Monday, May 11, 2009

Prayer Room

Every since the BFW in April I really had a desire to have a Prayer Room in our house. I thought it would be so great to have a room that was always prepared, clean and a place to go for prayer and worship. I love the Prayer House in Clyde, but it seems to be an ordeal to get there. I don't always have the time for a 40 minute drive, plus time while I'm there. Anyway, I talked to Randy several times about how I really wanted one, and we enjoyed trying to think up how we could do it. While I was gone on a women's retreat Randy made the Prayer Room a reality. It's so awesome! I can't explain to you how amazing it is! I've had it for over a week now and it's been an amazing blessing for our family.

Randy took in part of our office to make the Prayer Room. Almost everything, including materials were donated!!!! How amazing is that??? The materials were donated by Mike & Cherry from the scraps. Brenda Becker gave me a chair that belonged to her Great Grandmother! I feel so honored by that! Sherry Peters donated the material to recover the chair and also some for the valance. Emily Porter gave us an AMAZING painting that she was actually selling for $1000. No, I'm not kidding!!! Melody bought me a candle holder. Randy bought me a CD player for the room so worship music can continuously be playing in there. Also, Randy and Spencer donated lots of hours of hard work to make the room perfect. I feel so blessed!

When I walk in the room I immediately feel the presence of God in there. The world seems to fade away and I can pray without distraction. Everyone has enjoyed the room. The kids have been going in there and praying before school. (They do this all on their own.) Also, they have journals in there where they can pray or draw pictures for Jesus. Miles has taken a couple of naps in there. He sleeps with a little grin on his face. I believe angels are ministering to his body in there!

For Randy and I it's been a place of intimacy with the Lord. I'm thinking that everyone needs a Prayer Room in their house! It's so much easier to enter into conversation with God without all the distractions of this world going on around you. At life group this week we prayed together in there. It was so powerful!

Anyway, Here's some pictures of it.

The first one is of the outside of the room. It's not finished yet. The rest of the room is done! It's so beautiful! I'm very thankful!!!!!!!







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Wednesday, May 06, 2009

8 Things

Hey, I figure if this topic can bring Francesca back to blog then I can surely do it! So, thanks Rachel!

8 Things I Am Looking Forward To Do:

1. Seeing Miles totally healed!
2. Being a part of something that is world wide amazing!
3. Seeing my name & book on the #1 Bestseller's List.
4. Being a Grandmother. ( I know this is far far off, but I'm still so excited to hold Spencer's Red Headed Babies!)
5. Summer with the kids.
6. Not owning any medical equipment at my house.
7. Seeing my children marry Godly men & women.
8. Buying a Medium shirt for myself.

8 Things I wish I Could Do:

1. Go on a responsibility free vacation with my husband.
2. Enjoy vegetables & working out.
3. Go to a spa regularly.
4. Heal everyone with brain problems.
5. Be mechanically inclined.
6. Have my Mom's house totally remodeled.
7. Tell my Grandma Jody one more time how much she meant to me.
8. Never have to sleep.

8 Shows That I'm currently watching:

1. The Office
2. Parks & Recreation
3. 30 Rock, man I hate admitting that I like that show!
4.
5.
6.
7.
8.

I will tag...hmmm...Cherith, Cherry & Annie.

Tuesday, May 05, 2009

Pump Overdose

Where do I begin?

Last Tuesday I took Miles to Ft. Worth to get his pump refilled. That appointment seemed to go just fine. (I posted pictures last week of the appointment.)

Well, Thursday during lunch I got a call from the hospital in Ft. Worth and the nurse that we saw on Tuesday asked me how Miles was doing. At first I said fine, but then I realized that he had been acting a little strange that day. I had taken Miles with me to my hair appointment and the lady that always does my hair noticed that Miles’ eyes looked glazed over. Also, he had been gagging a lot. He kept trying to throw up but he can’t because of he’s had a fundoplication. Anyway, so I told the nurse what he was doing and she asked me more questions when I finally said, “Why? What’s going on?” The hospital doesn’t usually make follow up calls to check up on him especially for a routine appointment.

That’s when she told me that when she refilled the pump she didn’t regulate it correctly. She explained that he was getting a concentrated dose directly to his spine instead of a regulated dose. He received a bolus of baclofen instead of getting it gradually.

