A few lessons from Baby Jude and Jane

2011-08-02 12:25:48 by Sarah Sanford, Patient Family, as posted on the inside.akronchildrens.org blog.

I’ve said it before and I’ll say it again. My kids humble me daily. They teach me far more than I could ever teach them. Jane is wicked smart. It’s a blessing and a curse.  Her wit is quick, and her heart is painfully large and endearing and never lets go.

Baby Jude. In the year and a half we have been mom and son, the affect he has had on me is indescribable.  He is sweet as pie.  He is tough as nails.  He is calm as a cool breeze on a warm day.

I know, though, that there is a hurricane of brilliance inside, just waiting for his time to bring the storm. He has taught me how to keep moving forward, how to see a challenge in our path - not to give it too much credence but not to discount it either. Merely to respect the challenge for what it is, to look for tools to help us and then kick the crap out of said challenge.  Then we smile and move onto the next challenge.

Below are some practical lessons I have noted in the past few weeks.

Baby Jude is more resilient than most. So far in June, he has smiled through a schedule that included follow ups at Akron Children’s NeuroDevelopmental Science Center, Craniofacial and ENT, as well as gastroenterology.  He had his weekly physical therapy, occupational therapy, speech, and low vision therapies, and days at the Summit DD. The real kicker was a gastro incident that took us to the ER. I kindly refer to it as PoopGate 2011. Baby Jude keeps a very tight schedule.  And, apparently, a very tight intestinal tract.  Yikes.  It’s a work in progress.

Jude’s ears...they are the pits. He can’t win for losing.  Nothing major, but it seems like “I take 2 steps forward, I take 2 steps back.” My family has a hard time leaving Dr. Nelson’s office in ENT without a surgery date. God bless him for putting up with our dual J & J  visits. They are active, to say the least.  Adenoids have been evicted and ear tubes replaced this week. Completely easy breezy, lemon peezy surgery. Except if you are Baby Jude. If there is a 1 in a million minor complication to be had, he finds his way to it. Like with the last set of tubes, he had excessive bleeding and granulated tissue that had to be removed a handful of times. Gross visual, I realize, but it’s the facts.

Jane will never compete for a black belt. We took a stab at toddler Tae Kwon Do.  Her 40-year-old father, who hasn’t hit a treadmill in a while (sorry V!), got a better workout by holding her through the lessons. However, I came up with a “competitive” home sport: trike versus gait trainer - Sanford style. Jane is an expert at racing Jude in his gait trainer down the driveway.  Baby Jude is getting pretty good with that trainer too.  Jane throws a race every now and again.  It’s no self defense Tae Kwon Do, but it sure is sweet to see her give in to Baby Jude and his tortoise pace without being asked to. Love.

Call to schedule well checks. I need to remember that although Baby Jude is seen by 9,654 specialists/therapists, he needs Well Baby checks at the good old-fashioned pediatrician. He needs 18 month old vaccines by the end of the month. Got it scheduled. It’s easy to overlook the obvious, I suppose.

It’s a good day when a specialist doesn’t need to schedule another follow up. Baby Jude’s head is lumpy but it’s as good as it is going to get. It’s fairly awesomely shaped now. Thanks to Dr. Murthy and Candace (and Hanger Prosthetics) at Akron Children’s Craniofacial Center. Dr. Murthy checked him out and took some measurements of the old noggin and reviewed all of his progress. He was thrilled to report that Jude’s once severe plagiocephaly (flattened head syndrome) is almost immeasurable. He went from 17 mm to 2mm in difference.  His midline divot is “filling in nicely.” All thanks to Dr. M and his folks. Baby Jude graduates from Dr. Murthy’s expert hands, barring any complications. Now it is time to get that fro of Jude’s kicked in to really round out the remaining lumps & bumps. (I am not kidding. The kid could use some hair. Baby Don’t Be Bald ain’t getting the job done.)

Maybe a vet as a career choice? For a couple of weeks we had a redbreast robin’s nest attached to the wreath on our front door. Jane observed the birds faithfully. It was science lesson time the day they took flight. Teachable moments about nature, right? Then we took a neighborhood stroll. Jane spotted a similar robin and shouts, “Look, Sarah, it’s a red breastfeeding robin.” In my defense, her prior babysitter discretely nursed her own children. I have always taught her anatomically correct body parts/functions etc.  And Jane forgets nothing.  Oy.

Smelling good people is a talent. Baby Jude has it. He is a big Dr. Mosher fan.  So am I.  She is one of the most patient and insightful physicians this side of the Mississippi. From toddler siblings attempting escape, photographer accompaniment and me faxing over a medical release for Petie the Pony rides at Victory Gallop, we are grateful, Dr. Mosher. After the Baby Jude sniff test, as if every one of her patients doesn’t already know, Dr. Mosher is good people!

Tenacity, wrapped in chubby cheeked smiles is priceless. Baby Jude works harder than most to gain less than a lot. It takes him longer. But he does it with a smile. Sometimes a grunt or a groan escape him. As of late, maybe even a temper tantrum will erupt when he is really ticked. (The 2 milestones he has hit on time are teething and tantrums. Oy)

All kidding aside, the child moves himself forward with a subtle tenacity.  He moves himself forward with a goal he can’t yet articulate, but I can tell is there. I can see it in his eyes. He moves himself forward at his own pace, on his own time. Bottom line,  Baby Jude is tenacious. And Baby Jude has such sweet, determined love in his heart, that even when he may appear tired from having to push himself forward, our Baby Jude smiles. A determined, tenacious, HUGE smile.

Grateful, Prayerful & Hopeful.

Read more about Baby Jude and Jane from the rest of Sarah’s blog, Hey Jude!.

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