It's New Year's Eve. Jessica worked with my dad on Algebra till mid-afternoon, and then just hung out around the house. Whenever I asked her how she was, she said she was ok. But when it came time for dinner and Steve wanted to go out to eat, she said she "didn't want to move." She was too tired and also feels like she's catching a cold. So, we had Chinese take-out and a quiet New Year's Eve at home playing our new Electronic Monopoly game that we got for Christmas. Monopoly can go on forever without end, so we stopped at 10:00 (didn't see the New Year come in) with Steve winning. It was a nice quiet and fun evening with the family.
Wednesday, December 31, 2008
Tuesday, December 30, 2008
A decent day. Jessica worked on Algebra till late afternoon. (Yes, even during the holiday break since she's so far behind.) And then she wanted to go to the tack store to look for riding pants and horse items to spend her Christmas money on. That was our short outing for the day.
Posted by Laura (aka Mom) at 12/30/2008 09:46:00 PM
Monday, December 29, 2008
It was a beautiful sunny 65 degree day. A perfect day to be outside, so Jessica set up a riding lesson this afternoon (one of her Christmas presents), since she said she was feeling ok today. So after spending most of the day relaxing in front of the tv (and Little House), she got to enjoy a 45 minute horseback riding lesson. They worked on turns and her teacher said that she worked them both. So, after we got home Jessica landed on the couch, and headed for bed at 7:00. We are now all gathered in her room to watch a movie with her.
Posted by Laura (aka Mom) at 12/29/2008 08:06:00 PM
Sunday, December 28, 2008
It was a good Christmas and a pretty good week; though we did miss the Christmas Eve service due to Jessica not being up to it (with a headache) and the fact that I had a migraine.
We had two families to see on Christmas Day, and a family group of 20 (with about a half a dozen conversations at once!) on Saturday. A movie (Bedtime Stories) on Friday. Returns and exchanges on Sunday and a short Christmas visit with our horse. So, there was plenty of excitment going on, and Jessica may have had a headache here or there, but overall held up pretty well. She got what she wanted for Christmas, was happy about her horseback ride, and we all had a nice Christmas break. After our shopping and a short ride Sunday, Jessica went to bed feeling like she was catching a cold, but I think she was just winding down from our busy holiday weekend.
Posted by Laura (aka Mom) at 12/28/2008 09:43:00 PM
Monday, December 22, 2008
Jessica wasn't feeling well today. My dad did a little Algebra with her, but then called it quits early because she wasn't up to it and was falling asleep on the couch. She was really tired and felt like she was catching a cold. So, to bed she went, and took about a 3 hour nap. She woke up feeling better though, and we were able to have friends over for pizza and a movie (Fred Claus).
It seems that her bad days don't end up being as bad as they used to be.
Posted by Laura (aka Mom) at 12/22/2008 09:00:00 PM
Sunday, December 21, 2008
It was a pretty good weekend. Jessica stayed in for the most part wrapping presents and watching Little House.
Saturday she did get to go see Mia, but it was a rainy, yucky day, so it wasn't a good day to ride. And she and I made a quick trip to Target because she wanted to be the one to pick out her new baby cousin's Christmas present (even if she was getting tired).
Sunday evening she (and a cousin) went to the youth group's service and Christmas party at church where they had music, fellowship and ended the evening roasting marshmallows around the bonfire. She had a little bit of a headache, but otherwise held up ok.
Posted by Laura (aka Mom) at 12/21/2008 09:55:00 PM
Thursday, December 18, 2008
Jessica started out tired and not feeling too well this morning (including a sore throat), and once even felt like her legs were tightening up. She and my dad studied Algebra for a little while before time for her last interim test. Seeing how she was feeling, I wished we could reschedule the test, but instead she drug herself there. She was shuffling her feet as we left. But she did decent on the test, and we amended her 504 Plan while we were there to allow her to try to go back to school for half a day next semester.
When I picked Matthew up from school, he was feeling much better, and as the day went on, Jessica's energy perked up some. This was especially good, because we had plans for the night. My wonderful kids surprised Steve and I a few days ago with an early Christmas present - tickets to see the Radio City Rockettes Christmas Spectacular. The four of us went. We were dropped off at the door, and Jessica held up ok. It was a wonderful performance and a very nice evening.
Wednesday, December 17, 2008
Matthew stayed home sick today - sore throat, achey, etc. Steve took him to the doctor, and it's just a virus.
Jessica tried to do a little (online) Algebra this morning, but was having computer issues so she didn't get very far. But, it seems that she's not feeling very good today anyway - really tired, sore throat, and getting a headache. She's been laying on the couch most all day looking like she could fall asleep.
So, I've got one downstairs on the couch and one upstairs in bed, and I'm getting my exercise!
Posted by Laura (aka Mom) at 12/17/2008 06:11:00 PM
Tuesday, December 16, 2008
School and my office are closed today because of ice. Yay! So a quiet day at home. We made fudge and no-bake cookies and watched Little House on the Prairie. While I wrapped a couple of presents, Jessica did a little Algebra, but as the day went on she seemed more tired. By early evening (7:30 or 8:00), she was ready to go to bed.
Posted by Laura (aka Mom) at 12/16/2008 08:30:00 PM
Monday, December 15, 2008
Jessica was tired today, not feeling the best. Probably because of the weekend. My dad came over to work on Algebra with her as usual, and he said she was "mopey," meaning that she was moving and thinking slow. She took the opportunity to lay on the couch with Pumpkin (our rabbit) while my dad went to get her lunch, and they were able to get a lesson finished. She's tired, but managing ok.
Now we're listening to the sleet and wondering whether school's going to be closed tomorrow.
Posted by Laura (aka Mom) at 12/15/2008 09:13:00 PM
Sunday, December 14, 2008
It was a pretty good weekend.
Saturday Jessica wrapped presents, and then went to ride Mia - and she did well. In the evening, the kids hung out with my parents while Steve and I went to his office Christmas party. Jessica seemed to be having a good day!
Sunday was a lazy morning. Then Jessica's life group from church was having a Christmas get-together - going to Wal-Mart to shop for a family and going back to wrap, eat, and hang out. This get-together started at 2:00 and was scheduled to possibly last till 8:00p.m. She made it till 6:00, and then texted me saying she was a little tired and ready to go. I thought she did great to last that long partying! The rest of the evening was spent with the whole family on the couch watching Snow 2 Brain Freeze - a good Christmas movie!
Posted by Laura (aka Mom) at 12/14/2008 10:17:00 PM
Friday, December 12, 2008
There's the saying "we are what we eat," but what about what we THINK. We are what we think. Our attitudes and mindsets make a big difference in our day, our feelings, and spreads to the people around us. Whenever we ask my dad how he's doing or how his day is, his response is always SUPER. If you mimic that attitude, it does make a difference. Whatever our circumstances, we can learn to be content. I read a note from a friend today that says it better...
Something to think about.
What do we really mean when we ask each other “how are you doing?” Most of the time it is a surface level comment just to be polite. For most of my life I have tried to maintain a positive mental attitude. However, from time to time I allowed myself, like you probably do as well, to wallow around in self pity. Then I would despise how I felt and change my thoughts. After changing my thoughts I soon found that my reality would change as well. Henry Ford, the famous American who revolutionized automobile manufacturing said, “Thoughts are things.” He was right. Thoughts determine the lens of how we view and perceive the world. And we can consciously change how and what we think. I’ve done it. In the past, when people asked how I was doing my reaction was usually to give a summary of my circumstances. How are you doing? “Oh, pretty good.” How are you doing? “I’ve been better.” These were common answers to the questions. What I found was that what I thought and then spoke became my reality. Literally, one day I woke up and DID NOT like my reality. So I began speaking a desired reality into existence. Now, when asked how I am doing, I always say, “I’m having the BEST day ever!” The reaction from some people is priceless. These usually sound something like: “Wow, I wish I was too,” or, “Gee, that’s great!” and sometimes the brave (or just curious) will ask, “Really? Why’s that?” It’s one of the most frequent questions I get. How can this be your best day ever? I even have one client who argues with me. She says, “I’m having a pretty good day, but it’s not the best day I’ve ever had.” After several attempts to explain the philosophy behind my statement, her exasperation became so great that she just stopped asking me howI was doing! Have the BEST day ever! It is NOT about the circumstances, it’s about your mindset. Each and every one of us has circumstances each day that range from unpleasant to really bad. If you focused on the circumstances, then yes, that becomes your reality. In my book of faith and doctrine it says, “be content in whatever circumstances in which you find yourself. . .” I thought about that a lot and decided that I would give it a try, and have the best day ever. Also, I began to live in the present. It used to be that I could not enjoy the present because of “suffering from mistakes” of my past, and worrying about what would happen in my future. My conclusion is that the only day I have is today. Now. Right now. That’s it, I can’t get back my yesterdays and there is no promise of tomorrow. I only have today. If that isn’t enough of a realization for you to have the best day ever then “snap out of it!” You see it boils down to this. This is the only day you have. Yesterday is gone, forever, and, tomorrow may never come. Yes, this is the best day ever! No matter what your circumstances, IT IS THE BEST DAY EVER! Some always find a way to ask about bad possibilities:“What if you lose your job?” I was out of work when I found this one, so the door for greater opportunity will swing open. Have the BEST day ever! “What if a family member dies?” Then I will celebrate their life and cherish all the memories I have. Have the BEST day ever! What if you die in a car crash on the way home?” According to my book of faith and doctrine, I am promised a new body in a beautiful place, with my Messiah, forever. Now how can that be bad? Have the BEST day ever! Once you determine that you will not be emotionally pushed back and forth by the “things that happen” in your life, you will find that you no longer continue to attract these negatives. Your reality is that you will begin attracting good things in your life. In fact, people will become attracted to you because of your genuine positive charge. The reverse is true of “negative” people. Nobody enjoys their company and most will simply try to avoid them. Take the first step. Tell yourself that this is the BEST day ever. It’s ok if you don’t “feel” it or believe it yet. Just say it. Every time you are asked “how are you doing?” simply say “I’m having the BEST day ever!” Your speaking it will make it your reality! Have the BEST day ever!
