Enbrel Today

Thank you Summer and friends for all the nice comments!

Today is the day.  I would love to get it over with but I know Gary will not feel the same.  I would not to start or end my day with two shots.  I will be watching the step by step several times.  Enbrel was delivered on ice in a big cooler.  Never had a delivery like that before.  We were able to get the co-pay covered thru Enbrel for six months.  It was a lot of chasing but worth it.  I am nervous to give this one only because the needle is bigger.  The pharmacy at Children's used a small gauge needle.  This one is clearly bigger.  Stinks.

Gary has been doing better.  Our latest battle is he is always hungry but will not eat.  Well, he will if it is the right thing like a donut or tuna fish.  But that's it.  He keeps crying at night he is so hungry but if it is not a particular way or kind,  then he will continue to cry.  Argggghhh.  I tend to think this is a normal kind of thing for kids but with all the medications his seems to be magnified.  I am thinking of getting him to drink on of the kid protein shakes before bed time.  See if that helps.  His new thing is to throw up his medicines.  I always yell, please please don't.   Poor buddy.  But he has mastered gagging.  I wondered when he would catch on.  He is getting older and wiser now.  Darn it.  I gotta find some new tricks!

Another problem I have been keeping an eye on is potty time.  He has been complaining about going number one : (   Eeeekkksss.  I have a feeling he may have scratched it causing it to sting?  I don't have that particular part so I am not sure.  Keeping a very close eye on it.  I have heard horror stories of kids on immune suppression with urinary tract infections and things like that.  Hmmm.  Maybe I will get him in, even if it is just a scratch.  He doesn't complain all that time though.

Yesterday his eyes were very heliotrope looking.  Like my new tech term for a JDM rash?  Talent.

Blog Name Change

Blog name domain thing expired again.  Sick to death of trying to renew so www.garyvsjdm.blogspot.com it is.  It is not redirecting either so I will so find out who really cares to read anything.  No worries,  its mainly for me to keep track of treatments, the when and where's of everything.  I informed the one person I needed to so all is fine.  DUMB!  I mean I tend to think I can find my way around a computer and the internet pretty sufficiently, but this one has me stumped.  Again.  So forget it.  I don't have time.

Infusion Wednesday
Big boy had his infusion.  It went smooth.  Awesome nurse.  On top of it.  Tears with IV start but got it in one poke. Raging,  ticked off, little boy afterwards.  We started our first enbrel shot in the infusion center.  It defeated the purpose of teaching me because the pharmacy already mixed it for me.  I know how to do the injection.  Oh well.  It was good to have a nurse watch me do it as a review.  She commented when we were through, "your pretty much a pro".  Yes, yes I am. *Giggles*

I ran into one of the doctors from rheumatology.  She said "hey!  how are you?  how is he?".  I did not bring up the May med increase and the fact I got busted for it.  I am done and over it now.  Tired of talking about.  Although the last time something like that happened, someone said something I didn't like, it took me a months and months to get over, LOL.  And look, here I am bringing it up.  Only for the sake of an example though.  That is completely possible to not drudge up the past for sake of explaining it.    Anyway,  for the first time in 2 years, I forgot to ask for a copy of his labs.  : 0  Serioulsy.  I am shocked with myself.  An example of how my busy life is starting to effect my mind.  I need to be careful with that.  Gary and his treatment are pretty high up on the list.  Not that it is a big deal but I just really couldn't believe it.  I was to busy watching tv while he slept. LOL  Bad mom.

Gary has been having a little trouble sleeping.  Like the other night when he stood at my bedside screaming for what seemed like hours he hated me.  "I hate you  I hate you I hate you. I am sooooo mad at you right now". Over and over again.  I ask all the tender questions, "why honey?" as sweetly as I can but he doesn't even hear me.  So I stop.  He suddenly will snap and say instantaneously, "I sorry Mom."  And that it that.  He hugs and kisses me and snuggles in bed with me.  Swollen swollen face, all itchy, going crazy.  I know he doesn't hate me,  he hates it.  He hates JDM.  He hates the medicines.  Nothing personal.

Infusion Center Bites Sometimes
I usually don't let it in, but on a subconscious level, it gets in.  One curtain over, a nurse was helping a Dad with some procedure on his baby.  I hated it.  The baby cried and cried.  High pitch, low pitch.  No matter, you hear it a lot in there.  But it went on and on.  Well, what seemed like that.  Suddenly, I was so stressed out.  My insides knotted.  I felt hot.  I felt dizzy.  The room was whirling.  I just wanted to scream, "STOP!!". I wanted them to pick him up, give him a break!  I think they were flushing a port and placing an ng tube or something.  I hated it.  I even cried a little.  The nurse came in to do bp check and asked if I was ok.  I desperately wanted to say no but I knew.  I knew that Gary had been through similar procedures.  I knew that it is sometimes necessary.  Starting and stopping again wouldn't help either.  Just getting it done, then its over with.  But maternally it wreaks havoc on my emotions when it is not even my child.  It's a matter of humanity and wanting to scream STOP  just STOP doing that so that little baby will stop crying.  Pick him up,  love him.  All to which I am sure the parents do and did.  It is probably way more difficult for them but they are also really into what was being learned.  He would need to go home and do that by themselves. So crying or not, it had to be done.  Sucks.

CALCINOSIS
I hope Enbrel works and works well.  It's just getting worse. So many of them.  All over his chest, all in his tummy, around his elbows, in his legs.  Tops of knees a few have come, even another on the top of his shoulder.  Some seem smaller, others big.  Above his hips, but not around his lips.  OK  this is turning into some kind of sick,  twisted, rhyming children's story book.  I am gonna stop.  But you get the picture.  No open wounds though from it, as of yet.  Threats of it but they also seem to simmer down when they get to that point.

Clinic in July

We had our clinic appointment.

Think I shared I had a bit of anxiety with this one due to the last appointment but all went well.  Busy day at the hospital that is for sure.  Our appointment was at 1030 but we weren't seen until 1130.  I don't mind.  As long as when I am late, they extend the same courtesy.  They do! They are great (SCH).  The interns were sent in to entertain us until our main doc could get finished with her last appointment.  I made the mistake of saying that out loud and immediately apologized.  The intern doc giggled and said I didn't have to be sorry because it was true.  It was nice to chat with her because she was the same intern who was in on the UP'ing of Gary's meds.  I was completely candid with her telling about the last appointment.  I told her I went home and cried my eyes out because I felt like I should have been less willing.  She nodded like she knew my pain because she had heard or had the same discussion.  She said she wished I wouldn't feel that way but understands this is all so very important.  We are all working to spare Gary from the uglies of JDM.  Not just following what everyone says is not always easy.

