Monday, December 28, 2009
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.
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
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
Monday, December 7, 2009
Sunday, December 6, 2009
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
Wednesday, December 2, 2009
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
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.
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.
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!
Thursday, November 12, 2009
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
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
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
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.
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
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 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 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
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
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
Wednesday, September 30, 2009
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.
Monday, September 28, 2009
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
Tuesday, September 22, 2009
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.
Monday, September 21, 2009
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
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
Wednesday, September 9, 2009
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
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
Friday, September 4, 2009
Thursday, September 3, 2009
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
Monday, August 31, 2009
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
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
I miss my husband. He is home from umpiring but is always really tired understandably.
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.
Tuesday, August 25, 2009
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.