Oh, for once I can say that it's wonderful to not be writing much! I write much more when things are going wrong. Lately, everyone is doing pretty well!
I truly feel that all of the work that we put into getting Emily on growth hormones has helped tremendously. She has been so much better. In fact, we are supposed to try stretching her Remicade and IViG infusions out from every four weeks to every five weeks! I am so excited about that!!! We have waited a couple of months to make sure she was doing as well as I thought she was, and I feel pretty confident now. I got her a gym membership. Now all I have to do is drag her there with me. LOL!
Zach is doing well. His asthma started flaring, but at least we have everything we need for that. He had one month where his joints were red and swollen, but they have evened back out. His rheumy (who is leaving us!) mentioned that we would likely be asked by the other members of the group to decrease his meds when the warmer weather comes. In sunny Florida, we also have very high humidity levels. They can be overwhelming for some things, but it's good for psoriasis, asthma, and Sjogren's! Hopefully around March we will drop his Methotrexate injections, and then consider dropping his Enbrel to once a week instead of twice a week.
My oldest and my hubby are doing well. :) I've been plodding along. I had quite a flare for about 2 months, but I think I am past it now. I've been hanging at the gym because it makes me feel better. I just finished one of my easier semesters at school, but next semester is going to be hell. I will likely not write at all through the next semester. Things are good, though. Eyes are good, lungs are good (except for the asthma), and the kids are happy. We just finished our homeschool year, so the kids are on a short break until the new year. Life is good!
Lastly, Emily turned 13!!! She had a nice birthday. We celebrated over 2 days; one day was quietly spent at home, and another day we went to an amusement park for the day. We all had a great time! So, now to change the blog name. Shall I change it to "My 13 Year Old is an Old Lady Who Turns Purple" or "My Teen is an Old Lady..."? Decisions, decisions. It may be hard in a google search if I change it to teen, but then I won't have to change it again for another seven years. Thoughts? Let me know! :) I hope y'all are doing well!
Showing posts with label juvenile psoriatic arthritis. Show all posts
Showing posts with label juvenile psoriatic arthritis. Show all posts
Monday, December 15, 2014
Thursday, November 14, 2013
Lots to be thankful for
Sometimes it hits me how surreal our life is. Sometimes I realize how not-normal our "normal" is. Sometimes I feel worried, scared or nervous about how our kids are doing, but then we walk through this cancer ward and it really puts things into perspective. We see mothers crying in the hallway because their children are given a terrible prognosis. Children that look more ill than any old person that I have seen are not even allowed to leave their rooms for fear of germs. These are the days where I really embrace all that we really have. Our home life is better than probably 80-90% of families out there. I love being home with the kids more; I rarely have to raise my voice. We all feel happy when Ash comes home from school or Kevin comes home from work. That is how it should be, but I suspect it is rare for many other families out there. I don't just love my family- I like them, too, and we enjoy each other.
Today has been a really good day at the hospital. I feel like we've gotten some answers. While Zach's ankles are still not great, and he has a bad spot in his back, he's doing pretty well overall. We were talking and thinking back to when one of the doctors here first looked him over at camp. He was a mess. He had huge red sores (plaque psoriasis) all over him. It was horrible. Enbrel has given him a chance at a normal life in multiple ways. Thankfully, 2 years down the line it is still helping him. We got him a prescription for physical therapy because I'm not sure how to help his pain when he is walking a lot or playing hard. I have some ideas, but I know that his issues are different from mine and what works for me may not for him. I'm hoping that will help him to gain some endurance, too. Otherwise he is doing very well!
We established that Emily's Pulminary Function Test came back with no problems, so that is great. I thought it would be okay, but one can never be sure. I spoke to the doctor at length about how her pain levels don't seem to jive. She still hurts a LOT, and it keeps her from wanting to do much of anything. We agree that some of it is her age with the hormones starting, some of it is muscle memory, and the adrenal insufficiency isn't helping. We also discussed the growth problems and how growth hormone may be the key to calming her pain down. To put this into perspective, I am 4', 9.5" tall. I have been this height since I was 10. Emily will be 12 on December 6. She is 4', 1.5" tall. I don't want her to be doomed to shortness, but I also believe that those cells not regenerating are storing pain in the nerve endings. If her joints are good, and her muscle strength is good, then it makes sense. Some of it is that she needs to stretch more. We have discussed this often; I know that she is trying, but I think we need to switch it up a bit. Her knees were bright red for months. Today they actually looked good, but they still hurt. I've been telling her that I think her IT bands are tight. They just need to be stretched and she'll feel better. It's so hard to get her to want to move. In any case, I will take this to our previous appointments. I think that the hydrocortisone is helping quite a bit, so hopefully she will start to feel even better from that soon. It's a slippery slope but I have hope that soon this will all be easier for her.
