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