Saturday 10/11/08

We actually went to the state fair today. Jessica held up pretty well too! My parents were ready for a phone call in case they needed to come pick up Jessica and I so that Steve and Matthew could stay; Jessica thought about it several times, but held out. We had fun. The kids got to ride a few rides and play a few games - and we all played the shoot-the-water-gun-into-the-clown's-mouth game - Matthew won! And they tried to talk us into playing the game where you can win a real bunny rabbit - a friend for Pumpkin - but I think one rabbit in the house is enough! And we ate a ton of junk food - roasted turkey leg, cotton candy, caramel apple, funnel cake and lemonade shake-up - Isn't that what the fair's all about? Last week Jessica had said that she didn't want to go because of all of the walking, didn't think she could, but she really wanted to be able to go. The heat was a bit much, and we looked for shade and places to sit every now and then. And her legs were tired. But she stayed. And we were pleasantly surprised that she held up as well as she did.

She even came home and baked horse cookies (oats, carrots, apples, molasses...) and went to see Mia (our horse), and she got to ride. It's been a full day! A good day.

Friday 10/10/08

I was just counting my blessings the other day that I hadn't heard from Jessica in the middle of the night in quite a while! And then, last night at midnight she called - "I can't sleep." "A peanut butter and jelly sandwich sounds good." If it will help her get to sleep so she'll have a good day following, I was happy to make it - even though she was more awake than I was.

Jessica stayed in her robe until noon today. She may have been moving slow and have a sore throat, but she's not too bad.

We went to the school today for an Algebra interim test. These are school district required once a month tests that lead up to the end-of-course test that is required by the state. Her new online curriculum is going to be different, the pacing is different, so the future interim tests may be a challenge. She has another one next week.

Thursday 10/9/08

The week has been ok. Jessica went to Wal-Mart with me Monday - shuffling her feet from a lack of energy - but she went. That's the way the week went - mostly staying around the house with maybe one small outing a day.

This morning Jessica was not feeling well - really tired - and stayed in bed until 1:00 with meals being brought up to her. She's actually had several pretty good days lately before this though. As the afternoon went on, she seemed better, and needed to be, as we had an appointment at the school.

The school administrator wanted to meet Jessica and show her how to get around in the Apex online program. We finally got a user i.d. for the online classes. So, school's back in session! Jessica needs to work double time this next week because her tonsillectomy is scheduled for the next - on October 20th.

I don't know if it was that she wasn't feeling her best or that the online class isn't teaching well, but she didn't do well on the first quiz. And we found that there were some things on the quiz or study guide that isn't in the text. So, we'll have to watch this and see how it goes. She got a 100% on the second quiz though!

Weekend - 10/4 - 10/5/08

It's been a pretty good weekend.

Jessica called a friend Saturday to see if she could go to the movies with her, and it turned out that Saturday night was the school homecoming dance. Jessica debated about going to the dance, not knowing if she'd feel up to it or if it would be too much for her. We were out shopping for a new oven anyway (ours quit a couple of days ago), so we bought a dress that she could leave the tags on until we knew for sure if she'd be able to join her friends. (With CFS we're learning to take things as they come and that plans have to be flexible.) She may have been tired, but she got to go. She looked beautiful!! The dance was from 8:00 to 11:00, and she called me at 9:00 and asked to be picked up. That's all she could do - just one hour. But she had fun, and everyone was thrilled to see her. She started to not feel well (cold symptoms, felt like she was going to pass out - it was hot with all the bodies in there, and her legs were weak and numb from standing). But she got to see a bunch of friends, people her own age, and people that she hadn't seen in months and months!

I was afraid she'd be crashed Sunday. She was tired, but was able to go with us to meet Steve's family for a birthday picnic for his sister. (Jessica just sat.) And then we stopped by to see our horse, and she rode for just a little.

If she crashes tomorrow, she still will have had a good weekend.

Friday 10/3/08

It's been a quiet week just hanging around the house. We're still waiting on the school to give her a user i.d. for the new online classes, so in the meantime, she's getting farther behind.

Jessica was in bed past noon today. She got ready later and planned to go see her horse tonight, but then decided that she wasn't up to it - and that's hard for her to do when it comes to her horse! So, we stayed in and watched movies instead.

Wednesday 10/1/08

Another bad sore throat, and just a so-so day. Jessica was still in her robe till early afternoon.

Tuesday 9/30/08

Besides a bad sore throat, Jessica was pretty good for most of the day today. She was joking and in a good mood!