Posted by Laura (aka Mom) at 12/12/2008 05:33:00 PM
Jessica seems to be doing ok for the most part; the cold symptoms didn't progress. She even got out to go Christmas shopping with me to Wal-Mart and the pet store, but only with the condition that she didn't have to walk very far. So, not a bad week.
Posted by Laura (aka Mom) at 12/12/2008 05:26:00 PM
Wednesday, December 10, 2008
Two days in a row - Jessica was awake at midnight, couldn't sleep, but then slept in till 10:00a.m. But she's been holding up pretty good. She even was up to going to art class Tuesday night. As we were walking out she told me she was tired, but she wouldn't have let on any earlier because she was enjoying herself!
Tonight she came down saying she was going to bed at 7:50p.m. She'd been sneezing all day and was feeling crummy - feels like she's catching a cold.
Posted by Laura (aka Mom) at 12/10/2008 08:30:00 PM
Monday, December 8, 2008
Jessica was tired today with a sore throat. This morning she didn't feel good, but, as my dad said, she was being a trooper to try to push through some Algebra still. They worked through a couple of quizzes and quit early. She rested on the couch, and then asked me to go get her something from Wal-Mart but she didn't feel like going. Though, she debated it and decided she'd go too if just in to one area of the store. So, I dropped her off at the door and she went to the crafts section only. She had perked up for a little while, but is again tired tonight. She's been out of breath some and said her heart is racing. Maybe the weekend was too much.
It's time to rest in front of a Christmas movie - Jingle All The Way tonight.
Posted by Laura (aka Mom) at 12/08/2008 06:58:00 PM
Sunday, December 7, 2008
It was a pretty good weekend.
Friday Jessica seemed to feel ok, was happy, and even went shoe shopping that afternoon.
Saturday while Matthew was at a friend's birthday party, I took Jessica to see Mia. I groomed Mia, and then Jessica got her saddled up and rode for a short (15 or 20 minute) ride. Jessica got Mia to gallop for the first time, and she was exploding with excitement. That night she was tired, but rested on the couch in front of the tv. After going to bed earlier in the evening, she was awake at 11:00p.m. wishing she could sleep.
Sunday we got our outside lights put up, or most of them. Jessica helped some, and even helped straighten up the house some. But she was anxious to show her dad how well Mia had done the day before. So Steve took her to the stables for a short ride. And she got her to gallop again, and she did well. We had dinner out with my parents after that, so it was a full day. By evening, Jessica was tired and not feeling too well, but rested on the couch while we watched a Christmas movie or two together.
Posted by Laura (aka Mom) at 12/07/2008 10:38:00 PM
Thursday, December 4, 2008
As usual lately, Jessica woke up slow this morning. But this afternoon, she was feeling good and wanting to get out. She went with me to pick up the boys (Matthew and a friend) from school, and then we went to Wal-Mart (the usual). Tonight, the kids and I went to the town's first annual Christmas parade and after-party. There were floats, lights, Santa Claus, hot chocolate, music, people dancing (Cha Cha Slide, macarena, etc.), carolers, Christmas movies on the big screen in the park, etc. Lots of fun! And, as the High School Varsity Dance Team's float passed us, the girls screamed "Jessica!..." (These were the girls that she was on the dance team with up until she got sick.) They were thrilled to see her. And that made our night!
Posted by Laura (aka Mom) at 12/04/2008 08:57:00 PM
Wednesday, December 3, 2008
Jessica woke up at 9:30a.m. still sleepy and with a sore throat. But as the day went on, she did ok.
We had our scheduled telephone appointment with the Dallas CFS doctor. This appointment evidently was just to go over things, check in, review and see how things were progressing. It seems that we're doing all the right things at this point. We just have to keep doing what we're doing "for a while." Dr. S said we did a good thing by removing her tonsils even though there was a setback (because of the anesthesia and surgery). Tonsils are lymph nodes. The Epstein-Barr Virus (EBV) lives in lymph nodes, so the tonsillectomy "lowered her load," by removing a big portion of it and taking them out of her body. Dr. S discussed her thyroid medication. They can tell how the thyroid is doing by vital signs. If the body temperature, pulse and blood pressure are low, that means they may need to bump up the dose. (Jessica's body temperature has been consistently low the last 11 months.) She’s on a low dose of thyroid medication right now, not even up to the therapeutic dose yet, and so he is going to bump it up some. Her energy is not quite where we’d like to see it, and this should help, along with possibly helping with her focus/attention difficulties. He is going to send us a requisition for some lab work to check what was off or low on the lab results that were taken this summer. And our next appointment isn't for another 2 to 3 months. (That's good!)
Maybe her energy isn't quite where we'd like to see it or where it was, but she has been able to do more and we have seen improvement.
Tuesday, December 2, 2008
Jessica slept till 9:30 this morning and woke up sleepy. But this afternoon, she was feeling good (even after a very long Algebra session). She, again, wanted to get out of the house (11 months of being mostly homebound makes a major case of cabin fever), and we went for another quick trip to Wal-Mart. By evening, she didn't have quite as much energy, and we ended the night resting on the couch watching a Christmas movie (Polar Express).
Posted by Laura (aka Mom) at 12/02/2008 09:24:00 PM
Monday, December 1, 2008
Since Jessica woke up tired and with a sore throat, she was glad that she had the day off from school today. (My brother was still in town, so my dad wasn't coming over for Algebra.) She laid around all morning. But after lunch, did a lesson in Algebra, and then said she felt better and wanted to get out. We went for a quick trip to Wal-Mart. She was again a little tired in the evening. But, considering our weekend, I thought she did real well.
Posted by Laura (aka Mom) at 12/01/2008 10:19:00 PM
Sunday, November 30, 2008
Jessica got to go see Mia for a short visit and ride this morning. She said Mia did well, and she was very pleased.
We headed out for our Thanksgiving trip with extended family by mid-afternoon. This year it was at Lake DeGray. The first night was time for everyone to arrive and visit. By our (later than usual) dinner, Jessica was tired and went back to the room to lay down. But that allowed her to be able to join the group later for hot chocolate and brownies as we all (all 13 of us) gathered in one room to visit.
This morning while the guys all went golfing (Matthew's first golfing experience and he loved it!), the girls went on the trail ride. It's an easy slow-paced ride through the woods along the bank of the lake. Then lunch at the hotel. Our annual family pictures. A game of Scrabble - that Jessica won (and spelling is not her forte, but it was a group effort). And the resort was having a square dance, so we joined in for one song. And ended the evening with a late dinner at the local pizza place.
The whole group was meeting for breakfast at 8:45a.m. I struggled to get Jessica out of bed at 8:30a.m. She didn't budge. Sound asleep. After a while of trying, she finally woke up enough. She was tired and looked so as well. But, we said our good-byes and were back at home soon. Jessica was able to rest on the couch the rest of the day. We all had fun on our trip. Jessica did ok for the most part, but said she was tired throughout the weekend. By late-afternoon today, she was saying she "doesn't feel good."
Posted by Laura (aka Mom) at 11/30/2008 09:30:00 PM
Thursday, November 27, 2008
Today is a day to reflect. As the four of us sat at the breakfast table, we each got a piece of paper and wrote things that we are thankful for. Even though Jessica has been sick this year, we're thankful for our health. Even though we've had a ton of medical bills and the economy isn't good, we're thankful for our finances and what we have.
