Wednesday, February 23, 2005 2:28 PM CST

Hello all,


Well it’s been a while since I updated the web page. It has been a little crazy around here. What’s new right???
First off Kimmie has been very sick. She came down with the flu the first of the month. Yes, she had the flu shot this year. She woke up the day that Madison and I were to go skiing with a high fever. I took her to see Dr. Bhan and he gave her an antibiotic just in case it was something just starting. At this point we didn’t think it was the flu (why would we she had the shot). She didn’t eat or drink much all that weekend. She only had three wet diapers all weekend. We went back to the dr. on Monday cause she was not better, but worse. She needed fluids. Dr. Bhan sent us to the ER for tests and IV’s. They took a sample from her nose and it came back she had the flu. I was not very happy when the ER dr. made the commit that we didn’t give her the shot this year. I told her she has had the shot along with the rest of the family. They gave her fluids after about 4-5 sticks to get a line in. We thought they were going to keep her over night but they booted us. I was happy to go home anyway. Last week Kimmie started with a bad cough and still was not feeling well. So back to the Dr. we went. This time she had bronchitis/pneumonia. She was given a different med. and sent home to drink as much as we could get into her. She has been sleeping a lot and not wanting to eat much. She has played very little. She starts to feel better than hits the wall and just falls over with no energy. The same day I took her in for the bronchitis she had a seizure than just laid there for a while. I went to lift her shirt to rub her back and saw that her stomach was all- sunken in and you could see all her ribs. She was breathing very softly. I watched her do this for about 10 minutes. I have to say that most things about Kimmie don’t bother me anymore but this scared the hell out of me. I almost called the squad. I did call the dr. he felt that she might have taken a breath in and was having a hard time letting it out. She came out of it and it only happen one other time after that. We went back to the dr. today for a follow up. She is still sleeping a lot for her. She will be setting and watching TV than just crash. I wanted to make sure that nothing had changed or that she didn’t have anything else. Dr. Bhan said it’s what we had talked about before. She is just going to take a lot longer to get over something than the rest of would. He felt like she could be like this for two months. We talked about her and school. As for now no school. She can’t start back till in the spring. I hate the fact that she got a little taste of school and now she is back home. I guess I have time to decide if we will send her back or not. I would hate for her to get sick again. Yes, I know I can’t protect her from everything but I sure can try. Call me selfish but I want her here with us. I don’t want to think that I shortened her life cause I could have kept her home away from people that are sick. Well that’s it for Kimmie… at least what my brain can remember.
I guess it’s time to tell you about Madison. First of all the ski trip. She got to go without me. I think she liked it that way. L She had a great time. She didn’t ski but went snowboarding. She said she fell on the edge of her board. She said she had a bruise on her butt that was in a line. Had to laugh at her over that. She wants to go back so maybe one day we will get to go.
She went to the dentist yesterday and she had 4 teeth pulled. She had just gone in to get them cleaned but found out she needed the pulled before she gets braces. She was so funny afterwards trying to drink. Her mouth was numb all over. She had 2 pulled from one side and two from the other. I did feel bad for her the first tooth she felt being pulled. The dentist said she has strong teeth that it took a few more pulls to get the teeth out. Other than that she is doing ok.
I have been busy painting Kimmie’s bedroom. It is very colorful. It is a barney room. Guess what colors it is??? I have to say my knees can’t take going up and down the ladder very well. They hurt so badly; I could hardly walk last night. Guess I am getting old. I have a lot of bruises all over my legs, top of my foot, and even a few on my arms that I have know idea how they how they got there. I look like someone has been beating on me. Other than not being able to sleep at night I am ok. I have been having dreams about Kimmie in heaven. I see her laughing and playing and free of all she has here. Maybe I have lost it who knows but it a kind of strange peace to know that one day she will be able to run, talk, and be totally free.
Tony is doing well. He was sick a few weeks ago but is better now. As always he is very busy with work. He may have to go away again for a few days to fix something on one of the subs.
I have to do a little vent now sorry. I know my last update was not all happy and not what most people wanted to read. I did feel that it was right to give people a look into the real life of what happened to Kimmie and how we felt. I am sorry if some could not see that fact. I do have to say if you don’t like what I post than don’t come back. I plan on putting the good and the bad on here. If nothing else this site helps keep me from losing my mind. I love Kimmie more than anyone could ever being to understand and it tears my heart apart to see her have to fight for everything she does in life. I do know that there are so many people out there that love and care for Kimmie that have never met her and that gives me a sense of peace. God gave us this life for a reason and for now I don’t know what that is but I know that he will get us through what ever is handed to us.
Ok before you want to ship me off to the hospital for some help I had better go. I am ok just some days are harder than others. I really have no room to complain as much as Kimmie and all the other kids that are sick go through on a daily bases. Don’t forget o drop Kimmie a little note in her guestbook,

Take care and God bless you all,
Mary

Thursday, February 3, 2005 6:42 PM CST

Hello all,

I hope this finds everyone well and happy.

I wanted to update today with how things have been going and also a look back at why we are at this point in life with Kimmie.
Let me take you back to Fed.04, 95. Kimmie was just 15 months old. It was an icy morning outside. Tony and I are at the Ronald McDonald House getting ready to go back to Children’s Hospital to see Kimmie. She was just a week post-op from having heart surgery. I walked back into the room and Tony was dressed and said hurry up Kimmie was going back into surgery. We got there as fast as we could go in the ice. We rushed into ICU and were told that Kimmie had coded 3 times. The nurse that had Kimmie over night was giving a report to her day nurse. She told us that they looked up and said Kimmie’s lips looked a little blue. The other nurse said “Oh Shit” as the monitors sounded. They had to open her chest and message her heart. The reason for all this was they had pulled a line out of her chest and she bled into her chest. It was a very long and hard day. They had to leave her chest open so her heart and lungs could work. Over the rest of that day her heart rate dropped and than would come back up. The dr.’s told me while I was in the ICU with her that night that she may not make it through the night. I just remember begging him to do anything to save my baby. My thoughts went to how would I ever tell Madison her little sister whom she loved was gone. I also remember begging them to please send her to a different hospital that might be able to help her more. They just looked at me and said she would never make it down stair if they tried to move her. My life was changed forever at that time; little did I know how much. I asked the Dr. to please go out to the waiting room to help me tell Tony. This was in the middle of the night and he was trying to get a little rest. I could not sleep. The dr. told him that they didn’t feel she would make it through the night. We went back into the ICU and sang to Kimmie. Yes, it was Barney songs. While we were singing the doctors talked with a few others and they thought they had only one chance to save Kimmie. They told us about a machine that might help save her. It was ECMO. It would let her lungs and heart rest while it did all the work. They had to call in a special dr. to put her on the machine as they go into the main artery. This took a while to happen, as the roads were bad outside. Kimmie’s BP dropped over the next few hours. They gave her some meds. to try and save her life. Tony and I just held her little hands and sang to her. I told her to hold on that the DR. would get there soon. The dr.’s told us to keep singing to her. When we sang her BP would go up a little. I guess you could say Barney had a way of saving her life too. The Dr.’s made it in and they could only move her to a room on the same floor to put her on the machine. She was just to bad to be taken down to the OR. The nurse asked which songs to song to her so she could keep singing. Tony and I were put into a room to ourselves. We cried and prayed that she would make. I walked the halls and went over to the Cardiac side of the floor and talked to one of the nurses there that had taken care of Kimmie a few weeks earlier. She gave me a hug and found a couple of pillows. I went back to find Tony and we just lied in the dark and waited for what felt like hours. The Dr.’s came in and said she was stable. We went into to see her. We had to scrub like the dr.’s do before surgery to be able to get into the room to see her. She was on medicine so she could not move. She looked so bad. Her little lips were a blue/gray. She was so little in that big bed. She had so many tubes and lines going into her. Her heart rate came up and she seemed to be ok for a while. Our families were due to come in to the hospital for a visit on the Feb. 5. Tony and I left to go back to the Ronald McDonald House to freshen up and try to rest a little bit. We had not called the family to tell them what had happened. We felt if something happened we wanted it to be just the two of us with her. While, we were away the family came and had to wait to see Kimmie. The nurses didn’t tell them what had happened so they were in the waiting room when we got back. We were only gone maybe hour and a half. We told them to wait a minute we needed to check on Kimmie. When we came back I told them I had something to tell them and it was not good news. I told them what happened and they could see her if they liked too, but only two people were allowed in at a time. Fourteen days later we found out she had a stoke and was having seizures. The first Neurologist that we ever saw said she would never know us, would not be able to eat by mouth, and would not be able to move on her own, he said she would be a vegetable. He told us that when it was time for her to go home he would help us put her into where she could live. I looked at him and said “go to hell, I am taking my baby home with me.”
Well enough of the flash back. Don’t want to many tears on the keyboard.

Now for what’s happening now. Kimmie is doing ok back at school. No real problems there. She has missed a few days for not feeling well. She continues to have seizures daily. Some days that’s all she does. She did have the ultrasound on the spot on her back. It is a cyst (fatty). The plan for now is to just leave it alone. She also has one on top of her foot. She just likes to keep adding things to her list.
I have to tell you what Kimmie did today. I went down to check and see what she was up too. She had her toys all over the floor and, her back to me. I noticed this black/blue spot on the floor. I asked her what she had been up too. I went around and looked at her and saw what she had done. The aide had left a pen on the end table and Kimmie had found it. She was covered in ink. Allover her face, hands and clothes. I took pictures and will post them as soon as I get them onto the computer. I was shocked that it all came off. I found the broken pen behind the TV. That’s where Kimmie puts things when she is done with them.
Madison and I are going on a ski trip (day) on Saturday. I hope we come back they way we left.
I wanted to thank everyone for all their love and support over the years for our family. There are never enough words to say how much you mean to us all. The past 10 years with Kimmie have been long and hard. We will fight for her as long as she fights. She has been the joy of my life but also caused a lot of heartache.
Thank you Sharon for being the best friend I could have ever asked for. Dr. Bhan thanks for all your support and for loving Kimmie. You are tops in our book.
Well I had better go and hang out with the kids for a while.

With lots of love,
Mary, Tony, Madison, Kimmie

P.S. I wanted to let you know that I do tell Kimmie about all the messages in her guestbook. Please leave her a little note.

Tuesday, January 18, 2005 2:38 PM CST

Good Afternoon all,

Well I guess it’s time to do a little blog. If you don’t know what that is Kimmie says just ask.
So where to start this time. The good or the bad and yes even a little ugly.
I think this time I will start with the GOOD news. It’s about 2:00 p.m. here and I bet you can’t guess where Kimmie is today. No she is not at the dr. or the hospital, or even in bed. We need a little drum roll please. Kimmie is back at school. Yes she went back on the coldest day of the year. I had to go in for a little while and make sure all the paper work was updated and the new teacher was trained in how to use the magnet for her seizures. Kimmie was not happy to be woken up today. She did get a little happier to get her coat on and be put into her wheelchair. When she saw the bus she said “oh, yah”!!!! She seemed happy to be at school while I was there. After I left the school it was off to get some papers signed by few of her doctors. You know how schools are they have to have everything in writing. I am a little scared of her going back to school, but Dr. Bhan said she could go. I know it’s good for her to be in school but this past year and her health makes me a little on edge about it all. I see how many of the kids in her class come to school sick and she really should not get sick right now (will go more into that later). We started her back at full time; crossing our fingers she can handle it. So that is our really good news.
I need to go back in time and tell you a few things that have happened since Christmas. Kimmie had a good Christmas. She did get sick the week before but it didn’t last to long. She loved all her gifts and cards she received. We went on a short family vacation over News Years Eve. We went to the beach. We had never all been on a family vacation before this. Kimmie was not so sure about being there. She stayed up until 3:30A.M. the first night. She didn’t understand why we were there. I took her out on the deck a few times and showed her the ocean. She would lower her eyes and turn her head. She didn’t want anything to do with the water. Our last day there she fell over and hit her head on the bed frame. Her head stated to bled. We didn’t stay long after that as she was not in the best of moods and we felt she would be happier at home with her own TV and her stuff. Other than that it was a great trip. Madison and I went for a walk down the beach. Tony and I even got to take a walk without the kids. We were staying at Tony’s bosses beach house with a few others from where he works.
Ok, I think that has caught us up to the bad part now. I guess it’s bad news to most but with Kimmie is more like just what now. I took her back to see her “boyfriend” Dr. Bhan. Yes I do believe that Kimmie loves him as she gets all happy when you tell her we are going to see him. He is very sweet to her, she just looks at him and grins. Well he said that him and Kimmie’s Neurologist had another talk about Kimmie and they feel she now has something called Metabolic Encephaloathy. I think I spelled that right. What is that you ask, well I will give it my best shot at trying to explaining it. It means that her body can’t tell it’s self how to heal it’s self. If she gets sick it will take her longer to get better and she can lose more skills as well. She really should not have any more surgeries as she may not recover from them. I had to ask the dr. a few times to make sure it was really ok for Kimmie to go back to school because of all this. Kimmie is still having seizures and has had another med. added to be used for when she has a lot of them in a day. We have had to use it more that past week. Other than that Kimmie has been doing ok. She has started to sleep more often again not really sure what is up with that.
I guess I had better jump to Madison now. She has been having some chest pain and she says her heart has been racing. She went to see the dr.’s and they put her on a heart monitor. The night she had it she got sick and we ended up in the ER for the better part of the next day. She said her stomach and side were hurting worse than she had ever felt before. She needed a bag and a half of fluids. We have not heard back from what the monitor showed. I am sure she is fine and more than likely it is just stress. She says she has not been under any stress this past year. I guess she must have been living on a different planet. She is doing well other wise.
Tony and I are doing well. He is bust at work, which is a good thing. I have been busy doing the mom stuff. You know making sure Kimmie gets to see her man before she has to many withdraws from not seeing him for a week or more at a time. I am just happy that she likes going to see him and it’s not a screaming fest like it used to be.
I wanted to ask you to say a pray for two friends of your please. One is for a little boy named Cody, he will be having surgery on Thursday to remove tumors in his lungs. His dad says that he seems to be great spirits. Please pray that the surgery goes well and he can heal fast to start back on chemo again. Also please say a prayer for our neighbor Jim. He is only 33 years old and had a stoke the other week. He is now home and will have a long recovery to get back to where he was before. Him and his wife are in the process of an adoption. They will make great parents, just praying this will not stop them from being able to adopt.
Well I have to go for now. Madison just got home and is trying to freeze my back with her ice-cold hands.


Love and Hugs to all,
Mary

Monday, December 20, 2004 11:49 AM CST

Merry Christmas!!!

