Skating Through This

We had a normal Saturday today. We all straightened up the house a little before my parents came over. Jessica stayed home and worked on a school project while Steve and Matthew and I went grocery shopping and to Game Stop (that's why Matthew went along).

Jessica had asked what we were going to do tonight. Lately she hasn't wanted to stay around the house. Maybe it's making up for being around the house so much over the past two years. (Wow - It's been 2 years this past week!) But mostly I think it's being a teenager and being able to drive now. I actually miss time with her, but that's just me getting used to having a 16 year old.

So, tonight on cue, she came down asking if she could get some friends from church together and go to the ice skating rink. They met there at 6:00, and I told her to be home by 9:00. She called at 8:30 saying they were having so much fun (and I could hear in her voice how much fun they really were having) and could she stay for a little long - maybe till 9:00? I love that she has so many friends now, is able to get out and be with friends, and the fact that she was having fun. So, as it turned out she stayed till 9:30. I guess we'll see if that was a good decision in a couple of days.

This skating party got me thinking about Matthew's birthday skating party in July of 2008, 7 months after Jessica got sick. She did put on roller skates that day and I think she went around the rink once, but that was all. She held out for a couple of hours, and then she and I had to leave before he was through having as much fun as he could with his friends.

I am so glad that she is able to do things now, can be more active, have more of a life, and enjoy being with her friends. We've come a long ways since then, and we are thankful!

School Started Back

School started back today. Jessica is going to school full time with 3 AP classes. She's taking AP English, AP World History, AP Environmental Science, and Orientation to Teaching. The three AP classes could be hard, as they are supposed to be concurrent credit for college. This semester might need a little more focus. We'll see how it goes.

Doctor

We came home to mail in the mailbox from Jessica's doctor's office. When there's unexpected mail from them, it's not always good news. The last time we got unexpected mail, it was to announce a rate increase. This time it came with news that her doctor has gone on to new endeavors. Her doctor is no longer there! It was such a struggle finding him...finding someone that knew about and understood CFIDS! I guess that's what the clinic specializes in, so we still have a doctor there, but we'll be starting all over with someone new.

Recap

Since I'm so far behind in blogging, I'll try to do a recap.

Doctor's Visit
We had a telephone appointment with her doctor on November 5th, and went over her labwork from the last visit. Her EBV levels are still high, as well as her Mycoplasma pneumoniae. Her Cortisol, DHEA and thyroid was still off. Her Aldosterone level was still low, but he doesn't want to increase her Florinef any more than it is right now. Her B-12 and Magnesium looked better. He adjusted her medications slightly and said we'd meet again in 3 months.

School
Jessica made it through the fall semester at school. She made it to the end missing only 3 days, which is wonderful! Since 3 days (along with good grades) is the maximum to be able to miss certain semester exams, it got very close. She wasn't feeling well that last Monday, but went to school for her one class that she'd have to take an exam in if she missed any more, and then back to bed.

Overall
Jessica has done really well this semester, up until around Thanksgiving.

We went to Mount Magazine with my extended family at Thanksgiving. It was great visiting with everyone, but when we all went hiking, Jessica said she didn't feel that she was up for it, so she stayed back in the room. My parents also stayed behind, so she wasn't alone, but I just hated that she was missing out. And while we were having lunch, she had to take a nap.

Jessica (and I) signed up to ring bells for the Salvation Army this Christmas season. I thought it would be an easy way for her to get some community service points. She wasn't allowed in to the National Honor Society this year (even though she had the grades) because she didn't have enough community service. (Though she wasn't able to do anything last year.) Out of the 3 times we had scheduled to ring bells, she rang with me once, and ended up with a headache. (The headaches have become more frequent again.) This last time we were scheduled on December 19th to ring bells, she had to stay home and rest because she didn't feel good, but she saved up her energy quotient for that day to be able to go with her lifegroup to the Boys & Girls Club to have a party for them. So, it's still a matter of pacing, as anyone with CFS knows.

