Jena, at 18 months

Jena Leighanne Sparks turned 18 months this month!! The last six months have been big for our miss Jena. Over the summer we switched pediatricians and our new doctor, after first examining Jena, referred her to both a geneticist and a neurologist for testing. He feels sure that her developmental delays and growth deficiency is attributed to a syndrome. She has, since her 12 month measures, been sloping downward on the growth chart, not that she is losing height or weight but she is not growing at the same rate as her peers. (right now measuring at the 1 percentile). Her nutritionist has seen the same trend. So off we went to the geneticist who pointed out to us the many birth defects that are markers for chromosomal disorders, some of which we already knew about like her heart defects and colobomas but some we were not aware of such as bent in pinkies and her "superman" hair swirl. The geneticist's report confirmed that she thought Jena had a chromosomal syndrome as well. Jena's blood was sent in for extensive genetic testing but came back normal... So off we went to the neurologist. The neurologist agreed almost immediately that Jena has a syndrome though he disagrees with which one the geneticist thinks it is. All doctors involved have referred Jena to two or more doctors so at this point Jena has: an opthamologist, a geneticist, a neurologist, a physical therapist, a nutritionist, and has upcoming appointments with a cardiologist, an audiologist and an immunologist (betcha didn't know that one existed did you!). With all of those doctors (and their very expensive appointments and tests) we actually haven't learned even one thing that really helps/matters, a little discouraging to say the least. But, Jena is as happy and loving as ever. Here are some super cute pics of our little darling and some things that she has been doing lately.... 

First and foremost Jena has started crawling, or scooting rather. And can basically now get from a to b whenever and wherever she wants! Which is HUGE!!! Though she still prefers to be held by mommy. :)

Jena pulls to stand and as you can tell from this pic on the trampoline she can hold herself pretty steady for a long while. She can also take steps if you are holding her hands and has started standing alone for 5-10 seconds at a time. Her physical therapist comes to her daycare now 30 min to an hour a week with the main goal getting Jena to walk.

Jena has started drinking from a straw!! I know that doesn't sound like a huge deal but IT IS!! I was near tears when she did it the first time. It has been really hard the last year just keeping Jena hydrated because she doesn't drink out of a cup (sippy or otherwise) and will only take a bottle right when she wakes up from sleep or nap (IF we are lucky) so transitioning to the straw now makes it possible to keep her hydrated. It's a good thing too because self feeding and drinking from a straw were the two main goals for her occupational therapist and she just recently reached these goals right when we lost the OT. (We lost the OT because we were adding physical therapy to Jena's services and it was kind of a trade off...)

So that is where Jena is at 18 months... consistently progressing, typically happy, and deeply loved.