Jessica turned 21!!! But is sick yet again!

First of all, I want to thank those of you who sent emails, e-cards and snail-mail birthday cards to Jessica. She has been so happy to receive them and asks a lot of questions about who it was that sent them to her: how old are their children, where to they live, do they have heart problems too? etc. There are several emails and e-cards that she hasn't seen yet because she has become quite ill - AGAIN.

Jessica's party on Saturday was a hit and she really enjoyed having people over... but she was quite blue and tired. The party was quite fast since I knew her stamina was very low. When it was time to open her gifts, Grandma Jensen sat beside her to help her since she seemed so blue and tired. I talked to my MIL later who told me that Jess was even shaking a little. But she had huge smiles for everyone and was so happy with not only the gifts but of course everyone who came.

Jess was quite tired and more weak the next few days and I rescheduled an appointment that she was supposed to go to on Monday because of it. The young women from our church came over Tuesday night and celebrated her birthday then. (Tues is their usual activity night). Jess was having a hard time being perky and happy even with cupcakes and pudding cake being served. Several times she leaned over on a pile of pillows on the couch and lay there. I gave her some morphine and got my camera out. She then remembered that she has a camera on her new DSi that she got for her birthday so she had a good time taking pictures of everyone. One of the leaders brought her 8 month-old baby, Malia, who Jessica just loved! The ladies and girls left after about an hour and Jess was in a lot of pain. She said her head and stomach hurt. I wasn't able to get her to bed until around 4:00am due to her pain and when she woke up the next day (1:30pm) she had such a bad migraine. I gave her tylenol and morphine, turned out the lights in her room, turned off her tv and made her have a nap. After sleeping a couple of hours, that usually does the trick. Not this time. By 4:00pm her tummy was hurting even worse and she threw up - a lot. Poor thing can't even sit up by herself during this horrible process so I have to try to sit by her and hold her up. I gave her a pill for nausea, more tylenol and morphine. After awhile she was able to go back to sleep and slept until close to 8:00pm. I didn't know what I should do so I woke her up and tried to get her to take in some fluids. She had to go potty and it was diarrhea. She was able to keep more fluids down, she perked up and ate some soup too. As I was getting her into bed at about 3:00am, her stomach started growling and I had to fix her more soup and crackers. She finally got to bed at about 4:30am. I was beat! I hadn't slept much during the day from worry and also taking care of her. I was hoping that she would be all better by the next day. - wrong!

The next day, Thurs, she woke up again with horrible tummy ache and head ache at 1:30pm. Again she had a nap after meds but this time I got her up at about 4:00pm. She was feeling better, and even smiled and laughed some. Karl was out of town most of the week but got home in the late afternoon and Jess was so happy to see him! Unfortunately twice tonight I sat with her in the bathroom while she tried to go poop - practically doubled over in pain and extremely blue and short of breath just trying to push. I thought she was constipated but no... it was runny and a strange color. She could be having another Ischemia attack or a bowel obstruction. Each time I help her in the bathroom (which is every time she goes) I look for blood. A very bad sign for her. The throwing up and diarrhea are both signs of Ischemia. I'm blaming it on the migraine she had but I can't be certain. She was just sick a few weeks ago with this same thing except it was worse last time. (Although I just don't know how she is going to feel tomorrow). Yesterday she was so sick that I started to have an anxiety attack. I just kept praying that she wouldn't die while Karl was out of town. Things are pretty tough over here a lot of the time.

Jess actually laughed and smiled a bit tonight and was able to eat some soup... but then she had the bowel thing after that. She was crying and asking "why me?" I got her calmed down and told her she needed to not cry but to save her energy to push when she needs to. I don't know why her. Sometimes I feel she has been through far more than anybody ever should and it keeps going and going.

