Spring Break Sickness

Ironically, Teddy got sick again this year exactly a year to the date as he did last year during spring break. Last year, his bout of RSV destroyed our spring break plans, and our spirits to be honest, because we had to cancel our flights and hotels. This year we had no big plans, so his crud only ruined his spring break and mildly messed up our adult plans for work and visits with grandparents. Thankfully, AJ still got 2 sleepovers and 3 visits with friends, plus a super fun escape room camp. I'm glad his fun wasn't hampered by the crud. 

Also, I'm grateful Teddy weathered his weeklong illness with no seizures. He had a pretty toasty fever of 102, and he weathered it overall well. He wasn't so miserable that he was trying to climb out of his skin, no vomiting (which for some odd reason makes him want to strip naked ahead of time?) and no hives. All in all, he handled it extremely well. Sometimes we forget to be grateful for these blessings.

He's the happiest sick kid you can imagine sometimes.

To be fair, it's a bit harder to be grateful when he passes the nastiness to me, and I realize just how miserable he was. It knocked me out of running for a full week (and it's still a wee bit hard to breath), but thankfully I'm on the very tail end of it with just occasional coughs. This allows me to be fully present for the Wisconsin Autism Conference, which is great learning opportunity for me.

With an extremely rare genetic disorder, there's minimal research and resources for PIGN and CDG, though our small community is strong and extremely helpful. With his autism diagnosis last year, it was almost overwhelming the amount of resources and learning opportunities that exist. 

All the Sicknesses

As usual, it's been much longer than intended between posts. To be fair, though, I feel like our household has been ill since mid-November. 

It started with a phone call that Teddy was suspected of pink eye and needed to be picked up from school the Friday before Thanksgiving. That required a visit to the walk-in clinic, of course, to get medication and clearance to go back to school. As an added bonus, we learned he actually had strep throat on top of the pink eye at that visit, so he got prescribed 2 different antibiotics. 

You'd think that would be enough to keep him healthy, but nope. We finalized our Thanksgiving plans at 6 p.m. Wednesday night before Thanksgiving, only to have Teddy start vomiting at 8 p.m. After 3 to 4 projectile vomiting sessions, with him completely miserable, Dave took him to the emergency room at 9 p.m. They celebrated (umm, probably wrong word choice) the start of Thanksgiving in the ER, getting home after 1 a.m. after getting fluids, IV anti-nausea meds after throwing up the oral ones and IV keppra. 

AJ and I managed to still visit my folks for Thanksgiving, while Dave and Teddy stayed home recovering. Seriously, who gets a 3rd illness while he's being treated for 2 other ones?!?!

That recovery didn't last long, though. We had perhaps a week where Teddy was feeling better before the respiratory illness started. After watching him lay on the floor just staring at us putting up the Christmas tree without causing any trouble or "helping" at all, we knew he was definitely not well. After seeing a temp over 100, along with the lethargy, we headed back to the walk-in clinic for visit #2 within 2 weeks or so. 

That visit prompted visit #2 to the ER because we got sent there instead due to his high fever, low oxygen, high pulse and high blood pressure. His temp was over 102 by the time we were in the ER (even after having Tylenol 30 to 60 minutes earlier), and he was miserable. They checked for all the viral illnesses (flu, RSV and COVID) along with a chest x-ray to look for pneumonia or bronchitis given the persistent string of illnesses. All that came back negative, so it was some other virus kicking his butt.

Walk-in and ER visits #2.

Thankfully he was through the worst of that in just a couple days, though I swear that cough and crud has lasted for more than 2 weeks still (with the rest of us getting some lesser variant). While we're sick of being sick, one of the biggest blessings is that despite all the illnesses, he had no seizures. That's tremendous, considering strep throat has kicked off wicked seizures, as has multiple illnesses at the same time. 

I'm also grateful that the time and effort I've put into therapy this year (particularly EMRD to process his 2 worst seizure episodes) really has made a difference. All these illnesses were the perfect test to see if my anxiety when he's ill improved, and it was a remarkable difference. While it's still no fun with sickness, especially with a non-verbal child who can't tell you how he feels and what hurts, the constant worry about seizures and worst-case scenarios wasn't there. 

So here's to hoping to finish the end of the year healthy and that the worst of our winter illnesses are behind us!

Hives and Being Heard

When Teddy had his skin biopsy done earlier this week, we noticed he was a bit off earlier in the day. As Teddy is non-verbal and has a high pain tolerance, it's tough to know exactly what is going on and whether little things like being more mopey in the morning are a sign of something wrong or just a poor night of sleep. We took his temperature, which was normal, and continued on with our day. He seemed to be acting fairly normal throughout the morning, and then we had his skin biopsy.

As I mentioned, he fought less than I expected. Normally he hates anything medical. He did resist laying down and had to be held (by 3 of us), but he almost immediately stopped fighting. That might be typical for most kids once the numbing injection sets in, but Teddy hates being held in place. It was really odd that he didn't resist the entire time, but I was grateful for how well it went.

But as soon as we got home, his behavior continued to be off. He came up to me multiple times to snuggle or to hug me and be held. Now, Teddy likes close contact and physically touching people, but that's more to direct us where to be not to get snuggles and loving. 

Then I had to hop on a meeting for work, and Teddy left me alone the entire time. That's when I decided we needed to visit the walk-in clinic to get him checked out. Primary symptoms: extra snuggles, not resisting a skin biopsy as much as expected and not getting into everything ... really great to explain to a doctor, right?

But while I was in my meeting, he started breaking out in hives. So we headed right to the walk-in clinic. I walked through everything with the front desk and the nurse. As I explained things to the doctor, he said that it's really hard to determine the cause of hives. He was focused on the skin biopsy and a possible reaction to the numbing medication, and he seemed more ready to just treat the hives than look for any underlying cause we could find. He did check Teddy's lungs (as Teddy always sounds wheezy.) When I asked him to look him over and check his ears for example, his response was that he didn't know what he'd see in the ears that would cause hives, but he did check anyways. 

