same song, upteenth verse

We're knocked down again. And frankly, I'm getting weary of picking myself up off the floor. Again. But the pollyanna who lives deep down inside me can't be stopped.

Stupid us. We thought yesterday's doctor's appointment would be a routine follow-up in which the Dr would tell us that things are looking good for Ellie. He would say, "keep up the good work!" and we would all smile, go to casting, & head home.

Maybe I should stop expecting things to ever be simple.

Things are looking good. But, we were informed that Ellie needs two surgeries. The first will occur sometime in late October most likely. It will be on her feet and is a minor surgery. The doctor said it wouldn't hurt any more than getting shots hurts. Except that we are not allowed in the room which makes me doubt that because I am allowed in for shots. Thankfully, her physical therapist will be there and she assured me that she would comfort Ellie. (Because of her age, they will use a local anesthetic.) She will then require hard casts for 3 weeks. The good news is we will get a break to go home for awhile. The bad news I won't be able to bathe her. The other disheartening news is that after three weeks, we will return to get her casts off and then continue with our therapy program here - for another month.

Then, the doctor sent us for an ultrasound and we learned that Ellie's hip is dislocated. This makes sense since diaper changes are so painful. She will require surgery for this in February. After that surgery, she will be in a body cast for 6-10 weeks. I am really struggling with this - no bath, no swimming, I can't imagine how she will sleep comfortably, etc. Plus, I realize that this will delay development as babies are accomplishing so much at that age (sitting, rolling actively, beginning to crawl, etc.) I don't know how she will accomplish those milestones (or even work on them with her low muscle tone) when she is in a body cast. And I hate handing my babies over for surgery. It terrifies me. Especially with her airway issues. Maybe they can put me under this time too?

The good days outnumber the hard ones.

It's just that we are on a long journey. And every time I think things are getting more "routine" or easier, I find out I am wrong.

I get punched down again. And this time, I might just take an extra day getting back up. Hearing she will require 2 surgeries- and especially the hip one, has really discouraged me.

And I am fearful of what we will find on Tuesday when she sees her uppers doctors.

This is our monthly calendar.

It's actually incomplete.

There were two additional appointments for this week. I spent from 9:30-2 at the hospital on Wednesday & yesterday, we were there from 1 - 4.

Will seems to have outgrown his prosthetics already so he is starting that process next week. Those appointments were not on the calendar yet when I took the picture.

And October looks like this month except with the addition of several specialists. And we add another form of therapy beginning Oct. 6.

I'm exhausted.

Thursdays are our only "free" day anymore except for the weekends. And even those days aren't guaranteed "free."

(ie: last Thursday, Ellie was in the hospital sick & next Thursday, we are doing prosthetics for Will.)

I am trying to keep our days limited to just 2 medical appointments but I do think there is a day or two with three scheduled coming up.

I'm tired of feeling like I live around a medical calendar. My mom says we are just living but, honestly, it doesn't feel like it.

I feel like I'm not just enjoying these newborn days because I am constantly coming or going or doing.

I keep wanting to be a "big girl" and do it on my own but then I look at the calendar. Too many appointments go into Will's naptime and there is no way I could manage two kids at a doctor's when he needs a nap desperately. I wouldn't be able to focus on what the doctor was saying.

I did it by myself on Wednesday for the afternoon and I was wiped out. My mom dropped Will off at Ellie's therapy and by the time I got everyone home, put Will to bed, & fed Ellie, I was so tired and realized I had never eaten lunch - it was 3:30.

So as much as I want to be a big girl and do it by myself, I simply can't when our days are this jam packed. The reassuring thing is that when I am at Scottish Rite Hospital, I see lots of moms, kids, and grandmothers. So maybe this is "normal" - this need for another set of hands when one is in such a unique situation. I am thankful my mom (& mother in law who was also here recently) have the flexibility to take care of us and to help me.

Our schedule is overfull. I'm tired of living life around so many appointments but I don't know how not to with the hand we've been given.

And now I am going to take a little nap while I can.