Make A Wish Weekend: Closer, closer, almost there!

It was a muddy, rainy set up this weekend.  Thank you to Grandpa Gary, Uncle Ray, and Brian & Chris from Apollo Sunguard for working so hard.  Gary was excited!  I think however, once he see's it all come together he will be over the moon.  Gary is doing very well after his infusion of pamidronate.  He seemed to recover.  He has gotten the occasional head ache but other than that.  I am not sure how long it takes to see if it is having any effect of the calcium deposits.  I can't find where it says that.   I would call the doctor and ask but I am pretty sure I will just get a "I don't know".   Here is some pictures this weekend.  April 17th is our Make A Wish party.  I am waiting to here what time and everything.  If you know me, and know Gary, you are invited!  I want my world there to help me say thank you to everyone who made this wish possible.  A lot went into it.

Pamidronate Infusion Complete

Gary slept and slept through the 2 hour infusion.  He had no reactions.  They did not monitor him as closely as I thought they would but I suppose they know what they are doing.  They gave him benadryl and tylenol just like they do with IVIG.  I carried him out to the car.  We were both grumpy.  I had to wait in the registration line to get my keys from valet.  Holding a drugged up 4 year old with all of our stuff and standing in a line put curse words in my head.  Oh how I would love to be a Miss Goodie 2 Shoes, but a las, I am not.  I found myself wanting to yell out, "really people,  I just need my keys, don't you think this is traumatic enough?!"  And then I realize who I would be saying that too.  Everyone else around me with children who are at Children's hospital?  I was highly irritated by the employee's, one sitting and the other talking.  Having a conversation, watching me desperately hold on to my four year old who was pale white and sweating and crying on and off. God let me be more considerate if you place someone in that situation in front of me.  Tell me to help!

We finally made it out to the car after getting through the line.  Gary was crying but fell back asleep as soon as we excited.  We pulled into our driveway and all the family stood around the car.  It was like being at the zoo, waiting for the aggressive attack animal to wake up.  We opened the door and he screamed for nobody to touch him.  He cried and cried. He yelled he hated us all.  He finally let me pick him up and carry him inside to the couch.  Auntie came over with a large plate of peanut butter cookies.  Cautiously she handed them to him.  He stopped and sniffle gasped, and glanced at her and quietly uttered, "sank u".   He ate the entire plate.  By himself.  I paced back and forth thinking, any minute that plate will be coming back up.  It was a lot of cookies.  But he didn't skip a beat.  He recovered and is doing well this morning.

Now lets hope this stuff works!

He continues to complain about his ankles hurting when he runs.  It's not constant but stops him, he yells out, OUCH!  Then keeps going on like the true four year old would.

Gary has been experimenting with the word "hate".  I don't like it but I know it will pass.  Last week the dog poo poo'd on the floor.  Once the smell hit Gary's nose he sniffed and goes, "whas dat mell?  oh dod! whas dat mell?!! I hate myself!!!  I hate myself"!  I can barely type this because it was so funny.  It is so fun how they are not sure what to do with words right now and when and where things are appropriate.  All's he knew is something smelled bad that made him hate himself.

For my Summer!

Make A Wish Update!  We are so so so so close.  This Saturday the cover is going up.  Our final build date and dedication is set for April 17th I believe.  I wish I could do a Live Web Broadcast. Hmmmmmm.  Think think think.  Maybe I will see if I can figure out how to do that.  Anyway, here are the latest pictures

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March Infusion

So I didn't like our nurse this time, but that's ok.  She knew everything, I knew nothing.  This was suppose to be our first pamidronate infusion but it was cancelled.  God orchestrates.  Our nurse was not complacent but not, responsive.  She was very good with Gary, but lousy with parents.  I asked her 4 times,  4 times right to her face, what medication are running first?  For a second I thought I had died in a car crash on the way to hospital and my spirit was asking her because she acted like she didn't hear me!  When I finally made first contact, (no introductions) she said we are doing IVIG first because it is here.  I told her I prefer that the pamidronate is run first because it was the first pamidronate infusion he has ever gotten.  "IT IS???" she said.   OH boy.  This can't be good.  I have had nurses in the past who ask about his history so they know.  I found her to be a little arrogant and complacent.  I am not trying to be mean but I was so relieved when the pamidronate was cancelled.  It was cancelled because Dr. E came over to check out a rash Gary had had for 24 hours.  It was all over his arms, chest and face.  It itched a lot.  Enough for him to itch his skin off in spots.  I loaded him with benadryl trying to help but it didn't really help.  Dr. E did not want to introduce the pamidronate because if he happen to have a reaction, it would have difficult to distinguish which was what,  rash or reaction.  I thought it was for the best since our nurse didn't take the time to get to know our history.  She was my opposite nurse.  She did a fine job but I just didn't prefer her.  She suggested everything opposite of me.  Gary likes cool wash cloths for his arm especially when the benadryl is going in,  she wanted to give a warm pack.  She explained the reason but I didn't give a crap. ATTITUDE? ME?  Our two year anniversary is coming so forgive me if I think I have learned a thing or two in the past couple years.

There were a lot cancer patients in the infusion center.  Loud vomiting behind what seemed like every curtain. I don't mind it at all.  They need to do what they need to do.  Two other things that bothered me were during the day two four year old girls came in across from us for infusions.  I don't know what they have or why but they both had IV's started.  The first girl whimpered at the most.  The second was poked 4 times without a peep.  What the heck.  My son screams like he is being murdered.  I am concern he is suffering not only from juvenile dermatomyositis, but a post and pre traumatic stress syndrome, if not both.  : (

