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...

Weekend 9/6 - 9/7/08

Saturday was a good day for Jessica. While I stayed at home all day and had a lazy day sleeping off a migraine, she felt good and went to see her horse. She got to ride her, and for the first time, got a lesson! She was excited! They (she and Steve) may have stayed too long, as is evident in the sunburn around her neck. She had fun though, but by bedtime, wasn't feeling well.

So, Sunday she wasn't feeling well. She rested her eyes as we listened to church online. And we had to leave her home while we went out to lunch with Steve's family. During one of her many requests today for me to go upstairs to get her this or that, I told her that I've been getting my exercise since she's been sick!

Week of 9/1/08

Last weekend was ok, a quiet weekend. We got a laptop over the weekend, so Jessica has been able to prop her feet up and get caught up on all of her homework. And she got to see her horse a couple of times.

This was a short school/work week because of Labor Day. She made it until Thursday, and then, tired with a headache and not feeling well, went back to bed for 2 hours instead of being able to make it to school. But, thankfully, that's the only day she missed this week. She was so-so this morning (Friday), but wanted to go to school, and made it through both classes.

A lady called that Jessica has babysat for - and her kids really liked Jessica. She had a new baby recently and hasn't called in a few months. Jessica had to explain to her that she had been diagnosed with Chronic Fatigue Syndrome and she was trying to go to school a half day and couldn't even make it that day, and really couldn't babysit right now. The lady said "I'm going to quit calling you, and you can call me when you get better." I hate seeing her missing out on things, but Jessica assured me that she's learned to deal with it [not being able to do things].

Tonight she felt pretty good, so, to make the most of it, Steve took her to see her horse.

Friday 8/29/08

Jessica didn't sleep well at all last night. I got a text from her at 10:30 saying she couldn't sleep. I also checked on her at 4:00a.m. She was awake, and her throat hurting. She didn't feel well today. She rested this morning, slept this afternoon. Her head's been hurting for two days. My parents came over, and said she looked like she did last spring when she wasn't doing well at all. My mom told her to go brush her teeth to get ready for class and talk to God and see what she felt like doing. Jessica came halfway back downstairs, sat on the stairs frustrated, and said "I don't know what to do." She didn't feel good, but doesn't want to miss school. She tried. My parents sent her back to bed. When it was time for her second class, my mom tried to wake her to see if she could make it for that one, but Jessica was unresponsive. My mom had to get her ear close to hear her one word answer. We may have to do something else about school. Use the homebound teacher (for both or one class)? Or homeschool? She missed a History quiz today. She's missed 3-1/2 days in the first 2 weeks of school.

This is the start of Labor Day Weekend. Matthew got up this morning asking about going camping or going somewhere. When we told him that Jessica probably wasn't up to it, he was sad. Though he loves her and has been so helpful and understanding for the past eight months, he wants to do something. He wants to go somewhere. And he should. (He's 11.) It's understandable. How do we make sure we're keeping a good balance?

Thursday 8/28/08

Jessica woke up with a bad headache and was tired. She couldn't make it to her first class, and missed an Algebra test. She slept this morning, slept this afternoon. She's been dragging tonight and said her head still hurts.

I got a devotional in my email today that was on Philippians 4:11-13 - "I have learned in whatever state I am, to be content... I can do all things through Christ who strengthens me." Being content no matter what state we're in can be hard to do. Something to work on! The message was so very timely! Here it is for anyone that wants to watch it:


Plunge (Dive 1) from Jason Curry on Vimeo.

Wednesday 8/27/08 - 504 Plan

Steve & I had a meeting today with the school administrators to discuss a 504 Plan (an accommodation plan backed by federal law) for Jessica. And it went well! They were so nice! They basically said, without hesitation, that she was eligible for the 504 Plan. It's a legal document and the teachers get a copy, so that should help us. We got included: extra parent-excused absences (15 instead of 4), that absences won't count against her grade (because the Algebra teacher had in her rules that 5% of the grade was based on attendance and participation), extra time for work, and that she can dictate her homework to me to type if needed (because of the trouble with the History homework last week). We can meet again anytime and change it. They were flexible and so understanding. I'm so relieved!

Jessica's tired tonight, but made it through both classes for 3 days this week!

Saturday 8/23/08

We had new neighbors move in 2 doors down a year and a half ago, and, besides the initial welcome, we've hardly seen or talked to them - until today. They were having a garage sale, and I got Steve out of bed at 7:00a.m. to go with me. It was mostly baby stuff, so nothing we needed, but the conversation was. (I don't know that this was just a coincidence meeting today.) They're moving out of state next weekend. We found out that the lady (31 years old) has CFS, which started with mono when she was 16. We talked for an hour. Also, she works from home and gave me some information on that, as that's something that I've considered that I may need to start doing.

Jessica's been tired today, and had a headache for part of the day. She took an hour and a half nap this afternoon. Tonight she's dragging.