Monday, December 28, 2009

MRI

Our Christmas Eve MRI went smoothly.  Gary was a hoot on laughing gas.  The team was very impressed with his cooperation.  They said toddlers can be difficult because they don't like the mask on their faces.  But the mask was attached to a green balloon.  Each breath Gary took it would go up and down.  One inflation of the balloon, he thought that was pretty funny.   That first breath being gas made him want that mask on to make the balloon go up and down.  Giggling commenced.  It was precious.  It wasn't long before the laughing gas turned into the smell of the ocean, as the nurse called it.    My sweet prince was then in a sweet slumber.    We were asked to leave.  So Mom and Dad went up to the hospital cafeteria to grab some Christmas Eve breakfast.   He was returned to our room all hooked up.  He had what looked like a tube but really was just hold him tongue down.  That was hooked up to oxgyen.  The nurse came in and watched him.  As soon as he took a deep breathe she removed all the stuff from his mouth.  He slept for another hour.  We were able to get hisIV out while he was still out of it a bit.  The ride home he was quiet.  We stopped and got him a Christmas Eve Cheeseburger and chocolate shake.  He was quiet the rest of the afternoon.  He did well!



RESULTS
The doctor called 6 that night.  He said overall it looked good.  There are some muscles in his pelvic area that show signs of inflamation.  The doctor says there is no way to tell if its old inflammation or new.  So we were cleared to go down again on his steroid dose, from 4ml to 3ml.  That is a good thing.   Our next infusion is on January 4th of steroids and IVIG.  Then we have an appointment with the dermatologist on the 5th.  Someone actually asked me if he has chicken pox!  I am hoping the dermatologist has answers to what this particular rash is.  The rheumatologists bounce back and forth on whether they think it is from dermatomyositis. 

I have my own frustrations with the doctors.  I know they do the best they can but sometimes I think even they forget they are human.  I was asked, "do you pick out every little thing with him?"    Meaning do I pick out everything I think is wrong with him.   I replied, "why yes I do, wouldn't you if your child had a disease?".  No worries, just weeding thru an ego some young docs tend to pick up.   He had made that comment after I had told him about Gary seemed to be having a little trouble on stairs again.  It was nothing significant but a change.  I would think they want to know every little thing.  I would if I was a doctor. 

Last month they expressed concern over his liver.  The levels for the liver had come back down I guess because it was not even mentioned.  Since we are seeing the dermatologist next week, I will ask what he thinks about that.  I know he is a skin doctor but sometimes when something is off in your body, like the immune system, it can cause a rash. 

SPONSORS
I am so excited!  I got my first two sponsors!  Really excited!  I ran 10 miles yesterday and I have to admit, it was a rough ten miles because it included hill training.  I read the Austin Marathon is very hilly.  PRAYERS welcomed!  Thank you to my first 2 sponsors.  It put me in tears this morning.

Wednesday, December 23, 2009

Merry Christmas Eve Eve

Gary is so excited for Christmas.  He keeps hugging and kissing my leg, looking up at me says, "ho ho Mom? Predants Mom?"   He runs away in half dance of cheer.  So precious!  My older two just want to know how many.  They are very concerned with counting.  I refuse to wrap there's though!  Oh the anticipation.  We had a clinic appointment yesterday.  It went fine.  We just did a recap of what is going to happen with the MRI tomorrow morning.  The MRI sounds like no big deal.  Easy for me to say.  I am not getting the MRI, Gary is!  I have read about a few bad experiences but I am sure it will go smooth.  I will definitely bust out the soft Christmas jammies for him to sport tomorrow. 

I AM COMING OUT
I suppose it is not official until I am registered but I have every intention of doing so.  I have been running for the past 2 weeks, this is my 3rd week of running and trying to prepare my body for the Austin Marathon to raise money for Cure JM.  If I make it, most fantastic (meaning complete the 26 miles), if I don't, OH the utter humiliation but it was good to give it a go right?  So far I am up to trying to do 8 miles a day.  Yes, I run        ok  jog     is more the word   8 miles a day.  I did try to run yesterday and hit a really big bad wall.  I had nothing left.  Holiday shopping and baking kind of robbed whatever extra I had.  I tried really hard but I did two miles and said hmmmm no way.  I think it is important to listen to my body.  I have tried to up it to 10 but I am not there yet either.  But that was after doing 16 miles in 2 days.   I know, I am I going to do 26 if I can't even do 10!  I still have like 50 days left.  In 19 days I have completed 88 miles.     Oh Good Lord, Heaven help me!  I have pledged to raise 1,000 dollars  : ) .  http://www.firstgiving.com/garyvsjdm2 .  Wish me luck and send the power my way.

Wednesday, December 16, 2009

Eye Check

Gary's eyes looked good!  Back in 6 months to keep an "eye" on his vision.  Wink wink, get it?  Eye vision   ok     stop it 

Monday, December 7, 2009

A Christmas Present

We have our MRI scheduled for Thursday, Dec 24th.  It was the soonest they could get him in so I took it.  I figured we will do it early in the morning.  We should be home by noon.  It shouldn't interfer with Christmas Eve festivities.   If it does I know my family will be understanding.  It will be good for Gary to recover around everyone.  They are all loving distractions for him.   


An MRI, with a bow on it for my little man.

Sunday, December 6, 2009

So maybe he needed a pulse of steroid...

Yesterday Gary was feeling much better.  So much better that the pesky rash around his mouth and eyes is a lot better.  It looks like it has faded.  This is so great, and not so great in my mind.  It is great it's better, but it is not so great that he actually needed it.   I was really hoping he wouldn't.  I am sure we will find out next week if he will continue to need pulses?  He also didn't do any itching last night.   He slept a bit better than usual last night.  The night before was hard but he wasn't sleeping because of itching.  He needed to hold his balloon.  Every time the balloon slipped out of his hand, he woke back up freaking out for me to get the balloon.  Steroids can make kids a little crazy.  He is so cute.  We were watching Calliou for the millionth time, but a new episode.  This episode was about Calliou going to school.  Calliou hugs his Mom good bye and goes to school.  Gary turns around to mimic what he had just seen.  Then BURSTS out crying at the thought of having to leave his Mommie.   I had been entertaining the idea of getting a part time job again like I had before when Gary got sick.  To help out with finances.   Guess that won't be happening any time soon.   I couldn't bare to put him through anything like that right now.  He has to go thru enough. 

Summer, thank you for your comments.  I really love getting your point of view on everything.  You are wonderful.  I hope you feel better soon.

Friday, December 4, 2009

Rocky Road, Not the Ice Cream

Today we had our IVIG infusion.  All did not go as planned.  The infusion center has never been a picnic.  We try and make it one, but it never turns out that way.  I was 15 minutes late due to lovely traffic.  I never worry though.  People of Seattle just understand sometimes.  No one said a word about it.  As we settle in our nurse handed me the list of medications he would be receiving that day and what he takes at home.  They do this for verfication to make sure everyone is one the same page.  A lot times old med's are on the list or the wrong doses just because certain departments didn't do updating, no big deal.   So going over the list today it didn't strike me twice when I saw methopred (IV steroids) on this list.   I of course said oh we are not getting pulsed.  We are here for IVIG only.  He said really?   That is what they have ordered.  I said well get on the phone and call someone because that is not what I was told.  Definitely not what I expected.  So they paged the doctors.  The doctor gets on the phone with me.  He explains that something about missing a meeting so he doesn't know the explanation.  I couldn't understand his accent over the phone so I just agreed.  I knew that the nurse would help me understand and get it straight.  At that point we were definitely on for IVIG.  We numbed his hands up with the numbing cream and wrapped him up in warm blankets.  The IV team came.  Gary screamed and protested of course but it was good because he was distracted.  Calliou was on the television so he would do little spurt crys.  Distraction, numbing cream, and heat are the name of the game.  He did end up getting poked twice though.  I knew something was up when they took a lot more blood then they usually do.  We had just been in 1 week ago for labs.  A little bell went off in my head.  I paid no attention to it.  In the mean time the doctor had called me back to explain why they were pulsing him.  I got on the phone with him.  I could not understand a word because poor Gary was screaming.  I handed it back. I told the nurse to get the explanation.   We would go from there.  They explained that he needed the boost since coming of the cytoxan and starting the cell cept.  I felt frustrated (not at the doctors), let down, confused, and almost defeated.  We are down to 4ml on his home steroids.  I thought this was the beginning of the great taper.  I did not want him pulsed.   I want the effects of this drug to go away.  Life saving, yes.  Damaging, yes.   He has begun to slim down.  He has been having a much easier time getting around.  I can tell he is more comfortable.  UUUuugghghhh.  Not what  I expected.  So I settle into the idea.  It is what is best.  He needs it, he needs it.  It is hard when you think you are headed in one direction then suddenly go in another. This was only confirmed when my senior doc came down to the infusion center for a little chat.  She sat in front of me with a huff.  "I want to talk to you about were we are heading."   She told me his labs are ok,  not good, just ok and she is feeling frustrated.  During the past couple months Garys has showed signs of disease activity with a rash.  More than one rash in fact.  Gary's labs have been bouncing around, up and down.  Months ago I express concern about it.   She was great.  She did not want to go chasing a rash with harsh drugs.  It doesn't seem to be panning out though.  You know when you are baking something in the oven?  You open the door to check on the progress of your dish.  A blast of heat comes out when you first open it.  You stand back for a moment so you don't catch it in the face.  Yeah, well this conversation was like forgetting to stand back and taking the flash of heat in your face. 
 

