(Specialized) Equipment

There are lots of neat toys and equipment that babies seem to enjoy...but that our therapists have warned us are not appropriate for someone with issues like Elena.

Early Development--Sitting, Standing

The "bad" toys are the ones where Elena was encouraged to be on her toes, such as:

Door-jam jumper/"jumperoo" type harnesses. E didn't "jump"--but it encourages being on her toes
Exersaucers. Encourages being on toes--we'd use it if we wanted her upright and needed our two hands for something else, but never for long periods of playtime


Ideal toys for Elena were ones that would keep her attention while we would try to do sorts of "therapy-play":

Duplo legos she could pull apart. Uses both hands to pull, develops strength and coordination
Containers of all types. Put/grab items across body to use different hands, develop core strength
Box with latches and locks. Great for keeping attention while working on standing/balance
Exercise ball. For stretching, working on protective responses--side, forward, back--while sitting on the ball. If able to stand, can push ball back and forth
Kitchen utensiles (not sharp ones, obviously). Shiny, tactile, attention-grabbing objects that have some weight to them and can be LOUD.
Giant plastic storage box filled with dry beans. This has been one of our BEST investments. Before E could sit independently she could be propped up inside the box and play with the beans using her hands, working on fine motor skills. We have 4 types of dry beans of different colors and sizes to encourage sorting and counting. Two years later, we still have the same box and beans--but she plays in and out of the box. All her friends LOVE IT. Easy to pick up, cats keep out of it, and so far, hasn't needed replacing.

Other: Straw cups instead of sippy cups. Elena never took to a sippy cup b/c she didn't lean her head back well to drink from it (weak core). The straw made it easier to drink, while working on her mouth muscles for speech development ("oooo" sound was particularly late; using a straw can help)

Later Development--Standing, Stepping

Bad
Dolly stroller, flimsy-type. Moves WAY to fast, E kept falling on her face.

Good
Pottery Barn Mini-Zooper Stroller. Has a large wheel base so it can be pushed over different surfaces, including wood floor/molding/carpet/grass/small gravel without wheels getting messed up. We put canned goods in the bottom portion of the stroller to make it harder to turn to work her core muscles. Unfortunately this stroller costs about 3x what a flimsy stroller does.
Walker. Elena uses a forward walker--it took months for her to take to it, and we've nearly outgrown it's use (she runs with it when she can, which means she's on her toes too much and pops out of her AFOs). Great for more rugged terrain, where she can't run.
Loftstrand (wrist) braces. We are currently learnign how to use these. She can stand taller than ever with them when she walks, which is great.
Pediatric treadmill. I am currently having side supports constructed so we can use this, ideally daily.
AFOs. Elena cannot walk or stand upright without them. They allow her feet to stand flat(ter) and provide a good foundation for balance. She wears them any time she is not sleeping.
Feeding chair. We had a highchair, but it took up SO much kitchen space and was too large/unsupportive for Elena's core we had to find an alternative. I like the Fisher-price travel highchair--it straps to a regular chair, is adjustable height, and has a smaller seat base so she can't slouch side-to-side as easily. We also put a stool under her feet to help her posture. It's also WAY cheaper than a traditional highchair.
Play chairs. Finding a chair where Elena could sit in a 90-90-90 position (flat feet, knees at 90 degrees, back straight) was a REAL challenge. Elena needed a chair of the right height that had a back and side support. I bought a Chairrie off Ebay that I had measured to fit her. She's a little big for it now, but it was a good investment. I also bought a chair off the classifieds from a mother of a special-needs child with the same issues...they had found a chair they liked and cut off the legs to be the right height. Now that she is stronger in her core and taller, more chairs are appropriate and she can use benches without backs to them.
Play table. We needed something that she could sit/stand upright and NOT lean on for support. This was difficult at first, as many toys she took to were too short for her to stand up and play with WHILE standing on flat feet. She has a craft table in her playroom and also likes to play at the coffee table. This has been less of a problem now that she stands up well.
Kettler Trike. This tricycle is a great size for small children, room to grow, has a seat belt and a push bar. Make sure to buy one that has a non-coasting front wheel. I had to call the company to get one and switch it out (not cheap). We strap E's shoes to the pedals with velcro ties, and she gets her legs pumping while we push. She now tries to turn the wheel herself.
Mini beanbags. Good for catching and throwing while doing standing drills. If balance is pretty good, can work on putting a beanbag on different parts of the body. Now we can use balls, but beanbags were a great start to this drill, b/c they wouldn't move when she'd try to pick them up.

Care providers for Elena

This is a short/ongoing list of providers for Elena. Different places have different names for some of the programs or positions, but these are the ones we have:

Dr. Josh—delivered E.

NICU Nurses—Kitty, Nicole, Paula, Esther, Joe (to name a few favorites)

Anne Peery—lactation consultant

Brenda XXX—my mental health counselor

Dr. Ashby Robert Trundle—pediatrician

Dr. Blackman—developmental pediatrician at KCRC

Dr. Houlihan—E’s developmental pediatrician at KCRC (post-CP diagnosis)

Dr. Mark Abel—E’s pediatric orthopaedic doctor

Theresa McCullough—main PT (EI, private)

Teresa Andrews—sub PT (EI, private)

Jen XXX—sub PT (private)

Sarah James—main speech T (EI, private)

Elayne Fitzgerald—Horses As Healers, therapeutic horseback riding

Cecily, Fun Brian—Little Gym teachers

Bryan Fuller—orthotist

Edward Parelhoff—pediatric ophthamologist

Jeff Elias—neurosurgeon

Sherry Lord—Public School PT

Maureen Tilley—Public School SpT

Judy Spellman—Public School OT (currently not in use, but will be)

IEP coordinator (used to be Neil) Cathy Wojik

Delores Alt (now Cassandra)—Care Advantage Plus rep (Medicaid provider)

Kelly Peters—EI coordinator (lost after we left EI)

Dave Carmines—gait analysis engineer

Patty Payne—PT at KCRC (gait analysis center)

Duane Bickers—dentist

Geisha Goodman—Bright Stars teacher (public school program)

Ruth XX—Bright Stars assistant

Ariel—PE Teacher (public school)

Beth—PE assistant (public school)

Annette--nanny (of course)

Susan XXX—RN, case worker for Southern Health (my/E's primary insurance)