She had just realized what she had done, and I was in the middle of lunch so both of us were having trouble deciding what to do. I already had plans to teach at Holli’s women’s retreat near San Antonio that weekend and I had already been to Ft. Worth one time that week so I was not in a hurry to drive up there if it wasn’t necessary. We were trying to figure out when I needed to come up there to get the pump checked up. I told her that the next week I was really going to be busy because I’m subbing a lot, and the first part of the following week she was going to be on vacation so we decided that I would come on the 13th to get it checked out. She was uncomfortable about that so she said that if Miles had any problems during the weekend that I needed to bring him on Monday. I agreed then we got off the phone.

I was eating lunch with Randy and his friend Bryan at that time so when I got off the phone I told them what was going on. Randy didn’t like the idea of us waiting until after the weekend to go there. He told me to call the nurse back and ask her if I needed to just go up there that day. This is so interesting to me because this is major role reversal here! I’m the one that is usually aggressive about Miles’ care. Randy’s usually the laid back one! I’m the one that thinks things are more serious and Randy’s the one that thinks nothing is wrong at all.

I had so many things to do to prepare for my upcoming trip that I didn’t want to take the time for a wasted trip to Ft. Worth. Randy didn’t want to risk something bad happening while I was gone for the weekend so he wanted me to go. I called the nurse back and she was relieved when I told her I could come that day.

I was already in Clyde so I traded vehicles with Randy and we were on our way. As I was making the 2 and a half hour drive Miles’ body seemed to be having difficulty. He was sleeping, but a couple of times he would open up his eyes and they were kind of rolling around. By the time that I got him in the clinic the nurse and doctor were concerned for him. He was so limp you could have balled him up and thrown him across the room. He had a very low breath rate. As they watched him the doctor said that they needed to keep him over night to monitor him.

I was shocked! I had not once thought about the possibility of him staying the night! I was not prepared at all! I didn’t bring anything with me. And listen to this…I have no idea why in the world I did this, but I woke up that morning feeling like I wanted to dress up that day. I didn’t want to wear my normal “mom clothes.” I was getting my hair done that morning so I wore a nice dress, uncomfortable shoes and I’ll admit…uncomfortable panties. Dang wanting to look cute! I went and got my hair done that morning and when Cindy, my hair dresser styled my hair she curled it instead of straitening it. I love when she straitens my hair so when I saw she was going to curl it I almost told her not to, but I figured it didn’t really matter so I just let her do it. She curled it, pinned it up a little bit and then sprayed more hair spray in my hair then I’ve used in my hair in two years! So, I’ve got a nice dry clean only dress on, cute/uncomfortable shoes on, uncomfortable panties and great big Barbie looking hair!

Miles gets put in a room at the hospital and as soon as he’s hooked up to all the monitors every alarm on that thing went off! There was no stopping it. All the bells and beeps were going off and the nurses were trying to set the controls lower so it wouldn’t be going off constantly. I was in the room for just about 2 minutes when the nurse told me that I needed to go downstairs and go to registration to get them his insurance stuff and so I could sign paperwork. That needed to be done before he was in the computer. Also, they told me to get something to eat in the cafeteria while I was down there because by this time is about almost 6.

I went downstairs, got some food from the cafeteria and took it to the car to eat so I could charge my phone a little because it was going to die if I didn’t and I knew I would need to use it a lot. So, I did that and then went in to register. As I was waiting for my turn to do that my name was called and they told me that I needed to go to Miles’ room right away. Let me assure you that this does not bring comfort to one’s soul. I had to make my way across the hospital and up to the 6th floor. Again, those cruddy shoes! When I got up to the 6th floor I found out that Miles had already been taken to the ICU. They tried to find me before they transported him but they couldn’t find me because I was in the parking garage. They decided that they couldn’t wait any longer because all his stats were dropping.

He was getting rapidly worse. Everything was dropping. His heart rate was down to 30 (when he left the hospital his heart rate was 109). His blood pressure was getting lower and lower so was his respiratory rates and his temp was down to 90 degrees.

When I got to the ICU there was a whirlwind of activity.
At the clinic they had already fixed his pump, but there was no way that they could remove the medicine from his body because it goes directly in his spine. If I were to overdose on baclofen then they could induce vomiting to help get it out, but they couldn’t do that with Miles. So they began to try to warm him up with a Bair Hugger and we just had to wait and see.

