Saturday, January 30, 2010

Saturday January 30, 2010

Today wasn't as good of a day for Ashley. She didn't sleep well last night, and was extremely tired when she woke. But that wasn't the main problem. She told me she felt sick, all over her whole body. She wasn't able to eat, (not even the steak!). She was emotional. Every little thing set her off. She was watching the Hannah Montana Movie, and the song Butterfly Kisses came on, and she started sobbing. She told me that song is one that she loves and if it was appropriate, it would be one she would choose for her funeral. Well, of course, that set me off and we both sat crying together. I held her for a long time. She then started apologizing for crying and for making me cry. Oh my goodness my little angel girl is so selfless! Here she was, feeling so ill, and she was still worrying about her mom being sad. I never cease to be amazed by her selfless and charitable heart.

She was finally able to eat a little bit, but only a couple of bites. Her pain was intense enough I gave her hydrocodone and ativan. I sat by her until she was able to rest a bit. She wanted me to stay close all day long. And I did as best as I could. Happily so.

We finally broke down and let my parents come this evening. Ashley was the one who said it was alright if they came, but only if I promised NOT to leave her. They will stay until Monday morning. I am very thankful they are here. I didn't think it would help me relax to have them near, but I was dead wrong. I feel very peaceful knowing we have them. They can't spell me off with Ashley. But they can help with dishes and the boys and such. Tonight they sat down with the boys and played games with them. They kept them entertained while Jason finished up some loose ends from work, and while I sat by my girl. She needed lots of close mommy time, and it was nice to be able to completely focus on her needs.

She started into another episode right after scripture and prayer time. She was very upset when she called me to come sit with her. She needed to be held and comforted. My wonderful man took over. He prepared the air mattress for my parents and helped the boys into bed. I thank Heavenly Father every day for Jason. He is such a good man, and he helps me every chance he gets. I don't have to ask. He is ever watchful and knows what to do. I have said it before, and I will keep saying it, we are a "winning" team! Ha ha ha ha ha! (0: Ok, that was cheesy, but man, it is so true. What a blessing it is to have married such a honorable person who is generous, giving, helpful, and a great teammate! (0:

I have no idea what to expect over the next few days. But I am so grateful for every day. I am grateful for every hug and every touch and every smile I get to share with my angel. What a blessing! What a miracle she is able to be here still, and be comfortable. I know Heavenly Father is watching over our little family.

Friday, January 29, 2010

Friday January 29, 2010

I am really sorry for the lack of update last night. Ashley wasn't feeling very good, and so I didn't want to take the time to blog.

Yesterday was a hard day for Ashley. She didn't feel as good, and she was very emotional. The arrythmias are starting to come more frequently, and as one would expect, they make her feel yucky. Her stomach was not as good, and she had a terrible time with diarrhea. That was her main problem last night. She went and went and went. It was awful!

Right now, Ashley craves meat. I am not kidding. Her favorite thing is steak. She eats steak several times a day. The portions are really small, but she will eat, and has been eating, up to six little portions a day. We have a good system. If she takes immodium before she eats, she can eat the food and keep it in her system for most of an hour. Then of course, the diarrhea comes. Sometimes she will go longer before she has to run to the bathroom. Last night was worse. She wanted some chicken strips from Dairy Queen. Her wonderful dad, bless his heart, went out and got her some. She was able to eat quite a bit of the chicken, but then the diarrhea hit her with a vengence. It was after 12:30 before her body was able to calm down. She slept most of the night, and didn't wake me up until 6:00. That was a blessing! I was worried she would be up several times. Thank goodness she wasn't. We have had a couple bad nights in a row where she is up four times plus. We neither one are able to rest, and it gets exhausting. I don't do as well when I don't get enough sleep. Neither does my angel.

We actually had a really nice afternoon yesterday. Ashley came out into the living room for a little while, and fell asleep on the couch. I decided to let everything go and take a nap while she rested. Rather that fall asleep in the bedroom, where she might not be able to wake me up for help, I made a bed on the floor and slept by her for most of an hour. It was very refreshing! When she woke, I helped her back into the bedroom and we watched the Bachelor on the internet together. I sat and held her hand and stroked her arm. It was a very special, relaxing time for us.

Today wasn't as relaxing as yesterday. Ashley had more episodes of irregular heart beats. She had one this morning, and then another tonight. It was scary! Even with the extra worry, we still had some wonderful time together. She wanted to take a bath this morning. After she baths, she is always exhausted! Nancy arrived as I was helping her out to the living room. Ashley requested being in the living room after her bath, even if she was tired. I was happy to comply. I opened up the blinds and let in the sunshine. I don't think there is anything more inspiring than sitting in a bright, warm, sun filled room. I do think it helped Ashley's mood. It definitely helped mine.

Tonight, Ashley has been really tired. She wasn't able to eat, (not even steak!) When her episode started, it was around 8:30, so I gave her hydrocodone and ativan and we waited. Within a short time, she started to calm down, but she was tired for the rest of the evening. My sister did come over for a little while to bring over some cookies. Ashley was able to visit with them, although after they left, she got upset because she felt so yucky. Visitors are still hard to handle. Excitement of any kind brings on the arrythmias. We have to be super careful about upsetting Ashley.

So into another weekend we go. I pray it will be a good one!!

Wednesday, January 27, 2010

Wednesday January 27, 2010

I can't believe January is almost over! It seems like yesterday it was Christmas. I sat today and thought over the past month. What an incredible journey we have been on. I didn't think I would be writing a blog entry today, stating that my angel was still here. I really thought we would lose her before Christmas. Then I thought we would lose her before New Years. I never thought she would be here still. I am so grateful we have been given this time with her. I treasure every second. I never know, from one moment to another, how long she will be permitted to tarry on this earth. But I am so grateful for her comfort over the past week. She has been blessed in numerous ways!

Last night wasn't so good for Ashley. Shortly before bedtime, she was having a terrible time breathing. The shortness of breath has worsened. I knew it had, but last night, she was visibly retracting. She was upset enough, I didn't want to take the time to write in the blog. I gave her extra lasix, and her other medications, and sat with her, rubbing her arm and helping her to stay relaxed. I didn't know what the night would look like. Fortunately, it wasn't as bad as I thought it would be. She was up four times in the night, but not more, and she remained comfortable throughout the night. By comfortable, I mean her breathing was ok. No chest pains, although her heart was beating furiously.

This morning, while her brothers were getting ready for school, she had another big arrythmia. She was in terrible pain. She said with every breath she took, she was in horrible pain. I gave her pain medication and ativan, and I prayed. Within a short time, her pain subsided. In fact, she felt good enough, she asked for food and was able to eat. I started breathing again. Over the course of the day, she has remained very tired. She has also been emotional. But I don't blame her. I think she feels her body taking another step down. I feel it. My mom heart is telling me that time is running out.

Ashley's fear today is that she will die while her brothers are at home. This morning, after they left, and her episode subsided, she cried for a very long time. She told me she knew her brothers were already stressed. She didn't want to add to that, and was worried if her heart did stop when they were home, they would be marked forever. She said, "Mom, I love my brothers. I don't want to upset them. I am so scared if I died in front of them, they won't be okay. I don't want that. I want to go when they won't have to watch me die."

She has been upset about that all day long. She has been upset that we won't be okay. How can you tell your child you love with every fiber of your being, that you will be okay when they die? Of course we won't be okay for a time. We have to grieve. I already am, in so many ways!! We all are. It hurts like heck and she is still here!! Her dad was so upset today, after her episode, he was sick to his stomach and had to come home from work. Austin is not feeling well tonight. We will grieve Ashley's loss for the rest of our lives. But that doesn't mean we won't survive. I look at all the wonderful people in this world who have experienced loss in one form or another, and who still go on with their lives. I have a special aunt who had to part with her dearly loved husband. My uncle died the day before I was crowned Miss Mini-Cassia. The day of the pageant, I was so sad. My Uncle Rulon was my hero. He was sick for a good portion of his life, and he never complained. He was so valiant and strong and enduring. I didn't know how I was going to compete with the heaviness in my heart. I had a special blessing from my dad. That night, on the way to the auditorium, I was in the car, driving, and I literally felt my uncle with me. I felt his arms around me, and I heard him tell me that I was going to be great. He would be watching over me. I will never forget that special moment. I know my uncle has watched over his family over the years. My aunt has been so strong!! I can't imagine how she kept going, but she did and she smiles and she lives life to the fullest. I want to be like her. I want to keep smiling and laughing and living and loving. Jason and I have three amazing boys. They are so good and handsome and smart. (Yes, I can say that! Mom bragging rights. Ha ha ha!) I want to raise them to be fine stripling warriors. I want to help them have the desire to return to their Father in Heaven, to some day have their own forever families. It is going to be so tough!! But with the help of so many wonderful family and friends, I know we will make it.

