Dr. Chernoff and stuff

The appointment with Dr. Chernoff went well, I think. I asked her what she thinks of biomedical treatments for autism. She seemed open-minded enough about it to satisfy me, and she seemed cautious enough about it to satisfy my husband. She also gave us the names of two nutritionists who can help us put JF on a GFCF diet. I need to figure out whether either one is on my health care plan.

After we left, I started to worry. It's difficult to describe this worry. I guess it comes from my expectations, based on visits to other doctors. When visiting other doctors, we always leave with something: diagnoses, prescriptions, referrals, suggestions, information, or at the very least, reassurance that the doctor will investigate the issues at hand. After the visit with Dr. Chernoff, I started to wonder, what did we leave with this time? We have the names of two nutritionists. That's it. Maybe I'm being greedy or impatient, but I was expecting much more.

We gave her lots of paperwork to look at: JF's school evaluations and IEPs, his allergy test results from last August, and a spreadsheet that I had made. The spreadsheet includes all of his doctor visits (from my records in Microsoft Money and insurance claims), all of his vaccines, and the dates on which he tried each food the first time. For some reason, I haven't managed to include developmental milestones like when he started crawling or walking. But the doctor seemed happy with this spreadsheet anyway. And we promised to ask the neurologist to send her a report. I also gave her a printout of Parent Ratings of Behavioral Effects of Biomedical Interventions (the PDF version).

So I will give her time to read all of this stuff, and wait to see what she does with it. But it would have been nice if she had concluded the meeting with, "I will read all of this and give you a diagnosis/referral/information later." Maybe she usually does say something like this, but just forgot today. Or maybe she did say it, but I wasn't paying attention!

In other news, I went to My Organic Market (MOM) after work today. I spent $59.37 on thirteen items, and all of it was GFCF: Pancake mix, bread, spaghetti, cereal, frozen fruit bars, tea biscuits, candy, DariFree drink mix, margarine, bagels, cookie dough, waffles, and pound cake.

In my mind, there is a GFCF contest between stores, and MOM might be winning. I was able to find only five GFCF items at Trader Joe's, and only two GFCF items at Whole Foods. On the other hand, Trader Joe's is closer to home for me, and has their list of gluten-free products on their website. As far as I can tell, MOM's website does not have any product lists. And maybe I'm just getting better at finding GFCF stuff.

After we move, I will have to start all over again, figuring out where I can buy GFCF foods. But I don't see my current efforts as a waste of time. It's a learning experience.

We're almost ready to put the house on the market. AF needs to paint the upstairs bathroom and finish painting the kitchen, and fix a few things here and there. The wood floors are all refinished, the outside of the house has been painted, the yard has been cleaned up and mulched, the chimney/fireplace has been lined/repaired, and most of our clutter has been hauled to the new house, to Goodwill, or to the dump.

JF's rash disappeared after five days. The daycare refused to take him back until the pediatrician had filled out a new health inventory form. So, on Monday (or was it Tuesday?), I took the morning off from work to take JF to the doctor so he could fill out the stupid form. (AF had to stay home to meet the chimney repair people.)

Oh, and I almost forgot: JF pooped in the potty again! (This seems to be a monthly occurence, so it's still cause for celebration.)

Another mystery rash

On Thursday morning, when JF woke up, I noticed him rubbing his belly, right at the waistband of his pajamas. I didn't think anything of it, at first. After giving JF his breakfast and medications (including his Lamictal), when I helped him take off his pajamas, I noticed the rash. It was red, raised, and concentrated on his belly and hands (the back of each hand and on his wrist). There were also red dots, the width of a pencil eraser, one or two sprinkled on each body part. And it was apparently very itchy.

We had been told to watch for allergic reactions while increasing the Lamictal dosage, particularly a rash. The problem was, he had also started Zithromax for bronchitis, just this past Monday. The pharmacy's information sheets for both of these medications said that a rash is a sign of an allergic reaction. If this rash was an allergic reaction, which medication had caused it?

