Sunday February 28, 2010

How grateful I am for priesthood blessings. Last night, I was unconsolable. I felt like the world was crashing down around me, like I was in a deep, dark hole of sadness and I would never escape. I cried and cried. Poor Jason came in and sat by me, trying to figure out how to help me. I couldn't even talk. I didn't know how to voice the grief that was gripping my heart. He finally suggested I have a blessing. I can't tell you how peaceful I felt once he lifted his hands from my head. Then I cried and cried even more because I was so grateful for the warm reassurance from my Father in Heaven that I would be alright. I am so deeply grateful for Jason, and for his unconditional love. He is such a good man. I can't believe I am so blessed to have a man like him as my eternal companion. They say you should marry above yourself, and I did. Jason continually lifts me higher. With him by my side, as well as the love of so many others, my parents and siblings and friends, and with my Heavenly Father, I know I will hold together. I won't crumple into little pieces like I fear I will.

That being said, today was another heart wrenching day. Ashley continued to struggle. Her breathing has been labored. The morphine and other drugs do help her be sleepy, so she spends more time sleeping. But the breathing, I don't think it will improve. It is hard to watch her. She struggles so for every breath. She continues to weaken. She nearly fell three times today attempting to get to the bedside potty. I did slide it closer to the bed, in hopes she might reach it easier. It was still a major effort for her to get up. She was able to eat some turkey this afternoon, when we had Sunday dinner. I fixed turkey especially for her, at her request. I know how much she loves eating turkey. She couldn't eat much, but at least she was blessed to get a few small bites.

I also successfully gave her a "wheelchair" bath this afternoon. She can't get into the shower on her chair, but I sat her in her wheelchair, wrapped her in towels, and rigged a hair thing with a garbage sack so I could wash her hair. It worked beautifully and she relaxed so much after a refreshing wash. She is having more problems with incontinence. The accidents are becoming more frequent. She gets so desperately upset when she loses control of her bowels. I always try to reassure her. We don't tell anyone, especially not her brothers. It isn't her fault. I remind her that it is the disease. We clean things up and then she is alright. Bless her heart!!

This week is going to be the biggest trial of our faith yet. I feel that through every fiber of my being. I am not sure Ashley will live out the week. I know the time is coming when I have to let go of my angel. I am going to have to pray every second of every day to be strong enough to let her go and have the faith to keep moving forward. But that is what we will do. Keep moving forward, trusting in our Heavenly Father. I know with lots and lots and lots of faith, I can bear the grief that is already consuming my heart and soul. Thanks to everyone for continuing to support us. We need you. Please don't ever think your comments, no matter how small they are, are not helpful. Every word is a blessing!!! What a huge blessing to have so many wonderful neighbors and friends and church members behind us!! We love you all!! We look up to you all!! Thanks for being our angels!!! (0: May everyone have a beautiful week full of peace and safety!!!

Saturday February 27, 2010

I am happy to say Ashley slept for five straight hours last night!! Yea! We both slept better than we have for a long time. Man it feels good to sleep. I remember the days when my kids were small, and I was up and down all the time. Felt like zombie I did. Ha ha ha! I was so tired during that time in my life. But I survived. There will come a time when I will be able to sleep.

It was another long day for us. Jason was super busy at work. I am thankful for the customers. It means Idaho Watersports continues to be successful. They deserve to succeed. They all work so hard. The bummer part about Jason's busy day was that he had to work until late. I think he made it home by 8:30. I missed him a lot. It was a very emotional day for me, and I wanted to curl up by him and cry for a while. He is always so good to sit and hold me when I am sad. These days, I feel sad all the time. I try to stay positive, but it is so hard. I find myself feeling emotional over the smallest things. Sometimes commercials make me cry. I mean, come on!! Who cries over a commercial???

Ashley was thankfully very sleepy all day long. Her breathing was still rapid, but I felt like she was working a little less than she did yesterday. I think the morphine is helping, as well as the increase in lasix. Her face was very swollen when she woke. It has continued to look puffy. She had huge bags under her eyes this evening. The swelling, coupled with the pale white skin made her look awful. Her eyes didn't help. The additional morphine makes her eyes look glazed and unfocused. The past couple of days, her eyes have looked so empty and lifeless. It kills me! She has always had such sparkle in her eyes. I miss the sparkle so very much!! There are so many things I miss.

She didn't hardly eat a thing today. I had to push her to try. I was so fearful of her poor stomach being empty with morphine on board. I know morphine has been a problem in the past. I pray it won't be a problem now. We need it. It does help. I would be beside myself if there was nothing we could offer Ashley to make her more comfortable. I pray she can stay comfortable throughout the night.

Tonight I am so full of grief. I can feel her slipping away, more and more every day. I don't want her to suffer. I know there is no quality of life left for her anymore. She has made her peace with everyone. Her affairs are in order. She is ready to return to her heavenly home. It would be such a blessing for her to go home. But dang it all, I don't want to let her go. I just don't know how I will be able to live without my special angel girl. I am going to miss her so very much!!! I am going to miss girl's night out, shopping trips, getting haircuts, making crafts, studying together, dancing together. I am going to miss her smile and her laugh and her brave little heart that is so full of love for everyone. It hurts so much already and she is still here. Oh how it hurts!!!! But I have so many examples to look to, people who have walked this path and have survived. They still smile. They still live. Their lives didn't stop just because they lost a loved one. I have to go on too, for my wonderful husband and three beautiful boys. I have great faith Heavenly Father will give me the courage to keep living and breathing and loving life. He will help me bear this burden that seems, at this time, like the biggest, tallest mountain. Thanks to everyone for your continued faith in us, in me. I feel so weak!!! It helps so much to know others believe in me still. Thank you so much!!!! Keep praying for us. The hardest time is still yet to come.

Friday February 26, 2010

Today was another long day. Seems like I say that all the time now. But the days seem so long at times. Last night didn't help. Ashley and I had a horrible night. Poor Jason did too. We were all tired and grumpy this morning. Ashley's problem wasn't the diarrhea. She couldn't breathe well. It was awful! She finally gave up and turned on the TV shortly after 6:30. I was so tired, I fell back to sleep for a little bit, but I know she didn't. The boys were thankfully very cooperative. I wasn't in the best mood, and it was so nice to have them get ready without too many reminders. Yesterday, Austin woke up searly. When I came out into the living room at 7:45, he was dressed and ready for school, coat and all. He had laid out Spencer and Preston's backpacks and shoes. He had breakfast on the table, with bowls and spoons for everyone. We were like, "Who are you and what did you do with Austin?" Ha ha ha ha! For those of you who know Austin well, you are really laughing right now. He is NOT a morning child. It usually takes lots of reminding to get him out the door on time. Anyway, we are so proud of our boys. They are amazing!!! When I need them to step up and help out, they do. What troopers!!! (0: Jason and I can't praise them enough for how well they have done. Their help this morning lightened my load considerably!

This morning, I felt so overwhelmed. It is desperately hard to see Ashley continue to decline. It is desperately hard to see her struggle to breathe, to see her so weak and forlorn looking all the time. Her color is awful. Her eyes are droopy and lifeless. Her legs hurt like heck. I know she suffers greatly!!!! Through it all, she continues to bear her burdens with grace and dignity. She is not bitter. She is not angry. She doesn't complain. She will cry, but only because of the intense pain and discomfort. I don't blame her there! I would cry too!! I know Ashley is dying. I see little pieces of her disappear every day. This morning, the grief was unbearable! I felt sick and tired to boot. I was a mess. I didn't feel strong enough to handle it all. It was like I had a 50 pound weight on my heart. I knelt down in the living room, and poured my heart out to my Father in Heaven. I prayed and prayed and prayed like I haven't prayed for a very long time. As soon as I closed my prayer, I felt the weight lift from my heart. I felt the fear and the grief slither away. I felt peace. I knew, beyond a shadow of a doubt, I would hold up under the pressure. I knew Ashley would be blessed. And I watched the blessings of heaven poured out upon our angel over the course of the day. She was able to breathe a little bit better. She was able to rest. I saw more comfort in her than I have seen in a long time. That wasn't by chance she was able to have some peace. It was a direct answer to the prayer of a distraught mother. How grateful I am for prayer! It works!!

