Update

Gary is doing good. After a visit to the ER last week for a fever that wouldn't break on Wednesday, he seems to be bouncing back.

101.4, 102.2 even with tylenol, we called to see what they wanted us to do. The kids were just arriving home from school when we packed up. Elexis was just as upset as Gary was about having to leave. Elexis was turning ten the next day. I couldn't tell her whether or not we would be returning home. We can only be twoo careful however. The hospital is dreaded. I am sure it is for most people. However, when the effect of distraction because something outbod your routine is happening that tends to distract you. When you have been doing this for three years, that whole concept only plunges you into the unpleasantness of the ER visit. Gary wasn't sick per say. It was just the pesky fever that kept going up despite treating it. An emergency room isn't the best place for an immune suppressed kid to be but we had to do what we had to do. Not sure that is playing it entirely safe especially since it was like a scene from The Walking Dead (a tv show a few members of my family watch that I can't because it is too intense, zombies, blah). When they finally got us back to room, the rheumatologists intern who had just seen us from the week before popped in to say hello. She was on her way out for the day. We talked about what was going on. She said they were talking about admitting us, and getting the medications going that we were waiting on starting until he recovered. After an IV start, and one nasal swab later, labs looked so much better than they did the week before. The 5ml of steroids are bringing those labs down nicely. Not to mention it is also knocking out the heliotrope rash. Inflammation markers are still very elevated, a few started to trend down. The ER doctors came in, went through the usual student doctors. A mirage of questions, me educating them on what they are dealing with. Pleasantly, the student doctor knew of JDM, and DM as well. His neighbor, while growing up had JDM, and so did the father of this child. I always thought that was very rare but it is said to be genetic. The father I am familiar with. I remember reading about him. He was a famous football player in the seventies. Suddenly he became very tired. Running the football field became a huge challenge for him, ending his career. Anyway, another lab came back from the nasal swab. It tested positive for a virus, the coronavirus. Basically it is the common cold virus that is respiratoryish. It can cause many things. They asked if we wanted to go home since we knew what was causing this fever. I wish that made things easy. I knew getting that diagnosis was my chance to escape. There is nothing they can do for a virus but with a child who has what he has and its all complicated, you would think they would want to keep an eye on things. The rheumatologist who was attending did not even bother to come talk to us. They got the go ahead to release us. Our whole ER ordeal took about seven hours. We had spent enough time in the hot zone. I was feeling like the best thing to do was to get the heck out of there before we picked up something else. After sharing a bathroom with a little girl who looked terrible and another kid who practically puked at our feet, yeah, done. Gary was in the bathroom about ten times. I had no choice but to run out of there. My favorite part of the ER was by the time we got there, the fever broke. Ugghhh!

The next morning I called rheumatology to see if I was suppose to hold the methotrexate shot because of the virus. They called back and said yes. Later that day one of our doctors called to say we were suppose to be admitted. The wanted to get to work on stopping the diarrhea that had returned. Somehow, the ER didn't get the message. Neither did the rheumatologist on call. Everything happens for a reason.

One of the plans after the Thursday meeting is to bring us in. In order to give Gary immediate rest and healing to his colon, they want to check him in and put him on TPN, while on NPM. That means for a few days he wont be allowed to eat, and given nutrition by Iv. Uh, no. They want to start remicade which I am comfortable with of course but not the whole TPN thing. We have been on that before and it is difficult. Very difficult. I mean, I only will approve this if he just doesn't get better and it is completely necessary. I asked her to give me a few more days. i told her want this virus to cycle outbofbour house. Yep, we all ended up getting sick. Sneezing, congestion, nose burning, ect,. Give him a little more time to improve. Let the steroids keep working. The flare has come under control. He stopped having blood in his diarrhea. Let's just see. If I don't like what is going on, then I will bring him him. She was completely agreed. She said they are willing to let me drive this.

Where is the car headed? Well, he seems to have had a good day yesterday. The day before he did go 17 times. It wasn't all diarrhea but he still has one set of active bowels. The next day he went 8 times so big improving. I still am getting the feeling we are living on borrowed time however. I had hoped to make it too our original appointment on the 27th. On Wednesday he turns 5. No birthday in one of his least favorite places. We will see by the end of the week.

Where To Begin

I wish I could start this with telling you about our March infusion.  I wish I could say it was all easy peasy.  but it wasn't.  Monday was our clinic appointment.  We saw our rheumatologist for the last time in clinic.  She is retiring in April.  Everything at that point seemed fine.  Gary had run low grade fevers three different times in February.  We treated with tylenol and no other symptoms besides the obvious and same old diarehha.  By Tuesday things took a turn.  The fevers took a turn for the worse.  He woke up at 8am.  Came down stairs and went to back to bed on the couch till 1pm.  I kept checking on him.   I noticed his face swelling in his sleep, and a rash coming in.  When he finally woke up, I gave him lunch.  He ate a little bit then complained of headache.   I found the tylenol and noticed he was warm.  A fever of 102.  Before the tylenol could digest he vomited explosively.  I called and left a message with the nurse.  I assumed they would tell me not to come in for his infusion the next day.  But his doctor wanted him in.  Fever or not.  He felt much better after vomiting and even ate a little dinner that night and kept down his steroid dose.  But at 10pm another fever.  At this point I had a choice.  Give him more tylenol and sleep one last night in my bed or head to the ER.  We are veterans of this.  We have been here before.  So I decided  to give him tylenol.  If the fever broke then we would get up early and head to the hospital.  If it didn't then we would head out at midnight.  The fever broke.  We slept the night, well barely for me anyway.  The next morning we were admitted.  Things started to unfold.  During the clinic appointment it had been determined that Gary would need a colonscopy and endoscopy.  A level of inflammation was detected in a stool sample.  It was a level that was suppose to be 100 but came back to be 2500.  With that they said it was worth investigating further.  He was already scheduled to be admitted for IVIG and pamidronate so they were able to get him in for the colonscopy and endoscopy. 

Scope

The endoscopy and colonscopy was really hard.  After the labs came back crazy high, we got comfortable for an overnight.  Something is not right.  As soon as we checked in it was deteremined that he was scheduled so nothing by mouth was ordered.  The day before he was vomiting so he was really thirsty.  My day and his day went from bad to worse. After two hours of begging for something to drink, he was finally cleared for clears.  Chicken broth, jello, sprite, or clear candy.  All mixed with Miralax to clean him out for the colonscopy and endoscopy.  On top of already having diarreha plus giving him benadryl and the IVIG.  Made for an interesting time.  Imagine being sleepy but need to go to the bathroom.  He was miserable.  The misery sent him into a breakdown.  He awoke from a nap.  He was mad.  He kept standing on the side of his bed screaming, calling me names.  He threatened to pull his IV out.   He would not let the nurses touch him.  They needed to get vitals.  It was impossible.  As we came towards the end of the IVIG he became even more agitated.  Despite running it over a ten hour rate, stopping the infusion half way and giving him benadryl, he still had a reaction.  A large headache, hives rash all over his chest and unnatural irritation.  We abruptly stopped the IVIG.  They tried to run more benadryl but he was very intolerant.  I told them to turn off the IV, he had enough.  He was suppose to get pamidronate after that but he clearly had enough.  The IV was flushing fine but every time they tried to even push a flush, he responded.  Everytime we turned it off, he fell aspleep.  It was agreed to let him sleep through the night.  He had a procedure in the morning.  The day before he had been throwing up.  His body had enough.  He slept the night away.  Well, in between vital checks at which point they detected irregular heartbeat.  Turned out to be nothing.  Then his Bp dropped too low.  The nurses didn't like it but the doctors said it would be ok.  For the most part, his BP is on the high end.  So being too low was a nice change.