One good thing is that this doctor really sees why we need endocrinology. It makes me feel less like a paranoid, over-reactive mom. I really try hard not to be like that. I try to approach things with as much distance as I can, and from a clinical approach. It can be hard, but I put a lot of thought into everything before we make decisions. Em & I talk about it, and then Kevin & I talk about it.
As far as I know, tomorrow should just be a fast release home, but we shall see. Sometimes things sneak up at the last second. I still have to give our doctors here a copy of her 24 hour urine test that nephrology ordered. It's all over the place. Almost every section is flagged. We see nephrology and pain management next week, and we are awaiting an appointment with endocrinology closer to home. The endo that we saw once is leaving the hospital, and since it was two-three hours away we wanted to find someone close. I will let y'all know how those appointments go. I am praying endo will see her very soon!!!
*Friday note: Dropping to 0.3mls of steroids!!! She has been consistently on steroids with no break since October 2010. Again, she started at 42mgs, which was about 7mls twice a day. UGH!!!!! She has come a long way, but finally there is an end in sight! WOOT!!! This is exciting!
Today has been a really good day at the hospital. I feel like we've gotten some answers. While Zach's ankles are still not great, and he has a bad spot in his back, he's doing pretty well overall. We were talking and thinking back to when one of the doctors here first looked him over at camp. He was a mess. He had huge red sores (plaque psoriasis) all over him. It was horrible. Enbrel has given him a chance at a normal life in multiple ways. Thankfully, 2 years down the line it is still helping him. We got him a prescription for physical therapy because I'm not sure how to help his pain when he is walking a lot or playing hard. I have some ideas, but I know that his issues are different from mine and what works for me may not for him. I'm hoping that will help him to gain some endurance, too. Otherwise he is doing very well!
We established that Emily's Pulminary Function Test came back with no problems, so that is great. I thought it would be okay, but one can never be sure. I spoke to the doctor at length about how her pain levels don't seem to jive. She still hurts a LOT, and it keeps her from wanting to do much of anything. We agree that some of it is her age with the hormones starting, some of it is muscle memory, and the adrenal insufficiency isn't helping. We also discussed the growth problems and how growth hormone may be the key to calming her pain down. To put this into perspective, I am 4', 9.5" tall. I have been this height since I was 10. Emily will be 12 on December 6. She is 4', 1.5" tall. I don't want her to be doomed to shortness, but I also believe that those cells not regenerating are storing pain in the nerve endings. If her joints are good, and her muscle strength is good, then it makes sense. Some of it is that she needs to stretch more. We have discussed this often; I know that she is trying, but I think we need to switch it up a bit. Her knees were bright red for months. Today they actually looked good, but they still hurt. I've been telling her that I think her IT bands are tight. They just need to be stretched and she'll feel better. It's so hard to get her to want to move. In any case, I will take this to our previous appointments. I think that the hydrocortisone is helping quite a bit, so hopefully she will start to feel even better from that soon. It's a slippery slope but I have hope that soon this will all be easier for her.
One good thing is that this doctor really sees why we need endocrinology. It makes me feel less like a paranoid, over-reactive mom. I really try hard not to be like that. I try to approach things with as much distance as I can, and from a clinical approach. It can be hard, but I put a lot of thought into everything before we make decisions. Em & I talk about it, and then Kevin & I talk about it.
As far as I know, tomorrow should just be a fast release home, but we shall see. Sometimes things sneak up at the last second. I still have to give our doctors here a copy of her 24 hour urine test that nephrology ordered. It's all over the place. Almost every section is flagged. We see nephrology and pain management next week, and we are awaiting an appointment with endocrinology closer to home. The endo that we saw once is leaving the hospital, and since it was two-three hours away we wanted to find someone close. I will let y'all know how those appointments go. I am praying endo will see her very soon!!!
*Friday note: Dropping to 0.3mls of steroids!!! She has been consistently on steroids with no break since October 2010. Again, she started at 42mgs, which was about 7mls twice a day. UGH!!!!! She has come a long way, but finally there is an end in sight! WOOT!!! This is exciting!
Wednesday, July 3, 2013
Anyone have a cheap helicopter for sale?
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.
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.
Wednesday, January 25, 2012
ENT and Enbrel!
