Looking back on the past few years, I have NO idea how I worked full-time. This year has been so hectic, and we have added so many new specialists. The past few months have been extremely difficult and overwhelming.
Zachary is doing better than Emily still, but we have noticed... things. For instance, now that I have "kicked the kids out of the house" (to play), he complains more about pain from behind his knees. His rheumies hadn't mentioned anything before about enthesitis-related, but with Psoriatic Arthritis it does make sense. His ankle pain comes and goes, but lately it is more knees than anything. Last month when he saw our rheumies, we were talking about a friend of his who has had a lot more disease activity. I pointed out that Zach's case is relatively mild, but the response that I got back was, "PsA is a lot harder to treat 10-15 years out. PsA kids tend to be the hardest to treat and control down the road". Great. My heart sank. Fortunately, we live day-by-day! I am not going to get caught in that trap, and I won't let the kids get caught, either. I'm just happy that he is outside playing. Emily has been playing outside too, though she doesn't last as long. I am sure that she has been depressed, but hopefully the plan we have will address that and correct it quickly.
I have always been the mom that knows what is happening. It has been very rare that I was wrong- but the past few months I have felt so out of the loop, like I'm part of a guessing game. I think we are on the verge of getting that situated, but still it has been hard on me. Being this hard on me, I can't imagine how my little people cope. We did switch back to Remicade, which definitely seems to be helping. She has gone from having mostly 7-9 on the pain scale days to 4-5.
I think I am finally figuring out Emily again. Ok, this is a lot. So, she does have kidney stones, which we feel are definitely making life more difficult. However, what makes everything tougher is that she has "Pain Amplification Syndrome". I have mentioned before that it was brought to our attention that when one isn't growing properly, their cells aren't reproducing the way they should, which makes the body hold pain in. After a friend mentioned it, I started suggesting it to different doctors. They all agree. That said, we see endocrinology on July 17th. I am truly pinning all of my hopes here. As KM said, in their case once growth hormone was added, the first month was horrible but after that everything settled down. Pain came down, growth started; the best part is that the hormone is a natural hormone, and for them it helped them to decrease some and eliminate other medicines. I would LOVE that! I am quite sure Emily would, too. I am also hoping that this will help her headaches. Neuro-opthamology didn't see any reasons for her headaches, which I now think may be a combination of hormones (pre-pubescent) and the pain amplification. We are scheduled to see nephrology the same day we see endo. The very next week Em has her first psychology appointment, and the day after that she has a procedure to blast her kidney stones out by sonic waves. They will sedate her because a tube needs to be inserted up into her kidney. They tell me they will repeat this procedure on another day because sometimes they stones are stubborn and either won't break up or will break up but won't leave the kidney. We really hope that having these little nasties gone will help her pain level go down a bit.
Another new specialist that we have added is pain management. That doctor wants her to try aquatic therapy three times a week, as well as biofeedback. She says that these will both help the amplified pain syndrome. I'm just not sure how to fit these in. We have found the aquatic therapy close by, but I still haven't spoken to a provider for biofeedback. Right now it looks as though it may be an hour south for BF, close to urology. Comparatively speaking that is not bad. Rheumatology, who handles pulminology and GI are all two & a half hours north. Pain management, endocrinology and nephrology are all 2.5 hours east. With all of these appointments, school work for the kids, and my own schooling come fall, how the heck am I going to swing aquatic therapy three times a week? I'm not sure, but I know that we will. If it will really help her, we will do it.
The pain management doctor prescribed pain patches for her. Just lidocaine, but it seemed to help her knees a bit. I love that she chose something that didn't require another pill. I am not familiar with biofeedback, but from what I understand, it involves teaching the child how to cope and deal with their situation using relaxation techniques and monitoring bodily signals like blood pressure and pulse oxygen. It sounds really cool! Our advocate has suggested waiting to see what psychology said. Our psychologist was thrilled that we found a doctor who believes in hypnosis and biofeedback. I think psychology is a little overwhelmed by our situation. We had a good laugh over that tonight. She was pretty amazed at what we are dealing with. Like I told her, one day at a time and we stay close. None of us could do it alone. We need to take this all on as a family. It would just be easier if we had a helicopter. Or two. Or a fleet.
Last thing- Camp starts Saturday for Emily! She is SOOOOO excited!!! In truth, for the first time I am glad for her to go to get her out of here, to get a break. She is so sweet and wonderful, but it seems like every day we are at some appointment. That will be one week where we are guaranteed not to have to go to an appointment for her. The down side is that we had stopped Mobic (an NSAID) a couple of weeks ago because it was starting to hurt her stomach. Since we were stopping Mobic we decided we would drop Carafate (similar to Xantac, it coats the stomach). Today we ended up back at the pediatrician's office, thinking that her antibiotic wasn't working for her sinusitis. It turns out that her sinusitis is gone, but her reflux is acting up again. The Carafate is such a large pill. I cut it in half for her but it is still so big. She really hates taking it, and we were so excited to drop basically three pills a day. Now it's back on the Carafate. I'm not sure how she handles it, but she is pretty amazing. I am trying to get us on a wheat-free, gluten-free (or very reduced) diet. It is very difficult when you have children who are as picky and stubborn as Emily. She literally won't eat if we don't give her one of her staple foods, but we are learning how to find healthier options. For instance, I could buy all kinds of fresh fruit but it will sit in my fridge and rot. I discovered an organic fruit pouch (no GMO!) that my kids have sucked down. It's actual fruit- not juice. If that is the only way I can get them to eat fruit, I will do it. Baby steps.
I will keep y'all updated as we determine new things. It has just been tough. Thank you for reading and supporting us. As always, prayers, blessings, whatever you have to offer, we will always gladly accept and appreciate fully.
Showing posts with label Hole- in -the -Wall- Camps. Show all posts
Showing posts with label Hole- in -the -Wall- Camps. Show all posts
Wednesday, July 3, 2013
Sunday, May 19, 2013
Our latest craziness (written May 18)
For anyone that follows my Facebook page, you already know that we have had a crazy week. It was actually more crazy than I even let on.
Our lives had basically been put on hold. We knew that Emily would end up at the hospital inpatient for a while, but we were not sure when. We had hoped to see a doctor, and that they would keep her, last Wednesday when we went for her meds. They didn't have a chance that day because they were very overbooked. The doctor running the clinic is only there once a week. Emily was devastated. It's a bad sign when your child actually wants to stay at the hospital. Especially when said child is the type that never complains. I spent the days following refusing to unpack, and not wanting to plan anything.