MOMMY I AM SCARED

We woke up the next morning at about 730.  We were scheduled to be transported to the surgery center for the procedure at 9am.  I was releaved when they came early.  After midnight before he was under NOTHING BY MOUTH at all until after the procedure.  So 8:15 rolled around and they came and got us.  Thank you Lord.  The quicker they got him in the better.  I had not taken the time to tell him what was about to happen.  I didn't know how.  How do you make a five year old understand?  I decided to wait until we were in the prep room.  I explained they were going to give him medicine to make him sleepy.  He was going to take a nap.  The bad IV from the night before was removed before so I was thankful to hear they were going gas him before starting a new IV.  He cried.  He cried a lot.  He told me he was scared.  Several times he needed to use the bathroom.  It was hard to talk to nurses and doctors in between running him to the bathroom.  He broke my heart with begging me, "Mommie, please.  I scared.  I soo scared.  Don't let them put me to sleep."  He cried for his Aunt and Uncle.  Thank the Lord again to them for coming again!  It made it easier.  It was time to wheel him into the procedure room.  He wept.  He wept as they placed the gas mask over his face.  I stayed as close as I could to him.  I remained positive and non chalant so he would not be scared.  I acted as if it was no big deal.  I refused to take my game face off.  As the gas took affect, his eyes rolled into the back of his head.  His knees fell to the outside of his body and he was quickly asleep.  The doctors looked at me and said, "ok Mom, give him a kiss".  I blew a kiss, he was out of my reach.  I couldn't bring myself to actually place my lips on his skin for fear the tears would flow in front of them.  I was not going to let that happen.  Game face.  Quickly out the doors with my sister and my brother in law.  I marched.  I marched straight faced.  I found a chair, sat,  and barried my face in my hands, letting my emotions flow. I kept it to five minutes.  After my sister said something to make me laugh, we went for coffee.  An hour later, we got the page to return to the procedure doors to meet the doctor.

RESULTS
The results of the scopes did find he has ulcerations in his colon.  Blood in the diarreha makes sense now.  It is why that is on hold.  Throat and stomach look normal.  The ulcerations in his colon are on the deep side but not crazy.  They took biospies.  They also took a lot of blood to test everything.  They want to make sure we are covering everything.  Infections, bacteria, viruses, ect,. 

RECOVERY
After we talked to the doctor he told us he was back in his room.  We bolted across the hospital to get over to the room.  He wasn't there.  He was still in recovery.   We were told to wait in the room.  I couldn't.  I couldn't sit there while my child woke up after begging not to put him to sleep.  I had to be there.  The nurse sent us back to where we were.  It was hard getting back there into the procedure room.  They would not let me back there until he was waking up.  They put me in a room the was for people going into procedures.  I sat alone for 45 minutes.  Finally there he was.  Crying in recovery.  Not much but he survived!  : )  We didn't spend much time in there and got back to our room.  Back in his room he slept.  He didn't even bother to eat.  He just slept.  I decided that we would come back for the other infusion we skipped the night before.  He had been through enough.  I had enough and so did he.  The doctors were fine with that.  We wanted to wait for him to wake up to make sure he was eating and going to the bathroom.  He woke up in a good mood and immediately started eating and drinking. 

HOME, Not HOME
We started packing up because there was no use sitting around waiting for test results.  We noticed Gary's face was pretty swollen while slept in recovery.  When he woke, the infamous JDM rash set in hard.  His eyes were purple pink, and his lips were huge.  I was concerned put thought it was from the fact he had a breathing tube down in throat.  That maybe that trauma was contributing.  We were packing bags, and getting ready to get out of there when the nurse said, "the phone is about to ring, please pick it up, its the doctor."  She explained that they had done tested his blood for levels of his medications.  One lab was in, the cell cept or MMF.  It read 0.  It meant that he is not absorbing his medications.  She asked us to hang out a little longer until they could talk, and figure things out.  The bright pink eye shadow he was wearing suddenly started making sense.  High labs, bright JDM rash, vomiting, he is flaring.  An hour later, after I stopped spinning they came in.  I immediately told them he needed to be pulsed with steroids.  I told them I felt his JDM is flaring.  He is no longer on cellcept.  They also discontinued the enbrel shots.  Deciding to pull him off of what we can right now is better.  The next morning we were going to determine what to do next.  Since tests weren't going to be in till next week, they upped his steroid dose back up to 5ml.  From 1ml to 5ml.  After the intravenous pulse he looked a little better.  We had opted to skip his methotrexate shot the night before because at the time we thought he was "sick".  It is looking less and less like that is what is happening.  That it is in fact, JDM.  Since we were working on our third day in the hospital, we went ahead and did our pamidronate infusion.

So now we wait for Monday, possibly Tuesday.  He is doing better but everything is in the air.  I hate hanging.

Our nurse flushing his iv in his foot. She was awesome!

Lots of things going on

So it seems Gary may have picked up a little virus last week.  Valentines evening he ran a fever suddenly.  I gave him tylenol and his fever was better.  With the diarrhea Gary already had, adding a stomach virus on top of it made for a lot of bathroom trips.  A lot.  Diarrhea has been in our news for quite awhile.  We even saw a G. I. Specialist to see if further testing needed to be done, to see if it was the medications, or what was going on.  At this appointment we also talked about his cough.  The cough has eased up but really its a cruel joke to have a cough and diarrhea at the same time.   Something has to be fixed.  We did some lab testing to make sure there were no bacteria's growing inside him or anything like that.  Funny after the appointment he came down with something.  Last week he did not receive his methotrexate shot or enbrel. It was a little tough for me because the next day on the 15th he ran a low grade fever.  The clinic was busy and our doctor was on call so it took them more than 3 hours to get back to me.   I wasn't panicked for my own sanity I wish they could have called sooner.  But instincts are still intact.  Besides he was still eating and drinking.  Monday he came down with mouth sores again.  Like normal things were HOT.  I did see places in his mouth that looked like sores or something.  So Monday, Presidents day they were not in.  Ok fine!  One more day but I was going insane.  I was up at the crack of dawn this morning leaving long messages.  They returned my call immediately.  Our doctor couldn't see him today because the schedule was booked.  So she had us run him up to our pediatrician.  It was good to catch up with him. He is the one who thinks it is indeed a virus of some kind.  He prescribed malox and benadryl for the mouth sores.  What confuses me most is back in November when he flared, the inside of his mouth did the same thing.  I do admit this does seem to be a bit different but still.  We headed to Children's to do pick up some medicines.  My phone rang as I pulled in.   It was the GI clinic.  Apparently the sample we gave a couple weeks ago didn't give what they needed.  Just so happens, Yay! we were there to do it again.  Then my phone rang again saying they were filling a prescription to slow down his colon.  I am a bit nervous it will slow it down too much and we will have the opposite problem.  I just want his tummy pain to stop.  Tonight, after his first dose, we had success with diarrhea easing up but not the stomach pain so far.  But its only been hours.  Keeping a close eye.  If this doesn't work they are talking about scope him from both ends or cutting back on medications.  Both sound awful and scary.

