One Heck of a Week (Medically Speaking)

As of this writing, 3 of our kids are on 3 different antibiotics for 3 different conditions.

At the end of last week, I took James to Convenient Care for two very swollen, painful, and oozy big toenails. He was prescribed antibiotics to knock back the infection and given a referral to Podiatry for ingrown toenails. 

Then, this Monday, I took Matthew to Convenient Care for lingering breathing issues, fever, and ear pain: pneumonia, aggravated by asthma. He was prescribed antibiotics for the pneumonia, as well as oral corticosteroids and nebulized albuterol for the asthma. 

A few hours after that, I took Robert to Convenient Care for a different set of symptoms that had been growing steadily worse for 3 days. We're waiting on a lab culture, but in the meantime, the doc prescribed some pretty hefty antibiotics to cover all the bases. 

I can't even begin to add up what this might have cost without health insurance. 

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James and I met with the podiatrist today. The doctor confirmed the diagnosis of two very deep-set ingrown toenails. James started asking questions about the treatment and discovered it involved numbing the skin, injecting an anesthetic, and trimming the side of the nail almost to the bottom. He was having NONE of that. No way. It didn't matter to him that his pain would stop almost instantly after the procedure. He was not swayed by promises of not being able to feel the injection or the trimming. Even when reminded of the immense pain and suffering he experiences every time someone bonks either of his toes, he would not be convinced.

I was very, very angry at James, but there was little I could do to force the issue. 

He's too old/big for us to hold him down the whole time.

He's too terrified of needles to be rational.

It would have taken only 20 minutes to fix this problem forever. Forever! James would rather endure weeks and weeks of continuous pain to avoid that 20 minutes. He's convinced that he can grow back his toenails just fine without surgical help. The doctor advised against that, indicating the antibiotics are working now to control the infection, but if we don't remove the offending nail bits before James finishes this antibiotics regimen, the infection will almost certainly come back. Toe infections can turn nasty pretty quickly, he said. James still would not consent. He wouldn't even let me touch him. 

I used my calmest, firmest voice to tell James that putting off the procedure was not the right thing to do. He buried his face in his hands and started to cry. But he did not yield.

So, we left the doctor's office. Neither one of us had anything more to say. James walked to the car quickly with his head down. I was following several steps behind trying not to cry. 

When James's toenails get nasty again, we'll need to schedule the procedure. I'm hopeful he'll submit to the in-office version with a local anesthetic. If not, we'll have no choice but to schedule an official surgery with an IV drip and an anesthesiologist who can put him to sleep safely. 

Unbelievable. 

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In other medical news, Bobby's intermittent chest pain and regular fatigue continue undiagnosed. His doctor prescribed nitroglycerin tablets as needed to dilate blood vessels. Bobby says they help alleviate the chest pain but they also make him feel weird. 

My new medicine arrived today. It comes in an auto-injector like those epi pens for allergic reactions. Just press and hold until you hear the click. I psyched myself up, "It'll be fine. It's just like any other shot." Then I pressed the button. The needle was exactly what I expected. The medicine itself, however, felt like flaming hot lava swords oozing and expanding slowly into my thigh. It was a much larger volume than I had prepared for, and took far longer to inject than I thought I had in me. Not cool, man. Totally not cool, but I'll take that over a blistering rash any day. And I will. Every 2 weeks.

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And here's the best medical news of all:

Anti-anxiety meds have completely transformed Matthew. Instead of a shrinking, panicky kid with occassional moments of peaceful happiness, we now have a generally happy kid with occasional moments of manageable stress.

Every single day this week, I've heard the other kids do or say something that would normally trigger a panic attack in Matthew. Do you know what happened instead? Matthew laughed at the joke or asked them to stop or kept working on his homework. I just stood there stunned with my mouth wide open. What?! 

Matthew has said things this week that I never thought I'd ever hear from him:

"I'm not done yet, but I can just work on it tomorrow."

"Mom, leave the car door open and back out of the garage slowly so I can run down the sidewalk and take a flying leap into my seat!"