- Jessica: food, family, friends, house, toys, church, hot water, trips, Mia, Markee, Olson, & Pumpkin
- Matthew: pets, banana cream pie shakes, food, clothes, tv, house, family, weekends, holidays, toys, trampoline
- Steve: family, jobs, health, house, finances (lack of large bills), clothing, Jesus Christ, vehicles, neighbors, neighborhood, 4 seasons, relationship with wife and kids, pets, co-workers, friends, church
- Laura: family, kids, husband, that Jessica is better than she was, the doctors, laughter, our house, my job, my health, our finances, pets, evenings with the family, hot chocolate, food, sunshine
There's so much more. There's no burden too big. No perceived need or want that really matters. We have so much to be thankful for!
Our Thanksgiving consisted of the usual ... eating and more eating. We spent time with family, and Jessica held up ok.
Posted by Laura (aka Mom) at 11/27/2008 09:55:00 PM
Wednesday, November 26, 2008
Today was the first day of Thanksgiving break from school. Jessica and Matthew just hung out around the house most of the day. Jessica was a little tired, but she seemed to want to get out, and asked to go Christmas shopping for gifts for our pets and her new cousin. We made it to the pet section of the store, since it isn't too far inside the store. But when it was time to head to the baby section in the back corner, Jessica was done. That was too much. And tonight she's tired, and has said that she "doesn't feel good."
Posted by Laura (aka Mom) at 11/26/2008 08:08:00 PM
Tuesday, November 25, 2008
I asked Jessica today if she thinks she's better. And I'm not the only one that's asked her that. It's seemed like she's had some improvement over the last week or so. She's seemed more normal - at least her normal. No real crashes. She agrees that she's some better; at least her throat's not hurting like it was, but she's not as improved as she'd like.
She took her Algebra "semester exam" today, and made an 89%. And that's with the computer online class counting 2 questions wrong that weren't. This was an online timed test (50 minutes) for 57 questions. My dad says she was a little slow thinking through it sometimes and getting to the answer, but he just watched as she worked through it. She should still finish this one class mid-January.
Jessica and I went to a couple of stores this afternoon to do a little Christmas shopping. And she seemed to do ok. Actually, as tall as she's gotten and as long of legs as she has, when we were walking through the store, I found myself doing doubletime to keep up with her!
Now it's time for brownies and tv from the couch.
Monday, November 24, 2008
Jessica didn't sleep well last night, but doesn't seem to be too bad today. As usual, she wakes up slow in the morning, but is better as the day goes.
I guess she's at the midway point for Algebra and reviewed today for the upcoming semester exam.
Jessica was invited to join her church lifegroup at the movies tonight to see Madagascar 2. They'd already picked the 8:20p.m. movie to see, which isn't the best time for Jessica. (Mornings and evenings generally are harder.) But, she seemed to think she'd be ok tonight, and she wanted to have a girls night out. And she did! And she did ok too. More good news! It was a much needed night out with friends.
And Matthew & I snuck in to see the movie too (but sat by ourselves)! It was a cute movie.
Posted by Laura (aka Mom) at 11/24/2008 10:20:00 PM
Sunday, November 23, 2008
We had a "first in a long time" today. Jessica got on the trampoline with Matthew (just for a few minutes) - and actually did a back hand spring - three times. That was the extent of all that she did on there, but that was the first time in almost a year that she's done any kind of jumping at all on the trampoline. That's some good news. Something to get excited about.
She was some tired today though. We had our Thanksgiving celebrations with Steve's side of the family today, and she held out ok, but was mostly sitting.
She had planned and hoped to go to the youth church services tonight, and even told some that she was planning on being there, but, when it came time, she said she didn't feel up to going - "not feeling too good." So, we ended the evening at home in the comfort of our living room watching another Christmas movie.
Posted by Laura (aka Mom) at 11/23/2008 09:58:00 PM
Saturday, November 22, 2008
Jessica hasn't been too bad this week, mainly just hanging around the house for the most part. My dad's here every morning by 9:30ish and they're working on Algebra till after lunch. There was one day this week she couldn't focus, and she might be a little tired, and she's had a few headaches, but they went away pretty well, and she's held up ok. She's been to Wal-Mart for short shopping trips a couple of times - once just because she wanted to get out of the house.
Today (Saturday), was a pretty good day. While Matthew spent about 7 hours raking and burning leaves and working in the yard, Jessica helped me around the house some by dusting the living room, straightening her room, and folding a load of clothes. (She hasn't earned allowances by doing chores in a long time, because she's not able to.) Then she and I went for a short visit to see Mia. She rode bareback just a little. Then the kids went out to eat with my parents while Steve and I went out with friends. It was a pretty good day. And we ended it with a Christmas movie. This is my favorite time of year - We enjoy the Christmas movies.
Posted by Laura (aka Mom) at 11/22/2008 10:56:00 PM
Monday, November 17, 2008
Jessica and my dad worked on Algebra for a little while this morning, and Jessica said she was having trouble focusing, a common problem with her CFS. But they got done what they needed to get done.
Jessica pointed out to me that today is Mia's one year anniversary. One year ago today, Jessica's dream came true and we got a horse - Mia - a rescue horse. So, today being her anniversary, I had to take Jessica to the stables. We weren't going to stay long, just a quick visit. Jessica got on her back bareback. But, for the most part, I noticed that she wasn't riding. She was sitting in place. Jessica later said that she was hoping that I hadn't noticed. In other words, she was tired, but trying not to let on.
So, on the way back from the stables, when I announced that dinner tonight was going to be "fend-for-yourself-night," Jessica said "can you fend for me?" (since she was running low on energy). Every so often I can get away with fend-for-yourself-nights, which usually consists of everyone heating up what they want of leftovers or fixing something easy. So, tonight I fixed grilled cheese and ramen noodles for the kids - at their request. I find myself thinking that we do so many normal things (i.e. physically getting this or that) for Jessica that parents of a well child take for granted that their child will do themselves. But I am so happy to be able to do for and be there for her!
Jessica had a sore throat before bedtime.
Posted by Laura (aka Mom) at 11/17/2008 06:19:00 PM
Sunday, November 16, 2008
Friday Jessica was in a good mood, and felt good enough to go shopping some (limited to 2 stores) after working on Algebra. We were trying to find a winter coat, but it looks like we waited too late.
Saturday we just hung around the house most of the day, until the evening when we went to a dinner theater at church. What fun! The youth group put it on. Jessica wasn't able to participate, but got to attend, and the headache that she had when we got there seemed to disappear as the night went on. It was a good evening had by all. Jessica said her cheeks hurt from laughing so hard.
Jessica seemed to feel ok today, and got to go on a very short (20 minute) visit to see her horse. And this evening she and Matthew even surprised us with Christmas shaped sugar cookies. (I have the best kids!) We got our Christmas tree put up too, as the kids had been asking for it all week.
Jessica mentioned that her throat hasn't been hurting like it was before her tonsillectomy (which had been daily), so maybe the tonsillectomy really has helped!
Posted by Laura (aka Mom) at 11/16/2008 09:48:00 PM
Thursday, November 13, 2008
We met with the 504 Plan Coordinators today. The online history class just wasn't working. The main problem is that there wasn't much meat in the text (including the use of cartoons) but the test questions were so detailed that the answers could not be found. So, no more history. We'll start over next semester. In the meantime, she'll finish Algebra II. We talked about next semester and what to take, how many classes to try, and whether in the classroom or as a homebound student. As the Coordinator said, at this rate, it'll take her at least an additional 2 years to graduate high school. It's a tough decision, as we don't know what she'll be able to do. And Jessica was "wondering if school could get any worse" (because she's getting so far behind)! And she is sick of Algebra II. (Though, she's got a 94% in there!) I know she is frustrated with it, and so are we. We're struggling with the decisions of what to do. Do we homeschool now? Are we qualified enough?
Jessica had to take another interim assessment test in Algebra while we were at the school, and she did pretty good considering she hasn't gotten to that material yet.
Jessica was happy that she "got to have some fun tonight" by going to art class. Thanks Nana!
Wednesday, November 12, 2008
There are two ladies at work that are very nice to ask me every day how Jessica is. And this morning when I was able to tell them that she had a good day yesterday, they told me that it seems that I'm saying that more often. I hope so!
Jessica's a little tired today, but doing ok.
Posted by Laura (aka Mom) at 11/12/2008 03:08:00 PM
Tuesday, November 11, 2008
Jessica's had a pretty good day! She looked really good today too.
Posted by Laura (aka Mom) at 11/11/2008 07:06:00 PM
Monday, November 10, 2008
In Jessica's words, today she's having a "crummy" day. She has a headache, tired, and a sore throat. My dad came over as usual to do Algebra, but her head started getting worse, so she went back to sleep. She's curled up, with her rabbit, on the couch about to take another nap right now.