I am going on vacation.  My children are staying with my sister.  Yes, this makes me even more nervous to leave for 5 days but the trip was a gift from my brother.

February Infusion

Oh its always fun.  Every infusion is different.  I can giggle now.  *Note to self:  Never infuse in front of nurses station.  They talk about a lot more than just medical stuff.  Don't get me wrong, they were appropriate but even when they disagree with each other or other people, its not fun.  The volume on my ipad wouldn't go loud enough.  It's like taking a nap in the middle of a cocktail party.

Gary did good though.  He was on the floor because their chairs are just not his size.  I am going to bring a blow up mini mattress from now on.  Next month we are admitted to the hospital because he gets IVIG and Pamidronate.

Gary's labs are doing fine still.  He did have a lot L's on it this time that I am not use to seeing.  I asked the nurse right why is almost all his numbers marked with a High or Low symbol.  She started to go through each number and explained that with all his medications and the fact he has a disease that they expect that.  She said his labs are very close to normal like by one number so it is nothing to worry about.   Yeah.  Ok.

We dealt with the drama of not having enough time in the infusion center.  They came to me and said, "the infusion center closes at 730.  At the rate we have his infusion set and the delay, we are going to run out of time so here is what we are going to do.  I already called the doctor and she ok'd it.  We are going to bump the rate of up at the end in order to get the entire treatment finished."  She sat there and rambled on about how it was important he get the whole dose.  Blah.  Blah.  Blah.  I said no.  I told her I don't feel comfortable risking making him sick or pushing a reaction because people are inconvenienced by time and want to go home.  I told her I would be willing to come back tomorrow and go home with the IV in.  We had an appointment with a GI specialist so whatever, no big deal.  Then I said what about just admitting us then?  Put us on the floor.  She said they won't do that.  Ok.  Moments later our Doctor dropped in.  She was checking on Gary.  I told her I am not comfortable with pushing the rate of the infusion.  She said no problem.  We will just admit you.  I looked at the nurse and said, "yeah, I asked about that".     They were agitated.  The nurse said we have to wait for admission to call when a bed is ready.  Dr. E said there is no bed shortage that she had heard of so it shouldn't be a problem.  After the doctor left I heard a small discussion about exceptions and the what not's of the whole situation.  Left hand talking to the right hand.  The nurse came back and said we probably wouldn't be admitted until 630.  Well Gary is sleeping on the floor right now so why not just send us now so he can sleep in a bed.  Get settle, get comfy, get away from all this noise.  She said she didn't have control of that.  She had to wait for admission to call her.  Ok, because they knew that if we were admitted at 630 by the time admission was complete, we would be ready for discharge.  So after all this 630 rolled around and in walked a charge nurse with a calculator and 2 other nurses.  She figured out that we would indeed be finished by 730.  Really, after all that.  Made me giggle in a exhausted sort of way.

The Popsicle

After Gary awoke from his benadryl coma, he had hankering for a popsicle.  They didn't have any.  So for one of the first times in our history with Seattle Childrens Hospital, I left him alone.  Awake.  I have snuck down to Starbucks maybe once or twice.  I ask the nurse to watch him as her desk was right in front of where we were being infused.  It was quick and did the trick.

Poisen

Have you ever heard you have a choice how you deal with life?  I believe there is truth to that.  But I don't believe it is entirely 100% correct.  I believe that everyone is different.  Our bodies are different.  Our chemicals are different.  What seems like no big deal to someone else is so much more to someone else.  I have dealt with this my entire life.  The poison I call it.  When something triggers me that I don't care for, I can feel it go through my body.  Its like a leak of yuck in me, producing foul, anger, sad emotions.  Over things I would normally shrug off.  Over things I know will turn out fine.  But no matter how many times I tell myself this fact, it still gets me, creeps back in.  It kind of feels like depression or maybe grief.  My grief yesterday was triggered at Gary's clinic appointment.

Rheumatologist Retirement
"Don't you look nice!" she said as she entered the room.  I thanked her and thought what a nice compliment.  We started with our usual chit chat.  How are you?  How is he?  How are things?  Long list, and she saved the best for last.  I will get back to Gary later.  "Erika, I have something to tell you".   That triggered no emotion in me.  It didn't strike me until the next sentence.  "I'm retiring."  She intently smiled and grimaced and waited.  I don't go around asking woman how old they are.  I couldn't believe I didn't realize it was time.  She is 65.  She has done her time.  But my reaction.  Panic.   My thoughts spun.  They pushed forward then swung back.  I went into a stare.  Then tears welled up, went away, and came back as I said, "you can't,  you can't do this."  As my emotions and ration kicked in I went into what a polite selfless person does and congratulated her.  Told her I understood.  I began to thank her, because that was in fact my heart,  I am thankful.  Then I stared some more.  She told me I have done an excellent job in Gary's care.  She was being sincere, but again, its a natural reaction to smooth it over.  She stared at me.  Another round of tears came and went.  We reminded each other of past treatments, and what a wild ride it has been for Gary.  I told her given the severity of Gary's case, that she and her team had done a very impressive job of getting him back and keeping him functioning.  I suppose I am so upset with this because as a patient there is a vulnerability of connection.  I connect all the bad news that has come with this disease, and the good.  Even when I had complaints, there was always praise and gratefulness.  I have been mad at her for silly things.  But I can't barely remember those.  I know it will be alright.  I already called and am on the schedule to have another doctor with the same level of experience, whom I respect, take over.  She told me I was on the list of patients she was most worried to tell.  The emotions this triggers is unbelievable.  I do tend to be emotionally dramatic maybe a bit irrational  when I hear things I don't care for.  Not loud or rude, well maybe but she was right to worry.  I'm still trying to entirely connect I'm taking this so hard.  I am in the market for a fabulous retirement gift.  I know with time I will mend.  LOL.  Feel like I am going through a break up.

MY BOY

Calcinosis around tail bone. 