The weekend before Christmas, we had to skip going on a sleigh ride and looking at lights Friday night because she wasn't feeling well, and she took 2 naps that Sunday, but was able to do some shopping in between.

So, it's been a little give and take - give up something to be able to do something else - more headaches, more resting and more not feeling as good. I'm not sure why she's not doing as good. She's been more active and enjoying her friends and social life. But we're thinking that she's probably not feeling as well because she hasn't been remembering her pills as well, especially the ones she's supposed to take during lunchtime at school. Or maybe this is just CFS?

Overall, we can't complain. She's been able to be involved in things and have a life again, which is great. And she has a 2 week holiday now to rest up some.

CFS in the News

There have been several news releases out since the first week of October - that the Whittemore-Peterson Institute discovered a retroviral infection XMRV that is greater than 95% of the more than 200 ME/CFS patients tested, and they "look forward to translating this discovery into treatment options!"


Whittemore-Peterson Institute - These are the ones doing the research, and their now 31-year-old daughter has CFS. (She got it at the age of 11.)
http://www.wpinstitute.org/xmrv/index.html
and their Q&A's - http://www.wpinstitute.org/xmrv/xmrv_qa.html - There's some good / interesting information there.

CFS discovery on Good Morning America last week (video link) with Dr. Donnica Moore -
http://abcnews.go.com/video/playerIndex?id=8864348

Nature News article - http://www.nature.com/news/2009/091008/full/news.2009.983.html

It's in the Wall Street Journal too, but you have to be a subscriber to read the whole article. http://online.wsj.com/article/SB125501227713473525.html

It was also in today's (10/25/09) Arkansas Democrat Gazette - http://www.arkansasonline.com/news/2009/oct/25/lifelong-health-chronic-fatigues-virus-li-20091025/ - but you have to be a subscriber to read the whole article. I haven't read it yet, but my mom's going to save the article for us.

CFS is featured on the National Institutes of Health home page at http://www.nih.gov/. Look for the "In the News" box on the right and a link to the XMRV press release.

Here's a link to "Xplained," an article by the CFIDS Association Scientific Director about the XMRV study published on Oct. 8 in the journal Science. - http://www.cfids.org/cfidslink/2009/110402.asp

CNN reports on CFS as one of the health problems doctors still miss. http://www.cnn.com/2009/HEALTH/10/19/undiagnosed.women.problem/index.html

XMRV has generated international news coverage. The ME Association (ME is the UK version of CFS) has published this statement on its website and is also collaborating with researchers to validate the study findings. http://www.meassociation.org.uk/content/view/1042/161/

This CFIDS Association Chronicle article was published in early 2009. In "The Viruses We Live With," Association scientific director Dr. Suzanne Vernon describes how viruses like Epstein-Barr Virus (EBV) can commandeer cells and systems in our bodies to ensu...re their survival. Written before the XMRV discovery, it may be helpful background for those interested in how viruses work. (http://www.cfids.org/cfidslink/2009/110405.pdf)

Dr. David Bell's Perspective on XMRV -
Note: Dr. David Bell is a pediatrician in upstate New York who first identified an unusual outbreak of illness in his community in 1984-1985. He has been involved in patient care and research on CFS...

New York Times article - Is a Virus the Cause of Fatigue Syndrome?
New York Times Q&A with Dr. Nancy Klimas - Readers Ask: A Virus Linked to Chronic Fatigue Syndrome

Here's the CFIDS Association's take on it.

Coincidentally, the CFIDS Association kicked off a new PR campaign recently called Solve CFS - a campaign to raise $1 million for CFS research by 12/21/09.

And another good thing to come out of this so far, is that it proves that CFS is a real illness, and not psychological.

Homecoming Dance

Last night was the Homecoming Dance at the high school. Before the dance, Jessica and I had a mother/daughter day getting pampered - We both got pedicures, got her eyebrows done and a manicure, and got her an up-do at the beauty school. Ahhhh - pampering! And she looked beautiful!

