Okay, well, emotions were high yesterday. Yikes.
Things are more level today. Well, Miles is the same, but I’m more level.
Miles was put in the hospital. When we got here the nurse couldn’t even hear his heartbeat because his chest is so congested. I’m not sure how long we’ll be here. I just want Miles to hurry up and get better. The poor guy is miserable.
Anyway, that’s about all I have for now. I do hope we get a better night sleep tonight. Last night nurses were in Miles’ room all night. I finally gave up at five in the morning and got up to take a shower.
I’ll update when there’s something to tell.

It's not easy.

I’m taking Miles to the doctor at 2:00 this afternoon. (Sunday) He hasn’t had a wet diaper in three days. I’ve been giving him liquid with a medicine dropper. He chokes on the liquid most of the time. He went to the doctor last Monday and he’s already finished the antibiotic. He’s been on breathing treatments for almost two weeks now. His body temperature has been consistently 90 degrees. He’s been sleeping like he’s in a coma. I’ve been barley able to get his medicine down every day. I was proud of that until I talked to Trish and she told me that since he hasn’t been getting any liquid that the medicine is highly concentrated and that it could damage his kidneys. He can’t breathe well. His lungs sound slushy. His bruise from his fall won’t go any where because he has poor blood flow. The kids have complained because they haven’t seen Miles smile in so long. My husband is freaking out because Miles is so sick. I’m in awe of how little I can help him. He’s been sick more this year than he hasn’t.

I called a friend the other day because I was overwhelmed with all of this and this is what she said, “The thing is that you and Randy make it look too easy. We don’t realize how hard it is.”

Well, to dispel that I thought I would tell you how severe it is.

Right now I just finished giving his breathing treatment. He hasn’t had a full meal in days. His body is shaking from the medicine in the breathing machine. His eyes are flittering trying to open, but they can’t. His mouth is hanging open. And I can hear his breathing.

I’m going to take him to the doctor and I’ll be very surprised if he isn’t admitted into the hospital. I passionately don’t want to go to the hospital. Do you have any idea how much juggling I have to do when he’s in the hospital? I have four other children.

Is this a bummer of a post?
Yes.
If I’m making it look too easy, well, let me tell you…It’s not.
It’s hard.
It’s life sucking hard.
It’s a lot of bad words that I don’t say hard.

Lunch

Today I took a perfectly unhealthy lunch and made it worse.

I planned on making grilled cheese sandwhiches on white bread to go along with the tomato soup I already made.

When I was getting the cheese & butter out of the frige I saw that I had previously cooked up some bacon.

Grilled cheese bacon sandwhich. It was so yummy I ditched the tomato soup.

I washed it down with a Crystal Light Lemonaid. Does that help any? I didn't think so.

I'm watching the Laughlin boys while Aaron is working this week. They've been perfect. I've enjoyed having them around. I just love sqeezing that Jaxon boy!



Please pray for Miles. He's just not doing well. I'm trying hard to keep him from pneomia again. He's sounding pretty rough. Also, he's had some other major things going on that the Lord needs to heal. Please listen, I don't mean he's just got a cold and I'm asking you to throw up a 15 second prayer. I'm saying that Miles really needs the Lord to do something major in his body all over! He's not doing well. Thank you ahead of time.

Perseverance

Today I’m not in the mood to “endure all things.” Not that it really matters that I’m not in the mood. The Lord hasn’t asked me if I’m ready to have Miles healed, and go on with my medical equipment free life.
My life remote has not been delivered where I can push pause while I hide under my covers and try to find my center.
Vacation is not available.
Clones are creepy. Handy but creepy.
Unfortunately, I’m not very easy to replace.

James 1:2:4 drums in my spirit.
Consider it pure joy, my brothers, whenever you face trials of many kids, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.

So although I’m not “in the mood” to endure all these things, I have a higher calling. I’m after perseverance. I know when perseverance has finished it’s work in me that I will be mature and complete and not lacking in anything.

So now I just have to convince myself that I will indeed have perseverance finish its work in me.

Lord, you know my inner most being You know that I’m weary. I need your rest. I need completion in the works that you’ve started in me and my son. I’m ready for you to show off in Miles’ body! He needs you in every fiber of his being. So do I.

Rough Week

It’s been a rough week for Miles. He was at the hospital for several days, he got a yucky cold there so I’ve been suctioning him every five minutes since we’ve got home and today…

Okay, really, it was one of the saddest things I’ve ever seen in my whole life! Me and the kids were outside getting in the car to go shopping and to go to the library this afternoon. Miles was in his wheelchair and Spencer had wheeled him to the back of the Suburban while I was locking the door. I saw the accident happen, but I can’t really say how it happened. I don’t know if Spencer tripped a little or if he just turned Miles the wrong way, but I saw Miles’ wheelchair fall to the side and Miles fall out of it onto the concrete. I threw my stuff down and ran to Miles. When I got to him he wasn’t moving at all! He wasn’t making any sound at all!

