Tuesday, December 31, 2013

End of the Year

I can't believe the last time I updated this was in September.....I suppose I will just sum up the rest of these past months to end the year.  I always said I would not be one of those who blog drop.  Just forget about it.

Gary is doing good.  We are coming off of a pretty good flare.  Still determining what caused it.  It was enough and long enough to warrant a medicine add.  What was most important that we did not add more steroids if we didn't need too.  Last month Gary was pulling full days in first grade.  Even riding the bus.  Suddenly his attitude changed.  His self changed.  He was angry a lot.  He was not happy.  Eventually, he would head to his room and insist he lay in his bed and relax.   If we did have an errand to run, it ended in full on misery.  It was hard to be around him.   Then some hip pain, swelling of his face, super red rash all over.  He would look chemically burned especially if he became active.

Right now he is getting IVIG every two weeks.  He is getting 350mgs of steroids every two weeks.  He gets Orencia once a month.  His labs have been generally good.  We did have a few in the past three months that jumped but came back down.  It literally was like a his labs were on a bumpy road. Not enough to make changes, but enough to add that bit of information to make the recent change.  We can't call that stable.

Gary's calcium deposits are doing.  They are still there but no new ones.  The ones around his bottom have been slowly shedding out.  They bother him but don't hurt him.  During a recent X-ray, they thought he was hiding something or things in his underpants.  It was showing up on the X-ray.  It ended up being calcium deposits.  It didn't take me long to figure it out.

With this recent flare, school has become a challenge.  Gary seems to be putting a lot of pressure on himself.  He gets overwhelmed.  Academically we want to give him extra help.  By the time he gets home however, he is done.  It will be ok though.  It will work out.  We will find what works for him.

This new medicine we added is called Immuran.  We have to be careful to make sure he eats with it but he gets really nauseated.   So far so good though.  Immuran is another immune suppressor.  It is two yellow pills.  It is suppose to be a medicine that blocks the skin pathway.  So we will see.

Thursday, September 12, 2013

Not the Worst

After our clinic appointment on Sep. 3, it was decided that we would go to see our GI doc, check in with him.  Well I expected that to take awhile but they got us right in.  I explained that we were seeing a bit of increase of diarrhea.  Nothing crazy but here and there throughout the summer.  So after collecting a "lab sample" which Gary can give on demand, turning it in to eliminate viruses and bacteria's that could cause, the doctor decided he wanted to do a repeat scope of both ends.  Again, I thought ok, I agree we can't be to careful with Gary.  I definitely didn't was make him go through that if it wasn't necessary.

I expected that to take awhile to get in.  But nope.  They got us on the schedule immediately.  We even had to stick around on Monday the whole day to hit a pre-op appointment.  That meant Gary was to immediately alter his diet for the bowel prep.  We had a light breakfast that morning.  Gary was already talking about lunch.

The nurse said to run out, get lunch, then start.  We had to avoid certain foods like fruits, vegetables, nuts, seeds, red dye.  So that wasn't terribly hard.   I decided since Gary had to go through it I would do.  All except the laxative part.  The next day Gary could only have clear liquid, jello, and Popsicles and 8 glasses of water with 3 doses of Miralax four hours apart.   Since I wasn't going to do the laxative part I completely fasted and did water only.  After 7pm the night before Gary could only have water.  By 8am the morning of, nothing by mouth.   He truly handled it like a champ.  It got a little rough in the morning.  We had several conversations about why he couldn't have anything.  He kept forgetting.   Our appointment was at 12:15.  We arrived at the hospital by 12:00.  At this point, Gary's body was starting to respond to his fast and clean out.  He became extremely lethargic.  He was getting the hot and cold sweats.  He basically could not stay awake.  He passed out in the hospital waiting room.  It was about 45 minutes past our time they said to be there so I went and asked.  He was sleeping on the floor at this point.  I felt his pain but I didn't do the laxative so at most I was spacey with trouble focusing.