Hello all,

Can you believe this year is almost over? I can’t say that I would want to relive this year. Yes there has been some happy times this year but more stress and fear than I care to ever have again.
Kimmie has been doing ok the last few weeks. She did get to go see her “boyfriend” Dr. Bhan again. He wants her to have an ultrasound of the spot on her back. I am still trying to find a place to have that done. She seems like she is doing ok one day and than the next will have bad day. She is still having seizures.
I was just so happy on her birthday that we had another birthday with her. It seems like we will have another Christmas as well. I know most people don’t get how I can say that without crying. I have to say that people just don’t understand how I feel about Kimmie. I love her more then life it’s self. She is (one) of the lights of my life. I just have a hard time seeing my child suffer as she has this past year. I guess I know that when her time comes to be in Heaven that she will be the perfect child I always dreamed of. I know she does not have to be perfect here but who wouldn’t say they want their child well. I wish I could let you see into my heart and see what I feel. I have set and cried over Kimmie so many times. I know she has served God’s needs well. She has fought more than any child I know. I am so PROUD to be her mom. I love her little smile that will just make you give in to her. If you know Kimmie you have to agree it will get you every time, just ask the aide. Kimmie has been and still is a blessing to us. We enjoy watching her have her little temper tantrums. You just have to watch that you don’t get fit with a flying toy. I got a kiss as a real kiss from her the other day. I asked for one and she leaned over and gave me one. I have not had one from her in years. I just want to say one thing to everyone: If you have children never turned down a kiss or a hug there are some many families that have children that can’t give kisses and hugs and would do just about anything to have just one. If you have healthy children you need to stop and thanks God for them. You cannot begin to know what it’s like to live day to day with a sick child. God gave us a special gift when he gave us Kimmie but he gave you a special gift as well. There is one other thing I can’t stand to hear right now and that is peoples jokes about being old on their birthday’s and talking about needing a grave. I know it’s just me and I need to see the funny things in life too but I have been looking into things like that for Kimmie and I just don’t see it as funny. We don’t know and may never know how long we have left with Kimmie but there is one thing I do want to make sure of is that when the time comes she will be remembered with all the LOVE and happiness that she gave to our lives. I also have been told by some friends that have lost a child to plan ahead if you know something might happen to your child that the grief is more then you can bear. I guess I feel I could not give Kimmie the life she so rightfully deserved here that I want everyone to know how special she is to our family. OK I had better make this a little happier. Kimmie, the aide and myself made a trip to Harrisonburg to see my grandma the other week. I took Amanda to different places while we were there. She got to see the baby chicken over 1000 of them and had a calf suck on her finger. Amanda is from CA and needed a little country in her. Kimmie was really good on the way there and back. She was tired the next day. My grandma was so happy to see Kimmie and thinks the aide is the just great. Way to fool her Amanda. J This past Friday my mom brought my grandma up for a visit. We went out to lunch and they just hung out for a while. The church came by that evening to sing Christmas carols to Kimmie. She would smile a few times when she knew the song. Yes, they made it special and sang Barney songs to her and even did the whole Hokie Pokie. Thanks to everyone that remembered her and her love for music.
I wanted to ask you all a question. What are you thankful for this holiday? I am thankful for my husband and my two wonderful daughters. I have been blessed with having them in my life. I know I might not tell them enough. I am also thankful for the rest of our families and friends. Your love and strength has truly made our journey with Kimmie a little easier. If only thank you could say how we feel about you all. You may not think you have done much but just that one meal, or visit, and maybe it was just that one prayer that got us through.
I want to wish you all the Happiest of holidays and hope that the New Year will be better for everyone.

With love,
Mary

Monday, November 29, 2004 11:04 AM CST

Good morning all,

First things first:


HAPPY 11 BIRTHADY KIMBERLEY!!!!!!!

I am so happy to be able to say that to her. I am just happy she was able to have another birthday. She has had such a hard year.
I am so proud to be her mom, there are not enough words to even begin to say how much I LOVE my girls. They may not all ways think I love them, but than I wouldn’t be a mom.
Well a lot has happened this month. Kimmie started to eat a little more. She still has days of not wanting to eat anything.
I was able to get away for a weekend without the kids. My mom and sister were behind this. We had a nice time. I have to say I don’t think I was that good to be around. My mind was at home with Kimmie. I know Tony is a great dad and Kimmie was in the best of hands. I just could not really have a good time, thinking that something may happen if I was not there. We were over 8 hours away from my house. Sorry mom and Jane, I did like the brake but I guess my heart was just into the trip. Kimmie was fine while I was gone. They were all in bed by the time I got home. When I went in to get her out of bed in the morning she didn’t want anything to do with me. I guess I hurt her feelings. She has made up with me now.
I guess I need to tell you the not so good news. I have known before Thanksgiving, but didn’t want to bring down the holidays. I had to take Kimmie to the dr. last week (Tuesday). Her wound on her hip had puffed up and than it popped again like a pimple. I needed then to check it. The dr. said that the wound looked ok by than. He did say that all the little spots around the wound were from an allergic reaction to the tape. He said that she now might be only able to use paper tape if we are lucky. I than asked him about the lump on her back. He has seen it before and had said it was muscle. He thought it was from the way she sets. I told him that it seemed to be getting bigger. He looked at it and said it was not the muscle. He said it was a tumor. I felt like I was about ready to hit the floor. He said he wants to see her again before Christmas to check it again. I thought things couldn’t get any worse with her. I had to find the right words to tell Tony. I feel like all I do is tell him bad news. Just once I want to say everything is good. The tumor is on her lower back close to where her kidney would be (I think that’s where your kidneys are). It has been there for a long time. Well over a year but I was not too worried about it when they had said it was just muscle. You can really see it when you lift her legs to change her diaper. You can now feel it when she sets up by just rubbing your hand down her lower back. It is about the size of a golf ball.
I just wish someone could tell me how much more Kimmie is to go through. She has had her fair share for more than two people. I look at her and wonder how she can still have a smile on her face. I guess she doesn’t know all that is really going on around her, for that I am thankful.
Well enough of the bad news. I need to tell you good that has happened too. We had Kimmie a bowling birthday party. We had it the day after Thanksgiving. She was all smiles for the first game she played. She did get a little board. We than took a break and eat. You have to have fries when you bowl. That’s what Kimmie thinks. She loved her fries. We than bowled the last game and that didn’t go over so well with her. She was tired of pushing that ball off the ramp by than. We than had cake and ice cream. Kimmie acted all shy when we sang to her. It was too cute. She opened her gifts from everyone. She loved them all. I want to thank everyone that came to her party. It meant a lot to Tony and I that you shared this birthday with Kimmie and us. It always touches me to see how many people love Kimmie. She is a blessed little girl to have so much love. Our church did a card shower for her as well. I want to thank everyone that sent her well wishes. Kimmie also got a special gift in the mail from Sue Hammons. She sent her a birthday box. Kimmie was all smiles when I pulled out the bag of cheese curls. Kimmie could live off of them.
Kimmie has feel in love with her aide. Amanda is young and very sweet to Kimmie and well as Madison. She spoils Kimmie to the point that Kimmie will cry when she is left alone. Kimmie has always preferred to be left alone, well not anymore. She wants someone with her in the room all the time. It’s nice that she likes people around her again but it can be a pain when you have things to do and the aide is not here.
Madison is doing ok. She needs to work a little harder in school. She is really changing. She is not my little girl anymore. She likes more young adult things now. Mom is not fun to go tot the mall with anymore. She was so happy when her and Amanda went out the other night. Thanks Amanda for hanging out with her.
Well I had better go get the house ready for the holidays. I hope that that will put me into a better mood.
PLEASE pray that Kimmie will get past this new hurdle in her life.

Love to all,
Mary

Monday, November 29, 2004 11:04 AM CST

Good morning all,

First things first:


HAPPY 11 BIRTHADY KIMBERLEY!!!!!!!

I am so happy to be able to say that to her. I am just happy she was able to have another birthday. She has had such a hard year.
I am so proud to be her mom, there are not enough words to even begin to say how much I LOVE my girls. They may not all ways think I love them, but than I wouldn’t be a mom.
Well a lot has happened this month. Kimmie started to eat a little more. She still has days of not wanting to eat anything.
I was able to get away for a weekend without the kids. My mom and sister were behind this. We had a nice time. I have to say I don’t think I was that good to be around. My mind was at home with Kimmie. I know Tony is a great dad and Kimmie was in the best of hands. I just could not really have a good time, thinking that something may happen if I was not there. We were over 8 hours away from my house. Sorry mom and Jane, I did like the brake but I guess my heart was just into the trip. Kimmie was fine while I was gone. They were all in bed by the time I got home. When I went in to get her out of bed in the morning she didn’t want anything to do with me. I guess I hurt her feelings. She has made up with me now.
I guess I need to tell you the not so good news. I have known before Thanksgiving, but didn’t want to bring down the holidays. I had to take Kimmie to the dr. last week (Tuesday). Her wound on her hip had puffed up and than it popped again like a pimple. I needed then to check it. The dr. said that the wound looked ok by than. He did say that all the little spots around the wound were from an allergic reaction to the tape. He said that she now might be only able to use paper tape if we are lucky. I than asked him about the lump on her back. He has seen it before and had said it was muscle. He thought it was from the way she sets. I told him that it seemed to be getting bigger. He looked at it and said it was not the muscle. He said it was a tumor. I felt like I was about ready to hit the floor. He said he wants to see her again before Christmas to check it again. I thought things couldn’t get any worse with her. I had to find the right words to tell Tony. I feel like all I do is tell him bad news. Just once I want to say everything is good. The tumor is on her lower back close to where her kidney would be (I think that’s where your kidneys are). It has been there for a long time. Well over a year but I was not too worried about it when they had said it was just muscle. You can really see it when you lift her legs to change her diaper. You can now feel it when she sets up by just rubbing your hand down her lower back. It is about the size of a golf ball.
I just wish someone could tell me how much more Kimmie is to go through. She has had her fair share for more than two people. I look at her and wonder how she can still have a smile on her face. I guess she doesn’t know all that is really going on around her, for that I am thankful.
Well enough of the bad news. I need to tell you good that has happened too. We had Kimmie a bowling birthday party. We had it the day after Thanksgiving. She was all smiles for the first game she played. She did get a little board. We than took a break and eat. You have to have fries when you bowl. That’s what Kimmie thinks. She loved her fries. We than bowled the last game and that didn’t go over so well with her. She was tired of pushing that ball off the ramp by than. We than had cake and ice cream. Kimmie acted all shy when we sang to her. It was too cute. She opened her gifts from everyone. She loved them all. I want to thank everyone that came to her party. It meant a lot to Tony and I that you shared this birthday with Kimmie and us. It always touches me to see how many people love Kimmie. She is a blessed little girl to have so much love. Our church did a card shower for her as well. I want to thank everyone that sent her well wishes. Kimmie also got a special gift in the mail from Sue Hammons. She sent her a birthday box. Kimmie was all smiles when I pulled out the bag of cheese curls. Kimmie could live off of them.
Kimmie has feel in love with her aide. Amanda is young and very sweet to Kimmie and well as Madison. She spoils Kimmie to the point that Kimmie will cry when she is left alone. Kimmie has always preferred to be left alone, well not anymore. She wants someone with her in the room all the time. It’s nice that she likes people around her again but it can be a pain when you have things to do and the aide is not here.
Madison is doing ok. She needs to work a little harder in school. She is really changing. She is not my little girl anymore. She likes more young adult things now. Mom is not fun to go tot the mall with anymore. She was so happy when her and Amanda went out the other night. Thanks Amanda for hanging out with her.
Well I had better go get the house ready for the holidays. I hope that that will put me into a better mood.
PLEASE pray that Kimmie will get past this new hurdle in her life.

Love to all,
Mary

Friday, November 5, 2004 9:27 AM CST

Hi all,

I guess it’s time for another update on Kimmie. It has been and up and down since my last update. Kimmie has had a few days of eating like her old self but more often than not she still wont eat. We just don’t get how she cannot eat when she used to love it so much. She is losing weight; she is down to about 42 lbs. She still likes to drink so that is a good thing. She came close to going into the hospital for lack of fluids. Her lips were all dry and cracked. We were able to get her to drink enough to stay out this time. She has been sleeping a lot more than she used too. She had a dr. appt. yesterday and I had to wake her up to go, make her take her meds and off we went. She went back to sleep in the dr. office off and on and when we got home slept on the couch the rest of the day. Tony woke her s she could eat dinner and have her medicine. She ate well last night. She wanted to help daddy clean his plate.
Well back to the dr. appt. I took her to see the Neurologist for a check up. We talked about what all has been going on with Kimmie and she said she has no idea what to do for her anymore. She did lower one of her seizure medicines because of her losing the weight. She said she thinks all the surgeries were just too much for her body to get over. Remember Kimmie has had 5 surgeries since March of this year. With all of Kimmie’s seizures and the amount of brain that Kimmie has left her body just can’t handle it all. She said the only thing she could tell us to do was to take her home and enjoy her while we can. I have to say that between the Neurologist and her regular Dr. I feel like my heart has just been torn apart. This is one of the worst feelings knowing you can’t do anything to help your child get better. You just have to set back and watch them slip out of your life. I know that the worst possible feeling is yet to come. I keep telling myself I can handle this, guess we will have to wait and see. I know Tony, Madison, Kimmie and I are blessed to have so many people that care for us. We are all dealing with this in our own way. I can’t and wont say how they feel, as I don’t know what is inside their hearts. I can say that love Kimmie as much as I do and I am sure they are wishing they would wake up from this “hell” as well.
I feel as if we as a family have done all we can for Kimmie. Some people say we have gone above and beyond. I am not really sure what that means when you are talking about the life of your child.
Oh, I forgot to tell you Kimmie has a new aide. We had to switch home health providers; Kimmie was moved to a better wavier for her needs. She has a very young aide this time. She is only 20-21. Kimmie seems to like her, until she reads books to her. This is the fist aide that we have had that is from the United States. Don’t get me wrong we have had a few great aides (Ruby, Trudy). I miss them both. They were great with her.
I had told you in the last update the Dr. Bhan wanted Kimmie to go on hospice. Well our insurance sent us a letter saying they will only cover 38 days (yes I said days). It is a onetime shot. The dr. was as shocked as much as I was. We are holding off a little to get them involved until it looks like she needs more than what we can do for her.
It’s hard to believe that Kimmie will be 11 on the 29th of November. At one time we didn’t think she would live this long. I just pray we can have one more birthday, Christmas. I am sure you know what I mean. I have not really thought about a party for Kimmie this year. I guess I have had too much on my mind.
I am going to switch kids again. Madison is doing ok. We had a lock in at the church last weekend. All the kids were great. I can say I was very sleepy during church. I was awake all night on Sat. and Kimmie had me awake the night before off and on.

