You know how much I like hugs!!!!!!!!

Good morning all you journey takers!! I have a minute before I need to go to work so here is an update. The girls had mom all day yesterday and they did a great job. Katy and Thereasa gave mom a bath and shampooed her hair. Then they change the sheets and washed the bedding. Christy came by last night and help mom with a dressing that needed to be applied and helped with some other issues I won't discuss. She is able to move Patsy to the potty chair better then we are. It really helps mom to keep her clean.

The meds that carol has mom on may be working. Last night when I got home, I went in to give Patsy her hug and kisses and I positioned her arm so that she could give me a hug. HOLLY MAKE MY HEART SWELL!!!!!! She actually was able to give me a hug. I wished you knew how that makes me feel.

She still has a hard time eating. I am not sure why she won't open her mouth but sometimes she can really make us mad. She seems to do a bit better when I feed her and that really gets the girls going. She had a bed sore on her behind and we have decided that it may be caused by the type of diaper she is wearing. My sis got me in touch with a place that sends us diapers and excepts medicaid but the diapers are not the best and the cut is different then the Depends that we can buy. Last night I went and bought some Depends and today she looks much better.

Let me tell you where we are on money. The food stamps have been cut back because they are now counting that whopping 671.00 that Patsy gets for S.S.I. That will hurt a bit. Also, I am buying some protein supplement to help Patsy because she has not been eating as much. Ensures helps and that can be bought with food stamps but it uses all the food money so we are buying a different protein supplement. I have some money coming from work and if I am careful, that should buy us heat and things for the winter. I was in need of some gas money and was just about to call the family when I looked at the bank account today and a deposit was made. I am glad that you can't see the tears. I don't know who to thanks and I wished there was something that I can do to repay whoever has been helping. Please know that you help to make our lives better.

So, I have moved Patsy back to this side of the bed and changed her. She shared a banana with me and it is time that I make her some breakfast. Then I am going to move her to the living room and get her up for the day. She doesn't appear to have any pain, she smiles and says yes or no occasion. And she remains the love of my life. With your prayers and the kids helping me, the journey will continue. Thanks for riding along, RAZ

Holy Backache!!!!!

Well, i think it is past time for an update. But what do I say? Our girl is not doing so good. I have had to make some changes in the way we care of her. First of all, she was starting to develop some bed sores and we caught the early and made the needed changes to get them taking care of. Patsy doesn't move at all and that means we have to move her more to keep things from developing. The latest problem that we have is that she will not open her mouth to eat. She won't even let us help her. She just clenches harder. It makes it harder to keep weight on her. She also developed throat problems and was having a hard time swallowing.

So here is the new plan. No more meals laying down!!! No staying in bed all day!!!

Holly Backache!!!!

It is a little tough moving her to the front of the bus each morning and back to bed at night when she has to be lifted from the bed to the wheel chair and then lifted from the wheel chair the recliner. And of course, she has to be lifted from the recliner to the couch to be changed and then back to the recliner. And then it is back to the bedroom at night so that means back to the wheelchair and then to the bedroom and then lifted back to bed.

But we now feed her all her meals while she is sitting up and I think that is helping. It is also helping with possible bed sores.

She doesn't talk but she still knows what is going on. We get smiles and I still get kisses. She looks better now that we have her up more.

So we now have a new decision to make. The girls are not able to lift her. So now what do I do???

I have two ore weeks that I could work but I have a hard time leaving Patsy. I fill I should be here. The girls said they would try to keep up the routine the best they can. If Patsy makes it,, I could use the money this winter to keep us warm. If she doesn't hold on, I am sure I will have expenses that I will need some money for. So, the rain has stopped and I am sure that they will call me back tomorrow.