My oldest debated whether or not she had an ear infection. One day she would want to see a doctor, and the next she felt fine, only to feel badly again the next. My days were pretty booked up. I had finally gotten around to scheduling a well-check for myself. It had been 5 years!!! I didn't think it had been that long. While I was there they found a lump, which of course ended up with a mammogram for the next morning. I had school stuff to turn in, other paperwork to do, and now my own health concerns. I actually wasn't very concerned until I got there. They scanned, then they re-scanned. Then they performed an ultrasound. Thankfully, I have cysts but not cancerous. After I left that clinic that day, I ran to school, did a bunch of errands, and finally got home to find that Emily felt worse. We had already scheduled a pedi appointment, so we went there. We stumped the ARNP. She didn't know what to do, but she sent us for chest x-rays in case it was due to pneumonia going undetected. After doing the x-rays we went home. She had already been asking to sleep in our bed over several days before. One night I just pulled out the sleeper sofa. Hate that thing.
After we put the kids to bed Tuesday night, Emily decided it was time to go to the ER. Despite being mostly packed, it still took a while to get us out. To show you how much of a crazy house this can be, my son's ankle had started to hurt earlier in the day. He is over-exaggeratedly limping around the house. He tells Emily as we are packing up to take her to the ER that he is in the worst pain ever that she couldn't even imagine. Okay. We got to the ER around 2 AM. We wanted to go where her rheumy is because we felt sure that all of her problems were rheumatalogical. This time it was her joints, her muscles, and her chest/ breathing that was bothering her. They ordered an EKG, chest x-ray, and ultrasound of her liver, kidneys and bladder, and of course they did a urine test. Apparently she has kidney stones. They found traces of blood in her urine. We were unable to see nephrology over the next few days, but we were also told that the best nephrologist is at a different hospital..
Because it is what she wanted, I asked the ER if she could be admitted. They ran it by rheumatology. We have been going there since October of 2010, and we have never asked for anything out of the norm, which is likely why they agreed to it. Her labs look perfect. That's stupid. True, but stupid! I have spoken to a LOT of parents of patients, and patients as well that have said that many times when they are in a flare the labs look great. Usually the doctors don't understand that, but it is true. Because her labs looked so good her doctor thinks that her pain is caused by Pain Amplification Syndrome. Perhaps there is some truth to it, but I really, really think this is a flare- her first since we started going there. He sent in a physical therapist to do a CMAS (Childhood Myositis Assessment). I asked the PT about how her score was. She said "about 20 out of 50". Her neck muscles seem strong to me, but she can only keep her head & arms up for about ten seconds, and she was afraid to lay down because it hurt too much. I know the signs with her. The red spots had started to come back on her hands, two different types. She had the vasculitis "hot spots", and the smaller red dots that she gets with Dermatomyositis. Her elbows are pink again at the tips. Her knees are pink. This is a flare. Most importantly, not only did she have trouble holding a toothbrush and walking, she told me how badly her fatigue was affecting her. The fatigue was getting worse daily. I guess that we all disagree at some point, and I totally love and respect all of our rheumies, so we agreed to disagree. :) I know that he sees a lot of teens that have pain amplification. He seems to think that is where she is headed because of her age. I know her well, and I have (obviously) seen her go through everything. She has always taken it well. I have some theories.
She started to get the headaches when we started CellCept. She adjusted after about 2 months, and the headaches went away. When we started Orencia, the headaches came back, but only for a while. When we switched to Actemra, not only did they come back but every infusion saw a pain increase with the headaches. While one would likely assume when reading Actemra's side effects that headaches would be isolated to around the date of infusion, what if that isn't what they mean? That could solve that. We discussed going back to Remicade. Emily is thrilled. This is my bad: judging by the way she was acting towards the end of Remicade, I felt it wasn't working as well. I saw her in the bath constantly, something she usually did only when she was hurting. She is resistant to change on almost everything. I thought she didn't want to change because she didn't want to try something new. Apparently it really worked. He has warned me that it may not work as well the second time around, but we had nothing to lose by trying.
She said that she felt better almost right away after starting the Remicade. It is likely more because she had three days of IV steroids, combined with Toradol (a strong NSAID) around the clock the three days, but regardless her pain has gone from a 9 down to a 4 today at home all day.
So, right there we need to find a nephrologist, hopefully the one he wants us to see. He wants her to see pain management because of her age and how they usually deal with pain badly. He wants her to see a psychologist, because she always seems so sweet and even, and she has never gotten nasty, mean, angry, or moody. And I mentioned endocrinologist.
Thanks (again!) to KM for bringing this up. Her son had many similar problems, from lack of growth due to steroids, "something" showing on the MRI, and possible amplified pain. She explained that (and I apologize if I don't get this 100% right) when the body is not growing right, the cells do not multiply as quickly as they should. Those cells help the body to heal, thereby reducing pain. IE: if one is not growing, not only is their body out of whack but their pain can be greater because it does not have what it needs to heal. I explained this, and the fact that it allowed her son to get off of a considerable amount of medicines! If we have to add something natural to get off of something(s) unnatural, it is well worth trying. So we are looking for 4 new doctors. Apparently pediatric endocrinologists are hard to find also, or we would have seen one while we were inpatient. At least I feel like we are back on the right road, and we will hopefully be back up soon. One thing that was beautiful was having so many people check up on us while we were inpatient via phone call, text or Facebook messages. Thank you all for your love & support!
One last note- I had gotten the camp email saying that she was placed on a waiting list because she had already been to summer camp several times. She was devastated at first, but she decided that since they could call at any time, she may have a chance. The following week I received a call from camp. Due to the severity of her disease they thought that she needed to go anyway! I tell you, that was exactly what she needed. She needed something wonderful to look forward to. Thank you, Camp Boggy Creek!!! They really helped her when she needed it most. I was sobbing on the phone. LOL! Thank God!!!