Before the bomb was lowered, we went through all the discussion.  I told her I was done with this cough.  I wanted it to stop.  Please help me get this fixed.  Same with the diarrhea he has 12 times a day.  She is wonderful, she wants it fixed too.  Tomorrow we have a CT of his sinuses to see if its a drain.  If its not his sinuses then we will check if it is coming from his tummy.    She said she would check with the GI department to see if we could prescribe an anti spasm medication for his colon.  We moved on to JDM stuff.  I told her his nail folds look like crap.  She wrote down bad.  She giggled and said, "I will write bad if thats ok?".  She is very much use to me.  Upon examining she said, "I don't know, they don't look".  She stopped when she moved on to the next finger, and the next.  Did a never mind.  He has one or two fingers that are ok but the rest you can see visible dilation of the blood vessels.  I let her know there are a few new calcium deposits in his face.  The calcinosis around his tailbone is showing signs of surfacing.  For a few days I thought they might be a little pimple or something.  Most the time I can gently schratch something like that off.  It didn't.  She talked about seeing a surgeon so they are aware of him.  However, upon examination she said they are pretty deep still so it could wait.  We are under doctors orders to still gently.  She did his strength test.  We had a conversation about Gary's hesitation with stairs and certain things he can't do that leave me seeing muscle weakness.  She made a remark about how strong he is after doing the test.  I know she doesn't say that to negate what I am seeing or make me feel like a crazy Mom.  The victory was mine however at our next appointment.  Gary had a physical therapy evaluation.

PT
I can't wait till she gets the report on this one.  The therapist hit every point I was seeing.  His function his there but his strength is not there to support it.  He has hip and leg weakness.  He straightens his left leg.  The therapist said it could be from calcium, "he goes up and down the stairs with a lot of compensation, like leaving his leg straight, pivoting his hip", much like an eighty year old man.  I am not sure how many times a week we will be doing physical therapy yet, but the orders will be doing in.  Time to get this boy strong or stronger.

SocCoR
Gary is such a sports guy.  He loves it.  So I signed him up for soccer.  Hopefully he will just stand there and look cute so the ball doesn't hit him or anything like that.  Doubt it.  It will be good for him? Hands over eyes.

Infusion next week.  Not looking forward to it.

IVIG January Infusion

*Woops forgot to post this.*
Ok.  That was terrible.

I thought a good night sleep would help me feel better about, but I wake up this morning feeling worse.  I feel somewhat selfish saying that.  I am not the one who get a needle jammed into my hand (well it was his wrist this time).  I am not the one who had drug slowly drip into me making me feel terrible.  But I am the mother who has to watch.

Our infusion clinic was recently remodeled. Yesterday I received a call asking if we could go to Bellevue instead.  I quickly returned their call and said sure.  Then thinking it over I changed my mind.  I wanted to keep our appointment because of the reaction Gary had last month.  He also had a slight case of the sniffles.  I called back and said sorry no, can't move appointments and we need isolation.  

I was slightly worried when we arrived at 8am in the morning that our appointment would have been moved but it wasn't.  Up at 4:40am, out the house by 6:15am arriving at 8am would be not fun if we didn't have an appointment.

First order of business was the reaction Gary had last month.  The nurse didn't want to start anything without talking to the doctors. I did feel that the benadryl may have just worn off during the last infusion.  I explained if we ran the benadryl after the methopred then things may go smoother.  She was cautious though and really wanted to talk to the doctors first.  When she returned to our room, she explained Dr. E was on her way to talk to me.  She explained Gary may not be receiving Ivig and just methopred.  I was a little surprised by that.  I was not sure how I felt about that.  It's a weight issue.  Weighing disease activity verses side effects.  When the good doctor arrived I explained what had happened last month.

I was nervous about traffic that morning.  The route we take to the hospital now has a toll bridge on it.  So, to avoid the toll, we have to take the more traveled way.  I left as early as I could.  We made excellent time.  I know it won't always be like that but I was so relieved.   Not to mention the beautiful sunrise.  I wished we were going to the airport as we passed the exit.



Dr. E decided to proceed with the IVIG  but at 1/2 rate.  That meant 10 hours in the infusion center.  The IV start was terrible like it always is.  We are running out of veins on the tops of his hands.  The numbing cream was only put on the tops of his hands.  They found a vein in his wrist again.  During the iv start he started to try and vomit.  He told the nurses through his many tears that he hated his world.  None of the full grown adults who have experienced life and its good and bad times, did not like hearing that.  I think all of our hearts cracked a little.

Labs came back clear.  Meaning no extreme elevated levels.  He has one inflammation marker that is up and has been since February of 2011.  Our fellow doctor was starting to explain it could be up because of the cold he may have.  But she had to eat her words once we saw how it has been bouncing around for a long while now.  The doctors came to us again for our clinic visit.  This time however, it was a no go.  Gary was in no mood.

He actually seemed mentally disturbed.  It was crazy.  He would not let anyone touch him.  He screamed and told them to get away.  The doctors would like him to get evaluated by a child life specialist.   Help him deal better.  We are also going to do another evaluation with physical therapy.  He has a little trouble lifting his leg into his pants when dressing.  He is also very cautious.  Very cautious.  He tends to hang on to things for dear life for stability.  Its not a weakness per say but there is definite signs of maybe some overall residual muscle damage/weakness.

UPDATE: 01-24-12

Gary is doing better and better.  Each day that goes by, you can see the effects of Rituxan kicking in nicely once again.  We just thawed out of a snow and ice storm.  No power for 2 days.  Gary was very inconvenience, lol.  He kept running over to things to see if they would work.  He asked if we had a little power.  He was confused because the water still worked.  We had an awesome time sledding.  Gary loves it and is able to play in the snow just fine.  Walking up the big hill over and over again.  He does have a cough that is bothersome but only at night it is really bad.   Think he just might have the sniffles.

A very special gift from our fellow JDM friend Sue and Kristen.  Gary's new favorite.

2011 in Review

I was attempting to think back to the year.  I have said it before and I will say it again.  I am so glad to have my blog.  Helps with ones memory.  So year two of JDM.  

We had limps and bumps.  

We had x-rays and scopes. 

We had crossing toes and I don't knows.

We had labs that went up and labs galore.

We saw a dentist and giggled with gas.

We fought flares and getting up stairs.

We lowered meds and upped them again.

We had Make A Wish!!!!!!!!!!!!!!!!!!!!

We are ending 2011 with lots of pokes and I will spare you with thats no joke?

Think its time I end this.........stopping.

All in all I think Gary is starting to respond to the Rituxan again nicely.  The heliotrope on one eye is fading.  The other heliotrope rash on his other eye is taking its time but hopefully by his next infusion it will be even that much better.  I think Gary's JDM doesn't want to be messed with for awhile.  I think we need to keep him in a inactive disease state for awhile.  Every time we think we got it.  His disease is just not that way.  The next time we try to lower anything, I will have to take into account just how long its been and what happened last time.  