We called the neurologist because she had prescribed the Lamictal, and we called the pediatrician because he had prescribed the antibiotics. The neurologist said it was probably the antibiotics. The pediatrician said JF has had Zithromax before without any reaction, so that's unlikely. After asking lots of questions about the rash, the pediatrician told my husband that we should just keep an eye on it. I insisted on an appointment, because we needed to know whether to discontinue either medication, and we needed to know this before his bedtime dose. We made an appointment for 1:15 that afternoon.

Meanwhile, I was worried about being late for work, and AF was worried because this was the day a crew would paint the outside of the house, and they were scheduled to arrive at 8:00. The pediatrician said we could send JF to daycare, so we did. When I dropped him off, I told two or three teachers about the rash, explaining that we think it's an allergic reaction to something, and we're discussing it with his doctors. Then I went into the office at work just to grab my laptop and head back home. I wanted to be prepared for anything.

As it turned out, AF took JF to the 1:15 appointment, so I was able to work a full day from home. However, I was very worried about this rash. If we don't figure out what had caused it soon, wouldn't it get worse? If it gets worse, will he go into anaphylactic shock and stop breathing?

I took out my frustration on a couple of co-workers, by e-mail, when they demonstrated quite thoroughly how defective their listening skills are. I'll probably regret it later, but it seemed like a good idea at the time.

The pediatrician looked at JF's rash. He showed AF how the rash "pulses" when you stretch it. (Apparently, this helps to diagnose it.) He suggested Cortisone 10 for the itching. He told us to stop the Zithromax, but still keep an eye on him. The bronchitis is apparently gone.

AF put JF to bed that night, so I didn't get a good look at the rash. The next morning, I was frightened by how much it had spread. There were many new red dots, and the older ones had expanded, joining to form large areas of rash. Also, the bigger dots and areas had a red outline with various colors in the middle: some were normal skin color, some white, and some were blueish. I asked AF to take a look, and he said it looked that way the previous night. It had apparently gotten worse gradually over the course of the day, but then stabilized overnight. That was reassuring.

AF took JF to daycare on Friday morning, and then brought him back. The daycare now required a note from the doctor. We called the pediatrician. While we waited for a call back, we read to JF "Put Me in the Zoo" by Robert Lopshire. (I figured it was appropriate: a red-spotted creature gets thrown out of the zoo, and then proceeds to show two children what he can do with his spots.) The doctor faxed a note to the daycare. I was still worried about the allergic reaction getting worse, but I was relieved that the daycare accepted him.

On Friday afternoon, I called the pediatrician, because I thought we should be scheduling more allergy tests, and it seemed odd that the pediatrician hadn't recommended it. The doctor explained that it was a contact rash, like poison ivy (but not poison ivy). There were no allergy tests that would help, and there was no danger of anaphylactic shock. Apparently, AF had tried to relay this information to me, but I didn't get it until the doctor explained it.

Then the daycare rejected JF again. Twice in the same day! Apparently, a different director had arrived, one who didn't like the doctor's note. She called me at work, and I told her what I had just learned, that it was in the same category as poison ivy. She pounced on that, and said that she has seen her share of poison ivy, and JF's rash isn't like any rash she's ever seen. She was genuinely concerned. By this time it was 4:00 PM, and we didn't bother to argue about it. AF took him home.

By Saturday morning, the rash had faded noticeably. Instead of an angry red, it was merely pink. But the centers were even more colorful than before: blueish, purplish, brownish (bruise colors). The ones on his legs looked uglier than the ones on his upper body. I took pictures with my cell phone. Over the course of the day, the pink turned redder, especially in the legs, but it was still better than the previous day.

By this morning, it had all faded to pink, even the centers.

I wonder whether this is related to his previous rash, which was diagnosed as HSP. The current rash can't be HSP, because it isn't limited to his legs this time.

I've been reading Unraveling the Mystery of Autism by Karyn Serroussi. There's a section about the role that yeast plays in many cases of autism. I learned that many autistic kids have yeast overgrowth, and when treated with Nystatin, after the initial die-off, the autistic symptoms improve. Before treatment, these children have fungal metabolites in their urine.