Nancy and I talked again today about how to help Ashley as best we can. The plan is to add an additional dose of lasix in the night time. We are also adding a small dose of morphine in between doses of ativan and hydrocodone. I tried the morphine this afternoon and it helped her breathing to slow a bit. We have to get the fluid under control so she can breathe. We are also going to add immodium to help control the diarrhea a little bit more. We are hoping that will help her so she won't have to get up to the bathroom so much. Bathroom trips take so much out of her. I had to give her a sponge bath today as well. She was too weak and out of breath to even consider sitting in the shower on her chair. It isn't her favorite thing, and it still zapped her energy, but it was easier. Every little bit of comfort we can give, we try to give.

I can't express my gratitude to my Heavenly Father for this day. We were blessed, in many ways. I know we will continue to move forward with faith. I know we will survive!!!!

Thursday February 25, 2010

Sorry for the lack of blog last night. It was not a good night. Between Ashley feeling so poorly and myself feeling extremely tired, I didn't feel like writing. Night time is never restful anymore. It looks like we may need to add a dose of lasix in the nighttime, especially if Ashley's breathing continues to become increasingly difficult. That will mean more ups and downs in the night time. I have no problem with that. But I do worry how hard it would be on Ashley. She is so weak and out of breath, getting out of bed is a huge issue. She will sit up, have to catch her breath, then pain-stakingly climb off the bed to the bedside toilet. She has to catch her breath again. Then getting off the toilet and back into bed takes her breath away again. It is literally all she can do to get up to the bathroom. The more she goes, the harder it is going to become. Lots of praying to do over all this!!!! Praying, fasting, praying, fasting........

Today felt more comfortable to me. Ashley slept most of the day. She woke up, took her meds, tried to eat, then fell asleep for a while. Then she was awake, then back to sleep. It was like that all day long. I haven't seen her sleep so much in a long, long time. The sleeping part is a blessing. When she is sleeping, she is at peace. The pain, the aches, the misery, for just a short time, seem to be at bay. As soon as she wakes, she is miserable and emotional, but to see her resting comfortably, is truly an answer to prayers. The part that was hard today was watching her breathe. When she inhaled, her whole body would shake. I could see she was working hard. Her respirations have increased lately, but today, she was breathing harder than she ever has. As I sat by her, her heart, at times, would beat so furiously, I could feel the vibrations rip through her body. It was scary!! I was so terrified her heart would stop!!!

The other worrisome part was her color. She was extremely dusky and pale all day long. When Jason came home from work, that was the first comment he made, how awful she looked. Her face was more swollen, but it was the color he noticed. I know her oxygen levels are falling. That part is obvious. But we haven't seen her look so pale in a very long time. Not since she had the really bad arrythmia so long ago.

I don't know what else to write tonight. The trial continues. The pain grows. The suffering is never-ending. I have no idea what the next few days will bring to us. I hope and pray, I pray continually, that no matter what happens, we will be able to keep moving forward. Thanks again to everyone for your faith, for your prayers, for your words of encouragement. At times, I don't know how I am ever going to deal with what is to come. It seems so hard. It seems so impossible to survive. But then I am reminded I am not alone. Heavenly Father would NOT give us anything we can't handle. I know we will be blessed. I know soon my angel will be at peace. How she deserves that peace!!!!!! How I pray she will soon be free from her heavy burdens!! It is so difficult to watch her suffer so!!! Lots of faith and prayers at yet needed!!!!

Tuesday February 23, 2010

"No matter how dark the day, the sun will always find a place to shine." I have no idea where I first saw that quote, but it has stuck with me for many years. It is a good reminder that no matter how bad a day seems, there will always be something good. Sometimes you have to look, and look very hard to see the sunshine. But it will always be there. We had to look for sunshine today.

Last night was not restful. Ashley was up and down several times. When she was up at 3:30, she was in pain and fought with diarrhea. I gave her some more medicine, but it took a while before both she and I fell back to sleep. With a lack of sleep once again, we were both feeling a little ragged this morning. Once I get going, I am fine. But poor Ashley was bone weary. She was only up for an hour before she fell back to sleep.

Her appetite was almost non-existant all day long. She attempted to eat this morning, and then again at lunchtime, but food did not agree with her. She ended up feeling very sick to her stomach. Tonight she had no desire to eat at all.

Her legs were awful today as well. They hurt terribly when she has to get up. They hurt when she lies back down. They hurt to move around on the bed. It seems like everything bothers her poor legs. I am so grateful for her pain medications. They offer some relief, and they help her sleep. I have no idea what I would do if I didn't have anything to offer to help ease the pain. I would be in absolute despair!!!!!

Tonight was very quiet. Ashley slept off and on all evening long. She didn't talk. She didn't smile. She didn't do anything but sleep. For a short time, she was at peace. What a wonderful blessing it was to see her relax. It was not a comfortable day for her. Both Jason and I felt on edge. It is so draining to watch her day after day. We have no idea what to expect. We have no idea how long she will be with us. She gets sicker with each passing day. Her suffering is great. At times, our situation over whelms us in every way. We get discouraged. I know Ashley is discouraged. That is when you have to look for the good. We can't sit around crying. We can't let this situation get the best of us. When Jason and I are upset, so is our angel. She can't stand to see us upset because of her illness. What good would it do us anyway to sit around moping and boobing? She is still here and I want every moment with her to be the best it can be. When you focus on the positive, soon your problems don't seem so big anymore. Couple that with faith and prayer, and nothing can get you down. I know Heavenly Father will continue to bless and strengthen all of us.

Monday February 22. 2010

Happy happy birthday to my wonderful sister!! I know I already wished you a happy birthday, but I do hope your day was wonderful!!! (0: This particular sister is a beloved aunt and an amazing person. We are all so thankful for our Tammy!!

Last night was a slightly better night. Ashley was awake three times, but was thankfully able to fall back to sleep without much difficulty. I did give her some medicine at 3:00, and she was able to go until 9:00 without more medicine.

When she woke, her body hurt. She was exhausted. Her belly was a little more settled, and she wanted to eat. Of course, she is never able to eat much. But at least she tried. After she ate, she was so sleepy, she crashed for a short time, until Nancy came. My biggest concern right now is the shortness of breath. It gets worse and worse every day. I was concerned that we might need to max out all the doses of lasix. Nancy felt like instead of going up on the lasix, we need to use ativan and occasionally morphine to help her breathing feel easier. The fact is, Ashley's heart is functioning so poorly, she will lose her breath. Thus, even sitting up in bed, or taking three steps to the bedside commode, completely wear her out. Ativan does help her relax. I am so thankful there is something that might offer her even the slightest relief.

This afternoon was hard. When the boys came home from school, they were rowdy and loud. They did go outside for a little bit. Thank goodness for sunshine! (0: But then they came back in and Austin and Preston started fighting. I was outside, working in the back yard, and didn't realize they were as loud as what they were. Ashley got very upset and started sobbing. Jason was upstairs, and came down to help out. It took us a while to calm her down. She can't handle anything loud. All of her senses are in over-drive. It is awful for her! And she always feels so bad when she gets upset. She doesn't want to get anyone in trouble or be a burden in any way. Bless her heart!!

My darling Jason ended up taking the boys back to the school for a while. He even took them to the store so they could use some of their Christmas money to buy a little something special. They love their dad!! He was a lifesaver tonight. While they were gone, Ashley was able to rest and calm down. Her heart was pounding. Any time she is upset, her heart freaks out. It was such a relief to see her breathing slow and feel her heart stop beating so furiously.

I found out today that my dad is having problems with his heart. The doctor told him it is fluttering and that he needs to have his heart shocked to help it go back into a normal rhythm. My parents will need to go to a cardiologist in Pocatello for further consultation. We were laughing because my dad joked about he and Ashley having "twin" problems. She smiled at that. How she loves her grandpa!! It was kind of special to have a connection with him, although she wouldn't want him to be sick like she is. The smile was nice. I think that was one of the only smiles I saw today. She always looks so sad. We will all continue to pray for my wonderful father. I know Ashley was deeply concerned about him. We all were. I hope he will feel better soon.

