Shame on me!

I can't believe it has been 10 days since I blogged. Shame on me.
Where do I begin? Well, I think Preston's peg was leaking, and we ended up going to surgeon's office and having the valve replaced, and until tonight it has been doing well. Tonight all the water I gave him, came out and soaked his gown. But when I gave his meds. it stayed in. Thank the Lord.

Jr. and Missie are gone to Gatlinburg. At 8:30 this evening I talked to Missie and they had just ridden the chair lift to the top of the mountain. She was so excited and having the time of her life, of course. So it is just Preston and I until tomorrow evening. Then Sat. a.m. she and I leave for Canada! Jr. will be on his own here with Preston, except for the medical help we have come in. He has stuff he needs to do around here; like replace some flooring in the kitchen and bathroom. Also there is more work to do in Preston's room. We haven't gotten it finished, but that is ok. We can finish it when I get back. We have to get a window before we can completely finish it anyhow.

My mom has been quite sick. I have been worried about her, and told her I would take over when I get there. I will cook and stuff, as we are having some family in. I am going to get to meet my step sister and her husband, step brother and his wife for the very first time. So we are excited about that. I just can't wait to see my mom; 3 years is too long to go without seeing your mom. But Lord willing, I will see her Sat.

Preston said he will miss me and asked me not to go. But I feel I need to make this trip. It will be good for me and Missie, and one never knows how long mom will be here, and she wants to see me so bad.

Gail and Eric Hobelman are taking us to the airport on Sat. a.m. We leave here at 7:30 a.m. our plane leaves Greenville about 10:30, we go to Philadelphia for an hour layover and from there to Syracuse where my brother will pick us up and take us in to Canada. It will be quite a long day, it will be about 12 hrs. altogether. But to drive is over 20, so we are still getting off easier.

I may not get to update until I get back. Will post some pictures hopefully, too.

Pray for us all please.

Time flies even if you aren't having fun!

Time goes so fast, it seems I can never keep up this blog.

Today Missie and I started painting on Preston's room. She is such a smart kid! I couldn't make it without her. She can do about anything! Anyhow, she did one wall all by herself. Tomorrow we will do touch up on the 2 walls we did today. Jr. has to fix another piece of the wall and put in a new window before we can do it all. The window is $100! Hoping to get it all done before Missie and I leave on our trip. I cannot believe it is so close. We leave Aug. 25 and come home on Aug. 31st. I get to see my mom, after 3 years!!!! I can hardly wait.

Anyhow, Preston ate a wonderful supper; his appetite is returning. It is the most he has eaten at once since he started to eat again. On Sat. he didn't want to eat, but Jr. told him no formula, and that he had to eat. So he got him started eating again, thank the Lord and he is eating now every day! We also got him in the shower and showered him and washed his hair. I bought a shower stool for $4 at the goodwill, and it is the best $4 I ever spent! It is wonderful.

Preston has gone back on his meds. for the "storms" which cause him to shake, so his walking should improve soon. Preston can stand up by himself now! He are real close though, as his balance is still off and he gets nervous about falling, but he is getting stronger. If the shaking gets back under control, it will help with his walking. Then we will work on potty training again and get him out of these diapers. I told him tonight that Daddy and I had given him back to God when he was so sick, but the Lord ended up giving him back to us. It is just a miracle what he has survived. God left him with us for a purpose. He is such a sweetheart. He told me today I was "beautiful" and that "he loved me" etc. He laughs so much more now than when his shunt wasn't functioning properly. He has such a good sense of humor and loves to tease us all. God has given us back our boy with a much sweeter disposition.

I am so tired, and we have 4 different people coming tomorrow to work with Preston, plus Missie and I want to paint in between, so I am going to bed shortly. I took extra meds. for my fibro. last night and I felt so much better when I woke up this a.m. but am aching again tonight. A good night's rest will help.

Wednesday

Well, I sent out an email to my mailing list yesterday saying that Preston was eating now. Well, he did eat for a few days, small portions, but today wouldn't eat hardly a bite. So I am having to feed him through his g-tube, but we will keep trying. Today NO ONE came, to work with him; I loved it. Missie and I got started on his room today. We tore down the old border and took everything off of the walls. We put all the stuffed animals he wants to keep in the dryer on fluff to get all of the dust out of them, and they are in garbage bags until we can put the pet net back up. Next week we hope to get a lot of the painting done! Border will go up last. We won't be doing the ceiling, it is very nice. We are doing the walls in blue like the ocean, to match his sealife border. I think it will be nice if we ever get it done. We were able to sort through most of his toys and talked him into getting rid of a few, and a lady came and got several garbage bags of stuff from my cleaning out! It is a lady that has 6 children and homeschools and she doesn't live too far from me, and I met her through freecycle. Now when I have stuff, I email her and give her the chance to take it. Her children were elated because there was a Barbie doll house of Missie, and Preston had had a pirate ship set and castle set, which he had given Missie, now she is too old for it, so they got it all. So we made a family happy today.