We all went bowling the other night. Kimmie seemed to like it. She had some fries with hot sauce. We used the bumpers and she used the ramp. She remembered how her teachers taught her to play. You put a finger in the hole of the ball than take it out and do this flip of the wrist thing to push it off the ramp. (Oh there is no need to watch the ball) Mommy and daddy cheering is all you need to know if you did a good job. Kimmie was the only one that never hit the bumpers once. She did great she got a 129. Tony said he was working on his curve ball. He now plays on a league with the guys from work.


As you can see I added a few more things to Kimmie’s page. People are asking about what all has happened to Kimmie. I guess I took it that most people knew. Sorry about that. I also added her bank account info. Some people were asking how they could help. I am not really sure at this time what we need.

Well I had better go get some things done around this house. I have been letting it go way to long. I just don’t care about anything right now.
Thanks for all the prayers and support. You guys are great.

With much love and thanks,
Mary

Tuesday, September 28, 2004 10:53 AM CDT

Hello all,

I have been trying to send out this update for over 2 weeks, but just could not seem to be able to write it. I feel as if I have been living in a dream and I will just wake up and all this will have been one bad nightmare. I wish I could write anything else but this update.
Kimmie has not been eating well since she came home from the hospital. I took her to the dr. thinking it may a sore throat. Well it wasn’t her throat or her ears. The dr. and I talked about how her seizures are changing. When she has them now she stops breathing. We had a long talk about how Kimmie seems to be changing as well; she used to talk (say words) but wont say them anymore. She eats very little anymore. She will drink Boost. The dr. said that he thinks Kimmie’s body is shutting it’s self down. He said it was time to talk to hospice. Man was that a slap in the face. We talked about a feeding tube if she stays on the not eating track. Happily we both said that would not be a good idea for Kimmie. Dr Bhan said we have done every thing we could for her than some. I have always known that she would not live to be old. I know that she will go to a far better place than earth. She will be free of pain and seizures. She will be able to talk and run and play. I just have so many questions going through my head, do I find a gravesite now, and do I look at markers for her site???
Kimmie was awake late the other night. I was snuggling with her on the couch. I told her what I think heaven will be like when she gets there. I told her how she won’t have seizures, and won’t hurt anymore. I talked about the angels she will meet and how God will give her a great big hug. I told her about some of the angels that I know will meet her there. I know Jordyn and Reese will show her around and tell her all about heaven. I told her she will have a big job to do when she gets there not only will she have to keep an eye on her family but she will have to find us a place to stay when we get there. She just looked at me and smiled. I told her that we love her very much and we don’t want her to go but we know she needs to be free too.
I am doing ok with al of this. I know it’s the best for her. Oh how I will miss her here with us. She has been through so much in her life. I don’t think I could have been as strong as her. I used to pray that she would get well, or at least as well as she could be, but my prayers have changed. I now pray that she will soon be free of this body and be happy with her new and well body. I just can’t stand to see her go through all she has. I know when the time comes I will wish her back with me.
I think I need to switch kids now. Madison is doing ok. She says school is boring. She is doing well health wise. She still loves horseback riding. It was so hard to tell her about Kimmie. She says she understands.
Tony is doing well. He is busy with work and his fantasy football league.
I am doing ok. I just feel like the world is crushing down on us. I do know that what ever happens to Kimmie will be the best for her. I feel like I need to get everything in place and than maybe northing will happen. I don’t even know where to begin. I don’t want people to treat Kimmie and different than they do now. I think she would want it that way. I want life to go on. I know people will not understand how I can say that but they are just not in my shoes. I have been thinking about Kimmie’s life and I have came up with she is like a butterfly. I see it this way. She started this world as a caterpillar and than went into a cocoon (when she had the stroke in the hospital). She fought hard to make her way out and was than a butterfly. She now is beautiful and as delicate as the butterflies. She has her first set of wings now and is just testing them out. She always seems to be on the move like they are even when she is not feeling well.
I had better run for now. Please pray for Kimmie that it be Gods will now.

With much love,
Mary

Tuesday, September 7, 2004 10:12 AM CDT

Hello all,

Well Kimmie is now home. She was in the hospital for 13 days. It felt like a lifetime. She was not allowed to leave her room at any time due to the infections. She was in a good mood most of the time. She has to have her dressing changed 4 times a day. The nurse and I came up with a way to not have to pull on her skin every time. We cut some strips of Tegasorb (used on pressure sores). We made a little square around the wound with this and that we can tape the tape to it and not to her skin. It seems to be working well. She does not have a screaming fit like before. Her nurses in the hospital called her little Petri Dish (or Petri for short). Kimmie liked to keep growing new things in her wound. Just leave it to Kimmie to want to be different. She was not able to start back to school today. She may not get to go back until sometime in October. The dr. took her off the meds. for the MRSA. We have to wait at least 3 weeks to see of it will come back once the medicines have been stopped. Tony and I are both scared that it is just lying there waiting to show its self again. She is now just her seizures medicines. We did have to up one of them. Kimmie had one really bad day of seizures in the hospital. She over 16 of them in one day. We put her on the pulse ox to see what her o2 sats did. She dropped down to as low as 83 and one time it went down to 77. She did come back up. We will have to go see Dr. Sandoval to see what she wants to do about that.
Madison started 8 th grade today. Man on man do I feel old. She is happy to be on the top of the totem pole again. She spent a week her grandma in Harrisonburg (my mom) while Kimmie was in the hospital. She had a lot of fun. She says she doesn’t want to eat corn for a while. They had it a few times from out of their garden. She was a little bummed that her best friend was not in any of her classes this year.
Tony and I are doing ok. We are just happy to have our family at home. We are catching up on our sleep as best as we can. Tony helped me can 39 pints of hot peppers on Saturday. I loves them and I wont touch them. I would like to can some peaches this year if I can still find some. I plan on canning Applesauce this year too. Well that’s about it for now I need to go play with someone. Thanks again for all the prayers and visits to the hospital. The balloons and cards were a huge hit.

With much love,
Mary

Saturday, August 28, 2004 5:14 PM CDT

Hi all,

I have to make this a short update. I am home only do wash my clothes. Kimmie is still in the hospital. The surgery went ok. We were about to come home on Monday when they got back a culture back that she has a new infection. She now has two different infections. The new one is called Acinetobacter. This new one means new meds. as the ones she is on will not work for it. She has to have IV meds. They have had to a lot of blood work to check the amount of the medicine in her system. This new one can cause big problems with her kidneys. They also had to remove the cast yesterday so they can do a different kind of wound care. They have now added an acid wash to what needs to be done. This will be done 4 times a day. They have a hip brace on order for her she can’t bounce. She is like Tigger. She will be in the hospital at least until the end of next week. Oh yah, the wound is not closed all the way they want it to heal from the inside out. I just don’t know how she can keep a smile on her face with all she is going through. Well I had better go, I just talked to Tony and he said the hospital ran out of one of her seizure meds. I need to take in ours from home.

PLEASE pray that God will have his will with her. Her little body needs a break from all that is happening to her now. No, I don’t mean for her to die, I mean for her to be healed if that is what is in his plan.

Love to all,
Mary

P.S. The room number is 516
phone: 703-776-6516

Friday, August 20, 2004 8:07 AM CDT

Good Morning all,

I think I could just have copied and pasted the last update for this update. Well I guess I need to tell you that Kimmie did ok with the last surgery. She seemed to be healing ok and than it happened. As Dr. Reing put it yesterday Kimmie is her own worst enemy. Kimmie likes to set on the floor in a w position and bounce up and down. She is also a thin little girl with not much fat around her hips. All this makes for a very bad combination with stitches. If you could not guess where this is going, she has once again opened up her hip. We took her to see a plastic surgeon last week to see what he thought about why she was not healing. Well Dr. Reing was not very happy with what he said needed to be done. He had said that they need to go in and shave down the bone until it bleeds and than leave it open. He than wanted her to get a wound vac to place over it to pull out the infection. Well we (Tony and myself along with Dr. Reing) know that Kimmie will not leave that in her at all. We tried to tell him what kind of a child she is but he said she would leave it alone. I just love Dr.s that look at her and think she is so cute and good. If they only knew. Ok to make a long story short, Kimmie is having surgery yet again. She will be having surgery again today around 2:00 pm. We came up with a plan. They are going to go in and clean out the wound and maybe shave down the bone a little bit more. He than will close it up and put a cast on her so she can’t bounce. Tony and I talked him into the cast thing. We just think that is the only way to get her to stop. It should only have to be on for a few weeks. The surgery will be at Fairfax again. We will have to stay for a few days but I am not sure how many. Please say a prayer for her that all goes well and that this will be the LAST ONE for this hip.
Madison is doing great. She is getting taller and taller. She is just about as tall as I am. I took her to our local fair this week and she won herself a new pet. We now have a Green Iguana. He is less than a year old. She thinks he is great. Tony likes it too. As long as I don’t have to take care of it I like it too.
I am doing ok. Just feel like I have a new home this summer. I know I had a few people worried with my last update but believe me I just need to vent once in a while too. I love Kimmie with all my heart and it’s just hard to see her go through so much. I know that God has a plan for her and I trust him. I guess I just want in on that plan. Kimmie is one of the lights of my life. Sometimes it hard to see other kids doing everything she can’t. I know I should not look at them and feel that way but I just can’t do that. I am a selfish person when it comes to that. I want Kimmie to be running around and playing with friends. Well I had better go get things ready for the hospital. I have to pack my stuff and hers. I can’t forget the Barney. I am going to update the pictures on the picture page. One of them is of Kimmie’s hip so you can see what I have been talking about. It is kind of gross but not too bad.
Please say a prayer for Kimmie.

With much love,
Mary, Tony, Madison and Bimmer


P.S. Kimmie is like the butterflies on the side. Always in motion.

Tuesday, July 20, 2004 10:01 AM CDT

Hello all,

I don’t even know where to start this update. It seems this is the summer to be in the hospital. I guess I should start by saying that Kimmie did well from having her pins removed. That surgery went well, it only lasted about 30 minutes. We did stay a few days in the hospital to get IV antibiotics. Tony and Madison would come in the evening to see us. Madison wanted me to come home and asked over and over. It breaks my heart that I can’t be in both places at the same time. Well one night when Tony and Madison were ready to leave and I was saying good-bye at the door Kimmie looked over and said “DADDY, DADDY”. Tony just had to go back the room for just one more kiss. I just loved it that he got the guilt trip too. Kimmie had a few visitors while there. I want to thank Karel for stopping by and bringing the gifts for the girls. Kimmie also loved her visit from Uncle Chris. Well time to jump ahead a little. Kimmie was doing really well, up until July 11. I was at horseback riding lessons with Madison. When we got home Tony said he had changed the dressing on her hip and said that she now has a hole in her hip. It seems that little Miss Bimmer popped her stitches. Well we called the doctors to see what needed to be done. The Ortho. Dr. was out of town and the infectious disease Dr. wanted to see her first thing on Monday in the ER. Well off to the hospital we went. He said there was little he could do for her hip that the Ortho. Dr. had to fix it. We were finely able to see Dr. Reing (Ortho.) on Friday. He said that he would have to go back in and reopen the site and clean it out and try to re-close the hole. He said it could wait until Wednesday. Well not to be to gross but let me tell you about this hole. It is about the size of a quarter and you can see inside of Kimmie. We thought we were seeing dead tissue but the Dr. said it was bone. Well as you can tell Kimmie has to have another surgery. This time we have to check in the day before (today), and surgery will be sometime tomorrow. I just hope it is not like last time where she waited all day to have the surgery. We will be in the hospital a few days after the surgery to have IV meds. She will be at the hospital listed on her webpage. The only good thing is she will have another private room. PLEASE pray that this will be that last thing she needs to have done on this hip. Yes, if you have asked yourself is she in pain. She is but also she is happy too. I just can’t figure that kid out. I will try to update or have someone update on how she is doing after the surgery.
Madison is doing well. She loves horseback riding. She has been riding a horse (Sonny) that is as hard headed as she is. Mary, the lady that owns the ranch where she takes lessons says that if Madison can get Sonny to do as she asks she can ride any horse. Madison and I want to thank everyone for her birthday gifts. She loved then all.
I just want this whole year to be over with. I know I should not feel this way but is God out to lunch. I mean how much can one little girl have to be put through. I know they say he has a reason for everything but she has been over due to have a life. I love her so much and it breaks my heart to see her have to have surgery after surgery and to be in pain all the time. I know I will make people mad when I say this but right now I don’t see how God can let this go on. If he is the all mighty than why is he letting her suffer. Please don’t write and tell me that he loves her and us, I know that. I just think that one he either needs to take her home with him or give her a break here on earth. Unless you have set and watched your child cry because of the pain they are in from a surgery or watched their little bodies shake with droll coming out of their mouths you just have no idea how I feel at this point. I gave this little girl life and this is not a life in my eyes. She will never be able to run a play and have friends. You know what I mean by friends. Ok I had better stop before you wont come back and check on her. Please keep her in your prayers this week.

With love,
Mary

Tuesday, June 29, 2004 3:10 PM CDT

Hello all,


I keep saying I will update sooner but than here we are again, late. Before I get to the bad news I want to say Thank you for all the prayers for Kimmie. She was doing well and even stating to talk again. Well, talk may not be the word for it but she was saying a few words again. Oh how I love to hear her yell MOMMY. Her hip is healing great. I guess I need to tell you the bad news. She has the MRSA again; it never really went away it is around the pins that were holding the bone graft in place. It started to come back up to the top of the skin again. I took her yesterday back to the hospital to see the infectious disease dr. He agreed that it was back. He felt that the pins needed to come out in order for it really to get out of her system. When we got home I called the Ortho. Dr. to see when we could get the pins removed. I told him the sooner the better. He said that they may be able to work her in this week, said they would get back in touch with us. Well I got the call today that we go in tomorrow at 7 am. Surgery will be at 8. They are setting it up for a 2-3 day stay. There could be a chance that we come home the same day. I hope in a way that they keep her for a day and give her the IV meds.
She has a new aide. We switched home health care agencies. I didn’t have the energy or patience to deal with them anymore. They would send aide that didn’t know anything about seizures or ones that just wouldn’t show up. The lady that runs the office was nuts. I won’t get into that but let’s just say I don’t know how they stay in business. Please pray for her that all goes well with the surgery.
I need to wish Madison a very Happy Birthday (late). Her birthday was on the June 28 and she turned 13. It is so hard to believe that she is a teenager. I wanted to let you know if you wanted to send her anything she love Neopets. She loves the little ones that came in the happy meals. She loves the Neopets trading cards. She is doing well health wise. She is glad to be out of school for the summer. She is dropping Young Marines it is not like it used to be not as much fun. She is going to be taking horseback riding lessons. She will start out private and than move up to a class of 4-5 kids. She is very excited about it.
I have been doing ok. I was having pain again and went and had that checked out. The dr. seems to think it is scar tissue. My blood pressure is up. The nurse asked if I was under stress. I asked if that is what you call it. I will be keeping an eye on that, and yes I will check with my regular dr. about what to do for it.
Tony is doing well as always. He is busy at work and fixing up our house. We are getting some work done on the house the next month or so, we will have a great new look.
Thanks again for all your prayers and support. It’s great to have friends like all of you.