I have to send out a few special thank you's once again. There are so many wonderful people who have blessed our family once again. I want to thank my Aunt Peg and Uncle Jim for the beautiful flowers that arrived today. The whole bouquet was so lovely and happy. It brightened Ashley's dreary day right up!! I wanted to thank the Moyes family, and especially Olivia, who made Ashley a very special pillow. It was darling gift, and Ashley was deeply touched you thought of her. Thank you!! And to my wonderful neighbors who left a note in our mailbox this morning. Ashley loves you. It was so thoughtful to let us know, your prayers are with us too. I am so grateful for every prayer!! Prayer is what gets us through each and every day. What a blessing to have such special friends and neighbors!!! Love you all!!

Well, I better go take care of my angel. I wish everyone a heart full of peace tonight!!

Sunday February 21, 2010

Last night was not a good night. Ashley was feeling very poorly at bedtime, and she needed my exclusive attention. I felt pretty rotten myself. I had a headache from Hades, so I didn't want to blog. There wasn't much positive to say anyway. It felt good to put it aside for a little while.

Neither Ashley or myself slept worth a darn last night. Lately, I wake up several times in the night. I know Jason does that all the time. I have no idea how he runs on so little sleep. He seems to handle it, but it kills me when I don't get enough sleep. When I woke up this morning, I felt like I had been run over by a truck. It was the third night in a row with very little sleep, and I was feeling it. Ashley felt it too. She was so tired and her body was hurting and she couldn't breathe. The breathing is getting harder every day. I was so hoping she wouldn't have to deal with that. Unfortunately, that isn't the case. I got her meds down as quickly as I could. She couldn't have any more ativan at that time. I gave her a dose at 6:00, along with her pain medication so she could attempt to fall back to sleep. Then it was hurry hurry to get the boys ready for church. Jason took them today. YEA!! (0: Because I slept in so late, (I didn't get up until almost 8:20), they didn't make sacrament meeting, but they did make everything else. Today I felt envious. I needed the spiritual refill. I miss being at church!! I miss the people. I miss the uplift. I miss the sacrament. I miss everything! It has been a while now since I have been able to attend. I was so proud of Jason for going. He is normally the one who stays with Ashley, so it is different to be the one who goes. But I know they all reaped many blessings for making it to church. (0:

While they were gone, Ashley was finally able to take some more pain meds. She was thankfully able to rest for a while after that. It gave me enough time to take a shower and clean up, prepare dinner, read my scriptures, pray, and read my Gospel Principles lesson for the day. I have to pat myself on the back for that because lately I haven't read much. I feel such a huge difference when I read from the scriptures. HUGE!! My cup is refilled. I feel the Holy Ghost fill my heart. I need that peace so desperately right now. There is so little that makes me happy these days, that gives me peace.

Ashley woke up right as our men came home from church. She was still pretty miserable, and wanted to take a bath. We decided, due to her lack of strength and how out of breath she already was, to put her potty seat into the bathtub and have her sit and shower instead of trying to get her in and out of the tub. It is a little easier that way. She still struggled tremendously to get from the wheelchair into the shower and from the shower back into the wheelchair. Then she had to sit for almost ten minutes in the wheelchair before she had the strength to get back into bed. Then of course, she fell asleep as soon as I helped her get dressed.

We let her sleep for a few minutes while Jason and I finished getting dinner on the table. Ashley woke up right as we started eating and wanted to try some potatoes. I was thrilled she wanted to eat. Jason helped me clean up, and then I came in to lay by Ashley for a while. I should have slept, but Ashley and I ended up watching Starstruck on Disney. I did close my eyes for a little bit when the movie ended, but that was short lived. Ashley by that time, was struggling again and needed medicine and to go to the bathroom. Jason was so helpful this afternoon though. The boys were hyper all afternoon. They were driving us crazy! We sent them outside, but they didn't stay out for long. Jason wanted me to be able to rest so he took them to the school for a while. Bless his heart! He was tired too, but I was so thankful for the quiet time. I hope I returned the favor a little bit tonight. I tried to run interference so he could have Jason time too. We have to keep spelling each other off or we won't make it. I think he does way better than I do. He is such a sweetheart!!! (0:

Ashley continued to have a rough night. When I tried to help her to the bathroom a while ago, she was so weak, she got stuck halfway on and halfway off the bed. She wasn't strong enough to push herself up and I couldn't get her up. Her legs hurt too bad to get down too. She couldn't move them. When I tried to lift her her, she would cry out in pain. It was just horrible!! She was upset! I was upset!! I was about to call Jason for help, but she was finally able to get her leg to move backward enough she could get off the bed. Then I helped her up again. That took all her air and then she couldn't breathe. She turned absolutely blue! I thought she was going to pass out! It scared the tar out of me!! She is still panting now and that happened over an hour ago. Thankfully, it was time for ativan, so I gave her a huge dose. Ativan does calm her so she feels like she can breathe better. What a blessing to have something!! I can't bear to watch her struggle like that. Brings back way to many memories from when she was little. I do hope tonight will be a better night for all of us. We are all feeling weary to the bone.

I am going to shoot Dr. Etheridge an email tonight to ask her what we can do when we max out Ashley's lasix. I have a feeling that is going to happen very soon. The breathing is a huge issue. She can't breathe, and I don't know what we can do when we can't give her any more lasix. It is frightening in every way!! I don't want her to die like that!! I have prayed over and over again that if it is God's will, she will be able to die peacefully, not struggling for every breath. I can't bear that!! I CAN'T! But it isn't in our hands. I do know, Ashley has angels watching over her. I know that. I feel that. If she is given that burden, she will also be given a way to bear it. And we will too. I can't imagine how I can watch that, but if we have to, we will be given the strength to do so. Please, keep praying for us!!! I know Heavenly Father hears every prayer. He will help us. He will help anyone who reaches out to Him in their time of need. (0: Keep up the faith everyone!

Friday February 19, 2010

Tonight will be a very short entry. Ashley has been very ill all night long, and she needs her mom. It was not a good day. Ashley continued to decline. Her breathing was awful when she woke this morning. I could hear congestion in her chest. After she took her morning dose of lasix, she felt slightly better. Her breathing eased a bit. When Nancy came, she felt like Ashley was still working enough to breathe, she needed another small dose of lasix, which I promptly gave her. After talking, we decided the lasix dose needs to be increased, especially at bedtime. So now, I will give her 2.5 mL morning and afternoon, and 3.0 mL in the evening. We also decided to increase her ativan and hydrocodone, giving her the biggest hit at bedtime. The hope is to help her sleep more restfully through the night. Last night Ashley woke in horrible pain. I had to give her pain medicine to help her get through the night. Her legs are so bad! I don't know what to do to help her. The pain medication only helps a little. Every time she gets up, her legs ache so much, she will get back into bed and cry. Heat doesn't help. Ice doesn't help. Massaging them doesn't help. I can't think of anything worse than never-ending pain. If she continues to be in pain, Nancy told me to increase every dose of hydrocodone to 6 mL, versus giving her that dose only at bedtime. I can also add morphine, which Ashley doesn't want. It makes her so sick to her stomach. She doesn't need that right now at all!! It is so discouraging to watch her suffer so!!!

Tonight Ashley went into another arrythmia. She got up to use the bathroom, and upon getting back into bed, she turned absolutely blue. I could see her panting, so I asked her if she was alright. It is normal for her to catch her breath, but I could see she was really struggling. I felt her heart and it was going fast, then pausing, then going fast, then skipping and pausing again. It was beating so furiously, I could see her chest jump with each beat. It was scary! I gave her ativan to help calm her, and then sat by her while Jason, bless his heart, finished scripture and prayer with the boys and helped them to bed. That was all she wanted. To be held.

When Jason came in to the bedroom, she asked him for a blessing. At that point, she was still panting and very upset. Jason always gives such beautiful blessings!! Tonight was no exception. As soon as the blessing was finished, Ashley relaxed. Her heart stopped jumping. She was able to catch her breath. I could feel peace fill the room. It was a miracle. I have no doubt, Heavenly Father is watching over our angel. He loves her. He knows her every pain. He is so proud of her, and as long as she is with us, He will lift her burdens.

