Home

Sometimes, in the storms of life, tender mercies occur; sweet moments where you can see beyond the current struggle and relish in a beautiful miracle. 

Elisabeth has been suffering lately. There have been moments where she is comfortable (see below) or where we have her drugged enough that she thinks she is comfortable, but mostly she hurts. 

However, this past weekend a small miracle occurred: Elisabeth said another word! 

For those keeping track, that brings her vocabulary to a total of three words! 

1) Again 

2) Mama 

And her third word is.... home. 

What a beautiful word. A word that for her is extremely significant. You see, her life is spent away sometimes; in hospitals and doctors offices. Those are places of uncertainty - where scary things can happen.

But home...home is safe.
Home is familiar.
Home is happy. 

(Do you see that rug? Is that not the most splendid rug ever? A fellow hydro-mom, Dana, sent it to Elisabeth. It is just what our family room needed - the very thing. Thanks, Dana!) 

(Can you see the look on her face after she repeats a word? She knows she has done something big!)

Home.

Under Lock and Key

For years we have threatened to put a lock on the pantry.

 

 We finally did it. 

***Elisabeth is still struggling...though I would say that this last week was much better than the previous one. There is no place else to take her in Washington State. Currently working on the what-to-do-now plan. These things aren't easy.

***Even though she has had some serious struggles as of late, Elisabeth has some really exciting news to share, too. Check back tomorrow!

 

Formulating a Plan

 

We are home. 

It always feels good to be home after living in a hospital. It makes you appreciate things - like two ply toilet paper. 

We are currently focusing on keeping Elisabeth comfortable. Fortunately, Seattle Children's Hospital armed us with an enormous bottle of valium ('twas the least they could do). 

We are also busy formulating a plan; figuring out what do and where to go. Because there's one thing I know for sure: we can't give up. Elisabeth needs us to find someone with answers. I cannot allow her to continue living in pain - it's simply not an option. So onward it is.

My goal is to get her better by her birthday. 

 (Can you believe that my little Queen Elisabeth will be turning 5 next month?!)

Pain and Suffering

Sadly, the doctors here at Seattle Children's Hospital are out of ideas. They claim that the shunt is perfect; that it can't be contributing to any of Elisabeth's current issues. And with that, the neurosurgeon's have washed their hands of her. 

I spent a lot of time yesterday in tears - it's the first time I have cried (here). I was sure they would help her - they are ranked in the top ten nation wide, for goodness sakes. But instead they just threw in the towel...it was devastating to me. 

So today we plan to leave. It's time to go somewhere else. Elisabeth needs help. Desperately. I just have to find someone who is brave enough to take on the task of figuring out what's wrong.

Wish us luck.

[A small sample of what's been going on for the past 2 1/2 months. Sometimes for hours and hours and hours on end.]

Keeping Content

 

I have mastered the art of keeping content within the walls of a hospital for days and weeks on end. 

I require only three items: 

My Kindle, a spoon, and a big ol' jar of Nutella.

Elisabeth Update:

On a more serious note, Elisabeth continues to suffer. Yesterday was rough for her...lots and lots of agonizing pain; sometimes we are more successful at controlling it than others (yesterday we were unsuccessful). The plan for today is the shuntogram. I am keeping my fingers crossed that it reveals a big problem. I want a problem! Is that too much to ask??

Day 6

Images from room 2010... 

 

Update: We were much more successful at controlling Elisabeth's pain yesterday. So that is good thing.

They did another head CT as well as abdominal and everything came back looking splendid. In fact, her ventricles were even smaller than they were in Wednesday's CT. Therefore, neurosurgery is claiming that this is not a shunt problem - and it may not be - but I still have my suspicions.

For the past two days I have noticed fluid accumulating around the shunt. It will get big and puffy, and then about six hours later it disappears. Elisabeth has never had fluid accumulate around the shunt, and I find it hard to believe that it isn't somehow related to the pain that she has been in.

So, as a compromise, the neurosurgery team has agreed to do a shuntogram tomorrow to see if it produces any abnormal results. Is it sad that I am hoping for abnormal results? I want to find a problem to fix already.

Lastly...did you see that Elisabeth's giraffe is on the cover of this month's issue of Martha Stewart Living? (Thanks for bringing that to my attention, Tiffany!) 

The Giraffe

Look what showed up at Elisabeth's bedside... 

  

The big girls promptly found a good use for it. 

   

I think he needs a name.

Elisabeth update: Yesterday was not good. Elisabeth thrashed in pain and agony for 8 hours straight. They tried giving her morphine - but it didn't do a thing. Two hours later they gave her a double dose. Still, nothing. Eventually her tired body gave in to exhaustion and she drifted off to sleep. And so did I.

The doctors here are still searching for answers. A CT of her abdomen is scheduled for today.

