It Just Had Too

We came in thru the ER today because all the sudden the calcinosis I have been fretting about started to turn red. He woke up fine. Came down stairs, seemed ok. Made a bed on the couch. He was all excited doing that. Climbed up on the couch and then all the sudden got really cranky. Started asking for me to lay with him. I got a closer look and his chest had a red bump so I touched it like what the heck. He jumped over the moon when I touched it. So I call the nurse left a message. I called my sisters to see what they thought. My sister called me back and said that she remembered something. My brother in law was playing air plane with him the night before, and throwing him up far in the air. The nurse rang on the other line, I clicked over and barely let her talk. I told her I think he might have a broken collar bone. He got off the couch and waddled. He was in pain. I told her we were coming in thru the ER. She told me to keep him as still as possible to keep the bone in line.  At that point he was laying on my bed. He screamed when I touched him. I got him in the car in his underwear, he was so uncomfortable. He cried. He was crying because he knew where we were going and because he was in pain. The drive to the hospital is about 50 minutes. He slept on and off. He kept getting pale. Then he said I have to puke. I told him to go ahead if he needed to. Instead, he went back to sleep. It was not usual for him. We got to the ER. He was scared and so was I.  I pulled my car through the driveway, did my best not to cry.  I did my best to get my keys out of the ignition.  I was shaking.  I picked him, wrapped him in a blanket, as if he were my precious newborn.  Although my new born didn't swaddle nicely into my arms.  He soft little hands wrapped around my neck. He hide carefully under his fire engine blanket as his little legs dangled at my sides. He barried his face into neck.  He cried with every move I made.   He felt warm to me. But his temp was only 99. That is not considered a temp. They took his blood pressure. There they were. Every where I suspected he had calcinosis is a bright red blotch. Like its trying to come out. After being in the ER for an hour, his temp shot up to 103, and he began vomiting. I was so confused. I brought him in for a broken collar bone? Nope. Its not broken. The calcinosis is coming thru it seems. But then his labs came back. White count is 21,000. That indicates an infection of some kind. So tonight we are on watch. The rheumatologists don't want to pulse him if he does have an infection because that could boost the infection. But if its the calcinosis that is causing the trouble, then we need to stop the inflammation. Another fun fact: today was the first day he had no steriod. We were tapering prednisone so today was day one with none. The doctor did wonder if the calcinosis is causing his body to go into shock or infection mode as a reaction to this process. So that is were we are at. His fever broke, he stopped puking.

They ran more blood tests tonight checking for everything. I think right I would rather here he has some a virus. But the calcinosis wouldn't make sense if it were viral. So thats whats going on.

Back to School

Today is the first day of school here in the Bradford Household. I can hardly believe it. It went by very fast. This week we went on an overnight camping trip up in the mountains. It was a lot of fun. Uncle Ray and Aunt Amy came along. Dad had to stay home. He missed us very much. Gary had a whole lot of fun. He loves being with the family. He was a little whiny at 2am but did just fine. None of us wanted to come home.  We had fun playing pancake tag.  A leftover pancake became victim to being tossed on to the others car windshield. The kids took great delight in trying to toss it and driving away quickly so Auntie and Uncle didn't have time to get it back on our windshield.  This game took place during frequent potty breaks which were frequent thanks to Gary.

Roasting marsh mellow's over a propane stove due to a fire ban.

TAPER

This week starts the biggest taper yet. Every other day of 1ml of prednisone. Still holding at level "Good" . He is also adjusting better to the new medicine they started him on for the molluscum. It seems to be having an effect. They at least look better. The constant potty was getting a little tiresome. Especially while we were camping. But it seems to have finally subsided.

CALCINOSIS
I have no comment. Just stay put. Stay under his skin and go away on your own and I will be happy. I just had him in my lap. He want to bend backwards to be silly and hang upside down. In the light you can see the calcinosis throughout his chest, in his neck area. There seems to be more in his groin area. So much for having no comment. As long as it doesn't bother him. OK it bothers me, what can I do.

It is hard to see, but I put a little black pointer right over it.  

NEW FAMILY MEMBER
We have a new member to the family. I can't believe I am about to type this but we have a dog. I am not a dog person per say, but this one is pretty different from the rest. Her name is Nikki. She is a Asian Akita Mix Blonde Fox looking dog. LOL She is six years old. Her owner recently past (my brother-in-laws father). We spent a little time with her and decided to give her a home. She seems perfect. She listens well, doesn't park much, and is house broken. Perfect. She loves to play catch. She runs and catches frisbee's and ball's mid air. She seems to be patient with Gary so its so far so good.

Nicky and Elexis on her first day of school.

MAKE A WISH
Gary's wish has been put on hold. We found out in order to put up the sun protected play set, we need permits from the city. Tap tap tap. *Shrugs* To be continued.........



CURE JM Pepsi Refresh Project
We are bouncing between number one and number two in these final two days of voting. Very nerve racking. Thank you to everyone for voting!  VOTE HERE

Happy Heavenly Birthday to Grandpa

Grandpa Richard

Gary's full name is Gary Richard after his late Grandfather.  Today would have been his 60th birthday.  Sending birthday balloons to you Grandpa.  We miss you.

1 More Week of Taper, Then Even Lower

We had a great weekend.  Uncle Bill took Gary to see Toy Story 3 on Friday.  He liked it.  He is not a big movie theater fan but when Mommie's not there, Uncle Bill can get him to do just about anything.  Mommie went shopping with Auntie.  Dad, brother, and sister went down to OR to celebrate with there big brothers birthday.  So we were all separated for the evening.  Everyone went to bed late.  Gary woke up around midnight however to tell me he went to see Toy Story.  I made sure I had Buzz and Woody laying next to him when he woke up.  We woke up early the next morning for run a 8k in the next 2 towns over.  This was the kids first race.  They did well.  I was proud of them.  It was completely crazy getting there.  Daddy had to go rescue Uncle Bill in the opposite direction because of locked keys in his car so they were late.  This meant I had to start the race with the kids at there pace.  We met up at mile 1 so Mom could take off running.  It was fun.  Gary rode in the stroller with Dad pushing.  I will update my running blog later.