This was early on, and it still looked wicked.

It's honestly the first time in a long time that I haven't felt heard when I brought Teddy in for concerns. He didn't even check his throat, mouth or nose for any signs of illness. While I realize hives are nearly impossible to diagnose the root cause of without allergy testing (and that's still not a certainty), it's also impossible to know if Teddy had a fever that was masked by the medication following his biopsy ... or a sore throat ... or a headache.

So we got sent home with steroids, and Teddy continued to worsen. The hives spread over his entire body until he no longer had splotches and dots but instead his entire body was red and hot to the touch. He rolled around trying to find relief from the itching or pain. He scratched himself. He was miserable. 

We got a second dose of steroids in him, and he finally settled onto Dave and fell asleep in misery for a nap. Then he woke up from that and promptly puked all over Dave. 

Let's just say it was a really long afternoon and evening. Thankfully he was feeling a bit better in the morning and was no longer a giant hive although he was still itchy. Our best guess is it was some virus that caused viral hives, which he's had once before.

I certainly hope he doesn't have these again anytime soon.

Well, that was a Fluke ...

Nope, it was just the flu. And by just, I mean, influenza A kicked Teddy's butt. And then Dave's butt. And then AJ's butt. 

Gosh, this feels a lot like my post about COVID last month where I said that I was hoping I wouldn't catch it but felt the impending doom.

It's always tough to know what's wrong with Teddy, whether he's hungry, crabby or not feeling well. I got home late from work last week Wednesday, and he switched from happy to mopey instantly. Neither Bri or I could figure out what was up, and he even went upstairs to his bedroom alone while we ate a treat, which is unheard of. When I went upstairs to give him a bath and actually put him to bed, he snuggled into me and then promptly covered me in vomit. *Ugh*

The poor kid vomited a total of 4 times before morning, developed a fever and started coughing overnight. My gut told me it was the flu (since he just had COVID), and my gut was right. 

He requested a bath this weekend and made all the bubbles!

Given that Dave spent the night with him (and every night since then), it's not surprising that he went down over the weekend. And AJ and Teddy have no personal space boundaries, so both Dave and AJ tested positive Sunday morning. 

Thankfully Teddy was well enough to return to school today, and he was very excited for that! I'm also very grateful that Sigrid was willing to mask up and watch the boys a few hours Saturday afternoon while Dave and I took in Aladdin in masks since we had tickets (and I'm so glad we made it because it was a fabulous show!). 

One would think that between COVID last month and the flu this month, one would think we might get to stay healthy through the holidays. But I won't curse us, and I'll just keep washing my hands and waiting until well past everyone is contagious in my house before I come within 6 feet of them without a mask. ;-)

Why We Worry

Life with Teddy is a roller coaster, filled with incredibly joyful moments and moments that my brain blocks out to prevent me from the trauma. (I wish I was kidding, but I'm not really.) We've spent the past 2 years living cautiously because of COVID. The reality is that any illness can trigger seizures for Teddy, and seizures terrify us. 

I realize both Dave and I have anxiety regarding Teddy's health, largely due to the fact that we've seen Teddy experience terrible seizures, intubation, hospital rides and ICU stays. We've seen how worried the medical professionals were ... and realized that worst-case scenarios could exist. Dave and I had a conversation the other month discussing that illnesses could lead to seizures and hospital stays, and then Dave tossed in "death." It was somewhat of a lightbulb moment because I never realized that Dave goes to the ultimate worst-case scenario every time Teddy gets ill. 

To paint a picture of what illnesses look like for us, Teddy spiked a fever 2 nights ago in the middle of the night. He was restless for a couple hours and woke up at 3 a.m. absolutely miserable. That ended our sleep for the night, as we were getting him medicine, snuggling him and worrying, especially because we were 3 hours from home. Teddy fell back asleep for a bit until 5 a.m. when he woke up still miserable. By 6 a.m. Dave and Teddy were on the road home, and by noon he was diagnosed with double ear infections. 

He's so miserable and pathetic.

It may seem like overkill to take Teddy in to the doctor for essentially a fever and a few occasional coughs on the same day he started with symptoms. Yet, he's non-verbal, so he can't tell us what he's feeling. We never know the full picture of what's going on, so at least a doctor visit can rule out some things or give us answers. 

This time we got lucky in the sense that we got answers: double ear infections. We were able to get antibiotics into him the first day. We rotated Ibuprofin and Tylenol every 3 hours, except when he was sleeping.

Dave slept in Teddy's room to keep an eye on him, and Teddy started getting restless again in the middle of the night. By 3 a.m. he was up with both of us in his room, snuggling him, laying on either side with him in the middle just moaning and whimpering with us worrying and waiting for him to feel better with the medicine. And that was the end of restful sleep for any of us.

That's just a snapshot - a cold isn't just a cold. It's a ball of nerves and worry until Teddy's on the mend. An ear infection is sleepless nights and worry. Fortunately things are looking up this time, as Teddy finally perked up near the end of today asking to go outside and actually smiling and laughing. 

This smile gives us hope and a bit of peace.

Witch Doctor Update

I referenced a follow-up visit to the witch doctor in my last post. Unfortunately that appointment was rescheduled because our boys both came down with sore throats, fevers and runny noses. So instead we did home COVID tests that were negative and took Teddy to the pediatrician instead of podiatrist to check for any other obvious, treatable illnesses. 

Fortunately it was just one of the many viruses floating around, and the fever didn't cause any seizures for Teddy for the couple days he experienced it. It did, manage, however to give us several solid days of worry and anxiety. As Dave and I reflected on it, I said that any virus that causes a fever causes us this fear of seizures. Dave's addition was " ... and dying." Dave worries more than I do, perhaps because I don't play out the worst case scenario and just worry about the first bad thing (seizures). 

This hit me, though, because the reality is that pre-COVID, we were always concerned about influenza. For us, a virus isn't just a couple days of a sick child. It's always that fear of something worse: seizures, ER trips, hospitalizations or death (apparently for Dave). Now, worrying doesn't change or prevent any of these from happening, so I know we both need to work on our coping skills. But we do focus on what we can control, which is trying to minimize some of that risk for Teddy.

