needed to miss the one day of work. Having a child with a chronic illness can be tough to manage being a working parent. It has been much easier now that things have been relatively quiet for him and we only need to go every few months or so. During eye or joints flares, that is another story! <br />
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We saw Nephrology first. Jacob has been having hematuria for some time now. He had a bout of this when he was five years old and it had stopped for a long time. It has been going on for quite a few months again. He started seeing the Nephrologist last summer. We still don't really have any answers. An ultrasound was negative. Jacob's dad and I were negative for the condition. (it can be familial) This time the doctor ran some extensive labs on his kidneys. I counted 21 tests on the lab slip. He is looking for an immunoglobulin disorder to Lupus and is rechecking the kidney function and ANA etc. If these blood tests come up negative then we will continue to follow the Hematuria and watch for any changes. The doctor has thrown around a possible biopsy, but decided at this point it isn't necessary. Thank God! Hopefully we get the blood work results soon! <br />
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The Rheumatology appointment went very well! There was no joint inflammation anywhere. I was a little nervous about this appointment. About a week ago Jacob had woken up and was having a lot of knee pain. He went off to school that morning limping. It went aways fast as it came. Apparently during the last few months Jacob has grown a lot. Last visit he had some leg length discrepancy and some size discrepancy in his calves. This has all evened out. <br />
There was some slight stiffness in his left hip but she could push past the stiffness. We decided to try to wean Jacob off of Humira. We are going to start slowly. Instead of giving it every 2 weeks we are going to go to 3 weeks. He has been on this for almost 4 years. I am nervous, but I feel as though we need to try! So I will need to watch closely for any trouble with his joints or his eyes. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrukAQWEOfZiHwAazQChNFhH048kA-tbGtFd1-9-_-TcCtvaU6fd1tVsuTWSJ3YrkbUmjCW889oBVrsnjakA5rRXKjbANTLNyqqONhVScHM1Z3IOBMDTlhhRRUGxw8eL-53dlG_0HcnXgW/s1600/photo.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrukAQWEOfZiHwAazQChNFhH048kA-tbGtFd1-9-_-TcCtvaU6fd1tVsuTWSJ3YrkbUmjCW889oBVrsnjakA5rRXKjbANTLNyqqONhVScHM1Z3IOBMDTlhhRRUGxw8eL-53dlG_0HcnXgW/s320/photo.JPG" width="239" /></a>The last appointment was with the orthopedic. Jacob had his usual xrays to check the curvature of his spine. His spine is curved at 16 degrees. This is still considered minimal. With puberty the scoliosis can worsen. So we are so glad that it is pretty stable. We won't need to return for another 6 months to the orthopedic.Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com2tag:blogger.com,1999:blog-1087078031925814898.post-24339415238808641652012-03-08T06:13:00.000-05:002012-03-08T06:14:02.982-05:00Awareness<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQNtr_vg_FsW-juy18xP64l1sQ6XtPhUxCZ6RsIrjwaP9-2VRwFfJa8KxeobE2pj-kCZg_TrAecqpS6FR6JfRNdtsD9ZsOqYYzjj3M7qRB47FOldfK6MVo__cpz7_jjzloRyX0OnYyfJk-/s1600/iaam.jpg"><img style="margin: 0px auto 10px; width: 320px; height: 247px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5717482885486160482" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQNtr_vg_FsW-juy18xP64l1sQ6XtPhUxCZ6RsIrjwaP9-2VRwFfJa8KxeobE2pj-kCZg_TrAecqpS6FR6JfRNdtsD9ZsOqYYzjj3M7qRB47FOldfK6MVo__cpz7_jjzloRyX0OnYyfJk-/s320/iaam.jpg" /></a><br /><div></div>Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com1tag:blogger.com,1999:blog-1087078031925814898.post-39640302920945711622012-02-03T12:31:00.002-05:002012-02-03T12:58:04.750-05:00eye update 2/1/2012<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr6dot_ewRlbC4Ttgtw_xaRwq2oH2CruCtUUH1uzDoeDgYxHt7jBbxc0_SmFR8yU6-qyQA9E2ZDIzsv6zIUTrxUM8DT4H2351SGt9Ts31IxjsJqOncm86l76qpAHjEaDzXdslsuHQZxehQ/s1600/cambridge.png"><img style="margin: 0px 10px 10px 0px; width: 239px; height: 320px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5704963344839253858" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr6dot_ewRlbC4Ttgtw_xaRwq2oH2CruCtUUH1uzDoeDgYxHt7jBbxc0_SmFR8yU6-qyQA9E2ZDIzsv6zIUTrxUM8DT4H2351SGt9Ts31IxjsJqOncm86l76qpAHjEaDzXdslsuHQZxehQ/s320/cambridge.png" /></a><br /><div>January 22, 2008 is when this uveitis journey began. Four years later it is still an unwavering worry. Uveitis is a disease that affects only about 11,500 children in the United States. Even though it is extremely rare, it is the third leading cause of blindness in the developed world. Children with this are at risk for blindness and complications from glaucoma and cataracts. In simple terms, uveitis is inflammation inside the eye. Left untreated it can damage vision rapidly. When Jacob was diagnosed with uveitis four years ago it was a complete shock. I had heard that because he has juvenile arthritis that he would be at risk. The uveitis was diagnosed four years after the diagnosis of juvenile arthritis was made. This been said, it is extremely important for children to be followed very closely, even years after the arthritis diagnosis. Uveitis can pop up very quickly and silently. Jacob had NO SYMPTOMS. </div><div>Since the diagnosis of uveitis we have been going to see Dr. Foster who is in Cambridge. If you are unfamiliar with Dr. Foster you can read up on him at <a href="www.uveitis.org">www.uveitis.org</a> . This site has a wealth of information. Jacob's eyes have remained clear of inflammation since about June of 2008. His uveitis has been controlled with Humira. Just this week we went for the visit and all continues to be well. Jacob's eyes are free of cells. He has not escaped this disease without damage though. He has small cataracts that formed as a result of the uveitis and steroid drops that were used to treat the inflammation. Jacob fortunately used the drops for a few short months. We are extremely lucky that he was treated aggressively and his vision has been preserved. He has started to notice that glare is a problem for him. He says that when he looks at lights he sees a jagged halo around them. This is caused from the cataracts. The cataracts are mild, in a sense, and do not need to be removed at this point. At this appointment I was curious to see when we could let our guard down considering he has been doing so well. Dr. Foster said that 7 years free of inflammation (which will be in 3 more years!) and we will talk about moving his appointments further apart. So for now we continue every 3-4 months in Cambridge. </div>Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com2tag:blogger.com,1999:blog-1087078031925814898.post-60755772233226997722012-01-05T17:58:00.002-05:002012-01-05T18:23:50.601-05:00Happy New year! Finally an update!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLCktF0WVFtjrwvNJEJNbdj_jqcpihsHScem0C3qzMY1laq7cbyyL7QWiBeNIyPqo8yFGqjlxnrbKIm33loaRsLPkuZqPLlSHofQCScJwMNcsM7ni9y9LmA78AbVZsYlwICETt1pRL2VR8/s1600/jan52012.png"><img style="margin: 0px auto 10px; width: 238px; height: 320px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5694286605278724226" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLCktF0WVFtjrwvNJEJNbdj_jqcpihsHScem0C3qzMY1laq7cbyyL7QWiBeNIyPqo8yFGqjlxnrbKIm33loaRsLPkuZqPLlSHofQCScJwMNcsM7ni9y9LmA78AbVZsYlwICETt1pRL2VR8/s320/jan52012.png" /></a> I figured with a New Year it would be a good time to give an update. Jacob just had a birthday last week. He is now 13! A teenager! I can't believe how quickly he is growing up. He is getting so tall too! I am happy to say his arthritis has been doing well. He hasn't complained much at all in the last few months. I think maybe it was around Halloween he had some ankle pain, but that was short lived. Today he had his 3 month follow-up with his rheumatologist. The doctor we see we really love! She is so kind and I just love how she interacts with Jake. She understands his personality well and knows exactly how to talk to him. This is huge for us. Overall she said she is giving Jacob an A today. His joints are doing great. The only issue, which has been an issue for quite some time is his left hip. It is significantly tighter than the other side. Jacob has zero pain from this even when the hip is manipulated. She said it will only be a concern if it does start to cause him pain. The only other findings were his left knee and leg are overgrown from the active arthritis in the past. It is still not corrected itself. I thought the leg lengths were a little more off than the last visit. His left calf muscle is about 1 1/2 inches smaller than his right. The other issue that we have been following is his scoliosis. The rheum felt as though it has worsened. He has grown almost 3 inches in the last 3 months so with this growth spurt it is possible. Jacob will see the orthopedic in April and he may get a shoe lift at that point. He is also being followed by a nephrologist for another issue that seems to not be going away.