Every day I have people ask me how my children are doing. I truly appreciate this. It can help me loosen up a little bit, just knowing that someone cares enough to ask! However, here's the catch: I never really know day to day. Emily is the hardest to tell. She'll complain for a week about a cold sore, but she won't complain about the fact that she can't walk. That was exactly the case in October 2010 when she was officially diagnosed with JDM. She'll complain about a scrape, but not because her head hurts from having her sinuses scraped. She tends to complain more when there is much less pain. The worse she feels, the less she says. When you ask her how she is feeling, the automatic response is "Good". Sometimes we can pick up cues. Other times we truly are left to guess.
Zach is more vocal right now. He's much more quick to tell you when something is wrong. BUT, the worst parts of the disease are what you can't see, so how can I really know for sure?
I have also had several people lately ask me if this could be because of environmental factors, diet, etc. I will try to make this easy to understand, but it's difficult subject matter, and the scientists aren't 100% sure yet. Say you have an electrical circuit that is working fine. Everything is working as intended. Suddenly, something happens- a trigger is pulled, a lever or switch. That opens the circuit up, right? Until that circuit is closed, it won't be right, it will cause problems. The immune system is the same way. Here's the problem- the "switch" in this case is invisible. It leaves no trace. And you may not even know that the circuit is open for many years. Some people have symptoms many, many years before the disease hits. Once it hits however... Some people are lucky enough to be well managed with just one or two treatments. Others never seem to be able to find anything that helps. For a small percentage a significant diet change will help and heal them forever. Most people find no relief through diet change. And, if it's an environmental trigger, removing the trigger doesn't help. We had mold in our wall that went undetected until 3 out of 5 of us got very sick. We had NO clue that we had mold. It was hiding up in the rafters of the attic above our kitchen and bathroom. It was removed, and I know it's gone (because I am extremely sensitive to mold). That doesn't seem to matter. Other triggers are bacteria like strep. Strep and pneumonia can set off autoimmune diseases like RA. Again, once that trigger is pulled there is no going back.
When I tell people about my kids' situations they often ask me "Are you sure you don't have mold in the house?" Yes, but even if we did it wouldn't change this either way at this point. Oh, it may speed it up if we still had mold, but it won't magically reverse.
My kids "good" is different from other people's. If I don't know how to answer you, please don't think it's anything more than just "I don't know". As lame as it may sound, we just don't know. Some days bring severe fatigue. Some days bring severe pain. Other days bring stiffness, and still others bring all of the above. For my kids, most of the time their pain is lessened. Em does pretty darn well. I think it's actually more because she has gotten used to the pain. Also, remember that a simple cold can become a huge ordeal because their immune systems are suppressed. This means that, while you & I can fight off a cold or have a simple round of antibiotics "cure" us, this often isn't the case with immune suppressed people. They fight and fight but it doesn't always work without a LOT of intervention. This is our life. We make the best out of it.
Showing posts with label JRA. Show all posts
Showing posts with label JRA. Show all posts
Friday, February 24, 2012
Sunday, August 28, 2011
Port Consult
On Thursday Emily & I went for her port consultation. I suspected that we would make the 2+ hour drive only to have a 15 minute appointment. I was right. It's a nice drive, but it is long!!! On the way up I told her to think about any questions that she may have. I explained that, since it's her body and her appointment, she needed to speak up whenever she had something to say. I purposely held back :) She did very well!!! They first asked why she wanted the surgery. She explained that her veins roll, it takes a lot of pokes, and she's tired of being anxious. So, we have a date! September 27th. I'm not 100% sure of the details yet. I know that sometimes insurance won't cover a med if it's a day early, and she'll technically not be due for her infusion until the 28th. The said that if insurance won't cover it a day early, they can admit her overnight and do her infusion the next day. If all goes well, the weekend right after that we should be going on a family weekend camp out. I'm keeping my fingers crossed on that one. I realize that everything is up in the air with my mom and her treatments. She hasn't had her appointments with her oncologist yet, so it may be that I am needed to help my dad, but we'll see. That's a whole other blog ;)
Otherwise, things are reasonably great with her. She's been taking the stairs more often than not at school! She really credits the Rituxan. She says that she can feel it working almost immediately. Maybe it's psychosymatic, but who am I to tell her otherwise? I'm just so happy that she's finally feeling some energy. I'm happy that school is back in session. It gets her moving more often than what we've been able to do for her. We had her 2nd loading dose of Rituxan last week (I think). We've been at the hospital almost every week. At this point, I forget what we've done when. She shouldn't need another dose for another 3 months! That said, after this Wednesday's infusion, we should have a 4 week break!!! Oh, I so need that! I'm quite sure that she does, too. I'm so grateful that we had such a great summer to make up for all of the torture that she's had. Not that it's easy to watch; it's horrible!!! But at least there's an end in sight. We have a doctor's appointment for her on Wednesday when we're there for her infusion. I hope to update more then.
Oh, and one last note. My son, who has psoriasis. He has been fighting it since 2008, just after Emily was diagnosed with JA. Now his jaw is clicking. It is likely TMJ. I plan on asking our pediatric rheumy about it on Wednesday, too. One of my biggest fears is that his psoriasis will turn into psoriatic arthritis. I'm hopeful that this is just TMJ!!!
Otherwise, things are reasonably great with her. She's been taking the stairs more often than not at school! She really credits the Rituxan. She says that she can feel it working almost immediately. Maybe it's psychosymatic, but who am I to tell her otherwise? I'm just so happy that she's finally feeling some energy. I'm happy that school is back in session. It gets her moving more often than what we've been able to do for her. We had her 2nd loading dose of Rituxan last week (I think). We've been at the hospital almost every week. At this point, I forget what we've done when. She shouldn't need another dose for another 3 months! That said, after this Wednesday's infusion, we should have a 4 week break!!! Oh, I so need that! I'm quite sure that she does, too. I'm so grateful that we had such a great summer to make up for all of the torture that she's had. Not that it's easy to watch; it's horrible!!! But at least there's an end in sight. We have a doctor's appointment for her on Wednesday when we're there for her infusion. I hope to update more then.
Oh, and one last note. My son, who has psoriasis. He has been fighting it since 2008, just after Emily was diagnosed with JA. Now his jaw is clicking. It is likely TMJ. I plan on asking our pediatric rheumy about it on Wednesday, too. One of my biggest fears is that his psoriasis will turn into psoriatic arthritis. I'm hopeful that this is just TMJ!!!
Friday, July 29, 2011
More changes possible
I've been trying to write about this for a few days. Since I kept getting an error on Facebook saying my account was down due to a site error, I waited until I could log into Facebook again. Like a true addict jonsing for a fix, I think I checked my Facebook every 5 minutes for the majority of the 24 hours it was down.
Anyway, Tuesday was our first infusion day for Emily's new medicine, Rituxan. Apparently, the first 2 doses are double doses, then in about 4-6 months a smaller booster dose is administered. I guess someone forgot to tell the scheduling desk this; they scheduled us a 6 hour slot for an 8 hour dosage. Oops! I realize that our scheduling desk has been suffering from "growing pains" due to a staff change. I have learned when staff changes to expect things like this to happen. I can't say I wasn't surprised, but it takes a lot more than that to upset us. I was also pleasantly surprised to find that we had been put on the doctor's schedule. I knew that we were scheduled for next week, but apparently they added us in because I had called to let them know that we have weird things going on.
I have been trying to figure out what the heck is going on with Emily's little body for months now. On the high doses of Prednisone she was doing very well, except for getting sick more often than usual. At first, I just assumed it was because she's on 3 immune suppressors. (Now 4 since we've added Rituxan). However, the more we've gone down on her Prednisone, the more changes we notice. Aside from getting sick more often, specifically her asthma flaring, she started getting fevers the week before her Remicade was due. I thought this was just because she was sick, but Kevin pointed out last month that she's probably been flaring. I don't actually remember her complaining about her joints before, but the past 3 months she has. (Thankfully her muscles have been quiet & under control.) So, now what we have is a child who is on daily asthma controls, who is at high risk for pulminary hypertension and other systemic disease effects (since both MCTD & Dermatomyositis are systemic diseases), who is getting ill and flaring the week before her meds are due. This past month her Remicade did NOTHING for her knee, and about 2 weeks in, her hip socket was causing more pain. The hip only lasted about 2 days, but her knee pain didn't stop until we increased her Prednisone from 4.5mgs to 15mgs. I don't like that, not at all. But she was in enough pain to agree with it, and her asthma was acting up so it helped both. This got me thinking. How often was she sick because her Remicade was wearing off? How much has the Prednisone masked what the Remicade has done? And my answers were ones that I didn't particularly like.
I'm not one to panic anymore. Yes, at the start of all of this I did a LOT of worrying. We had a lot of diagnosis ruled in, then back out. I realize that with autoimmune & rheumatic diseases, you just don't know until there is concrete proof. Many things are not what they appear. However, one night out of the blue it occurred to me: What if the Remicade isn't working as well because Remicade isn't meant for systemic patients? What if this "asthma" isn't asthma, but possibly the start of systemic features? Despite not wanting to make it real by putting it out there, I forced myself to ask the nurse practitioner if that could be. She had already arranged for a repeat pulminary function test at my request. She explained that's why she agreed to the test, why they wanted to try the Rituxan, and why they increased the Prednisone. We also increased her Symbicort strength from 80/4.5 to 160/4.5. I think I'd feel more comfortable leaving her on the higher dose at this point, but we'll find out more next week. She said the PFT can usually distinguish between asthma and other pulminary restrictions. Good to know. Depending on what the PFT shows, we may repeat her chest xray. We haven't had one done since October. By this point, it was already an hour into our time there and we still hadn't gotten into the infusion room. I still had no idea how long the infusion time was for this med.
As soon as the nurse started looking to find a vein Emily got very upset. Em knows that if she can't feel it, then the nurse can't either. I prayed and prayed for one poke. Nope. Poke number 1 produced this:
Needless to say, by this point Emily was really freaking out. She was sobbing, yelling at us, seriously freaking out. I can understand how she feels. No one wants to go through all that she has to. It really isn't fair at all. However, by this time we're at a point where they have to hurry & find a vein or it will be too late to do the infusion. Great. We had a lovely conversation with a little girl across the way about her port. Well, I had the conversation. Emily sat there angry at me for talking about it. I spent almost the whole time there talking to various people about the port. I saw the doctor 3 times, the nurse practitioner 4 times, the Child Life specialist came to sit with us and bring us a book to take home about ports. All of the regular nurses took turns talking about it. One in particular teamed up with the nurse practitioner. I ordered the referral to the pediatric surgeon during this conversation. And later on, after the doctors and infusion room nurses went home and we went to an inpatient room for a few hours, our night nurse & I talked about it. I think she's now heard enough to be ready. She's certainly considering it. She's told me 3-4 times now that she thinks it may be a good idea. We're both tired of the stress and trauma associated with blown veins. Before we left, the other nurse practitioner came in. She was actually downstairs with her son at the orthodontist but she got sucked in to help us get Emily's Methotrexate dose there instead of me giving it that night at home. (This is the nurse that many other people don't like, but she's always been really cool with me. We even joked around a bit.) While I had her there, I asked her the one question that I had forgotten to ask. Many of the JA kids are systemic, which used to be called Still's Disease. Still's classic symptoms are at least one fever spike daily and a specific type of rash. I didn't think that Emily would ever have any of those symptoms with her MCTD, but I wanted to ask to be sure. I'm happy to say that I don't need to try to remember to monitor her temp constantly. She shouldn't have any rashes like Still's, either. The practitioner that came in for the MTX orders also called the house the next day to make sure that we made it home safely. How sweet is that?!?!?!
Em didn't sleep well that night after we finally got home around 12:30 A.M. However, she slept in the car and in the hospital. The next day she slept a lot, and today she's had a lot of rest. Hopefully this med will help her to have more energy, to feel better. We won't know for quite some time if it works, but we're certainly hopeful. Next week we go for her Remicade & PFT. We were given the choice to go back the week after or skip a week. We will skip a week and go back for her next Rituxan after that. Depending on how her immune system looks, she may also be given IViG to boost her system. Hopefully we'll know more about what's happening on Wednesday.
Anyway, Tuesday was our first infusion day for Emily's new medicine, Rituxan. Apparently, the first 2 doses are double doses, then in about 4-6 months a smaller booster dose is administered. I guess someone forgot to tell the scheduling desk this; they scheduled us a 6 hour slot for an 8 hour dosage. Oops! I realize that our scheduling desk has been suffering from "growing pains" due to a staff change. I have learned when staff changes to expect things like this to happen. I can't say I wasn't surprised, but it takes a lot more than that to upset us. I was also pleasantly surprised to find that we had been put on the doctor's schedule. I knew that we were scheduled for next week, but apparently they added us in because I had called to let them know that we have weird things going on.
