A little bit of normalcy

On Wednesday evening, Katie's temperature spiked to 102. Since the weekend was coming and she was getting a little worse everyday, I took her to the doctor. Her pediatrican and I discussed the treatment plan the CF Clinic put Katie on for the CRMS. Then Dr. B checked her out. Her ear was full of fluid, but her lungs were clear. Dr. B decided to run a couple more tests. Turns out Katie has Flu A, Flu B, and an ear infection.



The funny thing is, we were actually happy that it is the flu. Katie's treatment plan is working!!! She isn't getting the sinus infections and pneumonia she was frequently getting prior to the most recent treatment plan. One of Katie's tubes has come out of her ear, this is the one that is infected :( But, it is great that Katie has a bit of normal in her life. This illness is not a result of her CRMS!!!!!



Katie has also gained 6 pounds in the last 4 months. This is fantastic!!! She was stuck at 40 pounds for the longest time and is now at 46 :) She also looks so much better! Dr. B was so excited about how great Katie looked (and this is with having 2 flu's). It's fantastic that she looks so much better now being sick that she did before! We are so happy to see the constant circles gone from under her eyes and some color back in her face.

As for the flu's, she is up and down. One minute she is up playing with her toys or coloring and the next she is laying on the couch watching tv. Right now we are watching Bambi :)

Katie has a little bit of normal back in her life :) And we are thankful for it!



Andy is counting down the days until his cast comes off. 4 more days!!! He can't wait. I don't think he completely understands that he will still have the same restrictions as he did with the cast on. But, he will be able to take a regular shower again!!!! And he will be able to bend his wrist......I am afraid this is going to hurt. It has been in the same posistion for 5 weeks! But, I am happy for him that he will be getting it off. 4 more weeks of restrictions and he will be good to go right before his 12th birthday.

What is Family?

A friend of mine recently asked the question: What is family? My answer to her was "a group of people held together by bonds of love and affection." However, I think there are many answers to this question.

There is the obvious, the family you were born into. There is Mom, Dad, siblings, aunts, uncles, cousins, etc.... We don't get to choose these people, they have been given to us by God (as stated by another friend of mine).

Then there is the family we build. The spouse we choose and the children we create. Blessings given by God.

Then there are the in laws. The family you marry into, given to us by God as well. There are also the in laws that marry into your family.

I also believe there is the family you create. Your close friends. Those that you have formed "bonds of love and affection" with. That small group of people you trust completely.
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As children growing up, our only thought of family is our Mom, Dad, Brothers and Sisters. It is what we know. If you are fortunate enough to live close to Aunts, Uncles, and Cousins then they will come to mind too. We rely on these people for everything and trust them implicitly while loving them unconditionally. I remember fighting with my brother all the time when we were kids. And some of our arguments even drew blood! But, no matter what I always trusted my brother. Even when he drew blood, it was accidental. He would never hurt me on purpose. My sister is 8 years younger than me. I remember her following me around and trying to embarrass me with crazy hair, or dressing identical to me. Turns out, we just happen to have a very similar sense of style. But, back then it drove me insane. As we have gotten older, we have gotten closer. 8 years isn't much of a difference anymore. I trust her implicitly, with my life and all of my secrets :) My parents have always been there for me. No matter what, even when they have disagreed with my choices. Unconditional love. The first family God gave to me.

Next comes the family we create for ourselves. The spouse we fall madly, deeply in love with. And the children created from that love. This becomes the first thing you think of when you hear the word family. A family created in love, unconditional love. I was lucky enough to meet my husband 13 years ago. We have been through a lot, and continue to grow closer and closer as the years go on. I can't imagine my world without him in it! We were blessed with two children. Two children whom we adore, and are so grateful to have the privilege of raising.

Of course, with the spouse comes their family. Through the bonds of matrimony, they become our family. My husband has a large family, a family that is very close. Growing up, I didn't have any cousins around to play with. We lived in Texas, and most of my cousins lived in Arizona. (And i have a lot of cousins :) Mom comes from a large family as well.) I remember going to visit a few times, and longing to have them closer by. I haven't seen my cousins in around 15 years. But, thanks to modern technology, I can now talk with them on a daily basis. My children are fortunate enough to have their many Aunts, Uncles, and Cousins from both sides of the family nearby. There are always ups and downs with a large family. But, I consider us blessed to have so many people in our lives that care about us and love us unconditionally.

Then there is the family we create, and there may be more than one. I am fortunate enough to have a couple of wonderful ladies that I consider my family. Friends who know all there is to know about me, the good and the bad. Friends I trust implicitly. Friends who I may not see or talk to everyday, but are always there for me. These ladies are my family "through bonds of love and affection."