LUCKY, GRATEFUL, and TOTALLY AWESOME
Last month when Cure JM visit our lovely city of Seattle, they brought with them the leading experts.  My little  complicated Gary was discussed!  YES!  I knew it.  I was so happy for that.  I am so happy that they did.  It is so great to be able to get that prespective.  As a result, Gary is starting a new shot.  This is the one that was up in the air with tacrolimus back when we started that.  Enbrel.   I actually blogged it, linked it, and new about it.  Our doctor said she didn't remember talking about it with me but I refreshed her memory.  So battle is on with the insurance company. They will cover it but only through a mail order and it comes with a hefty hefty co-pay.  Our family will not be able to cover it.  But it will work out.  We also talked about starting him back on the tummy protector for acid reflux, why they think his voice keeps going.  We got something strong for thrush, so we will try and get that kicked out as well.  They tried to run labs on us again but I assured them  labs were done at the infusion, dig a little deeper.

Overall, where we have been, he is doing well. I HATE the way the calcium looks under his skin. You can see it around his elbows now.  It seems to be more prominent.  Not bigger, just noticeable.  He has few lesion looking spots on a few of them but no big deal, yet.

Maybe Enbrel will be the answer.  Our doc looked at me straight
and said, "we have just about tried everything now."  Well that is just as fun as hearing he has a severe case of JDM.  The best news however, we are tapering back down off of steroids!  Yes thank you very much!  3ml this week, 2ml next week, settling back into 1ml week 3.     Let out a big sigh for that one : )

Joyfully, give it to God

Tomorrow we have our clinic appointment. I am going to beg her to please lower his steroid dose. It really has changed his personality from sweet to sour. He is so angry all the time. Least down to 3 ml's.

Otolaryngology

Funny when I hear myself say it.  It takes awhile to determine.  How bad does Gary have JDM.  You know, like, "well he has a mild case".  I always wonder because the comparison is lacking due to everyone is different.  So classifying it is always something I am waiting to hear from them (the doctors).  "So tell me about his history" they ask.  I always replied with moderate to maybe severish.  No official.  Yesterday they handed me an in-take evaluation.  The nurse prints it out for the doctor so he can review his next day appointments.  He grabbed that sheet to give me his email address.  He jotted it down and let me take it home.  Of course I read everything three times that they send home with me.  And there it was on the referral note, Severe juvenile dermatomyositis with progressive hoarseness.  Leaves a mother feeling pinchy.  I don't know what pinchy means but a hurt, dammit numb feeling?

AWFUL
I thought yesterdays appointment would be a open wide, let me look down there a little,  and lets talk.  It wasn't.  The doctor put a tube down his nose to see his cords on the tv.  He had a hard time getting a glimpse of them because Gary was screaming.  It only lasted a minute but that was enough to tick my little man off.  He gagged and cried.

I really liked the doctor.  He was very nice.  He said he caught a glimpse and what he said is he see's inflammation.  His vocal cords are inflamed.  He talked about it possibly being acid reflux.  He said if he had a growth or calcium on a vocal cord, you would be able to see it.  He kept reassuring me with, "don't worry, its nothing bad."  Did I look like I was about freak out?  LOL   The doctor was so sweet, but honestly, I save it for the car ride home if I am upset about something.  I kind of giggled when he kept saying that.  But I very very much appreciated his bedside manner and gentleness.  He said he would write a report up and send it over to our rheumatologist.  He wants to keep an eye on things.  He said he think he would benefit from voice therapy.  Well, alright.  We are not going to put him back on his lanzaporozal until we hear from the rheumatologist.  I told him that the hoarseness started in Nov. of 2010.  In September of 2010 they took him off of the lanzoprozal hoping for better absorption of his medications.  Interesting.

I find it a little funny that the little things they have come up this past year are not really blamed on JDM.  I explained that too him.  That is a symptom of JDM.  Loss of voice.  He said yes, but there are 37 other reasons you can cause hoarseness.  OK.   Really though, lets eliminate half of those right now.   Inflammation is JDM's favorite thing.  Tap. Tap. Tap.

Checking IN

Summer is in full swing.  We are busy.  I completed my marathon here in Seattle.  I am still working on writing up my race review.  We had a great forth of July.  Gary is doing good.  He has been grumpy.  His personality is off.  He seems very angry these past couple days.  Our next clinic check in is next week.  Today we see the voice doctor. His voice has been doing better.  But I am certainly not going to pass on the appointment.  We have had to give him his nystatin for his thrush at full doses this past week.  He has been waking up with white gums.  They are covered in thrush.  But that is also getting better now.  Calcinosis.  Hmm.  What do I say about it.  I don't know.  It's still there.  I thought it looked a little more grainy on the outside of his neck.  Maybe on the inside of his thighs it feels less solid.  He has some off his tail bone that has increased in size.  His cuticles are clearing up.  Still has a jagged a couple nails but overall good.  He has been a little more tired but energy levels are still up there.  He fell asleep face up, like some kind of crime victim, on the garage floor over at Aunties and Uncles.  They came and got me,  and there he was, asleep.   He kept complaining to his cousin, "I so tired".   I think someone is growing bigger : ).   This weekend we have Mommies STP race. The kids are excited because we booked a hotel with a pool.  Remember Mommie kids as you float around for the day, as Mommie pedals 200 miles : )  Excited!   Wanna know what I am not excited for?  That next clinic appointment.  I know all will be fine and I am totally over last months appointment discussion but its still a little stressful.

*SUNBLOCK FAILURE*
On the fourth of July, we went up to a pool and swam, played games for the day.  I was in charge of sunblock.  So I had a few different kinds,  and I constantly layer up Gary.   Everyone was putting it on because sun burns are no fun.  Well the can of sunblock  made by Aveeno, Sweat proof, Water Proof, 70 spi or whatever it is,  failed.  Everyone who swam was burnt.  Luckily, I usually layer Gary up with more than one kind.  So he didn't burn.  He also had his sun shirt and big hat on so that helped.  Who knew sunblock might not work.

INFUSION DAY IVIG & Pamidronate

We had our infusion today.  It went very well.  Smooth sailing.  Levels have smoothed out as well.  IV on first try : ).  Our nurse was again, 10 months pregnant but did fantastic.  She didn't even look tired.  She did give Gary his benadryl right into his IV with no dilution which burned like the hot acid in his vein, HOWEVER, he quickly went to sleep like it was a night night medicine.  The IVIG going in you can tell are hard on him.  He sweat and sweat and sweat. His little heart was popping out of his chest.  You could see the blood pumping through his neck.

Gary's calcium deposits I think are looking better.  Always hard to tell.  Energy is good.  He does have a scratch on his eye that faded in and has not acted like a scratched.  But I am keeping an eye on it.  If it doesn't go away, we can say it is indeed an ulcer lesion caused by his dermatomyositis.  If it heals up, then  it was obviously a scratch.

