Wednesday, December 31, 2008

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

Monday, December 29, 2008


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.

Wednesday, December 24, 2008

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
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.)

Tuesday, December 23, 2008

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.

Monday, December 22, 2008

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.

Thursday, December 18, 2008

Monday, December 15, 2008

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.

Sunday, December 14, 2008

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.

Thursday, December 11, 2008

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, 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.

Tuesday, December 09, 2008

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!

Monday, December 08, 2008

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.

Monday, December 01, 2008

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.


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.


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.

Saturday, November 29, 2008

Thank You.

4 years ago today Miles died in his sleep.

God raised him from the dead.

I'm so thankful he's alive.

My life would not be complete without him. I would be missing something. He was meant to be a part of our family. We were meant to have five children.

I can't seem to hug him enough today.

I also can't seem to get this ache out of my heart.

This is not what I would have chosen, but it has it's joys.

When he's healed I will miss who he is today.

Friday, November 28, 2008

My amazing daughter.

I wish I could transfer to you what I just saw.

I got to sleep in today since the kids are home from school. When I woke up I remembered that I needed to turn off Miles’ feeding pump before it started to beep. At night he has continuous feeds, but if the milk runs out then it has a terrible alarm like a fire detector.

I walked to Miles room and as I got closer to the door I heard loud music. When I walked in I saw Jocie bowed down and crying. She had put on her beautiful new Christmas dress that her grandma gave her. It’s red and white and has a petti coat underneath it. Her hair had been French braided the night before, but she had pulled it out so her beautiful long blonde hair had ringlets all over. Jocie had put on some worship music in Miles room and she was weeping. When I first saw her she was one of the most beautiful things I’ve ever seen in my life.

I asked her what was wrong and she said that she had been worshipping and praying for Miles to not have brain damage. She said she was also praying for many other things for Miles. Her face was blotchy from crying. Her heart was so tender. Miles was so still and asleep in his bed while his sister poured out her heart to the Lord on his behalf.

I kissed her, told her I was proud of her and left the room so she could continue to talk to her Jesus.

Lord, please brand that image into my heart so I will never forget it. Make it like a beautiful painting in my mind. Let me always remember how humble, genuine and gorgeous Jocie was on this day. And, Lord, please hear your daughter’s request for her brother. Let her child like faith and devotion move you to do an amazing work in Miles.

Sunday, November 23, 2008

He's Still Got It.

Yesterday Randy turned 33 years old.
Today after church he decided to show some boys how to climb a tree.
Luckily I had my camera handy.
Looks like he's still got it!

I think this is the point where he was wondering how in the world to get down.

Wednesday, November 19, 2008


Monday night Joey and I went grocery shopping together. He wanted to spend time with me “all by myself.” He also talked me into stopping at the coffee shop where he did not order a child size.
Picture us standing in the aisle with the popcorn trying to find the popcorn with the most butter but with the least price.

Joey: Do you remember when we were at Holli’s and she wanted to make popcorn and then drizzle melted white chocolate on it?

Me: Oh yeah, that was good.

Joey: Really?

Me: Did you not try it? I liked it.

Joey: It’s just doesn’t sound like a very highly evolved snack to me.

Me: Is that right?

Joey: I have a different pallet then the rest of you. It’s okay.

Monday, November 17, 2008

One of my new favorite things.

Okay, so I've got a collection going.
I'm going GREEN...sort of.
I'm not actually doing it for 'green' reasons. It's more of a consumer thing, but with a good cause.
I buy a lot of groceries and I didn't want 12 bags of the same color so I've been shopping for bags. I have them from Wal-Mart, HEB, Target, Laurence Brothers, United & Albertsons. I guess if you see one at a store that I don't have one would make a cheap gift for me. Although, I think I have more than I need. Mainly, they just make me happy. I enjoy taking in my own bags and seeing all the bright colors in my cart. It's the simple things right?

Saturday, November 15, 2008

Waiting Room Wit

I wrote this in my journal while being in a waiting room yesterday for at least an hour.

I think wine should be served in waiting rooms. There should be a one or two glass limit and children should be able to partake. It would be good for everyone. I wonder who I should bring this up to.

Right now there's a patient here that looks like he's a dwarf. His top half and head is large and his legs are small and maybe crooked. His face is so pale and it looks like he doesn't get enough oxygen. His lips and cheeks are blue and his eyes are bloodshot.

Now I'm in the 2nd holding cell. The receptionist walked us to the room and as she's closing the door she tell us, "The doctor will be right in." Yeah right.

Why don't they say, "I hope you brought your pillow because you might as well get comfortable- you'll be waiting awhile."

I think they tell you that because it saves them on cotton balls, gauze and alcohol preps. People don't get around to searching the cabinets and stealing such items until they realize they've been waiting forever for a doctor who will show up when they're good and ready to do so.

It also saves the doctor time in the long run because all the questions you were going to ask the doctor are long forgotten so all the doctor has to do is check your ears and hand you one of his pre-written prescriptions. If anyone dares to question the good doctor on what the medication is for, the doctor just has to make mention of the extra pounds that you still need to lose and the appointment is over. The patient clams up and the doc heads for the door.