<br />I do think the appointment went relatively well. I had a talk with the doctor today about how Jacob has had arthritis for 8 years now. When she was pointing out the issues to me today she mentioned how he has had arthritis for a long time. To hear that out loud I have to admit kind of startled me. You know to look at your 13 year old child and accept he has these "issues" from having arthritis "for so long" it kind of hits hard. He has many more years to live and if he has permanent issues already, what will the future bring? We continue to pray that a cure will be found.<br /><div></div>Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com0tag:blogger.com,1999:blog-1087078031925814898.post-56952700092979592812011-07-22T21:10:00.003-04:002011-07-22T21:25:27.684-04:00Hip MRI results<div>Jacob's pediatric rheumatologist emailed me today to let me know that</div><div>Arthritis is in BOTH of Jacob's hips. The right is worse than the left. </div><div> </div><div>This MRI was ordered a few weeks ago because when he had his 3 month visit with the rheum</div><div>she could feel there was stiffness in his hips. Three months prior to this she had noticed the same.</div><div>She said it was time to do an MRI to see what is going on in there.</div><div> </div><div>Jacob in not having any pain what-so -ever with his hips. That is a good thing!! He is having</div><div>continuous pain in his heels though. After emailing the rheum back and forth, she decided</div><div>to have him do Humira weekly. I asked her if adding back in MTX would be an option, but she</div><div>wants to give the Humira weekly for now. If he continues to have pain and troubles we will </div><div>have no other option than to go with the MTX again. </div><div> </div><div>Jacob is not happy about the shot being weekly. He has not been doing well with the 40 mg dosage. It is extremely painful for him now.</div><div> </div><div>I am trying to make sense off this all. I don't know why I feel so surprised when something pops up again and again. Each time things seem to get quiet it's like you let your guard down then BAM! It's back. Now with this hip involvement I feel more fear for his future. This disease isn't going anywhere. We are 7 years in and there is no end in sight. A lot of emotions are running through my head tonight. After a good nights rest, I will be ready to fight again. </div><div> </div><div>Please pray for all the kids dealing with this disease. As Jacob said tonight "I am sick of this stupid arthritis".</div>Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com6tag:blogger.com,1999:blog-1087078031925814898.post-26624602834760117042011-07-16T18:32:00.003-04:002011-07-16T18:46:44.578-04:00New update<div>Since I last posted Jacob has had a rheumatology appointment and an eye appointment.</div><div> </div><div>The eye appointment was just this past week. I am very happy to report his eyes are still clear.</div><div>They have been clear for 3 years now! (he has a few trace cells once in the past year)</div><div>His pressure was great and there was no change in his cataracts! We do not have to return for 3 months! This is the longest we have gone between visits since his uveitis diagnosis 3 1/2 years ago. </div><div> </div><div>Jacob went to the rheumatologist a couple of weeks ago. He has been still having tons of heel pain. I told the doctor that I have noticed he has changed the way he walks because of the heel pain. His thigh on the side of the heel trouble is smaller than the other side. This is happening because he has changed the way he walks! So obviously it has been bothering him more than he has let on. While we were at the JA conference both of his heels were bothering him a lot. He had such a difficult time walking around seeing the sights. I was able to get him a wheelchair while we were in the Museum. He continues to have the pain pretty bad right now. He is back on Naprosyn 500mg twice a day. </div><div> </div><div> The rheumatologist also found that he is getting stiffness in his left hip still. This was noticed a few months ago and she decided it is time to have an MRI to see what's going on in there. That is scheduled next week.