The most amazing thing to me is how she keeps trying to be happy. She tries to keep herself busy to keep her mind off her pain. She amazes me. We talk a lot about death, what it is like, what her cousin, Marcus is doing... she dreams of Marcus every night and they go to Disneyland together. In the last few weeks she has told me that before going to Disney they sit on Marcus's bed and talk. Then they go and check on his parents and his brothers. Once they know everyone in Marcus's family is ok, they leave to go to Disneyland. Jessica told me the other day that when she is in heaven she will check on me every night before going to Disneyland with Marcus. I give her a hug to give to Marcus every night and every day she gives me a hug from him. She is no longer terrified of dying like she was 5 years ago when she had the lung bleeds. Of course I dare the bravest person to NOT be panicky when they are coughing up blood - choking and trying to catch their breath but can't. It is a horrible experience. So we are extremely grateful that she no longer deals with that. We are amazed that she stopped having lung bleeds. (Kudos to Hospice for helping us start the morphine therapy!) Jess has come a long way since then - we all have.

A dear, sweet online friend of mine just recently found out that her husband has cancer. This amazing friend has a lot of cancer in her family and watched her sister fight it many times throughout her life before passing away.... and she also cared for her mother while she died from cancer quite a few years ago. My friend is feeling deflated and kind of like God hates her. Well, who can blame her? I started looking for something that might help her (and myself!) and came upon this talk given by one of our LDS leaders. It's called: "God Loves and Helps All of His Children" Here are some passages from the talk:

"An... essential way to receive God's help is through prayer. We are commanded to pray to God, our Father, in the name of Jesus Christ. The admonition is, "Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened." ( Matthew 7:7-8) Heavenly Father answers all sincere prayers.

As the Lord's prophet, President Monson counsels: "At times there appears to be no light at the tunnel's end-no dawn to break the night's darkness. . We feel abandoned, heartbroken, alone. If you find yourself in such a situation, I plead with you to turn to our Heavenly Father in faith. He will lift you and guide you. He will not always take your afflictions from you, but He will comfort and lead you with love through whatever storm you face."

I remember standing over Jessica's hospital bed when she was 3 years old and wondering if she would survive the day... watching her little body in a coma, having seizures, hemorrhaging and fighting a blood infection. We were told by several specialists that she was in BAD shape and most likely would not survive the day. The only person Karl and I could turn to was God. He was in complete control. The doctors didn't know how to help her. Jessica didn't even seem to be inside her body at that time. She didn't look like herself in a coma. We had seen the tubes and wires everywhere when she had her first surgery (at the age of 5 months old) and we knew what she would look like post-surgery... but this was 4 days post surgery and all these complications were making us face the fact that she was indeed dying. It was completely up to the Lord. Our bishop met us at the hospital and counseled us, prayed with us and even cried with us. Finally when both Karl and I could completely and with all our hearts say "Thy will be done"... she started to turn around. The doctors were doing blood tests every 15 minutes and had an OR waiting for Jessica. The cardio-thoracic surgeon told us that they wouldn't take her to the OR until absolutely necessary. He was certain that if he opened her up to find the bleeder then it would cause all her scar tissue to start bleeding again and she would not survive the surgery. (During Jessica's heart surgery 4 days prior, her shunt which takes blood to the lungs was accidentally cut and she bled out for 8 minutes while they finished opening and placed her on the bypass machine. After that all her scar tissue (which was excessive) and other tissue hemorrhaged for quite some time and even after closing they had to reopen to stop some bleeders.) Jessica had been in critical condition and was finally improving when she started hemorrhaging again, having seizures (which was later found out was caused by a massive stroke affecting 5 areas of her brain) and they found the blood infection. Any one of those things could be life-threatening but all of them together.... certainly she would die. You can see the surgeon's hesitancy to perform another surgery! He kept telling us that the numbers didn't match. Jess had lost 1/3 of her blood volume in 4 hours and yet her blood pressure was becoming more stable and her blood count was ok. After about 4 - 5 hours the surgeon told us that he was not going to have to do surgery. He said, "A power far greater than ours saved your daughter today. We did nothing but stand here and watch a miracle."

