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!!