Thanksgiving Review 2014

Weather is the craziest thing. One week to the day before Thanksgiving school was canceled due to ice. It was freezing! And then, on Thanksgiving Day, the weather was up in the mid-sixties! It was so delightful! I flung the doors wide open and let fresh air fill the house. Then I took Elisabeth on a walk - because if there is one thing she deserved after the hard two weeks she went through, it was a walk in warm November air.

The girls hopped on a scooter and bike, Brigitta the Royal Pup rode shotgun on Elisabeth's stroller, and we set out on an adventure. You'll notice Elsa's choice of clothing...it was that warm.

 

Donald was up on the roof when we got home. When there is a random warm day at the end of November, you use it to put up Christmas lights...even if it is Thanksgiving.

There was no reason to go inside, so the girls dragged a folding table out of the garage, a bunch of Barbies, and had summer fun...in late autumn.

 

And Elisabeth, well, we rolled her feeding pump on out and she enjoyed lunch on the front lawn.

  

Later it was the usual - turkey, stuffing, mashed potatoes, pumpkin pie...

And to end the night we watched Elf to kick off the holiday season.

"I just like to smile! Smiling's my favorite."

-Buddy the Elf 



p.s. Two days later it was snowing! Good thing Donald got those lights up!

My Baby and Me

I love Elisabeth. 

She is so unique, so special. When I look at her, I don't see her as handicapped, or in any way lacking. I see a perfect being. I see someone who is wise and intelligent - not in the traditional sense - but in a way I can't describe. Like she has all the secrets of the universe tucked away in her mind.

   

[Photographs by Lee Ann Norris.]

It's an honor and privilege to be her mother.

Just Say No To Drugs

Things have been rough. Last night I was near tears, and I think I've only been in tears due to Elisabeth-related-things three other times in seven years. When she went in for surgery two weeks ago today, I forgot about her previous morphine dependency and how dangerous it would be to reintroduce it to her body again. When we came home from the hospital her behavior seemed very odd. It didn't seem like pain, more like, discomfort. For a day or two I hypothesized that she was feeling uncomfortable since she no longer had the capability to burp (the new wrap around her esophagus prevents that). A reader of this blog in fact emailed me multiple times with advice on venting techniques (which have worked splendidly!). But still, the strange behavior continued...got worse in fact.

Then last Friday, Donald mentioned that it reminded him of the withdrawal symptoms she experienced in 2012. That's when the light bulb went on and we began to understand what was happening: morphine withdrawal.

We immediately took her to the doctor where our suspicion was confirmed. She was prescribed a methadone wean to help her get off the morphine with minimal discomfort. The methadone seemed to help a little, but not much, so the pediatrician suggested we hold her at a steady dose of methadone and start weaning in a week. But over the past few days Elisabeth has been wiggling non-stop and constantly rubbing her face. By last night her face was bright red. Apparently the methadone is causing her body to itch and Elisabeth is so uncomfortable. The way she tosses around it as if she is trying to escape her body. Once again I consulted with the pediatrician and was prescribed Benadryl to [hopefully] counteract the itchy side effect of the methadone. Fail. If anything the Benadryl had a reverse reaction, making her more antsy. So, I gave her Clonidine, a prescribed medication with the sole purpose of allowing her body to relax and sleep. It has always worked like magic during times when she has been agitated, but last night it did no good.

I laid in bed with Elisabeth for hours while she tossed, turned, and rubbed her face. I could see how exhausted she was but her body could not fall asleep. All these drugs...what a mess. As I looked at Elisabeth it all seemed so wrong. She shouldn't have to suffer. And even worse is knowing that she doesn't understand what is happening or why. That's when I almost started crying. I have dedicated my life to ensuring Elisabeth is comfortable and happy. But everything I try seems to backfire; make things worse.

Around midnight Donald called a friend and together they gave Elisabeth a priesthood blessing. Almost immediately she calmed down and fell asleep. She slept straight through until morning, giving her body the rest that it so desperately needed. How grateful I am that our prayers were heard. I was once again reminded that we have a loving Father in Heaven who is ready to help us and bless us as we face challenges and trials. How grateful I am.

Now we face a new day and I have decided to begin the methadone wean once again. My instinct tells me that I just need to get her off of these drugs. Please say a prayer for Elisabeth, that she will be able to manage the symptoms of withdrawal and return to normal soon.

Gems

One of the best parts of motherhood is finding gems like this around the house:

  

[Created by Alexandra]

 

[Created by Lorelai]

Enter to Win!

To kick off the new ClaudeCoats.com Facebook page, we are offering a 10x15 inch giclée print of 'Night and Day', Claude's acrylic painting of the Taj Mahal. All you need to do is like us on Facebook and you are entered to win! To earn a second entry, share our status regarding the contest.

Contest closes at midnight tonight, so do not delay!

Winner will be announced tomorrow!

Click here to visit the ClaudeCoats.com Facebook page - make sure to click like!

Lorelai, Meet Lorelai

Lorelai was born on a Tuesday night. Tuesday was the night that Gilmore Girls - my favorite television show - used to air on. I remember thinking, 'She needs to be born by 8:00 PM so that I can hold Lorelai while watching Gilmore Girls'. Well, I accomplished my goal, she was born in the six o'clock hour, but I ended up in the OR due to serious complications (I lost more than half my blood).

But back to Gilmore Girls. I have always looked forward to the day when I could share the series with my own daughters - especially Lorelai, since she is named after it. (The main character is Lorelai)

Today was that day.