And there are things he hasn't said even once that are just as miraculous:

"Am I going to be late?"

"Will there be rain tonight?"

"I'm really scared and I don't know why."

"I'm really sad and I don't know why."

We've had no paralyzing meltdowns. No profuse apologies or self-shaming following every minor offense he's given. 

He comes up with his OWN plans to overcome obstacles. And he does it intuitively and nonchalantly, without coaching from any of us. 

Like I told Bobby, we've never really had a chance to separate Matthew's anxiety from Matthew's personality. But now, with the anxiety toned down, I finally see this funny, friendly, confident, resilient, resourceful, self-directed and kinda sneaky kid. He's a lot more like James than I originally thought 😉 

I'm declaring it a miracle. I want to thank those who have been praying for us and putting our family on prayer rolls/lists. It's been a crazy couple of months with all sorts of medical and mental issues, but I feel carried. Your prayers have made us more buoyant and capable. Our family is closer to each other, too. We can laugh together again. There's room to breathe. And while we're still in the thick of many things, there is an underlying tone of patience and longsuffering around here. I credit your faith and prayers for these tender mercies. 

Growing Pains

Hi there! It's been a pretty good week. Our family's most recent stressors and struggles have shifted, and several have improved. I'm calling them growing pains. I'll share them in the random order they occur to me:

My rash:

Sooooooo, the biopsy and blood test results came back. It's very unlikely the rash was caused by an allergic reaction to any medication. They found antibodies in my blood that indicate I have a rare autoimmune blistering disorder. My immune system attacks some of the proteins that connect the top layer of skin to the one right below it. It's a condition that usually shows up in folks older than 60. How crazy is that?! Way out of left field. Yes, it's a chronic condition that will need to be managed for the rest of my life. Yes, I'll be susceptible to flare ups and side effects from medications (typically steroids and immunosuppressants). No, it's not life-threatening. No, I'm not terribly concerned about it. Any more. The initial news was a shocker. But now, after some time to get used to the idea, and seeing this rash subside with treatment, I'm feeling okay about it. Just gonna add it to the pot simmering on the back burner. In the meantime, I feel 99% normal. I'm back to exercising, praying and reading scriptures, connecting with friends, laughing with my kids, and feeling more resilient. The 1% that's not quite "back to normal" is the low grade tingling-itchiness that comes and goes, especially in my hands. The feeling itself isn't as bothersome as the reminder that things have changed for me. 

Here's what the rash looked like in all its glory. Imagine this from scalp to fingertips to knees, but not on my face for some reason. It felt like a burning fever, itched like crazy, and peeled like a horrible sunburn. 

One month later, I've got this: skin that flakes and shady splotches where the rash was.

This peeling on my hands reminds me of when I was a child and my hands would peel a couple times a year. Usually spring and fall. 

Matthew's Anxiety:

He's a new kid with this new school. He suddenly has a sense of humor. He excitedly talks about what they did in class that day. He's loved his afterschool science class WITHOUT James. And now he's talking about joining the archery team, even as James shows no interest in it. Seriously, folks, you have no idea how revolutionary this is. Matthew still has anxiety episodes (hoo boy), and bedtime is still hard (better, but still a rough transition for him), and we are still very careful every day about our tone, our word choice, our scheduling pace, and our routines just to keep Matthew on an even emotional keel. That said, he's more delightful and more delighted about life than ever before. That's significant. We met with a provider about the possibility of anti-anxiety meds. She was concerned that his anxiety isn't a constant, underlying fear (nausea, stomachaches, anxious behaviors that draw attention from peers and teachers, trouble staying asleep) that would obviously be improved with medication. His anxiety is strong and over the top, but it's situational. It comes and goes. It's only triggered by specific things. She also noted that his physical/verbal tics and his mild-moderate compulsion to balance sensory inputs are more typical of OCD than anxiety. None of this was new to us, but I feel better having another perspective. She consulted with other psych folks and decided that it would be okay to try a very low dose, entry-level SSRI to see how that affects things. I'm okay with that. 

