11 months

Baby Nae will be a year old in a couple of weeks. As always, it seems like the time just flies by. Two years ago I never would have imagined my life as it is today. We thought we were done having babies; that we had left the baby and toddler stage, not to return until our kids were grown and we either became foster parents and/or became grandparents.

It's much different having a baby this time around. Last time I had a baby my oldest was 4. After that first hair-raising attempt, I never even took a shower without locking all three kids in the bathroom with me if I was home by myself with them. Home alone with three little ones while DH was at work, I couldn't nap if any of them were awake. I could never let my guard down for a moment.

I worried a lot as a young mom . . . worried about all the "shoulds" and "must nots"--worried that I would spoil my baby by holding her too much and picking her up when she cried; worried that I would somehow accidentally permanently damage my children by making some minor unknowing mistake in the way we did bedtime or meals or whatever; worried that my kids would never learn to sleep at night or learn socially appropriate behavior; worried that my 5-year-old stealing a toy would, if I didn't respond exactly right, grow up to be a shoplifter. I knew that gentle discipline was the right choice for our family, but I worried about whether it would really "work" to raise kids without spanking or other punitive punishments. I also worried way too much about what other people thought.

Now, my older three kids are 13, 12, and 9. And, while they're not perfect, of course; they are utterly awesome, amazing, wonderful young people. They're not spoiled brats. They're generally polite and respectful, happy, and relatively responsible. They have age-appropriate struggles and behaviors, but they also seem to have skipped a lot of the problematic issues that many kids their age seem to struggle with. We're constantly working on relationship and communication skills, but overall I think we have a great family with generally good relationships. We like each other, and we generally interact gently and respectfully with each other. We are usually able to talk through and solve problems while helping everyone to feel heard, and that's important. Oh, and they aren't picky eaters, can even cook a meal, and sleep through the night. ;)

Our kids are living proof that you don't have to do everything perfectly right as a parent to end up with really great kids that are a joy to be around. :)

With Baby Nae, in many ways I feel like I was given a "do-over" with parenting a baby. I'm so much more relaxed this time around. I no longer worry about spoiling my baby; I can just enjoy her.

There are several other differences this time around. All four kids are healthy and doing well, and our current school, extracurricular activities and lifestyle are generally a good fit for us. I have so much more help and support, between DH and the older kids who are usually glad to volunteer their help with the baby so I can shower, take a nap or just catch my breath for a few minutes. DH and I are in a better place in our marriage, and have better communication and relationship skills than we did 10 years ago. Both of us are physically and emotionally healthier than we have been in the past. That makes a big difference. Even seemingly small things like getting my milk supply regulated and discovering more comfortable and efficient babywearing methods make a big difference.

The clinical study I participated in early in 2009 was life-changing for me, and I'm still seeing a significant improvement in my health issues and neurological symptoms since removing excitotoxins from my diet. I still struggle, but it's much more manageable when I'm careful what I eat as well as doing my best to get enough rest and keep a reasonable pace to avoid adrenaline surges. Getting the EDS diagnosis has helped me to take caring for my body more seriously, knowing that any kind of physical overexertion can have permanent negative effects, since my connective tissues won't heal properly after being overextended.

I'm sure many of the above factors have contributed to the fact that I did not have postpartum depression this time around, as I did after my first two children were born. Having a healthy baby with no postpartum depression to cope with makes the whole experience of having a baby ever so much more enjoyable.

I still struggle a lot with health issues. What this means, basically, is that I have little to no time or energy for anything beyond the necessities of daily life. It takes all my reserves just to get through the day with things like meals, diaper changes, ferrying kids to and from activities, and resting between things. I do have a couple of regular social activities that I attend on a regular basis . . . a faith-based couple's home group, and a babywearing support group. Each meets every other week or twice a month; and that's about all I can handle. With that, I'm usually able to add in one or two other outings or social interactions in a week. Some weeks I can't even handle one extra activity, and other weeks I might sometimes be able to handle three or possibly (rarely) even more.

At this point in my life, though, I'm getting a little better at accepting and working within my limitations.

And all of that together means that in general I'm really, genuinely enjoying life. I'm loving this season and enjoying it for all I'm worth.

International Babywearing Week 2014, Day 1: Hands-Free Comfort

To celebrate International Babywearing Week, and to get back into the habit of posting on my blog, I plan to make a series of posts about various aspects of babywearing. I started off doing this on Facebook, but I thought why not post on the blog too? So this is Sunday's post, with some additional fleshing-out. :)

Having EDS (and the other health issues that go along with it) makes holding and carrying Baby Nae for any length of time difficult and often painful for me. I'm so thankful for the wraps and other babywearing devices that allow me to hold her as needed without undue strain and damage to my back, shoulders and other joints. It's taken some trial and error to figure out which carriers and methods of wrapping work well for me and distribute the weight without causing pressure points or extra pain, but they make life so much more manageable.

Tonight babywearing worked to get a sick, fussy, restless baby finally soothed to sleep by being wrapped up. She's cutting multiple teeth and has a cold, poor thing. And was wide awake for several hours after a brief nap in the car on the way home this evening. Often being wrapped will soothe Nae and get her to sleep when nothing else will. I think being comfortably and gently restrained with even body pressure from the wrap is calming for babies and helps them relax and fall asleep.

In the above photo I'm wearing the wrap in a carry called the Kangaroo carry, which is my favorite front carry because it's easy for me to get snug and secure, it is a fairly simple carry to tie (once you get the shoulder flip down), you don't have to put the baby down to tie it, it's not too hot with only one layer of fabric over baby, and it's relatively easy to get a sleeping baby in and out of without waking her. I can't find a video that shows how to do it in the way I personally find easiest, so I might have to make one. :)

This wrap is a size Medium (4.6 meter, equivalent to size 6) Lenny Lamb jacquard woven wrap in the colorway (name for the color and pattern) called Eclipse Black & Yellow. This is a substantial, 100% cotton wrap that is on the heavier side at about 280 g/m2 . . . it's workable new, but would definitely benefit from some breaking in. I'm not finding it too hard to wrap and tie with after a wash, line dry and steam iron, but I think it will soften and improve more from where it is now, as I haven't used it much yet.

It feels very substantial and supportive, and is a fairly dense and tapestry-like weave. If you prefer a more dense and solid feel without too much "give" or bounce in a wrap and like solid support, this may be the wrap for you. I really love the look of it, and it looks lovely in a carry that shows the pattern in reverse colors on the back side. (This was my very first attempt at a Jordan's back carry with a ring finish, so please excuse the sloppy wrap job.) Eclipse seems about midrange to me as far as how long it seems to be taking to break in compared to the other brands such as Didymos and Natibaby wraps I've bought new. I can definitely tell it's getting softer with each use.

The Eclipse pattern seems to be mostly sold out, but as of this writing they do still have it at a discount in the outlet in both black and yellow, and also in a turquoise and white version.