Picture left to right:  McGuire, Elexis, Kapri, Gary, and Preston.
Running for Cure JM
(I officially named it the Cure JM Tour)

Gary Update and  The Great Taper

We are right in the middle of rocking 1/2 ml and 1 ml back and forth each day.  So 1/2 ml one day, full ml the next and then back to 1/2ml.  It's going ok.  He looks funny.   Not clear like he was before we started the great taper.  His face looks funny to me.  Like swollen and blotchy I guess.  It could be getting up early that morning.  He also started a new med for his molluscum.  That caused diarrhea.  So we cut the dose in half.  He overall has been in a kind of bad mood.  Yesterday I gave him his med's on an empty stomach.  One your are suppose to, one you are not.  He ended up throwing them up all over the car.  He looked so pale the rest of the day.  He was still running around though so we just kept our eye on him.  He was pretty white after that vomit.  I had been giving the new medicine spaced at least an hour before or after the cell cept.  I forgot to do that.  Woooops.    The calcinosis I decided to stop looking for it.  I will monitor it but I won't go searching for it.  It drives me crazy.  

In Memory of Cole Flack

Please vote so another does not fly away from us too soon.

www.refresheverything.com/makejmamemory

I'm better......

So I have calmed down a bit about the whole calcinosis  issue.  I had posted about it on the Cure JM board, then took it down for reasons I don't know.  Yes,  I can be bratty.  No one responded to it so I figured no one had anything to say about it.   I know.  This is me being transparent and honest.  I have the support on my blog so when Summer, Jenn, and Kaylee dropped me a note, I felt better.  Then someone on the board message me about the post, I felt even better.  Thank you Catherine.  She explained her son has calcinosis as well and what he has been going thru.  I suppose that is all I wanted.  Then the best sentence I read from Shari, calcinosis can resolve on its own.  So that is good and I will cling to it.

CURE JM is in second place.  We need every vote everyday.  Please keep voting.   Yay!!!

Special prayers to a family who lost there son to JDM last night.  My sincerest condolences.  He was 15.  

Back in the News: Calcinosis

That was quick.  I just wrote about this Wednesday.  As reported on Wednesday the doctor was pretty certain he had some calcinosis.  Right above his hip and across his chest.  I am a "outta sight outta mind" kind of person.  I know, that is a weird juvenile stance to take on it but simple.  Yesterday we went to help Auntie and Uncle paint there house.   Gary paints in his underpants to avoid getting paint on his clothes.  There it was, on his chest.  You can seen a "lump" coming through on his chest.  It is colorless, but most definitely raised.  The best part is it wasn't there the on Tuesday when we were at the doctor.  I stated that I didn't mind it as long as it didn't come thru the skin.  I did want to cry for second when I saw it.  But I don't want to get the kids upset, the family, or Gary.  So I just pushed it off in my mind.  Just paint.  We will just have to deal with it.  I wasn't feeling to great after his infusion on Tuesday either.  His face and eyes were swollen and red.  But that finally started to subside. He is the best little boy.  He is fun loving.  Going thru the "I hate you" stages.  It drives the other kids crazy.  But he knows it pushes buttons.  He loves to throw out a "I hate you" with a delightful tone.  I am not going to discipline him for it because I know he will grow out of it.  Some Mom's wouldn't agree.  That's ok.  There are things other Mom's do that I don't agree with.   Oh well. : )   Think I will go run these emotions out.

My friend Summer is about to start Rituxan.   It is the same medicine Gary started.  Sending prayers your way Summer.  

And the great taper continues.......

Last month my cheer leading pom poms were high in the air.  This month I have brought them down to my sides.  There still twirling, just at a different level.

Yesterday was as expected.  Completely draining.  I knew it would be.  I ran ten miles the night before because I knew I would not be able to get my run in yesterday.  BLOG JUMP HERE   : )

Gary cried when we turned onto 405.  Gary cried when we turn into Children's parking lot.  He went on and on how he didn't want to talk or get a shot.  Like a broken record he repeated that over and over again.  How he didn't want to talk to anyone.

We started out at the dermatologist.  We "talked" *smiles* about what treatment we were going to use for the molluscum.  There is the standard "freezing" off but its too uncomfortable.  We are going to try a medication they use for adult gential warts.  ************I stare blankly and instantly think, I am so not picking up that prescription***************.   Of course Children's Pharmacy doesn't fill the medication.   He also added another tummy protector.  I guess they have had success with it having an effect on the molluscum.  I was surprised rheumatology gave the ok on it since he is already on a tummy protector.  Putting him on two at the same time.  They explained it works differently then the other does but I was concerned it interfering with his JDM meds.  But we got the A-ok.   So who wants to pick up that medicine for me?  No worries, I will just have the love of my life pick it up.  He doesn't need to know what its for : )  I will inform him afterwards.  LOL     Pure Evil.  I know.   "Honey make sure you ask for consult from the pharmacists, this is a new medicine."      I will pick it up.  I will just use my loud voice.  "Before I turn this in I need you to know this is not for ME!" , "Before I pay for this,  I need you to know this is not for ME!".   This is fun stuff people.

After the dermatologist we headed over to the infusion clinic.  They were busy yesterday.  It was loud in there.  IV went in no problem.  Well, the usual.   But at least it was a one poke day.  The benadryl went in his body a little rough this time.  It stung has they ran it in the IV.  He acted like it was acid or something.  We kept the cool rags on his arm until he zonked out.  Our nurse was great.  On top of it.  Our rheumatologist came down to the infusion center to chat.  She asked if we could come up to clinic when we were done.  I was surprised how well Gary did with all that.  He gets a little uncooperative.  Plus its the end of our doctors day so she I am sure has had enough herself.  I told her he is still doing good.  I am not as happy as I was last month but realize that his body will need to adjust to the tapering.  I told her swelling seems to be coming in here and there.  One minute he will look fine the next red and swollen.  The nurse had made a comment to her that he looked red and rashy when he got to the infusion clinic earlier that morning.  I told her the dermatologist nurse also commented on that.  "He looks uncomfortable."   The doctor explained she thinks that with the disease it has made his blood vessels and capillaries "leaky".  She said that she has noticed that with her other JDM kids.  Interesting theory.  I said, "as oppose to active disease?".    She said yes.  Hmmmmm.   and more hmmmmmm's.  I mean anything is possible.  I just not sure if I completely agree.  Despite a little rash, his labs are holding steady.  She paused and looked at me.  I looked at her.   "Feel like being brave."  I told her, "only if you are".  So we are continuing the great taper.  I gulp this time.  For the next two weeks we will go 1ml then 1/2 ml then back 1 ml.  If all goes well, after that two weeks we will go to 1 mL every other day.  Plug my nose, here goes the cold water.  Jump in.

