December 21, 2009

Ear Infection and Coughing


Azer came down with an ear infection last week. I think the attending pediatrician was trying to show a resident doctor what an ear infection looks like. He said, "This is a classic, perfect example of an ear infection" while looking in Azer's ears. I'm glad to provide teaching examples ... but Azer was so miserable all day. They took his oxygen saturation levels, and he was 92%, when he is usually about 98%. I was afraid they were going to admit him. Azer also had more mucus in his cough than it should have. They prescribed a 10 day course of antibiotics and Prednisone. The side effects of Prednisone are kind of frightening, especially the risk of infections.

A few days after the pediatirician visit, we had CF clinic visit as well. The doctor there seemed pleased with how Azer sounded and appeared. So, I suppose all is well for now.

Good news... both children have gotten half of the Swine Flu vaccination. The kids didn't seem to be as relieved about receiving them as I was. A few tears were shed ... I think the child screaming bloody murder in the next room made things more dramatic than they really were.

Another "wonderful" thing happened last week. Right around the time when the doctor gave the word to increase his treatments during the day, Azer's vest ... the machine that does CPT for me, gave out. I only had to live without it for a few days, but those days were very long and tiring. I don't know how I ever lived without it. Thank you Electromed!

I hope everyone has a healthy and safe holiday!

November 28, 2009

Looking Inside

Azer recently got a letter from a CF Organization that provides grants towards recreational activities. They had a set of questions that they sent along to be answered by the CF child. I think some of the questions applied to older children, but I asked him in a way he would understand.

Some of the questions were kind of touchy, such as, "Do you feel you are too thin, do you feel you are too short, do you feel you are physically different from others?" It gave me a look into how he feels about having CF, especially now that he is around other children his age, besides his sister.

He felt like he had to stop doing things he enjoys to do treatments, and he feels pressured at meals to eat.

He gave me an answer to one question that I did not expect. The question was if he enjoys eating. And he said no, not at all. He said he only enjoys the taste of food, but not the actual eating experience.




Another question was answered unexpectedly. The question was if he had trouble breathing. He said not usually, but he said he was worried about the cold weather coming. He said he has a difficult time breathing outside during cold weather, and that he was worried he wouldn't be able to run around with other kids during recess in the next few months.

While I am not one to let pity take over the situation, I feel a bit taken back by how he feels CF is affecting him.

If anyone is interested in applying for the recreational grant, it is called the Cystic Fibrosis Lifestyle Foundation. Their email address is: info@cflf.org
http://www.CFLF.org

November 12, 2009

Pledge of Allegiance

According to Azer:

I pledge Allegiance to the Flag,


of the United Steaks of America.

And to the public, which it stands



All Nations Under God



Invisible




With Liberty, Justice, for all.

Azer: "That means we all get the same stuff and we're all treated the same way."
Me: "Is that right?"
Azer: "Yeah, but I don't think Reema has got the idea yet. Look what she drew."
Me: "I think she's pretty close, though. Reema, is that what you think Liberty and Justice means? "
Reema: "Yep!"

The Happy Flag, by Reema

October 26, 2009

Sentences and Lice ... Yikes!

Our pediatrician and CF Clinic have not received their swine flu vaccines in yet. So, we're still waiting. I feel apprehensive about giving them the vaccine because of all the concerns of safety over them. I know I'll have a sense of peace after we get these vaccines over with.



Both of the children have begun writing sentences in school! It's very exciting seeing how far they have already come. They are reading small, short books as well.

And, finally: lice. I think Azer is the one who got them first, somehow, from somewhere. I don't know if I'll ever figure out the source, but I suspect it comes from school somewhere. I pulled quite a few bugs out of him, and only a few out of Reema. Just in case anybody wants to know, I used coconut oil. After leaving it on their heads for a few minutes, I brushed my hand through their hair, and found dead lice on my hand. That's how easy it was. Note that I did comb through tediously for a long time. And I am still combing through daily. It's been a week now, and I haven't found any lice, dead or alive (knock on wood). Dang bugs. I feel like a monkey combing and picking through their hair. Only I don't get to eat them.


October 6, 2009

6 Years Old!






Happy Birthday Azer!

Now We Are Six
Author: A.A. Milne
When I was one,
I had just begun.
When I was two,
I was nearly new.
When I was three,
I was hardly me.
When I was four,
I was not much more.
When I was five,
I was just alive.
But now I am six,
I'm as clever as clever.
So I think I'll be six
now and forever.

Forever is fine with me.

Here is the earliest pictures of both of the kiddos together.



September 27, 2009

*Cough*

It was bound to happen. Azer said about 4 of his classmates were absent from being sick, and two of them said they had the flu.



Reema came down with it first, feeling nauseous and feverish. She was out of school for a day, the next day she felt better, but come the weekend, they were both suffering from fevers, headaches, and just feeling overall miserable. If they fight and argue a lot feeling great, imagine how lovely they were to each other when they felt terrible? Felt like calling Dr. Phil.

To my relief, they both got their flu shots last week. Reema cried (screamed) like someone was coming in to kill her. She even cried the next morning worrying about any other shots that might be planned for the future. It's mildly humorous, but I'm not going to tell her that.

