Our Story
Maura - our four yr old - has delays. The first sign was that she sat up late and crawled late - but then she seemed to catch up. The other three were all walking by 9 1/2 months so I wasn't certain about what "normal" was. But at 13 months, she was pulling up and such. The doctor noted she had some low muscle tone and told me to bring Maura back at 15 months if she wasn't walking by then.
Oh, I can laugh about that now.
So at 15 months, we bring the non-walker but otherwise seemingly normal Maura in. We left with paperwork for blood tests and suggestions for therapy.
At 16 months she started Early Intervention, and was diagnosed with gross and fine motor skill delays, plus speech/language delays.
At almost 23 months, she finally got up the nerve to walk. She brought new meaning to baby steps - she was the slowest walker ever, but we were happy with that.
She had been using shoe inserts to keep her feet straight, as her feet roll in, but we've since moved up to AFO's - ankle foot orthotics - I refer to them as ankle braces b/c that's what they are and people get that. They made a world of different to how fast she moves and how little she falls over now (without them, she has the balance of a little drunk, lol!)
She also is supposed to wear glasses, as her eyes cross here and there due to far-sightedness. Most of the time now, she'll wear them, but they come off when she's tired and sometimes get lost. Like right at this moment.
Her speech and language is the area she's most severely behind in - she has the language skills of a 16-24 month old, depending on category. She does get her point across though and is VERY self-sufficient - almost too much. Her gross motor skills have improved the most (she's at a 3-31/2 yr old point) and the fine motor skills are just behind those.
To put it technically, she has global delays (speech, language, fine/gross motor skills - socially she's pretty on par), strabismus and pseudo-strabismus (meaning sometimes her eyes look crossed and they are, sometimes they look crossed but they aren't), hypotonia (aka low muscle tone - she's VERY flexible), flexible flat feet, and Childhood Apraxia of Speech (which means you can't say words correctly even though you know how to and your mouth can form them - it just comes out wrong.)
We've tested for Down's Syndrome, autism, have had a karyotype and micro array done (where they look at the genes), an MRI, tested for Rett Syndrome and Fragile X, lead, anemia, thyroid, hearing, metabolic disorders, blah blah blah. All come back normal. We have the pediatrician, speech/occupational/physical and hippo therapists (that last one is horse back riding therapy), neurologist, geneticist, orthopedic surgeon, eye doctor, plus have seen a pediatric psychologist.
At this point, we've hit the proverbial brick wall. We could keep testing for this and that, but her "symptoms" are so vague that it would just be a crap shoot. And since she doesn't have any regression, medical science just isn't that interested (and that's what our neurologist said.) At this point, we're doing the "wait and see" game. Maybe in two or three years, medical science will find something new. Maybe she'll have another symptom arise and that will be the puzzle piece we're missing. Most likely though, we'll never know.
But all that aside, Maura is a darling little child and is sometimes easier than the other three ;) The older three love her to pieces, to the point where Maura really is the pampered princess. She loves music, especially a band called Great Big Sea that's a Celtic/rock/folk band out of St John's, Newfoundland. Enough so that I got her and I front row tickets to see them in March - we both had a great time and the band was very sweet to her. Though it makes it a little hard to try to explain to the preschool teacher that Maura's favorite song is "The Old Black Rum"..oops...
Anyway, that's her in a nutshell. This might have been shorter, but it really could have been much much longer.