I have been trying to figure out what the heck is going on with Emily's little body for months now. On the high doses of Prednisone she was doing very well, except for getting sick more often than usual. At first, I just assumed it was because she's on 3 immune suppressors. (Now 4 since we've added Rituxan). However, the more we've gone down on her Prednisone, the more changes we notice. Aside from getting sick more often, specifically her asthma flaring, she started getting fevers the week before her Remicade was due. I thought this was just because she was sick, but Kevin pointed out last month that she's probably been flaring. I don't actually remember her complaining about her joints before, but the past 3 months she has. (Thankfully her muscles have been quiet & under control.) So, now what we have is a child who is on daily asthma controls, who is at high risk for pulminary hypertension and other systemic disease effects (since both MCTD & Dermatomyositis are systemic diseases), who is getting ill and flaring the week before her meds are due. This past month her Remicade did NOTHING for her knee, and about 2 weeks in, her hip socket was causing more pain. The hip only lasted about 2 days, but her knee pain didn't stop until we increased her Prednisone from 4.5mgs to 15mgs. I don't like that, not at all. But she was in enough pain to agree with it, and her asthma was acting up so it helped both. This got me thinking. How often was she sick because her Remicade was wearing off? How much has the Prednisone masked what the Remicade has done? And my answers were ones that I didn't particularly like.
I'm not one to panic anymore. Yes, at the start of all of this I did a LOT of worrying. We had a lot of diagnosis ruled in, then back out. I realize that with autoimmune & rheumatic diseases, you just don't know until there is concrete proof. Many things are not what they appear. However, one night out of the blue it occurred to me: What if the Remicade isn't working as well because Remicade isn't meant for systemic patients? What if this "asthma" isn't asthma, but possibly the start of systemic features? Despite not wanting to make it real by putting it out there, I forced myself to ask the nurse practitioner if that could be. She had already arranged for a repeat pulminary function test at my request. She explained that's why she agreed to the test, why they wanted to try the Rituxan, and why they increased the Prednisone. We also increased her Symbicort strength from 80/4.5 to 160/4.5. I think I'd feel more comfortable leaving her on the higher dose at this point, but we'll find out more next week. She said the PFT can usually distinguish between asthma and other pulminary restrictions. Good to know. Depending on what the PFT shows, we may repeat her chest xray. We haven't had one done since October. By this point, it was already an hour into our time there and we still hadn't gotten into the infusion room. I still had no idea how long the infusion time was for this med.
As soon as the nurse started looking to find a vein Emily got very upset. Em knows that if she can't feel it, then the nurse can't either. I prayed and prayed for one poke. Nope. Poke number 1 produced this:
Em didn't sleep well that night after we finally got home around 12:30 A.M. However, she slept in the car and in the hospital. The next day she slept a lot, and today she's had a lot of rest. Hopefully this med will help her to have more energy, to feel better. We won't know for quite some time if it works, but we're certainly hopeful. Next week we go for her Remicade & PFT. We were given the choice to go back the week after or skip a week. We will skip a week and go back for her next Rituxan after that. Depending on how her immune system looks, she may also be given IViG to boost her system. Hopefully we'll know more about what's happening on Wednesday.
Friday, July 22, 2011
The JA Conference! (Long)
I know that I touched on this a bit in my last post, but I wasn't able to give it the love that I wanted to. I'd like to start by thanking the Arthritis Foundation. I cannot express to you how much they have changed our lives. We would not have been able to attend this year if it wasn't for them. They have done so much for us! We try to give back as much as we can, but I will forever feel in their debt.
The JA Conference this year was near Washington D.C., in a Marriott in Crystal City, VA. The hotel and its view were both beautiful! The conference started on Thursday. We didn't arrive in D.C. until after the first evening's festivities were mostly wrapped up. We did have the opportunity to attend the first networking sessions. Those are very important. They broke the parents into mom & dad groups, and the kids were with their own ages. It's so cool to get together in a large room filled with other people that are going through exactly the same things as you. This years added appeal for me? My Facebook groups! I am so blessed to have found these wonderful ladies (& a few gentlemen) on Facebook. Each and every single one of them is amazing in their own way. Many have raised a staggeringly high amount of money for the AF. Most are trying to raise awareness, some are trying to start non-profits, some are donating to their hospital's children's rooms. Some are dealing with extremely sick children; others are just trying to get by as single parents with chronically ill children. Each one is amazing in their own way. This year as our group is nearing the one year "together" mark, many of us were able to meet in person! It was truly a huge blessing meeting these people. (Have I stressed that enough? You just couldn't know unless you went!) I truly felt at home, excited, energized, and with my family. It was a beautiful weekend! Not nearly long enough. I soooo wanted more time with the Amy's & children :) I need to get out more. I don't get out enough, so when I do I am completely overwhelmed. I don't know where the time went! I don't think there could possibly have been enough time to chat with all of these people the way I wanted to. Love you all!
Friday- The speakers during the opening session talked about some of the CARRA group's research and clinical studies. One of the speakers was Norman T. Ilowite, MD, the principal investigator of the RAPPORT study. This study is extremely important to the parents and children affected by Still's Disease, a systemic form of Juvenile Autoimmune Arthritis, or SJIA. This session also addressed the importance of participating in and supporting clinical trials.
We had our choice of where to go for the next round. We chose "Other Pediatric Rheumatic Diseases", hosted by Dr. Natasha Ruth. This session addressed different forms of vasculitis, Lupus, MCTD, Dermatomyositis, and Kawasaki's Disease. We learned a lot in this session, including what some of the bumps on Emily's hands may be from, that you can have a +ANA and not have an autoimmune disease; we learned about central nervous system disorders, and we learned the Emily should have an Echocardiogram yearly. I also asked a question that has been bugging me for a while during this session. To me, through all of my research I believed that, while many people with Mixed Connective Tissue Disease may have myositis symptoms, from her initial onset I truly believed that Emily had developed the DM as a separate disease. I also believe that she did at some points have myositis features, before she developed the full-blown disease. I asked this doctor if that was, indeed, possible. She agreed that it sounded likely in our case. This means that, while having no confirmed systemic features right now, Emily has 2 systemic disease. (I later confirmed with Dr. Rider, also.)
The next class that I went to was "JA Perspectives Panel". There were several speakers here, all of which either had JA as children or have been parenting children with JA for a significant amount of time. This is a great time to ask questions about what the future may potentially hold, or how to handle certain situations.
The next class that we went to was "Medications Used Commonly in Children with Rheumatologic Diseases", presented by Dr. Sandra Hong. OMGosh!!! If I was ever able to just move to follow a doctor, I would follow her. I love our rheumy's, I trust them, I know they have our child's best interest at heart. However, this little lady is a huge ball of energy! She looks about 25 (gotta love Asians!), and she spoke like a teenager. This would create obvious appeal to the kids. She was so cool & down to Earth! Kevin & I totally loved her. He didn't go to this class with me, but we had a pow-wow in the hallway the next day with her. She wanted to make sure that we didn't have any questions, that she discussed what we needed to know about, etc. She gave us some really great advice on meds and tests to keep in mind. She was seriously awesome.
Saturday brought an opening session on advocacy, as well as an awards presentation. We had somewhat of an inside view into the health care plan, how to make friends with your representatives, how to gain approval for your cause, etc. This was very important information since we really don't have enough people meeting our politicians advocating for our kids. This was hosted by Kevin Brennan & Calaneet Balas.
We chose to go to "To Rest is to Rust" next, hosted by Jennifer Horonjeff, MS. We missed half of this session as we ran into Dr. Lisa Rider, co- author of "Myositis and You: A Guide to Juvenile Dermatomyositis for Patients, Families, and Healthcare Providers". I was sooooooo excited to meet her!!! I discussed another CARRA group research study with her, "Rituximab in Refractory Adult and Juvenile Myositis (RIM) Study". This was huge to me because our rheumy had asked us Wednesday to consider trying this. I was able to speak with several people that have tried this, parents of children that are on it, and Dr's Hong & Rider. This conversation with Dr. Rider helped me to make up my mind for sure to try this approach. She was so cool, so brilliant and so sweet! She told me that I could always call her office with questions and she would be more than happy to help. How many doctors would make an offer like that? I really appreciated this time with her.
When we finally got into the session we were headed to, it was mostly over. However, we caught enough to figure out that we don't really fit into a category at the moment. There are a lot of things that Emily can't do because Prednisone can cause ostopenia (brittle bones). The speaker was sooooo cool! She was another twenty-something that I really hope also spoke to the teens. She was pretty awesome. She was very funny & animated and used visual aids to help make her audience understand.
After lunch we chose to head to "JIA & Jaw Issues" with Dr. Randy Cron.This brought up some scary points, like most children have jaw involvement and don't even know it! Up to 81% of JA kids have jaw issues. This can cause the jaw to not grow properly, causing deformity with a "short" jaw. Most docs don't think to order an MRI, and if they do, most radiologists don't know how to read them for children. How astonishing is that??? We missed a good chunk of this class speaking to Dr. Hong, but what we caught was rather unsettling in content but very informative! Excellent speaker and session.
Our last session of that day was on "Community & Financial Resources from A-Z". Honestly, I knew a lot of this already. There were a few good links that I wrote down, but I had already researched this area a lot. I thought maybe I had overlooked something, but I guess not. For a parent new to having a sick child, this would have been a huge help.
Overall, we learned so much! It was so good to be able to keep Emily & her brother together. They were in the same room as some other Florida children so Emily felt a bit more comfortable than last year. (It was a mistake bringing her to Philly without her brother.) Also, we didn't know that she was more sick at the time. It was a few months later that the puzzle pieces came together. It was good for my son to be with other JA kids. They had a session with Mr. Byron Janis, pianist, songwriter & Psoriatic Arthritis patient. I was really excited about this since my son has psoriasis with no arthritis. We don't know anyone else with psoriasis that is his age, or even with psoriasis as visible as his.
This was also a fantastic time for my oldest. At 16, I thought that she may be bored. Apparently, she did, too. Not so much :) She asked if she can come back next year. I don't think that she has really understood all that her sister goes through, either. I believe this experience helped her to "get it" more. I'm so glad that we were able to go as a family. Everyone really needed this.
One more note on the AF- recently a good friend was laid off. We all know the economy is horrid. Arthritis is so misunderstood and under-appreciated, & while the AF has very few paid employees, it's hard to keep all of them right now. While we are sure that he will do very well in future endeavors, we know how much this person did for our children. It was his heart that helped many of us in Florida come together. Between Facebook and planning days for us to meet, he got us together. He started the "Mom Squad". This was hugely important for me. This made me feel I could be more proactive than reactive, & I was making a difference. I'm hopeful that this program will continue to grow, but I'm sure it won't be with as much love and nourishment as he provided. And he waited until after the conference to tell us all so we wouldn't be sad there! How sweet is that??? We are very grateful to have had such a kind, loving heart working so diligently for our children. I won't name names, but he knows who he is ;) I know he will remain a friend on FB and we'll probably meet up again, but I will continue to mourn the loss of his presence with the AF. I will continue to do all I can, maybe even more now. Thank you for all of your hard work for us. Luv ya!
The JA Conference this year was near Washington D.C., in a Marriott in Crystal City, VA. The hotel and its view were both beautiful! The conference started on Thursday. We didn't arrive in D.C. until after the first evening's festivities were mostly wrapped up. We did have the opportunity to attend the first networking sessions. Those are very important. They broke the parents into mom & dad groups, and the kids were with their own ages. It's so cool to get together in a large room filled with other people that are going through exactly the same things as you. This years added appeal for me? My Facebook groups! I am so blessed to have found these wonderful ladies (& a few gentlemen) on Facebook. Each and every single one of them is amazing in their own way. Many have raised a staggeringly high amount of money for the AF. Most are trying to raise awareness, some are trying to start non-profits, some are donating to their hospital's children's rooms. Some are dealing with extremely sick children; others are just trying to get by as single parents with chronically ill children. Each one is amazing in their own way. This year as our group is nearing the one year "together" mark, many of us were able to meet in person! It was truly a huge blessing meeting these people. (Have I stressed that enough? You just couldn't know unless you went!) I truly felt at home, excited, energized, and with my family. It was a beautiful weekend! Not nearly long enough. I soooo wanted more time with the Amy's & children :) I need to get out more. I don't get out enough, so when I do I am completely overwhelmed. I don't know where the time went! I don't think there could possibly have been enough time to chat with all of these people the way I wanted to. Love you all!
Friday- The speakers during the opening session talked about some of the CARRA group's research and clinical studies. One of the speakers was Norman T. Ilowite, MD, the principal investigator of the RAPPORT study. This study is extremely important to the parents and children affected by Still's Disease, a systemic form of Juvenile Autoimmune Arthritis, or SJIA. This session also addressed the importance of participating in and supporting clinical trials.