Jessica went with her friend, Matt, another friend, Bree and her date, James. (I wasn't ready for this, by the way!) We all, including parents, met to take pictures first. Then the four of them went to IHOP for dinner, and then off to the dance. The dance lasted till 11:00p.m. I told Jessica to call me if she needed me sooner, but she told me she planned to stay till it was over. And she did! I picked her up when it was over, and she had a great time.

She did sleep in this morning until 10:30, ate breakfast, and then fell asleep 20 minutes later when we were watching church online (as we do often when she's not up to actually going to church). She woke up a couple hours later. We've had a quiet day at home, but she seems to be doing ok.

Last year at this time, she got to go to her Homecoming Dance for one hour - no going out to dinner before or anything else. This year she made it for the whole thing, and she had fun.

It's Been a While Since We've Had a Day Like This

Jessica woke up to her alarm enough this morning to text me from bed to say:
"I'm not feeling good :( my throat hurts; I'm really tired and I have a headache... I think I'm going back to sleep :( "
I peeked in on her, but she was pretty out of it.

She woke up at 10am and was able to get up to take a Pop-Tart back to bed with her, still not feeling too good. At noon she was sound asleep.

She woke up in time to make it to her last class. They were supposed to be workshopping (critiquing) their drafts of their fiction writing so they could edit them and turn them in tomorrow, so she didn't want to miss.

She's still tired and has a sore throat tonight, but better than this morning. She got her homework done, and she's back in bed for the night.

It's been a while since she's had a day like this.

This School Year

Jessica's actually doing really well with school and everything this semester. She had one day this past week where I got a text from her while she was at school saying she didn't feel good (really tired, sore throat...) and wanted to go home and take a nap. Since she's driving this year, she drove herself home (just 1/2 mile), took about an hour and a half nap, ate lunch and went back to school. So she only missed lunch and one class that day.

This weekend was a fairly busy weekend. Friday night Jessica went bowling with a friend. Saturday, she and I and my parents went cold weather clothes shopping for school clothes, as well as shopping for a Homecoming Dance dress. Sunday was a birthday lunch with Steve's side of the family. Then we had a Dodgeball Extravaganza (dodgeball, laser tag, sumo wrestling, electric bull riding, carnival food, etc.) at church for the youth. Steve & I were helping with the food team. It was a terrific event for the kids, which drew in 600 to 700 kids that night! And lots of fun! Jessica mainly walked around with her friends, but she did ride the bull (and has been sore since). It was supposed to last until 8:30, but at 7:00 Jessica had had enough and was tired. I left my duty of serving drinks early to take her home and get her to bed.

She still has to go to bed earlier than the normal teenager, still gets tired, still has trouble focusing on occasion, still gets headaches and sore throats... But she's so much better than last school year! She's able to have a life this year and a social life. She goes out with friends. She has friends! Actually has quite a few friends - We're having trouble keeping up with who all her friends are - which is a wonderful thing! It's especially good to see after seeing her basically stuck in the house all of last year with just us - her family.

ABC News Story on CFS

Feeling Chronically Fatigued?

Shared via AddThis

Mono Update

So far Jessica hasn't missed any more school, except for that hour and a half at the beginning of last Thursday. Yesterday I had trouble getting her up for school. She evidently didn't sleep well the night before and wasn't feeling well - tired, sore throat... But she still managed to make it to school. I wasn't sure if she'd make it all day, but she did - which is evidently thanks to the fact that she took a half hour nap in her first class!!

Jessica's friend that was diagnosed with mono on the same day last week has been sick for a week with her fever staying up at 102.8. She was really sick!

Jessica hasn't seemed to be too bad - for it to be mono. Maybe that's because of the anti-viral medication that she's on. At the directions of her CFS doctor, we increased her anti-viral last week back up to 3 pills a day instead of 1. Coincidently, a friend sent me an article that was just published about treating mono with Valtrex, the anti-viral, (as well as a new anti-viral drug not yet on the market). It just seems to confirm that we're doing the right thing!

At our family doctor's urging, I took Jessica back to get her re-tested today for mono to see if it was truly positive or not. And - it's still positive.