Bobby's fatigue:

I don't think I've mentioned this on the blog yet. Bobby has recently had some intermittent symptoms that we haven't yet been able to diagnose. He gets episodes of chest tightness, fatigue, and GI upset. One day he'll be fine and going to work, and the next day he'll be too exhausted and crummy-feeling to do much more than the bare minimum. He's had CT scans, blood tests, and a heart stress test. Everything so far has checked out with gold stars and two thumbs up. He gets a temporary heart monitor this week.

James fitting in:

He's done a little better the last couple of weeks. He's had fewer anxious/depressive episodes. His toes are really painful, though. He tends to clip his nails very, very short and apparently gave himself two ingrown toenails. His instinct was to cut the nails even shorter to relieve the pain. It worked the first few times. Poor guy. The only thing to do now is watch for infection and wait for it to grow back out. Not fun. As for school, we're all getting used to doing homework regularly and learning where to look for assignments on Google Classroom. It's a lot more work than his last school, but the more he does it, the more confident he gets that he can do it. He's done several very difficult things this week: talking to a teacher about a late project, studying for a French quiz (the first studying he's EVER done), and buckling down on Saturday to finish his weekend homework. There's so much more to learn in middle school than what you find in textbooks! I'm so proud of him growing in these other ways.

Other bits:

--The garage freezer wasn't keeping the temp low enough and everything was half-thawed by the time I found it. I shifted things around and managed to save it all. 

--Our washing machine was finally getting unreliable enough that we needed to replace it. Getting a new one was easy. Getting it successfully installed was an exercise in patience. The new washer wasn't the same width as the old one (why aren't these things standardized??), so we had to rearrange some things, and replace a couple cabinets. I was able to install the first one on my own, but the 2nd one has me intimidated. How can I possibly line it up straight with the first one??

--Alex got deep into a woodworking project. He was creating a wooden model of a car (sort of) for his German Language teacher. He learned how to use an electric sander, power drill, dremel, and wood putty. 

-- Here is Alex's quilt top:

-- I found a new home for my road bike! I purchased a new one a couple months ago but didn't allow myself to use it until I had re-homed the first. It's hard to resell bikes. There are SO many variables, even after you've picked which type of bike and which size you're looking for. I got supremely lucky that 1) a young woman in the ward was looking to start road cycling, 2) she was my size, and 3) her dad was experienced enough in road cycling to appreciate this bike's potential for his daughter. I was thrilled to give it to them and they were thrilled to get it. Yay!

This Worked...

...for now.

Matthew's paralyzing meltdowns seem to have lessened significantly over the last couple of weeks. He's a totally new kid: confident, funny, kinda snarky in playful ways, and about 50% more resilient to external stressors. That last one is especially important at home. When triggered by a distressing event/topic, Matthew has had smaller, less distressing anxiety episodes that we can talk through before they explode out of control.

One part of this change is clearly school. He finally feels safe! 

Another part of the change stems from something he discovered about himself. Towards the end of one meltdown last week, he recognized that routines were very, very important to his feeling secure and happy. He suggested we adopt a more structured bedtime routine to help him calm down for sleep. 

I raised an eyebrow.

"That sounds like a great idea. Let's try that," I replied. Then asked, "What happens if you're scared or sad during the routine and don't want to finish it?"

*deep breath* "Then remind me of this conversation and I'll finish the routine without complaining."

Well, heck! Sign me up. I immediately set to work on a very specific bedtime routine that addressed the most common problems we had been experiencing. One major trigger for Matthew is feeling rushed. Another big hangup is feeling like he's disappointed you or done something wrong. Even saying the words, "You haven't done anything wrong," suddenly puts the possibility of error into his head and can paralyze him for a short period of time. 

So, we always start on time, but the rest of the times are flexible. The order of the steps is the important part. One thing at a time. And it's very important not to skip any steps if we're a little later than usual or if the adults are feeling done. That's rushing. And that's him feeling like he's let you down. 

I can tell you that it's been in place 1 week and Matthew has managed to fall asleep on his own every night. Before this week, he had me or Bobby in there pretty much every night because he was too scared to fall asleep on his own. 