We had our choice of where to go for the next round. We chose "Other Pediatric Rheumatic Diseases", hosted by Dr. Natasha Ruth. This session addressed different forms of vasculitis, Lupus, MCTD, Dermatomyositis, and Kawasaki's Disease. We learned a lot in this session, including what some of the bumps on Emily's hands may be from, that you can have a +ANA and not have an autoimmune disease; we learned about central nervous system disorders, and we learned the Emily should have an Echocardiogram yearly. I also asked a question that has been bugging me for a while during this session. To me, through all of my research I believed that, while many people with Mixed Connective Tissue Disease may have myositis symptoms, from her initial onset I truly believed that Emily had developed the DM as a separate disease. I also believe that she did at some points have myositis features, before she developed the full-blown disease. I asked this doctor if that was, indeed, possible. She agreed that it sounded likely in our case. This means that, while having no confirmed systemic features right now, Emily has 2 systemic disease. (I later confirmed with Dr. Rider, also.)
The next class that I went to was "JA Perspectives Panel". There were several speakers here, all of which either had JA as children or have been parenting children with JA for a significant amount of time. This is a great time to ask questions about what the future may potentially hold, or how to handle certain situations.
The next class that we went to was "Medications Used Commonly in Children with Rheumatologic Diseases", presented by Dr. Sandra Hong. OMGosh!!! If I was ever able to just move to follow a doctor, I would follow her. I love our rheumy's, I trust them, I know they have our child's best interest at heart. However, this little lady is a huge ball of energy! She looks about 25 (gotta love Asians!), and she spoke like a teenager. This would create obvious appeal to the kids. She was so cool & down to Earth! Kevin & I totally loved her. He didn't go to this class with me, but we had a pow-wow in the hallway the next day with her. She wanted to make sure that we didn't have any questions, that she discussed what we needed to know about, etc. She gave us some really great advice on meds and tests to keep in mind. She was seriously awesome.
Saturday brought an opening session on advocacy, as well as an awards presentation. We had somewhat of an inside view into the health care plan, how to make friends with your representatives, how to gain approval for your cause, etc. This was very important information since we really don't have enough people meeting our politicians advocating for our kids. This was hosted by Kevin Brennan & Calaneet Balas.
We chose to go to "To Rest is to Rust" next, hosted by Jennifer Horonjeff, MS. We missed half of this session as we ran into Dr. Lisa Rider, co- author of "Myositis and You: A Guide to Juvenile Dermatomyositis for Patients, Families, and Healthcare Providers". I was sooooooo excited to meet her!!! I discussed another CARRA group research study with her, "Rituximab in Refractory Adult and Juvenile Myositis (RIM) Study". This was huge to me because our rheumy had asked us Wednesday to consider trying this. I was able to speak with several people that have tried this, parents of children that are on it, and Dr's Hong & Rider. This conversation with Dr. Rider helped me to make up my mind for sure to try this approach. She was so cool, so brilliant and so sweet! She told me that I could always call her office with questions and she would be more than happy to help. How many doctors would make an offer like that? I really appreciated this time with her.
When we finally got into the session we were headed to, it was mostly over. However, we caught enough to figure out that we don't really fit into a category at the moment. There are a lot of things that Emily can't do because Prednisone can cause ostopenia (brittle bones). The speaker was sooooo cool! She was another twenty-something that I really hope also spoke to the teens. She was pretty awesome. She was very funny & animated and used visual aids to help make her audience understand.
After lunch we chose to head to "JIA & Jaw Issues" with Dr. Randy Cron.This brought up some scary points, like most children have jaw involvement and don't even know it! Up to 81% of JA kids have jaw issues. This can cause the jaw to not grow properly, causing deformity with a "short" jaw. Most docs don't think to order an MRI, and if they do, most radiologists don't know how to read them for children. How astonishing is that??? We missed a good chunk of this class speaking to Dr. Hong, but what we caught was rather unsettling in content but very informative! Excellent speaker and session.
Our last session of that day was on "Community & Financial Resources from A-Z". Honestly, I knew a lot of this already. There were a few good links that I wrote down, but I had already researched this area a lot. I thought maybe I had overlooked something, but I guess not. For a parent new to having a sick child, this would have been a huge help.
Overall, we learned so much! It was so good to be able to keep Emily & her brother together. They were in the same room as some other Florida children so Emily felt a bit more comfortable than last year. (It was a mistake bringing her to Philly without her brother.) Also, we didn't know that she was more sick at the time. It was a few months later that the puzzle pieces came together. It was good for my son to be with other JA kids. They had a session with Mr. Byron Janis, pianist, songwriter & Psoriatic Arthritis patient. I was really excited about this since my son has psoriasis with no arthritis. We don't know anyone else with psoriasis that is his age, or even with psoriasis as visible as his.
This was also a fantastic time for my oldest. At 16, I thought that she may be bored. Apparently, she did, too. Not so much :) She asked if she can come back next year. I don't think that she has really understood all that her sister goes through, either. I believe this experience helped her to "get it" more. I'm so glad that we were able to go as a family. Everyone really needed this.
One more note on the AF- recently a good friend was laid off. We all know the economy is horrid. Arthritis is so misunderstood and under-appreciated, & while the AF has very few paid employees, it's hard to keep all of them right now. While we are sure that he will do very well in future endeavors, we know how much this person did for our children. It was his heart that helped many of us in Florida come together. Between Facebook and planning days for us to meet, he got us together. He started the "Mom Squad". This was hugely important for me. This made me feel I could be more proactive than reactive, & I was making a difference. I'm hopeful that this program will continue to grow, but I'm sure it won't be with as much love and nourishment as he provided. And he waited until after the conference to tell us all so we wouldn't be sad there! How sweet is that??? We are very grateful to have had such a kind, loving heart working so diligently for our children. I won't name names, but he knows who he is ;) I know he will remain a friend on FB and we'll probably meet up again, but I will continue to mourn the loss of his presence with the AF. I will continue to do all I can, maybe even more now. Thank you for all of your hard work for us. Luv ya!
Thursday, June 9, 2011
The elbows, labs & PFT
I've had some concerns. I had a list of things to bring up at our last infusion, but since the doctors weren't in, I thought I'd wait until our next appointment. Also, her labs were only 2 points out of the high range, so I was concerned that it could be a flare starting or it could be that her dose of Methotrexate was too high. She was hoping that would be it. Emily has always been the child that actually liked her Methotrexate shots, but she says that she isn't as fond of it at her current dose. Well, I guess I worried for no reason on that note. When I called to discuss a few things today, the nurse practitioner said that her labs look great! I had thought her liver enzymes looked high, but she said that everything is right where it should be. We still had other things to discuss, though.
While we were at Occupational Therapy yesterday, her therapist looked at her elbows again. She determined that she has tendonitis in both elbows, her left being worse than her right. She and the nurse practitioner both agree that it could be regular tendonitis or it could be from the Dermatomyositis. The current plan is to increase her NSAID (Mobic) to the correct dosage for her weight. Until that kicks in, we should double her Prednisone for 3-5 days. We can use ice or heat, and rub in BioFreeze as needed. We will also pay attention to what her appetite does during this time. She said that her poor appetite may be direct result of the Prednisone taper; it may be a sign that she isn't ready to taper down any more. We should monitor her appetite on the increased dose, then monitor it again on her current dose when we go back down.
My last concern was how often she's been getting sick. It seems like she's been sick constantly. Every month she's been on at least one, sometimes two, antibiotics. Granted, she's on 3 immune suppressors, but she was on 2 for years and didn't get sick as often. I have been concerned about the Pulminary Hypertension risk (23%) that she faces from the Mixed Connective Tissue Disease. She has asthma. I worry about this more, especially considering that every illness that she has had in the past 6 months is from an upper respiratory, or a direct result of asthma. The ARNP said that it could be that her immune system needs a boost from all of the suppressors. That could be determined through labwork, so they will add that immuno- panel to her list for next time. I requested repeating her Pulminary Function Test. Her last PFT was on her last day in the hospital. She just wanted to go home, she didn't want to be there, she was scared, and she was simply not having this. Needless to say, her test results came back "inconclusive". Since pulminary hypertension may not be picked up on during regular exams, I think this is a great idea, and should give us peace of mind.
All of this together *could* mean she may be starting to flare. I have no idea what to think at this point. I had thought that her arthritis was flaring, until I saw her labs, which made me believe that it was the JM flaring. Since I read the enzyme labs wrong, and the ARNP says even the inflammatory markers (that I didn't see before) came back great, it no longer looks like the labs point to it. But I'm still confused on the elbows. And the tummy. <*Sigh*> We'll get it figured out.
So, we have a full boat next appointment. What will we do to top that? Drive straight to DC for the Juvenile Arthritis Conference! This works out better, actually. Our appointment is on the 6th and the conference is the 7th. We'll be 2 hours closer from the hospital, this will save us a trip in a way. And we can stop somewhere overnight, taking our time. I think it's perfect. This way we won't be in a hurry, we have some down time, stopping time, and we should get there in decent time. All the way around I can't wait! So many people that I can't wait to meet "in person", so many questions that I have, and so many historical sights that I can't wait to show my children!!! This is going to be so wonderful! :) Thank you, Arthritis Foundation!!!
While we were at Occupational Therapy yesterday, her therapist looked at her elbows again. She determined that she has tendonitis in both elbows, her left being worse than her right. She and the nurse practitioner both agree that it could be regular tendonitis or it could be from the Dermatomyositis. The current plan is to increase her NSAID (Mobic) to the correct dosage for her weight. Until that kicks in, we should double her Prednisone for 3-5 days. We can use ice or heat, and rub in BioFreeze as needed. We will also pay attention to what her appetite does during this time. She said that her poor appetite may be direct result of the Prednisone taper; it may be a sign that she isn't ready to taper down any more. We should monitor her appetite on the increased dose, then monitor it again on her current dose when we go back down.
My last concern was how often she's been getting sick. It seems like she's been sick constantly. Every month she's been on at least one, sometimes two, antibiotics. Granted, she's on 3 immune suppressors, but she was on 2 for years and didn't get sick as often. I have been concerned about the Pulminary Hypertension risk (23%) that she faces from the Mixed Connective Tissue Disease. She has asthma. I worry about this more, especially considering that every illness that she has had in the past 6 months is from an upper respiratory, or a direct result of asthma. The ARNP said that it could be that her immune system needs a boost from all of the suppressors. That could be determined through labwork, so they will add that immuno- panel to her list for next time. I requested repeating her Pulminary Function Test. Her last PFT was on her last day in the hospital. She just wanted to go home, she didn't want to be there, she was scared, and she was simply not having this. Needless to say, her test results came back "inconclusive". Since pulminary hypertension may not be picked up on during regular exams, I think this is a great idea, and should give us peace of mind.
All of this together *could* mean she may be starting to flare. I have no idea what to think at this point. I had thought that her arthritis was flaring, until I saw her labs, which made me believe that it was the JM flaring. Since I read the enzyme labs wrong, and the ARNP says even the inflammatory markers (that I didn't see before) came back great, it no longer looks like the labs point to it. But I'm still confused on the elbows. And the tummy. <*Sigh*> We'll get it figured out.
So, we have a full boat next appointment. What will we do to top that? Drive straight to DC for the Juvenile Arthritis Conference! This works out better, actually. Our appointment is on the 6th and the conference is the 7th. We'll be 2 hours closer from the hospital, this will save us a trip in a way. And we can stop somewhere overnight, taking our time. I think it's perfect. This way we won't be in a hurry, we have some down time, stopping time, and we should get there in decent time. All the way around I can't wait! So many people that I can't wait to meet "in person", so many questions that I have, and so many historical sights that I can't wait to show my children!!! This is going to be so wonderful! :) Thank you, Arthritis Foundation!!!
JA Conference 2011!
Well, I found out from our Arthritis Foundation branch that we have been given another opportunity to go to the Juvenile Arthritis Conference this year!!! I am so excited!
Emily was first officially diagnosed with arthritis on January 10, 2008. We pretty much had to go it alone for the first two years. I had done tons of research, but I never found any blogs or anything for the first couple of years. I found a group, the "JA List", but I had a hard time keeping up because I work full-time and I'm crazy busy. I could read and keep up a bit, but I didn't feel a "connection". Honestly, I ended up spending more time reading the Caring Bridge entries of a woman on this list. She wrote about the horrible battles she and her little girl were fighting, trying to beat her arthritis. For whatever reason, I felt a strange connection to her, to her daughter, and felt somehow that her daughter was similar to mine. Granted, our battle wasn't nearly as tough back then, and it still isn't anywhere near the level that this little one had to deal with, but I really felt they had some crazy bond. Well, anyway, I read those blogs quite often, but still never really felt the full effects of the list.
In March of 2010 I ended up receiving an invitation for lunch with some other parent's of JA kids and a member of our (somewhat local) AF branch. (Luv ya, Tony!) This proved to be a life-changing lunch. This was the gateway that connected me to several of our area families, and a webpage that one had started just for JA families. Facebook started to become a tool for me to connect with these people.