With much love,
Mary, Tony, Madison, Bimmer

Friday, May 21, 2004 5:54 PM CDT

Hello all,

Did Mary drop of the face of the earth you ask? No, not yet but maybe that would have been better than what we have been through. I am sorry for not updating sooner. Like I said before the web TV at the hospital is a pain. WE are home and have been for a couple of weeks.
Kimmie is doing better but it has been a long and hard road to get here. Kimmie ending up needing surgery again to open up the site and drained off the infection. She was one very sick little girl. Yes I will say it we could have lost her with this staph infection. She was to go into surgery on Thursday 22 to have it drained so she could not eat or drink from midnight on Wed. until after surgery. Will they took her down first thing on Thursday morning before Tony even made it back to the hospital. Well that didn’t last long I was told they had to wait until later in the day to do the surgery because of the MRSA and how they would have to clean the operating room after they finished her. So back up to the room we went to wait until after lunch or so we thought. Kimmie was in a lot of pain for the infection and we could not make her happy. We asked the nurse over and over when they were going to take her down and she called and they kept saying in an hour to two. We asked if she could have pain medicine and she said she called down to the or to ask her dr. if she could have some and she said he never let her know. I told her to ask the resident. The resident said he would not give her anything since she was an ortho patient. I was so angry I told her to call the or again and she said she did but her dr. never called back. Well it was after 9:30 pm yes I said pm that the dr. called us to come out to the nurses desk. I knew as soon as the nurse walked into the room and said that the dr. was on the phone what he was going to say. He wanted to wait until the next day to do the surgery. I went off on him. Yes I said things that I should not have said. He didn’t know that the nurse had tried to get a hold of him in the or all day. He said he would be right up. He came up and we told him all that had happened all day. He went off that Kimmie was in pain all day and they did nothing to help her. She didn’t have any of her meds. all day even her seizure meds. The last time she had eaten or drank anything was dinner the night before. He said they would not give him an or that they had less staff at night. He than took a look at the site and his face dropped. It was what they called a angry red. It was the whole length of the incision and it looked like a huge water blister the length of it. When we first saw the infection it was just one little spot at one side. The dr. said he would go and push for an or again. We felt a little better that he was going to finally take care of it. The nurse came in and said they were on their way up to get her. We got her ready to go down. I stepped out to get a drink of water and saw the dr. in the hallway. He said I hate to say it but we are off again. Someone came in by helicopter with a chest bleed and Kimmie got bumped again. Yes, Tony and I were pissed but we do understand that one. The dr. said lets make her comfortable tonight and we will take her down around lunchtime tomorrow. He made sure she had all the meds. she needed and would need until surgery. He went off on the dr.’s that let her be in pain for so long. That’s the one thing I really like about this dr. is you don’t mess with his patients ( they are to get what they need when they need it). Tony looked up numbers of other hospital to take her too. We felt that Kimmie’s rights were not met at all, up until the dr. came in and saw her. They gave her two kinds of pain meds. one made her very upset. She slept so-so that night. The next day they took her down and we waited for about an hour in pre-op for them to take her back. We had them give her pain meds. while we waited. There is nothing worse than to see your child in pain when they don’t understand why and you can do nothing to make it better. I kissed her before she went back and told her if she saw the Angels and wanted to go with them that mommy and daddy would understand, that we loved her and would miss her but we didn’t want her in pain. Tony went back with her until she was asleep. The dr. said it would be about ½ hour for they surgery. We waited and waited. The ½ hour went by and no word. The dr. finally called out about an hour later and said he was finished and would be out to talk to us. When he came out he took us into a small room at first my heart sank, (small room in all can’t mean good news). He said that it was deeper then they thought it was and it was around the graft they had put in. He thought she would have to be on IV meds. for a long time (months). She did well during the surgery but did drop her heart rate in the recovery room to about 35. She did this like three times. They had to give her meds. to keep it up and watched her a little longer. She did well after that. We now have a new dr. to add to Kimmie’s list, an infectious disease Dr now sees her. He also thought that Kimmie would have to be on IV meds. for a long time. Kimmie had to have her IV changed a few times while in the hospital. A couple was from her pulling then out or from the blowing from the meds. that she was on. He saw how bad Kimmie’s veins are and made a different plan. He put her on two antibiotics, one is not used in child as it causes growth problems in animals. We all agreed it was not a big deal if Kimmie was a little smaller for her age. We stayed another week and than came home.
You would think that it would end there not even close. Kimmie was doing well with the new meds. but came down with a yeast infection. So now she has medicine to treat that. She was doing better but than one day she decided to stop eating. We took her the dr. to see what was up. He said everything looked good but wanted to do blood work as well as a strep test. Blood work was ok and no strep but she did have Ecoli in her throat in large amount. Don’t ask me how she got that. She also had thrush (?) in the back of her throat. So guess what one more medicine to add to the bunch.
Ok time to jump ahead. She has her stitches removed and seems much happier now. It seems like we can move her leg better and with not as much pain. The Ortho. Dr. said it was ok for her to start standing again. When I first stood her she looked shocked. She is going to have therapy 3 times a week to get standing and moving again. She is not able to go back to school this year because of the infection. There are too many kids in her class that this would be very hard on. We have school until June 17. She is going to have a homebound teacher come in and work with her 5 hours a week. I guess that’s better than nothing. She is starting to say a few words again. She yelled mommy at me in the hospital while trying to grab me through the bed rails. I could have cried it was great hearing that again. I guess her favorite word now is “NO”. She just loves to yell it in all different tones.
I guess I had better jump to Madison. Wow is she growing up fast. When Kimmie was in the hospital she would come home and stay until Tony came home from the hospital. She said she didn’t need grandpa to come over and stay with her. She did a great job staying here and I am very proud of her. She had a little run in at school the other day. She was in PE and had one of the basketballs with a friend. Well it seems that another girl wanted the ball she had as well as the one she all ready had. Madison said no she was using it. The girl than fallowed Madison around the gym and was pushing her in the back and just being mean to her. Madison said she got tired of it and turned and tossed the ball to her, but the girl was to close and Madison hit her in the head with the ball. The girl than said she was going to kill Madison. Madison than went to tell the teacher and he told her to go dress back out. In the locker room the girl came up and pushed Madison in the forehead and she fell back onto the ground (just missing the bench with the back of her head). The girl than asked Madison if she was going to get up and fight. Madison said she didn’t want to fight. When Madison got up the girl slapped her across the face with all her might. She left a handprint on her cheek. This all happened last Friday. Madison had to write an apology letter to the girl for hitting her with the ball and they had to go to mediation and the girl got one day of in school detention. The school staff told me that the other girl didn’t handle the mediation well, but Madison did great in it. I was very angry that the girl only got one day of being in trouble and didn’t seem to care about it. Madison said she has to look over her shoulder in the locker room now. I think that is such unfair way to have to go to school. She should be able to feel safe in school.
I am doing ok. Just crazed like always. This Sunday I am joining our church. I was baptized when I was a teenager back home. I think after going to this church for over 11 years now it is time to become a member. Tony gave me an early birthday gift. We traded in our van for a new Honda CRV. It was way cool. Thanks honey I love it. I also wanted to say Happy Belated Anniversary to Tony. We have been married 11 years on April 17. That was the day Kimmie went into the hospital.

I have a HUGE THANK YOU to give to Sharon. Sharon is my best friend. She drove Kimmie and me to the hospital that night. We got the hospital around 9:30 pm and she didn’t leave until after 2 am (I think that was the time). She helped to hold Kimmie during some of her tests and when the cast came off. I could not ask for a better friend. I just hope and pray she knows how much she means to me. Tony stayed home with Madison and we had company over for dinner so he stayed with them. We know how long ER visits can take and we didn’t want to take Madison too.
Tony is doing great as always.
Well I had better end this for now. I want to thank everyone for his or her prayers for Kimmie. They do mean a lot to us. I also want to thank the person that sent Kimmie the balloons they were so cute.

With much love,
Mary, Tony Madison and Bimmer

Wednesday, April 21, 2004 1:01 PM CDT

Hi all.

It looks like Kimmey will be in the hospital a while longer. They got one of the cultures back this morning that showed a strep infection. They told us that was "MRSA", which means it is resistant to the standard antibiotics. Her doctor will be aspirating it later today, when he finishes his surgeries for the day.

Kimmey's nurse told us that she thought that it would mean at least another five days here, so that she could stay on the IV antibiotics until it is gone. They also took X-rays of her hip yesterday evening, but we haven't heard anything about it yet. I guess the doctor will give us the results of that when he returns.

Thank you for the continued prayers,
Mary, Tony, Madison and Bimmer

Sunday, April 18, 2004 7:47 PM CDT

Hello al,

I wanted to let you know that Kimmie is in the hospital again. She had a fever of 103.5. We had to remove her cast early. She has an infection where one of the surgery sites are. They have her on an iv. They are running tests to see how bad it is. They did xrays of her chest and they were clear. We hope to go home late on Monday. She looks pale.

PLEASE keep her in your prayers.

She has pulled out one IV all ready.

I am going to keep this short. I am using web tv and it is driving me nuts.
I also need some sleep have not slept since Friday night.

Love and Hugs to all,
Mary

P.S. Sorry about the spelling!!!! (Madison) I love you kid!!!!! :)

Tuesday, April 6, 2004 2:06 PM CDT

Hello,

Well once again I am way behind on an update. You would think I had fallen off the face of the earth.

Kimmie seems to have gotten over the strep. She does seem to be in some pain from the surgery. She will whine until you come and talk to her than she is ok for a while and than wants to be left alone. She does have a little bed sore from the cast rubbing her little bottom. I can only but so much on it as it is under the cast. I did add some more padding to the cast to that may help a little. She is now itchy on her tummy. She always has her hand down the front of her cast scratching.
She will give you really mean looks when it is time for her medicines. She fights you like a little tiger to take them. She can really make you feel like the worst person on the face of the earth.
She will go back to see the surgeon this Friday for a check-up. I hope he will give us an idea as to how much longer she will be in the cast. I would love it if he would say lets take it off today. (I can dream, can’t I)?
She had been ding really well with the seizures until today. She had not had any since right before she went into surgery. She did have a large one today. I gave her some Valium; she seemed to very upset afterwards and in some pain. The aide that was here said she shook all over. This is a new aide for Kimmie and she has never dealt with seizures before. I am working on getting her a new aide. I don’t feel comfortable with this one. I feel as if I can’t run to the store while she is here. I should be able to go and leave Kimmie in good hands but just can’t with this aide. I am not really sure that Kimmie likes her. She won’t eat for her and whines when she talks to her. I guess Kimmie knows whom she likes too.

Madison is feeling much better as well. She got an early birthday present from my dad and step-mom. They came up to visit over the weekend and dad told us to go out shopping to get Madison anything she wanted. She tried to get a dog. You have to give her credit for trying. She picked out a Playstation 2. I got her the dance mat to go along with it. She really loves that gift. THANKS dad and Lou. She is enjoying her spring break. She likes to stay up late and sleep in. What a life.

Tony and I are doing well. He is such a big help with Kimmie. She is hard to carry in the cast the way her legs are spread apart. She loves it when daddy comes home from work.
I have yet to go in for any of my tests yet. I will go whenever she gets out of the cast. I need to have the ct scan of my leg and lower back. I also need to go in for the sleep study.

Everyone has been so great to the girls and us. We have gotten lots of calls to see how Kimmie is doing and lots of well wishes. People ask how I am doing. I say I am ok. Some days I feel like the worst parent in the world. When Kimmie is in pain and I can’t make her feel better is really hard. When she gets upset and I have know idea what is wrong with her. I guess most days when I look at her I think this is all my fault. How can say this, easy. First I was the one who carried her for 9 months. I should have know the way she sweated and grunted that something was wrong with her. I feel that when I told the dr.’s after her second heart surgery to do everything possible for her may not have been for her but more for me. I just look at her and her quality of life and think that I let this happen. I feel like I just the dr.’s cut on her and cause her pain. I love her so much but some days I just can’t look at her very long. I feel like I let her down and failed as a mother. I am to make things better not worse.

Thank you for all your prayers for Kimmie and Madison. I do love all the kind words in the guestbook. I have to say that my niece made me cry when she said she loved Kimmie. I have always known she has but this is the first time I have ever heard her say it. Thanks Mandy that made my day!!!!

Love and Hugs to all,

Mary

Monday, March 29, 2004 10:41 AM CST

Hi all,

I guess I am a little late in giving you an update on Kimmie. I wish I could say it is all good news but it’s not.

The good news is we came home on Friday!!! J She seems to be in little pain from the surgery (or so we think).

The bad news is both of the girls got sick. Madison came home early from school on Friday with Strep I took her to the dr. on Sat. and that is what he said it was. Poor kid she felt so bad said it hurt to breath and had a fever. She is now feeling better.

Well guess who else we think has it, yep Kimmie. She won’t drink or eat, she had only taken a sip or two since she had surgery. She sounds really junky in her chest. I called the ped. Dr. and he called in some meds. for her as well (lucky us he didn’t have to see her too). We have a call in the Ortho. Dr. about what he thinks we should do for her. We are sure we will be heading back to the hospital. She can’t seem to get rid of the temp. It goes up to 102.5 with Tylenol it will drop a little but not past 99.

PLEASE, PLEASE say a prayer for her that it is nothing more than the strep. She looks pale and sleeps most of the time.

Will try to let you know if we have to go to the hospital and stay.

Thank you for your prayers and well wishes!!!

Love, Mary

Wednesday, March 24, 2004 3:57 PM CST

Hi all.

Kimberley's surgery was moved from noon to 8AM today, but we didn't find out until the hospital called at about quarter after seven. After rushing around, we we able to make it in and she was in surgery a little after nine. The surgery went well, and took just a little bit over three hours. Her surgeon cut the hip bone to make a better socket, then rotated the ball of the lwg bone to make a better fit.

The cast isn' as big as we expected. It starts at about the middle of her stomach, and ends above the knee on the right leg and just above the ankle on the left. And though it is bent it at the knee, it is more like her first cast, with her legs spread wide and a bar in between. I guess she won't be going out much for the next six weeks or so.

She's been resting fairly well since we got to the room. She is taking morphine for the pain, and valium to try to relax her and help control the spasms. She doesn't seem to be in much pain, except for when a spasm hits. She has already been watching Barney some, so she is at least a little bit awake.

Thanks for all the prayers and good wishes. And Uncle Pat and Aunt Claudia, Kimmey thanks you for the super soft stuffed dog and balloon!

