Tuesday, March 29, 2011

For my Summer!

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


Thursday, March 24, 2011

March Infusion

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

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

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

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

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

Tuesday, March 22, 2011

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

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

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

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

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

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

Monday, March 21, 2011

Friday, March 18, 2011

Facial Swelling

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He looks uncomfortable but he was just concentrating on cartoons.  He seems to be really heliotropy (new word!) The swelling improved as the day went on.  It seems to return just before bed time.
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Looks like his toes are flipping you off!  Love this one.  Monkey Toe's.

Thursday, March 17, 2011

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

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

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

Monday, March 14, 2011

Wednesday Clinic Appointment

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

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

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


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

Make a wish my baby!

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

Wednesday, March 2, 2011

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

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

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

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