1st Graders

Today was the first day of school. Two 1st graders now! Reema was so excited about school all this month. She was counting down the days until school. When I walked them in today, Reema practically ran to her classroom. Azer, while not as enthused about it, was happy that his best friend was in his class, and that there was no homework today. Yeah, they are very different.

Reema turned 6 two days ago! It is that odd time of the year where both of the kiddos are the same age. It only lasts for about a month, but it's nearly impossible to explain to people that while they are both the same age, they are not actually twins.

Rollercoasters

We went to Six Flags a few days ago. I learned that Reema is completely fearless, and that Azer likes to ride the Teacup (it's not my fault, lol). Complete opposites. I managed to convince him to ride a big, wooden coaster. At the end, he said he would never ride it again. Lol.

I couldn't help but thinking on that ride that it was just like CF. It started out uncertain, what's around the corner? What is it going to be like? Then you go up, and you keep going up, as the doctors give you information, and hope. "Everything is going to be fine, we're in this together" they said. And then for that very first hospital admission and the pills added and treatments and more medicines than I knew existed, I went down, fast. I didn't know how I was going to do it. How was I going to ever look at this baby boy without crying? And then things evened out. I gradually got better. I started to think, oh ... that wasn't so bad! Look! Totally ok! And we're going up.

Then, wait ... what? The hospital again? More medications? Going down! What is this new stuff they want me to do to him now?  New treatments, something else you find out that isn't right with your kid.

It never ends. Whenever I read back through the years on this blog, I read the "up" posts, everything is great, he's gaining weight, not coughing. And then the "down" posts, he's coughing, he's throwing up, he's not gaining, not eating, IV's, X-rays. I guess you kind of learn to prepare for the downs, try to anyway. But sometimes they come when I'm not looking. Sometimes I'm afraid that a down is going to pop up when I'm not ready for it.

I guess I like carousels better than roller coasters.

Less Formula Again

Well, since Azer started the 4 cans, he was barely even eating one meal a day. He just had no appetite (no wonder with a liter of formula a day right...). There is another problem that's been occurring since we've upped the feedings. In the morning after the feedings are done, he experiences reflux more than I've ever seen. He has to drink sips of water to prevent himself from throwing up.

So, last night I decided to put him back down to three cans. And today he had three small snack-ish meals. Yay food! And no reflux in the morning. So, 3 cans = one happy kid.


Only two more weeks until school starts. I feel sad about it, after spending the whole summer having fun with them. Lots and lots and lots of swimming.

More Formula...

So, remember in the last post, I had tried to increase Azer's enzymes, and it caused him to be "vomiting" over the toilet for like 30 minutes? Well, everytime I try to increase his enzymes, the same thing happens. So, the doctor said that perhaps his weight needs to be higher in order for his body to handle the higher dosage of enzymes, so, they want me to give him 4 cans of formula instead of 3.

It's going ok so far. Sometimes, when we wake up in the morning at the end of the feed, he will feel nauseous, but nothing comes up. He seems to be absorbing the 4 cans better than he did with the 3 cans (odd?).

His appetite ... if that's what you want to call it, has gone into hiding. Well, I suppose I shouldn't expect too much when he's getting almost a liter of formula all night. I haven't been forcing him to eat at all. He'll eat a small amount around dinner time, but that is it. So, we're talking like one slice of pizza, one dollar menu size burger, that amount of food. Not great, but not terrible I guess. He's happy, and has lots of energy, and it looks like he's gaining weight. He's definitely getting taller!

The kids have been swimming almost every day at water parks and swimming pools. Their swimming has improved quite a bit. This year, they can jump of the diving board, and they can do somersaults in the water. They are getting much better at swimming along the bottom of the pool too. I'm proud of both of them.

It's been a great summer so far!

Fireworks on the 4th ... no, not that kind...

I started giving Azer slightly more enzymes since the clinic visit. It was doctor's orders. Well, he was retching over the toilet for more than 30 minutes this morning. So ... I am cutting back on the enzymes again. Maybe he is just really sensitive to the higher dose of Amylase? Anyway ... he seems perfectly fine now. I'm kind of glad we have the g-tube right now though; he won't get dehydrated as easy.

Here are some photos from a little while ago.

Reema loooooves watermelon.

Acapella

I think it's making him cough more than the vest does ... which is a good thing!

Good Clinic Day

So, like others that expect to see great results after getting a g-tube .... tada ... he gained two pounds in about 4 weeks. He grew 2 cm too!

His PFT's were kind of low today, his FEV1 was 75%, which is low for him, but the doctor thinks perhaps it was low because he had some abdominal distension. Otherwise, he overall looks really awesome!

Well, we aren't just happy because of a great clinic day. Our friend from Child Life had just gotten a message that someone donated some Rangers tickets. Guess what lucky kid gets to go to a Rangers game this weekend?

Yep.

We got some other "goodies" too. To quote a joke from a much earlier blog post I made, "You know you've been dealing with CF too long:  When your after clinic routine at home looks like a hazmat exercise." That one still makes me laugh.



The respiratory therapist gave us an Acapella today. We can attach a nebulizer cup to it so he can take his Albuterol while doing that.

Today, during clinic, I was asking the nurse where I can get more syringes for flushing his Mickey button. She said I can find them at the drug store. Azer quickly came up with something funny: "The drug store? Oh ... so I take drugs, hu? Lots and lots of drugs! I'm all drugged up!"

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.

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.

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.

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.

Blessings

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.

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.