I am having trouble concentrating.   T-Minus 3 days till marathon time.   Eeeekkkkssss.  Tomorrow we get to have dinner with all of our Cure JM friends.  Looking forward to it.  In regards to the drama going on with the foundation and the hospital,   I wait to give my opinion until after everyone has left town, LOL!!  Cure JM Mafia is in town.   You would be amazed what passion and emotion is behind mothers with this disease.  Then we are all surprised someone would say certain things.  Are you kidding me?  It's like jabbing a hibernating pregnant bear with a stick.   Not hard to get one of us to fly off the handle when it comes to gathering information on our childs rare disease.

Thumbs Down

*Thank you Summer for always giving me input*   It means so much to me!  Huggin you!  I need to catch up on your treatment myself.

Now on to the latest and the not so greatest........
Yesterday we had a clinic appointment.  There have been some changes in my life that I am very thankful for but has added a new element to my emotions and the ability to deal with all this.  I mention last week that Gary and I kind of have a job now!  So blessed to be able to bring him with me and help support the finances of my family.  Now it doesn't do very much for all the house work that needs to be done but hey, we will manage.  Just feel so excited and blessed to be involved with 18th Avenue Pasta!  I was able to take a couple hours off yesterday and get Gary in.  Here is where the element puts a crick in my ability as a mother to deal.  It was a complex meeting of sorts.  It took me off guard.  I had mentioned in my last post that I had called the nurse line to discuss whether or not doctors agree with each other amongst the department if changes are made.  She assured me all would be fine.   The nurse injected me with a confidence that they would agree.   Wrong.   Wrong-O!!!  I mean profanity, really.  Our main rheumatologist was miffed.  She burst in yesterday, gentle but in had a force behind it all.  Nothing, absolutely nothing at all was directed at me but I have a brain and can put two and two together to make it some of my fault for not saying, "hmmm, lets check with our main doctor before we make this change."    Big problem is I agreed with the increases.  Whole heart, agreed.      Main docs problem, she wanted to give the Rituxan a chance to work.  Now we won't now whether its the increase in medications or the Rituxan working if we see results.  I am just purely exhausted.  After a late meeting, and not being able to sort my feeling and thoughts out right away because I had to shift my focus back to working, resulted in a good long hard cry.  I am a little frustrated by all this.  I feel like I messed up by allowing it, fouling up his all of our efforts to get him off these drugs.  Yep.  I know its there job.  But its mine too.  I am so in favor of aggressive treatment, and often go on fear which maybe makes my decisions irrational because of my strong maternal connection to my baby.   I want him better.   I want this disease stopped.  Completely.  Not just some of it.  All of it.  His calcium increased since the treatments, which granted it has only been weeks.  He does have some nail folds that look good, and a few that look terrible in my opinion.  Like I said when you can see capillaries bursting without any instruments, disease activity is present.  We discussed his hoarse voice.  This month, some days, I was constantly asking him to repeat himself because I couldn't hear him.  We did an xray's yesterday to see if they could see any calcium that is causing it.  *Thank you Summer for telling me about how your voice does the same*  If they see anything, she will show a ENT doctor and see if they want to see him.  Gary's strength is great.  She doesn't thing it is from weakness of the muscles in his throat or vocal cords.  I want to agree with that but I can't be sure.  Think I need a vacation.  I would be very surprised at this point if they put him on Cytoxan with the Rituxan.  Not after talking to our main doctor.  I see both points of view of the doctors and the why and why nots.  Really hard to say, "hey I think your wrong" to anybody because I don't know either.  The doctor that made all the increases took time to look at the big picture.  I asked her if she saw his labs.  She said yes, and only one was elevated and they believe it was a lab error.  WTF?  Yes I said it!   I was told all of his inflammation markers were up, and were on a upward trend, which I had been tracking that too.  I reminded her another reason I had agreed was due to Gary grew.  When he was three, we increased all meds.  He turned four.  He is bigger.  Needs a little more.   Really people.  I went to a community college.  This shit is gonna drive me a to a looney farm.  Yep,  just lost all class didn't I?  Now that I have injected the vulgar of profanity into my blog, I will drop to my knees and pray to Jesus.  I ask He forgives me.  I ask for answers, protection, peace, and clarity.  I ask for strength and intelligence.  I am so very thankful, even in the midst of my knotted tummy, and tight heart, for the medical care we receive.  I am so very thankful and feel blessed in the midst of it all.  I ask He helps me focus on that.  I will trust.  I will love.  I will be thankful because I am.

  

Calcinosis

Gary is doing well since his Rituxan doses and steroid increase. The only thing that is bothersome is the calcium. It seems to be on the move again in my opinion. I am noticing more and they are increasing in size. I noticed on Monday night. Every couple nights we sit down before or after bathing (preferably after ; ) ). This time I called my husband in the room to see what he thought. It seems bigger, more solid in his thighs. Around his hip they were protruding enough you could see them without having to touch. The calcium around his elbows is doing just that. It seems to be trying to make a ring around his whole joint. He has a whole gaggle of deposits around tail bone. Now when he bends down you can see them quite well as to before you couldn't. Energy, TOP NOTCH. Pretty normal for a four year old I would say. Steroids have increased his appetite at first but he seems to have leveled out a little with that. I notice very little weakness. His voice is still hoarse, but has stayed the same. I thought he may have had a mild case of thrush again but I will continue to be vigilant with that. Both him and his sister had small small cold sores in the sides of their mouths. But no one was feeling ill, eating, peeing all the rest just fine. The calcium in his thighs is stopping me from holding him on my hip. If he straddles my hip, it presses on the calcium and I get an ouch. Great news is he stopped complaining about his ankle pain and knee pain. His toes are still crossing but we will keep an eye on it. Speaking of I's! Gary's vision is great. No signs of toxic effects from all the drugs. Check back in six months.
 : )  So while the calcium still continues at least his cuticles are looking better.  We need to give the Rituxan and the increase of drugs time to work.  The only aspect of that I don't like is we still are in search of what it is that will shut this off.  They say if the calcium is increasing, then process of his disease is still going.  I suppose keeping him healthy with toxic drugs of course until it decides to stop?  Everyday I have questions.  Everyday not even the doctors know.

We have been staying so busy. Gary and I started a job! Our family is now in the pasta business. We have done to local markets. The pasta is beautiful! My awesome cousin makes it. He started his company last year and asked us to join him. Gary is amazing when we go. We have long days but its only on Tuesdays and Thursdays. I am so thankful I can bring him along. I still need to make sure I am focusing on Gary and his treatment, but since he is with me that is easy to do. We have a tent we sit under so the sun is not to bad. Just need to make sure we are staying protected. It is difficult on a single income so we are going to do what we can : ). Summer vacation is coming so we will have more helpers.

