A health update

(Blogger is not my friend today... it won't post my pictures. Sorry!)

It has occurred to me that I haven't given much of an update on Eden's health lately. Some of her daily issues become... well... ordinary and not so news worthy. You do know that she vomits a lot? That she has days of good eating and those not so good? That we always put her on a scale with our fingers crossed behind our backs? Yep... so that's the normal stuff.

Then, I told you about Eden's cold she picked up somewhere around the middle of January? It was a doozey! It made all of the "normal" stuff I mentioned earlier a little worse and added a runny nose, cough, and less sleep.

Well, to top it off, we recently learned that Eden has a gross-motor developmental delay. This was very hard to hear and a little difficult to believe at first. I mean the child rolled over at 4 months, pulled up at 8 months, at walked at 10 months! How did this happen? According to Eden's therapist, she was on track until about the time that her heart got sick again. She was tired so we carried her more. She lost motivation and then her growth suffered. We didn't push much exercise because we wanted to help conserve her energy.

So, a year or more later, I guess this is what we get: a child whose cognition is right on track and has stellar fine motor skills - but can't jump very high, stand on one leg, or walk up stairs without assistance. You ask her to draw a circle... no problem. You want her stack 20 blocks... fine. She even knows the difference between an otoscope and a stethoscope! But walk any distance without being carried.... you're out of your mind!

Now that she has a new heart, she has started an exercise program of sorts. It mainly involves weekly physical therapy at a gym to strengthen her core and build her endurance. We have also added 3 block daily walks she must do at home. As much as I hate all of this, I do find humor in the idea of Eden working out. Maybe she needs some sweat bands? HA!

My good friend Nickie, a pediatric PT, says that she believes Eden's issues are more of a lack of exposure than a true delay. I hope this is true - only time will tell. Until then, it's another lap around the block for Eden - I am an exercise instructor after all.

P.S. Just when I was about to feel sorry for myself again, I found this article. A welcome reminder to always be grateful. My heart breaks for this family. They need our prayers too...

http://www.katu.com/news/local/40122542.html

A Single Parent Adjustment

Brian is currently working on a project in Aqaba, Jordan. While I do like to imagine my husband as Indiana Jones, camel back, ridding the world of drought and flood; I pray mostly for safe travel, successful endeavours and a QUICK RETURN. This single parent stuff is for the birds!

I am not sure who is having a harder time with Brian's latest work assignment, Eden or I. We miss him terribly.

Sooooo we didn't stick around the house for the constant reminder of his absence. Oh, no. We packed our bags and headed in the direction of family... i.e. help and entertainment. Luckily, my brother, Lance, and his family were vacationing in Salida, Colorado. Perfect timing for us and we scored with their generosity! Once again, Eden was in "cousin heaven" and I even relished in some extra naps and exercise.

Yesterday, we loaded up the car again. This time heading east across the Colorado border. The Ranch welcomed us with open arms, tons of new toys and most importantly, a buffer - my mom. I needed a break from constant parenting and Eden needed a new caregiver, fresh and energetic. I like to think that my mom needed us too, after all, she was all alone on the ranch this week.

I often think that Brian, Eden and I make the perfect tripod. She loves the balance of our two parenting styles and he and I can share in the duties of Eden's daily care. Whenever one of us is missing, the balance shifts. After a long period of time, you can almost see Eden start to walk at an angle (figuratively). I know this is true with other families, but since Eden's care takes some extra energy, I just can't sustain quite as long as I would like.

Take last Wednesday for example, we spent the morning packing up our necessary lives and running errands before heading out of town for a week and a half. Eden most certainly lengthens this process... Her meals take three times as long as an average child (if she eats at all), but since I was rushing around, I didn't push her to eat. Of course, we've got all of her medicines to account for, notify the pharmacies and doctors of our absence and load up on plenty of her special formula. Meanwhile, she conveniently starts unpacking bags, applying make-up on her face (Thanks Tia for teaching her that one!) and pulling out toys that have already been put away. Oh, and don't forget the temper-tantrum that occurs every time I tell her not to do one of these things. After I've had enough, I decide that it would be much better for her to be in the car while I'm loading - at least she's in a confined spot. I successfully get everything and everyone in the car, sit down in the drivers seat and start to back down the driveway.... when I smell the reason she was so calm the last couple of minutes. She pooped! Uhhhhh!!