My pediatrician said something to me at the beginning of this.  It has stuck with me to this day.  At the time I didn't believe him or didn't want too.  "I don't think we have seen the worst of this".   I pray he still doesn't think that. 

Here are some of my favorite and not favorite pictures from 2011:

After the last Rituxan infusion.  Poster for miserable.

Is it working?

Merry Christmas and Happy New Year!  It always comes with, I can hardly believe another year is in the books.  Life is going by so fast.

Gary is doing pretty good.  We had our IVIG infusion one week away from the last dose of Rituxan.  Aunt Amy was asked to come this time so she did.  We told Auntie it would only be a half day.  It turned into a full day.  : ( Sorry Auntie.  This infusion was a little rough on Gary.  I think the back to back infusion made him less tolerable.  For whatever strange reason, he could taste it.  Every time they flushed his IV.  Every time they started a new medicine, he could taste it.  He would wince, grab his tongue and say yuckie!

I can only recall a few infusions where Gary did not fall asleep.  We have another one.  At the end of the infusion, he started having a reaction.  The first sign was irritable.  He was laying in the chair.  The nurse bent around him pinching his leg.  That set him off.  He tried to cry but went into complaining he was hot.  We didn't think much of it.  He said it again.  I took his blankets away and still didn't think much of it.  The IV came out we were ready to walk out when he complained again and began to scream.  I ripped his shirt off to cool him down.  His skin was red and blotchy.  Great.  The IV was already out.  Got to be kidding me.
They called rheumatology right away.  The gave him a big syringe full of benadryl.  His blood pressure was high and so was his heart rate.  The nurse came in and said they needed us to stay another hour.

The benadryl worked like a charm.  The next few days that followed were tough.  He was sick for 4 or 5 days with headaches and diarrhea.

As Christmas rolled around his color had not gotten any better.

He is better though now.  I was very close to having his levels checked.  But I remember the past where is color gets really awful.  They have never treated his color so I didn't take him in.

Tomorrow we have a dentist appointment.  Next infusion is Jan. 11.

Rituxan Part 2

Awww the love of infusion.
This infusion we did solo. Just me and my little boo.
We checked in at 4:30pm.  They were running late.  No problemo.  I mean I did ask what is the delay.  I have to.  My four year old knows what is in store for him (IV) so to prolong that is not the at the top of my list.  I instantly asked a nurse what was the delay.  It was more of a reflex.  Nothing as changed much.  Capillaries look  a little better.  Labs good.  Strength, clinically good.  Home.   Hmmmm.  I question it a little.  Like suddenly he cannot get up on my bed no matter how hard he tries.  No, not an attention seeking thing.  He cannot get up on the bed, pulling himself with the cover, stepping on the side rails.  Nothing.  Leaves him frustrated.  Leaves me frustrated.  I am left to wonder is it normal for a four year old not to be able to pull himself up on the bed??  He was able to do that before.

It was fine he we were delayed.  A Wednesday night.  Daddy went home to be with the kids.  They are great about setting the doctors up.  I was told twice it would be 30 minutes.  It was only 15.   Clever way to set my emotions up.  Really I didn't mind.  We went over the usual.  I do agree he is doing better.  His gums are a bit better, skin is less purple.  I decided this time to pack up a couple of things we don't usually bring.  The distraction technique came in to play nicely.  So nicely, I think Gary was actually excited to stay the night.  I packed our Wii up and a gingerbread house.  We were put in the same room as two weeks ago.  Luckily our roommate had not checked in yet.  He was still coming out of surgery so I quickly jumped over to the window.  In my opinion, that is the prime spot! A view of the cranky.  Yes!  Ahhhh the little things.  No fair to our roommate but guess what?  He was 18 years old and was having a really rough time coming off the anesethic.  He vomited repeatly.  The. Entire. Night.  I would like to run a poll.  Crying baby or listening to someone puke all night.  Hmmmm.  Tough one.  Anyway, the IV team passed by the room.  Gary knows the sound of the cart.  He knows their voices.  I was working hard to get the Wii going.  He froze and looked at me with fear.  "Is da pokie ladies!!!!!!".  I told him not to worry. Our nurse was getting ready to do the numbing cream. Her experience was lacking but she was attentive.  I had also packed another little surprise for him.  New Lightening McQueen Pajama's!  So before we hit the showers, the IV team wanted to take a look at his veins and mark with a black sharpie marker were they wanted the numbing cream put.  We have never done that before but OK.  So that is what we did.  She lightly applied the cream.  In all our stays they have always caked it on thick.  I asked her to put on more.  She said sure.  By the time the IV time came back around it was someone we had never met.  I have to say when I see someone at Children's hospital on staff that deal with us, that I don't recognized, I always point that out.  "Hi, I haven't met you before?  Are you new?"  My confidence I think is a bit arrogant.  Its not like I own the place. 
So the whole marking the vein with a sharpie was funny.  The ink smeared in the numbing cream.  It was a big grey mess.  But luckily MJ, our friendly IV team friend hit a great vein in the crick of his wrist.  He cried but not as much as the shot.


The Shot
Nurses in training was the name of the game this fine night.  She was being supervised by a senior nurse.  Sometimes that gets a little confusing.  Two people running things.  One person missing things while the other reminds them and tells them how to do things.  There are so many details that come with that job.  On to the subject of the shot that hurt Gary and my world.  With the new nurse armed with an enbrel shot, she desparately asked me if I wanted to give the shot.  Her manbee pambee look.  Her lack of confidence.  It drove me to say, "sure, I'll give him the shot."   I wish I could take it back.  I don't know what went wrong.  I have gotten our shots at home down to no tears.  Whiney, a little, but no pain or he copes with that pain.  Gary was in store for more that one poke that night so I wanted to knock it out, get it done.  Can I go back in time and step in and say do it later?  Please.   Please. Please!!!!!!!!!!  It was the worst.  First they did not hand me any  alcohol swabs to clean his skin.  I was ready to give the shot on the top of his thigh.  They had to scramble to find one.  I mean, hello, your nurses.  Why would you hand it to me without following what you would do.  As I got the alcohol swab done, she handed it to me.  It did not look like the one at home.  It first looked like one of the pen kind that you shoot the trigger.  They were like, what are talking about?  Ok so.  Pause here.  On a professional level, if a mother shows fear, lack of knowledge or lack of know how, as a nurse I would step in and say, wait up here.  Lets go over this.  But no.  They just let me look like an idiot.  Once she revealed the needle I wasted no time.  At this point, he has seen it.  I want the fear and agony of it to go by just as fast as the shot does.  He screamed.  He turned bright red.  He rolled.  He screamed some more.  What had I done?  Too deep?  Too hard?  Too fast?  Too slow?  Was the needle larger than normal?  Was that even the right medication?!!!!  They showed no concern, well they asked if he was alright.  I instantly said, "he never reacts that way?"  They scurried out of the room.   He was due for another lab to check tacrolimus levels.  I wasn't doing that one!!!!!! Still not over this.  I really wish I know what I did wrong.  I do know that I will never ever be the one to give a shot at the hospital.  The nurses should always do it.  But then again, if they had given it and he reacted that way, I would have been just as if not more upset.    He recovered fine.  Lots of sighs and sniffs.  And my heart is broken.  It still is.  Never knew I could break my own heart over an action. 