I want to thank several inspiring individuals who have shared their special experiences with me. One of these fine women has four beautiful daughters. I have always looked up to her. I had no idea what she had been through over the course of her lifetime. But she is truly a pillar of strength. She lost her mom while she was very young. She has continued on with such faith and courage. And another special lady who lost her baby not long ago. There is such a wonderful spirit of peace in their family. I feel it every time I talk to her. She has kept moving forward, even when the pain was so consuming!! What astonishing women of faith!! Thank you to all who set such amazing examples to me!! You all inspire me to be so much better! You inspire me to be closer to Heavenly Father, and to keep moving forward through each agonizing day. I love you!!

Monday, January 25, 2010

Monday January 25, 2010

Just a quick update. Thanks for not thinking I am crazy! Ha ha ha! I appreciate all the comments I have received on my previous blog. It helped to vent. Jason has been super attentive and helpful tonight. I can't say enough good things about my dear husband. He spoils me rotten. He treats me like the Queen of Sheeba. I hope I do the same for him. He certainly deserves to be treated like the King he is! (0: Just to brag on him, (I know he hates this), but tonight he helped clean up dinner. Then he helped cycle kids through the bathtub. He played backgammon with both Preston and Austin. He went grocery shopping, and even picked up a treat for the kids. It was awesome! (0: He is awesome!! (0:

Ashley has been hanging in. Her appetite was good. She wanted to eat several different things. I won't say she ever eats a lot, but at least she wants to and she tries. She did have a short episode of arrythmias right as I was getting the boys into bed. Thankfully, it didn't last long and the pain subsided quickly. My heart always skips a beat when she tells me her heart hurts and it starts beating wildly! But she is alright now. Tired, but alright.

I just wanted to tell everyone one more time, how grateful I am for this trial. I am grateful for every hour of struggle, for every moment of fear and sorrow, no matter how overwhelming it is for me. I am humbled to the dust! It wasn't long ago that I had some problems in my personal life. I took so many things for granted, including my husband. Jason and I weren't as committed to the gospel as we should have been, and our family suffered because of it. Through this experience, we have both come to realize just how much we have to be thankful for. We have gained tremendous faith. Our testimonies have grown beyond belief. Our family is so close. Our extended family is so close. I know this trial was what we needed to help us move in the right direction once again, to grab hold of the iron rod and fight tooth and nail to get our family to the tree of life. Satan has worked so hard on us! I know he is working hard still. And I know we will beat him down!!!

Monday January 25, 2010

Sorry for the lack of post last night. I didn't feel good. Ashley didn't feel good. So we watched a movie and went to bed. I was thankful to get to bed before midnight. Ashley was only up three times after that, so the night was alright. I didn't wake up feeling tired. She is very tired and weak today, more so than she has been over the past few days. Surprisingly, her appetite is fair. She tried to eat two different things for breakfast. She didn't eat much of either thing, but every bite she takes makes me super happy.

Yesterday was another day of comfort. Her pain was under control. Her stomach was under control. The diarrhea, well, that will always be a problem. Her main problem yesterday was the weakness and fatigue. That isn't new, but yesterday, she felt especially weak. She had a hard time moving her legs on the bed. I had to help her several times to change positions. I think it is a blessing her heart has been holding. She still has constant flipping. I feel her heart often and it isn't in a normal rhythm. Thankfully, the major arrythmias have stayed at bay. But we never know from one hour to the next, from one day to the next, if that will change.

We didn't get to church yesterday. Jason encouraged me to attend sacrament meeting, but I didn't feel like going. My body isn't cooperating so well with me right now. I am on edge all the time. I don't feel relaxed. I HATE that about myself. Almost as much as I hate my teeth. I have struggled with this problem my whole entire life! Dang blasted anxiety!!! I wish I could change the fact that I have terrible anxiety. Unfortunately, I can't. I have to accept it as part of myself and keep moving forward. But it SUCKS! When my anxiety flairs up, I get so sick. I can't eat. I can't sleep. My body will hurt all over. I lose weight. (That part I wouldn't mind!) My head feels unbalanced all the time right now. Man, it stinks! I know this is another challenge that will make me stronger. But I don't like it. I can't deal when I feel sick. I get so scared, mostly that I won't hold up under the pressure and I should be able to. I should! So why can't I???? AHHHHH!!! Sometimes I want to curl up in a little ball and disappear forever. I have wished that so many times over the course of my lifetime. I don't wish that now. But I do want my stupid, idiotic body to get a grip! I did call the doctor today to get more anxiety medication. I haven't been taking the whole dose. For one, I didn't want to pay for more. We don't have insurance and the medicine is really costly. Two, I can't go to the doctor right now. I am literally glued to my daughter. Thankfully, they are going to call me in another refill without seeing me. That is a blessing!

I am not the only one who is feeling the stress. Austin turned up with a bald spot on the back of his head. He has had the spot for a while now, but it is getting bigger. I was initially worried about ring worm. We dealt with ring worm four years ago and it was awful!! Jason took Austin to the doctor today and we found out the spot is caused from stress. Austin will need to see the dermatologist so we can work on getting it fixed. Poor kid! I have been so caught up in my own trauma, I haven't thought about the boys like I should have. Preston hasn't been completing his school work as well as he should be. I have seen lots of mistakes. He has been so difficult too. Spencer seems to be okay, but I have no idea how he is really holding up. Our whole home is feeling the tension. I am super concerned about our sons. I know we have a wonderful school counselor who is always available to help. I didn't think we needed counseling, but maybe we do. The boys in particular.

I know I mentioned before that fear and faith do not exist together. I know this is true. I don't mean to fear. Really, I have great faith all is going to be okay. I know Heavenly Father is watching over us. I know we have been blessed in countless ways. But it is lack of faith when my anxiety flairs up with a vengence? I hope not. I don't want to not have faith. I don't want to fear. I don't want to disappoint my Father in Heaven. I want to feel normal. I don't think I have felt like a normal person for so long, I never will.

Okay, enough with the vent. I feel better now. Now everyone will know I am psychotic. Ha ha ha! Just kidding! (0: Ashley is here for today and I couldn't be more grateful!! I love her so!! And she is as comfortable as she can be. God is watching over my angel!! And, I have Jason, who loves me no matter what, no matter how stressed out and strange and not normal I feel.

Sunday, January 24, 2010

Saturday January 23, 2010

I can't say enough good things about my wonderful husband. Today, he was my hero in every way! I could not have survived this day without him.

Ashley had a fairly good night last night. We got to be shortly after 12:30. She was only up three times to the bathroom, and only had diarrhea once. I was worried she might have trouble, where she ate right before going to sleep. But not so. She was again blessed. I have no doubt of that.

Today was another day of comfort. Ashley's pain was under control. Her stomach was under control. The diarrhea is an ever present problem. Today was no exception. However, she was able to eat quite a bit by her standards. Tonight her request was steak. I couldn't believe she was asking for that. Steak is not gentle on the digestive system. She ate four small pieces, and surprisingly, did not have a terrible fit of diarrhea afterward. That was not an accident. I know it was a blessing. I couldn't believe how good her appetite was all day long. It is so wonderful to see her eat and be able to keep the food inside her body for a little while.

Tonight she did confess that she felt her heart jumping around quite a bit over the course of the day. This afternoon I was suspicious of that. She was very tired, and as I sat by her, I could see her heart beating furiously. I know the arrythmias will happen. I was thankful none of them have been as bad as the ones last week. I know Ashley's comfort level is not an accident or luck. Heavenly Father is blessing her. I know that with every fiber of my being. I have seen His miraculous blessings showered over her. From last week, when she was so desperately ill, and I was convinced she would not live out the week, to today, with her sitting up, smiling, eating, talking........night and day difference. It isn't her time to go yet, and I can't tell you how I pleaded with my Father in Heaven, asking if she was to remain with us, that her great suffering and heavy burdens would be lifted. They have been! They have been! There is no doubt in my mind that God hears and answers our prayers. Not always like we think He will, but He hears! In the words of a great song I dearly adore:

Here I am again, down on my knees
And with every pleading word, Thy comfort I seek
Though the words are slow to come,
My thoughts are racing by
Peace fills the room, Thy spirit is nigh

He hears me
When I'm crying in the night
He hears me
When my soul longs to fight
Till the morning will come
And the light of the dawn reassures...
He hears me

What a blessing it is to know the power of prayer!!

