Friday, December 9, 2011

Week Update

I have so much to write about.  But, of course, I don't have a lot of time.  So, I'll try to be quick.

Wednesday night Cooper woke up with a raging fever.  We took his temperature and it was 103.7.  He felt hotter than that.  We gave him some Tylenol and sat up with him for a little while.  His breathing was fast and labored, his cough was barky and his voice was very hoarse.  I'm sure he has croup.  After he calmed down a bit, we put him back to bed and he slept the rest of the night.  He's had a fever off and on since then.

The next morning, even though he still had a high fever, he was bouncing all around.  Lucky me.  He has a fever, he's still all barky sounding, he's clearly sick, yet he's still just as active as usual.  Yay.

But, on the positive side - I wasn't able to go run errands or go to the gym, so I had to stay home.  Which was great because I was able to get a lot of stuff done around here that I've not been able to do.  Like dust my bedroom.

OMG.  The dust in our bedroom was horrible.  I am shocked that we did not suffocate in our sleep.  For real.

But it's all gone now.  Ahhh.  And I feel so much better.

Harlie's IEP (Individualized Educational Plan) meeting was Tuesday.  You might remember this post about her getting her hearing impaired instruction in the special education classroom.  Well, we had to make this change on her IEP and take out her sign language interpreter service.  Now that she's trying to talk, she doesn't want to sign anymore.  Which is fine by me.  I still find myself signing to her on occasion, but I don't make her sign back to me.  I'd rather her use her communication device anyway.  Which she usually does without a fuss.  Oh, and we added a communication device implementation plan to her IEP, too.  Just trying to get that more incorporated into her day.  I have to call our local representative with the communication device company to see if he will come to Harlie's school to train some of the staff on how to use it.  I think that will help everyone if they understand the device a little better.  Including me!

We've also been working on getting an FM system for Harlie's hearing aid.  On Monday I took Harlie to her audiologist and she put a receiver or something on the back of Harlie's hearing aid.  Then the school adds something else to her aid when she gets in class and the teacher wears a microphone around her neck so that when the teacher talks, her voice is predominant in Harlie's hearing aid over all the other sounds.

That started on Wednesday or Thursday and that has been going well.  And while I was at her audiologist's office I borrowed a BAHA (bone anchored hearing aid) to try out.  I guess it's not a bone anchored one yet - it's on a soft head band.  And if it works, we'll have to get it bone anchored.  Her hearing impaired teacher has been using it in her class (since it's only Harlie and one other little girl the teacher can focus more on it) and it's been going GREAT!  In fact, her teacher called me this afternoon to tell me that she asked for it first thing this morning.  And that was after only one day!  She puts that aid on her non-hearing ear and it gives her sound through bone conduction.  So, I bet she hears so much better with it on.  I love that she wants to hear and wants to talk!  Progress will come so much easier and faster when she has the desire and determination to do it.  What a difference!!!

So, now I need to work on getting her the surgery to bone anchor that hearing aid.  They won't do it before age five because their skulls have to be a certain thickness.  They install an anchor in the skull and then the hearing aid clicks onto it.

I've also been working on getting her an appointment with the craniofacial team at Boston Children's Hospital.  So, I'll post about that soon.

Oh, and a few weeks ago, I took Harlie to a speech evaluation with a different speech therapist through our outpatient Children's Hospital here in town.  This particular speech therapist is really proficient with her communication device.  I thought for sure that our insurance wouldn't approve it because we are already receiving speech therapy once a week.  Without rambling too much (is that even possible?!) I scheduled that eval a long time ago.  And at the time I was thinking about paying cash for the speech therapist we see on Thursdays, Becca.  Here's who we see now:

Monday - Amy for 50 minutes (paid for privately, not through insurance)
Thursday - Becca for 30 minutes (paid for through insurance)
Various - Sharon for 30 minutes 2x per week at school

I was thinking of adding Delisa and paying her through insurance because her appointment would be an hour.  And her office is just a few minutes away vs. Becca's office which is 30 minutes away.  I would still keep Becca because I'm at her office anyway for physical therapy.  Plus, Delisa would be the only one working on her device.

But, after gathering all my info, I determined that Becca was too expensive to privately pay (not through insurance).  And I was thinking that maybe three private speech therapists was a little much.  I mean, she's still receiving speech therapy at school, two times a week for 30 minutes each session.  So, all in all, if I added another speech therapist she would be receiving ST from four different SLPs (speech language pathologists) totaling 3.5 hours per week!

I know it's kinda confusing.  And I thought my decision would be made pretty easy because I thought for sure insurance would deny us adding Delisa since they already pay Becca for ST services.  But, I got a phone call this week that it was approved!  Who knew?  So, now I'm trying to decide if four SLPs is really too much.  I honestly don't know how we'd fit it in her schedule.

But, I'm torn because there's a part of me that thinks if we give her MORE therapy she'll talk SOONER!  And isn't that a BIG deal?  A big enough deal to do WHATEVER you have to do???  Or is it just too much?

So, this is what it would look like:

Monday - Amy for 50 minutes (paid for privately, not through insurance)
Thursday - Becca for 30 minutes (paid for through insurance)
TBD - Delisa for 50 minutes (paid for through insurance)
Various - Sharon (30 minutes 2x a week at school)

My gut tells me it's too much.  But my heart says I want her to be able to communicate easier, better, faster, etc.

I don't know.  I guess I'll continue to mull it over.

Oh, and I'm considering co-leading a Daisy Troop for Harlie.  It's part of the Girl Scouts - you're a Daisy for KG through 1st grades, then a Brownie for (?) years, and then a Girl Scout.  And starting out as a Daisy, you pretty much have to form your own troop.  A group of us moms got together, but none of us really want to take on the responsibility of the Leader.  So, we're going to try co-leading.  I have no idea how I'm going to find the time for this.  But, I was thinking that Harlie and I rarely get to do anything fun together, Mother and Daughter.  All of our time is spent going to therapy and doctor appointments, etc.  So, this might be a fun way for us to take the time out to have fun and it will give her even more exposure and practice to playing with other girls her age.

Of course, her repeating kindergarten will throw a little wrench in things - but I'll deal with that later - if she likes it.

So I told Tom all of this and he said, "Just talk to me before you volunteer for anything.  And whatever you do - don't volunteer to be Cookie Mom."  I said, "Oops. I already did.  Volunteer for Cookie Mom, I mean."  What?  That means I'm volunteering to eat them, right?

Oh no.

Seriously, I was thinking that I would rather do that than plan an event or outing or something like that.  Because I HATE planning stuff.  So maybe if I'm Cookie Mom the other moms will go easy on me when it comes to planning shit wonderful activities for our girls to do.

So, our planning meeting is tonight over drinks and dinner.  Eh, we're starting out pretty well so far!  I can be bribed with food and drinks!

Now if I could just get that puppy, that would really round things out well around here!

Okay, that's my week in a nutshell.  I hope yours was as fun-filled as mine was!  Have a great weekend!



Susan said...

That's a lot to keep straight. The question of balance and therapy is tough, and personal I think. Another thought is, you could try it and cancel if it doesn't feel right.

I love the idea of Brownies. It's too bad someone else can't be the "den mom" but I think it's an excellent idea, and a great way to build in some fun.

I'm excited to hear of Harlie's progress with speech. I can't wait to see what she can do with a BAHA. The fact that she's speaking is fantastic!

Beverley said...

Re ST....what do the therapists think? Are they all offering slightly different services? Will Harlie get confused about what she needs to focus on?

Cookie mom's ought to just eat cookies!