I approached the desk to ask where we were at in line.  I asked how much longer it would be.   I informed them that he was passed out on the floor.  They said it would be soon.  I asked for a warm blanket to keep him covered.  At 1: 30 they came out to bring us back to the room prep.  We wheeled him back in the wheel chair.  He was even having trouble holding his head up and keeping his eyes open.   I was thankful he slept but it was hard seeing him in that state.  We got him in his gown.  Finally got his port accessed.   And at 3 o'clock,  he went to back.

I was able to go all the back with him.  They let me help with the gas.  He was so lethargic that he did not fuss once bit.  Very little anxiety.  He didn't have anything to give.  His eyes were glassy.  He could barely respond.  I was concerned but he did answer questions, and even gave a half smile to a nurse.  I was so happy that got on with it.

The results weren't perfect, but they were better from his last scope last year.  I think it has been even more than a year?  His colon did have signs of ulceration's, but I think those were the old ones.  The only other thing was 2 parts of his stomach were irritated.  His esophagus looked fine but further down the tummy right before the small intestine, there was inflammation.  There was no ulceration's just irritation with a little blood.

Yes, I wanted him to come out and say, "everything looks normal".  But with what he saw, the doctor is almost certain he would like to run the medicine we gave him last year, Remicade.  He told us that he would wait for the biopsies to come back but he was pretty sure he leaning towards that.  I told him that a discussion with rheumatology will definitely need to happen as I had talked with them about we were worry that the Remicade worked really great on his IBD or Crohn's, or whatever they want to call it, but not so great on the JDM.  We can't be sure it was the Remicade that suddenly had him limping and having trouble swallowing.  I would hate to go on, well lets try it and see.  That is hard.  I am very curious to see what rheumatology has to say about it.  I was clear with one thing.  I do not want an increase in steroids.  I mean if it was a life saving thing then of course.

Right now we are pretty tired.  We still have a MRE to go in the next couple weeks.  Tomorrow we have an all day infusion.  This was a bumped infusion from Wednesday because of the scopes.  They originally wanted to do it today (Thursday).  We did not get home until after 8 last night.  He was exhausted.  He slept so much in recovery.  He woke up crying and needing to go to the bathroom.  The first thing I had waiting for him was a chocolate starbucks frappacino thing (no coffee in it of course).  I started to let him drink it when the transport nurse stopped me and said, "he is going to throw that up with the anesthesia in him!".  I apologized but was like so be it.  I told this child he had to make it  to 12:15.  You guys took it all the way to 3 o'clock.  But that was my inner dialogue.  I fully recognize they don't have control over everything.  Besides Gary did at least sleep. I kept giving sips of his drink when they weren't looking.  It is my child, my vomit, I can clean it if I want too. I just knew that he wouldn't barf it up.  He didn't either.   If he did, at least it would taste good.

I am so impressed with my son.  He is starting to handle things a little better.  It makes it a little less challenging dealing with a that 2 to 5 year old when all he did was cry and behave badly in response to what was happening to him.  Now I think he understands a little bit better.  I wish he didn't have to but he does. I can be sad for that but no use in getting angry by it from a mother stand point.  That just doesn't do any good.  You do what do.

Wow.  On top of that we have been dealing with calcium deposits.  He has a deposit on his elbow and another in his bottom that have made there way to surface of his skin.  The one on his elbow grew to the size of a larger marble.  After a hot shower it burst.  I know it sounds gross.  I am just completely fascinated by it.  The one in his bottom is quite tender.  But the one on his elbow doesn't seem to bother him like that. Once it released a little bit, it seems to fill back up.  So now every time he take a bath or shower, it releases calcium.  Gary helps it along by gently pushing on it.  I will stop right there with the details.  The one thing that is important to me that no one in this family is allowed to say is, "gross".  I do not want him to feel embarrassed or ashamed by this.  I encourage everyone to maybe raise an eyebrow or say "wow"!, but it is just so important to me that no one acts as if it the most disgusting thing they have ever seen.  I don't care if you do.  Don't show it.  I'm sure he knows it yucky.  The tender deposit on his bottom might need some sort of wound care eventually.  The open wounds do concern me but they seem to seal off with calcium when it dries up.

