Thursday, July 17, 2014

Little Things

Grampa is getting the boot from the hospital on Sunday. We're scrambling to make a new plan for him, because he isn't ready to be at our home. We're hoping to find a good fit with a skilled nursing rehab facility in the short term, and getting him back home to independence in Iowa in the long term.

Building Planes for OT

Ben started coming down with something last night, so I took him in to the pediatrician for a tune up this morning and was told he's coming down with something. It looks like it wants to be pneumonia, so hopefully we can trick it into moving on.

I told Ben to hook himself up for a vest/breathing treatment.
Ben: I don't want to.
Mom: And I don't want you to catch pneumonia.
Ben: I think we've learned by now that it's not so much me that catches pneumonia, as it catches me.
Sad, but true.

MDA's loan closet came through with a great new wheelchair for Ben. It's made of composite so it's much lighter than the solid metal we had before, and it breaks apart and folds up into more manageable bits. It fits him so much better and we're very grateful. They almost brought us a power chair by mistake and the opportunity caused me to think about the possibility for the first time. I'd ruled it out because we don't, as yet, have a way to transport a power chair and it seems like more than he needs since he is ambulatory, for the most part. Propelling his own standard wheelchair isn't really an option since his arms are just as weak as his legs.  A power chair would provide an opportunity for Ben to get around on his own locally, as in "walking" to school and friend's houses and would give him much more independence. Something to think about when my brain can spare the space.

Old Chair

New Chair. He's actually very happy with the chair, just not feeling well, here.


Gigi was walking along the arm of the couch so I told her to get down.
Gigi: But I'm doing my training!
Mom: What training?
Gigi: For my exercise!
Mom: You'll have to train on the floor.
Gigi: Please, Mommy! Please? I'll give you all my money in my whole piggy bank! Please? I'll never eat cookies ever again. For my whole life!
Mom: Sorry, chickadee. On the floor.
Gigi: You mean you aren't my mommy any more?

Wha?



I swallowed my fear and let Alex momentarily out of my sight by sending him to a modified version of Cub Scout Camp. He didn't spend the nights and he was there only short stints when one of us couldn't be nearby. He was still getting regular treatments from his allergic reaction and I wasn't convinced it wouldn't creep back once meds were stopped. Do other average 21st century Midwestern families expend this much mental energy trying to keep their kids out of hospitals?

Pick up time: With Epinephrine strapped to his chest


We were hanging out as a family telling jokes and one fell a little flat.
Mom: I think there was something missing from that one.
Ben: Yeah, humor.

Dad: What kind of fish is afraid of dogs?
Mom: Catfish!
Ben: What kind of fish is afraid of cats?
Mom: Dogfish!
Ben: All of them.




I was having a frustrating time at the hospital and had all three kids along with many hours of waiting. We whittled some of the time in the cafeteria. I very rarely allow chocolate milk, but it was that kind of a day and it just felt good to surprise them with the treat when they didn't even ask. The kids were reading aloud from the carton that said, "Describe a great day." Gigi lifted her carton and proclaimed, "This day because Mommy said yes to chocolate!"



It's the little things. Joy is having little ones that can see and know just when to point them out.




Our sunny spot moved









Monday, July 14, 2014

Launch Photos

I just got my hands on some photos my brother-in-law, Hugh, took over the Fourth. He has an eye for detail and apparently knows how to use his camera. I love these moments he captured and just wanted to share, with his permission. Thanks, Hugh!




Purple Crayon has Lift Off!

Recovery Team




God Speed, Lego Man!
One might conclude from the bunting, the columns, the Mandvilla, and the Houstonian substation that my mother lives on a Southern Plantation. She doesn't, the back deck with walkout just kind of looks that way from this angle.



Friday, July 11, 2014

A Case For Living in Bubbles

Jason had the first week of July off and we planned long ago to spend the first part over fourth of July with my natal family in Southeast Missouri and the second part visiting my extended family in rural central Missouri. Due to complications and more surgeries, Jason's dad has been hospitalized again, so family came down to stay nearby while we were away. All of my brothers and sisters, nieces and nephews converged at my mom's house for the extended weekend. We number twenty now. I'll let the pictures tell some of the story.

