A long overdue update

Ellie is doing amazingly well. Everyone that she meets, both professional and otherwise just can't believe that she has all of the medical issues that she has. She is doing so well, in fact that we often neglect this blog in favor of playing with her or doing other 'normal baby' stuff with her. To us, her daily exploits are quite boring but then a bit of perspective reminds us of how remarkable she really is.

She eats, she sleeps, she grows, she poops, she runs, she talks. All of that normal baby stuff that shouldn't be so remarkable is remarkable since we were told that day that she was born to expect 'significant delays' in her growth and development and reaching developmental milestones. Yeah yeah, delayed.........

A nice update to this stern warning came last week when we enrolled her with a different agency to provide Early intervention services for Ellie in the new town. The new agency folks are just as amazed as the old agency was. At 16 months Ellie is consistently ahead of all of her milestones and tested out at an amazing 26 months for social expression! I guess the Irish bullshit appeared early for her and she was on her game for her evaluation

Her doctors are very pleased with her growth and development and last week gave us the unanimous thumbs up about her progress toward the first goal of losing her TPN and then losing her other hardware. we are a bit shy about peeling away nights of TPN too soon (which will slow her growth if we go too fast) but we are moving in the right direction.

She still has a giant melon which remains a bit of a concern for the lab folks but otherwise she is great and her liver continues to do very well even after a very long time on infant TPN.

And her friends and family are pleased with her as well. This past weekend we finally made the trip to Maryland to visit a bunch of good friends of ours and introduce our kids (all 6 of them) to each other. Even though we had to leave a day early when one kid's bowels decided to erupt, we had a nice short visit and we think that we have dodged the gut bug. We opted for safe rather than sorry, which is our general approach these days since 6 hours in the car with a case of diarrhea is no fun at all.It was nice for us to be able to visit and I think that it was good for all of them to see Ellie in the flesh and see that she really is the super happy giggling little girl that we show on the internet. I'm sure it would be easy to edit out the bad days but (knock on wood) we really haven't had many of those in a long while.

The lack of updates is simply the result of very full schedule and a very happy girl.

When note worthy news happens, hopefully for the better, we will be sure to get it up here, but bear with us while the weather is good and the girl is happy. Denying the girl a tricycle ride in favor of a blog post just doesn't make sense.