I have wonderful support from my family.  My sisters are so great and understanding.  It is hard for my husband and I to connect on things.  In bed, not talking, I finally laid it on the line what was going on with Gary because he didn't seem to understand.  He understands now.  I know he is trying to keep the walls up in this house and paid for, believe me, I look around worrying about how to pay to the mortage, all the while wondering if my son will make it out of all this a healthy adult.  My neck is tight and I have regular kanker sores visit my mouth as a result of stress.  Stress of keeping my child healthy and stress of making sure he has a place to live and food to eat.   Rut Roh.  I think I just did an emotional vomit on blog.  It is hard when you have to live with your spouses decisions.  He decided to be a coach for our oldest son's team, which is awesome. The other nights he umpires to earn a little cash.  He isn't home until at least 9pm every single night.  This is on top of his full time job he puts his heart and soul in too.  So not taking anything away from him but.   Some of those nights are not supporting our income.  Why don't I get a job then.  I think I would like it but I need to be on my game with Gary.  We are at the hospital often, and sometimes it is days in a row.  I have tried to hold out so I could be here with him but oh the weight of it all.  My husband is a great person but I think we need to re-prioritize things.   I know this is airing out the laundry so to speak but I just wanted to share so maybe other families could relate.  I am so thankful we are together and I have my parents and my sisters.  I think I have been struggling with a small amount of depression.  It may be a grieving thing again with the news that Gary's calcinosis is threatening his feet and possibly the way he walks and signs that this disease is still dripping like a leaky faucet.

I called today to try and get his orthopedic appointment moved up.  Dr. E mention that if I wanted to be seen sooner for his toes that she could help pull some strings.  This morning when he woke up, I notice the toe joint at his foot looked larger and the toe is turning in more aggressively.  I called and threw my help line out.  I think that Gary has quick process with his disease.  When something new presents itself it doesn't take long for it proceed with damage.  I think that if there is a chance to avoid any kind of invasive correction for his toes, such as surgery, we should put that into action and avoid it at all costs.  Hence the getting in sooner.  I don't want another month to go by and see what his toes are doing in another month.

I do believe you have just read a VENT.  Nuff said.

And the Calcinosis is starting to cramp our style.....

After our clinic visit last week on Wednesday, the doctors last words to me were, "lets start thinking about pamidronate infusions."  Okay.  I am good with just "thinking" about it.  Thinking and doing are to different actions.  I can think about running, but that is not going to give me the action of running.  So the scheduler calls me and says, "Looks like we have a list of appointments we need to make."    Uhhhhhh,  ok, whatever you say but I only have one I need to make with you.  I just needed to make a clinic appointment for April.  She started off by asking about X-rays that we had already done.  I was instantly at ease because I knew she was looking at old orders that had not been removed from his file.  My ease lifted instantly and completely disappeared when she then asked about his EKG.  "For what" I asked in a monotone voice.   "Looks like for his next infusion they are going to start............", she continue to decipher notes.  "Pamidronate infusions."    I instantly stumbled over my words, lost my breathe a bit but maintained and explained to her that I wasn't aware this decision was made.  I further explained that has a mother I need some processing time.  Especially when Gary first presented with calcinosis, pamidronate was something they didn't want to do.  It was explained to me that Gary was still growing.  They do not know what this particular medicine will do to his bones while he is still growing.  I can pretty much answer my own questions.  The fact that the calcium his now increasing it outweighs the risks.


The scheduler asked if I would like to be transfer over to talk to a nurse about it.  They called me back an hour or so later.  I explained I wasn't aware that "thinking about starting pamidronate" meant "doing pamidronate".   She asked me what questions I had.  I explained that I need to go through this because I was told it wasn't something they were in favor of when Gary first showed calcium.  I asked if it was the x-rays of his feet and ankles that pushed them to make the decision.  She said the notes did say  he has calcium in ankles and feet.    Ok.   Not much help but I already know the logic behind it.  I hate it but I know it.  I assume that at this point the calcium might start to interfere with his ability to walk properly.  I don't want to assume that it is the calcium that is making his toes cross but it would make sense.


The doctor called me later that afternoon.  I just am...................twirling and dizzy........am I not remembering conversations properly?  Is this a accent thing?  I do admit I struggle with foreign accents but our doc has a fun, easy to understand acccent.   So nooooooo.   She started by saying she understood I was having second thoughts.  "the last thing you said to me was, 'lets start thinking about'."   So I am figuring out we have misunderstanding in communication.  I asked about the xray.   She said there was influx of calcium but its not on the bone.  That means this: Calcium influx in nonexcitable cells regulates such diverse processes as exocytosis, contraction, enzyme control, gene regulation, cell proliferation, and apoptosis.  I would love to explain but HUH?

This is not Gary's xray, but an example of what calcinosis can look like.

I was in the middle of getting ready to take Gary for putt putt golf for his 4th birthday.  I could sit on the bed and stare.  So we are headed out for an EKG this afternoon.  After doing research on Pamidronate, I feel a little better.  I have read "DO NOT USE IN CHILDREN" but they do.  It comes with all the standard warnings.  We will have to return on Thursday to check his electrolyte levels.  Apparently it can dehydrate you and can be rough on the kidneys.  All the other medication he has gotten have wonderful warning as well.  There have been 3 or 4 patients who had success with completely reversing calcinosis. So here goes nothing, something, ?   There goes my sanity.  : (   .  . .. ....    


And this all went down on his birthday.  Thank you God for making him oblivious.  Thank you for letting him  be able to enjoy it.  Thank You for giving us the chance to make this work.  Now, lets keep him running around those bases.

Happy 4th Birthday

Facial Swelling

He looks uncomfortable but he was just concentrating on cartoons.  He seems to be really heliotropy (new word!) The swelling improved as the day went on.  It seems to return just before bed time.

Looks like his toes are flipping you off!  Love this one.  Monkey Toe's.