We finally get on the highway heading west. I am looking forward to a couple of hours with Eden strapped in one place and occupied with her movie. I have my map, my coffee, and my book on tape - all in place. I'm set. I pull the first tape out of the package, push it into the tape slot, and it comes back out. I try again, same thing. I flip it over, nothing... I press rewind, nothing... finally I start to breathe a little deeper and Eden looks up from her movie. "Mommy, that's where my money goes." What?!!! Yep. And that was just the beginning of our trip together....

Here are some pictures of Brian's current adventures:

The world will be a better place

when there are more heart decorations and less health insurance complications!

Luckily, I've been consumed this week with... Eden's cold turning into an ear infection (her first ever!), health insurance woes and preparing for my thesis proposal defense.... otherwise, I would be out roaming the department store valentine isles and convincing myself not to buy another tacky heart. (I do pride myself in only choosing very tasteful, very classic heart decor, but of course, I am my only judge of that!)

Valentine's Day used to just be a so-so holiday for me. I could take it or leave it. Now, we can't get enough of the HEARTS! Both of this variety (man made)....

... and this too (all natural).

Because of the crazy week, we are a little behind in sending out our Valentines. Here's a little sneak peak.

Happy Heart Day!!

"Sleding is just like going down my slide!"

An afternoon at the Winter Park (kids) sleding hill.

On your mark, get set, GO!

She

could

go


all



day.

Back in the High Life Again

Last weekend we spent a few days at our friends' family place in Winter Park. I am continually amazed at our new found appreciation for vacation. It is no secret that we love the mountains and an added bonus to see Eden's enjoyment as well.

I have also noticed that the ratio of Eden's smiles and my picture taking are correlated. Hence, the multitude of shots below. I actually had to erase a few of Brian and Eden waving their hands for me to put the camera away! Here we are snowshoeing on a beautiful sunny morning. The pictures speak for themselves.

The best part, for me, was watching Chaco. He was in HEAVEN. I think he looked up at me more than once and said, "Now these are the parents I remember!"

"If you light a path for somebody, it will also brighten your path" -- Chinese Proverb

Grand Imagination

One thing I failed to mention in my last post... well, two actually. Eden's new imaginary friends. Look closely. They're there, sitting on those two chairs. Don't you see them? Say 'hi' to Shala and Fozzy.

I know this is great and wonderful and all that, but I am having a hard time. I am just not that creative or imaginative I guess. I am way too literal. I see life like a scientist. And mostly I blame myself for Eden's need to make up playmates. If I did a better job of parenting she would be more fulfilled. If I weren't so scared to have more kids she would have siblings to play with. Or the best yet... if I did a better job of being pregnant she wouldn't have gotten sick in the first place and then she could actually play with all the kids on our street. (Whoa... that was a good one!)

Well, Eden has picked up on the fact that I don't quite get the imaginary friends thing. She mostly leaves me out of it. But I have caught on to a couple of their conversations and it really does amaze me. They go to "school" together, they go on adventures, they color and "work". They even argue! How is it that imaginary friends have separate opinions? Am I supposed to make her share with them too?

I should say that I will be forever grateful for Eden's uniqueness. She continues to broaden my mind and make me laugh. Who knows if she is this way because she's 3 (almost), has some unknown syndrome, or has lifelong health complications. At this point, it doesn't matter anymore. One thing is for sure, she is the one and only Eden Raine.

All dressed up... no place to go

Eden has been sick for almost three weeks. She has a cold of some sort and is quite the champ at it, I might add. This sucker will not go away. We finally had some blood tests run at the end of last week to look for specific "rejection causing" viruses. The results came back today: negative. This is good news of course, but a secret little part of me was hoping for an anti-viral to knock this out. But alas, we are left with waiting it out. Luckily, Eden has a high tolerance for such annoyances. However... she has had it with the solitary confinement... the fun of orange juice shots has worn off... and if she comes within even eye sight distance of that blue bulb syringe she falls to the floor in hysterics. It was even entertaining to hear her say "I'm sit" (rather than I'm sick) for the first couple of weeks, but now we are all ready for it to be over.

Don't worry, in the mean time, I have not slowed down my picture taking one bit. Sure she is sick and I should probably get the flash out of her face... but I can't help myself. It's an addiction.

Here is some of what you've been missing:

Mother-daughter spa day (at home)

Indoor exploring

Outdoor bundling

Tinkerbell dancing

Midnight snacking(No picture series of Eden can ever be complete without her favorite outfit - Nothing at all!)

P.S. That's a temporary tattoo on her belly

P.S.S. Yeah... finally new back splash!