Calcinosis
Just in case you forgot what calcinosis, it is calcium deposits.  Here is a link to a recent a report that I barely understand but its fun to try.  HERE  She felt the area's I had mentioned I thought I felt a little something.  Right above his hip and across his chest.  She stated she was pretty certain that is was indeed calcinosis.  If you were to tell me that he would develop calcinosis 6 months ago, I would have freaked out.  But this whole process has taken me to a different place.  He can have calcinosis.  That's fine.  As long as it stays where its at and goes away on its own then I am fine with that.  Oh yeah, one more condition, it doesn't hurt him.  It makes sense though.  Reports say that calcinosis can occur as the bodies reaction to damage or previously inflammed tissue or muscle.  We use to lift Gary by placing our arm across his chest, instead of lifting him up under his arms because that was damaging the skin under there.  Plus the reflex muscles to bring his body with  him when you lifted him was gone so it really propelled that damage.  Placing our arm or hand across his chest  was damaging that tissue as well.   As long as those calcium deposits stay where they are at.

At this Point
This morning Gary has been making frequent potty trips.  Complaining of not feeling well.  Then eats a peanut butter and jelly sandwich.  Three year olds.  Unstoppable.  We are off to try and school shop.  May need to wait to make sure he is up to it.

Aug. 10th is next infusion

We have settled in to the 1 ml steroid dose.  How's he doing?  Good.  On my scale of:

Excellent

Great

Good

OK

Not Good

Poor

I will be able to report that there has been some slow down and minor changes.  Last month when we were in I was practically doing back flips in clinic so happy with what I was feeling and what I was seeing.  He has slowed down a little bit.  I noticed changes in some muscle strength.  When I put him into his car seat yesterday, I noticed that reflex that went missing from before is trying to come back.  Same with lifting him onto the potty.  I also noticed he was drinking something and it took a few swallows to clear.  But that was one time.  Even I get that from time to time.  He has asked me to carry him quite a bit.  He wasn't doing that before.  But we have been walking quite far so I don't know.  I don't like to "I don't know" myself.  I did all last year.  Until they started the Rituxan, and all that went away, it confirmed I did know!  It wasn't just being a three year old or my imagination or a fluke thing.  So we will see on Tuesday how his labs are and what they say.  

Where did it go?

Summer is almost gone.  The kids go back to school on Aug. 30th.  I can't believe it.  It just went away.  I hope in the next couple weeks we can get a camping trip in.  I have to get the kids back to there regular sleeping patterns.  Right now they are waaaayyyyy off.  Going to bed really late, and waking up really late.  I am going to try and get all the school business done like supplies and clothes.  That way they can focus on what summer they have left.  One of our new favorite things to do is go down to the river and take a dip.  Ever dipped in a river on a hot summer evening.  MUST TRY.  It is fabulous.  Sure it hurts at first because its really cold.  But when you get out of the water!   And its all over with!  AAAhhhhhhh.  Your body tenses, then lets go when its all over with.  Plus, your cooled down.  The kids love it.  I did it after a  5 mile run.  Really really nice!

CURE JM

We are still in the running for the $250,000 grant if you haven't heard.  Please Vote. Thank you to all my friends and family who have faithfully voted thru the month of July.  I appreciate it so much.  VOTE

The Cure JM concert is also coming up quickly!  I am really excited.  It is September 11th, 2010 in Hillsboro, OR.  Features Blake Lewis and Jessica Lerner.  We had a wonderful time last year.  Email me at roberika2@msn.com if you think you want to come.  We have a few families that are thinking about it.  I will let you know what our plans are, when I know what they are : )  The link to the concert is on the right>>>>

FUN WEEKEND

We have a jammed packed weekend in store.  Today the boys are going to the Seahawks training camp.  Why do we get such a wonderful opportunity?  We are blessed with loving, caring, not to be taken advantage of FRIENDS.  Thank you K. Patterson for the tickets.  I am staying back to let all the boys in the family go.  Want to know why?  Because tomorrow I have tickets to the hydros.  I won them on facebook.  I made up a poem, in seconds mind you.  It sounded like something a first grader would right but HEY I won :).  I have never been so that is what I wanted to do.  Yesterday was a free day so I took the kids down at the end of the day.  It was very cool!  I will post pictures later.

PRAYER

This week a friend lost her sister.  I use to work for the family at there restaurant.  The news was shocking.  I would often see them in the restaurant with her Dad having dinner or lunch.  I offer my condolences to the Potts family.  In loving memory of Therese.  It really wakes you up.  Makes you want to live life to the fullest. EVERYDAY.  

My brother-in-law is home and being watch close.  So is our house guests.  My regards to Whitney the baby basset hound.  That's it.  She only get my regards.  LOL   

A Letter from a Doctor

This is a letter posted by a doctor that someone shared on the CureJM board.  I wanted to shared.  It is kind of touching.  A little cocky.  It's a perspective at best.  Acknowledged.  But it lites my fire and makes me shake my head in equal frustration this doctor is claiming.  Hmmm.

Dear Patients:

You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?  How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?  How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know.  I do have information that you can’t really understand because of your unique perspective, your battered world.  There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.  It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past.  It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death.  I am not talking about doctors being afraid of the limits of their knowledge.  I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain -  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have.  You see why you scare doctors?  It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.  I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand.  You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors.  There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:

1. Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control.  All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.  That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start.  Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
2. Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease.  These doctors should be avoided.  But most of us are not like that; we really want to help people and try to treat them well.  But we have worked very hard to earn our position; it was not bestowed by fiat or family tree.  Just as you want to be listened to, so do we.
3. Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust.  Don’t expect a new doctor to figure things out quickly.  It takes me years of repeated visits to really understand many of my chronic disease patients.  The best care happens when a doctor understands the patient and the patient understands the doctor.  This can only happen over time.  Heck, I struggle even seeing the chronically sick patients for other doctors in my practice.  There is something very powerful in having understanding built over time.
4. Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.  Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home.  They might not fix your pain, and certainly won’t try to fully understand you.  That’s not their job.  They went into their specialty to fix problems quickly and move on, not manage chronic disease.  The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
5. Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address.  I can’t work that way, and I don’t think many doctors can.  Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.  It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems.  It helps me to prioritize with them.
6. Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you.  Some docs are not cut out for chronic disease, while some of us like the long-term relationship.  Don’t feel you have to put up with docs who don’t listen or minimize your problems.  At the minimum, you should be able to find a doctor who doesn’t totally suck.
7. Forgive us – Sometimes I forget about important things in my patients’ lives.  Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don’t want to admit my limitations.  Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded.  Well, maybe I mind it a little.