Thursday February 18, 2010

I can't believe in only a week February will be over. Wow! It seems like yesterday it was the beginning of a new year, and now we are only a few short weeks away from spring break. How time flies when you are having fun! Of course, "fun" is not the word I would use for our situation. Nothing is fun. It is about survival. That is what we do. We survive from day to day, from hour to hour, and at times, from minute to minute.

Today was one of those days. When Ashley woke up this morning, her entire body was a mass of aches and pains. She had lots of swelling in her back. The swelling was so bad, she felt like she had a big lump. It was horrible! She was working to breathe, and after struggling to get out of bed to the bathroom, she had a complete meltdown! Thank goodness for pain and anxiety medications. I gave her a big dose of both, and in a short time, she was able to fall asleep. I can't tell you how relieved I was to see her relax and rest. What a blessing!!

Throughout the rest of the day, Ashley was miserable. Her legs grow worse every day. This evening, she could barely stand on them. I had to hold her up. The weakness is one thing, but when they hurt her so badly, that is another problem altogether. After she stands on them for even a couple of minutes, they ache and pain her so much, she will sit and sob. I wish she didn't have to use them at all, but how else can she get up to the bathroom? I suggested we move her bedside toilet right next to the bed, but that upset her. She didn't want to do that. But we may not have a choice. If it keeps her from using her legs, I think it would be beneficial.

Eating was a complete bust. Ashley's poor stomach hurt for most of the day. She tried to eat a couple of times, but found the food did not agree with her. I do hope tomorrow she might be able to get a little something down. I always worry all the medications she takes will upset an empty tummy more than a full one.

Our angel is so ready to return to her Heavenly Father. Her suffering grows more intense every day. She has been so brave! I couldn't be more proud of her!! I know she feels like she isn't enduring this trial so well. Bless her heart!! But she is. She is so strong. I do hope she won't have to suffer much longer.

Wednesday February 17, 2010

Wow what a day it has been! I am glad this day is over. It wasn't that the day was awful. It hasn't been a bad day. In fact, we had several moments that were pretty wonderful. I feel very blessed. Sometimes this whole situation seems to swallow up all my happiness. I don't want anyone to think we are worse off that anyone else. I know so many others in this world suffer and endure more than we have. I know there are lots of other children who are sick or terminal. My heart goes out to everyone who is struggling in one way or another. It may not be with a sick child like us. But we all have our own burdens to carry. We are never alone, struggling under the weight of our burdens. There will always be someone there with us. There are always angels watching over us. They come in so many forms: friends, family members, concerned neighbors, a total stranger in the store. For us, so long ago, those angels were Elder Rasband and Elder Rowe. I got an email today, letting our family know, those two great men still think of us. After all this time, they haven't forgotten our family. I can't think of anything more touching! I still remember the spirit that filled our home when they came to visit. It was remarkable!! Just hearing of their concern gave me the lift I needed. It reminded me again, we are never alone. Heavenly Father watches over us. He lets us know we are loved and special to Him, and through his servants on this earth, He reaches out to us.

Ashley continued to struggle. When she woke this morning, she felt very tired and her body was hurting. The good part, she was hungry and wanted to eat. She wasn't able to eat a lot, but I am thankful for every bite that goes into her mouth. Thankfully, the diarrhea wasn't as bad. She was able to eat and not run to the bathroom continually. Definitely a blessing!! (0: Our biggest hurdle today: surviving the bath. She loves sitting in a warm bath. Who can blame her! When I feel sick, I love to soak too. She wanted to bathe so badly, I relented and filled the tub. I knew she was already very short of breath and tired, and that it would be very difficult, but we went ahead and made the attempt. Yes the water was super comforting to her. Yes, she was desperately tired climbing into the tub and had to sit for a time to catch her breath. Getting out of the tub was equally difficult. But through it all, she survived! She had to take a nap afterwards, but I was grateful she somehow found the strength to get in and out of the tub. It is going to be so hard when she can't anymore.

Throughout the evening, she was miserable. Evenings are always the worst time. She was hurting and tired and short of breath. We decided to increase her lasix in the afternoon and evening. I do feel it helped tonight. At the current time, she is breathing alright. Her legs continue to pain her. Getting out of bed is increasingly harder. Even moving her legs on the bed while laying down is difficult. I hope increasing her calcium will help a little. We can always hope.

I have to write a quick thank you to those who so generously donated freezer meals to our family. Thank you Sara for bringing them over. Thank you to Sis. Kirkman for helping pick up the kids from school. Thank you to everyone for your notes of encouragement. You all keep us going!! May you all have the richest blessings from heaven poured down on you tonight!! (0:

Tuesday February 16, 2010

Today has been another long day. Seems like that what we have anymore. But at least we had a little bit of sunshine. What a blessing every ray is these days! When Ashley woke this morning, she felt good enough, she wanted to eat. She came out into the living room for a little while. She was able to down two small hamburgers, some cheese, a popsicle, and a piece of bread. And the best part was, she didn't have diarrhea for nearly an hour after that.

Also on the good side, her face looked almost normal. The swelling around her eyes and in her chin was down. Her legs, well, that is another story. They were swollen and painful. She has continued to struggle with leg pain. I did talk to Dr. Etheridge this afternoon, via email, about this never-ending leg discomfort. She said PLE can cause clotting problems, so it is likely Ashley could get a blood clot in her legs. She feels part of the pain could be associated with low calcium levels. Her suggestion: have Ashley take in more calcium, particularly at bedtime. There isn't much we can do to prevent clots. Ashley already takes two aspirin every day. We can't increase that. I wouldn't anyway. Aspirin in itself is hard on the stomach. Her aspirin are coated, to help with the stomach discomfort they could cause. But she certainly doesn't need a higher dose.

Tonight was just miserable in every way. Ashley was tired and very uncomfortable. She was hungry and did attempt to eat, but then had to fight with diarrhea. She was severely out of breath. Every time she got out of bed to use the bathroom, and climbed back in bed, (a distance of only three steps), she would have to sit and pant to catch her breath again. Between the leg pain and the shortness of breath, Ashley was a wreck! She asked me tonight about increasing her lasix all the time now. We know it is time to do that when she can't breathe well anymore on her current dose. She takes 2.0 mL three times a day on a regular basis. We have been bumping her afternoon and evening dose to 2.5 mL, but it looks like we may have to go to 3.0 mL, which is the max dose she can take based on her weight. I will talk to Nancy about that tomorrow.

The one good part about tonight, Ashley fell asleep for almost an hour and a half. I kept checking on her. She looked so peaceful. For a short time, I know she wasn't suffering. Once she woke, she wasn't happy, but what a blessing to have a little rest from her burdens. I hope she will be able to sleep tonight. Last night was much better. She was up two times. That was also another blessing. The stupid diarrhea stayed at bay. I hope tonight will be equally good. We like to sleep! Ha ha ha! (0: Oh and on another note, I have another sick one. Preston was sick last week, and now Spencer is sick. Poor kid! He was home all day, but he was like his brother, very cautious about coming downstairs. We will keep praying the sickness won't go around the entire family. We have to keep our angel well!! This virus would kill her. Lots of prayers to be said!!

Monday February 15, 2010

It was a very rough night last night. Ashley was up and down several times with horrid diarrhea. She finally gave up trying to get back to sleep and turned on a movie just before 7:00. From the get go, she was exhausted. The pain in her legs was worse today. I don't know what to think about that. Nancy felt like it was most likely the protein losing enteropathy. She checked Ashley's legs when she came for clots, but didn't visibly see anything. The swelling is worse, but PLE can cause swelling. Ashley is prone to clots anyway, and laying down all the time increases her risks even more. We decided to increase the frequency and dose of her hydrocodone, hoping it might take the edge off. I do feel it helped to do that. The larger dose made Ashley sleepier, and it gave her an awful headache, but I was so thankful her legs weren't making her quite so miserable. It is getting harder and harder to get her up and down. I am fearful of what may come as she continues to lose the use of her legs. I do have a chair we can place in the bathtub, which she can sit on to take a shower. That may help when it comes to bath time. She hates sitting on that chair though. She would much rather be in the tub, soaking, which is why I haven't used it for a time. I don't think we may have a choice. If her legs are too weak and painful, she may have to use the chair again. And we can always sponge bath. Nancy brought me the supplies needed to do that, including a shampoo that doesn't have to be washed out. As for going to the bathroom, well, we will cross that bridge if we come to it.

