Jesus Prom

    Last night, Friday, September 11, my church held a Jesus Prom.  This was the first time we did this.  The theme  was Candy Land.  The decorations were very cool.  Pool Noodles used for Licorice Forest.  We had Peppermint Forest.  Colored squares on the floor, to be like the trail on the game board.  The guests could get their shoes shined, nails done, play games, have supper, get treats, dance, and even go on a carriage ride pulled by a horse named Bingo.  Even, Webster the Duck from the Rubber Ducks was there.
   While I was watching people dance, I thought about what my night would be like if I was there with Timmy.  There was no visible speakers, and he would not have liked that.  No place for him to stand in front of the speakers.  The music was loud, though.  I even wondered how he would done with doing the Limbo.  He probably would've liked all of the people, going up to them, getting  hugs, and such.  My fun would've been keeping him from pulling down all of the different decorations.  i still think it would've been fun with him there. 

Missing Timmy

Been thinking a lot about Timmy lately.  Sometimes it is hard to believe that he is no longer around here on Earth.  I miss him a lot!  During the past week, while trying to fall sleep at night or trying to take a nap, I think about sitting next to Timmy and we both are worshiping God. 

I will also ask God, what is Timmy doing?  I talk to Timmy, too.  I wonder when I get to Heaven if I will be able to get a Timmy Hug.  I miss  his hugs. 

This was taken on Christmas 2010.  Even though he is in Heaven, he will always be a part of my heart.

Been thinking...

From what has been going on this month, I was thinking last night.  Back in December, mom and I had been talking about Obama Care  and how it could affect Timmy.  At some point, it would come that the hospital would say that we can not care for him.  They basically wouldn't be allowed to.  The main reason would be that he is handicapped.  So for him dying now is a blessing in disguise that we do not have to go through.

From what I read about Granulomar Disease, is eczema being active.  I have been having issues with mine since late summer.  I have been complaining about it, and have started thinking in the last few months, that maybe I had become allergic to tomato products.  It seems that my eczema would bother me when I ate pizza, spaghetti, chips and salsa, lasagna.  My eczema is the corners of my mouth.

I'm Related to a Stinker

I went to see my brother this morning. I took a bunch of library books with me so I would have a bunch of books to read. He was awake when I got there a little after 10 am. He wanted to wear my coat, nothing new, so I took it off and put it on him, and zipped it up. By the time I was done reading the third book, he was asleep. I woke him up, and he moved over to the mat to go back to sleep. I made him get up, so I could get my coat back. He is a real stinker!!!!!!!!! Going to sleep on me. I will see him again sometime next week.

Back in the Hospital

On Tuesday, St. Patrick's Day, I was told that my brother was taken from school to the ER. They noticed that one of his knees was red and starting to swell. Group home was called and was taken to the ER. He was admitted to the hospital. Doctors said this time the infection was caught early. Back in January, just before his birthday, he spent a few days in the hospital due to an infection in one of his knees. Mom thought he would went home today, but he didn't. I will see him sometime this weekend.

Mom, got a call this afternoon, saying that somebody from the hospital was going to call to get permission to put my brother's feeding tube back in. I do not remember the hospital calling in the past, to get permission to put it back in, when it came out. As, I said, his feeding tube came out last night. Around 5 pm or so, mom got the phone call, and she gave them permission. She asked how they fed him today without his feeding tube. Get this, they didn't feed him all day! He went over 18 hours without food. He probably signed food and drink all day, and they probably had no idea what he was saying, but then since he is in restraints that probably makes it too hard to sign. My mom is mad and is going to go and complain tomorrow. She even asked them about going all day without food. My brother does not talk, and as no way to express what he is feeling or thinking. He does not understand what is going on.

All of my brother's problems started back in November 2007, with the first infection that was in his finger. Since then, he probably has been hospitalized about 10 times. There has got to be something wrong besides getting infections too easy. Mom says doctors have been running tests and can't find anything wrong. Why else would he keep getting infections, if there isn't something else wrong with him? Only God knows.

Snow Day!

