Wednesday, December 17, 2014

When Couches Attack

Ben has adapted to sleep with bi-pap fairly well. We haven't seen any sweeping gains in the health or energy departments, but it's probably too early to tell and I'm pretty sure his settings still need tweaking. I finally became sleep deprived enough to snooze through a night and now I'm over my anxiety of him having trouble and not being able to get our attention. That, and we gave him a bell.

I'm thrilled to share that Ben's wheelchair arrived before year's end, tacking the cost onto the long ago met deductible. Day one he practiced in the house. Day two he maneuvered on a quiet street. Day three he practiced on the gym floor at school, and this weekend he took it from home to the local bakery and back again with only minimal assistance. His poor hands were blistered and sore after the gym experience so I ordered him some bicycle gloves in matching red. It really is an exciting new world of independence for him. I'm starting to feel like high school isn't such an impossibility. Ben, who usually prefers to be home, has been asking to go places. That alone makes the whole process worthwhile. This chair is so much heavier than the loaner due to the power wheels that weigh about 25 pounds a piece. Right now the only way I can transport it is to break it down each time. We're looking into a foldable portable ramp, but I'm wondering if I have the strength to push the chair up the ramp into the van. If you give a mouse a cookie...

We had planned to host a party for some friends this past weekend, but the illnesses of said friends caused us to postpone. We'd already thawed the turkey, so we had to cook it. We tried to come up with a last minute dinner party of people we hadn't seen in awhile, but in the end, it was Chappy we were meant to feed. We had a big Gaudate Sunday celebration complete with Nerf war and it was joyful.

And then we got sick anyway.

Sadly, a flu like fever has kept me from both of Alex and Gigis' Christmas programs and our big PSR neediest cases wrapping party. I think this year has been record breaking in mom illness. I haven't been this sick since my first year of teaching. The blame lies with lack of sleep and preschool germs. I raise my glass of Nyquil to a healthier 2015!

Ready to Sing!

Kid Quote:
Mom: Alex! Why haven't you emptied the dishwasher yet?
Alex: Sorry, God distracted me.

Reading the Bible is effective anti-nag defense

Gigi (pointing to our sofa): Is this an attack couch?
Mom: Wha?
Gigi: Like the devil sits on a attack couch?
Mom: If the devil doesn't like it, he can sit on a tack. Ouch!

Sunday, December 7, 2014

Candy Canes and Headaches

Tis the season to revel in the last moments before the out of pocket maximum rolls over. Insurance has been a daily household word around here for oh about 12 years, and the word doesn't illicit positive connotations. I try to avoid complaining, so I generally avoid sharing my frustrations on this blog but in case you are believing the ACA somehow solved the coverage problems of the nation, you won't find that reflective in our case. My insurance woes have been tenfold this year and it's on track to be worse next year. I'm once again thankful that we made drastic changes in our employment and financial planning when we knew our hopes for a healthy family were not to be, but I hate feeling punished for making responsible choices. That is one thing our government has wrong. Still, I'm thankful we have access to top notch care, I just don't care for the greed and inefficiency that gets in the way.

Excuse my rant, it must be from all the extra pressure in my head. There's no believable way for me to share this but I've just been told I have a non-cancerous tumor in my brain. Specifically, a 3 mm prolactinoma in my pituitary. No reason to fear, it's not a big deal, just an annoyance at this point requiring annual brain MRIs to watch. Back to rant mode for a moment, shouldn't I be more concerned about the results of my next MRI than the prior authorization and co-pay? It's the auth I dread the most. I just think it's crazy how yet another medical oddity and specialist has been added to our load. Maybe it's somehow connected to our underlying neuromuscular disease, but right now it just feels like being hit with another bus. Granted, this example is more like being hit with a Mini Cooper. When will we learn to stay on the sidewalk?

In other medical news Ben now uses a bi-pap at night due to apnea. He was supposed to start about a week before Thanksgiving but you know, we had to go through some extra hoops to prove he really needed to breathe all night. He hates it now but managed to wear it for five uninterrupted hours last night. He has trouble keeping his mouth closed due to facial and oral weakness which creates a leak in pressure so he may need full face coverage, but drool in the mask would be bad too. Chin strap? I'm hopeful getting better oxygenation and rest at night will translate into a healthier Ben.

I moved most of his equipment next to the pull out chair bed so now when he needs treatments at night he can sleep there and the commotion doesn't disturb Alex.

Interestingly, a stranger came up to Ben after Mass this morning and gave him a healing blessing. Her manner and words were very comforting. I love those God moments and I wonder what led her to that action?

Our boughs of holly have decked our halls, St. Nicholas filled the shoes, and we have been filled with the spirit at Our Lady of the Snow's Way of Lights.

We stayed out too late and Gigi was half asleep and whiney during the car ride home as Alex started to lose patience.
Dad: Alex, speak with love.
Alex: I know but sometimes she makes it hard.
Mom: Gigi, you need to speak with love too.
Alex (muttering): Or at least grunt with love.

I tried something new with our santa ornament collection. We have one for every year of our marriage and the kids love hearing the story behind each and are already speculating on the potentials for the 2014 santa.

Alex completed his soccer season and had a phenomenal coach. He sent personalized messages after each game highlighting the positives of each player and encouraging their development. They had an end of year ice cream party and got trophies. Each had a nickname added to the engraving. Alex's is so true and a real blessing for our family.

Last name and location obscured

Smiles are plentiful with this one around as well.

Ready for Sunday School with Nicky, the Way of Lights Dog

She swaddled herself and couldn't get undone

Gigi's Drawing of Santa

May this Advent season of preparation fill you with peace, hope, and charity. I'm working on it, I'm working on it!