Ok, it is late but I have to brag on my wonderful husband again. I have to explain why he was my hero today. (Ok, he is my hero EVERYDAY!!) This morning, my children were behaving like the spawn of hell. I hope no one takes offense to that statement, but they were. (Spencer was not the problem. He seldom is.) They were fighting and yelling and picking on one another until I wanted to throw them out! I know they were bored, but at that time, I couldn't do anything about it. I tried being patient and kind, not yelling, trying to referee in a way they both were appeased. It didn't work. I ended up screaming at them. Then I felt awful. I know they are dealing with this situation in their own way. We have tried to be extra patient and understanding with them. I wasn't very patient and kind today.

Poor Ashley heard the commotion going on and she got upset. When she gets upset, she starts having arrythmias, which she did. Her chest was hurting. She was in the bedroom crying, upset, and I couldn't go to her because the boys were having a brawl on the bedroom floor. One of them took a hit to the groin and was screaming in agony. I was trying to figure out what really happened, and why the one hit the other, and trying to calm Ashley down. I couldn't get the two boys apart. Austin wanted to get Preston for hurting him. Preston was screaming at Austin. They wouldn't even acknowledge me. I finally called Jason, in desperation. Bless the wonderful staff at Idaho Watersports! They let him come home. The minute he walked in the door, those boys were like straight arrows. They stayed in time out. (For me, they sneak out of their rooms. They stretch their legs out into the hall, they yell horrible things to one another.) They immediately made peace with one another. Jason sent me into the bedroom with Ashley, and he took over. He built them a huge fort across the whole living room. He helped fix lunch, and then he went outside and played basketball with them. He spent the whole afternoon fussing over our boys. I was able to calm Ashley down and attend to her needs. We rested. I was so refreshed after the break. I was able to come out and be nice. I couldn't have survived without Jason! He is such a good man! For those of you who know me well, I tend to freak out easily. I am extremely reactive. Jason is not like that. He is always so calm. When he is in the house, the entire atmosphere changes. Like I said before, we make a great team. We have to be a team. I can't do it all. I would fall apart. I thank my Heavenly Father EVERY DAY that He gave me Jason, who completes me in every way. He keeps me grounded. He keeps me calm. What a blessing!

Friday, January 22, 2010

Friday January 22, 2010

Do you ever feel like you are in the middle of a terrible storm? Several years ago, that happened to my family. We were on the way home from Utah and had just passed Tremonton, when we got into a terrible snow storm. The wind was howling and the snow falling quickly. Before we knew it, we found ourselves in white-out conditions. We couldn't stop for fear someone would not see us and hit us. We had no choice but keep moving forward. My dad was driving at the time, and I remember having complete faith in him as he guided us through the storm. It was so frightening, not being able to see. But our prayers were heard that night. We were able to get through the storm, to safety. I know we were blessed.

In a way, that is how I feel now. I feel like we are in the middle of a terrible storm. We can't see. We can't stop on the road. We have no choice but to keep moving forward, constant prayers carried in our hearts. We have to trust in someone who can see, who knows the path and with faith, will guide us to safety and peace.

Today was a day of peace. This morning, everything seemed to be in balance. Ashley was comfortable. I won't say she wasn't miserable, but her pain was under control. Her stomach was not hurting. She was able to go three hours without diarrhea, which was a huge blessing. She was able to nibble on a little food. Her face looked less swollen and her color was alright. When Nancy came, she thought Ashley looked comfortable too. At this point, that is our goal, comfort. I always rejoice inside when Ashley has those choice moments where she isn't suffering. The hard part is, we never know when those moments will go away. She may be having a comfortable day, but in a matter of minutes, could go the other way. She could have another major arrythmia, and be in agony, or be taken from the earth. There is no textbook for my angel. There never has been, and sometimes, that drives me bonkers!! But at the same time, this whole experience is part of something greater. Our wonderful Father in Heaven has always had a plan for Ashley. He knows what we don't. I have great faith, if we trust in Him, we can move from one agonizing day to another, and not fear what may happen in that day.

Tonight, Ashley remained comfortable. I made homemade chicken and noodles for her, at her request, and she ate two bowls. Unfortunately, the stupid PLE kicked in with a vengence, and she ended up having diarrhea afterwards. At this point, we know it will happen and we deal with it. She told me she would rather eat what she wants, and deal with the diarrhea, than to avoid the food altogether. Thankfully, the nausea has been at bay for a couple of days now. I pray that stays away. There is nothing more agonizing that feeling sick to your stomach.

What the next few days will bring, I have no idea. Nancy and I talked today about Ashley's pain medications, and what I should do should she go into another awful arrythmia. At this point, again our goal is comfort. We discussed using a little morphine, in addition to the hydrocodone and ativan. I haven't used morphine for a while now. The hydrocodone is working well, and Ashley prefers it. Nancy said if I have given her the highest dose of hydrocodone, and Ashley is in an arrythmia, and in pain, I can give her a little morphine to help ease her discomfort. It is a little scary for me to think about those arrythmias. They are frightening in every way! But we have to be prepared. I can always call Nancy, should something like that come up, but I need to be prepared to give Ashley more medication than would normally be necessary. I need to be prepared, should Ashley decline enough she is in a semi-comatose state, and we have to control her pain. It was a hard discussion. I hope we don't have to face Ashley like that. But it isn't up to me. Faith! Faith! Faith! That is what is it going to take to keep moving forward! (0:

Thursday, January 21, 2010

Thursday January 21, 2010

Every day feels like a roller coaster. Today was no exception. Ashley woke up feeling better than she did yesterday. Her face was not as swollen. Her eyes looked a little brighter. She wanted to come out into the living room for a while, which she did. It was nice to see her be out of the bedroom. The sun was so bright today. It brightened my spirit. I don't think Ashley could help but feel the warmth in her heart too. (0:

Throughout the morning, she did well. Her nausea completely subsided, and she asked for food. The PLE , (protein losing enteropathy), attacked her with a vengence. Everything she ate went straight through her. The diarrhea was a huge problem all day long. She was hungry, and felt like eating, but had a hard time doing so because as soon as she did, she had to run to the bathroom. (Okay, she can't run, but you get my meaning! When you gotta go, you gotta go!) I have no idea what we can do for the PLE. There is not much to stop the diarrhea. Believe me, we have tried everything. It is a matter to certainly pray about. The only help she will get for this problem, will come from her Heavenly Father.

As far as her pain level, she did excellent. Her back and arm did not bother her. In the afternoon, and throughout the evening, her stomach was awful. Her poor bottom is sore from going to the bathroom so much. I did help her take a shower tonight to help with the soreness. Oh how exhausting that is for her! As soon as I had her washed and dressed, she fell asleep. I knew she would. She told me, even with the exhaustion, it felt so good to wash and soak her sore places in the warm water. I was glad I could offer her a little comfort.

Tonight, when she woke from her nap, she was hungry. We thought and thought and thought about what she might attempt to eat. She finally agreed on potatoes and gravy. She ate an entire bowl, which was miraculous! But in a matter of minutes, she was on the potty again. But at least she was able to have a little bite of food in her belly. My poor angel!

At the moment, she is very sleepy. Her speech is slurred, but I know it is from the pain medication and the ativan. I do feel she is at peace. She and I have talked extensively about Heavenly Father's plan for her. She was so concerned today that she had offended her Father in Heaven by praying so many times to die. She told me she understands that her life is in His hands. She is ready to go at any time, but she will trust in her Eternal Father. He will take her home when it is the right time and He will take care of her until that time. I am so thankful for her faith! She is such a strong young lady and I tell her how proud of her I am every chance I get.

One day at a time. One hour at a time. Constant prayers. Unwavering faith. That is our formula for survival. Thank goodness for the gospel of Jesus Christ, for the plan of salvation, which constantly reminds us of our purpose on earth, of where we came from, why we are here, and where we are going. I would be lost without it!!