Today was a snow day! Even the Universities are closed today, that meant no class tonight. Today was either snow day 4 or 5 for the school districts around here. That means if there are anymore snow days, school districts will have to make them up. More systems are on their way. So gorgeous up here. The snow reminds me of what God does for us when we ask for forgiveness of our sings, He makes us white as snow. I got to try out my new boots this morning. I picked them up yesterday afternoon. There was so much snow, that if I tried to take the car out, I probably would've gotten my car stuck in the driveway, so I walked down to get the newspaper this morning. The snow in the driveway was about calf deep. The yard next to the driveway seemed about knee deep. I had to check it out. The snow on the deck, looks to be about waist deep. As usual, I took pics this morning. I took both the camera and my phone with me on my walk. I was going to walk back down later this afternoon, but our driveway got plowed, and my dad had to move his van so that area could get plowed, so he drove down for the mail. There will be school tomorrow and my other curriculum class as well.

My mom saw Timmy on Monday at the hospital. He was admitted last Saturday night. Mom talked with a nurse on Monday, and was basically told that Timmy has MRSA. That would explain why he keeps getting infections and have been in the hospital so much in the past 15 months. Timmy's birthday is this Friday, so I will go to the library, check out a few books then head over to the hospital to see him. No birthday presents until he gets out of the hospital. I so feel for him. I wonder if this is God's way of telling me I need to let him go, loosen my grasp on him. I love him very much, and my time with him is pure unconditional love.

CT Scan

Last night about 11 pm, I drank the first dose of the "yucky" stuff that is the contrast for the CT Scan with contrast that I had this morning. Because of the weather/roads, my mom dropped me off at the hospital about 9:15 or so. A good hour before I had to be there. My appointment was for 11 am. They misunderstood me when I asked for ice to numb the area around my port. They thought I was asking for something else. I was given a glove of ice to numb the area. Took two nurses to access my port. The first one had a hard time, because my port chose to move around. Once they start, it doesn't take long to take the x-rays. I was done by 11:40 am. I will get the results next Wednesday when I go see my onc.

My brother was supposed to be discharged from the nursing home this afternoon and go home to the group home where he lives. That means he gets to open his Christmas presents this weekend.

I am scheduled to see the dermatologist next Monday, and my family doc the following Monday.

Christmas Skunk

As you know we caught a couple os skunks in a trap this summer. For Christmas, my dad got the best and funniest present. From my sister and niece, he got a skunk webkinz (stuff animal) in a small cage. It was funny, when he opened it up. I did take a pic of him holding the cage, but what you see above is just a pic of the skunk in the cage, taken from three different angles.

Didn't have a white Christmas, that is two years in a row.

Heard from the hospital this morning, my brother's feeding tube was reinserted yesterday, and he is moving to the nursing home this morning. Hopefully, he should only be there a week. I didn't go see him yesterday, but I should have. If I don't see him today, I will definitely see him this weekend.

Another Timmy Update

On Sunday, my parents visited a nursing home to check it out. Sunday morning, he pulled out his feeding tube, and it had to be reinserited. My brother was supposed to be discharged on Monday. That didn't happen. They were waiting on a certain person to go to the hospital to see my brother, we have no idea if she showed up or not. Then they sad yesterday, and somebody didn't want him going to the nursing home in the afternoon/evening, so they post-poned it until this morning. Guess who decided to pull out his feeding tube again? That is right, Timmy did it again. There was nobody at the hospital to reinsert it, and so it will be out until Friday. He still has the mickey tube, and can be fed through that. As of now he might or might not go to the nursing home on Friday. Timmy keeps telling people, that he doesn't want his feeding tube anymore, but nobody is listening. I don't want him to have it anyway, but there is nothing I can do about it. Sorry kiddo, you will have that tube for the rest of your life. He is not able to take anything via mouth ever again, and he so badly wants to.'

'I saw my family doctor this morning, and I have excema around my mouth, I have had it for about two months. I was told to never use Neosporin, because it makes the rash or whatever it is worse.

Good News

The doctor called here not too long ago. Timmy didn't have surgery this afternoon, but he was put to sleep, so they could put a scope with a camera down his throat. The infection that is in his blood has not touched his heart. His heart and the valves are fine. That is wonderful news! Now it is up to the infectious disease doctor what they will do next.

Not Working

Timmy has been on antibiotics since last Friday, adn they are not working! He had surgery this afternoon, went in about 2 pm. They have been doing blood cultures, and have seen that the infection is growing, not going away. He had surgery to see if the infection is growing around his heart, to see if it is affecting his heart in any way. As of now, he is not transferring to a nursing home.