Here is our pasta stand.
 18th Ave. Pasta Company

Still training for the full Rock n Roll Marathon coming up quickly on June 25th.  Still training for the STP coming up quickly on July 9th.  I did really well fundraising this week.  Thank you to everyone who donated so far! Almost half way there!   Here is the video we posted on our facebook in honor of donations.

http://www.facebook.com/video/video.php?v=10150193765533058

My Friends

Labs think they are climbing a mountain....

I remember a ride I once went on. It was one of those wooden roller coasters. If memory serves correctly, it was at Knotts Berry Farm in California. It was called The Ghost Rider. This was before Lexi & Gary. McGuire was just a baby. I never have been a big fan of rides. They always leave me feeling nauseous and in pain. How is that fun? This one was particularly good at delivering physical punishment to your body. I remember closing my eyes tightly almost the entire time. I remember screaming at the top of my lungs as it threw me around, twisting and turning, dropping and rolling. I took a few shots to the gut from the "safety bar". As the ride came to a stop, I went to exit. My hands were holding on so tight, I could not straighten them. It actually hurt to try and open my hand. The only fun part is watching the second part of my family enter encouraging them to go, it's really not so bad I say. Knowing there fate, and looking forward to their reactions.

I would still recommend it to anyone who hasn't rode the Ghost Rider. How could I? That is just plain mean of me. Your right, it is. But here is what it does for you as well. It gets you in touch with what it is like to experience the up and downs of situations that are not under your control. To be able to physically relate to human emotions and what is thrown at us. Sure you could say well I see it has a ride that hurts you unnecessarily, you can do without. But knowing I walked off that ride and I am here today and can relate that experience to my life is pretty useful.

 We had our second dose of Rituxan this weekend. We had the opportunity to check in with one of our doctors we hadn't seen in awhile. I was looking forward to her prospective. When we checked in on Friday, Gary was a good, but red. She did his examination and we chatted. I told her about stomach pain the is everyday with diarrhea. We had attributed it the tacrolimus medication. She asked about maybe having a diary or gluten intolerance. Problem is the tummy pain and poopies all started when that medication did. I asked about his thumb nail. It has been red and inflammed for months. The nail is started to look bumpy like it could be growing a fungus.  Very strange.  Overall she had no outward concerns out of the usual.  She asked me if how the calcium deposits were looking.  I thought they looked the same but while examining I had forget to mention I thought there may be a new one or a series of them on the joint of his elbow.  I apologized for not remembering that when she intially asked me.  To be honest its hard to know if they are new or not because there are so many.  It is becoming difficult to keep track of them.  Gary has one that is coming up under the skin on the back of his hip.  She measured it.  It is tender to touch.  Gary cuticles are not looking so great either.  He has one finger that looks like it is scabbing again.  That takes me right back to the beginning of his diagnosis.  

We decided in clinic to lower the steroid dose through the IV before the Rituxan. I think it helped a lot with the homocidal tendencies.  We were put in the same room as we had last week.  I think they do it on purpose.  I begged once again for a room with a view.  WE JUST WANTED TO SEE THE CRANKY!  They are constructing the addition to the hospital so there is a lot of exciting stuff going on outside that window a four year boy would love and be distracted by.  But he is not the only four year old boy.  Fine.   At least our roommate was not the same one from 2 weeks ago.  He was very quiet.  We had the same doctors too.  Not sure what he was diagnosed with but they were working to shut off his immune system as well.  I am sure our review by them would not be the same.  As soon as the Rituxan started flowing through his body, his personality and character changed.  A look comes over him and Gary goes away for awhile.  He is replaced with a not so pleasant character who's main goal is to hurl insults at this parents.  They had to listen to, "I hate you Mom."    "Your a dumb pig Mom."    "Mom, you shut up."   "Mad at you so bad wight now Mom."   *LOL   I am sorry, I know the normal parent would pretty much be shocked but I just can't help but giggle.  I try not to let him talk to me like that but he is just express how it feels.  We just have a Twist in Translation is all.

Track Marks

Poor buddy.  5 times to get an IV started.  He is doing better with talking about it.  Although he still tries to make himself throw up.  This time though, he told the nurses over and over again, he hated this.  He was really saying he hated them but we translated that to he hated what was being done.  There is complete truth in that. 

Our nurse rocked the house this time!  Very much appreciated her diligence.  She got everything going right away.  It was awesome.  We did not even start Rituxan until almost 7 last week.  Rituxan was hung and going by 5!  Our nurse who discharged us the next morning had everything ready to go by the time rounds came.  Our doctors said as soon as we woke up, to page them and they would come right over and get us out of there.   Well, it didn't end up happening like that.  After they saw the labs, it was time to talk.

THE TALK

Ugghh.  After the labs came back, and they looked them over, everyone is starting to get a little concerned.  She apologized for taking a little longer but she need to go over where we have been and where we are going and make some changes.  And she did.  I think at one point I did a blog about the great taper.  I can hardly believe we are headed in the opposite direction.  She said all his inflammation markers are up.  She explained she would like to increase medications.  She looked over at him and asked if the steroids always had that effect on him.  I said yes, its like throwing baking soda on a fire in a oven.  Back UP on steroids.  We went from 1ml to 4ml.  We have been paddling in the 1ml canoe for months and months now.  I remember when we tried to go completely off and it was a no go.  She increased his cell cept dose from 2.1 to 2.25.  A smidge.  I asked about methotrexate.  We increased that from .7 to .75.   Another smidge.  She gave me other things to think about like adding Cytoxan back in with Rituxan treatments.  I think someone just reached into my chest and ripped a part of my heart out.  It physically hurts.  This disease hurts my feelings.

The doctor went on to say she just wonders about everything with Gary.  She said they talk about Gary quite often.  They are having trouble understanding why things are going the way they are.  She said he is one of there harder cases.  She expressed the "what if" factor to me.  Giving me a glimpse of her own humanity.  She asks herself, "should I have started Cytoxan right away, as soon as you were diagnosed."  I reminded her that is was only 3 weeks after diagnosis we crossed that bridge.  Not one of us could have known he would go down that hard.  I told her Gary has clearly proven he has a moderate to SEVERE case of JDM.  Not light, not mild, moderately severe.