After I met these people, I started to utilize my blog more. I had originally started it anonymously to gripe and complain, but I soon discovered that I didn't really do that. I later found Blogger and realized how easy it was to network. Suddenly I had a small (but growing) collection of blogs to follow, mostly written by families with children suffering from JA. A few of them found me on Facebook. I found a few people from the 2010 JA Conference on FB, wishing that I could have met them in Philly. The week that Emily was hospitalized, one of these FB mom's started a group called "Arthritis Friends". This family has completely changed my life. We now have 204 members, all of whom are amazingly encouraging, helpful, kind, and supportive. Several of us are going to the conference! We're trying to figure out the best ways to meet up :)
At last year's conference, I learned a LOT. Even having already done a ton of research on my own, I still learned a lot. There is truly something for everyone, from newly diagnosed to the fairly well self-taught. Just to be able to go and socialize with other people that understand is amazing. It's a wonderful way to make new friendships! What does it bring for the children?
The children have the opportunity to be with other children just like them. These kids are given the chance to be "normal". They can share and talk about their disease(s), or not. They play, make arts and crafts, have special events, and they have speakers that come to speak to them. They learn a bit about how important advocacy is, which I thought was really cool. Most importantly, they have other people that suffered from JA that offer up hope for their futures, and help them with coping mechanisms.
Who watches these kids? Well, the PALS in Emily's room last year worked for the Arthritis Foundation. Why are they there? To see who they are helping, to see the quiet strength and courage that our children have. To know that they working for a good cause, and to help them recharge and work harder through the year for our children. I am so grateful that this life- changing tool is available to us. I can't wait to go and meet my family that I haven't met yet, and see those that I have! I love you ladies! <3
*** I've met my best friends on FaceBook*** <3
Emily was first officially diagnosed with arthritis on January 10, 2008. We pretty much had to go it alone for the first two years. I had done tons of research, but I never found any blogs or anything for the first couple of years. I found a group, the "JA List", but I had a hard time keeping up because I work full-time and I'm crazy busy. I could read and keep up a bit, but I didn't feel a "connection". Honestly, I ended up spending more time reading the Caring Bridge entries of a woman on this list. She wrote about the horrible battles she and her little girl were fighting, trying to beat her arthritis. For whatever reason, I felt a strange connection to her, to her daughter, and felt somehow that her daughter was similar to mine. Granted, our battle wasn't nearly as tough back then, and it still isn't anywhere near the level that this little one had to deal with, but I really felt they had some crazy bond. Well, anyway, I read those blogs quite often, but still never really felt the full effects of the list.
In March of 2010 I ended up receiving an invitation for lunch with some other parent's of JA kids and a member of our (somewhat local) AF branch. (Luv ya, Tony!) This proved to be a life-changing lunch. This was the gateway that connected me to several of our area families, and a webpage that one had started just for JA families. Facebook started to become a tool for me to connect with these people.
After I met these people, I started to utilize my blog more. I had originally started it anonymously to gripe and complain, but I soon discovered that I didn't really do that. I later found Blogger and realized how easy it was to network. Suddenly I had a small (but growing) collection of blogs to follow, mostly written by families with children suffering from JA. A few of them found me on Facebook. I found a few people from the 2010 JA Conference on FB, wishing that I could have met them in Philly. The week that Emily was hospitalized, one of these FB mom's started a group called "Arthritis Friends". This family has completely changed my life. We now have 204 members, all of whom are amazingly encouraging, helpful, kind, and supportive. Several of us are going to the conference! We're trying to figure out the best ways to meet up :)
At last year's conference, I learned a LOT. Even having already done a ton of research on my own, I still learned a lot. There is truly something for everyone, from newly diagnosed to the fairly well self-taught. Just to be able to go and socialize with other people that understand is amazing. It's a wonderful way to make new friendships! What does it bring for the children?
The children have the opportunity to be with other children just like them. These kids are given the chance to be "normal". They can share and talk about their disease(s), or not. They play, make arts and crafts, have special events, and they have speakers that come to speak to them. They learn a bit about how important advocacy is, which I thought was really cool. Most importantly, they have other people that suffered from JA that offer up hope for their futures, and help them with coping mechanisms.
Who watches these kids? Well, the PALS in Emily's room last year worked for the Arthritis Foundation. Why are they there? To see who they are helping, to see the quiet strength and courage that our children have. To know that they working for a good cause, and to help them recharge and work harder through the year for our children. I am so grateful that this life- changing tool is available to us. I can't wait to go and meet my family that I haven't met yet, and see those that I have! I love you ladies! <3
*** I've met my best friends on FaceBook*** <3
Friday, June 3, 2011
Our amazing trip!
We had a truly magical week at Give Kids the World and the theme parks around it. On Sunday we arrived at the village, had lunch, checked in, then Kevin & the kids unpacked while I went to orientation. After I got back to the villa, we went to the pool. Before taking Procardia for her Raynaud's, Emily couldn't go in a pool that had a temp lower than bath water. I'm happy to say that we stayed at that pool for about 2 hours. And I think I broke my "bee curse". Yes, I know it sounds silly. I have always been a target for bees. For whatever reason, for the past few months, everywhere I go I find dead bees. Whether inside or outside, there have been dead bees everywhere. Well, I found a bee struggling in the pool. Despite always being a target, I grabbed a stick, pulled it out of the pool, and stuck it on a table in the sun to dry. I'm happy to say that I haven't seen a dead bee since. After we left the pool the kids went on the carousel. They had several turns before we went to go make their dream pillows & start the process for Emily's star.
On day 2 we met Rapunzel! I hadn't realized that it would take ONE HOUR to get from the parking lot to the inside of the Magic Kingdom. Thankfully I brought the paper with the info on where to go (the First Aid station) with us. There was a phone number to call in case we ran into any problems. I let them know our situation assuming they would tell us that the deal was off. Rapunzel was waiting for us when we got there. She was amazing!!! She stayed in character the whole time. She engaged all of my kids in conversation. Gir showed off some of her drawings, but mostly she & Emily chatted away. Em was sooo happy. She was still glowing when we went on our first ride. I'm still not sure what happened but somehow while getting off of the ride she hurt her elbow. Back to First Aid we went. After some time with an ice pack she was ready to go back out. About an hour or so later we went on the Peter Pan ride. While she was getting into the car they stopped the moving platform. That made her lose her balance and she once again hurt the elbow. Back we went to First Aid! This time we got an Ace bandage to go with her ice pack. She wasn't really sure if it was really from an injury or her arthritis. I believe it's a combo. Either way, she said today that it's finally starting to feel better. The rest of the day was less eventful. We stayed for the Electric Light Parade & the fireworks around Cinderella's castle. It was a magical day!
Day 3 brought us to Universal Studios Island's of Adventure. It had been Gir's dream to visit the Harry Potter area. After sleeping in to recover from the day before, we got her there ok. The crowds were unbelievable. People were everywhere! To get back through a store I went outside & around. I cannot deal with too many people, especially in shopping situations. I'm fine with being closed in like with MRI, but not when I'm surrounded by people. I had to get out of there. One would think that in an area devoted to kids and adventure, there would be things for the younger set to do. Nope. There really wasn't much for my little guys to do there, so we split up. I took the little peeps to Dr. Suess land & Toon Town while Kevin & Gir hung in Potter Land. From that point on the kids pretty much enjoyed the rest of the day. Emily told me the next day that when we were on one of the water rides, she felt like she couldn't breathe. I wondered. She had a weird look on her face. She seemed more fragile the whole week. I also think that may have been the day that she hit her head on a ride. That hurt her all week. She really enjoyed the Spider Man ride here. And Zach got to be "Special Conductor of the Day" on a ride in Suessville. After we left we had to go in search of a battery charger for the camera. My batteries died after about 7 pics in Universal. We had attempted to charge it the night before but apparently the USB to DC converter for the iPhone isn't compatible like you'd think. I also picked up a new battery but only just in case my battery didn't charge.
Day 4 was Sea World. After the hustle & bustle of Harry Potter land we needed a day of down time. We figured that Sea World would provide the perfect opportunity. I guess the dolphins just don't hold as big a draw as Harry Potter. The park was far from a ghost town, but it wasn't crowded either. Perfect! Kevin was really getting tired of crowds of people cutting him off while pushing the chair, running into him, running their kids into him, or jumping over the chair while moving. (Seriously.) Sea World was our first day that we felt able to relax. It was a wonderful day just looking at the sea life, watching shows, and feeding the animals. My favorite moments of the week were spent here, watching 2 of the kids feed the dolphins. My son was off pouting in a corner because he wanted to go ride rides instead of feed the dolphins, but my girls had a blast. There was such joy on their faces. And who doesn't love dolphins? I was really excited. I love the stingrays, too. Em's more scared of them, but Gir & I love them. I am NOT a photographer, but I lucked into this shot:
Isn't he cute??? We didn't get to go on the Manta like I really wanted to, but we did catch one dolphin show & the new Shamu show, "One Ocean". We left feeling recharged and happy.
Day 5 we decided on Animal Kingdom. As with Sea World, I really felt happy here. It's amazing how many people rush around trying to see things but completely overlook the obvious. AK is such an amazingly beautiful place, created out of love. There were so many things that I was totally drawn to. While I could happily work at Sea World, I could totally live at AK. The girl always enjoy animals, so they loved it. It was so cool just looking around, wondering what you would find next. I took tons of pics here because I really fell so in love with it. This was another magical day, but I did miss my dinosaurs. I was heartbroken about that. :( I have always had a love for dinosaurs and the mysteries surrounding them. I knew that my son would appreciate it, and Gir thinks they're cool. I really wanted to take my kids to see the dinosaurs, and we totally missed it. I think I moped the rest of the day. I knew how stupid that sounds, but I couldn't get past it.
That night was Christmas at the village. We made it just in time. They actually do pictures with Santa for the kids, a celebration with cotton candy and snow, and they give every child a toy. We are so in awe of that village. It's amazing!
Day 6 was our Hollywood Studios day. We slept in again. The kids had a hard time keeping up with me :) We are just not morning people. We were told that the Star Wars parade started at 1 PM so we planned to get there in time for that. Nope. It started at noon. Getting there at 1 we missed it. But that was ok. We caught up with several characters and got pics and autographs. One of the many Disney employees that we met told us how to make the most out of our day. It was unbelievable how many volunteer at the village. They say that Disney encourages them to volunteer there. I thought that was sooo cool! Anyway, we did the Star Tours ride twice. The kids loved that. We did the Toy Story ride. Emily really loved that! She was so excited! It was really cool to see her so happy. I tried to get good pics, but of course it's always like a day late, dollar short. Gir tried out for American Idol (Disney version). While she was amazing, since she sang Evanescence she was told she wasn't "bubble gummy enough". She expected that, she really just wanted the critique. The judge was impressed with her voice so she was happy. I auditioned, too. I can't believe how nervous I was. It's been many years since I was active in the entertainment industry. I can't remember what play I was in last but I think my last talent show was 1992. I think the last time I sang karaoke in front of a crowd was when Gir was about 5. I didn't plan on singing so I didn't have anything picked out or rehearsed. I did ok enough in spite of that. She could tell that I had a good voice, but I was trembly and forgot my words since I didn't really plan on singing. I would have psyched myself up had I known... We watched the Muppet Show <3, rode the Tower of Terror, and the Aerosmith's Rockin' Roller Coaster (my new favorite ride!!!) My little boy went on it- his first loop coaster. I think we got him hooked! Emily... not so much. She had nightmares about the Tower of Terror. She didn't go on the roller coaster. I think it may have killed her. As we were leaving they were rounding people into the "Fantasm" show. Even though we really needed to get back & pack, we went to the show anyway. We all really enjoyed that. It was pretty amazing!
On our last day we had choices. To check out and hang at the village all day, go to our last day at Universal or just go home. Everyone voted for going home. I believe they were all homesick, but I also think to a degree they didn't want to leave so they wanted to just hurry up and do it. Get it over with. Not to mention Emily was stuffed up. I was truly afraid that she was getting sick.
She went to our pedi today. She said there's a lot of viral stuff going around, but just in case she put her on Omnicef. Omnicef is a strong antibiotic that they generally only use when everything else has failed. Em has been sick more than well the past few months so she figured this may clear up any residual drainage or infection. With the chance of pulminary hypertension always hanging over our heads, I worry. Especially now since she has been sick more often than not lately. The other thing that disturbs me now is that she's back to barely being able to eat anything now that she's on a lower dose of Prednisone. (6mgs is still high, but it certainly beats the 42mgs she started out on). Before I had always thought that she just needed Prilosec or Prevacid. Well, she's on Prilosec. She's been on Prilosec since October. I have a TON of questions that I wanted to ask the docs tomorrow when we go for her IV meds, but I found out today that the docs aren't in at all tomorrow. Since she wasn't seen last month, and most JM kids are seen every 4-6 weeks, I'm feeling a bit anxious about this. I wanted an opinion on the GI issues, I wanted to have her PFT (Pulminary Function Test) repeated since she really didn't want to be bothered the last time. It was her last day of her hospital stay and she really just wanted to leave. I also wanted to see if we could increase her Remicade and decrease her steroids. I'm not very patient. We shall see what happens tomorrow. I'm assuming that the ARNP's won't be there either, but one can hope, right? I'll post tomorrow or the next day how it goes.
