Less Than 24 Hours to Guess

Contest will end Tuesday @ Noon

Last week when we went to see the pulminologist he told us about a machine called The Vest. He thinks it will help Miles. It's supposed to "shake the snot" out of his chest. It was over nighted to us this week and today a woman drove from San Angelo to teach me how to use it. He has to use it 20 minutes in the morning and 20 minutes at night. He uses it while he's getting his breathing treatments. The lady told me that periodically I would get a call from the company so I can tell them the read out on how many hours the machine has been used. They use the information to prove to the insurance company that it's being used. I had an idea on how much the machine costs, but it turns out that I was wrong. While the lady was here I asked her how much it was and the total was, well, it was a few dollars. Let's play a game. You can each guess how much this machine was and the closest guess without going over (because I'm a fan of the Price is Right) wins a prize! I have a good prize in mind so make it a good guess.

Cherith cannot participate in the contest because she already knows how much it costs. She will be the accountability judge. I tried to load a video for you to see it working, but it never would finish loading.

You can only guess one time, but for every person that guesses, a new item will be added to the prize box.
Anyway, good luck.

Should I go there?

Yes, I think I will.

2008 Sucked.

If you ask Randy he will tell you that, "2008 sucked ass." Whatever that means

Holli

Holli, Brandon and the kids were in town yesterday. We went to their hotel so the kids could swim and so we could hangout. It was so much fun. We brought them Starbucks they hooked us up with complimentary margaritas later. Before we let the kids swim we tortured them with a photo shoot. We always try to get pictures of the kids together. I miss Holli so much. We talk on the phone and stuff but it's just not the same. Yesterday we were like Peas and Carrots again.




As you can see...Miles agrees that Holli is wonderful.

Things to Do

I always have a To Do List going.

It helps me get a lot done.

You can imagine how excited I was when Jocie came in and very matter of factly said, "Melody and I just made our List To Do for today. Do you want to hear it?" I told her that I did.

Here's her list with her spelling:
Play Home
Snugle
Fuse Ball
Santa Play for Mom
Beat Up Boys

That's her list of things to do for the day. How funny is that? I think she's done everything but the Santa play she was going to put on for me. I'll have to ask her about that. Oh, and I don't think they were able to beat up the boys.

Melody had her own list. Here it is:

1. Ok
2. Food.
3. Pl Home
4. Snugle
5. Fuse Boll
6. Santa Play.
7. Beat up the Boxs
8. Haf ut Mid A
(We asked...and that meant Have a Christmas.)

The appointment

Well, I drove 5 hours yesterday for an appointment that lasted 3 hours long. X rays were taken, blood was drawn, finger was pricked, a respiratory therapist was consulted, hand outs were given, equipment was demonstrated, paperwork signed and yet, I left without HOPE.

Yesterday I took Miles to the long awaited appointment to see a Pulminologist (lung doctor) and nothing amazing happened.

The doctor was impressed with how terrible Miles sounded on a "good" day. He didn't have any new ideas. He told me I was doing everything great and that I was doing a whole lot for him. He told me that Miles sounds terrible. He told me that Miles has had some damage to his lungs this year from all the sickness. He told me that he's not sure that constant antibiotics and steroids are really going to do much good for Miles. He told me (not the first time I've heard this) that eventually this is what will kill Miles.

He wanted to know or for us to figure out how far we are prepared to go to make sure Miles can breathe. He said that making Miles live a long long time is possible, but how much do we want to ask Miles to "endure" so he can be alive?

Although he did say all these things, he said it in a very upbeat way. He was very encouraging. He called Miles charming. He acknowledged that Miles knows his family and that he's happy and healthy looking.

He talked to us about how these constant pneumonia's will either eventually make the lungs weak and he will die or Miles will have a really bad shock to the lungs and he will die. He didn't think this would be any time soon. (I guess that's just something lovely we can lay in bed and think about at night.)