Clinic Yesterday, Top of the Day to You, Hap-E St. Patricks Day

Summer~Thank you for always taking the time to comment and blog hug me. : )

So yesterdays appointment was a little tough.  The up's and down's of JDM, in full swing.  "How is Gary doing?",  "We have a good days and a few down days."   Yesterday was a realization day.  Gary's appointment was originally scheduled for April 5th.  Since his toe's decided to cross, I went ahead and moved it up.  Our rheumatologist explained that she didn't have an answer unless she could see the toe's.  I told her I understood.  It did drive me crazy,  crazy enough to look it up on internet, call the pediatrician, and went him bought him new shoes.  We started out by talking about the usual stuff.  Gary has tummy aches and quick visits to the potty with stomach cramping.  She got on with the examination.  She felt around in his toes to see if she could feel anything that would be making his toes cross.  She couldn't feel or find anything.  I told her his calcinosis has not changed in some area's, gone down on his arm, and had a few new ones I felt in his bottom.  She looked at his nail folds and did note she noticed slight change in a few fingers.  Gary's capillaries on his eye lids are very purple pink and prominent right now.  That is from the JDM.  She wrote orders to have xrays of his feet and ankles.  Early May we will have a consult with a orthopedics to figure out the toe's.  My least favorite part of the appointment was when she brought up the image of his xray from last month of his wrist.  There was no fracture or break obviously, but there was calcinosis.  Calcium deposits all through his fore arms ranging in different sizes.  All mostly small but surprisingly quite a few.  We knew he had calcinosis but I don't anyone realized just how much was actually there.  I looked at the xray and said, "oh bummer" in utter disappointment.    I asked if she thought we are ready to go down on prednisone like she brought up at the last appointment.  It was clear the tables turned.  Last month I wasn't feeling good about where we were with everything, and she was more enthusiastic.  This month, I was trying to be enthusiastic and she was being cautious.  She feels he still isn't good enough to go completely off steroids.  He is on such a small dose (1ml) which makes me wonder if his body even recognizes it.  But it must because last time we tried to taper it didn't go well.  "Let's not rock the boat," she explained.  Again.  As we wrapped the appointment up she sort of cringed and told me to start thinking about starting a medication called pamidronate.  When Gary first developed calcinosis, it wasn't even being considered because of his age and his bones are still growing.  I did find a report of 3 cases where calcinosis almost completely reversed or dissolved after pamidronate infusions. Which is encouraging but 3.   A whole whopping three.  But I guess its something.  So I cried while I made dinner last night lol.  I tapped into my emergency bottle of wine, lol.  Need to replace that because I will need it for tonight too lol.  Until I am over it and have gone back into recovery mode.

Wednesday Clinic Appointment

We have an appointment this Wednesday.  Gary is doing really good.  The Rituxan treatment he had in December seems to be kicking in nicely.  I assume this Wednesday we will try and continue the steroid taper.  We are only on 1ml as it is but I approve tapering completely off.  Gary's toes are still crossing but we will have that checked out on Wednesday.  He constantly complains of his ankle hurting.  However, he runs, jumps, and plays on it with no problem, except for "owe" my ankle hurts.  Dr. Mom, (thats me) is a little suspicious with the crossing toes and ankle pain.  He also has the occasional knee pain.  As far as disease activity, I am pleased.  But I think the pain, funny looking toes, funny looking ankles and knees make me think calcinosis.  I am hoping it is not played off or ignored on Wednesday.  I need to be on my Mom game.  I would like him to be evaluated for............ummmm.......I DONT KNOW JUST FIX IT.   Ha ha  think I have been feeling that way for almost 2 years now.  If it is calcinosis in his joints, I am not sure they can do anything for him.  I just hope it doesn't get debilitating effecting the way he walks.  At this point we are far from that.  He runs runs and runs just fine.  It's mostly when he is standing and goes to make a small shift in weight he says, "owe my ankle".  The other day he came over to me and said, "pop! and pointed to his ankle."    It could be something is tight, and alls we need is a little physical therapy.  Hopefully we will get answers or recommendations on Wednesday.  I made sure as soon as pay day hit,  we went right to Nordstroms and bought him a pair on good shoes.  I didn't care how much they were going to be.  I have always been fond of the Stride Rites for toddlers so we got him a pair of those.  They have plenty of room in toe box.

Calcinosis
Good news I think in that part of his world.  It has not increased in size.  He did get a few new ones in his bottom area and on the back of his knees, but other than that the other sites of calcinosis have not changed.  They one on his arm has significantly decreased in sized and the inflammation around it is gone.  I was very happy about that.  I thought for sure that it was going to burst through is skin.  It's encouraging.

DENTIST
So he does have a few cavities : (  But they are shallow.  He did an excellent job at the dentist.  Surprisingly cooperative!  They are going to fill the cavities at the end of the month.  Give him a little gas and see if we can take care of those without having to drill to deep.



Make-A-Wish

It's happening.  It's finally happening.  Our family is so excited.  Gary is so excited.  In a few short weeks, Gary will be happily playing on his sun safe Rainbow Play System!  I will be inviting the world to his dedication party in April!   The volunteers are amazing!  They worked all Saturday in the rain.  Our Make-A-Wish Go-To Gal was there the entire day.  She brought donuts and sandwhiches, even fed our family.  I pray God Blesses these people 10 fold!  They deserve it.  I will keep everyone posted.  We have to pass a few inspections this week.  Then they are going to pour cement.  My backyard is a crazy muddy mess right now, but it is all good.  : )  No complaints here.

Gary was woken up early to find something magical happening in his backyard!

Make a wish my baby!

Birthday

Gary has a birthday coming up.  March 21, he will be four.  Wooops, I think I accidentally BLINKED!  He already received a gift.  His Uncle Ray and Aunt Amy signed him up for is first ever T-Ball Baseball team.  He literally glows from the inside when it is mentioned.  You can actually see heavens light surround his body in excitement when he says, "my team Mom?".   Absolute beauty!  In honor of baseball season I changed his blog to baseball.  His big brother McGuire is also playing on the team his Daddy is coaching.  Elexis will be doing cheer leading as well.  Single income.  Gulp.  God is good and he knows what we need : ).   . .   .

Cross your fingers, cross your legs, but your cross toe's??????

Who knew?  There is actually a condition called Cross Toe's.  It sounds like no big deal.  If my toes were crossing, I probably would get a giggle.  But when you child has a disease that involves inflammation and has damaging side effects, it tends not to get a giggle.