Amazingly, the adults in the household avoided this virus. That is truly remarkable given the amount of snot we wiped off Teddy's face ... and our clothes. Disgusting! I'm going to attribute it to copious amounts of water loaded with vitamin C and other immune boosters, along with eating whole cloves of raw garlic daily for several days. Sheer competitiveness caused me to chew the clove the first day before switching to the much more palatable method of cutting it into small pieces and swallowing it like a pill.

And what's the point of all this randomness? We all were healthy enough to go on our planned vacation, which I'll share about in my upcoming posts!

Oh, and Teddy went back to the podiatrist yesterday, and she confirmed that his wart was completely gone! 

I Remember When 2 a.m. Was Bedtime ...

 ... a long, long time ago the semester I lived in Spain. Even when I returned stateside, I had no desire to be awake at 2 a.m. That hasn't changed in all the years since college as I firmly believe 2 a.m. is meant for sleeping.

Teddy, on the other hand, determined that 2 a.m. was the perfect time to wake up Sunday morning. We were at the land, and he began stirring and moving around. He was sleeping on the bed next to Dave, and I was on the couch.  I checked my watch and realized it was 2 a.m. and hoped he'd settle back to sleep quickly. Then I heard him cough and realized we had forgotten to bring his rescue medication for seizures down to the land. Immediately, my mind was wide awake piecing together that obviously since our childcare provider was being tested for COVID that Teddy was probably sick and that's why he woke up, he had a fever and would start seizing and determining which one of us would call 911 to get an ambulance to meet the other en route to the hospital 20 minutes away. All because of a single cough. I spent the next 30 minutes worrying about all of this for two reasons:

1. When your child has taken two ambulance rides due to seizures (one of them intubated), the fear of illness and the associated seizures is very real. We spend every winter on heightened alert because of flu season. We worry that when Teddy wakes up in the middle of the night that its because he's ill and has a fever. Trust me, there have been too many times he's woken up in the night for us to discover her with temps over 100. When you add in potential COVID exposure, your mind goes to bad places, no matter how much you rationalize that potential exposure as minimal. With all these fears, the obvious thing would be to check him for a temperature immediately, right?
2. Except for the fact that when Teddy wakes up in the middle of the night, he will not settle back down if you acknowledge you're awake. Once he realizes you're awake, then he wants to play. Or wake up everyone in the room. Or go for tractor rides. Or do anything but sleep.

At 2:30, I heard Dave give up and acknowledge he was awake. Then I spent the next 30 minutes trying to tell myself I could fall back asleep because Dave would check Teddy for signs of illness. Dave attempted to get Teddy to snuggle back to sleep to no avail. 

So at 3 a.m. Teddy and I headed out to the Tahoe. That might seem odd, but middle of the night drives are fairly common to get Teddy asleep or to occupy him while others are trying to sleep. We drove (often at idle speed) around the land, down the road to the county park and back around the land. After an hour of driving, I was hoping Teddy might be tired enough to sleep because I certainly was. I knew by the occasional giggle that he probably wasn't, but it was worth an attempt.

After 10-15 minutes of blatant disregard for sleep, Dave took Teddy back to the Tahoe. He put in a movie for Teddy to watch, reclined the seat and attempted to get some sleep. (I had offered to go put a movie on for Teddy in the vehicle, but I planned to lay down a seat, bring a sleeping bag and pillow and snooze with Teddy securely strapped in his carseat. (It's one of the few ways that Teddy is truly contained, so it would be safe to rest.) I got to go back to bed for a few hours, until I woke up at 7 a.m. and texted Dave that I could take over (out of a sense of obligation, not because I was well rested). He brought Teddy into our garage, and Dave got a couple more hours of sleep while the boys and I ate breakfast, went for ranger rides and even a short tractor ride. 

Teddy fared remarkably well that day, only a few minor meltdowns and some whining on the drive home. He was exhausted but had no desire to sleep until he finally crashed at 7:30 p.m. How that child can manage to be awake from 2 a.m. to 7:30 p.m. with no caffeine is beyond me ... heck, me being awake as much of that time as I was even with caffeine is beyond me. 

2 a.m. to 2 p.m. and going strong. 

Wearing a Mask Isn't a Personal Decision

If you strongly believe that it's your right to choose whether to wear a mask during the coronavirus pandemic, then you might not want to read this. On the other hand, it might a good idea if you could read it with an open mind to understand our perspective.

Teddy cannot wear a mask. He simply does not comprehend that it needs to stay on his face and removes it the same way he does every pair of sunglasses or hat that we place on his head. It might stay on for a period of time, anywhere from literally a second to 30 or more minutes depending on the hat and whether it has a string for him to chew on. See, Teddy has extreme sensory needs that include the constant need to chew on something, so something covering his mouth is only going to end up in his mouth. And a potentially contaminated mask does not belong in his mouth. Or shoved onto my head, which is also realistic because he likes to place the items he removes on other people.

Teddy also took an ambulance ride to the ER due to strep throat. He had another ambulance ride and ICU stay for an ear infection and stomach bug. Any illness, particularly one that causes a fever, can trigger seizures. And sometimes, those damn seizures won't stop. If strep throat sends him to the hospital, a reasonable person can understand why we're extremely concerned about the risk COVID poses to him. We like to pretend we don't have a medically fragile child, but the reality is that he fits that label.

So where does that leave us? At home.

Pretty much, that's the only safe place for Teddy to play, which means that's the only safe place for AJ to play. We even have to come inside when our neighbors are playing outside when Teddy doesn't understand we cannot play with or near them. We've made a few trips to parks when no one else is there, with the plan to leave as soon as someone else arrives, hand sanitizer on hand for immediately afterward and 1:1 supervision to keep Teddy's mouth off everything. We've done bike rides and runs, but only in places where there's plenty of room to distance and/or limited people.