Oh, and I forgot to mention that he talked to us about why we don't want a tracheotomy because there would be constant goo coming from his tubing and no one would want to hug him and then he could die if left alone.

There was no advice on how to make things better.

No hope medically to make his lungs better.

Only impending doom.

My heart is heavy today.

I'm taking Miles to Ft. Worth today so he can see a lung specialist. We've never seen this doctor before. Miles is sounding better than he did last week so I don't really think he'll be admitted to the hospital this week. That's great. Please pray that this doctor, Dr. Pfaff will have wisdom about what will help Miles to have healthy lungs. I want Miles to be pneumonia free for all of 2009. I'll let you know how the appointment goes.

Mr. Christmas!

Aw, memories...

Next Month we will have been going to Trinity/Kingdom Life Fellowship for 9 years. When we started there we only had Joey who was 1 year old and I was pregnant with Spencer.
Pete Cauthen had invited Randy several times to his life group on Saturday nights. At the time Randy was working at the paint store. We had tried several……, and I mean several churches and had not found the place we were supposed to be at.
Pete said his wife was making tacos so we said yes.
We went there one time and it felt like home. Brandon Honeycutt was there and joked around with us, played the guitar and he never made mention that he was the pastor of the church. The next day we went to the church and Brandon was in a suit and preaching. We knew that day that this was the church for us.
During that time Randy and I have been a part of several different leadership roles. Here’s the fun list:
• We helped with the youth.
• We were Junior High leaders.
• We’ve done fundraising for camp.
• Camp helpers. (During the camp in New Mexico Spencer was going to turn one year old and I couldn’t bare the thought of missing his birthday so I talked Bryan into letting me bring Spencer. This was one of the worst ideas I’ve ever had. We had to haul Spencer all over that camp because he didn’t walk yet. Also, he had to sleep in the girl’s dorm with me which was really hard for him since there were 6 other teenage girls in the room. He was exhausted from all the teenage chatting, the horrible diarrhea and diaper rash. I was totally tired from taking care of him in a strange place, the late night talks and I didn’t know it at the time, but I was pregnant with Jocie. The next week when I found out I thought, “That explains some things!” But, the great thing about that camp was that it was the first time I ever heard Cherith sing. It was worth all the work.)
• Hey, speaking of working with the youth…, when we were doing that we had two kids (and I was pregnant). Bryan did not understand why we couldn’t do every single thing with the youth. He was totally single and worked at the church. Sometimes he would get frustrated with us and I always thought to myself, “One day when you have a wife and kids you’re going to come and apologize to me for not understanding how hard it is to juggle it all.” That day did not come. So, Bryan, if you read this you can let me know you understand now. If it’s not hard at all for you to juggle all of it then you have my permission to call me lazy.
• Back to the list. I’ve taught at Women of Worth a couple of times.
• We’ve both helped in Children’s Church.
• I’ve taught the 3 year olds and that was fun.
• We’ve both been on the BFW leader teams and given talks.
• For a very limited and primitive time I made the welcome letters for when you came into church. I hope no one remembers this or how elementary they were.
• I’ve sang a couple of times on the worship team. You know in school sports there’s an “A” team and a “B” team. I’m more like the “C” team. That’s fine with me.
• Brandon had me arrange a big event one time that put me so far out of my comfort zone! I was in charge of all the “media” for that Wild Bill show that we had one time. I think that’s what it was called. I don’t know, I blocked out a lot of that. I had to talk to people all over our community and I did not like that one bit. I had to take flyers to daycares and other churches. It was an awesome show and the kids loved it, but I felt so unconfident about my skills as a coordinator.
• I’ve changed my share of diapers in the nursery. I was on the schedule a long time until I cried to Kelly one time because it was too hard for me to be in there with Miles and all the other kids his age that were doing a million other things he wasn’t doing. I’ve never been asked to do nursery again. So, if you don’t like helping with the nursery you know what you can do about it now.
• I was on the Prayer Team for awhile.
• We graduated Kingdome Advance and have a Bachelor’s degree in Practical Ministry. Okay, wait a minute. How did Brandon talk us into doing this? We had four kids and I became pregnant during that time with Miles. For a year and a half we spent two nights a week at Fountaingate Fellwoship from 6:30 to 9:30, had life group, Randy ran his own business, had life group at our house, spent several Saturdays there for intensives and we went on a 10 day mission trip to the Czech Republic. I wouldn’t trade one minute of it. The process changed me forever.
• Had a writing gig for the newsletter. My own column mind you.
• Then we’ve been Life Group leaders for 7 years. That totally amazes me! We’ve had it at 4 different venues. We led it at Candy and David’s house, our new &and old house and we rented a place for 2 years. We’ve had tiny groups, enormous groups, teaching nights and goof off nights, taught the kids and let the kids run free, worship all night and no worship at all. Also during that time we’ve had 2 more kids. I can honestly say that life group is one of my most favorite things in the world. I love being with people in my home who share life together and love the Lord. I guess that makes sense since we came to this church because of life group.

