One face in 30,000 with CF

One face in 30,000 with CF
One of the many faces of Cystic Fibrosis

Monday, January 31, 2011

Terrible Two Tales

Zoey and I were playing with her farm set on Saturday. I was showing her the different animals and telling her the names and what they said. The only thing that stuck with her was moo. I say Zoey what does a cow say.. "moo ah oh" Zoey, what does a dog say "moo ah oh". I have no idea where the ah oh came from but it is darn cute.

Anxiety

I have recently joined a CF moms group on face book. I have come to the conclusion I should stop reading posts for a little while. The group is wonderful and I learn a lot but my heart cannot take it right now. I think it started when Randy got terminated from his job. I am anxious all of the time. How are we going to get Zoey the medications she needs on just my salary. Then I go and read posts on the moms group and I hear this kid is going through this and that, and this 9 year old lost his battle and so on. I realize when you open up to others in the CF community you have to take the good with the bad. Some kids do well and others not so well. That is just the way it is, but I would take all of the new friendships being started with the bad any day, because you don't feel like you are the strange one, your kid is "normal" and non CF kids are the "strange" ones. However the last few nights I have sat up crying over what could happen. And overwhelmed with guilt over what my daughter is going through because of something I unknowingly gave her. Even now I am sitting at work with knots in my stomach just wanting to go home and be with her because of what she may or may not go through. I can't stop shaking or crying, I am just feeling sick. Now I am sure this is just good old fashioned anxiety issues triggered by the loss of my husbands job. I think I am going to have to lay off of the CF moms group for awhile until I get my head straight. Or even just stop reading things and just go in there every once in awhile to ask questions, get my answer, then leave. The thing is, my daughter is doing wonderfully well, and I know with this monster that can change with one cold virus but why can I not just be okay with the good right now? I am working on taking everything one day at a time, I think at this moment I need to take it one minute at a time.

Thursday, January 27, 2011

You know you are a little bit OCD when....

Your daughter who is not even two stops to sanitize her hands in the hospital at every place they have it, probably every 4 feet. Her hands were very clean yesterday.

Wednesday, January 26, 2011

When do we get a break?

I wonder sometimes if my husband and I will ever catch a break. Randy got terminated from his job. I will not go into detail but in my opinion it was a wrongful termination. They wrote a letter and the main thing was that he never answered his calls while he was on call. I am his wife I can vouch that he did. In fact the last time he was on call he worked the entire weekend. What really happened is the boss found someone he liked better but he could not hire him until Randy quit. He was verbally abusive to him and did everything he could to get him to quit. The thing is Randy was trying to get out of that situation but his family means more to him than the abuse he suffered. Randy was not going to leave his job until he found another one. He wanted us to be financially stable for Zoey, her medications are very expensive even with insurance, the co pays and the other 20% not covered with hospital bills and xrays and cultures and my MRI's and my IV's off and on, it is just to much. However, no one looks at that, when we call special health care places and so on we do not qualify for help because we only have one child and our income is over the limit. They don't look at the fact that there are two chronic illnesses in the family. I just wonder if we will ever catch a break? We have only been married a little over a year and we have had enough happen for 2 lifetimes in my opinion. Our daughter is born with CF and my post par-tum depression and then the MS flare up that caused me to have 4 IV's last year, and these are not IV's that make a person feel better, they are strong drugs and they knock you on your ass for about a month after you are done with them. Zoey has been in the hospital 3 times and now this. Randy does not deserve this. He deserves a job he loves, and he does not deserve verbal abuse. When he married me he knew about my MS, in fact I was having a flare up on our first date and we could not do anything but watch a movie. He still married me. He moved out of a big city to a town he hates to be with me, and took this job 3 years ago, where he endured 3 years of verbal abuse for his family. Now we have to struggle with how we are going to pay for Zoey's medication. The positive thing in all of this is that he is finally getting away from his boss, and being on call every other weekend and now Zoey will be home with him and out of daycare during flu and cold season which is awesome. Plus Zoey loves her dad and she is going to love being home with him. I am going to love sleeping in a little more and not worry about treatments and getting Zoey to daycare before work. However, Randy is not the stay home type so we need positive energy sent our way that he will find a good job that he loves to go too.

Monday, January 24, 2011

Daddy's Girl

I know I have been MIA. It is that nothing much is going on....really. Just work and treatments and then we get up and start over again the next day. We stopped our second round of TOBI on Friday, so 28 days of freedom then we go again. We go to clinic on Wed for another culture and we see an allergist.

Sunday I made a big discovery. Zoey has her dad wrapped around her little finger. We went shopping at Wal-Mart, the only place next to Smiths that we have for grocery shopping. We took a trip to the toy section because I wanted to get Zoey some play dough, she has stopped eating everything so I figured now was a good time to get it for her. We left the toy department with play dough, a ball, a Tinkerbell costume, and..... Tinkerbell sunglasses. Hmmm was that Mommy? I think not. I got play dough for her, Zoey did not even ask for any toys. Dad kept disappearing around the corner and coming back with more and more and more stuff. Daddy does not realize he cannot show it to Zoey unless he is willing on getting it for Zoey. He tried to put the ball back and she screamed bloody murder. I said Randy, you cannot give it to her and then take it away from her it is not fair. So she got everything. LOL, I love my family.