About a week later Jessica was able to breathe on her own and came off the ventilator. She was blind and paralyzed from the stroke. She was so weak and couldn't take comfort in my holding her. After a difficult day at the hospital I took to my knees at home and prayed to the Lord to help her be comforted. I told Him that it wasn't fair for her to have to suffer through this alone. I have taken care of her through many illnesses, surgeries, therapy, procedures and through all this Jessica at least took comfort in my holding her. That day Jess was extremely agitated and seemed to be afraid of everything. Her vision seemed to be improving a tiny bit but only enough to scare her. I could only imagine this beautiful little girl who was attached to all the wires and tubes being held by someone who sounded like Mom, felt like Mom, smelled like Mom but looked like a monster! She even seemed to be afraid of her own hand and she practically threw herself off of the bed trying to get away from it. So with all my heart to told the Lord that no matter what, I would care for this precious child. I've taken care of her through it all and I'll take care of her blind for however long she is here... just please - help her to be comforted, I prayed. A wave of warmth and calmness engulfed my body and I ended my prayer in tears. I meditated for a few minutes and then called the hospital. The nurse told me that Jessica seemed to have calmed down in the last 10 minutes or so. I had called my sister before I had prayed and she came over and sat and talked with me. I had wrenched my back trying to hold Jess and comfort her for 8 hours that day and the nurse insisted that I stay home and get some rest. Karl was new at his job and had already used any sick time he had so he was working and then had to come home and sleep. He wouldn't be able to visit Jessica at the hospital until after work the next day. So I went went to bed after calling the hospital again and they said she had not only been calm but had even eaten something! I woke up in the middle of the night and called the hospital again. They said that she was doing so well they were considering moving her out of the ICU in the morning! Several of the tubes and wires had come out since my last phone call! The next morning she was in the process of being moved out of the ICU. She was in a double occupancy room and in the 2nd "bed" (crib). I didn't say anything as I walked into her room. She immediately turned her head and cried out, "Momma!" SHE COULD SEE ME! I ran across the room, picked her up and hugged her as we both cried. I stayed the whole day with her. She was still quite sick but she could see and was comforted by me being with her! When Karl arrived at the hospital she could recognize her Daddy, too. She still had a lot of problems with her vision but it was slowly returning. When she went home - 3 weeks post surgery - she still was mostly paralyzed on her left side, her vision was still iffy, her speech was no where near it used to be and she couldn't sit or crawl - much less walk. We had a LOT of therapy and pain to go through still but she did regain most of what was lost.

I have seen miracles and sometimes wonder why I am so privileged to have seen these in my own life and in my child's life. I know that sometimes the miracle isn't in the healing - but in the relief of the pain - the return to our loving Father above.

I am trying to read more uplifting literature and help myself and my family to more readily deal with the trials in our lives. I know God doesn't hate us... He loves us and wants to help us through our trials. We are here to learn and draw near unto Him. I want to feel the comfort of the Lord and help Jessica through her difficult times as well. (who just got up out of bed yet again at 5:20am)

I'm thankful for all of you - family and friends who help us through the difficult times and celebrate with us through the good ones. Please pray that Jessica's pain leaves her body so that she can sleep (at night, lol) and enjoy spending time with her brothers while they are home for the summer break. Pray that I get some sleep and 5 minutes to myself. lol

Life's a Bit Rough Around Here

But that's the way it goes. Miss Jess is in a lot of pain every day. The first thing she says to me when she wakes me us is: "Hi Mom. I feel HORRIBLE! and flops down onto my bed." I help her in the bathroom, make sure she's taken her carafate (meds for her tummy - has to be taken on an empty stomach) and give her some morphine. When it's time for her to eat, sometimes all she can eat is jello - or even just 1/2 of a small jello cup. She will drink some soda though. The last few days she has wanted a "Ham & Cheese Hot Pocket" so that's what she's had. She has eaten the whole thing or only left a bite or two. I'm so glad we have found something her tummy can handle. That is until she gets tired of them. She eats off and on during the day and will have a few snacks at night. I have to make sure she eats enough of her tummy will be in extra pain later. She gets morphine several times a day.... and she gets tylenol too.