Where We Go From Here
Gary still has good energy and strength.  His skin, not the greatest.  Levels, could be better.  Next week they want to put him under and give him a MRI to check for muscle inflammation.  After that we will be doing an ultra sound of his liver.  The rash that doesn't seem to be related to JDM could be a result of his liver throwing off irritation.   Since he did have liver level that was elevated they want to ultra sound it to make sure it's ok.  If it is irritated, she explained we would need to get him off the steroids as soon as we can.  This is where it gets interesting. 

Finishing the day out went a little rocky.  We ended up not finishing the IVIG.  He woke up from a nap.  He began having some kind of reaction.  His arm was red, and itching.  He was complaining of pain.  Flipping himself everywhere.  They paged rheumatology over.  They ran another round of intravenious benadryl.  Gary was very spacey walking out of the hospital today.  On top of that they gave him the HINI vaccine. 
Shewwww.  What a day.

Already the effect of the steroid pulse is turning the house upside down.  Please don't talk to the two year old.  He may spit on you in addition to kick, hitting, or biting you.

Wednesday, December 2, 2009

Holiday Kick Off

Yeah for it being that time of year again.  Boo for it being that time of year again.  I hope everyone had a wonderful Thanksgiving.  We did!  Lots of family over.  I love being with family.  We even got to meet family I have never met before so it was definitely good conversation. 

We have our IVIG infusion this Friday.  We arrive at 815 in the morning.  I purposely scheduled it early because last time IVIG took eight hours.  Gary rash on his face that I have been waiting patiently to go away on its own has not.  It is looking redder and a bit rougher.    His levels that were low from the cell cept came back up enough for us to increase the dose to max for him.  I told them he still pale.  They said he is anemic so to start him on a multi vitamin with iron.  His LDH level also popped up but we will just have to keep an eye on it.  His strength is excellent.  He has been a bit sluggish but I am sure that is from the anemia.  Time to serve this family up some liver.     Gack!   No way.  We have appointments set for a dermatologist and to have his eyes checked.

Monday, November 23, 2009

Spinning Plates

We survived the week of conferences.  Not what I expected but my children were made in God's eye, therefore they are perfect for His plans.  I can't ask anything more of my children but to give full effort.  I can't ask anything more of them but to be kind and loving.  Bad news is they don't meet report card guidelines and testing.  The most wonderful news is that I was told they were good kids.  My sons teacher told me that is very kind.  She has never heard him saying or doing anything unkind.  Not that he hasn't mind you, for he is a child.  But to be told, sure he doesn't learn like the rest but his heart is good, well that just pleases the peach out of me.  He is tender and beautiful in every way that I could possibly want.  I look at him and still see my little chubby, bald, rounded headed baby.  So innocent, so pure.  I hope he stays that way.  Words don't come and go the way they do for us.  That makes him all the more however.  I compare it to being blind or deaf.  It has heightened a sense in him.  A sense of awareness.  Aware of his own ackwardness and vulnerabilites.  Painfully aware at times as he is not like the other boys, but wants to be so bad.  I wish I were weathly.  I would have him privately tutored.  I would find what makes him work and how I can help him keep swimming.  Although on a humanistic level he his flying free. Academically, not so much.   So when you go to say,  "hey my kid is gifted", I can only say in return, "so is mine."   If you know me even a little I really wanna say "yeah yeah psshhhh fiddle dee dee kiss it".  My sons teacher, she is hero.  I have heard so many different things about her prior to my son entering her class I was completely mortified he was placed there.  I even went with my concerns to the principal about the situation before school started.  Wow, did I learn a lesson.  She was tender and sincere.  Organized and willing.  I just enjoyed our talk so much.  McGuire and her seem to be a perfect fit.  

Ode to being a Mother
So in the middle of my intense conversation about how we are going to help my son, the hospital calls.  I had warned her they might because they had called early and left a message they wanted to talk to me.  Well the clinic does not ring direct.  You call leave a message.  They return your call.  Sure enough they did.  Ms. R was very understanding.  Gary's lab work from Friday came in with some low numbers.  His white cell count is lower than they expect along with another level.  This is from his new medicine cell cept.  I was told not to increase the dose as planned.  We go back in on Friday for another lab.  Depending on his levels they may add another medicaton.  The nurse urged and warned me to stay away from sick people.  With this particular level down he is more susceptable to bacteria infections.  So the simple sniffles could spin off,    you get the picture.  All mighty God's protection be with us!  Has so far : )  Praises!  I did ask the nurse if these certain levels can make you pale.  He gets that irrey white when he takes a nap.  Enough to make me panic and have to call a relative for reassurance.  She said no, that is hemocrit looked fine.  He did a have a few unusal fits where he got very agitated for no reason, well a two year old doesn't need reason but none the less he was very angry crying, and very pale.  Just keeping an eye on him closely.  Personally I think they have failed to realize that maybe the cytoxan is still hanging out in his system.  Or they do realize that but need to medicate further until his body stabilizes and get use to his new immune suppressor.  Good times.  We'll see on Friday.  So, off the phone with the hospital and back to conference I went.

We are gearing up for Thanksgiving.  I have a lot of cooking and preparing to do in the next couple days.  I have Grandma coming to stay with us so I need to go around prying the gumdrops off the cushions and get this place in tip top shape.

AUSTIN, TEXAS
In February there is a benefit marathon/convention for the Cure JM foundation.  I am really considering trying to go.  We are blessed with a way to get there.  I just need to consider all the other expenses as well.  I really would like the whole Bradford family to come.  It is not just Gary that has been through it, we all have.  Although he gets A LOT more credit then all of us put together for all the needle jabs, ng tube insertions, icky tasting medicines, the pain, sleepless nights, and just being brave.  The marathon......hmmmm I think I might.  Twenty-six miles is a lot but so is not being able to walk and dealing with Dermatomyositis the rest of your life.  Even in remission, not knowing if it will come back.  Then when or if it does, starting all over again.   So am I proclaiming my intentions of this said marathon??,        almost.   Need a couple more days.  I can run two miles no problemo,   well sweaty and really talking to myself to keep going but I most certainly am capable.  Besides that it reduces the size of your hinney and it so good for you!  And just trying out my running legs, my hubby commented mine might be smaller.  LOL  sorry  TMI   So as long as I don't go into cardiac distress LOL.  

MASON
We keep close tabs on our celebrity friend Mason.  Mason we had the honor of meeting this summer at the concert.  Whenever we visit his blog my kids rush over to the screen and shout Mason!  The Smedley's link is on the right hand side of the page >>>>>> if you want to pop in.  Oh yes, and his Dad, Damon.  He is responsible for my attempt at running a marathon.   
Ye of little faith,  I hear your doubts!