There is also the family created around a common interest. I have my dojo family. These are the friends I have met through taking Martial Arts classes. These are the friends who encourage one another every step of the way, who never judge, and care about each other as individuals as well as classmates. I am still getting to know many of the people at the dojo, but I love every one of them. I went into my very first class feeling awkward and embarrassed. I left that very same class feeling encouraged and supported. And continue to feel that way today.

(If you are ever interested in Martial Arts classes in the Frisco area, I highly recommend Premier Martial Arts - Frisco/Little Elm)

There are many definitions to the word family. We can't always choose them, we don't always get along with them, but they are always around. I do believe that in order to be family, there has to be a mutual "bond of love and affection." There are many forms of love. The love I have for my sister is different from the love I have for my husband which is different from the love I have for my friends.

I consider myself extremely blessed. I hope you do too!

Quitting

Quit:

–verb (used with object)

1. to stop, cease, or discontinue

2. to depart from; leave (a place or person)

3. to give up or resign; let go; relinquish

4. to release one's hold of (something grasped).

5. to acquit or conduct (oneself).

6. to free or rid (oneself): to quit oneself of doubts.

7. to clear (a debt); repay.

(from Dictionary.com)

As children, our parents teach us not to quit. Quitters never win, winners never quit. As parents, we pass this down to our children.

On January 3, 2011 I quit. I am a quitter. And I am very proud to say that.

For almost 20 years, I was a smoker. It started out in my early teens with a cigarette here and there. But, it didn't take long for it to become a pack a day habit. I enjoyed smoking. Stuck in traffic, smoke a cigarette. Frustrated at work, smoke a cigarette. I would sit around in the garage talking with my friends and smoke one after another. At other times, I would sit in the garage with a good book. It was peaceful and quiet in the garage. I would lose track of time and the number of cigarettes I had smoked.

If I went too long between cigarettes I was grumpy. I needed a cigarette. I could associate smoking with every emotion. Angry, smoke a cigarette to calm down. Sad, smoke a cigarette to feel better. Happy, smoke a cigarette to celebrate. And on and on it went. I was a slave to smoking.

In April of 2010, I began taking Martial Arts classes at the studio my children attend. I went from the couch to the dojo. The first few classes were brutal. Did I mention that I have asthma? An asthmatic smoker, running laps and doing jumping jacks. It was not a pretty sight! I couldn't breathe, I didn't think I could make it. I stuck with those classes. I was taught how to breathe properly and how to put my hands above my head to try and help open up my lungs. It was still torture! As the months went by, the instructors constantly told me I needed to quit smoking. They were very encouraging, and firm.

Throughout 2010, my daughter was sick. It started out as constant ear infections/sinus infections. She had her adenoids and tonsils taken out and the infections continued. You can read previous posts to learn about all the testing that she went through. Throughout all this, I learned about a disease called cystic fibrosis. When she was sent for her first test, I didn't even know what it was. I have learned a lot this year. Katie does not have cystic fibrosis. She has a milder syndrome based on the disease. But, as I was learning about this disease I learned that there are people in this world who pray for healthy lungs to be transplanted into their bodies. And here I have a perfectly good set of lungs that I was destroying, and enjoying it. And then I began to think about what I was doing to my daughter's health. I always went outside to smoke, but it still lingered on my clothes when I went in. Was this causing her harm? Yes. Then she started to mimic me. She would put a pencil to her lips and pretend it was a cigarette. It broke my heart.

At the end of 2010, I got sick. No big deal. I got bronchitis and/or pneumonia every year. I accepted it as something that just happened. This year, I decided to ditch CareNow and find a family care doctor. I did, and was told my lungs were not in good shape. I was wheezing. After several rounds of meds, I was still wheezing. It was time to quit. I had tried to quit smoking several times over that last few years. I tried the patch and the gum. But, I never succeeded. I don't think I was ready. I enjoyed smoking.

I asked for Chantix. The quit smoking drug. I was wary, there were several negative side effects. But, in my mind, this was my last resort. Or maybe I was finally ready. Maybe I didn't enjoy smoking anymore. I was at a point in my life when I was thinking about how I want to be around when my children grow up and have families of their own. I was thinking about the example i was setting for my children. I was thinking about the damage I was doing to their health. I was really thinking about all the things we are taught about smoking. As a smoker, I ignored those things. They weren't going to happen to me. When I was in my early 20's I had a doctor tell me that there were two types of people in this world. People with the lungs to smoke, and people without the lungs to smoke. I didn't have the lungs to smoke. I was damaging my lungs. The doctor told me I would be dead by 40 if I didn't quit smoking. I blew her off. But, the closer I get to 40, the more I think about her words. I just hope it's not too late.