Why does every doctor's office have a set of Busy Beads? How did this get to be the standard office toy? After graduating from med school is each doctor presented with a white coat and their very own Busy Bead set? And, how is it that kids all across the United States fight over this wooden and wire primary colored toy? Kids would never play at their own house with a toy without lights or buttons to push. My kids would have cut the wires off that sort of thing a long time ago and tried to make a video game cord out of it.

Thursday, November 13, 2008

Pam, you said you like the details...

Since Miles doesn't use his feet or hands the dead skin that would normally just wear off of him doesn't. Here's something that I have to do that other people don't. After I give Miles a bath I rub all of the dry skin off of Miles feet and hands. It just balls off. If you look close at the picture you can see the large amounts of skin that comes off. Another thing I do, that isn't shown is that I have to get off the extra eyelashes. Miles doesn't ever rub his eyes of rub his face of his pillow so he has lots of eyelashes that never fall off. Anyway, that's just an off beat detail that I thought you might be interested in.

Pam, now can I beat you at Biggest Brain?

Wednesday, November 12, 2008

Snotty Picture

Does your SNOT hang low?
Does it wobble to and fro?
Can you tie it in a knot?
Can you tie it in a bow?
Can you throw it over your shoulder like a Continental soldier?
Does your SNOT hang low?

Monday, November 10, 2008

Another Book Cover Review

It's library day again so I've got some more audio book-cover reviews for you. I decided that I wouldn't have any credibility with you if I didn't catch you up on the other books so here goes:

I really enjoyed this book. It had quirky humor which I always enjoy. I thought it was going to be too much about hospitality for my interest but it had some great tips and great humor. Randy heard a little of it and he thought it was funny. This book isn't for everyone. Some of her humor is a little out there. Still I recommend this book.

This book was over my head. As I listened I kept thinking that I was going to enjoy it, but I had to admit that I didn't understand what in the world she was talking about. I don't think this book is good at teaching grammar. I think it would be better for someone who has a grasp on grammar but has a questions about the details of grammar. I just couldn't hang. Snob me if you will.

I listened to this last week and I laughed so much. I think Ellen is so funny. I listened to this on the way to Ft. Worth last week and the time just flew by.

I also listened to this last week. I loved it. I know. I know...I don't believe in Santa, but the back of the cover really got me. The man that wrote the book portrays Santa every year and he also has a heart for the disabled. He has a workshop all year long where he repairs wheelchairs and other medical equipment. He tells funny and touching stories about portraying Santa. I can't believe that I cried several times while listening to his stories. It was enjoyable even for an ol' Scrooge like me.

This week I'm listening to a few more. I've been reading biography type books because I'm researching how they go about telling their story. I thought it would help me as I write my book.

I'm excited about this book. It says, 'Thanks for the TIP-Confessions of a Cynical Waiter.' That just sounds funny.

This one is about 'The Art of Domestic Bliss' and reviving Victorian family celebrations of comfort and joy. Since I'm so very domestic I thought it would be a good read/listen.

And lastly, this just looked quirky enough for me to enjoy. It's a memoir of a HAPPY childhood. This I had to hear. I didn't know people wrote books about happy childhoods.

So there you have another Monday of Book Cover Reviews.
Oh, and thank you for your book pictures! If you were as cheap as the library I would get the books from you. That's something you should think about!

Friday, November 07, 2008

Miles will be warm this winter!

I got a great phone call on Tuesday from someone at Hendrick telling me that YES Miles will be getting the Bair Hugger. For those that don't know what that's a piece of medical equipment that he always uses at the hospital to warm his core body temperature. It's used for hypothermia...and for Miles. He uses it here and in Ft. Worth. He's basically the only kid that uses it. Most of the nurses don't even know how to set it up or use it. I usually am the one that gets it all ready for Miles. I've been saying for almost a year now that Miles needs this at home.

His insurance said NO.

It's just such an uncommon thing to have in one's home.

Still, we needed it. We keep him covered with fleece and an electric blanket, but it still doesn't warm him enough. Yesterday his legs were ice cold.

Anyway, as I've told some of you...In September Miles was in the hospital at Hendrick and his doctor agreed with me that Miles needs the Bair Hugger at home. There was a social worker talking to several people to see if we could get this machine. Like I said, insurance said no. Even the medical supply companies said they couldn't even order the machine. It had to be purchased and delivered to a hospital. Several months ago I tried to get a hold of the company myself so I could see if I could just save enough money to buy it. The company wouldn't even talk to me because it's not for individual use. That's so strange considering that Miles actually uses it more than anyone in our whole city. My hands were tied. Anyway, before we left the hospital that time the social worker came and told me YES he was going to get the Bair Hugger. She told me that CMN (child's miracle network) was going to buy it for us. I was so thrilled! We've never personally received anything from CMN so that was exciting. She told me that it would be ordered and delivered in about two weeks. That was going to be awesome because that was when I was going to return from having Miles g-button surgery. That would have been the end of September. It felt like it was all going so perfect.