I tried to pick him up but the wheelchair had pinned his arm down. I lifted the wheelchair off of him and then picked him up. He started sobbing! He cried a terrible cry that I’ve never heard before. We were all just mortified! I took him to the porch to check him out and he had a scrape above his eye that was bleeding a little bit. He was crying so hard that I took him inside so I could just hold him and love on him. Spencer kept saying, “I’m sorry Miles. I’m sorry Miles.” I told him that Miles would be fine, and that I’m positive that Miles’ forgave him. Joey and I had tears in our eyes. We all prayed for Miles to be okay. Joey started to lay his hands on Miles’ head, but he didn’t want to hurt him he said.

After awhile Miles calmed down. The poor guy. He’s never been hurt like this before. Ya know, we had decided when we started using the wheelchair that the kids could push him and play with him. We decided that he’s a toddler and that toddlers get hurt sometimes. We don’t want Miles to be a sterile child where no one can touch him. What kind of life would that be? Well, until now it’s never been a problem. He’s never been hurt like this. He’s rounded a corner or two too fast, but never got hurt. As terrible as it was to see Miles like that I have to say that we will still let the kids push him. Spencer really wasn’t doing anything wrong. It was kind of a freak thing. Something great that I'm really proud of is that I didn't yell at Spencer. I was very calm throughout the whole thing. I would have felt even worse if I had taken out my emotions of Spencer. I know he never would have done anything like that on purpose! I'm so thankful that didn't scream and make things worse!

Anyway, I felt physically sick for about an hour afterwards. Seeing Miles is pain like that really hurt me. He’s the sweetest little boy I know, and I felt terrible that he got hurt.

I was shopping at Hobby Lobby and I caught myself avoiding people down the aisles. I mean, what does it look like when you’re little wheelchair boy had a black eye? That seems wrong! Poor little boy!

As hard as he cried I still think me, Joey and Spencer hurt more than he did.




Can you see the bruises on his forehead?

Here's What's Going On...

UPDATE:
We have to stay another night. Miles' body temperature was freaking everyone out. He already has a low grade temperature. I have to reassure them all the time of this. But, it did get really low. It was down to 90 degrees. That happened the last time we were at the hospital in January. I’m thinking that it happens a lot. More interesting info about that one later.

Also, his procedure was at 8:00 this morning and he didn't wake up until 3:00 this afternoon, again, freaking out by the nurses. It’s probably because of his temperature that he was so hard to wake up. Again, more details about that one later.

The good thing is that the test came back positive. His body responds very well to the baclofen. His body is so free right now. The doctor just came back in to check on him and told us that it was like "Cinderella" at night the medicine will wear off and his body tone will go back like when we came.

The shocking news is that the doctor wants to put this pump in Miles in two weeks instead of in a year from now. He totally agrees with me that Miles needs freedom in his body. He will be the youngest to get this pump. Tomorrow the neurosurgeon will be in to see Miles and tell us if he can possibly fit it in him body. As with everything with Miles I have mixed feelings about this. Part of me is so dang excited because it will mean that Miles will have continuous ability to move his arms and legs. He hasn’t been able to do this in so long that I can’t even remember it. Of course the other part of me absolutely detests the thought of something foreign in his body that is hooked up to his spine. I’m sure you understand.

So, that’s the update. Randy and I are getting another luxurious night in the hospital.

Intrathecal Baclofen Pump System

The first day of Spring Break and where am I? What kind of glorious day am I having? What exciting trip out of town am I having? Well, I'm in Ft. Worth doing a trial run of Intrathecal Baclofen on Miles. You can read and see what in the world it is. It's such a strange feeling to be praying that Miles will hurry up and grow a little more so he can get this done to him. Right now he's chubby enough to get it done. He just has to grow a little bit longer. His nuerologist wants him to have it done as soon as possible. Kids Miles' age hardly ever get it done this early. He just needs some freedom in his body!





What is baclofen?Spasticity is a motor disorder characterized by tight or stiff muscles that may interfere with voluntary muscle movements. Baclofen is a muscle relaxant medication. It is commonly used in adults to decrease spasticity related to spinal cord injuries or multiple sclerosis. Baclofen is also used to treat children who have cerebral palsy.

