Thursday, April 28, 2016

A Day Like Today

Usually, even with all the various therapy appointments and field trips and doctors' appointments that we have going on, there's usually quite a bit of downtime and play time that fits into our schedule.  But every once in a while there's a day like today.  

I decided to write this as a Day in the Life sort of post, but it does happen to be loaded with quite a few updates... since today's appointments were some of the more important ones that we have.

I should probably add that on a normal day we're usually early to everything... but every few months we'll have a day like today, when the schedules just don't quite work the way I was hoping they would...

12:05 am- James wakes up.  He's been sleeping through the night lately, but for the last three nights he appears to have given up on sleep and is wide awake.  I lay on the floor next to his crib and hold his hand until he falls back asleep.  Thankfully no one else wakes up.


3:22 am- He wakes up again. I try getting him back to sleep.  Nothing works.  I pick him up and carry him back to our bed.  He hasn't been in the Big Bed since he was night weaned a few months ago.   He is incredibly excited.  I realize that he's smuggled a board book about penguins into bed with him when he repeatedly puts the book over my face to get me to read it.  I confiscate the book and put it on the ground.  He fusses for about five minutes over the book and then finally goes to bed.

6:16 am- I hear footsteps charging down the hallway and put my hand up to shield James. Patch and Puppy arrive.  I hear the girls voices in their rooms.  It's time to wake up.

7:05 am- Paul has fed everyone and taken the puppy outside for a short walk.  I stumble around finding clothes for Maggie and quickly throw together a lunch for her while watching the clock.  I manage to find clothes that fit, and sweep up the cereal that a certain 18 month old launched onto the ground before hustling Maggie out the door.

7:45 am- We're in the car and headed across town for a last minute neurology appointment.  I'm hoping we can squeeze it in without being late to therapy.  I got a phone call earlier in the week asking me to bring her in today, so that she can have a physical before she can be approved for a sedated EEG.  Because everyone now agrees that a non-sedated EEG is completely and utterly impossible with our girl, at this point in time.



8:02 am- We've made it to check in.  We're not even really late.  Our appointment is at 8:30, but check in starts half an hour earlier.

8:03 am- I take Maggie to the pediatric neurology waiting room.  The room is new and is a lifesaver.  She hates the regular waiting room.  She loves the new kid waiting room.  I'm actually able to fill out paper work while she plays with the toys.

8:05 am- We don't get a blood pressure reading but we do get her weight and height, which tells us that the child who was labeled "overweight" at her last physical has fallen to the 16th percentile for BMI.  At least that won't come up at our next actual (non- EEG) yearly checkup.

8:09 am- Back to the waiting room for more waiting

8:30 am- We go in to see the doctor.  He asks how everything has been going and goes over the paperwork  I filled out.  Maggie plays with her mermaid doll in the sink, says "bu-bump, bu-bump" when he listens to her heart and sits on my lap while he checks her reflexes.  Then she watches the Under the Sea music video from the Little Mermaid on my phone while one of the receptionists coordinates the EEG staff and the anesthesiologist at the hospital and after three tries we finally have a date that works for both offices.



8:50 am- We get a token for parking and head out to the car.  Can we make it to our next appointment in time (I've warned them we might be late, but I'm still aiming for on time)?

9:05 am- We're late, but at least it's only five minutes.  Maggie stomps on two puddles between the car and the front door of the therapy office.  She gives me a kiss goodbye and skips off with one of her all time favorite therapists.

9:10 am- I'm back in the car.  I think about calling Paul and asking him to get James ready but decide I have enough time to do it on my own.  As long as I leave by 9:45 we should make it to appointment number 2.

9:18 am- I get home and scrub James' hands and faces.  I've never had a child so obsessed with getting as messy as he possibly can, constantly.  He is the polar opposite of his brother, who hates being messy.

9:31 am- My phone rings and I can see by the number that it's my back doctor. I desperately need to see her.  She works osteopathic wonders on my not-so-good back injury.  I didn't get to go to my last appointment after an exceptionally long appointment with James meant it had to be cancelled.  The receptionist says they have a cancellation and can see me (this afternoon!  this afternoon! I chant in my head)... in an hour and a half...  I have to decline... there's no way I can make it.



9:38 am- James is clean and dressed and I've even managed to safely deposit him in his car seat, which is becoming a challenge since the car seat jigsaw puzzle demands his seat be in the third row to make everything fit, and getting him into the third row now that I'm in third trimester is pretty nearly impossible.

9:58 am- We're early! We've made it.  We check in with the neurology front desk.  The receptionist asks me if the doctor knew we'd be back and if he asked why I didn't just bring them together.  I say "He does know, but he didn't ask" and don't add that I'm certain he didn't ask because he realizes how impossible it would be to wrangle the two of them together.

10: 02 am- James has had enough of the waiting room.  He's ready to go home.  He repeatedly tells me "bye bye" and tries to make a break for it down the hallway.  The next half hour crawls by.

video

10:50 am- It's our turn to see the doctor.  Upon realizing that he's not getting out of his appointment James refuses to do anything other than sit on my lap and cling to my shoulders like a baby sloth.  He won't walk.  He won't crawl.  He will try to steal a marble from the doctor and eat it.  Thankfully I have an instagram video to show to the doctor of him walking outside in the hallway.