I thought about JF and his strange rash. He's allergic to mold. If the antibiotics had caused a yeast overgrowth in his body, his urine would be full of fungal metabolites. If he managed to wet his sheets with this urine, would that explain his rash? It fits with the pattern on his skin. Didn't AF say something recently about forgetting to change JF's sheets before putting him down for a nap?

Ugh! I'm so frustrated!

My husband is still skeptical about biomedical treatments. He said he wants to do his own research. That's fine, but when?

The pediatrician doesn't want to get involved with biomedical tests or treatments. The appointment with the DAN doctor isn't until June. The appointment with the developmental pediatrician is this week, but I have no idea how supportive she will be of any biomedical stuff.

I asked my sister-in-law, a nurse, to take a look at www.GenerationRescue.org. I asked her to look for flaws. I was confident that she would be impressed, and would help me persuade other people, including my husband, of the validity of biomedical tests and treatments. She wasn't impressed. She listed what she perceived to be its flaws, but she didn't back up her statements with quotes. It seemed that she hadn't really read much of the site, but instead just listed her pre-conceived views.

I was hurt at first. I thought about not replying, but I figured that she would expect some kind of reply. So I responded to each one of her points, politely. I gave her specific quotes and links to specific pages on the site, including a link to the page about the CDC and the Simpsonwood meeting (mercury myth #17). This was Wednesday night. I haven't heard back from her yet. I hope that's a good sign.

So I wait. I wait for appointments, I wait for my husband to do his research, I wait for my sister-in-law to reply to my e-mail message. I wait for people to understand what I understand. Meanwhile, JF keeps getting hit with strange illnesses, and he keeps getting older, reducing the effectiveness of any treatment.

I also realized this weekend, while JF is on his 15-week schedule of increasing doses of Lamictal, we shouldn't try anything new. We should try only one new thing at a time. During these 15 weeks, we have to increase the dosage every two weeks. If we started a GFCF diet, or supplements, or anything else during the 15 weeks, and if JF gets better or worse, we won't know whether it was the Lamictal or the other thing that did it.

And Karyn Seroussi doesn't mention anything about mercury, but states that autism is caused by the vaccines themselves. Why focus solely on the vaccines? Why does Generation Rescue focus solely on mercury? Can't they both be right?

IEP meeting

I have the impression that many IEP meetings are frustrating and painful experiences. Well, maybe I'm doing something wrong, because the IEP meeting that I attended today was a relatively pleasant break for me, compared to all of my pain and frustrations at work!

There were only four attendees: myself, JF's teacher, JF's speech teacher, and the chair of the meeting from Program Support. As I may have mentioned before, I really like JF's teacher. I've met both of the other two women before, and haven't had any problems with them.

During this meeting, I raised a few concerns:

• Number of hours per week
• ESY
• Pre-kindergarten

And then there were miscellaneous discussions, too.

Number of hours per week

I was worried about the number of hours of instruction for JF. I asked whether it could be increased from 15 hours per week to 20. They asked why. I told them about the recommendation in the DAN! website for 20-40 hours of ABA per week. The first response was that JF doesn't need intense ABA therapy. He does well with some ABA, but if that was his only therapy, he would actually make less progress than he is making now. They said ABA isn't ideal for higher-functioning kids like JF. I think they also said that ABA would reduce his ability to generalize what he is learning. They suggested that I look into Applied Verbal Behavior (AVB). They also mentioned something about a Pre-K Autism program.

I said, "I'm not worried so much about what type of therapy as I am about the amount of time." They asked why. I said, "Because more is better." They said that they don't have a program for kids like JF with 20 hours per week. The program that he's in, PEP-INC, has the longest amount of time per week. I asked whether it should be about what resources the county has, or what JF needs. They agreed that it should be about what JF needs.