Lenny Lamb is a newer brand, and they have gorgeous wraps that for the most part fall into the budget category--you can get a LL wrap in their basic broken twill weave with shipping from Poland included for well under $100, and at approximately 220 g/m2 their basic twill weave wraps are a nice weight, with a bit more beefiness and cush than similarly-priced broken twill wraps I've tried from other companies.  

Their patterns are absolutely gorgeous and I've been impressed with the quality and feel of even the "grade B" discounted items I've purchased from their outlet (which have some sort of cosmetic flaw such as a weaver's knot or small pull that doesn't affect the safety or use of the wrap at all). 

They regularly have a coupon code for up to a 15% discount, linked from the Discount Area of their website (look for the "special coupon" link at the top of the page). And, once you make a purchase you automatically get an affiliate link (for instance, my affiliate link to their homepage would be http://en.lennylamb.com?rid=19435 ) that gives you a credit toward a future purchase for a percentage of purchases made through your link. As of this writing, they even give you a percentage of your current purchase as an automatic credit you can use on your next purchase.

Do note that the prices are in Polish Zloty (PLN) rather than dollars. You can find out what the equivalent to US currency is at today's conversion rates by typing "convert PLN to USD" into Google. A little conversion widget will pop up, accompanied by a graph showing the conversion rate over the past several years. Just put the amount you want to convert in and it will tell you that, for instance, today 200 Polish Zloty equals approximately $60.47 in U.S. Dollars.

I found my Lenny Lamb Autumn 100% cotton broken twill wrap soft and easy to break in (it was pretty soft and easy to wrap with after the initial wash/dry/iron), with decent cush for the weight. I felt it had a good balance of density and texture--grippy enough to hold a knot well without being difficult to pull passes across, and was easy to wrap without being as diggy as thinner wraps can be. It was still a bit lighter-weight than I prefer (I like really thick marshmallowy wraps), but I would recommend it as a basic budget wrap and an excellent beginner wrap.


I've tried several Little Frog wraps for comparison, and in general I personally prefer Lenny Lamb's broken twill over Little Frog's at a similar price point.

Lenny Lamb's basic twill is thicker and beefier than Little Frog's thinnest line, and feels a bit softer and more comfortable to me than LF's heavier 100% cotton broken twill wraps while having fairly comparable substance. Little Frog's lowest price tier wraps are geared more toward younger babies, and are excellent for that--soft, beautiful, easy to break in and easy to tie. But at 190-210 g/m2 the thinner LFs are not as toddler-worthy as a slightly heavier wrap would be, and tend to be more diggy with an older baby. (For more of my take on Little Frog wraps, see here: http://purplekangaroopuzzle.blogspot.com/2014/10/ibw-2014-day-2-size-4-woven-wrap.html ) 

The photo below shows Lenny Lamb's basic broken twill on the left,  and Little Frog's heavier weight broken twill on the right. There's another close-up of the weaves from a different angle in my Little Frog post.

There's generally a bit of a tradeoff in finding the balance between factors like cush and moldability, support and softness, firmess and bounce, grippiness and ease of wrapping. Different people will find their own sweet spot in different wraps, with much variation even within a brand in how a given wrap combines the various characteristics that determine how it feels, looks and wraps. One person's favorite wrap may be one someone else doesn't like at all, so going to a babywearing meetup to try them out for yourself is always helpful. :)

One thing I do like better about Little Frog is that their wraps have middle markers on both top and bottom rails, whereas at least some of Lenny Lamb's designs have a middle marker on only one rail. However, Lenny Lamb does have excellent customer service and said they could send me an extra middle marker to sew on along with my next order. 

Another thing to take note of is that, as of this writing, many of the Lenny Lamb striped wraps are the same color on both rails, as are some of the Little Frog colorways. While the stripes still help learning wrappers in knowing which part to pull on to tighten out slack, many beginners will find it helpful to have either different colored rails, or a pattern which is a different color on the back of the wrap than the front. 

So that's something to watch for when choosing a wrap from any company.  Both Little Frog and Lenny Lamb have some colorways that have different color rails, directional prints, and/or different colors on the front and back of the wrap, and I find this immensely helpful in knowing whether I have the rails twisted or not. :) 

Both brands have tapered tails, which I also find helpful.

I think Lenny Lamb Autumn feels similar to the approximately 240 g/m2 all-cotton Little Frog Flourite, but slightly softer and less dense. Although it's supposedly lighter weight than Flourite, Lenny Lamb's Autumn just looks and feels somehow a little fluffier to me. I have a size 7 Autumn and find it decently comfortable for 30 minutes or more with my 10-month-old in a double hammock, though my thicker cotton wraps (Inda Jani Binni Rayado and Lenny Lamb Galleons, both in the 290-300 g/m2 range) and my size 7 hemp-blend Natibaby  pink Reflection wrap (which I  usually wear in a double hammock) are my favorites for the most long-term comfort with my picky shoulders.

Their all-cotton wraps are generally going to be best for bigger babies and toddlers, but Lenny Lamb also makes bamboo blend wraps which I hear are amazingly soft and buttery and cuddly for a newborn. I have one of those on my "want" list if we ever have another baby. :) I hear very good things also about their ergonomic carriers, which seem to be very popular.

Lenny Lamb's limited-edition jacquard wraps are heavier and more detailed in the weave, but still fall into a very moderately priced range. They range from fairly thin and dense, such as the Twisted Leaves patterns, to at least as thick as 290-300 g/m2, such as Galleons. 

In a jacquard weave, the patterns are not printed on the fabric, but rather created by weaving threads of different colors together to make a pattern that is visible on both sides of the fabric (though the colors are reversed on the back). Lenny Lamb has taken this technique to a whole new level with the amazingly detailed artistry of their patterns. They have even started reproducing works of art such as this beautiful Rennaisance painting, Man of War Between Two Galleys by Pieter Breugel the Elder, on wraps. 

I got the opportunity to try someone else's Lenny Lamb Galleons wrap that had only been through its first wash and worn maybe a couple of times. Even though it's on the heavier side, with its slightly looser weave I found it quite comfy and easy to wrap with right off the bat. The cushy shoulder feel and ease of wrapping were quite surprising in a wrap that new in a more substantial weight range like that--the owner said she was impressed with how it wrapped without much breaking in, too. 

I ended up buying a Galleons of my own, and after using it for a while I'm blown away by the way it feels and wraps. I like my other Lenny Lamb wraps too but I like Galleons the best of nearly any 100% cotton wrap in any brand that I've had the opportunity to try . . . it is just such a nice balance of supportive and cushy, not too hard to wrap or terribly pull-prone without being super dense. It's one of the cushiest all-cotton wraps I've felt, and it is surprisingly moldable and easy to wrap and tie for its weight of 290-300g/m2. 

To me Galleons seems less dense than Eclipse, with longer stitches and thicker thread with more airiness in the weave, which makes it feel softer and gives it more flexibility and a spongier texture even before breaking in. As I use it more, it is definitely softening and getting floppier and even better--I am looking forward to seeing what it's like when it's totally broken in.
 
