My sis and her grandbaby, Elizabeth, she is a doll!

My sis and her grandbaby, Elizabeth, she is a doll!

My nephew Will, his wife Nicole and the newest family member, my great niece Elizabeth

My nephew Will, his wife Nicole and the newest family member, my great niece Elizabeth

Mom, me, Barb and Myles (my sis and bro)

Mom, me, Barb and Myles (my sis and bro)

Missie and Uncle Myles (my brother)

Missie and Uncle Myles (my brother)

Missie and grandparents

Missie and grandparents

Missie at park in Brockville,Ont. Canada

Missie at park in Brockville,Ont. Canada

Missie and I went to Canada in October

Missie and I went to Canada in October
Mom and Jim

Part of Preston's room, he has large room, calls it his apt.

Part of Preston's room, he has large room, calls it his apt.
has a recliner and little refrig.

Missie wanted her room lime green and black

Missie wanted her room lime green and black
turned out very nice!

Left side of kitchen

Left side of kitchen

Right side of kitchen (sunflowers)

Right side of kitchen (sunflowers)

Other half of living room

Other half of living room

Part of living room

Part of living room

Part of our dining room, it is a large room

Part of our dining room, it is a large room

Our new home!

Our new home!

Jr.s shop

Jr.s shop

2 car garage

2 car garage

This is the only way it would let me post :(

Here it is December, where has time gone. I just realized this a.m. I have not posted pics of our new home, where we moved to in May. I am really bad at blogging now :( Preston is doing great! He did have a cold, but other than that, he is doing well! We are so thankful for that.Missie loves Union Bible Academy. She has moved into the dorm so she won't have to drive 1 1/2 hrs/day and during winter it would have been hard. She loves living in dorm and having her friends there. She is in choir and absolutely loves that and travels when they travel. She is maintaining a B average, and that is great! It was a big switch to switch from ACE cirriculum to textbooks, but she has done very well. We love our home, and spending our first holidays in it! Will post some pics.

Preston and Missie before surgery

Preston and Missie before surgery

Preston before surgery

Preston before surgery

Preston after his surgery

Preston after his surgery

Thursday, February 28, 2008

Worn to a frazzle!

I am worn to a frazzle (we say this in Canada.) It has been a big day. Hannah Merck Talley came and got Missie and I and we hurried down to Dillard's to be there for a few minutes of the viewing, then followed the procession to the graveside service. Missie went with the family to eat and all, and Hannah and I went out for lunch. Then we visited a little before she had to leave. It was so GOOD to be with her again. We get along so well and have known each other for so many years. But with our schedules we don't get to be together much. We are going to try and be together more though, Lord willing.

Anyhow, it was sad. The baby looked like a baby doll. There were many tears shed, but overall Pam and Paul did well. I know they will face many hard days to come. The autopsy results are not all in yet. The baby has had problems since birth, and was born 7 weeks early. She had been on meds. and had just been weaned off, and there is a possibility her heart stopped or she had a seizure and is how she landed like she did. But Pam kept saying today, "It is my fault, I fell asleep." My heart goes out to her. I really worry about Peyton. He was very nervous and withdrawn today. He has called me "Mama Gwen" for years now. I love that little boy. I used to cut his hair. He has always loved me. He lost his young father to brain cancer, now his little sister whom he loved dearly. Please pray for him especially if you read this. He is 10.

I am exhausted; just waiting for Preston to get his meds and go to bed, so I can lay down, too. Jr. took him to dr. today and he left the meds. just the same; I have tweaked his meds. to where he is not so tired during the day. It is working and for the last 2 days he hasn't laid down once during the day! So the dr. said if it is working, to leave it like it is! So that we will do. Jr. also took Preston to some thrift stores, and out for lunch. Then when they got home; Jr. and I went to TR and got groceries and other stuff we needed. So it has been a full busy day. It was a nice time of him and I being together, while the kids were at home! Now that Preston is doing so well and Missie can watch over him, once in a while we get out like that.


Gonna go for now.

Wednesday, February 27, 2008

Tonight

Well, we all were able to attend church tonight and hear the God's Bible school choir. It was so refreshing to see those young people singing and raising their hands in the air, and testifying. I am so glad the devil doesn't have all of our young people, regardless of what some may think. Missie and Preston both enjoyed it a lot. Missie didn't want to go, because she was so sad over the baby's death. But she really enjoyed it and needed that.