Her sleeping is less than desirable... even if she gets to bed by 2:00am (which is early) then she will sometimes get up just a few hours later in pain and needing morphine and sometimes needing to eat. Sometimes she will go right back to sleep and sometimes she is up for several hours. Other times she may get very emotional and not even get to sleep until long after sunrise or even after Karl and the boys get off for the day - maybe 9:30am. It's getting to be hard work just to feed her and help her get her rest. I sometimes feel like I'm caring for a 130 lb, 20 yr old newborn with the schedule she has.

On top of all this my fibromyalgia has been acting up - as it usually does this time of year - and my poor body just can't figure out WHEN or HOW to sleep. I can't take a sleep aid because I have to be able to help her if/when she gets up. She takes enough sleep aids to put both of us out for 12 hours but that's another story. LOL!! Sometimes I stay up even after she is in bed because it is the only time I get where nobody is demanding my attention or needs something. I know it's not a good idea to do it too often - my body is really wanting to sleep right now, for instance - so I had better hurry.

The big news that I've been dreading posting is that Jessica really does have Ischemia of the bowels - both the GI doctor and the peds cardiologist checked out her CT scan. So in layman's terms... the artery that takes the blood to the gut is narrowing and she is getting less and less blood flow to that area. On top of that, due to her sturcture of her heart, she gets much less oxygen in her blood than normal so that's double trouble. Ischemia can cause pain (severe pain), diarrhea, constipation, an obstruction, necrosis and death. The only way to fix it is to do surgery and replace that section of the artery.... except that with Jess, that's not possible. Her whole artery system is going bad. Her whole bowel system is going too... She has to have 1 1/2 - 2 times the normal adult amount of Miralax just to keep her pooping every day. The only treatment possible is to give her morphine for the pain and more Miralax to keep her "going". The things we need to look for is vomiting and blood in her stools. These are signs that her intestines are necrotic and she probably won't survive more than a month or two. The GI doctor said that if that happens then we need to make the decision as to whether to take her to the hospital, call hospice or both. WHAT? I can't imagine her hanging on for a full 2 months while vomiting, etc. Karl and I have talked about it and if it comes to that point, we may have to discontinue all treatment except for pain relief. That would mean taking her off her heart meds too. Her previous pediatrician told me recently (when I told him about Jessica having 10,000 PVCs (arrhythmias) every day and her risk of ventricular tachycardia - he said, "that would be the best way for her to go, really"). He didn't say it in a mean way, he had been through all of Jessica's ups and downs including strokes, lung bleeds, etc. He meant it in a positive way. V-Tach would be fast. The GI thing..... not so much.

We have been chocking on this news. It just seems we get over on hurdle and we are faced with yet another way for her to die. I just don't want my baby to suffer. She has already been through so much... I just want her to be happy.


