Saturday 5/31/08

Today was a pretty good day. We all went to see Mia this morning. Jessica didn't ride this time, but just played with her on the ground some, which means Jessica's basically in one spot while Mia does all the work and all the running.

Jessica has had plans of working at the stables this summer in exchange for riding lessons. The stable owner has come up with a list of things for Jessica to do. But, at this point, we don't know if she'll be able to, unless it's just the easy work, like painting posts - while she sits.

Jessica hung around the house this afternoon and worked on schoolwork some. Then we went out to dinner with my parents for our celebration dinner at a Japanese steakhouse. Jessica did pretty good today, but now has a sore throat and a little tired.

Friday 5/30/08

Today was a good day for the most part. Jessica stayed in and worked on homework this morning while Steve and I went to Matthew's elementary school graduation. My parents came over for a visit this afternoon, and my mom, Jessica and I went to Target to look at swimsuits. We waited on Steve to get home from work with the plan of all of us going out to eat dinner, but Jessica had a bad headache and ended up on the couch with a heating pad. Taco Bell take-out works too.

Thursday 5/29/08

My parents came over today to be with Jessica while I was at work. She's really doing good today, but I know she likes the company. She worked on school work. We're down to the wire to get it all done. We may only get the homebound teacher one more day (2 hours), and we possibly have 3 more finals to do. It will be nice when school's out and summer's here!!

Jessica is having a good day today! She has been having more good days it seems. But we just had to break her heart and tell her that she couldn't go on the youth group trip to Florida in a week and a half, and then email the youth pastor to cancel her trip. She really wanted to go. She's been holding out hoping and thinking she'd be able to go. But it's a full schedule and so far away! I couldn't go get her or get there quickly to take care of her. And she's better if her activity is limited, and I know they'll stay busy with lots of activities, late nights and early morning praise and worship on the beach, etc. I hate that she'll miss it!...

Wednesday 5/28/08

Today was a pretty good day. Jessica woke me up over the intercom at 2:30a.m. this morning wanting an ibuprofen for her sore throat. But the day hasn't been bad. I've had trouble getting her to focus on studying for her tests/finals before the homebound teacher got here, but maybe the lack of focus is because she is tired.

Tuesday 5/27/08

Today wasn't a good day. Jessica didn't feel good today - tired, sore throat, head hurting a little, fingers hurting when she was trying to write her schoolwork, etc.

We didn't do any schoolwork over the holiday weekend, so I was trying to push through some of it today. My parents came over with us to help out. But Jessica had to lay down after a little while, and took about an hour and a half nap.

Her homebound teacher came at 4:00, but left earlier than her alotted 2 hours (only stayed an hour) because Jessica wasn't feeling well. We got a few things done and turned in today, but need to be prepared for the teacher to bring finals the next time she comes. School is out next Wednesday.

We probably did too much over the holiday weekend, or maybe the little bit that Jessica rode Mia yesterday was too much...

Monday 5/26/08

Today was a good day.

Jessica and Steve went to Tractor Supply for a few supplies needed for Mia. Then we all went out to see her. Jessica rode her, but just probably about six times walking or trotting around the paddock. So, not much. Then, while the guys took their fishing poles down to the pond (and, yes, they each caught a brem), Jessica and I gave Mia her first bath since we've had her. Or, a partial bath at least.

We came home, ate lunch, and went to look at a house (with land) that we've been thinking about. And then we went to the movies - Narnia, Prince Caspian. (It was good.)

Jessica was tired and said her throat hurt, but she held up pretty good.

Sunday 5/25/08

Today was an ok day. Jessica slept in while we went to Sunday School at church. She was a little tired this afternoon but doing ok, and rested while watching tv. She just hung around the house until late afternoon. Then we all went to Lake Sylvia (we won't let Steve pick the lake next time!) for a cookout and fishing. By the time we got there, Jessica had a bad headache, so I roasted her hot dog for her. But she perked up and roasted her own marshmallow. And then went fishing, until we couldn't stand the gnats any more! Jessica again had a headache on the way home to the point that she thought she was going to get sick. She went to bed with the heating pad on her head.

Saturday 5/24/08

Today's been a good day! Jessica has seemed normal today and more active.

She played Playstation with Matthew. She helped keep the dogs calm while Steve and Matthew were bathing them. And we all went out to dinner tonight with my parents and my brother's family. And then stopped by to see Mia just to groom her.

Jessica said she has been a little tired today, but from outward appearances she seems really good.

Friday 5/23/08

Jessica's had 2 good days in a row. Today both of the kids had an orthodontist appointment, and then my parents met us at U.S. Pizza for lunch. Then we decided to try taking Jessica shopping. (Jessica (and my mom) loves to shop and hasn't been able to.) My dad and Matthew went to Chuck E Cheese, and my mom and Jessica and I went to JCPenneys. We debated about getting a wheelchair to use, but she wouldn't use one where she might be seen. So we thought if we just went to one store where there wasn't much walking involved and didn't stay too long, maybe she'd be ok. I think the getting out and doing something she likes (along with getting some things she liked) does her good.