I admittedly have very little experience and am somewhat of a wrapping newbie, but Galleons reminds me in feel and wrapping quality a bit of the handwoven wraps I've had the opportunity to try, more than any of the other machine-woven wraps I've tried so far. It has almost as much cush and shoulder comfort as my budget handwoven Inda Jani Binni Rayado which is about the same weight in g/m2, but without so much bulk and grip, which in combination with the tapered tails makes it easier to wrap and tie.

I am able to tolerate single-layer and one-shoulder carries in Galleons for much longer than most other wraps I've tried, and I can actually wear it in usually-problematic-for-me carries such as a ruck tied knotless Tibetan and Poppins for about as long if not longer as my softest hemp-blend Natibaby wrap, and definitely longer than some of my other hemp blends that aren't yet as broken in. I usually have trouble with one-layer and one-shoulder carries for any length of time, so this is pretty significant for me.

My Galleons is turquoise and navy in a size XS (size 4, which is 3.6 meters) and it's really more of a sky blue or bright turquoise as opposed to the deeper teal color I was expecting, but it's really beautiful and the fabric has a sheen that makes it almost luminous when the light hits it. Here's a comparison photo of the Galleons Navy Blue & Ecru next to Galleons Navy Blue & Turquoise in indoor light without camera flash.

It's a directional wrap, with a definite right-side-up way to wear it, but the colors and textures still look neat even on the reverse side and if you accidentally wrap it upside-down, as I'm sure to do occasionally:
 

Lenny Lamb has also recently released another new wrap based on a piece of artwork, called Horizon's Verge. Since it's close to the same weight at 280 g/m2, is the same type of artistic piece, and the same price as the Galleons wraps, my best guess would be that it might be similar in type and wrapping qualities. I talked to someone who bought one, and she said that it was so soft and floppy even in loom state that she literally gasped when she took it out of the bag.

Here's where I found the weight and also some more closeup photos of the fabric: en.lennylamb.com/products/show/2031_horizons-verge-jacquard-weave-fabric-100-cotton-width-140-cm-weight-280-gm²?rid=19435

Having a wrap that is beautiful and collectible as well as practical isn't necessary to carry your baby, but it's sure enjoyable. :) And with a wrap like Galleons, the wrapping quality for the price is in my opinion very good.

Disclosure: I was not asked or paid to write about Lenny Lamb products on my blog; I just chose to do so because I like them. I do get a credit toward a future purchase if someone uses the links here to buy something. :)

Ten Minutes

These last few weeks have been grueling physically and emotionally. We've had so much going with illness, camps, the fair, family gatherings, birthday parties and a death in the family. The kids are tired and grumpy and I'm fighting a flare -up.

I wanted to make sure I spent some time connecting with each of my kids today, but I knew it was a rough day physically and my energy would be very limited, so I set a goal of 10 minutes of focused individual time with each kid.

The first one took me for a walk out to the other end of the property to show me her secret place, the second one opted to do a craft together, and the third didn't like any of the ideas I suggested and couldn't come up with any ideas of her own that didn't involve screen time, so reluctantly sat with me and had a bit of conversation for 10 minutes.

I'm not sure if I should hold firm to my "doing something together that allows for interaction and doesn't involve screen time" rule for next time, or if doing something like playing Minecraft together would be more positively relationship - building than forcing a conversation with a kid who doesn't really want to be there.

It took us about an hour to accomplish 10 minutes of focused time together with each of the three older kids by the time we figured out what to do and whose turn it was to watch the baby with each one.

By the time it was done I was exhausted, hobbling painfully, and needed a nap (perfect timing since the baby was ready for some quiet time too). But I'm glad we did it. I'm hoping to work it into our routine on at least a semi -regular basis.

Too much milk

As I was reading through some old blog posts, including this one mentioning Baby E's fussiness and difficulty with nursing and this one that mentions her inconsolable near-constant screaming, I was reminded of how difficult those first few months of nursing were with all three of my older kids. While they really did probably all have reflux and Ebee definitely had food intolerances too, something I've learned with Baby Nae is one thing I really wish I had learned sooner, as I think it would have helped significantly with my other babies.

I'm so thankful that--I forget whether it was through a lactation consultant or just googling symptoms--I came across the La Lache Leage International page about oversupply and overactive letdown and a few others on the topic. http://www.llli.org/faq/oversupply.html

All four of my babies had many of the symptoms listed. With their rapid weight gain combined with other symptoms, there was no doubt that we had this issue. (Note: some babies actually have trouble getting enough milk because of overactive letdown, so not having rapid weight gain doesn't necessarily rule it out, but it is one factor a lactation consultant will consider.)

Baby Nae had the same kinds of symptoms the older kids had displayed--wanting to nurse constantly, but writhing and fussing even while nursing. Green frothy diarrhea. Massive numbers of wet and poopy diapers, far above average. Arching her back and screaming inconsolably even right after feeding. Copious amounts of spitting up and gassiness. Gulping and spluttering during feedings. More fussing and crying and writhing. Not sleeping unless being held almost upright.

Thankfully, this time around we were able to figure it out and work with a lactation consultant to help manage the issue. The LC showed me some nursing positions to help gravity work to slow down the flow of milk, and I learned how to "block feed"--nursing on only one side for long periods of time. In our case, what worked was about 4-hour segments. I found a smartphone app to help track when I'd fed the baby on which side, and I'd feed her as often as she needed to be fed but only on one side for that 4-hour block of time.

That helped to regulate the milk supply and ensure that Baby Nae was getting enough hindmilk to meet her needs, rather than just getting foremilk delivered fire-hose style at every feeding. Within a week or two, it was so much better. The "colic" was gone.

Which meant that my fussy, colicky, inconsolably-screaming baby turned into the intense, social, active, but basically extremely happy child that she is. And, this time around, I get to experience having a baby that I can actually console most of the time when she cries. Usually if she's fussing, there's a reason that I'm able to figure out and fix. I can't even begin to describe how wonderful that is.

Such a simple thing, but it has made such an amazing world of difference.

Scatterbrained, with Heavy Fog.

Eleventy-One Things About Me, #50: I'm not as smart as I used to be.

Note: This is a post I wrote several months ago--actually started writing before I knew I was pregnant. Things have gotten a bit better since then. My doctor told me that it's quite common for pregnancy to make cognitive issues worse; that "pregnancy brain" is a real thing even for people who don't have underlying cognitive issues in the first place. The first trimester was the worst; and was the most frightening since I didn't know there was the factor of pregnancy exacerbating things.

Things have improved a bit, or I've gotten better at coping, since I wrote this . . . I've gotten lost while driving far less the last few months, and have been able to get places in at least somewhat of a more timely manner, for instance.

But as we approach the baby's due date (5 weeks away as of tomorrow!), I know that once the sleep deprivation of having a newborn hits, it's almost certainly going to get worse. Massive sleep deprivation tends to have a hugely debilitating effect on me, which is one of the reasons I've basically stepped out of nearly all commitments for the next year or so. I'm planning ahead for the baby by not planning anything at all. My plan is to stay home, rest, and do as little as possible for as long as necessary. :)

I was conflicted about posting this, but I finally decided to go ahead and put it up. Maybe it will help some of my family and friends understand a little better.