Wednesday, January 20, 2010

Wednesday January 20, 2010

My dearest friends and family, I have to start off by thanking everyone for the many prayers, thoughts, and service given to our family. We wouldn't make it through this time without so many wonderful angels, surrounding us with love. There is no way we would make it. I feel like the windows of heaven have been opened, day after day. I am so grateful for every moment of peace and comfort. I have had numerous moments where my heart is lifted, where the Holy Ghost fills my soul with peace. I need to feel that peace. I need to know I can do this. I will never be able to thank everyone enough for helping us so greatly!! Thank you!! Thank you!!! Thank you!!!! Thank you for making us better people, through your faithful service and love.

Last night was a better night. Ashley was exhausted. She took her medications early and fell asleep around 9:30. She slept peacefully until 4:00. What a blessing!! I didn't sleep so restfully. I woke up many times, checking her to see if she was still with us. I had no idea if she would live through the night. But it was not her time to go. When the light of morning broke through the bedroom window, she was still here.

Through the course of the day, she remained the same. The nausea wasn't as severe today, although she still had a couple of times when she felt sick to her stomach. Her facial swelling remained the same. I think the swelling over her right eye improved the most. Yesterday that eye looked awful! They both did, but the right was the worst. Thankfully, she seemed more at peace. She was still miserable, but her misery wasn't so intense. I know that was a direct blessing from heaven. Heavenly Father is watching over her. If she is to remain here on earth for a little longer, He will help her to endure. I know this!! I know it! I have witnessed it!

Tonight, she was tired. She slept off and on all evening. She didn't feel like eating, and didn't drink much. The main thing she wanted was for me to sit with her and stoke her arm and neck and face. We sat together, mother and daughter, for a long time. Jason, bless his heart, took care of everything else so I could. He took care of the dishes, helped the boys with their homework, ran to the store, ran to the pharmacy, ran to get Ashley breadsticks, and mediated the disagreements between the boys. He is such a wonderful man!! I thank Heavenly Father every day that I have him as my eternal companion. I would be nothing without him! I couldn't make it through this trial without him. He spoils me rotten every day. He compliments me, even when I wake up looking like the living dead! (0: He hugs me constantly, reminding me every chance he gets how proud he is of me, and the person I am, and the strength I carry inside. Heavenly Father knew I needed him. He knew Jason was the right man to be by my side, comforting me, keeping me calm, leading our home in truth and righteousness. I would be so ungrateful if I didn't express my deep love for him, for his forgiveness and unconditional love. We are a team. Forever.

The one thing Ashley wanted to do today, was to work on leaving messages for those left behind on the earth. She and I have been discussing this for a few days now, but it was something that we haven't been able to do until tonight. Ashley said it needed to be done, before she was too sick to tell me what she desired. She went through each member of my family, Jason's family, all her cousins, her grandparents, her good friend, and dictated to me what she wanted to tell them after she is gone. Oh my gosh! As if my heart isn't already ripped into pieces! I am going to save these messages for a later time. Ashley and I have a plan for them. I know it will be special when the time comes to share those messages for all of the people she loves so dearly.

The other discussion we had tonight, was about prayers. Ashley has astounding faith! She does! She always has. Tonight she asked me if I thought, Heavenly Father thought Ashley was angry with him because her prayers have not been answered in the way she desires. She prays every day to be taken from the earth, to be free from her burdens. She is still here, and I think she may be here for a little time yet. I assured her, Heavenly Father knows she is not angry. I explained to her that when we pray, we have to pray Thy will be done. Prayers aren't always answered in the way we think they will be. We have to trust in God. He is all knowing. He is all wise, and He knows what is best for his children, even Ashley. If she is here, there is a reason she is. He will bless her to endure. He will give her the strength to live a little longer. He will fill her soul with peace. I know it! And tonight as we discussed this, I knew she knew it too. Thy will be done. If we all continue to pray, and trust in our Father, we will be filled with peace. We will have the understanding we need. Our hearts will be comforted as we watch Ashley day after day. Don't ever doubt that!!!

Tuesday, January 19, 2010

Tuesday January 19, 2010

Ashley has continued to decline through the course of the day. When she woke, as I mentioned in my earlier blog, the first thing she did was try to throw up. Thankfully, after a few minutes, she was able to calm down enough to get her medications down. After that, she slept. I stayed awake for a little while, but soon the exhaustion got the better of me. I went back to bed around 11:00 and slept off and on until 1:00, when Ashley woke me up to help her get to the bathroom. She was nauseated then, but I couldn't give her any nausea medication for another hour. I did make her some peppermint tea. I made some for me too. As you can imagine, my stomach was in knots.

For the remainder of the afternoon, she was so tired, she kept drifting off to sleep. She would sleep for a few minutes, then wake up to make sure I was still at her side. All she wanted was for me to hold her hand and stroke her cheek. She wanted me to be right by her side, even when she was sleeping.

At 3:00, she wanted to go out into the living room. She stayed out in the living room for almost an hour, but had to lay down on the couch after only five minutes of sitting up. She looked so awful! Her face was so swollen, her eyes looked like little slits. Her speech was slurred and she was terribly pale. While she was in the living room, she wanted some chicken noodle soup. She took one bite before getting sick again. I helped her back into the bedroom, and she promptly fell asleep again.

The one special experience that she and I had today, was after she had gone back into the bedroom. At that time, she was having chest pains again. She felt dizzy and desperately sick. She wanted me to pray with her. She offered the most heart wrenching prayer! She could barely speak. She thanked her Father in Heaven for her family, for her mom and dad who have taken such good care of her. She plead with Him to forgive her of any sins she may have committed. She told her loving Father she was ready to go. She told him she felt her mom and dad and brothers were ready to let her go, and that we would be alright when she did. She told Him she wanted to come home. She was so tired of the pain and suffering!!! She prayed that we would be able to let her go, that we would be comforted. She told her Father she loved Him, and that she knew, He would help her. All I could do was cry!

It wasn't more than 15 minutes after she finished her prayer. She looked at me and told me that she felt so warm and happy inside. She said she hasn't felt the Holy Ghost so overpowering for a while. She said, "Mom, I know Heavenly Father is with me. He told me that you would be alright. It is okay for me to go now because I know you will all be alright when I do."

For the evening thus far, she has sleeping. She did try to eat a little, but was too tired. But you know what? She is at peace. I don't see the fear, the pain on her face tonight. She is in a place where she can rest for a time from her burdens. I know that is a direct answer to prayers.

I know many of us have questioned why Ashley has remained on the earth for so long. We have wondered in the silent chambers of our hearts why she hasn't been able to be relieved of her pain, despite her great faith and desire to be free. The one thing I know, and I do not doubt, is that God has a plan for her life. I have known this since the day she was born. I knew this when she was two and survived all those surgeries. I knew this when we brought her home, (she was 2), and she declined so much, they told us she would die. They told us her heart wasn't even pumping, just rocking side to side. She was so ill, the Make A Wish Foundation granted her a wish. In January 2000, they sent us on a trip to Sea World in San Diego. But she didn't die. She lived. She grew stronger every day. I still remember the day we returned to Primary Children's and she was improved so much, one doctor had to come look at her to believe she was that well.

We knew she had a plan at the age of 5, when again her heart was in trouble, and they didn't think she would live much longer. We knew that when she got to first grade, and the electrical system in her heart was all out of whack, they didn't know what would happen. I could go on and on. Her life has been one miracle after another. There is no doubt, she had not yet fulfilled her mission on earth. But now, her life is drawing to a close, and I feel she has fulfilled her purpose. Perhaps these last few days have been for me, to help me let go. I don't know. But I do know, this sweet angel has impacted so many lives. I don't think she will ever know how much she has touched all of us, inspired us to be better than we thought we ever could. So many have given of their time and talents to help us, to lift our hearts, to help us make it through another day. What a blessing it is to serve! I can't tell you how grateful I am to have been the chosen vessel to serve this valiant young lady. I have learned so much from her!! Heavenly Father knew I needed her!! I love her with all my heart!!! We will see what this night brings!!

Tuesday January 19, 2010

Exhaustion! Distress! Worry! All words rolling around in my head this morning. I have no idea what this day will bring, but I pray constantly I will be strong enough to keep moving forward.

Yesterday was actually a peaceful day. While Ashley wasn't any better, she wasn't any worse either. Her breathing was fine. Her face looked good. Her swelling remained the same. Her stomach wasn't bothering her as much. I felt pretty good about how she looked. In fact, my heart was silently joyful she was still with us and looking well. While her appetite remained small, she asked for food. I always rejoice when she wants to eat. To me, eating is, in a way, a small victory still. In case you can't tell, I was very thankful for one more day.