Tuesday, March 23, 2004 3:15 PM CST

Hello all,

I wanted to let everyone know that Kimmie will be having surgery tomorrow March 24. She will be having it at:
Inova Fairfax Hospital
3300 Gallows Rd.
Falls Church, Va 22042
703-698-1110
She will be in the hospital 2-5 days. We will not know until tomorrow if she will have to go in the picu after the surgery. The surgery is scheduled for 12:00 p.m. The surgery will last 4-6 hours. They said we will be in the hospital 2-5 days. She will be in a cast from the chest down both legs, from 6 weeks to 3 months. Please take a minute from your busy schedules at 12:30 (she should be in the or at that time) and say a prayer for Kimmie.

Kimmie’s feet are getting better. It took over 10 dr.’s yes I said 10 to find out what was wrong with them. She was having an allergic reaction to the seizure medicine. She had been on that med. in the past. They said it was only on her feet (toes) because she has bad circulation in her legs. The blood could not bring it up her legs to the rest of her body. Just leave it to Kimmie to be different. She still is not talking but we know she can, if you tickle her she will talk.

I will try to update after her surgery if I can do it at the hospital. If not I will try to get Tony to update for me.

I added new pictures to her photo page. They are older ones but new to you.


Thank you all for all your prayer and support!!!!!!

With much LOVE,
Mary

Thursday, February 19, 2004 10:49 AM CST

Hello everyone,

Just when you think life might give you a break the bottom seems to drop out of that idea. I guess you can tell things are not going so well yet again. I have been holding off updating the page as if for some reason that would make it all not real. Well I guess I had better tell you the bad news. Kimmie has to have surgery yet again. She will be having surgery on March 24 at Fairfax. The dr. is going to work on her hip again (3time). Her left hip socket is too large and she is in pain. He plans on working on both sides of the hip. He will cut above the socket and pull it down as will also turn the ball part of the hip back around. He said the surgery would take 4-6 hours but looking more to 6 than 4. She will be in the hospital 2-5 days. She will have to go into a cast again from the chest down both legs for 6 weeks but could go up to 3 months. I have been looking for dresses for her to wear after surgery and can’t find any that are not the real dressy kind. I can only find dresses up to a size 6x and she needs a 7-8. As if that were not enough she has some strange blister looking things on her left foot. I took her to the dr. to find out what was going on and they have no idea what it is. The doctor went and got 2 other doctors and they had never seen anything like it before. The first dr. asked Kimmie if she liked being a mystery to him, she looked up and smiled. He said if they were not gone in a few days he wants her to see a specialist.
She is still having seizure. She had a drop seizure today and hit her head on the TV. She now has a bruise on her right ear. She just can’t seem to get a break. I guess on a good note her head is better from where she had the staples.
She does not talk like she used too. She would say mommy, dad, no, and her favorite nanny. She just makes an mmmm sound now. If you tickle her you might get a word or two out of her. I just wish we knew why this is happening.

Madison is doing much better health wise. She seems to be back to her old self. She is getting back into Young Marines. She is growing up so fast. She now wears the same size shoe I do but is still thin as a beanpole. J
I have to go in for a few tests. I have to have a sleep study and an MRI done. I will try to fit that in Kimmie’s life sometime.
Tony is doing well. He will be going out of town for a few days. I know at least one little girl that will miss him.
I wanted to thank everyone for the cards and gifts that you send to the girls. They love them all. Thanks again for all the prayers for Kimmie.

With much LOVE,
Mary

Thursday, January 15, 2004 12:08 AM CST

Hi all,

I guess first we should say Happy New Year to everyone. I know I am way behind on updating the page but as you will soon see it has been a zoo around here.
I want to first thank the girls Christmas elves for all the wonderful gifts that you sent to them. Madison was so excited about all her gifts. Her lips will never get dry as many lip-glosses as she got for Christmas. Kimmie enjoyed her gifts; as well she looks so cute in the purple jacket. I love her in that color. Your kindness will never be forgotten. Madison also loved her stocking that was sent to her. Wow was it stuffed full. It never really seems to hit home that so many people can love the girls and have never met them.
Well I guess it’s time to start in on all the drama.
Kimmie had her CT scan on Monday Jan. 5. We gave her sedation medicine by mouth and waited for her to go to sleep. We thought she went to sleep and as soon as we put her on the ct table her eyes popped open. We waited a little longer and her eyes closed they tech said I think she is asleep now. Well little Miss Bimmer opened her eyes and said “NO, NO, NO”. The nurse didn’t think that the dr. would give her IV sedations on top of the others but she said we could try it. So back to the room we went to get the IV put in. We than headed back to the CT San and the dr. came and gave her about three fourths of the IV meds. WE waited and she closed her eyes again. The dr. said she thought that did the trick and went to pick Kimmie up and put her on the CT table. Kimmie opened her eyes and yelled “nin no nin no”. The dr. said I should not say this but you are a little shit. She than gave her the rest of the IV meds. She said she has had the full dose of both meds. Kimmie fought the meds. like crazy. She had her eyes open during the whole CT. The reports said that there was a change in the tissue but Dr. Sandoval said it hadn’t changed. Kimmie still is having a lot of seizures.
As if that were not enough for her, she had to make a trip to the ER yesterday. She had to get 15 staples in her head. I had sent her to school and she was happy and seemed fine. When she got to school they took her coat ff and went to put her hair up in a ponytail, than they saw blood in her hair. They looked and saw a cut on her head. They called me and told me what they had found. I could tell be the sound in their voices that it was bigger than a scratch. I flew to the school to get her. I was glad there were no police along the way. I took her to the ER. She said it needed staples that stitches would bug Kimmie more. She said she was going to put in more than what she would for anyone else sense it was Kimmie. She said she didn’t think she could pull them out but she wanted to make sure it would hold if she did mess with it.
You would never know the child has staples in her head the way she is happy and bouncing all over the place. We think she must have had a drop seizure and hit her head on the cabinet with the videos on it. She only had blood under the hair and not on the top. She will get the stitches out in a week.
Now on to Madison. She was sick the week after Christmas. She had a fever and slept a lot. She slept on day until after 2:30. If you know Madison that is so not like her to sleep. She was better by the time to go back to school. Well she got sick again last week and had to make a trip to the ER to get fluids. They said it was another episode of the Cycle Vomiting syndrome that she has. She is much better now and is back to her self. We signed her up to go to a church work camp this summer. She will be going to Ohio for about a week.
I guess I should also add what’s going on with me as well. My right arm has been going numb and at one point I lost all feeling in the arm for about 30 seconds. I went to see Dr. Sandoval and she said I have Corporal Tunnel Syndrome and gave me a brace to wear. She also said I have restless leg syndrome and gave me some medicine for that as well. It seems to be working well so far. My legs don’t want to party all night now.
Tony is doing well. He has been busy at work.
Kimmie’s new aide is great. Kimmie really seems to love her.
Well that’s about it for now will try to update again soon. Thanks again for all your prayers and support!!!

Love to all,
Mary and Kimmie

Sunday, December 21, 2003 1:49 PM CST

Updated Monday Dec. 22

Prayers are needed please!!! I just got a phone call from my mother that my Grandmother's twin sister just passed away. My grandmother could use all the pryaers she can get right now. Her and her sister would have been 87 on Dec. 31. I think 87 that is.

Hi all,

We would like to wish you all a Merry Christmas and Happy Holidays!!!
It’s hard to believe that Christmas is just around the corner. It seems like this year has gone by so fast.
I guess I had better get on with the update about the girls. Kimmie is doing so-so. We seem to have good days and bad days. She is still having seizures. We took her to see Dr. Sandoval her nuro. She agreed that we could take her off the last medicine that they put her on. It was making her to sleepy and was not helping her with the seizures. The dr. still feels we should try the diet. I gave Kimmie cream to drink one day and that didn’t go over very well. I guess Tony and I have some more sole searching to do. Kimmie will be having a CT scan done on Jan. 5. It took a lot of talking to get the doctors to agree to have it done at Prince William Hospital. It is closer than having to drive her to Fairfax. We had to get the head of the Doctors to agree with this. She will also be going back to the Ortho. Dr. to see about her hips sometime in January. She has been getting back to her old self after coming off the meds. She loves her new aide, Ruby. Ruby was out for about a week or so with the flu. She was kind enough not to come while she was sick (getting over it). She is so good with Kimmie. It’s great knowing I can run out and Kimmie is safe at home. Kimmie is learning how to read her last name in school. I am happy to say that Kimmie is not the class bully anymore. They have a new little girl in the class that gives the teachers their run for their money.
Madison is doing better. The heart dr. said that her heart is doing ok for now. She still needs to drink as much as she can drink. He said what she has is not that serious, but we need to keep an eye on it. She is doing great in school. The teachers are going to take her out of the resource class that she is in. They said she is the top one in the class and is getting board. She has been counting her gifts from her Christmas elf. We have let her open a few of them up. She was so shocked to see all the gifts for her. She can’t wait until Christmas.
I am feeling much better since I had my surgery. I am still a little sore in spots but over all much better. I have been having some pain in my right hip that I need to go get checked out sometime. It hurts from my hip down my leg.
Tony is going away for a few days this coming week with some of his family. They are going skiing. I would be lying if I said I wasn’t jealous. I am glad that he is getting a chance to get away and have a little fun. They will be leaving on Monday and getting back Christmas Eve.
I want to say a special thank you to Tony’s sister Anna. She is Kimmie’s Godmother. She bought Kimmie a swing for outside as well as a few other gifts. Kimmie is going to love the swing. Anna, your kindness will never be forgotten. I hope you know how touched I am my your thoughtfulness.
I would like to ask you all for prayers for a friends of ours. Their daughter Holly is in the hospital. Holly has seizures and has not had them in over 3 years. She has had several the last few days. She will be going though some tests to see what’s going on. Please say a prayer that she will stop having seizures and be able to come home for Christmas.
I also update the photo page as well. Have a Happy Holiday and may God bless you all.

Love,
Mary

Sunday, November 23, 2003 9:00 PM CST

Wow itÂ’s been a while yet again. Seems like there is just never enough time in the day. It has been a very busy few weeks.
ItÂ’s hard to believe that Kimmie will be 10 on November 29th. Every year with her is a blessing. We are taking her class to Chuckie CheeseÂ’s. We take them there as a field trip. They all seem to have a good time.
Kimmie has been having more and more seizures. She had one at school the other day that was over 7 minutes. I was on my way to the school when they called me. I know it scared them to see her that way. I took her to see Dr. Sandoval. She added another medicine to the one she all ready takes. She has taken this one on the past. The only down side is that it makes her mean as a snake. The dr. suggested that we try the Ketogenic Diet with Kimmie. Well Tony and I are not so sure about doing that. The diet is high in fat no cards, and low to no protein. You have to not feed the child for a day to two days before starting the diet. They can only eat small meals and little liquids. You have to weigh out their food in grams. They have to drink cream. If you donÂ’t know Kimmie one of the things she loves most in life is to eat. I have a hard time taking away one of the few things in life that she can do and enjoy. They canÂ’t tell us that the diet will work for her. Kimmie may also be having surgery again on her hip. It seems that it is back to the way it was before she had the last one. She doesnÂ’t want to weight bare anymore. She will just collapse at the knees if you try to stand her up. The dr. said she would be in a cast for 6 weeks to 3 months. I am not looking forward to having her in a cast again. We have to take her back in a few weeks to talk about it a little more and try to figure out to do next.
On a happier note: Kimmie was able to get on the wavier. This allows her to have an aide to come in and help with her. I just wish they had gotten the paper work done before I had my surgery. It would have been great to have the aide than. Well we did have one aide come in. She seemed nice to Kimmie. She was not from the US and I don’t speak Spanish. I was not always sure she understood what I was saying. If I asked her something about Kimmie she would laugh or would say, “don’t worry.” Telling me not to worry is like telling Kimmie she can’t watch Barney. It’s just not going to happen. She left Kimmie in the tub by herself. This scared me to death. I was just glad that I was at home and saw what happened. I was not very happy about it. I had told her a few times before that you couldn’t leave Kimmie in the tub alone. She would just say “ok.” I just didn’t feel comfortable with her anymore-watching Kimmie. I want an aide that I can trust watching her so that if we go out I know that Kimmie will be safe. We have a new aide coming in tomorrow. She has a son with special needs. She knows a lot about some of the things that Kimmie does and how to handle them. We will just have to wait and see what happens.
Madison is wearing the heart monitor. She is still getting dizzy at times. We are still in a wait and see mode as to what is going on with her. She did great in school the first nine weeks. She is getting ready for Christmas. She wants a telescope. She also happy that Tony says she can have her own set of keys to the house. It is so hard to believe how old she is now. It just seems as if she was born.
I am doing ok. I feel a lot better now days. I still have a few sore spots here and there. Some days I feel like I want to pull my hair out. I just wish I was asleep and this (life) was all just a bad dream.
Tony is doing great. His company moved buildings this past week. He was happy to still have an office to himself. He has been working hard and is out of town for a few days.
I wanted to ask all of you to stop by Hugs and Hope. They are having a bike (motorcycle) raffle. First prize the bike. Second prize is $5,000, 3rd and 4th prizes are $2,500 and 5th –10th prizes are $1,000. They are only selling 750 tickets. You can buy a ticket for yourself or buy one for the kids on the site. If you buy one for the kids get the money. The money that the raffle makes goes to help the kids medical funds. I think giving someone a raffle ticket would make a great Christmas gift. You never know they could win $5,000 in cash. The web address is www.hugsandhope.com.

I added new pictures to the photo page!!!

Take care and God bless,
Mary

Wednesday, October 22, 2003 4:03 PM CDT

Hello all,

Well it’s seems yet again I am behind on my updates. All I can say is it’s been a hard few weeks.
Kimmie is still having seizures. She is acting out again. She is not being very good at school. She gets mad for no known reason. She will bite the other kids in class. She has even drawn blood. She has been pulling hair. We have upped her medicine but that didn’t seem to help any. We call her the class bully. I just hope that this will soon stop and the nice sweet Kimmie will come back out. The teachers are at a loss as to why this is happening. She still likes to get up early and poor Tony still has to be the one to get her out of bed.
We are applying for a waiver for Kimmie. With this waiver she will be able to have an attendant to come in and help with her. She would also be able to get Medicaid, which will cover everything that our insurance will not cover. They are coming out tomorrow to fill out paper work and to meet Kimmie. They have to see her to make sure she is disabled. I guess us telling them is not enough.
Madison’s baptism went very well. She had a lot of family come to church that day. Tony had to stay home with Kimmie as she was in a bad mood. The service was very nice and yes I even had a few tears. We went out to lunch afterwards and had a nice time. Madison and I went to Love Feast that night at church. It was hard for her to sit for so long and not say much. She washed my feet during the feet washing time. I have to say how proud I am of her for her decision on making God a part of her life.
Well I guess now is the time to tell you the not so good news of the past few weeks. First my grandfather passed away on Oct. 11. He was 94 years old. He will be missed very much. Madison and I went down to the funeral. They played a song of my grandfather singing a song. I had to bite my tongue to keep from crying my eyes out. I am not one to let people see me cry. When we got to my dad’s house he told us that one of my great aunts had passed away as well. The service was very nice.
Well as if that was not enough for one month, we got some not so good news about Madison from the Cardiologist. She had been saying for the past couple of months that when she stands in formation at Young Marines that she gets dizzy and feels as if she is going to faint. She has also been complaining of a lot of headaches and feeling tired. She was due a fallow-up with the heart dr. so we went Tuesday. He said her heart is not pumping the way it should. They took her blood pressure 3-4 times. When she was laying down and than when she stood up. Her blood pressure dropped but her heart rate went up 40 beats. He said it should only have gone up maybe 20 beats. He said her brain is not getting the blood flow that it needs. He wants her to drink more fluids and see if that will help. He would like her to drink up to a gallon of fluid a day if she can. He said if this does not help that in 2 weeks than he wants to put her on a monitor. He said she would also have to go through some tests to see what is going on. He also wants her to have more salt. He did say that her mitro valve (?) was looking ok at this time. PLEASE keep her in your prayers. It seems like it will just never end in this house.
Well Kimmie is crying so I have to cut this short.

