Update on Presley...

Recently I have had a few people ask about Presley and her status... things she is doing, how is her health, etc. It made me realize I haven't really posted an 'update', so to speak, and considering so many of you stop by mainly cuz of my little butterfly, I thought I would update you all.
This past winter was a rough one for Presley, her little preemie lungs made it difficult for her to ward off much. She was a steroid junkie and was often sick, from winter cudies, to pneumonia, and at the very end of the winter, a mild case of RSV. She hasn't worn oxygen during the day since the first of this year, unless she was really sick and congested.
However, since this summer, Presley has been doing great, she hasn't been sick at all, although you can tell she has allergies in the spring. She is off oxygen completely, and as far as medication, she only takes singular at night for her allergies. No heart medications, no respiratory treatments, nothing... considering all she has been through, I consider that HUGE!
As far as food, Presley eats very well, however, we still give her liquids through her g-tube. Her speech therapist and I have started to be very aggressive in that area. But, it doesn't matter how well she learns to take liquids, or how soon, I will not even contemplate getting rid of her g-tube until I know for sure she can handle a winter without being sick constantly. I know when Jett gets sick he REFUSES to eat or drink, Presley having that g-tube assures me that I can keep her fed and hydrated (i.e. OUT OF THE HOSPITAL) if she decides to not eat or drink during a sick period! She will most probably have tubes put in her ears, and everything else taken out, (tonsils, adnoids, etc) once she turns two, most likely next summer. I have no doubt that will make a drastic change in her heatlh come the flu and cold seasons!
Where as one may think Pres has a 'team' of doctors, she doesn't. She has a peditrician, Dr. P, that I adore. He was recommended by the surgeon who did Pres' heart surgery, and aside from being a peditrician, he is a cardioligist!! We get two for the price of one! He is aggressive, has a beautiful staff that ADORES Pres, not to mention he is literally 4 miles from my house. Dr. P has joked with my kiddos to call him 'Uncle his name' and that he needs to give me a key to his office, as we came and went pretty regularly last winter.
Aside rom needing a cardiologist, one may assume Pres would need a pulmonologist (lung doctor) on her 'team', however, between, my being a respiratory therapist and the respiratory therapist on staff at Dr. P's office, we just don't feel the need. I can safely assess Presley in regards to her respiratory issues and Dr. P is awesome about ordering frequent xrays or treatment in that area.
As far as developmentally, Presley is 18 months old at the end of this month, but in many ways seems like a 6 month old. She still isn't sitting up or crawling, however, she does have her own way to get where she wants, whether it be rolling, or a kind of belly crawl. She has cut two teeth, albeit they are in the very back of her mouth, rather than the front. She grabs and pulls at everything, and changing her and feeding her get harder each day, as she wants to wiggle and move constantly. She still sleeps in our bedroom, however, that should change by summers end, I just seem to be taking my time ordering her bed, she and Mikah are going to be roomies, which tickles Mikah to death!! (Who the hell am I kidding, all the kids still sleep with us half the time! BTW, does anyone know of a size bigger than king? *sigh*)
She jabbers and yells and is very verbal, and has been for quiet some time actually. She is very good natured, although lately we have noticed a bit of an attitude in that she will get upset if she isn't being held or paid attention to at times. She still wears 9 to 12 month clothes and weighs 18 pounds, she's come a long way from the 3 pounds she weighed at birth, huh?!
As I write this, I realize how absolutely at peace I am with where she is, EXACTLY where she is. I have no sadness or issues about her delays in development. Presley will do all of the things that we want her to, and expect her to. Mike and I have very high expectations of her, realistic, but fear not, high. She will just get there when she is ready. Her therapists are always asking me for 'goals' in relation to time frame, like 'I want her to be sitting up by the time she's two, or walking by the time she's three', they have found that they have to drag this out of me because I just don't put expectations in a time frame. I want all those things for Pres, and I know she will reach all those goals, I just don't care when she does!
Both Mikah and Jett, were sitting up and crawling at 7 months... but at 7 months, Presley was doing something very different. I have the image embedded in my brain, and it is that image of her at 7 months that allows me to be so very patient... this little lovey can take all the time she wants to play catch up!

The embedded 7 month image...
Images since...
(I like these better, don't you?)