On the other hand, Jessica has been spending a LOT of time with Marcus. They go to Disneyland every night and ride all the best rides, have races as to who can eat their cotton candy the fastest and laugh and laugh. They even get to ride on Jessica's ride that she invented called "Genie's Magical Lamp". Several years ago Jess came up with the idea for this ride and has wanted Disney to make it. Every day Jessica gives me a hug from Marcus and I tell her to give him a hug back from me. She told me that every time she dreams about Marcus, it makes her sadness that he died go away a little bit more. I told her that I think it's awesome that she gets to spend so much time with him.... much more time than when he was alive. I also told her that Marcus is telling her that he is OK. {She has told me that the first few times she dreamed about him, she was crying and he asked her, "why are you crying?". She would tell him that it's because he died and that she missed him. He would then give her a big hug and smile and tell her that he was OK and that she didn't need to worry about him.} We talk about how he is having fun in heaven and he will be there for her when it's her turn to go home. Jess said that she isn't afraid at all when she is with Marcus. She even goes on the biggest roller coasters with him and doesn't get scared when in real life she is very afraid of heights and hates going on rides. I asked her if she has her oxygen on while going on the rides with Marcus and she said, "No! And I don't need my glasses either". She even said that she RUNS to him and they give each other a big hug. She says that everyone at Disney know her and Marcus and they let them go to the front of the lines and they don't have to pay either. LOL (it's just like Jess to be the center of attention and the center of every one's hearts!) Karen (my sister - Marcus's mom) told me that Marcus always was a daredevil and he loved to go on roller coasters so I'm sure he is enjoying his trips to Disneyland with Jessica too. Marcus missed his only opportunity to go to Disney when his band went but he was too sick with his cancer to go. Jess will never get to go to Disney - at least not while she's awake! LOL She is really glad for these dreams. I am so thankful for her dreams too. I miss Marcus. I miss Karen and her family too.

I am so grateful for my family and my friends. I can't get through this without you. It's been difficult lately with my being sickly and not being able to get out much. Seriously - sometimes I walk out to get the mail just so I can say that I went outside that day. I really need to try to go for walks... even short ones to try to get my mojo back. I have been making some cards and I did get to go to a card class last week. I am completely enjoying my new craft room that my dear, sweet husband built for me. I need to get it cleaned up a bit and post some pictures. You will be drooling! LOL

Thank you so much for stopping by and if you get a chance, head on over to my craft blog, FancyCrafty{Me} and oooohhh... and ahhhh... over my cards. :-P

Of course any prayers would be gladly accepted and appreciated.

((hugs))

Miss Jess..... and worries about death

This is not the easiest of subjects. I know that many of you may not be up to reading this post and that's ok.... but I do want to warn you that there are some good things in here as well as the difficult stuff, so if you skip it, you might miss out.

I don't write about a lot of the conversations that Jess and I have or some of the stuff that we deal with ... but then I got to thinking that maybe I should. Jess talks to me but who do I talk to? I talk to Karl about it sometimes but he gets emotional... afterall, it's his little girl too. So I thought I would bring it here. I have had to learn to be calm when we talk about these things. I don't mean that I am cold... I am very compassionate but I don't fall apart. I have wiped away tears and let Jess see that sometimes, but on occasion I fall apart later, either when I'm by myself or with Karl.... but usually after it's been building up for awhile.

Miss Jess has been having some rough nights. She has been emotional and having anxiety. Weird thing is that she shouldn't be PMSing so I can't blame it on that. She has been fixated on death though. She has been causally talking about what happens to a body after it's been dead for awhile. We talk briefly about that and then I will quickly bring up our beliefs about what happens to our spirit once we die. I talk about how beautiful heaven must be and how we won't have any pain. We talk about who we know who has died and that we will be able to see them again. We discuss about some of the kids that she has known who have died from either CHD or other illnesses. We talk about how they must be running and jumping, swinging and dancing as much as they want - things they couldn't do when they were sick and sometimes never had a chance to do here on earth. Sometimes she will even talk about famous people we would want to meet.... Jessica mostly brings up people like Moses or Noah. On occasion she will learn about a former president of the US or a queen of England from a long time ago and she will brighten up and say, "Hey! I can meet them when I go to heaven!" LOL. She LOVES the thought of meeting royalty. After all, she is at the level of a 6 - 8 yr old and what little girl doesn't want to meet - or even BE - a princess?!