With Much Love,

Mary

Sunday, September 28, 2003 4:04 PM CDT

Hi all,

I know I know I am way behind on an update. I have been trying to rest and stay away from the computer while I heal from surgery. More on that later.
Kimmie has been enjoying school again this year. She is in 4th grade. It does not seem she should be that old. She loves school. She has a great set of teachers as well as the entire specialist team. She has had a few off days at school. Do you think it could be because she likes to get up at 4:00 am? I have felt so bad for Tony having to get up with the little party girl. She is still having seizures. She had one the other night around 3 am. The ones at night still get to me. We have noticed that she does not move around like she used too. She used to come over to the steps and bang on them or go back to her room and pull everything off the shelves. She just plays in one little area anymore. I just hope that something is not wrong with her hips again. I hate to see her like this. She is working at choosing between three pictures at school. They are also working on body parts with her. It would be nice if she could point to what hurts. We had to switch diapers again. The attends broke her out and she would have a temper tantrum when she was wet. It was not much fun cleaning a wet shredded diaper off the carpet.
Madison says she is doing well in school. She has showed me a few papers and so far they look good. She went on a mud run with The Young Marines. Yes, they ran through mud. It was a 5k run and at the end was a huge pit of mud. She had a great time. On the way down their bus broke down. They had to wait on a new bus. The kids slept in (on) the McDonalds parking lot.
Madison has decided to give her life to God. She is going to be baptized on Oct. 5. She has been calling all the family to come and watch. I have to say that I am proud of her. I just hope she is doing this for her and not for what she thinks myself or others want. She says she understands what it means to be baptized.
Well as you can tell I made it through my surgery. It went well. I had my first and only hot flash the morning after surgery. It didn’t help that I had a migraine and felt nauseated. Well the dr. came in and gave me a patch that had estrogen in it. That did the trick. I had surgery on a Tuesday and came home on Thursday. I had my first catheter with this surgery. Know one told me you would have a hard time going to the bathroom after one. The nurse made me feel like a little kid. She turned the water on in the sink and than gave me a drink with a straw in it. I was to blow into the straw. She said it relaxes the muscles you need to pee. Than there was a little thing called you have to pass gas before you can go home. Do you know how hard it is to pass gas when you don’t feel like you have too? Well I made it home. Tony stayed home with me the week after my surgery. He has been so great. He wont let me doing anything that I should not be doing. He has washed the clothes and dishes as well as vacuum. We have had so many great people bring in meals. It was nice that way Tony could work from home and takes care of the house and girls and not have to cook dinner too. He is a great cook, but he didn’t have to the first week. I have been back to the dr. for a two-week check up and she said I looked great. She said that it looked like I was healing well. She did switch me from the patch to a pill. It seems to be working well so far. I thought I would have been more upset over having had the surgery but so far I feel great about it. I am still a little sore but not bad enough for pain killers. Man I was on some good painkillers there for a while. They gave me some very strange dreams. The dr. said I could drive and can take a bath not just a shower. The best part was she said I could cuddle Kimmie. Tony had to set her on my lap and move her off. She said as long as I don’t move it would be ok. It was a very long two weeks not holding her. I would play with her but holding her is just different.
Well I had better get off here for now. I will try to update again soon.

With much love,
Mary

Monday, August 25, 2003 10:25 AM CDT

Hi all,

Well I guess I am really behind on this update. It seems as if time has just flown by.
Kimmie has been having seizures again. She will go a day and not have any than have 6 the next day. We are not really sure what is up with her. She goes in for her routine check-up with Dr. Sandoval on Tuesday. I guess we will see than what she wants to do. Kimmie is now out of pampers and into the Attends youth diapers. : ( They cost so much for a box of them. The insurance company does not think that incontinence is not a health issue. She has been full of her self the last few weeks. She has been in great moods most of the time. I had to baby-sit our Godchildren the other day and the girls went along with me. They have a dog and Kimmie has never liked dogs in the past. Well she freaked out over this dog. She would laugh her little head off over this dog. She would laugh so hard she would fall over laughing. She even let the dog give her kisses. She would try and chase the dog around the room to pull on her. At least now people don’t have to pin their dog up anymore when Kimmie comes over.
We had a family cook- out over the weekend. One of Tony’s brothers and his wife came home for a visit. It was great to see them again. We got to see the pictures from their wedding last year (Christmas time). Claudia made such a pretty bride. Tony and Madison went down to the wedding, Kimmie and I stayed at home. It would have been a long and hard trip with her. The company that Tony and one of his brother’s works for have a moon bounce that the employees can use. They brought it over for the kids to use. They had such a great time in it. Uncle Pat even had to take a turn in it. It kind of pulled at my heart to not have Kimmie be able to get in and play with all her cousins. Sometimes it’s so hard to see the young niece and nephews do all the things that Kimmie should be doing. Don’t get me wrong I love the kids to death, but I just wish Kimmie were able to play and walk and talk. I know it may be a sin to feel that way but I can’t help but wish my little girl could be like the rest of the kids in the family.
It has been 9 years since all of Kimmie medical stuff has started. Nine years ago this past week Kimmie had her first heart surgery. Tony and I didn’t seem to be to upset with the first heart surgery. I think it was just a shock to hear that she needed heart surgery. We had gone to in for tests to see why she wasn’t gowning. We than found out she had a heart problem and if it was not fixed right than she would not have lived to be a year old. She was 8 months old at the time. Her heart was 3 times the size it should have been and was the size of an adult heart. It’s hard to believe that she has had so many surgeries since than. She did well with that surgery. Her life was changed forever by the one 5 months later. Some days I just want to pull my hair out thinking about what that dr. did to her and never even said he was sorry. I will never hear my girls say, “she did it” or mom she took my toy or clothes.
Madison is doing well. She had to get a check-up for young marines. She has put on a little more weight; she is up to 67 pounds. She does have more blood in her urine again. I will have to call the urologist up and see what he thinks. She passed her Corporal test. She will go up in rank on Wed. evening. I am very proud of her. This is the hardest test to pass in the Young Marines. She is also ready to go back to school. She won’t know until the first day of school who she has as teachers. It so hard to believe that she will be in 7th grade. It seems like she was just born.
I have been getting things ready for my surgery. I had to buy a few loose clothes to wear afterwards. Tony’s mom made me two small pillows to use when I ride in the car. They are to go between my stomach and the seatbelt. She did a great job on them. I have a few pre-op appt. the week the kids start back to school. It’s nice to know that soon I will be pain free. Yet it makes me sad to know that I will never be able to have any more kids. We were not planning on having any more, but it’s the thought of knowing that I can’t that get me down.
Tony is doing well. He had the guys over to draft their football teams. I hope his team does well. The guys really seem to enjoy doing this every year.
Well that’s about it for now. Sorry so long between updates.

Love to all,
Mary

Tuesday, July 29, 2003 10:56 AM CDT

Hello all,

Well it’s been a while since I updated on Kimmie and the rest of the family.
Kimmie has been having a few seizures again. She started them back again the day I went in for my mammogram. I guess she wanted to keep pop pop on his toes. She had a large one in the morning before I left and than had two smaller ones while I was gone. She has had a few more off and on since than. She woke me up toady having one. She seems to be ok now. She still is eating well. She still loves to yell to the top of her lungs. She will laugh her head off now if you say, “come in”. I am not sure why that is so funny but it cracks her up.
Madison seems to be doing well. She does have more blood in her urine again. We are waiting for them to run more tests on it. She just asks why all the weird stuff has to happen to her. She has also has had another small health issue that she told me I could not tell you about. The dr. did give her some meds. for it so she is doing ok from that. She just now has a new nickname from mom and dad. Her second hamster died as well. She didn’t have much luck with the male ones. I took her to a different store and she now has a female one. She is doing great. Keeps Madison awake at night. Madison was able to go the beach with friends of ours for the day. She had a great time Thanks Jen. For taking her along with you guys. Madison has been playing outside a lot this summer with all the kids.
Like I said I went for my mammogram. I had felt a lump and went to the dr. to get it checked out. The mammogram was nothing like I thought it would be. Everyone says they hurt so bad. Well the pain I had from the endometriosis was much worse than that. The lady that did mine was so funny. I also had an ultrasound done as well. The dr. was there to read the films while I waited. I am very happy to say what we felt was not a lump but a gland. The dr. said that they could just be in different places. He did say that I had fatty type tissue that could be felt as well. He said that some women are just more lumpy than others. He said to come back in 5 years unless I find anything else. I have a date for my hysterectomy it will be Sept. 9. I can say that I am a little scared. I have found a great web site that has a lot of great info. on it. It’s just for women that have had or are having surgery. It’s nice to be able to ask them all the weird questions. The part I dread about the surgery most is not being able to do anything afterwards. I wont be able to left Kimmie for at least 6-8 weeks. I am working on finding people that can come in and help get Kimmie off the bus. Madison can’t lift her. I feel so bad for Tony, he will have to do everything, cook, clean, wash the clothes, take care of both kids as well as me. I will just be happy when it is all over and I will be pain free.
Tony is doing well. He is getting ready for fantasy football. If you don’t know Tony he is a football freak. He heads up his own league. Kimmie loves for him to pick her up and dance when his team scores.
Well that’s about it for now. Thanks again for every ones prayers and support.

Love to all,
Mary

Wednesday, July 9, 2003 10:38 AM CDT

Hi all,

Well like always this update is a little late. Kimmie seems to be doing well. She has not had many seizures at all. She has had some very soft BM’s the last few days. All I can say is I want to rip out the carpet where she is. She is still eating well. I had planned on her going to summer school but that has changed. She was going to be on a bus that has a very bad driver. This lady drives not only in her lane but in the lane next to her as well. She changes lanes without using her signal. She looks in her purse for her sunglass and does not watch the road and than crosses over the line and than has to jerk the wheel to keep from hitting a car. I know all this as during the school year I went on a field trip with Kimmie and she was the bus driver. I did talk to the people in charge of the buses and told them I didn’t want Kimmie on that ladies bus again. Well when I called to find out what time the bus was to come for summer school and who the driver was going to be I didn’t send her. I may drive her to and from summer school but than I would have to drive her to the field trips as it would be the same lady driving for the trips. I feel bad not letting Kimmie go to summer school but I feel as if I am doing what’s best for her. Well enough on that subject. Kimmie has been talking more this past week. She says things that sound like real words. Her latest is boo, bumpy, and she still loves to yell nanny, mommy, daddy and no.
We had a nice 4th of July. We spent the day at Anna house. Tony and Madison stayed outside most of the day around the pool. I had planned on being outside too but Kimmie had other plans for me. It was very hot that day and she can’t take the heat so she stayed inside watching Barney. She didn’t mind that part at all. Well Anna has an older daughter so her house is not little kid proofed. Kimmie found this very fun to check out. I went in to check on her and she had found a way to open the DVD player. She found the pictures that were in her reach. She found that she could turn knobs on the stereo. I than just decided to stay inside with her to keep her out of trouble. At least we stayed nice and cool. Thanks Anna for having all the crew over to your house. Kimmie and I left before everyone else so she could have her meds. Tony and Madison stayed at set off fireworks. They had a great time. I watched the cities and all the ones that were being set off around our house. Kimmie crashed out on the couch watching Barney. It was a nice day all around. It’s nice to hang out with the family and the kids loved the water.
Madison had a nice birthday as well. We had a small cookout for her. Her grandparents came over as well as some of her uncles. My mom came up and brought my niece with her. We didn’t tell Madison that Brandi was coming up. She was so excited to see her. She loves Brandi a lot. Brandi is great with her. Brandi helped her put on make-up. My mom took them shopping and they had a blast. Madison went to Build A Bear. She went the weekend before with me than she went with my mom. Madison had a great time shopping. I need to thank a very special lady (DEB) and her husband. They sent Madison a birthday box. On the website Hugs and Hope they have a program set up that every child including siblings is to get a birthday box. Well when I told Deb that Madison never got hers she sent her one right out. Madison’s mouth opened wider and wider as she pulled the stuff out of the box. She loved everything that was in the box. THANKS Deb you were very kind to her. I know at times Madison feels like she has to take the back seat to Kimmie and you made her feel very special. Tony took Madison to buy a hamster for her birthday. She didn’t even have it a week before it died. We took it back they said it had gotten diarrhea. She was so sad she cried and cried. We now have a new hamster. She says this one keeps her awake at night. He likes to make noise.
I am feeling better from my surgery. Tony went with me to my follow up appt. The Dr said I had two choices. I could either take Lupron shots for six months. The shots out you into a fast menopause where you go through hot flashes, mood swings, and bad headaches. They make the systems stronger than when you go through it naturally. I could only take them for six months than have to come off them. The endometriosis can always come back after that. My second choice is to have a total hysterectomy. They would take both ovaries, uterus, and cervix. She will have to the abdominally as I have too much scare tissue. I am going to just do the hysterectomy. I plan on doing this when the kids are back in school. I thought this would be easier for Tony and the kids. He can work while the kids are in school. I know it’s going to be a long six to eight weeks. I wont be able to lift Kimmie at all. I will miss cuddling my baby. I love to cuddle her at night. I know that in the long run it will best for me as well as my family. I have to go in for a mammogram and an ultrasound. I found a lump in my right breast. I went to the dr. to have it checked out. She found another one on the same breast that was larger than the one I felt. She also found one on the other breast. She thinks that they are fibro cysts. I am praying that is all it is. I feel as if I am falling a part. I told a friend of mine they could just start at the top and just take everything I don’t need anymore. I think I may lose my mind if anything else goes wrong in this family. I just don’t get it why does my family have to go through so much and others just breeze through life. I want to thank everyone that went to Hugs and Hope’s raffle. They raised over $1000.00 for the two kids. They now have the fall raffle going. Well I had better end this update for now. Thanks for all the prayers and support that you send our way.