*I apologize in advance for anything that doesn't make sense. I worked a long day, and it is now past my bedtime, not to mention it is a LOT to process. Back to work in the morning! Have a fantastic day! :)
Our lives had basically been put on hold. We knew that Emily would end up at the hospital inpatient for a while, but we were not sure when. We had hoped to see a doctor, and that they would keep her, last Wednesday when we went for her meds. They didn't have a chance that day because they were very overbooked. The doctor running the clinic is only there once a week. Emily was devastated. It's a bad sign when your child actually wants to stay at the hospital. Especially when said child is the type that never complains. I spent the days following refusing to unpack, and not wanting to plan anything.
My oldest debated whether or not she had an ear infection. One day she would want to see a doctor, and the next she felt fine, only to feel badly again the next. My days were pretty booked up. I had finally gotten around to scheduling a well-check for myself. It had been 5 years!!! I didn't think it had been that long. While I was there they found a lump, which of course ended up with a mammogram for the next morning. I had school stuff to turn in, other paperwork to do, and now my own health concerns. I actually wasn't very concerned until I got there. They scanned, then they re-scanned. Then they performed an ultrasound. Thankfully, I have cysts but not cancerous. After I left that clinic that day, I ran to school, did a bunch of errands, and finally got home to find that Emily felt worse. We had already scheduled a pedi appointment, so we went there. We stumped the ARNP. She didn't know what to do, but she sent us for chest x-rays in case it was due to pneumonia going undetected. After doing the x-rays we went home. She had already been asking to sleep in our bed over several days before. One night I just pulled out the sleeper sofa. Hate that thing.
After we put the kids to bed Tuesday night, Emily decided it was time to go to the ER. Despite being mostly packed, it still took a while to get us out. To show you how much of a crazy house this can be, my son's ankle had started to hurt earlier in the day. He is over-exaggeratedly limping around the house. He tells Emily as we are packing up to take her to the ER that he is in the worst pain ever that she couldn't even imagine. Okay. We got to the ER around 2 AM. We wanted to go where her rheumy is because we felt sure that all of her problems were rheumatalogical. This time it was her joints, her muscles, and her chest/ breathing that was bothering her. They ordered an EKG, chest x-ray, and ultrasound of her liver, kidneys and bladder, and of course they did a urine test. Apparently she has kidney stones. They found traces of blood in her urine. We were unable to see nephrology over the next few days, but we were also told that the best nephrologist is at a different hospital.
Because it is what she wanted, I asked the ER if she could be admitted. They ran it by rheumatology. We have been going there since October of 2010, and we have never asked for anything out of the norm, which is likely why they agreed to it. Her labs look perfect. That's stupid. True, but stupid! I have spoken to a LOT of parents of patients, and patients as well that have said that many times when they are in a flare the labs look great. Usually the doctors don't understand that, but it is true. Because her labs looked so good her doctor thinks that her pain is caused by Pain Amplification Syndrome. Perhaps there is some truth to it, but I really, really think this is a flare- her first since we started going there. He sent in a physical therapist to do a CMAS (Childhood Myositis Assessment). I asked the PT about how her score was. She said "about 20 out of 50". Her neck muscles seem strong to me, but she can only keep her head & arms up for about ten seconds, and she was afraid to lay down because it hurt too much. I know the signs with her. The red spots had started to come back on her hands, two different types. She had the vasculitis "hot spots", and the smaller red dots that she gets with Dermatomyositis. Her elbows are pink again at the tips. Her knees are pink. This is a flare. Most importantly, not only did she have trouble holding a toothbrush and walking, she told me how badly her fatigue was affecting her. The fatigue was getting worse daily. I guess that we all disagree at some point, and I totally love and respect all of our rheumies, so we agreed to disagree. :) I know that he sees a lot of teens that have pain amplification. He seems to think that is where she is headed because of her age. I know her well, and I have (obviously) seen her go through everything. She has always taken it well. I have some theories.
She started to get the headaches when we started CellCept. She adjusted after about 2 months, and the headaches went away. When we started Orencia, the headaches came back, but only for a while. When we switched to Actemra, not only did they come back but every infusion saw a pain increase with the headaches. While one would likely assume when reading Actemra's side effects that headaches would be isolated to around the date of infusion, what if that isn't what they mean? That could solve that. We discussed going back to Remicade. Emily is thrilled. This is my bad: judging by the way she was acting towards the end of Remicade, I felt it wasn't working as well. I saw her in the bath constantly, something she usually did only when she was hurting. She is resistant to change on almost everything. I thought she didn't want to change because she didn't want to try something new. Apparently it really worked.
She said that she felt better almost right away after starting the Remicade. It is likely more because she had three days of IV steroids, combined with Toradol (a strong NSAID) around the clock the three days, but regardless her pain has gone from a 9 down to a 4 today at home all day.
So, right there we need to find a nephrologist, hopefully the one he wants us to see. He wants her to see pain management because of her age and how they usually deal with pain badly. He wants her to see a psychologist, because she always seems so sweet and even, and she has never gotten nasty, mean, angry, or moody. And I mentioned endocrinologist.
Thanks (again!) to KM for bringing this up. Her son had many similar problems, from lack of growth due to steroids, "something" showing on the MRI, and possible amplified pain. She explained that (and I apologize if I don't get this 100% right) when the body is not growing right, the cells do not multiply as quickly as they should. Those cells help the body to heal, thereby reducing pain. IE: if one is not growing, not only is their body out of whack but their pain can be greater because it does not have what it needs to heal. I explained this, and the fact that it allowed her son to get off of a considerable amount of medicines! If we have to add something natural to get off of something(s) unnatural, it is well worth trying. So we are looking for 4 new doctors. Apparently pediatric endocrinologists are hard to find also, or we would have seen one while we were inpatient. At least I feel like we are back on the right road, and we will hopefully be back up soon. One thing that was beautiful was having so many people check up on us while we were inpatient via phone call, text or Facebook messages. Thank you all for your love & support!
One last note- I had gotten the camp email saying that she was placed on a waiting list because she had already been to summer camp several times. She was devastated at first, but she decided that since they could call at any time, she may have a chance. The following week I received a call from camp. Due to the severity of her disease they thought that she needed to go anyway! I tell you, that was exactly what she needed. She needed something wonderful to look forward to. Thank you, Camp Boggy Creek!!! They really helped her when she needed it most. I was sobbing on the phone. LOL! Thank God!!!