TRUST
I trust the Lord.  I trust my parents.  I trust my sisters.  I trust my fish.  I mostly trust my wonderful husband.  I mostly trust my children.   I don't trust myself.  At the age of 35, I am still learning about me.  What a wonderful thing.  I have been looking at Gary's toe's for 6 maybe 8 months now.  Something didn't seem right to me. I couldn't point it out or say, "hey look, that doesn't look right."   You know, come to think of it, I do remember once or even twice mentioning it but was told, "looks fine to me".   So on my way to deal with everything else that is loaded into our pipe.  (Yeah, that's right, I gotta pipe, so do you, metaphorically speaking of course).  The past few months Gary has been getting foot cramps.  Everyone gets foot cramps.  My daughter gets them.  I get them.  For the past two weeks, Gary came down with a case of athletics feet.  We have been putting anti-itch cream on his feet.  It keeps him up at night.  It seems to be getting better.  The past couple days, Daddy and I noticed his big toe is starting to pull over.  His second toe is resting on top of his big toe.  It is only happening when his foot is at rest.  Although  I saw the toe's crossing when he was standing on it.  He doesn't complain about it.  It doesn't seem to hurt.  I went on-line to look it up.  See if it is something we needed to have checked out.    After reading, the causes kind of made me think, "wait a minute."   Inflammation, muscle weakness, shoe's, destruction of a joint, tight calf muscle's, ect,.   I went ahead and called rheumatology.  They said, "yeah yeah, we will take a look at it when you come in next."  Ok.   Oh. Wait.  No.  The websites say no to let it go, because it could stay that way.  It can be corrected with shoe's and other means of manipulation.  If you let it go, surgical correction may be necessary.   Hmmm. So I am not going to call 911 over toes but still.   When I noticed something funny, I did consider calcinosis in the joint.  He has widespread calcinosis so it is possible.  I consulted with my JM Mom's and sure enough there is a Mom who posted right back to me, who said, "weird your posting about his, Rachel's toe's are doing the same thing.  She also has calcinosis in her legs and feet".   The calcinosis on the back of Gary's knee's have increased.  It makes it look like his knees are turning in.  I suppose we will keep an eye on that part.  But until it effects the mechanics of walking, there isn't much to do.  You get to wait and see.  That is so fun.  *I am fluent in sarcasm*  He has been complaining here and there about his ankles.  First thing in the morning and once in a while randomly.  His ankles have been an on and off issue for awhile now as well.  I think we have even had an x-ray done I think at one time.  Months ago.  So don't worry.  I didn't stop there.  I called his pediatrician.  See if he had any input.  So we will see.

Crossover Toe

KISS RADIOATHON AT CHILDRENS

CLICK HERE to listen live.

Today is the ratioathon for Children's.  I remember last year sitting in the cafeteria listening to them.  

Feb Infuse

We had a another infusion.  Labs look great.  Gary is doing good.  This infusion was a little rough.  The benadryl and tylenol wore off at the end of the infusion.  He started crying and got those little red hives on his chest arms and back.  The steroids are making him unpleasant.  I got socked in the nose twice yesterday.  What can you do.  

This is the part I am surprised hasn't come sooner.  The part where this whole thing isn't new to anybody.  The part where everyone seems to go on with things.  The part where it becomes normal.  I don't want it to be the normal but it has too.  It's amazing to me the emotions I go through STILL with all this.  I still want to feel upset especially when things change or after an infusion.  It's the part where you yourself to battle through.    When life goes on.  It feels like going to the doctor, and accidentally being left in the exam room.

CLINIC/X-RAY's/Hate JDM

We had our clinic appointment.  I love my blog!  I don't care if no one ever looked at it.  I mean, it is nice to keep everyone updated but really this is an outlet for me (in addition to running, wine, and talking to my sisters).  I saw someone had posted that people keep blogs to make themselves think someone else cares.  Well, so be it :)  LOL.  I instantly laughed at that remark.  Life is a matter of perspective.   If you can't see perspectives, life tends to be a bit more difficult.  That comment was made by a person who most likely has never been in a situation that solicits hurt or difficulty with there children.  There is a desperation that comes with the process of dealing with this.  The desperation to get rid of the feelings that twist our hearts as mothers.  Ok blah blah blah
s o r r y  Speaking of heart twisting.

Gary has been good.  ( I think I say that every time in effort to paint the full picture )  Gary had another good response with Rituxan up until about Monday.  I was ready to go in to the doctor to say, "I think we should lower down on the steroid again, he has been doing great."  Sunday, however, I noticed he was wearing purple eye shadow.  For a split second I began to search for a particular color in my make up to see if it was there.  Then I stopped and looked closer.  That's not purple eye shadow.  I asked him if he "bonked" his eye.  He said no.  HELIOTROPE  A rash children with JDM get.  A rash he has had before and it's back.  His cuticles this past month had been great.  Before you could see with the naked eye capillaries that were bursting and bending. They were looking beautiful.  I couldn't see a thing.  Until Monday morning.  With just a flash light I could see activity again.  The roof of his mouth has a few purple dots as well.  Monday I was upset and anxious after discovering this.  I couldn't wait for Tuesday to get to his appointment to speak with the doctors and share my frustration.  It lifts you high when you look into your three year olds face and see that normal boy.  No signs of a disease.  Then in one day to turn around to see that face going away and being replaced with purple and inflammation.  The very thing  we keep fighting and fighting.  *If our doctor ever finds the way to my blog, I don't mean to offend anyone* BIG BUTT, I didn't like what she had to say.  I don't agree.  She said she thought his cuticles looked better.  She even handed me the light to look for myself.  I HAVE SEEN THEM!  I took it and looked and thought they look like CRAP.  So the whole twist to the appointment was that Gary has sprained his wrist the night before playing with his brother and sister.  He get complaining and complaining about it.  We were sent to X-Ray because he was getting more and more uncomfortable.  So we wrapped up the appointment and got down to X-Ray.  Just a sprain : ) I am left with rationalizing everything.  I don't know what is causing me to so very frustrated.  We are still a few months off from hitting 2 years worth of treatment.  2 years is not guaranteed.  There are patients who are on medications for years and years.  It's funny you go along fine.  "How's he doing?"......"Really good, thanks"......Then like my sister said to me yesterday, some days, its like I am finding out for the first time.  Like yesterday was the first day I found out my kid has a disease.  I know it is from going along saying "shruggs" we are getting use to this now.  We except it is apart of our life, and we just need to deal with it.  NOT TRUE.  It will sneak in and shove you down.  I trust God with all my Heart.  I trust He gives me these feelings so I am the best that I can be.  If I didn't feel and deal, Gary would be at risk for not getting the care he needs.  I would to sit there and argue with the doctors.  But there is no use in this strategy.  The doctors are human.  Gary's disease and his body are going to do what they are going to do.  *Razzing* the doctor and arguing doesn't get anywhere.  I do advocate but that is a art form in itself.  There is a time and place for everything.