I am not, will never be ready to give him up. I know that when he dies, he will go to Heaven, but I am not ready to let him go. I will always need him. I call him my baby.I know he is nowhere near being a baby, but that is what I have called him for years. Please keep him in your prayers.

A Nursing Home We Will Go

My mom went yesterday afternoon to see my brother. She said that he looked good and acted fine, just like what I said on Sunday. Doctor thinks that maybe when he has gotten his previous infections, that when they kill it, it doesn't completely die. So it goes to "sleep" and it "wakes" back up at sometime. The doctor wants to prescribe a really strong antibiotic that they will give him every 12 hours for twenty-five days. A pic line is being inserted, to make it easier for the IV and being given the strong medicine. A social worker at the hospital is going to check into the same nursing home he was in last year for him to go to again. Depending on when he can go, will determine if he will be discharged from the hospital this Friday or next Monday. He will be in the nursing home over Christmas. :(

I've made comments to my mom that he has been in the hospital more since he recieved his feeding tube 6 1/2 years ago, than before that time. She said something about asking /making a comment about that to whoever if that could be a possibilty of him getting sick more easily. My brother has to have one on one care, because of him being active, able to get into things, pull out things from his body, etc.

Please pray that there is no problem of him getting into the nursing home, and that this antibiotic does the trick, adn he gets no more infections.

Back in the Hospital

NO, I am not in the hospital, but my brother is, again! This is his fourth or fifth stint in the hospital this year alone. Since re received his feeding tube, 6 1/2 years ago, he has gotten sick more easily than before that time. Before the feeding tube, he was rarely hospitalized since he was a baby (he spent time in the hospital for awhile then.) I do admit he was in the hospital a couple of times after moving to the group home, but nothing like this past year.

He has an infection. The doctors believe this infection started in a kidney, then moved into his bloodstream. The worse part is, this infection is immune to a lot of different antibiotics. A doctor who specializes in infectious diseases is being called in to see about prescribing a much stronger antibiotic, to kill this infection.

I went after church and lunch to go and see him. My brother sure didn't act sick. I was told that he was very sick. I went into his room, saw him and started complaining. Why would I complain? I saw his hands in restraints. I warned my parents in advance, that if I saw him in restraints I would have a hissy fit. Don't get me wrong, I understand why, but I do not like it one bit. My brother can not express himself and tell us what is wrong, but being in restraints is a scary thing. I should know, because I woke up in in ICU on a respirator and my hands in restraints, a little over 6 years ago. That is another story for another time.

When he saw me, he became agitated and started moving around, and trying to get out of the bed. He got his arms tangled up, and the IV to stop working, and causing one of his hands to become blue from not getting any blood to it. They had to undo the restraints, and allowed them to stay off while I was there. They did try to put them back on, but he started to have a fit. (Such a good boy.) I read to him, and it was very uncomfortable to hug him and sing to him, but I did do that. When I was getting ready to leave, one person mentioned how well my brother obeyed me, and not them. He doesn't always obey me. They put him back into restraints after I left. Please keep him in your prayers. I will never be ready to let him go to Heaven, but some day, it will be his time to go home to Jesus.

October Onc Visit

I saw my onc this morning. I gained 2 pounds in the past 16 days. My current weight is at 250.7 pounds. Daily, I'm up and down as to how good I am in watching what I eat. I've started eating yogurt again the past three weeks, so I know that will help. With working just about every day, not walking as much, but grad school starts in January, so walking on campus will help.

Labs were not done this morning. It has been three weeks since my port was flushed. My labs were low, but okay this past year. Labs will be done next month, and my onc says my levels should be normal by then. Labs drawn and port will be flushed the Friday before Thanksgiving. The same thing will be done again on December 30. Scans will be January 7. Will change my derm appointment to a different time that week or later in the month. Will next see my onc on January 16 (no school day). I should get my lab reports within a few minutes each time they are done.

Come January, will talk about follow-up and what will be done with my port.

My brother was discharged from the hospital today, and is back at the group home. I'm thinking of seeing him tomorrow. (I checked out a few books at the library to read to him.) My mom did tell someone from the group home that I was very upset to seeing him in restraints while he was in the hospital. Hopefully, that will be discussed and will not happen again.

Went over to AU and filled out the paper requesting to change my advisor. Hopefully, that will be okayed. I am still not sure which classes to take first in January. I need help in deciding that. I need to finish my app for grad assistantship and get my recommendations written, so I can turn them all in.

