Wednesday, August 20, 2014

Cooling off after our Hot Feverish Summer

The acronym, PFAPA sprang into lives at the end of June. It has been effecting us since May.

May 14th Oliver was sick just like the majority of kids in his school. A fever for two days, some stomachaches and vomiting and he was better. It was a pain when he was sick again on May 29th, the day before we were to set out on our first summer vacation. Again, stomachaches, headaches, a loss of appetite and he bounced back two days later. It was slightly worrying when again, on June 13th his next fever came. This one higher than the previous two. More stomachaches, vomiting, swollen tonsils. We took a visit to the doctor to rule out Malaria due to our trip in March to the Dominican Republic as well as Strep. These tests were hard with a kid who hates being poked and prodded. They were full of vomiting, screaming, crying and were all negative. It was a little expected, and yet, alarming when the fevers, now high and lasting 3-4 days came back on June 29th. The pain was so great it was waking him at night and resulted in an ER visit at 12am to rule out appendicitis. "Do you think it could be PFAPA?" I asked. The doctor thought it was a possibility, but typically 6 months of data plus blood tests and a steroid test is needed to to make the diagnosis. I decided to make an appointment with a pediatric rheumatologist just in case these fevers kept coming back. The appt. wasn't until Sept., so by then we would have 4 months of data to go in with. I sat down and charted the fevers and wrote down on the calendar that if this was PFAPA, he would be fevering again on July 14th, the day after he turned 5. He was.

It is one thing to say, let's wait and gather information until our appt. in Sept. It looks good, and logical on paper. In reality, when your five year old is fevering and in complete pain for 5 days it seems completely illogical. I called our family practitioner and told her I believe Oliver has PFAPA. She had never heard of it. I told her one of the main test is to prescribe Prednisone to see if it gets rid of the fevers and other symptoms. She understandably did not feel comfortable prescribing steroids for a disease she had never heard of and asked me to make an appointment with an infectious disease doctor. I did, we wouldn't be seen until August 5th, two episodes away.

Those two episodes seemed unbearable. To watch Oliver waste away for those days being in such extreme discomfort was a bit maddening. I am not one to over dramatize things, but this thing that was happening to Ollie was a bit unacceptable, especially when I felt like we already knew what was happening yet couldn't do anything about it because we could not get into a doctor. My dad was on the hunt to help Oliver just as much as I was and between the two of us we were watching webinars by top rheumatologists, emailing with doctors across the country, talking to local doctors that were friends or friends of friends, joining support groups and talking non stop about choices. Basically, it came down to the fact that we wanted to have a tonsillectomy, not treat the symptoms with drugs. The problem was that Oliver had not been diagnosed yet.

I made an appt. with an ENT for two days later. Oliver and I went to the meeting armed with Chris, my dad, and a detailed history of what had been happening. She listened, and then she agreed. It was the first time my chest loosened. My brain slowed down. The world stopped spinning. She agreed that moving forward with a tonsillectomy and adenoidectomy had a good chance of "curing" his PFAPA (nobody knows if this is an actual cure or if it just treats the underlying symptoms so kids are asymptomatic). To highlight how rare this is, she is one of 9 ENT surgeons at Children's Hospital that services Denver, Broomfield and Colorado Springs. She sees 3 cases of PFAPA per year.

Oliver had his surgery on July 28th. After a pretty uncomfortable recovery, Oliver is back. He was supposed to have had two more episodes by this point in time and they never came. He has gained 2 pounds of the 4 that he lost during the PFAPA episodes and surgery. He has been full of energy, participated in his first kids triathlon and is back to being his funny little self that we all missed for those weeks. It is true that he was bouncing back between episodes, however with the anticipation of another episode always less two weeks away our lives started to revolve around this syndrome/disorder.

Our summer is slowing down, we are going to start school. We can do this all with a sigh of relief that school will not stop every other week and that we can plan to continue on with our road trip as we had. PFAPA is still a part of our lives, but no longer a visible one.


Monday, August 4, 2014

Happy (not) Back to School Day

This summer has been full, and it has been hard. Trips to Park City, Steamboat, Breckenridge, WY, and South Dakota fill my memory card. Our suits are constantly drying out in the backyard, popsicle sticks are a common discard and we've had more than one scratch on the knee from fun outside play.