As the day wore on, Ashley declined. By evening, she was feeling poorly. Her face and body looked more swollen. She was having a harder time breathing. At supper time, she was hungry, but her stomach was gurgling and carrying on. I fixed her three different things trying to find the one she might be able to take one bite of. No luck. Shortly after 10:00, Ashley started into another major arrythmia. I didn't realize at first that's what was going on. She told me she needed to throw up, so I ran and got a pan for her. She heaved and heaved but nothing came out. At that point, she looked awful. Her oxygen levels dropped drastically. She literally looked purple all over. Her fingers and toes were so cold and discolored! She was so weak and lightheaded, she couldn't sit up. I grabbed her oxygen and encouraged her to at least breathe a little in. I was so scared she would pass out. At that point, it was all she could do to keep from throwing up. The nausea overtook her. She didn't tell me she was having horrible chest pains in addition to the nausea. But she didn't have to. Her heart was beating so hard, her entire body shook from head to toe. I don't think I have ever felt her heart beat so dramatically!! It was simply frightening!! I ended up giving Ashley her nausea medication, which she promptly threw up. She was so sick at that point, she couldn't sit up. So she laid on her side to throw up. She wanted me to rub her chest and stomach. I couldn't even give her more ativan or hydrocodone to help her calm down. She had taken a dose at 7:30, and couldn't take more until 11:30. So we sat, and waited and prayed. She asked me to pray with her. She offered the first prayer. In her prayer, she pleaded with her Heavenly Father to take her home, but only if it was the right time. She told him she couldn't do it. She couldn't carry her burdens any longer. Her words, "Please, take this pain away! I can't bear it! Please, take it from me!"

She prayed if she lived through the night, she would be comforted and that she would understand why she wasn't taken home. Oh my goodness! I was so numb at that point, I couldn't feel anything. I prayed and pleaded with Heavenly Father in her behalf. I prayed if she was meant to go, she would go, and it would be peaceful. I prayed for His mercy for my angel!!! I prayed, no matter what, we would accept His will for her. We would be able to keep moving forward.

I stayed by her side. She tossed and turned for a very long time. I did everything to provide a distraction. I read to her, we watched a movie, I told her a story, I rubbed her back, stomach, and chest, I held her hand. I didn't know what else to do!!

As you can imagine, I woke up a bizillion times in the night, checking on her. She was up and down and up and down. The chest pain and nausea finally subsided enough she was able to sleep a little. She did have to get up to go to the bathroom three times. That was an adventure with how weak and sick she was. I think we both finally fell into a deep sleep about 5:00.

I do have to say, in my pleadings and constant prayers last night, I didn't feel like it was her time to go. I felt like she would live through the night. I have no idea what this day will bring, or if she will live through another day. She looks awful this morning. Her color is terrible. Her face is horribly swollen. Her speech is slurred. She is nauseated and weak and had to throw up as soon as she sat up in bed. My only prayer is that this suffering will end soon. I can't bear to watch her go through another night like last night. I can't bear it!!! When she is the same, not any worse, I have an easier time wishing for her to stay with us. But not after last night. Perhaps that was what I needed to see so I will stop wishing for her to live another day.

Please, please pray for us! Today I feel like I am falling apart at the seams! My heart hurts! I know the only comfort will come through prayer, through my faith in Jesus Christ!!! I pray it comes!!!

Sunday, January 17, 2010

Sunday January 17, 2010

Super fast entry tonight. I am going to spend this night with my angel.

Ashley had her blessing tonight at 6:00 p.m. Up until that time, she was very uncomfortable. Not much had changed, and she was emotional and in visual distress. After her blessing, which her dad and Bro. Squires gave to her, she was at peace. I can't describe the feeling. It was like her burdens were literally lifted. She was able to take a bath, and eat a little bit. She took her meds and now is ready for bed. I have no idea what is in store for her. But I know Heavenly Father is watching over us. I know He is watching over our angel.

I am going to go enjoy the night with her.

Saturday, January 16, 2010

Saturday January 19, 2010

Oh what a day! We were blessed with the opportunity to fast. I was incredibly proud of the boys. They didn't even blink an eye when we had a family counsel, requesting them to fast with Jason and I. We explained to them the reason for the fast, that Ashley was ready to return to Heavenly Father and was asking for a blessing of release. They were expressly grown up as we explained what that was and why we were were fasting about it. This morning, they got up, and without complaint, happily fasted for their sister. I couldn't believe how willing they were. There was a very special spirit in our home. We had the boys fast until lunchtime, and then we prayed and ended their fast with them. Jason and I continued fasting until dinnertime.

Over the course of the day, Ashley remained the same. She had lots of dizzy spells and moments when she said her eyes were crossed. That happened three times when she was using the bathroom and it was very frightening for her. Her appetite was not great, but she did agree to eat a popsicle, but only after she knew the boys weren't fasting anymore. She didn't want them getting upset seeing her eating, when they were not. Even desperately sick, Ashley was more concerned for the welfare of her brothers that her own misery. I will never cease to be amazed at the inner compassion of my little angel. Even tonight, after dinner was finished, when I was helping her get to the bathroom, she was deeply concerned that I hadn't been able to eat yet, after fasting all day. She told me she would be super quick so I could eat my supper while it was still warm. Oh my goodness how she melts my heart!!!!

Tonight her dad and I came into the bedroom with her. We all three discussed the feelings we had after fasting today. She was very upset at the time. While we were saying family prayer, she tried to go to the bathroom by herself. It exhausted her so much, she had a hard time climbing back into bed and then she couldn't breathe. We found her in a crumpled heap, barely on the mattress, crying her eyes out. When I asked her why she hadn't paged me on the walkie, (which is our system when I am not in the room with her), she told me she didn't want to interrupt family prayer. Can you believe that?? Here she is, so sick she can hardly sit up, let alone climb off and onto the bed, and she is more concerned about interrupting family prayer than about falling!! Bless her heart!! I held her and she sobbed and sobbed and sobbed. She was so scared Heavenly Father would say no, that she couldn't have a blessing of release. She even prayed for strength to accept whatever answer we received. We know, beyond a doubt, it is time to let her go. She is ready. We are not ready, but we will be alright. I don't think a person is ever ready to lose someone they love so much!! The most important thing, is to make sure Ashley knows we are okay letting her go, that we will be alright. We won't be angry. She asked Jason and I two times if we were upset she wanted to die. We both had to gently reassure her we were not angry. We were sad, but never angry. All we want for her, is for her to have peace. She deserves it. She has endured bravely for so long.

After our talk, Jason gave her a very special blessing. It was not a blessing of release, but he did bless her to know that it was alright for her to let go. We were not angry she wanted to return to her Heavenly Father. We were ready and willing to let her go, and we would be alright. It was a beautiful blessing!! I can't believe the powerful blessings Jason has given over the past while. WOW! How thankful I am for the priesthood, that I married a worthy priesthood holder who is in tune with the spirit, and can use his priesthood at any time, day or night. After the blessing, we sat and cried and held our angel. Tomorrow we will make arrangements for another priesthood holder to come and help give Ashley her blessing. She was at peace with that. I am at peace with that. Jason is at peace with that. I know in the strength of the Lord, nothing is impossible. We will be strong. We will keep moving forward.

Friday, January 15, 2010

Friday January 15, 2010

Right off, I wanted to let everyone know we are going to have a special fast tomorrow. For those of you who are able, or who would like to join in, we welcome you. We need all the help we can get. Ashley has been asking, as I mentioned earlier, about a blessing of release. Tonight was terribly difficult for her. She was so weak, she couldn't get off the bed to use the bathroom. She couldn't sit herself up. She couldn't eat. She tried to color for a while, but didn't have the energy to hold the crayons. She tried to watch TV, but was so tired, she kept falling asleep. She had problems with diarrhea. She was miserable in every way. She cried and pleaded with me, asking if she could have a blessing of release. I didn't know what to say. I wasn't sure when it was appropriate for such a blessing to be given. Does the person have to be in a mostly comatose state? I wasn't sure. But I felt like the right thing to do would be to fast, to plead with our Father in Heaven, if now is the time for Ashley to be given permission for her spirit to leave her body. She is so ready to be free. One of her biggest fears, when we stopped her sotalol, was that she wouldn't die. She would continue on, day after day like she was. That is what has happened. Her heart thumps and bumps around constantly. I know it isn't in a normal rhythm, but still, Ashley remains with us. Don't take me wrong! I am so thankful for every day she stays with us. I wouldn't trade one minute with my angel. I am deeply grateful we were able to have her for Christmas and New Years. I am grateful she and I have had some delightful time together, while the boys were at school. I am grateful Jason has had some special time at home, with Ashley. What a blessing! But now, it is hard to watch her. She doesn't smile. Her sass is gone. Her laugh is gone. Her bright sparkling eyes are dull and empty and full of pain. She can't eat. She can't walk. She can't sit up without assistance. I can't bear to watch her suffer so!! I know, as we fast and pray, we will know what to do. We will know if it is time to let our angel go.