We met with the ENT doctor about Jessica's tonsils today. He said she has big pits in her tonsils with tonsilloliths. He said she could gargle with salt water daily and use a Waterpik a couple times a day, but from what he's seen that usually doesn't do it. It would do her good to get her tonsils out. The frustrating part is that this seemed to be one of the doctors that doesn't believe in CFS. After giving him her medicine list and some literature showing the precautions of CFS and surgery, he decided he would get a copy of her medical records first before setting up the surgery. It's an outpatient surgery, and he said she would have the worst sore throat she's ever had for 10 days. Hopefully it will help with at least the sore throats after that though.

Monday 9/29/08

Jessica had a sore throat today and a little bit of a headache, but she was up and made it to school for yearbook pictures, but that was all.

Steve and I met with the 504 Plan coordinators to amend her plan. Since she just can't make it through a full school week and has missed 14 days so far, she is going to do the rest of the semester as a homebound student. They've got a new program where she can do classes online, so she will be their first online student. Hopefully doing the online classes homebound will take some of the pressure off and let her rest and recuperate better. It was a hard decision, but she was ready. She's tired and doesn't like missing classes, getting behind, and missing out on the instruction. One of the 504 Plan coordinators was one of her teachers a year ago in the fall 2007 semester, and she saw her this morning at school when Jessica went to get her picture taken. This teacher said she looked frail - in that she didn't have the bounce in her step like she used to. We want that, and so much more, back for her!

The Weekend 9/28/08

It was a decent weekend. Jessica felt good enough to go with us Saturday night to our church dinner group - this time at a pizza and game place. Jessica wanted to play laser tag, and we let her. It was probably a little much for her, but she got to have some fun! She said she found a fort to hide in for part of the time, and she was smiling and tagging Steve and whoever else she could get from her hideout. But when she came out she was "done" and we took her home to rest.

So that left Sunday as a day just to rest at home. She fell asleep once on the living room floor.

The End of A Rough Week (Friday 9/26/08)

Jessica missed all week of school, spent most of over a week in bed, and just overall didn't feel good. She was doing good to make it from her bed to the bathroom for the most part. It looks like this long crash might've been caused from a virus. There have been tears and sadness because of all that she should be doing as an active teenager but instead is laying in bed. We gave up movie passes tonight and turned down an invitation to a steak dinner. But her attitude remains ok with it all. She's strong, and is rolling with the punches.

We had our steak dinner cooked at home yesterday, and watched our Netflix movie from the comfort of our living room couch tonight instead. It may be a lifestyle change, but we will learn to adjust accordingly.

I think she's starting to feel better today. We saw her beautiful smile! She's perked up and she's been up and about more.

Wednesday 9/24/08

Jessica didn't feel good this morning. The same as yesterday and the day before, but her head is starting to hurt too. She was worn out and spent most of the morning in bed. Her legs are wobbly and weak. She perked up for a few hours this afternoon, and we went outside to sit with the dogs. She tried to work on her make-up homework and got the vocabulary words typed in, but when she started trying to look up the detail, she turned to me and said "I can't do it." She couldn't focus, and was worn out. She's laying back down.

Tuesday 9/23/08

Jessica didn't feel well today and didn't get out of bed again today. My parents stayed with her, and my mom didn't want to leave her. Her throat hurts, her ear hurts, she just overall doesn't feel good, and she feels worn out. Her legs can barely hold her up, and when she did get up to fix her bed she started breathing heavy and said that was her exercise for the day.

My dad worked on Algebra with her today as much as she could. He's better at Algebra than Steve and I are, and has become her Algebra tutor this year since she's not getting much instruction in class. I'm still trying to get a homebound teacher, but haven't gotten a response from the school yet.

Monday 9/22/08

Jessica didn't feel well today, and was either in bed or on the couch all day. Her legs were weak, she was tired, and just didn't feel good. She's ready to get a homebound teacher instead of trying to go to school and missing. She doesn't like missing school.

At 10:30a.m. she was still in bed, but I got her up to take her to the doctor. This time to our family doctor for the congestion and ear ache. She has fluid on her ear, but also, she has a "huge" tonsillar crypt abscess. (She's had puss pockets frequently.) The doctor recommends that her tonsils should be removed. At our pcp's suggestion, we ran it by her Dallas CFS doctor who said it was "not a good sign" that she has an abscess while on an antibiotic and a tonsillectomy may help her significantly by avoiding future infections, but also could cause a setback because of the surgery and anesthesia. He was ok with going ahead with it. This is a big decision.

