White flag

THIS HAS BEEN THE WEEK FROM HELL.

At one point, I had the energy to write this out in full detail.  I, of course, never took advantage of that, so now we have the Cliffs Notes.

MONDAY
Bug had an eye appointment first thing in the morning.  Pretty much status quo: She refused to cooperate, and I thought I was going to bust a blood vessel.  I actually did whack myself extremely hard (no, really, I started bleeding) on a piece of equipment in my haste to spring out of my chair to run after her and yell at her.  The doctor of course walked in (after 90 minutes of waiting) so she was spared the tongue lashing, and I had to sit with my wound.

Out of nowhere, the doctor is all, "I think it might be a good idea for Bug to learn Braille."

UMM.

Like, we know she's visually impaired, but by that much??  He tried to spin it as her just learning "another language" (ed. note: A complex, coded language that is used almost exclusively by those who are blind?? It's not like she's getting a fun exchange student trip out of this deal.)  Basically it made me want to crawl in a hole and cry, and also impulsively go buy an iPad, because EVERYONE PLEASE STOP TALKING ABOUT HOW MUCH IPADS ARE GREAT FOR KIDS WITH ISSUES.

(We did not purchase an iPad.)

I had mental notes to track/hunt/stalk down the VI (visually impaired) teacher at her preschool the following day.  If anything, we also had more insight to some of what gives Bug visual issues, like the crowding effect.  Example: If one person sits in an empty stadium, you can find that person very quickly.  If that person sits in the exact same spot wearing the exact same thing but now there are 5,000 people around them, it becomes harder to find.  It's much harder for Bug to see things when there are lots of other things crowding the space.  Which might explain why she shuts down when she's in crowds of people, or in a new space that has a lot going on... she just cannot see anything.

Later that day we DID have a birthday party to go to, which was super fun.

Fun take-home art projects!  Wonderful birthday party idea.

Dads, drinkin' beer.

My last-ditch effort to make these too-short overalls work.  Slightly more miss than hit.

Outside chalkboard!

I can't even describe to you how much I wish we had a yard.

My friend holding the gorgeous and delicious homemade vegan red velvet birthday cake.

Scarfin' cupcakes, with a younger sister photobomb.

TUESDAY

Matt was off, which was supposed to be super exciting.  I had a dentist appointment in the morning, for a routine cleaning.  The appointment has just begun, and the hygienist is doing the tongue inspection when she stops and then calls for the doctor.

OMG.

Doctor comes, looks at it, says to me, "We're going to refer you to another doctor."  He won't say anything else, other than, "You're probably fine."

OMG.

Hygienist continues the cleaning/mouth goring while I try and enjoy watching The Muppets, but I just can't seem to get into it, because I'M CONVINCED I HAVE TONGUE CANCER.

Matt picks me up afterward.  I am a sobbing, hysterical mess.  "I can't run!  I can't exercise!  Our daughter apparently needs to learn Braille!  I AM DYING OF TONGUE CANCER."

We do not go and buy an iPad.

We pick her up from school, and her teacher has left for another child's IEP meeting.  I talk with one of the aides about leaving a note for the VI teacher, and almost start to cry about this stupid Braille thing.  

WEDNESDAY

Bug accompanies me to the doctor in the morning so I can have my stitches removed.  Yay!  She says no running for another two weeks.  HISS, BOO!

I'm already convinced I have gained AT LEAST five pounds, and now you're saying another TWO FREAKING WEEKS?  No.  No no no no no.

After the appointment, we head over to Bug's big school picnic at Mission Bay.  We have only 45 minutes before we must leave for my ORAL SURGEON APPOINTMENT TO RULE OUT TONGUE CANCER.

I track down the VI teacher at the picnic, and she says she got my letter.  She also starts to get hissy about Bug's eye doctor (who this teacher knows well, and respects) making "educational decisions" for Bug, when that is, apparently, not his role.

I'm a little taken aback at her response, but I can see where she's coming from.  We talk about what some of the pre-Braille work looks like for kids Bug's age, and also talk about other classroom adaptations.  I'm hoping she follows through on her word to add some things to Bug's IEP.  

I get really frustrated, for lots of reasons.  No particular order:

- Bug is smart, so she's figured out how to cover up a lot of her shortcomings.  

- Because of this, she's really f-ing hard to assess.

- Because she is not functionally blind, she does not currently qualify for any vision-related services, although she is still visually impaired.

- They keep telling us that we won't know until she's "in a school setting."  I don't like just waiting to see what it's like for her in Kindergarten.  CAN'T WE HELP HER NOW, DAMMIT?  

The conversation ends because we have to leave.  Bug throws a huge fit about it.  

We get to the oral surgeon place (which is the most beautiful medical office I have ever seen, ever ever).  The exam room has both a big fancy desk with a huge computer monitor and a retro-looking dental chair.  I sit in the chair, he looks at my tongue.  Then he asks me to sit down.  "Let's talk about what we see."