*I apologize in advance for anything that doesn't make sense. I worked a long day, and it is now past my bedtime, not to mention it is a LOT to process. Back to work in the morning! Have a fantastic day! :)
Monday, December 26, 2011
Counterbalance II- The Year in Review
I hope that everyone had a wonderful Christmas, Chanukah, or whatever you celebrate! We have been very blessed this year. My kids had probably one of the best Christmas' ever. We made some great memories with family, had some great meals, we watched a historical documentary of the birth of Christ, and just enjoyed. I hope that you & your family did, also.
For those of you that know us in "real life" or have been following the blog for the past year, you know the crazy roller coaster ride that we have been on. I know that not everyone has the same religious beliefs as me, but I truly believe that we are constantly being tested and consequently rewarded. I feel as though we are living testimony to the miracles of Jesus. Many will argue with me; while I wish that you could believe what I do, I respect your beliefs. I promise not to drone on about my love for Jesus the whole time, but I'll pray for you ;).
Last December our family was very down. It was only last October that Emily was diagnosed with the Dermatomyositis, and December brought one of several months of severe steroid swelling. The child was so swollen that her eyes couldn't open all of the way. She went from 42 pre-steroid pounds (which we rejoiced at because we couldn't get her to gain weight before) to 75lbs in about 2 months. It was shocking. This time last year, Emily was so depressed that she couldn't think of even one thing that would bring her joy. That was when I first started looking into Make A Wish. Being a systemic disease (that can attack her organs), and because so many of her medicines can have very severe side effects, she easily qualified. December also brought us a secret Santa. Despite Kevin being unemployed, we did well enough to be able to afford a decent Christmas for the kids, but then we had this huge blessing appear on our doorstep. Words couldn't express how giddy it made us. It was a bright light during a very dark time.
I think it was February that Make-A-Wish informed us that they could help Emily. This was the start of a slow change in personality for Emily. It's amazing what HOPE can do. It helped her come from deeply depressed to back to a spunky little girl. We set a date for March to meet our wish givers.
March came, and we had to post-pone the meeting with our wish givers because Kevin had to have radiation for his thyroid cancer. We had found out about it the past November (at MY doctor's appointment, without him even with me!), but he chose to put it off a couple of months because it required an iodine-free diet. He wanted to get past the holidays, but then it took months to get his thyroid levels to crash low enough to do the scans. It wasn't very funny then, but he had come home saying "I can't be within 6 feet of anyone, I have to use plastic silverware and plates and put everything aside for a week or it will raise alarms at the dump. Oh, and my half-life expires on May 21". We had originally been told all that we needed was a seperate bathroom.... It was the following week that we met Em's wish givers. They told us that they would work on her Disney wish! March was also when my mom first told me that there was "something" wrong with her, then tried to retract it because she didn't want to seek medical help.
In April we had a nice break with a Cub Scout camping trip. We needed that!!! Later in April we were told that Emily's primary wish would be granted! Oh, how exciting that was!!! I think that, in some ways, this made us worried because nothing ever goes smoothly for us. I don't know why, but there's always a crisis of some sort, so we kind of waited with baited breath. They were working on a vacation date as early as May! We couldn't believe it may be so early.
May brought Emily's Disney trip! Now, you may think, you live in Florida; why go to Disney? When faced with the ups and downs that we have been faced with, when you live too far away for a yearly pass, it just seems out of the question. Make A Wish and Give Kids the World truly made it a magical, amazingly special week that she still talks about as though it were yesterday, especially her meeting with Rapunzel. We were able to spoil the other two kids, and just try to forget all of the appointments, the problems, the finances, and just enjoy family time. And we actually had quite a bit of money left over (we had become very used to being frugal!) That made us decide to take a huge jump that we really shouldn't have, but needed to. Which led us to June & July.
In June we spontaneously put in for a scholarship from the Arthritis Foundation to go to the JA Conference in Washington DC. I wasn't going to apply this year, so I put it in late because I wanted to be considered last. After all, we had an amazing Disney trip; not everyone could say that, & also because we had gone the previous year to the conference, but only Emily & I. I found out the week that we were helping at Cub Scout camp that we won a scholarship! That meant that we could afford to drive up and have all of the family go. I didn't want it to be just Emily & I again. We were very excited! This is how we spent the rest of the MAW money. This month also brought a speeding ticket that I deserved (yes, my bad.) I was totally preoccupied thinking about the dermatologist appointment that we were heading to for Zach. His psoriasis had been beyond-our-control-persistent. The doctor gave him injections which didn't really help, and more creams. I was really starting to feel frustration at this point because it was really taking over him.
In July Em's doctor's suggested adding a new medicine to her IV infusions, and they also asked us to consider getting Emily a port to make her infusions easier. They were getting worse and worse. This brought us to the conference with a whole lot of new question to ask (and a new speeding ticket that I did NOT deserve!). All that I can say about that is there are some officers that should really be ashamed to call themselves law enforcement. The conference brought us some amazing memories. It was so cool to go and meet so many of the people that I've met on Facebook! It really felt like being with family. I'm always the shy one that doesn't know what to do around people, but this was different. We learned some great things about Rituxan that encouraged us to try it, and had the opportunity to speak to Dr. Lisa Rider, who co-wrote "the book" on Juvenile Myositis. She had her first dosage just after we got home & she noted a difference right away. We decided to go ahead with the port. While at the conference we took a jaw class because we knew nothing about jaw issues, only to find out that we would soon need that info. We detoured on the way home and spent two nights camping in the mountains. Secretly, I was hoping our house would have burnt down while we were gone so that we could go back to live in the mountains. I'd be happy living in a tent in Cades Cove. It is heaven. <3 That's where my heart lives.
One morning in August, my son walked up to me and says "Mom, my jaw is clicking & it hurts". I'm pretty sure my heart stopped. With his psoriasis being so, so bad, I had been expecting "Arthur" to rear his ugly head at some point. This led to a frantic mission, how to get him diagnosed. Doctor's often like to think that you're "just being paranoid". Let me tell you, I'm beyond paranoid. I'm in reality, & our reality is that things go wrong. However, as long as we face them head on and quickly, we can deal. It's when things drag out that they become more complicated. So, I had a lot of work to do that would certainly have been much easier to do if I had a medical degree. I really need to work on that. Somehow I almost forgot to point out that it was in August that my mother was diagnosed with colon cancer, which brought emergency surgery & a while host if new problems.