Rough Weekend, But Back On Her Feet

Saturday morning, Jessica was sniffing and coughing, but made it to her ACT test. She doesn't feel like she did very well, and didn't finish the math or science sections. This is when it would've been nice to have had the extended time accomodations. We'll find out her score in 3 to 8 weeks.

She ate lunch at Arby's with a friend, and then spent the rest of the day on the couch. She's still feeling blah - sore throat, coughing, etc. She was invited to a movie that night and actually asked me if she could go. I felt that she was irritated with me for saying no even though she knew she was sick and didn't need to. She even wrote on Facebook how she "HATES being sick and wants to be out with her friends." (Of course that hurts my heart, as I hate for my kids to be sick.) But by 8:00 she had curled up in a ball facing the back of the couch, not feeling well, and asking for a cold rag for her eyes.

Sunday morning she woke up not feeling well at all - coughing, sore throat, achey, head/nose stopped up, and just feeling crummy - and didn't get out of bed. I took breakfast and lunch up to her. I was wondering about the flu, but still no fever. She took an hour nap, and at dinner she made it out of bed to join us and had a smile on her face. She's not over it, but much better!

Today (Monday) I got a text from her while she was at school, saying her calves were tightening up pretty bad to the point that it hurt to walk. The nurses gave her ibuprofen and talked to me about the fact that she should be checked for blood clots. We've had this tightening problem several times before and it's not specific to one leg, but seems to be an OI issue. So, I took a Gatorade to school to help with the problem. She didn't want to miss anything anyway, and seems to be better now that she's home.

Mono or Not, It's Something

Jessica got to school Thursday by 9:30 and made it through the day, and made it through a full day today (Friday). She didn't finish all of her homework (Creative Writing 2nd draft of an essay) the night before since she didn't feel well, but she made it to class.

Since we had our doctor's appointment with the nurse practitioner instead of our regular doctor, I talked with our doctor the next day. He said we need to watch and see how she does clinically - worsening fatigue, fever, etc. Then he wants to test her again in a week, saying that the rapid tests aren't always the most accurate.

She's been feeling so-so - coughing, sore throat, kind of blah feeling - but didn't seem too fatigued for it to be mono, or not too bad. Until tonight...

Tonight, she seems to be worse and said she doesn't feel very good. She's got more cold symptoms (sniffing, coughing...).

She's signed up to take the ACT test tomorrow morning. It's a four hour test. (I actually submitted a request to get her extended time because of her CFS, but it was denied.) I'm not sure if she's going to be up to it or not.

Mono Again?

Matthew's been home sick for the past 2 days, with a sore throat, coughing, and just not feeling good. But he hasn't had any fever, so I haven't taken him to the doctor. I figured it was allergies or sinuses or something like that.

Jessica had a doctor's appointment today with the nurse practitioner at our family doctor's office. I'd prefer our regular doctor because he knows all of our history, but he was booked. Flu season, ya know. I was taking Jessica to the doctor to have a spot on her hand checked that was hurting her. It seems to be a cyst. But, she's also had a really bad sore throat yesterday and today, which she says is not her "normal" sore throat, so we had that checked too. The nurse said it is red with drainage, but didn't look like strep. Jessica found out earlier today that a friend of hers was diagnosed with mono this morning, so they pricked Jessica's finger to check, just in case. And, she tested positive for mono! Again!

How can we do this again? She had at least a mono-like virus in January of 2007. And then had EBV mono in January of 2008, which started all of this [CFS] where we are now. What does it mean for someone with CFS to get mono? I asked that question of the nurse practitioner and she said "it's not good." What does that mean?

Jessica actually doesn't feel bad right now except for a really bad sore throat. Will the fatigue hit later, or will the medications that she's on now help it not to be bad?

I think Jessica's more upset that she can't ride her horse for 4 weeks!

Teen With CFS - Through Her Eyes

The following was written by Jessica (age 16) for her Creative Writing class, posted with her permission.