Tonight was not any better. Ashley was so hungry, but when she tried to eat, the diarrhea attacked her with a vengence. She finally gave up and decided to leave her belly empty. Of course the up and down to use the restroom made her legs ache horribly. By bedtime, she was in terrible pain, and continues to be uncomfortable even now. Feeling breathless does not help matters. I hope it won't be such a long night. She can't take it. Frankly, it would be hard for me too. I am feeling weary and discouraged and very worried about my angel. I hope tomorrow might bring a little patch of sunshine into our dreary world.

Sunday February 14, 2010

Happy Valentine's Day everyone!! (0: What a great time to say I love you to the special people in your life. Whether that may be family, friends, neighbors, roommates.....there is always someone who needs to know how special they are. I hope everyone takes the opportunity to let their loved ones know how much they are appreciated and adored. You never know when someone you love will be taken from the earth. I take every chance I get, every second of the day, to let my angel know just how dear she is to me. Today was no exception. What a blessing it was to spend the day, not only with Ashley, but with my sons and darling husband too. (By the way, I take every chance to let them know I love them too!! They are every bit as important to me!!) Ashley had a rough morning, but when it was time for Sunday dinner, she wanted to come sit at the table. For almost half an hour, we sat as a family, laughing and talking and joking. It was wonderful!! What a great gift for Valentine's Day!! (0: Just to see her smile for a brief time, to eat food, was a miracle.

Our miracle soon came to an end. Ashley became very tired, and had to be wheeled back to her bed. She spent remainder of the evening, resting and sleeping. I can always tell when she feels rotten. She gets so emotional and sad. Her eyes lose their sparkle. These days, the sparkle is rarely ever there. But it is the sadness that kills me. I hate to see her looking so forlorn and not be able to do anything to fix it.

Ashley's legs were hurting badly tonight. I am going to ask Nancy tomorrow what we can do to help stop the pain in her legs. They are weak. That is one problem I can deal with, but the pain that Ashley feels when she tries to stand up, is unbearable. For some reason, the ibuprofen and hydrocodone don't seem to help. I know the legs are way more swollen as of late. Perhaps she may have clots in her legs. I don't know, but I do know it is killing Ashley to put any pressure on them. When she got up to the bathroom only a few minutes ago, she cried and cried because of the intense pain. I didn't know what to do for her. I offered to rub them, but she said it would only hurt worse. It could be that her low protein levels are causing her muscles to break down. I fear that. At one point, many years ago, Ashley developed peripheral neuropathy after starting a rhythm medication. She had pain very similar to what she has now. We had to stop that medicine and start another one. If her muscles are breaking down, there isn't a dang thing to be done about it. Not at this stage in the game. Thus her great suffering continues.

Today we had something very special to be grateful for. There are always things to be thankful for, but today, we were able to spend time as a complete family, time that for a few minutes felt almost normal. It was such a blessing!! And I have Jason by my side. I can do anything as long as I have him as my partner. I know this with all my heart!! I pray we survive another long week. I pray if Ashley remains with us for this week, her burdens will again be lifted enough, she can have a little bit of peace in her precious heart!!

Saturday February 13, 2010

Sorry for the lack of blog last night. I was exhausted in every sense of the word, and I didn't feel like writing, or thinking for that matter. It was nice to put everything in the back of my head. It was not a good day yesterday. Ashley felt desperately sick and weak. It didn't help that I felt tired myself. By the end of the evening, it was all I could do to drag myself to bed. She was miserable even then. Her ups and downs have been better since we have started a regular ativan regimen. But still, when she is so sick, every little thing upsets her. It takes lots of work to keep her calm. My poor angel!!

Today was another long day. I was worried how the day would go with the boys home, but they were good. We definitely had our moments, but they did exceptionally well under the circumstances. Ashley on the other hand, did not. She woke up feeling yucky from the get go. Her legs hurt. Her back hurt. Her poor stomach churned and gurgled angrily. Her legs were terribly swollen, as was her stomach and lower back. Her emotional state was very delicate. She was definitely working harder to breathe. When I bathed her, she was so exhausted by the time she got in the tub, she had to sit and catch her breath. Getting her out was almost impossible. Her legs are weak. They give out on her. That is what happened. It took me almost ten minutes to help her out of the tub. She would get up on her knees, try to stand, and then have to sit again and catch her breath. Of course, being so weak and falling back upset her and then she started sobbing. By the time the ordeal was over, she was desperately upset and out of breath. She had to sit in her wheelchair wrapped in towels until she felt strong enough to get on the bed, which was even more upsetting. It was horrible!!!! We may have to start sponge bathing her. But she absolutely HATES that.

Throughout the afternoon, she continued to struggle. Nothing made her comfortable. I felt helpless!! I feel like that all the time these days. I was sooooooooooo thankful Jason was able to come home tonight. Just having him home gives me comfort. Thankfully, by the time we put kids to bed, Ashley was feeling a little better. She requested that we come into the bedroom to say family prayer. I thought that was pretty darn cool!! (0: She even joked a little with her dad. It was nice to see a little bit of a smile. I know these days there isn't much to smile about.

It is hard to think about facing another week. Right now, I feel maxed. Jason is stretched so thin too. We all are. I don't get to go anywhere, and that gets hard. Jason is constantly making sacrifices, running errands, shopping, etc. (And he always does it without one word of complaint!! LOVE MY MAN!!) But you know what? I am honored to be able to serve my angel. I decided that earlier this week. It is such a privilege to be the one who gets to care for this precious daughter of God. I am learning so much. Even though some days get long and discouraging, the fact is, she is still here, and that is a blessing. Our family has become a team. None of us could do this alone. But together, we are unstoppable!! Our family is becoming what I always knew we could be!!! It is because of Ashley that we are growing. It is our own little miracle!!

Ok, better sign off now. I wish everyone a wonderful night!! (0:

Thursday February 11, 2010

Lately, I have been reading about Captain Moroni in the Book of Mormon. I don't think it is an accident that I fell on those chapters at this particular time. I have found great strength in reading about Moroni, as well as the other great Nephite leaders who lived during that era of time. They were in the midst of a terrible war with the Lamanites. Their every freedom was at stake. It was vital the Nephites stayed close to God in order to be protected from the vicious weapons of the Lamanites. Moroni and his chief captains worked tirelessly to protect and fortify the Nephites against their enemies. They spoke to the people with vigor, reminding them what was at stake. They prayed for them. They sought help from Alma, the high priest. They were righteous examples, in every way. They taught the people that with God, nothing was impossible. Even when all seemed lost, they won. I can't imagine what faith those great men had. I can't imagine how hard it would be to go on day after day and know that even when one battle was won, another would soon begin. And not just battles with enemies, but with their own people, whom they loved.

My point in telling this story is this: I feel like we are in the middle of a battlefield. The enemy is on all sides, closing in. Sometimes it feels like we are never going to succeed. The fight can't be won. Even if we make it through this battle, can we survive the next one? But you know what? There is always hope. No matter what, there is always a silver lining. I have believed that all my life. And I have been through some pretty rough storms. This trial we are going through now, though it seems never-ending, will not last forever. Time heals all wounds, or at least dulls the pain. I don't think the pain will ever go away. On the very bad days, which we have seen lots of lately, I can't help but think what life will be like when we don't have our angel anymore. It KILLS me inside. She is my life!! I am going to be so lost when she is gone. Lost, devastated!! We all will be for at time. But after the rain, the sun will come out again. I have to believe that. I have to believe that with God, nothing will be impossible. He will help us to survive.