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"You're just so scattered!" the voice on the phone screamed. "You never have it together; you forget things; you're so slow and I always have to wait for you! How could you not have all the information together when you asked me to call you??? You make me crazy!!!"

"I'm sorry," I wept. "I'm sorry."

"Don't tell me you're sorry! I don't want to hear that! Just--just stop being so scattered!!! I want nothing to do with you any more. I've had enough of you. I don't want you in my life, and I don't want any dealings with you, ever again!"

More incoherent screaming, and then the phone went silent as the person on the other end slammed it down.

I had tried to share some upsetting news that I thought they would want to know ASAP, and that I felt it would be better for them to hear from a friend than to find out online or in the news. I wanted to shield them, to make the blow softer. But, although I had gone over and over the information before the phone call (both aloud to my husband and silently reading it repeatedly to myself), and had pulled up a web page with the information so I would have it in front of me before I sent a note asking them to call me, my efforts only backfired.

Between the time when I'd first started trying to contact them and when they called me back, several hours had passed, and in the interim my brain had crashed.

I'd opened my mouth to say the name and thought I had said it correctly, but the voice on the other end of the phone told me that I'd said a different name and was yelling at me wanting to know which it was. I didn't think I had said the name wrong, but it was quite possible that I'd said my sister's name instead of my own middle name; the name of someone who had been killed in a tragic accident. Sometimes what comes out my mouth is a different name or word than what was in my brain or what my eyes were reading, and it often happens without my even realizing it.

At that moment the internet crashed (service is spotty out here in the boonies) and the screen went blank both on my phone and on my desktop. My mind went blank with it. I simply could not retrieve the information. The dreaded brain fog and short-term memory loss hit, and the more stressed I got the more my inability to process or communicate information suffered. The harder I tried the worse it got. Even if I'd had written it down on paper, at that point there was no guarantee I would have been able to make sense of the marks on the paper.

I didn't blame them for being upset; I felt terrible for botching something like that so badly, and said so.

I frantically tried to get the internet back up and pull up the information, apologizing and trying to explain what had happened. But by then my "friend" was screaming and yelling, and then hung up on me.

I tried contacting them a few times to explain and apologize, but it did no good. The relationship was gone.

"Just stop being so scattered." If only I could.

A few years ago I had hired an acquaintance to do some work in the yard, and was trying desperately to communicate with him, but having difficulty understanding what he was trying to say, figuring out and communicating what I wanted to say, walking, writing, talking, and just plain staying upright and functional.

Finally, half-joking, I said to him, "You know, I haven't always been this way. I used to be really smart."

His eyes widened. "Really? Wow. What did you say your disease was called again? I had no idea it could do that."

It can, and it does. Studies have shown that several of the conditions I have literally cause brain damage.

I haven't always been this way. It's not because I don't try or don't care. And, yes, it breaks my heart that my disabilities cause so much trouble for others; that it affects so much more than just myself.

No, I won't stop trying to find ways to manage it better; to be more functional. I don't use it as an excuse to stop working at doing better, and I won't give up. But I can't always predict when things will change; when the coping mechanisms that I've been using fairly successfully for the last several months or years will suddenly no longer be enough.

Some days are better than others. Especially if I rest up for several days ahead of time, I can often pull out several hours of relative sharpness and functionality. I can often function decently well, especially in a situation that encourages adrenaline production, and especially if I don't stop or slow down until it's over. But it's difficult to predict when it will all come crashing down, leaving nothing but shards of broken energy and clarity.

Ironically, it's the day-to-day things that cause the most trouble. Getting ready to leave for an appointment is one of the worst. I look at the clock, but have trouble making sense of it. Or I go downstairs and then get there and can't remember what I came for. Things always take far longer than I estimated, and the more stressed I get the longer they take. I drop or spill things trying to hurry. Most of all, I can't find things--I've tried to establish specific places to put things, but that doesn't always work.

I can't find my keys. I look at surfaces and into spaces, but my brain has difficulty registering what's on or in them. I look everywhere I can think of, looking in the place where my keys are three times before I find them. I already looked there twice; how could I have missed them? They were right where they should have been.

But I must have dropped my cell phone while I was looking. I go to look for that, and it's the same thing all over again. I finally call my phone, and find it dropped down behind the bed when I hear it ring.

Then I realize that I have no idea where I put my keys. I had found them; they were in my hand, I remember that, but I have no memory of what I did with them after that. So looking for the keys starts all over again.

I had my purse; I looked in it when I was looking for my keys, but it's not where I left it, so I must have moved it while I was looking for my keys.


I try so hard to get out the door on time. Before long I'm tired from rushing around and going up and down stairs, and it's harder and harder to keep moving. I desperately need to lie down, or at least sit down and rest. I want to just give up and stay home, and if it's not something I *must* do, that's often what happens. But some things can't be postponed. If it can be postponed, by the time I get ready to go I often just end up deciding to stay home, too tired from trying to get out the door to actually go out.

It's not just objects I lose. I lose time. I lose numbers and facts. I lose my train of thought. I lose names, both of people and of objects.

"That thing, you know, that big white thing that keeps the food cold," I say. Or I call a spoon a cucumber, or tell the kids to put the rack on the shoes instead of the other way round. They think it's hilarious.  It's not funny, really, but what can I do but laugh?

"Oh, I do that too," people say. "Everyone forgets things."

I have trouble with my own telephone number; relatives' names; times and dates, even of important events (my wedding, my kids' ages and birthdates, my own age and birthdate). Faces, places, long numbers or mathematics are next to impossible.

I write down an event on the calendar, but put it on the wrong date, or write down the wrong time. Or even if I wrote it down correctly I read a note that I have an appointment on a particular day and time, but that information may or may not sink into my brain. If it does, I may know I have an appointment Tuesday at 1:00, but calculating back from that to figure out when I need to leave and what has to happen between now and then might as well be quantum physics; especially figuring out how much time to take into account for things I drop or lose.

Sometimes I try to count something--a simple number, under 50, or even under 20, nothing complicated--and I can't manage it. I count and recount, but I forget where I was part way through, or I can't keep track of which number comes next, or I count them all but the number comes out different every time. Or I count them successfully, manage to get a number I'm sure is correct--but forget it before I can write it down. A simple task like counting how many places to set at the dinner table and then making sure I get the right number of items becomes terrifyingly frustrating and confusing.

Last week a package was returned to sender because I couldn't remember my address when I ordered it, and gave a conglomeration of our previous address and the address we've lived at now for well over a year.

It's not just an occasional occurrence. Every single time I have to say or write down my address, or my phone number, I'm frantically going over it in my mind, not sure I have it correct. I ask my kids or my husband to double check if they're available, but if they aren't there and I can't find a piece of mail to check, I just have to hope I got it right. I don't even try with my social security number--I know I won't get that right unless I look it up or ask my husband. Sometimes I even have trouble with my own name.