CALCINOSIS

Still has it.  The large one on his arm has gone down finally.  It is a small lump now instead of a large one.  I think that if they could see all the calcinosis through out his body, they would be surprised.  No one takes the time to really explore it because there is nothing they can do about it. 

IVIG Infusion January is in the Books

Gary is doing good.  We had our infusion yesterday at the Seattle Campus at Children's.  I went ahead and tried the sedation again,  one more time.  I was curious to see how it went.  He slept.  A lot.  Lately, sleeping as not been something he does a lot of.  So when the lorazapam hit me, it worked well.  We slept thru the whole iv prep.  We thought we were about to get an iv while he slept but as soon as it hit the skin, he woke up.  Unfortunatley I didn't have a good hold of him.  Our nurse, SUPER GREAT but pregnant with twins due next week.  Hello?  She tried but she was challenged with size.  The size of herself that is.  He jerked back pulled the iv out then it quickly went in for a 1-2 poke.  It was a no go.  The nurse went past the vein because he was jerking back and forth.  We tried the other hand, nothing.  She finally got it in the crook of his arm.  I thought about it afterwards.  How would I like to wake up to someone poking a giant needle in the back of my hand.  Well,  I wouldn't, and would most likely be pretty ticked off.  So after 3 or 4 pokes if you count the first poke as two, we were rolling.  He went into a coma.  He slept through the whole infusion.  It went smoothly.  Woke up hungry, and grumpy.  On the way home, he had a serious chocolate fit.  MUST HAVE CHOCOLATE.  I actually had to stop and get some.  He deserved it.   His labs look great.  His clinic appointment is Feb 8th.  His hoarse voice issue seems to be backing off.  His thrush is getting better but very slowly.  The nurse said I should check back with the pediatrician because we have been treating it since Jan. 4th.  It is better however, so in the next few days if it doesn't improve further, I will give him a call.  He did say at his appointment however, 'as long as it takes'.  Gary does have a cough that returned but I don't think it is really serious.  Post nasal drip and a cough.  The calcinosis on his arm has changed.  It is less angry and going down but I am not sure what to expect or what it even means when it does that so we shall see.

You're Beautiful Today (Erin's Song)

Not Again

Just last night has we sat in the parking lot of a walk in clinic for Daddy who has a nasty nasty case of bronchitis, I was sitting there thinking I was glad the Rituxan seemed to stop the weird bouts of tummy bugs or what we thought was a bug.  I thought to soon.  Hours later, as if Gary's was trying to tap into my maternal conscious to tell me he was going to throw up all over my bed last night.  I got the wrong sub conscious message.  I am so very tired of everyone being sick.  Elexis had a run in with fifths disease.  Turns out she came down with  pneumonia.  Daddy has been hacking and I truly can't remember what he even looks like because he is always in bed.  He even stayed home from work today and he never does that.  I have managed to not pick up anything I don't recover from quickly.  I am sure my turn in coming but I plan to keep battling back with running to  "run away" from the germs.  I have been bathing the house in bleach.  I will continue the great germ fight.   So back to the barf.

Nov. 13
Nov. 16
Dec. 9
Jan. 10

Stomach cramps and vomiting.  Nothing from down under however this time.  Just bad tummy cramps.  What is odd is that Gary isn't in preschool.  I know the kids go to school and can bring stuff home but wouldn't they bring has in getting it first, then passing it to him?  The dates are all around the same time of the month.  I got it!  It's menstral.  Oppp, three year old boy, not possible I guess.  Huuuummmmm.  Allergies to food.  Well lets see yesterday he had mixed nuts, blue berries, celery, peanut butter, a small snicker bar (nicka bah), refried beans, brown rice, corn chips.   I do not recall what he ate the other dates,  but for documenting purposes I will start for the next time it happens.  I suppose I should keep a daily food journal.  Now, I could call the rheumatologist and let them know it happened again.  I don't think it is necessary just yet.  If he didn't recover so quickly (by morning), I would be more concerned.  But since he woke up and asked for a tuna fish sandwhich and hot cocoa, then I would worry more.  But then again, that makes me worry more because if it was a viral thing he would take longer to recover.  It clearly is his stomach cramping.  Because he cries and tosses and turns, then barfs, repeat throughout the night.  I really don't want him to have some invasive test that won't show anything.

New Year: Dodging sickness

We have seen the pediatrician more than once this week.  Gary came down with thrush.  Rheumatology said to take him to his regular pediatrician, whom I love!  Then Elexis was in last night.  We had separated Elexis and Gary because Lexi was exposed to Fifth's disease.  I mentioned this to our doctor.  He advised if it was possible to keep them far apart.  So Lexi has missed a whole week of school.  She stayed with her Aunt and Uncle a few days but starting getting worse.  We were concerned she was showing signs of getting Fifths disease, but it actually was walking pneumonia.  Now she is under quarantine in her room.  They put her on a mean antibiotic and an inhaler.  Of course when you tell her three old brother to not go in her room, opposite day is in effect.


CALCINOSIS

So this is what calcinosis looks like.  It only hurts if it is bumped or if he is putting on a jacket.  It was funny he let pediatrician mess with it.  He was strangely cooperative for him.  He is getting more on his bottom around his tail bone.   I don't post these to make anyone feel uncomfortable.  I do it to show other families what to look for and to document.  I wonder if this was actually a molluscum until I got onto another families site.  It look exactly like their daughters calcinosis.

