Sunday, June 28, 2009

Sophia and Eli meet the Incredible Hannah

Sophia was so excited to meet her new friend Hannah that she met her in the driveway upon arrival. Hannah came out of the van wearing her running legs (blades) having some balancing issues. We all walked inside and Sophia immediately started telling Hannah about her play room upstairs. Hannah was itching to get those pesky legs off and run up the stairs. Her mom helped her remove her legs and she zipped up the staircase like it was nothing. I cried.

Hannah is the girl I've mentioned before. She had to have both legs amputated at the knee when she was only 9 months old. She too was born with legs that wouldn't work. She has adapted like a pro. She is a happy, active and smart kid.

Hannah and her mom came for a visit on Saturday. Kim, Hannah's mom, brought all of Hannah's legs...about 5 pair. She kindly showed us how they worked and Hannah demonstrated her ability to use the two she currently fits. She's not mastered it. She is 5. She'd much rather enjoy life on her "stumps," but she is learning all the time how to use her prosthetics. It's literally like walking on stilts.

Sophia and Hannah had David make them a tent. Eli is enjoying it very much in the pic above.

Kim admits to us that the first pairs of legs are very difficult to manage as they fit on the child differently than a set for an older child. Seeing Hannah able to go where she wants with such ease was a real encouragement to us.

David's back is in bad, bad shape. His leg's feeling hasn't returned since the Sunday the slipped disc reared it's ugly head. David's first shot gave him limited relief. He will receive another shot tomorrow. David is likely facing back surgery. He has been in constant pain. No good.

I hope you are enjoying the summer. The heat in Oklahoma came early. The tomato plants are not performing...likely from heat stroke. I guess I have to cut them a break.

With love and gratitude,

Wednesday, June 24, 2009

The Annoying Eli

David and Elijah made a Shreveport trip Monday and Tuesday to have Eli's cast removed and his arm x-rayed to make sure the break is healed. It is. We were told to be careful and keep the soft splint on as much as possible as the break is likely not 100% like new just yet. Eli is relieved to have the cast off. He has found the pure joy of playing in you can see in the Elk River pics and post. For a while, we won't have to wrap an arm for him to enjoy some H2O. We'll all like that.

Clearly, you have noticed I discovered You'll see the occasional slide show from me as a result. In fact, I'll be posting the events of June 21 soon--Sophia's 7th birthday.

I always shy away from using the "EST" words in my Eli vocabulary because there are just so many things that qualify as the "EST." But if I were going to use "EST" words, I would say that one of the hardEST things I have to do is see children who are Elijah's age (or younger and bigger). I want healthy babies for all. I in no way wish that a child had an extraordinary challenge, but seeing plain kids makes me realize how small Eli is. How he should be able to do so much more than his body allows. It makes me so sad for my sweet boy. But, I know he has motivation. He wants to walk! And he will, just years later than we'd all like.

I took Sophia to the Jonas Brothers concert here in Tulsa on Monday. It was great. She loved it. During the show, one of the Brothers did a plug for juvenile diabetes funding as he has diabetes. Sophia leaned over to me and said, "Eli has diabetes doesn't he?" I said, "no, Eli doesn't have diabetes."

David and I never set Sophia down and explained how her baby boy is different. I think eventually I should discuss it with her. I'll likely let her be the guide on when is the right time. Before Elijah's birth, I was the ultimate planner. Since, I've chilled a bit. Life is unpredictable, but God calls the shots and I have no control.

Sophia LOVES Eli so much. She is his magnet. He goes right to where she is and wants to touch her. She told me yesterday it was getting annoying. I just laughed with delight because I think baby brothers should annoy their big sisters. Keep it up, Eli!

I love you all,

Thursday, June 18, 2009

Help Eli win a playset

So, this is a shameless plea for Eli's fun. Rainbow, a premiere maker of backyard play sets, is having a drawing where they are giving away a play set every week. I want Eli to win one! So, here's my plea: sign up for the drawing and then gift the play set to Eli.

Since having my extraordinary son, the concept of "odds" and "rare" are very different to me. I believe Eli will win one of these sets. If I could plead his case with Rainbow, I'm sure he would win, but since we have to play the drawing game, he needs as many people to enter on his behalf as are willing. So, follow this link and enter, then when you win, gift the prize to your favorite extraordinary kid: Eli!

