Tuesday, July 2, 2013

We came. She walked. She kicked their butts.

When we arrived in Philly we had high hopes that what we already knew to be true would shine through in front of the right people…and it did.
This will for sure be a more medical update then entertaining life story post…
First Challenge-Developmental exam-During this testing phase CeCe ran the cognitive gauntlet as they tested her brain’s abilities.  Remember that children with sb can have learning disabilities in both math and reading and reading comprehension. 

Essentially the Bayley Scales of Infant Motor Development test was used to evaluate her skills.  A quick summation of that test—“She was asked to do a number of activities to see if your child’s thinking, language, and moving (sitting, walking) skills are similar to children his or her own age. Some of the activities your child was asked to perform may have seemed very easy while some of the activities may have seemed very hard.  No child is expected to do well on every activity.  You may also have been asked questions about your child’s social skills (such as expressing emotions or talking with others) and behaviors (such as playing with others or dressing). These questions help us find out your child’s range of skills. No child is expected to successfully show every skill.”

First appointment-Day 1-Cognititve

Here’s how our girl rolled….
·         Colors-Knew ‘em
·         Gender Roles-Got ‘em
·         “-ing” verbs, opposites-Nailed ‘em
·         Pronouns, Plurals, Possessives, Plural Possessives-pCheck, pCheck , pCheck! (The “p”s are silent). J
Moving on…
·         Finish the picture-having her brain “fill-in” missing lines in a stick picture —completed all of them
·         Heavy & light, size & proportion—all by looking at flip book pictures-they were weighed, measured and laid to rest
·         Puzzles-finished them before all the instructions were complete!
·         Tower building-7-8 tall cubes tall and 12 in a straight line and on the diagonal
·         Concepts of in front, behind, and to the side-busted all of them

A little bit tougher…
·         Threading a string of beads into a test tube-she tried to STUFF them in J
·         Drawing/Mimicking a straight line-She scribble/scrabbled.  They asked me about how she crawled when she did this.  She crawled with her thumbs tucked under, always…even today if she does it.  The lack of strengthen of the fingers when a person crawls with their hands flat out they thins caused this…but who cares, right?  She’ll learn a straight line when she’s good and ready
·         Drawing a circle inside another circle-See reasoning above.
·         Building a bridge out of blocks
The evaluator said that most of her skills on are a four year old level…she measured at her age level except for “drafting” (making a straight vertical or horizontal line with a pencil as explained earlier due to her crawling technique) for which she tested below her age.

Second  appointment-Day 1-Physical

Next up we saw a very militant PT/OT…a woman of significant years that has obviously heard and seen it all.  Chit chat, discussion of the weather and extraneous comments of any kind are all on her prohibited list.  All business all the time.  She came upon us very abruptly and when I asked if she remembered us, her response was “Well, I remember her (CeCe)!” Alrighty then…DISMISSED!  Moving on…The first thing CeCe did for her was run…around and around and around.  HA!

They filmed this next part to be sure that all the kids’ evaluations are the same.
·         She is 36.25 inches tall-which puts her smack on the 50th percentile
·         She is 29ish pounds-which puts her on the 40th percentile-so, kind of a shrimp but properly proportioned

Dr. “Feelgood” had her…
·         Lay down on the floor on her back, roll over and push to standing
·         Had her lay down on her back and kick as hard as she could against Dr. F’s hands-full strength!
·         Checked her “wing-span” ration to height (to check that she is proportionate)-All good
·         Noted a Kyphosis (a word I had NEVER heard before and thought was related to scoliosis, it’s not) .  It just means she has a slight curvature at the top of her back (like a little hump) that she does to help keep her more stable and balanced  when she walks.
·         Noted a curvature of the knee when she walks (she stamps when she walks with a bent knee and resembles Frankenstein when you ask her to walk with a straight knee).
·         Crawl, tossed her about to check her reflexes, used the hammer to check knees, and Achilles response.
·         Poked and prodded her bottom and at all angles of her feet to see with a splintered tongue depressor while she was distracted with a bell (that CeCe broke…whoops!).  There HAS to be a more scientific way to test these areas other than this, right?

In summary, she basically said that she is functioning at the S1 level (her file says she’s L4-L5).  No praise from this doc…just observations.  Whatevs.

Last appointment-Day 2-Kidneys and Urodynamics

Let’s just keep this simple-Clean, Clear and no change!  Whoop whoop!  LOVE these two docs and wish we had them locally.  They even gave her a cathing doll (complete with big blue eyes and wild blond hair) for her to take home and practice on.  She loves this little doll that’s just like her and has named her Cecilia…love it!

And, we decided to make this trip more than just all business.  We went a few days early and checked out Sesame Place (Disney World for 3-7 year olds).  We hit the hotel pools, saw the Liberty Bell, without having to wait in line, road the Duck Tour around the Philly landmarks and INTO the river, and enjoyed a cheesesteak.  A great family vacation actually!

Thank you for all your prayers and keep ‘em coming…you can see just what the power of prayer can do!

And please don't forget the Walk N Roll for sb is coming up quickly...October 5, 2013!!

Please donate here!  We need your support!


  1. Hi Jen, This is Tiffany. Wahoooo, go CeCe. So happy to hear the wonderful news. She is a little rock star. Thank you so much for sharing on your blog. I am so familiar now with the testing processes and expecting great results but always being prepared for anything in the back of your mind. So glad you guys had a great trip to CHOP. I would love to get together again soon.

  2. Woo. She’s a rockstar. I hate evaluations and assessments but they are necessary to prove that our situation has not changed and our son still needs some help and assistance. Glad you had a great trip.