On day 2 we met Rapunzel! I hadn't realized that it would take ONE HOUR to get from the parking lot to the inside of the Magic Kingdom. Thankfully I brought the paper with the info on where to go (the First Aid station) with us. There was a phone number to call in case we ran into any problems. I let them know our situation assuming they would tell us that the deal was off. Rapunzel was waiting for us when we got there. She was amazing!!! She stayed in character the whole time. She engaged all of my kids in conversation. Gir showed off some of her drawings, but mostly she & Emily chatted away. Em was sooo happy. She was still glowing when we went on our first ride. I'm still not sure what happened but somehow while getting off of the ride she hurt her elbow. Back to First Aid we went. After some time with an ice pack she was ready to go back out. About an hour or so later we went on the Peter Pan ride. While she was getting into the car they stopped the moving platform. That made her lose her balance and she once again hurt the elbow. Back we went to First Aid! This time we got an Ace bandage to go with her ice pack. She wasn't really sure if it was really from an injury or her arthritis. I believe it's a combo. Either way, she said today that it's finally starting to feel better. The rest of the day was less eventful. We stayed for the Electric Light Parade & the fireworks around Cinderella's castle. It was a magical day!
Day 3 brought us to Universal Studios Island's of Adventure. It had been Gir's dream to visit the Harry Potter area. After sleeping in to recover from the day before, we got her there ok. The crowds were unbelievable. People were everywhere! To get back through a store I went outside & around. I cannot deal with too many people, especially in shopping situations. I'm fine with being closed in like with MRI, but not when I'm surrounded by people. I had to get out of there. One would think that in an area devoted to kids and adventure, there would be things for the younger set to do. Nope. There really wasn't much for my little guys to do there, so we split up. I took the little peeps to Dr. Suess land & Toon Town while Kevin & Gir hung in Potter Land. From that point on the kids pretty much enjoyed the rest of the day. Emily told me the next day that when we were on one of the water rides, she felt like she couldn't breathe. I wondered. She had a weird look on her face. She seemed more fragile the whole week. I also think that may have been the day that she hit her head on a ride. That hurt her all week. She really enjoyed the Spider Man ride here. And Zach got to be "Special Conductor of the Day" on a ride in Suessville. After we left we had to go in search of a battery charger for the camera. My batteries died after about 7 pics in Universal. We had attempted to charge it the night before but apparently the USB to DC converter for the iPhone isn't compatible like you'd think. I also picked up a new battery but only just in case my battery didn't charge.
Day 4 was Sea World. After the hustle & bustle of Harry Potter land we needed a day of down time. We figured that Sea World would provide the perfect opportunity. I guess the dolphins just don't hold as big a draw as Harry Potter. The park was far from a ghost town, but it wasn't crowded either. Perfect! Kevin was really getting tired of crowds of people cutting him off while pushing the chair, running into him, running their kids into him, or jumping over the chair while moving. (Seriously.) Sea World was our first day that we felt able to relax. It was a wonderful day just looking at the sea life, watching shows, and feeding the animals. My favorite moments of the week were spent here, watching 2 of the kids feed the dolphins. My son was off pouting in a corner because he wanted to go ride rides instead of feed the dolphins, but my girls had a blast. There was such joy on their faces. And who doesn't love dolphins? I was really excited. I love the stingrays, too. Em's more scared of them, but Gir & I love them. I am NOT a photographer, but I lucked into this shot:
Isn't he cute??? We didn't get to go on the Manta like I really wanted to, but we did catch one dolphin show & the new Shamu show, "One Ocean". We left feeling recharged and happy.
Day 5 we decided on Animal Kingdom. As with Sea World, I really felt happy here. It's amazing how many people rush around trying to see things but completely overlook the obvious. AK is such an amazingly beautiful place, created out of love. There were so many things that I was totally drawn to. While I could happily work at Sea World, I could totally live at AK. The girl always enjoy animals, so they loved it. It was so cool just looking around, wondering what you would find next. I took tons of pics here because I really fell so in love with it. This was another magical day, but I did miss my dinosaurs. I was heartbroken about that. :( I have always had a love for dinosaurs and the mysteries surrounding them. I knew that my son would appreciate it, and Gir thinks they're cool. I really wanted to take my kids to see the dinosaurs, and we totally missed it. I think I moped the rest of the day. I knew how stupid that sounds, but I couldn't get past it.
That night was Christmas at the village. We made it just in time. They actually do pictures with Santa for the kids, a celebration with cotton candy and snow, and they give every child a toy. We are so in awe of that village. It's amazing!
Day 6 was our Hollywood Studios day. We slept in again. The kids had a hard time keeping up with me :) We are just not morning people. We were told that the Star Wars parade started at 1 PM so we planned to get there in time for that. Nope. It started at noon. Getting there at 1 we missed it. But that was ok. We caught up with several characters and got pics and autographs. One of the many Disney employees that we met told us how to make the most out of our day. It was unbelievable how many volunteer at the village. They say that Disney encourages them to volunteer there. I thought that was sooo cool! Anyway, we did the Star Tours ride twice. The kids loved that. We did the Toy Story ride. Emily really loved that! She was so excited! It was really cool to see her so happy. I tried to get good pics, but of course it's always like a day late, dollar short. Gir tried out for American Idol (Disney version). While she was amazing, since she sang Evanescence she was told she wasn't "bubble gummy enough". She expected that, she really just wanted the critique. The judge was impressed with her voice so she was happy. I auditioned, too. I can't believe how nervous I was. It's been many years since I was active in the entertainment industry. I can't remember what play I was in last but I think my last talent show was 1992. I think the last time I sang karaoke in front of a crowd was when Gir was about 5. I didn't plan on singing so I didn't have anything picked out or rehearsed. I did ok enough in spite of that. She could tell that I had a good voice, but I was trembly and forgot my words since I didn't really plan on singing. I would have psyched myself up had I known... We watched the Muppet Show <3, rode the Tower of Terror, and the Aerosmith's Rockin' Roller Coaster (my new favorite ride!!!) My little boy went on it- his first loop coaster. I think we got him hooked! Emily... not so much. She had nightmares about the Tower of Terror. She didn't go on the roller coaster. I think it may have killed her. As we were leaving they were rounding people into the "Fantasm" show. Even though we really needed to get back & pack, we went to the show anyway. We all really enjoyed that. It was pretty amazing!
On our last day we had choices. To check out and hang at the village all day, go to our last day at Universal or just go home. Everyone voted for going home. I believe they were all homesick, but I also think to a degree they didn't want to leave so they wanted to just hurry up and do it. Get it over with. Not to mention Emily was stuffed up. I was truly afraid that she was getting sick.
She went to our pedi today. She said there's a lot of viral stuff going around, but just in case she put her on Omnicef. Omnicef is a strong antibiotic that they generally only use when everything else has failed. Em has been sick more than well the past few months so she figured this may clear up any residual drainage or infection. With the chance of pulminary hypertension always hanging over our heads, I worry. Especially now since she has been sick more often than not lately. The other thing that disturbs me now is that she's back to barely being able to eat anything now that she's on a lower dose of Prednisone. (6mgs is still high, but it certainly beats the 42mgs she started out on). Before I had always thought that she just needed Prilosec or Prevacid. Well, she's on Prilosec. She's been on Prilosec since October. I have a TON of questions that I wanted to ask the docs tomorrow when we go for her IV meds, but I found out today that the docs aren't in at all tomorrow. Since she wasn't seen last month, and most JM kids are seen every 4-6 weeks, I'm feeling a bit anxious about this. I wanted an opinion on the GI issues, I wanted to have her PFT (Pulminary Function Test) repeated since she really didn't want to be bothered the last time. It was her last day of her hospital stay and she really just wanted to leave. I also wanted to see if we could increase her Remicade and decrease her steroids.
Friday, April 22, 2011
Thank you, April. Much needed!
April has probably been one of the best months we have had in quite some time. April has been filled with good news, and happiness over things to come :)
April was kicked off by our camping trip with our Cub Scout family. I had really been looking forward to this weekend as a little vacation. I was hoping that Emily would be ready to run around with her friends, but she actually wanted to be with me for 98% of our time there. The first night I think we kept everyone awake :) She has some, ummm, flatulence issues. Honestly, my little princess can let 'em loose better than any guy I know. Our first night in the tent she had gas so badly that she woke up her brother, and across the campsite her farts were heard. Kevin got a text saying "Gas gas gas :)" and we all about died laughing! This was around 4 A.M. We had a few people come over to the tent to see what all of the commotion was about. We were hysterical!!! What a great day that was. I love being out in the woods, and being there surrounded by family (including extended!) was really cool. We took a nice hike the next day. I wish I didn't have to push the wheelchair, that Emily wouldn't need the chair, but I'm so happy that she was able to come because of it. We saw some beautiful plant life along the way, & even stopped to grab some wild blackberries! That weekend was just what I needed to feel back in tune with reality.
Though it's not a huge, noticeable difference yet, Emily is definitely losing some of the steroid weight. She is so excited about that! She keeps telling me about different things that she can do, like button her pants more easily. I see a huge change in her attitude this month, likely due to the last steroid decrease. She has more energy, she wants to do more, she has some goals set. Because of this she is happier, doing things like walking more and playing Wii Sports again, and finally she is back to loving her brother like a friend! That has been the hardest part of all of this. She & her boy were always so close; suddenly she was cranky towards him more often than not, yelling at him and just being mean to him. I'm so glad they are playing together again. As Kevin said recently, harmony has been restored. It's the little things that we've missed, like that. She actually wants things again! I never thought that would make me happy! Yes, truly April has been a turning point.
She's doing well in school, too! She had the 2nd best grade in her class on her Time test. That is exciting partially because she missed that chapter & she worked extra hard to catch up! For a while she didn't care at all about her school work, or anything else. She's really determined right now, & I'm so thrilled to watch it happen. We had a fantastic IEP meeting in school for her. They are increasing her time with the school Physical Therapist, trying to pull her out during PE since she has such big limitations in there. She can do low impact things like walking, but nothing that could potentially cause injury as the steroids can cause brittle bones. Her teachers are very proud of how far she has come this year not only with her school work, but also with her attitude. She used to have "math breakdown", but she seems to have moved past that. We are very, very blessed that our school is as caring as they are. Before placing her in this class they really stopped to think & talk about where the best place for her would be. They were absolutely right to place her in this class. She isn't just taught; she is cared for. Obviously, any parent would want their kids cared for in school, but when it's a child that has dealt with so much, that really needed to be nurtured and loved, it is much more appreciated. I love these teachers in a way that I don't think they could understand. You just couldn't know how much their love for her has meant to me, or to her. They have impacted her life in a huge way. Truly that is God watching out for us, trying to make some things easier. They have been a gift.
Our Make A Wish volunteers called just the other day to say that we have been approved for our Disney Make A Wish trip! We are all so excited! All that I need to be happy is to watch the kids be happy; that makes this a dream come true for me. I was so happy that as soon as I hung up with our volunteer, I burst into tears. The kids kept asking me what was wrong :) I was just so happy. There have been so many things that Gir has wanted to do, but we haven't been able to accomodate her because of time or money. There are many things that this trip will address for her. And it will be wonderful for my dear, sweet little man. He's such a good boy, so tolerant & sensitive. He needs something really good. My mom told me the other night that he was telling her how things were going so well that he was worried about what was going to go wrong next. That's how things roll around here. I swear, it's always things that we could never have controlled in a million years. But hey, life is never boring!
More good news is that Kevin went for his yearly physical to find that everything looks good! His labs are where they should be, too. He is getting better slowly but surely. We go on our trip at the end of May. My hope is that by then Kevin & Emily will feel so much more like themselves. I want them to both feel good & have a great time. This trip needs to be magic, especially for Em, but for Kevin & the kids, too. I am so excited that I could burst! May is also our arthritis walk, too :) We look forward to that every year. It's so nice to be with people that understand you, even if you don't know them. I'm sure that I'm forgetting to mention a bunch of things, but I've covered the big stuff now.
I found a blog post that really hit me. It made me stop and think about how Emily must feel. Here is the "Arthritis Angels: A Walk In Someone Else's Shoes" post.
Hey, it's spring! Don't forget to look around at some of the beautiful flowers, including weeds, that have popped up :) I truly believe that these are gifts to us, meant to put things into perspective. Will you stop to smell the roses today? You really should....
