Sunday, October 19, 2014

Ben's Slideshow

Ben's class has adopted people with disabilities as their vulnerable population to focus upon all year. The hope is that they will be able to serve and better understand the issue as they travel through the grade levels, putting their faith into action. It seemed like a teachable moment, especially when Ben voiced that he wished his classmates understood all his challenges without him having to explain it all out loud himself. Thus, this slideshow was born. We worked on it together to be sure it fit Ben's perspective. It was shown to his classmates while he wasn't present and seems to have been well received. I wanted other friends and family to get a chance to experience. I've changed some of the images for this site to remove identifying information.



Six weeks in NICU/ Early days at home


Hospitalized for Psuedomonas


Halloween costume, Baptism Renewal, Occupational Therapy

Occupational Therapy, Teaching a Family Friend to Sign, Last Portrait with Trach (capped)

Decannulation day testing out his voice, Early Days at home,  First meal by mouth

Trach with speaking valve, Glasses, Sad to see some of his medical equipment getting picked up


Neuromuscular, ENT, Orthotist


Splints/Braces/Leg Immobilizers/Shoe Inserts


Cough Assist and equipment, Vest with splints/braces, Vest


Progress after spine surgery


Sleep Study, Awaiting foot surgery, recovering from spine surgery

Sleep Study, Sick, Pulmonary Function Testing

EEG, Awaiting cholesteatoma surgery, Recovery gifts from classmates

Awaiting blood work, EEG, Sick

Nonchalant blood draw, lots of meds, new wheelchair from MDA loan closet






Swimming and floor hockey at MDA camp, Zoo

Throwing out first pitch at Busch Stadium

Power Soccer, Cure CMD 1/2 marathon, MDA camp group


Fundraising, Awaiting first pitch, interview with Mike Busch for telethon

4th of July Parade, Bike riding attempt, MDA telethon

MDA commercial, Trying out a hog at MDA camp, Fundraising with friend Ryan


Therapy swing made by Dad, Hippotherapy, Vision therapy

Favorite playground equipment, Physical Therapy, Hippotherapy


Hospital commercial, running a sprint for school, National Institute of Health

Homeschooling, Canoeing with Scouts, Percussion

Hanging with an ever bending willow tree, Carving, Pinewood Derby

Scout camping, favorite spot, breathing treatment/vest







Monday, October 13, 2014

The Key of G

This princess got sick, sick, sick. My virus morphed into a monster strain of misery and I wound up in bed, canceling as much as possible, for over 10 days. No sentence uttered without coughing commas. I went back to the doc this morning and got a few new drugs to try to kick the pneumonia habit for good. I'm still far from 100% but, I'm finally cooking dinner and I've decided I will be better tomorrow since I'm no longer contagious, likely, and Ben has some big appointments I really don't want to reschedule. I just hope the knife in my side will cooperate.

Jason has been superhuman through it all picking up most of my slack and spectacular friends have filled in the rest. They've helped with meals, car pools, child care, grocery runs, and morale and my favor scale made another dramatic swing tilting us deeper into, never able to repay territory.

Still, my comforter is soft, my lap top warm, these precious people are providing my sound track, and life is good.




Tuesday, October 7, 2014

Princesses Don't Be Sick

As much as I'd like to write about something other than health, it appears to be a subject I cannot escape. I suppose that's to be expected living in a family with two neuromuscular diseases, two cases of asthma with serious allergies, and one health care worker.

The much hyped enterovirus, well likely not that enterovirus, has hit our house. It was most likely picked up in a doctor's waiting room while I took Ben to one of his many recent appointments. I had the good sense to make him wear a mask.

Therefore I fell victim first and Ben and Gigi followed two days later. I still can't kick the cough but I'm certainly getting better. I have a new appreciation for what my kids go through when they're having breathing difficulties.

Before this crud descended upon us we were dealing with Ben's newest bad news. He's been pummeled by infection after infection since his surgery in August and all the usual tricks to clear his lungs hadn't worked. We finally relented and got a chest x-ray which was negative for pneumonia. However, the pulmunologist's brow remained furrowed as he pulled up a scan from last year to show me the progression. Ben's lungs are trapping air causing hyperinflation, similar to one with COPD. The likely culprit is aspiration from his weakening swallow. A swallow study was arranged quickly but had to be cancelled because of this drasted virus. Regular speech therapy is back on the books. I'll wait to speculate on what chronic aspiration means until we have proof.



But there is good news in this little mess, of course.

  • We've all handled this illness without emergent medical treatment so far. 
  • The Cards are performing promisingly in the playoffs again, providing ample entertainment for the ailing. 
  • I'm still on fire from my retreat which has honestly helped me through some of this suffering. I may finally understand the term, "offer it up." A well timed EWTN documentary about my favorite saint, St. Therese didn't hurt.
  • The weather looks fantastic out there.
  • I've lost five pounds.
  • Jason got home early today so he can play prince for awhile and take over monitoring breath sounds.
  • I'm all kinds of caught up on Words with Friends.
  • Jason and Alex have managed to evade these germs for 5 days so far. Even if they don't escape entirely, I'm grateful for the spacing. 
  • Gigi feels well enough to play pretend.


Gigi (in a sweet raspy pitch): But princesses don't be sick. And I'm a princess. And I'm sick. So I guess only me can be a princess and be sick. And you are a sick prince. Okay? Bes sick with me.



Saturday, September 27, 2014

Joy Comes Round

We're closing in on the geocakes with three to go, but we've hit a snag steeped in controversy. Our cake seeking friends planned on getting the last two far flung Illinois cakes before all meeting at the Arch for the final acquisition. However, two new local cakes were added post facto so there are now 252 official cakes and counting. I see no problem with getting the two extras and still ending with 250 at the Arch, but there's no reasoning with friends that met on the dorm's honors floor at college. Principles.

Ah well, we still have fun.

Celebrating Ellen.

We've had some family fun too with our usual fall traditions. Ben isn't up for participating in quite the same ways as before, but we're adjusting. Instead of going to the park grounds to watch the balloons launch at the annual Forest Park Balloon Race, we found a road on the outskirts and watched from a distance.







We took the wheelchair to the apple orchard and stayed close to the wagon drop off point to cut down on ambulation efforts.






I sought a shady spot for Ben while Gigi and Alex climbed and realized I'd found him comfort in the shadow of a willow tree. It reminded me of sweet Jack and his adopted motto of ever bending, never breaking like the willow tree and that reminded me of a conversation I had with Ben last May. We were on the way to school and heard a song about God turning our brokenness into beauty. I challenged Ben to be open to that idea, look for beauty in his struggles, and let God mend the brokenness. He replied, "Yeah, only remember? I'm not broken. I'm bent."

Bent, not broken. Got it.

Just hanging with Jesus
Balance is our word of the year. Priorities are shifting. We're being careful with Ben's reserves while respecting the needs of the family and striving for positive experiences. We stopped at a playground that had one of those handicapped swings with the high back that Ben loves. The playground was in great need of new ground cover so all the equipment was high off the ground. I asked Ben if he was a "The mulch is too low, or the swing is too high" kinda guy. He answered, "Neither matters to me when Mom is pushing the swing. It's just joy."