Austin has learned how to bike ride 6 miles comfortably, do flips off the diving board, and ran in his first triathlon. He has cemented friendships outside of school and has had a blast hosting sleepovers complete with backyard fires and tents that were built to be abandoned as it gets dark outside.

Oliver has become self sufficient at swimming, a trooper on long hikes and has fallen in love with camping in the backyard by himself.

But there have been fevers. And vomiting. And late night sessions holding Oliver as he just cries. And cries. And cries. There have been hours of research, doctor appointments, and unknown health issues. There has been an emotional toll and a physical toll that doesn't usually come to mind when I think, "summer."

If I was looking at the calendar and seeing that we had only two more weeks to be together, my heart would be freezing and I would feel an incredible crush to squeeze in the fun that these feverish days and nights have been stealing from us. It is with a huge sigh of relief that I sent the official notice to our school district that our family will be homeschooling. I love that the calendar still has about a month of open play time before we will start our school and I am resting easy during these hard days with Oliver, letting him say no to park play times, pool visits, and birthday parties. I think about it and wonder how sometimes the universe just lines everything up just right. Had we not opted for this upcoming lifestyle, Oliver would be looking at an unknown future of possible many missed days of school meaning a hard transition for a kiddo that already feels best at home.

As back to school photos fill my Facebook feed, I smile at the cute outfits, the backpacks that look too big, and look forward to the stories of new teachers and friends. I am also able to breathe easy and look forward to our Back to (home) School Day.



Wednesday, June 25, 2014

Phase One: Check

Renters moved in yesterday. I deactivated my online account with our neighborhood. People are volunteering to take my spot on the HOA and we have fully settled into life as roomies with my parents. It feels GOOD!

I think Chris and I both took a deep breath on Tues. when Chris went over to do One. Last. Chore. and the renters said they would take care of it! Life has resumed as me taking care of kids and Chris working and then calling it a day at the end of it. We have both moved quite a bit in the past 10 years, this being our seventh move since we have known one another, but none have felt this hard. We've never sorted through every little piece we owned and decided whether to keep/donate/toss and that process seems to never end my friend.

Last week we took our first trial run in our Cougar and all went well! By that I mean we were tested and fared well and ended the trip not wanting to move out of the trailer.

Our first night was a midnight hook up which Chris accomplished like a pro. I was able to put kids down to bed while soothing fears that mysterious wild life was out to get us. Too bad they couldn't see the highway right outside of our camper, but maybe there would be monstrous rats that would nibble on their toes? Who knows. The next day dawned bleak and rainy which canceled our plans for biking while Chris worked, but we pulled the day off by snuggling in bed while Chris made his office under the dripping awning.

The next hookup was in a sleet and snow storm in June. That night we headed to my aunt and uncle's house and had a great time till 11pm. We made our way home (me in a skirt and flip flops) while the snow fell. A minute into our drive Austin came down with an incredible headache that ended with us pulled over at a gas station buying IBuProfin and poor Austin curled over the (gross) porcelain throne.

The next couple of days brought sunshine, smiles, bike rides and two house guests in the form of Jen and Matt. This all led up to the wedding when our poor Ollie had a bit of stomach trouble and let loose in his pants during a game of chase outside. This quickly brought an end to our wedding festivities and had us heading back to our abode-on-wheels.

Through all of this the trailer felt like home. The beds were comfortable, the toys and games were played and the space didn't seem confiding. This is all great news as like I said before we are OUT OF OUR HOUSE!



Wednesday, May 14, 2014

Up Close and Far Away

There have been two baskets in our basement that have become the dumping ground for toys that aren't quite finished, but are broken to a degree. Binoculars with a broken strap, butterfly nets with tears in them. Plastic pieces that we know go to something around here, but where or what is still a mystery. These baskets have cluttered a piece of my mind since their existence last March when a ton was moved down to the basement in order to make room for our lovely wood floors and yet, it didn't feel like clutter until last weekend when I emptied them.