A Time to Heal

In January of 2008, I came down with Epstein Barr Mono. Even though, several months later, the tests for the virus came back negative, I still felt terrible. I went to doctor after doctor and they all told me the same things: “There is nothing wrong with you,” “It’s all in your head,” and “You are just depressed.” Each time I walked away from these instances more and more frustrated. Finally in June of that same year, I went to see a Fatigue specialist in Dallas, Texas who diagnosed me with Chronic Fatigue Immune Dysfunction Syndrome, or CFS for short. CFS is a group of many problems that are going on within me, causing extreme fatigue and a series of other symptoms.

Some days I would not wake up until eleven o’clock which was very strange for me since I was normally a morning person. Once awake, imagine lying lifelessly there in bed, and not being able to move because you have no energy what-so-ever. Not only does your body feel like a pile of noodles, but your throat is on fire, and it feels like someone has taken a frying pan and cracked you on the head with it. This is how it was for me for many months even after visiting the specialist.

The doctor put me on tons of medication, trying to balance my out-of-whack system. If you were to look at my “pill case” you would have thought that it belonged to an old person on the brink of death. But no, that’s me taking thirty-five pills a day!

In addition to all of the medication, I was restricted from doing many of the things that a normal teenager would be doing: movies, sports, or even school. Anything that required much energy was an automatic no-go.

One day I was sitting in the love seat in our traditional living room watching TV when I had an urge to go out riding. I had been feeling pretty good that day so I took a chance, “Momma, can we go to the stables so that I can ride just for a little bit?” Immediately she responded from the kitchen, “No, you don’t need to get worn out.” At that moment, I could not hold it in anymore; I began screaming and crying, letting out all of my frustration and emotions that had been building up. “You won’t let me do anything!” I yelled at my mom. I became angry with my parents, the doctors, God, or anyone else I could blame for my sickness. After my crying spree was over, I thought about all the patients in the hospital with life threatening conditions, and here I am bawling because I am restricted from doing just a few things. “How selfish am I?” I think to myself. Right away I prayed and asked God to forgive me for my childish display.

A couple of weeks later, two lifegroup leaders from my church came to visit me and they gave me some words of encouragement. Ever since I had become sick, I had quit going to church altogether and (even though I hadn’t noticed it) my relationship with God was not as strong as it had once been. After their visit, I slowly but surely began attending our youth ministry more often.

As my bond with Christ began to strengthen, so did my physical health. Before I knew it, I was going to school for half a day, and back atop my horse. When I placed all my hope in Christ, He healed me. Since CFS is a chronic illness, when I say “healed” I do not mean completely. I still am not back 100%, but I am heading there. I still cannot do everything that I want to do, but I am doing more. I still have not completely adjusted to this restricted lifestyle, but I am getting used to it. This nagging condition will never go away; and I am ok with that, knowing that the Lord will use my experience to make an impact on someone else.

Still Going...

We're at the start of the third full week of school - full days - and so far, Jessica hasn't missed a day; though Thursdays have been a little rougher.

Jessica is taking Creative Writing class this semester. She picked this class and she loves it, but Wednesday evening and Thursday evening I found her in her room trying to do her Creative Writing homework, but having writer's block - or an inability to focus. She's had trouble with focusing, due to her CFS, and this is one class that will be hard on occasions like that.

We actually went to two football games this Labor Day weekend - the high school football game Friday night, and the Razorback game Saturday night. Jessica hung out with her friends in the student section Friday night at the game and seemed to do fine. She missed so much of this last year, and it's good to see her able to participate more this year.

Saturday night, she was tired, but wanted to go to the game and made it through that one just fine too - though we did consider getting a ride home at halftime (and letting the guys stay).

Sunday morning, though, she shuffled downstairs and plopped in her chair. She didn't feel good - tired with a really bad sore throat. So, we stayed home from church, and let her rest. She even passed at my parent's offer of chinese lunch buffet. But, by that evening she was able to go to the youth services at church.

So, like the Energizer Bunny takes a licking and keeps on ticking, Jessica's still going and doing pretty good.