In September we were randomly chosen to have 2 tickets to a concert that I desperately wanted to go to but knew that we couldn't afford. Despite Kevin still not working, I had continued to give in faith to The JOY FM. They do a lot of good for the community, and they have been a huge blessing to me. I never thought we would get free tickets!!! Oh, I was so excited!!! I took Emily with me. She really needed a fun night out in anticipation of the port. September also brought her port placement. UGH!!! It was horrible to deal with her anxiety about it; she was so terrified, but she still wanted to do it. The procedure went fabulously, but we found as we were leaving that day that her IgG counts were down. (Immune system counts). I knew that she would be the one to have a problem, but I hoped & prayed for the best. My son came home from school with a $100 gift card for WalMart from an anonymous source the week of her surgery. <3 We had Family Camp weekend at our beloved Camp Boggy Creek this month, too. It was Rheumatic weekend, so families that weekend were all affected by arthritis in some way. One of my favorite moms happened to look at Zach's fingers and noted that they look swollen. To me, they look like Emily's- Dactyl. It's a sign of arthritis. It felt so validating to have someone else see what I saw. It got my wheels turning, and when I saw one of our rheumatologists from our group at lunch, it occurred to me that she was there as a volunteer and it couldn't hurt to ask her to look at him, right? She couldn't quite tell by the fingers, but she said even if there was no arthritis she could treat the psoriasis. She asked them to schedule him with Emily one day, but we still had to get a referral. So, I got with my pediatricians and requested a bunch of labwork in the meantime. I'm so glad I did because I had no idea that all of the tests I requested were what they wanted us to have before he was seen! So,
In October we finally were really hurting from Kevin's job loss. We had our internet & cell phones off because we just simply couldn't fit them in around other expenses. Some amazing person paid our bills. About $400 worth!!! We made a shout out that we could pay them back in the next week; Kevin had cashed in his 401K to get caught up, and we had only to wait for the check. No one came forward. God bless them!!! We desperately needed some good by then. We also expected to have Zach seen by our rheumy, but instead we spent 2 weeks between two different hospitals for a staph infection in Emily's port. We were in the hospital two & 1/2 hours away on the day of his appointment. I would have had Kevin bring him, but Kevin had just started working again!!! I knew that when the time was right, he would find the perfect job. I knew it because I had prayed that he would lose his previous job and find something that he would love. We waited patiently, faithfully. Things just fell into line, and this job does, indeed, seem perfect. We had a tumultous month, but we got through it. We had some truly amazing friend send things to keep Emily company or keep her busy. One of the nurses gave her the wrong dose of one of her meds and reacted. They thought that she had aseptic meningitis at first. Thankfully, it was just a reaction and lasted only 2 days, but that was the worst two days ever for her. It was terrible!!! She celebrated Halloween in the hospital, having some of those amazing friends send her exactly the costume that she wanted. We also had Mr. G from our elementary school call me while we were still in the hospital to ask if we needed anything done around the house. Oh boy!!! In truth, we had so much that needed to get done that I told him that I couldn't really think of anything. We really had a LOT of things that had been put on the back burner. We also had a friend send us a check because God led him to. We were able to use that to finance Christmas, which would have been pretty bitter otherwise.
In November Mr. G and one of the coaches came over to see how they could help us. I'm really not good at accepting help, but they made me realize that this was something that a whole lot of people wanted to do, and they were all pretty excited about it. I realized that sometimes by accepting help, you help other people. It's a crazy, wonderful, brilliant circle. It was so much more than "just" a little housework. I would go too long re-describing it, but check here if you missed it. When the time came, my street was taken over by vehicles from all of the volunteers that came out to help us. It was overwhelming, and beautiful. It was even more beautiful to find out how many of Emily's friends had come over and helped out! The kids all had fun (so I've been told :) and it's a wonderful way to inspire them to help. My family has all felt like a great weight has been lifted. It was truly amazing to see someone's idea come to reality in such a grande way, though I admit I was at work for most of it! Emily was home, the beginnings of a sinus infection hitting her. She's still fighting it. She's been on antibiotics since October. She won't be off of them until the middle of January. (Sigh) November also brought a solid diagnosis of Psoriatic Arthritis for Zachary. The doctor that we saw that day could feel it in his jaw. He originally said that he'd order an MRI before he felt it; then he said there's no need- it's there. He's been started on Methotrexate and Enbrel. Not something I wanted to be right about, but I've known for years that he would have it. Just knew.
And December... Our van was broken into last week. Can't forget that. It was frustrating, but it's just stuff. Otherwise, aside from the house being sick, and worrying that Emily would be in the hospital for Christmas, with her CT scan showing her sinuses totally blocked, it's been a wonderful month. (Really!!!) We've had zero time for anything. Every day off that I've had, someone has been home sick. BUT, she's home. We received a card from an anonymous source, sent to the school for us. Some wonderful, blessed stranger gave us $60. They were touched by our story in the paper. Our scout pack spoiled us. Knowing what we've been through, knowing how much Kevin helps out, yet knowing that we weren't in need!!!!!!!!, they gave us an amazing care package. Pretty much "shut up and smile". LOL!!! Do you see why the word "Counterbalance" runs through my head? I see miracles. No, not huge ones. But I can see the little ones that people don't notice. I catch little glimpses of how God works through us all. And it's beautiful.
I hope that we have better health around here for 2012, but even if it's just as crazy and stormy as this year, I'm sure that we will have plenty more rainbows and plenty of blessings to balance it all out. Happy New Year to any of you that have made it this far!!! God bless you, and thank you for all of your love, prayers & support. <3
*Edited a few time because I'm a dork and should have written all of these things down! Relying on my memory= not so good!!!
For those of you that know us in "real life" or have been following the blog for the past year, you know the crazy roller coaster ride that we have been on. I know that not everyone has the same religious beliefs as me, but I truly believe that we are constantly being tested and consequently rewarded. I feel as though we are living testimony to the miracles of Jesus. Many will argue with me; while I wish that you could believe what I do, I respect your beliefs. I promise not to drone on about my love for Jesus the whole time, but I'll pray for you ;).