Here it comes.  He's going to tell me I have tongue cancer, while my three-year-old sits innocently to my left, watching Super Why on my phone.  IT WASN'T SUPPOSED TO END LIKE THIS.

I don't have tongue cancer.  He doesn't think.  I probably have some kind of auto-immune disorder.  My hands have typical markings of the disease (I think it's a disease?) and he sees other spots in my cheeks that are characteristic of it.  He is 99% sure.  He tells me that I should not lose any sleep over this, and tells me not to Google anything.  I have a follow-up appointment in two weeks to check again; hopefully no biopsy is needed.  

Bug and I finally go home.  She naps.  I fidget.

Matt gets home, and they drop me off at my PT appointment in the afternoon.  Despite my doctor's advice otherwise, I have plans to run home after the appointment, now that my stitches are out (I know this is asinine, but sometimes I make really poor life decisions).  

PT goes fine.  I put on a compression sock over my already-tightly-wrapped ace bandage and head home.  I start by walking, then start to jog slowly.  I walk up hills, because that strains my calf more.  The running feels awkward.  My hips hurt, and my knees ache.  My gait is totally thrown from my nervousness of protecting my leg.  But I did it!  And it felt so wonderful.

THURSDAY

We go to Strides in the morning.  We do not run to class; we drive.  I start by walking to the first station.  I end up running between the remaining stations.  I am like a baby impala, figuring out its legs for the first time.  Then I quickly grow into an adult one and I am running, I know, way too fast.

After class Bug has PT.  My leg is sort of burning while we're there, but I ignore it.  It's still under lock and key in the bandage/compression sleeve.

We get home, I put Bug down for a nap.  I decide to unwrap my leg and, lo and behold, it's bleeding.  F.  F F F F F F F.

Not good.  Not good at all.

I call the doctor's office.  Matt now has instructions to stop at Rite Aid after he gets home from work to purchase sterile wash, gauze, and Steri-Strips.  I cannot fully answer the nurse's questions about the incision site because, and I know this is so ridiculous, I cannot bring myself to look at it now that the stitches are gone.

While Matt is gone, I have Bug help make dinner.  I don't do this enough.  As if this week already hasn't been bad, I thought I'd pile on some additional Mom Guilt.

So excited, yet so frustrated.  COMPETING EMOTIONS.

She insisted on squatting.  She would not admit to the fact that she could see better this way, only that she "loved squatting."

Matt comes home, and cleans off my leg.  "It does look a little open on the bottom."  We patch me up.  I dream, last night, not of additional stitches, but of somehow attracting the romantic attention of one Tom Brady.  My body is administering its own form of mental Morphine.

FRIDAY

Leg has been bleeding overnight.  Too much Tom Brady!

Take Bug to school.

Pick up Bug from school.

Go back to the doctor for my shame visit.

I'm laying face down on the table, and the nurse has removed all the bandages/strips we put on.  She says, "I'm going to go get the charge nurse to take a look at this."

Charge nurse comes in, pokes at it, squeezes it.  "I'm going to go get the doctor to take a look at this."

Doctor comes in, pokes at it, squeezes it.

They do a culture to double-triple-check that it's not infected.  Doctor doesn't think it's infected.  It has gone from "healed perfectly" immediately post-stitches removal to, "Eh, it's a bit separated."  I feel like a terrible person, an addict who relapsed.  

Steri-strips for another month.  Antibiotic ointment twice a day.

I ask the doctor (who is not the one who performed my surgery), "So what are we looking at, activity-wise."

"Clearly whatever you did was too much,"  she says.  (ed.note: You think I actually admitted to the doctor's office that I ran, TWICE?  I am much too cowardly.)  "So, scaled back from whatever that was."

She totally knows what I did.

-------------------------------------------------------

I could make another post for this, and back date it (or something) but I'll just put these here.  Last weekend we went to the Solana Beach Fiesta del Sol.  It happened that we showed up right as Hullabaloo was playing (this local kids band).  So although we totally didn't plan it like all the other kids who were there, we played it off like we did.  

Girl in the flower dress is totally just Jealous.

And this was one of the SMALLER diamonds I saw during said concert.

This whole scenario, THESE PEOPLE, are sooo California.

The Solana Beach Fire Department had a dunk tank as part of a fund raiser.  There were a number of small children who were participating, and they would sometimes give the kids a little "help" if the guy hadn't been dunked in the last two minutes.  We figured we'd buy Bug a ticket, and since she's cute, probably help her out.

Except that she nailed it, completely unassisted, on the first try:

It was all kind of downhill from there.  We walked around a little bit more, then went home.

Twin A and Twin B.  I did not know she was bending her leg like that until I saw the picture later.