Then JF's teacher made the point that having JF in daycare with his (neurotypical) peers is crucial. One of his strengths is his tendency to imitate what he sees and hears, and a large part of his week should be spent with his peers, so he can observe how they talk, behave, and interact. This was persuasive for me, because the more time he spends in a preschool program, the less time he would have with neurotypical peers.

His teacher continued, asking whether we know about the autism waiver. We don't. She explained that it is money (from the state) to explore outside therapies. However, there is a long waiting list, and higher-functioning kids are less likely to get it.

ESY

I wanted JF to receive ESY services. Fortunately, the team determined that he will. The reasons included:

• Presence of emerging skills or breakthrough opportunities: He "is beginning to have more spontaneous speech and decreased echolalia. The team is concerned that he might lose those skills over the summer break."
• Special circumstances that require ESY: He "has missed a lot of school due to illness." (For each of the past two illnesses, JF lost a week from school. Someone at the meeting mentioned that he has missed about a month, total.)

The ESY dates are 7/2/07-8/3/07. Right away, I asked whether there is any wiggle room in these dates, because the last week of these dates conflict with our family vacation in Vermont. The answer was, "There is no wiggle room, but you should go ahead with your vacation plans anyway. It will be good for him to be with his family on vacation, even if it means that he'll miss a week of ESY."

I asked whether this decision to give JF ESY services would transfer to Howard County when we move. (I mentioned that we are still planning to move, but we don't know when.) They said yes, with the new state IEP form, any other county in Maryland should honor this decision. I speculated that Howard County might not have the same dates for ESY. JF's teacher said that it's usually in July, because that gives the school time to hire and train new teachers before the new school year starts.

Pre-kindergarten

I asked whether JF should be enrolled in pre-K in the fall. (He will turn four in May.) JF's teacher said that the Montgomery County pre-K program is a special program under Head-Start, with enrollment based on income. The goal of the program is to help the less-advantaged kids. It's five days per week, but only 2.5 hours per day. There are about 20 kids in each class, with one teacher and one aide. The PEP-INC class is a much smaller ratio, and JF still needs that smaller ratio.

On the other hand, they said he might attend a normal class by kindergarten!

I don't remember how they worded this, but it made my heart skip a beat. I pictured JF as a completely "normal" five-year-old, playing and conversing with his classmates. It wasn't until I typed the above statement just now that I realized, they weren't making any promises about JF outgrowing his developmental delay. They were merely talking about including him in a regular kindergarten class. Oh, well. Even that is progress.

Miscellaneous discussions

JF seems to be learning a lot of Spanish. He apparently likes to say, "No mas, " to one of his PEP classmates.

JF has days where he makes progress on a skill, but then one day he'll seem to forget the skill. His teacher called these his "ups and downs." I asked whether this was normal. She said, "No, but we have to address it."

JF's speech teacher mentioned that he sometimes seems afraid to be wrong. He knows the answer, but hesitates about answering. She suggested, when we're working with him at home, if he gets something wrong, we should respond gently, as in "Yes, it looks like a chicken, but it's a turkey." I told her that we generally do respond that way to JF's mistakes at home, but I admitted that I might be responding too strongly when he makes a mistake getting dressed. I speculated that this might be where he's getting his fear of making mistakes. The speech teacher suggested a book by Boynton called Oops. And we should let him see us making mistakes. She also suggested, when we're waiting for him to answer a question, sometimes it helps to look at him expectantly.

I mentioned that JF bit my chin last night and then laughed at me when I screamed in pain. Both teachers offered a series of suggestions that I've probably mentioned here before. Once we were past that, I reminded JF's teacher how she had responded to JF once during a home visit, when he spat on the table. I told her that AF and I still haven't figured out how to duplicate that tone of voice. She has a knack for making him nearly cry when he's done something bad. When we try it, he just laughs at us. She said we should use a deep, stern voice, authoritative without being angry. The speech teacher said sometimes it helps to get down on the child's level first. She said this suggestion came from "the Nanny book" (related to the Super Nanny show on TV).