I was successful with the Chantix. I haven't had a cigarette in 2 months. I consider myself a non-smoker. I smell better. I no longer spend half of my evening in the garage, I spend it with my family. My lungs and body are healing. I still take Martial Arts classes and they are getting better. I got my Gold belt last month :) It's a slow process, I have 20 years of damage to repair.

I didn't do this by myself. It took a village. I couldn't ask for a better support network. Thank you to all my friends (old and new) who have been there in the last two months, and who have shared encouraging words. It made a difference in my life.

Keeping Healthy

At Katie's last CF clinic, it was decided that she would be on antibiotics for the entire winter season. A small daily dose. The hope was that this would keep the bacteria at bay and prevent the pneumonia she was suddenly frequently getting. I was also given a prescription of oral steroids to have on hand. When we hear the barking cough, we immediately begin steroids. We have had to do this several times, but each time it has worked! By the second day, the cough was much better and we were able to avoid pneumonia.

Sunday morning, Katie woke up with that horrible barking cough. Immediately she began breathing treatments every 4 hours and oral steroids twice a day. Today is day 2. Historically, the cough is much better by the second day. This morning it was not :( She will continue the treatment plan she is currently on. Praying that she is better in just a couple of days.

As parents, we all do our best to keep our children safe, protected, and healthy. Chronic illness makes that so difficult. Katie is sick at least once a month. Usually it is only minor, not worth mentioning now that we have a great treatment plan. But, every now and then it gets the best of her. The severe allergies aggravate the severe asthma. The CFTR-related metabollic syndrome amplifies it all. And we end up with a round of new meds. Getting back to healthy as quick as we can.

It has been almost a year since Katie was admitted to the hospital. At that time, we had no idea what was going on in her poor little body. Today, we know. Today, we do what we can to keep her healthy. It takes a village and a ridiculous amount of meds. We are usually successful.

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A month ago, our family had a round of martial arts belt tests. Katie tested for her purple belt and received it. I tested for my gold belt and received it. Andy tested for his blue belt/black stripe. Andy's test began at 1pm. At 1:30, he was sparring and blocked a kick that came in a little too hard. He was down on the mats. His cry was one of pain. His arm hurt, it was swollen. Andy was given the option to bow out of his test. He wanted his belt badly. He chose to tough it out. He was given some pain meds and an ice pack. Then back to the test he went, another two hours. Andy got his belt!!!

We went home that afternoon, wrapped his hand up and kept ice on it all afternoon. It hurt. The next day, we went to see the Orthopedic surgeon. Andy's arm was fractured. He did 2 hours of his belt test (including grappling) with a fractured arm!!!! He was super excited to get a cast on. That was 4 weeks ago. Now, he can't wait until he gets it off.
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Cystic Fibrosis: CFTR related metabolic syndrome & pneumonia

Just a year ago, i couldn't have even told you what cystic fibrosis was. In fact, when we were sent for Katie's first sweat test, I asked the doctor that very question. What is cystic fibrosis? Fortunately, Katie does not have CF. However, what she does have (CFTR-related metabolic syndrome) is a fairly new diagnosis. Not a whole lot is known about it. Basically, Katie has a lot of the symptoms of cystic fibrosis, but none of the bad parts of CF. But it is frustrating, trying to determine her treatment plan.

Katie's last clinic visit was at the beginning of the month. It went well :) Her test results for pancreatic sufficiency came back and Katie is no longer on enzymes. She is pancreatic sufficient! Yay! I discussed with the doctor about her ENT considering sinus surgery in the next 12-18 months. They agreed with me, that is should only be done if 100% necessary. I really don't want to start her on sinus surgeries at the age of 4! The only concern with Katie is that her weight isn't keeping up with her height, her BMI keeps decreasing. So, we are adding extra calories to her daily diet. She has also begun taking vitamins. So, it was a great visit! Our next clinic appointment is at the end of December.

This past Friday, Katie started getting congested and sneezed all day long! Her allergies were coming to life! On Saturday, she woke up with a barking cough :( I immediately put her on Xopenex every 4 hours. Sunday she woke up with a fever of 102. She was absolutely miserable. By the end of the day, I couldn't get her breathing completely controlled. It was a horrible night. I knew I should have taken her to the ER, but I was trying my best to keep her as controlled as I could at home to avoid the traumatic experience of a hospital stay. Monday morning I called the doctor's office as soon as they opened and got her an appointment with her pediatrician. The doctor confirmed that yes, I should have taken Katie to the ER the previous night. Next time, I won't hesitate. The dr did a CBC, and her white count was really high. So between that and the crackles in her lungs, we were sent for another xray. Sure enough, positive confirmation of pneumonia. Before we left the office, Katie was given a shot of a heavy dose of antibiotics and a prescription for oral antibiotics. After picking up her meds, we went home to snuggle and rest on the couch with the Disney channel.