Tomorrow we are back to the busy day. At 9:30, Preston's personal aide II comes and bathes him, changes his bed, etc., until 11:30, but at 11 Sylvia the speech therapist comes, so they overlap by 30 minutes. OT and PT are both coming, not sure what time, and also a lady to do a mental evaluation on Preston from Pickens County Board of Disabilities and Special Needs. She comes at 2. I hope she and PT/OT do not arrive all at same time.

Can't wait for Hannah to be able to start working with us! I think she and her children are coming up Sat. I haven't see JJ since he was tiny, and he is 5 months old now! I can't wait to see him!

I had an order to do 3 metal bandaid tins with scripture tags inside, for Mildred, Preston's personal aide. I got them all done! Missie altered a tin tonight and really had fun! It is fun.

Got an order for 40 Christmas cards, so gotta get busy on those soon. I want to get all the housecleaning and Preston's room done before Missie and I fly out on Aug. 25th. We will be back on Aug. 31. We are going to fly into NY where my brother will pick us at and take us on over into Canada. I think this trip will be good for us both right now. Jr. is going to stay with Preston, so we can go, and he will have help coming in, of course.

Pray for my fibromyalgia. I am aching a lot, and my lower back is really bothering me. It has hurt the worse today than it has in a long time.

Over and out for this time.

Wed-Sat. update

How is it that I get so busy and forget to blog??? Well, I do!

Anyhow, it has been a busy week. To tell you the truth, I can hardly remember what happened on Wed. Claudia, the PT, and her boss, Doug, came together and they got Preston up and walked him to kitchen sink and along counter, and he was proud of himself. Jr. got home a little early because I needed to go to town so I left while Preston was getting PT. I was able to get a few things in town.

Thurs. we had a new lady come, she is called Personal Aide II, and her name is Mildred and she is a black lady, but has been doing this kind of work for over 30 years. She gave him a real good bed bath, changed his sheets, shaved him, etc. She was supposed to stay 2 hours, but the ambulance got here at 8:30 to pick us up for Preston's appt. So she was here 1 1/2 hrs. She will do light housekeeping, washing his clothes, etc. but it is hard for me to have someone do that. In a couple of weeks Hannah will be starting and I may discontinue Mildred. It is not because she is not good or I don't like her, just think it will be too many hours that people will be here. It is hard to have people here so much. I like my privacy. Anyhow, Preston had an ultrasound of his liver and more blood work done, but the jaundice is gone now. It must have been the meds. that we stopped. But he is having some tremors since we had to stop the medicine and that slows down his progress of walking, etc., so I have called dr. to see what we can do. I am waiting to hear back from them next week. The Gastro-enterologist is going to call me when he gets the results of the tests to save us a trip over there. Thank the Lord for that. Jr. came and got Missie and took her to work with him while we were gone. Since Preston's illness, she is not comfortable staying here alone. She used to love it, but now doesn't want to be alone. So Jr. takes her to work with him and she can sit in his office.

Friday, which was yesterday, speech therapist came, and 2 PTs again and got him up and walked him and he was so tickled that he did so well. They saw an improvement from Wed. to Fri.

Saturday, today, Jr. and I got him up and showered him and washed his hair, he gets smelly even with bed baths. But I won't attempt it without Jr. AND GUESS WHAT?
Missie gave him shrimp in tiny pieces and he ate about 10 whole shrimp altogether! And he drank some rootbeer. He was so happy to be able to eat that shrimp. He was able to chew and swallow it and did great. I don't think it will be long until he is eating again. He wants to so bad! He talks a lot about eating and when I am cooking he will say it smells good, etc. So we have some shrimp left and he will eat some more tomorrow. I have talked to him today about telling us when he needs to use the bathroom. I am hoping he will do that soon. I guess I like to rush him a little too much; he has to take his time and be ready to do each new thing. He has laughed a lot yesterday and today. I mean, really laughing. It is so good to hear him laugh.

Tonight we told him about the experience we faced when he was in the hospital and not doing well. Bro. Armstrong was there, from church, and Jr. and I had to have a meeting in a little room with the dr. We had to decide whether to give Preston stronger medication in order to stop the almost constant tremors he was having, but which could cause his breathing to go downhill, and we didn't want him on the respirator. Many tears were shed, and we were finally able to come out of that little room. When we got back to the room, Bro. Armstrong told us he had only had about 1 tremor in 20 minutes. He thought maybe they had given him medication, but they hadn't. It was God that touched him right then, and it was not His will that Preston be given stronger medications that possibly would have hastened his death. He said he didn't remember that afternoon. Some things he remembers; some he doesn't. But the other day when the RN was here from Community Long Term care, he told her that if his heart stopped and he stopped breathing, that he did not want CPR, to be brought back to life, and was able to put his initials on the paper. So I thought that was good. But we need a DNR form, Do Not Recessitate, and have that in place. Anyhow, enough of that morbid talk.