On a happier note, Elisabeth was moved to a different floor yesterday where we have our own room and it is ENORMOUS. Which is good, because I have a feeling we are going to be here for a while...

A Bit of a Challenge

 

 "This is Elisabeth's best hospital trip...ever!!" 

 -Lorelai 

The big girls have been living it up while Elisabeth has been confined to her hospital bed; sight seeing around Seattle, going to the zoo, shopping at the American Girl Doll Store. They don't see these hospital stays as such a negative thing :)

As for Elisabeth, we still have no answers. Doctors come and go all day long and I find myself retelling her medical history time and time again. 

 Last night brought more swelling around the shunt, more vomiting, and more pain and thrashing. 

 I think they are finally beginning to realize that she is going to be a bit of a challenge...

Seattle Children's Hospital

On Tuesday, Elisabeth was taken four hours by ambulance from our home town to Seattle Children's Hospital. She had started vomiting in her sleep and we were not able to wake her.

Upon our arrival they did a CT which showed enlarged ventricles (yet again). Her shunt setting was off (yet again), causing a build up of cerebral spinal fluid.

Elisabeth continued to sleep and vomit all day Tuesday and partway into Wednesday.

Another CT done yesterday showed ventricles returning to her normal. (Four CT's since Friday if you're keeping track).

So that's the deal with the shunt.

However, aside from that there is still a big problem with Elisabeth. For more than two months now she has spent hours on end every day thrashing in pain and agony. Last night, the doctors here at Seattle Children's witnessed one of these episodes. It's heartbreaking and shocking to see firsthand - almost like a person being tortured. Neurosurgery doesn't think it's shunt related and is calling in neurology today to look at her.

Details to come as I have them.

Donald turned 35!

While it's true that Elisabeth and I spent a majority of the weekend in hospitals, both here in town and in Spokane, I had to find time to do something else very important...

Celebrate Donald's 35th birthday!!

Because even though life throws you some curve balls, it's essential that you don't let it stop you from living...and enjoying...and from carrying on.

Here's a peek at Donald's birthday celebration:

I made this for breakfast - breakfast braid stuffed with ham, eggs, onions, red bell peppers, and green onion.

A crown made by Alexandra.

 

Elisabeth update: Her neurosurgeon and pediatrician are both gone this entire week. The local hospital as well as Sacred Heart in Spokane have said that there is nothing more that they can do. We are leaving today to take Elisabeth to Seattle Children's Hospital in hopes that someone there can help her.

The Queen is Suffering

There is something seriously wrong with Elisabeth. There has been something seriously wrong since the beginning of June...and things are only getting worse.

We spent the past four days in and out of hospitals. We had a shunt problem arise that led to enlarged ventricles and fluid accumulation around the shunt. It was an easy enough fix. But it only fixed that problem.

Who will be able to figure out what's wrong with my little girl? Why she screams in agony? Why she thrashes so violently, almost as if she is trying to escape her body?

And to make things worse, her seizures have returned with full force. She probably had close to 50 seizures yesterday ( I stopped counting at around 30). 

I had doctors at two hospitals this weekend tell me that they have done all they can do. They have seen her - seen her suffering - but they are at a loss. 'Take her to Seattle' is the recommendation.

Elisabeth's neurosurgeon has been out of town. I am hoping that he is back in the office today (though I have heard conflicting reports as to whether he will be). He is my last hope. He has seen her like this before. If he is not back today, then it's off to Seattle; to a new set of eyes and hopefully to a new set of ideas.

 

Doomed

The sight of this on Wednesday afternoon was enough to make me go into a cold sweat.

 I have to have a root canal done today. 

This is bad news considering I have dental phobia. 

 I developed this case of dental phobia some 6 or so years ago during a root-canal-gone-wrong. Let me just say: it was one of the most painful experiences of my life. Similar to the pain I felt with my spine last summer (except with the root-canal-gone-wrong the pain only lasted an hour or so and with my spine the pain went for something like 6 months). 

I had an appointment with the endodontist a few days ago to discuss my fear; to explain to him that I will not be able to go through with it unless he agrees to change my state of mind. So I left with a prescription in hand for a delightful little pill that will make all my worries go away. And I will be taking said pill at precisely 3:00 this afternoon. 

For the record: I cannot be held accountable for anything I say or do while under the influence of said pill. (Donald will provide video footage, I have not doubt)

Growing: Part VII

Well look at that - my hair is long enough to curl now!  

[August]

A Look Back

[July]

[June]

 

[May]

 

[April]

  

[March]

  

[February]

  

[January] 

I know I hinted that my hair might be a different color this month. That didn't happen - obviously. But it might be happening soon. Might. 

***What's this all about? Click here.

My Three Daughters

The Bookworm

  

 The Ball of Energy 

  

The Forever Baby