I was told that I should put Patsy in the nursing home. Patsy said NO!!! Well she didn't say it but she told us with her face and eyes. She is pain free and not suffering. She also is enjoying the granddaughter that is here. I think we will continue what we are doing and hope for some improvement. Keep her in your prayers and thanks for riding along. RAZ

Katy's Care

Well Dad wanted me to update the blog. Now I'm not one with the words so I have been thinking all day what I could say to let every one know how things are going. We have been keeping track of our days with Mom to make sure she is getting her meds and drinking enough water and every thing else. Well Pops had the idea to post every thing I wrote down today so every one can see just how we spend our days. It might sound a little weird because I was just jotting things down. So here it is word for word.

10/19 9:00 Am

Tried to feed wouldn't eat.

Put 3 Magnesiums and 1 B Complex in Oat meal

Gave 1 B-12 and all 4 Droppers

Little drink of water

9:30 Am

Took temp 101.3

10:00 Am

Temp 101.4

2 Ibuprofen

little drink of water

Tried to feed her again had a few bites of Oat meal/Throwing Oat meal away.

Put cold rag on head

Therease checked diaper little wet didn't change her.

She is sleeping

11:00 Am

Temp 99.6

11:45 Am

Temp 100.1

Ate a lot of tomato soup.

Drank some more water.

water about 1/2 gone

Sleeping again

12:30 Pm

Gave all 4 droppers.

Drank a hole ensure and some more water.

Therease changed her diaper was really wet.

Was laughing and smiling and said yes a few times.

2:30 Pm

Temp 97.9

Ate a lot letfover noodles.

Gave her Dropper #4 3rd time.

Had a hole Ensure and the rest of the water.

3:30 Pm

Christy Came.

Temp 99.5

Changed poopy diaper

Worked her legs.

Gave her 2 Ibuprofen

5:30 Pm

Gave all 4 Droppers she has had all her meds today.

Had a Dr. pepper with dinner.

Had stuffing for dinner.

Therease checked her diaper said she was good.

Has not been out of bed today.

Couldn't get a read on temp she keep bitting it.

8:00 Pm

Dad came home

feed her some more changed her rolled her on the other side of bed

Temp 99.0

As Dad would say keep riding along.

Katy

Is any body home in there?????

My sweetie doesn't fill well. Patsy has a head cold. And what makes matters worse, because of her blood pressure, she can not have most cold relief medicine. So I have some Icy Hot that would clean anybodies sinuses and I have been putting a little under her nose and that really helps. I have been up and down the last few nights trying to keep her fever down.

Today some friends dropped by and that was sure nice to see them. Patsy new who they were even though she didn't say much to them, they made her smile and you could tell that she was in the conversation with us. I made her some dinner tonight and after dinner I got a few words out of her. It is hard to understand how a simple word or two can really make my day, but it does. If patsy gets her brain to tell her body parts what to do, she is going to be back and i have faith that it is going to happen. Thanks for riding along!!!! RAZ

Nothing darn it!!!!!!

I had better take just a minute to tell you what has been happening. NOTHING!!!!!! Well, that may not be exactly correct. patsy has been doing about the same. We went through a couple of days where she wouldn't talk much. That has been a little rough for me because it helps to know how she is doing so that I best know how to take care of her. Even though she doesn't say much, she knows what is happening and she is still sharp as to what she wants to say but can't.

I guess I catch myself thinking that I wished she was better but then I realize that it isn't up to me and that I should be thankful for the times that we continue to share. People have often said that people that take care of special needs people are the most blessed of all. I believe that now.

So, I took Patsy to Carols again to day. We are making progress I believe. Patsy is talking more now, she was standing a little better today, she continues to eat, I think she has stabilized her weight. and she is still alive. The CJD disease symptoms are just not happening to her like they said. Last night I asked her if she wanted to sit in the living room and she said yes. WHAT????

I love it when she wants to get up and do things.