Well, tonight she seemed to be doing ok but got up a few times. With her anxiety she picks... she picks her skin on her arms, face and her toenails. (she has many scars on her arms and face from picking sores) Our biggest concern is infection. She has no idea how easily and infection could go to her heart and she could get bacterial endocarditis. So I caught her picking her toenail and making it bleed (she could cause and ingrown toenail!). I was not happy and I scolded her. (I have to treat her with kid gloves most of the time.) I had had it. The last 3 nights in a row she had kept me up until after 3:30 am and I have someplace I need to go tomorrow. I'm tired of having to take naps during the day because I don't get much sleep at night and the last few posts here have been regarding my health... obviously I don't feel well as it is. Well... my scolding set her into tears. Big 'ol alligator tears. I had been chatting online with my sister and had to go care for her. *sigh* (this is the sister who's son has cancer and I haven't had a chance to talk to her lately)

Jess was crying and saying how sorry she was that she had picked her toes and she hoped I would forgive her. I apologized for snapping at her and I asked her if she would forgive me. She nodded her head yes. I told her that of course I forgive her. Then she started crying again and asked if Heavenly Father would forgive her too? I said of course He will. She started talking about how she just wanted to give Heavenly Father and Jesus big hugs and how she wished that they could come so that she could hug them. She also wanted to tell them that she was sorry... so we decided that she should pray to ask for forgiveness. She started out by asking for forgiveness and telling Heavenly Father that she loved him. She then asked Him to forgive everyone, even if they didn't say they were sorry, but to please forgive them anyway. She is crying through her whole prayer and I was watching her... (I know, shame on me for not closing my eyes) I just looked at her profile, tears coming from her closed eyes, arms folded, purple lips and nose as she lay in bed pleading to her Father in Heaven to forgive her. I saw such an innocent, beautiful, angelic child who wanted to be perfect in every way. She went on to bless her cousin Marcus and our next-door neighbor, Donna, that they would be able to fight their cancers and to please not let them die too soon. "I will really miss them and I love them", she pleaded. She must have told Heavenly Father at least 5 or 6 times in her prayer that she loved him and Jesus too.

After her prayer was over I told her that Aunt Karen said that Marcus was doing pretty well. Jess said that she wished that Marcus's cancer was gone! I agreed with her. Then she said that she hated that Donna's cancer was back. "What if she dies?" I told her that we would miss her but we will always love her. The tears started back up and she said that Donna is the best neighbor friend that she has ever had! I agreed but told her that even once somebody dies, our love for them doesn't stop and we carry their memories with us always. We started talking about my grandpa H who's chair is in Jessica's room. She says that she likes sitting in it because she can feel his spirit holding her. My grandpa died before Jess was born but she has seen pictures of him and we talk about him and my grandma. So we started talking about great-grandpa and great-grandma... I told her some great stories about them and then we talked about my other grandma T (who is still alive) and her brother (who died just a couple of years ago). We have video of when Jess was about 3 yrs old and we got to visit with my grandma T and Uncle Melvin and Aunt Ada. I told her stories of how Uncle Melvin would tease my grandma T. He always called her "sis". Jessica started to laugh at some of the stories. I told her some stories of times I spent with my grandma and grandpa H. Then we talked a bit about an adventure we are going to have on Tuesday. We have to have some electrical work done at our house in order to continue the work on enclosing the carport so the power will be shut off most of the day on Tuesday. The boys will start school that day so I will take Jess out to grandma and grandpa Jensen's house for the day. I told her that I have wonderful memories of spending time with my grandparents and now it's her turn to make her memories with her grandparents. She smiled and liked that idea. She was FINALLY calm. She said that maybe she just needed to get all that out. I think I have to agree. I guess she has been so worried about herself dying, her cousin dying and even our next-door neighbor (who's chances of surviving 2 more years are only 30% - but Jess doesn't know that)... Jess just needed to get all that anxiety out.

In fact, a few days ago, she has asked me several times if someone can die from ulcers. She knows that she has ulcers and that's why she has to take the carafate. I told her that no, people don't die from ulcers. She then asked me if people can die from coughing up blood. Now Jessica hasn't coughed up blood for a couple of months but sometimes she can feel and taste blood in her throat, so I'm sure she is scared. I said that it would have to be a LOT of blood for someone to die. She asked, "like a cup?" NO, more than that. Like a bowl? No, more than that. I put my arms out really wide and said, "at least THIS much blood". "Like a RIVER?" I smiled. Yes, like a river. She knows she has never coughed up THAT much blood... not like a river, so she seemed to be ok with that. At least for a couple of days.