April was kicked off by our camping trip with our Cub Scout family. I had really been looking forward to this weekend as a little vacation. I was hoping that Emily would be ready to run around with her friends, but she actually wanted to be with me for 98% of our time there. The first night I think we kept everyone awake :) She has some, ummm, flatulence issues. Honestly, my little princess can let 'em loose better than any guy I know. Our first night in the tent she had gas so badly that she woke up her brother, and across the campsite her farts were heard. Kevin got a text saying "Gas gas gas :)" and we all about died laughing! This was around 4 A.M. We had a few people come over to the tent to see what all of the commotion was about. We were hysterical!!! What a great day that was. I love being out in the woods, and being there surrounded by family (including extended!) was really cool. We took a nice hike the next day. I wish I didn't have to push the wheelchair, that Emily wouldn't need the chair, but I'm so happy that she was able to come because of it. We saw some beautiful plant life along the way, & even stopped to grab some wild blackberries! That weekend was just what I needed to feel back in tune with reality.
Though it's not a huge, noticeable difference yet, Emily is definitely losing some of the steroid weight. She is so excited about that! She keeps telling me about different things that she can do, like button her pants more easily. I see a huge change in her attitude this month, likely due to the last steroid decrease. She has more energy, she wants to do more, she has some goals set. Because of this she is happier, doing things like walking more and playing Wii Sports again, and finally she is back to loving her brother like a friend! That has been the hardest part of all of this. She & her boy were always so close; suddenly she was cranky towards him more often than not, yelling at him and just being mean to him. I'm so glad they are playing together again. As Kevin said recently, harmony has been restored. It's the little things that we've missed, like that. She actually wants things again! I never thought that would make me happy! Yes, truly April has been a turning point.
She's doing well in school, too! She had the 2nd best grade in her class on her Time test. That is exciting partially because she missed that chapter & she worked extra hard to catch up! For a while she didn't care at all about her school work, or anything else. She's really determined right now, & I'm so thrilled to watch it happen. We had a fantastic IEP meeting in school for her. They are increasing her time with the school Physical Therapist, trying to pull her out during PE since she has such big limitations in there. She can do low impact things like walking, but nothing that could potentially cause injury as the steroids can cause brittle bones. Her teachers are very proud of how far she has come this year not only with her school work, but also with her attitude. She used to have "math breakdown", but she seems to have moved past that. We are very, very blessed that our school is as caring as they are. Before placing her in this class they really stopped to think & talk about where the best place for her would be. They were absolutely right to place her in this class. She isn't just taught; she is cared for. Obviously, any parent would want their kids cared for in school, but when it's a child that has dealt with so much, that really needed to be nurtured and loved, it is much more appreciated. I love these teachers in a way that I don't think they could understand. You just couldn't know how much their love for her has meant to me, or to her. They have impacted her life in a huge way. Truly that is God watching out for us, trying to make some things easier. They have been a gift.
Our Make A Wish volunteers called just the other day to say that we have been approved for our Disney Make A Wish trip! We are all so excited! All that I need to be happy is to watch the kids be happy; that makes this a dream come true for me. I was so happy that as soon as I hung up with our volunteer, I burst into tears. The kids kept asking me what was wrong :) I was just so happy. There have been so many things that Gir has wanted to do, but we haven't been able to accomodate her because of time or money. There are many things that this trip will address for her. And it will be wonderful for my dear, sweet little man. He's such a good boy, so tolerant & sensitive. He needs something really good. My mom told me the other night that he was telling her how things were going so well that he was worried about what was going to go wrong next. That's how things roll around here. I swear, it's always things that we could never have controlled in a million years. But hey, life is never boring!
More good news is that Kevin went for his yearly physical to find that everything looks good! His labs are where they should be, too. He is getting better slowly but surely. We go on our trip at the end of May. My hope is that by then Kevin & Emily will feel so much more like themselves. I want them to both feel good & have a great time. This trip needs to be magic, especially for Em, but for Kevin & the kids, too. I am so excited that I could burst! May is also our arthritis walk, too :) We look forward to that every year. It's so nice to be with people that understand you, even if you don't know them. I'm sure that I'm forgetting to mention a bunch of things, but I've covered the big stuff now.
I found a blog post that really hit me. It made me stop and think about how Emily must feel. Here is the "Arthritis Angels: A Walk In Someone Else's Shoes" post.
Hey, it's spring! Don't forget to look around at some of the beautiful flowers, including weeds, that have popped up :) I truly believe that these are gifts to us, meant to put things into perspective. Will you stop to smell the roses today? You really should....
Sunday, April 17, 2011
International Autoimmune Arthritis Movement Awareness!
Please feel free to share this info! These facts came from IAMM's Facebook Page. You may also visit their main site here.
Can a baby have degenerative, wear and tear arthritis in his/her joints? Of course they cannot. The commonly used term “arthritis” refers to Osteoarthritis, a condition where cartilage around the joints becomes thin due to wear and tear, age, or injury. A baby has not lived long enough to endure this kind of damage. A child’s form of ‘arthritis’, therefore, is of an autoimmune nature. Autoimmune Arthritis is an autoimmune disease which causes the body to attack the healthy tissues of the joints, connective tissues and surrounding areas (including organs).
So before you say, “that person/child/baby is too young to have arthritis”, realize it may be a different strand of arthritis that is not caused by aging. See Stacey's amazing awareness video here.
Osteoarthritis, a degenerative arthritis often referred to as simply “arthritis”, is caused by age, wear-and-tear, or injury. Autoimmune Arthritis (Rheumatoid Arthritis, Psoriatic Arthritis, Lupus, Scleroderma, Ankylosing Spondylitis, Still’s Disease, Juvenile Arthritis) is caused by the immune system mistakenly attacking its own cells, causing inflammation in connective tissue, joints, and organs. Autoimmune Arthritis is NOT caused by degeneration, age, weight, or malnutrition.
“Arthritis”, defined, means joint pain. The term “arthritis” refers to Osteoarthritis, a degenerative, localized joint condition caused by wear and tear, age, or injury. Symptoms of “arthritis” include joint pain and some inflammation, but rarely swelling. It is localized to the weight bearing joint that has begun wearing down.
Autoimmune Arthritis (Rheumatoid Arthritis, Psoriatic Arthritis, Lupus, Scleroderma, Ankylosing Spondylitis, Still’s Disease, Juvenile Arthritis), is a systemic autoimmune disease. Symptoms of Autoimmune Arthritis also include joint pain but there is massive inflammation which often causes swelling. Systemic arthritis, unlike degenerative arthritis, is not localized; it can affect any part of the body at any time, even at rest. It is often accompanied by low-grade fevers, rashes, flu-like symptoms and debilitating fatigue.
Do you know that over-the-counter pain relievers, such as ibuprofen or heating creams, used often to treat the symptoms of degenerative arthritis (Osteoarthritis, often referred to as “arthritis”) are not the same medications prescribed to treat Autoimmune Arthritis (Rheumatoid Arthritis, Psoriatic Arthritis, Lupus, Scleroderma, Ankylosing Spondylitis, Still’s Disease, Juvenile Arthritis). Autoimmune Arthritis medications include anti-inflammatory, disease modifying drugs, including low-dose chemotherapy treatments.
Total average cost to purchase a month supply of ibuprofen and other topical ointments: $18.
Total average cost to purchase Autoimmune Arthritis medications: $2,500* (*number may decline based on insurance coverage).
Osteoarthritis, commonly referred to simply as “arthritis”, is caused by degeneration. This wear and tear arthritis (unless caused by injury) affects weight bearing joints and can take years to cause damage. Once the cartilage begins wearing away from the joints, it is referred to as “arthritis”. Pain begins once damage occurs.
Autoimmune Arthritis, an autoimmune disease, is caused by a problem within the body’s immune system. This type of arthritis affects any area in the body that contains joints or connective tissues (including organs). Pain often begins in the form of an unexplained injury, for it mimics that of a sprain. However, outside of the pain, it is often paired with an unexplained fever, flu-like symptoms and massive fatigue. Because blood work may return normal for several months or years, diagnosis becomes difficult until the damage can be seen on an x-ray or MRI. The pain begins often years before damage occurs.
Friday, April 8, 2011
Very good appointment!
I apologize for not updating sooner. My little bout with a sinus infection has become a battle. I have been feeling kind of like I was hit by a truck. Since I ache too much to sleep, I shall write :)
This past month has been a turning point for Emily, so I knew that this appointment would be good. Before as the steroids were so high and their effects hit her so hard, she had a rough time adjusting. I can't imagine how she was able to deal with the dosage that she started out with- physically or emotionally. Back in October she was started on 42mgs. She had 21mgs in the morning and the other 21 at night. With this appointment we continued on the taper that we started months ago. They dropped down to 6mgs this month! I had expected it would drop to that. Last month when they had us take her to 12mgs for 2 weeks & then 9mgs for three weeks, they told us they would likely drop her down to 6mgs this month. They also told us that this is generally around the time that you start to see the steroid weight drop off. That is huge because it is so uncomfortable. It is as hard for her to bend over as it is a pregnant lady, and her center of balance is off. She still has a long way to go but she knew that it was drop off because she can fully open her jaw now! That was yet another thing that had made her sad, & she has been waiting for the day where she could finally open her mouth again. Last visit they said that her muscle enzymes were better than they had seen them, and normal for the first time. This time they were even lower! That's huge.
They did decide to increase her Remicade for next time for her joints. Her back has been bothering her enough so that she wanted to get her infusion. I still expected the usual fear that grips her the day before, that causes a huge crying jag that night and has her silent and terrified the whole way over. Usually she barely speaks on the way. This time she was in a really good mood, really ready to go. She watched "Tangled" on the ride and was even singing along to the songs! I haven't really heard her sing since September. I think she knows that right now it's all downhill, so to speak. I try to hard to keep her educated and in the loop. She understands that this is what I've been telling her would happen. She told me the other day that she's really glad that we switched to Shands. I'm thrilled that she's happy there now, even if she does have a way of yelling at Dr. E every time we see her. I'm not sure why. I think that she resents her still from keeping her in the hospital, even though she knows it was for the best. I'm just happy that I can finally really say that she's doing very well. She does still have a long way to go, but she's not flaring right now. I love how she went from never telling anyone that she was hurting to telling me every little ache and pain. Sometimes it's silly things, but I'll take the silly if she's willing to talk about it. She's acting more like herself, talking to her brother like he's her best friend again, really trying to tackle school with a new enthusiasm, & she's really excited about Make A Wish. I am so, so glad that we have that so she has something amazing to look forward to. I truly believe that has a LOT to do with how happy she's been lately. At her lowest points it gave her something happy to think about. What a huge, huge blessing that is. I know that we have a long, possibly difficult road ahead with her disease. It could stay like it is, it could turn into full blown Scleroderma or Lupus. Or it's possible it could go into remission. We have to keep a vigilant eye out for signs of pulminary hypertension & other systemic signs, but right this minute she's the best she's been in a while.
There are many other children out there with arthritis that are not doing so well. Little GS has so many struggles with his vision. They actually had to put a drain in his eye. His family has been fighting for his vision for years. DSW has had more pain from arthritis that they can't control that she uses her wheelchair now way more than she should have to, but they are stumped. PL has been trying to be pain-free for three years now, & they still don't know how to help him yet. H&J are still looking for the meds that will help them, too. These are just the kids in our state. There are too many kids suffering silently. These brave little heroes need a cure.
This past month has been a turning point for Emily, so I knew that this appointment would be good. Before as the steroids were so high and their effects hit her so hard, she had a rough time adjusting. I can't imagine how she was able to deal with the dosage that she started out with- physically or emotionally. Back in October she was started on 42mgs. She had 21mgs in the morning and the other 21 at night. With this appointment we continued on the taper that we started months ago. They dropped down to 6mgs this month! I had expected it would drop to that. Last month when they had us take her to 12mgs for 2 weeks & then 9mgs for three weeks, they told us they would likely drop her down to 6mgs this month. They also told us that this is generally around the time that you start to see the steroid weight drop off. That is huge because it is so uncomfortable. It is as hard for her to bend over as it is a pregnant lady, and her center of balance is off. She still has a long way to go but she knew that it was drop off because she can fully open her jaw now! That was yet another thing that had made her sad, & she has been waiting for the day where she could finally open her mouth again. Last visit they said that her muscle enzymes were better than they had seen them, and normal for the first time. This time they were even lower! That's huge.