This is the second time in three months that Katie has gotten pneumonia. And both times, it happened quickly. Allergy problems first, then the barking cough, and a fever on the third day. I called the CF clinic and left a message. Katie has had the pneumonia vaccine. I am hoping we can come up with a treatment plan to help prevent her from getting pneumonia frequently (and so quickly). Katie's pediatrician quickly taught me airway clearance to help get the gunk out of her lungs. I am supposed to ask the CF clinic to give me full instructions on airway clearance. So, it seems this has been added to her treatment plan.

Katie is doing much better today. The shot she got yesterday seems to have really helped! She is still on breathing treatments every 4 hours. We go back to the doctor tomorrow to see how her lungs are doing. Hopefully, much much better!

Icky!

This post is not for those with weak tummies (like me)........

At Katie's last clinic visit, it was decided to go ahead and run the tests for pancreatic sufficiency. In order for this to happen, I had to collect a sample of Katie's poop. The doctor gave me a "bucket" for her to poop in, a tongue depresser to scoop up the poop, and a container to put it in. We were all set! That was in July. Katie is ALWAYS constipated, and spends her days at daycare. Therefore, collecting her poop was not an easy task.

However, after much bribery (from multiple parties), Katie finally pooped in the bucket at home. Thankfully, she did it this morning rather than last night. See, the poop has to be refrigerated and kept cold until it reaches the lab. I did NOT want my daughter's poop in my fridge. Thank you Katie for pooping in the morning! As I step out of the shower this morning, Katie is at the door excitedly telling me that she has pooped in the bucket for me...."I finally did it Mom!" So, I gather the tongue depressor and container (very unenthusiastically.....why couldn't Jason be home for this part?!?!?!) and make my way to gather her offering. (Now, for those who don't know me, I don't do well with bodily waste. Mucus, vomit, poop....they all make me gag and vomit. When my kids throw up, I throw up. It's just a fact of life.)

Katie is standing in the doorway as I am gagging and scooping up poop with a tongue depressor. Suddenly, she takes off running and then Andy is hollering for me to hurry. Who would have guessed that Katie would have her Mommy's weak tummy. My tough, fearless, eat anything, plays with bugs daughter took off running for the other bathroom to throw up. Unfortunately, she didn't make it and it landed on my bedroom carpet. Luckily, she had not yet eaten breakfast. I had to collect poop and clean up vomit all before 8am!!!! What a way to start the day!

I will get to finish my day trying to get the stain of blue juice out of my carpet :(

Katie's hearing test

Thursday Sept 9th, Katie went to the ENT for a hearing test. Great news!!!!! Her hearing is perfectly normal. It was such a relief to hear that. She has had so many ear infections, that we were worried. She also talks very very loudly, and tends to not hear us when we talk to her. But, basically, she is just a loud mouth with selective hearing. LOL! Which is wonderful! The day after the ENT, she woke up with a horrible barking cough. She began breathing treatments immediately and was better by the next day.

This past Saturday was the first FFL football game of the season. Andy did fantastic on the field. Katie wore her cheerleader uniform, but wasn't really into cheering this time around. She can usually be found on the bottom of the stands right in front of the actual cheerleaders. She brought her pom poms but stayed close to us. The boys won the game 30-0. Hopefully this is an indicator to a fantastic season! This is the last year of FFL, then they boys have to play for the school they attend. Andy is a little nervous about that.

On Friday, Andy got his trombone in band. He is so excited about it. He pulled it out several times over the weekend to play for us. He needs lots of practice, but I have no doubt he will be an excellent player by the end of the year :)

On Saturday, Katie went to her friend Will's house to play. I dropped her off and then Andy and I headed home. (Jay was at the deer lease) This is the first time Katie has ever gone to a friend's house without me. She had a great time, but she did miss her Mommy! After an hour and a half of fun, I went and picked her up.

As some people know, the company I currently work for is in liquidation. I have been looking for jobs over the last couple of months. I had 3 interviews with one company in the last two weeks and 1 interview with another company. Got the news today that I didn't get the first one. It was a bit of a drive. The pay was going to have to be pretty good for me to take it, and I wasn't sure if it would be there or not. But, I didn't get it. Still waiting to hear back from the other company. Job searching in today's economy is not an easy task!