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!