Ok, so just so everyone can see the crazy, up/down days that we have, I will post a breakdown of the day. This is why we are so used to dealing with stress.
8 A.M.- The kids don't want to get up (and neither do I!) but we get up & ready to go.
9:30 A.M.- We leave and take Zachary to school.
10:20 A.M.- We arrive at the ENT. We wait for about an hour, which is fine because we were so early.
11:20 A.M.- We get set up with the nurse. Being a mom now accustomed to the things that doctors need I have a typewritten list of meds that Emily is currently on, a print out of all prescriptions taken since the start of the infection with the antibiotics highlighted in yellow, along with CT scans and the radiology reports.
11:30 A.M.- The doc comes in with the scans. He starts showing us how the sinuses should look and how Emily's are not performing where they should be. The Ethmoid sinus looks good from a frontal view but not so much as you go farther back. He throws out two ideas. One is that we can do the culture that our pedi requested under anesthesia to find out which antibiotics will work best against this. The second option is that we can do exactly the same thing, plus add on another ten minutes to scrape the junk out of the inner sinuses. That is the best option to me. If that stuff has been hanging out for God knows how long, it may not come out on its own, and then we'd have to get the scraping done anyway.
Noon- We're talking to a nurse, in hopes of setting up the procedure, but with all of Emily's medicines and such, she doesn't want to do it without consulting our rheumy group. They also want to hold off on prescribing a new antibiotic until they talk to our rheumy's, which leaves me a little nervous.
12:30 P.M.- A nice quiet lunch
1 P.M.- A quick visit to the park! Not that she runs around, but it's nice to go be closer to nature.
2:30 P.M.- We head to my parents house for a visit. During said visit my mom again discusses how more of her colon is blocked and she's afraid that they won't be able to do the 2nd colonoscopy. Also, my father feels tired suddenly so he goes to take his blood pressure. It turns out to be 80/37. Ouch. Mom gets him some potato chips to bring his pressure up and he's good. I take some time to order a bunch of prescription refills.
4:30 P.M.- We head to the school to get Zachary. He tells me how his throat has been hurting all day. Once home I pull out my scope (don't hate) and look down his throat. Bright red. Great.
5 P.M.- While I really want to nap, I realize that I still need to call the pharmacy about Zach's Enbrel. It had appeared in my history, then disappeared a day later. It had also showed that our pay portion was $2100, so I was a lot panicked. I had called a month ago to give them our Enbrel Support info, and I had emailed it as well.It turns out that they LOST that info. I was absolutely thrilled to find out that his Enbrel will be FREE!!! Best. News. Of. The. Day. True story.
5:30 P.M.- I decide to see if my school's website could tell me why I haven't seen any more info about my financial aid. I had electronically signed the paperwork, verified everything and returned it all. I see NO SIGN of that. I once had an amount that I was supposed to be allowed and now I see nothing indicating that I was ever approved. Hmmm. I make a mental note to call on Tuesday when my son vomits. He hadn't told me that his stomach hurt, just like he didn't tell Daddy that his throat hurt. Now I'm really in a panic. Need to take yet another day off of work, make another doctor appointment. I have Omnicef at home, but with him starting Enbrel and needing his Methotrexate on Friday, I really can't take chances. So, I call in to work for tomorrow.
7 P.M.- I realize that I need to scan a bunch of documents relating to their healthcare and send it to the school. I email both kids teacher's.
See the up & down pattern? Welcome to a typical day in my life. And I have it easy compared to the kids. They still have to go to school, pretend that they are normal kids, do their normal work, then have their meds, their shots, the infusions and the constant doctor appointments and tests. Thank you Lord for making children resiliant!!!
8 A.M.- The kids don't want to get up (and neither do I!) but we get up & ready to go.
9:30 A.M.- We leave and take Zachary to school.
10:20 A.M.- We arrive at the ENT. We wait for about an hour, which is fine because we were so early.
11:20 A.M.- We get set up with the nurse. Being a mom now accustomed to the things that doctors need I have a typewritten list of meds that Emily is currently on, a print out of all prescriptions taken since the start of the infection with the antibiotics highlighted in yellow, along with CT scans and the radiology reports.
11:30 A.M.- The doc comes in with the scans. He starts showing us how the sinuses should look and how Emily's are not performing where they should be. The Ethmoid sinus looks good from a frontal view but not so much as you go farther back. He throws out two ideas. One is that we can do the culture that our pedi requested under anesthesia to find out which antibiotics will work best against this. The second option is that we can do exactly the same thing, plus add on another ten minutes to scrape the junk out of the inner sinuses. That is the best option to me. If that stuff has been hanging out for God knows how long, it may not come out on its own, and then we'd have to get the scraping done anyway.