In a.m. a friend is coming to get Missie and I and we are going to the viewing and graveside for the baby. The mom sent me pictures this evening of her in her casket; she looks like a little doll. But it doesn't really look like her. Continue to pray for the family, and for Missie.

I am headed to bed. Junior took a vacation day tomorrow so he could take Preston to the dr. and Missie and I could go to the viewing, etc.

Tuesday, February 26, 2008

Sad day

Today has been a sad day for us.

At about 11:15 my phone rang and a friend was hysterical and saying "My baby is dead" and I thought she was overreacting and told her to calm down and tell me what was going on. She said she needed her mother, which lives very close to us, and could we try and get her. Well, her mother was not home; she was at the dr.'s office. Anyhow, I just knew her 3 month old baby was dead, that is all. Missie has helped care for this baby quite a bit. She loved Isabelle and Isabelle loved Missie. Missie had been going to their house to help with her because they had just moved, etc. Missie cried and cried today. She is heartbroken. Pam, the mother, is very torn up, of course. The baby was 3 months old, and had been born premature. Then she got RSV and was in the hospital the last time that Preston was in there, in PICU. Missie and I had gone to see her up there. Anyhow, Pam was feeding Isabelle and fell to sleep. When she woke up the baby was face down in the recliner beside her. But the EMT and coroner didn't think it was suffocation as there was no blueness on her face. Pam keeps begging everyone to please tell her that she didn't kill her own baby. A seizure might be a possibility, too. They did an autopsy but the results haven't come back yet. Please pray for this family. Hannah, a friend of ours, is coming to get Missie and I and taking us to the graveside. There is just a viewing and graveside. I am going to post a picture of Missie and the baby. Anyhow, the viewing and graveside is Thurs. Preston has to go to the dr. on Thurs. so Jr. is taking a vacation day and take him so Missie and I can go to the graveside.

Tomorrow night we are planning to attend the GBS choir; Preston is very excited about that. He only usually gets out on Sun p.m. but very much wanted to hear the choir. So we look forward to that. All prayers would be much appreciated for the Krupa family. Pam has a 10 yr. old son, to a previous marriage, and he has already lost his young father to brain cancer; now his baby sister. So it is hard on everyone.

So that was our upsetting day.

Sunday, February 24, 2008

Sunday

Well, it is back to the grind tomorrow. Thank the Lord for a day of rest.
After lunch today Missie started to have severe stomach cramps. She took some meds. to see if that would help but by the time it was time to get dressed for church she was in tears. So Junior took Preston and went to church. Then my stomach started to bother me, so it may be a bug of some kind. I think part of Missie's problem is nerves. A lot has happened in her 13 years. Before Preston's shunt was working properly we had some bad times when we were in vehicles going places or coming home. Even though he doesn't do that now, she still gets nervous if she has to go somewhere with him. Church is the only place she goes in the same vehicle with him. I must admit I get nervous sometimes too about taking him places or going places with him. He still tends to get nervous if he has to go places, so that puts our nerves on edge. I know damage has been done to Missie's emotions; but I have tried to do well by both of my children; and God gave Preston to us, and we have done our best to care for him, and keep him in our home. I do not think he could survive anywhere else, literally. We are so happy he is doing so well, as far as his violent outbursts; they are sooo few and far between; only a couple since his illness, and one was when he had the infection in his incision. Missie used to be nervous all day every day and it broke my heart. That is MUCH better and I am so thankful for that.
You know, I told Junior tonight; some people have it so easy, yet they are not happy. Everything; even going to church, is a struggle for us. I don't understand why some have so many struggles and others have it much easier, yet they complain and are not happy. It is so sad. But as I have told Missie; happiness comes from within. No person or thing can make you happy. Only Jesus can do that; and deciding that in whatever circumstances God has places you, you will be happy. I had to do that, and I can say I am happy. Sometimes I wish we could do more things as a family; but it is all part of having a special needs child. We have learned to cope, and try to keep Missie's life as normal as possible. That is not easy. But we can only do our best.
Hope you all have a wonderful week.

