The Long-Awaited Website is Here

You heard it here first, folks. The long-awaited Emma's Hugs website is now up and running and looks marvelous, I might add. In case you're new to the blog or don't remember what Emma's Hugs is, let me catch you up to speed...

Kelvin, my best friend and fabulous husband, is a thinker. Some of you are probably aware that he spent many days and nights in the Texas Medical Center when his dad was battling cancer. Many dollars were given to the parking machines during this time. It's amazing how quickly $12/day parking adds up and begins to put a strain on one's budget. Kelvin had the thought then of how nice it would be to have an organization that would help people cover the costs associated with spending any significant amount of time in the med center. Well, after Emma was diagnosed, Kelvin begin thinking again. He found a productive way to channel all of the negative energy that comes with grieving the terminal diagnosis of one's child into something wonderful. Additionally, he noticed the incredibly positive impact that Emma was having on everyone who heard her story. That influence needed an environment to thrive, and thus Emma's Hugs was born. Emma's Hugs exists to help pay for parking and food expenses for those who find themselves in the medical center for any length of time. So far during 2009 Emma's Hugs has paid for over 1,000 days of parking in the medical center. Please stop by and visit our new website for information, buy merchandise and to donate if you so choose. You can click here or go to www.emmashugs.com

I want more!

Cora is almost 6 months old! Tomorrow our little bundle of joy will be 1/2 a year old. I cannot believe it. I was looking through my baby nutrition and feeding book and realized it's time to start feeding the little doll. I guess I should have clued into that fact when she was grabbing at my food and staring at us like a dog stares at a steak while we eat. I do things a bit differently around here. The first food she ever experienced in her little life was avocado. Do you think she liked it?



She couldn't get enough! I'm so glad she's not picky so far.




Nothin' like a good nap after a good meal!

5, 6, 7, 8

I was in the kitchen one day, and when I came around the corner, this is what I saw...



Glad I had the camera setting on video. If you'll listen, the background vocals are Emma. She was probably in her high chair eating or something. Glad I have her voice recorded. Wouldn't it be lovely to hear it today?

Mary Poppins

I love musicals. Mary Poppins is one of my favorites. I love it when the kids pull it out to watch it. Wouldn't it be nice to be like Mary? You know, snap your fingers and things magically and neatly go where they belong. Or when you laugh you end up on the ceiling. I would love to draw chalk pictures of wonderfully fun places and jump in to experience them. Wouldn't it be great fun to slide up the stairs? How about say the word supercalifragilisticexpialidocious to make anything and everything better? That's what I'm talkin' about!



We just returned from Luke's soccer game. He's doing such a good job this year. Last year was more of a learning how to stay motivated on the field year. This year he's stealing the ball, dribbling it down the field and scoring!! Whoo Hoo! I'll have to remember to take some video at his next game. You gotta see this little dude in action!

Have a great weekend.

Baby Got Back

(Author Warning: Kelvin)

Have I ever mentioned that Christy has...just kidding...HA! Gotcha!

So anyway, this morning Christy was giving Cora a quick bath in the sink and I just had to take a picture of her cute, fat, little bottom (again, this is Cora I am referring to).






She is TOTALLY chunking up. Look at those rolls! For Pete's sake she has "cankles"! All of our kids have done this. This is actually one of my bragging areas about Christy. A few factoids for your consideration:

* All four kids have been 100% breast fed
* We have never bought the first package of formula
* Carleigh weighed 23 pounds at 1 year old...and was still 23 pounds at 2 years old
* At one point we had 54 bags of milk in the freezer (and a chunky kiddo). I saw $$$ signs and threatened to sell them on Ebay. Needless to say, that didn't happen.
* The older kids can mimic the sound of the breast pump! How funny is that?

OK, I have to wrap up this post and get ready to leave. Christy will be home is 10 minutes and I will immediately leave so she can't hit me when she reads this!

Have a great weekend.

Inquiring minds want to know

I was asked to give an update on Emma. I guess I don't do a very good job of keeping you up to speed on her physical condition. Frankly, I guess I don't realize how much her condition changes from day to day or week to week. When I do realize it I guess it's not one of the things on the top of my list of favorite things to talk about. With that said, I will try to do better. Emma is hanging in there. She is such a little trooper. She got a new hairdo yesterday and looks adorable, of course! We have a hospice group for children called Compassionate Care who sends a nurse out once or twice a week to check on her. Hospice for kids is a little bit different than hospice for adults. They only provide services for terminal patients, yet realize the child may have several more years to live. They are there mainly to make life easier for the family by giving support in whatever way they can, and to help make Emma as comfortable as possible. They are the liaison between all of the doctors and the family so that everyone is on the same page with meds and care for Emma. They are wonderful! Emma hasn't been doing liquids well at all for a while now. I was giving her Tylenol last night and she choked really badly. We have to mix liquids with baby food or thicken them with a thickener. She only eats pureed or baby food, and sometimes feedings are a challenge for her. She tends to hold the food on the roof of her mouth or her tongue pushes it out. She grows tired quickly, so her occupational and physical therapy sessions, teacher, eating, bathing and any other activity make her ready for a nap. Sometimes she sleeps well and other times not so much. Constipation is a constant battle. It seems she gets lined out for a day or two, then we go from one extreme to the other. Of course medications are a source of constipation, so they contribute to the vicious cycle. She can't sit unassisted, can't hold her head up for more than a few seconds and battles with spasticity where her arms and legs stiffen which seems to give her pain or discomfort. We have also learned just recently she has a very irregular heartbeat which is probably due to that part of her brain malfunctioning. Even as miserable as she sometimes seems, we still see an occasional smile, a slight grin or a sweet expression. Those moments are treasured. Thanks for your continued prayers.

Do you ever?

Do you ever feel like it wouldn't be a big deal at all if you just stayed in bed for a week or so, or you didn't get out of your recliner, or you had no motivation to get anything done? Maybe it's the rainy few days we've had around here (probably not), but I'm there. Some days are great and I seem to move along quite well and successfully complete tasks great and small, but others, like today, I feel like curling up in a ball and living out of the recliner. Do you ever want to punch someone who's acting like a jerk? Do you ever want to ram right into someone who's driving like a fool? Do you ever wish you could eat the entire cake or container of ice cream without any side effects? Do you ever wish someone could turn back time and fix the bad gene that has caused so much destruction, pain and heartache?

I do.