When I first get all this information, it never hits me right away.  I am level, focusing on the information the best I can in a logical manner.  I have too.  Then when I am alone, it hits.  I cry.  I was thinking about perspectives.  The perspective of at least he is alive, or look how far he has come, or we are lucky to have the care we do.  But you know what~  that doesn't take away the pain.  It soothes it to an extent.  Sure, there are mothers that have walked there babies hand in hand to heaven, and had to turn back to earth.  But you don't think that door is there in that room, hiding in the darkness.  A possibility.  Yes, I have no idea what it is like to have my child die.  I mean that is huge.  The imagination of that pain is more than I can put my arms around.  However, I don't think that should take away my pain or validation or take away from my situation at all.  Hearing, "think about starting Cytoxan again", puts another notch on that hidden door in the darkness. It is similar to hearing a Mom talk about a healthy child having difficulties with potty training or behavior problems or normal things.  I want to think, just be thankful he or she is not on steroids.  My pain should not take away from there pain or concerns of there normal healthy child.  They deserve the validation and the acknowledgement, just at that perspective.  Perspective is a great coping tool, but not a solution.  I think it is somewhat unhealthy for your heart and soul as a mother to completely lean on that all that time.  "Well at least he is not in the ICU or something terrible like that".  That helps a lot, but in the process of everything, I still am sad, and I still hurt, and I still need to talk about it.  I am so sorry to ramble on about that.  I just get tired of trying to down play what we go through.

Done with that.

So other fun things we get to think about.  She possibly wants to move the pamidronate infusions to once a month, instead of every three months.  Last time they said lets think about it, we were being scheduled.  So I am preparing for that.  I am learning there language means different things sometimes.  She also said to me three times.  If for some reason you need to come in before your next appointment.  Like she expect we would need to be seen before our next scheduled appointment.  It struck me not odd but maybe more concerned.  She wants me to make sure I advocate.  She wanted his MMF levels checked.  She had no idea you could even do that but apparently you can check if the cell cept levels are registering in his blood?  We knew you could get a tacrolimus level, but not a MMF (cell cept level).  She just wants me to make sure I push to have it done in case it gets pushed off with everything else going on with him.  Hopefully notes will be passed on properly.  The nurse called while I was typing so it was nice to talk to her about everything that was talked about.   She said, *wow, you went over a lot of things didn't you.*  I was curious about if they rheumatologists ever disagree with each other about treatments.  The nurse eluded to the fact that sure, but with Gary, she is sure our main doctor will agree.  Her notes said she thought he maybe having a mild flare.  So with labs headed in the direction they are, its confirming all that. 

So in review,  will we need to start cytoxan again, along with Rituxan?  Will they move the pamidronate infusions to monthly?  How long will be on this increase of steroids?  When will his labs start heading back down?  I will ask Gary and get back to you.  I wish a crystal ball would work but God knows so that is good enough for me.

Rituxan Ran Again

We had our Rituxan infusion on Friday.  I was having anxiety a bit last week just trying to figure out why.  Like my last post stated Gary suddenly was doing so well, and on his own.  No drug changes, nothing.  Rituxan is a 11 hours infusion.  So that automatically bumps you to being admitted.  Before being admitted, you stop in at clinic for a little chit chat.  I was prepared to try and maybe wiggle out of this one.  The intern came in first.  I have seen her before in years past.  (Today is our 2 Year Anniversary!)   She took diligent notes.  She seemed to be very interested in every aspect of Gary.  It was refreshing in a way.  To be listened too.  She even entertained the fact that maybe, just maybe we would hold off on running the Rituxan.  I liked her.  She said she would go talk to the senior doctor, let her know how well Gary was doing and she would be back.    We were in clinic for quite awhile.  But no bother.   The senior doctor came in.  We had been seen several time by her over the years.

She had a much different take on everything.   She noted Gary had improved.  She was glad for that but it didn't matter.  We weren't there for what I thought we were there for.  She explained that in the Rheumatology Department meeting which happens every Thursday Gary was discussed.  Gary's main doctor had noted his slow down and his labs going up, but that wasn't her concern.  It was explained to me they were running Rituxan again sooner because of the calcinosis.  I was a little dumbfounded.  Oh.   ok.   Guess I can't argue to go home. The other bigger kicker was that this decision was made even though the labs we had taken a week before to have his B cells checked, had not even come back!   The B cells aren't back but they still wanted to run it.  What I don't know.  Why would they do that  if they are not being made.  What I do know:  They have been doing this a lot longer than I have.  Gary outward presence had improved, but he continues to get new deposits.  He even had some new ones in the top of his shoulder I thought I felt.   He has four new ones on the back of his elbow.  The ones in his hip that was effecting his walking a little I think are most concerning for everybody.  But he has been complaining less so that is a good thing.  Needless to say but she was pretty confidant.  We were able to talk about Gary's voice.  We have lovingly nicknamed him Gollum.    Gollum is the little troll character from Lord of the Rings who has a raspy voice.  He literally will lose his voice.  I asked if the calcium on the front of his throat could be effecting his vocal chords.  She worked through it and tried to get a feel if the deposits were that deep.  She talked about doing a xray to see just how deep they go in.  Even if they knew that is what was making his voice hoarse, the fix would be surgical removal of the calcium.  Not necessary at this point.  She was pretty sure however, it wasn't possible.

After an hour and half in clinic, we went ahead and checked in.  It didn't take long to get admitted.  I informed  them that it was our two year anniversary this weekend, and we would love love love a window room. Children's Hospital is currently expanding.  In front, was a large crane.  A cranky!  When we pulled up, Gary was so so excited.  Did we get a window room?  Of course not.  Quite the opposite.  I even told them,  "what are doing?  I am not kidding.  I wanted to window."   NO.  We were put in the room with the cutest little guy.  He was about one and a half I would say.  He wasn't very loud or anything so what can you do.  Just go with it.

*Nurse review*  First nurse who we were checked in with.   F.   Fail.   She did nothing.  I believe she putzed around so she did not have to deal with the infusion at all.  We had this conversation in the beginning about angry parents and medications not coming from pharmacy fast enough.  I said something to the effect of "don't take it personal".  She laughed shyly as if to set the stage, "well I do take it personally, its out of my control when the orders and medications come."  We got into the room at around 4.  She shifted out at seven.  The only thing we accomplished was the IV start.  I even heard her take the call that the Rituxan was ready at 530.  She apologized and said she wouldn't not be getting anything started because she had other patients.  She said it wasn't safe.  I just somehow don't believe her.  Our next nurse was so VERY VERRY good! So she made up for it.  When the nurse came to say, "I'm going home, sorry about the delay".  I said, "great, thanks."  Think she got the message.  Right away she started the premeds.  She started them wrong but at least she could right down she did something.  She was suppose to run the benadryl but got the steroid going. I assumed it was the right one because she gave him tylenol.  She was ready to go home.  Basically hung it up and ran home.  That's ok.  The next nurse made up for it.