Noon- We're talking to a nurse, in hopes of setting up the procedure, but with all of Emily's medicines and such, she doesn't want to do it without consulting our rheumy group. They also want to hold off on prescribing a new antibiotic until they talk to our rheumy's, which leaves me a little nervous.
12:30 P.M.- A nice quiet lunch
1 P.M.- A quick visit to the park! Not that she runs around, but it's nice to go be closer to nature.
2:30 P.M.- We head to my parents house for a visit. During said visit my mom again discusses how more of her colon is blocked and she's afraid that they won't be able to do the 2nd colonoscopy. Also, my father feels tired suddenly so he goes to take his blood pressure. It turns out to be 80/37. Ouch. Mom gets him some potato chips to bring his pressure up and he's good. I take some time to order a bunch of prescription refills.
4:30 P.M.- We head to the school to get Zachary. He tells me how his throat has been hurting all day. Once home I pull out my scope (don't hate) and look down his throat. Bright red. Great.
5 P.M.- While I really want to nap, I realize that I still need to call the pharmacy about Zach's Enbrel. It had appeared in my history, then disappeared a day later. It had also showed that our pay portion was $2100, so I was a lot panicked. I had called a month ago to give them our Enbrel Support info, and I had emailed it as well.It turns out that they LOST that info. I was absolutely thrilled to find out that his Enbrel will be FREE!!! Best. News. Of. The. Day. True story.
5:30 P.M.- I decide to see if my school's website could tell me why I haven't seen any more info about my financial aid. I had electronically signed the paperwork, verified everything and returned it all. I see NO SIGN of that. I once had an amount that I was supposed to be allowed and now I see nothing indicating that I was ever approved. Hmmm. I make a mental note to call on Tuesday when my son vomits. He hadn't told me that his stomach hurt, just like he didn't tell Daddy that his throat hurt. Now I'm really in a panic. Need to take yet another day off of work, make another doctor appointment. I have Omnicef at home, but with him starting Enbrel and needing his Methotrexate on Friday, I really can't take chances. So, I call in to work for tomorrow.
7 P.M.- I realize that I need to scan a bunch of documents relating to their healthcare and send it to the school. I email both kids teacher's.
See the up & down pattern? Welcome to a typical day in my life. And I have it easy compared to the kids. They still have to go to school, pretend that they are normal kids, do their normal work, then have their meds, their shots, the infusions and the constant doctor appointments and tests. Thank you Lord for making children resiliant!!!
Monday, December 12, 2011
Busy day today
We had so much planned for the day that I ended up keeping my son out of
school today. We never could have done it all if I had to go pick him
up in the middle of the day. It could have been worse; Emily's sinus infection came back. Saturday morning she awoke with a stuffy nose and a cough again. I didn't see her until later that night because I was at work. When I got off of work they were already at a meeting place for the parade they were all going to be in with our Cub Scouts. It wasn't until after the parade that I found out she was sick. Sunday morning we were supposed to celebrate her birthday at Busch Gardens, but she had a fever & the red, watery eyes. Her last day of antibiotics was December 7th, but she had her immune- suppressing infusion medicines on December 5th. I should have known. I had a call in to our pediatrician, hoping that she would just prescribe antibiotics and not want to see her back until next week. Well..... almost. She did prescribe a different antibiotic and called it into our pharmacy yesterday, but she asked to see her back on either Wednesday or Friday. Sooo.....
We had been waiting for months to get Emily's opthamologist appointment. She is supposed to be seen every 6 months, but her doctor doesn't schedule out that far, and so we end up going a month or two over every time. She has been worried about this appointment. I think that her paranoia fed her. She knows that she can get arthritis in her eyes; she has some friends with Uveitis. She also is one of the few kids in her class that does not need glasses. She sits in the back of the room, apparently back far enough that she's been having a harder time seeing the board. She was sure that she was going to need glasses. Nope! Perfect, clear, cell-free eyes! Her pressures look good, and she's 20/20! Thank you, Lord! I made Zach's appointment for March while we were there. Hopefully his eyes will also be clear.