Things are improving, day by day. He is now able to wear and see his watch!!! His eyes have improved a lot. He watched dvds today and enjoyed it. So, we just take one day at a time, and enjoy every day that we have with him, because we know it could all end in a very short time, if God wills. He is so sweet, most of the time. He is not as aggressive as he was before his illness. I believe most of that is gone, with the tubing gotten out of his brain. He has his sense of humor back. He does get tired of being messed with and tells us to Stop, but I know it gets tiresome for him.

Well, tomorrow is Sunday and Jr. and I will take turns going to church and taking Missie. Preston misses church so bad. He can hardly wait to go back.

Tiring day

Well, I don't like afternoon appts. especially when the ambulance service is late getting us to our appt. and then this doctor's office that we went to today was not accomodating like the other places we have been, since we have to be transported by ambulance. AND the EMS personnel left us there, and this is the first time that has happened. The offices usually get us in and out quickly and the EMS people stay right there and bring us back home. Well, today that didn't happen.

Anyhow, the dr. says we may never know why Preston has had jaundice. It could be meds., of course, but he felt the medication we stopped was not the reason, but if it isn't, why does he seem to be getting better? He is not quite as yellow plus his stools are back to normal color. But since the meds. is getting out of his system, Preston has started shaking again. He had quite a long time of shaking today when we first got there. He was having what the neurologists called a "storm" so now we have to get him on another medication for that. Oh me! So in a.m. I will call neurosurgeon and see what they say. But I just remembered, he is not in his office tomorrow.

We are going to Greenville Memorial to have an ultrasound done on Thurs. a.m. and more blood work to see if the levels have come down any. We have to be there at 9:30. I dread it soooo bad. It is hard when you have to wait for someone to come and get you, and wait for someone to bring you back home, etc. But such is life right now.

So that is all I know right now.

Over and out for this time.

My trivia question for today is

How long can a person's liver not be functioning properly, before that person will get very sick???? Preston is still very jaundiced, I mean he is yellow! But he is not sick. If the bile is not leaving his body, why isn't he sick from it? I guess we will find out Tues. He goes to the gastro-interologist on Tues. afternoon. He is very excited to be riding again to the dr. and back in the ambulance. He enjoys that. I just hope he doesn't get sick from this, and that it will go away. We don't need any more hospital stays or a bunch of tests run, which is what he will have to have if this doesn't clear up. Things are doing well, why this????

Junior and I got him up today and got him in the shower, and he sat on his shower chair and we gave him a good shower and washed his hair. He said it felt good. We are going to have to do this at least 2 times/week. Soon I will have help and we can do it more often, during the day. By evening, he is very tired. He goes to sleep about 8 p.m. or shortly afterward. He still has a lot of healing to do, and maybe this malfunctioning liver problem is attributing to his tiredness. But he is talky and listens to his stories on cd or tape every day. The pastor came today and he really enjoyed that. He visited with him. It is sooo nice he can talk again.

Gotta get to bed.

Interesting tidbit!

Well, my sister will probably kill me, LOL but I have to tell you that today is her birthday. I know the day is almost over, but nonetheless it is her birthday until midnight. Well, what is interesting is that she and I are NOW THE SAME AGE, until my birthday. I think that is neat. Now I am not going to tell you how old we are. But on Aug. 11th I will then change my age, and we will no longer be the same age. But I enjoy it the 2 weeks that we are!

Preston is still very jaundice. I called the neurosurgeon today to see if they had made him an appt. yet with the proper doctor, but they didn't even call me back. I guess they had nothing to tell me, so didn't call me??? I just don't want him to get real sick and start throwing up etc., and we end up taking him to the ER. I want to avoid the ER if at all possible.

He was up sitting and rocking in his chair twice today. He had OT and PT. Tomorrow he has speech and the nurse comes. His blood pressure is doing fine now that he is off his meds. I am still hoping and praying that it was the meds. and eventually it will all be flushed out of his body and we can go on with life! Things are going well, except for the jaundice.

Junior got off after about 9 hrs. instead of 10 today and I was able to go to town. I ran by a thrift store and met up with one of my friends, and all books were 4/$1. I bought several to sell. I didn't get any put on tonight. I vowed to go to bed earlier and it is now 10:25 and I am still up. I worked on altering a black & white composition book for someone to use as a journal. I hope to finish it tomorrow, only have one little thing left to do.

So I am off to bed so I can get up earlier in a.m. We need to clean house tomorrow. It doesn't even get dusted every week now, since Preston has been sick. Oh well, the dust will be here when we are dead and gone.