Saturday, November 21, 2009

Still Good

Gary is still doing pretty good.  Last week I tried really hard to chase this rash down.  I even got on the phone with a doctor in Maryland to see what she thought.  She recommended a dermatologist.  I had called before getting on the phone with her to see if they could refer one but it didn't come up.  We were too busy talking about doses on his new medication.  I posted a few pictures on the board over at Cure JM  to see if any of the parents had any idea's.  I have a few concerns about active JDM rash.  Gary's levels are good and his energy are excellent.  Even if it is a JDM rash I wonder if there is much to do about it.  It really raged last week, but this week is starting to look better.  Once piece of advise someone gave me is that there son too had rashes come on go like that.  They are slow to go away.  Even if it was active JDM, his labs would have to reflect that.  Then I would sit here and wonder when the weakness is coming back.  BUT it is not.  The twisted world of having a child with Juvenile Dermatomyositis.  God is so good to protect Gary from all the sicknesses that are going around.  He is so funny.  I went to a midnight showing of New Moon on Thursday.  He was watching Calliou went I left.  He was watching Calliou when I returned at nearly 4am.  Poor buddy had taken a spill down the front steps.  It cut his knee up so he couldn't sleep.  Although as soon as Mama crawled in bed with him he went to sleep.  He slept till noon.  OK FINE  WE slept till noon.  AAawwww that was nice.


Like I said, which I am sure any parent can relate that has JDM.  How's is Gary doing? Great, he has a disease.  I know, I am bratty.   Yesterday we went to Childrens for a lab draw.  The kids had half day so they came along.  Oh joy.  Everyone looks at me like I am over populating the world.  We had daughters twin (Kapri, my best friends daughter)  with us as well so it just added to the effect.  They were running around putting on medical masks.  Squirting hand santizer.  If you need to make someone uncomfortable, let me know.  I will rent them out to you.  LOL  Just kidding. 

Looking Forward
I am looking forward to Christmas.  Not the money part but most definitely the decorations and being with family.  I am looking forward to Gary losing the steriod weight and the paleness from the chemo.  It freaks me out when he takes a nap. 

I have waited long enough.  It is time.  CHRISTMAS MUSIC is here!  Time to put the tree up as well.

Thursday, November 12, 2009

Good

So we officially are done with Cytoxan.  Yes.  We have started cellcept.  Today we were so so happy to meet our friend Lynn for lunch.  I like him and so does Gary. 


Flu Shots
Yooooowwwwwiiiieeee that hurt.  How does my two year old do it?   I am still sore.  My neck even stiffen'd up!  Too think what my baby goes thru. I get a shot once! And I am all whiney about it : ( .  But I was talking to my soon to be brother in law.  He said his was sore for about a week. Makes me feel a little better.  I was not prepared.  I was prepared to get the kids vaccinated but not myself.  When they asked me, "will Mom be getting vaccinated herself", I freaked a little and thought I really hadn't prepared.  To make a long story short, they told me to calm down.   What do you mean calm down. I have had three babies, you calm down.  LOL   Still thru me off guard.  Sniffffff.   Poor Gary boy, to think he gets this once a week.


What I Look forward Too
I look forward to Gary losing the complexion he has right now.  It has always reminded me of the kid off of Pet Semetary after he came back. Think I have mentioned that before.  I had a small panic episode the other day.  He had started to try and take a nap in the car.  I caught a glimpse of him and the white irrrey look that we all normally get when we fall asleep,   well you can imagine ones look when they are taking a lot of different drugs, especially chemo drugs.  He looked like a ghost.  Reality creeps in on me after all these months as if a reminder or as if to steal my faith from right out from under me.  He just looked BAD.  There I said it.  No matter how hard I settle into this all being his normal, that makes no difference.  I can't  get use to the look of the chalky white he gets.  It really can be scary.  I had to call one of my sisters who talks me back down, gets me to step away.  Reminding me of everything he has been thru.  As if I forgot and we need to revisit each day starting at day one because I can hardly believe it.  I am so grateful to have that support system in my life.  Someone or actually more than one to say,  CALM yourself, we know, we are here, it will all be fine, we hate it too.  He is really beautiful.   He is a crazy beautiful.  Emphasis on the crazy as well which is such a mind game in itself.  One minute pale as if he is ready to be barried, the next,  tearing my house apart.   LOL.


Mountain Valley Heating and Air Conditioning
So I plugged this company on my Facebook.  I will plug it here as well.  They are awesome.  They have blessed me and the least I could do is try and bless them back with a little advertising?  So, if you ever have trouble with your furance or air conditioner, call  Mountain Valley Heating and Air Conditioning, 425-226-0080.  Ask for Erik.  Thank you to tears for blessing us!

Friday, November 6, 2009

Last Treatment

Today has been a day.  We knew it would be because it always is.  It actually started with a phone call from my bestest.  Her daughter had a seizure and spent the day at the hospital.    They are home now.  We did not have the chance to meet up with them.  I am glad for that.  Part of me was hoping to share a room though!  :)   Prayers for Kaylin are welcome. 


Gary is doing good.  I don't know what to make of his itching and irritability (well at least they don't) but his strength is great.  The doctors are thinking about this being the last cytoxan treatment.   This is good, and nerve racking.  I think it is nerve racking for them as well.  His levels are good.  He does however have elevated liver levels.  Predisone can cause that so they ran some other tests tonight to help determine if it is indeed from the steroid.  The rash on his face and on the inside of his hand that is not related to the disease, they think it may be yeast or maybe a form of eczema.  I asked about him being on steroids and the likely hood that a eczema rash would survive that.  She agreed it would not survive it.   I am not sure what to make of it.  It is spreading slowly over his face.  It is nothing dramatic but its there. 


My niece Bryanna came with us to the hospital.  Unfortunately they won't let her stay because of a recently changed  policy.  It is just as well.  She nearly fainted when Gary was getting his IV.  When it was all over I turned around.  There she was CORPSE color.  "What are you doing!?  Don't do that!"    All's I could think is that my sister is gonna kill me for not listening to her and sending her out while it was done.  LOL   Weenie.  One thing we learned, Bryanna is not cut out for nursing.   


As the rain pounds on our window and lightening dances across the sky here in Seattle, Gary and I will snuggle the night away in our hospital bed.

Thursday, November 5, 2009

It has already been a month!

Wow, I can hardly believe that the month is up. We are due in on Friday for Cytoxan and IVIG. It was a good month. My only complaints are some skin activity we have been dealing with especially at night. I started him back on benadryl at night time because if I don't he itches and tosses and turns all night long. He rarely does well when waking up from a nap. He wakes up with swollen lips and fingers that are red and splotchy screaming for a good hour. What does it all mean? I don't know. It means its better than muscle weakness? Does it mean we are just keeping things quiet? Does it mean if he were not on all these medicines he would not be in good shape. Who knows. I like that we have or are starting to get use to things. We are finding Gary's normal. We are finally accepting it, if that is at all possible. We are just thankful. Thankful because without God's protection and blessings, I can't even try to go there. We still have our swords drawn against the swine flu. The Halloween party was impossible. I thought I would be clever and send Gary away from his all the germs. He was heart broken and ended up dancing the night away. A friend reminded me that I must put my faith in God. Let him be as normal as possible. So true.

So Halloween is over (Yes! I only like halloween but I love Christmas), Christmas is coming SOON! Yes, it is snowing on our blog. We are getting ready to decorate. Music coming soon as well. No! It's not too early!

Monday, October 26, 2009

Doing GREAT

Our little buddy is doing great! His energy continues to be endless. He is even having the normal throw yourself on the ground and bend into the shape of a backwards C tantrums. The rash on his fingers have quieted down a bit. We have a lab on Friday and our next overnight stay is Nov. 6th. We were in twice last week for blood draws. Gary's new thing is to not cry while getting his methotraxate shot or having a finger poke done. I am not sure how I feel about that because he seems to let it all out the rest of day. Gary hasn't been sleeping very well but we are working on getting him to sleep in his own bed. We will start tonight.

Gary and his sister have been practicing trick or treating. We are blessed blessed blessed to live next door to my sister. My chubby little Spider Man waddles on over and rings there door bell. Elexis put her robe on and a mask. They did it twice. The next thing we knew there was a doctor and a giant Winnie the Pooh on our porch trick or treating us. LOL It was so funny. Gary has the best Uncle and cousin. We spent the entire day getting ready for Halloween Party on Friday for the kids. The family worked together, it was fun.

McGuire finally lost his tooth! He had this tooth that pointed at you when he smiled. It finally came out. The tooth fairy did not come. Sometimes it takes up to three business days. Hello? Everyone knows that. I will need to tell Gary that before he starts losing teeth. 3 business days. Too bad their pillows don't take VISA.