Today was another bad day. Ashley looked awful all day long. She is always pale, but today, she looked ghostly white. Her face was horribly swollen. When she swells so much, her eyes become slits. You almost can't recognize her. Her stomach was distended. Her legs were huge. Her feet were huge. She was so tired. It was all she could do to get up to the bathroom. She didn't talk. She didn't smile. She didn't eat. She slept off and on all day long. I think she would have slept more, had the diarrhea been at bay. It is hard to rest when you have abdominal cramping. Dang diarrhea!!

Tonight, even though feeling very ill, she wanted to be out in the living room with the rest of the family. I was worried the energy level might be too much for her, but it was fine. I think she enjoyed the antics of the night. With three active brothers, there is always something amusing going on! (0: Before story and scripture time, she did return to the bedroom. I was so thankful Jason was here to help. The boys had lots to accomplish before they went to bed: homework, baths, valentines, etc. I could never have helped them all and taken care of Ashley. It would have stretched me so thin, and I was exhausted as it was. Constant care of a sick child takes lots of energy! The cool part is though, (don't worry Mom, I am eating), I have lost weight. I have been trying to lose several pounds for a long time now. I know the no sugar thing is helping, but the constant moving around is working in my favor too. I just hope it will stay off once life slows down a bit. (0:

Well, Ashley needs her mom now. I am so grateful for this time in my life, no matter how hard it is. One day at a time. Keep moving forward. That is what we will continue to do!! (0:

Wednesday February 10, 2010

I wish I could say today was a good day. I wish I could say there was something to smile about. Unfortunately, these days, there isn't much to be happy about. Ashley had another long, hard day. She was worse today, than she was yesterday. This morning, she tried to come out into the living room for a little bit. I think she lasted for 15 minutes before she was too tired and had to retire to the bedroom. Other than the trips up to the bathroom, she did not budge off the bed. She didn't sit up. She didn't eat. She didn't smile. She didn't talk. I spent most of the afternoon, sitting quietly on the bed beside her, watching her sleep, watching her breathe.

I kept Preston home from school again. He woke up coughing really bad. I think he might have been okay, but I wanted to give him one more day to rest. He has been so good about staying away from Ashley. We have one room, which we term our "family room", which is located upstairs above our garage. Up there is a TV and a couple of computers. We keep our gaming systems up there as well. It serves as the perfect place for a sick one to go. During the day, that is where Preston has been. We made him a special bed on the couch, which made him feel pretty darn special. I have been so proud of him. When he did come downstairs, he carried a washcloth with him, so when he coughed, he could cover his mouth. He is constantly washing or sanitizing his hands. Bless his heart, he has been super careful. I pray hard that we can keep the germs from Ashley. So far, so good.

We did receive a very special surprise this afternoon that brightened this gloomy day right up!! Just after 4:30, I heard a knock on the front door, and what did I find, but another HUGE care package from my dear friend, Sarah Badger. This is the third big box she has sent to our family. Every time, there are so many wonderful things inside. Today was no exception. They lent us some more of their wonderful movies. Ashley was thrilled about that!! (0: It is nice to have other options. She does watch a lot of movies, as it doesn't require much energy. Also in the box were some yummy valentine treats. These days, my kids freak out over candy and cookies. I stopped eating sugar, as it contributes to my anxiety, so these days, we don't have sweets around the house. Believe me, they were all thrilled to have some cookies. There was also a huge valentine card, signed by several of our dear friends in the Rupert area. Some of the best people in this world come from Rupert Idaho!!! I want them all to know just how much we miss them and love them. I cried and cried and cried. I was so touched that Sarah was able to get so many of our dearest friends to sign that card for Ashley. When she read the card, she smiled!! A real, from the heart smile!! Thank you Sarah for your thoughtfulness. I needed that today. It was such a hard day, and because of you, we all had a moment of sunshine!! Thanks to all the special people who signed the card for Ashley. You made her smile too!! Thank you all!!

Tuesday February 9, 2010

I just finished reading an entry by my lovely younger sister, in her blog, about two mothers in a store, and the horrible way they were treating their children. I have to agree with Tammy when she says it is heart breaking when you know parents don't cherish their children, when they treat their precious ones like vermon. You never know what life will throw at you. One day your child may be here with you, and the next, they are gone. I know of several families that have experienced this. It is so awful! I know there have been numerous times in the past when I have had a hard time being thankful for my kids. On those days when contention runs rampant, and energy seems to ooze from every pore and nothing you try to do to help the situation does, you want to pull your hair out. On those days, it is hard to be grateful for your kids. But at the same time, since Ashley has been so gravely ill, I have come to appreciate my kids in ways I never thought possible. I appreciate the bursts of energy, the door slamming, the fingerprints, the string cheese and fruit snack wrappers stuffed in the couch, the little potty drips around the toilet from little boys with bad aims, the mountains of bubbles left in the bathtub soap potions, etc. I could go on and on. What a blessing it is to have those precious ones, entrusted so lovingly into our care. And what a blessing it is to have healthy children. I never thought I would be grateful for a healthy appetite. I never thought I would be grateful for wrestling matches in the living room at scripture time. I never thought I would appreciate the ability to walk around the house or take a bath unassisted or even to brush one's own teeth. But when those abilities are gone, those moments taken, your perspective changes. Those things that once were so annoying are now blessings. I have learned to enjoy every day, every struggle, every silly moment with my family.

As for this day, it was hard and long. Ashley continues to suffer greatly. Her energy is gone. Her appetite waining. The diarrhea is a constant demon, lurking at every bend. Thankfully, the pain in her back and legs wasn't as severe today. Last night, when her breathing was so labored, she asked her dad for a blessing. Jason gave her one of the most beautiful blessings I have heard in a long time. Immediately after he closed the prayer, Ashley began to breathe more slowly. I felt her relax. She fell asleep shortly after and was only awake a couple of times in the night. Today she has continued to be blessed. Even though her burdens were still heavy, I felt more peace in her than I have for a while now. The things that were so awful yesterday, while still awful, didn't take her down as low as they did yesterday. I know Heavenly Father was with His precious daughter today. There is no question about it.

The other hard part about today was that Preston turned up sick. He had a sore throat and cough. I kept him home, and in isolation as much as possible. Jason was able to help me out with that. I took care of Ashley and he took care of Preston. I hope that will keep the germs from cross contaminating. I can't tell you what fear courses through my veins when I think of Ashley getting sick. It would kill her. Hands down, And it wouldn't be a nice way for her to go. If her lungs were compromised any more than they are now, she would be in serious trouble. I pray and pray that she won't have to die like that. I think it is interesting to note, in her blessing last night, Jason specifically said that she would be protected from illness. I was thinking how glad I was that we didn't have sickness in our home. How wrong I was! I know Jason was inspired. He knew Ashley needed that specific blessing. How grateful I am for priesthood blessings. They work!! (0:

So we keep pressing forward.....one day at a time!!!

Monday February 8, 2010

Today was another long, difficult day for Ashley. She was miserable from the very start. The pain in her back and legs continued. Her poor digestive system was in distress, which isn't anything new. Her swelling was about the same. This morning she was breathing alright, but by tonight, she was really working to breathe. I gave her some extra lasix with her evening meds, hoping her breathing would ease a bit. So far, she hasn't had any relief, but I hope she will have enough she can sleep. She has been so discouraged. Every little thing brought her to tears. Nancy suggested this afternoon that we keep her on a regular dose of ativan. She felt ativan would help with the sadness, as well as the anxiety. I do hope it might offer Ashley some relief. It is so hard to watch her cry!!!! I feel so darn helpless!!!

Tonight she felt sick enough, the only thing she wanted, the only source of comfort for her, was for me to sit with her and massage her arms and legs and back. I sat with her for a very long time. I think it was as comforting to me to be near her as it was for her to have me close. I really need to thank the wonderful staff at Idaho Watersports for allowing Jason to come home a little early tonight so I could be with my angel. They are preparing for their big boat show, and I know Jason is so vital at this time. I know it was a sacrifice to let him come home. Thanks to all you wonderful, caring, compassionate people!! I needed Jason tonight.