Thank you so much to my baby sister who came with us.  It makes such a difference.  He loves his Aunties to pieces.  It was a big sacrifice for her because she hasn't been feeling good.   Don't worry, you can't catch what she has : )

This morning he sleeps.

My husband was suppose to fast with Gary and I.  I understood the other kids not doing it with being in school and everything but.....we agreed we would wait until Gary was done.  I estimated it would be about 3pm. So I told him at 3pm he could eat.   He made it to 11:45.  Good thing he was at work.  I understand you have to be at work, but if your not gonna be with him, then at least starve to death, LOL   :)  It was less than 24 hours for Dad.

Wednesday, September 4, 2013

Summer to Fall

I think this might be the longest stretch I have gone without posting an entry.  We left off in June.  I suppose I will just dive right in.

So we did a little taper at the beginning of summer.  It started with his home does.  We went from 10mgs to 8mgs.  That was successful.  Very small move.  The next change we made was the IVIG and Methopred dose.   He was getting 350mgs of methoprednisone once a week.  IVIG and Orencia once a month.  I wanted to try splitting the dose to IVIG up.  My reasoning was his skin became so clear after those monthly infusions but didn't last long.  So our doctors consulted with the experts and they agreed it couldn't hurt.  That is when we went ahead and implemented the second taper.  We did not go down in dose but rather spaced out the steroid to every two weeks.   That was in July and August.  Our September appointment was yesterday.  Gary is doing well but not well enough to keep tapering.  We had a few labs tick up twice.  Not jump up, just slight tick up a few points.  His AST and ALT are a low high.  I really wanted to hear lets keep tapering.   There are smalls signs of inflammation.  Calcium deposits have been making there exits.  Our doctor says she would be more comfortable if they were just gone first, then taper steroids.  But we have to try.  1 year and 2 months of once a week methopred pulses is enough.  But if we get to aggressive with our taper, that could lead us back to a place we don't want to be.   A place we are heading?  His cuticles look great.  His skin is ok.

Two years ago when we tapered all the way down to 1mg of prednisone with no weekly pulses, it ended in disaster.   The onset of this diarrhea.  Nothing that was alarming but just enough that we ended up with one little sick boy.  A boy who wasn't absorbing medications.  And now, it is slowly making its return.  I am thrilled with how well Gary does with what he has.  I am being pulled into the great darkness of worry again. At the beginning of summer I was feeling hopeful and empowered.  I told them to be careful with me.  I am in this game with myself of were tuff, we can take it.  Let Gary's body figure this out on his own.  I want to see him normalize.   Feels like my rug was pulled out from underneath me yesterday.  I am standing backup however.  We will get this figured out.  We have a repeat stool  test and see the GI doctor on Monday.

Today was the first day of first grade.  I made it all the way out to the parking lot before I boo hoo'd!  Yay me.  Drove to school at lunch to check on him.  Put more sunblock on him.  Everything was going great which made me feel better.  Cookies and fresh  bread are baking.

Monday, June 24, 2013

Steroid Taper: Ready or Not

Summer is here.  Kindergarten has been completed.  It definitely was a rock n roll kind of year but we muddled through somehow.  Gary finished out the year amazingly well.  We did get to the end of the year only to find out there was some error in communication.  He was under doctors orders to have sunblock applied mid day, everyday.  Not sure what happened but that stopped happening.  That is ok though, well, it is unfortunate but since he will be going to school full time in September, I will drive there myself at noon to apply it.  I put it on in the morning but it needs to be applied again.  So.

Gary is doing pretty good.  I am really sick, and concerned about too much steroids.  Last week at our monthly admission of IVIG and Orencia infusion I let it be known.  We are not sure if his disease activity is off but trying to figure out if his body is just steroiding out (red skin, muscle irritation) or if the steroids are holding JDM and it is still getting through.