 

A New Year

What a year!  I can say it was full of blessings.  We are looking forward to this year as well.  Christmas was wonderful.   I mean I must have been a really good girl!  We had our infusion a couple days after Christmas.  It went good.  We got our own room because Gary has had a cough for awhile.  Poor guy had to have a nasal swab,  and chest xray to check for viruses, ect,.  He was in the clear, but at least it got us our own room.  The nasal swab was pretty bad.   They stick a small tube to suck out mucus from your sinuses.    Ouch.  Gary responds very well to the Rituxan.  He looks beautiful.  He does have a calcification that is coming thru his arm.  It started several days ago.  As long as we don't accidentally touch it, its ok.  I hope the rest of it doesn't start doing that.  That will be tough.  I can't believe in 3 months Gary will be 4 years old.  He is turning into such a boy.  I am so grateful for God's protection and blessings he gives us.  This year we are looking forward to stepping closer to remission. 

Pictures from Christmas

Merry Christmas

Merry Christmas to everyone.  The Rituxan went good.  Gary didn't seem to have any ill effects from it.  We are scheduled to go back in for our second round on Monday.  Gary will be there overnight.  Hopefully we will get our own room, but most likely not.  Last week it was interesting.  We got check into our room and the patient that was already in there immediately complained.  I was a little shocked.  I told our nurse, who I could see right through and knew right away when that mother popped up out of her bed and headed straight for the nurses station that she was going to protest.  Her daughter was older (13 maybe).  I get it.  Gary is chatty.  But the part that floors me is the less than ideal rooms we have been put into over the past year and half, including being accidentally stuck in with a contagious patient.  I would express my displeasure, and not once did they move us. OK once, it was when we were in with the poor kid who was having loud psychotic hallucinations about The Grinch.  That time I didn't ask they just moved us.  I so badly wanted to ask that Mom what she said.  I also know however, the nurses were not happy with her.  It came up several times because we moved rooms certain things were still back at the original room.    Anytime it was mentioned a certain regard came off of each nurse.  The upside was we did get our own room for awhile.  We also had a window.  Down below our view included the Seattle Fire Department practicing drills on the vacant condo's below.  Yay for the Children's Hospital Expansion!  I pray that no patients will have to share a room again.

Gary is looking pretty good.  I thought earlier in the week that some of his calcinosis was coming through his skin but it ended up being a infected molluscum.    I do think it has calcinosis under it but I was kind of upset there for a few days wondering if this was the start of the pain of these popping through.  The dermatologist has stopped treating the molluscum.  He did recommend trying an online remedy, Molluscum Rx.  It's a little pricey so I am not sure.  One of the things I have started to consider is a gluten intolerance.   I struggle with this because I do.  It will be hard.  But I figured I will talk to the doctors and see what they say.  I guess the reason is because so many times I have been offered advice about Omega Three, fish eyes balls, things of that nature.  It has all been taken with appreciation. However.  This disease is serious.  It can be compared to cancer in my opinion.  My mind is closed to any kind of natural care and things like that.  What if I did and his disease advanced?  What if it didn't work?  There is a person on a support board who is always pushing some kind of product.  He pushes it to the point it is offensive.  Asking us parents 'how dare we not explore other treatment and put the terrible drugs into our childrens bodies when he has found something that works', not a direct quote but it is how he made me feel.  What if we all followed what you were insisting on?  This disease proves that no ones is the same.  Each case is a little bit different.  Each patient responds differently to each medication.  I understand you would want to share what worked for you.  I would too.  But to play upon the fear in parents is crude.  And what every patient did what you are so passionately pushing or "selling".  I can guarantee a lot of children would have disease progression along with all the complications that come with JDM.  I suppose it is all about approach.

I know I need to open my mind more.  I also consider that fact that this isn't my body.  It is his.  It's Gary's.  It may be a little different or maybe something I would try if it were my own.  But Gary would have to live with whatever decision I make for him.  He already does.  What hard way.

We are blessed : )

Merry Christmas to you!

Merry Christmas Summer : )

Rituxan is Running

The back to back stomach bugs aren't a good thing. Obviously.  They had us come in today for a clinic appointment this morning.  It was decided on Friday to go ahead and run Rituxan again.  So we are here overnight getting a Rituxan infusion.   Labs don't always tell the whole story.

Christmas is almost here?

Ring Bearer at Aunt Amy's wedding. 

Wow time is marching.  We had our clinic appointment last Tuesday  and our IVIG infusion the next day.  The clinic appointment went fine.  We are keeping all medicines and doses the same for awhile.  I would describe it as a holding pattern right now.  Just waiting to see what happens.  The doctors and I agree.  Not good enough to stop steroids.  The inflammation is just there still.  Despite really great labs, I can't confidently say were good to go down.  The infusion was a little rough.  This time we tried new things.  We tried a little sedation for the ride in and for getting the IV.  Several reasons this was no good.  He couldn't walk into the infusion center on his own.  He fell of the scale when being weighed.  It did help with the IV start, but he still cried, just cared less.  As soon as they ran the benadryl thru his IV, he was furstrated.  It hit is balance hard.  He was out of it and could not stand up on his own.  It was too much.  Feeling icky and sick like that was not what I had in mind to make the IV go easier.  The next 3 days proved to be difficult as well.  That night he cried and cried and cried.  He was in complete misery over everything.  Uggghhh.  Forget it.  No medicating for IV's.  We will just have to find other means to cope.

The other new thing we tried was the infusion center.  We were booked into a new infusion center which was off campus of Children's Hospital.  We only had to go to Bellevue.  I liked that is was closer, quieter, and new.  I didn't like they didn't serve lunch.  It didn't hit me until we pulled up.  I am more than happy to pack a lunch for next time however.  It was also nice because we had the place to ourselves which meant we almost got the nurses full attention.  They were great.  One of them sat with Gary while I went to get him food for lunch.  They had a movie on demand system which was good, but once we got thru all the movies, he got restless.  Of course he fell asleep at the end.  For the first time in a year and half, after countless infusion, Gary did not wake up while having his IV removed.  Sedation gripped him hard.