I had a couple of emails today that made me worry I have given some people the wrong impression of Ashley. I want everyone to know Ashley has never, ever once blamed Heavenly Father for her suffering, or think He is punishing her. She has never once been angry at Him. She knows this is her earthly trial, this is what is going to help her learn what she needs to learn to gain her eternal salvation. She doesn't sit day after day questioning the reason she is still here. Of course she wonders more so at the times when her pain is so unbearable. Who wouldn't? Many family and friends, watching her intense suffering, have also wondered why she has been allowed to remain here for so much longer than expected. We all thought she would be able to return to her heavenly home by now. Ashley knows what awaits her there, and she wants to be free from these earthly burdens. She wants to go home. Our angel has so much faith. She has always said from the beginning, Thy will be done. The day Jason gave her the blessing of release, we directly spoke to her about that very concept. She understood that it may not yet be her time to go, and she was okay with that. The hard part now is that she is so ready to go home. She desires that more than anything. Her faith is not weakening. She knows there is a plan and when the time is right, she will finally be free from the cares of this wicked world. I know she will be blessed to endure this final stretch of her life. I know it will every fiber of my being!!

Sunday February 7, 2010

I don't think there is anything more unbearable that watching a precious child suffer day after day, and not be able to offer any comfort or relief. Thus has been my plight over the past couple of days. Ashley has continued to suffer tremendously. The pain in her back and sides has been very intense and non-relenting. Even with three separate medications, she has had no relief. On top of the pain in her back, her legs have been very sore. The arm that once had the clot has also been paining her. She was asleep yesterday and in her sleep she cried out in pain because of her arm. I was worried she might be getting another clot in that arm, but it is not swollen, so I don't think that is the case. Truthfully, I think the aches are because of low protein and low oxygen levels. She has been very dusky. I am sure her O2 levels are desperately low. I don't think I have mentioned this in previous blogs, but she isn't wearing her oxygen anymore. Again, this decision was made by her and approved by the home health nurse. At this point, it is all about comfort and oxygen, while comforting to me, is not comforting to her. It dries out her nose and makes it bleed. She burns more energy fighting it than she gains from wearing it. That was a hard thing for me to let go. It killed me when we made the choice to leave it off all the time. I would turn it on and lay it by Ashley on the bed or on the floor next to the bed, hoping she might want to wear it. The other day, when Nancy was here, Norco came to refill the tank, and Nancy suggested I let them take it. They could have. But I just couldn't let it go. I wanted to keep the tank in Ashley's bedroom for a little bit longer. Sometimes accepting these decisions is so heart-wrenching!!!

Thankfully, even though very uncomfortable, Ashley was able to have a decent night last night. She was up only one time, but did have a hard time falling back to sleep. I had to give her another dose of pain medication so she could relax enough to go back to sleep. When that pain kicks in, she sobs in agony. It is awful!! I prayed and prayed and prayed that Heavenly Father would lift her burdens. I felt so desperate at that point, lying there in the darkness, listening to her painful cries!! I know my prayers were heard last night. Within a short time, her cries stopped. Her body relaxed. Her breathing slowed, and she was soon fast asleep. Oh what a blessing prayer is!!

Today started slowly. Ashley did not wake up until after 9:15. And when she did, she was in horrible pain again. I immediately pulled up her morning meds and gave her another dose of pain medication. It took well over an hour for her to feel a little relief. Eventually, Ashley felt good enough, she asked to take a bath. She woke up feeling very sweaty and sticky all over her body. She worries all the time that she is stinky. Today she was especially concerned because our wonderful friend Tasha Johns was coming over to cut our hair. I felt bad Tasha had to come on Sunday, but as it worked out, today was the best day for her and for us. Ashley has been wanting her hair trimmed for a long time, but hasn't felt like having it cut. She asked me the other night if we could ask Tasha to come over to the house, instead of us going to her salon. I asked Tasha, and she said it was no problem at all. Ashley felt good enough to come out into the kitchen for her haircut, and then she went right back to bed, where she stayed for the rest of the day. But at least she was clean and her hair looked darling!!! (0: Thank you Tasha for coming over to make us beautiful again!! Your talents are simply amazing!!!

Jason and I spent the rest of the day entertaining boys and trying hard to keep Ashley as comfortable as possible. There isn't much comfort to be had. She would lie in one position and then change to another, with no relief to her pain. Thankfully, she was able to eat a little turkey for dinner. Other than that, she didn't eat much. And as always, she had lots of diarrhea. Tonight her poor stomach is very swollen, as is her face. She is so discouraged and super emotional. She just wants to be done with this earth life. She wants her suffering and pain to end. Her faith is truly being tested to the full extent. Tonight I suggested she ask her father for a blessing, and her response was "Why? It won't do any good." I know it is hard for her. She knows Heavenly Father loves her, that He is watching over her, but she also knows He won't take her until it is her time to go. She had a blessing of release a very long time ago, and she is still here. I don't know how to help her keep the faith. When she suffers so, when she hurts so much, with no end in sight, no amount of words can lift her dampened spirits. She is the one who has to pray for comfort, for peace, for understanding. She was promised, in her patriarchal blessing, that if she asked, the Holy Ghost would be with her every hour of the day, lifting her burdens, helping her to have peace, but she would have to ask for that blessing. I haven't read her blessing with her for a very long time. Perhaps now is a good time to do so. How my angel needs to know, she is not alone!! Wonderful blessings are in store for her! Her pain will one day be taken and she will be in blissful happiness in a glorious world!! I know that will come.

Friday February 5, 2010

Tonight has been another long day. Ashley did not feel well at all. When she woke, she was puffy in her face and especially around her eyes. She was very pale. Her stomach and lower back looked huge. That is the place where she tends to retain fluid: her abdomen and back. On top of the swelling, she had horrid diarrhea all day long. She did try to eat, but everything went right through her system. It was not a good eating day in the slightest. The swelling in her lower back was bad enough, her back ached awfully bad. It was hurting last night, but today, the pain was so intense, I had to massage it several times. Her pain meds didn't touch it. Ibuprofen helped a little bit, but not much. She was so discouraged with it all!! I don't blame her. I have kept her on ibuprofen around the clock throughout the day, hoping for some relief. Unfortunately, not much relief came.

Tonight she has been having dizzy spells, where she describes her vision as double. I am sure her low oxygen levels contribute to the dizziness. I haven't put her on the oximeter for so long, I have no idea where her O2 levels are these days. I know she is low. Nancy told me not to put her on the oximeter, just so I don't freak out with how low she is. I think Nancy is very wise in this.

Other than that, not much has changed. She continues to decline. This afternoon, I was feeling so emotional. This journey has been such a roller coaster ride. When things look bad, you start preparing yourself for the worst. Then, the situation improves and for a moment, your heart feels a little relief. Then, the decline in health. Once again, the sadness consumes the soul. I felt so sad today. Ashley, bless her heart, this afternoon, was worrying and upset because she felt like it was unfair for her to go to heaven and be happy while we were stuck here in the earth, feeling sad and miserable. I am not kidding. That was why she was crying. She didn't want us to be in pain or to be sad. She wanted us to be at peace like she will be. I sat and cried with her for a long time. Jason came in and sat with us while we weeped. We assured her, we would be sad for a time, but not forever. There would come a time when we would be happy again. The hole will never go away. I have been told that before, but I know, in time, life can be happy. We will be alright. I told her Heavenly Father would bless us and take care of us so our pain would be bearable. That includes grandparents, aunts, uncles and cousins. Heavenly Father is a loving Father. He always takes care of his children. With every trial we endure, comes many blessings. We won't be left on the earth to suffer. It was a beautiful, faith boosting conversation. I was so thankful Jason and I were able to share that moment, together, with our angel.

And so we keep moving forward. What a blessing it is to know we are not alone!