Sunday 9/21/08

Jessica was so-so today. She woke up not feeling well, but also feels like she's catching a cold with congestion, coughing and an ear ache. Maybe it's allergies as that seems to be going around. Her arms have been achy and weak, and she couldn't pick up the milk jug this morning. She missed out on a shopping trip for fall clothes with my mom and I this morning (JCPenney's sale!), as today she wasn't up for it, but just sent her requests instead. (And she loves shopping so much more than me!) She worked on homework as she could, but is having trouble understanding some of the Algebra without the teacher's instruction. I hope she's up for the Algebra test and 2 History quizzes that she missed, along with a History test tomorrow.

Saturday 9/20/08

Today was a good day. Jessica spent some time this morning with her horse. She played games with her on the ground. She sat on the horses' watering container and Mia stood with her and let her pet her for a good 30 minutes. And Jessica said they just were mainly just "chilling" together. While Jessica was getting in her "Mia" time, Matthew and I had a mother-son-day and went to McDonalds for a cappucinno for breakfast, to Wal-Mart for candy, to the game store for a new used Playstation game, and to get his hair cut. He didn't mind the hair cut so bad after all that other fun stuff!

Then this evening we went out to dinner with my parents and brother that was in town. And somehow ended up back at my parents to make fudge (Jessica's request) and shortcake (my brother's request). It was a fun evening. With all the baking and fudge, it felt like Christmas!

Besides a headache in the evening, for the most part, Jessica did well today.

Friday 9/19/08

Another missed day of school. Jessica didn't feel good today, and stayed home again. (She missed an Algebra test and a History quiz.) She was worse this morning, and stayed in bed until late this afternoon (almost 5:00), when she finally got up, got showered, and came downstairs. At least her color looked better than yesterday, and she only spent part of the day in bed. One day at a time...

Thursday 9/18/08

Yesterday Jessica's history teacher excitedly said "3 days in a row!" when Jessica walked in to class. Today she couldn't make it out of bed. She told me she didn't feel good at all and didn't feel like getting out of bed. She said she felt more worn out (like having run a race) than tired.

She seemed better this afternoon than she was this morning and then wound back down early this evening, but she's still only gotten up today to go to the bathroom. She's sat up reading and on the laptop some though, and we ate all our meals together in her room. As she pushes on through school through the week, the end of the week tends to be a struggle for her. It's Thursday, but I was hoping this Thursday would be better.

Monday 9/15/08

The past few days have been pretty good. Jessica had a pretty good weekend, and even got to ride her horse for a short time. She cheerfully told me "I only missed one day of school last week!" And, yes, that was an accomplishment!

When my parents were over today, my mom said "she seemed fine." She seemed to feel good today, almost normal. Maybe it's from the change in medication? We've really struggled lately with whether we're doing the right things for her or not; and being patient has been hard. We need this hope of a good day.

And since it was a good day, Jessica wanted to go ride her horse. But I had to put her off, as that may not be a good idea on a school night just yet. I hate that she can't be a normal active teenager, and she didn't like my answer, but she did forgive me after a while. So her 2 dogs and rabbit are having to be enough for now. She's taking Olsen on a walk...

Tuesday 9/9/08

Today wasn't a good day. Since a new lady started at work this week, I'm staying a little later to help get her started. I talked to Jessica after she woke up, and she said she was extra tired today, and didn't feel well. I had her go back to bed, and my dad had to wake her up at lunchtime and said she was moving slow. She went back to bed. She slept this morning, slept this afternoon, and basically has spent the day in her room in bed. And it's another missed day of school.

Monday 9/8/08

Jessica was so-so today. She said she was ok this morning, but a headache started at noon. She had two quizzes and a test to take in History, and she said she made some "stupid mistakes" on the quizzes that she wouldn't have otherwise made if she had felt better.

We had our telephone appointment with the Dallas doctor today. He answered some questions, and then went over the lab results. The lab results still showed mono, showed the Epstein Barr Virus (which he's treating), and a couple of other things that I wasn't clear on. Every time we talk to him or see him, he adds a new medication or supplement and tells us to be patient. He said we're just getting started. Please pray for our patience! He is giving her an antibiotic and something to help her sleep. She does need to sleep so she'll feel better, and she's not sleeping well at all. I've tried melatonin and Tylenol PM too, and can't tell that either really help much. As far as school, he said that a lot of his patients can't even go to school at all until later in the treatment process, so she's doing good to be able to go. So, he said to keep doing what we're doing. I guess it's getting harder to be patient and a little frustrating...