June 30, 2010

Red for Conner Day

We all are wearing red today, and spent the afternoon making red bracelets that we can wear to remember Conner. (This was a challenge for Reema, as she seems to have a personal commitment to wearing a completely pink wardrobe everyday). Azer thought it was cool, because red is his favorite color too.

The kiddos let a red balloon go today.

June 25, 2010

Conner Reed Jones

April 14, 2003 - June 24, 2010

It isn't easy to say this. Conner lost his battle with CF yesterday. All I can say is, it should not be this way, that a child that is nearly the same age as my son passed away.

We will all miss you Conner. You were such a brave, strong guy! Rest easy with God.

June 24, 2010

Baseball Never Ends

Yesterday was the last day of baseball camp. Azer had a really great time. His best friend from school was attending the camp too, so they were stuck on each other all 4 days. They played hard for 4 hours each day in the hot sun. When camp was done for the day, they would play catch until we practically dragged them home.

Azer won the 1st place hustle award in baseball camp!

His baseball team also won 1st place ... in case I didn't mention it before. They also got 7th place in the state of Texas. Baseball season went fast for him.

We went to a Rangers came last night, compliments of some friends!

Azer yelled at the players from the 1st to the 9th inning. I can't believe he still has a voice today. He was so into the game, it was incredible. For a 6 year old to pay attention to a game for that length of time is something else. Oh yes ... and the Rangers won their 11th game in a row, so right now it's fun to be cheering on the winning team.

Rally hat time.

June 18, 2010

Summer is here again

The day before yesterday was one of those perfect summer days. We went to the park in the morning and played catch for 2 hours underneath tall, green, leafy trees. Looked at bugs, chased squirrels, played in the dirt.
Then, we went home and swam in the pool for about an hour. This was the first time Azer was getting his G-button under the water. He took it slow as he wasn't sure what it would feel like, but after he realized it wouldn't hurt putting his stomach under the water, he was jumping and splashing and swimming. He threw a tennis ball back and forth with me for almost the entire time.
THEN ... they still weren't tired, so we rode bikes in 100 degree weather for about another hour. No signs of exhaustion whatsoever.

Yesterday, I took them to a local water park. It has a few water slides, one of them is completely dark inside, like a long, black, tunnel. Well, we had no trouble with the G-button on those either. A couple kids asked Azer what it was, and he just said, "It's a feeding tube, cuz I don't eat enough food to gain weight." We were there nearly the whole day, and when the park finally closed, the kids were all ... "Awwwww, why are they closing it?".
I've been noticing Azer has had more "muscle" in what he does. It's hard to put my finger on what has changed, but it's something besides weight gain, which is what he was getting from the Scandishakes. Maybe it's the extra protein. I'm not sure. He seems to have just pure strength lately.

And, I just think it sounds weird, I never thought I would ever say something like this but ... gosh, his mic-key button looks so nice! It's a bit sore for him when we clean around it and turn it, but otherwise, he doesn't even remember it's there.

June 14, 2010


Well, Azer has had a few surprises since he's been home. The mom of one of his friends had some connections with the Rangers. The day after he got home from the hospital, she brought over his very own official photo, autographed by Ian Kinsler. Azer was especially surprised to hear that someone had told Ian Kinsler about him. Azer was beaming from ear to ear thinking about how the Rangers knew about him.

And yesterday, Azer got his other love fulfilled. Cars. A very nice friend of his Kindergarten teacher owns a Corvette. He let Azer and Reema ride in it, and even let them steer. Azer was thrilled, and is still talking about it.

We are also happy to report that Azer is eating food, and seems to be hungrier, especially in the evenings. This is a BIG change, seeing as before G-tube he was rarely hungry at all.

Feedings are still going well. I started him out slow on the new enzymes, Zenpep again. He is supposed to be taking 3 with meals, but I started out on one enzyme with meals instead. The next day I did one and a half, and today I have done 2. He has had no vomiting or retching so far. Depending on what his stools look like, I might just stick with two for now.

June 11, 2010

Going good so far

So far, we've had no problems with feedings at night. The day after we came home however, the pump kept telling me "No Feed Out" and he missed his feed for that night. I took the pump, and Azer to the hospital the next day and it never gave that error, so the nurse there was thinking maybe there was some sort of blockage in his stomach. She said sometimes medication can block the flow out, or maybe some piece of food. Anyway...

He has had pretty much no pain whatsoever and has been running, jumping, and doing everything he normally does. He sat during another tournament game today and watched his buddies play, but had a great time with them in the dugout. He is even playing catch. It's great to see him back doing what he loves.

I also finished this video yesterday. Let me know what ya'll think.

June 8, 2010


We are home now. It's been an adjustment trying to figure out how to schedule everything. He did fine with the 2 1/2 cans of formula last night, so tonight it will be the three cans, which is as much as the doctor wants to give him for now. I think Azer needs some enzymes at the end of the feed because he is still having floating stools.

We are staying on the Pancrecarb for now, until next week. Then, we will try the Zenpep again. I am really nervous about it. I really hope he doesn't start throwing up again, because that was the whole reason we went to the ER in the first place.

Tomorrow, if it doesn't rain, Azer's baseball team has a championship game right next to the Rangers stadium. I will take him and have him sit in the dug out. I know he really wants to play, but we need to keep him a little less active for another week. It's hard to imagine just 5 days ago, he was having a hard time getting out of bed. Now, it's hard to keep him from running and jumping and climbing!

June 5, 2010

Getting there

It looks like we'll probably be going home on Monday! Yay!

