Monday, November 30, 2009

Gobble Gobble

(author warning: kelvin)

Hey folks, we just got back into town from deer hunting. We were there since Thanksgiving. I'm just throwing out a quickie-post and then Christy can put up a real one tomorrow. She is enjoying some time with her girlfriends tonight.

I can offer these updates on Emma. She had a decent weekend and mostly slept (good). Every morning around 0200 she would be in a lot of pain (bad). I got to hold her several hours each night while we slept or when she was crying. I love holding her when we sleep. I curl her up in between my arm and chest and place my lips on her cheek and hum to her. We did that from 2-4 this morning. I loved it. I am privelidged to hold her; she is so awesome.

Christy said yesterday that she can't imagine Emma loosing any more weight. She will be 4 years old in March and is down to about 20 pounds (hint: don't try to picture it). We've learned enough about Batten Disease that we can wish against something, but we won't bet against it.

Oh yea, Happy Thanksgiving, gobble gobble and all that stuff. But really, we appreciate all you blog readers and friends who support us in so many ways.

Tuesday, November 24, 2009

Thankful (updated Wednesday evening)

Update:
Mom got to come home from the hospital this morning. The doctor said the questionable stuff on the MRI was nothing more than results from aging. (whew) Not exactly something every woman wants to hear, but hey, we'll take it. I talked to Dad this afternoon and she was resting after having made the dressing. They were making the pecan pie later today. Kelvin will be happy to hear that! Sounds like it's going to be a great Thanksgiving after all. The only thing that would make it better, of course, would be seeing Emma chomping down on a turkey leg and digging in to the pecan pie Grammy made...

This Thanksgiving I'm thankful that my mom can still walk after this...



She was in a terrible car wreck yesterday. I think she's going to be okay. They are still awaiting results from an MRI. I hope she gets to join us for Thanksgiving dinner.

Sunday, November 22, 2009

Dear God...

(author warning: kelvin)

"Dear God..."

Wow, all the things we put after those words... thanks... praise... forgiveness... healing... friends names... blessings...

It is hard to imagine a word or phrase that hasn't gone behind "Dear God..." I suppose every once in awhile a new one comes along though, at least in our individual lives. Example:

"Dear God, please let this be my childs last Christmas".

Yep, I didn't see it coming either.

And then there's the stocking. Christy asked what we will do with Emma's Christmas stocking. Hey, I'm good on everything else...funeral arrangements, old clothes, pictures, you name it, but her stocking? I haven't a clue.

Friday, November 20, 2009

I read it...in a book!

(author warning: kelvin)

We were excited to read the following quote about Batten's on a children's hospital website:

The condition is not a painful one and
the child will not be aware of what
is happening.


Uh, maybe Emma was misdiagnosed.

Tuesday, November 17, 2009

Baby's firsts and Emma

Did I mention Cora cut her first tooth last Friday? I. can. not. believe it!! She is also crawling, well, kind of crawling, all over the place, laughing, riding the little scooter car around the house with the big kids and eating more and more.



I just wish she would get the hang of sleeping through the night. Wouldn't that be nice?

On the flip side of that coin, Emma is sleeping more and more during the day, and most of the night. When she is awake she has been crying more, and I'm not sure why. Her seizures have increased and her medicine isn't coming close to cutting it. She still seems to react well to the Morphine, but I have had to start giving it to her more when she's awake. What drives me crazy is reading articles where doctors say there is no pain associated with Batten Disease. WHATEVER! Why wouldn't there be? I mean, if the muscles in your entire body were atrophied, it would hurt, don't you think? If your brain was wasting away, it seems to me like that might hurt too. If your stomach muscles were too weak to keep your bowels moving, don't you think you might have a pretty substantial stomach ache? If your body was in a constant state of stiffness much like having a charley horse and shook all the time, seems reasonable to me to think that would be uncomfortable. I just wish I could do something to make it all better. Unfortunately, Mommy's kisses are not doing the trick this time.

Sunday, November 15, 2009

"Fish On!"

(Author warning: Kelvin)

So, the fall fishing pattern is in full swing in Trinity Bay. A good friend and I went Friday and caught numerous speckled trout. I took Carleigh and Luke on Saturday, and while we didn't find the specks, they did catch a lot of sand trout. Luke even caught a 21" redfish! I was extremely proud of both kiddos. We weren't using bait, instead they were casting lures to the schools of fish under working gulls. For you non-fishermen, they weren't just casting a piece of bait and watching a bobber. They were casting Norton Sand Eels and working them most proficiently. They probably caught 10 fish apiece.



When Luke caught his big redfish it was exciting. His little Zebco 33 was whistling as the fish stripped line out. Luke had to work the fish around the boat motor as he ran around back and he fought it 100% by himself. All I did was coach him on keeping his rod tip up and to keep reeling and took the honor of netting the fish. There was another boat fishing this same group of birds, so I initially was reserved in my celebration so as to not interrupt their fishing, but once I heard them hollering congratulations we all fell into a full blown screaming and high-five session! I'm sure that a five year-old casting lures under birds had already caught their attention, and to witness his several minute solo fight against such a solid fish was inspiring for them as well. They offered more congratulations before they left.