The slow process of purging, purging, and emptying the house has been an unexpected benefit of this new adventure. Seeing the corners lose their stuff and baskets lay empty has freed my mind in a way that feels like a tense muscle relaxing when you didn't realize you'd been holding it so.

This trip, this lifestyle and freedom seems so close when you look at the calendar, and at the same time so far away. How will the house be completely empty in month? How will I possibly occupy the days when we are living with my parents and need to skidaddle to let my dad and Chris get work done (the two work from home, and soon, from their home). When do we start making reservations at campgrounds? But wait, isn't that what I always do...plan and create timelines when I really do not want timelines and expectations? Every weekend seems to be filled between now and June 23rd, complete with two trips, but at the same time we need to get this clutter out. And so it has started. Eleven bags have found their ways to donation places. Bins have been brought to Childish Things. Trash cans have been filled and filled again. We have a "free" table that sits in front of our house and a makeshift assemblage of stuff that will be garage saled. And the house still seems full. How much stuff do we have?

Piece by piece we are going through our lives and figuring out what is worth keeping. Our house is slowly being compressed to items that hold value instead of just place. So far Chris, the boys and the pups are still on the list :)

Saturday, May 3, 2014

...Annnnd, we have renters. We. Have. Renters. We have...renters. No matter how I say it, it's not making sense in my head. It wasn't even a month ago that we came up with this plan and now our house is rented out. For TWO years! It is absolutely nuts and exciting to think about how we are are going to fill two years of our time. It is absolutely nuts to think about packing up our stuff and moving it into storage. This whole things is crazy and wonderful.

The list goes on and on in my head...fix the faucets, the fireplace, the dining room lights. Stain the window sills. Hire a carpet cleaner. Pack and move some stuff and pack and move some more stuff. Figure out where we are even going to go.

It is mind boggling to think about fitting our lives into approx. 340 sq. feet. Laying in bed we guess our room is about 160 sq. feet. So, we get two of those. In a month, my perspective has changed and I think that looks like a lot.

Yeah, we've got this.

Thursday, May 1, 2014

2 weeks and 6 days

Twenty days is what it took for Chris and I to solidify a huge life change. One that creeped up on us and then shoved itself into our face wrapped in a pretty bow so much so that there was no desire to say "No". 

One month ago we were under contract on a sweet little farm house. A house I have been eyeing for 10 months. One that was much too much when it first went on the market and we watched as it slowly dropped in price, went into foreclosure, came back on the market, had two other people wanting it, and finally ended up in our name some how. This house screamed "home" at me, at Chris, and our boys were excited too. However, the house came with flaws. Dated septic systems, an illegal second home, well water next to a fracking zone...the list went on. So much that after meeting with the Town of Erie, Boulder County, and with ourselves, we decided to back out. It felt painful to say no, but it was the responsible and right choice. 

That night, while licking our wounds and talking in bed I turned to Chris and said, "Do you need to be in Colorado to do your job?" 

"No"

"How about we pack this life up and travel for a year?"

"Yes!"

Since then we have had the plan approved by Chris' work, had an intense lesson in fifth wheels, pull behinds, trucks, RV's, slide outs, and hitches. We found a fifth wheel and truck across the country where Chris happened to be headed for a work trip, pulled all our money from the banks and made a purchase.

And here we are. Proud owners of a fifth wheel, truck, van, jeep, camper, pop up and house. The work has begun on downsizing. Selling. Donating, Trashing. We have tons to get rid of and lots to learn, but we have an estimated departure date of Sept. 21st and huge smiles on our faces. 

Let the adventure begin, who knows what the next 20 days have in store.

Thursday, October 10, 2013

Thoughts on Success

Scene: Talking with the boys about options when they grow up.
Me: If you grew up to be like Daddy, what would you do?
Austin: Go to work, drive trucks, have meetings
Me: If you grew up to be like Mommy, what would you do?
Oliver: Hang out with my friends.

This little conversation happened a while ago, and though it makes me smile and I laughed as we were talking about it, it sticks with me. Right now, I'm OK with this being the answer, but I can't be sure that when the boys are 10 and 12, they will be able to answer that question the same way, so I wanted to take a moment and capture what is going on in this life of ours in this sparse online diary.