Thursday 5/22/08

Today's been a pretty good day. Jessica has seemed to feel better today. She is livelier. We worked on school work for the most part today. The homebound teacher should be here soon.

I got an email today from Dr. A that we saw last week. Her husband is an Infectious Disease doctor and she has consulted him also, so it's like we got two for one! She gave some different options that we can try - I guess after the saliva test comes back. So, that is encouraging.

Wednesday 5/21/08

I went to work today for my one day this week. (I'm on leave of absence, but asked to come in one day a week for the important things, like getting bills paid and payroll done.)

Jessica was tired today, but better than yesterday. At about 9:45a.m., I got a text message from her saying "My throat hurts bad and im still a little tired. Im laying in bed reading." My parents came over to be with her and help out. My mom said she looked tired and that you could tell she felt worse than the weekend. She took a short nap this afternoon.

But she did work on her homework some, and she and my mom cut out a pattern for a new horse blanket for Mia. Steve would like for us to go see him play softball with his firm tonight, but Jessica's probably not quite up to it, so the kids and I will stay home.

Tuesday 5/20/08

Today was so-so. Jessica was able to do some homework today, and we took our lunch outside in the sunshine. While she was writing notes from her P.E. book, she complained of her fingers hurting. She has been tired, and has had a pretty bad headache. She was able to get in about an hour nap before her teacher got here.

Jessica's finally got her civics grade up - to a B - and that's still with missing 2 tests/quizzes and 3 homework worksheets.

Monday 5/19/08

Today wasn't that good of day. Jessica was dragging most of the day. I had trouble getting her to read her P.E. book. And then in the early afternoon, she said she felt awful, and that feeling lasted the rest of the day - really tired and head hurting bad. She took at least a 2 hour nap.

Activity level: 4/10 Feel-good-level: 5/10

Sunday 5/18/08

Jessica said she didn't sleep well last night - between the noisy neighbors in the hotel, and her daddy snoring. But I also woke up once with Steve snoring on one side of me, and Jessica snoring in the bed next to me on the other side. Jessica and I slept in, while Steve and Matthew got up at 6:00a.m. and went fishing. Then we went to eat with my parents, and we all went fishing again. Jessica slept on the way home, and then we stopped by to see Mia. She even got on and rode for just a little bit. It was something she's been wanting to do, so it was one of those things that may be testing the limits, but was going to be done.

We got home at 6:00p.m., and Jessica got on her jammies and has been resting since.

The lake was up 25 feet above flood level with trees, lightposts, etc. mostly under water that shouldn't have been. A sign at a boat ramp that said 300 feet to the water was at the water. This weekend was a fun get-away. We always enjoy the water! While Jessica and I are relaxing and glad to be home, the boys have gone back out to a friend's pond to fish again and see if they can catch something this time.

Jessica's throat is starting to hurt...

Saturday 5/17/08

Earlier in the week we'd been asked to join my parents this weekend at Greers Ferry Lake. After much debate, we decided to go! Thought it would be a good (and needed) outing for Jessica - so she could see something other than our house, the backyard, and the doctors' offices. We went just to hang out at the lake and do a little fishing.

She did pretty good. On our short walk to the edge of the lake, she handed me her fishing pole to carry for her, and I noticed that she was breathing heavy. And after standing for a little while, she was looking for a spot to sit because her legs were tired. But for the most part, she held up pretty well.

Friday 5/16/08

I went to a Reading Carnival this morning at Matthew's school, and again this afternoon for a little bit. When I got back home this morning, at 10:15, Jessica was in bed. Today wasn't as good of day. She was really tired. But then I made our lunch, and she was wanting to get out, so we took our lunch out in the backyard in the sunshine. And had the dogs to visit with. It was a beautiful day. Time & Temperature said it was 65, but in the sunshine it felt a lot hotter! I think the sunshine did her good!

When I was at school today, I saw one of Jessica's friends who asked me: How is Jessica? What does she have? How bad is it?... I'm not sure what the best answer is for those questions.

Jessica wants and needs to get out. But when I asked her where she would want to go, she just chose to go see Mia. So, tomorrow...

Thursday 5/15/08

Dr. A, the doctor we saw yesterday, called me this morning. She had obviously looked through Jessica's records and she said she'd done some research, and she believes Jessica has Chronic Fatigue Syndrome (CFS). Most of the criteria for CFS says fatigue for 6 months, and we're in our 5th month, so the doctor said let's wait another month to be sure, and maybe she'll get better within that next month.

