Tuesday, November 12, 2013

Farewell, Blog

Over the past year or so, I've been feeling more and more like it is time for me to close out this blog. One big reason for this is that I'm working now, and that means a) I am writing more in other ways and find I have less of that need to empty out what's in my brain (even though I'm doing science writing, not anything personal) and b) I have less time total, as well as less free time that I can/want to use sitting at the computer concentrating and writing, seeing that this is a good description of my job. Another big reason is that as our kids get bigger, I feel differently about writing about their lives. When they were tiny babies, sharing about my life with them felt natural; now, I am more aware of their ownership of their own stories, and how the job of telling their stories belongs to them and not to me. I think it's possible to write about my experience of life, including parenting, in a respectful, appropriate way but it feels time to call this blog finished. I started writing this blog right when Grace was born and Lewis turned 2 this fall, so I've begun to think of this whole blog as a record of the baby years of our family -- the seven or so years where our lives were wrapped up in these new, tiny lives who were joining our family. I don't expect our lives to become un-wrapped from our children, of course, but we are moving into a new season of life.

I wanted to get all these posts and pictures and everything into a format in the real world somehow, so I decided to declare this blog finished as of Lewis' 2nd birthday and put together some books with all the writing and photographs. I never did traditional baby books for the kids, so I got copies of these for them, as well as us, and hopefully it will be something that gives them a glimpse into the early years of their childhoods.

Six years of writing

I did these books through Blurb and they turned out BEAUTIFUL. I sort of used their slurping blog-to-book thing they do, but I had to manually do the formatting to get it to look the way I wanted. It does blow my mind a bit to consider how much work is in these books, between the original writing and then the putting them together in this form. Making these books was not a quick process.


So that is that! I have started a Tumblr, to give me a spot to write when I feel like it. I don't plan for that to be a record of our family or anything, but rather a place to write in a shorter, more random form. So far it seems like there's a lot of food things related to Lewis' health issues. I also have another Tumblr that is just random, interesting things from around the web. You can also find me on Twitter (or Pinterest or Facebook) but not here any longer. Adios, Blogspot!

Saturday, August 31, 2013

Two Years of Lewis

Today is Lewis' birthday and he is two entire years old. We went to the farmers market to eat lunch and play on the playground, we opened presents from our generous family, and soon we will have some delicious cake with singing and candles. I am so thankful for this sunny, joyful boy, and I am so happy to be celebrating a new year of his life.

Smiley boy

He is talking up a storm these days, putting words together into sentences and working so hard to communicate with us. The changes in his verbal skills are so fast and furious; already some of the sweet/hilarious mispronunciations are falling by the wayside. For a long time, he called Violet "Butt", which I admit we thoroughly enjoyed. He has added some more syllables to her name now, so it is more like "Bioyet" -- closer to accurate but sadly not as funny. He does still call Legos "WAY-gos", so that's something.

We have experienced some kind of potty-training miracle with Lewis. About six weeks ago, we were at Chipotle for lunch one Sunday and he said he wanted to go to the bathroom. He pooped in the toilet at Chipotle, which was the first time he had used a toilet EVER, and things have been going quite smoothly ever since. He is not accident-free or anything, but he is super eager and cooperative in all potty matters. Earlier in the summer, I had said to myself, "Wow, I probably have only one year of diapering left EVER," thinking that he would potty-train next summer right before he turned 3. I guess I was wrong!

Lewis is the first of our children to potty-train before he weans or grows out of a nap, which has felt different and odd. He's pretty much grown out of baby-wearing as well at this point; the baby carriers are sitting seldom-used in his room where he sleeps in a twin bed and there is no diapering station set up anymore. It's pretty hard to wrap my mind around being nearly finished with the cloth diapers and baby slings and high chairs and breastfeeding and baby beds and all that; all that has been such a big part of my life and my identity for the last 7+ years. Lewis is even starting preschool this fall; he'll go Tuesday and Thursday mornings at the same place that Violet is going to pre-K.

Lewis got his first haircut this summer. He had been looking pretty straggly with crazy/uneven curliness going on, but I kept putting off doing something about it. I was worried that the little kid hair place I usually take the girls would make him look really conservative; I like longer, scruffy hair on little boys. One day, Rob had an appointment to get his hair cut and on the spur of the moment, we asked the guy who cuts Rob's hair to give Lewis his first trim. The vibe of that guy is such that I did not worry about Lewis coming out looking too conservative :) and it turned out really cute.