Teddy hasn't been in a store in 4 months. Before the pandemic, he was routinely in stores at least once a week because we took him along to run errands because he loves people (and trips to stores greatly helped improve his moods when he was crabby and driving us nuts). What would it take for Teddy to be able to go into the store again? Everyone who can wear a mask to wear a mask.

You see, we understand that for masks to be fully effective, both people in a situation need to wear them. Only one person wearing a mask doesn't offer full protection. But, the best we can hope for with Teddy is partial protection, and unfortunately we have to settle for that. Because we can't isolate him at home. He needs multiple therapies to help work on the skills we take for granted: communicating, dressing ourselves, walking and so much more. He needs to go to appointments for adaptive equipment like AFOs, braces that help him be so much steadier on his feet and prevent him from snapping his ankles with his bendiness.

This graphic shared by Philadelphia Public Health sums it up pretty darn well.

The issue of a mask comes to the forefront at these appointments. At his therapy appointments, his therapists all wear masks, most often the respirator masks, and sometimes eye protection. His physical therapist informed me today that she fields a lot of questions from even her family on why she wears a mask everywhere. She said I do it to protect my kids. I know the population I work with is vulnerable. This came up because I warned her that the person who does Teddy's braces doesn't believe in wearing masks, just as a heads up in case she refers other medically fragile families there.

When we went in June for the first fitting appointment, I was surprised and uncomfortable that no one was wearing masks. For the second appointment, Dave called to request the person who worked directly with Teddy wear a mask. He did, but he also shared his thoughts on the virus being similar to the flu and how masks aren't necessary with our childcare provider. We made the same request for Teddy's appointment yesterday, and again our childcare provider took Teddy to the appointment. She and AJ wore masks ... and earned another earful. This time it was questions about where was Teddy's mask and why Teddy wasn't wearing a mask. She simply said Teddy cannot wear one due to sensory issues, which this person should know because he's worked with Teddy for 6 years. She shouldn't have to explain or defend why we're requesting a medical professional to wear a mask when interacting with our son.

Wearing a mask isn't your personal decision, any more than the decision to drive intoxicated is your personal decision. Personal decisions are things that impact you: whether you get a tattoo, dye your hair lime green, eat ice cream for dinner or even wear your seatbelt. They impact you and your health, so they still impact others who care about you if you make negative choices that lead to becoming ill, injured or deceased. But they don't pose the risk to others and they don't take away the ability of others to be in our community.

It's been said by so many in different ways. Wearing a mask isn't about you, although it certainly keeps you safer. Wearing a mask protects others, especially those like Teddy who have the double burden of medical fragility and the inability to physically wear a mask.

I'm not asking for sympathy for our situation. I'm asking for a bit of empathy, which means you'll wear a mask in public. And it means I won't have to make special requests for you to wear a mask to interact with my son and then get the fifth degree.

No Field Trip Fun

One of the worst things that can happen to most children is to be sick the day of a field trip (or holiday party). That's exactly what happened to Teddy Friday. He woke up with a 102.4 fever, so he absolutely wasn't going to school. That meant he missed an all-day field trip, riding his beloved yellow buses, to play soccer, swim and ice skate at the YMCA. As much as I was dreading the physical exertion of chasing him all day as his chaperone, I was looking forward to all the smiles and joy because it was a perfect field trip for Teddy all based around play and not about sitting to learn.

But, the silver lining to the cloud that turned out to be strep throat was that Teddy didn't realize he was missing out on anything because he was too busy living in the moment. He got a whole day with mom to play, destroying our house and dancing to awesome music. (He typically doesn't get the memo that when he's sick he should take it easy, nap and rest. It often barely slows him down, especially when he's medicated with Tylenol and Ibuprofen. And with that fever, you can bet he was on a rotating cycle.)

Such a happy kid, even with strep throat. 

So, although he wasn't feeling the best, he still made the most of his day. That's the great thing about Teddy is that he lives in the moment. It doesn't matter what he's missing because there's usually something great about the exact moment that is happening. Unless you don't give him that banana that he really wants because that is not a good moment. I swear I've never seen anyone look so utterly defeated and wail so loudly that they couldn't eat a second banana.

I challenge you to challenge your inner Ted. Find the joy in your moments today. It's there for you to appreciate ... unless you really wanted that second banana, too, and someone stopped you.

He was enjoying snuggles with Dad today. Or trying to steal the phone.

Life with Teddy is Scary

Remember when I said I'd take puke over fevers any day? I didn't need to test that theory again so soon.

Last night was a normal night, although Teddy didn't settle down to sleep on his own. That's not uncommon, so Dave went to snuggle by him. When he came down, he informed me that he changed a really liquid diaper (hence blankets and a giant stuffed elephant going in the laundry). Teddy was asleep, though, so we figured it was a one-time thing ... until 2 hours later when Teddy was crying. I had already been asleep for a about 20 minutes (something about getting up at 4:10 a.m. to go running), but I crawled out of bed to assist Dave with another liquid poop diaper.

We ended up with poop down Teddy's legs from pulling down his pants, so we decided a shower was needed. I was concerned that would wake him up and make it hard for him to settle back down. How right I was for the wrong reasons. As Dave showered Teddy and I cleaned his room, Teddy started scratching his neck. By the time he came out of the shower, his arms were bright red, and he was developing hives.

This is the aftermath of the hives on his neck, all the scratches.

That was enough for us to determine the ER was where Teddy needed to be, so Dave got him dressed while I threw things in a diaper bag. They were on their way, and I pretended to try to sleep. In reality, I was texting Dave for updates and worrying. Teddy had more diarrhea, hives head to toe and lips swelling, so we were glad we took him to the ER when we did. When Teddy puked, Dave pulled the trigger to call his parents at 11 p.m. when they were sound asleep to get someone down to our house, so I could head to the hospital as well.