Azer had very little pain yesterday. He was walking around normally. Maybe once every few hours, he had some pain, but I think that's because he was moving around so much. His baseball coach came to visit him, and Azer threw a ball back and forth. We also saw Reema yesterday (hi Reema :) It was so good to see her after almost a week! She misses her brother a whole lot.

Azer was constipated yesterday, which is totally normal for having taken morphin. Plus, he hadn't been moving around much for about two days.

It's good to have the old Azer back!

We got the pump we are taking home with us. They delivered it yesterday here in our room, so I've been learning a lot, and learning how to use the pump, and how to hook Azer up. He has been tolerating the overnight feeds so far. They are running for about 10 hours. Last night he received a little more than a whole can of formula. Tonight, they will try a can and a half. So, I guess I will keep increasing the amount at home until we reach 3 cans a night.

The pump can be dropped with no harm from 3 feet in the air, and it can also be washed with soap under running water. It's only like 1 pound, and the battery can run for a whole night without being plugged in, which is pretty cool. They also delivered a IV pole to us, but it's light and easy to push around.

June 3, 2010

Things are getting much better

He still has some pain when walking, but he is able to sit in the bed without leaning against the bed. He is sitting straight up and using abdominal muscles. He is also going to the bathroom on his own.

He had pedialyte through his G-tube for a few hours and everything went in fine. He also got his first meal. He ate half a taco on his own, which is pretty good.

He is still taking the old enzymes, Pancrecarb for now. They might be starting the new enzymes tomorrow. They need make sure he is tolerating the enzymes and not vomiting with them before they send him home. So please pray that they can figure his enzymes out.

Here is a picture of his Mic-key button.

There is gauze on the side of it to make sure it doesn't rotate. The gauze can come off in a week. There is no bleeding or leaking so far.

The other white strip on the lower area is over his belly button. It is like a really strong bandaid, replacing the need for stitches. That was where they inserted the camera.

As you can see in the video ... he's doing really well for just having surgery yesterday. :)

Getting better slowly

Yesterday was pretty rough. He couldn't urinate while sitting in the
bed, so we carried him to the toilet. He seemed to be in a lot of
pain, but he walked back to bed by himself.
Last night was a little rough. He cried off and on through the night.
He is on pain meds, but not morphin. He was able to slowly get out
of bed this morning so we could get him cleaned up. He is very mucusy
today. It hurts him to cough, but a lot is coming up. Hopefully he can
get a breathing treatment soon. He's going to be off the vest for a
while, so it's CPT for a while.

June 2, 2010


Lol. He's out of it.

He's back in his room

He made it through great. And he's got a brand new mic-key button. He
is in some pain. He has had three doses of Morphin so far. He's kind
of out it right now but is answerig questions. His oxygen was a little
low so we are making sure he is taking deep breaths.


The surgeon came out and said everything went fine. He was able to put
the button in. All stitches will desolve. No food or water for 24
hours. He will have a tube draining his stomach just for today. :)

In surgery

Well, they wheeled him back a few minutes ago. It should be from 30
minutes to an hour. They gave him sedation medicine, and he was acting
all goofy and silly. He gave me a kiss before they wheeled him through
the double doors.

Wheeled down

We are wheeled down to the sedation area. Taking blood pressure and
oxygen. He's a little nervous but is not crying and is coloring.

June 1, 2010

G-Tube maybe tomorrow

So, after having multiple conversations with an uncountable number of doctors and surgeons, it looks like Azer will most likely be getting his G-tube tomorrow morning. The last doctor I spoke with said she is able to put the button in, instead of having to put in a 12 inch tube first, and then waiting about a month for the button. If they can do it that way, I'm sure Azer will be pretty happy. Regardless, I think Azer is getting better about talking about the G-tube. The Child Life specialist came over again today to talk a little more with Azer. I think since I've been more relaxed talking about the G-tube has helped him relax more about it as well.

Soo ... send prayers and good thoughts our way. I'll write a post as soon as something else happens.

Addition: The actual surgeon walked in a few minutes ago ... here are the details. They will made a hole in his belly button where they will insert a laparoscopic camera. They will made an incision in his side where they will pull the stomach up to the surface, and they will inflate his abdomen with gas so they can see. If everything goes ok, they will put the Mickey button in. If things don't go right, they will make a larger incision and insert the 12 inch tube.

GI study done!

Well, Azer just got done with his GI study. He laid down on a table
and had a big x-Ray machine over his stomach area. He then was
supposed to drink
large gulps of the barium. But he couldn't drink enough of it, so
unfortunately he had to have an NG tube put in temporarily. They shot
barium down the tube and into his intestines, stomach and esophogas.
The good news is that he does not have SMA syndrome or any other type
of compression. All the "tubing" is where it's supposed to be. We did
see the reflux however, so that's probably why he has such a hard time
eating. He probably doesn't know what it feels like to not have it.
Azer said the NG tube was really nasty. He was gagging and crying
through the whole time. He says the back of his throat hurts a little.
After they pulled it out, he said he's hungry. I'm going to order food

GI Study

Well, per doctor's order, Azer has had nothing to eat or drink since 4
this morning. I guess they want him to have an empty stomach. If
everything looks good, he will probably be getting the G-tube on
Wednesday. Azer says he feels angry about it, because he doesn't think
he needs the tube. He'd prefer to just keep drinking milkshakes. The
GI study is scheduled in about 20 more minutes. But, sometimes things
get delayed. I hope not though, Azer says he is hungry.
Yesterday he would say he was hungry before meals, but he didn't have
very much to eat.