I'm Quiet

I wanted to do a quick post to let you know that we are all doing well! We had a big celebration a few days ago when Sweet B put weight on her feet and stood (with our help) and leaned on a play table. This is a huge deal but I just don't have the energy to explain why right now. Maybe it's because Sweet B has decided that naps are for babies and she's just not a baby anymore. Oh, and going to sleep at night is for babies too. Tonight she treated us to loud screams when I left her bedroom, which caused her to puke, which caused me to have to change her shirt, which caused her to smile really, really big because she got out of sleeping!

We are switching her medical care, and that is consuming a lot of our time now. I've learned that being the parent of a child of special needs means that there is an awful lot of advocating that you have to do. So we've spent the last week begging to have her medications covered, meeting her new doctor, scheduling appointments with her new GI doctor, and working with the pharmacy to send us her feeding tube extensions, pump, and supplies. I've been meeting with different people trying to get her formula covered. So far we have not been successful in getting her formula or medications covered, and we are trying our hardest to do so. Sweet B's new doctor is clearly going to be an advocate for us.

Today we agreed to allow her new doctor to formally diagnose her with cerebral palsy. It was hard for me and it made me sad. However, after about three minutes of self-pity and pride, I decided that this is what is best for her. She deserves all of the services that she can get. She deserves more physical therapy and feeding therapy, as well as all of her medications and formulas covered. I was reminded today that it is just a diagnosis. It does not change who she is and what she is capable of. She may or may not have it, but it really doesn't matter. What matters is that she gets the things that she needs. I'm not going to be the parent who doesn't get all of the services for their child, just because of pride and not wanting their child to be labeled. As a teacher, I've seen this, and it's not good.

Still, it's hard for me to stomach. But please...After all I have stomached this should be very small on my list of concerns.

Anyway, we are having a lovely December and every day Sweet B becomes more toddler-like. She is such a happy little girl!

I have a few blog posts that I've actually already written, but I struggle with publishing it because my blog is public. I struggle with how much to share about our lives. I do eventually want to write a book about our experience, and I suppose that more will be exposed then, but for now, I have to be somewhat protective of what I write. The important things are that my husband and I are very much in love and we love our little family. We've spent almost fifteen years of marriage (OMG!) building a strong foundation, and even though raising a child like Sweet B has its challenges, as does growing our small business, we are strong.

We're good. Sweet B is a perfect angel and progressing so much! Her new physical therapist sees her walking by holding our hands, by June at the latest. Isn't that fantastic??!!!

I hope that your holiday season has been lovely!