So here I am, typing at almost 3:00am about my daughter who is such a little girl in so many ways... who at her age should be dating, going to college and planning her future... but instead is playing with barbies, dreaming of princes and princesses, and worried about dying. I wish I could take that last part away from her. I wish I could take it away from all children who have life-threatening illnesses. I wish us parents didn't have to worry and watch our children worry.... and miss out on many of the "normal" things in life, not to mention the medical stuff they go through.

But on the other hand.... the faith my daughter has is amazing. She was truly sent to me to teach me and inspire me. I have never prayed harder than when she was hurting or near death. I have seen miracles. Another thing that Jessica brought up as she was having her anxiety, was that there are so many bad things out there. I told her that they would not come in here (meaning our home). I asked her who it was that made her live when she almost died when she was three? "Father". Who was it who gave you your eyesight back when you were blind? "Father." Who gave you back your strength and helped you learn to walk and everything again when you were paralyzed? "Father" Now don't you think that your Father in Heaven can bless you and protect you now? She nodded. "Of course He can. We just need to have faith and not worry about all that bad stuff." I reminded her that Mommy and Daddy do everything possible to protect our children. I reminded her that Heavenly Father blessed her with parents who love her more than life itself. He blessed her with brothers and grandparents and aunts and uncles and cousins who love her too. He also blessed her that people all around the world know about her and pray for her all the time.

We are truly blessed. Even at 3:20 am and are not sure if we will ever get to sleep tonight. Jess just got up AGAIN. She was looking for her CD player. *sigh*

Is there an anesthesiologist in the house?

Anybody?

Anybody?

Please?

Rain, Rain, Go Away!!!

Ok, it's not REAL rain I'm talking about, it's the metaphorical rain as in: "When it rains, it pours" type of rain. Here is the short version of what is going on here today:

Jessica not only has strep but is coughing and congested. She has a low-grade fever and sounds like she is talking while holding her nose. She is quite miserable and has been feeling nauseated but I finally got her to drink some sprite and take a couple of popcicles. Once the fever came down a bit she was able to eat some soup. She is now playing her gamecube. She didn't get to sleep last night until 4am.

Austin and Brandon have been coughing too. Austin had an asthma attack on his way home from school today and could hardly breathe and was gasping for air while holding his head because it hurt so much. I gave him a breathing treatment, tylenol and a cool washcloth. He is breathing ok now and resting.

It's HOT here in Southern Arizona. It was 86° yesterday and expected to be into the 90's by Monday. That's actually 20° above normal for this time of year. We are sick, sweaty and grumpy. Stay clear of our house if you can! LOL! I may have to have Karl shut down the heater so he can hook up the cooler this weekend. We don't usually have to do that until late April. Just watch... as soon as we do it, the weather will turn again and it will get cold and we'll freeze. Ah, well... such is life.

What a week! And it's barely Tuesday? - No wait, it is now early Wednesday!

I knew this week was going to be a rough. Karl had to go to Phoenix for the week and I'm THE parent. Jessica is having a lot of pain and breathing issues tonight so I'm up with her and I will have to get up at 7:00am to get the boys off to school. Austin can walk to school because it is close enough but I have to drive Brandon. I took Jessica to our support group, Tu Nidito, yesterday evening and I guess it wore her out. It wore me out too! But it was worth it. Jess had such a good time and she hasn't been out of the house in quite awhile. I was up pretty late last night, had to get up and drive boys to school early this morning and just as I was about to walk out the door, Jessica got up. As a treat I brought home pancakes and bacon from McDonald's for her and she finally went back to sleep at about 10am... then I crawled back to bed and was woken up several times by the phone and finally it was time for me to go out to pick up kids from school, go grocery shopping while Jessica's aide was here and I pretty much over-did it myself. I had hurt my back - pulled a muscle - over the weekend and have been in pain. OUCH.

