Monday, September 28, 2009

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

Saturday, September 26, 2009

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!

Tuesday, September 22, 2009

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?

Saturday, September 19, 2009

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.

Friday, September 18, 2009

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.

Wednesday, September 16, 2009

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.

Monday, September 14, 2009

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.

Sunday, September 13, 2009

for your viewing pleasure

Emma was a newborn, and I was downstairs nursing her or something like that. My "big" kids were upstairs. Things got really quiet which only happened when the kiddos were sleeping. I went upstairs and realized the "big" kids were doing something mischievous in the bathroom, so I quickly went out to the man cave and told Kelvin to grab the video camera and catch whatever it was they were doing on film. Here is what we found...



So glad we have this precious memory recorded. I love hearing their precious toddler voices. I try to remind myself every day how little they are. I'm trying to soak in the sweetness of the everyday from each of our gifts from God. Some days are harder than others, but I keep trying.

Friday, September 11, 2009

Ballerina girls

Cora


Emma


Carleigh


I'm sure you'd love to see the one of Luke, but I'm not gonna show it to you! Have a great weekend!

Thursday, September 10, 2009

my mind is playing tricks on me

Sorry it's been so long since you've heard from us. We were out of town for the holiday weekend. We went to Rockport and had a great time! We took the boat and enjoyed being out on the water with the fam. Kelvin's mom and nephew came down for one day, and we pulled the kids behind the boat on the big 'ol tube! They squealed and held on tight and had a complete blast. The only thing that could have made it any better would have been piling Emma on there with them. She enjoys being in the boat so much though. She fell asleep quickly after we got moving several times. The big kids and Kelvin did a little fishing too. How cute are they?!








We've had some pretty rough nights ever since I mentioned that Emma had been sleeping well. I should know better than to say something like that! Anyway, Emma didn't sleep all that great while we were gone, so I was pretty sleepy when we got back home. Cora kept waking up, then Emma would hear her and wake up. I was up and down, and as soon as I got to sleep good, one of them would wake up. One time I woke up in one of those confused states...I was actually holding Cora, but I was looking for another child. I knew Emma was in her bed, and I knew Cora was in mine, and I knew my big kids were upstairs, but my mind kept telling me there was someone missing...a little toddler girl...I suppose maybe the girl I miss every day and yearn to see running around and playing with her brother and sister and holding her new sister. I hate it when my mind plays tricks on me.


Isn't she a cutie pie?

Friday, September 4, 2009

Need Some Inspiration?

(Warning: it's Kelvin)

Do you ever need to be inspired? I do. We all do. Do you ever find yourself depressed because that thing you were so excited about a month ago is now a fading fling? I do. We all do.

Below is a video of Emma as she was loosing her ability to walk. You may remember it from October 2008. I can't watch it very often, but I don't need to; it is an image forever burned in my memory. I think of her video often. That she can't walk doesn't matter. That she tried so hard does. She inspires me.


video

Be sure to leave nothing on the field. We get one trip around this big ball, and regret tastes horrible. I'll close with my version of a saying I have shared with some of you in another context...



Life is not a journey to the grave with the intention of arriving

safely in a pretty and well preserved body.

But rather, to come skidding in broadside in a spray of gravel,

totally worn out, thoroughly used up

and ignoring the grit in your teeth as you loudly proclaim,

"WOW, What a Ride!!!"

Ride Hard.

Inspire.

Wednesday, September 2, 2009

Nothing much

Not much is happening around here other than the daily grind. I must say, the daily grind is more than enough for me! Carleigh started gymnastics and loves it. Luke started soccer...watch out Pele! Emma's in the groove of seeing therapists and her teacher again. Cora is continuing to grow like a weed! Her little legs are getting chunkier by the day! Kelvin and I are trying to figure out how to be good parents to all of our sweet little ones. They are all so different. It's a challenge to figure out how to best love each one.

Change is not always so grand. (I'm on to a new topic now.) Sometimes it's really great...like our new church building opening in another week! Other times it's not so great...like Emma's continual decline. It's just so hard watching her get worse and wishing she was thriving like the others. My heart aches as it yearns for the missing squeals and pitter patters and laughs from my sweet Em. Just as her muscles and brain have atrophied (a wasting away of the body or of an organ or part, as from defective nutrition or nerve damage), so has my heart. So, we go on each day, trying to love and enjoy life, learning to deal with the ache in our heart...a change that is not so grand.
Another change has been getting back into the groove of school and schedules. We had fun this summer with my sweet former student, Rachel. She helped me out with the kiddos. She's back at school now too. We miss you, Rachel!






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