Good News!

Yesterday we had the appointment with Sweet B's neurosurgeon. While the answers we got weren't everything we wanted to hear, I'm very happy.

Her tethering surgery is going to be simple. They will open up her back and cut the cords, where they are hanging on to a little piece of fat (it's much more complicated than that but this is what my non-doctor ears heard). The surgery only takes 90 minutes and it only requires one overnight stay! He said that her fundolipication surgery was much more complicated than this. I think the fact that the hospital stay is going to be short this time is what is making me happy. Seriously, being pregnant and staying at the hospital was exhausting.

The part that I didn't like hearing was this: The damage has been done in her right leg and foot. She is going to require physical therapy to help her walk normally. The physical therapy is not a big deal for me. We already go weekly and love our therapist. We had thought cerebral palsy was causing her to not be able to walk, so I'm sure that our therapy will look very much the same. But it's the fact that the damage has been done...And that if we would have caught it she wouldn't have this problem. A good friend of mine whose husband is a pediatrician, told me that a pediatrician wouldn't have caught this either, and that I should not feel guilty. This made me feel a bazillion times better. I just want to make things easier for her, you know? I try so hard to give her every opportunity and I wish I could have given her this opportunity earlier, before the damage.

She might have issues with emptying her bladder fully, which could potentially reflux back up into her kidneys causing damage. We are going to have to teach her to sit for a while longer on the potty to make sure that everything has come out.

The neurosurgeon said that with therapy she will learn how to use the leg and foot to the best of her ability, and she might not even have a strange gait. I think about how her daddy is an athlete and how I was a dancer, and it saddens me that she might not have this opportunity...But then, THIS is what happens:

I think of all of the moms whom I met before B was born whose babies had died due to stillbirth, prematurity, and all of the other reasons that a baby can die. I think of the moms that I have met in the special needs community who are dealing with so much more than we are. They would welcome Sweet B's problems. I only have to look at Sweet B's beautiful face to be reminded of how fortunate we are that she even made it into this world alive. I think of the promise that her future holds (which by the way, every child's future holds promise no matter the diagnosis).

For some reason this was part of Sweet B's journey, and although it saddens me, we must move on!

We are still working on the insurance thing. Ironically, my husband's small insurance business is the reason we don't have insurance. Imagine that!

I've learned that even though Sweet B has a feeding tube and speech and motor delay, that her "developmental delay' diagnosis doesn't get her the therapies and insurance that she needs. So I must fight and fight and fight and fight for all of it. But she deserves no less.

We are thinking that her surgery will be in the next few weeks as I want it done with ASAP. We've got a baby coming in ten weeks and B needs to be all healed up!

And it's only one more week of continuous feeds until we can start feeding her bigger amounts. It's feeling like a prison here and we're getting restless. I can take her to the park or beach or shopping if I want, but the continuous feeds and the pump I have to carry around make it exhausting, especially since I can't drink a huge caffeinated mocha to make it all seem a little easier ;)

I must go now to attend to B, whose new favorite word is "more." What does she want more of, you ask? Everything!