Lewis' first hair cut

Lewis has been on an elimination diet for a couple months now to try to figure out his various health issues. We went to an allergist that Rob thinks really highly of to do a bunch of food allergy testing; he didn't have a positive skin test to any of the commonly allergenic foods but unfortunately those tests aren't a perfect way to figure out what foods are troublesome for someone with eosinophilic GI disease. If someone has an IgE-mediated allergy to a food (which is what those tests test for), it is more likely to be a problem for eosinophilic GI disease, but it's not a sure thing and it's not always the only foods that are troublesome. Anyway, we started by taking wheat, dairy, egg, and soy out of his diet. One of the very first mornings, I gave him a little container of coconut milk yogurt and he had a classic allergic reaction to it, right there at the breakfast table. It felt really discouraging, because I thought that I had come up with something he could/would eat and then KABOOM. NO. We went back to the allergist to confirm that yes, he has an IgE-mediated allergy to coconut (which is really rare, it turns out). It's possible that coconut is the ONLY thing that he has an issue with, which would be great; I did cook with coconut oil and milk a good bit, so that could have been the source of the problem. We are staying on the whole elimination diet, though, (since we had already started it) to make sure we figure out what the problem is. Since we started the diet, he has not vomited once and his gagging/coughing/choking has drastically improved. We had a repeat swallow study (swallowing more barium, yay!) last week and it showed that he is not aspirating liquids anymore, which is such, such good news. It's likely that the combination of the diet and the reflux medication has let the damage in his esophagus/wherever heal so that he can feel enough to swallow correctly. So now we will start reintroducing some of these foods again (aside from coconut) to see if he can tolerate them. Since eosinophilic GI disease is not the kind of thing where a problem shows up immediately when you eat a problematic food, we'll do one food for a month and see if he has problems. We're starting with eggs for a month; we'll see!

Sweet Lewis

So that's the news with Lewis on his 2nd birthday. He has brought so much happiness to our family, showing us who he is today and who he is growing up to be. He is our only child to get my eyes; Grace's are true blue like my parents', Violet's are deep brown like Rob's, but Lewis' eyes are the changeable grayish/greenish/blueish color of mine. The magic of knowing a new small person, with all the unique particulars of who he is, is no less the third time around. I am so full of thankfulness that he is here in the world and with us.

Happy birthday, sweet boy.

Monday, June 24, 2013

Midsummer Blur

Spring has passed into summer in a haze of medical drama, family/children's activities, work, and trying to stay up on laundry and making dinner. The solstice has come and gone, my hemisphere is tipping away from the Sun, and I realize more as each week passes that these are the blurry years, a whirlwind of three small people and two jobs and two schools and a house and piles of laundry. I'm content -- happy, even -- but I seldom catch my breath.

In some rather unfortunate twist of medical bad luck, very soon after I wrote that last post about Lewis in May, Grace got really sick. It was an unprecedented level of illness for our family, all the more unnerving because Grace usually gets the least sick of anyone in our family. When we pass a virus around, Violet and I tend to get the most dramatically ill while Grace will be grumpy for a day without any actual symptoms. She came home from school with a fever one afternoon and then her fever stayed very high (often over 104°) for several days. She wouldn't eat and would barely drink, medicine wouldn't bring her fever down, and she was disoriented and confused. Her fever got a bit lower after a few days (102° or so), she had a positive strep test but then did not get better on antibiotics, and we ended up being concerned she had something really bad because of some of her other symptoms. We were within about a day of admitting her to the hospital when her fever FINALLY dropped to 100° and lower. In hindsight, the best anyone can guess is that she had some crazy virus (that none of the rest of us got? I still am not sure that makes sense...) but whatever it was, I am just glad it ended without any worse outcome than Grace losing some weight and missing a week and a half of school.

Soon after that, Violet had her last day of preschool, with a party and opportunity for me to reflect how well her time at the JCC has gone. I am very thankful for her teachers and the professional help we've pursued, as well as her own amazing self; she is in such a different place than she was 9 months ago. She still does not have a diagnosis or label, and it's looking likely that she won't have one, but I feel very good about the help we've gotten through the Children's Center and the change we've seen in Violet. We'll be back at the JCC for Violet's pre-K year in the fall, and then I don't know what we'll do. BECAUSE SHE IS READING. (Or is very close, at least.) She is about a year ahead of where Grace was at the same age reading-wise, and as she doesn't have the people-pleasing personality full of empathy and maturity that Grace has, I feel very uncertain about regular kindergarten. We'll cross that bridge when we get to it, I suppose.

