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.

Internal ... Er .. Intestinal Problems

Well, it seems like for the past few weeks, Azer has been absorbing less and less ... and less. And pooing more and more ... and more. On Tuesday morning before school, he had a huge bowel movement (TMI but that's the way it is), and it was horrible and floating. I knew something was wrong. Same amount of enzymes, but I figured maybe I was just pushing the milkshakes too much. I have been adding heavy whipping cream to most of them just to try to get extra calories into the kid.

At school that day he ended up throwing up ... apparently it was a lot too. I rushed to school right away. He hasn't thrown up in about 3 years. When he got home from school, he pooed about 5 or 6 times. And each time, the whole toilet was full. I don't understand where it was all coming from. All the stools were floating and oily. I called the doctors, and felt like I was struggling to hear a response from them the next day. They are consulting with the GI doctor to see if she has some ideas. In the mean time, the doctor prescribed Flagyl for 14 days, three times a day. It is an antibiotic that treats the overgrowth of bacteria in the intestines (I think). I'm not really sure what else it does. Apparently, sometimes the good bacteria gets overtaken by another kind. So, I am hoping and praying that this actually was the problem. Please pray that it works, because we work so hard to get him to gain weight, and if he isn't absorbing anything, he might lose weight. And we don't want that to happen.

Anyhow ... another baseball game is scheduled for tomorrow night!

Mr. Baseball Jr.

Azer had his first actual game today. He was playing first baseman, and was tagging runners out, one right after another. He did so well, that the coach actually moved him to a different spot during the last inning, so the other team's kids could actually play!


So, today he was walking around like he was a big shot. We all know he is, but let's not blow him up to big now.
Well, I am not sure if he is gaining or not. I weighed him yesterday and today, and the scale said 43 lbs. I try to weigh him first thing in the morning after he uses the bathroom. He is still enjoying the Scandishakes. I've been leaning on them more instead of pushing him to eat a few more bites, as I figure he's taking in way more calories with the shakes, than in a few bites of food.
I keep trying to fool myself and say, well maybe he'll gain enough weight so we might not need the G-tube. The fact is, I have a feeling that it's just around the corner. And I don't know if I should just say, Yes, let's go ahead and do this, or if I should wait until it is actually medically necessary. Other parents and people say to me, "Well, he looks fine to me." And yes, he does look fine. His weight is "fine" at this point. I just want to be assured that I can keep his weight as high as possible, no matter what. I want his weight to be the best it can be, instead of just ok.

CF Clinic

Well, since we've been doing so many milkshakes a day, I was expecting to see a whole bunch of weight gain. He is 44 lbs, which is the same weight he was when he was discharged from the hospital last month. They are not sure exactly why he didn't gain anything, but the dietitian believes he may need an increase in enzymes, which we will do. The good news is he didn't loose any weight, and he is now about 50th percentile in weight, which is amazing. He has never been at that line before, so I guess we are doing something right!

Some great news ... he got a 98% FEV1 on his Pulmonary function test! That is the best he has ever gotten.

Azer has had a dry cough here and there lately. The respiratory therapist felt it might be from some post nasal drip going down his throat that might be causing some coughing. The doctor prescribed Augmentin for a couple weeks to see if that helps Azer's nose. They also sent us home with something called a NeilMed Sinus Rinse. They said to try it once or twice a day and see if it helps Azer and his sinuses.


We tried it when we got home. It was kind of interesting. I boiled some water (and let it cool) and then I put a salt packet into the bottle with the water, and then had him lean over the sink and squeezed the bottle. The water just went out the other nostril. We got some gunk out, and he said he felt clearer. I think we need to be more coordinated about it, because snot and water were blowing everywhere. Real lovely. But I don't think you want to see a picture of that.

Calming Waves

Some days are just so perfect. It was a warm and windy day, and the lake was making big waves that splashed on the kids.


Reema seemed to enjoy being calm near the waves...



Azer, on the other hand, was a hard person to catch in a photo.



He was constantly in motion. I didn't realize it until I looked at the pictures!

T-ball Preseason Game

Yesterday, Azer had his first preseason game. I don't think he slept that night, he was so excited! He got his baseball clothes all set out. He hasn't gotten his "official uniform" yet, which is why he is wearing the Texas Rangers. This year, it's the Angels. Azer wanted to go to field an hour before the game ... just to practice. The child has practiced every single day for the entire week.

The game went pretty well ... for 5-6 year olds. Azer did very well. Azer was playing 1st base. There was one great play during the game. Another boy at short stop caught the ball (without missing it!) and threw it to Azer on 1st base, who caught it (again, without missing it!) and tagged the batter out before he could get to base. That was the best moment out of the game!


I'm not sure if Azer is getting tired of drinking milkshakes, but they are still going down. Next week is another CF appointment. Hopefully the doctors will be happy with what they see, because we all have been working VERY hard!

Oh yes ... and both of the kiddos lost another tooth last night. On the same night! ... so it was Reema's 2nd, and Azer's 6th tooth. My poor, poor toothless children.

No Tobi

The doctor said, "No Tobi" ... for right now anyway. One of the nurses mentioned that the other medications that treat Pseudomonas also carry a risk of hearing loss as well. So, it seems the doctors are taking the "wait until it causes problems" approach. At least for now we don't have to wake up a full 30 minutes earlier. That Tobi really takes forever to run.

What else is new.... oh yeah.


Milkshakes, milkshakes, milkshakes, milkshakes...



Scandishakes, Scandishakes, Scandishakes, Scandishakes.



Seems like a lot to drink, but he says he's "cool" with it.

I'm "cool" with it too. He actually has a little bit of cheeks on his face. The last time I saw actual cheeks was...

Well, I just had to show that picture.

One more ... just because it's so stinkin' cute.