They did decide to increase her Remicade for next time for her joints. Her back has been bothering her enough so that she wanted to get her infusion. I still expected the usual fear that grips her the day before, that causes a huge crying jag that night and has her silent and terrified the whole way over. Usually she barely speaks on the way. This time she was in a really good mood, really ready to go. She watched "Tangled" on the ride and was even singing along to the songs! I haven't really heard her sing since September. I think she knows that right now it's all downhill, so to speak. I try to hard to keep her educated and in the loop. She understands that this is what I've been telling her would happen. She told me the other day that she's really glad that we switched to Shands. I'm thrilled that she's happy there now, even if she does have a way of yelling at Dr. E every time we see her. I'm not sure why. I think that she resents her still from keeping her in the hospital, even though she knows it was for the best. I'm just happy that I can finally really say that she's doing very well. She does still have a long way to go, but she's not flaring right now. I love how she went from never telling anyone that she was hurting to telling me every little ache and pain. Sometimes it's silly things, but I'll take the silly if she's willing to talk about it. She's acting more like herself, talking to her brother like he's her best friend again, really trying to tackle school with a new enthusiasm, & she's really excited about Make A Wish. I am so, so glad that we have that so she has something amazing to look forward to. I truly believe that has a LOT to do with how happy she's been lately. At her lowest points it gave her something happy to think about. What a huge, huge blessing that is. I know that we have a long, possibly difficult road ahead with her disease. It could stay like it is, it could turn into full blown Scleroderma or Lupus. Or it's possible it could go into remission. We have to keep a vigilant eye out for signs of pulminary hypertension & other systemic signs, but right this minute she's the best she's been in a while.
There are many other children out there with arthritis that are not doing so well. Little GS has so many struggles with his vision. They actually had to put a drain in his eye. His family has been fighting for his vision for years. DSW has had more pain from arthritis that they can't control that she uses her wheelchair now way more than she should have to, but they are stumped. PL has been trying to be pain-free for three years now, & they still don't know how to help him yet. H&J are still looking for the meds that will help them, too. These are just the kids in our state. There are too many kids suffering silently. These brave little heroes need a cure.
Friday, April 1, 2011
Where does the time go?
The past two or three weeks have just blown by. There are so many things that I have been wanting to write about, but I just haven't had time. Here I sit with my face feeling all sinus-pressurey, knowing that I won't be able to go to sleep, so now seems like a good time :)
We've had our usual ups & downs. I decided that we desperately needed something fun to do, so we took a Sunday & Monday over the kids spring break to go to the Rennaissance Festival and Busch Gardens. The kids had a blast, & I did, too. It was harder for Kevin. He's still trying to get back to himself, but he trooped along trying to make the best of it. My son was so excited for BG! We used to always have yearly passes, but we hadn't gone in a couple of years. It's amazing how much has changed, and how big my little people have gotten. They were interested in a whole different way now. It was a truly wonderful couple of days. It was eye opening in some ways. There were several kids around her age that just stared at her like she was an alien. Some parents, too. We tried to shift the focus off of her, but I think they are drawn in by her chair. I don't think that she noticed, & we weren't going to point it out. Then, on her first day back to school she came home angry. Two little kids were pointing and laughing at her. My sweet little girl went right up to them and yelled at them. I am so proud of her. I think that was a first.
Emily started to cough last week. I have gotten to this point where I really just dread taking her to the doctors. We are just so over it. We always seem to have someone get sick whenever we have plans, or at every other bad time. I often think how nice it would be to have just one month without a doctor visit. Wouldn't that be lovely? We have a fantastic Pediatric Urgent Care center in our area, so I took her there. They're open the odd hours so you can go there when your pedi is closed. We went late Friday night. They have their own lab, x-ray machines, and pretty much everything that an ER would have, so it seemed like the best option. The only downfall is that they only accept one insurance per patient- not 2. And they don't take Medicaid. Our primary is United so I figured I'd just eat our copays because we were already there, and she felt comfortable. We were there for quite some time, but mostly because the doctor doesn't deal often with conditions like Emily's. (When you have something that only affects about 3 kids out of a million you find that many doctors aren't schooled on it.) I was thrilled that he took the time to educate himself before he came in to see her. For once it was only her asthma acting up :) The doc put her back to 30MGs of Prednisone for the week, up from her current 9MGs. We took her back to our regular pedi a few days later. She was clear, no asthma detected. Somehow, I wasn't really surprised when the nothing turned into a sinus infection. Our pedi actually told us to keep her inside until May. I'm not really sure how practical that is, but we will try. We go back to them on Monday, and then for her Remicade on Tuesday. I plan on asking her pedi if it's ok to take her camping. I have been dying to go; camping is like a vacation for me. I need to be in the woods, need to bond with nature for a while. We put off so many things already.
While Emily is recovering slowly from her sinus infection, we are counting down the days until her next infusion. She's only been on Remicade since October. We're still trying to find the right dosage for her. Normally we would have gone this week for her infusions, but the school & hospital is on spring break. (Crazy, eh?) That means waiting an extra week for her arthritis meds. Poor little bean is not having a good week. First it was her wrist, then her knee. Those seem to be better by now, but now it's her back. She was crying trying to get into her bed tonight. :( Her back is hurting her so badly right now. I thought that it was the muscle that she pulled at PT a few weeks ago, but Kevin is brilliant with massaging and feeling muscle abnormalities and he thinks it's the arthritis. (When it comes to muscles, I couldn't feel my way out of a paper bag...) I'm hoping that she can get through the next few days with minimal pain. Tuesday we'll have a very long drive. I hope she can handle it. I bought her "Tangled" since we all loved it so much. Maybe I can play that for her on the way up to the hospital to take her mind off of the pain.
Speaking of pain, the bills from these types of hospital/ doctor's visits are crazy!!! People may have thought that I was crazy when I said that I got social security for her, but look below at this insurance statement. This is what I get from our primary, before it goes off to Medicaid. (Thank you, Lord for Medicaid!!!) How can anyone afford copays like that??? I surely could not afford to pay $1100 a month just for treatments. Granted, it's better than $10,000 but, really??? Nope, she doesn't have anything serious wrong with her. We just like to waste money. Yup. I've heard that IVIg's cost something like $36,000 each. How can anyone afford these things? This is why I support the Arthritis Foundation's quest for a cure, and funding for NIH. (National Institute of Health) There has to be some better way to get people their medicines than IV only. There has to be other treatment options waiting in the wings for when these meds no longer work, but you've run out of options. There has to be a cure somewhere, some way. We just need the right people working to find it. It isn't fair for our kids to suffer so greatly, or for adults. It's so sad when your child tells you that they are looking forward to their infusion. To me, that is just wrong. We need to support better research, but we also need to raise awareness that many diseases under the arthritis umbrella are autoimmune, not caused by old age. It's just as unfair for someone to tell these victims that they can't be hurting because we can't "see" their pain.
We've had our usual ups & downs. I decided that we desperately needed something fun to do, so we took a Sunday & Monday over the kids spring break to go to the Rennaissance Festival and Busch Gardens. The kids had a blast, & I did, too. It was harder for Kevin. He's still trying to get back to himself, but he trooped along trying to make the best of it. My son was so excited for BG! We used to always have yearly passes, but we hadn't gone in a couple of years. It's amazing how much has changed, and how big my little people have gotten. They were interested in a whole different way now. It was a truly wonderful couple of days. It was eye opening in some ways. There were several kids around her age that just stared at her like she was an alien. Some parents, too. We tried to shift the focus off of her, but I think they are drawn in by her chair. I don't think that she noticed, & we weren't going to point it out. Then, on her first day back to school she came home angry. Two little kids were pointing and laughing at her. My sweet little girl went right up to them and yelled at them. I am so proud of her. I think that was a first.
Emily started to cough last week. I have gotten to this point where I really just dread taking her to the doctors. We are just so over it. We always seem to have someone get sick whenever we have plans, or at every other bad time. I often think how nice it would be to have just one month without a doctor visit. Wouldn't that be lovely? We have a fantastic Pediatric Urgent Care center in our area, so I took her there. They're open the odd hours so you can go there when your pedi is closed. We went late Friday night. They have their own lab, x-ray machines, and pretty much everything that an ER would have, so it seemed like the best option. The only downfall is that they only accept one insurance per patient- not 2. And they don't take Medicaid. Our primary is United so I figured I'd just eat our copays because we were already there, and she felt comfortable. We were there for quite some time, but mostly because the doctor doesn't deal often with conditions like Emily's. (When you have something that only affects about 3 kids out of a million you find that many doctors aren't schooled on it.) I was thrilled that he took the time to educate himself before he came in to see her. For once it was only her asthma acting up :) The doc put her back to 30MGs of Prednisone for the week, up from her current 9MGs. We took her back to our regular pedi a few days later. She was clear, no asthma detected. Somehow, I wasn't really surprised when the nothing turned into a sinus infection. Our pedi actually told us to keep her inside until May. I'm not really sure how practical that is, but we will try. We go back to them on Monday, and then for her Remicade on Tuesday. I plan on asking her pedi if it's ok to take her camping. I have been dying to go; camping is like a vacation for me. I need to be in the woods, need to bond with nature for a while. We put off so many things already.
While Emily is recovering slowly from her sinus infection, we are counting down the days until her next infusion. She's only been on Remicade since October. We're still trying to find the right dosage for her. Normally we would have gone this week for her infusions, but the school & hospital is on spring break. (Crazy, eh?) That means waiting an extra week for her arthritis meds. Poor little bean is not having a good week. First it was her wrist, then her knee. Those seem to be better by now, but now it's her back. She was crying trying to get into her bed tonight. :( Her back is hurting her so badly right now. I thought that it was the muscle that she pulled at PT a few weeks ago, but Kevin is brilliant with massaging and feeling muscle abnormalities and he thinks it's the arthritis. (When it comes to muscles, I couldn't feel my way out of a paper bag...) I'm hoping that she can get through the next few days with minimal pain. Tuesday we'll have a very long drive. I hope she can handle it. I bought her "Tangled" since we all loved it so much. Maybe I can play that for her on the way up to the hospital to take her mind off of the pain.
Speaking of pain, the bills from these types of hospital/ doctor's visits are crazy!!! People may have thought that I was crazy when I said that I got social security for her, but look below at this insurance statement. This is what I get from our primary, before it goes off to Medicaid. (Thank you, Lord for Medicaid!!!) How can anyone afford copays like that??? I surely could not afford to pay $1100 a month just for treatments. Granted, it's better than $10,000 but, really??? Nope, she doesn't have anything serious wrong with her. We just like to waste money. Yup. I've heard that IVIg's cost something like $36,000 each. How can anyone afford these things? This is why I support the Arthritis Foundation's quest for a cure, and funding for NIH. (National Institute of Health) There has to be some better way to get people their medicines than IV only. There has to be other treatment options waiting in the wings for when these meds no longer work, but you've run out of options. There has to be a cure somewhere, some way. We just need the right people working to find it. It isn't fair for our kids to suffer so greatly, or for adults. It's so sad when your child tells you that they are looking forward to their infusion. To me, that is just wrong. We need to support better research, but we also need to raise awareness that many diseases under the arthritis umbrella are autoimmune, not caused by old age. It's just as unfair for someone to tell these victims that they can't be hurting because we can't "see" their pain.
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| Remark Code Description Date of Service | | Billed Amount  | | Network Discount | | Applied to Deductible | | Paid by Plan | | Patient Responsibility | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
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| D2* Op Misc. Services 02/01/2011 - 02/28/2011 | $9,474.30 | $3,979.21 | $0.00 | $4,396.07 |
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| Subtotal(s) |
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| Totals | $9,474.30 | $3,979.21 | $0.00 | $4,396.07 | $1,099.02 | |||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
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| Amount You May Owe | $1,099.02 | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
Monday, March 14, 2011
JA Picnic, Make A Wish
After I got home from work, I laid down to watch TV, and woke up 5 hours later!!! (Oops!) The great part about it? It's 4 A.M., almost everyone is asleep, and I now have time to update without everyone talking to me at once :)
This has been a wonderful week! Starting with last Saturday, (which I realize is now more than a week ago). Last week, we made the trip over to Orlando to join up with the Arthritis Foundation's Juvenile Arthritis Family Picnic :) Unfortunately, Kevin was still radioactive and in isolation so he couldn't go, but I packed up all three kids. Gir thought that she would be bored. I knew better :) I knew that there would be some older siblings there. It is so awesome to be able to get the kids together with other kids that are suffering in ways similar to them. The beautiful thing about this is that when they get tired, no one bugs them to keep going. These kids understand each other in ways that most other kids can't. If they can't run, no one is going to name call, or harass them to get their way. The kids had a wonderful time connecting. It was really cool to look around and see the ways that certain people clicked with others. My son followed around little Dakota, the older woman for him :) Little Carolina & Cole clicked as well. They are both so little that it was absolutely adorable watching them! I tried to get pics but totally missed the opportunity. Emily made a special friend, also. I had wanted Emily to meet Parker for quite some time. I just knew that they would click. They seem to have similar problems at the moment, too. Em is really shy; she wouldn't just go talk to him. Somehow, they finally got talking! They chatted away for quite some time. They really understood each other- so important right now. While the kids were busy playing and getting to know each other, the adults had the opportunity to chat and compare notes. I had met most of our mom's before, but it honestly felt like I knew them all so well. (Thank you, Facebook!) It is so important to share your triumphs and frustrations with people that understand!!! Heidi brought books, including one that she had made based off of her blog! (Pretty cool, huh?) She also brought a few classics that got passed around. Some were for kids and others were for us adults. When this is what you live and breathe but don't get to talk about much to people in your normal daily life, this is very important. There is so much sympathy from family to family, children and parents alike. Those that are going through a LOT still think about other that are going through less. We have an amazing extended family now that I am so blessed to have met. Some great things really do come out of bad situations!