THEN...I got a message on my phone from the same social worker saying that, "Sorry. We've changed our mind. We're not going to be able to get your son the Bair Hugger." Then she said something silly like, "I don't really know what else you can do, but maybe you can call the pastoral services and someone can help you there. I don't really know their number, but if you call the hospital..." You get the point. The run around.

I think I was so shocked by that message that I didn't know what to do. I wanted to call and say, "What the ______?"

I went a different route.

I told on her.

2 weeks ago I had to take Miles to see the doctor. I told Dr. Wiley what had happened and he was shocked. He left the room abruptly and called the social worker. He ended up leaving her a message and told her, "If you want me to admit Miles in the hospital every time he has a 90 degree temperature then that's just what I'll do." He came back to the room and said that she would be calling him back later. Dr. Wiley is so mild mannered, but he got rilled up. I told him it was good to have him on the team. I didn't hear back from him.

Then...I told on her again.

Miles' physical therapist is on the board of CMN. I told her what happened and she was so mad. She couldn't believe it. She told me that she was sure that Dr. Wiley was handling it, but just in case she would get to the bottom of it. That was on a Thursday.

Then on Tuesday I got a call from the same social worker and she was so pleasant. (She didn't say one thing about the possible ass chewing.) I was glad about that.She told me that she was pleased to tell me that CMN was going to buy it, and as a matter of fact she ordered it the week before and it should be delivered in one more week!


I got a letter in the mail yesterday that I wanted to share. Yes, I know in the letter it asked me not to share this info, but I had already soiled the name of CMN to a couple of you so I wanted to show you that they have come around and that they're sticking to their word. It made me realize that CMN doesn't usually work on individual basis so that made things a little more clear. Here's what it says:

Dear Ms. Wilson: (that's me)
Hendrick Medical Center Case Management Department has agreed to provide your son, Miles Wilson, with a Bair Hugger Warmer and 10 pedi blankets using Children's Miracle Network Funds. It is a rarity to have funds available to provide for individual children. However, considering the extreme circumstances surrounding the seriousness of Mile's chronic condition, we feel it is appropriate in this isolated instance to be able to make this contribution. As such, we would appreciate your discretion in receipt of the equipment.
We sincerely hope having a bair hugger warmer at your home will help keep Miles out of the hospital by maintaining a more normal core temperature.

Then it's signed by someone...Her name is then followed by all these initials: RN, MSN, CRRN, CCM, FACHE

That's a lot of initials.

I'm hoping this machine will help keep Miles out of the hospital! I'm thankful that CMN is buying the machine. I guess we need to keep that info to ourselves. Don't tell every little boy in a wheelchair with bluish feet that CMN will buy him a machine to warm him up. They would not appreciate that.

I'm so glad God is Miles' provider.

Thursday, November 06, 2008

So Cool!

At you can create your own virtual model and then try on clothes to see what they would look like on your body! I tried it out and it looked pretty accurate. That's unfortunate for them because I really liked the dress on the skinny model. Oh well, still cool!

Wednesday, November 05, 2008

Thanks Amanda!

Amanda took the best Family Photo for us tonight! I think I'm going to use it for our Christmas cards even though the boys have shorts on.

Monday, November 03, 2008

Randy & The Guys

These hard working guys took a break to show off for my camera today!

Saturday, November 01, 2008

Fresh Tomato Soup

Yes, I took this picture!

Erica gave me this recipe so long ago when we had Super Life Group. The theme was Hawaiian night and I made this soup. Since then it has become a family favorite. Spencer and I made it last night and it made him so happy. My family loves it with a warm loaf of french bread. This soup taste very much like the tomato soup at le madeline restaurant. I thought I would share it with you.

4 Cups peeled, diced ripe tomatoes. I buy the Basil, Garlic & Oregano diced tomatoes.
6 Tbs. Butter
4 Tbs Flour
1 tsp. Salt
Dash Pepper
1/2 tsp. Baking soda
2 cups Half and Half
3/4 cup Chicken Broth
Mozzarella cheese (optional)

Simmer the tomatoes in butter for about 5 minutes; whirl smooth in a blender. Sprinkle in flour, salt , and pepper, blending. Bring to a boil; reduce heat and cook 2 or 3 minutes, stirring constantly. Add baking soda and half-and-half, cook until slightly thickened. Stir in chicken broth and heat to simmering. Sprinkle the top with mozzarella when it's in the bowl.

It's so yummy!

Friday, October 31, 2008

Big Step

Today I'm giving Randy a key to my house. I think it's time. This is a big day for us.

Wednesday, October 29, 2008

What's in a Lunch?

The kids have to take their lunch to school everyday. I have retired from lunch making. Now Randy makes the lunches in the morning. You may be wondering why I would add such a mundane chore on here. If you take a deeper look into what lunch making means for us then I think you’ll understand.
4 kids take lunches to school everyday.
That’s about 772 peanut butter and jelly sandwiches a year.
That’s also 772 bags of chips and 772 desserts.
They each take 2 drinks a day so that totals 1,544 a year.
The drinks cost $1.78 for 10 of them.
That alone totals $274.12 annually.
See what I mean?