Even though it was fun, I guess the weekend was too much.
Posted by Laura (aka Mom) at 11/10/2008 12:57:00 PM
Sunday, November 9, 2008
It was a good weekend! The guys were gone hunting most of the weekend, so while they had their father/son time, Jessica and I enjoyed some girl time. We went to the stables Saturday for Jessica to get in her Mia time - and she did! We were there about 3 hours. She rode, and even got the stable owner to give her a lesson. And she said they both (Jessica and Mia) did good!
Saturday night we had friends over for a pizza and movie night. We had fun. But it ended up being a little too late, especially for Jessica's bedtime.
Sunday, Jessica may have been just a little tired, but not too bad. She just hung around the house for the most part, and did just a very short (maybe 30 minutes) amount of Algebra to finish up a lesson.
Sunday night, she made it to the church youth services to meet some friends. (She tried last weekend, and couldn't stay.) I hung out at the church; she stayed for an hour and left when the other kids were about to eat. She was told that she looked so happy and healthy!
It's great that she got to have some fun this weekend and see some people!
She went to bed with a headache.
Posted by Laura (aka Mom) at 11/09/2008 09:54:00 PM
Friday, November 7, 2008
It's seemed like a fairly good day - Jessica's doing pretty good. It hasn't been a bad week. Jessica's mainly been just hanging around the house or doing schoolwork. We have gotten up with her though every single night in the middle of the night after getting a text message from her because she can't sleep (a standard CFS symtom).
The online classes aren't working as well as we'd hoped. Of course, it will take Jessica past the semester to finish since she started the online from the beginning at mid-semester. She's doing ok in Algebra, with my dad's (daily) help, even though there's a few glitches in the program itself. The History course is a different story (not set up well), and we have asked for Jessica to be transitioned back into the normal classwork (still homebound). With 5 weeks left in the semester, we'll have to see how it goes.
Wednesday, November 5, 2008
Jessica hasn't felt that good today. She's tired, but also she said she "just doesn't feel good" but doesn't know why. She's been working hard on school, and also didn't sleep well last night.
The last couple of days have been marathon school days working around 5 hours on Algebra and a couple of hours on History. When she couldn't sleep last night, she even tried to do some schoolwork in the middle of the night, but, being tired, she couldn't think well enough either.
Posted by Laura (aka Mom) at 11/05/2008 04:22:00 PM
Monday, November 3, 2008
Jessica worked on schoolwork a lot of the day today - Algebra with my dad and then History. I'm not sure about these online classes. Jessica doesn't like them saying that she doesn't learn anything from them and "The history stuff is so stupid! All it is is little cartoons, over and over and over." Steve and I are wondering when she'll be able to finish anyway, since she started over from the beginning about a month ago, but took off two weeks for her tonsillectomy, and there's only 6 weeks left in the semester. She can go into the next semester, but then what will that do to her spring schedule? We'll just keep pushing on and see how it goes...
She's somewhat tired and dragging tonight.
Sunday, November 2, 2008
This afternoon Jessica was feeling good and got to ride her horse. She wasn't tired; her throat wasn't hurting, and her ears just a little.
She'd been planning all week to go to the youth service at church tonight - she hadn't gone to in months and months - and the fact that she was feeling good today seemed to be working well toward that. There was a parent meeting at 4:30 first. The sermon starts at 5:30 and about 45 minutes later is the small groups that she was hoping to go to to meet friends. After the parent meeting, we met back up with her and she said her back was hurting and she just didn't feel up to staying. She was achey with her back, neck, etc. hurting. So, she said hi to a couple of people and we left. We'll try again another time.
Posted by Laura (aka Mom) at 11/02/2008 09:31:00 PM
Friday, October 31, 2008
Jessica's doing better from her tonsillectomy, which is a huge relief. She's not able to eat much of anything yet, and has lost 10 pounds, and still has some pain, so not completely recovered, but so much better! And she worked with my dad on Algebra for a good part of the afternoon.
We had a fun family night tonight - family game night and a movie - what seems to be becoming our Halloween-alternative tradition. Jessica was in tears from laughter at dinner. (I'll spare you the details.) And then we played Pictionary Jr, which also had us rolling with laughter at Steve's depiction of the "Big Bad Wolf." (What was that "chicken man" supposed to be anyway?) And then our weekly movie which tonight was "Another Cinderella Story." It was a cute movie. Matthew was rolling his eyes at Jessica's pick of a movie, but after it was over, he even liked it. All in all, it was a fun evening that we all needed.
I was given a personal sermon this morning on laughter, and relaxing because life is so short. It's easier when they are not living it. But, then again, laughter is always good!
Jessica's tired, but hung in there.
Posted by Laura (aka Mom) at 10/31/2008 10:00:00 PM
Thursday, October 30, 2008
Jessica said she feels "pretty normal" today, but then to clarify she said that is "my normal." In other words, she's getting over the tonsillectomy. Her pain seems to be better today, but I can also tell that she's some tired today. I'm thinking this is a CFS tired instead of a surgery or pain medicine tired though.
But the good news is that she got up off the couch and out of the house for the first time in almost 2 weeks. We sat outside on the front porch (it was a beautiful day!), and then I took her to see her horse. She knows her limits though, and we didn't stay but for a short visit.
A much better day!
Tuesday, October 28, 2008
A better day. Jessica's been able to eat some, been drinking, and sitting up watching tv and mostly playing on the laptop. She's still got some throat and ear pain, and has been on pain medicine still today and using the heat and cold compresses, but she's better! What a relief!
Hopefully we can even get school back in session again - maybe tomorrow.
Monday, October 27, 2008
I've been sleeping on the cot next to Jessica for the past week since her tonsillectomy. Last night we were up several times - midnight, 12:30, 3:00 (Steve took over for a while), 5:30, etc... Jessica has been in so much pain. In tears. Feeling like there are knives in her ears. The doctor had us come back in for another IV with fluids and a steroid. He said her ears look good. The pain in her ears is referred pain. He says she has to drink. Force herself to drink even though it hurts. If she doesn't think she can drink (and I'm not sure if she can drink, at least not enough), he said he can put her in the hospital. But as we got back toward the house, she said she was hungry and wanted chicken nuggets. And she actually ate them. That's the first real food that she's had in a week! I hope this IV gets her over the hump.
Sunday, October 26, 2008
The morning started out rough, the same as yesterday - an extreme amount of pain, close to tears. Her ears seem to be hurting worse, but her throat's starting to hurt a little less. She slept or rested on the couch until late this afternoon, when she finally asked for some alphabet vegetable soup (or "can-o-happiness" as Matthew called it) to eat. Of course she didn't eat much, but she ate something. She's sitting up, and on the laptop right now. And I've seen a smile or two this evening. The little things are big these days. We need to find the good in whatever hand we've been dealt and learn to accept, adapt, and make the best of it. This past year has been a huge lifestyle change for us. Today Jessica said she was "wishing she could go somewhere besides her house." Most of this year has been spent inside our house, not getting out much. But we're adapting. When all she can do is go out in the backyard, the dogs and the sunshine are a great spirit lifter. When all she can do is lay on the couch inside, the bunny rabbit does the same and is a great companion. We accept and make the best of what we have. When life gives you lemons, make lemonade! Or a can-o-happiness.
We heard the best sound in the world tonight - Jessica's laughter! One of the highlights of our day was when Jessica rang her bell (to call me in when she needs something) to show me that she'd found the letters and spelled out her name in her alphabet soup!
Appreciate the little things...
Saturday, October 25, 2008
Friday Jessica slept most of the morning and her ears were hurting - the nurse had told us that she would have referred pain in her ears. But in the afternoon, she wasn't too bad. She actually ate! Some vegetable soup and a few sips of milkshake. So that's good news! And she got off the couch! She wanted to go be with Matthew in his room while he played Playstation. (I am very lucky in that my kids get along so well and actually like being together.) So, not as bad of a day. But, as usual, by 5:00p.m. the pain's worse and she feels worse, but held out without pain medicine until bedtime.
Today though, her pain up to her ears is hurting so bad (along with a headache) that she can't open her mouth. She's hungry, and asked for a milkshake, but can't seem to open her mouth to drink it. We'll try again later.
I know the doctor said it would be the worst sore throat that you'd ever had... for 10 days. But I guess we didn't realize it would be this bad. She said she's "hoping this junk will hurry up and be over with." I am too Babydoll! We all are!
Thursday, October 23, 2008
Jessica is smiling! And... talking!! :) No more white board! And she's asking for McDonald's sweet tea. She says she's so-so and she's still laying down and sleeping, but I think we're turning the corner on this.
Wednesday, October 22, 2008
Jessica's had a lot of pain and not drinking like she needs to because she can't seem to do it. She also is finding it hard to breathe and swallow, which evidently is from the normal healing process. She slept most all day yesterday except to wake up to take a sip of water or suck on a piece of ice.