Last night, Ashley and I had a very special experience together. Ashley wanted to go to her room. She hasn't been in her room for a very long time. We sat on the floor, looking at her things, talking about times past, about things we have done together. We talked about her school. We talked about her friends. We talked about her projects, which now she is too sick to enjoy. It was a wonderful bonding moment for both of us. I think, for just a minute, Ashley felt like herself. She was reminded of the happy times, when she wasn't confined to her bed. There are so many happy memories. It was nice to forget the bad for a brief moment in time.

Throughout the day, Ashley remained the same. Her diarrhea was better today. She still went, but not nearly as often as yesterday. Her face was very puffy and distended. At this point, we won't increase her lasix, even with increased swelling. Her breathing is fine. I can't even tell you how grateful I am for that blessing, and YES, it is a blessing she can breathe!! She has other issues, but she can breathe. We will monitor her closely for any changes there. The main concern today: weakness. Every movement was a struggle: sitting up in bed, getting up to the bathroom, moving her legs under the blankets. It was awful! I am sure the lack of food is not helping matters. We tried to find even the smallest something she could eat. Jason, bless his heart, made three separate trips to three different stores to find specific food items she requested. He even skipped his dinner, when it was hot and ready, to run to McDonald's to get her an item she had a craving for. What an amazing dad Jason is!! What an amazing husband I have!! I have to say, he is my lifesaver. He has taken over all the errands. I haven't had to worry about a thing. I can't leave Ashley for long, especially with her diarrhea like it has been. For me to go to the store, would be super difficult. Without complaint, he takes care of it all. He takes the boys to and from school. He runs wherever he needs to get things for Ashley, and also, for me. I love him with all my heart!!! We are a team, and we are surviving because we are functioning as a team.

Once again, thank you thank you thank you all, for the emails I have received. I haven't been able to respond to them, but they are so helpful!!! When I have a moment of weakness or despair, never fail, in my inbox will be a note of encouragement and love. Then I am reminded that I am not alone. I am reminded I can keep moving forward. Love you all!! Please know how much everyone means to our family!! We are so blessed to be surrounded by such good people!!!

Thursday, January 14, 2010

Thursday January 14, 2010

I am so sorry for the lack of update over the past 24 hours. Last night was a very hard night for Ashley. She was feeling very poorly at bedtime and I couldn't take the time to blog. Yesterday turned into a nightmare. While her belly stopped hurting so badly, and her nausea subsided, she had horrible diarrhea. Every time she ate anything, within a few minutes, she would have to leap out of bed and barely make it on the potty before the diarrhea hit. I can't even count how many times she went to the bathroom. I was frantic by bedtime. I didn't know how to make it stop. We tried everything the nurse had encouraged us to try. You can imagine with all the diarrhea, Ashley didn't eat a thing all day long. She tried, but what fun it is to eat when as soon as you are finished, you have to run to the bathroom. Just an awful afternoon. By bedtime, Ashley looked awful. Her face was really puffy again and pale. I haven't seen her so pale for a few days. I didn't want to increase her lasix, not with so much diarrhea. We don't need her to get dehydrated. I am pushing fluids, so that may be the reason she had more fluid on board last night. At least her breathing was alright. What a blessing!

So bedtime came, and poor Ashley was too miserable to fall asleep. I was so tired by then, and I had a hard time interacting with her. Around 12:30 she wanted me to read to her, but I was too tired. I couldn't stay awake. After that, she went to the bathroom two more times. At 4:30, she woke me up and had to go again. She was so upset at that point, she couldn't go back to sleep, so she turned on the TV. I stayed up with her for a little bit, but exhaustion got the better of me and I crashed. I would drift in and out of sleep, checking on her. I have no idea when she fell back to sleep.

As you would guess, I felt pretty yucky this morning. I did not want to wake up to get kids ready for school, but I am still mom to them. Jason didn't have a good night either, so he got up late. He did help me all he could, but we were both dragging. Ashley didn't wake up until close to 9:30. When she did, she was in pain. Her whole body hurt. Her stomach was a mess. It took a while to get her settled and at least a little comfortable.

Then we had another horrible experience. She was so desperately hungry, she begged to eat a little bit. We put our heads together, thinking of everything we could for her to eat. She finally settled on something and I fixed it for her. While she ate, I exercised in the living room. Shortly after I started, I heard her yell for me. The dang diarrhea hit her so hard, she wasn't able to make it out out of bed fast enough and she had a little accident. It wasn't major but oh how she cried and cried and cried. She was embarrassed and said she felt like a baby. I hurriedly cleaned things up, washed her down and got her back into bed. By then, she was exhausted. The whole ordeal took its toll on her in every way. Physically. Emotionally. She hit the bottom and she cried for a long time. I told her it wasn't her fault. Not at all. It is her protein losing enteropathy, worsening as her heart continues to fail. It was awful!!

Oh how she wants this suffering to end!! She asked me about having a blessing of release. I didn't know what to say. I know Bishop Corder spoke to Jason and I about that not long ago, but it wasn't something I wanted to think about. Not yet. Perhaps we are coming to the time when we need to revisit that idea. I can't bare to watch her lie day after day like this. She is so unhappy. She is too sick and weak to do anything. It gets unbearable!! And I am torn in half because I am scared to be without her. Every day for the past 12 years, my life has centered around Ashley. For the past 6 months, I have been by her side constantly, caring for her every need. I have no idea what I am going to do when she is gone. Man that sounds selfish. I would never want her to continue suffering from day to day. Never! But I fear the hole that is going to be left. It will never be filled. I have to go on with my life. I know the time for fasting has come again. We need to have another family fast. Ashley wants that. She asked me about a family fast two days ago. I haven't been able to fast thus far because of my stupid antibiotic. But soon I will be finished. We have so much to fast and pray about. I could pray for the next ten years and still not feel like I have prayed enough. The only person who knows what is in store is Heavenly Father. Oh how I need his guidance!!! We all do. I trust in Him. I know He is with Ashley. I know He is watching over our family. We have to keep trusting in Him. And we will survive this horrible time in our lives.

I better finish now. Ashley needs her mom. Thank you all for everything!! Thank you for supporting our decisions. Thank you for all the emails, notes, cards, etc. They keep coming, and every one touches my heart, touches Ashley's heart, helps us to keep moving forward! May you all have a wonderful night!!

Wednesday, January 13, 2010

Tuesday January 12, 2010

Today was actually a fairly good day. Ashley didn't have any major heart episodes. She told me she felt her heart racing while I was fixing dinner, but I didn't know she had a problem until we were talking at bedtime. The most bothersome problem right now is her stomach. She was nauseated all day long. It was a chore finding anything she felt like eating. We increased her flagil to three times a day in hopes that might calm her digestive system down. I am also going to pull her morphine for a couple of days. When we started using the morphine with more frequency previously, she got very sick to her stomach. When we stopped the morphine for a bit, her stomach immediately improved. Where she isn't having respitory distress, I don't feel bad about switching to hydrocodone. I can still give that with the ativan, which she does need. Other than that, the day was quiet. Ashley didn't sleep as much today, and tonight she is very tired. But overall, it wasn't a bad day.

So it looks like we might have the funeral in Burley. I appreciate all your support for our decision. I was so worried I might offend someone or make our friends here feel bad. But it would be much easier to have the service there, in my own building, where I went to church my whole life. We haven't spoken to Bishop Corder about our plans yet. We will do that tomorrow. I was also thrilled to find out a very special friend of our family has agreed to be one of the speakers. He is a delightful, compassionate man and Jason and I know he will do a wonderful job!! (0: I originally wanted to ask my father to be a speaker, but it was too close to home. I won't torture poor grandpa like that! (0: And I know our friend is the right person.