Last day of preschool!

At the very end of May, Lewis had his procedure at the hospital. On one hand, everything went smoothly and safely and the doctors and nurses were all fabulous; on the other hand, GAH I never want to do anything like that ever again.

Lewis in his hospital gown and his hospital car

We were at the hospital for about 5 hours total, less than 2 hours of which he was under anesthesia. They did a great job at the children's hospital being sensitive to the kids there and making things easy for them; this picture shows him in his little hospital gown and his hospital car that he got to ride around in from one place to another. He was pretty grumpy by the time they actually took him back for his procedure because he was so hungry and thirsty (from not eating/drinking for so long) but in general he was content. He came out of the anesthesia calmly, and then he nursed pretty soon after waking and was pretty easily comforted. He seemed out of sorts and sleepy the rest of the day, but he wanted to eat, didn't seem to be in pain, and didn't throw up or anything. I was a bit of a mess at the hospital (crying when the nurses asked me what would comfort him if he was in pain, etc) but really, it could hardly have gone any more smoothly.

The ENT said he saw a lot of inflammation in his airway consistent with him aspirating but did not find any reason why he is aspirating (no clefts or other anatomical problems). Our GI took biopsies and they showed that he has moderate reflux damage in his esophagus and eosinophils in his small intestine, which is like a food allergy thing. Neither one of those seems like it's the big explanation for his aspiration that we've been looking for, but we're trying to move forward and figure out what to do next. Last week, we had a feeding evaluation with a speech therapist (who it turns out are the people who do feeding/swallow therapy). I was expecting that this would be the beginning of swallow therapy, i.e. fixing all this, but the therapist concluded that he does not have any oral motor problems that they can address with therapy. This came as a surprise to me and felt kind of frustrating; it's good news that he doesn't have any oral motor problems but I was thinking the swallow therapy was going to be the thing we did to fix everything. Apparently not. We do have some things we're trying (new kinds of cups, thickened liquids, etc) and we're headed to see an allergist (OH, THE IRONY...) next week to see if we can figure out any food issues he has. He is still vomiting pretty frequently, and he still does a lot of coughing/gagging; we can maybe convince ourselves that it's started getting better since we started the reflux medicine? I don't know.

I thought I was coping OK with all of this, but in the week after Lewis' hospital thing, I lost my voice, had all kinds of GI misery, and got two migraines. It was totally stress; these are all the quasi-psychosomatic things my body does in times of high stress. Life needs to CALM DOWN. Also, I need to figure out how to cope with stress.

At the beginning of June, Grace had all her festivities to end her time in 1st grade. There was a school-wide fun run...

Fun Run

And a big 1st-grade performance (Grace is one of the ones in red on the front row)...

End-of-year performance from all the 1st graders

And then walking off to her very last day as a 1st grader...

Last day of 1st grade

And now we are deep into summer. Our CSA is bringing us lots of beautiful vegetables, Grace is on a swim team at the JCC, and we have turned on the air conditioning in our house. Violet is going to a social skills group at the Children's Center over the summer. It's pretty interesting, actually; it's like a preschool environment with crafts/games/songs but all the activities are specially designed to develop the children's peer-to-peer interaction skills. She's the only one in her group without an autism/Aspergers diagnosis, but they are all about at the same level verbally so it works well. The clinicians in the group are students getting their masters in speech therapy up at the university here, and the two that Violet has in her group are amazing. And then Grace is doing some science camps at the natural history museum and Violet is doing gymnastics. Lewis is learning new words every week, frustrating me with his unpredictable napping, and giving the best hugs. It's all going by in a blur, but it's a blur of the amazing, tangled, messy, and beautiful.

Wednesday, May 8, 2013

Little Lewis, Heading to the Hospital

I briefly mentioned in my last post that we've been dealing with some rather serious health issues for Lewis (who is 20 months old now, as a reminder) lately, so here is the TL:DR version.

Gradually over the past 6 months to a year, Lewis has developed a coughing/choking problem. The cough/choke sometimes turns into a cough/choke/gag, and a handful of times it has turned into a cough/choke/gag/vomit. It has gradually been getting worse; I think the first time Rob and I looked at each other and said, "That's weird," was about 6 months ago. We've noticed it when he's eating and drinking, but sometimes also at other times. It's worse when he is sick, and it has gradually been getting worse overall so that he's actually gagged and thrown up a few times in the past month. (One time, with a bunch of french fries at a restaurant-- SARCASTIC YAYYYYY...) It was those occurrences that finally motivated me to call the doctors and get this figured out. We started talking to our general pediatrician and also asked a friend we go to church with who is on the pediatric GI faculty at the U (who also writes for the Biologos Forum!) what he thought. Our GI started Lewis on reflux medication (because it seems like it might be reflux-related?) and sent us for a swallow study a few weeks ago.