I went to work this morning while Steve stayed home. When I got home he said she wasn't doing well. She hadn't drank much of anything at all. She wasn't drinking like they said she has to. So we called the doctor's office. The doctor himself even called us back. And they had us come back in for an IV of fluids. They said she was getting dehydrated but not too much yet. After the IV, we got her to drink some, and she's drank a little milkshake since we got back home. If she can't keep drinking, they said she'd have to go to the hospital, but we want to avoid that.
She does look better than she did before the IV. She's still hurting and not opening her mouth, but is more awake and has more color.
Tuesday, October 21, 2008
By 6:00p.m. the day of surgery, Jessica's throat was hurting severely, to the point that she didn't want to open her mouth or swallow her own spit. There were tears, and it's so hard to see her in so much pain! She wouldn't try to talk, but wrote us notes on her white board instead. It hurt extremely bad to even sip water, and the doctors have stressed that she must keep fluids going to keep her throat moist, or she could be making another trip back to the operating room and starting over. It was a long hard night for her and we didn't get much sleep. And it seems that we may have several more days of this.
Monday, October 20, 2008
Well, it went well. And all the staff at the surgery center were very nice. They answered all my questions, even when I asked more than once! And relieved my fears about surgery in her situation. We had her magnesium and potassium levels checked at the end of last week before the surgery. Her potassium was normal at 4.4 with a normal range of 3.4-4.71, but her magnesium was still slightly low (even though she's taking 400 mgs a day) at 1.6 with a normal range of 1.7-2.4. So they had assured me that she would be ok.
The doctor said her tonsils were badly infected, and took out her adnoids also. I was pleasantly surprised at how well Jessica came out of the anesthesia. And no nausea. When we got back to recovery, she was sitting up in her bed talking and drinking, and it wasn't long until they said she could get dressed. So, with a surgery time of after 8:30, we were home by 11:00! She's on the couch resting now. Kind of tired and her throat hurting, but better than I'd thought she'd be!
Praise God! And also for the fact that my weekend long migraine subsided in time.
Sunday, October 19, 2008
The weekend's been pretty good. Jessica's preparing to be down for a while after tomorrow's surgery, so she wanted to get some horseback riding in. She rode yesterday morning, and has gone to see Mia again tonight, since she knows she won't see her for several days. Jessica's a little tired today, but holding up ok.
She went to the school last night to cheer on her friends at the dance team competition. She was the one dancing, instead of sitting in the stands, last year. She just stayed for an hour - long enough to see them perform.
Tomorrow is her tonsillectomy. Please pray with us that all goes well and she has minimal down time afterwards.
Posted by Laura (aka Mom) at 10/19/2008 05:19:00 PM
Wednesday, October 15, 2008
Jessica remained in bed all morning. Breakfast in bed. Lunch in bed. And not for the luxury of it! She wasn't feeling well today. Really tired. Maybe this is due to the excitement over the weekend. She sat in bed this morning and we worked on her online history class. By mid-afternoon she moved from the bed to the couch. The homebound teacher came for her 2 hours allotted for the week, and they're working on getting through a little bit more of it, but it's slow going.
Posted by Laura (aka Mom) at 10/15/2008 05:21:00 PM
Tuesday, October 14, 2008
Jessica's been tired the last few days (with headaches), but pushing on on her schoolwork. My dad's been over helping her with Algebra for an average of 5 hours a day the last 3 days. I think she's sick of Algebra! Besides being so behind in schoolwork, she has another Algebra interim test coming up this Friday that she hasn't been given any instruction on. She hasn't been in class in a month, and has just barely started her online classes. And on top of that, the online class isn't teaching what the test will be on, so my dad's been helping her cram for the test. He said she's having trouble remembering what they've gone over, which I'm sure is because she's so worn out. And, today she is - worn out.
Posted by Laura (aka Mom) at 10/14/2008 05:06:00 PM
Saturday, October 11, 2008
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.
Posted by Laura (aka Mom) at 10/11/2008 10:00:00 PM
Friday, October 10, 2008
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.
Posted by Laura (aka Mom) at 10/10/2008 05:01:00 PM
Thursday, October 9, 2008
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!
Sunday, October 5, 2008
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.
Posted by Laura (aka Mom) at 10/05/2008 09:30:00 PM
Friday, October 3, 2008
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, October 1, 2008
Another bad sore throat, and just a so-so day. Jessica was still in her robe till early afternoon.
Posted by Laura (aka Mom) at 10/01/2008 07:45:00 PM
Tuesday, September 30, 2008
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, September 29, 2008
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!
Sunday, September 28, 2008
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.
Posted by Laura (aka Mom) at 9/28/2008 08:30:00 PM
Friday, September 26, 2008
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.
Posted by Laura (aka Mom) at 9/26/2008 10:04:00 PM
Wednesday, September 24, 2008
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.
Posted by Laura (aka Mom) at 9/24/2008 04:45:00 PM
Tuesday, September 23, 2008
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.
Posted by Laura (aka Mom) at 9/23/2008 06:22:00 PM
Monday, September 22, 2008
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, September 21, 2008
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.
Posted by Laura (aka Mom) at 9/21/2008 09:25:00 PM
Saturday, September 20, 2008
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.
Posted by Laura (aka Mom) at 9/20/2008 10:00:00 PM
Friday, September 19, 2008
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...
Posted by Laura (aka Mom) at 9/19/2008 12:40:00 AM
Thursday, September 18, 2008
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.
Posted by Laura (aka Mom) at 9/18/2008 09:40:00 PM
Monday, September 15, 2008
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...
Posted by Laura (aka Mom) at 9/15/2008 05:35:00 PM
Tuesday, September 9, 2008
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.
Posted by Laura (aka Mom) at 9/09/2008 05:52:00 PM
Monday, September 8, 2008
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...
Sunday, September 7, 2008
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!
Posted by Laura (aka Mom) at 9/07/2008 10:00:00 PM
Friday, September 5, 2008
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.
Posted by Laura (aka Mom) at 9/05/2008 09:33:00 PM
Friday, August 29, 2008
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?
Posted by Laura (aka Mom) at 8/29/2008 05:03:00 PM
Thursday, August 28, 2008
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.
Posted by Laura (aka Mom) at 8/28/2008 09:00:00 PM
Wednesday, August 27, 2008
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, August 23, 2008
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.
Posted by Laura (aka Mom) at 8/23/2008 08:30:00 PM
Friday, August 22, 2008
Another rough day; another missed school day. Jessica didn't feel good again today. Her legs seem to be better, but she's exhausted. She's taken a couple of naps at least. Actually she was in bed or laying down most of the day. So, she didn't make it to school again today. I called the Special Education coordinator today to let her know it wasn't going well so far. I did email the teachers today for make-up work, and they didn't respond.
It's been a rough week, but we'll keep on keeping on.
Posted by Laura (aka Mom) at 8/22/2008 09:00:00 PM
Thursday, August 21, 2008
This morning Jessica texted me "Im tired .... And my fingers are really swollen this morning." She evidently didn't sleep well last night. She wanted to try to go to school, but at the last minute decided that she couldn't make it. She didn't look good. She really didn't feel well, and went back to bed and slept for 3 hours. So, she's missed her first day, only on our 4th day into the school year.
We had a scare tonight. Jessica wakes up frequently with her fingers swollen and hurting, but tonight her feet and ankles were swollen and her calf muscles were tight and hurting. It was to the point that she had trouble walking from the kitchen table to the couch. After propping her feet up for a while, the swelling and tightness has lessened. I'm considering sitting up to watch her sleep tonight.
Posted by Laura (aka Mom) at 8/21/2008 10:45:00 PM
Wednesday, August 20, 2008
Today Jessica felt better during the day.
But tonight she was working on her history homework, and starting to get stressed, almost in tears. And, she doesn't need to stress! The teacher gave them (today) 54 vocabulary words to write out with their definitions and a detailed explanation about it. He gave an example and it wasn't a brief example! So, at number 22, she was almost through with her 3rd handwritten page. She was worried about getting it done. It's due Friday. We'll take this one day at a time...
Posted by Laura (aka Mom) at 8/20/2008 09:00:00 PM
Tuesday, August 19, 2008
I was at work this morning and got a text from Jessica saying, "I dont feel real good this morning. I didnt sleep good last night b/c everyway i turned, my body ached and my throat hurts hurts pretty bad :( "
She managed to fix herself some breakfast by pulling the bar stool up to the counter to sit while making it. She asked if my parents could come over to be with her, and they did. When I asked her if she thought she could make it through both of her classes or if she wanted to do her second one homebound, she said she feels like she's missing a lot if she does homebound. She made it through the day, but tired and achey. It wasn't a very good day. She's going to try a couple more days of school like this.