Thursday February 4, 2010

Just a quick update. Ashley isn't well tonight, so I don't have much time to write. Today has been an awful day. All day long, her stomach churned and churned. She attempted to eat a few times, she was so hungry, but was unable to eat without having horrible diarrhea. Tonight she is super weak and her body aches all over. The swelling was so much worse, she asked for extra lasix with her evening meds. She is truly suffering in every way. As one would expect, she is desperately emotional. She wants to be done with this broken body. I don't know what to say to comfort her. There aren't any words. I feel completely and totally helpless. The only person who can lift her burdens is her Father in Heaven. I know He has been mindful of her every hour of every day. He will not abandon her now. I pray that His gentle loving comfort can be in her heart tonight.

Thursday February 4, 2010

I didn't post anything last night due to our circumstances. We actually got the boys to bed just after 9:30 which is really good for us. The cool part was: Jason and I had some time to sit and talk!! YEA!! We haven't had much time for that. Around dinnertime, I curled up on him, and within five minutes, had to leave because Ashley was having another diarrhea attack. These days, our time is few and far between. So I was happy to get a chance to talk. How cool was that!! In the mean time, Ashley was in the bedroom, not feeling good and not letting me know how sick she was feeling. By the time I went in and joined her, she was upset and crying, wanting her mom to be with her. It took me a while to calm her down.

Ashley is so ready to be done with everything. Last night, she was asking me what she had done wrong, that she was still on this earth. She was worried maybe she was being punished. I can't believe she would ever think that! My goodness! She wants to die. She wants her suffering to end. The past few days have been nothing but suffering. She lays there, day after day, to weak to do anything. She can't eat. She can't sleep. She needs constant assistance, even with the smallest tasks. I know it is discouraging! I know it, and what can I say? This situation isn't in our hands. There is a plan and a reason she is still here with us. I have no idea what that plan is, and I am terrified to pray about it. Part of me is so thankful she is still here, and the other part knows she is miserable and that a better life awaits her. I know it would be a blessing for her to go. I know it. But my heart has a hard time accepting it. We are all feeling the strain. Poor Jason is maxed at work and at home. I don't know how he keeps going on day after day. He never sleeps well. He isn't eating well. I don't either. The stress is constant and in our faces at all times. I am so grateful the boys have been happy lately. They seem to be holding up alright. What a blessing that is!! I did find out they are all doing well in school. Preston's amazing teacher wrote me an email after reading my past blog and made sure I knew he was doing fine in school. I was so thankful she took the time to let me know he is alright there. I know I don't get to spend time helping him like I want to. That helped my guilty conscience.

I won't go on much now. I will say Ashley is not feeling a bit good today. She is very weak and swollen once again. She didn't sleep well at all last night, and is exhausted. We will have quiet time this afternoon and hopefully she can rest a bit.

Thanks to everyone who sent us a new batch of freezer meals. I am so grateful for your sacrifices!! Thanks for all the uplifting notes of encouragement. They really help. Thanks to my wonderful brother and his family for the amazing care package they sent this past weekend. The toys for the boys were so cool! (0: Thanks to my wonderful friend Sarah Badger and her family for the huge care package they sent last week and all the emails. You guys ROCK!!! Much love to you all!!!! More to come!!

Tuesday February 2, 2010

I am not going to write much tonight. I don't feel well, and Ashley is not having a good night. We are both ready to turn in and get some rest.

Overall, it was an okay day. Ashley was very tired when she woke. Her body was aching and her stomach was giving her fits again. She wanted to come out into the living room for a little bit, which she did. Our wonderful social worker came for a visit. She wanted to see how things were going and if there was anything she could do for us. At this point, we are taking one day at a time. There isn't much anyone can do for us but pray. I enjoyed the visit with Kennette very much. These days, I don't have much interaction with anyone other than emails. It does get lonely. I don't mean to complain at all. I am so grateful for every second of time I have with Ashley. I know when her time comes, I will not have any regrets. I can truly say I did all I could do for her. I served her and loved her to the best of my ability. I know Jason can say the same. I do hope he won't have any regrets either. He sacrifices so much every day for her and for me. There isn't anything more he could do.

This afternoon, Ashley was just plain miserable. She was hungry but afraid to eat. She did finally break down and ate a little bit, but was hit by a massive diarrhea attack. It was so discouraging for her. I don't blame her one bit. What a terrible problem to deal with day after day after day! I can't offer her any relief. This problem isn't one that can be controlled with medication. It is directly related to her failing heart. I give her immodium, but really, it doesn't help much. I guess by giving it to her, I feel like I am doing something to help. It is such an awful feeling to not be able to offer Ashley any relief. I am a huge fixer. I like to fix the pain, and I can't and it is heart wrenching for me!!

So we keep moving forward. Only Heavenly Father knows what tomorrow will bring. (0: I pray it will be a better day.

Monday February 1, 2010

It was so nice to have my parents here for the weekend. I know they felt like they didn't help much, but they truly did. If anything, the emotional support was a blessing. When my parents are here, I feel like I am wrapped in a warm blanket. The problems don't seem so big. I know they will be blessed for taking the time to come and visit with all of us here.

Ashley didn't have such a great weekend. On Saturday night, she was up and down all night long with horrible diarrhea. She hadn't eaten hardly a thing on Saturday. She tried to eat her steak in the morning, but her stomach was so upset, she ate three bites and was finished. Over the course of the day, she was unable to eat. By dinnertime, she was so hungry she wanted her dad to get her a McDonald's kids meal. It wasn't the most healthy choice, but these days, we don't care if she eats healthy. Food is food, plain and simple. I am positive those greasy nuggets were what set her off. She took immodium before she ate them. She always reminds me to give it to her. I really thought she would be alright. Before bedtime, she didn't have very much diarrhea, but for some reason, about 1:00 it started and it didn't quit until after 6:00. We were both completely exhausted! Poor Jason didn't have a good night either. He hasn't been sleeping well for a very long time now. He wanted to get up and get the boys to church, but being up all night long as well, he was unable to get up. We did make sure to teach the boys their lessons so they didn't miss out on church altogether. I feel horrible we are not going to church right now, but we are doing the best we can. I know Heavenly Father knows we love him and we love church and we love the gospel. When our circumstances permit, we will get to go back. I can't wait to be in church again. I am so lost without it!!

So as you would imagine, Sunday was not a good day for Ashley. She was super emotional and didn't feel a bit good. She wasn't able to eat much. It wasn't that she wasn't hungry, she just hates eating and then having the food go right through her. She told me it was pointless to try to eat. It would just upset her stomach and give her diarrhea. I didn't know what to say to that. It is true. Food of any kind upsets her entire digestive system. She was able to eat better last week. That was such a blessing. But the tables are turning again. And it is so discouraging to my little angel!!

She was able to rest a fair amount over the course of the day. And thankfully we had a better night last night. I do so much better when I am rested, and I know Ashley does too. My parents chipped right in this morning and helped me get the boys ready for school. They also cleaned the house so I could take my shower and get ready for Nancy to come. It was nice to have help cleaning. I have to say though, Jason does a fine job helping me with housework. I never feel overwhelmed by the work that needs to be done. If something is not completed, he will step right in and finish it for me, whether it be vaccuuming, cleaning bathrooms, finishing dishes, supervising bath time, etc. What a trooper Jason is!! (0: And he never, EVER complains. Never. Not even when he is dead on his feet. He will come home and pitch right in. I love him so much!!

Ok, sorry, had to gush again. These days, I can't say enough wonderful things about my dear husband. He is my right hand. Well, this afternoon, Ashley was very tired. She slept before the boys came home and she slept after. While she and I were watching TV tonight, she fell asleep again while I stroked her face. She loves me to run my fingernails over her arms and face, just like her dad. She did attempt to eat a little bit, but only succeeded eating two pieces of string cheese. She didn't even down her popcicles. Tonight she had another episode of chest pain and irregular heartbeat. It hurt so badly, she started crying. I have to say, I am pretty darn proud of myself when those times happen. I didn't freak out. I talked calmly to her, and got her some pain meds. I sat with her until she felt better. Thankfully, it passed within a few minutes. She is super tired now, and thankfully the pain is gone and her breathing is alright again.

So we are off again on another roller coaster week!! I am just so grateful Ashley is alright at the moment. One day at a time. One hour at a time. One minute at a time. Faith in every footstep. Keep moving forward. That is what we will do.