The swallow study is where they watch you swallow foods of different textures and thicknesses mixed with barium via some kind of X-ray imaging; they can see if you are having problems swallowing, which is turns out that Lewis is. He is swallowing liquids into his lungs, apparently all the time. During the swallow study he sometimes swallowed liquids into his lungs without coughing, so it looks like he is aspirating even more often than he is coughing/choking. (During the swallow study, he aspirated with EVERY swallow of liquids, actually. He is swallowing solid food with more success.)

Aspirating, it turns out, is very bad and it is something of a mystery as to why Lewis is as healthy as he is, why he has grown so well, why he hasn't had pneumonia, why he breastfed without any big problems, etc. The most likely scenario is that he has been doing this since birth (he hasn't had any strokes or brain injuries that would make him start swallowing incorrectly) so it is indeed puzzling. One factor in his favor is that he has been breastfeeding since the beginning. It turns out that aspirating breastmilk isn't that bad for you; it doesn't easily grow nasty bugs to give you bacterial pneumonia and it isn't irritating to the lung tissues. I am once again so thankful that breastfeeding has worked out for us and our babies; we likely could have been dealing with all these health issues when Lewis was a tiny newborn instead of a strapping, healthy toddler if it hadn't. I don't minimize my own preparation and commitment in making breastfeeding work, but some of it really is out of my hands, and I am so thankful. I'm actually REALLY thankful right now because we are not supposed to give Lewis any liquids but breastmilk, not even water, until we get this sorted out; water in your lungs is irritating and there is a risk of him getting pneumonia from it. He had been down to nursing just a few times a day but I'm trying to get my supply back up and Lewis to nurse more frequently. I will admit that we haven't totally cut him off from water, because he is finding it upsetting when he feels thirsty. It's a risk, but as Rob keeps pointing out to me, he has been drinking water for a year without anything really bad happening. It is stressful, though.

So now we have to figure out why he is aspirating. One possibility is that there is something anatomically wrong (like a cleft or a fistula or a hole or something), another possibility is that it's really terrible reflux or something similar (it turns out that you can get reflux so bad that you lose sensation in the back of your throat and can't coordinate your swallowing), or another possibility is that he just plain never learned to swallow correctly, for unknown reasons. The positive here is that there is a way to fix any of those problems: surgery or medication or feeding therapy or some combination of those. We went to an ENT surgeon recently to talk about all this. They put a tiny camera up his nose and back into his larynx, which was strangely non-upsetting to him. He wasn't sedated or anything, just sitting on my lap. He squirmed when it was going through his nose but he sat there, totally calm, once it was back further (because he can't feel anything back there?). The ENT couldn't see any huge/obvious anatomical problems but he did see a lot of irritation and inflammation like he has reflux. The uncertainty is if the reflux is the original cause of the whole thing or a result of another problem.

Some of you who know me in real life might remember that WAY back when he was 6 months old and we first started feeding him solids, he had some swallowing issues. When we first offered him any foods, he would gag while trying to swallow and then vomit up everything in his stomach. He did that for about a couple of weeks, then figured out how to choke the food down, gagging but not vomiting. A few weeks after that, he figured out how to coordinate his swallowing enough to eat solids pretty normally, and we went merrily on our way, thinking he just had a strong gag reflex and he figured things out. But did he? Or was that part of what's going on now? We still don't quite know.

The next step is that Lewis has to have an outpatient procedure where our GI and our ENT will check things out in more detail. They have to put him under general anesthesia (aaaaaaaaaah...) but I guess it's not exactly a surgery because they are just looking at things? From our end, the experience will basically be like an outpatient surgery, though. They will do an endoscopy and a laryngoscopy (i.e. they will look at his esophagus and his airway in detail) and hopefully we will know where to go from there. If there's something anatomically wrong to fix, we can fix it. If not, we will do feeding/swallow therapy. In the meantime, we keep him on the reflux medicine (which he has been on for a couple weeks now and maybe Lewis is choking/coughing less? I don't know...), he gets to nurse as much as he wants, and we hope and pray that he continues to avoid pneumonia. His procedure is scheduled for May 30, three weeks from now.