The first bold attempt we made was holding off on his Rituxan treatment.  We are in and have been in the war of what is working and what is not.  So in May I was schedule for surgery.  I had to call and delay the treatment until I was better.  We had already talked about not giving it.  Well I had said (before I even knew about my surgical future), what about not giving it to him?  The doctor shrugged and said, "oh yeah, why?" and "ok/".  We are all really at this lets cross that bridge when we get to it in his treatment.  I think we all know that we need to make a move.  We need to see what his body does.  It is like playing Texas Hold Em.
I know this can get dangerous and only end in a monstrous flare.  The old me would have been on the NO WAY train but I really want my little guy to have a normal life, or something that resembles it.  He sported the moon face the entire kindergarten year.  I hope we can start first grade with no cheeks, and no flares.

What starts to stop me in this is his calcium deposits.  Some have gone way.  Some have shed out.   Some are large.  Some are angry.  Some are staying the same.  What I haven't noticed is any new ones.  It is often hard to tell because he has so many.  Trying to figure out if something is new, is next to impossible.

So the taper.  The doctor decided to first mess around with his home dose.  We are going from 12mg to 10mg, to 8mg.  Meaning this week he went down to 10mg.  In two weeks we will try to nudge down to 8mg.  So no Rituxan, and tapering steroids.  Told you we are getting bold.  He will still get a weekly pulse of 350mgs at the infusion center.  Sure it is nerve wracking.   Two weeks ago his ast and alt popped up but came back down on there own.  So my theme for this summer is, "On Your Own".  Come on Gary's body, do this on your own.

I had a salpingo oophorectomy on May 28th.  It is the first time I have ever had surgery.  There was a large mass on my ovary (10cm).   I got to experience the weigh-ins, height measurements, temperature readings, arm huggs, shots, pokes, prodes, medicines, ect,.  Everything my little man goes through.  I am still not over the shot of heparin they gave me in the back of my arm.   They did an excellent job with my iv's. I had a total of three.  But the big one, the man nurse did amazing.  I didn't even feel it.  It was on the top of my hand too.  However, I have had IV's started when having the babies, and those did burn and hurt.  Not trying to take anything away from Gary by saying that.   The month of May for our family was pretty stressful.  Walking around not sure if you will get to grow old was hard to take.  I went from running 50 miles a week to a stand still.   Like hitting a brick wall.  My family did a wonderful job supporting and nurturing me through it.  Recovery has been good but a little hard.  My diagnosis ended up being benign but I did have endometriosis.  I get the pleasure of taking birth control pills to stop it from happening again to my other ovary.  I am post op 4 weeks tomorrow.  I am still uncomfortable at times, working my way off of narcotic pain relievers.  I am having a really hard time sleeping but as soon as I can get back to my regular exercise it will be better.   I can sweat this stuff out of my system and get back to me.  Did I tell you I got a shot in the back of my arm and there is still a big knot.  I don't know how these kids do it.  My favorite was when they took my temperature.  They handed me the thermometer.  I was use to having to watch Gary have it put in his mouth for him for the past four years, I opened my mouth and waited for the nurse to put it in my mouth.  When I realized she was handing it to me, I blushed. LOL.  I also gave Gary's date of birth a few times because I am in such habit of saying his numbers.

My next challenge is a 1/2 marthon in Chicago on July 21.  Yep, it should be interesting.  As always I am excited to here about the lastest and the greatest in the world of JDM.