Saturday, February 23, 2008

Saturday

Well, it is Saturday. Jr. got to stay in bed later. He overslept 2 times this past week. We just seem to be so tired. I know we are not getting any younger, but we aren't all that old, just worn out I guess. Jr. has to get up at 4:30 every a.m. as his job starts at 6 a.m. then with all that we have been through the last year, I guess we are just plain tired.
I had a usual busy Sat. Missie worked from 1-3 at the Humane Society. Preston decided last night that he wanted to take his own showers again. Well, he got ready to get into the tub, and got scared. So I helped him get in and get sitting on his chair. We need to get a tub rail to help him get in. Then I soaked him down and went out and he washed himself. Then I rinsed him and had to wash his hair for him. But he is trying so that is good. It has been a long time since he has been able to take his own showers. But we are working in that direction!
Not much other news from here. Hope you all have a wonderful Lord's day tomorrow.

Friday, February 22, 2008

Friday!

Thank the Lord it is Friday! I won't have to go anywhere tomorrow, but this is the last Saturday that I will have free. I start cleaning an office every Saturday afternoon starting after the first of the month. Missie volunteers at the Humane Society from 1-3 and I pick her up and she and I will go on over and clean that office. The little extra money will come in very handy, if I can keep it up physically. We will see how it goes. Missie is such a good worker so with her help I can probably do it!

I am going to start another blog and picture some of my cards. I love the color blue and I love snowmen, and I have been making some snowman cards to use next Christmas I guess. I have made other cards as well. I thought I would start a blog to picture them. In between making cards, I am also scrapbooking. I just finished one for my mom for mother's day and am getting ready to start one for my mother in law. It is kind of a recap of the year 2007.

Missie went skating today from 11:30-1. She loves ice skating and it is just $6 for 1 1/2 hrs. as she has her own skates. Several other homeschoolers were there today.

Jr. took Preston to the neurosurgeon today. They were able to take 2 staples out, but the rest are under a scab which he did not want to pull off today. When we wash his hair on Sat. some of it may come lose. I just pray Preston will stay well as our neurosurgeon is going out of town for a couple of weeks in March. The others in the practice don't know Preston as well, and don't always make the best decisions.

Well, I did manage to clean most of my house this week. I was glad for that. And I have about 24 auctions on ebay. Hope to make some $ from those. I messed up and got my dates missed up and have some ending on Sunday! I don't do that!!!! When I went back in there to change them to 7 days instead of 5, so they would go over until Tues., it wouldn't let me do that. Oh me! I hope the Lord understands my somewhat feeble mind.

You all have a wonderful weekend.

Wednesday, February 20, 2008

Wed. update

Well, Preston has not been feeling well all day. Very tired, and laid around most of the day. He did go out and sit in his swing for a few minutes, then came back in and laid down. This evening he watched a dvd, and went to bed about 9. He wants to on an outing tomorrow if it is not rainy and he feels better. So we will see what happens tomorrow. You never know what is going on with Preston, medically speaking. He has always been a hard one to figure out, and doesn't play by the rules, LOL.
When Jr. got home, Missie and I ran to library and grocery store. It helped me relax to get away for a while. I worry over him because of all of his problems. I guess I am a normal mother in that respect.
I did get to work on some cards this evening. I so enjoy making cards and I think I am going to start a blog and put pictures of my cards on there to share with people.
When I will get that done, remains to be seen.

Tuesday, February 19, 2008

Only my son!

Only my son would try to take the staples out of his head and then when they won't come out all of the way, push them back in! Can you imagine? I told him not to do that; it could cause more infection. Anyhow, Jr. is taking him back to dr. on Fri. to see if he will take them out. I hope he can have them taken out!

The aide came today; and we gave Preston a shower. I got soaked in the process and had to change my jumper. I can't wait until he can take his own showers again! Anyhow, we got that accomplished, and she cleaned his room, washed dishes, and vacuumed. So that was a big help.

It is almost midnight and I need to get to bed. Just wanted to check in.

Sunday, February 17, 2008

Sun p.m.

Well, we made it to church this a.m. but before it was all over, we wished we hadn't gone. By the church was over, it was POURING, I mean, POURING rain. Now Preston walks very slow with the cane. We knew that wouldn't work, so we went outside to get the wheelchair and the umbrella. Well, Jr. was soaked to the skin by the time we got back inside to get Preston. Then it let up a little and we went to the fellowship hall. But even then, Jr. got very wet because the way we have to get into the fellowship hall leaked in about 3 places. Anyhow, it was hard work, and then to get him into the house when we got home. We are hoping to some time get a roof for our porch! But we made it home and everyone is safely in out of the rain.