Last December our family was very down. It was only last October that Emily was diagnosed with the Dermatomyositis, and December brought one of several months of severe steroid swelling. The child was so swollen that her eyes couldn't open all of the way. She went from 42 pre-steroid pounds (which we rejoiced at because we couldn't get her to gain weight before) to 75lbs in about 2 months. It was shocking. This time last year, Emily was so depressed that she couldn't think of even one thing that would bring her joy. That was when I first started looking into Make A Wish. Being a systemic disease (that can attack her organs), and because so many of her medicines can have very severe side effects, she easily qualified. December also brought us a secret Santa. Despite Kevin being unemployed, we did well enough to be able to afford a decent Christmas for the kids, but then we had this huge blessing appear on our doorstep. Words couldn't express how giddy it made us. It was a bright light during a very dark time.
I think it was February that Make-A-Wish informed us that they could help Emily. This was the start of a slow change in personality for Emily. It's amazing what HOPE can do. It helped her come from deeply depressed to back to a spunky little girl. We set a date for March to meet our wish givers.
March came, and we had to post-pone the meeting with our wish givers because Kevin had to have radiation for his thyroid cancer. We had found out about it the past November (at MY doctor's appointment, without him even with me!), but he chose to put it off a couple of months because it required an iodine-free diet. He wanted to get past the holidays, but then it took months to get his thyroid levels to crash low enough to do the scans. It wasn't very funny then, but he had come home saying "I can't be within 6 feet of anyone, I have to use plastic silverware and plates and put everything aside for a week or it will raise alarms at the dump. Oh, and my half-life expires on May 21". We had originally been told all that we needed was a seperate bathroom.... It was the following week that we met Em's wish givers. They told us that they would work on her Disney wish! March was also when my mom first told me that there was "something" wrong with her, then tried to retract it because she didn't want to seek medical help.
In April we had a nice break with a Cub Scout camping trip. We needed that!!! Later in April we were told that Emily's primary wish would be granted! Oh, how exciting that was!!! I think that, in some ways, this made us worried because nothing ever goes smoothly for us. I don't know why, but there's always a crisis of some sort, so we kind of waited with baited breath. They were working on a vacation date as early as May! We couldn't believe it may be so early.
May brought Emily's Disney trip! Now, you may think, you live in Florida; why go to Disney? When faced with the ups and downs that we have been faced with, when you live too far away for a yearly pass, it just seems out of the question. Make A Wish and Give Kids the World truly made it a magical, amazingly special week that she still talks about as though it were yesterday, especially her meeting with Rapunzel. We were able to spoil the other two kids, and just try to forget all of the appointments, the problems, the finances, and just enjoy family time. And we actually had quite a bit of money left over (we had become very used to being frugal!) That made us decide to take a huge jump that we really shouldn't have, but needed to. Which led us to June & July.
In June we spontaneously put in for a scholarship from the Arthritis Foundation to go to the JA Conference in Washington DC. I wasn't going to apply this year, so I put it in late because I wanted to be considered last. After all, we had an amazing Disney trip; not everyone could say that, & also because we had gone the previous year to the conference, but only Emily & I. I found out the week that we were helping at Cub Scout camp that we won a scholarship! That meant that we could afford to drive up and have all of the family go. I didn't want it to be just Emily & I again. We were very excited! This is how we spent the rest of the MAW money. This month also brought a speeding ticket that I deserved (yes, my bad.) I was totally preoccupied thinking about the dermatologist appointment that we were heading to for Zach. His psoriasis had been beyond-our-control-persistent. The doctor gave him injections which didn't really help, and more creams. I was really starting to feel frustration at this point because it was really taking over him.
In July Em's doctor's suggested adding a new medicine to her IV infusions, and they also asked us to consider getting Emily a port to make her infusions easier. They were getting worse and worse. This brought us to the conference with a whole lot of new question to ask (and a new speeding ticket that I did NOT deserve!). All that I can say about that is there are some officers that should really be ashamed to call themselves law enforcement. The conference brought us some amazing memories. It was so cool to go and meet so many of the people that I've met on Facebook! It really felt like being with family. I'm always the shy one that doesn't know what to do around people, but this was different. We learned some great things about Rituxan that encouraged us to try it, and had the opportunity to speak to Dr. Lisa Rider, who co-wrote "the book" on Juvenile Myositis. She had her first dosage just after we got home & she noted a difference right away. We decided to go ahead with the port. While at the conference we took a jaw class because we knew nothing about jaw issues, only to find out that we would soon need that info. We detoured on the way home and spent two nights camping in the mountains. Secretly, I was hoping our house would have burnt down while we were gone so that we could go back to live in the mountains. I'd be happy living in a tent in Cades Cove. It is heaven. <3 That's where my heart lives.
One morning in August, my son walked up to me and says "Mom, my jaw is clicking & it hurts". I'm pretty sure my heart stopped. With his psoriasis being so, so bad, I had been expecting "Arthur" to rear his ugly head at some point. This led to a frantic mission, how to get him diagnosed. Doctor's often like to think that you're "just being paranoid". Let me tell you, I'm beyond paranoid. I'm in reality, & our reality is that things go wrong. However, as long as we face them head on and quickly, we can deal. It's when things drag out that they become more complicated. So, I had a lot of work to do that would certainly have been much easier to do if I had a medical degree. I really need to work on that. Somehow I almost forgot to point out that it was in August that my mother was diagnosed with colon cancer, which brought emergency surgery & a while host if new problems.