You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living.  I hope this helps, and I really hope you get the help you need.  It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.

Sincerely,

Dr. Rob

Gary's Woman

This is our neighbor.  Gary loves her.  

Bring it Back

I was reading back in my blog trying to recall dates.  I ran across this post.  I love this picture.  The best part is that I tried to put these same underpants on him the other day.  The waist is all stretched out.  They don't stay on his hips anymore.  Not only did he shed the weight from lowering steroids but he has gotten taller.  Think I have started a new trend for my blog.  I will go back in my blog to grab pictures from the past.  Just to remind me of where we have been.  How far we have come.

UPDATE

This update is brought to you by/for *Momo*  : )

The saga of the great taper continues.  After last weeks noticeable slow down, he has seemed to level out.  I imaging being on steroids all this time, his body has to learn to make his own natural steroid again.  So it make be a little rocky in the beginning.  He is doing better as far as energy.  His skin is a little red but he is an active boy.  I keep him layered in 70 sun block.  He has been refusing to wear hats suddenly so maybe its time for a new one.  SLEEPING   ugggghhhh I don't know what the deal is.   Or I do know what it is.  We have been trying to get him to sleep in his designated bed.  Up at 2am?  It's not going well.  But we shall stay strong.  That is why I slept in my daughters bed last night and he slept with Dad in our bed.  The moment the little bugger hits my sheets, he goes into dream land.  He loves my bed.  Who didn't love there parents bed.  It's the biggest and the best in the house.  Even to this day sleeping in my own parents bed is very nice.  The one thing I did see with Gary yesterday was him next to another kid around his age.  The were standing together at the window, and WOW could you see that the JDM.  The family does have beautifully pure white skin but Gary, standing next to this kid looked slightly, I don't know, tattered for lack of a better word.  He looked like all was not right with his body.  But we know this about him.  It just is eye opening when I get that glimpse.  The whole, but I don't look sick theory.  I don't look sick when I am not standing next to someone who isn't.

FRIDAY
Yikes! That's tomorrow!  We go down to 1 ml of steroids.  We will stay at the dose until we are seen on August 10.  We have a full day in the making.  We see a dermatologist at 8:45.  Gary picked up a skin virus when they started the chemo's.  I have never blogged about it I don't think anyway.   But he has a nasty case of molluscum.  It is a type of wart.  I know, VERY icky.  His body does not have the ability to fight these things off so they just keep spreading.  A few have become infected and hurt him very much.  We have to be careful when picking him up.  If he is playing and someone accidentally hits the infected ones, it sends him to his knees, crying and sweating.  They are harmless.  Most people they go away on there own with no treatment.  But, being immune suppressed, there is no ability.  I have been begging them to do something about for a year now.  Finally, now that he is in a better place, the rheumatologist mentioned, "they have a new treatment for these."  She got us in all in one day.   I l o v e h e r.   Because really at Children's, these doctors are specialists, wait lists are common.  So I will make to thank you for her handy work with the schedule.  After the dermatologist, we head over to the infusion center.  The doctor agreed to run over that day and do the clinic in the infusion center.  Must find gift to say thanks.   Back to the molluscum.  It says they are very contagious.  I pick him up all the time and have not caught them so I know it seems you should run the other way but really I haven't picked them up.  No one in the family has either so its all good.  I thought I read somewhere that if you have a had a wart before, you do have immunity to them.  But I could be wrong.  We take all the standard precautions.  The only one that is catching them his him.  I would like to apologize for grossing anyone out but I am not going to.  It is what it is.  Just another complication of all this.

My Running Blog
I did a 5k last Saturday in Enumclaw.  It was a great day of raising awareness.  I had not planned on running because this weekend Michelle and I are running in the Seafair Torchlight parade.  But my little sister and brother-in-law threw the money in my pocket and I couldn't resist.  There is a wonderful story on my running blog you need to check out.  Well more than one in that day.  A very nice lady donated to our pirate costume and my sister the hero who ran in the race.  Click Here

We Have a Guest

This is Whitney.  So little time, so many things to chew on.

We are babysitting my little sisters baby basset hound.  Cute!  Aaaaahhhh!   YEAH RIGHT  There is nothing cute about waking up to the sound of your running shoe being chewed on!   She was trying chew my ipod sensor off.  I don't find that cute.  But she is cute.  I am more than happy to do babysit though.  My brother-in-law is sick and in the hospital this week.  We so know what that is like.  She asked me to go to her house to bring her clothes.  Well that is my expertise.  Happy to do that task.  My brother-in-law had a  seizure of some kind on Sunday night.  We went to the ER with him.  They sent him home saying they could find nothing medically wrong with him.  GOOD SAM in Puyallup.   Yes, I will be naming the hospital.  We were all really nervous to take him home.  By Wednesday he was getting worse.  They were desperate so they returned to the general doctor.  That doctor sent him straight to the ER (not Good Sam).  He said he should have never been released.  His brain isn't getting enough blood.  The blood flow is being compromised by block veins that were damaged  from some previous injury or genetics.  Ugggghhhhh.  Scary stuff.  They are closely monitoring him to see if they body will repair itself or if they need to angio plasty those veins.  So crazy. Prayers are welcome.

Trying to let it not get me.....

It would be the taper. We are in the second week of the Great Taper. We went down from 2.0ml to 1.5ml's today.  Suddenly anxiety is kind of nudging me.  We went to the mall.  Did one lap around.  He asked me to pick him up by the time we got around, which may be normal for any three year old but he isn't all that normal.  He let his body relax as I carried him out to the car.  It didn't feel right to me.  His sudden lack of energy.  I quickly played back in my head the medicine I had given him hours before.  Did a mess up and give him a hydroxzine which is like benadryl.  No.  No, I am positive I didn't do that.  He slept on the way home and is still sleeping.  So we will just wait it out.  I am sure he is fine.  I just don't want to let the possible in.  Now if he keeps me up tonight because of this long nap, well then, it will be a long night.  I never deter naps.  Sleeping is good.  He has been having trouble sleeping lately.  Lack of sleep could be catching him.  He has been a tiny bit redder than last week.

Crossing that bridge over the river of prednisone.

 

Holding on tight.

www.garyvsjdm.com

We're back up and running.  No worries if you got a note from me saying I have switched addresses.  You will just be redirected.  Sorry about the inconvenience.   Sheeww!

