Thursday 7/31/08

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.

Wednesday 7/30/08

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.

Tuesday 7/29/08

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 7/28/08

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.

Sunday 7/27/08

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.

Saturday 7/26/08

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.

Friday 7/25/08

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.

Thursday 7/24/08

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.

Wednesday 7/23/08

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.

Tuesday 7/22/08

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)
  English (Pre-AP)
  Algebra II (Pre-AP)
  Science - Biology (Pre-AP)
  Spanish I & II (all year)
  Health (9 weeks)
  Digital Photography (9 weeks)
  Word Processing
• 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.

What do we do? This can be a lonely road.

Tonight it's more apparent that she's tired.

Monday 7/21/08

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!

Sunday 7/20/08

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.

Saturday 7/19/08

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!

Friday 7/18/08

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].

Thursday 7/17/08

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.

Wednesday 7/16/08

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.

Tuesday 7/15/08

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.

Sunday 7/13/08

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.

Saturday 7/12/08

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.

Friday 7/11/08

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.

Thursday 7/10/08

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...

Wednesday 7/9/08

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!

Tuesday 7/8/08

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.

Monday 7/7/08

Jessica did ok today, even after her little swim yesterday. She was a little tired today, had a little sore throat, but was ok. My parents took her to a couple of stores to look for a new comforter, and out to eat lunch.

Sunday 7/6/08

Jessica did pretty well today. We went to Steve's sister's house for June and July family birthdays and to swim in her pool. Jessica got in and played an easy game of volleyball and then played around in the water some, probably in there for an hour and a half. I hope she didn't do too much, but it was good to see her having fun!

4th of July Trip to the Ozark Mountains

We just got back from 3-1/2 days at a cabin in the Ozarks. And Jessica did pretty good!

The plan was to relax, enjoy the peacefulness, and a change of scenery! The cabin was rustic - no tv, and we didn't even miss it! Guests frequently see deer or elk grazing in the pasture below the deck, but we didn't see any. We saw 5 deer while driving around during our stay, and lots of squirrels and hummingbirds.

Wednesday 7/2/08
We left late so we didn't get there until close to 5:00. Jessica wanted to go alone with Steve to the grocery store, and then we grilled hamburgers.

Thursday 7/3/08
We went fishing in the beautiful Buffalo River. Then came back to the cabin for sandwiches. Then went back to the Buffalo for swimming. We were able to drive our car down to the bank to unload and so Jessica didn't have to walk much. Jessica floated in a tube. When I jumped on with her, she jokingly told me that the tube was for the sick, and then said she was going to be sick forever. (In other words, I didn't ever get it!) She later told me that she "knew [because of what the doctor told us] that she would have this forever, but when she's on the medicine she won't even notice that she's sick."

This evening Matthew grilled hot dogs for us, and then we played Outburst Jr. (Jessica and Steve won.) Jessica was tired, but held up ok otherwise.

Friday 7/4/08

It stormed in the night, but let up this morning, but also left the river muddier and cold! We went fishing again. Steve and Matthew had a run in with a snake. Steve broke his fishing rod casting. And Steve had to wade into the cold water after a few stuck lures. We came back for lunch. Jessica was tired, and getting a headache, so we tried to get her to stay at the cabin with me while just the boys went fishing again, but she said she "didn't like being left out." So we all went back.

This evening we made a little over an hour trip to Eureka Springs to the Great Passion Play - a cast of hundreds performing an outdoor presentation of Christ’s last days on earth, death and resurrection. The play didn't get over till 10:30 getting us back to our cabin at almost midnight, but it was well worth seeing! I checked on Jessica several times throughout the play to see if we needed to leave, but she didn't want to. She was tired, but ok.

Saturday 7/5/08

Today was our last day. We checked out, and then headed back to the Buffalo River for one last time. We fished. (No one caught anything the whole trip!) The water was very cold after the rain, but that doesn't bother Matthew! So Steve braved the cold to get in and swim with him.

We stopped by Cliff House Inn Restaurant overlooking the Arkansas Grand Canyon. Steve, knowing that I'm scared of heights, waited until we were back in the car to tell me that the restaurant was on stilts! The view was beautiful though.

Tonight we had friends come over for fireworks and orange crush ice cream. Matthew's been looking forward to this for days! Jessica said she was a little tired and had a little sore throat, but she held up pretty well.

Tuesday 7/1/08

The last few days, Jessica has felt so-so. Jessica's stayed around the house (watching tv, playing Nintendo DS) or layed around the house. Saturday we went to a church fellowship that we host, and she stayed home, not feeling up to it. Sunday my parents had invited us to see a movie (Wall-E), but she said she didn't feel like going, so we stayed home (which was ok with me because I think I'm getting run down!).

Today I was at work, but wish she'd told me to come home. I didn't realize she was feeling as bad as she was. She had a headache all day. And tired - she looks tired! I didn't think she was up to going, so I stopped by to take care of Mia without her today.

We've got the next 5 days off. Hopefully she'll be able to enjoy our relaxing 4th of July.