How does baclofen work?
Spasticity is caused by an imbalance of excitatory and inhibitory input in the spinal cord. This imbalance causes hyperactive muscle stretch reflexes. These reflexes result in involuntary spasms and increased muscle tone.
Baclofen works by blocking the release of excitatory neurotransmitters in the spinal cord. Ideally, baclofen restores the balance of excitatory and inhibitory input to reduce muscle hyperactivity. In this way, it also allows more normal motor movements

What is the baclofen pump system?
The baclofen pump system is the intrathecal (directly into the spinal fluid) method of delivering the medication. The system consists of a catheter (a small, flexible tube) and a pump. The pump--a round metal disc, about one inch thick and three inches in diameter--is surgically placed under the skin at the level of the abdomen.
The pump stores and releases prescribed amounts of medication through the catheter. The pump has a 10-mL fluid capacity and can be refilled by inserting a needle through the skin into a filling port (called the diaphragm) in the center of the pump.

THIS IS WHERE I AM TODAY!!!!!!!

How will my doctor know if the baclofen pump system will work?
If your doctor recommends the baclofen pump system, you will have a trial of the intraspinal therapy to test the potential effectiveness of the medication. During the medication trial, a small needle is placed near the spinal cord in the lower back. The medication is injected into the spinal canal and you are assessed over 8 to 10 hours to determine how well the medication treats the spasticity. If your muscles don't relax during the first trial, a larger dose may be given the next day to determine its effectiveness.
This procedure causes minor discomfort. You may experience temporary muscle weakness due to the relaxing effect of the medication. This is caused by receiving a large dose of medication all at once during the trial.
Patients who experience positive results with the intrathecal medication can decide with their doctor if they should have a baclofen pump system implanted.
What are the potential advantages of the baclofen pump system?

Typically, the intrathecal baclofen pump:• Effectively reduces spasticity and involuntary spasms, promoting a more active lifestyle, better sleep, and reduced need for oral medications.
• Continuously delivers baclofen in small doses directly to the intraspinal fluid, increasing the therapeutic benefits and causing fewer and less severe side effects than that seen with the oral medication.
• Can be individually adjusted to allow infusion rates that vary over a 24-hour period. It can be turned on or off or programmed to infuse different levels of medication throughout the day, depending on your needs. For example, people who find their spasticity helpful in maintaining leg extension for standing or walking can have a lower infusion rate during the day.
• Can be turned off if spasticity reduction has shown no benefit.

Alley Cats

Monday night at about 9:00 Randy was being a great husband by taking out the trash…without even being asked. He went out through the boy’s bedroom to the back yard and threw one bag away. A few minutes later he popped his head through the door and asked me to bring him the other bag of trash. His shoes were muddy so he didn’t want to come into the house.
When I took the trash bag to him he told me to come outside because there were four bums outside in the alley and one was playing a guitar. I stuck my head outside and sure enough there was really loud guitar music coming from beside our trash cans. We have a privacy fence so I couldn’t see anyone, but it was so loud I thought the lead singer could possibly have a mic some how. He didn’t. He was such passionate.
I crack up at the singer, just one of the joys of living three blocks away from the Salvation Army. Randy got a huge grin on his face and said, “I think I’m gonna join them!” I laughed, but Joey didn’t. He showed definite concern about this situation and voiced his disapproval. I said, “What, are you going to tip the guy or something?” Randy said, “Yeah, go get me a dollar.” I’m cracking up at my obviously entertainment deprived husband and went to get him a dollar. When I gave him a dollar he said, “Hey, and get me a beer from the fridge.” Joey just shook his head and washed his hands of his Dad’s behavior. I took Randy the beer, looked directly into his eyes and said, “Bring Back Details!!!!”

About 15 minutes later I saw him come in with a limp. I yelled, “What did they do to you?” He grinned real big and told me that he just had muddy flip flops.

He told me that if I wanted details that I needed to get something to write with. I grabbed my laptop and we sat at the kitchen and laughed so hard that we had to gasp for air.

Details:
So, at about 9:00 at night there were four homeless guys hanging out in our alley and one had a guitar and was playing it loudly and putting on a show. Each of the four men had their tall can of beer inside a tall brown paper sack. Randy went out there to join them when one of them said, “Hey, we’re just out here havin’ some fun. You ain’t gonna call the Laws?”