Swine Flu
I was reading on komo that Obama declared the swine flu as a national emergency. Hundreds of people commented how the government is over reacting. I just thought to myself how our prespective would change if they were immune suppressed and had underlying health conditions. You know, like most of the 5,000 victums this flu has claimed. Yes, I know just as many die from the regular flu but how is that suppose to make me feel any better. So add the Swine Flu fact in with Regular Flu, and it just that much more of a risk.

Sorry about this but.....
Small Town Politics
I have never concerned myself too much with the in's and out's of politics. Since I have a family member running for a city council position, it has caused me to pay attention. Now I know why I never did before. It's ugly and it's sad. The length people go to. The things they make up in there heads. I have heard "why don't people get involved". Now I know. It is frustrating to see the mud slinging going on thru emails. It is frustrating to hear people accussing each other of things that are not true. It is frustrating having a major developer corporation come in here and put our town on puppet strings. The town doesn't take the time to really stop and look. Canidates running that have any involvement with the developer, at any level, from socially to business ties, should be labeled as a conflict of interest. Such nasty nasty campaigns have been ran. I experienced it myself. I had a button on at the Labor Day parade and a certain canidate looked at me and my children, rolled her eyes, and passing my kids up for candy all because of a button. I don't care how quick you are, what color your hair is, I simply don't want that ability of disregard of fellow citizens representing my town. It continued has we went onto Labor Days. A few woman rolling there eyes at me. Another came up and said we should vote for........anyway. I could write a book and go on and on. Like a forum I went to where one canidates closing statement was that of commending his opponet. He told everyone that either way, even if he wins or his opponet wins, they both have a lot to offer. His opponet was next to deliver his closing statement. It was shocking. He completely (with no tact) put him under the bus right after he had just finished praising him. He accused the other guy of not really wanting to be there and he questioned his reasons for running. Ok since your choosing to do it that way lets point out your involvement on business level that you have with the developer that is moving in here to bull doze our town? or How about your inability to listen to other people. You just like to hear yourself talk.

The easy thing to do. Don't concern myself. I think any and all should have to have degree in ethics, socially, religiously, in every concern of the word. I give it to God. May God's will be done.

Friday, October 16, 2009

Mind Games

My mind likes to play with itself. Gary is having a good week. His skin is still a little active. I don't like that much but his energy is good. He slept a lot this week. Last night and the night before though he had a tougher time. For whatever reason, he woke up about 11 and screamed and cryed for 30 minutes. Nothing I did helped. I finally gave him some tylenol and benadryl. I ask him every question. What hurts? He screamed in furious rage, "UP MOM!!!!!!!!!!!! " translation, shut up Mom. Really Gary? If you weren't already crying I just might spank you. Poor baby. He can't tell me what hurts, or what is going on. After the tylenol kicked in he calmed down. He has a runny nose. His face was so swollen and his skin was so red after he got done crying. One of my tactics is a shower. I have always put my kids in the bath or shower if they won't stop crying. It is the first place I want to go when something hurts or I don't feel good. It helped him though. If anything it can be a distraction when I can't get him to stop screaming. I may call the nurse today to run it by her but no fever, no weakness, not many other symptoms so I will keep an eye on him.



I was talking to a very good friend on the phone the other day. She said she just checked my blog and wants to know how my other kids are doing. Your wish is my command.



MCGUIRE

McGuire has kicked his 5th grade year off pretty good. McGuire has always been a step behind his age group. SINCE birth he has been delayed. But he always gives maximum effort. Homework has been a big struggle at home. It involves tears often. I think however, is adjusting to Mom being home all the time again. I think with all the frequent hospital visits an abscence was noticed by the older two. Well guess what, MOM is back. Butts in gear. Homework got easier as the week went on. We even got to sit down together and figure it out together. It is frustrating for me, but rewarding. We are throwing a Halloween party for McGuire and his class at our house. Uggghhh what I am thinking. This year for McGuire's birthday we didn't really get to celebrate too much because we just been diagnosed with Gary's JDM. So to make it up, I told him we could have a Halloween party. I even did video invitations. I burned 30 copies of it and put them in a plastic treat bag that had a pumpkin on it. Here is what it looks like:






ELEXIS

Elexis is doing pretty good. I was always concerned about her emotional status. She is stabalizing though now that we are going to the hospital less. School is going just fine for her. She also has homework. I feel like I have to prepare for a battle when they walk in the door after school. Nobody wants to do homework! That is ok. We are establishing a routine. They recently went to a 50's Dance at school. We had a lot fun dressing them up. We got creative. Elexis is also excited to invite a few friends to her brothers Halloween party. Yesterday we were watching old video's of her. SHE WAS SO CUTE. One video was when Gary came home from the hospital. My sister taped her trying to take Gary out of his carseat. She adored him. Still does most of the time. Here they are at the 50's dance:

I am looking forward to girls overnight trip to Leavenworth this weekend. My sisters and I are heading over to scout out possible wedding sites for next year. At the same time I am a little nervous to leave Gary. Hopefully, everyone will survive!

Saturday, October 10, 2009

Monthly Overnight Cytoxan/IVIG Complete

We are home! It went smoothly. Not as bad as I thought. We were put into our own room because of my flu symptoms. They took a lot of precautions. (I am feeling sooo much better by the way!) I was stuck in the room the entire time but no biggie. We spent two and a half hours up in clinic. Gary is doing very well strength wise. I told them that his skin was pretty clear all month until this last week. I noticed the heliotrope across his eyelids had made there return. His skin looked like he was having some disease activity or at least indicates that. I was slightly upset because the doctors and I had some miscommunication about medicine's given and doses. It is not easy keeping track of everything Gary has to take, but it is not rocket science either. They had added a blood pressure medicine last most month called enipril. The words CHANGE was used. Nobody explained that it was in addition to the blood pressure med he was already taking. Mid month I had called asked if I could reduce his steroid dose because of how great he was doing. I was informed I was already suppose to be doing the decrease. OK is it me or WHAT?! It doesn't take me long to remove myself from being upset or hysterical if you like. Everything happens for a reason. There is a reason for all this mess up. It does not matter that Children's has a news story in the media about a child that was given the wrong dose of meds and died. I felt more at ease after the senior attending came in and really didn't make a big deal out it. Gary's blood pressure is still more than mine, but I am still trying to figure out if it is a serious or something to really worry about.

I had gone down on his predisone by 1/2 teaspoon on Wednesday. It was one day I decreased it without really clearing it with them. They were fine with it but decided it would be better to stay at 5ml for the month. Because of the activity going on in his skin they decided to stop the lowering for now. They reminded me we had gone down quite a bit this past month and we can't rush it. RRROOOOAOAAARRRR! I know, I just need to be patient. I don't want this coming back and rearing its ugliness. At the same time, I think I have mention this before, its a double edge sword. Deal with the disease, or deal with the harmful effects of the drugs.

The Big Weigh In
So in my previous blogs I had mentioned how excited to see how much weight he had lost. He certainly looks slimmer. Nothing. Nada. He stayed the same in height and weight. I was disappointed and asked when is it going to come off. The doctor informed me he is still on a pretty high dose. Looks like he will stay there until this thing quiets down completely.

On our way out today he had his flu shot. The IV went the fine. He screamed and cryed. But we got it on the first poke. Well technically second because the IV nurse accidentally caught her glove on the IV has been pulled back to reach for the lab tubes and her glove caught it pulled back out. OOooppss.

Tonight Gary sleeps. He pulled me to bed at 6pm and just crashed. Poor baby. This picture should be nominated for Cutest Tushie in the Universe. Alright at least at Seattle Childrens.

Oh yes! I must add this in. Gary had no accidents at the hospital. We have been potty training for about 3 weeks now. The doctor warned me that he may have little trouble with all the drugs they give him. Nope he didn't! I am so happy about that. He even is sleeping in big boy underwear. I know, I am very brave. I figure what they hey, lets go for it.

Wednesday, October 7, 2009

Happy Birthday to my Husband

Today is Robert's birthday. Unfortunately I am sick so we were able to go out for a quick dinner with my sisters and their hubbies. (Alright, one hubby is hubby-2-B) Still fun to say. I drank lots of Jasmine tea and drank as much water as possible. Happy Birthday Honey. I am sorry I wasn't able to do much for you.