1:00AM What is the hold up?

Gary dozed off about midnight.  It was from the benadryl they had ran.  They had come in to tell me his methoprednisone was on the floor ready to go.  He was snoozing so I decided to rent a movie that I had been so excited to rent all week just for this night.  I got about an hour into it and decided to pause to see how he was doing.  Too my frustration, nothing was running in his IV except saline.  A nurses assistant came in to take vitals.  I asked her with spite, "why are doing vitals?!"  She had a thick russian accent.  I could not understand what she was saying.  Something about they are getting ready to run the first med.  Soon the nurses, thing 1 and thing 2, came in with his methopred.  I asked what was the delay?  I said it has been over an hour since the benadryl was ran.  The methopred should go right after that.  Not a long stretch of time for it to wear off.  It will wear off in middle of the Rituxan.  Then we have to dose him again.  Then he gets more that he needs which delays things again.  I felt sorry for them.  They said it got caught up in pharmacy. 

We did not check out the next day until 430pm.  Which,  whatever, it is what it is.  I was exhausted as always.  I really had to be on my toes this time.  They tried to give him a TB test.  I said no.  They tried to give me a drug to give him that was for a bacteria infection.  Gary does not have a bacteria infection.  They did start him on magnesium and a protein tablet.  Today was the first day I was able to get him to keep it down.  He has been throwing it up.  But hopefully I found the way today.  Mixing his multi-vitamin the magnesium and chocolate sryup.  We will see.

We have IVIG again this Wednesday.  Then a break from the pokes!    As I explained to the doctor whom we hadn't seen in awhile this dose of Rituxan will be the true test if Rituxan in fact is working on his jdm.  He has had lots of steroid pulses as pre-meds to the medications.  Once those wear off, we will see if the Rituxan is doing its job.  Last dose they also increased almost all his medications.  We did not know if it was from the increase of the dose of Rituxan that got him out of that flare six months ago.

My Favorite
"It is a little dishearting the b-cells that Rituxan deplete have never come back."  Implied why run it if it kills something thats not there.  Then whats working?  Whats not?  Love doctors.
  Gary and I got endearing messages like, "we miss you guys." 

Rituxan Infusion

Thank you to everyone in my life that rearrange their life to help our family accomodate the infusion.  And not thank you to everyone who didn't.  LOL.  That's alright.  The world does not stop spinning because of a child's medical condition.  But I don't know.  If I got an email that said, "my son is going into Children's Hospital for a unexpected chemotherapy infusion, could you help me reschedule?", I vow to do everything possible to help you.  Thank you to my baby sister for always saving me and being so willing.

I was offered to do our Rituxan infusion in the infusion center.  Hmmm.  I love my own bed.  Sleeping is so nice. But having a flash back to last week, I had to insist on an overnight infusion.  I don't care what it cost.  I don't care who is annoyed.  I don't care what needs to be rearranged.  It has to be this way for the good of my little man.  And what a little man he is becoming.  He is slowly but surely maturing.  He is able to pick out the good parts.  He is able to pick out the bad parts.  I was impressed with this.  He knew he was going to be getting an IV, but looked forward to picking out a toy from the prize box.  (If you have ever donated to Children's Hospital in Seattle, my little boy is the one you bring an joy to!  A distraction that pulls him through having to have a large needle rammed into the back of his hand over and over again for the past two years.)

We first stopped off in clinic.  Clinic is always fun.  We have a really great fellow (intern) who did a great job examining him.  She tested him thoroughly for strength.  We chit chatted. Since we had just seen her six days ago not a lot had changed.  She did mention she heard that I had called on Friday.  Yes I did.  I was having a little panic session because usually after a pulse of steroids and IVIG,  he is pretty white.  An angelic look comes over him.  The flare he is in however didn't let this happen.  He was redder than ever which made me so nervous.  It took me right back to the beginning.  I was just fearful he was going to get sicker with JDM.  The nurse talked me down.  Told me who was on call for the weekend.  I was certain at the time he was going to need another pulse. I inquired about the weekend.  Just wanted to let them know that I hated all of it and we may need to come back.  But breathing and embracing a calm is something mothers have to do.  I was close to pulling the emergency cord, (metaphorically speaking) but talking myself down, once again, my son has a disease.

I inquired about a bit information that our main rheumatologist mentioned last week.  When giving IVIG and Rituxan at the same time, IVIG neutralizes Rituxan.  Come again? Because the first 4 doses of Rituxan were all given with IVIG.  I didn't want to discuss it at the time because my brain was still processing this.  I didn't want to face.  I came home and posted it on the JM Support Board.  I felt a little guilty afterwards.  It struck me, what if I didn't properly gather all the facts.  I decided to wait to get the full explantion.  Enter the senior rheumatologist.  She explained that currently it is a theory.  That this has not been proven, but if you think about how IVIG works and how Rituxan works it would make sense that the two cancel each other out. IVIG clings to antibodies to rid of them so they will stop going after his body.  Rituxan is a antibody that clings to cells that cause inflammation.  Hmmm.  I hope I got that right.  Don't quote me.  Anyway, she further explained it is about a style.  They have kids that with diseases that are treated with same medication who need to be treated quickly.  They do not hesitate to give them together.  They have seen Rituxan work but still its not know if it is doing its full job when giving with the IVIG.  I kind of apologize to my JM Mommies but then again I don't because its not all together true or false.

CALCINOSIS
Gary's calcium deposits have been on the move.  I am a little baffled by they ones that are on the backs of his knees.  They decreased in size but now have started giving him trouble on his skin.  Like they are trying to exit.  They have increased in size around his elbows as well.  A new one has come in on the bottom side of his fore arm along the bone.  It feels kind of big.  The calcium on his bum is also bigger and showing signs of vascular eruption.  I made that phrase up but in my terms, little purplish dots and rough skin around the calcium site.    I did get some good pictures.   Sadly, they are big enough to show up on camera now.

I added the little blue arrows to point at some of the calcium deposits.

Calcinosis on the outside of his throat.

Waiting for orders, to wait for the IV team, to wait to get an IV.  Anxiety.

Inflamed cuticles, burst capillaries, swollen fingers.

I would give almost anything he wanted during an infusion.  Any time.  I draw the line at cigarettes and beer.  But chocolate.  Yes.  I hate how benadryl makes him sleep with his eyes open. Creepy.

Effects of Rituxan.  No, just testing out next years Halloween costume.

Gary's sweet nurse putting the puppy dog stickers on his chest.  I love the smiles they shared.