Posted by Laura (aka Mom) at 8/19/2008 09:00:00 PM
Monday, August 18, 2008
Matthew had a hard time going to school, but afterwards said he had a good day!
Jessica went to her first class at 12:07p.m. and made it through both (2 1-1/2 hour classes) today. She had Algebra homework too that's taken her a little while to get through. High school gets their school supply list on the first day of class, so she came home with things we needed to go buy. She said she didn't feel up to going with me to Wal-Mart, so I went by myself. When I asked her if she thought she was going to be able to handle both classes at school, she said she didn't know because she's pretty tired tonight.
Her History teacher said if anyone sleeps in class they'll have to stand at the back of the room. Jessica actually fell asleep last semester in science because of her CFS. Her Algebra teacher said that attendance and participation are 6% of their grades. I hope this doesn't pose a problem. We still have to have our 504 Plan meeting so these things may be something to bring up there.
When I put her to bed, she said her whole body ached - her legs, her neck, her arms, her whole body. We haven't had this. Maybe it's from carrying her books to school, and she's not used to carrying anything at all lately?
Posted by Laura (aka Mom) at 8/18/2008 09:00:00 PM
Sunday, August 17, 2008
Someone actually wrote asong about CFS. At http://www.rescindinc.org/everybody.htm if you scroll down and right-click the hyperlink, you can download the MP3 file of a beautiful song written by an M.E./C.F.S. sufferer for the R.E.S.C.I.N.D. charity. The idea is that if you like it, you can make a donation to the charity.
Here are the lyrics, for if you want to sing along:
Everybody Knows About Me
By Susan Wenger of the indie/pop group Cinder Bridge
Here I am again, sitting by the window
In my small apartment on the 7th floor.
Keep myself occupied, by looking at the traffic
As if I lost the right to ask for more.
My body feels like it’s moving under water
As I lift a cup of coffee to my face.
I think about the things I’d like to try and do today
But somewhere in the middle lose my place.
Thick fog, hazy brown, the two-ton weights that pull me down
They don’t insist if no-one else could see.
Everybody knows about the failings of the down and out
And everybody knows about me.
I had a good job, had some good friends,
Had a life I could look forward to when I woke up each day
And then the fog rolled in, consumed them one by one
’til there was nothing left for it to take away
Sometimes I count it as a victory when I manage
Just to drag my aching body out of bed
The doctor’s mystified, could not produce an answer,
So they told me it was all in my head.
’cause if I wanted to I could shake this yuppie flu
Straighten out and set myself free.
Anyone could clearly see, we all choose our own destiny
And everybody knows about me.
Does it make it easier for you
To think there must be something I could do?
Rise like a phoenix from the ashes of this solitary world.
So I remain here, sitting by the window,
Watching all the people with their lives to live.
I would give anything to go outside and join them
But today I don’t have anything to give.
And still they have no doubt,
I’m looking for an easy out
And this is what I wanted secretly.
Everyone will have their say,
They shake their heads, they walk away
And everybody knows about me.
Everybody knows about me.
Everybody knows about me.
Posted by Laura (aka Mom) at 8/17/2008 08:00:00 PM
This (CFS) can be sad or scary, or just a little overwhelming when trying to figure out how to handle things like school, work, etc. And it can be a lonely place, especially when there aren't many that understand this illness. But Jessica is so positive and that helps us all. This week school starts, so it will be a testing time for Jessica to see how much she can handle. And Matthew starts middle school and is nervous about it. And my job hours will have to be reduced starting this week. Besides our transitioning, we have an unspoken prayer request for this week...
Posted by Laura (aka Mom) at 8/17/2008 12:01:00 AM
Saturday, August 16, 2008
Today was our last Saturday of the summer before school starts. And we wanted to make the most of it together. So, we planned a day trip to the lake for swimming and fishing. And my parents joined us. The weather was perfect. The lake was so peaceful! It was a good day. Jessica pushed on for the fun. But she is tired! I hope she feels ok tomorrow.
Jessica's been able to sleep in all summer. Today I tried to wake her up at 8:30a.m. to take her pills, so we could get on with the day. She didn't budge, didn't respond. I gave up. It was kind of reminiscent of several months ago when trying to get her up for school without success. School starts in 2 days.
Added at 10:30p.m.: While putting Jessica to bed tonight, she asked me how long the IV was supposed to last, because she thinks it is wearing off. She said she doesn't feel good, her whole body is worn out, and her head hurts.
Posted by Laura (aka Mom) at 8/16/2008 08:21:00 PM
Friday, August 15, 2008
The doctor's office called Jessica yesterday as a follow-up to see how she's doing. They ran down their questionnaire list for her to rate how she feels - i.e. tingling/numbness, headaches, sore throat, fatigue, etc. And after she rated everything, they said "so, you're about the same?" Jessica did tell them that her headaches had been better. And, to think of it, they have! They used to be every day. I was also thinking tonight that I hadn't gotten a late night or middle of the night call or text from her in a while, so I checked. And the last late night text saying she couldn't sleep and her throat hurt or she was having leg pains etc. was August 6th. So, 8 better nights! We need to remember the good times.
Today she's been pretty good. My parents took the kids to get some school things. She's just a little tired, but doing ok.
Posted by Laura (aka Mom) at 8/15/2008 07:45:00 PM
Thursday, August 14, 2008
Jessica's so-so today. She's a little tired, I can tell. The kids stayed home and just hung out today watching tv or playing on the computer. Jessica worked some on another tote bag sewing project.
I emailed her teachers today to give them a heads-up. I got a response from her Algebra teacher telling me the times she does tutoring (I didn't ask for tutoring!), and that they do a large amount of work in her class and the time lines for turning in the work needs to be adhered to. So much for working with us! I hope this doesn't turn out to be a problem.
We had gotten a letter from Jessica's doctor for the school that states:
To Whom It May Concern:
Jessica is a patient under my care. She has been diagnosed with Chronic Fatigue Syndrome, Adrenal Insufficiency, [etc.]...
Chronic Fatigue Syndrome is an illness that affects millions of Americans. Symptoms vary amongst individuals and commonly include severe fatigue, sleep disturbances, cognitive problems (commonly called "brain fog"), muscle pain and multiple infections. In Jessica's case, she experiences sore throat, headaches, extreme fatigue, and lack of focus/poor memory.
My recommendations are as follows:
- Please allow Jessica to attend only one-half day of school to include 1-2 periods as able to attend in the afternoon.
- Please allow Jessica to have an extra set of textbooks to leave at home.
- Please allow Jessica reduced homework assignments and extra time to complete schoolwork.
- Please do not penalize Jessica for late work or absences due to this illness.
Posted by Laura (aka Mom) at 8/14/2008 06:35:00 PM
Wednesday, August 13, 2008
Jessica seemed to have a pretty good day. The kids both had dentist appointments, and then hung out at my parents house the rest of the day. Jessica finally finished her summer book essay! Whew!
We ended the day with a movie - Nim's Island. If you get the chance to watch it, it's a really cute movie!
Posted by Laura (aka Mom) at 8/13/2008 10:00:00 PM
Tuesday, August 12, 2008
Today was my day off from work, my last day off of the summer, so the kids and I made the most of it. It's a cloudy day, so we did inside things. We went to a pottery painting place in Bryant, and the kids painted some pottery (a bowl and a car). Then to McDonalds, and Payless for school shoes. The candy store because Matthew had a gift card there. Wal-Mart for Jessica some fabric for her sewing projects (something easy for her to do when she's house-bound). And then Chuck E. Cheese - Matthew's choice of course. Then Steve met us and we went our separate ways, as they both had doctor's (or orthodontist) appointments.
Jessica was having a pretty good day, or at least held up pretty well!
Posted by Laura (aka Mom) at 8/12/2008 07:00:00 PM
Monday, August 11, 2008
Jessica was just so-so today. She had a headache, and was mostly tired. She said that she couldn't have made it through her two classes today. School starts next week.
Posted by Laura (aka Mom) at 8/11/2008 05:43:00 PM
Friday, August 8, 2008
Jessica probably had her best week this week since early April. She was focusing better, had more stamina, and was more animated, perkier, and lively. It was good to see! Tonight she's laughing and playing with Matthew.
Sunday she was tired, but that was after going to the lake for a picnic (in the heat) and even playing in the water the day before. Wednesday she had a headache, and was tired, but that was after going to the water park and swimming - quite a bit - the day before. She got up not feeling too good this morning (Friday) - tired - but later bathed the dogs, took a nap, and then got to go see her horse. She's also been working on sewing projects this week. She's not had a day where she's symptom free, but she's had a better week! Yahoo!
We don't know if her good week is mostly due to the IV, the medicine/supplements, or all the many prayers that are going up for her. One thing for sure is that we're happy to see it!