Just a reminder: Eli LOVES being outside. It is his absolute favorite place to be. He enjoys Sophia's play set, but it is small...big enough for Eli, but not big enough for his caregivers. Plus, I want Eli to have many options for fun on the play set, which he will get with one of these sets.

I love you all!

Monday, June 15, 2009

Elk River... BE-AWESOME

Having fun is a lot of work.

I just spent three days at Elk River outside Noel, Missouri, and it was a blast. We met about 30 of Melissa's family members at a campsite just a few yards from the river bank, and there was nothing to do but float down the river, walk up the river, float down again, then eat a criminally large and delicious meal. This happened nine times. I am in four different kinds of debilitating pain. (Sunburn, indigestion, muscle, computer detox.)

Brother-in-law David brought me and Elijah back so that Mr. Big Little can return to school in the morning, but I think Eli would rather have stayed. We sealed his feeding button and his cast, set him down in six inches of river water and listened to him squeal, laugh and babble for hours at a time. He absolutely loved it.

Hope your summer is well underway.

Tuesday, June 9, 2009

Peace On Earth, Good Will Toward Eli

It's been a very good day, all things considered. My back was really in bad shape this past weekend, but I got the Cortizone shot (they held back on the Heiniken chaser) and the pain is completely gone... for now. (Insert "Jaws" theme.) So of course, I got some chores done around the house, and that always gives me a giddy sense of accomplishment, because I'm a raging egoist and desperately need the strokes. Most husbands know instinctively that they're supposed to fold laundry, then they never do it because society says they don't have to, but if they DO, then they're heralded as conquering heroes. I mean, it's just laundry. But yeah, I folded it, and I'm awesome. There's just no way around it.

I also found the odd-shaped vent filter I needed for that pesky fifth furnace vent, and seriously, it's little things like that which make me smile. More importantly, Elijah is a raging ball of fun these days. He speaks more, he listens more, he demands more, he lifts a wider variety of stuff with his fantastic hands, and he scoots on his bottom from one end of the house to the other. Tonight he laid his little Elijah head down in the bed, and instead of watching Thomas the Tank Engine (his new favorite!), he promptly passed out. That's a great sign that he's been worn out properly from playing all day long.

We met with his new endocrinologist, and we like this guy very much. He's a real expert, and I think he's going to help us make some headway with increasing Elijah's growth WITHOUT resorting to hormone injections. It all has to do with Elijah's own personal growth history and the fact that he's shown some real success, despite still being so small. I took him to Wal-Mart today, and three, count 'em, three small children pointed at him and exclaimed, "Baby!" It's moments like those that remind me--because yeah, I forget--that people still see him as an infant. But I've always called him my "toddler who doesn't toddle," even though that's no longer accurate, either. He's a champion toddler!

Sophia and I went to play Putt-Putt tonight while the nurse continued feeding and wearing down the boy. She's having a great summer, and I aim to keep it that way. Melissa returned from D.C., and every creature in the house is done stirring, except for this typin' little mouse. So here we are, all snug in our beds (or about to be), and the Red Sox shut out the Yankees for their first 6-0 season opening record against New York since 1912. If we can sweep them at Fenway, and WE CAN, we'll be two games up in the division. Like I said, it's the little things that make us smile.

Pray for Elijah's left arm, which is still in a cast nearly three weeks after having the broken bone reset. We're perfectly fine with the cast staying on so long, but Elijah's ready to have his arm back so he can play harder. Also, pray that we make some progress with Speech-Pathology, especially in light of a major clinic visit this Friday to look at his entire communication process, starting with the structure of his ears and throat.

YAWN. Talk to you again soon.

Wednesday, June 3, 2009

Back Ack!

David has third level disc degenerative disease including a slipped disc! Ack! Basically that means that the three discs from the bottom are deteriorating and the second one up has slipped out causing pain and numbness down David's leg and in his foot.

He's had on and off back problems for a few years and this week the pain became nearly unbearable. He'll have a steroid shot in a few days and then must rest.

Elijah, on the other hand, is doing great. He laughs and plays and enjoys his toys. He discovered Elmo (he sings the La, la, la... La, la, la... Elmo's World along with the video) and Thomas the Train.

I know David will appreciate your prayers on his back recovery. Have you seen what he has to lug around for Eli? It's a lot. Not to mention his trips to the library with his backpack of returns and new check outs. Oh dear, he's going to have to figure something else out.

Sophia is enjoying SUMMER!

Love you all,