</div>Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com2tag:blogger.com,1999:blog-1087078031925814898.post-90357831915687172192011-07-16T18:15:00.007-04:002011-07-16T18:47:13.514-04:00JA Conference 2011<div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYKmchLKhIWfUzEaz9iWy-83EibbqgGGMEnhoXMfvg3S4zebWwlnkjHKySO4Rw5qK_8FaNG2TVcWYsq1yPdHx8yFUW_E6gAIWgx8Xv37sYMIBj71xLLLG-o5K-s4GyMoBVBxB7RkaiD6wd/s1600/summer+2011+and+DC+083.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="margin: 0px 10px 10px 0px; width: 239px; height: 320px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5630081473118520610" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYKmchLKhIWfUzEaz9iWy-83EibbqgGGMEnhoXMfvg3S4zebWwlnkjHKySO4Rw5qK_8FaNG2TVcWYsq1yPdHx8yFUW_E6gAIWgx8Xv37sYMIBj71xLLLG-o5K-s4GyMoBVBxB7RkaiD6wd/s320/summer+2011+and+DC+083.JPG" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpbROl6xV7FRgGo-t26Ry9kgHTdbArcQxqmjyikCv6gLNL51ERomwYaczZwhToUfs3yivGUCAboqWsTrc3gu4v2BcoOinCA1lRjupWNyPp8vyG_8E5igoWbtvFgtLFE0qC8Rp6kn_-SIrb/s1600/summer+2011+and+DC+134.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="margin: 0px 10px 10px 0px; width: 320px; height: 239px; float: left; cursor: pointer;" id="BLOGGER_PHOTO_ID_5630081303670717474" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpbROl6xV7FRgGo-t26Ry9kgHTdbArcQxqmjyikCv6gLNL51ERomwYaczZwhToUfs3yivGUCAboqWsTrc3gu4v2BcoOinCA1lRjupWNyPp8vyG_8E5igoWbtvFgtLFE0qC8Rp6kn_-SIrb/s320/summer+2011+and+DC+134.JPG" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVoW8vAOVdAjqgggfQLIih29n4hY6T46e78SEBOcRKgfyvOydhuBOBxfH9oRqkJ-KQsd3obMOlgBSgrCIF2lOUhz6zV8B7nIoaFTWXolDSEqBPlO6U7TZ7KDvswFOhmmAhbM_6t7zI0CH3/s1600/summer+2011+and+DC+119.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="margin: 0px auto 10px; width: 320px; height: 239px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5630080844511619410" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVoW8vAOVdAjqgggfQLIih29n4hY6T46e78SEBOcRKgfyvOydhuBOBxfH9oRqkJ-KQsd3obMOlgBSgrCIF2lOUhz6zV8B7nIoaFTWXolDSEqBPlO6U7TZ7KDvswFOhmmAhbM_6t7zI0CH3/s320/summer+2011+and+DC+119.JPG" /></a><br /><div><div>Last week we attended the Juvenile Arthritis Conference in DC. We had such an amazing time!<div><div><div><div>Even though Jacob has had JA for the past 8 years, this was the first conference we were able to attend! What an awesome experience for my whole family. I was able to meet up with so many of the moms that I have been talking to online for the past few years! To meet them in person after all this time was wonderful! I can't even explain the bond we had with each other. We had never met before, but yet felt like we have known each other forever! To be with others who are going through the same experience was so great! To see our kids play together was priceless! I am hoping to be able to make this a year long tradition. Next year the conference is in Indianapolis. <img style="margin: 0px auto 10px; width: 320px; height: 239px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5630080029977694258" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwo28LCClIhkbLlZzuRwmJVFWbz4d01yUPrU9XdoTCtUnUQDa4nAz9uDaKyyBgJSr6xeN2aWm3PctTVMFjP-cr7CN4IbHzWbI2DgUi_bjCEs2UhxrbwNS0Kf06f8fHfW0uKuSblYXKyxVu/s320/summer+2011+and+DC+286.JPG" /></div></div></div></div></div></div></div></div></div>Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com0tag:blogger.com,1999:blog-1087078031925814898.post-90119894454886979552011-06-15T11:21:00.004-04:002011-06-15T11:41:31.451-04:00Conference time!!<div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpqs5aGmAky8pDh46-0V_KFuT9rZhCYcpRtU06dpguIzxR3T9H0-IR7Q4Ol4v7GWptP-JdE6s0qaQEDHYUtp4oYvIteT9jSWqcw0LknXfchI-Tb-gvLYJvZ6TAu2Lzpj7QwebgUnQhb-IP/s1600/jraconference.