Doris Augusta Holt

Mudder

Doris Augusta Holt, 1924-2009

Our sweet Mudder.
We miss you so much.

I'm sorry to have missed the funeral today. Mostly sorry about missing the fried chicken at Becky's, though. [This is where I punch her in the shoulder.]

I will continue to forget people's names and steal salt shakers in your memory.

This Corona is for you, Mudder. I hope that wherever you are, you have a plentiful supply.

Love,
Kari

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Float like a butterfly, sting like a hausfrau

I bought these:

Photo(16)

And I plan to do this:

Photo(17)

As soon as I can figure out how to buy one of those red punchy things up there.

(And seriously, why doesn't that glove picture look tough? It totally looks like a Shamu puppet on my hand.)

When I learn how to pummel things fiercely and with my eyes bravely closed, as expertly modeled by the wee-er one up there, I am going to join the roller derby. Then it's totally going to be, Step Off, World.

The Trach Wreck is going to take.you.down.

Water or vodka?

February, 1982. St. Pete Beach.

Me (age 6), my sister, mom and dad, Mudder and D.

Does the watering can have vodka in it? You be the judge!

02_82_stpete

Missing Mudder AND the beach today.

Happy, though, that my dad has forsaken the cut off jeans lately.

Bye, Mudder

My grandmother died this morning.

The weird thing is that I'm pretty sure I saw her in my bathroom last night. It was 4:45am and I tend to hallucinate when I'm exhausted. But I saw something out of the corner of my eye when I was brushing my teeth. A flutter, a gauzy flash reflected behind me in the mirror. And I thought of her.

Then, this morning I got the call.

I was very briefly trying to figure out a way to go to the funeral. Get a nurse for a whole day and maybe leave early morning and come back that night. Maybe bring the wee one to see his cousins for the day.

But it's all impossible. Too much money, no nurses.
No time. And what if something happened with Ike-a-saurus while I was gone?

This is the only funeral of all my grandparents that I will have missed. I guess that's because I'm old now and have my own problems – a testament to her for living so long!

We love you, Mudder. We miss you. Go dawgs.

Anybody have a punching bag?

Ugh. This effing day.
I thought Fridays were good days
not so much this week

I just want to SCREAM. And why won't Typepad let me change my font size right now? I want to SCREAM LOUDLY.

I don't even know where to start.

Isaac is sick; the wee-er one is flipping out today – just total meltdown mode; the nurse that came this morning was more stressful than helpful; Cipro comes in tiny tiny balls that get everywhere on the trach ties; the Cinci people can't fit Ike in until September for even just the preliminary tests; the trach clinic people in Austin can't see him until July. NO ONE IS MAKING ANY ATTEMPT TO HELP US.

We are just floundering in a sea of fuck-yous right now. It's as if the medical establishment WANTS Ike to get sicker before they will help. They WANT him to have a g-tube. They WANT him to get sick every fucking month. They WANT things to get worse. Why? Why is that? Why doesn't anyone understand that WE HAVE TO GET THE TRACH OUT OF HIM? Why am I the only one willing to believe that things can get better and get fixed quickly? Why is no one else as impatient as we are? Why does no one else seem to see the vicious cycle of what's happening here? Ike needs the trach to breathe – but the trach makes it harder for him to eat and grow and develop – but he needs to eat and grow and develop to get the trach out. The health issues he has other than the stenosis, are being CAUSED BY THE EFFING TRACH.

We are taking a baby with healthy lungs, healthy eating habits, normal development and a happy disposition and clusterfucking that all to hell right now. Sure he needs the trach to breathe. Obviously, I want him to have the trach to breathe. But if there are a battery of tests to be done to determine which surgical procedure he needs to remove the trach, waiting until September seems like we are just dooming the healthy lung, healthy eating, normal development trifecta we had before all of this.

The longer the trach is in, the more often he gets sick. And it's not regular sick, it's BAD sick sometimes. The longer the trach is in, the more likely he is to aspirate and hurt his lungs. The more likely he is to aspirate, the more likely the doctors will want to do the g-button. The more likely they are to do the g-button, the more likely it is for him to have oral aversions that last for years. The longer the trach is in, the more likely his development will continue to be delayed, even with aggressive interventions.

The trach is our best friend and our worst enemy.

And no one seems willing to accept that other than us.

I'm tired of being the family people feel sorry for. I'm tired of specialists who want us to accept the status quo. I want to fucking get on a plane and fly somewhere, anywhere with trained, notable physicians who are not stymied and confused by Ike. And I don't want to have to wait FOUR MONTHS to do it. ARGH.

In other news, the wee-er one slammed herself into the corner of a wall today, producing a goose egg the size of her fist. She refused all ice, preferring instead to scream.

In further news, our insurance wants to cap our nursing visits. No more nurses. We've been told not to worry about it. With the MDCP kicking in sometime soon, and the corporate headquarters of the nursing company fighting on our behalf, we should be OK. I hope so. But then again, if we keep getting nurses who are flustered, inexperienced with trachs, and need as much supervision as Ike does, then I don't know what we'll do.

I somehow know exactly what I want to do about things and yet nothing about what I can do for everything.

Is the answer to be patient? Stick with Cinci? They know best? Or do we branch out into the uncharted territories? The new doctors with smaller, but successful track records in other parts of the country? I'm tired of Ike being the trach baby everyone experiments on and uses as a learning tool. And yet, if he's just going to be another cog in a surgical wheel, I surely don't want that either.

It is incredibly fucking frustrating. All of it.

All.

Of.

It.

I would punch a wall, but I need a non-broken hand to suction my trach baby. My trach baby no one seems interested in fixing.

*** eta ***

When I say no one is trying to help us, I don't mean you guys. Our community, friends, family, are helping us more than you can know. You are a tremendous blessing for our family. This is just a whiny "woe is me" post about the system and the lack of local resources and how much it all sucks.

50 actual ways to make your baby smarter

1. Stop covering his face with Target bags

2. Open the garage door BEFORE turning on the minivan

3. Just say no to fumeless oven cleaner

4. Turn the TV on louder so he can actually hear it

5. Get him an iPhone

6. Wash his hands after he plays with the mercury from the thermometer

7. Wait until he's at least 1 to sign him up for contact sports

8. One word: Potty tutor. Shit. That's two words.

9. Ignore him in Spanish

10. Fortify sandbox, boogers, rocks and driveway worms with vitamins

11. Quiz him with flashcards of quotes from The Simpsons

12. Listen to everything Barney says

13. Stop keeping his pacifiers in electrical outlets

14. When you drop him, drop him on the side of his head

15. Avoid giving him a mustache with a Sharpie

16. Understand that a Superfund site is different than a super fun site

17. Remove the minibar from the nursery

18. Only one hour of Springer a day

19. Only natural sodas for his bottle

20. Stop confusing Baby Einstein with Young Einstein

21. Realize Twitter is no substitute for a nanny

22. Note that special brownies do not come in child-sized portions

23. Name him something like Breville or Trout

Shit. That's only 23. Anyone want to help? I know we can make it to 50!