LABS
Last month I had asked for them to check his B cell count, to see if those cells responsible for inflammation were coming back yet.  If they were, then Rituxan would be given again.  They had explained it was still to early.  I told them I wanted them checked because there was a overall inflammation I keep noticing in his hands, face, and skin.  They went ahead a checked them this month.  They are indeed back.  So in a few weeks we will be getting another round of mice medicine.  (I call it that because Rituxan has mice dna stuff in it. I know gack) .

TUMMY BUGS
Last year we made it thru the flu season with flying colors.  Nothing.  Gary did not really catch anything.  This year is proving to be different.  I wonder if it is because I am becoming a little more relaxed with his exposure or what.   Nov. 13 he threw up and was sick.  Recovered quickly.  3 days later another round of throwing up hit him.  He once again, recovered quickly.   Dec. 9th (Last night), he began throwing up again with tummy cramps.  That makes a three peat.  Hmmm.  I did have a little run of it a few days after he did last month so I was sure it was a tummy bug.  But 3 times now for him.  The good news is he seems to recover quickly.  Both times he has held down his important medicines so no hospital visits.  I knew yesterday something was up.  He was quiet and complained of a headache.  He did the same thing last month as well.  I few days before, I knew something was wrong or brewing because of his behavior.  Poor little boo boo.

Snow Tires

I think this is in the running for our Christmas Card.

Half

I wanted to pop in on Gary's blog and put an update.  He is doing good.  Remember my color scale I posted couple months ago.  Well lets bring it back.

Excellent

Great

Good

OK

Not Good

Poor

I think I will leave it at where it was back then as well.  I am still not convinced.  I see small signs like all the sudden he will look like he is sun burnt.  November in Washington, that is not possible.  It is what his skin did in the beginning when he was first diagnosed.  I have blogged about this before that yes we have been to not being able to walk very well and not swallowing, to recovery in that aspect.  But in the aspect of being close to finding Gary's magic drug combination,  NO, I am not convinced.  Last week Gary was acting a little off.  It is hard to keep a three year down.  He often has amazing energy so it is very noticeable when that energy diminishes even slightly.  Last week I noticed.  There was something about his face.  It was in his eyes.  It was being asked to be carried.  He was more red than usual.  Saturday it all came to a climax.  On a personal note it was very climatic because my sister's 40th surprise birthday party was happening.  Auntie Amy had said those very words.  "Watch, he is going to be in the hospital during the party".  Saturday, he began throwing up.  He was with Daddy.  I told Daddy to get him home as soon as possible so I could leave the decorating and come evaluate him.  There he was, white and uncomfortable and throwing up.  He also had gotten gum in his hair right before he got sick so he was quite the sight.  He threw up twice while I was home.  I called rheumatology to see what I needed to do.  They told me if he didn't keep his steroid dose down,  he would need to come in for a pulse.   She told me to try sooner than later so we wouldn't need to come in late.  We gave his steroid and he fell aspleep.  Daddy stayed home with him and I went to the party with a cell phone on my hip.  All my family and friends were there.  I was a zombie.  I could barely think.   I love my sister dearly.  We put a lot of work into her party, but I just wanted to be home with him.  But he was sleeping and fine at the point.  I planned to go home when he woke up in case that steroid came back up so we could go and to the ER and get the pulse.    Thank the Lord it stayed down.  He woke up feeling much better.  He started eating and was playing the Wii.  The rheumatologist called on Sunday night to check on him.   I thought that was very nice.  So he has since recovered.  But WOW I was hard to keep my head in the game.  Being around friends and family helped a lot though.  It is nice to be around people who know your worry because they have the same worry.  

He is doing fine now.  But something was brewing last week and it was written all over his face.  What is curious to me is that no one else has gotten sick.  So determining whether or not it was in fact a stomach virus, or his JDM is on my mind.  In September when we did go into the ER and he was throwing up with a fever, it was in fact his JDM.  Although he did not run a fever this time nor did the calcinosis inflame this time, I wonder what it was.  He recovered quickly, just like he did in the hospital in September.  The calcinosis seemed to be backing off but last week I noticed it increase in size in some area's, like on the inside of his arms.  The skin around those particular calcinosis sites look ominous.  But we will see.  I feel like we are at least in control somewhat.  I guess.

CLINIC

I have spent the past two days on 1-405.  Every time you make a turn there was an accident.  It was maddening. I had the urge to go on a family road trip.  A get a way with the family of sorts.  We have all been in a bad mood for some reason.  Yeah, well, my urge was cured over these past two days of sitting in the car with Gary.  Screaming and kicking the back of my seat.  I am not a nice person when returning home.  Everyone runs and hides.  When the door swings open to my house and step through the door, light flashes, and thunder rumbles.

The appointment went fine.  The doctor like the drug combination we are on and has a good feeling about it.  I was honest and said I didn't agree just yet.  Gary had fallen asleep on the way there.  He woke up with hot, itchy, red skin.  His cheeks looked like we had just come in from the sun all day.  His finger were red and inflamed.  I was not happy that he was doing that, but glad the doctor could see it first hand.  In the back of my mind I was expecting to fight off more tapering.  Meaning I was waiting for her to say, lets go down on the steroid again.  But she didn't.  I was able to tell her though that is why I called from the infusion center yesterday to have the Rituxan levels checked.  She said it was much too soon. I figured but needed to cover all the bases. Really, Gary isn't doing bad.  BUT its the same old same old.  I can tell his disease is really angry about all this immune suppression and drugs it is trying to be stopped with.  As always, metaphorically speaking, we are throwing dirt on a big bon fire that refuses to go out.  It's smoking and hot in the middle.   When she asked me what I thought, I grabbed my head and said, "you know, I want to give the Tacrolimus more time.  I don't like the fact he is doing what we did in the beginning.  The sudden onset of red, crazy, itchy skin and swelling."   I continued to explain that I know we have come a long way, but I am not sure.  The only time I was so excited was a couple months ago just after he had his first dose of Rituxan.  That was short lived.  But its hard work.  Only time will tell.  It's a fun thing to sit on.

