Friday, October 31, 2008

A monkey, a haunted house, and Obama

The Halloween Run-down:

The day started early with a visit to the Cardiac Clinic

A blood draw with Super Woman

A monkey dancing in the hallway

And a hug with her favorite Heart Transplant friend,
Miracle, the Ladybug

Showing off her democratic pride underneath her costume

Starting out the evening with a

haunted house

under our neighbors' diningroom table

(Eden loved it!)

Trick-or-Treating in the wagon

The greeting committee passing out candy

Dinner with Barack Obama at the Kirchner's

And a tired kiddo at the end of the day...

Wednesday, October 29, 2008

Question number 3

When does Eden get her cast off....finally?

I am happy to announce that Eden is officially cast free! We are 5 hours + and going strong. I have to admit that I was a bit anxious tonight. She even watched a movie and drank her milk on the floor before bed - as to avoid any spontaneous falls, of course. Come on, you can't blame me after her last 4 hour interlude between appendage breaks!

She did come home with a removable splint to wear while playing or being active. They actually couldn't find a splint that was small enough so the doctor rigged her old cast with mole skin and velcro. You should of seen her eyes when he pulled that "bye bye cast" out of the trash. 100% betrayal. She actually said, "no way mommy!", but soon got over it when she figured out she could even slip it off without undoing the velcro. So much for protection.

Answer to question 3b: No news yet on her bone density. We were given differing opinions by her doctors (surprise) as to it's testing necessity. However, I am way too obsessive (surprise, surprise) to "wait and see". So...we are having extra blood drawn on Friday at her regular cardiac clinic appointment. We have been told that the medication she is on would not cause bone weakness and if it did, she hasn't been taking it long enough to have an effect. Cross your fingers for good news!

I have no pictures yet of her new beautiful right arm. I guess I was afraid to jinks it. I will take some tomorrow and post. For now, here is one of the "dancing queen" pre-cast (arm and leg). Enjoy!

Tuesday, October 28, 2008

Question number 2

On the lighter side... What is Eden going to be for Halloween?

Well, she has two costumes. You decide:

Option 1 : Monkey

Option 2: Doctor

In the wake of Eden's recent accidents - we just couldn't resist the theme.

"One little monkey jumping on the bed, she fell off and broke her arm."

"Mamma called the doctor and the doctor said...."

"No more monkeys jumping on the bed!"

Monday, October 27, 2008

Question number one

For the next couple of entries I plan to answer some of the questions we've gotten lately. I haven't focused much on Eden's health specifics or the ways in which this transplant has changed her (besides the obvious "saving her life" part). Maybe you've wondered the same things, maybe not.

Starting with the most frequent...
Is Eden eating? (say that 20 times fast)

Yes, Eden is eating better, much better. Knock on wood. As you have probably gathered, Eden has had feeding issues her entire life. Starting as an infant, she would cry, arch, and swat at the bottle. We counted her volume by cc's rather than ounces until she was around 15 months old. She tried every medicine the specialist could recommend, feeding therapy only gave moderate improvement, and the allergist came up empty handed. As a result, her weight and growth suffered.

Although we didn't see a night and day difference after the transplant (especially because she was vomiting with all the medicine), she has gradually started to feed easier and eat more, creating an entirely more pleasant experience. She does still drink her special formula (Alimentum) in a bottle, although now it is a calorie booster rather than the only calories she would get all day. I should be praising rather than cursing that bottle because it has saved Eden from a feeding tube.

She actually enjoys many foods. The toddler staples of course like mac 'n cheese, chicken nuggets, pizza, etc. But her palate is broadening, even to fruits and vegetables (a girl after my own heart). Yesterday I heard her say, "I like broccoli, I like peppers, and I like hot dogs." Well, two out of three ain't bad! The truth is, there are no "good" and "bad" foods in our house. She has even had ice cream for breakfast.

I don't want to paint too rosy of a picture. She still has her good and bad days and with every good day I wonder how long it will last or if she will vomit all that she has just ingested. Her weight has not increased since the transplant as they hoped. We add a calorie booster called Benecalorie to some of her food and I cross my fingers behind my back every time she stands on the scale. She is at 23 pounds.

I can not tell you how frustrating it is to have a child that doesn't eat. Literally won't put anything in her mouth. I have shed more tears over it than lost loves, car accidents, and acne combined - and that's a lot! So needless to say, I am more grateful than words can express for the spaghetti and meatballs, avocado, tomatoes, and peaches Eden actually ate tonight.

The weight will come next, right? Please say yes.

Wednesday, October 22, 2008

Ain't nothing gonna break my stride

So here it goes...

Eden was in a car accident yesterday. She is fine... everyone is just fine. Thank god. She was with Zander and our wonderful nanny, Nicole. To avoid bogging you down with details, I will just say that a very devastating situation was avoided and we are all so grateful for the outcome.