A nurse attends our church and sat beside me in the fellowship hall. She was concerned that Preston was only taking the oral antibiotics once a day. Because of his reaction and having to have the benadryl, he doesn't want to take it in the a.m. and be wiped out all day. But since he had the powerful antibiotics in the hospital for several days I am hoping he will be ok.

Our pastor preached on faith tonight. I need more faith. I just feel so exhausted in so many ways. I don't know if I will ever fully recover from the past 20 years of Preston's illnesses. It has been a long hard journey. Only God knows what we still have to face. But I need more faith to believe that He is still in control and will see us through it all.

Hope you all have had a wonderful Lord's Day.

Thursday, February 14, 2008

Happy Valentine's Day!

Guess what? On way home from bringing Preston home from dr. Jr. stopped and got me a dozen red roses!!!! He took me to an expensive place to eat last Fri. night and I thought that was our gift to each other. They are beautiful. Missie asked what he got her and he showed her a bag with bananas in it. Then he asked Missie to go to the van and get his and Preston's drink and bring them in, and when she got to the van there was a yellow rose awaiting her. She was soooo happy and excited. It is her 1st time to get a rose! Don't I have the sweetest hubby?

The dr. didn't take the staples out of Preston's head but said we could shampoo his hair and get some of the blood off of the incision. He has to go back in a couple of weeks and might get the staples out then. He is doing great. I have a fear that I have to fight about his getting back in the hospital. I have to ask God to please take the fear away. I just don't feel we can handle it any more for a while. I have to just put it God's hands and trust Him. Sometimes that is hard for me to do. I am supposed to make an appt. with the infectious disease dr. too, and he has to go to his psychiatrist next week. Oh me! It is hard for him to have a lot of appointments.

Preston sent his little girlfriend a card and a picture of himself and she got it today. She lives in Six Mile, a little ways from us, but not too far, and she called and thanked him and he said it made his day. It is cute to see them interested in each. She is much too young right now, for them to get serious, and when it is mentioned, he gets kind of scared. He is not sure he can handle marriage, and frankly we are not sure either! He said he wants to stay with me, but I told him I wouldn't always be here. He said Missie would take care of him then.
As this girl gets older, she may realize that she couldn't handle taking care of him. Time will tell.

Hope you all had a wonderful Valentine's Day!

Monday, February 11, 2008

Monday update, Feb. 11th

Well, believe it or not, Preston started to have a reaction to the antibiotics that he takes by mouth. I don't know what the deal is with antibiotics and Preston! My mom has a problem with antibiotics and will break out in hives, etc. Maybe Preston had inherited this from her. Anyhow, the 1st night he was back on oral antibiotics, he got real hot and his face and arms were very red. So I gave him benadryl and that helped. Now every p.m. he gets the antibiotic and the benadryl. I will be glad when he can quit taking them. But it is better to be safe than sorry.

We had planned on all of us making it to Sunday p.m. service, but it didn't happen. Preston was having some leakage from his incision, and carried a wash rag around all day with him on Sunday, and that wouldn't have been too attractive at the Sunday p.m. service. So he and I stayed home. He really missed going. But I knew his head would worry him.

Missie and I have been busy with homeschooling along with the many other tasks I have to complete each day. But in my "spare" moments, I am working on a scrapbook for my mom, for her birthday in June. Since she lives in Canada, cannot drive, and is getting elderly, she was not able to visit at all when Preston had his long hospitalization. So I am recapping 2007 for her in a scrapbook. And I may be able to hand deliver it!!! Mom is wanting Missie and I to make a trip up there in May. Last Aug. when Missie and I went, Mom was very sick. So she wants us to come back so we can do some things together, now that she is well again. I mentioned us all going, and driving up there, but Preston doesn't feel up to the trip. He and his daddy will do some stuff around here, and likely Missie and I will fly up. I don't know if I mentioned this or not, but I do NOT like to fly. But considering the distance (1,000 miles) and if hubby doesn't go, then flying is the only way to go. I get terrible headaches when I fly, so will have to remember to take some meds. before I leave on the 1st plane.

Preston returns to neurosurgeon on Thurs. We will see what he says about Preston's incision and if the staples can come out. He has dried blood on the incision, but I am afraid to do much right there as far as washing with much pressure, until we see what dr. says.

So my very eventful life goes on, day after day. I guess it is better than being bored.