So that was JF's IEP meeting. I really don't know whether I did a good job of getting my son what he needs. Maybe I'll be wiser and more confident about these things the next time.

Meanwhile, AF took JF to Dr. Buck, the surgeon who repaired JF's hernia, for his follow-up appointment at 4:00. AF called me a short time ago complaining about the long drive to get there, and the long wait to see the doctor. And after all that, the doctor looked at JF briefly and said he's fine. Of course, he was relieved that JF is fine, but annoyed that it wasn't a big deal to the doctor.

Then, AF took JF to the pediatrician's office. JF was out sick all last week, with a fever, runny/stuffy nose, and a cough. The fever went down by Friday, but the congestion and cough continued throughout the weekend. On Saturday night, his cough had started to sound like asthma, so we gave him albuterol. It seemed to help him enough so that he could sleep. We gave him albuterol again last night, too. So today, AF called the pediatrician and asked for an appointment sometime today after the 4:00 appointment. The best they could do was 7:15 PM.

AF just called me with the results of that visit: bronchitis and antibiotics. Go figure.

Much better now

For those of you who read my previous post, I did feel a little better the next morning. Not a lot, but just enough to get me through the day.

Another possible reason for my depression was that my hearing and balance had been distorted for several days. I finally went to the doctor on Tuesday morning. Turns out both of my ears had fluid in them. I took one Claritin D and within 12 hours, my hearing was back to normal. All of the fluid that had been clogging my ears drained out. Then I felt feverish for a day or two. Now I feel much better, physically and emotionally.

My theory is my ears got clogged because I spent one or two nights sleeping without a pillow. My allergies (which I can normally ignore) provided the fluid and gravity did the rest.

JF has been home sick all this week, with a runny/stuffy nose, a cough, and a fever. His IEP is on Monday at 2:00, and his surgery follow-up is the same day at 4:00, so I hope he's better by then.

So far though, it has been one of his standard illnesses, rather than the circus act we had the last time with HSP. I have a theory about that, too: JF had been starting to get sick (runny/stuffy nose) when we spent a weekend at the Jessup house. I got tired of the dirty floors, so I found a broom and started sweeping it up. JF wanted to help, so I allowed him to push the broom a few times. My brother-in-law and his wife had many pets in this house, including cats. JF is allergic to cats. My theory is that the sweeping kicked up a lot of cat allergens (and who knows what else) into the air. JF's body responded to it by pulling out all the stops. We really must have that place professionally cleaned of allergens before we move in!

I think I should take back one thing from my previous post. I complained that I had not had one of my typical weekend breaks (reading fiction) since before Thanksgiving of last year. While this is true, it's not the whole truth. After Thanksgiving, Christmas, and New Years Day was over, I probably had a few opportunities to read fiction. But by then, I was hooked on blogging. I squandered my free time writing blog posts!

I don't mean to disparage blogging. I just mean that my complaint wasn't as valid as I had thought. I will still try to make time for reading, soon. But it doesn't feel as urgent any more.

Another possible reason for my depression was frustration about going to church. I was raised Roman Catholic, and we went to church every Sunday. We had to be in dire straits to skip it. This annoyed me when I was little, but as I got older, I found it to be time well spent. It provides a welcome break from the rest of our lives, and makes us think about how we are living our lives.

Shortly before AF and I got married, I switched to Unitarian Universalism, because of my skepticism about many things in the Roman Catholic creed. We married in a UU church, and we started attending that church nearly every Sunday. I even joined the choir.

Then JF was born. I quit singing in the choir. We dropped the habit of going to church. I have taken JF to church maybe twice in the past (almost) four years. At first, it was because I felt too overwhelmed to squeeze in a trip to church between breast feedings. Then JF became old enough to attend the UU Religious Education classes. When children reach this age, they attend the first part of the service with their parents, then they go to the RE classes so that the parents can enjoy the rest of the service in peace. Sounds great, until you ask about enrolling your child in RE. You have to volunteer for the church, spend a certain amount of time on RE work or other church work. You can't just pay a fee.