But I must admit, all I want to scream is "what the @#$% is happening?!"

I have spent a day or so processing all of my many thoughts and I will tell you what I have come up with, but first here are some of the things other people have said to me:

1. Bad things come in 3s: The broken leg, broken wrist, and now this accident. Remember, the transplant was a good thing, unbelievably stressful, but still good. Also, we are discounting all of the other hardship Eden has been through up to this point in her life. But who's really counting?

2. We, as parents, are being prepared for the teenage years. Cigarettes in the purse are going to be a breeze compared to these problems.

Yet even better...
3. We will be spared a difficult teenager all together because Eden's early years were so hard on us.

4. Now you are experiencing "normal" parenthood issues (broken bones and car accidents) verses the former heart condition, etc.

And my personal favorite...
5. God doesn't give you more than you can handle.

The truth is we will never know why all of this is happening or it's true linear progression. I definitely don't believe I am being dished all of this now only to be spared something more terrible later. And undoubtedly, we will handle whatever is next, as much as I like to think that my nerves can not take any more.

As for what I have been thinking: Eden is one tough girl. That's it. It's that simple. I was recently told by one of Eden's transplant nurses that I have been unfairly comparing Eden to "normal" kids her age (for size, feeding, etc) and if I continue I will never be satisfied. Even worse, I will never appreciate the amazing progress she has made. Instead, I should be comparing her to how far she has come, how much she has endured, and give more credit to her little body's miraculous ability to survive. In the last 10 weeks she has been through more "tragedy" than many people encounter in a lifetime. I've never broken a bone or had heart surgery, and all I did in the last 10 weeks was run. I just finished Denver's half marathon last weekend and was feeling pretty good, dare I say... tough. Oh no, Eden is the tough one.

P.S. Happy, happy birthday Jenny Bell. We love you!

Monday, October 20, 2008

Presenting Cast #2

After some delay, I am finally posting pictures of Eden's broken wrist. She is in a bit of denial about her newest "owie", as she doesn't really acknowledge it's existence. She is just starting to use both hands again. This once (nearly) right-handed 2 year old will soon be ambidextrous. She is even sucking her left thumb!

Eden saying, "cheese"!

Eden's cast turned out to be less intrusive than expected. She wore the splint for a week and will only need the cast for two more. The orthopedist also thought she could do with a half cast, rather than one that includes her elbow. This makes dressing her much easier. The best news, however, is that she can bathe! This cast, different than the one on her leg, is completely water proof. What a relief it has been to allow her to wash her hands. All together, this really was the best case scenario.

Tuesday, October 14, 2008

Home, home on the range

For a few days following Eden's latest fall, Brian seemed to be coaching me through each of my daily activities:

It started with... "get it together, Jane" (that's what he calls me) ...followed by scraping me up off the dining room floor as we headed to the ER with Eden. That was the harshest moment... they have been very gentle and subtle ever since.

Then, there was... "it's time to get out of bed" ,"could you call the pharmacy?" or "don't forget to stop by the grocery store".

And several times... "would you please eat something".

Finally, at Eden's transplant appointment on Friday, he asked for special permission to leave town and go to my parent's ranch in western Kansas. They could see the desperation in our eyes (I was on the brink of a complete meltdown) and agreed based on her heart's continued success.

So by that evening, we were in the car heading east... where the deer and antelope roam. This was truly divine intervention: two full days to relax in the solitude and relish in some good 'ol family time.
Eden had so much fun with her cousins, aunt, uncle, grandparents, and even the dogs. See cousins Campbell and Whitney below.

Thank you so much to "the ranch" for embracing, nourishing, entertaining, and replenishing us.

We will be back soon!

Sunday, October 12, 2008

Get out your umbrellas

The weathermen of emotion say, "When it rains, it pours". So it must be monsoon season at our house.

On Wednesday morning... Eden looked like this:

On Wednesday afternoon, Eden was doing this:

We were so happy!

And after a blissful 4 hours.... this happened:

I know, I know. I have thought and felt everything you are... especially shock and wonder.

The shortest version of the story is that Eden took a nose dive off of the kitchen chair and onto the tile floor breaking both bones in her forearm, just at the wrist. I have struggled with deciding how to share this news, as I am having trouble understanding it as well. How can Eden handle any more? A heart transplant, broken leg, and now a broken arm?

Rain, rain, go away, come again some other day.

Monday, October 6, 2008

Among the fields of gold

It was a magical day for the Murphy family this weekend. Eden left the city and entered the mountains for the first time in over 7 months.

In her short life Eden hasn't yet grasped her parents love for the mountains, but she could feel our energy and was just happy to be out of the house.

My dear Eden Raine, welcome back to the mountains. What a pleasure it is to bring you here. My favorite time of year.

"I never make promises lightly.... but I swear in the days still left, we will walk in fields of gold."