We Made It! - First Full Week of School

Jessica made it through her first first full week of school with classes all day. It started off pretty good. The usual routine is - come home and do homework and get to bed by 8:30. She did take our dog on a short walk down the street (maybe 1/2 mile?) a couple of nights. And one day, she met some friends at Sonic for a cherry vanilla root beer and a short visit - to celebrate a friend's birthday - on her way home from school.

Most nights so far, the homework hasn't been too bad, so we've had a little time to unwind in front of the tv. We've found that we love the dvr! We record our favorite shows and watch them the next night. Why watch them the night they're on when you can watch the following night and skip commercials! That and it makes it easier to make our 8:30 bedtime. Wednesday night we were watching "America's Got Talent" from the night before, when Jessica asked how much longer was left. I realized that meant she was tired. It was just 7:30, but we turned off the tv and got ready for bed.

Thursday morning she said she was tired, but headed on out to school. (So far, she's been waking up with her alarm ok.) I noticed on Facebook a little later that morning that she'd changed her status to "Jessica is not feeling well :(." So, I kept my phone closeby - but she made it through the day. She said that morning at school, she felt really tired, her throat was hurting, and everyone was telling her that she looked pale. She laid her head down on her desk, and her teacher gave her some papers to pass out - telling her that getting up and passing out the papers would help her wake up. Ugh! I did email the teachers explaining CFS, but I'm not sure that everyone still gets it. Jessica dozed off in class the other day, so I thought it was best that they have a little background.

In Jessica's favorite class, Creative Writing, they are writing they're memoirs. Jessica chose to write on her journey with CFS and how her faith has helped her through it. As she was working on her second draft of it last night, she read it to me. I was in tears by the time she was through. I'm amazed at how she has such a good handle on things, her strength, her faith, and her willingness to share her whole story including the ups and downs. They've been reading their memoirs in front of the class. In this memoir, she talks about being healed though "this nagging problem [CFS] will never go away, and I'm ok with that, because I know that the Lord has something better in store for me." I am so very proud of her! And guess what she titled her essay - A Time To Heal.

Overall, it's been a pretty good first week.

Time for School!

School has started. It started last Wednesday - August 19th. Why does the summer have to go by so fast?!

Jessica is scheduled for a full day of classes at school this year. We've also put her back in her pre-ap classes. This first semester consists of Oral Communication (speech), Pre-AP Biology, Pre-Cal/Trig, and Creative Writing. Since she missed some classes and credits last year and didn't get any science in, she will be taking two science classes this year, and is in Biology with all sophomores, with her being the only Junior in the class. There was whispering going on in the class, and she was being called the "new girl," so she explained that she wasn't the "new girl," but was a Junior and had missed last year because she was sick. (She gave them the abbreviated version.) Besides taking Biology with all sophomores to their amazement, Jessica seems to like her classes. She loves Creative Writing.

Jessica turned 16 over the summer, and we have slowly been letting her drive alone. She's got my hand-me-down car - a red 2001 Pontiac Grand Am (with over 100,000 miles on it) - but not a bad teenage car. (When I was a kid, I got my dad's Chevette and Plymouth Horizon!) Anyway, she's driving herself to school and driving she and Matthew home from school, since school is just a mile away.

So far school seems to be going pretty good. She's getting to bed by 8:30 every night, which is early for normal kids her age. She's even come to me telling me she's tired and going to bed. But, last night there was a football game, and a friend wanted her to go. The game didn't start till 7:30, so it wouldn't have been worth it with an 8:30 bedtime. We ended up telling Jessica that she couldn't go to the game; I hate that, but let's get at least one full week under our belt first before we try anything else.

But so far so good. Jessica may get a little tired in the evening, but she's holding up pretty well. She likes her classes, and is able to be more normal. It's been good hearing her talk about friends and making new ones and being more interactive this year, since she missed ALL of that last year.

We hope her improved health continues, and the school year continues to go well.

Flu and Swine Flu

Jessica's doctor gave us a prescription for Tamiflu - just in case it's needed. He told us that Jessica shouldn't get the flu shot, mentioning something about Th1's and Th2's. (Evidently not a good idea with her immune system.) He did say the flu mist was an acceptable option for her if it's available.