Tacos changed our lives.
Just kidding. It was Jesus.

My Heart's Desire

For those that have never seen the painting that Gail did for our family...Here it is.

It's so beautiful. I love it more than I can explian here. It's the first thing you see when you go down the hall. When I see it I ask God to make it happen. There's nothing I want more. Nothing.

Life Group Christmas Party

Last night was our Life Group Christmas party! We are Hardcore as you can plainly see.

This was just a joke. Jennifer drew Amanda's name for the gift exchange and she played a joke on her. It looks like she's chugging a half a bottle of questionable liquid, but the truth is that it was tea. Amanda was mortified. Tony was proud. Randy was jealous.


Anoe drew Miles' name for the gift exchange so here she is opening his gift for him. The kids were all so sweet when they gathered around Miles so he could get his present.

This is currently my new favorite photo. He loves the bear Anoe gave him. Isn't this the sweetest picture? He's in bed sleeping with his teddy right now.

Someone gave Jennifer the Best Present EVER! I guess you'll have to ask her who gave it to her...no, I'll tell you. It was me! I drew her name and I totally got her THE OFFICE dvd board game. OMG! I wanted to keep that thing for myself! (That's what she said.) I'm glad I gave it to her though. She loved it.

Cookie decorating was a hit.


The Hot Chocolate was too HOT.


Still, it was an awesome Christmas party. We had lots of fun. I love this group of people so much! It's a pleasure to have them in my home every week. I love each one of them dearly.

More Pictures of the Fun.

I’d like to thank the Academy.

We did it!

We won back to back table decorating contests!

Rachel and I are the Dynamic Duo.

I promise we don't really have red eyes.

First of all I’d like to thank the judges for voting for us and not throwing us out for our oddball table.
Also, I’d like to thank my Mom…for not winning. (Although I was secretly voting for her in my own head.)
Then I’d like to thank the people sitting at our table for making it look better than it actually did…You know who you are.
Of course I can’t leave out Jennifer for making our table “authentic.” I’m so glad I have a Mexican friend. Oh, I mean Hispanic.
I’d like to thank the cactus for not being prickly.
And, I’m sorry to those of you that should have won but didn’t because I needed something to be giddy about.

Most of all I’d like to thank Rachel for being my most creative friend. It’s so fun when you and I have an idea and it just takes off in a matter of seconds. It’s so fun to collaborate on all those lovely details! I love how we both do our share and get a project done. I’ve already got an idea for next year, but I obviously can’t share it here. We’ll meet in the sound proof bat cave soon and discuss our ThreePeat.

*Side Bar* Every time I type Rachel. No, I mean every time…I always type RANCHEL. I think it’s because I’m used to typing Randy.

*Side Bar #2* On the same day I also happened to win a book on the 5 minutes for parenting special needs kids blog. I really wanted that book and almost bought it for myself last week, but decided to wait to see if I would win. I did!


Anyway, Feliz Navidad!

Lamenting about Miles.

Miles is so sick.

