Back at CHOP

I started this blog back in 2007 as a way to chronicle our family, but especially Oli's journey. When he was born, I didn't really know what to expect in terms of his medical needs. Although his early years included a lot of doctor appointments, the last few years have been relatively low key. He decided about two years ago to stop walking with a walker and HKFOs (big braces), and now gets a new set of AFOs (smaller braces) about every other year, and a wheelchair every five years or so. We have his bowel routine down, and he can even do his enema on his own. He cathes at school, but doesn't take medication for social continence. He's not interested in that right now, and we have been respecting that.

Yesterday, we had to take Oli to CHOP urology for a video urodynamics study.  We were in the newish Buerger building, which is beautiful, but I miss the memories that I get to revisit in the old building. In the Wood Center/main building, where I used to take him for eveything, I get to walk the halls we walked when he was a baby, eat in the cafeteria where I have had countless meals during visits, and walk psat the NICU where Oli stayed when he was born. I also miss visiting the fruit truck outside the hospital, which is now gone because CHOP and Penn take up so much room on the block. A good thing for sure, but sometimes even small changes are a little sad.

For the VUD test, the doctor essentially fills his bladder, and then views it through xray imaging and measures spasms. This is the first time that they have felt that something was off. With very little urine in the bladder, he starts to spasm, and then leaks. Apparently, the spasms aren't good for the bladder, which is the first line of defense for the kidneys. So we protect the bladder to protect the kidneys. This means he has to go on medication to relax the spasms, which has the side effect of him leaking less. This is the road to social continence, or not wetting between cathes, but as I said, he just hasn't been that intersted. Much like I often "hold it" if I'm busy, Oli hates stopping what he is doing to cathe. But now, we will have to enforce it. I don't like the idea of him being dependent on another medication, but in the long run, I think regular cathing will be good for him. We are hitting an age where his differences are becoming more apparent, and I don't know how this will affect him. My hope is that getting a good routine down now will help him as he gets older and wants to do more and be out more. 

The Side Effects of Stress

So, it's been a while! But I'm officially coming at you from the other side of tenure. Tenure really is all it's cracked up to be, and I feel like I have found a good groove professionally. Although I remember being stressed out by the tenure process, it is almost palpable as I reread old posts. Although I made it through, there are definitely lingering effects that I am still dealing with over two years later.

 I had to hand in my tenure dossier in fall of 2015. The week I had to turn it in, I developed acute stomach problems, most notably, constipation. I know, possibly TMI, but the last few years have taught me that almost everyone has poop issues in one direction or the other, and that we need to talk about it more to help each other out! That started a spiral to bloating and then food intolerances. In summer of 2017, things got out of control and I started to see a holistic nutritionist. Her recommendations would help for a while, and then I would go right back to bloat and digestive issues. I then started seeing a gastroenterologist, and finally, an integrative physician. I've had a stool test, an MRI, a SIBO test, food intolerance testing, and an upper endoscopy. Luckily, nothing groundbreaking has shown up. But also, unfortunately, nothing difinitive has show up. I have gut disbiosis, slight stomach erosion (acid reflux?), problems detoxing estrogen, digesting fat, and gluten intolerance. I've been on countless supplements and medium-super restrictive diets, many of which work for a while, and then stop. I LOVE to eat, and these diets near kill me. Not really, obviously, but I struggle.

At the end of the day, I seem to have leaky gut and IBS, the latter of which is more of an umbrella term than anything else. I'm finding myelf intolerant to more and more foods. A low FODMAP diet helps, sometimes, but is hard to follow because it worsens the constipation. I'm beyond the point where my (likely) stress-induced issues are causing me a ton of stress.

Breathe. Observe the irony and move on.

My story isn't uncommon. A lot of people try for years and years to solve gut issues. What works for one person, unfortunately, does not work for another. So I keep trying. Some days are better than others.

You know it's bad when I'm unbuttoned and taking a picture in a public bathroom.

It is a lesson in patience and persistence.

Summer stress, mosaic tiles, and time

It's no surprise that I struggle with time and work/life balance. I "suffer" from loving both my family and my job, and always wanting to be two places at once. I fear that I'm not giving either my full attention. For the second summer in a row, I realize that I have been hyper-anxious. Like, the kind of anxious where even when I'm not stressed out, I have anxious stomach. Last summer, the source of anxiety was clearer. I saw it as my last push toward tenure, and had two papers that I needed to get under review. I remember being at Duck, completely stressed out.

