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I’m feeling it.

Kelsey is sick.

Ben is sick.

Kelsey should be having two hours of therapy six days a week.  Instead she’s fighting the flu.  Dave has an especially busy work week.  Snow is coming which means school will most-likely be affected throughout the week. The load is heavy and I’m feeling it.

I’m forced to wonder if leaving Kennedy Krieger was the right decision.  It was the plan for months. And although it wasn’t the right place for Kelsey, as far as we were concerned, she would have gotten the therapy she needed.  Yeah I would be burdened to share a room with a stranger in a cramped room but other burdens may not have presented themselves.  I’m pretty confident she did not catch the flu virus until we were back home at school and therapy.

Illnesses aside, she can’t walk.  And I’m aching to be back to our normal.  I’m praying, getting time to myself now and then, exercising (occasionally), and drinking the wine.  But none of that is helping.  By leaving the hospital, we put the burden of rehabilitation on ourselves.  The load is heavy and I’m feeling it.

This life we live is rich and beautiful but it’s also hard.  Brutal, even. It’s a Brutiful Life,(Melton, 2013). Writing often helps me to cope which brought me here today. I know this is a dark time and the light will come again.  But for now I’ll just try to trust that our instincts were right and that medicine will make my family stop hurting so that we can start thriving again.

Thanks for listening.  More than gifts and meals, it’s what helps the most.

Gotta run…someone needs me.  Again.

Our Quick Stint in Rehab

Welp. We graduated. After a mere 12 hours, we could tell that we might not need the intensity that KKI provides. This morning we asked if an outpatient scenario was possible. For a multitude of reasons including: She has no pain. She’s not on any pain meds. She’s “only” receiving PT and OT. We live close enough to drive KKI everyday. We didn’t see why it was necessary to spend all day and night at the hospital for a month. So after consulting doctors, therapists and social workers, who all agreed that outpatient therapy was a sound and safe choice, we were discharged. After 36 hours. The PT in charge said “we never see kids climb steps on their first day like she did!” This puts more on our plate at home but I’m up to the challenge. Thankfully Kelsey’s school and private therapists are rock stars and will, I have no doubt, have her in tip top shape in no time. She passed out immediately as sleep was something she gets less of at the hospital. We are all happy at home again. Thank you for all your prayers!!! Boy did they work!!!!

Hip Happenings

Well, we’re nearing the end of the second chapter of Kelsey’s surgery and recovery.  She’s done very, very well for the six weeks we’ve been home.  Actually we’ve all handled it very well, now that I mention it.

Kelsey’s spirit has never been better.  This was what I was most worried about.  That the surgery and casting and positioning would really mess with her spunk.  It didn’t.  Kids are so resilient, it’s crazy!  She maybe asked to take the “cast” off three times.  The first couple weeks were hard because she couldn’t sit up past 40 degrees, but since then she’s gone to school, learned to scooch on the floor, and even how to roll herself around in her bike (aka wheelchair).  We’ve figured out how to do Target runs, how to eat out at restaurants (corner booths are perfect!), and how to wash her hair in the bike.  She’s also grown and developed in many ways despite this setback.  She’s started to play pretend with dolls.  She’s talking in longer sentences.  And she’s never been cuter.

It wasn’t all fun and games, though.  Sleeping was HARD for her.  She, like any human, likes to change positions while she sleeps.  But with the immobilizing pillow, that is a no-can-do.  There was nothing we could do for her at 12, 3 and 5AM when she woke up screaming bloody murder.  We couldn’t give her what she wanted–to roll over.  She didn’t want a hug.  She didn’t want a drink.  She just wanted to snuggle up with her pillow and sleep.  Trying to help her made it worse so we ended up doing a lot of “crying-it-out.”  That part was/is super sad.  Baths were not allowed after I blogged about them in my last post but thanks for the ideas!  This might be what I am most looking forward to after the cast comes off–giving her a bath. The sponge baths aren’t cutting it any more…girlfriend is stinky!

The “bike” is also a pain.  Kelsey can’t ride the bus because her wheelchair is not safe for travel.  Which is painfully ironic because she rides a special needs bus that has a wheelchair lift.  The trips to and from school became my full time job.  The chair is heavy and awkward and it definitely makes me appreciate and miss her walker.  I wore my perspectacles in a new way these last couple weeks.  The wheelchair got us a lot of pity glances but I noticed them much more when her cast was covered with a blanket on cold days, than if it was exposed.  I assume that’s because people feel better knowing the cast is temporary? Regardless, at this point in my child-rearing life, I don’t give an eff about the looks of pity. Ain’t nobody got time to worry about that when my To-Do List of worries is a mile long.

Hopefully the surgery and casting has done what it was supposed to do.  The cast or pillow took a good bit of effort itself while we’ve been at home.  Because it was “just” straps, I had to adjust it on a regular basis because it kept slipping down her legs.  Fun times.

Her legs are super dry from being wrapped up and her feet are even dryer!  It’s crazy considering they aren’t even casted.  It’s like she is peeling from a sunburn! So weird.

Ben was a trooper during the first two parts of this ordeal too.  He’s so used to “our normal” that this really didn’t phase him.  Kelsey had a walker and now she has a wheelchair.  No biggy.  He’s sweet with her one minute and annoyed with her the next…just like any big bro/little sis relationship.

As for Dave and me, we’ve hung in there.  Poor Dave was sick for most of February with a cold, the flu and strep throat so he and Kelsey convalesced together. We took the opportunity of the sick-wheelchair-winter weather trifecta to get the new house organized and decorated the way we want it to be.  About seven times a day I give thanks to our house. It’s just a dream.

And next up is part three of the hip journey.  On Thursday, we will take Kelsey to Hopkins to meet with her surgeon for an X-Ray and exam before walking across the street to check in at the Kennedy Krieger Institute.  Hopefully her hips are healed and ready for some serious exercising action.

Today a friend at church asked how she could help us during this next phase and I just don’t know.  I am very familiar with hospital stays but I don’t know rehab. Plus the shared room (for a month!) should prove very interesting.  I don’t know what to expect or how to prepare.  We will just have to wait and see, I guess.  If you need something to pray for, pray for us to get a single room!!  😉 Ha! Nah, probably better to pray for a quicker stay than we expect, that Kelsey will be walking better than ever, and that we have determined and happy spirits for all of us while our life is upside down for a bit.  I’ll try and update how things are going as much as possible in the coming weeks.

Continued thanks for those prayers, meals, toys, messages, and bottles of wine. Our survival has definitely been possible because of all the support you’ve all given us.  Thank you, thank you, thank you!