Thursday, February 7, 2008

Thurs. update

Well, we ended up having 3 RN's here today! The first one came to bring the antibiotics and all the supplies for the midline IV (like a pic line but shorter). I hooked him up and got the 1st home dose into him without any problems. The 2nd nurse was from Greenville Home Health and she changed the dressing which had just been changed yesterday, and he had a rash and a lot of guck there. Well, a while later I noticed there was a lot of bright red blood under the dressing. So I called Sherry back and told her and she put a call into the infectous disease dr.'s office. She got permission for home health to pull the midline! Yippee!!!! I am sooo relieved. It was burning, itching, driving him and me crazy! He is now on antibiotics by mouth! Praise the Lord!!!! Preston has always had sensitive skin; so it was not working out. I am just glad the staph infection was not the untreatable kind and that he was able to get several days of powerful antibiotics (vancomycin & another one) through IV's. He has been so relaxed and happy today. There is no place like home.

I can't believe how exhausted we all feel, and this was a short hospital stay. But Junior thinks maybe we haven't fully recovered from the 9 week stay we had about 6 months ago. We are not getting any younger either.

Missie and I did some school today in between the nurses' visits. She and I watched the latest Janette Oke Love Comes Softly dvd together tonight. I just needed to relax. I am working on a set of "apple" notecards to try and sell. I got 2 out of set completed today.

Lord willing, Preston is wanting to attend church Sunday night. So we will see if he feels up to it.

Wednesday, February 6, 2008

Wed. update on Preston!

Thank you, each and every one for your messages and prayers.

Ok, here is a short update, because I am so tired, and need to head to bed.

We are home, and so thankful for that! They were unable to put in a full pic line due to the fact that after his birth he was put on ECMO, and the major blood vessels on his right side had to be cut. They cannot put it in the arm that has cerebral palsy. So he has a midline, and I have to give him antibiotics once a day for 3-4 weeks. They are coming in a.m. to make sure I know how to do that and brings the antibiotics. I will be very glad when that comes to an end. But it is better to be home and give antibiotics than have to stay in hospital!

Thanks for all the prayers and emails. If I didn't answer your email please forgive me. I have sooo many messages, it was hard to read them all.

Monday, February 4, 2008

Monday update on Preston

Preston came through the surgery great. There was more infection inside, and they cleaned all of that out and also took out a small bone. But he has to be on antibiotics for several weeks. So we signed for them to put in a pic line, and we will be bringing him home and giving him the antibiotics through his pic line. We will be having home health, and the company that supplies the medication coming in to be sure things are ok with the pic line and the antibiotics. But they are having problems putting in the pic line. They got it in so far and it won't go any further. So in a.m. they have to take him to radiology and use some dye and see what is going on with that. It will probably be Wed. before we get to come home. He had a big cry this evening, wanting to come home; but calmed down and understood why it might be Wed. It breaks my heart to see him going through all of this, when he was doing so well. So far it has not showed up staph infection. So that is a good thing! No infection is good, but the one he has (consists of a 3 part name which I have forgotten) is the treatable kind and the lesser of the 2 evils. The culture from today, will be back tomorrow, and hopefully it will be the same as the first culture.

We appreciated Pastor Going being with us, and also Junior's parents came down, for the surgery. It helps the time go so much faster when we have people with us. I have been in a lot of pain today and tonight. I was supposed to stay and let Junior come home and get a good night's rest, but I couldn't stay. I have got to extra medication and see if I can knock this terrible pain in my right shoulder, neck and down my arm. We are already exhausted and he has only been in there since Sat.

So that is the latest. Hopefully the pic line problem can be resolved tomorrow, and the wheels will be in motion for his homecoming!

Continued prayers are much appreciated.

Saturday, February 2, 2008

Hospital bound today - Saturday

Last night Preston started oozing a thick bloody mucus out of his head, and it is running down his head. I called Dr. Johnson (our own neurosurgeon is on call this weekend, yah!!) and he is admitting him. I am waiting to hear from the hospital as to where to take him. I know he will be on the TC unit this time; which is the unit for neuro patients. So that will be a new experience. They are starting him on antibiotic IV's and will take care of his head. So we are off to Greenville Memorial; at least we had 6 months rest. Will update when I can. Surgery is scheduled for Monday a.m. at 9:15. Continued prayers will be much appreciated.