The last time Dave and I were both at the Oshkosh ER with Teddy, we ended up inpatient at the ICU in Milwaukee. So, just to be safe, I threw together several changes of clothes, deodorant and toothbrushes. As I did that, I realized this is the difference between our lives and parents of typical children. If it were AJ instead of Teddy, we'd have given him Benadryl and monitored him at home. Because it was Teddy, we went to the ER, both of us terrified of seizures and the endless string of what if questions.

This photo captures how wonderful Dave is as a parent.

When Dave's dad came down, I headed to the ER shortly before midnight. I made it there for the PA's report where we determined that Benadryl would be sufficient rather than adding steroids. The best guess was a stomach virus, complete with viral hives. (We never had experienced those, so they were rather scary with how quickly they developed and overtook his body.) We headed home, where Dave probably didn't sleep all night as he laid awake worrying about Teddy.

Me, I knew I was the one staying home with Teddy all day, so I got the 5 hours of sleep I could. Teddy had a few more diarrhea diapers this morning, but by 8 a.m. he was pretty much his usual self. As I told both my parents and my in-laws, it looked like a tornado went through our house ... a few times. That's a good sign because that means Teddy is feeling better.

Fingers crossed that we all get a lot more sleep tonight. Even when Teddy's up half the night sick, he still doesn't believe in the restorative power of naps as you can see below.

Would You Rather?

In the game of parenting, I'm guessing most parents would pick a mild fever over vomit. I'll take vomit any day as long as there's no fever. See, illnesses in general, particularly those accompanied by a fever put Teddy at a greater risk for seizures. Anything that weakens his immune system can also weaken his threshold for seizures. We see this most often with fevers, even mild ones.

**Disclaimer** Stop reading if you have a weak stomach. Don't read this if you're eating. Don't read this if you're about to eat. Feel free to continue reading if none of those apply. We're taking a ride on the vomit comet.

So when my mother-in-law informed me Friday night that Teddy puked, I wasn't overly concerned. (I was at work finishing a critical project, which is why I had left Teddy at my in-laws last minute after his therapy appointment.) When she said he puked his entire supper, I was a bit more concerned because that wouldn't be explained by eating too fast or playing too hard to cause him to throw up just a bit. When I had to drive home alone with Teddy in the dark along the same stretch of highway where he seized non-stop and ended up in the ICU, I was even more worried. I didn't know if his crabbiness was tiredness or because he wasn't feeling well, but he made it home with no issues.

However, as soon as he stepped inside the house, I could tell he was going to puke. And this was when I realized there's no good way to help Teddy puke, except for perhaps a bucket, which we didn't have. Poor kid. As a child, I always puked in the toilet, which I thought was gross, but sometimes the grossness of it helped me puke and then feel better. AJ pukes in the toilet, when there's enough warning of course. I'm pretty sure if we tried to help Teddy puke in the toilet, he'd lick it or stick his head in the water. So he puked partially in the sink, partially on the floor, partially on the brand new roll of toilet paper and hey, some made it on the toilet for good measure.

He was back to normal today, so the just-in-case bucket was a hat.

Then I had Dave gagging and informing me that he had to leave or he'd puke. AJ sighed and said, "I'll help clean up the puke." I reassured AJ I didn't need him to help clean up the puke, but I would appreciate a few minutes to clean it up before he showed me his prize from school that day. (I'm pretty sure I still had puke on my shirt when I saw his prize.)

We were all pretty concerned, but Teddy managed with no fever, two bouts of puking and a few hours of miserableness. As gross as it is, I'll take cleaning up half-digested hot dogs and banana chunks from a sink over a fever. Yes, my mother-in-law lied. Teddy didn't puke up his entire supper at his house. I can vouch for that. 

Crazy Couple Weeks

Normally I try to post here once or twice a week, but I haven't posted since the awesomeness that was World CDG Awareness Day on May 16. Sometimes, life just gets busy.

For example, Dave left for a work trip on the afternoon of May 19. That's not out of the norm, and life typically trucks on with our usual routines with a bit more stress in the evenings when Dave would normally be home helping. I even had my good friend and her family over to celebrate our birthdays because that would make the transition of Dave leaving so much easier and keep the kiddos occupied until bedtime. Brilliant, right?

When I was serving ice cream for dessert, I noticed the ice cream was a bit soft. I made a mental note to check the freezer later in the evening because we'd been in and out of it quite a bit. Unfortunately I didn't remember that mental note until I was tucked into bed, ready to fall asleep. So I climbed out of bed, came downstairs, checked the freezer and groaned. Our freezer (and refrigerator) has been dancing with death for the last year almost. At least, that's how I would describe it because I don't think it's normal for your refrigerator to sound like a helicopter taking off in your kitchen. But it didn't die until the night of my birthday. So I spent an hour emptying the fridge and freezer instead of sleeping. On the bright side, I sure boosted my steps for the day with all those trips down to the fridge and freezer in the basement.

Teddy was concerned the fridge was empty. He decided to fill it with snacks.

Snuggled into bed ... again ... and slept until I woke up to Teddy crying at 2:30 a.m. Sometimes he'll whimper and cry a bit and fall back asleep, but my intuition forced me out of bed to check on him. Sure enough, the poor kiddo had a fever. So I got him medicine and cuddled him from 2:30 until 4:30 with neither of us getting any real rest. Finally I left his room, so he could settle down, and I could snag another hour of sleep before I was on the clock for the day.

That meant my week started with me staying home with a sick Teddy, cramming in as much work as I could once he went to bed that night.

Teddy loved shopping for a new fridge. He thought we were getting a lawn mower each visit. 

Fast forward to this Memorial Day weekend. We had a great time up north for a night and managed to get our garden planted before the rain Monday. But Tuesday morning at 4:15 Teddy was up again whimpering and crying. Again, my intuition encouraged me out of bed to check on him, and he was spiking a fever.

With two fevers in a week, we called the doctor's office. After talking to the nurse, he got an appointment for Tuesday afternoon. He spent the day living the dream with Dave home for the day. He loved all the attention from Dave and was in a good mood all day, not acting under the weather. (That's the norm for Teddy. He has to be pretty miserable or tired before he concedes that he might need to snuggle for more than a minute.)

