No to Pseudo

The nurse called yesterday to let me know what had shown up on the throat culture from last week. There was no Pseudomonas on it, or MRSA. Just Staph. She said just because that it didn't show up on the culture doesn't mean that it doesn't exist in his lungs anymore. That some of the bacteria can be deeper in the lungs. But, they don't really treat it unless he is having symptoms.

Azer was coughing a lot yesterday for some reason. Not a wet cough, just a dry, hacking type of cough. I haven't really heard him cough today since he's been home from school, so I'm not sure why that happened.

The kids had fun today playing at the park until late into the evening. Azer was tired by the time he was done with dinner. He asked me if he really had to do his evening breathing treatments. I told him if we don't keep his lungs healthy now, they might not be healthy for very long. I hate to be blunt with him, but sometimes I don't know any other way to put it.

He still is not eating a whole lot of food, but is still drinking his milkshakes. I keep thinking about how he is 47% in BMI and how amazing that number is. I just want so badly to keep it that way.

More Needs to be Done

So, the walk was on Friday. People we knew weren't able to to make it. Friday evening is a busy time for people I guess. But we did raise over $200. Thanks for donating. You all are awesome.

The walk was 4 miles, but most people there only did about 1 or 2. But the kids and I completed the four mile walk.

And they still had a ton of energy at the end too. They even ran for some of it.

The next walk is in June, but it is at 8am, and it's on a Sunday. I'm not sure if people are willing to wake up early just to get over to Arlington to walk.

I am going to start making t-shirts, either to try to get a "team" together for the next walk, or just for people to wear to spread awareness about CF. I'm not sure how much to ask for them, or if I even should, but I think I need to be more of a sales person about raising money for CF.

If anyone has ideas, let me know. I'm open to suggestions.

Great Strides Walk

Well, tomorrow will be our second try at a CF walk. Last year it was canceled because of cold weather. We are supposed to have thunderstorms tomorrow, some of them possibly severe. I am hoping that doesn't happen.

Well, if you can donate $1 towards the walk (rain or shine), that would be greatly appreciated. I know everyone is having a hard time this year. If you can't donate anything, leave a comment! Thanks!

Feelin' Good

Azer had a CF clinic today. He gained a pound. He is officially over the 20 kilos mark.

He has not been eating very much, but he has been having no trouble with his milkshakes. The milkshakes apparently are working very well (as long as they don't have heavy whipping cream in them). His stools have been looking nearly normal, which is pretty much the first time in his life when he has been absorbing this well. The Scandishakes seem to be incredibly easy for his body to absorb, as long as ol' mom here doesn't try to put anymore whipping cream in anything. You think you're doing good by your child, and then ... guess what, you were trying a little bit to hard. Azer ate Pasta Alfredo the other night. When I say that he ate it, I mean he had a few bites ... like around a fourth of a cup of it. Within an hour, he was in the bathroom. I soon found out that they make it with heavy whipping cream. (Can you tell, I don't cook much? Apparently a lot of people already knew that).
His PFT (Pulminary Function Test) was only 85% FEV1 today. However, for some reason he kept coughing during the test. It made the doctor think that he was getting sick, but I tried to tell them that this was the first time he has coughed like that in about two months. They did a throat culture to test for Pseudomonas again. If it comes back positive, the doc wants us to try Cayston, which is a new inhaled antibiotic that works like Tobi does, but it is a different class of medication in that it isn't supposed to have any hearing loss risks.
Azer has had no paleness within the past few months. Usually, if he is eating poorly, he tends to get ghostly white, but his color has been excellent. And his energy is fantastic. It makes tagging people out at first base easier. He is loving that position. Someone asked him today if he would be a pitcher when he grew up, seeing that he was left handed. Azer said, "No! I want to stay at first base ... forever."

Look!

He can breathe!

Yeah ... well, like I said before, it seems like the horrible headaches Azer was getting was from his sinuses. Yesterday evening, he had a really bad headache .. he looked just plain miserable. So I asked him if he wanted me to try to flush his sinuses again, so we gave it a second try for the day. Some gunk came out, but it wasn't a whole lot. The amazing thing is, right after we were done, the headache was completely gone.


And he was back to his normal, usual self again.

Bleh

Well, I've been having lunch with Azer lately at school, to see if I can get him to eat more. Monday, I was feeling sucessful about things. He ate a half a sandwich and his milkshake. He was getting started on M&M's when he started to make a weird face ... and bleh ... he threw up right there.

So, I took him home, called the CF doctors and the pediatrician, and the pediatrician gave me an appointment for that day. After they looked at him, they called the CF doctor. The only thing they told me was, "Well, just keep giving him the Flagyl and if there are any changes, please give us a call". Yeah ... it's that anonymous answer they love to give. "Give us a call". Funny.

The CF nurse called me the next day and said that if things hadn't gotten better by Thursday, to make an appointment with the CF GI doctor. So, it looks like I might even get to drive there again! Twice this week!

Sarcasm .. it isn't one of my strongest skills.

Do you all like the new pictures?

Headaches

Azer has been having headaches for the past couple weeks. I haven't realized it as he hasn't really said much about it. On Friday, he said it felt like someone was punching him in the middle of his forehead. It turns out they have been from his sinuses. I've still been doing the nasal flush everyday. So, now I'm giving him some over the counter sinus medication. He hasn't mentioned much about headaches so far, so I'm hoping this will do the trick!

Yesterday, I took the kids to a Easter celebration in Fort Worth.

They got to get up close and personal with some Long-Horn Cattle.

That's Easter Texas style!
Reema said the bull's tongue (I think it was actually a steer) was very yucky! Actually it was kind of rough like a cat's tongue. They seemed gentle, but I wouldn't want to be on the other side of the fence. The kids were giving me all these facts about Long-Horns that they learned in school. Didn't even need a tour guide.

Another post about poo

You know .. I should just put a big red banner above the blog that says, "Warning ... the following blog goes into detail describing bowel movements. Proceed with caution."

Alrighty ... well, it looks like stopping the heavy whipping cream and the Flagyl are working out wonderfully. He is back to only pooing once a day, and the stools are looking more formed, and less "floaty". His stomach is looking less bloated. It seems he is maintaining the weight he has so far.

Last night, his team won the game! They had extended the game because it was at a tie. Azer was up to bat last, we had two kids on base. Azer hit a double, so we got the two extra runs we needed.

Alright All-Star boy, you're starting to impress me now.