Gary I think is trying not to get it. He has been having crying fits after his naps. He wouldn't stop either. I gave him some tylenol and 10 minutes later he was ok. I suspect he may have a touch of something. My daughter is also not feeling good. I had to go to the school and get her. Yes I went with my hair piled on top of my head and in my sweats. I rolled right outta of bed. I thought Yeah! A bed buddy! But I gave her some tylenol as well and it made a big difference. She felt a lot better. So how come when I take tylenol my world doesn't come back together. I still have the aches and pains and snotties and hot throat and cough and head ache and...............Oh good golly miss molly stop the whining already! Anyway, Gary's skin is also acting up a little bit. I am not worried though. I am sure his levels will be fine. If they are not then we will see what the doctor's say. I hope I get my energy back by Friday, because that is our overnight stay at the hospital. I am interested to see how he does with potty training at the hospital. He has been holding it at night too which is good, but weird to me. He will always be my baby!

My lucky husband gets to have a part 2 party this weekend. Of course I was stuck in bed and didn't do much of anything for him :( There I go, whining again. Sorry

Sunday, October 4, 2009

In Memory


11/06/97 - 10/04/09

Wednesday, September 30, 2009

Pain Free

Here is a link I found from a mother whom I recently met at our support group meeting. We have been getting treatments since MAY. IV after IV after IV. Now I am told there was a doctor who specializes with pain management. I wonder why they don't tell you that is an option?

Here is the Link, www.seattlechildpain.com

There also is a video she took from the infusion center. It was very hard for me to listen to, so I extend a warning of caution. http://www.youtube.com/watch?v=go7Hz53LKb0.

I Told You


I posted this picture of Gary at Krispee Kreme eating a donut. As I stated in my previous post, we are tapering his steroid. He is down to 5ml in the morning and thats it. So his weight is starting to come down. I know I talked about how excited I was about that. At the same time it doesn't bother me because he is sooooo stink'n cute. Yesterday we had another blood draw. Gary was very scared this time. I had to carry him into the hospital. He usually fights me on walking. He is a big boy. He wants to walk. He practically ran the other way. Poor buddy. He was not his usual perky self. The great news was that HECTOR was there to do the blood draw. I was thrilled. I saw him out in the waiting room saying hi to someone and I said loudly, "Hector, Your here!". I know in the back of his mind he was thinking, who the heck are you?! But I don't care. I am sure he see's a lot of patients. We were in his lab room for about 40 seconds. That included, sitting down, chit chat, and the blood draw. He once again worked his magic and threw the needle in a vein. He throws it like a dart. It is the coolest thing I have ever seen. Gary already crying did not have to sit there and look at needle in his arms for over 5 minutes. When we go in next week for our overnight, I am tracking him down and taking his picture. He truly is amazing. I know I am going on and on about Hector, but the trauma Gary has been through is a whole lot. To have this one thing done so quickly is really great. So here is why I started off this blog talking about Gary eating a donut. I have been so aware when we are out and about. People stare. Sometimes they laugh, like "how cute". Sometimes they OOO and Ahhhh like he is a newborn baby. Then there are the ones that make send me to the roof. We were in the gift shop yesterday, waiting on the pharmacy. Gary picked out a balloon, handed it to the cashier and began to stroll around while his balloon was being blown up. Of course there is candy in a gift shop. He picked up a piece and looked at his Auntie, "Can knee Nannie?". She replied, "what did you find, candy? Yes, yummy, huh?". He said, "Yummie," and but it back down. A woman with her child in a stroller watched all this. She then proceed to tell her very small child, out loud, "Oh, you will not know what that is, not if I can help it." Something along those lines. I was across the gift shop and on the other side so I heard none of this. I came back around and my sister was upset. I asked her what was wrong. "People are freaks." My sister is just as sensitive about the issue as I am. So let me give you a heads up. Some advice. THINK WHAT YOU WANT BUT KEEP YOUR MOUTH SHUT, ESPECIALLY IN HOSPITAL GIFT SHOPS. You have to know that patients and there families are in there. They hear you. It is not what you know, it is what you don't know. With all that being said. I forgive that lady. Don't leave me a note saying maybe she didn't mean it that way or Gary doesn't notice so neither should you or don't be so sensitive. Oh wait, thought I said I forgive her? Ha HA yeah, working on that. This all just confirmed my suspicion about what is going thru other people's heads when they look at him. What did I learn? Never judge, and if I do, keep it in my head. If I do judge, I have learned this time and time again: The good Lord will show you. He will slip you into those persons shoes to help you feel your assumptions. He has bestowed that gift upon me time and time again. I am grateful for that. Well, when your in the thick of it all, it can be hard. Find joy in all things. Ok so my joy would be I know that Gary isn't the way he is because I fed him too many donuts.

Monday, September 28, 2009

Overnight is coming up!

Where did the time go. I wish we didn't have to go back for our overnight infusion but I have to explain it to myself like I explain it to Gary. "It will make you better." It will keep him better. Gary is doing fantastic. Potty training is surprisingly going very well. We are still working on getting him back to sleeping by himself. I have to admit though I miss him when he is not sleeping next to me. He is like my teddy bear. Gary is seeking his independence as well. He insists on walking with the family. That is such a good thing. We haven't needed any therapy, speech, swallowing, or physical. Gary is taking it all by storm. He is figuring it out all on his own. Once in awhile he doubts himself when stepping up stairs or slight inclines. I just have to remind him that he can do it now. I am so excited to see how much weight he has lost. He looks slimmer to me. I am head over heels to the moon and back excited for my babies face to come back. As adorable and cute as he is, it still is not him. It reminds me every time of what we have been through.

Gary's skin looks great. I have hardly noticed anything out of the ordinary. His strength is just as good. We check in next week on Friday the 9th at 3pm. We were worried about having to schedule on Daddies birthday but that won't be a problem.

Ok-gotta go do my prep for our Monday shot. Ugggghhhh. I complain every time which is rude. It's not like I am the one getting the shot. Speaking of shots, flu shots for the whole family are going to be coming up. Eeeeekkkkksss.

Love to All!

Friday, September 25, 2009

This is from back in August

It still makes me laugh!
Don't forget to mute music to the right.

I also put it on FB for a friend, so sorry if you have seen it already. :)

Tuesday, September 22, 2009

LABS today

We are scheduled for labs today. After the chemo drug, they need labs on the 10th, 14th, and 21st day. Besides closely monitoring his levels, it will help them determine the dosage for our next overnight stay. We have been busy running here and there. Yesterday we went with Grandpa and Auntie to hang out at the hospital while Grandma had her surgery. Gary was being carried by Grandpa onto the elevator. Suddenly he looked very worried. He tucked his little hands behind his back so no one could see them. Once again, he thought we were there for him and it was IV time. He really understands when you tell him things. I told him we were not here for him. We were there to see Grandma. He relaxed and asked, "Grandma? Tube? Oh." Luckily and to our surprise a friend worked on the surgical floor. She had said a few of her co-workers sat down and said, "did you see that cute little tanker out there playing?!". That's it. T-Shirt time. It's hard not to make things up in my head. I always am paranoid that I am being judged, especially if Gary is asking for a snack. Then my rational side kicks in and I really don't care. Gary is so awesome the way he is! Big, small, short, tall.

Last night was our methotrexate shot. OUUUUCHHHHIEEESSS. I always have ice cream on stand by. As soon as he saw me coming he locked himself under the covers. It was so cute. I hate having to do it. But as I said before, he understands. I told him it was time and that I would do it as quick as I could. He crys but his recovery time is just a few minutes. He is glad to have it over with, as am I!

I am happy to report that yesterday was a no accidents day in the potty training world!

We had fun visiting with Auntie Colleen yesterday. Gary managed not to break anything.

Krya's on TV!

Click HERE to watch Krya's Channel 8 news story. This is so great!

