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May 24-30

This Week

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We kept up with periodic Xrays and Cooper wearing the neck brace until FEBRUARY.  (As a reminder, Cooper had surprise spinal decompression surgery in June 2019).  For the last few months in the brace, the neck brace was for “high risk” activities only, so he could sleep and do school work without it.  Unfortunately, that meant some days he got on the bus and all the way to school without the brace, because we had lost it in the house somewhere in the previous 12 hours.  But it was always found again and brought to school before recess!

The other wonderful thing that happened in February is that Cooper was matched with Velocity, a Skilled Companion service dog from Canine Companions for Independence!  She is just the sweetest.  She can help Cooper “tug” his socks off, ”cover” his legs when they ache at infusion, “get” things off the floor, “bring” the hockey puck after Cooper hits it into the yard, “push” drawers and doors closed, and we are training her to “find mom” so that she can come find me when Cooper is in his body cast this summer and needs mom.  She is the best snuggler, the slowest walker, and the hairiest creature I’ve ever encountered.  She gets to accompany us to Cooper’s weekly infusions, all the specialist appointments, and I believe she will accompany us to Delaware again this summer.  That’s a bit muddy right now, but I pray it will be resolved soon.

So, looking at back journal entires here, you’ll see we were preparing for Cooper’s lower extremity reconstruction this time last year.  Thankfully Dr. Mackenzie discovered Cooper’s severe spinal compression and we needed to address that ASAP instead.  Now we are back to where we were, preparing to reconstruct his hips (they are missing the hip shelves that keep the ball of the hip in the socket), put eight plates in his knees (so that they straighten as he grows) and align his ankles.  The combination of these two surgeries (right side June 9 and left side June 16) will leave Cooper in a spica cast for 7 weeks.  Then he’ll get the cast taken off and need to learn to walk again while going back to school (if in-person school even happens this year) most likely in a wheelchair and then a walker.  I understand that he’ll be able to walk again on his own by around Christmas.  But from then on, he will be free of the constant leg pain, and his gait will be better.  An overall quality of life improvement.  

The muddy part is that COVID hit.  Currently Nemours/Alfred I duPont Hospital for Children’s policy is that ONE parent gets to be admitted with a child admitted for surgery. No tag teaming to go somewhere else to rest, shower and come back.  No chance to let the dog out to pee or exercise.  THAT SUCKS.  And I get it - better safe than sorry.  We are hoping the policy changes before we go or that we get special dispensation.  Due to the visitation restrictions and COVID in general, we also decided that the only people traveling for the surgeries will be Cooper, myself, Brian and hopefully Velocity.

In other Cooper related news:
  • He got an eyeglass prescription that WORKS and he is wearing his glasses when he needs them!  This didn’t come without a lot of arm waving, ruffled brows, possibly a raised voice and angry emails on my part.  Advocating for your kid can be tough.  And even tougher when you don’t understand the terms, the biology and the science that makes it work.  
  • Cooper also picked up a pair of fabulous hearing aides that he wears all the time.  His hearing has fallen completely out of the “normal” hearing range.  He loves that they are green and blue and that they are Bluetooth enabled ear buds that he can listen to music with.
I’ll set up a meal train for when we return.  Returning!! That’s a foreign concept. We bought one way tickets there.  If there is anything we learned from last year, it’s to wait and see when and how we’ll be able to travel and THEN buy tickets (or a one way rental car) so we aren’t slapped with change fees and headaches just trying to get home with a kid who just had major surgery.

If you feel compelled to help with travel expenses (don’t worry - we’ve hit his out of pocket max the first week in January!! These two surgeries are FREE!) We are humbled to accept GrubHub gift cards, Hilton points (to help pay for our lodging at the Extended Stay near the Hospital), or Venmo (@Christine-Tippett)/ cash/ PayPal for food, car and more travel (home from this surgery as well as another round trip to get he cast off).

As always, I’ll keep you up to date here on Caring Bridge.  Thank you for your love, prayers, support, bottles of wine, meals, donations, laughs, shoulders to cry on, texts, emails and camaraderie during our journey.  It’s far from over. 

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