Sunday

Well, today is Sunday. This a.m. Missie was awakened by Preston calling because he was wet. So Jr. and I got up and changed him, and he also needed his meds and to be fed. So I mixed up his meds, and Jr. fed him and I went back to bed, as well as Missie. Missie has had a cold all week and hasn't felt well. I am just sooo tired. So I went back to slept and slept until after 11. Felt so good to know Jr. was in control and I didn't have to worry about a thing. The down side of that is that none of us got to church. But the Lord knows all about it. It seems I finally have hit rock bottom from all that has happened. Soon I will feel like myself again. I cannot stay down for very long. It just isn't my personality.

Missie was to go on a camping trip for Mon. and Tues with friends and that was canceled and I was truly relieved. I felt like I needed her to help me here. I felt bad she didn't get to go, though, since she really wanted to.

Preston has jaundice and I did some research on internet and found out which medication is causing it, so have put a call through to the dr. on call. It is his high pressure medication that is causing it. It said to call immediately so I did that, and waiting to hear back. The pharmacy is open this afternoon and I was hoping they would call something else in. I don't want to take chances with his blood pressure.

So my life goes on. My abnormal life, but I should be used to that now. I just wish I was about 20 years younger. I could handle it better for sure.

Saturday

I am glad it is Saturday. Jr. worked from 6-12 then has been home with us and that has been so nice. We just had a quiet afternoon. We got Preston up and I cut his hair and he was happy about that. He sat up for quite a while. His eyes have been just a sparkling today!

I have been feeling so tired, and then a headache, and not resting too well. I think maybe part of it is depression. I know I missed my meds. today, and have to be sure to take them tomorrow. I am very happy to be home, don't get me wrong, and very happy Preston is doing as well as he is, but I guess it all is catching up with me. I never talk to anyone or see anyone except the medical help that comes in, except maybe my mom, brother, my mother inlaw, on the phone. I guess I am kind of lonesome. We have no family, and not really any close friends. We just haven't had much opportunity to have friends with all that has happened in our lives since Preston has been born. I am so glad we have each other. Many times we say that is all we have, and God, too. I am not trying to put a guilt trip on anyone, but we have not had one visitor outside of medical people since Preston has been home in 3 weeks (will be on Monday.) I know people are busy and have their own lives. But I think it would help him a lot too to have company. I told Jr. I think that is why he is so happy to even have the nurse come by and take his blood pressure. Ok, so I am being a baby, but I guess I deserve to be after the past 12 weeks. I guess I am a little sad too because my mom got married today and I couldn't be there. She called me after her and Jim left the reception to go on their honeymoon. But Lord willing, Missie and I are going to fly up before winter for a few days to visit.

I hope tomorrow I will feel better. I will, if I take my meds. I try not to forget, or I start feeling down. Also, if I don't rest well, I don't feel well either. When Jr. got up this a.m. Preston was soaked. So he changed him, and then when I got up he was soaked again, and I had to strip the whole bed. It was a good hour before I got to eat breakfast, having to strip, bathe, give meds. and feed Preston. On Monday an organization called Community Long Term Care is coming and they will be helping with sending an aide etc. Missie and I will get to go places while she is here, if I can keep the car those days. They will also build us a ramp and help buy diapers.

Soon headed to bed.

Thurs. update

Well, today has been another busy day.

Ambulance from Med-Shore came this a.m. and got Preston and I for his dr.'s appt. The dr. told Preston he looked so much better than the last time he saw him, and Preston was talking to him and Dr. Johnson said that he could see he was getting his sense of humor back and he was glad to see that! We got all of the prescriptions figured out, there were 7 of them! We don't go back for 2 months. The speech therapist wanted Preston to have a barium swallow test done and a vision evaluation but the dr. and I agreed we feel it is too soon. The nurse said his vision will be the last thing to recover. I feel he will eat when he is ready. He is not taking all of his feedings these days; he just feels too full. Could be the heat, too. Because even with our central air running constantly, it gets up to 76 and 77 in here.

We were only home a short time when 2 therapists came driving in. OT and PT came together and got Preston up and walked him and had him sitting, and then put him in the computer chair and Preston can roll around the kitchen floor that way. He was tired, though, and just wanted to go back to bed. So he rested after they left, then I put a book on cd on for him and listened to that. Finally he asked me what time it was. I told him it about 4 and he ASKED TO GET UP!!!! He knows his daddy gets off at 4:30 and wanted to be up when he got home. Missie and I got him up, and did ok today with that! Missie and I were both so thrilled that he asked to get up.

I said "Wonderful wonderful" about something he said, and he started to sing, "Wonderful, wonderful, Jesus is to me, and we sang the chorus together. I asked him what his favorite song was and he said "Amazing Grace" and "I'm Not Sorry (that is a chorus we used to sing when we went to another church) and I told him his 1st service back to church I would ask Bro. Troy if we could sing "Amazing Grace." He will be so happy to get back to church.

So today has been a good day all in all.

The day we took a tumble!