When I listen to phone messages on voicemail, I play each one over many times and am still not sure if I wrote the name and number down correctly. I have to set aside a decent chunk of time just to listen to the messages, and by the time I get through a few, I'm mentally exhausted. It's such an ordeal that sometimes I go weeks without listening to my messages. It helps a lot if the person leaving a message spells any unfamiliar names and repeats numbers twice.

I usually use my GPS even driving somewhere I've gone hundreds of times before, because if I don't I could end up in the next county, but occasionally I get cocky or the GPS won't work. Sometimes even with the GPS I still manage to turn the wrong direction or get on or off at the wrong exit. Lately I try to avoid driving as much as possible, especially if I'm unusually tired or having more brain fog than usual.

A few days ago I got lost picking the kids up from school. I was trying to drive straight from school to home, with no detours. The normally 15 to 20-minute trip took us more than an hour.

The next day I got turned around trying to get onto the freeway near my home, and ended up going north when I meant to go south, but it took a while before I realized I was going the wrong direction. That evening I got lost three times--significantly lost--driving home from my mother-in-law's neighborhood. I can get lost no matter how familiar the route. I drive up to an intersection I've been at hundreds of times before and it looks completely unfamilar, and I don't know if or which way I'm supposed to turn.

We got home, and I was so exhausted and in pain that I had to lie down. The other plans, things I had needed to get done that afternoon and over the next day or two would have to wait. I needed to conserve what little energy I had left for the most urgent things, like feeding the kids. Spoons are in limited supply.

It's been worse lately. Things I used to be able to count on my brain for, it will fizzle out on. I'll think I've planned for all the contingencies, that I have everything under control. Things will be running along smoothly and then, suddenly, I'm figuratively or literally lost; confused about what went wrong. Information that I had at my fingertips is suddenly inaccessible. Something that should be simple to understand makes no sense. A task that should be quick and easy to do demands colossal effort, and takes many times longer than it should.

I can handle the chronic pain, especially if it stays below a 7 or so. But it's the severe, bone-wrenching fatigue and the cognitive issues more than anything else that leave me feeling that both my body and my mind have betrayed me, and afraid of what the future might hold as things progress.

I've been cutting back on my activities and commitments, and even on social outings. Part of it is just that I'm focused on basic survival right now; and things like meals, sleep and the most urgent of the daily chores take priority. But part of it is that I'm afraid to let someone down; afraid to take on a commitment I won't be able to follow through on; afraid of the impact my failures have on others.

Most of the time I still do OK in writing; it helps a lot to be able to look back at what was already said in the conversation, or in whatever I'm writing. And I can take breaks and come back to it later without completely losing my train of thought. So I do much of my social interaction online, on Facebook, message boards, etc.

And, really, it's not always that bad. I am able to function adequately for most things. I don't need to be able to remember what exit to take in order to cook a fabulous dinner. Although I get lost a lot, I do fine with the actual process of driving, and I don't have trouble remembering things like the rules of the road. I even drove to several places today without getting lost once. :) I may not be able to remember my kids' teachers' names, but I can read the kids a bedtime story. If I can't figure out their homework, I can point them to someone who can. Usually I can carry on a conversation and participate in social gatherings just fine, at least for a period of time.

Most of the time, I function well enough that most people wouldn't notice anything amiss, or if they do they just think I'm unusually scattered and disorganized.

Thankfully, I do have people in my life who have the patience and understanding to love me and want to spend time with me anyway. Those are the people I need to surround myself with. I can't spend my limited functional time and energy going overboard trying to maintain relationships with the people who can't or won't understand that I don't struggle with these things on purpose just to make their lives difficult; or who think it's because I don't care or don't try.

Of all the elements of my health issues, it's the cognitive issues that scare me the worst. I find myself writing things down when my mind is relatively clear, hoping that somehow it will help me and/or others later. I can usually do better in writing than with other types of communication, because I can go back to read and re-read what was already said. I'm so thankful to be able to go back and read blog entries I wrote about my kids and about events and people I'd never remember otherwise.

A functional mind is a precious thing, and feeling that it's slipping away and not knowing if or when it will come back is far worse than any physical pain.

Long Time No Blog

Wow, it's been about a year and a half since my last post. So much and yet so little has changed since then.

We sold our house and moved from the suburbs to acreage in the country, not too far from our extended family. We absolutely love it here. Our neighbors are all farmers and we are surrounded by cattle, horses, pigs and poultry.

We've added chickens, coturnix quail and midget white turkeys to our menagerie, as well as three mouse-hunting cats (one old black cat that had been a stray and stayed with the house when we moved in, and two sweet blue kittens). We still have rabbits, which we raise and show, and our sweet dog, who loves living on a farm and makes it her responsibility to make sure all the other animals are safe.

Not a week passes that one of us doesn't say aloud how much we love living here. It's so wonderful.

I've become a 4-H leader and am loving helping kids learn about rabbits. We have a really great group of kids.

DH is still working at the same job; computer programmer and general computer guru.

We're still attending the same church, and are involved in various small groups and ministries.

This year and last year, the kids have been in a hybrid program where they attend school half of the week and do their assignments at home the other half. It's been a fabulous fit for our family. DH takes the girls to school the mornings they have school, which allows me to sleep in, and usually I pick them up in the afternoon. The extra rest really makes a difference for me, and I'm able to be more functional.

My health issues are still there, and still fluctuate, but are a constant challenge. I'm still far better than I was a few years ago, though, and am still able to do quite a lot as long as I pace myself and plan for the inevitable resting up and recuperating time before and after any activity.

My sister saw a geneticist who specializes in connective tissue disorders, and was diagnosed with a hereditary connective tissue disorder. Probably some version of Ehlers-Danlos Syndrome or something very similar, though the tests to verify which version don't yet exist (it's not one of the few very serious types that tests have been developed for).

A hereditary issue makes so much sense, considering that both of my siblings and several of our extended family members all suffer from the same kinds of health issues. We're not quite sure whether that diagnosis is instead of or in addition to the FMS/CFIDS stuff, and are still learning about this and what it means.

Largely it makes me a little more careful and aware about overextending myself. While the chance of something like a rupture of a major organ is very small (we don't have the vascular version which carries a life expectancy in the mid-30s due to the high chance of heart or lung rupture), with this type of issue the connective tissue in skin, muscle and joints can suffer permanent damage or wear out preliminarily. From what I understand, any sort of overextension or straining could hasten or worsen issues that could cause more serious long-term disability. Limiting myself in that way is difficult for me with my personality, and I don't always succeed, but I'm trying. :)

My main concern, of course, is for our children and whether they will suffer from it or not. One of our kids is definitely hypermobile, which is one of the big indicators of the disease, but at this point all of the kids are healthy, happy and doing fabulously.