WOO HOO

Please stand by!  I had or have 19 days after the expiration of my domain to get it back. I got it.  I am just waiting for google to send me an updated password to load it.   Hopefully it will redirect back to www.garyvsjdm.com.  Thank you for your patience.

Technical Difficulties

It was brought to my attention this morning that my blog was being redirected.  My domain name expired and it was snatched up instantly.  So I have temporarily renamed it back to the www.garyvsjdm.blogspot.com until I can figure something else out.  In the meantime, I thought it was malware from one of my gadgets and deleted them all trying to fix it.  NOT FAIR BLOGGER!  You could have warned me.  I have had that website name for a year now and you gave me no chance to renew it.   So if anyone asks, I would appreciate it if you could help me redirect them to my blog.   Just add blogspot onto garyvsjdm.  Sorry about that.

I mentioned my first triathlon JUMP TO MY RUNNING BLOG to see how it went.

Clinic Appointment

Ladies and Gentleman, Welcome to the GREAT TAPER.

Labs are good.
Strength is good.
Skin is better than it has ever been in a year.

Our schedule includes the following.  Today we decrease the steroid to 2.0ml.  That is down from 2.5ml which was the start of the taper 4 weeks ago.  For one week he will stay at 2.  The next week we go down to 1.5ml.   Then the next down to 1ml.  She wants to see us back in 4 weeks to see how he is doing.  

I am not nervous this time.  I am some anxiety in the back of my head but I have a really good feeling about this.  I wanted to jump on top of Dr. E's head yesterday and wrap her in hug and scream, "finally!".  After a year and 2 months of aggressive treatment.  What a ride. Ok I admit.  If we happen to have a glich, my bubble may burst so I may be setting myself up for that but I have a lot of confidence in my bag.  I just have a really great feeling about this.  I know we have a long way to go before we party, but maybe a mini party?  My heart is doing a happy dance for the first time in over a year.  There was a little thing we are keeping an eye on but I am so not worried about it.  He does have a few funny feeling pebble like bumps in his chest.  We suspect calcinosis.  But there is nothing they can do for it if that is what it is.  It's not confirmed.  He is doing so well even if it is, we will deal with it.  The doctor asked if I was going to put him into preschool.  She said he certainly is physically ready.  She was encouraging though.  She expressed concern with him being immune suppressed but also realized he is ready to go as well.  I told her I am avoiding it because it is a hard decision for me.  Preschools are a breeding ground for colds and all sorts of ickies.   I have a few weeks to decide.  I don't know.   Gary is doing well and I want to keep it that way.

Yesterday I had NO FUN sitting in Seattle's traffic.  I will post more later about that.  I have pictures.  I wanted to share our scenery.

Ok I am off for the day.  A friend of the family lent me her bike for Sunday's race.  It's a speed bike.  I am a mountain bike girl so must practice.

Thank you Summer for posting CURE JM campaign for the Pepsi Refresh Project.

Infusion Today

Gary's infusion went smoothly today.  Excellent nurse who had everything in order.  She had everything rolling the moment we walked in the door.  It's so nice when they are on there game like that.  The one thing she didn't do was ask questions.  Usually if you are about to administer drugs to a person, especially a child, I want to know how they are doing and why they are getting the treatment just so everything jives.  That's ok though.  I knew.  Everyone is different.  Gary's anxiety is mounting each time now.  So I am hoping that tomorrow a decision is made to start spacing these out further apart.  He was delighted that Elexis, his 8 year old sister was able to tag a long today.  I was a bit annoyed.  My daughter is my little Momma.  She often speaks out loudly, "it's ok buddy."  She even would run to get the nurse if the IV pump went off.  "Excuse me, are thingy is going off."   It's very cute but sorta my job lol.   Gary fell asleep almost instantly once the benadryl hit his vein.  IV went in the first time.  Last month we ended up in his foot.  But I went back to the numbing cream and wrapping his arms in warm blankets.  I was starting to consider having a port put in.  I have decided that if for some reason he turns in another direction and requires more frequent IV's then I will insist on a port.  But right now its looking like we could start heading away from that.  I listened today to few kids getting there ports accessed.  Screamed just as loud.  One child's couldn't be accessed for some reason.  Those were some loud tears.  Brings me to tears.  I am not even there Mom.  Several times I found myself wanting to put my head between my knees and find a happy place.  The 2 and under age group is especially rough.  It doesn't seem to openly effect Gary.  I think he is glad his is in and thats not him again. I could not wait to get home today and get some training.  But the hospital has kryptonite underneath it or something.  It sucks the life right out of me.  I could barely stand up this evening from pure exhaustion.  I was really looking forward to some training.  : (   No go.

No Posts?

Now you know when you don't hear anything that is either good or bad.  Well its GOOD this time.  Gary is doing excellente!  We have an infusion tomorrow.  Yuck. But since he is doing so well, I am looking forward to our clinic appointment on Thursday.  I am hoping we can go down on something or maybe space an infusion out to 6 weeks instead of 4.  He has been tolerating the sun well,  with as much protection as I can give him of course.  His skin seems to be returning to a normal state.  He has a few small area's, like his arm pits and little bit on his tummy and chest that show signs of vascular damage or activity but his strength is 99.9%.   I am feeling over the moon about all this.  I mean its just break down and cry pure joy.  For a whole year, I just wasn't sure. I wasn't sure they were going to be able to knock it down and keep it quiet.  There is a whole new confidence I have now.  I know we still have a long way as far as getting off medications which is the true test.  But if it wouldn't be too much to ask, lets pop the cork on a mini mini bottle of champagne and give a toast to.....you guessed it.......my friend Rituxan.  We will have labs tomorrow so I suppose we can hold off on the toast until then just to be on the safe side.  In the mean time, here's too the climb.

Forth of July

I hope everyone enjoyed the holiday.  Ours was great.  Cold but good.  Gary really had fun.  We went and did some camping with Uncle Bill and Auntie Alyssa.  We rode our bikes, played games, roasted hot dogs and marshmellows.   Gary's appetite as been really crazy lately.  We are talking non-stop eating.  I am staking claim on that he is growing and growing.  Sure, he still on steroids but eating is good.  It's healthy.  If your eating, then he must be feeling fine ; )

And back in the blog news is Make A Wish.  I know I mentioned it couple months ago that Gary was approved for a wish.  Well it looks like sometime this week or maybe next that wish will be granted.  Gary will be receiving a sun covered play system in our backyard.  We took a little time to really search our heart and our minds when making this wish.  Essentially it feels we are making the wish for him.  So we had needed to make sure that it was the right way to go.  Our thoughts were, what if one day, when he is older, there is something he can verbalize that he wants.  But we came to the conclusion that not only for his protection, but he will have a blast on it.  The system is being donated by Rainbow Systems out of Spokane, WA.  The cover is being donated by a company in Ohio.  We are excited for him.  I will keep you posted of any activities or parties surrounding this event.  