**Update**
Just want to say I realize they have a important difficult job.  Just because a nurse does not do things in my time frame means there is a reason.  I  would rather the nurse delay our infusion then do it unsafely.  So I take it back.
http://www.komonews.com/news/problemsolvers/121605949.html

Our roommate at about 6:30 became motherless.  I heard his Mom say, "ok, I'll be back tonight."   I said out loud as she left the room and he began to sob, "WHAT?  NO  YOU HAVE GOT TO BE KIDDING ME".  The little baby sobbed for "Mama".  I just sat there in shock.   He cried and cried.  Sobbing for "Mama".  An intern doctor came in to ask me a question, I couldn't answer.  I just stared at the curtain with the very distraught child behind it.  "You people cannot possibly expect me to sit here for hours on end listening to the poor baby sob for his mother.  Do you know what it does to me?"   I mean it literally put my stomach in knots.  It's not my child, I have no business going to pick him up and care for him as he is all alone.  The nurses cannot stay with him.  The nurse KNEW IT too.  She knew that the Mom was going to be leaving.  That is why she gave me the "don't hate me speech".  It was really hard.  It puts me in a compromising, moral implicating situation.  How can I as a mother, an adult, a human being with even an ounce of decency let this baby cry and cry.  I tried my best to keep his video playing try and distract him from his abandonment.  His cries got sporadic as he tired out.  He would nap then suddenly scream out for "mama".  She never came back.  "Mama" never returned that night.  So all throughout the night he would cry for her here and there.  Grandma came in the morning to be with him so that was good.  I know he was safe but I can't imagine what the how the child must feel with whatever had him there.  He had  J tube and a central line so he was a frequent visitor of  Children's.  I don't like to judge people.  I know its not what I know, it's what I don't.  I just don't understand how they could do that to us.  My husband tried to get them to get us into another room but they explained it just wasn't going to happen.

*IV Start*:   We got it on the first try but note to self, Gary is having a reaction the numbing cream.  We numbed his hands and hours after the IV was done and in, he had a red circle burn looking mark on the top of his hand.  The nurse said, "yes, it looks like he may be allergic or having a reaction of some kind to it." That kind of stink because he hate the J-Tip which numbs with a quick air blast.  I hate that one too.  Looks like it hurts but I am not sure what to do at this point.  Wishing I would have done the port thing two years ago.  But at least we still have good access to veins.  Gary had lots of anxiety over this one.  He tried to make himself throw up he was so upset.  But after it was all over, he wanted his choice of a surprise from the prize box.  Well it wasn't around.  The nurse came back with beanie babies.  He looked at her and said, "those not toys" sniffling.  I apologized to her and said, "we have been doing this for two years now, he knows the ropes, must find the surprise box."  I think one day I will make sure each procedure room has that box.  It's full of all sorts of things like footballs, baseball hats, cars, ect,.  It truly does make the difference for children having IV's done.

At 2am Gary woke up.  He was hungry.  I always stalk up with chocolate.  It came in handy.  He ate a snickers.  Then some cookies.  And other things.  Oooppps.  Lots of sugar made him have a little glucose in his urine.  So they commenced with checking his blood sugar which was 344.  Wooops again?  Talk about bad mom, lol?   They talked to me about the possibility of why that is bad.  I tried to explain he ate a large amount of sugar.  The morning rolled around, they checked it again, and it normalized itself.  I asked the rheumatologists if I should be concerned.  They pssshhhhhed it off.  They said it was to be expected with all the drugs he gets.

We were all tired.  Gary was unstable.  They did a great job of discharging us and getting us out of there the next morning.  Gary had his first T-ball pictures that morning.  We were pretty certain we would miss them.  We made it however, in just the nick of time!   I put him on my hip and was running across the field because I could see them assembling for team picture.  "Wait!!!".  One of the parents spotted us, and held it all up.  Very triumphant.  Gary was good.  Pale, sporting his band aid but he was there.  I didn't want to push him but with the help of the steroids he was feeling energetic.  After the game he was his typical unpredictable, homicidal, psychotic, steroided out four year old we all run and hide from.  He cried and cried and temper tantrum'd a whole lot.  The next day he was angry.  He even told us he wanted to kill us.  Oh good.  Let's choose a different hobby Gary.   We had done some grocery shopping out of pure desperation.  We had no food in the house and was suppose to be celebrating Mothers Day the next day so it was a truly we had too.  We bought him a little golf set.  When we got home, he didn't care it was pouring down rain.  He insisted.  I felt so bad for him.  He just doesn't know how to express how he is feeling and it comes through.  So there, in the pouring rain, cold and crying he played putt putt golf.  I bet he has such a hard time understanding the way the drugs make him feel he does whatever feels good.  It was pathetic.  His beautiful sister, who is so amazing with him, stood out in the rain with him, holding a umbrella over him.  Helping him with his every move.  We all would have done it but Gary chooses who, and he chose her.  She, in her nine year old beauty, is going to make one fantastic mother herself someday.  So beautiful and nurturing.

The next day we woke up and celebrated Mother's Day.  Gary was a little better, but still feeling very aggressive and very angry.  Breakfast in bed, awesome cards!  : )  LoVe.   We went down to see Grandma and bring her mothers day stuff.  She wasn't feeling up to coming over so we came to her.  Gary enjoyed stopping in.  He wanted to stay and play.  So cute.

We came home and family came over.  We celebrated Mother's Day with my Mom and sisters and celebrated McGuire's 12 birthday which is on Tuesday.  We had a pizza off at McGuire's request with him being the judge.  It was  a lot of fun.  My son has such a big heart.  He felt terrible not being able to pick everyones pizza as the winner.  He told me later he didn't want to do that again.  LOL.  I tried to tell him it was fun and not to sweat it.  So blessed to have a good family.

It's all still really tough on our family.  I find my family sometimes doesn't want to talk about what is going on with Gary.  I still have days were I feel upset.  I feel upset over this whole Rituxan thing.  I need time to recover.  It is really hard on our family. The other kids do there best to understand but all's they know is they have one angry little brother who throws grand tantrums that are loaded with the pain.  Not physical pain but pain you can see coming from his soul.  I know it will bring us closer though and open us to feeling and emotions we otherwise wouldn't have the chance to deal  with experience.  Without it, we wouldn't grow and learn.  God grand plan is at work.  I can't wait to see where he leads each and every person in my family with what we have been through with Gary, and where we are going.

Great Weekend

So Gary has been doing really good.   He had a much better weekend then he did last weekend and this past week.  His skin looks really good.  So I am feeling better.  He still has a hoarse voice but his energy and walking up the steps have improved over the past few days.   Welcome to my roller coaster ride!!!!!!!!!!!!!!!!!!  My husband and I agreed to watch him this week, see if he maintains his improvements.  I wonder if his levels improved.  Not sure it works that way but we are feeling a little better at least.  I still think it is important to run the Rituxan again.  I am assuming they want to do the infusion again because those b cells are back.  If they are not back, depending on how he does this week, I would like to think its ok to hold off.  But then again, what if its the good ol, its not what I can see, it's what I don't see.  From Fear to Fun, back to fun then rear ended by fear again.   What would you do?