School was canceled due to ice. We stayed in comfy clothes all day and kept Gilmore Girls on by the hour. The girls loved it! And I loved watching it again after all these years. It is an absolutely delightful show!

 

Chillin' and watching Gilmore Girls.

Shakespeare's Richard III

I am so excited about the production I'm a part of this week: Shakespeare's Richard III at Columbia Basin College. There is just a small music ensemble: one violin, one viola (me), two cellos, and a percussionist. And get this - we are playing an original score. Last night was the first dress rehearsal and it went quite smoothly (even if it was a FIVE HOUR REHEARSAL). The interesting thing about this show is that rather than being down in a pit, the string ensemble is up in the rafters with the lights. It is so awesome! I have a birds eye view of Richard III for the next 5 days!

I don't know a lot about Richard III (my dad is rolling in his grave right now), so I am going to do some research before rehearsal tonight. I'll tell you this though - it is not Much Ado About Nothing (my favorite Shakespeare play). What a completely different feel! Where Much Ado About Nothing is light and witty, Richard III is heavy and dramatic. 

I guess that's the difference between a comedy and a tragedy! :)

 

Come if you can. 

This performance is absolutely stellar.

Nov 20-23 at 7:30 and Nov 24 at 2:00

All performances at Columbia Basin College.

A Cozy Homecoming

[A snapshot of the big girls visiting Elisabeth in the hospital on Saturday.] 

We are home. Home sweet home. When we arrived everyone was gone, but Donald had made special preparations for our return. The house was neat and tidy, a peppermint candle was burning, and there were blankets laid out in front of a roaring fire for Elisabeth and me. It was the most cozy homecoming!

 

I am slowly increasing her feeds. Currently she is getting 2 ounces an hour via her feeding pump. The surgeon used a third of her stomach to create the wrap around her esophagus, so it'll take some time to get it stretched out again.

Elisabeth seems rather uncomfortable. She isn't crying, but constantly tossing and turning. It's hard for me to determine whether this is discomfort due to surgery, or because of the feeding. Too much food too soon? Air trapped that can't escape because the wrap? Pain at the surgical site? I simply don't know. So I'll just do the best I can to keep her comfortable and happy. Right now we're listening to the Beauty and the Beast soundtrack. That'll help, won't it?

Because Nobody Likes a Tube in Their Nose

Having a tube in your nose is a real annoyance.

 

 

So despite how it looks, this was a joyous moment for Elisabeth:
 

   

 

 



Sweet Relief...

 

 

Day 4 - We're Great!

 

One of the hospital chaplains stopped by to see how Elisabeth and I are 'coping'.

'We're great!' I told him.

And we are. Yes, we've been cooped up in a tiny room since Wednesday morning, but who says that's bad? Especially when it's 20 degrees outside. Hunkering down and snuggling is definitely a plus!

Your How-To Guide For a Comfortable Hospital Stay

Elisabeth still hasn't woken up. And I mean really woken up. There have been a few times when she has opened her eyes, but within minutes she is back to dream land. She's only on Tylenol, so it's not that they are drugging her heavily. Most likely it's just a coping mechanism to escape the discomfort, tubes, and wires. I'd sleep too if I was her.

Anyways, I've settled into room 340 comfortably. I know we're only expected to be here five days or so, but I still figure you can bring a few essentials to ensure a comfortable stay:

A) Snacks

B) Books, catalogs, and my Kindle

C) Drinking water

And perhaps most importantly...

D) Toilet paper

Got it?

We are here:

 

Ciao for now!

Recovery - Day 2

Things are going well here in room 340!

After sleeping for 24-hours straight, Elisabeth finally opened her eyes this morning.
Right now she is laying in bed very still, just staring - contemplating life, I'm sure.

[Our view.]

It's supposed to start snowing any minute back at home and I am a wee bit jealous. Here in Spokane it's all blue skies - freezing, but blue skies. At least it allows for glorious morning sun here in room 340.

[Thank you for her dog, Mom!]

Yesterday, a volunteer from the gift shop arrived with a very large stuffed dog. I started laughing; why hadn't I guessed something like that would be coming? My mom has a long standing tradition of sending over-sized stuffed animals to my children. Surely you remember the gigantic bear from when Lorelai broke her arm. And our near-famous giraffe which arrived during one of Elisabeth's hospital stays in Seattle.

Speaking of over-sized stuffed animals, have you seen the 8-foot bear at Costco? I could not believe my eyes! It is enormous! My mom thinks she needs to buy it for us - you know, since it's tradition and all. Ha!

Now that's a big bear!

Surgery Day

As I'm sure you've heard, the temperature here in the northwest has plummeted.
It is freeeeeeezing - and I mean that in the literal sense of the word. It is the kind of cold that bites, and while I'm no stranger to cold weather, the fact that it came on so suddenly makes it feel twice as frigid! I felt guilty pulling Elisabeth out of bed at 5:45 to put her in the bitter cold car.

Despite the temperature, Elisabeth wore a smile on her face this morning. I captured a few pictures as quickly as I could because smiles are far and few between these days:

When the surgeon came in to chat I had to remind him that he was supposed to do a pyloroplasty. Thank goodness it came up! He was only planning on the fundoplication - I would have been so frustrated if the pylorolasty was forgotten! Good thing I was on my A game.

And then off she went:

The surgery appears to have gone well. Of course the real test will be if she keeps her food down when her feeds are permitted again (whenever that is...)

 

The incision site:

They are using her g-tube to drain excess junk from her stomach at the moment
(thus all the blood in the tube).

 

Sleep my baby, sleep.