Doesn't he look miserable?

It turns out that Teddy has an ear infection and sinus infection. You'd never guess it from how he's acting, but he's on antibiotics to hopefully get him healthy again.

And that, my friends, is why it's been so quiet on the blog lately. It just hasn't been that quiet at our house.

We Ventured on Vacation

Our family is known for its adventurous vacations, road tripping across our country to explore our national parks. This year's vacations look a bit different because we're extremely fortunate to experience Disney this summer with Dave's family. That's going to be far more adventurous for us than any of our previous trips. 

We also had a reason to be in Tennessee a few weeks ago to spread my grandfather's ashes on his birthday, so we decided to pull the kids from school for a week to enjoy and explore the areas. We headed down past Chicago on a Thursday night and made it down to Tennessee by late Friday. I was amazed at how well the children rode the entire trip. We had barely any tears through the entire trip ... at least due to car rides. 

This was the first time the boys met my grandmother (and much of the family on my mom's side). They were welcomed with open arms, and Teddy couldn't have been more excited to see a lawn mower sitting in the yard. My aunt alternated her time between giving Teddy rides on the mower and playing games with AJ. Both boys adored her, and I appreciated the chance to visit with some of my family while they were playing with her. 

Teddy spent much of his time on this lawn mower, along with anyone he could grab.

Saturday and Sunday were family-filled days with perfect weather. It was really neat to spend time with family that I rarely see and actually get to know one of my cousins. (AJ was completely smitten with her and describes her as my really nice cousin who likes cats a lot.) 

Teddy snuggling for a moment with his great grandma under the supervision of his uncle.

We had talked about having my parents keep the boys for one day, and I even got them to agree to taking them overnight. However, that overnight was something that sounded good in theory but not in real life when Teddy doesn't sleep on vacation. So, we kept Teddy for the overnight with plans to meet in the morning to drop off the boys. That didn't happen because we spent 2 hours in the middle of the night up with a feverish Teddy working to get him soothed, medicated, monitored and back to sleep ... while looking up walk-in clinics and the nearest ER just in case. That sickness threw a wrinkle into our trip, but we managed to avoid anything worse than fever, constant running nose, coughs and less than $50 between the doctor visit, pharmacy and over-the-counter meds. 

So, Dave and I didn't get our day away from the boys because we wanted to keep a close eye on Teddy. We did that by hiking up the side of a mountain to a waterfall. It was a fantastic hike, despite the rain all the way down. We met up that evening for dinner with my family at one of our very few restaurant meals. Teddy does not sit well at restaurants unless he's really hungry, so it's just easier to eat snacks while driving and piece together meals in hotel rooms. Trust me, I'm a pro at making mac n cheese, quesadillas, chips and cheese and even whipped up some masterpiece burritos this trip. 

We spent Tuesday exploring Great Smoky Mountains as well, getting both boys their Junior Ranger badges. Before we left Wednesday, I ran to the accessible trail head while Dave and the boys ate breakfast. They brought me breakfast, and we enjoyed a family walk at a leisurely pace, stopping to enjoy the snails that we finally spotted. 

I love how much AJ loves Teddy. He's such a helper. 

Then we headed to Mammoth Caves. We spent some time exploring the land above the caves before heading below the next day for the accessible tour. It's great that there's a tour that makes the cave accessible for nearly everyone since strollers and backpacks of any kind are not permitted. We weren't sure if we'd make it through the entire tour because it's hard for Teddy to sit in his wheelchair for extended periods if we're not constantly moving. We did pretty well for a while, and then we had a phenomenal ranger who let Teddy hold her flashlight and even helped him shine her flashlight at the cave ceiling to look at crystals. She engaged him in conversation and did everything she could to help him enjoy the experience. We didn't make it through the entire tour, though, and had to head to the surface early with a ranger escort. Although that wasn't ideal, I couldn't have been happier with our experience with that ranger. (I did send an e-mail to the National Park Service afterward because I believe positive feedback is critical, not just complaining when something goes wrong.)

Teddy's aunt captured this great shot of Teddy.

The rest of our trip included stops at Lincoln's boyhood and adult homes, where we learned so much about one of our nation's greatest presidents. Seriously, Abe's mom died of milk sickness, which is such a weird thing. Google it. It's interesting.

But the highlight for the boys was the park that Dave and I feel shouldn't be a park, but that's beside the point: Gateway Arch. They both loved the tram ride 630 feet into the sky in the space pod, as we called it. Teddy thought it was so cool that he got to explore the top of the arch and peer out the window surrounded by 80+ of his closest friends. (So many people packed in such a small space!)

We ended our trip with a visit to Indiana Dunes, which we visited last fall when it was a National Lakeshore. It was upgraded to a National Park this winter, so we had to check it off our official list. It was the 50th national park for me and Dave, the 38th for AJ and 36th for Teddy. It also allows us to say we've visited all the national parks in the lower 48 ... again ... for now ... until they upgrade any more ...

Vacations have never been relaxing for us, and they'll continue to evolve over time as we adapt to Teddy's changing needs. For that Disney trip in June, though, I think I need to call Teddy's neurologist to find something that helps that child sleep for the sake of everyone's sanity!

I love hiking, even when my pack wiggles, giggles and tries to steal my sunglasses.

A Typical Sick Day for Teddy

I feel bad saying this, but if I have a child home sick from school, I much prefer it to be AJ. There's two reasons:

1. I don't worry about AJ having seizures when he's sick.
2. AJ will lay on the couch and watch movies, relax and rest.

On the other hand, Teddy home from school alternates between worrying about him and worrying about my sanity. Let's illustrate today in a series of photographs:

Beautiful melted crayon art we created.

Not so beautiful melted towel. Guess who managed to sneakily turn on the stove?

Teddy packed his backpack ... with my winter boot, Dave's shoe and a cowboy boot. 

We played waffle blocks. Clearly, this is a picture of us playing waffle blocks.