10:52 am- I explain that while I feel that he's making slow but steady progress, I have to admit that James failed pretty much every category on the ASQ.  And that his pediatrician personally called me the day after his physical to let me know that he bombed the MCHAT and needs to be seen for autism screening ASAP, which, with the current back log means who-knows-how-long because they aren't even booking appointments now.  They only book three months out.  Anything after that is a wait list.
11:10 am- James is asleep in the carrier on my chest and I have things to do.  I have a script for orthotics.  James' right foot is pigeon toes and also rolls inward dramatically and orthotics should help.  I have the order form in my hand for a sedated MRI that I hand over to the check out lady.  We narrowly avoided the MRI last time, but James still strongly prefers both his left arm and his left leg over his right side, and that isn't supposed to happen at this age, so the doctor wants to take a look at his brain, although I can tell that he strongly suspects we'll get more answers when we finally get in to see the genetics specialist than we will from this test.



11:38 am- I'm home.  I find clothes for Sadie and Patch because the tutu and super man shirt that each have chosen for the day are going to have to stay home.  I grab a coupon I've been saving for a day like today, then I go online and order Sadie a kids meal from Chipotle.  Then I help Sadie fix her hair while James dramatically sprawls on the floor.

12:03 pm- Where did the last half hour go?  We load the kids into the car.  A mud covered Lily, who's been playing in the backyard, comes back into the house.  We drive to Burger King and use the coupon for the non-allergy family members and then drive to Chipotle to pick up Sadie's super allergy friendly kids meal.  By the time everything is ready we have five minutes to make it to speech.
 
12:48 pm- We're three minutes late, but that isn't altogether a bad thing.  Her therapist's lunch ends at 12:45 and she's never ready for their class to begin when we're on time.  Because 12:45 is the end of lunch, not the beginning of the next class.  This will have given her a time to have gotten everything ready and hopefully to have gotten the other kids to the classroom.

12:51 pm- I call the kids' pediatrician nurses' line from the car, while Patch loudly sings the Holy Baby song from the DVD he's watching and I leave a message that goes something like this "Hi, this is Cammie, James' mom, and I was just calling because Doctor D was hoping that we could change the referral that Doctor N wrote last week for James to Doctor S.  His sister Maggie has already been seen by Doctor A for genetic testing and he'd really like James to be seen by the same doctor so that all their information is in one place.  He's also hoping maybe Doctor A will be able to get us in faster since he's already seeing Maggie, and that maybe we won't have to wait seven months again to get in.  I know in the last conversation I had with Doctor N she mentioned that the referral was to Doctor S, so if we could get that re-written and sent over I'd really appreciate it.  My number is...."
 
1:02 pm- The nurse from the office calls back in record time.  She takes down the information for the new referral, but isn't optimistic that it will speed up the time we're seen.  It doesn't usually work like that.



1:15 pm- Sadie skips back to the car with Paul and we head across town for a quick trip to a thrift shop I've been meaning to check out since we moved to town almost four years ago.  I need to see if they have any shirts large enough to cover my enormous baby bump.

1:52 pm- We drop Paul off for an errand he needs to do and I drive back towards Maggie's therapy office.  If it was a sunny April day we'd be getting out of the car and going to a park, but with the torrential downpour that just isn't going to happen, so we go for a little drive, leaving just enough time to slide into a parking spot...

2:28 pm- ... and pick Maggie up.  Then we head back over to get Paul.



3:00 pm- It's time for an emergency run to the store to get almond milk, because Patch is basically addicted to almond milk... I pick up a few other things, along with some nail polish, a couple hair accessories, and a small toy to give Sadie before bedtime, because she has a very big day coming up and I wanted to do something, today, to celebrate.  Then we zip home and get dinner on the table.

5:30 pm- At five thirty, almost every night, Maggie asks to take her migraine medicine and then takes herself upstairs to get ready for bed. Tonight is no exception.  Paul takes her upstairs to get ready while I get pajamas for the boys and give a certain food covered eighteen month old a bath.

6:04 pm- James decides to taste a bar of gluten free soap.  He learns that it smells much, much better than it tastes.

7:43 pm- James is asleep.  Patch is laying in his bed with Puppy (the stuffed one, not the real one).  I go downstairs to find clothes for Sadie to wear to her retreat tomorrow.



7:44 pm- I yell up from the basement to Paul that "THIS IS AN EMERGENCY!!! YOU NEED TO COME DOWN HERE NOW!!!"  By the amount of time it takes for him to get downstairs I realize that I probably should have told him that my water had not, in fact, broken.

7:45 pm- I point him over to a corner of the room where the sewer has backed up into the laundry room.  I'm thankful that it's bath water from the kids and not actual sewage (this time).

8:03 pm- Sadie and I sit on the couch together.  I paint her finger nails pale pink and her toes pale pink with giant purple sparkles. She paints my already pink nails with a thick layer of purple sparkles and does a remarkably good job.  We say a rosary together before it's time for her to go to bed.

9:48 pm- The plumber who gave us the lowest quote (50% less than the first place Paul called) arrives and manages to push through whatever mermaid Maggie attempted to send to the sea, via the upstairs toilet, out of the pipes.  Disaster (mostly) averted.  Except for the mermaid.  I'm pretty sure the mermaid is still having a bad day.

And now, at a little after eleven, it is time for me to go to bed.  Because tomorrow is a big, although much less busy (I hope), day.  

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