Even tonight, when a random fit of unnamed anxiety crippled him at 7:30pm (where do these come from?!), he gathered himself together after the worst had passed and we just moved on to the next step on the list. He needed one reminder a little later to give the next-to-last step the full 20 minutes, but fell asleep soon after. 

This has been a miracle. I just wanted to record it here as proof that something has made a difference. For now. Who knows how long it will last, but I'll gladly take it any time. 

The routine:

Recent Pictures

While visiting family in Houston, Erin took the kids to get pedicures. It was a first for James and Matthew, but Alex was an old pro. They got the paraffin wax treatment and everything.  

The massage chair was so large, it pretty much just massaged Matthew's head back and forth. 

The kids and I visited the Houston Space Center. This is us on the shuttle to see the Historic Mission Control room that landed people on the moon.

Um, they were a little more excited about it than this portrays. It was hot, humid, and busy, but a fun adventure all the same. 

This is the first step in making Alex's quilt. It's appropriate that James is holding it up with him because he did about half the work up to this point.

Here, James is using the Dremel to trim a kickstand down to size for a kid's bike we were refurbishing. My goal to refurbish and donate 45 bikes by my 45th birthday was *almost* met. It turns out, the chart I was using to track my progress only had 40 slots. Not 45. So, while I did complete my chart on time, I fell 5 bikes short. Ugh. I guess that means I'm only 40 years old until those last few are finished.

Here's the pool at our rental in Houston. The boys loved hopping in whenever it was convenient for them, playing until they were done, then coming in to change into dry clothes. It was the perfect counterpoint to the other activities with Gma and Gpa and out and about all over Houston.

Another school year begins

Hello! Another school year has begun, and not without its quirks. All four kids are attending new schools:

Alex: both a senior in high school and a brand new community college freshman. We've experienced a number of "firsts" together as we navigate this whole college thing. Crazy. He's taking 3 courses at the high school and 2 courses through Parkland Community College. He is deliriously happy.

Robert: a freshman in high school. He won't tell me anything directly, but I've managed to surmise that he has friends in every class and one of his friends convinced him to join some sort of science club or something. Robert has also started early morning seminary this week.

James: a brand-new sixth grader at Next Generation School. He's figuring out a new class schedule and getting used to several new teachers. This middle school is new to our family (e.g. Alex attended Urbana Middle School and Campus Middle School for Girls, and Robert attended Urbana Middle School), but all the staff are extremely friendly and helpful so far. James is loathe to take on any after school clubs or activities, and he's intensely preoccupied with how/whether he'll fit in academically and socially, but he seems to like all the new independence and privileges that come with middle school life. 

Matthew: a 4th grader at Next Generation School. He's quick to point out that this school is nothing like his experience at Yankee Ridge Elementary. The first thing he said after spending a day with his whole class is, "I heard only ONE cuss word the entire day!" Matthew is also nervous about making friends. He said he doesn't know anyone's names yet, but kids are asking him to play during recess. 

Our trip to Houston at the end of the summer was very nice. Hot and humid, but the company was delightful. Several of us worked with Alex to make him a quilt. James probably put in the most hours. We shopped at HMart, visited the Space Center, and swam in the pool at our rental. I got to go to the temple on my birthday. I was glad to have Mom with me. After we did an endowment session, James and Dad met us in the baptistry. We were baptized and confirmed for some of our ancestors. That was a good use of my birthday day. 

The day we were leaving back to Illinois, I noticed some red bumps on my neck. It looked like a rash, but it didn't itch, so I figured it would go away. 

No such luck. 

A week later, those little bumps had grown into an itchy, swollen rash on my scalp, neck, shoulders, and chest. The symptoms were consistent with an allergic reaction, but I couldn't think of anything I had come in contact with or eaten in the last week that was out of the ordinary. I had started a new prescription a few weeks before, but wouldn't an allergy have shown up before then??