Azer seemed slightly dehydrated through the feverish weekend. He had no respiratory symptoms at the onset of this, but his cough started to get wet yesterday. The doctor prescribed a general antibiotic to offset any infection that might try to stick around in his lungs. I'll be sending Azer to school with a good supply of Gatorade (although I actually feel like going to school with him and doing treatments every half an hour, and pour Gatorade down his throat like there is no tomorrow).

I'm not worrying.

September 17, 2009

Another Clinic Visit & School Children!

Azer had a CF visit in the middle of a school day (that was fun.) Both Azer and Reema missed almost the whole day. I took Reema out of school expecting the hospital to have the flu shot in, but they hadn't received them yet. So ... no flu shots yet. We are scheduled to get them next week. I've been nervous about the flu and the swine flu scares, especially now that they are in school. Obviously I can't keep Azer in a bubble. I don't think he'd like that. He doesn't look like the "live in a bubble" type child... right?




On the news there is a story about a girl somewhere in North Texas that died from the swine flu within a few days. That is very frightening.

Anyway ... the updates of Azer: His lungs are the same, clear and pretty much healthy. His weight, they say he didn't gain any. I didn't get my usual print out of his weight and height, as the whole clinic was in a chaos putting medical records into a new computer system.

School has been going well for them. Everyday they come home with new knowledge, and I am impressed with how much they have learned in less than month. Kindergarten is very intense, though. They are learning so many things, even so early on in the year, that I didn't learn until second grade, if that. It's both amazing and shocking, in my opinion.

August 24, 2009

First Day of School

Today marks one of the giant milestones in my kids', and my life.

The day went off without a hitch. They seemed to automatically know what to do. They got on the school bus without a hint of fear or apprehension. I met them at school a few minutes later, and they seemed to be much more occupied with their pencils, and "projects" and the fact that I was standing there saying goodbye. While it is difficult to "let them go", I'm proud to see that they were so well prepared for that day, that they didn't feel nervous about facing new challenges.




Still, after being with them almost every single day ever since they were born, I really do miss them. It's a good thing to have them back at home at the end of the day.

August 22, 2009

Happy Birthday Reema!





It's those odd few months in my life, where both of my children are the same age. I have two five year olds right now.

Happy Birthday Princess!

June 16, 2009

Allergies

Azer has been having a lot of trouble with allergies lately. That's what I assume they have been. There has been no fever, or symptoms other than having a stuffy nose. One day, it was so bad, it sounded like his nose was totally clogged up when he spoke. He takes Zyrtec on a regular basis to keep the symptoms from coming, but it hasn't been working. So, the doctor prescribed an allergy nasal spray. Yay! A new medicine to add to the list. Ha! But seriously, it does seem to be helping.


At clinic day, Azer was giving the nurse an earful about cars. And he began to tell her what he considers "cool" cars... Chevy Silverados, Hummers, Corvettes .... So the nurse mentioned that she owned a Ford. If only I had a video camera recording at that moment. His smirk and stiffled laugh was hilarious. Apperently from that reaction, a Ford is not on his "cool car" list. Maybe he'll come around when he notices a few Mustangs.

June 11, 2009

Great Clinic Day

So, Azer gained another pound and he grew a bit too. He's finally made it over 40 pounds. Wow! He weighs twice as much as the cat now. His eating has been coming along. The doctors always ask, "How's his appetite?" I explained it like this, "It's like eye floaters ... you think you see it, but you can't quite capture it, and keep it." Overall, the doctor was very pleased. Azer did very well on his PFT (Pulmonary Function Test) today and we finally got an accurate reading.

He learned to swim last summer, he needed a little refreshing. Now, both Azer and Reema are swimming like little whales in the pool.



He joined T-ball last month, and has been doing very well. He is keeping up with the other kids better than I expected. (Honestly, half of the team is either playing in dirt in left field, or looking at the sky). He is very focused.


Along with running bases, he guzzles the Gatorade like ... water. I think it's because of his need for sodium after sweating. Around the border of his baseball cap is a white border of salt. It's kind of neat to see that.

March 27, 2009

Great Strides Day!

We have raised a total of $202 for the CF Foundation! Thank you to everyone who has donated! You are making this possible for Azer!
We hope to raise more money at the walk. We're pretty excited! I'm glad Azer will get to meet other kids with CF. That way, he doesn't feel like he is the only one in the world with CF.

Again, thank you to everyone for helping make Azer's life and the life of other CF people better! Pray for a cure!

March 14, 2009

Good Clinic Day


Azer gained some weight since the last clinic visit. At least he's not loosing. His X-ray looked great, no changes or progression. Azer's appetite has been nearly non-existent for the past few weeks, but somehow all his nutritional levels from the blood test turned out normal. Whatever little bits he is getting here and there somehow keep him going.

His pitching has been right on target, lately. He can knock a bottle off a target from about 25 feet away. It's pretty cool. T-ball registration will start very soon, and I think he will be going this year. Azer is very excited about it.

Our walk is coming up the week after next! I hope we can raise just a bit more money!

February 16, 2009

Great Strides


This is going to be the first year we actually walk in a Great Strides walk. In the past, we have only raised money.

The walk is at the 2009 Keller/Southlake/Grapevine - Bear Creek Park walk on 03/27/2009.

We just receiving our first donation today!! Thank you!

Received $7.

I am asking that people donate only $1. It really does go a long way. Thanks everybody!

http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=5891&idUser=83899

Feel free to forward that link to anyone you know!