In September we were randomly chosen to have 2 tickets to a concert that I desperately wanted to go to but knew that we couldn't afford. Despite Kevin still not working, I had continued to give in faith to The JOY FM. They do a lot of good for the community, and they have been a huge blessing to me. I never thought we would get free tickets!!! Oh, I was so excited!!! I took Emily with me. She really needed a fun night out in anticipation of the port. September also brought her port placement. UGH!!! It was horrible to deal with her anxiety about it; she was so terrified, but she still wanted to do it. The procedure went fabulously, but we found as we were leaving that day that her IgG counts were down. (Immune system counts). I knew that she would be the one to have a problem, but I hoped & prayed for the best. My son came home from school with a $100 gift card for WalMart from an anonymous source the week of her surgery. <3 We had Family Camp weekend at our beloved Camp Boggy Creek this month, too. It was Rheumatic weekend, so families that weekend were all affected by arthritis in some way. One of my favorite moms happened to look at Zach's fingers and noted that they look swollen. To me, they look like Emily's- Dactyl. It's a sign of arthritis. It felt so validating to have someone else see what I saw. It got my wheels turning, and when I saw one of our rheumatologists from our group at lunch, it occurred to me that she was there as a volunteer and it couldn't hurt to ask her to look at him, right? She couldn't quite tell by the fingers, but she said even if there was no arthritis she could treat the psoriasis. She asked them to schedule him with Emily one day, but we still had to get a referral. So, I got with my pediatricians and requested a bunch of labwork in the meantime. I'm so glad I did because I had no idea that all of the tests I requested were what they wanted us to have before he was seen! So,
In October we finally were really hurting from Kevin's job loss. We had our internet & cell phones off because we just simply couldn't fit them in around other expenses. Some amazing person paid our bills. About $400 worth!!! We made a shout out that we could pay them back in the next week; Kevin had cashed in his 401K to get caught up, and we had only to wait for the check. No one came forward. God bless them!!! We desperately needed some good by then. We also expected to have Zach seen by our rheumy, but instead we spent 2 weeks between two different hospitals for a staph infection in Emily's port. We were in the hospital two & 1/2 hours away on the day of his appointment. I would have had Kevin bring him, but Kevin had just started working again!!! I knew that when the time was right, he would find the perfect job. I knew it because I had prayed that he would lose his previous job and find something that he would love. We waited patiently, faithfully. Things just fell into line, and this job does, indeed, seem perfect. We had a tumultous month, but we got through it. We had some truly amazing friend send things to keep Emily company or keep her busy. One of the nurses gave her the wrong dose of one of her meds and reacted. They thought that she had aseptic meningitis at first. Thankfully, it was just a reaction and lasted only 2 days, but that was the worst two days ever for her. It was terrible!!! She celebrated Halloween in the hospital, having some of those amazing friends send her exactly the costume that she wanted. We also had Mr. G from our elementary school call me while we were still in the hospital to ask if we needed anything done around the house. Oh boy!!! In truth, we had so much that needed to get done that I told him that I couldn't really think of anything. We really had a LOT of things that had been put on the back burner. We also had a friend send us a check because God led him to. We were able to use that to finance Christmas, which would have been pretty bitter otherwise.
In November Mr. G and one of the coaches came over to see how they could help us. I'm really not good at accepting help, but they made me realize that this was something that a whole lot of people wanted to do, and they were all pretty excited about it. I realized that sometimes by accepting help, you help other people. It's a crazy, wonderful, brilliant circle. It was so much more than "just" a little housework. I would go too long re-describing it, but check here if you missed it. When the time came, my street was taken over by vehicles from all of the volunteers that came out to help us. It was overwhelming, and beautiful. It was even more beautiful to find out how many of Emily's friends had come over and helped out! The kids all had fun (so I've been told :) and it's a wonderful way to inspire them to help. My family has all felt like a great weight has been lifted. It was truly amazing to see someone's idea come to reality in such a grande way, though I admit I was at work for most of it! Emily was home, the beginnings of a sinus infection hitting her. She's still fighting it. She's been on antibiotics since October. She won't be off of them until the middle of January. (Sigh) November also brought a solid diagnosis of Psoriatic Arthritis for Zachary. The doctor that we saw that day could feel it in his jaw. He originally said that he'd order an MRI before he felt it; then he said there's no need- it's there. He's been started on Methotrexate and Enbrel. Not something I wanted to be right about, but I've known for years that he would have it. Just knew.
And December... Our van was broken into last week. Can't forget that. It was frustrating, but it's just stuff. Otherwise, aside from the house being sick, and worrying that Emily would be in the hospital for Christmas, with her CT scan showing her sinuses totally blocked, it's been a wonderful month. (Really!!!) We've had zero time for anything. Every day off that I've had, someone has been home sick. BUT, she's home. We received a card from an anonymous source, sent to the school for us. Some wonderful, blessed stranger gave us $60. They were touched by our story in the paper. Our scout pack spoiled us. Knowing what we've been through, knowing how much Kevin helps out, yet knowing that we weren't in need!!!!!!!!, they gave us an amazing care package. Pretty much "shut up and smile". LOL!!! Do you see why the word "Counterbalance" runs through my head? I see miracles. No, not huge ones. But I can see the little ones that people don't notice. I catch little glimpses of how God works through us all. And it's beautiful.
I hope that we have better health around here for 2012, but even if it's just as crazy and stormy as this year, I'm sure that we will have plenty more rainbows and plenty of blessings to balance it all out. Happy New Year to any of you that have made it this far!!! God bless you, and thank you for all of your love, prayers & support. <3
*Edited a few time because I'm a dork and should have written all of these things down! Relying on my memory= not so good!!!
Wednesday, October 5, 2011
Family Camp Was Amazing!
This past weekend we went to our local "Hole- In- The- Wall- Camp". These are the camps that Paul Newman's product lines help to support. These camps are amazing in so many ways. To start, they are tailored to sick children. These people realize that it's not fair or fun to live in pain every day, to have to spend so much time at the hospital or doctor's offices, and have to go through frequent testing. They also realize that many of these kids are on so many meds that they couldn't go to a "regular" camp. These types of camps are filled with counselors that volunteer- because they want to. They are medical students, nurses, doctors. They also have a disease-specific doctor on hand because you just never know what may happen. It's a safe haven, filled with love. To have a family weekend is amazing! Emily had gone to this camp twice for a week each time. She was so sad to leave it! She looked forward to this opportunity to share it with us.
It's also a wonderful experience to get together with other people that are going through similar situations. You really feel a strong sense of community. They want the parents to do their own thing to recharge. Many of us are happiest just watching our kids have fun :) I had a lovely time following my kids around, watching them excitedly make cars and animals in wood shop, checking out the boats, doing crafts, participating in the talent show, etc. It was really cool watching Emily do all of the chants and the little cheers they had. Like she totally belonged. That was cool. Another "Mom Moment" happened during the opening campfire. One of the coolest ladies EVER, who just happens to be named Dorcas, was talking about how everyone was going to get a set of beads, but she was giving out 3 to special people. (Mind you, I'm going deaf; I don't hear nearly as much as I want to , and since I couldn't rewind the moment, I totally missed it.) For whatever reason, Emily was one of those 3 special people. I didn't hear the why, and I'm not even sure how she knew exactly where Emily was, but she did. I suppose she could have remembered her from last summer, but Em looks so different. Any which way, it was truly amazing, and really touching. Em also really enjoyed being in a bed right next to my bed :) Sleeping only 3 feet away from Mom makes her feel safe. <3 She did have a food meltdown on the first night, but otherwise she had an amazing weekend.