Posted by Laura (aka Mom) at 8/08/2008 09:59:00 PM
Thursday, July 31, 2008
We met with the school counselor and then the Special Education Department today, and it went better than I could've hoped for! Her counselor is great! And she sympathized, and even hugged me when we left.
They basically said they'd do whatever we needed! The counselor suggested that we cut Jessica's class schedule for the fall back from 4 1-1/2 hour classes to just 2 classes. I didn't know that was an option. She showed us how that wouldn't get us behind (if it doesn't continue like that semester after semester of course). We took her out of pre-ap just for this semester, and she's going to take Algebra II, and U.S. History. The counselor handpicked her teachers, and made them afternoon classes. If it turns out that she can't do them both, then she can do U.S. History at home online or with a homebound teacher. They're going to set up a meeting next week with the 504 Coordinator, the counselor and us to work out her 504 (Disability) Plan. She said an extra set of textbooks for home wouldn't be a problem, they'd give us extra parent excuses for absences, and they could put in there for the teacher to give Jessica the teacher's review notes. Jessica's not happy with us for taking her out of pre-ap, because it makes her feel less smart, but she likes that she doesn't have to work to get to school and can get there after lunch.
Jessica was so-so today, a little tired, kind of draggy. I guess she's making up for the shopping. We had to go to an eye doctor's appointment today, since she's had trouble seeing the writing at the front of the classroom. So, she'll be getting glasses/contacts soon.
Posted by Laura (aka Mom) at 7/31/2008 08:48:00 PM
Wednesday, July 30, 2008
Jessica was not too bad today. I don't think she got a big boost from yesterday's IV, but instead today was more like one of her "good days." It's hard for her to go up our stairs sometimes, and she was holding onto me to help her up this afternoon.
She did go to Old Navy today with my parents to finish out her school clothes wardrobe. Just one store. And she and Matthew went with me to see Mia, to soak her foot. We got a call from the stable owner while we were in Dallas that her foot had an abcess. It seems to be doing better today, and she's walking on that foot better now.
Jessica's a little tired tonight.
Posted by Laura (aka Mom) at 7/30/2008 08:08:00 PM
Tuesday, July 29, 2008
CFS sure is multi-systemic. There's several things going on in her body, but the doctor did give some hope, though it may not be soon. I'll try to give you the short version of the doctor's visit.
This receipt shows a diagnosis of Adrenal Insufficiency, Chronic Fatigue Syndrome, Endocrine/Hormone Disorder, Fibromyositis, Hypothyroidism, Pituitary Insufficiency, Viral Infection, and Bacterial Infections. Her blood work from last time showed:
- She was on the low end of normal in her Natural Killer Cells (part of the immune system that rejects tumors and cells infected by viruses.) .
- Her white blood cell count was low. It was 4.3, and should be above 7. Her absolute lymphocytes were 1367 and should be above 2000.
- She was slightly hypoglycemic with her hemoglobin level at 5.1.
- Her cholesterol level was low, at a level of 123, where it should be around 150. He said it could be that her body isn't absorbing like it should.
- Her Aldosterone level was 5, and should be at 20. This shows that she has OI (orthostatic hypotension or orthostatic intolerance), and why she is on the Florinef.
- Her DHEA Sulfate level was low at 25, and should be closer to 200 for her age. This is a hormone, her memory hormone - that explains some things! It strengthens muscles, stimulates, immunity, increases energy, fights depression and anxiety, and enhances memory. He has now given her a supplement for this.
- Her thyroid T4 level was low (1.0 and should be 1.5), her T3 level was low (316 and should be greater than 360) and Reverse T3 was off (should've been 1/3 of her Free T3 (which was 307) but was 210.
- Her magnesium was low at 2.6 and should have been 4.0-6.4. This effects the muscles. We're to get some magnesium at GNC. I've been told this could also help her sleep better!
- Her Free and Total Cortisol level was low, at 7 and should be 17. And her Free Cortisol level was low at .15 and should be 1.5. But he already had her started on this.
- Her Pregnenolone was low at 30 when it should be 130-230. Again, this has to do with memory!
- Her Vitamin B12 was low at 512 when it should be greater than 700. She's on multi-vitamins, but he talked about getting a B12 that goes under her tongue.
- Otherwise, her Sed rate was good, mercury, lead, sodium, potassium, iron, and all the many other things they checked for seemed to be within range.
All these different things (thyroid, cholesterol, pregnenolone, DHEA, Cortisol, Progerterone, Aldosterone, Tertosterone, Estradol) all work together, so when one is not working, it messes something else up. Then starts the cycle. But she's already on the thyroid medicine, Cortisol, Florinef for the OI, and other things to boost her system etc., so he said "We're on the right track." He did say that it's not a quick fix. The minimum time frame to feel better would be six months, or it could be 2 years. He did say that with her being a child, she has a good chance of recovering. He also seemed to think that she'd be able to get off of all her pills except for her anti-virals at that point. (It's not something that ever goes away, but instead attaches to your DNA.)
We asked him about her diet. She likes chicken nuggets, and doesn't like fruits or many veggies. (Well, when talking about veggies, she told him that she likes potatoes! Ha!) He suggested a macrobiotic diet with whole foods when possible.
We talked about school, and what to do there. He said we'd just have to see what she's able to do, and suggested a lighter load this semester. He said for us to tell him whatever we needed in the school note (i.e. 1/2 day school, an extra set of textbooks for home, etc.) and he'd write it.
She got an IV suggested for energy, which contained ascorbic acid, magnesium chloride, calcium gluconate, B-complex, B12, D-Ribose, etc. We thought it would give her a boost. But after it started, her arm was hurting and she started shivering(chills), eyes burning, nauseas stomach (I thought she was going to throw up), and ended up with headache. She felt horrible. It was horrible. They said that was normal in some people, and she may feel bad tonight, but then she should feel better. The nurse said it would be worth it, but i don't think we want to do that again! We let her rest in their recliners for about 40 minutes (until they were closing) before we got in the car to head back home.
We did get to take a "lunch break" from the doctor's office to go to the Galleria Mall, which was just about 2 miles from the clinic. Jessica can push herself to go shopping! And we got a few school clothes and looked around until she was really tired!
Monday, July 28, 2008
Jessica's day started off slow, kind of like yesterday, but she perked up a little as it went on. We even made a quick run to Hobby Lobby for her to get some fabric for some sewing projects. I could tell she was tired and it was hard on her, but it was also something for her to get excited about doing, which is good.
We got a call from the Dallas clinic confirming Jessica's doctor's appointment tomorrow. I was a little puzzled, as I told her she'd called last week to cancel it, but she said she cancelled our August appointment. So, we're making a mad dash to Dallas this afternoon.
Posted by Laura (aka Mom) at 7/28/2008 03:00:00 PM
Sunday, July 27, 2008
Jessica was pretty tired today! When I asked her if she wanted to go to the store with me to try to find her a white noise machine, she said she wasn't dressed for it and didn't feel like getting dressed. IOW she was too tired and wasn't up to it.
She hasn't really done anything lately. And we did increase the Florinef to just what our prescription says - .1mg. So....?
If today was a school day, she probably could've pushed herself to go, but she wouldn't have felt good the next day.
Posted by Laura (aka Mom) at 7/27/2008 09:53:00 PM
Saturday, July 26, 2008
A pretty good day. We just hung around the house, watched movies, etc. Jessica was a little tired, and had a little headache, but seemed to be pretty good today for the most part.
Posted by Laura (aka Mom) at 7/26/2008 09:51:00 PM
Friday, July 25, 2008
Today was better. Jessica had a little headache, and was a little tired, but better. Though she didn't sleep last night. She was home all day today taking it easy.
She read a chapter in her summer homework book. It seems to be slow going, as she reads five minutes and can't keep her concentration.
Matthew got to go to the water park/amusement park today in place of yesterday! Along with going fishing and catching 2 fish. He and Steve had a nice father / son day.
Posted by Laura (aka Mom) at 7/25/2008 07:18:00 PM
Thursday, July 24, 2008
Today's Matthew's birthday. Steve & I both are off work. Matthew's original plan was to go to the candy store to use a gift card he got, go to the water park, then Chuck E. Cheese, and dinner at Macaroni Grill (they have good chocolate birthday cake!).
We didn't go to the water park today as Matthew had planned for his birthday. Jessica wasn't up to it. So we went to the movies instead (Space Chimps). Jessica didn't really feel like getting out at all probably. She told me she's "tired, but doesn't want to mess up Matthew's birthday."
We went to Chuck E. Cheese after the movies. Jessica played a couple of games, but mainly sat, and when their grandma showed up, Jessica tried to make pleasant conversation until she couldn't anymore. She wasn't feeling well at all - headache, stomachache, worn out, etc. The stomach ache turns out that she took her pills on an empty stomach. We needed somewhere closeby for her to lay down, so we went to my parents instead of Macaroni Grill, but got take-out from there still.
