The new top 10 things I've learned, courtesy of J&J

2013-09-13 16:04:13 by Sarah Sanford, Mom Blogger, as posted on the inside.akronchildrens.org blog.

1) When a doc performing an exam and ultrasound of your boy’s belly says, “Wow, you weren’t kidding about his constipation issue, were you?” it’s not a good thing.  New medication added, follow up with gastroenterologist TBD.  See you soon Dr. Fyda and/or Emergency Department.  Poop Gate 2012 is clearly underway!

2) Insurance paperwork, appeals procedures for Medicaid applications, and Bureau for Children with Medical Handicaps are a full-time job.  Plus some.  Thankfully, I have Noelle at the NeuroDevelopmental Science Center to help me with all of Baby Jude’s paperwork.  See, I told you, Akron Children’s Hospital is the best.

3) Receiving your very precocious daughter’s kindergarten acceptance letter in the mail (after some school speculation that she might be a little too chatty to make the cut) is more exciting than receiving the Publisher’s Clearing House Sweepstakes' big check.  At least I think so.  Granted, I have never won the sweepstakes.  But I’ll take the kindergarten win.  Though, I still could use the big check.

4) The Rubber band Effect - it’s what Baby Jude’s very smart early intervention specialist calls the backslide in his development.  For what feels like a long time, Baby Jude was a ROCK STAR. He was catching up on his gross motor, fine motor and visual skills faster than you can say jack rabbit.

Expressive language disorder?  What’s that? Baby Jude was gaining words by the day.  Then we hit a plateau.  I had heard and read the term before - he is leveling off.  Maybe his brain can only take so much. Maybe he is tired of all the hard work. Maybe he needs a break from all of his awesomeness.

Jude’s Summit DD/Cleveland Sight Center team and I met to discuss.  It’s clear he is struggling. His SPD (sensory processing disorder) seems to be more prevalent, his transitions in the classroom are more difficult, his body tremors have increased, and his seizure like activity is markedly up.  We all agree that we have noted it, and so has his therapy team at Akron Children's.

Hence, the Rubber band Effect. Rubber bands can only stretch so far before they snap back into original form or break.  Baby Jude didn’t allow himself to break. He slowed himself down and snapped back into some old habits.  He needs to rest his personal rubber band and regroup.

His Akron Children’s team, Summit DD team, Help Me Grow Tim and Cleveland Sight Center Brenda and I will all be waiting when he is ready to get back at it.

5) Watching your child struggle gives you wrinkles.  I am 37 years old and feel 67.  When Baby Jude has an “off day” or is terribly shaky or chokes a bit, I swear I age at least 6 months.  There should be a Congressional Act that supports the unadulterated and free use of Botox, hair dye and any other anti-aging serum that is on the market for parents with kids with disabilities and special needs. I’m kidding.  Kind of.

6) There is a family plan for all of us.  I am thoroughly convinced that when God, the universe, Mother Nature or whomever you believe in builds your family and knows that one child will have a challenge or two, they instill a certain level of understanding, maturity and patience in the sibling of your challenged child.

Jane is that sibling child.  She is ONLY patient with Baby Jude.  She is protective, nurturing, puts up with WAY more hustle and bustle of doctor appointments, therapy appointments, “oh crap, Jude’s choking” than she should have to for her age.

With Baby Jude, Jane is loving, doting, caring, and wicked smart.  In our case, I believe that God made Jane exactly who she is so that she can be the special sibling that Baby Jude needs now and who an older Jude will need in the future.

7) A day or two can seem like a lifetime.  When you receive your “Extended EEG” paperwork in the mail and, upon review, you remember that your 2 year old will be tethered to a wall by 26 electrodes glued to his head, it’s time to shop.  Because you are going to need to keep him entertained for said extended period of time.

Looks like I am hitting up the coloring book, baby toy aisle at Marc’s sometime soon.  Our mini-vacation at Akron Children’s Hospital is scheduled for the end of the month.

8) We are family.  Just when you are ready to ring your husband’s neck for something he did, or more than likely, forgot to do. . . you hear Sister Sledge (on vinyl no less) pumping from the rec room and walk in to see him dancing with your little girl.  She is giggling.  He is crying joyful tears.  And for that couple of minutes there isn’t another place you’d rather be, except watching this dance.

Vance is good like that. He can get himself out of a pinch with an artfully chosen LP most days of the week.  Jane falls for it hook, line and  sinker, too.

9) Children can handle many doctor appointments in a week, maybe better than moms.  In one day last week, Baby Jude had occupational therapy (which he loves, as he loves Miss Angela), a urology appointment, an ENT follow up, and his quarterly physiatry appointment with Dr. Mosher.

He juggled it well. He participated decently in OT, fought a little in urology (who wouldn’t?), and loved on Dr. M in physiatry, even impressing her some. Jude rounded out the week with his ENT appointment with Dr. Nelson, fairly well behaved except for the “say AHHHHH" part.  All in all, he fared well.

Jude’s team at Akron Children's Hospital is amazing and we are lucky to have them.  And I am lucky that they give me appointment cards and reminder calls, because as I said, sometimes he handles the schedule better than I do.

10) Almost 5 year olds say the darndest things.  And they make you wonder if they mean what they say.

The other afternoon, I accidentally broke a bouncy ball that the kids and I were playing with.  Later that night, I hear her say to Vance, “Mom busted my ball.  ACTUALLY, Sarah is always busting balls.” Pretty sure Vance almost passed out.  Laughing and ultimately agreeing with her.  Oy.

PS - I am buying her a new ball to replace my faux pas.

As always, we are Grateful, Prayerful & Hopeful.

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




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