From there we had to run up to a Health Department. We need to have a TB test for Zachary before he will be allowed to start Enbrel. Insurance won't even consider it without a TB test. Of course, our rheumy had mentioned this while we were in the hospital, but I was rushing to get back to Emily and it simply slipped my mind. I guess I got spoiled, and used to the doctor's arranging these things. I forget that, as awesome as this new doctor is, he is new to the hospital, and not quite used to all of their policies and procedures. So, it wasn't until four days later that I woke up at 3 A.M. realizing "oh, crap! We need to get his TB test done!" I called his pediatrician to set up an appointment only to find that they no longer do it. I called a local walk-in clinic run by a hospital. They advertise that they do it. They put me on hold to speak to a nurse, but after holding for about 5 minutes I hung up. We went their later that night, but they don't test pediatric patients. That left the local Health Department. We got there around 12:30. I was worried that they would be closed for lunch, but happily they were open! We had an hour wait, but I was relieved to just get it done. When we walked in, I went to the desk to check in, and both little people went straight to the chairs to sit. They both had their DSi's that my sister had bought them two Christmases ago, so they were just sitting quietly. The girl in front of me who was about twenty, turned around to look at me and says, "I have never seen two little kids just go and sit down quietly like that. You have some really great kids!" Yeah, yeah I do :) We waited about an hour, but it went by quickly. Emily was trying to lead the way. Funny... we've never been there before. The nurses kept asking me why he needed the test. I explained that he has psoriatic arthritis and he needed to have it done before he could start Enbrel. The nurse looked at me like we all had 3 heads. Then she asked "what's Enbrel?" Seriously? Hmmm. At least we don't have to ever go back there, aside from to have his test read.
We had a chance to run home and grab some lunch. We had a whole hour to kill before we had to leave again. I used the opportunity to make some phone calls. I called our pedi to see if I could make Emily's appointment for late on Wednesday. Their answering message claims that their Wednesday hours are now until 5. I had been pretty excited to hear that since they've always closed at noon on Wednesday's. Well, apparently their answering greeting is wrong; they still close at noon on Wednesday's. I was able to make Emily's appointment for 9 A.M. Not so bad having the very first appointment, unless you consider that I'm supposed to already be at work then.. Throw into the equation that Zach needs to have his TB test read between 1:30-4:30 that day. Then, just for kicks, throw in that I have to send Emily to school tomorrow sick (though NOT contagious). Why do I have to do this? My company realized that everyone was actually using their sick time, and they decided that they want to stop it. I totally understand that there are many, many people that abuse this. They decided that you can only take 2-3 sick days per 6 month period unless you qualify for FMLA (Family Medical Leave Act) leave. No brainer, right? Two sick kids, under eleven should do it, right? Except they didn't get my paperwork back in time from the doctor's. That may partially be because, by federal law, they have to send it to your house via certified mail. It isn't the government's fault if you are stuck for two weeks in a hospital three hours away from home, right? Two of my higher up bosses have told me to not worry about the past time, but I have to worry about the future, too. So, yeah, I can't stay home with her tomorrow. I would LOVE to. I have so much to do. But I can't.
Anyway, after our break we had to run to their dentist for their scheduled cleaning. Emily still has several baby teeth that won't fall out. She won't let us pull them out. Her adult teeth are fully grown in around them, but they are stubbornly hanging on for dear life. Her dentist informs us that she will need braces- but not yet. Both of my girls are so careful with their teeth. Gir loves her little flossers and takes her time with her teeth. When she was little, Emily would wake up from a sound sleep (on the few, rare nights that she crashed before brushing) realizing that she forgot to brush and come wake us up. Screaming. I'm so glad her diseases are under control now. I don't miss that! Zach... Well, he's a boy. He doesn't want to be bothered with brushing. We almost always have to make him go back & re-brush. He has several cavities. Two of those are in his big-boy teeth. I can't say that I'm surprised, but I can't say that I'm excited, either.
Between the 3 kids, we have been at our pediatrician's office twice in the past week, with Emily's next appointment on Wednesday and Gir's follow-up next Monday. Yeah, this is how I spend my days off. Pretty exciting, huh? My son isn't nearly as sick as Emily was when she was diagnosed, but I'm hoping that I can get "absent for frequent appointments" on his IEP (Individual Education Plan). I worry every time he's absent. She is covered; the school has access to her medical records and it's in her IEP.
She told me the other day that her thigh muscles hurt. Scared me! Today she had no pain there, so hopefully there isn't a flare starting and it was just a pre-cursor to the reoccurance of her sinus infection. Zach... his psoriasis is TERRIBLE right now. I cannot wait to get treatment started. The poor little guy. It is so visible. It looks so painful and uncomfortable. At least now we're on the road to getting it started. Can't wait!