We are feeling a bit surprised and shaken by all this, as Lewis has never been sickly or seemed vulnerable health-wise. We are definitely dealing with some stress and anxiety about the situation, but we feel confident in our doctors, the children's hospital here where Lewis will have his procedure, our support structure here in Salt Lake, and the care of the One who loves Lewis even more than we do.

Monday, April 29, 2013

Spring Has Come, At Least For a Few Days

It is so warm! We have had our first 70° days within the past week and have been soaking up the balmy sunshine, at least until the chilly weather returns. (Which is tomorrow, it looks like.) We went to the zoo yesterday and although I don't necessarily recommend going to the zoo on the Sunday afternoon of the first warm weekend of the year (so, so busy! we are at the end of our year's membership at the zoo and I have never seen it like that), we had a fun time. The girls rode the carousel two times each. They like the carousel better than the actual animals, which seems like a failure of some kind on our part?

Rob & the girls waiting to go on the carousel

It's been a nice spring for us. We had Passover...

Preschool Seder

And then Easter...

Pretty eggs

And I am having a good spring as far as body image and feeling at home in my embodied self. For starters, I have been exercising very regularly. Since Violet started preschool at the JCC in January, I have been able to put Lewis in the hourly childcare there and work out more frequently than I have in a very long time. Just doing that really has helped me feel better, physically and mentally. And then I have seen actual changes in my body from this on a shorter timescale than I would have guessed. Influenced by Rob and his Crossfit ways and all the hype about Paleo everything, I have been focusing just on strength training. Strength training is like MAGIC, you guys. I'm doing classic weight-lifting things with barbells (not machines) and I've got to say I've never seen any exercise change my body so quickly. And the exercise itself is not burdensome, which is very helpful. I wouldn't say it's my idea of a fun time or anything, but it is infinitely more pleasant than trudging on an elliptical forever or step aerobics or running or things like that. I lost 2 inches around my hips last month, my rings all fit again, people have commented on my face looking thinner, and most of my pre-Lewis clothes fit now. Interestingly, I have not lost much weight since the beginning of the year (that whole muscle vs. fat thing, I guess). We'll see if I eventually do lose weight or change size more, but to be honest, at this moment I don't care very much. I feel better, and I look better.

When I go to the gym, I shower there while Lewis is still in the childcare (because trying to shower at home without another adult to watch him is still AWFUL). Showering in the locker room there has been another body image epiphany for me. There are other naked women in there and it turns out that WE ALL LOOK PRETTY NORMAL. It turns out that women, even women who are exercising at a gym, come in various sizes and ages and shapes and that's totally OK! We're all OK! A nice epiphany.

I've been wanting to get my nose pierced for a while and I had been holding it out as a reward for getting back to my pre-Lewis weight. Lately, I've been thinking that that maybe isn't the healthiest way to go about things. At some level, I don't really control the number on the scale; I control the choices I make about food and stress and sleep and exercise, but it's a complicated physiological equation that translates that to my weight, and my weight per se isn't really what I want to spend my time focusing on. If I want my nose pierced, maybe I should just go get my nose pierced. So I did.

Here's an inside-the-car selfie (about a week post-piercing), complete with toddler photobomb, for you to see the result:

 I got my nose pierced!

It's been about 10 days with the nose piercing now and I really, really like it. It's been healing well (there have only been a couple instances of a child bonking my face -- OW) and I feel like it looks really "right" on my face. A bunch of people haven't even noticed, which is rather hilarious (people are not thinking about me as much as I think they are), and I've seen a few people do double-takes and visibly think, "Did Julia always have that?" And then a few friends have said that they're just surprised I haven't done it before now. I am so happy with it, which contributes to my general positive body image this spring.

Less welcome this spring, we are dealing with some health issues for Lewis. We are still in the midst of tests and procedures and appointments and figuring stuff out; it has happened sort of fast, from our perspective, but on the other hand, it seems to be explaining some weird stuff that's been going on with him for months. I'll write more soon when we have more actual information about what's going on. Short, preliminary version: he has some kind of swallowing problem and is aspirating liquids, and we need to fix it. Fixing it will involve either surgery (aaaaaaaaaaaaaah...) or swallow/feeding therapy. UGH. It's definitely serious, but right now the things that need to be done seem pretty clear-cut and obvious. Hilariously, when they gave me the info on the possible swallow therapy, it was for the exact same therapists that I had just taken Violet to for a speech/language evaluation. "BUT I WAS JUST THERE..."