We chatted about Gary's rage.  She said and I quote, "He has been through a whole LOT. A LOT"  She was sympathetic and suggest we get a punching bag to channel his aggression.  Hmmmm.  I like that.  It's worth a try. Gary, your sisters nose, NO, punching bag, yes.  Don't get me wrong.  I don't mean to paint him out to be a monster.  He is very very sweet.  But he is three and has unpredictable actions occasionally.  But Hey, don't we all.  We also talked about the Child Life Specialist.  We are going to try giving him some Adavant for next months infusion.  It helps him chill and will take the edge off.  I don't want to give him another drug of any kind, but I don't want him to be an axe murdererererer either.   So.


We then talked more about the calcinosis.  The only thing I can do about that is make sure she feels it and is monitoring it.  I told her it is unnerving for me to feel the calcinosis, especially on the inside of his thigh were it is much bigger and feels bigger and meaner than around his chest and throat.  I maintain as long as it stays where it is.

We had a med change.  One for the itchy skin.  Trying a different one to see if it helps.  My favorite was, "itchy can be caused by anything."  TRUE.  But not AS MUCH when you have JDM.

Hook, Jab, Bob.  Keep fighting!

October's Infusion

Wow does that four weeks between infusions go fast.  It started yesterday with the Teddy Bear.  I got a call from the Child Life Specialists letting us know she was going to meet us here.  She asked if we had been doing any medical roll play.  Inserting a fake IV into a teddy bear's hand.  I told her no because I don't want to remind Gary until it is necessary.  There is no reason to bring it up mid month.  I mean I could, we just deal with enough with the medicines.  So yesterday we spent the day putting in Teddy's iv.  Did it make a difference.  Not getting here.  It didn't stop the tears.  I practically had to drag him this morning.  My hands are full so it hard because he likes me to carry him.  He gets in front of me and puts his hands up to stop me from walking in.  He stayed outside.  He wouldn't come in.  I dropped everything I was carrying to go out and get him to bring him in.  Big Aligator tears.  Childrens is usually very quick.  Luckily today they were.  I have been practicing distraction technique with him which seems to work very well right now.  A cool toy, fun bubbles, whatever it takes.  It is amazing how many people step in when the IV is about to be inserted.  This time Gary sat on my lap facing me so we were face to face.  It worked very well.  He still cryed but was again distracted with our faces in each others. The Child Life Specialist got his attention a few times with play dough.  Our neighbor (another parent) blew bubbles, those ones that don't pop right away.  He liked those.  So we will keep working the distraction technique. Once he gets bigger I want to get him a pair of those virtual glasses you can play a movie in.  I had posted about those before. 

*Thank you to the nurse who suggested he be Buzz Light Year for halloween.  It worked well, it really did.  but I don't have Buzz Light Year in my arsenal of costumes.  LOL  I looked at her and in a joking manner said, "what do you think your doing".  We laughed.  Such wonderful people.

So the IV is in and he is sleeping.  I asked about running labs to see if his body is making the b-cells that are responsible for inflammation that were killed by the Rituxan.  I asked for this because of the intense itching and skin activity.  The nurse was awesome about it.  She got Rheumatology on the phone.  Of course I got the new fellow.  He asked what was going on.  He is very sympathetic and said sorry we were still having trouble.  I told him my concerns were minor but warranted.  It was very nice because the last fellow was very non chalant about my concerns which got to be frustrating.  I can tell this one is knew but at least he talks it out with me all the while keeping in mind I am a Mommie.  I am not sure he fully understood what I was asking for.  I am sure he understood but he needed to hear himself talk it out.  Today labs came back pretty darn good.  But the one thing I have learned from the past is that labs don't always follow what Gary has going on.  Overall Gary is good.  Small things bother me.  Very irritable and itchy evidence of vasculitis. Tomorrow we come back for a clinic appointment to discuss.  I venture to guess we will sit on this and give the tacrolimus more time to work.

Hi Ya!

Just wanted to pop in on Gary's blog and update.
Gary is doing good.  We take it day by day.  Gary is getting taller.  He is growing into a boy.  He is getting funnier and funnier as his vocabulary improves.  We have a power struggle going on in the house.  Gary verses the rest of the family.  His siblings have been getting frustrated with the little man getting his own way on just about anything.   Hmmmm.  Working on it.

Big brother McGuire heads off to camp tomorrow.  I am a little nervous but have so much going on right now I am sorting thru the wonderful emotions of life right now.  I went to my running coach certification class this weekend.  I felt like a big girl!  Back in college, on my own.  It was fun.  My wonderful, marvelous, incredible, amazing sister and her husband took the kids for the weekend.  Daddy had to work.  I left at 430 on Friday morning.  Gary had been tossing and turning all night.  He kept doing this weird swallowing thing.  He had been doing it on Thursday as well.  A few times I accused him of stealing candy!   That he was sucking on it and swallowing, trying to pry it out of his mouth.  Nothing.    Wooopsss.  Mom of the Year right here!  I woke my sister up to let her know to keep an eye on him (we were at her house).  She text me a thought on my way out.  The text said, "don't respond to this, don't text and drive, but we had a thought about the swallowing.  Calcinosis in his throat triggering his swallow reflex."   Uggghhhh.  It is completely possible.  He has an abundance of calcinosis in his neck.  Months in, when he was first diagnosed, swallowing and the muscles involved with swallowing were weakened requiring an NG tube.  After muscles have been weakened and damaged, it is thought that calcinosis is what happens in place of that damage.  That is how I understand it.  So it is very possible.  The other possibility, he has a  little post nasal drip that I can't see.  So keeping an eye on it is what is best.  If he shows any signs of distress then I will have it checked out.  He has been great since then.  But I really thought of turning that car around, and blowing off my class, because my kids come first.  During class, we discussed a lot the process of exercise and how our muscle kick out lactate ect,.  It actually made me teary eyed hearing and reviewing how our bodies work.  I had to do my best to not dwell on the fact that my sons body does this on it own to damage his muscle in an unnatural fashion.  It was ridiculous.  I had to bite my lip a couple times and tell myself to focus.  I wasn't going to let this disease in on my passion.  My passion for running and helping people with running.  It is funny how my precious sons disease can walk up from behind me as if on a sneak attack and shove me down like a bully on the playground.