Going to a Halloween party tomorrow night. I will be going as a domino. Will wear black and safety pin colored circles onto my shirt and pants. The circles will be made from construction paper. Will post pics at a later date.

Still have problems with posting pics, printing pics, and, printing from my email account. Once all of that is fiured out, I will post pics on here.

Basketball and Brother

This afternoon was my niece's second basketball game. She played the third quarter. I had my mom's camera and I recorded the whole quarter, so mom and grandma could watch it this evening. Mom and grandma didn't go to the game. The team did better, and was a little more aggressive. They seemed to pass the ball a lot, and then would loose the ball, because they were making long passes, and the other team would get catch the ball. The point guard would drive the ball to the black line by the basketball and try to make difficult shots, that wouldn't go in. Nobody threw a foul shot today. Jump balls are no longer done. My niece did have to dribble/drive the ball to the basket, and the shot she made didn't go in. This week's score is what I expected for last week. Final score was 12-26. Her team lost again this week. There was minutes of time when nobody scored. I did see improvement in the girls.

I found out this evening, after supper, that my brother was taken to the emergency this morning. They got him up for school, he had a fever, and went back to sleep. They think he has pneumonia. Will see how long he will be in there. Depending on where I am working the next few days, will determine if I can co see him. Hopefully, I will see him before Friday. I will be downtown on Friday, so I can definitely see him then. I thought about seeing him yesterday, but when I called after church he was napping, and sounded like they didn't want me to wake him up. My dad said he went to the hospital because I didn't go see him yesterday.

Fireproof Colors

I had one of my favorite meals for supper on Friday. Lasagna, my mom made it to celebrate that I was done with Interferon. She made two pans, with the second one in the freezer.

On Saturdays, I do not come downstairs until 10 am or later. I listen to the radio from 8:30-9:30 am. Then I do devotions and watch tv. I listen to "Down Gilead Lane" and "Adventures in Odyssey". I love those two shows. I went downstairs around 10:30 or so on Saturday. The backdoor bell rang around 11 am or so. FedEx dropped off a box, which was from me. The box came from ProFlowers out in CA. It was a box of chocolates from my SS class in honor of me finishing my treatment. That was so sweet and thoughtful of them. The chocolate is good. There is a packet of coffee in the box, which my dad is drinking.

Saturday afternoon, both my parents and myself went to the movie theatre to see Fireproof. The movie stars Kirk Cameron, and it is very good movie. Kirk plays a captain in the fire department and has been married about 7 years or so. His marriage is on the rocks. They are always snapping at each other, there is anger and bitterness between them. His wife wants a divorce. Kirk's parents come to see him (they live 4 hours away), and he tells his parents about impending divorce. His father tells him to hold off and that he will send him a book for him to read. The book is called "The Love Dare". Kirk's character reads and follows the directions in the book. The Gospel message is given throughout the movie. There are a couple of nail biter, edge of your seat rescue scenes also in the movie. I will not give the ending away. God see this wonderful movie for yourself.

Yesterday, I spent sometime with my brother. I hadn't seen him in about 3 weeks. It is always good to spend time with him.

When I got home yesterday, I stopped in the driveway to take pics of the trees. I so enjoyed my view walking down the driveway this morning to get the newspaper. The leaves are these gorgeous colors of yellow, gold, red, orange all intermixed within the still green leaves. It is a beautiful picture that God has made for us to enjoy. When people come for my party on Saturday, they sure are going to enjoy the drive up the driveway. Once we have a working computer, I will post pics of this year's fall colors.

My Brother

Last fall, I posted about my brother staph infection he had in his finger. I wasn't sure if I was going to post about him from this week or not. I've thought about it and have decided to post.

I didn't go see Timmy last weekend, because I was still sore on the left side from my biopsy, and Timmy sits to my left, on the couch. Sunday night (Easter), mom received a phone call telling her that Timmy was in the hospital. He woke up Saturday, with sinus problems. Sunday, he was worse, face red and half of it swollen. They took him to Emergency and he was admitted. He has another staph infection, this time in his nose, and bacteria in his blood. They talked about doing surgery, but the doctors have now decided no surgery. That is good news. He is on a very strong antibiotic, that he gets twice a day. His doctor was supposed to prescribe a pain medicine for him.