Fast forward to this year, and while I have a few more publications under my belt, I'm still anxious. Turns out, I can publish until February and still have it count, so I'm still in furious writing mode. But I'm getting a lot stuff done, so it should be okay, right? 

Wrong.

While I'm definitely having trouble sticking to a schedule and getting stuff done, I'm in much better shape than last year. Why anxious belly? We're doing a lot of fun stuff as a family, more than in the last few years, so why am I so stressed?

I think summer stresses me out!

It is my favorite season -- long days, warmth, no ice or snow removal. But there are so many competing expectations, I don't know how to handle them! Summer cries fun. That's a lot of pressure! And I looove fun outings, and haaate to be left out. So, if the family is having fun, I want to be involved. So I push my work aside "just this one time" and join the fun, and before I know it, I didn't get my work done. Or I do get it done, but I feel like I should be doing more.

I think I also like routine.

I've always know that I like structure, but now I know why. I need the forced working time of the school day, both mine and the kids. It takes the pressure off of having to choose between work and kids.

Plus, I love school.

This article is a great reminder that we have more time than we think. Thinking of time as movable mosaic tiles, and conceptualizing productivity in weeks rather than days, is a really helpful way to find pockets of time.
(I try to accomplish this by getting up early, but that is hard to do when Miles is snuggled up next to me.) When I think about things this way, I'm actually doing okay.

No resolutions here, just some realizations. 

Proof that a) I know how to have fun, and b) that we have done so this summer:

Yes, this is work. And yes, I think it's fun.

Focus on Miles

This guy gets a lot of attention. He is the baby of the family, and he wears it well. But recently I realized that while he gets a lot of attention, much of what we do isn't for him. Rather, he is along for the ride. I think that is classic third (or second or fourth) child syndrome -- living in the car on the way to activities for the older kids. And because he is so little, I fell into the trap of thinking that it wasn't that big of a deal and that there wasn't much for him to do, anyway.

But lately, I've been trying to do more just for him. It started when I realized he was behind with speech. We joined a music class, and he seemed to like it while it lasted.  But what he really loves is playing with other kids. Like, cries when we drive past church instead of turning in b/c he loves  playing with the other kids there so much. Luckily, we have been able to have playdates with his cousin Harry, and he has really flourished. He is talking more, and sort of learning to share. Seeing him light up when he sees Harry is the sweetest thing. We have also had a few playdates with church friends, which has been great.

One of the biggies was the playground. Because of mine and Tim's work schedules, I am often home alone with the kids. So either everyone goes to the playground, or nobody does. So nobody does. But lately, I've been finding pockets of time, when the kids are at taekwondo or basketball, when he can play. Seeing how much he loves it makes me feel guilty that I haven't taken him more.

This bub is the most amazing little guy. I love him so much! With the needs and demands of the older two, it is so easy to assume that he is fine with tagging along. While his *adventurous spirit* guarantees he won't [can't] be ignored, I want to make sure that we continue to create opportunities just for him.

 

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#makingwinternotsuck

It's all about the attitude, right?

I'm trying. I really am. But I hate the winter. And the snow that is expected over the next 48 hours is a perfect example of why.

(image from David Curren FB feed)

Every time it ices/gets windy/snows heavily, we lose power. The first time, Miles ended up in the hospital because his temperature dropped too low. The next time, we ended up with the norovirus (although that was only 50% bad, b/c we also had fun times staying with Beth, who graciously hosted us while we were without power). So my apprehension is high, as I anticipate losing power for a couple of days. I'm trying to soak up the last few hours of power  by procrastinating on the Internet getting work done.

That said, I have been doing better than usual in not getting into a winter funk. Making sure that I have hat/gloves/scarves before I leave the house has helped a lot. Homemade lattes in the afternoon have also been a bonus. Not having to check the weather in West Chester to see if Tim will have to go to work even if it is storming here has been huge. To that end, having Tim home for more movie days and nights, and topping them off with a beer, has been a nice change. We have been introducing the kids to classics, like Back to the Future. Also, the fact that it is already light after 5 o'clock has probably helped most of all.

But truly, this snow is going to test my resolve. Two things that will help: 1) Tim doesn't have to go to work if he can't/doesn't want to. 2) If we lose power, there is a good chance the karate school will have power since it is in a strip mall. At least we have a secondary place to hang out, as long as we can get there.

Meanwhile, the kids are embracing the snow. Oli was DEVASTATED when he woke up to see that there was school today. I should have taken a picture, but it would have been cruel.

Here's hoping it doesn't suck!