Maybe this is okay for most of the parents in the congregation, but it doesn't work for me. I have a hard enough time juggling work and housework and bills and so on, I don't need to add more responsibilities to that. I know when to say no!

So I gave up the idea of going to church. Until recently. When JF and I spent a weekend at the Jessup house, I tried to visit various places in the community, like the library, playgrounds (of course!), and the UU church in Columbia. We were late for the service, but I peeked in. I saw no children. My heart sank. I didn't realize until then, that I had been hoping that this UU church would be different. I talked to people in the hallway, and was introduced to the RE manager. She said that they just recently changed their policy, so that you can't just pay a fee to enroll your child in RE, because there's just so much work to be done. They need the volunteers. (Is it really volunteering, then?)

She did, however, mention that volunteers are needed to buy supplies for the RE classes. Each volunteer chooses a class and goes shopping once a month for the supplies needed in that class. I'm hoping that this volunteer position is still open after we move.

As far as addressing JF's autism, I've been making some progress:

• I've learned that JF has had two doses of Thimerosol from flu shots: One flu shot given to me when I was 15 weeks pregnant and one flu shot given to him at 17 months.
• I asked my sister-in-law, a nurse, to take a look at generationrescue.org. I haven't heard from her since then. I hope she is as impressed as I am. My husband is still skeptical about all of it.
• I started conversing via e-mail with a Rescue Angel from the above web site. She has given me so much valuable advice, it will take me time to digest it all.
• I shopped at Whole Foods and Trader Joe's for GFCF foods. Each has a selection of gluten-free products, and I can figure out which of those are also casein-free. Whole Foods had only two that I could find (molasses ginger cookies and morning glory muffins). Trader Joe's had much much more.
• I ordered four books from Amazon.com: Special Diets for Special Kids, Unraveling the Mystery of Autism, The Out-of-Sync Child, and The Out-of-Sync Child Has Fun. So far, only Special Diets has arrived, so I've started reading it.
• JF has voluntarily switched from cow's milk to almond milk. We give him a choice, and he always chooses almond milk. He still eats cheese and other dairy products, but this bodes well for when we do change his diet. He has also tried bites of rice cake and other GFCF foods that I've been eating.
• I think I've seen some improvements in JF's communication, but I'm not sure. Maybe I need to do another snapshot soon.

I'm sure I'm forgetting something, but I need to get off my butt and get ready for work. It's going to be a long day.

Fighting depression

I'm depressed today. This has been building for the past few days. I'm not sure whether there is any particular reason. Too much to do and not enough time? That doesn't explain it because sometimes I see it as a challenge. Hormones? I hope not, because it's the middle of the month. I don't want to be fighting off this malaise for two weeks.

It's almost a physical feeling. My brain keeps looking for reasons to be sad. I don't feel like doing anything. I made myself go to work today. I made myself eat dinner when I got home. I tried to help AF get JF ready for bed tonight, but I didn't do as much as I usually do. And I'm making myself write this post.

I feel like a battery that has run down. I need to be recharged, but I don't know how. What do people do to recharge themselves? Yes, I know people go on vacation, or engage in a hobby, or whatever, but how does that work? Why do these activities make people feel better about returning to their real lives afterwards?

My current theory is that these activities are simply distractions. We periodically distract ourselves from our problems, whether it's two weeks per year, two days per week, two hours per day, or two minutes per hour. When we recognize that our problems are starting to overwhelm us, we look for a way to take a break and distract ourselves. Then, hopefully, when the break is over, we come back to the same problem with a fresh mind (and body?), and are better able to cope with it. Theoretically.

This is also one of my favorite parenting techniques. When JF is upset about something, after I have sympathized with him for a little bit, I distract him. It helps a lot!

The next question, then, is how much distracting do we need? How can we make our self-distractions more effective? And I mean "effective" in the sense that the distractions have reduced our anxieties and made them easier to cope with. Is another problem an effective distraction, if it is a challenge that you feel you have a chance of mastering? Is a two-week vacation proportionately more effective than two hours of writing a blog post?