We shot off model rockets

And captured bugs for Ben's science homework

We hiked in the woods

And got all 11 mostly cheery cousins in one shot

Then we came home for a day of reconfiguring and planned to leave early Tuesday morning for my Godparent's farm with my mom and niece in tow. As things seem to go around here we were delayed when Alex showed us a very swollen bug bite that needed medical attention first. The pediatrician wrote him a script for an antibiotic he'd had before because she was concerned it could get infected while we were away. We filled it, gave him his first dose and loaded up, stopping for cake pictures along the way.

My Godparent's Farm
 Once we arrived, we discovered Alex's trunk was covered in hives and we had no cell service. We managed a call into the pediatrician and started him on antihistamines. Other than the hives, he had no other symptoms.


So we played while I kept an eye on Alex and Epinephrine in my pocket.


Cousin Mary Kay leading her horse to water

Mary Kay's Doctor's Buggy

We need more power!



My Cousin Andy's Spring Wagon

Put Put with my Godfather (My dad's brother, Paul) at the wheel

Aunt Laverne has many talents

Gigi caught several Blue Gill

Alex did too, as well as a catfish

My Dad's cousin, Ed, supplied the catfish he'd caught, filleted, breaded, and fried.

Our walking stick, Buster, coming soon to a science classroom

My Dad's oldest brother, Lawrence arrived along with half his twelve kids and several of their spouses, kids, and grandkids. 
Cousins Ed and Lawrence Talking Geneology

All that's left of this generation that could come: Lawrence, Laverne, Paul, Carol, Dori

Hanging out on the dock while Alex itches


Feeding the fish at sunset


 It was about this time after two days of come and go hives, that Alex came down with a fever and fell asleep on the couch. My mom instincts went into high gear and I started counting his respirations and checking for wheezing, or anything to indicate that the reaction was morphing into something more serious. Shortly after another dose of antihistamine, his lips, face, and hand began to swell. We grabbed the epi, gave him a puff of albuterol, and hopped in the car for the closest hospital, calling 911 on the way. By some miracle, the call went through and the ambulance met us on the way.



They started an IV and monitoring and said we'd already done everything they would have done. We got to the hospital and they gave him prednisone, zantac and more benadryl via IV and finally, the reaction began to reverse. Alex was a real trooper through it all, but I've had it up to here with family emergencies. I'm putting everyone on notice that there is to be no more of this white knuckling malarky on my watch.

The scary thing is that the reaction lasted so long and didn't seem phased much by copious amounts of Benadryl and we aren't 100% sure the culprit was the antibiotic. I already had an allergist appointment on the books for next month, so hopefully that testing will provide some peace of mind.

For comic relief, I'll share the part where I almost got arrested due to a case of mistaken identity. We'd been discharged from the ER and I stopped at the registration desk to give our insurance info and pay the copay while Jason made Alex comfortable in the car for the ride home. A cop appeared and stood behind the registrar looking at me intently. Soon another cop and one of the EMTs stood beside him all with the same stance and look. First, I thought the lady behind the desk was in some kind of trouble and they were just waiting for her to be done with me before nabbing her. Then I realized they were checking a sheet and comparing it to my info on the screen. I heard them discussing the spelling of my last name (which has many common derivatives) and a discrepancy in the middle initial. The EMT laughed and said, "I knew it wasn't her," and they dispersed. So if you share my name and did something illegal in the middle of Missouri, they are hot on your tail.

After two nights of worry, we headed the long way home, making many stops to inspect Alex for symptoms and pick up some more far flung St. Louis Birthday cakes.

Arris' Pizza, Jefferson City, the site of my parent's first date.

Stressed is Desserts spelled backwards

Black Madonna Shrine


St Joseph Grotto


Bens

Still in one piece at the Franklin Co Courthouse
And that's how we spent our summer vacation.