November Infusion: FLARE

Last month I was worried about the taper of steroids.  But time and time again, there is not much I can do about it until it comes to past.  Because even I admit, "what if I am wrong".  But walking into the hospital on Thursday I was so nervous.  I was nervous because I knew I had to get my Mom on and make sure things got done the right way.

Somehow we scored a bed this time in the infusion center which was nice!  It is up near the nurses station so the all the nurses step in and help.  We had like 4 nurses in our room when we were getting checked in.  I found my main nurse and explained I was about to be a pain in the butt.  I asked her if she could page rheumatology before they started any medications.  They are always compliant for the most  part.  She dropped a bomb shell right away telling me our rheumatologist was not in town.  8 O  What?  No.   "I talked to someone.  He said he was in a meeting and would come when he could."  Well. well. well.  I knew exactly who that was.  I protested.  I even called him a harmless name.  Our nurse desperately scrambled trying to get another doctor to come.  It was too late.  There he was.  It really was no big deal.  He was with our fellow who saw Gary last month.  I told our doctor it was nice to see him.  It was too.  Just wanted my rheumatologist.  But settle for two fellows.   Here is what I have been seeing:

Heliotrope rash, and facial swelling.  Some calcinosis had penetrated the skin on the back of his knee.  It is showing signs and getting larger on his backside.  They agreed.  I don't why I felt relief and panic at the same time.  

We had a clinic appointment set up for 215.  We checked in at 1015.  There was no way that was happen.  So they accommodated and came to us. In walked our doctor who was out of town.  I told her I was having a shcitt fit she wasn't there.   Yes.  Yes I did say that.  I was just so relieved she was there!  She examined him and said, "yes, he is flaring."   Changes in capillaries in his fingers with so many other signs.  We are going backup on our steroid which is only 1/2 ml but enough to make a difference.  We are going to run rituxan again at the end of the week.  Gary's labs came back fine.  But he is still flaring.  

The trip home was the pits.  Awful.  Traffic made our trip into a 2 1/2 hour ride.  All's he wanted to do is lay down.  He cried the whole way because he just wanted to sleep and couldn't.  Side effects from IVIG seem to really be increasing.  He nears vomiting and is so miserable.  I feel terrible.  I wish I could have pulled off, got a hotel, and tucked him in for the night.  He would have loved that too.  Would have been a good distraction.  Getting him to our bed, not his, was on the menu though.  I was close to just making him a bed on the back seat.  Belt him in somehow.  A new item to bring, pillows!  My poor little bunny.  I hate revisiting this.  We need to stop this in its tracks or he is going to get full blown sick from it. 

I still cry. 

He recovered but has been tired.  He was running with his brother and had to stop and grabbed his legs saying owe.  Ugh.

October Infusion

These keep sneaking up me on quickly!  I can't believe it was already a month.  I have been storing our appointments on my calender, instead of committing them to memory.  At 2am I rolled over and for whatever reason decided to tap on my calendar to see look at the what time we were scheduled only to find we were schedule to be in Bellevue.  So glad I looked and didn't hop over the floating bridge to go to Seattle.

I was late.  Again.  The car wouldn't start.  You would think this would bring us to arguing and major stress but, what can you do.  Fix it if you can and go.  Thankfully it was the car my husband was driving to work.  We jumped it but back to square one of why it drained it self after not being used for a couple days.  Just put a new alternator in it.  Boo.

After getting it jumped, I ran back in the house to put dinner in the crock pot.  I so terribly hate coming home from an infusion ,  tired and hungry and emotionally spent, only to have to make dinner.  I hate dinner.  : )  But am thankful to have it?

So 15 minutes late but I just got a "no big deal".  I apologized profusely but they just looked at me saying,"its an infusion.  Your here forever".

The Taper Update
We have been rocking 1/2 ml to 1ml of steroid.  First three days I noticed he was a little tired.  I wanted to wait to see if labs were going to match what I was seeing.  They did come back up from last month.  I called and left a message from rheumatology.  I told them I was concerned he wasn't tolerating the taper.  They called me back.  Our doctor was not concerned.  His labs are still with in normal range.  Just higher.  As always I love the wait and see.  I told the nurse that an instinct level I wasn't feeling to great.  I told them I would however, keep a close eye on him.

INFUSION
Every couple months we have trouble with IV.  It was one of those months.  We had the same nurse as last month.  This was the one nurse who had success with his IV and celebrated.  This month we weren't so lucky.  After two trys, they paged an anesthesiologist.  He got it.  He was very aggressive.  Very official.  Scary looking because he was in surgery gear.  Gary surprisingly was very compliant with him.  He was use to having his patient laying.  He had blood every where and dropped the flush on the floor.  He was so surprised.  He went on and on about how his mind expected there to be a table to rest the flush on.  Lots of crying but Justin Bieber was on the TV.  Gary watched Never Say Never.  He hardly noticed he was getting an IV until the needle hit the skin.

Poor buddy had trouble falling asleep because the chair.  We had him turn around to sleep on it backwards.  The way home was hard.  He cried and cried because his head hurt.  He said he needed to throw up.  Hitting traffic is no fun when he feels like that.  As always his feeling turned to anger.  One minute I am his hero the next and I quote, "a big a*s*Ho**".  Well. Well. Well.  That's a new symptom. Do you wash those words out?

I treated myself.  I went and got a tall pumpkin spice latte from Starbucks.  The nurse said, "you look like you could use some coffee."  The infusion center was empty so I felt confident slipping out to the lobby to get one.  Is it pathetic I still smile about a latte I had yesterday?

I fear I feeling a little sorry for myself though.  Not a lot just a little.  And why should I feel sorry for me, its my son I need to feel sorry for.  But get over it and stand strong I say.  I am not alone in the battle.  But even my husband forgets to ask.  I told him his labs were up.  I was waiting to hear from the doctors.  He forgot to ask about the results of that call.  In all fairness,  I saw him for thirty seconds though.  Even though we have an infusion, cheer leading practice still happens.  I had to drop Gary off to him, and off running again.

Made with an app. Pic of Gary in middle during yesterdays infusion.

*Thank you to for the comments on previous posts!  I hope one day Gary will say, remember when that tasted funny.

THANK YOU

Thank you to our friends, The Morgan Family, for donating to Cure JM.  Our Scentsy Representative, Debbie Evans, held a party with Estela.  Estela donated the commissions to Cure JM.  A donation of a guests choice, Tina McGann, chose Cure JM.   THANK YOU THANK YOU THANK YOU.  I love huge hearts!

If you need anything from Scentsy, here is a link to buy from ORDER HERE

Thank you Debbie, Tina, and Estela.   Love your heart!