Every Friday, AF and I have the same conversation: "Hey, it's Friday!" "Yeah, it would be nice if that still meant something." AF has been working on the house for over a month now, and we have not taken any of our typical weekend-type breaks during that time. For AF, a typical weekend break is spending a day with his buddies at the gym. For me, it is spending a day reading a science-fiction or fantasy novel.

As a matter of fact, I think the last time I did that was before Thanksgiving last year.

No wonder I feel like crap.

Also, perhaps I had been concentrating on JF's surgery, as if nothing after that point mattered. Then I came back to work the day after his surgery, and it was the same old grindstone. I still had work to do!

Now, if I were my own psychologist, I would prescribe for myself a holiday. Just curl up with a good book and some hot tea, and ignore reality for a whole day.

I would love to, but...I can't. AF will be taking JF to the dentist tomorrow, and otherwise entertaining him so that I can catch up on our finances in Microsoft Money. Then on Sunday, it will be my turn to entertain JF while AF continues with his work on the house. Next weekend, we'll have the floors in the other half of the house refinished, so I'll have the boy both days.

If I took tomorrow off for leisure-reading, that would mean it will be at least a month between Microsoft Money updates. With all of the spending that we've been doing on the house, that scares me. And fear is stronger than this depression. So I will put off that book, indefinitely.

Since I don't have a specific date for leisure-book reading, I'm looking forward to our summer vacation with AF's family. AF has two brothers and two sisters, and each has a spouse and two kids. AF's nieces and nephews range in age from four to college-aged. This collection of families tries to do a vacation trip together every summer. Sometimes it's Knoebel's, a campground and amusement park in Pennsylvania. Sometimes it's Lake Rescue in Vermont. The last time we went to Vermont was before JF was born. (Maybe it was 2002?)

This summer, it's Vermont. It will be two weeks [correction, one week], at the end of July, beginning of August. The last time, all five families crammed into one big house, and tensions were high toward the end of it. This time, we have three new additions to the clan: JF and two of his cousins. So this summer, each family is renting it's own house.

By the time we go to Vermont, many of the things that I'm worried about now will have changed:

• The improvements to the house should be long done, and (hopefully) the house should be sold. We should have already moved to the Jessup house and settled in to a new routine.
• We should have seen at least two more doctors about JF's autism. (The developmental pediatrician that JF's PEP teacher had recommended, Dr. Chernoff, will see JF on 4/27. The DAN doctor will see JF on 6/8.)
• JF will also have had an MRI on his brain by then. (This is scheduled for 5/8. The neurologist finally answered my questions about using the MRI to look for ACM: She said it's standard to look for that kind of thing.)
• I might even have a different job by then.

I feel somewhat better now. I will try to think happy thoughts and go to bed. Maybe by tomorrow morning, the task of updating our finances (and surviving the next few weeks!) will feel more like a challenge than a burden.

Surgery went well

JF had his hernia surgery this morning, and he seemed to be back to his normal self within three hours. If he's in any pain, he's not telling us about it. He'll go back to daycare tomorrow if he continues to be (apparently) pain-free today. The hardest part now is keeping him from running, jumping, and climbing all over the place. ("Slow down! You just had surgery!")

By the way, it apparently was an inguinal hernia, rather than a hydrocele. Go figure.

I was also surprised to see that the bandage was on his lower right abdomen instead of on or closer to his genitals, where we saw the initial lopsided bulge in the first place. Not that I'm complaining. If they can repair the hernia from up there, more power to them. I'm sure it's less traumatizing to a little boy this way.

Potty training update: After waking up dry six mornings in a row, JF started waking up wet again. So we've gone back to using night-night diapers. My favorite theory is that he was waking up dry because he was off of dairy for a week. The dry mornings started exactly a week after he started the diet change, and stopped almost a week after he went back to dairy. My husband's theory is that he was drinking fewer fluids during that time.

