Insomnia

I can't sleep. I give up. There are approximately 1,000 conversations occurring simultaneously inside my head, because of this I lie awake. Maybe writing will help alleviate the chaos inside. Not every conversation is about Isla but I optimistically hope that while I clarify my thoughts specific to her the other deliberations will sedate.

I have not written in a while, see, things have been hectic with the holidays...as always.

I believe that Isla had a wonderful first Christmas, her enchanted face told me so. Santa was good to her this year. Isla, Nate and I had a peaceful, quiet morning alone and that was by far the best part of my holiday. To add to the brilliance of the day, Isla began to crawl on Christmas morning...well it's not exactly crawling...it's "combat " crawling but who cares! It was a huge step for her and Nate and I both stared in disbelief from opposite sides of the room. She is a hurried little thing when she gets to it. She has a purpose, a one track mind and she is goes for it. Don't lose that Isla!

Since then she has only gotten better. She had her Occupational Therapist come from Early Intervention today and she was so impressed with Isla's progress from just 2 weeks prior. She showed us more strategies for helping Isla in areas she is lacking. Isla worked so hard throughout the entire hour that we were all so proud and impressed that she tolerated it as she did. She did cry in protest at times and needed a hug from mommy but got right back to it.

Nothing more has developed on the other side of things; her vertebrae, hearing, eyesight, etc... This is particularly annoying to me, although I need a stronger, more fitting word than annoying. Any ideas?

Dealing with this hospital has been a struggle from the beginning. We have felt that if we want any forward progress at all than we are the ones who need to facilitate it. Now, do not misunderstand, I realize that Nate and I are Isla's strongest advocates. This is something I do not have a problem with and accept the position proudly...but shouldn't the doctors communicate with each other? If one doctor tells us out next step is to get X tested shouldn't someone set that up for us...or at the very least point us in the right direction? Usually we never hear another word about it until we call, a little follow up would be appreciated!

I should point out that the cranial facial team has been easy to work with. Within that department we have a coordinator who makes the appointments for us and sends us confirmations, reminders etc., an she is always available to take our questions. The doctors within that department communicate and set us up with the next appointments needed. I guess that is why I am frustrated, I can see how smoothly the process can happen.

Why is it that the entire hospital is not run this way? I have spoken to other parents who have said that their experience has been very similar. This disgusts me. We are parents of children who have special needs. We are giving all we can to our children and our focus should be on them, NOT on making sure that the doctors are doing their jobs.

I apologize because this has turned into a rant, but in my defense I did preface with a warning that I was clearing out the chaos in my mind.

Long story short. I will be calling Children's Hospital Boston this week to see if there is any way we can take Isla there. I would like to see if the level of care is superior, which I am optimistic that it is and in the very least I think a second opinion would be best in all areas.

More doctor's appointments are the last thing we need in our lives right now but as I have said before, I will do anything for Isla and I need to know she is getting the best care possible.

Merry Christmas and Happy New Year to everyone who has come to read Isla's story. I have high hopes for 2010. I think it's gonna be a good one!