As his temp started to rise, his stats began to get better. He was still completely out of it, but he began to do better. After a couple of hours of being like that, he all the sudden opened his eyes, smiled at everyone and was his usual happy self. It was like God flipped a switch in him! All the things the doctors were worried about with an overdose came back normal. He was just his normal happy self. God rescued him again! I’m not sure he would have survived the night if we had not gone in to have his pump checked. I would have thought that he was just really sleepy like he gets sometimes and he could have just continued to drop his stats and died. I don’t say that for effect or to stir emotions. I just really think that was what would have happened.

Since his body was struggling so hard to survive he was in a deep deep sleep where I couldn’t wake him up. His body was shutting down and I wouldn’t have known that without him being on the monitors. God saved his life once again. I’m so grateful.

I decided since Miles was stable that I would try to get some rest. It had been a very long day. Let me remind you again of what I had with me…nothing! They did scrounge me up a tooth brush (no tooth paste) and some body soap and a bar of soap. They offered to get me some scrubs to wear but I said, “Thank you but no thank you.” So, I slept in my dry clean only dress with the uncomfy unmentionables and used a hospital pillow that was the size of a maxi pad.

I tell ya what though! When I woke up the next morning I made my way to the bathroom and I looked GOOD! My hair looked exactly like it did when I left the salon the day before! She put so much hairspray in it that it didn’t budge! My hair was still pinned up and looked great! My dress was a wrinkle free dress and it was actually wrinkle free. I brushed my teeth without toothpaste and I looked fantastic! I don’t know why that made me so happy but it did!

All night Miles did great. He didn’t sleep a wink. He was up smiling and laughing. He woke me up laughing one or two times. That morning he continued to do great. The doctor released us to go early afternoon that Friday because there wasn’t anything more they could do for him, and besides that he looked great. They let him leave right out of ICU which is so uncommon that the nurse we had didn’t even know how to check him out of the hospital. Usually from ICU you get moved to a regular room to be monitored, but they didn’t do that for him.

I was so glad too because I already had plans that I was really late for. I drove Miles from Ft. Worth to home. When I got there I immediately ripped off my uncomfortable clothes and threw on a wonderful night gown. I took a little nap while Randy picked up our kids from the school. When I got up I showered, packed and left for the women’s retreat that I was supposed to speak at the next day.

I got back in the car and drove and drove. I got to Comfort Texas about 9:30. The retreat went great. I’m so glad I went. I met some really precious women. I instantly felt welcomed with them. I enjoyed being with them. I also enjoyed teaching. I really am so glad I went. A couple of people thanked me for coming even though I had such major family stuff going on. That made me feel so good. It was my honor to be there.

Saturday night after the retreat I made my way home. At first I had planned on spending the night with Holli in San Antonio that night but after one night in the hospital and then one night at the retreat I wanted to be home. I got home at almost 2:00 in the morning. It was a hard drive but it was worth it to wake up in my own bed.

Randy said that Miles slept a lot that weekend. Sunday he was the same way. He would wake up here and there but he slept 99 percent of the time. During the day on Monday he was acting the same way. He was also having sporadic breathing. He was in a really deep sleep where I couldn’t wake him up. I didn’t have peace about how he was doing or how he was looking so I took him in to see the doctor. I’m scheduled to sub three times this week so I wanted to know if he was okay or not.

Well, he wasn’t okay. His heart rate, temp, blood pressure and respiratory rate was all low again. Actually his temp was at an all time low at 84.6 degrees. That is crazy! Miles was put back in the hospital on Monday and he’ll spend another night while the doctor figures out what in the world we need to do. This time though, I’ve got toothpaste, pj’s and I’m wearing panties accordingly. Fool me once…

Tuesday, April 28, 2009

Pump Refill

It was Pump Refill Day for Miles. I drove him 5 hours round trip. He had a hour and a half appointment. It went really well. I thought you might enjoy the details of it all. The Nurse Practitioner was pleased that I wanted to take photos. She said no one has ever asked to that before. I think they had fun.


An hour before the appointment I had to pull over and put some cream on Miles so during the medicine change he wouldn't feel pain. Of course he was asleep, but as you'll be able to tell in other photos...he still got his nap on. I will say that Miles and I did not share a Tequila Sunrise before our road trip. The kid was just tired all day. He slept all day!


OK, here's the belly. Now I've gotta find the pump.

This is what the pump looks like in his body.