Monday, September 21, 2009

Today is

NATIONAL MYOSITIS DAY
Raising Awareness


SUPPORT GROUP

The Bradford's went to our first support group meeting yesterday. It was great. There were 6 other families there. We all went around the table introducing ourselves. I could have talked and talked and talked. I was so disappointed when it was done. I thought to myself, that's it? But we did go 2 hours. Our leader brought in a child psychologist to speak with everyone and answer our questions. She pointed out how it is much different for our family because Gary is so young. He cannot tell us what is going on in his body and how he feels. He can only express it. She said it is important to let that happen through playing. I immediately interrupted her and said, "is that why we have all been getting slugged with a plastic baseball bat? With no warning!?". We all laughed. One of my questions has been regarding Gary's pain management. I feel it is a little late for that since we are off our weekly treatment and on to monthly treatments. But, I think the once a months might be tougher. We will see. A lady gave me her card to email her or call her with questions I have about easier ways to get IV placement in. My favorite part of the meeting is when the group brought up the convention that took place in January. One of my favorite names came up! I could not believe it. Kya! When the parents started describing another two year old from Oklahoma who had just been diagnosed, I immediately interrupted and said, "what was the family's name?". As soon as I heard the K sound I knew immediately exactly who they were talking about. I felt like saying, "yeah, Kalee is a good friend of mine." LOL. But I couldn't say that in fear they would think I was looney toons. (Kya's blog is to the right or click on her link, I follow her religiously.) But I thought how neat, all the way up here in Seattle, Kya from OK came up.
Our meetings are going to be once a month. I can't wait for the next one! The three kids played with volunteers in the next room over. It was nice having adult conversation.

Saturday, September 19, 2009

LAB Results from Friday

Labs looked good! Gary's LDH level came back down. No abnormal results from the glucose test. Thank you Lord. I would have hated to add that one to the menu. Gary has been great as usual. He is back to the going NON-STOP. Never rest. We are even potty training. He is doing pretty good. I think I may have bought my last back of diapers! I mean we don't have it all perfected but everyday he is doing better. I even took him on errands and no accidents. He has most his accidents at home when he is too busy playing. He woke-up last night needing to go, but wouldn't do it in his diaper. He was confused and asked me to change him. We are really looking forward to his weight coming off so we can have our little boy back. However, hugging him brings much pleasure. He is huggable, and soft. He has a beautiful personality. "I love you Gary." He responds in surprise, "Me Mom?". Yes Gary, you. (Looking forward to my own weight coming off too, LOL, and I don't even have steroids as my excuse). Anyway, here is to smooooth sailing and praises all go to Him.

Special Prayer Request
We are asking prayer our mothers. My mom is having surgery on Monday. We ask that everything go well and she heals well. We are asking for prayer for my mother-in-law. We pray for the cloud to be lifted and she start feeling better soon. Please guide her to You and ease her pain.

Happy Birthday to my nephew Preston. He is NINE years old today. I love you buddy.

Monday, September 14, 2009

Labs on Friday

We have our first lab draw on Friday to check levels. His aldolase from last week seems to be creeping back up but I think it's Gary's way of driving Mom crazy with worry. So I am not. For the past two days he has had extreme sweating. The sweat was pooling up under his little eyes and his head was wet all day. He was running and around playing. I acknowledge that. However, none of the other children were drenched. They all look completely fine despite that it was warm. So I decided to call the doctor to ask if it was a side effect of the new blood pressure medicine he was on. The nurse said that it is a side effect and to make sure he is drinking to keep him hydrated. She later called back however, to say that the doctors said that is not from the medication. They want to test blood sugars when we go in on Friday. He hasn't had much trouble with the profuse sweating today so we shall see. I did read up on it and steriods use can cause diabetes. Like I said before, I will be surprised if it turns out to be that. Other than that Gary's energy is never ending. Trying to get a two year old to take it easy is not easy. He could step into the shower very easy last night but with all that he does, I would have trouble lifting my leg too! Geeessshhhh kid! :)

Friday, September 11, 2009

Wednesday, September 9, 2009

I wish I could....

Get into my babies mind to tell him that this is the last time for a little while. This is the last needle, just take one more. We will have a break after this last poke. Try not to scream and be as tough as you can. There is a reason why I can't. Because in the same breathe I would have to say I don't know if we will get a break from this. I would tell him SCREAM as loud as you want baby. You have every right. I can't make you any promises. How glorious it would be to tell a two year old that God does not give you more than you can handle. How wonderful it would be if he understood. The IV's were terrible. He screamed and screamed like it was the first time. When he blew his IV this time, he screamed. He grabbed for his arm as if a large hornet was stinging him. The nurse had just tried to push benadryl and it was a no go. She tried to flush it but for whatever reason it seemed as though the break in the vein was higher up in his arm. She tried to explain that it wouldn't hurt his arm that high up. I said "well something isn't right, turn it off and lets call the IV team." He immediately fell asleep after it was shut off. So of course we had to wake him back up to be poked again. He cried so hard he had the after burn cry. The intermittent deep sigh gasp breathes. Once the benadryl was finally on board he slept in a pink benadryl cloud and we were able to turn the IVIG up to max volume and get the profanity out of there.

Of course I arrive home with emotional luggage that I dare not show at the hospital. Not able to take another word into my brain without releasing. Who cares if it was the last one for awhile. It did not make it any easier. I still am not sure if we will make it a month without seeing at least seeing the doctor. When asked about his levels and the LDH being up their response was a bit comical. Both doctors seemed to try and search for words at first and fumbled, as if they weren't expecting me to bring up his levels right off the bat. I laughed and mocked them tenderly, "a a da be ba levels." They said the LDH could be up for many reasons. We will wait for the ALD to come back. I am not sure they will change course until next weeks levels come back in from that blood draw. They will also be checking his white blood cell count. The white cell blood count elevate when one is sick. Gary's levels go lower because they are knocking his immunity down. They have to moniter that level to determine next months dose of Cytoxin.

Through my eyes.

Tuesday, September 8, 2009

So far so good.....

We are in the hospital tonight. We are taking our last visit out with a bang. Gary will not have to come back for one month! We will still need to run up to our pediatricians lab for blood draws but this is great. The IV went terrible. Our room is small and we are sharing. But this is our last one for a month so we are going to tough it out. All the meds have been delayed so we have not even started any drugs. With a smile right?! When they put the IV in no labs were ordered. He had to get poked twice. HOWEVER, there as been talk of a gentleman by the name of Hector. Hector I have heard of a lot but never had the pleasure of meeting him. We got to meet him tonight for a lightening quick lab draw. You should have seen this man. He like threw the need into Gary's arm so quickly! If Gary had not been already crying, I don't think Gary would have noticed. It was truly amazing. HECTOR is my new best friend. I asked him if he would like to draw up a contract with the Bradford family. I told him when he walked in, "Hector, your reputation precedes you." Well it certainly did. I will believe the once a month thing when it happens. I must be in a mood. I am sure it will be. We did get some preliminary labs back and his LDH popped up a little. But that could still be ok with them. I am so happy though that they are telling us just once a month! Gary's limp is better. He is a little stiff after sitting for awhile and when he wakes up. It usually works itself out.

Since all the family is out of town, April has the kids tonight. Since she has three of her own, it is kind of a big deal. Thankfully our children pair up nicely. Just the same I am grateful.

Thank you to our anonymous angel for the gifts in the mail. Elexis got herself a new pair of boots that she was thrilled with. She pranced around the house with a big smile. THANK YOU. May blessings rain down on you. HUGS N KISSES! A really tight hug.

I can't hold it in, my baby sister got engaged. So if she asks, you didn't hear if from me! SUPER excited and so Happy for her. I love her so much!

Saturday, September 5, 2009

Adopt a Room

I just listed a couple new blogs that I am flowing. One is Hearts4Kyra and Josie's blog. I found an amazing website I want to share with everyone on Josie's blog. I was so moved by the vision of adoptaroom, I sent them a personal message saying how wonderful their work is! The website is www.adoptaroom.com . I shared with them that being checked into the hospital over and over again these past months always came with anxiety. The anxiety of whether or not we would be sharing a room or how small and uncomfortable it was going to be. I don't mean to sound spoiled or ungrateful. But when checking in, it would make my lip quiver thinking about how this stay would go. Let me know what you think of this website!

Friday, September 4, 2009

IMPORTANT ANNOUNCEMENT

Mute music to the right, then push play!