I am happy. I stay at home with the boys. I drive them to swim practice and soccer practice and tball practice. We carpool, I volunteer in their classes. We lay around the house for down time and have excursions to the library, museums, coffee shops (lots of coffee shops). We play video games and argue about what we will watch on Netflix and then head outside to ride bikes or see what friends are home. I do laundry (once every two weeks). I cook dinner (two times per week). I clean (when the dog hair is tumbling across the floor). There are other things outside of the home that I do such as volunteer with the Dreamers, help out on the HOA, coordinate volunteers for their school, but most of my time is spent with and for the boys. And that's good.

This week I have been taking a class in mediation. I don't know if it will lead anywhere, but right now, it is FUN. I leave the house at 7:45 and I don't come home for 10 hours. During that time I barely speak about the kids besides to say I am a mom. I listen to lectures, role play in mediation, solve problems, and share in the successes of others (a girl just passed the Colorado Bar exam today). It has been six years since I have felt this kind of enthusiasm and motivation to engage with adults, to collaborate and work with, and one of the most satisfying parts of this class, is feeling a sense of accomplishment and value that doesn't really occur that much when you stay at home.

Recently I was out to dinner with a couple of friends and my sister, and we were having a conversation about my upcoming class. I was thinking out loud of what careers I could look into as a result of this class and I vaguely compared mediation to counseling as that is what people who work in mediation will do and so I have picked it up as a reference point. I was not saying that mediation is counseling, but that the two careers are meeting with people in high stress situations and are trying to help find a resolution to their pain or hardship. One friend we were with recently just earned her Masters in counseling. The comments I was making was in an effort to recognize that I didn't want to go as far as counseling or take on that much in schooling, so a step before that level of commitment would be mediation. I have no idea if our friend found my comparison to be offensive, but my sister did as she later pointed out to me that our friend had just spent 3 years working towards this degree and it would be presumptuous of me to compare myself to that level. I agree (even though as far as I know, our friend wasn't offended, I wouldn't have minded if she had felt that way). The point being that she has worked her butt off and has been validated for those efforts in the form of an MS. And I think to myself, what a neat little system we have here. EXCEPT when the job being done isn't easily evaluated or have an authority figure.

I see my friends, old colleagues, and my sister succeeding in their careers. I hear their grumbles over lower raises, and being looked over in a meeting while at the same time I celebrate their successes and bonuses and degrees earned. I support Chris in career changes and tactics used in meetings and am (VERY) happy when he achieves raises and bonuses. I discuss the kid's successes and achievements with people and we celebrate with ice cream and extra stories at bedtime. I am happy for them all. And yet, not having any measurable success of my own and feeling like it might be embarrassing or a put down to compare myself to my friends doesn't feel all that good.

To stay at home, you need to find your own success and I'm not talking about feeling great when you have finally finished every piece of laundry in the house. I need (and I think it's safe to say that many stay at homers need) to find peace in the monotony. To understand people are not going to come give you a pat on the back when your kid learns to swim as that isn't your success, it's your kid's. To understand your success is that you created an environment where your kid had access to the pool, the time to learn it, and the confidence to try, and to know that that won't be acknowledged by most. I need (and I have) a partner that understands this and is amazing at communicating how happy he is, or grateful for the life that we have created for ourselves, and that feels good. To stay at home, you need to feel successful when that success is not measurable.

So, back to this class...it has been such an incredible experience, or a gift to myself, to see that I still have the desire to be beneficial to this world around me. That I enjoy when my thoughts are valued outside of parenting and that my vocabulary has not disappeared with my paychecks. And I think to the future, and I try to think about what that might look like, and I have to think that this part of me, the happiness that resides in being involved in things outside of our family will have to have some attention as the kids get older and aren't with me the majority of the time. And yet I am also so happy that this little test has shown me that no matter how much fun I have conversing and being with adults, there is nowhere I'd rather be at this moment then with the kids. I never pictured myself as staying at home, and yet I know without a doubt that there is nothing else I could do. For these few years, my place is at home, Chris is my sounding board, and the quality time with the kids is my paycheck. And that feels like success.