Jessica slept for a little bit, and later in the evening felt better. It seems that mornings are worse, and late evenings can be better sometimes. Though she doesn't sleep well at night.
Posted by Laura (aka Mom) at 7/24/2008 09:13:00 PM
Wednesday, July 23, 2008
Jessica hasn't felt good today. Her throat has been hurting and she's really tired. Worn out. She really wasn't that active yesterday, so is she recouping still from Saturday? She stayed in her robe most all day. Not a good day.
And I didn't have a good day from struggling with having to be at work while she wasn't feeling well.
Posted by Laura (aka Mom) at 7/23/2008 05:50:00 PM
Tuesday, July 22, 2008
Jessica was so-so today. Today was my day off. It's also been declared Mia's birthday. Since she's a rescue horse, we don't know her real birthday. And today is in the middle of Jessica's and Matthew's birthdays. So, we went out to the stables to wish her a happy birthday! When Jessica got in the car, first thing, she said she was tired. There was no riding or anything strenuous today.
Last night I asked Jessica if she thought she could make it through a full day of school now, and she said no. School's just a few weeks away, so we're starting to weigh our options, which seem to be:
- Send her to school for regular classes to see how she does. But if we have to change it, it may be hard to get the classes she needs later when they’ve started and are full.
- Change her classes to less stressful classes. Right now she has 4 pre-ap or ap (advanced placement) classes. Should I move her down to the regular classes? Should I get her out of Spanish, because she can’t seem to remember very well right now? Her schedule currently is:
U.S. History (AP)
Algebra II (Pre-AP)
Science - Biology (Pre-AP)
Spanish I & II (all year)
Health (9 weeks)
Digital Photography (9 weeks)
- Send her to school for a half day, and do the rest at home using a homebound teacher 4 hours a week. Wouldn’t this still leave her with the same amount of work? Also, I’d have to convince our school district that they have to allow partial days.
- Do all at home with a homebound teacher, still only 4 hours a week (all the school district allows). This would require doing most of it on her own.
- Homeschool her. I homeschooled her for kindergarten and half of first grade, but that was easier! 10th grade classes would probably require me to learn a lot as I taught her. It would also probably mean me quitting my job and losing that income, which we could do with pinching pennies.
Tonight it's more apparent that she's tired.
Posted by Laura (aka Mom) at 7/22/2008 05:47:00 PM
Monday, July 21, 2008
Today didn't seem too bad. My parents took the kids to look for Jessica a new shirt at the western store. And she did ok there. She wants to do competition with Mia, and has found a trail riding competition that she thinks Mia could do. It's in April.
By the time I got home from work, she had a headache and wasn't feeling as good. But she managed to poke/wrestle with Steve a little when he got home!
Posted by Laura (aka Mom) at 7/21/2008 10:00:00 PM
Sunday, July 20, 2008
Jessica is tired today. Exhausted. Not feeling too good. But I asked her if it was worth it, and she said "yes!" She had fun yesterday.
She took a 2 hour nap late this afternoon.
Posted by Laura (aka Mom) at 7/20/2008 09:00:00 PM
Saturday, July 19, 2008
Today’s Jessica’s 15th birthday! She had a big day planned, and we were going to let her do whatever she wanted to do today (even if it caused a crash tomorrow). She did pretty good today, but she was going to be ok for her big day if she had to make herself! She held out pretty well.
We got to Lake DeGray (45 minutes away) at 10:00p.m. for a horseback trail ride by the lake. It was actually more through the woods. It was an easy, peaceful, shaded, cool ride. Then we had a picnic lunch, and went to the swimming area of the lake to swim. Jessica did ok, but didn't stay long there. I think she knew that that would tire her out. On our way home, we stopped by a horse tack shop and she spent all of her money on some chaps. She loves them!
My parents came over to wish her a happy birthday and we had cake.
Then she had to go see Mia on her birthday! Just she and Steve went. She said she rode for 30 minutes and knew she was getting tired and got off. She brushed her down, sprayed her down, and waited on Steve to finish visiting with the stable owners. I could hear the tiredness in her voice when she called me on her way home. She didn't feel good when she got home.
But she had a good birthday!
Posted by Laura (aka Mom) at 7/19/2008 10:00:00 PM
Friday, July 18, 2008
Tonight was Matthew’s birthday party with his friends - roller and ice skating. The party was from 7:30p.m. until 9:30p.m., but the boys were having so much fun they stayed an extra hour skating. Jessica asked to leave at 9:30, and we had taken two cars for this reason. She told me "she held out as long as she could" [for Matthew].
Posted by Laura (aka Mom) at 7/18/2008 10:30:00 PM
Thursday, July 17, 2008
Jessica is tired today. It doesn’t seem like she did much yesterday to cause her to be tired. But she doesn't feel good today.
Posted by Laura (aka Mom) at 7/17/2008 09:33:00 PM
Wednesday, July 16, 2008
Jessica stayed in all day while I was at work, and seemed to be doing pretty good. She even went to Wal-Mart with me after work, and walked around to shop with me. I could tell she was getting a little tired when we were almost through grocery shopping, but it does her good to get out.
Posted by Laura (aka Mom) at 7/16/2008 09:33:00 PM
Tuesday, July 15, 2008
Saturday is Jessica’s birthday, and she has said that she doesn’t want an actual birthday party this year. This will be the first year that she won’t have a party, first year that we won’t have a bunch of girls together for some kind of party. She told me that it doesn’t feel like her birthday, and I think it’s because we’re not having all the festivities. We have been doing more quiet things lately. Today we did celebrate though with a friend. We went out for pedicures, lunch at McDonalds, to the movies to see Wall-E, and then stopped by to introduce her friend to Mia. It was a good day! Jessica had gotten in the car this morning saying she was tired, but she held up real well all day.
Posted by Laura (aka Mom) at 7/15/2008 09:32:00 PM
Sunday, July 13, 2008
Jessica slept till almost 10:00a.m. again! She's not too perky today. Tired. When I was about to go out to Target, she said she wanted to go with me, but when I asked her if she felt like going, she said no, so she stayed home again. She held up around the house ok today, but not much stamina.
She texted me from her bed at 11:00p.m. with a headache and not able to sleep.
Posted by Laura (aka Mom) at 7/13/2008 11:00:00 PM
Saturday, July 12, 2008
Jessica slept in until 10:00am this morning! She was tired today. Not as good as yesterday. She had to sit down and rest, but did ok.
Posted by Laura (aka Mom) at 7/12/2008 08:54:00 PM
Friday, July 11, 2008
Jessica slept till 9:00a.m. this morning, and woke up feeling better! She got out today with my parents, and has felt pretty good.
Posted by Laura (aka Mom) at 7/11/2008 06:26:00 PM
Thursday, July 10, 2008
Jessica said today was a lazy day. She woke up telling me she didn’t feel very good. She felt worn out. I had to go to work feeling like I had a ton of bricks on my heart, and struggled with it all day. I need a job I can do from my home computer!
Jessica tried to read in her summer reading book today, but she said her mind kept wandering, and she couldn't focus.
Jessica called me with a phone message, saying the pharmacy had called and gave me an 888 number to call the lady back. She had written it down, and was afraid she transposed the last two numbers. I tried it both ways. The numbers didn't work. I called to get the correct number, to find out that Jessica had only 2 of the numbers right in the 10 digit phone number! Things like this, her lack of focus, and poor memory could be a problem with school...
Posted by Laura (aka Mom) at 7/10/2008 09:00:00 PM
Wednesday, July 9, 2008
Today was so-so. Jessica laid on the cot all day. Yes, cot. We have, since her herx reaction a couple of weeks ago, set up a cot in the living room in front of the tv, where she's close to everyone and doesn't have to go up and down the stairs. The way my kids sleep, we've decided we could save money on a smaller one room house!
Jessica didn't feel well last night at bedtime - sore throat, eyes burning and tired. She went to sleep with a cold rag on her head. Today she laid on the cot all day. Her throat hurts, and she is tired!
Posted by Laura (aka Mom) at 7/09/2008 08:59:00 PM
Tuesday, July 8, 2008
Today was my scheduled day off work. We decided to try the water park again. Jessica was some tired, but said she was ok. We floated in tubes around the lazy river 4 times, and, after just that, Jessica had had all she could do. She tried to go with Matthew to the wave pool, but got halfway there, and said she was done. So we left. She told my mom that the walking wore her out. I had to park in the back parking lot, but I dropped them off at the door, and picked them up at the door so she wouldn't have to walk much.
She's perked up since we got back though.
Posted by Laura (aka Mom) at 7/08/2008 08:19:00 PM