Timmy fell out of bed last night and hit his head. He didn't need stitches, that is good.

I haven't seen him yet and won't until after he is sent home to the group home. My parents want to make sure I don't catch anything. My sinuses have been bothering me this week. I keep getting sinus headaches. Tylenol doesn't work, so I've started taking Sudafed.

Thank you for all of your prayers. I really do appreciate them.

My Brother's Birthday

Today is my brother's 31st birthday. Went over to see him after supper. When I was driving down the driveway, I saw 3 deer. When I got over to the grouphome, he had 4 helium balloons tied to his left wrist. He took the balloons off after putting on my coat. I sang in his ear, like I always do. Yes, I did wish him a Happy Birthday.

My parents got there about 15 minutes after I did. He opened his presents. I gave him a pair of white shorts and a Steelers shirt. My mom had to buy him a Browns shirt. Guess which shirt he put on first, the Steelers one. I told her, he would like my shirt better, and he does. Actually, he put like 4 shirts on, then put Dad's coat on. My brother likes putting on multiple shirts.

One of the workers there said, that Timmy gets up in the middle of the night, and opens his dresser. He takes out all of the clothes looking for something to wear. He puts on clean clothes in the middle of the night. My brother is weird, but very lovable.

When I left the group home, I looked up in the sky, and was it beautiful, full of stars. A gorgeous view.

More on Timmy

The phone rang around 7am this morning, to let my mom know that Timmy didn't have a good night. He is running a fever, and having a hard time breathing. He was put on oxygen. By the time, mom got to the hospital later this morning, Timmy had been moved to ICU, and they didn't tell mom. My baby brother is not doing well at all. Dad went by this afternoon, and Timmy had to be given something make him sleep, so they could take his blood pressure. He was kicking about and not co-operating.

I told the Lord, that if he was going to take my baby home, to please allow me to go and see him and tell him bye in person. I am not ready to give him up. I still need him in my life.

The doctors are not sure what caused Timmy to get a fever and have problems breathing. Please keep him in your prayers.

I took an anti-nausea pill this morning, and it made me sleepy, where I slept off and on from 9:30-3:30. I have one week left of the high dose. I am so looking forward to that. On Monday afternoon, going to the place where I got my stocking to see if they can look at it, and let me know if I put it on correctly or not, and how to keep it from falling down.

Day #14 and Timmy

Today was a good day for me. I did not need to take any anti-nausea medicine. I did take a pain pill this afternoon, because of my headache. I was awake all afternoon, even though I did take a nap late this afternoon. My mom thinks I caught a bug of some sort, that is why I slept all afternoon, and I had a fever Tuesday night. I also did take anti-nausea pills all of those days, too. I have a new one, and this one can make me drowsy.

We picked up my stocking yesterday afternoon. Didn't put it on, until this morning, because of there being less swelling in the morning. The stocking is hard to put on. There is a belt that goes around my waist. It doesn't feel too bad, except for on upper thigh. My thigh hurts, and the stocking doesn't help matters. The stocking doesn't want to stay up on my inner/upper thigh. I am constantly having to pull it back up. I do not have to wear the stocking at night, but for now I will, because of needing help to pull it on. The stocking helps with keeping the swelling down.

I have another update on my precious baby brother. (My mom hates it when I call him baby. he is the youngest of us three kids, so he is the baby.) Timmy has a non-contagious staph infection in his right index finger, and it went into his tendon, but not the bone. That is good news. That is why he has to have six weeks of IV antibiotic. He will receive the antibiotic every eight hours. For now, he is staying in the hospital. Next Wednesday, we have an appointment to go check out a nursing home, to see if we like that place, and to make sure they will have somebody one on one with him 24/7. They said that they are willing to do so. Mom is going to see if Tim can still go to the workshop during the day, since he gets the medicine every 8 hours. His hours at school (workshop) is from 10-4. He can't go back to the group home, because they do not have a nurse who can give Tim his IV. Once this treatment is finished, and the doctor gives his okay, then Timmy will go back to the group home that he lives in. Hopefully, I will be able to go see him in a couple of weeks.

Father, thank you for allowing me to write some good things tonight, not just bad things. Thank you for the good day I had. Thank you that Timmy's infection didn't go into his bone, but stopped at the tendon. Please wrap your arms of comfort around him, and let him know that you are there. You know how much I still need him in my life.