And actually, this was not Luke's biggest catch of the day. Shortly after catching his redfish he landed one that weighed 195 pounds! Yep, on his back cast he sunk his lure into my ear. The presence of two small children saved the bay from hearing a barrage of curse words. For a couple of minutes I looked like one of those 20-somethings with a big earring in the top of my ear, only it was a pearl colored Bass Assassin and a 2-0 hook! A little work with the pliers and it came right out (sure could have used a mirror). Have a good one..and tight lines to you...

Wednesday, November 11, 2009

The Wall

If you've ever run/walked in a marathon you know what "the wall" is. Mile 20 of 26.2. You're warned not to try to compute the distance you have remaining because your body is so tired at this point, it is too hard to do simple math. Kelvin and I walked the Rock n Roll marathon in San Diego in 2001. I had trained to walk and he had trained to run but injured himself before marathon time, so he walked with me. We were warned about "the wall." Our coaches told us we would be spent by the time we got to that point and we would want to stop, but to just keep in mind the goal and keep going. They reminded us we wouldn't be able to do simple calculations or carry on a decent conversation because our mind would be so fuzzy.

It's not a marathon we're running or walking now, but I have hit the wall nonetheless. I am at my max. My body is totally worn out and my mind is beyond fuzzy. I can't do simple math or remember from minute to minute what I was talking about. My head knows I need to keep going...keep in mind the goal. But what is my goal? I wish there was something wonderful to look forward to after this fuzzy headedness, but unfortunately, there is not. I guess that is not entirely true, because for Emma there will be something wonderful. For us, it is not wonderful now, and it won't be wonderful when her battle with this devestating disease has finished ravishing her little body. I wish I could just scream until there was no voice left in me. I want her to be well. My heart is in a constant state of ache. I yearn for her laugh, her hearty appetite, her spunk. I pray and beg for a miracle healing. I know God can just think the word and she would be well. She wouldn't even have to go through physical therapy to recover the massive muscle loss her body has endured, her head wouldn't hurt from all the brain waste going away and the new cells taking their place making her head its normal size, her tummy and intestines wouldn't have any trouble adjusting from lack of functioning, she wouldn't have to squint when her eyes opened and light hit them with sights and beautiful colors she hasn't seen in over a year, and she would have no trouble getting in on the chasing games Carleigh and Luke play. She would love making Cora laugh and holding her baby sister. She would be so cute in her sweet little pilgrim or Indian outfit for Thanksgiving. At Christmas it would be so much fun to watch her crawl up in Santa's lap and hear her give him her Christmas wishes. Every once in a while she gives us an audible sound other than a cry. Her voice is so precious. Cora is starting to babble now, and I look forward to the day she is saying "mama." I yearned to hear that word from Emma.

Here are some pictures of happier days...





Tuesday, November 10, 2009

We miss you Lori

Lori, or Aunt Lori as the big kids call her (even though they never got to meet her), is Kelvin's sister, my sister-in-law. Today marked 10 years since she was taken from us. Sadly, she was murdered by her ex-husband. Today Kelvin and his mom and I had lunch with the DA who prosecuted the good-for-nothing s@b who killed her. The stories he could tell! I am just glad he has one to tell about putting our loved one's killer behind bars. I wish he could've gotten more than just prison for him, but our country's wonderful relationship with Mexico through the NAFTA agreement put a stop to that.

Since this is my blog, I think I'll take the liberty to preach a little bit. If you know someone whom you think may be in an abusive situation, don't sit by and do nothing. It may be hard, but step up to the plate and do something. If you ever hear of someone receiving adjudicated sentencing, speak out against it. Lori's killer was supposed to have started serving jail time the weekend after he killed her. Instead he killed her, dumped her body, and fled to Mexico to live the good life! There is something wrong, way wrong, with that!

Lori was a beautiful young lady. She loved her family and friends, and always begged Kelvin and me to make her an aunt. I wish so badly our kiddos could have known their Aunt Lori. She would have made such a great aunt, and she would have been totally thrilled to have been an aunt so many times over! She would have been so proud of her kids. They have grown to be such beautiful young people. I wish we had more memories with her...more hiking trips, camp outs, vacations together, water skiing, and the like. I wish I could go take her water aerobics class at thr Y again or visit one of the stores for which she was a vendor. We can only hold tight to the memories we do have, and dream of a day we will meet again.


Though small of frame
And so light on her feet
She left deep prints in the hearts
Of all she would ever meet.

Lori Leigh Dunnam
6-28-75 - 11-10-99

by Uncle Gene

Thursday, November 5, 2009

Fall Fun

Lovin this weather we've been having. It's been cool at night and beautiful during the day. We had a wonderful time last weekend. Here are some shots for your viewing pleasure...











Sunday, November 1, 2009

Cuddles

The other day we had a visitor. Emma's nurse called to ask if she could bring one of her friends, Cuddles the Clown with her. How precious! Cuddles has the most wonderful ministry of trying to bring smiles to the faces of those who might not have very many smiles readily available. She has all kind of cool tricks in her bag, really great animal balloons, and a fantastic "panjo..."



We all had such a good time with Cuddles. Luke was a little bit shy. I know it's hard to believe, but he takes a while to warm up to new folks. He really started liking having Cuddles around about the time it was time for her to go. We hope she can come back again.




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