Randy assured them that he wasn’t going to “call the Laws.” He said, “My wife told me that if I was going to come join you that I had to bring a tip.” That’s when he gave the dollar to the singer. The guy threw it in his guitar case.
The singer’s name is C.R. Perdy. He is about 60 years old and has a small frame. It was easy for Randy to remember his name because he kept inserting it in all the songs he played. He began to sing a song he said he wrote himself about Johnny Cash called “The Man in Black is Dead.”
When Spencer heard this he kept repeating, “The man in black is dead. The man in black is dead.” Joey, who is above such nonsense said, “Stop saying that. It’s not appropriate.” That kid cracks me up with how serious he can be sometimes.
After that song C.R. said, “Do you want to hear some Jimmy Buffet?”
C.R. began to sing “Margaritaville” and all the guys got excited until they realized that ol’ C.R. was going to be making up the words as he went along. Randy said that for some reason C.R. kept replacing the words “Margaritaville” for “Austin Texas” or “Daytona Beach Florida.” Also during Margaritaville he kept going on a tangent about bikers and a woman with long black hair.
Randy said that C.R. had his guitar strap attached with a strap, and every once in awhile he would stop singing, sling his guitar to his back, say something, and then sling his guitar back to the front to continue singing. One such time he looked at Randy and said, “I don’t know your name.” Randy told him his name. Then C.R. said with a song, “Oh, Randy, like…On The Other Hand.” One of the other guys said, “Yeah, like Randy Travis.” Then the other guy said, “Hey, do you know any Randy Travis?” C.R. just shook his head and said, “No, I can’t know em’ all.”
Twice during this jam session two of the guys stepped about five feet away to pee in our alley. Nice.
The guys kept wanting to hear the blues. C.R. didn’t know the blues I guess. There was one guy there from Philadelphia. Randy said he was tall and stocky. Every once in awhile the big guy would get tickled during a song and he would punch Randy in the arm…Rather Forcefully Randy added. He said he was kind of scared of the big guy even though he looked happy.
One time the big guy started laughing and C.R. swung his guitar around and asked what they were laughing at. The big guy just said, “We’re not laughing at you. We’ve just got our own thing going on over here.”
Before Randy left he was reminded that Willie Nelson was going to be in town the next night. And, wouldn’t you know it…our very own Alley Performer was going to open for him. That’s what was told to Randy anyway. Can you believe that Randy had a Back Alley Pass to see the opening act for Willey Nelson?
Well, after all those details and laughing so hard I was crying I realized that it was 9:24 and the kids were still up. I couldn’t believe how late it was already.
Randy said, “Time really flies when your Jammin’ with Transients!”

Hats Off To Me!

Today at the kid’s school it was “Crazy Hat Day.” I guess that was fitting because I wore a lot of hats myself today.

I began the day with my Mommy hat on as I got four of our children off to school. They had their folders signed, their lunch boxes in their back packs and all their hair was brushed.

Then I put on my Nursing hat as I began to properly take care of Miles. I administered all of his medication. I put on his braces. I gave him his breathing treatments. I also did several other “Nurse/Mommy” things for him.

After that I put on my “Soon to be Student” hat and went to Hardin Simmons. Miles and I went up and down and up and down the elevator as we talked to several people about me getting back to school in the fall. That went well.

When I left there I put on my “I sign up for too many things Mommy hat” as I rushed into the store to buy Friday desserts for half the kid’s school. Miles and I went into the store, I picked out the snacks and we ran back to the car so we would be on time for lunch at the school. Then we took the snacks into school, arranged them, and picked up Melody from Pre-K.

After I dropped off Miles and Melody at home with Shirley I put on my Business Woman hat as I ate lunch with my business partner husband. We discussed both of our future business plans.

Next came my Janitor hat. I cleaned out, vacuumed and washed our Suburban. Then I went to the kid’s school because on Friday’s I’ve started mopping the cafeteria, cleaning the bathrooms, mopping the bathrooms, taking out the trash and then putting the chairs back down on the floor. That is a workout!

Then I threw the Mommy hat back on as I brought home our kids from school…plus one friend. When we got home I made them a snack for after school.

Now I’ve got my Future Author hat on as I try to be creative.

Next up is my Professional Shopper hat. I’m about to go grocery shopping for our family of seven. I will do it with precision and stick to the budget.

When I come home I will throw on the Cook hat to make dinner.

After that I will put on my Leadership hat while I go to a meeting tonight at church.

Then after the kids go to bed I will put on my Special Hat…well, I don’t think I’ll give any details about that one.

Hats Off To Me!

(Make Sure Your Sound Is On)

Oh Yeah! New Phone! Oh Yeah! New Phone! Oh Yeah! New Phone!




Okay, so I know I'm a copy cat! I have the same phone as Amanda, but it's so cool I don't even care if you call me a copy cat! This thing is TOO COOL! I just got it yesterday. So far, my favorite thing about it is when Rachel calls me... Jaxon, in all his chubby glory, flashes on my screen.

Love the song!