Rituxan Again

I didn't hear from our doctor yesterday so I put the call in today.  I don't like to wonder.   Not about Gary and his treatment.  It drives me bonkers.  Unless I am extremely distracted, the bonkers don't get me.  But it was getting me because of how I left feeling.  I called the nurse line.  The nurse called me back an hour later and left a message.  She said that she was in the Thursday staff meeting yesterday and it was agreed by everyone he would get another round.  His last dose was 4 months ago in December.  We were trying to shoot for every six months.  I just hope this isn't a sign that its going to eventually stop working.  I'm gonna go eat a donut and think this over.

Clinic April Appt.

So despite a few labs that popped up, Gary's doctor didn't seem to alarmed.  I am still sorting through this as far as how I feel.  Upon examination, she found calcinosis to be a tender point in his hip.  She doesn't seem to think it is from progressing weakness.  She mentioned his hip might be a little tight, but once she hit the calcium, that is when he complained.  Obviously that is not a good thing being that the calcium is interfering with the way he walks but at least it doesn't seem to be that his muscles are effected.  I think.  I still don't like his energy level change, and the fact that he has been using extreme caution on stairs and getting in out of the car.  But still handling the action of a step fine.  Not has great has before but fine.  I guess at this point I am going to keep a close eye on him.  Even if a lab pops up, making sudden changes in medicines or treatments isn't what I want to go through either.  Having to wait to see if a new med would work ect,.   We had labs done again to see if Gary needs another round of Rituxan.  We should here back today if that is the case.  She said she noticed a few changes in his capillaries but overall, from what she can remember, they look better. All medications will stay the same.  Toe's are still crossing.  Just for information purposes and documenting:

• Crossing Toe's: *Note orthopedics said it could be a muscle imbalance, translation weak muscle.
• Overall Tiredness
• Complaints of ankle and hip pain
• Skin-I think looks the same purple reddish but overall no ulcerations of anything like that.
• I noticed this month bursting capillaries in his nail folds but by the time we got to the doctor they had grown out (meaning the capillaries damage,  burst, bleed, then dry out and then heal under his cuticle. These are very small so its a matter of knowing what to look for.)
• Elevated Aldolase level.  

Auntie came with me to the appointment yesterday.  She said after we were done I didn't do a good enough job communicating my concerns and description of what I have been seeing and what I was feeling.  Hopefully I will catch her on the phone and at least get to say  my Mommy Tummy (maternal instinct) are feeling funny.  I have bells going off right now.  I try to stay rational but it is such a tricky action or emotion to deal with.....decide what is necessary to become upset about and get things done or remain calm, rational, see how it plays out.  After hearing about his level that popped up a bit,  I was just amazed about how I could see it in his actions and feel it as a mother.  I think a lot of times too, our doctor doesn't like to make quick decisions, especially with everything that Gary is already on.  Gary's JDM has done a great job of keeping everyone on their toes.  I think its fair to say that she likes to discuss with the rest of the department if any changes should be made.  

I know there are families out there that have been doing this for a long time now.  Fighting this disease.  I wish I had a hint of where the end of it all is.  I suppose I get a little worn down.  You hear all the reasons of why its ok, but it doesn't feel ok to me.  I posted in the JM Mom's board something about listening to yourself.  If you think things are not right, your right.  It will all play out.  I don't care if Gary is running and playing.  I feel like its my job to keep it that way.  Conversations that end with, "well at least he is running and playing", I do find comfort in, but that comfort is short and sparky.  He still has a disease.  You might not be able to see it, and wonder what I am so upset about, because that is easy for you.  I see it.  I feel it.  I live it.  My tummy hurts.  So does my heart.  I do take comfort in God's love.  Peace will come over me when I let it.  I hear Him and feel Him and  He is there to help.  I take comfort in that.

More pictures from Make A Wish.  Anyone getting tired of hearing about it.  I'm not.  We received our professional pictures that Make A Wish came in and did.  They are amazing.  A lot of articles were done.  Their were a few things that were completely true but they did a fantastic job.  One of the things that was not true was the fact that Carpinto's Brothers (a local company who sells and delivers gardening and landscaping supplies and materials) delivered the play chips that went underneath the play set.  It is true they did, but Make A Wish PAID them for those wood chips.  They were not donated.  They actually were delivered and we had a small problem that I won't share.  I usually don't write letters to people but I have to say that I think I might let them know that they received quite a bit of local publicity from Gary's wish.  Maybe next time they might consider cutting Make A Wish a break?  : )  Anyway, here are a few of my favorite pictures I wanted to share.  Thank you Brian David Casey.  They are awesome.  I will treasure them always.   **Make A Wish called yesterday and wants to feature Gary's wish on there website**   ***Thank you to Apollo Sunguard, Dochnahl Construction, Rainbow Play Systems***    *****Thank you to our Make A Wish Volunteers who are amazing!  Ken & Cherelle did such a amazing job.  Cherelle and her husband were here working a lot of weekends.  Selflessly donating there time. *****

                                      

More for recording purposes..

Just to look at him right now gives me a feeling.  Not a good one, not a bad one, but one of restlessness.  I feel like I am on a little bit of a roller coaster.  I know we have been busy these past few weekends so I keep telling myself its because we are all tired out.  A four year doesn't get tired like that.  There is a look about his soul that seems tired right now.  Yes, I can see is soul.  I am his mother.  He played his T-ball game this weekend, (Saturday).  It took some begging to get him out there.   It was hard to decide if it was a social thing or if he truly wasn't up to it.  Once he got out there he seemed pretty good.  He ran the bases and had fun although he  put his hand over on his right leg at the front of his hip.  He seems to be fine when he runs but when he goes into a walk, it looks funny.  I know mentioned that in my last post but for sake of working it out in my mind.  We did easter eggs afterwards.  He has been very mellow.  It's is not usual for him.  That part drives me crazy.  Yesterday, after the egg hunt, he curled up in his Aunties arms and took a nice long nap.  He has been having coughing fits after he eats and his voice is hoarse.  It seems to have some to be hoarse a lot lately.  Someone asked me at the party if he had a soft voice because of JDM.

Gary (8) and his buddy Westly waiting on the buckets for their turn to bat.