Teddy tied up the stairs with my bootlace, while bouncing on a saddle bench. 

Teddy helped me with an hour-long work call. Couldn't have done it without him.

Of course, he was sick, so we had to take a nap. The nap looked a lot like this:

Aside from me wiping his nose approximately 100 times today, I couldn't tell he was sick. 

Spring Into Bronchitis?

Well, we got an extra hour of daylight today and an antibiotic to go along with it.

Teddy started with what appeared to be a cold Thursday with a runny nose, which quickly was accompanied by a cough. By 3 a.m. Friday morning he was up to 102­­°F. However, after 20 minutes for the Tylenol to kick in, he was ready to play for the day. I mean, otherwise, why else would Mom and Dad both be in his bedroom at 3:30 a.m.?

That's how he spent Friday: mostly his happy self with snot constantly dripping out of his nose, until I forced him to try to nap.

One of the biggest challenges with Teddy is to know whether to bring him to the doctor or ride it out at home. What appears to be a cold can quickly escalate to a fever, but how are we to know if it's a simple virus that will run it's course in a day or something more? We have no idea if he has a sore throat aside from his eating habits possibly changing. We have no idea if he has a headache. We have no idea if his chest feels weird or tight.

All we know are what we can see:

• Fever that is mostly contained by Tylenol and Ibuprofin
• Snotty nose
• Dry, irritated cough

Last night his fever didn't spike through the night, but he was slightly warm this morning. But as I watched him sit at the table staring at AJ organizing his art drawer, I determined that we needed to take him to the doctor. You see, AJ pulling out every art supply known to man and stacking it all over the counters is an open invitation for Teddy to run over there, knock down half the stuff, grab what he wants and run away laughing. Yet all he did was watch and wander over twice, not touching a thing and not pushing past AJ to get to all the fun stuff.

A docile, sick Teddy is worth a trip to the doctor. The verdict is likely bronchitis with an antibiotic because with Teddy, we always err on the side of caution. (Trust us, with AJ, we heed all the knowledge regarding antibiotic resistance.)

He's pretty darn happy for a sick kiddo. 

Yet I walked away from the doctor's office and called Dave to tell him I won: simply because Teddy had a treatable diagnosis. I consider that a minor victory as opposed to the times we walk away hearing it's just a cold. 

On a related note, as I'm home with him tomorrow, I wish he would sit, snuggle and watch a movie at least when he is sick. This child does not know how to rest in the least. 

F- the Flu

Get it? It's kind of like F- you, except it's F- the flu. At least I have a valid reason for not posting for the past week. A week ago Dave left for a work trip and asked if I was sure I was fine with the kids, and I replied, "It's only a cold." The cold had just started that evening where I was feeling run down with my head all a mess, so no big deal. I usually protest even taking Dayquil for a cold (until I realize how much better it makes me feel). The next day my "cold" was in full force, and I was so exhausted after work that I rested in my car before heading into the grocery store to grab a few things.

Finally, after a second night bundled in blankets and then covered in sweat, I took my temperature Wednesday morning to find 102.4°F. After a quick Google search, I reluctantly admitted to myself that my "cold" was probably the flu. I talked to my doctor's office and then went to visit them for good measure. I got Tamiflu with hopes of not passing the flu along to Teddy, and then I talked to his doctor's office and got him a prescription of Tamiflu as a preventative measure based on his congestion and cough.

Then Teddy spiked a fever Wednesday night, when Dave was thankfully back home. AJ lasted 2 hours at school Thursday morning before he spiked a fever. We visited the walk-in clinic Sunday for Teddy's new addition of a rash because apparently he's allergic to Tamiflu. Go figure. The kid is already allergic to amoxicillin and cephalexin. He's obviously not supposed to get sick, but that doesn't stop him.

When the fevers mostly abated, there were smiles. Then a few more fevers for good measure.

I've determined from this experience that we will continue to get the flu shot every year because I'd much rather prevent this from ever occurring again if that's a possibility. Also, if this was the weakened and shorter version of the flu, I certainly don't want to experience the full nastiness. It's a full week later, and I'm still dragging from it.

The silver lining, and there always is one, is that Teddy's Keppra earned its keep. He survived several consecutive days of fever and nearly a week of illness without a seizure. Trust me, Keppra has been at the top of my list. Sleep has been in second place and a husband picking up the slack is a close third (which is why sleep was able to come in second because I got enough of it to appreciate it.) 

Can't Catch a Break, But He Can Catch Croup

Teddy seems to have a perpetual snotty nose. It seems like he holds onto colds longer and just can't completely shake the snot. So we didn't think much of his snotty nose this past week until he didn't want to eat breakfast Thursday morning. He played with other children happily and seemed mostly his usual self at his neurology appointment (more on that another day - nothing alarming). When he didn't want to eat lunch, that's when I wondered if he had a fever. Sure enough, he was over 100 degrees.

That meant quick calls to the bus company and the school to let them know Teddy wouldn't be gracing them with his presence that afternoon. He perked up with Tylenol, and we dismissed it as the same bug AJ had the previous weekend. Teddy was back up and running the next morning with no fever.

Then on Saturday, he developed the characteristic barking cough and wheezy breathing of croup. Dave took him to the walk-in clinic, where he was diagnosed with croup but given no medication because it's a viral infection.

Hanging out at the doctor's office - great place for a Saturday.

He napped both yesterday and today and slept fairly well last night despite the barking seal cough that punctuated his sleep. Dave slept next to him a good portion of the night and early morning hours, just to be sure all was well.

The last time he had croup, that I recall, was unseasonably late in the year in May 2015. I remember that distinctly because that bout of croup led to a middle of the night ER visit with me rushing him to the ER because of a seizure. Croup is bad enough because it's tough to hear your little one barking like a seal and wheezing for every breath like a smoker with lung disease. But for me, croup is scary because it was one of the illnesses that caused him to have seizures and has all those memories of the seizures and ER visit associated with it.