It is late and my sweet angel is going to the bathroom yet again. I need to help her. Thank you all so much for your continuous support. The freezer meals have been delicious! The notes and comments and emails have been super uplifting. We wouldn't make it without the love and support of so many dear friends!

Monday, January 11, 2010

Monday January 11, 2010

As expected, Ashley's heart episode last night weakened her greatly. She was awake briefly this morning to take her medications, but promptly fell asleep for a couple of hours. She was too tired to eat. She was too tired to talk. All she wanted was to rest. Her stomach was a mess all day long. In fact, this afternoon, she felt like throwing up. The one thing we found she can at least drink is peppermint tea, which she drank four times over the course of the day. Tonight she tried a piece of bread, but that was the extent of her meals today.

This afternoon, she was again, just worn out. Her tummy was paining her. She felt awful! When she awoke around 5:00, she was puffy and working to breathe. I should have given her lasix around 4:00, but she was sleeping so soundly and peacefully, I didn't wake her. I think sleep is a huge blessing for her. When she sleeps, I know she is at peace. When she is awake, she struggles in every way.

Tonight she wanted a bath. We attempted a sponge bath, but it failed miserably. She got very upset when we tried to wash her hair. I ended up putting her into the bathtub. Miraculously, she was able to get in and out. I actually put her portable toilet by the tub so when she got out, she could sit right down. The toilet is bigger than the wheelchair and she can dry herself off better on it than in the wheelchair. The bath exhausted her. She promptly crawled into bed and fell asleep for another two hours. She would wake up periodically to make sure I was near. She just wanted me to sit and hold her hand and stroke her cheek. It was a very special moment for both she and myself. Bless Jason's heart. While I sat with her, he took care of our troopers. They had a wonderful time hanging out with their totally awesome dad. (0:

Right now it is 12:06, and Ashley is awake. She was finally able to take her meds. Her stomach is so gurgly and sick, she asked her dad to come give her a blessing. I really hope her stomach will settle enough she can sleep. We were up until after 1:30 last night. I know she is tired, as am I. I am desperately hoping we can get some better sleep tonight.

Nancy and I had a talk a few days ago. She encouraged Jason and I to start planning Ashley's funeral. She said everything we do ahead of time will make things easier when Ashley actually dies. That is what we have done. One of our biggest concerns is where to have the funeral. We originally thought we would have the funeral in Nampa. We don't want to bury Ashley here, but rather want to bury her in the Paul cemetary, by my grandpa and great grandparents. There is a plot available, right next to my great Aunt Ruth, who was also disabled for most of her life. The question is, do we have the service and viewing here in Nampa, and then drive to Burley immediately afterward for the burial? We have so many people to consider in the planning. We have many friends in Nampa. But we also have tons of family that would be coming from Utah and Wyoming. Our grandparents on both sides of the family would be best served by a service as close to them as possible. I know for a fact my Grandpa Morgan is not well enough to make the trip to Nampa. Then we have to consider all the children. Plus, we are using Rasmussen Funeral Home in Burley. We will have to travel there anyway to finish planning with Jeff. If we had the service in Burley, it would be easy to plan the viewing and funeral and burial, without figuring out how family would travel from one place to another. I know we must do what we feel is right. But what that is, I am not certain. So friends and family, let me know what you think. Would anyone be offended if we didn't have the funeral in Nampa? I wouldn't want anyone to think if we did everything in Burley, that we don't love everyone here. It would be a decision based on what is best for our family. Please, please, let me know what you all think.

Hope everyone has a great night! I can't wait to sleep!!!

Sunday, January 10, 2010

Sunday January 10, 2010

So this is going to be a really quick entry. Ashley is having a really bad night. I was so worried we might lose her. She started into an arrythmia which caused her horrific chest pain. She couldn't breathe. At the time, she was in the living room, with her brothers, and was so weak, it was difficult to get her back to the bed. I sat by her, feeling totally helpless, praying constantly that if it was her time to go, she wouldn't be in pain. It would be a peaceful passing for her. She wanted me to rub her chest, and I did. Jason got the boys to bed and then came in by us. Right now, she is still having pain in her chest, but her breathing has calmed down. Her heart finally stopped thumping and jumping, but it is beating weakly. It was scary! I have no idea what this night will bring, but I know no matter what, we will get through the night. Lots of praying to do!!

Last night was very long. Ashley and I were up and down and up and down. Jason was also. We were all so tired this morning, we didn't wake up in time for 9:00 church. Jason was planning to take the boys so I could stay with Ashley. We didn't make it. But it was alright. I taught the boys their lessons from Primary. We had a lovely evening together. Ashley was able to join us for a little bit, before she had the problem with her heart. I was grateful for that time to study the gospel as a family. The spirit was strong. I felt my spiritual cup fill, and I needed it. We all needed it.

The day was a difficult one for Ashley. She has been super tired and emotional all day long. No appetite. Feeling very down. I had a hard time finding ways to keep her happy. She cried over absolutely everything. Then she would apologize for being so upset. She was worried we would be angry with her because she was so emotional. Oh how that broke my mom heart!! I assured her, her dad assured her, her brothers assured her, we will love her NO MATTER WHAT! No matter how much she cries or how grouchy she feels, our love is unconditional. I hope she never forgets that.

Better go now. She is still very ill and needs her mommy. Thank you for everything! I have had numerous emails and well wishes. They all mean so much! Please know, even when I can't respond, I am grateful to everyone. My burdens have been lifted so many times because of the love of good friends. (0: Much love to you all!!!

Saturday, January 9, 2010

Saturday January 9, 2010

Sorry for the lack of blog last night. Ashley was upset and needed her mommy. I didn't want to take the time to blog. When she calls, I answer. (0:

So new developments: we now have a bedside commode! YEA! It has been a huge blessing to Ashley. It fit right next to our bed, hidden by our dresser, so it feels a little more private. Now all Ashley has to do is step off the bed and turn around and she is on her commode. Nancy was our hero. She had it here on Friday morning. I can't tell you how much easier it is for Ashley. She was just thrilled not have to make the walk to the bathroom. I was thrilled too. Walking is just too hard for her.

We are also working on getting the supplies necessary for sponge baths in bed. The bathtub is also too difficult now. Nancy said there are special washcloths and shampoo we can get from Norco. She is bringing them on Monday. I can't wait for that. One more way we can conserve her dwindling energy.

Yesterday was a fairly good day. Ashley remained the same throughout the day. We completely stopped her morning dose of sotalol, so I wasn't sure what to expect. Fortunately, nothing new occurred. Her swelling remained the same. Her heart did not have any strange rhythms that I noticed. At bedtime however, she was feeling pretty yucky. She wanted me to sit with her, watch a movie, and stroke her arm. We ended up watching Swing Vote. After the movie ended, she was still feeling anxious, so we read from the New Era for another hour. I always love reading with Ashley. Not only did we read several inspiring stories, but it was a great distraction. She was able to relax after reading and fell asleep. It was late, but she slept all night. No pain. No trips to potty in the night. It was peaceful for both of us.

Today has been another good day for Ashley. She woke up looking pretty darn good. No facial swelling like I expected. Her breathing was fine. She had pain in her arm, the one with the clot, but only wanted advil for pain. I didn't give her morphine or ativan until this afternoon. She even joked with her dad a little. I haven't seen her do that in a very long time. It was nice to see her spunky, sassy side. She laughed at a program on TV. Jason and I sat outside the door and listened to her laugh. It was a wonderful moment for both of us.

Her good was short lived. As the evening wore on, Ashley began to decline. She started feeling sick to her stomach. She tried to throw up, but only heaved around. She didn't eat as much today, so I am sure the empty stomach wasn't helping with the meds on board. After she got sick, I made her some peppermint tea, which helped. She eventually was able to eat a little chicken for dinner. I made her goolash, but that didn't settle well. She ate three bites and was finished. But hey, I will take three bites!!

This evening, she was way tired. Her heart was pounding around in her chest. Her breathing was more difficult. She wanted her morphine and ativan and advil. The dang arm was hurting quite a bit. Fortunately, her back pain over the past couple of days is better. I think the advil is controlling that.