The primary symptoms for CFS as reported from the Center for Disease Control are:

• difficulties with memory and concentration
• problems with sleep
• persistent muscle pain
• joint pain (without redness or swelling)
• headaches
• tender lymph nodes
• increased malaise (fatigue and sickness) following exertion
• sore throat

Dr. A wants us to do the saliva test to check her adrenal functions, saying this was still a symptom in CFS. She would then give her a low dose of hydrocortisone to boost her adrenals to produce their own steroids as they're supposed to.

She still wants to do the allergy testing, saying that allergy symptoms overlap. But we're not wanting to do that. (See yesterday.)

She said herbs can be given to improve the immune system. But she would only give one thing at a time so we'd know what was working, and wants to start with the hydrocortisone.

Dr. A did suggest that Jessica try to do a little exercise each day to prevent atrophy or the loss of muscle. We have cut back on Jessica doing much of anything because it seemed if she did much of anything, she'd be down the next day.

She also said that anti-depressants are used to treat CFS. Not for depression but for the illness. As Dr. A said (and it's nice to hear someone notice this), Jessica is not depressed. Jessica is bright and has hope!

In fact, at church last night, Matthew was given a new Bible, and Jessica started flipping through randomly looking for hopeful messages. She then looked up heal and healed in the index, and ended up with this: "Jesus turned and saw her. "Take heart, daughter," he said, "your faith has healed you." And the woman was healed from that moment." (Matthew 9:22)

Added at 5:00p.m.: Jessica's had a pretty good day! I asked her if she felt normal today, and she said she didn't know. I think she's forgotten what normal is. She's seemed almost normal today to me. Though she did say late this afternoon that she's tired, her head hurts and her throat hurts.

The homebound teacher is here now, and she's doing wonders to get her caught up!

Good news - The dance team teacher has agreed to let Jessica do book work for the rest of her P.E. credit for the year, so she won't have to make it up. She sent home a physical education book (from 1953!) without questions, and Jessica is to outline 5 chapters.

Wednesday 5/14/08

We went to the doctor today that supposedly deals with fatigue and was referred to us by a friend. The doctor was nice, took time with us, and listened and had an open mind, unlike the other doctors. She said doctors (including herself evidently) don't like to diagnose Chronic Fatigue Syndrome (CFS) because there aren't any treatment options for it. I told her about the anti-viral and the Florinef that is supposed to treat CFS. She (as others) asked why an anti-viral when the virus is gone now? (I'm not sure I know that answer.) And she said the Florinef is a steroid (I don't know that I knew that) and she didn't like giving children steroids or anyone for a long period of time because of the side effects. She did say that she would research it though. She wondered if there were any clinical studies done on it.

But first she wanted to do allergy testing on Jessica saying that there are allergies that just cause fatigue. I haven't agreed to this. Jessica's never had allergies. (Matthew, my son, does, but not Jessica.) And why would it be allergies if it started from mono?

And the other thing she wants to do before diagnosing is the saliva test. The nurse said it doesn't test for thyroid anymore, but it tests for andrenal, hormones, and also allergies to things like milk, gluten, and wheat. But she really wants to do this test to test for Adrenal Fatigue. She said your adrenal glands can get stressed, and could get stressed from an illness like mono. We will do the saliva test, but were told not to start that until Sunday, so it doesn't sit in someone's warehouse over the weekend and mess up the test results. But the results may not get back to the doctor for 2-4 weeks.

She also mentioned that even though the EBV test is negative, the symptoms from it can last for months. And said her daughter had mono for a year! And so she said an option is to wait.... longer.

I think Jessica is ready to head to Texas to see that doctor at the Fatigue Center!

Jessica has been better the last few days. She was better during spring break in March too though.

I emailed the school counselor and Jessica's dance team (p.e. credit) teacher and asked what we're to do about that class since there's no "homework" and would she get credit? The counselor had suggested to the teacher that she come up with some book work to get credit, and the teacher has suggested that Jessica could just take 9 weeks of PE next year to make it up. Not the answer we wanted to hear!

Added at 10:00p.m.: Today was a pretty good day. Jessica went to the doctor, went out to lunch, went to Matthew's graduation at church, and we stopped by Mia's to pick up her saddle blanket. And Jessica held up pretty well.

Tuesday 5/13/08

Today's been a pretty good day. Jessica woke up early (8:00a.m.) because of the thunder. She was tired and laid down to take a nap, but didn't sleep long. We've worked on homework today, and the homebound teacher is here now.

Monday 5/12/08

Today wasn't that good of a day. Jessica woke up really tired and her throat hurt. It seems she probably did too much this weekend. My parents came over. My mom said Jessica came down for lunch and was holding her head up, and looked washed out. But she also said she wasn't as bad as she has seen her. Jessica got better as the day went on, and she worked on homework. And finished her last sewing project!

She's tired and has a headache, but watching tv.

Tomorrow starts my leave of absence at work...