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.

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.

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.

Joey

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.

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 from...it 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?

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.

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?

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?

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 Amazon.com 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!

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 is...it'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!

WOW-we!

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.

So Cool!

At landsend.com 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!

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.

Randy & The Guys

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

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!