Monthly Archives: February 2012

Early Intervention

Friday we have an appointment with Early Intervention.

I was confused with the phone call as this is something different than the mail I had just received.

But I talked to the gal, then I talked to my husband and it is slowly coming into focus for me. I think the deal is that doc set us up with PT at Children’s to get us moving because it can take a while for the EI to get in place. He didn’t want us to have to wait that long, he wanted us to feel forward momentum. 🙂

So, we’ll go ahead with that appointment to make sure that *is* what’s going on and what we need to do from there with all of it.

Anyway, this week: the gal is coming to visit us, get a feel for what we believe needs addressed. Then we have an evaluation in a few weeks, actually, a week after the evaluation visit at Children’s.  From there, well, I guess we’ll see from there.  Like I said, I’m still not entirely sure why I have two appointments. I have to make sure we have that all lined out. It may be that she receives care via Children’s until she gets a full eval from EI ???  Anyone have some insight/input there?

So, um, yeah, well, I guess this is step 2, huh? First step was getting the appoints with the appropriate therapies in motion…now they are in motion and will be meeting soon.

Oh, for the eval…she will be tested in 5 areas and must have a minimum 25% delay/deficiency in at least one of those in order for EI to cover her. So, we’ll see.  Weird how you can ‘wish’ for both at the same time. Of course you ultimately wish there were nothing wrong or different, so there would be no %. But then, you know there’s a difference and that this could help so you wish for the minimum so they can receive the help being offered.  Did that make sense? It didn’t come out as eloquently as it rolled around in my head. LOL But anyway, yeah, wishing for and against a 25% delay. It is obvious there is a delay/deficiency, I just don’t know to what degree. I kind of feel like..if it’s not that minimum 25%…what then?  What do we do?

Put that on my list of questions to ask Friday I suppose. 😉


Intro to Physical Therapy

I just received our letter in the mail.

Approved for physical therapy. Appointment scheduled for March 6 for our initial evaluation.

Now to look up our surgery dates to put them on our information form.

Something I thought was kind of funny. The form asks: What is the best way for a therapist to give you information and instructions: __writing them down __showing them to you __telling you. I had to check all of the above. I need it written so I remember it was said, I need it said so I remember to refer to written instructions and I need to see it in order to fully grasp.  Multi-sensory learner? Yes, I think so. LOL

So, here we go. Starting down another path on which we’ve never before ventured. I’ll keep you posted.

UTI #1

Our first experience with UTI with LilBit.

A while back when we were all sick, I mean, the time before the time before this time (I feel we’ve been sick to one degree or another since December!), hub and I wondered if LilBit might just have a UTI. Her diapers had become quite stinky, in both regards 😉 She was fussy and had a fever that would come and go.  Present for a couple of days, spiking highest at night. She would sweat all night, nasty little thing to sleep next to! Then come morning it was gone and she was fine all day. That night it might spike back up, or it would hold off another full day then start in again. But, we were all sick.  We all had stuff going on. We all had fever at various points.

So we just monitored her, gave her cranberry juice, kept on going. The fever stopped on its own. The cold stopped.

Then last week we were at clinic and we were asked about UTIs, as is standard protocol given her condition. We mentioned this possibility, but said it was just that, a possibility, nothing confirmed.  Doc was ok with that. Didn’t beat us up over not taking her in or anything, he was fine with our course of action. Also as part of standard protocol, they run a test on the urine they retrieve while starting the urodynamics.

The office called Tuesday to say they confirmed a UTI and were calling in a prescription for Macrodantin. Alright, we can do that.

Or not.

Our insurance wouldn’t cover it. The pharmacist said the insurance wouldn’t cover it for her age, as it is a capsule, not necessarily ‘intended’ for her age. However, our doctor knows what he is doing and had given reasons and instructions we were aware of and comfortable with. The pharmacist said we would need doctor approval. That she would leave a note for the next day’s pharmacist to call and suggested I call the urologists office as well to make sure things are in motion. The pharmacist sounded like she didn’t think this was any big deal. Just make the call, it would get approved, pick up rx soon, done.

I get a call Wednesday with a change in prescription. The urologist’s nurse said the insurance wouldn’t cover because there wasn’t a generic.  ?? I have no idea what’s right. But, anyway, our urologist is writing a letter to BC/BS in regards to this. Meanwhile, LilBit will be taking something else. She will be taking a 7 day course to kick the UTI then will be on a low dose for prophylactic treatment.

She’s fine though. No fever, doesn’t act like anything is bothering her, so that’s good. Just a minor infection, par for the course with Spina Bifida I am learning. Now we just tend to it the best we can to keep everything in as good shape as we can. 🙂

14 Month Clinic

I keep thinking I’ll actually have something to write here after clinics, but then I get here and really have nothing to say.

LilBit had a pelvic x-ray, renal ultrasound and urodynamics testing done yesterday.  She wasn’t thrilled with any of them.  She was more aware of everything this time around and has already been in this ‘shy phase’. So, she fussed about pretty much everything.  She didn’t exactly care for the ultrasound, but daddy appeased her for a bit with his phone. She didn’t like lying down for the x-ray, she never has enjoyed the x-ray room though. She really didn’t like lying down for the urodynamics. Basically, don’t lie her down and you might be ok. 😉

Uro showed a tiny bit of reflux in her kidneys.  Doc wasn’t too worried about it, the amount was so small and he says it is normal for it to sometimes be there and sometimes not. If she has problems with UTI, then he wants her on a low dose of antibiotic, but for now, he’s okay with everything.  He did note a lack of sensation down there.  Just what that means, we don’t know yet. Right now there is slow leakage. The fact that it is slow is positive. But who knows if that will change over time.

We’ll be watching what she eats, careful to avoid constipation.  Keeping an eye on things there. We mentioned her tendency to not have a bm for a couple of days and then for like the next 3 days it is every. single. diaper change. And very stinky.  Since this has really just been since she started eating more solid foods, doc is not quick to put her on anything, but rather just wait and see once her new eating habits and body adjustments level out.

Then the x-ray showed all was well. Scoliosis still straightening out nicely and no hip issues.  She will, however, be starting early intervention as soon as it processes, which could take a month or so.  She doesn’t have much strength in her left leg. She will crawl with it, actively crawl, not just drag it.  She will even stand on it, but not much. She doesn’t pull up very often at all and only willingly stands on occasion.  Just as it was with crawling, we do not so much feel it is because she can’t, but because she just doesn’t want to yet.  I remember being discouraged that she wasn’t crawling or really even making any attempts to do so, then all of a sudden she took off. Not to say she *will* do the same with walking, it may still not come as quickly or readily to her, but I *do* think she will just wake up one day and decide to go after it. 🙂

All in all, a positive report. No set backs. No big leaps forward. But forward progress none the less.

She goes back in 6 months, seeing everyone, including neuro.

I’ll keep you posted on early intervention.  Within a month or so we should be set up with an appointment at Children’s. After that we will have once a month sessions in home.