In addition to school, 4-H, AWANA and church activities, the kids are each taking lessons--M&M and Ebee are doing gymnastics (M&M, in particular, is an amazing athlete), and AJ did a couple of sessions of Christian Youth Theater and is now taking dance classes.

Overall, life is good and we feel very blessed.

Dietary/Health Update

In my last post, I invited requests for topics to cover as I (hopefully) start blogging regularly again. Liz requested an update on our family's food issues. I'm going to broaden it a bit to make it more of a general health update. :)

Warning: This may be a long, boring post.

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In a nutshell, we're all doing pretty well.

Ebee is doing great, and seems to have completely grown out of all her food intolerance issues. She still isn't having reactions to corn or soy derivatives, and it's so nice not to have to worry about that any more. Her dietary fructose intolerance has also improved. She can even eat moderate amounts of apple and pear now without getting diarrhea and a tummyache.

She's really growing up, and is reading fluently now. I love watching kids get to the stage where they devour pretty much any book they can get their hands on. She's even reading chapter books now, and is very excited about that. She'll be 6 next month--can you believe it?!

M&M just turned 9, and is such an active, happy kid. She and Ebee are both in gymnastics and loving it, but M&M is really gifted at it. They're taking a break at the moment as all three kids are taking swimming lessons this summer instead of their regular activities.

M&M still avoids eating large amounts of milk, but doesn't seem to have much of a problem with lactose intolerance these days.

She does still have days where she hurts all over and is very tired, especially for several days after a greater-than-usual exertion, which concerns me a bit given the family history, but the pediatrician isn't worried about it. She has very flexible joints (can bend her elbows partially backwards and has mad skillz with her finger joints, etc.) and is more prone to sprains and things like that than the other kids, but she hasn't subluxated (popped out of joint) either elbow again recently, after having it happen about 3 times when she was younger. I think the flexibility really helps her in gymnastics. :)

AJ at 10 is still her quirky, unique, wonderful self. She really loves to sing and has been in a children's choir for the past 3 years, and has gotten to sing solos at their recitals. The teacher said that she feels AJ is ready to move on/up to more focused training and has probably outgrown this particular choir, so we're looking into doing either private voice lessons and/or letting her join a drama team or children's theater.

She's doing much better with her anxiety/OCD-type issues, but still struggles with reading social signals and sometimes knowing how to determine appropriate interactions for a given situation or level of relationship.

We're working with her to help her learn things like choosing to put a hot pack on her head for the heat and pressure she craves rather than trying to push her head under a person or dog when she's overwhelmed or overstimulated. She's working on learning how to learn to read facial expressions and body language better, understanding and respecting others' personal space, and that sort of thing. Lots of coaching and practice, mostly.

She is still seeing a therapist occasionally (although much less frequently now) who helps us with ideas for things like that, and helps her brainstorm things to do to calm herself when she's upset and work through issues she's worried about so she isn't as likely to dissolve into full-scale meltdowns or long-term panic. She has really improved dramatically, and is enjoying life a lot these days.

AJ still sleeps poorly, is having recurrent intestinal issues (diarrhea, stomachaches, gagging sensations and occasional vomiting), and has been sleeping sitting up in bed lately due to how much her reflux is bothering her. The pediatrician said she probably has IBS, but since he didn't really do anything to rule out other causes, I'm wondering if we should pursue that further or not. With her, it's really hard to know how much is actually a physical issue and how much might be related to her tendency to overstress and worry about things.

We've tried a few different reflux medications that the pediatrician prescribed, and he's ready to prescribe something different if the current one doesn't help more than the others have. We've tried taking her off gluten for a few weeks to see if that helps, but it hasn't really seemed to make a difference. She is still lactose-intolerant and avoids most dairy products, but will occasionally make exceptions for small amounts of foods she feels are worth the discomfort. :)

At the advice of the research scientist from the study I was in (on the effects of excitotoxins on fibromyalgia and IBS symptoms) and with the approval of the pediatrician, we are trialing all 3 kids on going off excitotoxins for a few weeks, to see if it makes any difference particularly in AJ's IBS symptoms and M&M's aches and pains.

Since there is such a strong history of people in our family having trouble with excitotoxins and getting intestinal and/or fibromyalgia-type symptoms from them, it seemed wise to try to figure out whether the kids are sensitive to them or not. So we're making sure they don't eat any excitotoxins for at least 4 weeks, and then we'll try giving them something with MSG in it (ick!) 3 days in a row while closely monitoring the effects on them. I was able to get copies of the symptom-charting forms that were used in the study to use in evaluating data for the kids. This should give us a pretty good idea whether they have an adequate blood-brain barrier to tolerate normal amounts of excitotoxins, or if they have inherited the family difficulty in processing them.

Other than that, the last few years we've just basically tried to eat a well-rounded, healthy diet at home with as many whole fresh unprocessed foods as possible, avoid excessive amounts of things like lactose for those we know don't digest it well, and not stress out about what the kids eat otherwise. :)

DH eats whatever he wants, but he is trying to work on eating/drinking a bit healthier and getting more exercise.

For myself, I'm still avoiding excitotoxins. It really makes a big difference in my symptoms and functionality, and whenever I've cheated it has made me so sick that I've decided cheating isn't worth it for me.

I recently had a couple of months of feeling a lot worse, and finally figured out that it seemed to be correlated with eating xylitol. I'm feeling much better after having cut that out.

With having our college student helper move out and life getting considerably busier this year, I haven't been able to pace myself as well or rest as much. A somewhat constant level of "overdoing it" built up over the course of the year to the point where I was struggling quite a lot physically again.

Now that the pace has slowed for the summer (and I figured out the xylitol thing), I am starting to feel better. I'm happy about that. :) We're brainstorming ways to help me pace myself better on a continual basis, including maybe hiring more help with household tasks and changing what we're doing for schooling the kids.

We are still trying to get our house decluttered and organized, get non-essentials packed and put into storage, and get some minor repairs and sprucing-up done so that we can hopefully put our house on the market soon. Our hope is to move to a place slightly farther out in the country with some acreage, a barn, and hopefully a second residence or apartment in case a parent or sibling needs a place to live, since our parents are getting older, DH's mom has early stage alzheimer's, and both of my siblings have disabling health issues.

We've also been researching schooling options, and have finally decided what we're going to do about school next year. But this is already long enough, so I'll leave that for another post.

Addendum

I've been really struggling with health issues and pain/energy levels again over the last several months, so we're looking at where we need to make changes and cut back to keep things more manageable and allow me to pace myself better. We're also hoping to sell our home and move soon, hopefully to a place with acreage where we'll have more room to breathe.

The conversation with AJ was actually one small part of one in which I was partly trying to gauge whether it's important to AJ to keep any of the satins or get some back later, or if she'd be happy to just have mini satins long-term. I'm trying to figure out what's important to all of the kids right now, and which rabbits are most important to them to keep, since we are probably going to be keeping only a very few that they are able and willing to be mostly responsible for on their own.

We do have a couple of rabbit friends who have offered to take some of our stock for the time being and let us have back some of the original stock or their offspring later. I'm trying to make decisions about that right now.