Make-A-Wish always bring present and goodies.

Other Happenings......

My nerves are kicking in.  I am registered for the Seafair Triathlon coming up already on Sunday.  Why do I get myself into this LOL?     Oh yeah,  because I can.  Jump to my Running BLOG.

Vote Vote Vote Starting today!

Re-Cap of my Run

I few people have been asking me how the my run went. Well here is my new running blog.  Click Here

New Video

Don't forget to mute music on the blog first down on the right hand side.

Cure JM from Turtlebox Productions on Vimeo.

Donations

I am so pleased to announce that mere hours before the 2010 Seattle Rock n Roll Marathon, I reached my fundraising goal!!!!!  I am so touched.  Every donation that came in is so emotional.  Each time I literally choke up, throw my hand over my mouth and weep in amazement.   I know it sounds corny but it is so wonderful!  So far with the Austin Marathon and now this marathon, my total is 3,650.00.  It may seem small but it just feels huge to me.  It feels huge because this amount came from my family and friends.  I know things have been interesting for everyone lately in this economy.  So like my fundraising page says, I know its huge when people donate.   Alright, can you believe its almost midnight and I have to be up by 4am to be down in Seattle.  Thanks again to everyone for donating.  Thank you for all your encouraging words.  I appreciate it to the moon and back. I will post pictures later tomorrow afternoon.  Also, I know I exceeded my goal but feel free to donate anyway. ; )

New Donation Photo

I put up a new photo for Gary's fund raising page and shared it on facebook.   So I thought I would share it here as well.

Click on picture to donate!

This time last year

I have been thinking lately about his time last year.  This time one year ago we were in the hospital for a week because of an unknown infection.  Yesterday, he played all day.  He ran.   He jumped.  He swam.   He ate and drank. And at days end,  slept so good.  This time last year I had to wake up frequently to help him turn in bed to find a comfortable position. I had to wake up to mess with his feeding pump that was hooked up to his NG tube.  In once a week for infusions.  I have not stopped to put my gratitude in print.  What an amazing journey it has been.  I want to thank Seattle's Children Hospital for all there amazing work.  Thank you to Rheumatology who as been there every step of the way.  Thank you to the nurses who speak with me frequently about the big and little things.  Sure I have minor complaints throughout my blog, but hey, its my job.  I am so thankful we were able to get him back.  There was a day that wasn't possible yet.  And it wasn't very long ago.  So thank you Father God  for your healing and your protection over this family.  I humbly recognized all that has been done.  I know the fight will be life long.  I will still worry.  I will still rant.  I will always be thankful.  I have him to love and enjoy with his brother and sister.  That is past the stars wonderful.  Thank you for each day God.

I love you all for the encouragement and support.  

Almost Run Time!

I had started a Run Blog so I didn't over "run" Gary's blog with running stuff.  It's not ready yet.  But in the name of raising awareness my next marathon is coming up.  I decided to stick with the 1/2 Marathon.  June 26th Seattle Rock n Roll Marathon.   I am so excited!  Did I mention I was excited.  I am running with my good friend Michelle Pritchow.  We have a few on our team, that has been lovingly been named TEAM GARY by another team member Becky Kinney.   I haven't really pushed for donation this time because this race is more about raising awareness.  Of course, I am happy over the moon if someone donates towards the cause of finding a cure for jm, but everyone was so generous with the Austin marathon.   So we are raising awareness. I feel this is just has important.  My friend Heather (Mason's Aunt) found this interesting article:  Click HERE to read.

Raise Awareness!

Our Shirts will catch Bill Gates or Warren Buffets Eye!  Bill, if you are reading this CLICK HERE to make that donation!!!!!!!!
I am hoping for some Seattle sunshine to catch the millions and millions of silver glitter specks I have doused our running shirts in!   I hope to leave a trail of glitter LOL.  Maybe I should put more on?? Picture taken by my 8 year old.

Summer

Thank you to my friend Summer who always leaves me a comment.  Not to down play anyone else.  But I just wanted to express my appreciation for her input and love she leaves.  I find it very inspiring especially since she experiences this disease first hand.    Thank you Summer

IVIG Infusion Number: Lost Count

We had our monthly infusion today.  Our check in time was 8:15.  We had a great nurse in the infusion clinic.  She was on top of everything.  All went smoothly.  Except for the IV.    The nurse asked me right away if I had put numbing cream on before we came.  I replied, "never have done it that way."   I mean we have used the numbing cream plenty of times but never at home before we leave.  I told her that we would just go ahead and use the J-tip.  The numbing cream irritates him to no end.  His IV's have been put in on the first try lately.  So I put warmers on his hands but it didn't go the way I had hoped.  They tried in his hand.  Then in his arm.  All the veins have been accessed so you can only use them so many times.  So we went for the foot.  I told her don't bother with the J-tip.  It's an extra poke.  There were plenty of juicy, wigglies.  I had faith she would get it on the first try.  He did jump and scream a bit more, but it was in.

Labs

In my previous post, labs were important today.   They came back "ok".   They came back "ok" enough to lower his home dose of prednisone from 3ml to 2.5ml.    His AST level is 50.  That is still elevated but could indicate his liver might be irritated.  This level has been up for awhile.  So if it is his liver then going down on the predinose is a good move.  If its the disease, then we will see.

Home

As I mentioned before our nurse was awesome.  She ran the methotrexate and we were out the door.  However, we turned around and went back for some Tylenol.  Gary looked really pale.  He was grabbing at his head crying.  They quickly gave hime Tylenol.  He slept and drooled the whole way home.  It's been a little rough this afternoon.  He is very temperamental.  He is King of the House tonight.   The Red Queen shall bow down.  Just for tonight though Gary.

Checking in Again

Having fun playing around with the new blog format : )

Gary is doing well!   His energy is as always incredible.  He looks pretty good.  He complains about tummy pain but I think I may have an attention issue going on.  He will say my tummy hurts so his Mommie will cover him in smooches.  I love it!    I am really pleased and feel at ease with where he is at right now.  I can't imagine how I will feel when we are tapering off all these medications and still going strong.  It will be like a fog lifting.  He has some small signs that come and go.  Like skin changes but overall, its good.  We have a  clinic appointment tomorrow at one to check-in.  Then on Wednesday we have our IVIG infusion at 8:15am in the infusion center.    So I will report after our visit.

