Friday, August 3, 2012

a new chapter

We're about to enter another phase in Millie's care, I think.

Things have happened quickly this week. After posting Monday that Millie would be having an evaluation with the speech therapist, I soon was notified of an opening Thursday afternoon. The evaluation concluded that Millie would be going in for two additional therapies a week: one focusing on her feeding issues and the other focusing on her verbal skills. This brings her total therapy appointments to five a week, although they are scheduled as such that it's really only two mornings a week. Those mornings are just getting a little longer now.

We listened and talked with the therapist for about an hour. At the end, we asked if she thought we should, perhaps, consider pushing to see a pediatric neurologist.

This has been in the back of our minds for a while, to be honest. But as long as Millie was making progress in therapy, we were content to continue on that route. Considering, though, her recent regression in speech, Ray and I were more seriously considering this a viable option.

Apparently, Millie's three therapists, too, had talked about it, thinking that at a minimum it would perhaps rule some things out and at least get it noted in her medical history. No one wanted to scare me - the idea of seeing a neurologist is perhaps scarier than the experience itself? - but they seemed to think it was good idea.

But even with their input, I still needed to get the pediatrican's referral. I did that today, calling at 7:30 a.m. sharp to talk to the nurse, who put a message into the ped. Honestly, I expected that it being Friday to not really hear anything before Monday. But at 10 a.m. I got a call from the nurse saying he had agreed and we would be referred to a pediatric neurologist.

From there, my day got awfully busy very quickly. We thought we'd go to Fargo since that is kind of the larger base for our local hospital system. But Fargo couldn't get us in until March (!!!) so we were referred instead to St. Paul.  I was told at about 10 a.m. to expect a call from Children's at some point today. They called 20 minutes later, getting our medical insurance information, a brief history of Millie's development, etc.
I was told that they were booked for "a long ways out" so they would talk to the pediatric neurologist and get her input on how soon Millie should be seen so they could then squeeze us in.

At about noon, give or take, we had an appointment: this coming Thursday.

As in less than a week from now.

Honestly, I'm getting a little more freaked out as the day goes on. A very big part of me - probably the majority - believes that they are just on top of things and want to get us in sooner rather than later because doing so is for the best (you know, "early intervention is key" and all that).

But a smaller, less vocal part of me is getting somewhat scared, like perhaps they suspect something is more seriously wrong than I suspect myself. Do they know something I don't? (OK, obviously, the pediatric neurologist knows a lot more than I do, but you know what I mean. Do Millie's therapists see something of concern that I myself am missing? Is she doing or not doing something that indicates a greater chance that something is more off than I ecpect?)

I have a feeling it's going to be a looooong week.

The plan is to leave Wednesday evening. I was told to plan for a full afternoon Thursday with the pediatric neurologist so I didn't want to make a four-hour drive that morning; Millie would have been unbearably crabby by the time of her appointment.

So how are we doing? Not great. Not bad either but not great. Things are a little tense at home. Not because we're fighting or anything, but we're worried. Even though we're trying not to be.

Yet we honestly believe we're doing what we should  be doing. No matter how the next few days, weeks and months go, we're not going to look back with regrets, wishing that we would have acted more promptly with our concerns.

Good thoughts and/or prayers for the coming days are appreciated. Greatly.
- Bethany :)

1 comment:

Anonymous said...

Hard to say not too worry...but try not too worry too much. Love you and saying lots of prayers. Dave and I really believe that in time she will be crawling, walking and never stop talking!