Love to all,
Mary

Thursday, June 19, 2003 11:12 AM CDT

Hello all,

Well it’s been a little while since I updated the page. All I can say is it’s been a little crazy around here.
Well Kimmie is doing well now. She still has a few seizures here and there but nothing like before. She is doing much better, her attitude is much better. She is eating very well (like a horse).
She seems to be getting heavier each day. Her last day of school was on Wednesday. She came home all happy. I asked her if she was all done with school for the year. She gave me her little smile and said “yah, me done…me done.” Than she laughed liked crazy. She is a little ham at times. She got used to daddy last week while I could not do much after having surgery. I went to get her out of bed on Monday and she pushed me away and yelled “No Daddy.” She was mad all morning getting ready for school. She really wanted her daddy. I guess I can be replaced fast with her. J Kimmie will be starting summer school in July for a few weeks. I am so happy that she can go it keeps her in the routine. They will still go on fieldtrips each week as they do in the regular school year. They will be going bowling, that’s one of her trips that she likes the best. To her nothing better than bowling and fries.
Madison is doing great as well. Her knee still hurts from time to time. She just finished 6th grade. It’s hard to believe that she is that old all ready. It seems that she was just a little baby in my arms. She is very happy to be out of school for the summer. She wants to have friends over most of the summer. She will be 12 on the 28th of June. She wants to go to Build A Bear Workshop. She loves that store. She also wants to go shopping. It seems that she has decided to grow up but not out. Her shirts her all belly shirts on her. I plan on taking her shopping sometime next week. She is waiting on the new Harry Potter book. We have one order that we are going to go get Friday night. The store is having a Harry Potter party that night. She wanted to go to it, so off we will go. They will sale the books at midnight. They are going to give out numbers than call the kids up one at a time to get their books.
I know many of you would like to know how my surgery went.
Well it went ok I guess. I had to have a cyst on my ovary removed. When she was moving it around it burst. She did get part of it to send of to pathology. We have not heard anything from that. I also had Endometriosis. She burned that off. She also had to free one of the ovaries that were stuck in scare tissue. I am not sure yet where the scare tissue came from. She told Tony that she plans on putting me on medicine for a while. I guess it is to try to keep the Endometriosis and cysts down. If the meds. don’t work than I have to have it all removed. I was in a little pain for a few days. Tony took the best care of me and the kids. I always knew Tony loved me but last week I saw how much he really loves me. He was so kind and gentle. I could not bend over to put on my underwear after the surgery and he got down on his knees to help me. He is a great husband and father. I am still a little sore but doing well. I go back to the dr. next week for a fallow up appt. Thank you all for the prayers.
I did do the Relay for Life over the weekend. I only walked 4 laps. I was still very sore from surgery. I walked one for Tony’s dad, one for a friend Marsha that just found out she has breast cancer, and the last two laps were for Jordyn and Kharisma. Jordyn lost her life to cancer and little Kharisma is fighting for her life as well but not from cancer. When our team captain found out I had just had surgery on Tuesday she said I had to set down. She was not very happy with me that I was there. I just felt the need to be there and I was doing well. I did take it easy.
On Saturday night my nephew (my brother’s son) graduated from high school with honors. I am very proud of him. He is such a great kid. He always makes a point to play with Kimmie when he sees her. On Monday night my niece (Tony’s sister’s daughter) graduated from high school as well. We are also very proud of her. Even though her Uncle Tony would have liked for her to go to VT not West Virginia. They both had parties the same day but they were two hours apart. I took Madison on Sunday to James’s party while Tony took Kimmie to Mandy’s party. We all had a great time.
I want to thank everyone that entered the summer raffle for Hugs and Hope. I will let you know later how much money was raised for the families. I know they will be very happy with all the help. Well Madison says I write too much so I had better end it now. Thanks for all the prayers and support.

Love to all,
Mary

Tuesday, June 3, 2003 10:19 PM CDT

Hi all,

Well I have to say we have been having a good week around here. Kimmie now has her new Afo’s. They have bright neon green straps with purple padding. Everyone can see Kimmie coming. We had to get her some new shoes to fit over the new braces. She went from a size 9 to a 13 ½. She looks like she has huge feet now, but her feet are still small for her age. She had an appt. today with Dr. Sandoval. We were able to get a new weight on her or at least a close one. She is now 48–49 pounds. She has been eating like crazy on the new medicine. Maybe we should give it to Madison so she can eat more. Dr. Sandoval said she was looking good and if she starts to have more seizures we can up her Topamax a little more. As she puts on weight we will need to adjust it more. We decided to hold off on it right now even though she is having a few seizures here and there. She gave me a special gift today. She played with a toy the right way. She has this toy that is a little bed shape and has these little egg shape things that you have to push down. When you push one down the others pop up. Well she set there for over 15 minutes and pushed the ones that were up down. She was very much into this toy. She plays with toy but she does not play with them the right way. Most of the time they end up in her mouth. It’s the little things that make this mom proud.
Madison has been sick. Well not very sick but has had a low-grade temp. the last few days. She did say last night that she was aching all over. She feels yucky than feels better and wants to go out side. She has missed the last two days of school. I am crossing my fingers that she goes to school on Wednesday. She seems to be feeling better tonight. Madison brought tears to my eyes the other day. I was looking through her school notebook and found something she had written about Kimmie. I am going to put it on here. I think people need to know how the siblings feel about their special needs sibling.
Living With A Sister Who Has A Disabilities
By: Madison

Hi, May name is Madison G. and I have a 9yr. Old sister named Kimberley.
She is fun to play with….but, there is one problem, she is disabled. When Kimmie was 2 yr. old she had a stroke. It destroyed the right side of her brain. She can’t : walk, talk, read, or write. She often cries, pinches, bites, or kicks when something is wrong. Sometimes she has seizures. Seizures are when your muscles stiffen, and your whole body trembles. Everyday I wish I could have a sister who could do everything a normal 9 yr. old could do. She is in 3rd grade and loves Barney. Since your right side of your brain controls the left side of your body, she can’t use her left side of her body. She usually doesn’t go to school because she is always going to the doctor. She also loves yogurt, and music. Her favorite song is “Do Your Ears Hang Low?”

When I read the part about her wishing for a sister that was normal I cried. I did like the fact that she wrote down how she was feeling. She did say things about Kimmie that I don’t tell most people. Most of the time I say she can’t talk or walk but I never seem to say she can’t write or read. I guess that goes to show how different each of see her and how we feel about her. I know Madison loves Kimmie very much but I can also see how Kimmie effects her life and not always for the best. Madison will stick up for her sister if anyone says and unkind word about her. Sorry Madison I didn’t ask you if it was ok to post what you had written but I thought people needed to see how you feel.
I went to the dr. last Friday. We discussed all the different options as to what would be best way to go about me having surgery. As of now she is going to go in and remove the cysts on my ovaries. She will look and see if I have endometriosis. The symptoms that I have make her feel that is what I have as well. If that’s the case then they will burn it out if it’s not too much. She said they might also than remove the ovaries at a later date. She said they couldn’t do it in the same surgery. Since my sister had had the same thing I am at a higher risk for having it like 60igher rate. The surgery will be an outpatient. She said maybe a day or two to be back to myself. All I know is anything has t be better than the pain I am having now. My surgery will be next week. I will let you know how things go. I hope to be back on my feet quick. On Friday the 13 – Sat. the 14 I am going to walk in the Race for the Cure. I plan on walking for some very special children that have come into my life either through Macs or Hugs and Hope. I also plan on walking for a friend of mine that just found out she has breast cancer. She was just told yesterday. She has three children. We first meet at church than she lived across the street from us. If you could please say a prayer for Marsha I know she could use all she can get. She has to go through chemo as well as radiation, and surgery too. She has a long road ahead of her. She did ask me to tell everyone that they should never miss an exam. That you are never to young to get breast cancer. I would also like you to say a prayer for little Kharisma. She is having a hard week. She is going to be in the hospital for a little while longer. Her counts are coming up but now she may have something that she can’t fight off with low blood counts. One last thing please stop by www.hugandhope.com and enter the raffle. The money raised is to help pay for two kids that have very high medical bills. Lets see if we can raise at least $300.00 for each kid. They have all ready raised around $168.00 (I think). If you win the raffle you get a nice summer picnic basket and a lot of other goodies to go with it. Thanks for your help.

Love to all,
Mary proud mom to Madison and Kimberley

Tuesday, May 27, 2003 10:54 AM CDT

Hello all,
RAIN, RAIN GO AWAY!!!!
Sorry I have not updated sooner. It’s been one thing after another around here. I have been busy taking down wallpaper in my kitchen so we can paint before we put in the new floor. I have high walls in some parts so that’s been lots of fun since I hate heights. I was just about done and I cut my finger on the putty knife. Yes I said putty knife. Leave it to me to cut myself on something dull. It bleed for over an hour and a half. I almost went to the hospital for stitches. It still hurts like crazy bit I will be ok. I have an appt. this Friday to go see the OB/GYN to set up a date for my surgery. I am just hoping that she will take it all out when she does it. I just don’t want to have more than one surgery. Kimmie needs her mommy to cuddle her.
Kimmie has been doing better on the higher meds. She is also doing better on the new medicine for her attitude. We are not getting our hair pulled out as much as we used too. She is not fighting us as much as she used too. It sure makes your back feel better not to have to fight just to carry her at times. Kimmie has been fighting off a cold over the weekend. She slept a lot more. She missed school on Friday; she had not slept well Thursday night. She took a long nap on Friday. She has been eating like a horse the last few days. I am not sure if it’s the new med. or not. She will eat two dinners some nights and than want something to eat before going to bed. She has been doing well in school too. She likes to stand in the stander they have. They say she does better in that than a gait trainer. I guess we should look into getting one for her. It’s good for her hips stand up. She has a follow up appt. in June with Dr. Sandoval. Kimmie will be getting her new Afo’s this week. Thank you Aunt Anna for getting them for her. She needed news ones bad her other s are getting tight.
Madison is doing well. Her knee still hurts from time to time. I still can’t find a brace that will fit her skinny legs. She seems to be growing up and up but not out. Everyone that sees her says she is getting taller and taller. They say she should be a model with her long legs. I can’t find pants that are long enough for her height but small enough for her waist. I was looking at her the other day and thinking how pretty she is getting. It’s hard to believe that my baby will soon be 12 years old. She says all she wants for her birthday is a dog. Madison has been helping with special needs soccer team as a buddy. They seem to really like her. She is full of energy. They have not been able to play much with all this rain we have been having.
Before I go I wanted to ask you all to do something for me. First please stop by Hugs and Hope and enter the raffle. The money they make from the raffle is going to two very sick little children on the site that needs the money very bad. It only cost a few dollars to get a ticket. Also stop by MACS and read about the kids there. Theses two sites have been great to us over the past few years. The girls love the cards and gifts they have gotten. I love the support that I have gotten as well. One last thing please stop by little Kharisma web page and sign her guest book. She is a little girl that has cancer. She had a BMT and is slowly getting her counts back up. Her mom lost one child to the disease that’s taken hold of this little girl. She could use a lot of prayers at this time. http://www.caringbridge.org/ca/kharisma/
Here is Kimmie’s smile guilt that was made for her. It is bright just like her. http://smilequilt.com/kimberley.html Well that’s about it for now.

Love to all,
Mary

Saturday, May 10, 2003 6:53 PM CDT

HAPPY MOTHER’S DAY!!!!

I wanted to wish two very special mothers in my life a Happy Mother’s day. First to my mother (Janet). I want to thank you for all you have done for me over the years. You have been such a great mom and have loved me even when I thought I knew it all and you knew nothing about life. I wanted to thank you for all little things you did for me. You held my head when I was sick. You worked hard so we could have a nice home to live in. You gave to us before you got yourself something (see where I get it from). Thanks for setting up at night when I was so sick. Thank you for making my favorite food at Christmas even if it did mean extra work for you. You told me to stand up for what I believed in no matter what others may think. You showed us that everyone no matter who they are needs to be given a chance to have a friend. You showed me that I could do anything I want to do and to hold my head high. Thank you mom for all your love and support over the years. I love you very much.
I also want to wish my other mom a Happy Mother’s Day. Tony’s mom, Betty. I want to thank you for giving your son to me. I wanted you to know that you raised a wonderful son. I wanted to thank you for you have done for me over the years. You welcomed Madison and myself into your home and as a part of your family. You gave me one of the greatest gifts I have ever received, that being your son. You have given us so much over the years. You have dropped everything at the drop of a hat to come when we have needed you. Your love for the girls is shown in the little things that you do. I am proud to be able to call you mom.
While I am thanking people I had better thank two very special young ladies in my life. They are my daughters. First to Madison, you were my first-born. When you came into my life I never thought life could get any better than that. You were the light of my life. All I have ever wanted for you was for you to be happy and know how much you mean to me. I know you may think I am a mean mom at times. I know that when you are a mom you will be able to look back and see how much I do love you. You have been such a great joy in my life. I am very PROUD to say that I am your mom. I have watched you go from a tiny baby who needed everything done for her to a beautiful young lady who is spreading her wings and dose not need mom so much as you used to. No matter how big you get you will always be my baby. I want to also thank Kimmie. You have changed my life in ways I never thought possible. You have made me slow down and see the little things in life. You make the world see so simple, if only Barney and Strawberry milk were all it takes to make everyone happy. You will never know how much you are loved and how you have changed the lives of so many people. You are the wind beneath my wings. You may never say I love you to me but when I see that smile I know that you do. My hopes and dreams for you have changed over the years but one will never change and that is for you to always be happy.
No mother could be more proud of her children that I am of mine. I thank God every day for the wonderful children that he gave to me.
Update:
Kimmie is doing better on the new meds. She had a few seizures this week but nothing to bad. Madison has to go for physical therapy for her knees. We have to go back to Dr. Reing’s if they don’t get better. Will write more of an update later.


Happy Mother’s day to all!!!