I've been on the GFCF diet for about a week now, ever since the shopping guide arrived in the mail. I haven't ventured into any specialty stores yet. I've been surviving on the GFCF stuff that I can find at Safeway: Almond milk, potatoes, popcorn, corn chips, salsa, rice cakes, puffed rice cereal, nuts, seeds, meats, fruits, and veggies. It's frustrating how many products contain (or might contain) casein or gluten. Even salsa may be a problem, because it's made with vinegar. Apparently, if it's distilled vinegar, it should be okay, but the ingredient list doesn't always say distilled. I wish I had time to make my own salsa. (Free time? What's that?)

But I really miss things like cheesecake, muffins, brownies, ice cream, cookies, and chocolate. Just writing this list is making me drool. I need to start finding the GFCF versions of these things. I also need to start looking for GFCF versions of non-food items, like soap, sunscreen, and toothpaste.

The GFCF shopping guide is great, from an information perspective. But from a technical writing perspective, it could use some help. If I had any spare time, I'd volunteer to improve it. Here are just a few of my ideas:

• Improve the table of contents, headers, footers, cross-references, and index. If the document is in Microsoft Word or any other word-processing software, these things could all be updated with one command.
• Expand the table of contents to include all headings in the book.
• Expand the index to include everything that is mentioned in the book. For example, there is a section on salad dressing, but no entry in the index for it.
• Expand the index to use multiple-level index entries, especially for items that appear on more than two or three pages. It's tedious to look up all of the entries for applesauce. Adding subentries reduces the amount of time it takes for the readers to find the information they need (and reduces frustration).
• Use a link in the header to pick up an appropriate heading, at the same level throughout the book. Currently, the header seems to reflect a top-level heading at first (such as "Acceptable"), then disappears, and then reflects a lower-level heading (such as "Salad Dressing").
• Use styles for more consistent heading formatting. For example, most of the headings are in bold and centered, but some are left-aligned and not bold. (I think headings look better left-aligned.)
• Use styles for more consistent bullet formatting. For example, some bullets are asterisks and some are actual bullets.
• Sort all lists alphabetically. (Many of the lists in this guide seem to have been alphabetical at one time, but then new things have been added in the middle.)
• Change "NO" to "Avoid" in bulleted lists of items to avoid.
• Divide the book into actual chapters. For example, Chapter 1 could be about the foods that you could find in a generic grocery store. Chapter 2 could be about foods that you could find in specialty stores. Chapter 3 could be about non-food items.
• Add a chapter with suggested menus.
• Use Adobe Acrobat to generate a PDF of this document. Then, on the website, offer a choice: Either order a paper copy to be delivered in the mail, or order the PDF file for immediate delivery by e-mail. With a PDF file, readers can search for words throughout the book.
• Create a table (or database), where each food or ingredient is a row and information about them is in columns. The first three columns could indicate whether the item contains casein, gluten, or soy (always, sometimes, or rarely). Another column could be the type (food or non-food). Other columns could provide additional information. People who log on to the website would need to pay for access to the database, but then they could sort it based on the allergen or allergens that they want to avoid. If you care about only casein, you could sort the casein column. If you care about gluten and soy but not casein, you could sort only those two columns. After sorting, you would have a customized list of what to use and what to avoid. If this table (or database) were regularly updated on the website, then you would need to pay for a subscription, rather than a one-time access fee.

Okay, that was more than just a few suggestions. I got carried away. It just goes to show that I love the type of work that I do.

Which reminds me: I got a raise! It was a 6% increase, more or less. However, money won't keep me at this job. My job satisfaction has been steadily sinking for the past few years, and no amount of money is going to keep me there. After we have sold the Gaithersburg house and moved to Jessup, and after everything has settled down, I'm still planning to look for a new job. I hope I can find something that agrees with my philosophies, but still allows me to support my family.

On Saturday, we refinished the floors in half of the house. Two weekends from now, we'll refinish the floors in the other half. In the meantime, AF plans to paint the upstairs. We still need to consider chimney repairs and painting the outside of the house. It's slow progress, but it's progress.