Gary did well with the sun.  I kept the 70 block on the best I could and did the traditional hat, jacket, cover it up.  Seattle has not seen much sun yet this summer.  In fact typing "summer" is confusing because it certainly doesn't feel like summer.  We spent the weekend outdoors however for big brothers baseball games.   It was a lot of fun.  Gary did fall down and scrap a knee up.  He is definitely less tolerable of the sun then your average kid.  And that is from the disease and smear all the medications he takes to that sensitivity and I start fearing I am not being careful enough.    One sunny day we had a couple weeks ago, I did call on my fellow JDM moms because it looked like Gary was about to blister his face was raw red.  I had him covered, and blocked they whole day.  But they talked me down and sure enough the next morning he looked just fine.  Sure I begin to wonder if that exposure will activate the  process of the disease,   muscle weakness, skin rash, ect,.  

My good friends on facebook have been enjoying the fact I shared a little movie trivia with all.  My children watched the new version that is out, "Alice in Wonderland" with their Auntie and Uncle.  Well, they kindly informed me that they both agreed that I was the Red Queen and my sister were the White Queens.  So I YouTubed the Red Queen.  I have only one comment, "Off With Your Head!!!"    : )

Oh bother, I'm a gentle flower petal.   Well, until you walk in dump your backpack at my feet and slip your shoes off without putting them by the door in the basket.   OFF WITH YOUR HEAD

Checking In

I wanted to do a post just checking in. Gary is doing well. On Tuesday we had our six month eye check up. Everything checked out A-Okay! No signs of damage or deterioration.  I think he may have been a little more sensitive to the drops because it took over 24 hours for them to start working again.  His eyes stayed dilated. Finally this morning they seem to be back to normal.  Gary skin seems to be less active lately which is a good thing.  I did call the nurse before Memorial Day weekend started because his eyes were puffy and bloodshot for the whole week. But they were fine over the weekend.  She said it could be a reaction to the Rituxan.  It could be allergies.  It could be the JDM.  It could be nothing.  It could be mentally draining.  Yesterday he did have a little bit of a rough day.  He woke up complaining of tummy pain.  Visited the potty a couple times.  Threw up dinner in the evening but wasn't showing any other signs of anything.  So I think maybe just a tummy bug or his body is starting to react to some of the medications?  Here is what I do.  If he doesn't have a fever, is not bleeding from anywhere, is eating, is going potty, is up and around, then he is OK.  Always watching.  You just know.

Before the tummy pains started he was had a big appetite.  These pictures were taken at 10:30pm.  He was eating a  peanut butter n jelly.

 

Hey Mason

I shall have a tantrum.....

Oh being patient is so hard sometimes.

Especially when it comes to your child having Juvenile Dermatomyositis.

I will have small issues that nag me and nag me.  Like my shoulder will actually ache because I need to know.  I need to know why his eyes are puffy.  Nothing dramatic.  Nothing crazy.  But enough for me to notice.  It's a symptom.  Facial swelling is part of the disease.  It almost looks like the inside of his eye is a bit irritated.  Slightly bloodshot eyes but nothing that requires an emergency helicopter 911 flight.  It was happening last month when we decided to do the Rituxan.  Like my previous post says, we have to wait to let the Rituxan work.  What if I don't want too?  I want it gone now.  I want to start tapering.  Insert kicking legs and wild arms.

So I found this video the cutest little girl on how to have a tantrum.  Maybe I will follow it like as exercise video.

2nd Rituxan Infusion Complete

(Forgot to publish this one)

Thursday, 9:30 am we went the hospital to get our 2nd infusion of Rituxan.  So it is now official.  The full dose of Rituxan is in.  If he gets another dose it wouldn't be for another 6 months.  Now its wait and see.  They didn't bother taking labs this time because we just had them done 2 weeks ago.  Regardless of what they are, it wouldn't matter.  They are going to give the Rituxan time to work.  Gary did very well witht he infusion.  It could not have gone any better.  We finally had the xrays done of his ankles.  They looked good.  We talked about it may be tight hip muscles.  Just one of those things I will continue to keep an eye on.  After the Rituxan, we did the IVIG infusion.  It went well too.  Frequent vitals, all night long.  He is full of energy today.  Of course it whipped me!  It always does.

Full Throttle

Oooohhh my goodness.

Constant.

Constant, go go go go go go go.  I really don't think he was ready for another steroid pulse.  His energy is relentless.  Unfortunately, unlike most three year olds, it tends to catch up with him.  With the nice weather as an additive to super hero like qualities, (not to mention the many many layers of 70 sunblock), his ankles seem to be acting up a bit.  I tried to get him to wrap them up in ace bandages to give him some extra support.  I cut it in half to make it sized to fit him.  That did not go over well.  He wanted no part of that.  He kept falling though and has a Frankenstein step going on.  He loves to full on run.  An ace bandage gets in the way of that.    I am not overly concerned about it right now.  On top on his energy he has been in one I'll-get-out-go bad moods for the past 2 days.  Tantrum after tantrum after tantrum.  Either he is over doing it but fails to stop because he is a three year old or I don't know.  I say I don't know because I of course fear the worse.  I can come up with one hundred million things I fear he is in a bad mood.  But then you drop the mother act.  Go with logic.  Sometimes you just in a bad mood.  I also have another theory.  Tale end of terrible two's?  At the peak of terrible two's is when he had a lot muscle weakness.  He has some making up to do.  I can remember back to last year when he would try to throw a tantrum.  He would involuntarily end up on the floor because his muscles could not support the motion of a tantrum.  Then he would get stuck on the floor unable to get up.  So yay to these tantrums?  Be thankful he can have them?  I think not.  Nice try though.  We go in Thursday for our second dose of Rituxan and IVIG which means we won't be able to pull off the a day stay.  That will put us in for the night.  And another lovely dose of steroids.

Happy Birthday to McGuire

I missed my oldest's Happy Birthday Blog wish : ( !  We celebrated on Mother's Day.  McGuire is 11 now.  Happy Birthday to my first, most special boy.  I love you McGuire.  I love your passion and kindness.  All the other stuff we will figure out and get through.  I couldn't ask for a better son.  Keep up all the great work.  Keep trying with all your heart.  Don't sweat the small stuff.  (PS You had a big head which made your birth difficult).  LOL   I will always remind him of this.  I do not wonder why he rolls his eyes at me.  I would roll my eyes at me too if that is possible.