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="margin: 0px auto 10px; width: 200px; height: 259px; text-align: center; display: block; cursor: pointer;" id="BLOGGER_PHOTO_ID_5618467291872705426" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpqs5aGmAky8pDh46-0V_KFuT9rZhCYcpRtU06dpguIzxR3T9H0-IR7Q4Ol4v7GWptP-JdE6s0qaQEDHYUtp4oYvIteT9jSWqcw0LknXfchI-Tb-gvLYJvZ6TAu2Lzpj7QwebgUnQhb-IP/s320/jraconference.jpg" /></a>The Juvenile Arthritis conference is coming in a few weeks!! We are beyond excited to go! </div><div>We learned yesterday that we will be receiving a generous scholarship from our local Arthritis Foundation! This makes our trip so much more manageable. The boys are very excited about going. I am so very grateful for the opportunity to learn more about my son's condition. Jacob has been battling JIA since the age of 5. This will be our first conference. We are planning to meet up with a few other families that we have met online through this journey. It is going to be great to be able to put a face to those moms that I have spoken to online for so long. </div><div> </div><div>My boys and I have not taken a vacation for some time. We are taking advantage of the destination to be able to tour our capital. We planned on a couple of days around the conference to sight see. I am looking forward to showing the boys part of our nations history. The White House, the monuments, the Vietnam wall, Arlington Cemetery are a few of the places I would like to see! </div><div> </div><div>Thank you again to the Arthritis Foundation for this awesome opportunity!<br /></div><div></div>Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com4tag:blogger.com,1999:blog-1087078031925814898.post-9517946198857575202011-05-11T13:32:00.004-04:002011-05-11T15:56:27.674-04:00Eye appointment<div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQWlGGisLEeCX9slPG5lVzupfJdG7eJxsbP704YXIh-MDEF8JPwLXh1tt8ZzGN2T7qAjgYoHDn_ca-KHPbFRb94VC4GiZdt_GxsQdA7PPUUHczDyWBEjGbzlCOF383hMHmDxFZa19vwcs6/s1600/IMAG0552.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="margin: 0px 0px 10px 10px; width: 214px; height: 320px; float: right; cursor: pointer;" id="BLOGGER_PHOTO_ID_5605515898258779074" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQWlGGisLEeCX9slPG5lVzupfJdG7eJxsbP704YXIh-MDEF8JPwLXh1tt8ZzGN2T7qAjgYoHDn_ca-KHPbFRb94VC4GiZdt_GxsQdA7PPUUHczDyWBEjGbzlCOF383hMHmDxFZa19vwcs6/s320/IMAG0552.jpg" /></a><br /><div>Overall the eye appointment went well. There were no cells present. </div><div>There was a little panic though when they were saying that there was </div><div>a change in his vision. When the tech checked his vision in the beginning of </div><div>the appointment, she came up with 20/40. His vision corrected is usually 20/25.</div><div>She said that his cataract has grown some in his left eye. It was graded at a trace initially and it is</div><div>now at 1+ to 2+in his left eye. His right eye is just a trace. </div><div> </div><div>When the doctor came in he wanted to know the last time his eyes were refracted and what his vision was. They called over to our local doctor and got his prescription and vision corrected. </div><div> </div><div>Then we went back into the exam room and Jacob was retested with their lens and then with his glasses. He read at 20/25 again. The screen in the first room was a mirror where he had to read. The second room was a computer. The tech said the glare could of affected him in the first room. </div><div> </div><div>I was stressing that the vision change was from the increasing cataract and that he would need to have something done. I was very glad when it turned out to be okay!!</div><div>Jacob seemed to be a little nervous when they were trying to figure out why. </div><div> </div><div>The only other thing today is that his pressure was up a little again in his left eye. He was at 21. The right eye was at 13. </div><div> </div><div>We also just got the refill on the Humira. The rheumatologist upped his dose from 20mg every other week to 40mg to keep up with his growth. He has been having some breakthough joint issues so hopefully this will stop that. </div><div> </div><div> </div></div>Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com4tag:blogger.com,1999:blog-1087078031925814898.post-34081938661972144472011-04-10T14:12:00.006-04:002011-04-10T14:41:44.216-04:00Heel Pain<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhiZy5bJB3CSVTyL4CBVHVKKzfTYHSOtNNdNaW0jqNCESsuW6kcVM8mem_RibYkdg4Xka5VCMVx9UQr3ObjbU7yibn4U8XBGsqdNOxWI0DHeYCH62s0B2LKdKQK992pWnG0q6m5_vdY_Bf/s1600/d.bmp"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 320px; FLOAT: left; HEIGHT: 214px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5594026103681826386" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhiZy5bJB3CSVTyL4CBVHVKKzfTYHSOtNNdNaW0jqNCESsuW6kcVM8mem_RibYkdg4Xka5VCMVx9UQr3ObjbU7yibn4U8XBGsqdNOxWI0DHeYCH62s0B2LKdKQK992pWnG0q6m5_vdY_Bf/s320/d.bmp" /></a> <br /><div><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 214px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5594024070706988082" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggP75p3FMcN7W7JsARMXi7rOfXLsMZb8Xu4ikF3tJMpJU-NCbOPfz-Vrehyphenhyphen4NfbfJG5NZqoswFhVkJjL-lNlJSpsTvcCQbrLJLgl7agjt10WDnWUACGa3xdHsqV615wwmFwbUeC4MO-TuV/s320/f.bmp" /><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 320px; DISPLAY: block; HEIGHT: 214px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5594025700085509234" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjHMRTj_MOdky2muB4X6jCEl978b6XKySNsbNm4FlKADwyb6zYmN6FLrnb4kSsyjgV4QYtlhPlxjfq2bJH4MZqcMIiMcIH55RmJMBC2liLcRb7xOHBWqxgjWDNU1wDhS3Lv4t528qKTauQ/s320/b.bmp" /> <br /><div><br /><div>Jacob has been having heel pain for the last month or so.(maybe longer I lost track of time!) We went in to see the rheumatologist a couple of weeks ago for it. When we went in to see her, his heel pain was on a good day. I had went out and bought him some new sneakers hoping that they would help the pain. He told the doctor that it felt much better. She didn't see any problems. We left with a prescription for Naprosyn to take as needed. For the past 2 weeks he doesn't seem to be getting any better. He actually woke yesterday hardly able to walk. I hadn't filled the NSAID yet, so I went and got it for him. He woke again today, came down the stairs very stiff and hurting. It is a beautiful day out today so I took the boys out for a walk at a State Park. I knew Jacob would probably have trouble but we went anyway. I was right. He was limping and in pain. The other boys wanted to go for a longer walk but Jacob just wanted to leave. He pushed through for a little while, then we turned around and left. I don't know what is going on. I am going to try the NSAID regularly and hope that it takes care of the pain/inflammation. The rheumatologist told me if this continues, you have the option of doing the Humira weekly, instead of every 2 weeks. We might be headed that way. It doesn't make any sense that he can't even walk any distance at all without being in pain. </div></div></div>Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com0tag:blogger.com,1999:blog-1087078031925814898.post-36256610176958326322011-03-30T18:37:00.002-04:002011-03-30T18:42:06.405-04:00Awareness Video<a href="http://www.youtube.com/watch?v=98i1bgueDkE">http://www.youtube.com/watch?v=98i1bgueDkE</a> <br /><br />Jacob's Journey on Video<br />To hear the song, you have to scroll down and pause the song on here.Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com0tag:blogger.com,1999:blog-1087078031925814898.post-89272380346568722652011-03-09T13:04:00.003-05:002011-03-09T13:15:02.495-05:00Uveitis: STAY AWAY AND DONT COME BACK AGAIN<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS7B5NO4VmtAKVv6WkFNo_WJi8pb_b13PXXbm1lOS85A4S9AcQnbZadNZg4DsZzGrA6xWWNH_OL8wcQ-06fE4cFkDuCoNJZppZuyvbMgESlvDaieecFInkJ5kAB8mvbv1HbFcZwBnx3Uf2/s1600/foster.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 214px; DISPLAY: block; HEIGHT: 320px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5582143311683008738" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS7B5NO4VmtAKVv6WkFNo_WJi8pb_b13PXXbm1lOS85A4S9AcQnbZadNZg4DsZzGrA6xWWNH_OL8wcQ-06fE4cFkDuCoNJZppZuyvbMgESlvDaieecFInkJ5kAB8mvbv1HbFcZwBnx3Uf2/s320/foster.jpg" /></a> Jacob had his 2 month eye check today. His eyes remain clear!! All looked great today. Pressures were great also. I think he has been off drops now for 3 YEARS!! The Humira is<br />working well. He is still completely off methotrexate. Jacob did complain of his knee hurting when he got home from school yesterday. When I just asked him how he is feeling this afternoon he said he is fine and "resting his knee". He insists it is fine, but he wants to rest it. hmm When he does complain of pain, I know it must be bad. I think he has a very high pain tolerence. I suppose it's a good thing, it doesn't slow him down often.<br /><br />The pic is of Jacob and his younger brother, who wanted to come along today. After the ride in traffic to Boston today he said he will go to school next time. haha<br /><br />Praying all of our kids are feeling well today!Jacob's Momhttp://www.blogger.com/profile/03213952271502782990noreply@blogger.com0