He stays sick.

He's been on antibiotics since July. He hasn't been off of them. He's been on steroids, breathing treatments and antibiotics. He's been in and out of the hospital since January.

I didn't go to church yesterday because I knew he would choke and cough and gag during the whole service.

Today I went to buy him more stuff to try, in hopes of staying out of the hospital this Christmas. Right now it doesn't look good.

On the 22nd I'm taking him to Ft. Worth to see a Pulmiologist. He will see if there's anything we can do to make his lungs heal from this on going pneumonia. If I were to take Miles to see him today with his lungs sounding the way they do I'm just about positive that he would admit him in the hospital. How is he going to sound better by the 22nd? That's only three days away from Christmas and I will be stuck in Ft. Worth without my family if he gets admitted. I know that's a couple of weeks away, but it's not getting better. It's only getting worse. Every month it's getting worse.

The other day I suctioned that kid for 2 and a half hours and you wouldn't believe that amount of mucus he had. I don't know where he can keep that much stuff in his little body. He's sleeping almost all day long. He won't eat. He's being fed almost exclusively by the g-button. You can hear him breathing in the other room.

It's sad. I feel terrible for him. I can't imagine feeling as bad as he has for as long as he has.

He needs freedom.

He needs a miracle.

My sweet kids!

Tonight Randy had to work late again. He’s been working very very late hours. Tonight I asked Randy if it would be okay if I took the kid’s out to dinner. I had his blessing. I just didn’t want to sit at home with them again.

I decided it would be nice to go to Johnny Carino’s for a change. On the way there I was telling the kids that I wanted to have a really nice time with them. I also said something about how I thought it was possible that I was the first person ever to take five kids into that restaurant without another adult. After that Spencer said the sweetest thing to me. He said, “Mommy, you are really pretty so I’m sure at least one person is going to ask if you’re single.”

What a sweetheart! I smiled and laughed so hard. I don’t know what made him think of that, but it sure did bless me. Can you imagine a single man coming up to a woman eating alone with five children and asking if she’s single?

On top of that wonderful compliment…dinner was great, and Joey told me thank you for bringing them there, all the kids ate their food and were very polite and Spencer told me that it was a treat that I took him there.

I will let you borrow my kids to go to restaurants with you. It’s a pleasurable thing.

Amanda

I was looking through some stuff that my sister in law Sharon wrote. She died in September 2007. She had a daughter named Amanda that was like Miles. So many times I wish Sharon was here to help me with Miles or at least understand how I feel. Amanda lived to be 18. Sharon took great care of her. She prayed for her so many times. At one time Amanda was having 20-something seizures a day. They were terrible seizures. Sharon decided to fast and pray for a week for the seizures to go away. Christmas Eve was the last day of the fast and she said that she had an actual encounter with God. She said that she was asleep and she woke up to a light in her room that was so bright that it was almost blinding. I honestly don't remember much of the story because I thought she was a freak when she was telling me...I didn't know much about God then, But I do remember that Amanda had the worst seizure of her life that night and Sharon thought she was going to die. Then, the next morning she never had a seizure again. Today I miss Sharon terribly.

In a stack of her writings I found a poem that she wrote about her daughter Amanda. It's in her own handwriting on the back of her menu planning and shopping list. I think she captured Miles as well as Amanda. I couldn't have written it better myself. As I read it, it seemed like my own thoughts and feelings about my son.



Amanda

So soft her face, her smile sweetly pure
Not even a trace of all she’s endured
Could it be that she knows a secret, perhaps
Is it happiness within that makes her laugh?

To love her is a joy not many know
To be blessed with the gift of watching her grow
Each day more beautiful then before
Looking forward to what the future holds in store

The things she teaches are lessons of old
That a smile is worth far more than diamonds or gold.
That happiness can only be found within.

The joy of God shows on her face
And though she can’t walk, she’s won the race
For the Lord is her Shepard, He won’t let her down
Through the blood of her Savior, she’s Heaven Bound.