He's seemed less wheezy throughout today with only periodic coughs, but night is when croup worsens. I'm hoping tonight goes as smoothly as last night. I'm expecting him to stay home from school until he's past the worst of it to avoid sharing it with all his classmates (since he doesn't know how to cover his coughs ... and licks everything).

On the bright side, one of the things that makes it easier to breath with croup is cold air. Fortunately, in Wisconsin this time of year, we have plenty of that. So he was bundled up this morning before 7 a.m. for a bike ride to start the day with a bit easier breathing. That's a win-win for him!

Look! I can bike and breathe!

Patriotic Teddy

Two days ago, Teddy went to school looking very patriotic. He was, quite literally, red, white and blue:

The red is quite obvious Blue was on his hands, so you can see a bit peeking through around the drill.

We had an appointment 30 minutes away to pick up his new braces, shoes and compression shorts and shirt. He was agreeable for that and downright excited when he got to try out adapted bicycles (more on that when it arrives ... he got approved today!). But when we got in the car to head home, the screaming started.

And it continued for about 20 minutes of tired, crabby Teddy who wanted nothing to do with any snack or drink I offered him. When he found AJ's zipper pockets, he finally settled down. That's because he was happily coloring ... himself. He colored his hands blue and his face (and half the back of his head) red. He even managed to color inside his ear.

Needless to say, the screaming resumed when I pulled off the highway to take away all the markers. As soon as we got home, I put him down for a nap and spent a good 10 minutes picking up all the markers, crayons and other drawing utensils from my car. Amazingly, Teddy fell asleep right away. Apparently the combination of the very tail end of a cold and ear infections in both ears and a lack of sleep for the last week finally caught up with him enough to take a mid-day siesta (as opposed to his stylish look of black bags under his eyes this past weekend).

I woke him up 25 minutes before his bus arrived and proceeded to change him out of his new compression clothes (since his classroom would be in the 80s that day), which meant completely undressing and redressing him, including his braces and shoes. I also had to change him and write a quick note to update his teacher on those two ear infections. Oh, and I had to feed him lunch, which was the most challenging aspect because it's hard to feed a child who's screaming because he's still waking up.

We finished his lunch with me chasing his shirtless self around around our driveway, holding bites of food in one of my hands and a Kleenex in the other. When the bus turned onto our road, I did one last nose wipe and pulled his shirt on him.

Needless to say, that 25 minutes did not include any time for washing the marker off him. So that is why Teddy went to school wearing red, white and blue. (He's my child, so he's inherently pasty white.)
dfa

So Sick of Sickness

I feel like my house is a petri dish. Well, not so much anymore now that my living room is piled with 6 loads of unfolded laundry and bedding ... and that I used pretty much an entire spray can of Lysol disinfectant in the past 24 hours ... and that I used two bottles of homemade essential oil disinfectants ... and that both children have antibiotics in them and are hopefully no longer contagious.

For the past month, we've cycled through viral infections, impetigo, colds, probably more viral infections and now strep throat. I've determined AJ and Teddy should really stay healthy because antibiotics don't seem to work so well for them. They both inherited my allergy to the penicillin family, which rules out a large number of drugs. Teddy reacted to the cephalexin from the impetigo. (Let's just say that what we were pretending was dry skin went away really quickly when he stopped that medication.) And we're hoping 3 out of 5 doses of azithromycin are enough to have wiped the strep out of AJ's system since apparently he develops a really cool itchy rash from that medication. Seriously, if they keep this up, they're not going to have any antibiotics available to them.

AJ was diagnosed with strep Friday evening (fun Friday night date!), so we began watching Teddy closely for fever or rash. Sunday afternoon he had a mild fever, so when he woke up with a fever of 98.8 Monday morning, that meant he went to the doctor instead of school. Turns out he did indeed catch his brother's strep (and then probably caught a cold and/or who knows what from the waiting room since he still feels the need to taste test inappropriate things).

I'm glad we took him in with such a minor fever because the diagnosis was confirmed. I feel like we should get a gold star for parenting a non-verbal child who can't tell us in a way we can understand that his throat hurts, that he doesn't feel good or that he's sick. We used to be overly paranoid with every fever but have gotten a bit more lax about minor ones where Tylenol or Ibuprofin do the trick because it's been so long since he's had a seizure. It's so hard to know, which is frustrating. Yet I talked to a mom whose daughter is tube fed, so she doesn't even get the potential warning from lack of appetite.

Who knows? Maybe Teddy had strep before AJ, and we just never caught it. Not that I want Teddy to have strep again ... but next time it'd be nice if he got the really distinctive rash AJ did. That might help us figure things out a bit sooner.

Sickness, Spots and No School

Today is the first day in more than a week that both my children have went to school ... and now I'm stuck on the phone with the insurance company trying to sort out claims that appear to be incorrect (like discounting $13,000 worth of my Remicaid). And, apparently, my provider is on the hook for that $13,000 because no prior authorization was submitted. Sounds odd, but as long as that $13,000 responsibility stays between the provider and the insurance company, I'll take it.

Anyways, two weekends ago, Teddy developed a fever. It never went much above 100 with constant medication, but he was pretty crabby and miserable. We were pretty concerned because fevers can trigger seizures. The doctor said it was a viral infection causing the fever, crabbiness and rash, and it kept him out of school all last week.

Then Wednesday AJ developed a fever, so he missed school Thursday. Of course, the fever cropped back up again for him Friday afternoon and Saturday. On Sunday, our sitter said the rash AJ had on his face looked like impetigo, which I had to Google because I had no familiarity with it. As I realized this meant neither child was going to school on Monday, I uttered a few choice words (in my  head).

The doctor confirmed impetigo for both children. They're on antibiotics and no longer contagious. In some ways, I'm amazed we made it until March with either child missing a day of school due to illness. Of course, they made up for it by missing 7 days between the two of them.

Oh, and by the way, if you forget to call the school to let them know your 4K student isn't coming, they're pretty persistent in wanting information to remove the unexcused absence. But apparently they apparently don't care if Teddy shows up at school.

I have 30 more minutes of glorious freedom.