Here's the template that I have to use to try to figure out where in the world the pump is in his stomach. There's a little whole in the middle where I've got to line it up so the needle can go in there.

The medicine to deaden the skin.

I put the cream where I THINK the needle will be in later! Ahhh!

Next I placed a plastic covering over the medicine to keep it in place.

I took the paper covering off.

This is me being unsure if I got the cream in the right place.

You can tell Miles took that well. He's such a trooper. Back on the road.

Pretty wildflowers. There were so many beautiful flowers to look at today!

This ant hill looked so cool to me. It was huge!

When Miles used to get Botox all the time the Dr would use this machine to help him know where the right muscles were to inject. The Dr would listen to the sound waves and know where to inject the medicine.

This is the room we always go to when he has Botox or a Pump Refill.

This is all the stuff it takes to change out the medicine.

Prepping the area.

The nurse put the needle inside the port so she could extract the old medicine. She got it on the first try and Miles didn't even flinch.

The old medicine is being taken out.

Now the new medicine is being put in the pump.

All done with that.

Now the Nurse Practitioner is turning up the pump with this hand held computer.

Um, yuck. Here's some advice. If you see a sucker on the carpeted floor of a Children's Hospital...just walk away!

This a cool thing in the waiting room. I'm not sure what to call it.

Sunday, April 26, 2009

POST 501.

OKay Okay! POST 501.



The other night we went to the mall and ate Chick-fil-A. I told Randy that he should go ask the workers for 1 of each of their sauces so we could sample them all. At first he wasn't too hot on the idea, but he ended up doing it then having fun with it. He set up a sauce center for us with the labels showing then we taste tested the sauces. It was just a silly & fun thing to do.


Here's all our sauces.

Cute picture of Randy.

Sorry for the yucky Chicken sandwich bite. I just thought it was funny!

This was both of our favorite. It was Honey Roasted BBQ sauce. Mmmmmm!


So, there's one more thing you know about me!

Thursday, April 23, 2009

POST 500!!!!

This is my 500th post in Blogville!

If you've been reading from the beginning then you now know AT LEAST 500 things about me & my family then you would if you didn't read my blog. Yes, I'm aware of how profound that statement is.

Well folks, if you have been a reader then one of the things that you know about me is that I love words of affirmation and encouragement. I love to encourage and be encouraged.

I'm sitting here at Post 500 with a big question to decide:

WILL THERE BE A POST 501 or is this it? Has blogging ran it's course for me?

Without words of affirmations...I.E. comments...I don't know who even reads this anymore.

I know others have closed up shop and gone on. Am I beating a dead horse here?

I will continue to write these sorts of things down, but I just won't be sharing them with others like I do here. I may put a few things here and there on Facebook, but it's not the same.

So, readers...what do you think?

Should there be a POST 501 or is this it?

Tuesday, April 21, 2009

I desire your opinion.


Miles has seizures.

I hate that he has seizures and I’ve prayed that he would never get them and I’ve prayed for him to not have them anymore, but he still has seizures.

After trying different medications, doses and combinations for the last two years I’ve found a regiment that significantly reduces his seizures. He could have up to 15 or 20 seizures a day, but with the medication he may not have any at all for weeks or months. Sickness plays a lot into how many seizures he has.

He takes two different seizure medications twice a day.

Well, last Wednesday I called in a refill for most of his medications and a couple of the refills had ran out so the doctor had to be faxed to renew the prescription. This is normal routine. That’s why I usually call ahead a day or so in case that happens. Usually the doctor renews the prescription on the same day and I’ve never had any trouble before. This week was different. The doctor in Ft. Worth did not fax the prescription until just yesterday. I called the pharmacy several times to check on the refill. I went over there twice. I called the doctor, Miles’ neurologist to refill the prescription and finally yesterday evening I was able to get his medicine.

That was just the background to what I wanted to say.

Here’s the thing. Miles was out of that medication for 4 and a half days. As soon as the next morning without a dose his body was affected. His arms would jump involuntarily and he would twitch. He had several mild seizures during those days. The fourth day he had a couple of harder seizures; the twitching was still going on and loud noises made him a little over stimulated. It seemed like the sudden loud noises scared him.

BUT, he was so alert! He was very alert those four days. He didn’t take naps all day long. He was awake, alert and happy. He did have seizures during those days, but they only range from about 10 seconds to 30 seconds, and he doesn’t cry after most of them. It’s freaky, but we’re all used to it around our house.

