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!

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.

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!

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.

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!

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.

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!

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.

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

In Memory

Justin Brubaker

11/06/97 - 10/04/09

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.

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!

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. :)

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!

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.

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.

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! :)