Wednesday, February 29, 2012

Supersized

Now that's a strawberry!





Something tells me we are going to have strawberry shortcake for dessert tonight.

In other news...my daffodils are just about to open up...

Tuesday, February 28, 2012

Back to the ol' Pump

I love Elisabeth's g-tube. Everyone who knows me knows that. It's hard to believe that she's only had it for 22 months - it's seems like it's been a lifetime! I simply can't imagine her eating in a more - shall we say - traditional way.

Anyways, Elisabeth has been getting bolus feedings for quite some time now. What this means is that we can feed her at set times by simply pouring her formula into a syringe and letting gravity pull it down into her stomach; it's quick and it's easy.

However, she has really, really been struggling with her bolus feeds lately. Everything that goes in comes up. Seriously, all day long I am having to change her clothes because she vomits it all. The reason this is so frustrating is because she had a fundoplication done at the same time her g-tube was placed - this surgery is supposed to prevent anything from coming up the esophagus. Well, obviously it has loosened - because everything comes up.

So yesterday we [sadly] decided it was time to go back to continuous feeds. This means that Elisabeth will be hooked up to her pump a majority of the day. The pump allows me to set a specific rate of flow and then it slowly drips in. But get this - last night, after being hooked up to her pump for 4 hours, she threw up again! Arrgg! I couldn't believe it. So this morning when I hooked her up I backed the rate waaaaay down; we'll see just how low we need to go to get her to tolerate her feeds again.

Am I bummed that we have to go back to the pump? Certainly. It's a bit of a hassle having to have her connected to tubes and machinery all day long. But regardless, I am still extremely grateful for her g-tube. To have a safe and effective way to provide nutrition and medications to Elisabeth is nothing short of a miracle in my eyes.

So continuous feeds it is. (For now, anyways.)





[Stopping last week to give Elisabeth a bolus feeding.]

Monday, February 27, 2012

Let's Talk About the Weather...

Three days ago Elisabeth was outside enjoying her first official Taga ride of the season - with no coat.

'Hooray, Spring is here', I thought.




But this morning I awoke to find this out the back window:



Weather can be such a tease at times.

Friday, February 24, 2012

Around Our House...

Rainbows













Thursday, February 23, 2012

A Few New Pieces...


[Portraits by Charlene Hardy Photography]

So I am madly in love with this new grouping of canvases. My friend Charlene took these photographs last summer and I think they just turned out dreamy. In fact, I will admit to sitting in the chair across the room just to sit and stare at them. The lighting, the colors, the children - it's all so beautiful.

Also new to our living space is this chair:



Is it not just divine?! I had to sit patiently for six weeks and wait for it to arrive, but it was well worth it. It adds just the right pop of color to play off the other blue furniture in the room. And how about that fabric!? I think it is absolutely whimsical - if you look closely you can see a mama bird feeding a worm to her baby.

So come on over and have a seat, okay?

Wednesday, February 22, 2012

The Yoga Master

Because even 30-year-olds like surprises.







Thank you to my partners-in-crime, Esther and Donald!

Tuesday, February 21, 2012

That's My Sister!

30!



Could you do this when you were 30?

Jennifer can!



Happy 30th
Birthday
Jennifer!!!



Monday, February 20, 2012

Presidents Day



[Me and Elisabeth, last night. ]
[I love having a forever baby. Elisabeth, at four years old, can still curl up into a snuggly little ball in my arms
.]

We are in the midst of a four-day weekend at our house. And to make the most of this four-day weekend, I wrote out a list last Friday with a million-kajillion things to do on it. And, I'm proud to say, we have accomplished most of those said tasks.

Right now Donald is downstairs, busy making breakfast. He invited the neighbors over for a Presidents Day Brunch (and promises that he will have the house back to spotless afterwards).

Also - in honor of Presidents Day - Donald made a little deal with the girls: if they can recite all of the presidents - in order - they will earn $10 each. Now you must understand that our children are highly motivated by money; Alexandra especially. She has been walking around with a book about presidents tucked under her arm. Last night at bedtime she announced that she was ready to give it a go, so we told her that she could recite them during breakfast today. And Lorelai's not too far behind her, last I heard she had twenty or so of them memorized.

Happy Presidents Day!

Friday, February 17, 2012

Our Hawaiian Getaway: Part IV

Onboard the
USS Bowfin













I love boat shoes.

Thursday, February 16, 2012

Tennessee, Here We Come!

Yesterday morning Elisabeth's seizures were just terrible. She lay on the floor in the family room, her small body convulsing uncontrollably. I sat next to her, whispering softly, 'Mama is here'. And when it was all over she fell fast asleep, her brain exhausted.

Elisabeth's seizures have been getting increasingly worse.

We need a change.

So Donald and I have made the decision to take her to Le Bonheur Children's Hospital in Memphis, Tennessee. They have a NAEC Level IV Accredited Epilepsy comprehensive epilepsy program...and an epileptologist who comes very highly recommended (people take their children to him from all over). Now for the exciting news: Le Bonheur called yesterday afternoon and Elisabeth is scheduled to spend the week of June 25th in their hospital! They promised that by the time we fly home there will be a plan in place.

I am so hopeful; I feel like this could be it! If there's a way to get Elisabeth's epilepsy under control, I'm confident that they will be the ones to do it. And if not, I will know that we have tried everything possible to help her.

After the children got home from school I had them move the blue flag from Hawaii to Tennessee on our world travel map. The girls are thrilled to be coming along on this little adventure; they love Elisabeth dearly and have always been active participants in her health care, so this will be a very rich experience for them too.

Memphis, here we come!





Wednesday, February 15, 2012

Lovey-Dovey

'twas a fine Valentine's...




Elisabeth's goodies.


And for the big girls.


I need to take her to Paris just so she can wear that dress to the Louvre or something.


A lazy morning (with Lizzie center stage).


Lorelai stayed home for the morning. While in the next room I heard her say to Elisabeth, "Here's your binkie and here's your monkey. There, you're all set. Aren't you glad that Sissy is home?" They have a special bond, those two.




I left her legs brace-less for the ride to school because by-golly I wanted to see her in those sweet little shoes (and they don't fit over said braces).





Love.

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