Putting it all Together

Crossing toe's, and now a slight limp, hip swing.  Nothing drastic but something I noticed.  When your rheumatologist calls you on a Friday night?  Rutty Ro.  I admit at first I thought she might be calling to talk about our orthopedic appointment from the week before.  She asked how he was doing.  I said pretty ok.  She said some labs are up.  I quickly filled her in on the "OK" part.  He has been using more effort on stairs, going up and down.  He has been asking to be carried a lot more than usual.  The day before I noticed he was limping slight.  It looks as though he has a little hip drag.  Yesterday at t-ball he was grabbing at his hip a little.  He runs pretty good but as soon as he walks it goes into a hip drag.  It's like a swagger.  A change.  I sort of kicked myself a bit.  Gave myself the "trust your maternal instinct" pep talk.  I knew it.  When his toes crossed 2 months ago, I kind of had a feeling we were in store for something.  So we are due in for clinic appointment on Wednesday.  Our rheumatologist wants us to drop in at the lab.  She is going to check his B cells to see if they are coming back.  Although we just ran another round of Rituxan in December, she still wants to see if they are there.  (I really love blogging, it opens me to my thoughts and makes things clearer).  Here is the problemo I have with that or concern.  So lets say his b cells are back.  She is going to want to run Rituxan again.  His toes started crossing in February.  I have to imagine that the weakness of the muscles started a little bit sooner then effected his toes, hence the constant complaints about ankle and knee pain.  Rituxan was last ran in December.  If it is or was or whatever it is doing now as far as working, is it now?  He initially responded very well to Rituxan, but like the Cytoxan, has it found a way around it.  F E A R   

Make-A-Wish Foundation: A wish comes true for a Black Diamond boy | Slide Show

Make-A-Wish Foundation: A wish comes true for a Black Diamond boy | Slide Show

Infusion: Really need to look back and get the count on what number it is

Aprils infusion is down in the books.  I think that Children's secretly has kryptonite under their hospital.  It sucks mom's energy out.  Gary did well yesterday.  I decided to skip over the numbing cream for the IV start this time.  The numbing cream sometimes irritates him more than its worth.  We opted for a J-Tip start which is a numbing shot first then the IV.  We have been grateful, let me re-phrase that, Gary has been grateful I am sure to have the nurses getting those veins on the first try.  I know I am grateful because I hate see him going through it.  I liked my nurse.  She took the time to ask about Gary and how he was doing.  I just so appreciate that.  It's not a matter of I care if she cares, but its a matter of I know she can give better care if she is informed.  We got into a little conversation about keeping the blood pressure cup on, but no biggie.  I just need to make sure I communicate.  I told it her not one nurse as ever insisted he keep it on.  We have to keep him level, especially with steroids pumping in him.  She was kind about it, but you can't win with me.  I still will get irritated.  Gary turned his usual death white.  He complained a lot on the way home of needing throw up and having a head ache.  But as soon as we pulled in the drive way, he saw his Uncle Bill, his play set, and all was well in the world.  Then the steroid monster emerged.  Everyone bunker down.  He's here!  Gary's labs are holding steady. That's good.   It's not great because I have noticed changes in strength like stairs and pulling himself up into his car seat.  It has come with more effort and more sound.  Grunting and more effort.  Our clinic is next week.  I will get a chance to speak with our doctor about the orthopedic doctors report about his crossing toe's.  Sum it up, "I don't know" he said.  Even the nurse told me she got in there and read his report to our rheumatologist.  She came back and giggled.  She told me that is just what he said, "I don't know, all's we can do it watch it."   He wasn't sure if it is from JDM or what.  My favorite! The unknown and waiting!   Builds character right?   Gary is still continuing to have nail fold capillary changes.  When you can see if without magnification, that says something. We are still recovering from our Make A Wish weekend.  Still floating.   Now onto Easter?  Wait, not ready.  I need a vacation and money for it.  *Giggles*

And his wish is complete!!

What a weekend!  What a year!  What blessings.


I am just now recovering.  I would like to start off our "Make A Wish Weekend Review" by thanking the following.  Thank you to my family.  The Saas's, The Luddingtons, The Armstrongs, for being here pretty much all weekend and doing nothing by work.  The Luddingtons even spent the night of Saturday so they could be here at dawns early light.  We were all completely exhausted by days end.  But it was worth it.

It all started Friday when Carpinto Brothers delivered a large mountain of chips in our driveway.  There was some discrepancies involving the chips but I will not share.   (Ok so there was a little top soil or other material that was mixed in with the play chips).  But the next morning they drove all the way out to our house to convince us it was not what I thought it was.  So a little drama but we were happy that they guaranteed us it was just a very small amount of dirt.   Our family and neighbors came with wheel barrows.  It took us an hour to spread the chips.  That was it.  The Make A Wish volunteers were impressed with out quickly we got it done.  That's my family!

Sunday started early.  I invited 60 plus friends and family.  I was confident with my list because lets face it, people have busy lives and I knew I wouldn't get 60 people.  So no offense to anyone, but if you didn't see invite, you would not have come anyway.  I am the same way, lol.  I will be a little hurt if I don't get an invite but I know that with three kids, each of them going every which way, it usually ends up being a schedule conflict.  Just keeping it real.  I was completely grateful and amazed by the people who did come!  So thank you thank you thank you for taking the time to come and help our family celebrate this day.  Anyway, with almost everyone in my life I know coming to my house, well we had to get it cleaned up a little, make treats, ect.  My sisters worked endlessly.  On Saturday they even packed up Gary and took him to his first T-ball game while we stayed back and finished up with Make A Wish.  My head was all over the place on Sunday.  I was over stimulated and could barely stick with one task.  It was Gary's Grandma's birthday that day as well, so after the Make A Wish party, we also had to throw a birthday party.  My bed never felt so good that night.    Back to the events of the day:   8:15 the crew arrived to begin constructing the play set.  Uncle Bill and Uncle Ray worked closely with everyone to get it up in time for the party.  We had media coverage coming, we had the Fire Department, we had the Police Department coming......I literally need to take a break from typing this.  It's making my brain cramp!   Remember all the details.  But I refuse to leave out anything.   It's all about honoring the day.  I plan to include a video of the day.  Make A Wish had a professional photographer come and take pictures of everything.  I will wait till I get those so I can include it.  *Summer I did take video for you and my brother.

This is Officer Cripe.  After a lengthly conversation about Gary's disease and treatment, we discovered that his brother was diagnosed with Juvenile Dermatomyositis at the age of 5.  His brother spent over a year at Childrens.  He was treated by our same rheumatologists.  His brother is now a healthy 36 year old man with 2 children.  Serendipity.

The finished product.  

The weather sort of cooperated.  We had sun, hail, and rain.  But for the most part it was fine.  I think I will let my pictures tell the rest of the story.  My favorite part was when the Fire Department turned on there sirens and lights as they pulled up to our house!  Even our neighbors came out to look!  : )  So fun when there is no emergency.

In the News:
http://www.mynorthwest.com/?nid=11&sid=465053

TODAY IS OUR 2 YEAR ANNIVERSARY.  April 19th, 2009 is the first signs Gary starting showing of JDM.  Ummmm   Shall we celebrate?