Love to all,
Mary

Monday, May 5, 2003 8:36 PM CDT

Hello all,

O.K. O.K. I know you want to know about Kimmie. It’s been a little better week. Tony made it home safely. When he got home he went to put Kimmie in bed. He talked her as he picked her up off the couch (she was asleep). When she saw who had her, her little legs went a flying. She was so happy to see him. You would have thought she had just been given a million dollars. She loves her daddy so much. I thought for sure when I saw them that I was going to be up all night. Thank Goodness she went back to sleep. I forgot to tell you what Tony gave me for our Anniversary. He gave me the most beautiful three stone diamond ring. He handed it to Kimmie to give to me. She tossed it back at him. It was in a gift bag (Kimmie hates to open gifts). Madison says it’s pretty but she keeps bumping into my left hand. She says it’s a mean ring. Lol
Now back to Kimmie. First of all for the blood work. It was all fine. I was happy to hear this, but at the same time you kind of wish they would have found something wrong. I mean it would have explained why she has been acting so different. Dr. Sandoval now does not want her to have the video EEG done. She said she saw what she needed to see when Kimmie had the seizure in her office. Kimmie has been doing a little better on the higher dose of meds. She was fitted for her new Afo’s this past week. When I was putting her into the car to go I told her we were going to see Mike so she could get her new braces. She said “not me, not me, not me”. We gave her some medicine so she would sleep while getting fitted. She hates anyone to touch her feet. We wanted to have a good casting so the braces will fit and hold her foot in a good range. Mike (the brace guy) did both feet than he redid the right foot. He was not happy with the way that it looked. It will be another week or so until we go back to get them.
Kimmie did have a long seizure on Sunday morning. It lasted over 5 minutes. She was not really herself in the afternoon. She has been sleeping late this past week. It is not like Kimmie to sleep past 7:00am. I just hope it’s the medicine that is making her sleepy. She did have another seizure today. I am getting a little worried that the “honeymoon” period is over. It seems that the meds. Work for a while than they seem to not work as well. I will let you know how the week goes. At school last week she got a bump on her head. Her teacher Miss Kathy is so upset about it. They don’t know how or when it happened. They were changing her diaper and when they lifted her up they saw blood on the changing table. They checked her over and saw it was coming from her head. She had a small cut on a bump. The nurse but some stuff on it which Kimmie didn’t like. When she got home from school the bump was gone, but you could see where it had bleed. Miss Kristin one of her aides called that night to check on her. This is the aide that I like to joke with and tell her it’s her fault. Kristin is the aide that was with Kimmie when she fractured the top of her foot on her wheelchair. They seem to love Kimmie so much. I am glad Kimmie has a few more years in their class.
Now on to Madison. Her knee still hurts. She is going t see Dr. Reing this week. Dr. Reing is the orthopedic surgeon. He is the dr. that has done a few of Kimmie’s surgeries. I have not been able to find a brace for her knee. She has such small legs. I hope and pray she will not need surgery. I plan on calling the dr. for myself as soon as we get back from her appt. I can see some of my friend’s eyes rolling now. I promise I will take care of myself too. You know me the kids come first, but I am getting tired of not feeling well.
As for my last update. I am sorry if I hurt anyone’s feeling. I guess I just wanted people to see the other side of me. I don’t let much get to me but some times I just can’t stand to hear those words. I feel as if I am a strong person, but some times its not easy being Kimmie’s mom. I love her more than life itself. Kimmie and Madison are the stars that shine and the rain that falls. I know this has been a long update and I am sorry. I do want to share a poem with you. It means a lot to me.

The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly,' smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that felling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by My side."
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."

I hope you like it as much as I do. Will let you know more about Kimmie and Madison later.

Love to all,
Mary

Friday, April 25, 2003 8:07 PM CDT

Hi all,

I wish I had better news for everyone. Kimmie has been having more seizures again. I had to take her back to the Dr. Sandoval. She changed the setting on the VNS. It is now set to go off every three minutes not every five. She also upped her medicine again. Kimmie did have a seizure in her office so she got to see how she turns so pale during them. She said she was not sure what we can do about it at this point. That scares me to think that they can’t do anything for a child that turns pale and lips turn blue when having a seizure. The dr. order some blood work to see if anything could be wrong that way. Well it took 4 sticks to get the 4 tubes they needed for all the lab work. At one point they had the vain but than it started to bleed out around the needle and into her arm. They took the needle out and started to push the blood out into the tube that way. The first stick Kimmie opened her mouth wide and yelled OUCH. I guess she does know what ouch means. How am I to just set and watch my child go through all this? I feel like my life is just going to end at times. This is my baby and some day it feels as if she is just slipping away from us. She has a few (2) seizures last night in the middle of the night. They didn‘t last long but were intense. She had long and very intense one at school today. Poor Marie, it scared her bad. She said that it looked like she was trying to box with her arms. She was shaking bad and her eyes were rolling back in her head. She gave everyone in the office quite a scare as well. She was in the office at the time taken the attendance records down. Marie said it made her arms hurt trying to hold onto Kimmie, she had taken her out of her chair. Thank you Marie for caring about Kimmie and her needs. I can say enough how much the school staff means to me. They take such great care of Kimmie. She had a few more seizures the rest of the day at school. They sad that one side of her face was pale the other was red and her noise was red. Kimmie likes to keep everyone on their toes. I called the dr. back and she said to up her meds again. I hope this will help and not make her moods any worse. I worry if she is like this now how will she be, as she gets older and stronger. I feel at times as if “God” is getting back at me through her. I know that I have not always done what he would wants me to do and this is his way of showing me what I did wrong. I know deep down this is not true but sometime I can’t see past the pain. I feel so bad for her. I try to do any and everything for her but I feel like all I do is run into a brick wall over and over. When people tell me they know how I feel I could just scream. Unless you are Tony or myself you have no idea what it’s like to see your child first be a healthy baby and than have that baby ripped out from under you and given a baby that looks just like the one you had. Our life has been turn upside down with Kimmie. We have watched her as she fought just to stay alive and if we didn’t sing Barney to her, her heart rate would drop to almost nothing. We have set and waited to see if our child would live the night. We have held her all night when she was in so much pain form a surgery. We watch her have seizure after seizure and had to wonder if this will be the one that takes our daughter away from us. I am glad that so many people love Kimmie and I am very thankful for that. I guess I just feel down today. It’s been a long week. Tony was out of town again and Kimmie “showing” off. I did get a nice surprise this week while Tony was away. I got a large gift basket from his boss and the rest of the guys Tony works for. They are so great to us. Madison robbed me of my Kiwi. She just loves them. She had to go to the dr. today. It seems that her kneecaps are very lose. The dr. said they float too much and make it feel like the bones are rubbing together. She now has to wear a brace with doing anything to keep the kneecaps in place. This is going to be a hard thing to find to fit her. Her leg is so small that the ones in the stores will just fall right off her leg. Kimmie just had another large and seizures so I had better end it for now. I will let you know about the blood work and how she does on the higher dose of meds.

Love to all,
Mary

Monday, April 14, 2003 2:38 PM CDT

Hi All,
First things first HAPPY 10th ANNIVERSARY ( on the 17th) Tony!! I Love You!!!
I want to say sorry I have not updated sooner. It’s been a little crazy around here. We had to take Kimmie off the Ativan that the Dr. had just put her on for her seizures. We first had to cut back the amount as it made her to sleepy. She went out like a rock and slept most of the day. Will the sleeping part was not the bad part it was the way it made her act that was not so good. She was mean as snake. She was like a wild animal in a cage. You didn’t even have to be in the same room as her and she would just go off. She is now off that medicine. We upped her Topamax and she seems to be doing better now. She is still moody but not as bad. I have a nice burse on my arm where she took a taste of me while she was on the other meds. She was acting out in class. She wanted to pinch the teachers and kids in the class. We could not have her acting this way.
Her Aunt Anna is going to buy her the new Afo’s for her feet. Wow, Anna you are so great. I don’t know how to thank you enough. The school was able to fix the ones that she tasted. They are so good at school when it comes to Kimmie. She was doing hand prints (painting) in class and she didn’t want to do it so the aide got to wear purple paint up her arm and on her shirt. I was not to see the painting yet (it’s a mother’s day gift) but, they wanted to see if I could guess which one was Kimmie’s. They are off from school this week for Spring break. She has been yelling Nanny all morning. I may need an Advil soon. :)
Madison is doing great. She came up with the idea of making yellow bows and giving them out to support our troops. We went yesterday to Giant and handed them out. She made $168.50 for them. The Young Marines are going to send care packages over to the troops. We have a few friends as well as a few of the people that work with the Young Marines over there. I was very proud of her to think of others and not just herself.
Now back to Kimmie. We are still waiting to hear about her going into the hospital. I did call the hospital that the dr. wanted her to go to and got their info. for the insurance company. Well when I called the insurance company the dr. that would see her and the hospital are not in plan. So we are now back to the start. I called the dr. office back and they are going to try a different hospital. I will let you know more when we know what’s going on.

Take care and God Bless,
Mary

Thursday, April 3, 2003 3:21 PM CST

Hi All,

Well it seems everyone is asking about how Kimmie is doing, so I guess I had better let you all know. It seems Kimmie thinks mommy and daddy don’t have enough to do. She is still having a lot of seizures. She has been having bigger ones than she has had in a long time. She had two very involved ones on Wednesday at school. One lasted around 3 minutes and the other one lasted about 5 minutes. The school will call the squad if they go over 5 minutes. Thank goodness she came out of it when she did. They said they have not seen her have such big seizures there. They were just a little shook up when I went to get her. She has the best teachers and aides we could ask for. They are so good to her. They take such great care of her. They even share their food with her. Kimmie likes to eat. Thank you guys for loving her so much you are great!!!! I called Dr. Sandoval again on Wednesday to see what she thought we should do for her. She added a new medicine to the one she is taking. We had all ready upped the one she is on. They said the new medicine might make her sleepy. She got to stay home with mommy today. I want to keep an eye on her and see how she would do it. Well she did take a nap but she was lying in the sun. She always goes to sleep in the sun. It’s a great day outside, sunny and 82 degrees. I had to turn on the A/C the pollen is getting high and it drives me nuts. I cough my head off, just ask Tony. Kimmie seems to be doing ok so far today. She did have 2 small seizures (minute), but the magnet stopped them. She got to stay with pop pop Wednesday night while I took Madison to Young Marines. She was not happy when he left…She came over to the bottom of the steps and yelled “pppphhhh”. I asked her what she wanted she just growled. I than had to ask if she wanted pop pop. She gave me that big smile and said “pppphhhh”. I told her he went home and she said “NO”. She didn’t want her mommy she wanted her pop pop. I am so glad that she loves him so much, and that he loves her so much. I called to check on her while I was gone and he said they had been cuddling on the couch. Tony has been out of town since Sunday morning. As I am writing this he is on a train back home. I can’t wait to see him again. I miss him so much when he is out of town. We still do not have a set date for Kimmie to go into the hospital for the tests they want run. They are trying to get her in as soon as they can. She has been a mess this week. She took her AFO’s (braces for her feet) off the couch and chewed on them. She can’t wear them now; she chewed the heel almost flat. I guess she didn’t like them. She needs new ones anyway. Our insurance does not think they need to cover them. So we get to pay for them out of pocket. They cost around $1500.00 if we are lucky. The insurance company said they would cover surgery, but not braces. I just don’t understand their thinking sometimes. Well I had better go and see what I am going to fix for dinner, and clean the house up a little. Thank you all for caring about Kimmie and Madison. If it was not for some of my dear friends and they know who they are I would not be able to see past all the bad to find the good. Thanks Sharon and Jan (aka mom # 2). Please pray for our troops.

Take care and God Bless,
Mary

Monday, March 24, 2003 1:34 PM CST

Hi all,
I just wanted to let everyone know for Kimmie is doing. She went to the cardiologist last Wednesday to see if it was her heart that was making her turn pale and her lips to turn blue. Kimmie was not happy to be there at all. She had her little temper tantrums. She fought the EKG and would not let them see what her oxygen levels were. She yelled while Dr. Hepner was listening to her heart. I told him I was sorry about that she was not acting nice. He laughed and said that was just Kimmie that she was full of spunk. I told Kimmie that the dr. said she was full of spunk, she looked up at him and gave him her cute little half grin and said “yah”. He said see she is full of spunk. I could not help but laugh at that one. She is full of something not sure if its spunk or not. Dr. Hepner did not feel that the problem was her heart. I was happy to hear that, but also worried too. He seems to think its more neurology than cardiac. He did say that over time the seizures could cause more heart damage. He said unless things change he would see her in a year.
She was very moody over the weekend. She did get happy when Maw Maw and Pop Pop came over to see her on Sunday. She loves them very much. She hopped up and down like a little frog. She was all smiles to see them. She snuggled with Maw Maw and than had to pull her hair. Maw Maw and Pop Pop are Tony’s mom and dad for those of you who may not know. I just don’t know what I would do with out them. They watch the girls when we need to go out. Dad comes over last minute to get them off the bus. There are not enough words to thank them for all that they do for us. Tony and I are truly blessed to have them. Later that day Aunt Anna came by to see us. Kimmie was happy to see her as well. She gave her a big smile. Kimmie had fun throwing toys at her. Thank you again Aunt Anna for the new stroller. Kimmie will be able to use it for a long time. Her teacher said she is riding in high style. After everyone left Kimmie went back to being a grump. She didn’t want to her dinner, but later when the rest of us were eating she ate some of ours. She didn’t want to go to sleep. She would bang her head with her hand and have a little fit. She finally fell asleep around midnight. She had a grand mal seizure around 3:30. She rolled her eyes back in her head and shook all over. Her tongue went in and out, she mooned during it as well. It lasted around 4 minutes. I was about to wake up Tony, when she stopped. I took her upstairs and cuddled her for an hour. I don’t normally get worry when she has a seizure, but this one was different. She has not had one this bad in a long time.
I sent her to school on Monday. She was a little pale but was happy when I asked her if she wanted to go to school. Well Marie (one of the aides in her class) called around 9:30 and said Kimmie had a 2-3 minute seizure. She said she would call me back if she had anymore. Well I got another call about 10:00 saying she had another one. This one was like the one in the middle of the night. I went to pick her up. She was lying under a blanket on the floor. She looks pale and has dark circles under her eyes. She is now lying down with a cup of strawberry milk and watching Barney. We have not heard, as of yet when she will be going into the hospital. We will let you know when we have a date. After she is out of the hospital it will be my turn to go in. I have to have surgery. I have cysts on both of my ovaries. They will first go in and look and see if they can just remove them or if they have to take the ovary as well. I will just be happy to be out of pain. I am to be back to my nice self not meaning because I hurt. I have to go get Kimmie some of her loved cheese curls. Please keep Kimmie in your prayers. Also please keep our soldiers in your prayers as well. We have friends over there. Some of which are Madison’s drill instructors from Young Marines.

Take care and God Bless,
Mary

Tuesday, March 18, 2003 8:20 AM CST

Hi all,

I wanted to let everyone know that Kimmie will be going into the hospital in the near future. She had not really been herself since Christmas time. She has been turning very pale and seems to be lethargic. Her lips will turn blue as well. She still has seizures and will also turn pale durning them. We are a little scared as to what is going on now. We will let you know as soon as we know what is going on. She still loves school and her teachers. She loves Barney as much as always. Thank to all of you who care so much about our little Miss Bimmer. Please feel free to check back and see how Kimmie as well as the rest of the family are doing!!!

Take care and God Bless,
Mary

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