I thought I had gotten Jessica all settled into bed awhile ago and told her I needed to go have a hot shower to help my back feel better. Well, before I was able to have my shower she was at my door crying from pain. I helped her back to bed and gave her some morphine. It was time for her to have her carafate (for her gastritis and ulcers) so I gave it to her. (I just hope the meds don't cancel each other out. I didn't want to give her morphine on an empty stomach but the carafate has to be given on an empty stomach.) Then Jess started crying about how it's hard on her for daddy to be gone. I tried to cheer her up by telling her that daddy will be home in 3 days... but since it was after midnight we could consider today to be Wednesday so now daddy will be back in just 2 days! She didn't fall for that and wanted us to have a special prayer. She was just sobbing by this point. I said that we should also have a prayer to help her be calm. So she decided to say the prayer for her dad to be safe and wanted me to say a prayer for her. (I guess she wanted two separate prayers) I prayed that her heart would be filled with comfort and love... that she would be able to rest and feel better and that her pain would subside. After calming down and being comforted by the prayers she was coughing and asked for another breathing treatment. I thought it might be too soon since her last one and got her tucked into bed. I went and had my hot shower only to come out and hear her still doing some coughing and clearing her throat like she does when she is having some difficulty breathing. I gave her a breathing treatment and now since it has been over an hour since taking her carafate she is eating a bagel. Now she wants more to eat. lol... I told her one more snack and that's it. It's after 2:00am and I have to be up at 5. I have to take Brandon and Austin to doctor's appointments tomorrow afternoon (when Jessica's aide is here), then a new Creative Memories customer is coming over to look at a new digital storybook made through CM, and I have another group thing to go to in the evening. Calgon, take me away!!

For Crying Out Loud

Literally.... Poor Jess got so offended by something someone said that she was crying buckets of tears tonight. She even started that type of crying where she was doing the "catch-up" breathing... dont know how else to put it. She started coughing from the crying and it started sounding like the kind of cough she does when she coughs up blood..... fortunately no blood tonight, *whew*. Karl and I took turns sitting with her and helping her calm down. She takes everything to heart.

The person who offended her has no idea that he/she said anything wrong. This person doesn't realize how sensitive Jess is and how much she truly is a little girl. Hopefully we can get things straightened out tomorrow. I know this person had no intentions of hurting Jessica's feelings, I think they just got foot-in-mouth syndrome.

It's about 1:40am and I just got Miss Jess back into bed. Hopefully she will be able to sleep now. She has her favorite two barbies in her bed and is watching Barbie as the Princess and the Pauper. She really is a little, innocent girl.

Here we go again

2:45am and still up. I had Jess all ready for bed and then a thunderstorm popped up and she was too scared to sleep. After the storm was over her meds had worn off and couldn't sleep...... so I just gave her more meds and am hoping she goes to sleep so I can.

I hate monsoons......

zombie.......

It's nearly 3:45am and what am I doing up??? Trying to get Miss Jess to settle in to sleep. I absolutely HATE this. No wonder I'm grouchy and my house is a mess, I don't get much sleep. Jess must be part vampire or just nocturnal... poor kid can't sleep. Well, let's put it this way. Sometimes she can't sleep, other times she WON'T sleep. This girl has taken enough drugs (yes, doctor prescribed) to take down a 400 lb person, yet this little 126 pounder is going strong. I believe she stayed awake (crying and feeling sorry for herself - and throwing a temper tantrum) during the peak time that the meds were working so she missed her opportunity for the meds to work well.

We are supposed to see the pulmonary doctor at 10:00 am but I don't know how we will make it now. We rescheduled the last appointment because she had just gotten out of the hospital and was sleeping. I guess the interns, or whoever, didn't let the pulmonary doc know she had been admitted for CHF so she could see Jess while she was there. Oh well.... she has finished eating her snack so I had better see if I can get her tucked in. Again.