After family prayer, she came into the bedroom, upset. She was worried about tomorrow, and having me gone for church. I am thinking I may only go to church for sacrament meeting, but I am not sure. If Ashley continues to have a bad night, I won't leave her side at all. But if the night goes well, and she wakes up feeling alright, I may go to sacrament meeting only. Poor Spencer, my little straight arrow, was distraught at the thought of coming home after sacrament. He LOVES primary. I told him he could still stay, even if I came home. Preston didn't like that thought, but if I snuck away, they would be fine. I would be there when they finished primary. Anyway, we will figure it out in the morning.

Ashley and I read for a little bit and now we are going to put on a movie. I hope she can have a decent night. We only have one day left on sotalol and then it will be gone forever. This week is just one big unknown. No one can predict what Ashley's body will do. The unknown is very hard for me. That is where trust and faith come in. But at least we have been given two days now where our angel has been more at peace than she has in a while. What a great blessing!!!

Thursday, January 7, 2010

Thursday January 7, 2010

Tonight the only word that I can think of is exhaustion!! Total complete exhaustion!! Last night was the worst night yet. Ashley and I went to sleep by about 1:00, but shortly after she fell asleep, she woke up very upset. She told me she keeps having these horrible dreams, where she feels like someone is holding her down, and dreams where Jason and I don't want her anymore. She cried and cried and cried. I talked with her for a long time. I told her about a time when I was a girl and struggled with awful dreams too. My dad gave me a blessing one night, when I was upset. I never again had those dreams. I remember being filled with peace. I told her she could have a blessing specifically for those dreams too. We talked about her praying for the Holy Ghost to comfort her. She has been promised, in her patriarchal blessing, that the Holy Ghost would be her constant companion every day, bringing peace, helping her burdens to seem lighter. After we talked, and I had stroked her arm for a bit, she was finally able to rest. She rested for a little bit, but ended up needing to use the bathroom a couple of times after that. She woke up at 4:00 and needed some pain medication. I felt like I was up most of the night. Both she and I were bone tired. I had a hard time getting up to get the boys ready for school. Jason helped me, and together, we got them to school on time. Thank goodness for him! I felt like I was in a fog.

The day has been good for the most part. Ashley slept through the morning. When she woke, she was in horrible pain again. Her back is so swollen, I am sure the pain is from the pressure of the extra fluid. I got her settled, fixed her some food, and then she slept again. Jason came home shortly after lunch. I was so tired by then, I couldn't keep my eyes open. He helped get Ashley settled and happy, and then shut the door so I could rest. I am so glad he helps me get the boys to and from school and then helps keep them happy and busy after they get home. I don't have the energy or strength to take care of them like I normally would. They need attention too. And Jason rocks at keeping them entertained. I couldn't do it without him.

Tonight, Ashley was very weak. When she tried to take a bath, it was all I could do to get her out of the tub. She was so tired and short of breath after struggling to get out of the tub and get dressed, she promptly fell asleep for another hour. She and I talked tonight about getting her a bedside commode. Nancy suggested that option a few days ago. Initially, Ashley was not in favor of that. But tonight, it was too hard. She asked if we could get her one tomorrow. I emailed Nancy and as soon as she comes in the morning, she will bring the commode. We have the best hospice nurse in the entire world!!

As for myself, I am spent. My whole body has been complaining. Tonight, I felt that feeling of panic again. I have to keep myself going. I didn't see how I would. My body felt sick. My stomach was in knots. I had a headache from Hades. My ear is feeling better, but I still have those sensations of being on a rocking boat. I know I need more sleep, but when to sleep, I don't know. I try to sleep when Ashley does, but there are always things to be done in the house. I have to keep up on that too. Jason helps a lot. I am so grateful he does, but it isn't enough. He needs time to relax too. I don't feel like I can exercise right now. I have to be by Ashley constantly. Jason will help her to a point, but then, because she is a 12 year old girl, she needs her mom. I have to be strong, and I don't feel like I am. I feel like I am falling apart. I went into the bathroom tonight, and prayed for a long time. I asked Heavenly Father to help me get through this. I asked for peace, for my own aches and pains to subside so I would feel like taking care of Ashley. While I am still completely fatigued at this moment, I do have peace. I know I can do this. I will be strong for my angel. She needs me, and I will be here, even if I am crawling to the bed!!! I know with prayer and constant faith, Heavenly Father will bless me. If we were too weak to handle this trial, then we wouldn't have it! I believe that with every fiber of my being.

Really quick, we ate the chicken and rice casserole tonight for dinner. It was delicious! So to the wonderful sister who made that dish, thank you from the bottom of my heart!!! And, I want the recipe! My kids all ate it. I was in shock!! Ha ha ha! (0: Much love to everyone! Thank you for your notes and prayers!! I can't respond to everyone, but know they mean so much!!!

Wednesday, January 6, 2010

Wednesday January 6, 2010

Today has been a fairly good day overall. Last night was another long night. I have decided getting sleep is way over-rated. Reminds me of the days when my children were small, and I thought I would feel like a zombie forever. Ha ha ha! It is alright. I don't mind staying up late, or popping up and down in the night. Ashley was good enough to wake me up, and to me, that is wonderful! I was so worried she might try to get to the bathroom by herself and fall or something horrible like that. But she didn't. She was persistent and woke me up so I could help her. I was grateful, and I can deal with the effects of no sleep knowing she was alright.

So today, not many major changes to note. Her lower body from the shoulders down is still very swollen. Her feet were a little worse. Increased lasix doesn't seem to help with the lower body, but at least her lungs and face were alright. If she can breathe, I am happy. Her digestive system seemed to flow pretty well. That is also a blessing. She didn't eat much, but she did eat.
We did have quite an adventure trying to bath her this morning. She was pretty sweaty when she woke and was worried she was stinky. I was laughing about that! Very typical 12-year old girl comment. (0: The main problem with the bath was getting in and out of the tub. Her legs wouldn't hold her. I tried to lift her, but only succeeded in squeezing her waist and hurting her back. Miraculously, I was able to get her safely out of the tub and back into bed without her collapsing. She was exhausted by then and promptly fell asleep for a little bit. She did spend some time in the living room after that. I think the change of rooms was a nice break for her. While I was reading with Preston this evening, she came out again for a few minutes. She felt like sitting with us while we read Island of the Blue Dolphins and the scriptures. I don't think she has felt like coming out for story and scripture time for several weeks now. It was nice she could tonight.

I did lay down by her this afternoon, when she napped. It was nice to catch up on my sleep a little bit. It is amazing what even an hour of sleep can do to rest the body and soul. Jason was able to be home with us this afternoon. I am so grateful he is able to be at home, with Ashley and myself. He isn't able to help her get to the bathroom and other such activities, but he knows how to make Ashley smile. He knows how to make us all laugh. He fusses over me constantly. He helps get kids ready for school, drops them off and picks them up. He runs to the store and the pharmacy. He cleans, cooks, and runs interference with the boys. He gets up in the night to give blessings. I am so glad I married such a wonderful, kind, compassionate, righteous, handsome man who every day makes me feel like an 8 cow wife. I couldn't do this without him. Never!

I have to share another very special experience. But first, a little background. When Ashley was in kindergarten, she became friends with a very special young lady named Kiara Badger. Over the course of that year, these two girls became inseparable. Kiara saw something wonderful in Ashley. Ashley saw something magical in Kiara, and to this day, they have remained the closest of friends. A few days ago, Kiara put together a powerpoint presentation for Ashley. Her delightful mom, who is also one of my closest friends, emailed the file to me a couple of days ago. At first, we couldn't see the slide show with music. Then Sarah found a way to send me a file that showed the slides and had the music Kiara had picked. I couldn't get that file to open either. Kiara was so eager to get the presentation to Ashley before she was took sick to enjoy it. Tonight, Kiara's aunt drove all the way to our home to bring me a DVD with the presentation on it. We were finally able to see Kiara's masterpiece. I am going to try to post it on this blog. I can't believe what an amazing job she did!! It was so touching!! I can't thank her and her wonderful family enough for being our friends, for taking the time to send this special touching message to my angel. It made Ashley's whole night! And mine!! (0: Tears and all! Ha ha ha! I want to share it with you, and will try to post it. If it doesn't work, I will have to have Jason help me. I know you will all enjoy it as much as we did! We love you Sarah, Kiara, Eric, and Tyson!!!!!

Again, a very special thank you to all the wonderful sisters who gave freezer meals to Sara Hodges for our family. I was floored when I saw all the food they sent! What a blessing! What a lift for me! I love you all! Thanks for being our angels!! There are angels among us!! Love you all!!!