I'm a little concerned about the swine flu that's going around, particularly with the start of school coming up. I've heard of several church youth groups that came back from summer camp after being exposed to it. People we know that have family members with it. We had our first death in Arkansas from it the other day.

Matthew and Steve and I will get our flu shot, and we will all practice good hygiene and try to stay away from germs as best we can.

On another note, Jessica's been a little tired from our trip. She finally finished her school summer reading assignment and essay yesterday. Finally! She was having trouble focusing to get it done. She still needs to refine the essay a little bit. School starts in a week!

Dallas and The Doctor

We had a doctor's appointment scheduled for Monday in Dallas, so we added a few days and made it a mini-vacation. We even managed a day at Six Flags.

The day we left our house for the 5-1/2 hour drive to Dallas, Jessica wasn't feeling well - really tired and her throat hurt - so I wasn't sure how much she could handle. She slept in the car. And the next day, was the best day weather-wise (least chance of rain) to attempt Six Flags, so we went. She was tired, so we took breaks. There were a few times when she said she was ready to leave, but she held out - especially for Matthew. We were in line for one of the boat rides and Jessica said she needed to sit down, so we got out of line and went to an inside country music show. (Jessica likes country music.) She sat while Matthew played carnival games. Etc. There was a free concert that evening with Jessie McCartney, and Matthew wanted to go see it, so Jessica held out till then. We listened to a few songs, and then headed for the park exit. Steve pointed out a dark cloud that he thought looked like a wall cloud. We, along with everyone else, were leaving the park at the same time - trying to beat what looked like a bad storm. I panicked and tried to get everyone to run to the car, but Jessica didn't have anything left in her. So, we walked - at Jessica's pace. Luckily, we made it to the car just before the bottom fell out. It was a rough drive back to the hotel though.

Monday we went to Jessica's doctor's appointment. He dropped her Valtrex anti-viral dosage down from 2 pills a day to 1 pill a day. He told us that we could quit 2 supplements - Anti-viral and Arteminisin - saying they had done the work we needed them to do. There were also 2 more supplements that he said we could step down the dosage of and get off one at a time, and see how she does. (Both of these are for energy production.) He did increase her thyroid medicine a little bit. And he gave us a prescription for Provigil to help with her focusing problem. We haven't filled that prescription yet, because we're still researching. He took blood, and we'll find out those results at our next appointment, which isn't until November. Overall, it seemed like a good appointment.

And Jessica got to sleep on the ride back home.

The Summer of 2009

I'm catching up...

This summer has been a pretty good summer. And, looking back to last summer, and even this past spring, we can really see that Jessica is doing so much better. Last summer (2008), I remember when Jessica so badly wanted to get out of the house if just to go to Target or the store with me, but wasn't up to it. This summer, she's done more than I thought she'd be able to. And I'm glad she's been able to enjoy being a teenager, enjoy her horse again, get out and do some things, have some independences, spend time with friends, etc...

She took a Leadership Class at church that met one day a week for about six weeks. This included writing three or four essays; one overnight canoe/camping trip to the Buffalo River developing team skills; and one day trip to the University of Arkansas Athletic Department in Northwest Arkansas to meet several leaders in the athletic field. She may have slept the next day, but she survived it all, had good experiences through it, and graduated with her team winning overall.

This summer she got to do the summer job she had to give up last summer (because of her illness). She worked at the stables in exchange for lessons. She would've liked to have been able to work every day, but we settled for what we hoped she could handle - Monday and Friday mornings only - 7:30a.m. to 11:00a.m. Her job usually consisted of feeding and watering the horses, and maybe working a horse… (The feeding usually took an hour and a half since some had to be sat with so the more dominant ones didn't eat all their food.) Jessica was in her element, and she got a riding lesson out of it too.

Jessica may have been tired here or there, and had the one real crash, but the summer overall has been good, and we've seen much improvement. We hope it continues.