We had been waiting for months to get Emily's opthamologist appointment. She is supposed to be seen every 6 months, but her doctor doesn't schedule out that far, and so we end up going a month or two over every time. She has been worried about this appointment. I think that her paranoia fed her. She knows that she can get arthritis in her eyes; she has some friends with Uveitis. She also is one of the few kids in her class that does not need glasses. She sits in the back of the room, apparently back far enough that she's been having a harder time seeing the board. She was sure that she was going to need glasses. Nope! Perfect, clear, cell-free eyes! Her pressures look good, and she's 20/20! Thank you, Lord! I made Zach's appointment for March while we were there. Hopefully his eyes will also be clear.
From there we had to run up to a Health Department. We need to have a TB test for Zachary before he will be allowed to start Enbrel. Insurance won't even consider it without a TB test. Of course, our rheumy had mentioned this while we were in the hospital, but I was rushing to get back to Emily and it simply slipped my mind. I guess I got spoiled, and used to the doctor's arranging these things. I forget that, as awesome as this new doctor is, he is new to the hospital, and not quite used to all of their policies and procedures. So, it wasn't until four days later that I woke up at 3 A.M. realizing "oh, crap! We need to get his TB test done!" I called his pediatrician to set up an appointment only to find that they no longer do it. I called a local walk-in clinic run by a hospital. They advertise that they do it. They put me on hold to speak to a nurse, but after holding for about 5 minutes I hung up. We went their later that night, but they don't test pediatric patients. That left the local Health Department. We got there around 12:30. I was worried that they would be closed for lunch, but happily they were open! We had an hour wait, but I was relieved to just get it done. When we walked in, I went to the desk to check in, and both little people went straight to the chairs to sit. They both had their DSi's that my sister had bought them two Christmases ago, so they were just sitting quietly. The girl in front of me who was about twenty, turned around to look at me and says, "I have never seen two little kids just go and sit down quietly like that. You have some really great kids!" Yeah, yeah I do :) We waited about an hour, but it went by quickly. Emily was trying to lead the way. Funny... we've never been there before. The nurses kept asking me why he needed the test. I explained that he has psoriatic arthritis and he needed to have it done before he could start Enbrel. The nurse looked at me like we all had 3 heads. Then she asked "what's Enbrel?" Seriously? Hmmm. At least we don't have to ever go back there, aside from to have his test read.
We had a chance to run home and grab some lunch. We had a whole hour to kill before we had to leave again. I used the opportunity to make some phone calls. I called our pedi to see if I could make Emily's appointment for late on Wednesday. Their answering message claims that their Wednesday hours are now until 5. I had been pretty excited to hear that since they've always closed at noon on Wednesday's. Well, apparently their answering greeting is wrong; they still close at noon on Wednesday's. I was able to make Emily's appointment for 9 A.M. Not so bad having the very first appointment, unless you consider that I'm supposed to already be at work then.
Anyway, after our break we had to run to their dentist for their scheduled cleaning. Emily still has several baby teeth that won't fall out. She won't let us pull them out. Her adult teeth are fully grown in around them, but they are stubbornly hanging on for dear life. Her dentist informs us that she will need braces- but not yet. Both of my girls are so careful with their teeth. Gir loves her little flossers and takes her time with her teeth. When she was little, Emily would wake up from a sound sleep (on the few, rare nights that she crashed before brushing) realizing that she forgot to brush and come wake us up. Screaming. I'm so glad her diseases are under control now. I don't miss that! Zach... Well, he's a boy. He doesn't want to be bothered with brushing. We almost always have to make him go back & re-brush. He has several cavities. Two of those are in his big-boy teeth.
Between the 3 kids, we have been at our pediatrician's office twice in the past week, with Emily's next appointment on Wednesday and Gir's follow-up next Monday. Yeah, this is how I spend my days off. Pretty exciting, huh? My son isn't nearly as sick as Emily was when she was diagnosed, but I'm hoping that I can get "absent for frequent appointments" on his IEP (Individual Education Plan). I worry every time he's absent. She is covered; the school has access to her medical records and it's in her IEP.
She told me the other day that her thigh muscles hurt. Scared me! Today she had no pain there, so hopefully there isn't a flare starting and it was just a pre-cursor to the reoccurance of her sinus infection. Zach... his psoriasis is TERRIBLE right now. I cannot wait to get treatment started. The poor little guy. It is so visible. It looks so painful and uncomfortable. At least now we're on the road to getting it started. Can't wait!
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