Proving how quickly things can happen for these immune suppressed children, Heidi's daughter got sick on the way home. She ended up going to the ER the next day and staying at the hospital for four days. You would never have had any idea that she was ill watching her play. We all know that often you can't tell with our kids. These little people are so used to feeling badly that until it gets very, very bad they can't often tell that they are sick. Of course, I think we all panicked over this. Worrying for her, hoping she would be all right sooner rather than later, but also hoping that our own children wouldn't get sick. For some it would be just plain disasterous.
I had such a wonderful time on Saturday that I actually felt relaxed for the whole week. Maybe having a three day weekend helped, too. I have been in a fantastic mood all week. By Wednesday night I was feeling a little edgy, waiting for the Make A Wish volunteers to come. On the one hand, I am so thrilled for Emily because just by telling her about, her attitude is better. Not that she's been unpleasant. Not by any means! It's just that she seemed to have no will to do anything before. It was so sad to always see her sitting at scouts alone while everyone was playing. They weren't excluding her; she was just too unhappy to want to play. Just thinking about her wishes has made her happier. Having them come over just made it real to her; she knew that I was truly following through with what I said.
When our Make A Wish volunteers came, they came bearing gifts for all of our kids. That is so important. I'm so happy that they try to make the siblings feel special, too. I try so hard to love them all equally, but of course there are more demands from Emily. I have to spend more time with her. No, we can't just go places like other families can. It depends on how well she feels for the day, if we need the wheelchair, how easy it will be to use the chair, etc. Most of the time we are home. It takes a toll on the other kids. I can't tell you how many times we've had to cancel plans or change them at the last moment because of health concerns. Anyway, one volunteer sat with me and we filled out paperwork and talked about the future. The other one sat with Emily and together they decided on her wishes. (They do it this way so that they make sure that the child understands that it's almost anything they want, and not what other people want them to do.) For her wishes Emily did ask for her Disney trip, or a hot tub, or to be a princess. They have them pick 3 in case they can't do one or two, or if the doctor vetoes the plan. It really didn't take long, and I think that Emily feels really good about this. It is so exciting to think about! Our rheumy said that they almost never turn down a Disney request.
I truly hope that the Disney one gets granted. That is what she wants most of all, and of course that is what all 3 kids will enjoy most. I had thought that it would be only Disney, but apparently it's a week in Orlando with tickets to any parks that you'd like to go to. I have heard that they make it absolute magic. No waiting in lines for most things, a MAW volunteer guides you through the parks, and often everyone goes out of their way for the MAW families. There's also a Cinderella meet in the castle. She would love that!
I am also using this as incentive to get her moving. I told her that while I don't mind taking her chair, I don't want her to have to use it every second we're there. I am hoping to use this to build her endurance back up a bit, and her muscle tissue, too. It's amazing what we'll do when there's something to look forward to! I'm hoping that this will also help her to burn off some of the steroid weight. This week we decrease her dosage to 9MGs daily! I can't wait until we're on 6MGs- that's where they say the weight will really start to drop off. One wonderful thing about the steroids is that she finally eats!!! This is the kid that wouldn't eat much of anything, who wouldn't try new things, who ate like a bird. Now this is the girl that carries one lunch menu around in her backpack, has one next to her bed, frequently reads them in an anticipatory fashion, and talks non-stop about food! Before we tried everything to get her to gain weight, but now we may have to worry about her gaining too much! It's better than being 42lbs at age 9, right? She's earned a new nickname: Sharky! :) She's so funny! We are soooo blessed! She's had a few joint issues, but nothing major. Her Remicade is increasing at her next appointment. Hopefully that will do the trick. My only worry is that she should be seen the first Tuesday of April but it will now be the 2nd Tuesday because all of the docs will be out of the office that whole week. She usually starts to hurt the day before, so I hope this doesn't result in a flare.
I have got to get to bed! Have a wonderful Monday! :)
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| Emily & Parker |
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| These 4 got along so well! My son has a huge crush on Dakota, and Emily & Parker clicked quickly. |
Proving how quickly things can happen for these immune suppressed children, Heidi's daughter got sick on the way home. She ended up going to the ER the next day and staying at the hospital for four days. You would never have had any idea that she was ill watching her play. We all know that often you can't tell with our kids. These little people are so used to feeling badly that until it gets very, very bad they can't often tell that they are sick. Of course, I think we all panicked over this. Worrying for her, hoping she would be all right sooner rather than later, but also hoping that our own children wouldn't get sick. For some it would be just plain disasterous.
I had such a wonderful time on Saturday that I actually felt relaxed for the whole week. Maybe having a three day weekend helped, too. I have been in a fantastic mood all week. By Wednesday night I was feeling a little edgy, waiting for the Make A Wish volunteers to come. On the one hand, I am so thrilled for Emily because just by telling her about, her attitude is better. Not that she's been unpleasant. Not by any means! It's just that she seemed to have no will to do anything before. It was so sad to always see her sitting at scouts alone while everyone was playing. They weren't excluding her; she was just too unhappy to want to play. Just thinking about her wishes has made her happier. Having them come over just made it real to her; she knew that I was truly following through with what I said.
When our Make A Wish volunteers came, they came bearing gifts for all of our kids. That is so important. I'm so happy that they try to make the siblings feel special, too. I try so hard to love them all equally, but of course there are more demands from Emily. I have to spend more time with her. No, we can't just go places like other families can. It depends on how well she feels for the day, if we need the wheelchair, how easy it will be to use the chair, etc. Most of the time we are home. It takes a toll on the other kids. I can't tell you how many times we've had to cancel plans or change them at the last moment because of health concerns. Anyway, one volunteer sat with me and we filled out paperwork and talked about the future. The other one sat with Emily and together they decided on her wishes. (They do it this way so that they make sure that the child understands that it's almost anything they want, and not what other people want them to do.) For her wishes Emily did ask for her Disney trip, or a hot tub, or to be a princess. They have them pick 3 in case they can't do one or two, or if the doctor vetoes the plan. It really didn't take long, and I think that Emily feels really good about this. It is so exciting to think about! Our rheumy said that they almost never turn down a Disney request.
I truly hope that the Disney one gets granted. That is what she wants most of all, and of course that is what all 3 kids will enjoy most. I had thought that it would be only Disney, but apparently it's a week in Orlando with tickets to any parks that you'd like to go to. I have heard that they make it absolute magic. No waiting in lines for most things, a MAW volunteer guides you through the parks, and often everyone goes out of their way for the MAW families. There's also a Cinderella meet in the castle. She would love that!
I am also using this as incentive to get her moving. I told her that while I don't mind taking her chair, I don't want her to have to use it every second we're there. I am hoping to use this to build her endurance back up a bit, and her muscle tissue, too. It's amazing what we'll do when there's something to look forward to! I'm hoping that this will also help her to burn off some of the steroid weight. This week we decrease her dosage to 9MGs daily! I can't wait until we're on 6MGs- that's where they say the weight will really start to drop off. One wonderful thing about the steroids is that she finally eats!!! This is the kid that wouldn't eat much of anything, who wouldn't try new things, who ate like a bird. Now this is the girl that carries one lunch menu around in her backpack, has one next to her bed, frequently reads them in an anticipatory fashion, and talks non-stop about food! Before we tried everything to get her to gain weight, but now we may have to worry about her gaining too much! It's better than being 42lbs at age 9, right? She's earned a new nickname: Sharky! :) She's so funny! We are soooo blessed! She's had a few joint issues, but nothing major. Her Remicade is increasing at her next appointment. Hopefully that will do the trick. My only worry is that she should be seen the first Tuesday of April but it will now be the 2nd Tuesday because all of the docs will be out of the office that whole week. She usually starts to hurt the day before, so I hope this doesn't result in a flare.
I have got to get to bed! Have a wonderful Monday! :)
Friday, March 4, 2011
Our latest crazy update
Where does the time go? I feel as though I haven’t had an extra second for days now. Holy frustrating week!!! I thank God that I have a 3 day weekend coming up. I really need some down time, & some fun thrown in!
Monday started the week with Kevin going in early for his one big radiation pill. We knew that he would need his own bathroom, and that he was supposed to eat using disposable stuff. No contact. Yeah, that was the start of all of the other things that they should have told us but didn’t. He got home from the hospital as I was trying to get the kids off to school, telling me that everything we were told was just the tip of the iceberg. He couldn’t be within 6 feet of anyone. Like, they asked him if there was another bed within six feet, even with a wall separating. If so, that person in that other bed could be in danger. Doesn’t that give ya’ the warm fuzzies??? Better yet, anything that he wears or sleeps on has to be stored away after his seven days of confinement for a full week before it can even be washed. Wow. His plates, forks & cups have to be thrown away in their own bag and stored away for a week before we can put it out for the garbage truck. And he has to carry a card with him (once he’s allowed near people again) saying that he’ll be radioactive until May 21, 2011. He will set off Geiger counters. (He has a half life!) Yay, huh? Yeah, we had no idea what we were getting into. This gave us both this grim, scary feeling about it. It’s been very surreal as he put it. It’s freaky. I know it’s necessary. I know that this is a precaution; I’m trying not to get too absorbed or freaked out by it, but it’s scary. One funny that came out of it... one of our wonderful, beautiful children expressed their disappointment last night that Daddy wasn't actually literally glowing. The kids had expected him to glow like a Christmas tree. LOL!!! He slept through the first 3 days for the most part, but I think he's recovering now.
That Monday night, Make-A-Wish was supposed to be here. Our volunteer has Lupus. She’s on Methotrexate & steroids, just like Emily is. She panicked when I called her to ask her if they’d like to reschedule. We rescheduled for this upcoming Wednesday. She didn’t think she could be around the radiation. That made me worry, so I called our rheumy to make sure that I didn’t have to move Emily into a hotel for the week. I also realized that Tuesday was our Gainesville day, & I had been expecting Kevin to be able to take Zach to school. I realized that I would have to leave before I could even drop him at school, and there’s no way that I would be back in time to pick him up. I asked my parents to get him, but dropping him off here wouldn’t be a good option with no one to take care of him, so I kept Zach with us when we went to Shands. It was a longer drive than usual. Construction and the endless “are we almost there, Mom?”’s kept me busy. That boy had me so busy while we were at the hospital that I didn’t have a spare minute. Usually the time drags by. I totally expected to catch up on Facebook, but I didn't have any time at all to.
Her appointment was AWESOME!!! They seemed amazed by how well she's doing. For the first time her muscle enzymes are down! When she was admitted in October, her ALD was a 15.1. The normal range is 3.3 to 9.7. This week Em’s was a 9 -- within the normal range! I was supposed to get a copy of her labs, but we all forgot. We have more of a decrease plan for her steroids! I am so thrilled that by the end of the month she will only be on 9mgs daily, and after her next appointment it should be down to 6mgs! Her attitude has been better with the decreased steroids, as well as the prospect of Make-A-Wish. That has helped her to feel better. They said that she will be on steroids for a total of 2 years, but from next month out it should be very low, maintenance doses. They said that at about 6mgs you see the water weight start to drop off. That will help a LOT!!! Her elbow has been hurting her, and she’s had that sternum pain lately so we’re increasing her Remicade next time, but I’m comfortable with that. We discussed sun rules, since sunburn can actually cause a disease flare (which would NOT be good!), we discussed shampoos. For whatever reason, the steroids make her scalp dry, which is normal, but her hair is very oily. They say that’s weird- usually the hair dries out and starts to break off. I thought that was interesting. To make things even better, they were able to get her IV with one poke, and get a ton of blood from her on the first try! I’ve been telling her that it’s the steroids that were making it hard; I think she finally believes me!
Last time she went, she felt well enough the next day to go to school & therapy. This time… no such luck. I had panicked a little bit, trying to figure out how to make all of these things work again. Thankfully, my work is very understanding. I was able to stay home with Em yesterday. Heck, I won’t lie- I needed it, too. I wouldn’t have called out for myself, but Emily not feeling well offered me a chance to breathe & vegetate. Also, Kevin hadn’t eaten all day Tuesday while we were at the hospital because he’s afraid to touch anything. I can’t take care of him the way I’d like, but I can kind of help him out that way. Jeez, had we known how complicated this was going to be he’d have just stayed at the hospital. Or I’d have taken the week off. We truly had no idea. So that has been this week’s roller coaster. I hope you’ve enjoyed the ride. Now please get off before you start to lose it, too!!! J We’re trending up. I can feel it. We can laugh about it now :)
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