The “Summer of 69” life lessons or so it seems

2013-05-17 13:44:46 by Sarah Sanford, Patient Family, as posted on the blog.

“It was the summer of 69” is how the Bryan Adams’ song goes.  Well, in the wild world of Janey Bug and Baby Jude, it has been the summer of 69 life lessons, or at least it feels like it.

Below are some of the best ones so far (summer isn’t over yet):

  1. Birds of a feather flock together.  Baby Jude is lucky enough to be invited to Akron Children’s NeuroDevelopmental Science Center’s annual Cerebral Palsy picnic.  Jane, Vance and I are lucky enough to tag along. Super cool event - who can argue with face painting, Dunk a Doc, pizza, the Doggie Brigade, vendor exhibits, and seeing all of your kiddo’s docs in a picnic-like setting?For me, it’s also a chance to see so many of the families Baby Jude and I have come to know over the past 2 years just having a good time, not waiting for the next therapy session or the EEG lab.  It’s a chance to go to Canal Park for an “on the house” Aero’s game where all of the logistics have been taken care of for the CP patients and their families.  Taken care of by the NeuroDevelopmental Science Center at Akron Children’s Hospital.This year, as Baby Jude is getting older and is more aware of other kids and the things around him,  the picnic was a chance to see him where 99.9% of the other kids had on the exact same ankle-foot orthosis (AFO) brace as him. And for him to see everyone else’s AFOs.

    I swear, he noticed. On some level. Some kids had much more involved braces than his, wheelchairs vs. his “big boy” stroller, and some kids appeared even less affected by CP than Baby Jude.  But it was a very special chance to see him among peers who have much in common, even down to coordinating footwear.  I love the CP Picnic – thank you, Akron Children’s Hospital.

  2. Speaking of AFOs, they are not the end of the world.  Baby Jude was fitted for and is now wearing custom made ankle-foot braces to support his foot arch and pull out his curled toes. The first week was a veritable hell – screaming when I put them on, walking like Frankenstein (the ensemble comes complete with giant orthopedic sneakers) and a very unsteady gait.
    Fast forward a few weeks, he glides through life in those little braces and big old shoes with the smoothness of a gazelle.  They are no big deal at all.  Keeping them out of the line of vision of Atticus, the curious puppy, is the biggest issue.  All hail the maker of the AFO.

  3. The price of new elementary school uniforms is bananas. And as much as I adore Jane’s school, a dress code requiring plain white shirts for kindergarten seems like nothing more than the school being in cahoots with Tide and Clorox – getting a kick back for what is sure to be a spike in revenue come the ringing of the school bell.

  4. Expressive communication bursts come when you least expect ‘em.  Baby Jude has been behind in expressive communication since day 1.  But he has made incredible progress since opening up his ears (kinda hard to learn to talk when ya can’t hear a darned thing), developing his vision (kinda hard to form an opinion on people and things you can’t see) and has been in speech therapyworking hard.So our dog made a funny “coughing” sound and Baby Jude pipes up, “uh-oh choking!” You can’t tell that this kid has dysphagia and hears me say that exact phrase (or something close, mine might be a tad more colorful) 9,754 times a week.  See, expressive communication when ya least expect it.

  5. A 2ndpair of eyes never hurt anything. This was a hard lesson for me to embrace. Baby Jude has an incredible team of people in his medical, visual, therapeutic and developmental life.  All of the pros who work with him are incredible, very in tune with him and are wicked smart. But every once in a while, I get a feeling it couldn’t hurt to ask a different doc a question or two. For whatever reason, I always hesitated. Didn’t want to upset the apple cart, I suppose. Finally, some of the others on Jude’s team echoed my observations about some changes/regressions in Baby Jude. So I bit the bullet and got our very first 2nd opinion. This additional neuro doc sees what has been noted with regression. He has additional concerns (those I’m not willing to think about yet - my “parental level of acceptance” isn’t there and isn’t required. Yet.)

  6. You know you’ve been at the hospital too many times when Baby Jude’s fave anesthesiologist sees us in Akron Children’s PJs strolling the halls and says, “oh, Big Baby Jude is in PJ’s.  I guess I’ll see you in surgery soon?”
    Dr. K has done an expert job each and every time he has knocked out Baby Jude, and this last time was nothing short of an expert job as well. I also think it’s cute that he calls him “big Baby Jude.”  Maybe it’s time for me to drop the Baby part soon?

    Jude's AFOs

  7. You also know you’ve been to the hospital too many times when while in a recovery room, another of Baby Jude’s fave docs overhears me singing the ABC’s to Jude, recognizes my voice and peeks in to say, “What are you two doing here again?”  Voice recognition in a pediatric hospital = frequent flyer.

  8. Was it "Rock ‘N Roll High School" or "Rock ‘N Roll Kindergarten?" Because Janey is a major music fan at 5.  She has her own vinyl record player in the playroom and spins LPs like a pro. Her musical taste is eclectic. Her favorite music, in Janey’s words: “Cats in the Cradle, Get Up Stand Up, and Katy Perry isn’t bad.” Love that kid.

  9. Surgical discharge instructions that include the terms “bed rest/limited activity” for a 2˝ year old do not mix. Enough said.

  10. EEG glue and coarse hair also don’t mix. It takes forever to get out. Even with baby oil, olive oil, a pick, a comb, and prayers for divine intervention. EEG glue is no friend to an afro. It may still be in there at Christmas.

  11. Take time to stay grateful, prayerful and hopeful. Because if I learned one lesson (only 58 lessons shy of the song) this summer, it’s that time flies. And before I knew it we went from the first dips in the kiddie pool and hospital stuff for Jude to scrounging to get Jane ready for kindergarten. Or should kindergarten be getting ready for Jane?

Grateful, Prayerful & Hopeful.

Read more about Baby Jude in the rest of Sarah’s blog posts.

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