Well, Gary does.  Think I have mentioned my liking of her before but I'm back to praise again.  Dr. A is amazing.  She took on a huge project.  She charted and graphed Gary's care since diagnosis.  I myself had attempted it.  I had put it into a timeline app.  I had it all finished when the app crashed and I lost it all.  But I was moved to tears.  She handed me this 27 page packet.  It has a summary of every visit.  What is symptoms were, what he was on, ect,.  She also graphed it!   She got graph paper and was making a visible timeline.  They are in search of a connection.  TEARS  They often asked me has there ever been a time when you thought Gary was JDMless.   Like what medicines was he on when I felt like that.  My answer has always been, "I don't know."  We have always been on so many things at once.  Like cell cept and tacrolimus.  I think his skin was good back then but he had this under lying muscle weakness that I failed to see until JDM finally took over as the calcium developed and everything was abruptly changed because he was going over a cliff.  He had good skin for a short time but had a lot trouble with stairs, getting up on beds, into cars.  We always just dismissed it away or being on eveything he was on you completely rationalize it.  Now, if I could go back and whisper to myself, I would have said, "get off this train, its goes nowhere".  But just like we are right now, its the same predicament.  Do I feel like he is good enough to taper steroids.  It is hard to tell.  It is hard to say.  I am not sure.  I do know at this point in time we are ready to see what happens.  My biggest fear is getting him a path that we can't get him off, waiting for something new to kick in.  Or going back to what worked before, but didn't fix it.  Cytoxan, only got him so good.   Rituxan,  fine and dandy, but it didn't turn it off.   That is our ultimate goal.  A cure.  A cure is our ultimate goal.  

Thank you Dr. A!  We love you!  That packet is tough to read through.  It is like reading a story from the -Horror/Fiction section.

Saturday, May 18, 2013

Ok, so I over reacted.

I would like to temporarily apologize to Orencia.   We ended up doubling the dose.  One last ditch.  I like what I saw.  I like what I see.  Remission worthly someday, maybe.  I don't know though.

We have some calcium deposits that are on the move.  That means they are coming to the surface, red puffy, but not bothering.  They look no good but this aint a beauty contest.

This was month number two of double dosing Orencia.  We were set to run Rituxan last week but for the first time in four years, I had to call and cancel.  We might run it next month.  I feel guilty because it was I just couldn't handle it right now.  I'm not ready to share why but I will.    Everything is for reason however.  I was hesitant to run Rituxan again because it is so difficult to tell what is working and what is not working.    Labs are good.  Strength is fine.  Calcium, no new ones but bigger.  Capillaries not bad just red fingers.

He is an amazing kid.  He is so angry but whatever.  What  a special boy.  He says the greatest things!

Thank you to my family for all your help with everything.  My baby sister is such a great mother to my kids.  They really love her and my brother-in-law.  She is almost too good.  Makes me wonder if other plans have been set in motion.  I know in my heart that if something like that is true, like I can't be here, she will be so perfect.

Saturday, March 30, 2013



Your not the one.

I tried.  I know we have only been in a relationship since December.  Harshly enough, we are breaking up.  You don't block muscle weakness.

Buh bye.  I will handing in my next resignation very very soon.  Kiss it too the.............phew.    

When family members notice strength isn't what it was.   When weird rashes appear that you try to explain away.  You make me grieve.

Conversation:  "We should sign Gary up for baseball."     "Yeah I don't know.   It's too sunny and he seems, not all the way."


Gary ended up in my bed one night last week.  I woke to him tapping me.  In a whisper, "Mom, do you think I am going to pass away?  What would happen if I did?".   In my light sleep, "don't, I would be so sad."

But if you need to some day.  I don't want you to be in pain because of me.

But know, we will FIGHT.  I will drag you there if I have to baby!  F to the U JDM.  That is F to the U to the returning muscle weakness.   To the labs that don't relieve themselves.  Oh, I got this.

Wednesday, March 27, 2013

Happy 6th Birthday, Gary

Wednesday, March 13, 2013


It's March.  Time is marching.   Fast.

This month as been pretty good.