The family "Pals" are volunteers that follow the kids around. They specialize in making the kids feel loved and happy. They bond with the family, but especially the kids. They have them "serve" the family, hold open doors- totally spoil the family. We had 3 pals. Our pal, Brittany, has Lupus. She told us that she refused to take her Prednisone, which caused kidney failure. She spent half of her time with us, and half in the arts and crafts area. She has her IV port in her leg, and it keeps slipping so she has to spend most of her time in her wheelchair. Our other pals were pushing her around. I think it was a blessing having her. She could understand better than the other two how Emily felt. She was a camp kid, volunteering because she loved the camp and the way it made her feel. Our pal Jake was in school working on dual masters in business & sports. He & Zach got along very well :) Our last pal was Stephanie. She was my favorite :) She was only 21... close to Gir's age. She's a medical student, working her way through college in a lab that's doing research testing for Lupus. I was so excited to hear that!!! She was down to Earth like a good teenager, able to fit in with the kids like she was 16. Not only did she and Gir get along well, but she & Emily did, too. Em schooled her in rheumatology. I think they impressed each other. It was lovely to meet them all, and a wonderful treat getting to know them. Many special people make up this camp!
My last bit for the evening... Well, we're finally on the way to getting my son "figured out". I had noticed a while ago that his hands look puffy. While at camp, another mom said the same thing. (Thank you again for saying it!!! I never would have thought to jump on it otherwise.) After talking to Kevin about it, sitting at the dinner table, I look over and see one of our rheumatologists speaking to someone. So I thought, hmmm, she's here in a professional capacity, volunteering her time. It couldn't hurt to ask her to look him over, could it? She was totally cool about it. She said that he's hypermobile, to start with. And she said that, judging by his reaction, she believes he has arthritis in his finger. She didn't check his jaw, but combined with the finger, the severity of the psoriasis, the nail involvement, the heel pain, the clicking of the jaw, etc, she suggested we make a new patient appointment for him. I had his blood drawn yesterday for labwork. I had requested the Rheumatoid Factor panel, the inflammatory panel, the HLA-B's, (Human Leukocyte Antigen's are often positive with the spondylarthropy family), and I added an ANA. (Is that wrong?) Hopefully those will be back in the next few days. Those should tell us if there's anything going on, though not necessarily. I requested the lab send a copy to the rheumy. That should help to get things started. I really, really hope we're wrong. I really want to be. We shall see. We're just taking it all one day at a time.
It's also a wonderful experience to get together with other people that are going through similar situations. You really feel a strong sense of community. They want the parents to do their own thing to recharge. Many of us are happiest just watching our kids have fun :) I had a lovely time following my kids around, watching them excitedly make cars and animals in wood shop, checking out the boats, doing crafts, participating in the talent show, etc. It was really cool watching Emily do all of the chants and the little cheers they had. Like she totally belonged. That was cool. Another "Mom Moment" happened during the opening campfire. One of the coolest ladies EVER, who just happens to be named Dorcas, was talking about how everyone was going to get a set of beads, but she was giving out 3 to special people. (Mind you, I'm going deaf; I don't hear nearly as much as I want to , and since I couldn't rewind the moment, I totally missed it.) For whatever reason, Emily was one of those 3 special people. I didn't hear the why, and I'm not even sure how she knew exactly where Emily was, but she did. I suppose she could have remembered her from last summer, but Em looks so different. Any which way, it was truly amazing, and really touching. Em also really enjoyed being in a bed right next to my bed :) Sleeping only 3 feet away from Mom makes her feel safe. <3 She did have a food meltdown on the first night, but otherwise she had an amazing weekend.
The family "Pals" are volunteers that follow the kids around. They specialize in making the kids feel loved and happy. They bond with the family, but especially the kids. They have them "serve" the family, hold open doors- totally spoil the family. We had 3 pals. Our pal, Brittany, has Lupus. She told us that she refused to take her Prednisone, which caused kidney failure. She spent half of her time with us, and half in the arts and crafts area. She has her IV port in her leg, and it keeps slipping so she has to spend most of her time in her wheelchair. Our other pals were pushing her around. I think it was a blessing having her. She could understand better than the other two how Emily felt. She was a camp kid, volunteering because she loved the camp and the way it made her feel. Our pal Jake was in school working on dual masters in business & sports. He & Zach got along very well :) Our last pal was Stephanie. She was my favorite :) She was only 21... close to Gir's age. She's a medical student, working her way through college in a lab that's doing research testing for Lupus. I was so excited to hear that!!! She was down to Earth like a good teenager, able to fit in with the kids like she was 16. Not only did she and Gir get along well, but she & Emily did, too. Em schooled her in rheumatology. I think they impressed each other. It was lovely to meet them all, and a wonderful treat getting to know them. Many special people make up this camp!
My last bit for the evening... Well, we're finally on the way to getting my son "figured out". I had noticed a while ago that his hands look puffy. While at camp, another mom said the same thing. (Thank you again for saying it!!! I never would have thought to jump on it otherwise.) After talking to Kevin about it, sitting at the dinner table, I look over and see one of our rheumatologists speaking to someone. So I thought, hmmm, she's here in a professional capacity, volunteering her time. It couldn't hurt to ask her to look him over, could it? She was totally cool about it. She said that he's hypermobile, to start with. And she said that, judging by his reaction, she believes he has arthritis in his finger. She didn't check his jaw, but combined with the finger, the severity of the psoriasis, the nail involvement, the heel pain, the clicking of the jaw, etc, she suggested we make a new patient appointment for him. I had his blood drawn yesterday for labwork. I had requested the Rheumatoid Factor panel, the inflammatory panel, the HLA-B's, (Human Leukocyte Antigen's are often positive with the spondylarthropy family), and I added an ANA. (Is that wrong?) Hopefully those will be back in the next few days. Those should tell us if there's anything going on, though not necessarily. I requested the lab send a copy to the rheumy. That should help to get things started. I really, really hope we're wrong. I really want to be. We shall see. We're just taking it all one day at a time.
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