Clinic Check in Sept. 2011

Our clinic check-in went pretty good.  Doctors were running behind.  We were greeted by a new fellow who only knew of Gary by his name.  She didn't introduce herself.  She just began chatting.  I have to admit I wasn't in the mood to chat it up with a new doctor.  But I do like to hear myself talk.  Especially about a subject a know extensively.  As I updated her on the latest and greatest, she responded with, "I know you have struggled to get this under control."    It struck me I am don't favor the speaking with the fellows first.  I often tell them things, then forget to repeat them to our Doctor when she comes in.  Yesterday seemed rushed and chaotic.  I think it was because they were running behind, I needed to get back to work, and Gary was in no mood.  The fellow began the strength test.  As Dr. E entered she took over with the tricks she had established with him. He still was not cooperating which is frustrating.  I get distracted by his behavior, rather then going over the important things.  There were a few spots on his skin that I discussed with her.  She wasn't concerned.  The fellow repeated a few times about how difficult his case was and is.  We talked about his hoarse voice.  I think we are satisfied with trying to get it to resolve itself.  I guess.  Capillaries on his fingers,  a few fingers are almost normal.  I few are far from it.  I asked the doctor if that is common.  She said  yes.  One finger ok, the next not.  Don't bother with the why.  Strength is near 100%.  Gary was saying ouch here and there with his leg strength tests.  I told them I don't think that is a true pain.  Gary was giving there chains a yank.

Our doctor wasn't as excited as I was.  Pleased yes, but seemed cautious.  I am glad for this.  I appreciate her conservative approach.  Our first wean started last month.  The wean off was her.  Instead of every 4 weeks, we are not checking in every six weeks.  Our new taper is the small amount of steroid we are on.  We are going to rock that between 1/2 ml and 1 ml for the next six weeks.  In two weeks we have IVIG and lab checks.  She will also be checking T-Cells.  If they are back, we will run Rituxan again.   I felt like her head was full yesterday.  She seemed distracted and very busy.  She always expresses her confidence in me.  How they trust me and how in tune I am with him.  I appreciate that, but there is an immense fear.


So here we go with continuing the great taper.  We tried this taper last year.  It didn't last long.  Do things feel different this time.  I am not sure.  I think they do.  With methotrexate, cellcept, tacrolimus, enbrel, ivig, and rituxan and plaquenal on our side, just maybe.

Protected from JDM.  I make him wear this everywhere.  Protects him from injury and germs.  Just kidding.

None

There is no title to this because its not about Gary's disease.  Well, it is, and it isn't.  We are having a hard time right now.  Surrounded by blessings.  Definitely.  But fighting.  I am sure like a lot people are right now.  I feel like my hands are tied though.  We are scratching to hang.  Hang on to our house.  Struggling to even eat sometimes.  If it weren't for my family, I shamefully admit I am not sure I would be able to put a healthy meal on the dinner table.  My husband works hard.  But with all the price increases, it starting to hit us hard. We still are on financial aid at the hospital.  Blessing.  But even gas to get there has been a part of a strategic planning.  *Note to all children:  Be nice to your parents.  VERY NICE. Because even at 37, you depend on them.  I struggle with myself alll the time.  We can't afford to live in this house anymore.  I am torn and heartbroken at the thought of not being able to bring my baby home to his beloved house.  His beloved playset.  The neighbors.  So easy right.  I get a full time job.  That is what we need.  We need double our income to make everything ok.  Poisonous dilemma number two.  I get a full time job.  What do I do with my baby with no immune system.  Drop him in a day care?  I feel like that would be dropping him in a war torn germ country.  It makes me feel neglectful, bad, and sad.  I want to rise above this.  There is a way. He knows our needs.  I just wish I wasn't so very human.  Car broke down.  Ipod broke down.  And broke my 45 gallon fish tank.   Perspective is my friend right now.

"I'm not sick"

"I feel fine Mom.  I don wanna go to get pokies.  Tell dem Mom.  Tell dem I all done now."
"Da evereebodee get pokies Mom?"
"I all done with this. I not sick"

Someone is getting older.  I see retaliation in my future.  I sure hope the disease is done because Gary has inside information that his 2 and 3 year old mind could not grasp.  The good news is his labs were beautiful yesterday.  No signs of anything, well besides calcinosis and few cuticles that look grubby.  We have had a few things I was keeping an eye on.  A few spots in his arm pits were looking vasculitis.  But hasn't done anything so I felt better.  Calcium deposits have not increased, no new ones, so that is good.  All in all I love the trend we are on.  I am really looking forward to our clinic appointment in two weeks.  Which med gets lowered first? : D

I so look forward to the day when he doesn't have to take any of this.

Our infusion went great.  Nice and smooth.  I gave him his sedation.  No vomiting, just heavy tears for the IV start.  I gave the nurse the honor of starting his IV.  I told her he is not a hard poke anymore.  He once was because of the steroids but he rarely gets poked more than once.  She did it.  IV team has been doing it every time for 2 plus years.  I heard her celebrating at her desk with the other nurses that she did it!  Giggles.  She did a great job too.   A little to much tape but she put a big IV in since we were going to be there all day.

Gary had the whole boat this time.  Methoprednisone, Pamidronate, IVIG, Methotrexate, Enbrel, benadryl, tylenol.  It made for a long ten hours in the infusion clinic.  As much as he is started to grasp the concept of all this, he still doesn't.  He sleeps through the infusion, not by his choice.  Once he wakes up, the game has started. Instead of saying, "I don't feel good",  he just screams.  Cries and screams about everything.  The ride home was like a violent sea for him.  I constantly was instructed to roll the windows up and down.  He tried to sleep.  He tried to stay awake.  When we arrived home, he just wanted to play.  I think instinct drives him to do the normal thing.  He just wants to not acknowledge however it is he is feeling by playing.  But even a glimmer of stimulus like throwing the ball wrong to him and he goes into hysterics.  I try to get him to come inside lay down.  Makes things worse.  He doesn't care if the sun is doing down.  He needs to play.  My friend Summer gets the medicines that Gary gets.  A doctor recently told her the medication she gets "isn't that bad".   I beg to differ.  I want to slap in one in the face with my "differ".  My son is not this child after getting these drugs.  He is a much kinder, fun-loving boy.  He goes away when the medications that keep him healthy enter his vein.  He screams and hurls insults, in the same sentence breaks, then screams he sorry and he loves us under sobbing tears, then back to the threats and pain.  So yes, these medicines may not be the worst, but they are that bad.

A friend wrote me how great Gary looks.  I couldn't agree more : ).  We have been here before, when things seem to turn a corner.  He gets this angelic appearance.   Still with all the stuff he is on, preschool will have to be at home.  We did have a run to the pediatrician 2 weeks ago because he was having trouble going number one.  All was clear though.  Just irritation.

*Other Children.  School is in session.  They fell back into there routine nicely.  Gary misses them.  Our family eats dinner after 830pm almost every night.  Trying to keep the siblings active and heathly while juggling all the rest like running (which I haven't done in 3 days now), house keeping, working, cheer leading, not paying bills (lol), and tracking school progress, I feel like just staring at the wall for awhile.   Like that song says, "I don't feel like doing anything".  Oh but putting on my chemical suit and cleaning the bathrooms in this house.  Yucky.