Thursday, September 3, 2009

Scheduled

We have another study swallow set for tomorrow at 10am. I told the doctors on Monday at the last appointment I have barely been using his NG tube. Praying they give us the clear to take it out. I am going to take it out for the study. I hope no one is too shocked when we show up with no NG tube in. He has been doing fine with food. I only notice small instances of some pooling in his throat. We are still scheduled to go in on Tuesday at 2 for our overnight. This one is going to be icky because we also get IVIG which means we are there what feels more like 2 days. Gary's methotrexate shot went very well. Daddy sat him on his lap and they played let's hide under a blanket. Gary was wise to us however. He cried but we were able to blame it on a bee. I rather have him scared of bee's instead of me! His energy continues to be really great. I was thinking how weird it is that we are tapering steroids, yet his mood swings and temper have only gotten worse. Yes, he is two. I remember. His strange limp seems to be getting better. The more he moves the better it gets. If he sits or lays for an extended period of time, that is when he is the slowest.

We had a wonderful time at the Mariners game last night. It was last minute. I pulled the kids out of school early. It was so much fun. They were sitting in the office waiting for me with this look of freight on their faces. Elexis instantly asked, "Are we getting our flu shots?!". I said, yes that's it, your flu shot. McGuire later admitted to me he thought it was about Gary. Sad! I laid the Mariner blanket out on the back seat of the car. I put McGuire's Mariner cap and Lexies pink foam Mariner finger on the seat. I hopped in the car before they did and put "Swing" on by Trace Adkins. It was so fun to see the look on their faces. They were so happy! My sister took Gary home with her so it was just us four. Exactly what we needed. They game went quick. The weather was perfect. A very special thank you to JP & KP! :). Thank you for continuing to bless my family.

Wednesday, September 2, 2009

Conversations, talking it out helps

We took Elexis in for a rash on her arm that we have been fighting for awhile now. She has eczema that bothers her and becomes infected at times. We paid a visit to our pediatrician to get some antibiotics for her. Of course, with Gary in tote. How do I explain Gary's energy. Let's just say I joked around with the doctor asking if he had any downers we could give our little rocket ball. Goodness. I think he was thrilled to be there because he knew we weren't there for him. I did have the nurse do a quick blood pressure check on him. It was high as always. I suppose it could be higher if he wasn't on medication to help control it. Our pediatrician who we have been with for ten years now is terrific. He asked how everything is going. I told him good. I let him know we got to take a break this week from our IV Cytoxin which is good. I did voice my frustrations I have sometimes with the many doctors we see and the many opinions that come with it. I told him about Gary's odd limp that I was concerned about. He did such a great job talking me down from the ledge. I expressed my concern about there choice not to investigate it further or at least really explain to me why we are going to wait and see. He pointed out to me that MRI, X-Rays, ect, are all great and fine. But what ends up happening is sometimes we end up chasing tests. We fill Gary up with a bunch of electromagnetic waves, (which no has proven is or is not harmful) to possibly find something. That leads to another test, and then sometimes another. He said, "We would rather treat the human, and not the tests." I told him that made perfect sense, but what if he had lets say, (oh mother's imaginations can think of just about any horrific thing, especially mine) calcinosis in a joint. He responded with, "What if they did? That is very hard to treat. There is not much they could do for him if that were the case. You wouldn't want them to preform surgery, that would not be the best for someone with on immune suppressing drugs." (I am a processor. I need to time to review the info in my head. I understand everything but the questions don't come to me right away. So when the doctors ask, did you get all that? Do you understand or is that alright with you? I just want to say call me when I get back on I-5, that is when the questions come to me. I feel like it is unfair to the doctors, because if I could think of what I wanted to say right then and there, they might get less of a bad wrap or rap ; ) ) We talked more about the different styles of doctors. He brought up our visit to Chicago. He said he got the report from Dr. Pachman's office. I was surprised! I hadn't heard anything. I have been so focused on his current treatment, I just figured Seattle Children's would get it. He said it didn't have any new information in it, and that Dr. Pachman agreed with his treatment. That was good news. I was happy to hear she agrees with the path we are on.

Monday, August 31, 2009

WE ARE HOME!

I just want to cry. God is so good. I am making chocolate chip cookies for the kids. When they walk in, the house will be filled with the smell of cookies and there Mom is HOME!



Gary did great. We have a few things we are keeping an eye on. Last night Gary took a two hour nap. When he woke up he was very unsteady. He would not walk on his own unless he was hanging onto something. It started working itself out but then he wanted to go back to bed. He woke up again, able to walk and take steps. However, the steps were not right. The doctors said that when he is stepping he is locking his ankle. The could not get him to say "Ouch" when they manipulated his ankle and legs. It looks to me like it is coming more from his hips but I am not sure. We are home though. They told me to keep an eye on it. If it gets worse I will be taking him back in before next week. Our next overnight stay is Tuesday. The are doubling his Cytoxin dose and we will get IVIG. I don't like the way he is walking funny but not complaining of pain. But I don't like a lot of things, so that doesn't say much. They still feel like the red fingers and face and feet are from the drugs.

Sunday, August 30, 2009

Next

So we have an appointment on Monday. My message said we might keep you overnight, we might not. Ohhhhh let it be not. It will depend on his levels and how he is looking. In my opinion, he looks great. I think our red rash as really backed off. I am always looking for it. A little to hard at times. His fingers were so red pink last night after the bath. I was thinking my goodness! Your fingers are crazy right now. No s t o p that. Then my daughter came in the room wrapped in a towel. Her fingers were the same color! I had put one of those bath fizzies in there bath. They were picking it up as it fizzed. It was hot pink. It temporarily stained there fingers! HA!

I found out I can make Gary suddenly bawl hysterically at at a moments notice. "Gary, are you going to sleep in your own bed tonight?". Not even preparing him for it works. This will be a slow process getting him back in his own bed. We were totally there before he got sick. I was really tough on him when he wasn't sick as far as you must sleep in your own bed. But given his reaction to a simple question says TRAUMA. He of course is a little traumatized with the whole thing. The best part is it will go away. He won't remember. Well I hope he doesn't. It is why woman keep having babies. We forget the pain. Speaking of babies, my daughter asked me or rather told me that she would like me to have a baby girl. I told her that Daddie and I don't make babies anymore. She stopped. "Mom, yes you can. Yes you do". I told her no, we really don't, not wanting to go into details with a seven year old. Suddenly she says, "Oh Mom, that's right. That's right," pausing to sigh and shake her head. "It's because of that surgery Dad had on his 'woo hoo' long tine ago, huh?". Yes, Lexi, the woo hoo surgery. Oh good Lord, the memory and the attention these children pay. So endearing. So embarrassing. I love it.

*Yes, it is 3:18 in the morning. Sometimes I just wake up. I hate that.

Prayers that we get to come back home this Monday instead of staying the night. Prayers for the children's first day of school on Monday. My heart is a bit broken they are heading back to school. The summer was like lighting. A fast flash. This time next year, I hope we are able to make this summer up to all three of them. Each year we have been going to Fish Lake and camping. We didn't get there this year but that's ok. We are always on the look out for our favorite, a tent trailer. Our family loves to camp. Ok, I love to camp. Anyway, I would love to be here for when the kids get home from there first day of school. McGuire is in 5th grade, and Lexi is in 2nd grade.

The Big One from 2 years ago

Wednesday, August 26, 2009

Bad Mom Day

I had one of those days where my head just seems to be elsewhere. That can be risky for a mother of three. Proof I was being a bad mom? Well you read my previous post about the less desirable music I let them listen too. Then there was the medicine. I had just had Gary Plaquinel refilled on Monday. The bottle consists of eight pills. HOW in God's name he got a hold of it, I have no idea. HOW the lid was off and WHY. Ugghhhh. Gary was quiet for awhile and I thought, how nice as I was cleaning his room upstairs. I moved a blanket and a pill fell out. My daughter said, here mom, here is a pill. ALARMS in my head went off. What would a pill be doing on the floor. Huh. Oh well back to cleaning. Gary was now with me at this point. A few moments later I head back downstairs to find the scene of the crime. There they were. Eight white pills spread out in a scattered fashion. Powder residue coated the leather. I immediately gasped and ran to find him. He looked fine. No changes in color, breathing, nothing. I asked, "Gary, did you get into medicine." He just looked at me. "Gary, did you eat any?". He said "No, icky." He had even taken the pill cutter which contains a razor blade had began chopping them all up. The reason for the white powder residue. My hand was on the phone ready to call Children's to see what my concerns would be. You know, what to look for. Before I did though I took a deep breath and pieced them back together. All eight pills were accounted for. He had not consumed any of them. Now celebrate that he is back ladies and gentleman. He is back to getting into any and everything. We even had to lock the front door today because he kept going outside naked. Quiet is not a good thing. I have to get use to that again. Another side note: Gary has had a few distressful episodes with swallowing today. I am not concerned yet. May have just been an off day or maybe he was just tired. The distress did not come the point of actual choking but mimic'd that sensation. Keeping an eye on him. His skin is still showing signs of activity. Redness that comes and goes. Extreme episodes of localized itching, then it goes away. But it seems to have subsided a bit. The whole cherry on top though was tonight when I went to give him his nighttime medicines, another medicine I just had refilled was all gone. The lid was not on tight so it leaked out in the bag. WAAAAHHHHH! How did that happen? Time to start being very careful.

