Dani’s on “cruise control”

Dani has had a busy week and it is only Tuesday!  Monday, she had an appointment with her chiropractor.  It has been over a month since she has been there.  Dr. Marsh was expecting a bad appointment, but Dani was the perfect patient.  (For once)  Or maybe that it was an evening appointment that she did so good?

Today, Dani met a “new” doctor.  He is new to Dani, his specialty is not.  Dani met Dr. Falcao, a neurologist.   I hate to admit, but it has been over a year since she saw her last neurologist.  Wow, time flies.  I have to admit that I was impressed that this doctor was not a pill pusher.  After getting Dani’s history and listening that 3 years ago, her seizures lasted anywhere from 20 to 30 minutes and she was on SIX different seizure medications!  Today, she down to ONE seizure medication and her seizures last 15 to 30 SECONDS!  It’s not perfect, but let’s face it, when talking seizures and Dani, she will never be seizure free.  We can live with the 30 second seizures.  Dani has been relatively stable (knock on wood) and has not had an unplanned hospital stay in over 2 years.  He then said that Dani is on “cruise control” and that he didn’t want to make any changes!  (He would have had to really make a good case for us to agree to any changes because Dani has been so good lately.)  Why upset the applecart?    He did say he wanted to get to know Dani before he could make any recommendations, so at this time, we will be seeing him every 6 months.

Dani also got her port a cath flushed.   When she has her Baclofen Pump surgery, we will be removing this device. It isn’t working and it served its purpose.  This time around it did take 2 needle sticks.

Leaving the doctor’s office is when I got a tad cranky.  As usual when we have Dani with us, we park in the handicap parking.  We normally park in the van access because there is more room to transport the lug from her car seat to her kid kart.  However, there was a car parked in that spot.  Last I checked that was NOT a parking spot.  To make matter worse, there wasn’t a handicap sticker on this car or the car next to it.  So, I have to squeeze Dani in sideways to get her in the van.  It’s hot, I am sweaty because she isn’t exactly light as a feather, so I start fuming.  I get her settled in, and then I hunt down the car nazi.  You know what parking lot I am talking about.  That if you park in it and head to the main hospital, he comes out and makes you move your car.  Anyway, he was the one to park the cars ILLEGALLY in these spots. See, he was “swamped” and was doing “valet” and had no where to put the cars.  I tell him I had one hellava time putting my handicap daughter in her car seat  because of this.   He snaps at me and said HE WILL MOVE THE CAR IN FIVE MINUTES AND HE IS BUSY.  I never usually do this, but I took his name and called back later to complain.  That was ridiculous to utilize handicap parking and actually spots that aren’t even parking spots!

So, ok, I am still fuming, but we had one more stop to make before we could head home.  We had to pick up Dani’s medical supplies.  I had called in her order the day before to be ready today.   Her stuff is normally in the entry way.  I am looking and I don’t see a DG tag anywhere.  So, I have to go inside to see what is going on.  Of course there was a LINE in there and I had to wait.  Nice, when I was already fuming.  When it is finally my turn, I said I ordered supplies for Dani German but I didn’t see them.  He starts clicking away on the computer and informs me there aren’t any supplies because I didn’t order any!  Ah, excuse me?  Then beings I couldn’t tell him who exactly I talked to I was then informed that since I left a message on the machine with the order that there isn’t a guarantee time it will be done.  Ok, at this point, he is just in the wrong place at the wrong time.  But to stay positive, he at least now acknowledges I placed her order.  I try to stay calm and tell him to look again.  He comes back and tell me that there are a TON of notes on her account and he will have to go through them.  I just wanted her supplies so she could go home.  Thank goodness the nurse was with Dani in the van because I had a 25 MINUTE wait to get her supplies.  It wasn’t like I could just leave because she was down to her last feeding bag.  By this time, Dani has had it..she was tolerant enough to allow us to take her to 2 different appointments and stop for supplies.  She starts crying out.  Tell you what, that set me off all over again to hear her cry out like that.

Let’s just say when we went to school registration, I wasn’t a happy camper…