We're currently looking at drastically reducing or getting out of raising rabbits for the time being, and getting back into it later when we move to a place where we can have a less energy-intensive setup and I get back on my feet healthwise.

Filling in the Gaps

I guess I never posted on the blog that NLASS got engaged and then moved out a few months ago to be with her fiance's family. We're still adjusting to that change, but we're managing.

My health is still greatly improved as long as I completely avoid excitotoxins in my diet, although I still have to pace myself and be careful not to overdo it.

We still have our dog, Mira, although I seldom need her help nowadays and she is no longer doing public access training. She is a much-beloved family pet and she still helps me at home on my bad days and enjoys training with me.

The girls and I are raising and showing rabbits, which we very much enjoy. Currently we're in the process of reducing our herd and redesigning the rabbitry to make things more manageable now that NLASS isn't here to help. I hope to have that project completed very soon, and will then turn my attention to more decluttering and organizing in the house (a never-ending project), planning the upcoming homeschool year, and fitting in some fun summer activities with the family.

Turning in the Service Dog in Training Vest

Mira has made a lot of progress in the year and a half I've had her, but it has become clear that we will probably never be able to count on her being 100% unflappable and appropriate in every situation. She just has not been able to completely get past the consequences of having lived in an abusive household before we got her, and having been trained as a guard dog previously. Although she is no longer afraid of most people and situations, it's still too unpredictable what will set off a fear or protection reaction for her.

I've had her in and out of public-access training several times, thought we had worked through things and began gradually working toward putting her back in it, only to have something else pop up and have to pull her out again.

At our last session with our trainer, my trainer and I were sitting at a table talking as people were walking by at a mall. A woman with a large shopping bag came up and was almost right in Mira's face before any of us saw her coming.

She asked if she could pet the dog.

As I said, "No. Please don't; she's in training" the woman moved in even closer toward Mira, reaching toward her. Mira got partway to her feet toward the woman, barking and growling at her. She still thinks she is a guard dog, as she had been trained to be by her previous owner. She knew I had just told the woman to stay away and was going to make sure she did.

At that point we decided that enough was enough, and it wasn't fair to Mira, me or the public to continue putting her in a position where this sort of thing could happen. No matter how careful we are and how much we train, I can't guarantee that it won't happen again with the right trigger. Mira has barked and growled and rushed at people more than once (even though when she had the chance to bite, she just stopped and looked sheepishly at the person).

I do not regret bringing Mira home, and she will still be able to help me a lot at home. She is very good at her assistance tasks and can still help me a lot on the days I stay home and need to minimize movement and exertion. But I have turned in our "service dog in training" vest and will not be doing public access training with her any more.

The good thing is that ever since I was in the double-blind placebo-controlled study through a local teaching and research university, and discovered that my neurological symptoms, balance issues, brain fog, fatigue, pain and other symptoms were hugely affected by excitotoxins in my diet, I've been feeling so much better that I really don't feel that I need a service dog for public access work any more. I am better able to predict and prevent my bad spells, and when I do have a bad spell I pretty much stay home anyway.

Almost all of the other fibromyalgia/IBS patients in the study were similarly helped--84% had more than 30% improvement in symptoms, and some even got to the point where they didn't meet the diagnostic criteria for having fibromyalgia any more after going through the study. It has been very exciting to be a part of that! The study author will be publishing the study results in scientific journals and coming out with a book on the excitotoxin-free diet soon.

So, Mira is transitioning to being an at-home helper and family pet. We're going to continue training, and are hoping to take a "Control Unleashed" class and eventually pass the Canine Good Citizen test. But we have ended one journey and are beginning a new one together.

I'm sad, and I feel that I've failed her. I keep wondering if I'd been more diligent or had done things differently, if the results would have been different. But at this point I know this was the right decision. In a way, it will make life a lot less easier for both of us and take a lot of the pressure off trying to make her fit into a role that she just didn't have the temperament and stability for, and that was constantly stressful for us both.

I am looking forward to continuing to train and learn with her.

Resting and Processing

It's been a very busy few weeks. First, SIL The Mentor and her husband, Science Teacher BIL, and Sweet and Energetic SIL came and spent 4 days helping us do a "total home makeover"--decluttering, organizing, moving furniture, and even doing some painting and redecorating.

Then FIL passed away. All 12 of his children were able to come into town, from as far as Africa and the Middle East. We had a lovely memorial service and lots of family time.

Now we're all tired. But doing OK.

We're also still trying to figure out how to best manage AJ's challenges. We did have an appointment with a child psychiatrist. He interviewed all of us together and then her alone, and put her through some evaluations.

A lot of what he told us after that, we were nodding our heads and saying, "Yep, no surprise there. We could have told you that."

He noted, among other things, that she has an "inflexible mind", has difficulty dealing with transitions and things being different from the way she thinks they should be, and that she has a "low frustration tolerance" and tends to respond outwardly rather than inwardly when frustrated. She's definitely a worrier and tends to get "stuck" on certain ideas or topics, as we've noticed.

He did feel that her high need for alone/quiet time and her tendency to need more breaks/space in social interactions are "a comfort choice" rather than a lack of ability. So that was good to know. She definitely has no problems with her intelligence or attention span. :)

The psychiatrist did not feel that AJ was on the Asperger's spectrum, as has been suggested to us quite a few times in the past. But he did say that she was definitely on the OCD spectrum, and would be a good candidate for medication.

However, he was supportive of our desire to try other things first and only resort to medication if it's really necessary. He recommended that we see a particular therapist who is experienced at dealing with this sort of thing to get some extra tools, and also continue doing the play therapy and increasing the structure and predictability of our environment at home.

I'm not exactly sure what "on the OCD spectrum" means. When I researched the term "OCD spectrum", I found that it encompasses a HUGE range of issues, including everything from autism to eating disorders.

I think it could mean that he didn't feel a firm diagnosis was necessary or appropriate for AJ's age and situation, but that he wanted to give it enough of a label to give us some direction in pursuing resources and solutions that would be the most effective for AJ's particular quirks.

I do think that most people have some level of OCD or other quirks in their personality. If we didn't have some OCD tendencies, there wouldn't be so many of us that find Monk amusing. :)

It's really not something to worry too much about unless it's significantly impacting a person's ability to function in and/or enjoy life. AJ's functionality and enjoyment of life is impacted at some times more than others, but overall it had gotten significant enough that it was appropriate to seek some information that might help us parent her better, and some help learning tools to manage it.

For AJ, we're hoping to gain some helpful tools for teaching both her and us how to help her brain get "un-stuck" when needed, and how to cope with it to minimize the extreme frustration and discouragement she often feels.

My sister Sparrow has struggled with OCD that was definitely at the point where it was having a huge negative impact on her daily life and relationships, and medication is one of the things that has been very helpful for her. So it's something we would consider in the future if necessary. But I'm not anticipating that happening any time soon, if ever, since the other things we've been trying seem to be working fairly well so far.