I miss my husband. He is home from umpiring but is always really tired understandably.

My Posse

This evening on the way home from a shopping trip an old time favorite of mine came on the radio from when I was a teen. Reminder that most teenagers are stupid and make dumb choices. I was NOT exempt from this stupidity. Anyway the song was Sir Mix-a-Lot, My Posse's on Broadway. All the kids were in the car. Of course it propels me into a happy nostalgic mood, up goes the volume. The whole car consists of my ten year old son, seven year old daughter, eight year old nephew, and two year old son. The car becomes electric. Out of the corner of my eye, I see heads bopping back and forth. Limbs and bodies bouncy to the beat. I even seen my ten year old observing himself in the mirror as he does his moves to the music. The words are inappropriate at times but hard to follow so I didn't worry. All the sudden I became a little emotional. I thought back to when I was young, out with my friends or my older sister. How cool my "posse" was in the car. At one point even smoking, feeling cool, but hating every minute of the taste, but it was cool. Especially with Sir-mix-a-Lot on the radio. My emotions shifted to a happy satisfaction. So this is my new posse. My chubby two year old, perking his lips and slamming his hands together to the beat because that is what the posse was doing. It was as if the Holy Spirit filled me, reminding me, these children are your gifts from Me. Here is your posse. I know, sounds corny, but it was my misty moment. It's my heart.

Feeling a little convicted over the words not being the best, we followed it by a jam session with a song my friend Lynn sent me. The kids know it well from church and really enjoying it. I thought the car was electric with Sir mix a lot song. My entire body was alive. Every hair stood on end as the kids started to not just dance, but each child sang each word. I loved it. I love that they could sing with such love for the Lord. It was truly beautiful.

Of course I still am human and His child and return to my grumpy mood which I don't like to do. It is so easy to fall back into the feeling of everything being a hassle. Now I have to make dinner, which comes EVERY night. LOL Dinner is aggravating. Always gotta come up with something new. Truth be told, I am so happy I can and God provides.

Article

I found this article http//www.i-glassesstore.com/treatmenttherapy.html. This patient is actually in Seattle. So neat!

Tuesday, August 25, 2009

Time 2 Unwind

Gary's levels were good this week. The doctors liked them. We talked extensively about the "flares" he has been having. The doctor I talked to this week discussed how she does not want to go chasing a skin rash. I am still processing that one. Nor do I want to go chasing a rash with toxic chemo drugs. But it makes me doubt whether or not this disease is actually going to stay quiet once we ween him off the steroids and chemo. The doctor thinks the redness may be a side effect of the steroids. Another hmmmm. I don't know. I think it is the dermatomyositis, but I could be wrong. The reason I think it is the dermatomyositis is because it is acting like the rash that presented on April 19th when we started this journey. At the time, I was treating him with Children's Clariton and Benadryl. He would suddenly have a rash, didn't matter where we were at or what we were doing, BAM there was this rash. This past week he has done the same thing. He will suddenly look like he is sun burnt and then it goes away. Just like it did in the beinging. Tap, tap, tap. Hmmmmm. It then again could be from the steroids. But it would be the FIRST reaction to the steroids since he first started them in May (Besides the excessive weight gain, unusual hair growth, and mood swings). It also makes me wonder, why would have a reaction to the steroids when they are tapering him down to a lower dose. It is hard to decide whether to push for a wait and see, or push for the OH NO you don't. Don't back off on treatment now. This thing is not finished or is starting up again? It is difficult to do the "Wait and See" approach. It is just as difficult to insist they keep pumping poison into him. We continue to struggle with Gary's blood pressure. It was 146/87 in clinic. They brought in a manual blood pressure machine. It was better but still high for his age. While sleeping it dipped way low to 107/32. They were kicking around the idea of changing his BP meds. Once it went to low, the doctor decided to keep it as is. Back to his levels, sorry to jump around here. His levels popped up the week before last. That week the entire Juvenile Dermatomyositis clientele's also did. Lab error???? It seems funny though that the rash activity went right along with it. I am thinking that we will try to go every 2 weeks with the Cytoxan. That means we may have to go back to the weekly at home injections of Methotrexate. Whooooppeee. I have had that part easy. I will have to start practing again. Any volunteers?

AND YES, I know God is in control. I do not doubt that. God blessed me by making me Gary's mother. I don't take that job lightly.

The pinched nerve in my neck is great fun. I love advil. Gary and I had a long night last night. Up every 30 minutes for vital checks, and diaper changes. I finally fell asleep for 30 minutes straight and had a strange dream my IPod cracked in half while at the ocean. Then there was this Mexican guy who had an NG tube who kept flipping it at me. LOL.

Friday, August 21, 2009

Levels

Ok so yea his levels were back down again which means they will not pursue other medications as long as his levels don't change next week. I mentioned his new increased rash activity returning but they said they will check him over on Monday. It will be decided which direction to go from there. His energy is amazing. I love it. He has leveled out to being happier towards the end of the week. His personality is wonderful. He is doing this squeal of delight that brings my heart great pleasure. He started a new sound this week. The "th" sound. It comes out as just 't'. So we ask if he would like to take a bath. He will repeat, 'BAT' in agreement. Robert has been working quite a bit. It is endearing to hear him ask about Dad throughout the day. I am not looking forward to the kids returning to school. :( Gary enjoys his siblings very much during the day. I am a bit more at ease since my last post. It takes me a couple days to let things settle as far as my emotions. I get all unwrapped up just to get all wrapped back up again on Monday.

*Happy note: I just made contact with a friend I met in High School. I have been looking for her on and off for years. Gotta love Facebook! She is from South Africa and beautiful as ever!

Also in the right hand corner down below I have begun to keep track of Gary's levels.

Tuesday, August 18, 2009

Direction

We are back home from our weekly Cytoxin and Methotrexate treatments. Gary is doing. He is doing OK. We suddenly have a return of raging rash activity in his skin. It has me a bit worried with increasing levels. The doctors are talking about adding new drugs.
He has not been this raging red since May when we were first diagnosed. No we were not in the sun. This picture was after an hour after his IV was put in BUT this is not his normal. It is really tough seeing different doctors each week. It may be time to but our back up plan into action. DR. P Our main doc was not there this week so I had to deal with all the nonsense. Nonsense of starting a drug that I thought we should be on. There talking a completely different one then our doc talked about. "Maybe Cytoxin isn't his drug." Maybe I should lay on the ground and kick my feet and grit my teeth and scream right in the middle of the hospital. I know that will get me know where. Profanity. His levels were good I guess. The one that was up last week won't be back until later this week. I fought to get the tube out but I lost my debate. It ended with this. "Do you know how to administer the heimlich to a toddler? What if he was choking on a hot dog. " My reply, "I don't give him hot dogs. There high in sodium!". We had to increase his blood pressure medicine because that has been up since last week. Obviously we did not do any tapering this week of his home steroid. His knuckles and hands have begun to break out again in the Gottrons Papules . Would make no sense to taper off again. The activity in his skin especially on his face is evident. I assume they will be calling me this week to discuss. Or not since we go back in on Monday. My positive piece for this entry, we had our own room. No hallucinating patients this time. Nurses were great. I love loved our nurse when we got down to the our room. She was on top of everything this time. It must have been National Intern Med Student day or something. A whole lot of them were peaking through the room. I would have let them in but he was fast asleep. Next time.