Gary had weird rash pop-up on his face these past couple weeks.  It was confusing for me because the rash was exactly where a dermatomyositis rash would be.  Cheeks, across the eyes.  But this rash was a little different.  It was raised, little bit of dry skin over the top of it, and it was on only one side of his face.  Last week he woke up and it looked like it was making its way down the side of his face to his neck.  I called the doctors.  I explained what was going on.  I thought maybe he was having a reaction of some kind to the steroid itself.  We are after all still getting pulsed once a week.  We keep expecting see improvement with the pulses but we weren't all the sudden.  In fact, the methylopred or whatever is in it or the methotrexate or ect., was making it worse.  I was concerned he was allergic to something or JDM was being activated somehow.

I love my doctor.  She takes the time to listen, troubleshoot with me.  We problem solve together.  She checks in with our lead doctor.  Our main rheumatologist was not interested in making any changes.  I had suggested trying a different kind of steroid.  I know they have them but I had yet to do any research on them.     She didn't want.  Instead, they ordered a dose of IV benadryl and tylenol.  The reasoning was because the only time he hasn't reacted or he walks out of the hospital looking like a new man, is with the IVIG.  IVIG has given us trouble in the past.  This new brand however, stopped that and all seems well.  So they talked about the difference between the dose of methylpred he gets with IVIG and the weekly infusions.  What was the difference?  The benadryl and the tylenol.   Worked like a charm.

Once the IV benadryl went in, the rash on his neck instantly started to go away.  It took another 24 hours for the one around his eye to go away but, it seem to solve a problem.  Now, WHY?  I have concluded when we go to our next appointment in clinic next week, I will have them point me in the direction of the allergist people.  I wanted him tested for allergies.

I am growing tired of the media and there reports on what is causing autoimmune diseases.  Since Gary has been diagnosed I tend to pay to the news when the title of the article reads, "Autoimmune" and scientists.  You know, things of that nature.  Of course it is going to catch my eye.  So far I have read the following of too much causes autoimmune diseases:   SUGAR, SALT, GLUTEN, PROCESSED FOODS, SUN, GENES.  I would like to add my own.  The WIND, RAIN, GRASS, CLOUDS, SKY, YOUR MOM, YOUR DAD, YOUR CAR.. . . . . . . . . . ..........I am aging.  My tolerance is less.  I do feel a bit arrogant and ungrateful with the information shared.  Because what is comes down to is of course, I want to know.  If we truly new then we would know where to pull the plug on it.  I admit it triggers my "FAULT" emotion.  If indeed it is salt, well then, its my fault.  I fed him too much salt.  I fed him too much sugar.   But if that is the case then why doesn't his siblings have it.  Why doesn't my best friends son have it?  I will continue to read the articles.  But I don't know what to believe.  I have really started laughing it all off because it is frustrating for a parent.  I suppose I compare it when they first introduced cigarettes.  They marketed it was healthy.  People believed it.  I know that is a whole different realm.  I was pointed out the media effect I suppose.  Only God knows.  I can't wait to get up to heaven.  I will ask Him, "so, what is the cause really? don't worry I won't mad You can tell me."  No worries, He won't be mad at me for saying that, He knows my sense of humor.  He gave it me.

Gary started at at new school.  The schedule of this school actually isn't too bad at all.  I was fearful but out the other two kids, Gary is doing very well.  I met his gym teacher yesterday.  He was very nice.  He made me smile because he admitted he was nervous with Gary.  He asked about his limitations, and his port.  I told him that, yeah, he could take hit for someone, and it theoretically could knock the port out of placement.  I explained however, it has been in since June.  Gary runs, jumps, wrestles, swims, bathes, everything.  I told him not worry.  I think Gary does a great job protecting what he needs to protect on his body.  I am glad that the transfer as gone smoothly.  Excellent school.   He goes full day on Monday, and Tuesday, and every other Wednesday.  I switched his weekly pulses to Thursday, gives him the weekend to recover.  Nice, huh?

Tuesday, February 26, 2013


The month has gone so fast.  I feel like my life is on fast forward sometimes.

We have already completed our monthly infusion.  He received his IVIG, Orencia, Pamidronate, Methotrexate, and Methopred.