Tuesday, December 2, 2014

Throw Back Thanksgiving

We had a relaxed and uneventful Thanksgiving break at my mom's catching up, cooking, watching the parade, walking in the woods, and letting the interstate cousins play. The only cooking mishap this year was when Gina's chocolate pie jumped out of the refrigerator and shattered. Luckily, Jeff's birthday dessert served up our chocolate fix.

The G's prepare cornbread. Most of the cornmeal ended up in the bowl.

My favorite chore: setting the table, but too much elbow room this year.

My gorgeous sister and adorable niece

The night before Thanksgiving Gramma was informing Gigi about the holiday and explained that we should list all the things we want to thank God for, like food and clothes. Gigi added, "I'm thankful for hands so I can give you hugs."

As usual we lugged out some old photo albums and lamented the need to reorganize and salvage the decaying books as escaped prints cascaded from their once secure moorings. Acid free boxes? Scan them all? Take pictures of a few with a camera phone and use them in a blog post?


Like the albums from whence they fell, these are in no particular order.

My Little House Phase. I'm still Laura at heart.

Back in my day we scrounged for Halloween Costumes the evening of. And we liked it. 

I'm not sure what this repeated costume says about my sister. 

That was a great cat. Groucho.

Dad made me ride Space Mountain. I survived. I suppose. 

He probably doesn't remember that I dropped him. 

This pretty much describes how we spent the mid 80s. He was an entertaining baby.

My mom's parents: Wilfred and Ruth

A few of Dad's family. Uncle Paul, Wally, Uncle Clarence, ?, ?, Grandma Theresa

Ready to ride at Uncle Lawrence's. I can't identify anyone. Help? Is that a goat?

Is this from our Champaign, IL apartment? Mom? 

Back deck at Jefferson City house. The dog is Herbie.

Dad added a second story to the existing tree house. Terre Haute, IN.

We surprised Dad for his 50th birthday party. Weren't we clever. 
Well, that was fun. For me. Wish I'd taken more. I captured none of my mom. I'll be back for more at Christmas.

Once the leftovers were safely tucked into their Tupperware, it was familially acceptable to deck the halls.

Putting the topper on makes me miss my dad. It was always his job and he'd make a big silly deal about it. Now we just do it and it's done, but in a big empty quiet.

I'm really working on gratitude and joy in my life and opportunities to practice keep appearing.  I feel like I'm being prepared for a bigger challenge ahead and having the tools of joy and gratitude more readily available will be the way through. Advent is ushering me from reflections of gratitude into the season of Joy. We lit the candle of Hope, (unearthed from the basement three days late) soon followed by Peace which is sorely needed in our city now. Some Advents come and go merely marked by melted wax and rote prayers, but this Advent has me stirring. Usually after a big event in my life I can look back and see how God was there in places I hadn't noticed. I'm trying to be more aware and live those moments with Him, no reflection needed. He isn't only there in the hard times, that's just when I tend to ask.

- Let us come into his presence with thanksgiving. Psalm 95:2 

Sunday, November 23, 2014

Bound Home

Ben's increased difficulty with swallowing is likely causing recurrent respiratory challenges. His baseline is changing and it feels like a step back with more treatments and medications to keep him well-ish. He did manage five half-days of school in a row and some fun times with friends before his lungs started filling again. So as annoying as middle of the night breathing treatments are, it's probably better to be less aggressive with the weaning back, at least until we get through this winter. Lesson learned. Yawn. We'll try to shore up a plan of attack with the pulmonologist this week.

Alex often supports Ben during his treatments. More often I'm finding Gigi in the pile as well.  

Ben was treated to a mystery surprise. I don't know how, but he received a get well letter from the St. Louis Cardinals. It was a truly bright spot in a crummy time for him.

Good news is we now have an awesome tutor that comes weekly to help me with our pseudo-homeschooling set up and Ben's power-assist wheelchair is supposedly on track to be delivered by Christmas. Jason and I also scored a little grown-up time by attending the Garden Glow at the botanical gardens with good friends. It's good to remember we are a couple on occasion, and not solely tag-team parents. 

Gardenland Express

We're taking things one treatment day at a time, but hope to be with some extended family for Thanksgiving. There I'll remember my blessings, that often show themselves in the sweet pairings of words from these amazing beings I'm privileged to help grow.  

At dinner Gigi offered, "Next time I'll have a pickle sandwich but without pickles. I don't like pickles." 

Gigi had a fever and was uncooperative in having her temperature taken.
Gigi: But I'm not sick!
Mom: Good, then you can clean up the toys.
Gigi: Well, maybe I'm a little bit sick.

First SnowFALL

I had just dropped the boys off at school when Gigi exclaimed, "Oh Benny! What are we going to do with him?"
Thinking he'd left his backpack behind I asked, "What do you mean?"
She replied, "He's just growing up so fast. He'll get married and...(shocked whisper) will he have kids?"
"I don't know, will you have kids?" I asked.
Gigi predicted, "When I'm grown? Of course, I will! I'll grow a baby in my belly and then I'll be Mom. And I'll let my kids clean up their room. And I'm going to teach my baby how to walk. I need to make a plan because I don't have a bed for her or any things like diapers."

Gigi (sad to be the only one not sharing a bedroom): I just want another human in my room. And not just a dog, or a doll, or a stuffed animal, like a sister or a mommy. 

Alex (after thinking too long about hunting): Sometimes I don't like people which is weird because I am people. 

As seen in the school hallway

Remember your blessings and pray for peace. I've started doing this every night at 8 pm (my phone alarms and reads, "Airway tx and pray for peace"). Join me? I also pray we'll all find time for the important things this season of reflection.