HOME

Yay!  Were home.  We got in at 4am but we did it.  I think it made a world of difference for him to wake up in his own bed.  He is in a wonderful mood this morning.  Daddy decided to take a day off and spend some time with him.  Daddy works a whole lot so we don't get to see him a lot.  It's a strong coffee kind of day.

Busy Bleeding Posts

I am doing a lot of posts huh : )  Well I just couldn't resist and not share are drama.  So a few hours ago Gary floated down from his benadryl dream.  He woke up hungry like a wolf!  He was ravinous.  Somehow, the intern doctor thought it would be cute to write orders for a liquid diet.  His dinner was broth, yogart, and juice.  Mmmmmm.  I don't think so.  Have a ever shared with you what a different person I am around my sisters?  I maintain being polite but drop subtle death threats.   "Yeah, find out why she wrote orders for a liquid diet.  Someone is gonna get it."  I heard the nurse walk back to the nurse station and say, "that mom in there is threatening me."   I called after her, "no I'm not!".  It was all in good fun and we were all giggling but......not.   I order Gary a pizza because he was truly that deseparate.  I had read it either kills your appetite or turns it up.  Guess we know which one.   He ate three large slices of cheese pizza from Papa Johns.  I was impressed.  We had to cut him offf in fear of it all coming back up.

So one of the CNA's asked my sister to move out of the bed so she could get Gary's vitals.  Sounds like no big deal I know, but I didn't like it.  I have been coming here for a year now.  At least once a month for over night stays ect,.  NEVER have the nurses asked me to move.  They have always been extremely polite and maintain that comfort barrier.  They always do vitals around the patient.  All of there instraments reach just fine in every direction.  I know I must be in a mood but, no.  No that is not ok.  He was snuggling with his Auntie which was keeping him calm.  I sound like a horrid pain in the neck, but I was at least nice about it.  I talked to the main nurse about it.  Asked her nicely to talk to her assistant.  Besides, I got mine back.

BLOOD
So soon after my chat with the nurse Gary decided he needed to go potty for the 32nd time.  I carefully lifted him out of bed.  We do business in a urinal so they can measure.  While in the middle of said business, a beautiful crimson poka dot pattern began to form on the floor.  In slight terror I recognized what it was.  Blood dripping from some where.  I panicked slightly but gained control.  My greatest fear was that it was coming from the place where we were conducting business.  That was still in the plastic urinal.  Relief one.   I went the next logical place.  The nose.  Relief two.  I still could not find it.  Out of the corner of my eye I finally saw it.  The floor was getting pretty colorful at this point.  It was coming from his IV.  The nurse had to use more than one access.  One for normal saline, the other for Rituxan.  So it was a two for one kind of IV.  Anyway, that med port access had came off!  It had slipped off so the Rituxan was running on the floor.  After I just got done chewing them out for silly indiscretions, I need them.  Funny how that works.  I am not sure if it was because we took his hospital gown off because he was hot and let it hang on the iv pole which put weight on the tubing which pulled it off.  Or the nurse did not put it on tight enough to begin with.  No matter.  We all worked quickly to clamp it off, turn the Rituxan off, and do damage control.  BAD   bad is now that he had missed some off the medicine because it ran onto the floor.  Really BAD pharmacy would have to mix a whole new batch if they wanted him to have the small amount.  Everything else like the tubing could be replaced because it was considered contaminated from being on the floor.  We all held our breath as the nurse called the pharmacy.  If the answer was he needed it would have meant a very costly accident had happened.  I don't even want to think about  how much the Rituxan is.  The news was good.  The pharmacy said its fine.  The amount that went on the floor was very little.  Can I get a praise God thank you Jesus! 

It is currently 1am.  My baby sister came with me today which always makes this whole thing waaayyy better.  We are bound and determined to not sleep over.  The infusion has finally ended.  We started it at 3pm.  They are asking us to stay for another two hours for observation.  The "team" wants to make sure he doesn't have any further reactions.  The nurse on the day shift noticed his face was slightly swollen.  His lips are a bit swollen as well.  We have had issue with puffiness all week.  I really don't think it is from the Rituxan.  I will humor them and play it safe.  Fine, we will leave at three am. 

Good luck with your infusion Summer!  Praying for you as well! 

How Rituxan Works

I found this animated video of how Rituxan works.  Interesting:  Play Video

Infusion Today

We are at the hospital today getting our first Rituxan infusion.  We got here at 9:30 this morning.  It was a rough IV start.  Had to get poked twice.  Well, really 5 times not because if you count the J-tip's and the "woops we forgot to get labs" surprise poke : ( .

  Took awhile for them to get everything straight.  It usually does.  I love it when they apologize.  I finally said but kindly said, "oh come on, this is standard procedure."  They had him down to get cytoxan.  Took a good three hours to get all that worked out.  We come back in two weeks for the next dose which will be an overnight.   My Prince sleeps once again, in a cloud of benadryl.

Just Waiting

So we are just sitting back waiting to here from the hospital when they want us to come in for Rituxan.  I am guessing it will be Fridayish.  Gary is doing just fine.  His slight inflammation has quieted down and his mood has returned to being more pleasant.  We had labs yesterday.  He got the finger poke.  This time it took hours for it to stop bleeding.  No biggie really, I mean for me.  Well I do have to battle him keeping it wrapped up but he is the one that has to deal with blood.  For a three year old, it can be a big deal.   If you ask Gary to demonstrate his impression of what it is like to get an IV placed, its pretty funny.   He mainly uses motions and facial expressions and sounds.  "Day take it and eeeerrrrrrrruuuuugghhhh", he motions to his hand as if he is holding a large kitchen doing a big stabbing motion.  "Den I doe,   AAAAHHHHHHHHHHHH, and I try (cry),".    I think it is so funny and sad at the same time.   I do think of still having a port or pic line put it but since the weight has come back off, he is an easy poke.  It is a one time poke.  We have not had to try and try again in so long.

Birthday Blog

Our birthday blog is coming up!  So in celebration we ordered what helped get us thru the beginning of this disease.  Yes, I have lost count how many times I have seen it.  It has, however, been awhile.  Gary has moved on to Caillou and other cartoons.  We wore our last copy out.  To be honest I am not sure where it even is now.  So I ordered a brand new copy.  Happy Birthday Blog.    Any excuse for a present, right? We are also approaching our 1 year anniversary of Diagnosis Day.  Yes!  Another excuse for a  present : ).