So in the midst of my busy busy busy change, we had some errors.  I made a few errors.  My mind has just been so focused on our move, it was very difficult to manage everything else.  I even forgot to eat a few times.  Good for the scale, but just a little example of why this happened.  Gary switched from all liquids to pills.  He will be six in 4 weeks so it was time.  In the switch, I got a little confused with the pills.  It just had to be one of the most important ones.  Prednisone.

It was tiny.  One tiny pill.  Left off for about a week.  It was bad timing because we also went down 100mgs on his IV Methyloprednisone to try and make it easier on him.  It had been making him feel sick and very angry.  The doctors agreed it would be safe to go down on the dose.  So combine that with me leaving off the pill, and wa laa!  He began to get very rashy, and had facial swelling.  Good news was his labs held, and it didn't seem to effect the calcium deposits.  But it obviously kicked off his JDM process.  I recognized it right away however.  I called after it only kept getting worse.  I told them to kick that methopred back up to 350mgs, where it belongs.

Taking him into clinic was like going to confessional.  (Or what I imagine it would be like).  I let them know what happen.  After clarifying what the I did or actually didn't do, they laughed.  They only laughed at me because I of course it scared me that I could do that.  This is my job.  I am responsible for his health, his life, his disease.  I caused this flare.  They assured me that it was not the steroid pill.  More than one doctor convinced me that there is just no way.  The amount was much to small.  They were convinced it was the methylprednisone that is what caused him to get rashy.

Despite the mishap, our doctor is still pleased with direction we are headed.  No more calcium deposits, well he does have a few new ones on the front of his shins but I didn't discover those until after our overnight stay.    But other than that,  not to bad.  Labs held through all that.  I did remind them however, that is how Gary's JDM has always worked.  Rash, then weakness, then calcium deposits.  Hopefully we were able to stop it before any of that follows.  What is frustrating is that was an unintentional test.  No where near ready to taper.  It is hard to because we have really been struggling with steroid rage and the effects of it.  We have heard him say, "oh man my cheeks are so fat", placing his hands over them.  He has been angry, and very moody.  Very moody.  We are hoping it also has to do with our recent move.  He is adjusting.  Right now he is on a little extended vacation from Kindergarten while our family settles in so that nice.

I was looking through some old pictures that were from last year.  One I found shocked me.  I can barely stand to look at it.  He was clearly very sick in the picture.  We had tapered down to 1ml steroids.  It was during the not absorbing anything days.  Clearly, not only was he not absorbing medications, but food as well.
View photo.JPG in slide show

Tuesday, January 22, 2013

2013 Off and Running

Two thousand thirteen is off and running.  We have been going to the hospital once a week for overnight infusions.  Not easy but we get through it.  I think both of us are looking forward to a break.  We have had a few medication switches to try and solve some relentless issues like coughing.  Nothing major, clear lungs, ect,.  But when something like that keeps happening we need to try and stop it.  They switched his blood pressure medication.  Didn't seem to help.  Maybe a little bit.  The cough comes at night mostly.  Then we switched a medication that protects his stomach from the steroids.  The doctor wanted to try one last time to try and go after his hoarse voice.  It didn't last long.  The medication gave him diarrhea.  Food wasn't even digesting.  Gross I know.  But stopped that.  It slowly resolved.  Still having some issue though.

You can tell right now he is bogged down with medications.  Rituxan and Orcencia, these back to back infusions make it difficult to determine if his JDM activity is doing well or not.  Labs came back to normal and have stayed that way.  Energy is ok.  Rash is ok.  Another factor is this time of year.  January through April is always a very active time for his disease for some reason.  They were concerned a few calcium deposits have gotten larger.  This time we measured. She took her pen, drew a line around it.  Gary thought that was great.  A doctor, drawing on him with an ink pen.  So we continue to wait and watch close.  It is a  finger tap sort of thing.  I am doing my best to keep him healthy, active, and normal.  Whatever that is.  Can't wait for a break from the hospital.