Well, it has been quite a day! Actually it has been a busy week. I get tired of people coming and going sometimes but I know I need the help and so does Preston. Anyhow, Monday was a quiet day. Tues. we had the home health nurse, OT, PT, so it was a full day. Today was speech, Equipped for life came and got the hoyer lift as I never used it and it was in the way. Then Carolina Homecare brought a bedside commode. AND Preston, myself and his swivel rocker took a tumble today. Whew! It scared me to death. I got Preston up alone, as I have done before, and he had walked over to the chair but he tends to sit down too soon and he did this and over went the chair, him and I and I could see his head headed for the bar counter top and I just knew it would split his head wide open. Well, apparently he didn't hit it that hard because his head was not bleeding nor was there a bump on the back of his head. I hit the wooden toy box with my arm and leg and there we were on the floor. Preston was kind of flabbergasted. Missie was outside on the trampoline which is several feet from the house, and I screamed while still on the floor, for her. She heard me and came in and helped me get him up and into the chair. If she wouldn't have been here, I probably would have had to call 911. So I have promised Missie not to get him up without her being close to help me. After it was over he thought it quite amusing and exciting and had to tell his daddy all about our "adventure" as he called it, when Junior got home from work. I am just thankful he wasn't hurt.


We are having problems with Preston's feedings. He is filling up and I am not getting to feed him every 4 hrs. and his stomach hurts. Not sure what is up with this. I am glad we are going to the dr. in a.m. Med Shore Ambulance Service will come and transport us to the neurosurgeon. He really enjoys riding in the back of that ambulance! I have to ride up front, but he is fine with that. The worse part is getting him to the ambulance, because we don't have a ramp.


BUT today I got a call from Community Long Term Care and they are coming Monday to do the interview. They first told me it would be 4-6 months. She told me today from what she has heard it won't be hard for him to qualify. They will build us a ramp and also help buy diapers. Thank the Lord for that. Have you priced adult diapers lately? $13 something for 16 diapers at Walmart. Thankfully, Junior's aunt and uncle in Greer went to Sam's and bought us 2 big cases of them, but he goes through them quite quickly! He is not ready to use the urinal or bedside commode yet. Also, community long term will also send an aide to help bathe him etc., and help with housework, and she will stay with Preston if Missie and I want to go somewhere. So that will be nice to have. It means more people in and out, and I might not want her every day, but once in a while will be nice.


Tomorrow afternoon, the OT and PT are both supposed to come together, OT being a man, PT being a woman, and get Preston up in the kitchen and try to get him to walk using the countertop. So tomorrow will be a busy day.


So that is the latest. If you find your life dull and boring, hop on over to 110 Woodworkers Lane and you will be glad to go back to your dull and boring life quite quickly I presume.

Monday

Well, I got my days mixed up and thought speech was coming today so I got most everything done by 11 and she didn't come. Maybe it is tomorrow? It is hard for me to keep up with them all. PT is supposed to come tomorrow afternoon. Thurs. a.m. I have scheduled a ride with Med Shore Ambulance Service to transport Preston to the neurosurgeon. I will ride also. I think Dr. Johnson will be quite pleased with how he is doing. He tried to eat a little this evening, but couldn't. I guess his brain is just not ready yet. He wants too, though, he asked what we were having for supper. I grilled squash and eggplant and he thought that sounded so good.

Preston certainly hasn't had any trouble urinating today! He has run us wild trying to keep him changed. I told him tomorrow we will try the urinal. I told him I will quit putting a diaper on him, so he will tell me when he has to go. I am having to potty train him all over again, and I am so tired! But I love him to death and will do my best for him, while encouraging him to do his best too. When he was a baby he wanted to be changed immediately when he wet and he is still the same way.

I had to go to the hospital to get meds. for Preston. They owed me some and I had to go there and get it, this evening, and stopped by the grocery store. It got me out of the house for a little while. But usually by evening, I am too tired to go anywhere.

Going to get to bed early tonight. I have one more feeding to give Preston and get my shower.

Saturday!

Well, it has been a busy day.

Junior went this a.m. and got a part for our mower and got all of the mowing done, thank the Lord. I HATE long grass and weeds. We have a lot of weedeating to do after the mowing gets done. He got a lot of it done, but not quite all, and made 2 trips to the dump with garbage.

I left at 12:30 to meet Aunt Beulah at Miracle Mart on Wade Hampton and we looked around there and she gave me the 2 huge boxes of adult diapers they had bought for us. Then she took me out for lunch to a new buffet on Wade Hampton, it was very good! She also sent home corn on the cob, eggplant, squash, cucumbers, and some fruit. Then I stopped at another thrift store and ran into an old friend from Taylors who is moving to AZ at the end of the month, so I was very glad we got to see each other. Then I came home and unloaded everything and left again to pick up Missie. So I got Missie and went back into Greenville. I went into the hospital to the pharmacy to get some meds. they owed me and of course it was closed. Then we went to the library to meet another of Missie's friend so she could come home and spend the night and go to church with us in a.m. We went in and got some dvds and stories on cd and tape for Preston. Now I am home, thank goodness.

Preston wants to go to church. It won't be long until we can take him in his wheelchair, I don't think. I got Preston up twice today by myself because he stood straight up on his legs for me and took steps! He is getting stronger every day. He keeps talking about food, so I don't think it will be long until he is eating again. We will know when he is ready!

So it has been a productive and busy day.

Missie

I wanted to update you on Missie's life.

She had a sleepover with 2 friends earlier in the week, and is with another friend tonight and most of tomorrow. Then tomorrow night she is having a friend here and she will go to church with Missie on Sun a.m. Her name is Melissa too, and she goes by Missa.

Missie is our social butterfly. But she is also a huge help to me. She has decided she wants to be a nurse when she grows up. She knows how to tube feed Preston and does it sometimes when I have other things to do. She is a blessing.

She and Preston are so close right now. Seeing him suffer like she did, and almost losing him, has made him more special to her.

Life is so fragile, handle with care.