Patsy is a special person and I am not sure why she is being put through these tough days but I have a good idea that she is on her way back. Carol says that she is doing really good and that she is working on the brain and only the brain. Some day I will tell you what she thinks is the original cause of this mess but I want to wait a bit. It is something that she has just found in the last couple of weeks. Most of you will be really skeptic so I choose to wait. But things continue on and I will continue to keep you informed. See you along the road. RAZ

I quit!!!

I had better write something on here before the phone starts ringing. Yesterday was a very bad day. I would have quit if it was a job that I could leave. I tried to feed the little snot and she would not open her mouth. She wouldn't talk to me and she was just in a fog. I was surprised a little because she had a good night the night before. I took her to Carol and she would not use her legs to help me at all. We have it down to a science but it is still a chore to get her to the van.

Anyway, Carol could see that I was upset and asked what was wrong. Patsy wouldn't talk to her either. Carol did her testing and said that Patsy was the best that she had seen her for a long time. I started laughing because if that was her best, then I didn't want to see the bad.

Carol told me that we were working on the brain and to be a little patient. @#$%%^^&&&!!!!!

So I brought her home and threw her in bed. No, not really but I wanted to. I got her to bed and I asked her if she still loved me and she said no!!

But, I did cook her a nice dinner and she did eat it all. I gave her the final meds that Carol has her on and we watched tv until late in the night. Carol did call last night to make sure that I hadn't dropped her off somewhere on my way home.

So I woke today wondering which Patsy I was going to have to deal with today. HOLLY HAPPY DAYS!!!!!!

She is back to being patsy. Laughing, talking, and she says she loves me again. When I changed her today, there was a lot of granule like stuff in her diaper. Carol called to check on us and i told her about it and she says that she is just cleaning out and not to worry. I let Patsy say hi to carol on the phone and Carol had her laughing. Probably talking about me.

Anyway, that is my story and I'm sticking to it. Thanks for riding along, RAZ

Sing us a song Patsy!!

Well, it s 10:30 and I just got done with doing laundry. I fed Patsy a vanilla yogurt and she is watching a little tv before bed. I am almost ready to get there myself. Here is the good and the bad!

Carol says she is now feeding the brain and i believe it is working. She still has not had any pain pills for days now and things are looking better. The Bishop came by to see her today and they asked her if she wanted to be released from her choir calling and she said NO!!!! They decided to leave her in as Choir director. I am not sure why and I was not here when they came by but Thereasa says they had a good talk. Christy was with her today after 2:00 and she and Marty washed her hair. That is funny to me. To see my son Marty doing something like that is hilarious!!! I don't think he found a transmission or spark plug there. HeHe. Christy says Mom was singing along with a song on tv. Holy Singalong!!!! I wished I had been here for that.

Now for the bad. If we don't start doing therapy on her legs and arms, she won't be able to do anything if she does get her brain working again. So, that is what we are doing. I think I have been a little negligent because I guess I thought that if she wasn't going to get better then what was the use. But, I will do better and so will the girls.

Ok enough for now. keep her in your thoughts and prayers and continue to ride along with us on our journey. Raz

Popcorn and a football game!!!!

What a wonderful day. Patsy seems to be doing better and other then telling me that her legs were hurting, she had a good day. I can't remember the last time that she had to take a pain pill. She has taken a couple of aspirin from time to time. None today!! So I made her some dinner and then I got ready for the football game on tv. Just for fun, I asked her if she wanted to go watch the game in the living room with me.

Holy Kickoff. She said yes!!! What??? So I took a picture of her just to prove it to you. She has been up for three and a half hours now and is still doing fine. I just changed the sheets on the bed and came back in here to write on her blog. She is watching tv while I type.

I also shared a bag of popcorn and a soda with her during the game. The down side is that I had to carry her to the living room and put her in the chair. I will use the wheel chair to take her back to the bedroom.

Keep up the prayers and thoughts. But most of all, keep riding a long. I am now reading to her at night the comments from all of you. I think Katy changed the settings so now you can comment. Please do, Patsy will here them all. RAZ