Influenza

I've had the flu for 9 days now. The body aches/headache/fever/cough version. Influenza, the real thing.

I haven't taken my temperature yet today, but it's just possible this could be my first day without a fever.

I did go to the same-day clinic yesterday. The doctor said that my chest and lungs sound fine, but the cough could last for another 2-3 weeks or more.

At least I'll be immune to this strain after this, hopefully.

Bullet Points of Busy

• M&M is doing her last Singapore math lesson for the school year! She's very excited that she's about to finish her book. AJ has quite a ways to go in hers, but I may not have her finish it because she has been so insanely frustrated with it lately. We borrowed Ray's Arithmetic from my mom, and both kids are really enjoying the all-verbal/hands-on approach it takes in the younger grades. I think we will use that for summer math.


• The girls all had big milestones recently. AJ learned how to ride a bicycle without training wheels, M&M learned how to use the monkey bars, and Ebee is picking up letter sounds, writing simple words, and rhyming like crazy.


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• The two older girls and I are going to our third rabbit show this weekend. We're excited about that.
  
  One of our mini satins won Best Opposite of Breed in the last show, and the judges really liked our junior full-sized satins but said they were slightly too young to really compete against the seniors. So we're hoping for good results this show. We're also taking some rabbits to sell, to cut down on the number we have.
  
  AJ and M&M each picked one of the baby mini satins to work with and train to pose for showing, so they're very excited about showing them this weekend.


• Our homeschool co-op and AWANA are over for the summer, but we're not finished with school yet. I trimmed our school schedule down to the bare essentials, though, and structured it so that we (or at least AJ, who seems to need the extra structure and predictability) are doing the same things in the same order every day.
  
  If we work diligently at it, the kids are done with school before lunch. It's nice to have the afternoons free for playing/pets/resting/reading/whatever.


• I haven't blogged about this recently, but AJ is still having trouble processing things like change, transitions, anything being different from the way she thinks it "should" be, worrying a lot about little things, and general emotional outbursts/moodiness. The play therapist (and other specialists we have consulted) thinks she needs something beyond what we've been doing, and needs to be evaluated by a specialist.
  
  Due to a cancellation (and an answer to prayer!), AJ has an appointment with a specialist today. Originally the appt had been scheduled for the end of Sept, and the dr's secretary told me they are now scheduled out to the end of Oct, so it's pretty amazing that we were able to get in so quickly. I am not sure what kind of testing and/or evaluations he will do, but hopefully he will be able to figure out what's going on with AJ and what types of responses and methods would be most helpful for us to use as we interact with her. Mainly, we'd just like to see her be happier and less frustrated with life.
  
  She's rather excited about the appointment. I explained to her that it was a special kind of doctor who helps kids figure out how their brains work (because everyone's brain works differently) and that he would hopefully be able to help her (and us) figure out how to work best with her brain to help manage her emotions and actions better.


• Otherwise, we're all doing well. DH is working and thankful for a good job with great job security, we're involved with church activities and friends, I still struggle with health issues but the Lord is faithful to sustain me, we're again (still) trying to get our house decluttered and organized, the cleaner is still coming every 3 weeks or so, Mira is doing very well with her training, NLASS the college student is still living with us (and we're still finding it a blessing for us and for her), and we're enjoying our pets and other activities.


• Ebee still has no signs of food allergies, though she still has mild reflux and aspiration issues and we still have to be careful about feeding her too much fruit or sugar because of her sensitive stomach and frequent diarrhea.
  
  Now that we know (thanks to the research study I was in) that excititoxins are a big factor for my IBS, FMS and CFS symptoms, as well as the neurological and migraine symptoms, we're trying to avoid those as much as possible for the whole family. Those particular ingredients aren't particularly healthy or necessary to be eating, anyway. Who needs MSG? So that's brought us back to a bit healthier (though still much less restrictive than before) diet. We had gotten in the habit of eating more junk and convenience food again once we didn't have to worry so much about allergens, so this is a healthy move for us.
  
  Interestingly enough, I noticed in looking back over the notes I took on Ebee's symptoms, that some of her "unexplained" diarrhea and stomach issues may have also correlated with excitotoxin ingestion (though I didn't know many of the hidden sources of it at the time). It would certainly explain why Ebee and I (and the other kids to some extent, too) got so sick the week we were eating a lot of bread made with modified tapioca starch, for example. So that's something I'll be keeping an eye on to see if it has any effect on her still-frequent bowel issues. We know that MSG and other excitotoxins also affect the health issues in my extended family, so it's definitely something to at least keep an eye on if not completely avoid.
  
  M&M's legs seem to hurt less when she wears shoes with good arch support for her flat feet, and we all generally enjoy one another's company. The girls all have appointments with the pediatrician next week, but they're just routine checkups.
  
  We will have to decide what vaccinations, if any, we're going to do for Ebee now that she no longer has allergies to corn and soy derivatives, which are in all the vaccines. I still have concerns about some of the other ingredients (like MSG and aborted fetal tissue, among many others) in some of them, and some just simply aren't really necessary at her age, so it will be something we discuss with the pediatrician.


• Oh, and the older girls have learned how to play Dutch Blitz, which is a riot. M&M is particularly good at it and begs to play it often. And the whole family, including Ebee, enjoys playing Carcassonne together.

Busy

I thought you all might enjoy this fun picture of Mira and Gingersnap. Aren't they cute together?

I took some photos of baby bunnies this week, and will hopefully get a chance to post some soon. We've sent to pet homes some of the satin babies that weren't show-quality but had great personalities, sent to freezer camp a few that had health or temperament issues, and are looking for homes for a few more bunnies.

Hopefully we'll be trimmed down to just a few of the best satin and mini satin rabbits before too long. I might also keep the mixed-meat-breed doe, because she's such a wonderful mother and is a great resource as a foster mother while also producing amazingly fast-growing and healthy babies.

Life has been busy, but good, lately. With kids, homeschooling, housework, adding the extra family member, dog training and doctor appointments, plus DH working extra hours due to craziness at work, I have had my hands full.

The college student who is living with us--we'll call her Name-Like-A-Semiprecious-Stone, or NLASS for short--fits in pretty well with our family. She enjoys being here, and we enjoy having her.

Several of you asked what excitotoxins I am avoiding. Yes, artificial sweeteners are on the list, as are natural and artificial flavors. Also any kind of modified starch or modified protein, or extract of a protein/soy/yeast. Soy sauce, of course. And dough conditioners--the stuff that makes bread soft, like L. cystine (not sure if I spelled that right). Who knew? Actually, just about any food with additives is likely to have excitotoxins in it. The actual full list is a full page long, but I'm not supposed to publish it or give it out to people until the study is over.

At least it's not like a food allergy where I have to be 100% compliant and completely avoid everything that might contain any amount of an excitotoxin in it.

Right now I'm beginning the slow process of trying to figure out what levels I can tolerate, and how sick different foods make me. And then deciding which foods are worth what level of illness at what times. Great fun. :)