I went to convenient care where they prescribed a round of steroids to tamp down my immune response and hopefully get me back to normal. The doctor didn't think the new prescription was related. She asked about anything else that might have changed. Nothing. Nothing except that medication. Since it was not a necessary medication (anti-fungal to treat toenail fungus), I stopped taking it anyway. The steroids then seemed to help a little, along with ibuprofen, but the rash came back hard once the steroids were done. 

Back at convenient care, more swollen, blistered, peeling, and itchy than ever, now with an angry rash completely covering my chest and back and starting to creep down to my hands and knees, I begged for relief. I almost got teary and said, "Please help me." The doctors were shocked at the extent of it, but with no other symptoms, they were confident I just needed a larger dose of steroids. They injected me with a high dose of steroids and prescribed another stronger, longer round of oral steroids. 

And today, two days later, I'm still miserable. The steroids, benadryl, and ibuprofen don't seem to keep the rash from spreading, but they do prevent blistering (for which I'm very grateful). Patches of the rash that blistered and peeled earlier are less itchy now. So, it feels like it's running its course. I'm drowsy much of the day due to the antihistamines. 

I looked up the prescription antifungal I was using and learned it can remain active in the body up to a month after the last dose. The liver just doesn't metabolize it very quickly. Strangely, that news actually brought me some hope. If the medication is the cause, then this will end. Even if it takes 30 days, this will get better. It's scarier to me imagining that stress or hormones or an autoimmune disorder is the culprit....there's no clear endpoint in sight for those. 

I'm grateful that it hasn't been so bad as to keep me from my motherly duties. The first week of school is an important one. I've been especially concerned about James and Matthew this year. Lately, they've had bouts of sadness and depression. Maybe 4-5 times a week each? They are almost always triggered by something unexpected or unfortunate happening to them, then they wilt under the weight of it all. 

When Matthew notices he's inexplicably sad, he starts to get anxious about being sad. He really, really, really, doesn't like feeling sad. His anxiety about the sadness grows until he's overwhelmed by it and can't think straight. He's not sad anymore at that point, but he's sobbing, rocking himself back and forth in the fetal position, and unable to make decisions. This used to freak me out. A lot. I used to try all sorts of things to pull him out of it. All the extra attention was NOT helpful, by the way. What does seem to help is a calm, listening ear that offers empathy and recognizes his frustration. It's crazy hard not to ask questions or offer solutions. Matthew eventually calms down and finds a solution on his own. He almost always apologizes for losing control and then thanks me for my help. 

When James gets a bout of this sadness, he withdraws. He stops talking, seeks solitude, and looks off into the distance. He wants help changing his mood, but doesn't quite know how to ask for it. If we get a chance to talk privately about it, he can sometimes recognize what's bothering him. Many times, though, he doesn't know exactly why he's suddenly sad. 

James experiences anxiety, too, he starts to shake, rock back and forth, wring his hands, grit his teeth, and writhe on the couch. He can't speak words, but sometimes he cries and whimpers as if he's physically hurt. At first, I thought this was a tantrum response. I ignored it or sent it to another room. That changed nothing. The only thing that seems to help is a calm, listening ear that offers empathy and recognizes his frustration. 

So, I'm trying really hard to be that listening ear for James and Matthew. These episodes never come at convenient times and they take a lot of patience. Both boys are old enough now to detect my frustration, even if my words are kind and patient. 

Let me see what else I can share about the first week of school that may be of interest...

-- Matthew signed up for an after-school enrichment class about science

-- Alex started his Child Psychology course at the college and is thrilled with his textbook. It gives details and cites studies, forcing him to think critically about things, not just memorize them. 

-- James went with all the middle schoolers to a nearby 4H camp for some team building activities. They were tasked with building a 1-person raft that would cross the beach twice without sinking. He had a lot of fun with that one. 

-- Robert continues to tell me nothing. He doesn't like answering my curious questions. I have noticed, however, that his strength training is paying off and that puts him in a good mood. He still mentions every once in a while how lovely it was to have us away in Texas. He and Bobby had full reign of the house and schedule. Everything was so quiet and peaceful.

Okay, that blog post is long enough. Good night!