Here’s the thing. He got his medicine last night at 9:00. He got it again this morning. It’s now 11:30 in the morning and he still has not woken up. I knew this was going to happen. I knew since he didn’t have the medicine for a few days that it would knock him out, but it’s not just that. It really showed me how dazed he usually is because of the medicine.

The medicine will regulate in a few days and he won’t be in a coma like state anymore, but he also won’t be who he really is either.

So, this is my question that I would really like your opinion on: Which is better, to be medicated and almost seizure free or to have seizures and twitches but not dazed? Please give me feedback on this issue.

Monday, April 20, 2009

Tip from Grandma Jody

Here's something my Grandma Jody said to me one time that I've found to be sound and true advice.

Never mess around with generic tape.

It's not worth it.



Here's a tip from me:

Hide it from your kids or you will never be able to find it.

Thursday, April 16, 2009

Disneyland 1965

I'm still going through my Grandma Jody's pictures and keepsakes. One of the wonderful things I found was a paper sack from their trip to Disneyland in 1965. Disneyland was celebrating it's "TENCENNIAL." Isn't that amazing? In the bag were several postcards. I thought you would enjoy looking at them. I also have a HUGE map of the Disneyland layout. Another cool thing is a black and white brochure of the park and it has a quote from Walt Disney. It says, "Disneyland will continue to grow, to add new things, as long as there is imagination left in the world." He said that on July 17, 1955 on the dedication day of Disneyland. That has definitely held true. But of course my favorite thing I found is a picture of my Grandma Jody with Cinderella's castle in the background.
I hope you enjoy looking at them.











Monday, April 13, 2009

My Lovely Girls


I took this picture of the girls this weekend in the backyard. I love it!

Saturday, April 11, 2009

Jocie & Jesus

Today when I was giving Miles a bath Jocie was praying. After the bath I had Miles wrapped up in a towel "like Baby Jesus." (That's what Melody told me to do.) Anyway, as I was walking through the living room to get Miles to his room Jocie told me something so amazing! Here's what she said:


I was praying and I asked Jesus, "Why did you pick Obama to be our President?" He said, "Because I need him to." Then she asked Jesus WHY. She said that Jesus said, "Because I love him and I needed to give him a chance."


I was so impressed with what she said. First of all I had no idea that she was concerned with our President. Besides that I'm so glad she's confident that she hears the voice of the Lord. Also, it's just like God to say that he loves Obama and that He's giving him a chance! I also love that she knows even though we vote, it's still up to God who gets put in the office.

I'm so proud of that girl!

Thursday, April 09, 2009

Teach me your ways!!!!

I need to know how your family does laundry! After 4 years of Candy and David doing our laundry...I'm on my own. I've made such a mess of our laundry! I need a routine! Please tell me how you get all your laundry done!

Wednesday, April 01, 2009

Clothes Shopping

I got to go get a couple of new outfits for the BFW. That was a blessing to me.


When I was walking into ROSS I prayed that I would be able to find some things that fit, looked good, the process wouldn't take long and that I wouldn't leave there depressed about how I looked in anything. You know the drill.

Well, I went in, threw anything that I remotely liked in the basket, which happened to be 9 items. I could only take in 8 so I got rid of one. Then I went in my "Lucky Dressing Room." You have a "Lucky Dressing Room don't you? You know, the dressing room in your favorite store that always makes sure that the clothes you have picked out look good on you? It's dangerous to just pop in the first open dressing room that you see. You don't know what you'll end up with! At ROSS I always go to the last door on the left of the first row to try on clothes. Now if someone was already in there I would probably just go to another dressing room. That is unless I was shopping for a special occasion. In that case I would just wait impatiently for the person to get out so I could go in.

In most places that I go to frequently, I have a particular bathroom stall that I go into. I don't go there because it's "lucky" but because it's familiar. At the CENTURY I go to the 4th stall on the left. Always the left side. I don't know if I could make myself pee on the right side. Pediatric floor of Hendrick I use the first stall. I've never seen the rest of them. Hobby Lobby, before the remodel I always went to the middle stall. BTW, they just went from having the nastiest bathroom in town to the nicest! Good for them.

I am a creature of habit.

Good news...I took in 8 items into the "Lucky Dressing Room." I bought 7 of them!!! It was a winner!