Here are Daddy and Zoey pictures, one is with the new ball and the new sunglasses, one is of them taking a nap together.


 

Friday, January 21, 2011

Donate to CF Foundation or Join a Team

Hi friend:

Cystic fibrosis is the most prevalent genetic disease in the United States. Advances continue to be made in finding a cure, but your help is needed now - more than ever - to help keep up the momentum of this life-saving research. Too many young lives depend on this vital research to let it go unfunded!
GREAT STRIDES is the Cystic Fibrosis (CF) Foundation's largest and most successful national fundraising event. This year, I'm walking in the GREAT STRIDES event at the 2011 Salt Lake City - The Gallivan Center, 239 S. Main St., Salt Lake City, UT site on 05/21/2011. Please help me meet my fundraising goal of $150.00 by sponsoring me. You'll feel confident in knowing that your generous gift is used efficiently and effectively: nearly 90 cents out of every dollar you contribute goes directly toward supporting research and specialized care that improves the quality of life for those with CF. And, it's tax-deductible.
Making a donation is easy and secure! Just click on the link below to make a donation to my fundraising page. Any amount you can donate is greatly appreciated!
Donating to GREAT STRIDES is such a simple and effective way for you to show your support for this important cause. Together, we can make a difference in the lives of those with CF! Once again, thank you for supporting the mission of the CF Foundation!

If you encounter a problem with a link, please visit my GREAT STRIDES Home Page at http://www.cff.org/Great_Strides/KortneyClark! NOTE: If link looks broken, cut and paste ENTIRE link into address bar. If you are presented with a "Find A Walker" page, enter my first and last name and click on "Find Walker." Then click "View Walker" by my name in the results list to go to "My GREAT STRIDES Home Page."

Thank you,
Kortney Clark

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Thursday, January 20, 2011

Groettum Family: The Chosen Mothers

Groettum Family: The Chosen Mothers: "The Chosen Mothers by Erma Bombeck Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit...."

Possible MS cure one day.

http://www.news24.com/SciTech/News/Possible-MS-cure-found-20101206


Well I wish this was a possible CF cure but if they can fix MS they should be able to fix CF

Wednesday, January 19, 2011

How about I charge you insurance company?

My family and I are very lucky, we are covered by insurance. I know how lucky we are, however, they waste more of my time in a day than any other part of my day. I think their motto is deny everything and save money for as long as we can. Keep it if the person does not fight them. They deny everything it seems like. They deny prescription meds and say I have to take a new brand that has a generic component to it. Then I have to wait for my doctor to either rewrite a prescription for something else or call the insurance company and tell them why I need it. I am in that situation right now except there is no other med. They have denied my MS meds until the doctor calls and tells them why I need it. Hmmm it is an MS med would that not mean it is for MS? Let me think? And really???? It is between me and my doctor why I need these things, why does some flunky sitting behind a desk get to deny me medication I need. I doubt they even have a medical license. Blah blah blah. And.... every 6 months or so Zoey is denied her feeding tube stuff and then I have to make phone calls, find out what is going on, call the doctor, get them to write letters, it goes on and on and on. I am over it! Then the lady at the insurance company fights with me and says "well now that the feeding tube is not the sole source of nutrition and she is eating it is your job to feed your child" What? Zoey has always been on solid foods we just supplement with the feeding tube. OK my little rant is over, I hope everyone is having a nice week. One more thing....Insurance company I am charging you $25.00 an hour every time you waste MY time!!!!

Friday, January 14, 2011

Tales from the West

I had just dropped Zoey off at the babysitters this morning and I was down the street from my school. There was a moose standing in the middle of the road. I had to stop my car and wait for a couple of minutes for her to decide to cross the street. I also have a family of deer living in the lot behind my house. There are animals all over town this year. We usually have a few but this year they are everywhere, I think they are looking for food, we have had a lot of snow this year. The moose is always around the neighborhood of my school, but she had a baby so no there are two. It is a really fun day when they enter the school playground and we have to bring the kids in from recess.

Thursday, January 13, 2011

Zoey's Big Day

Zoey had a very big day on Sunday. We wanted to get out of town for awhile so we headed to Park City, Utah, it is very close to where we live. We went to see what we could find in the clearance section of TJ Max, they have great deals when you are lucky. I picked out a couple of things that I could use for work, Randy got something he needed. Although Zoey really does not need more clothing we figured we would go look and see if we could find anything on clearance that was a can't beat deal. Little did I know I was raising a little diva. She wanted everything she saw and started grabbing things. Randy and I picked two things and when she was not looking put the other outfits back. The funny thing is, there were also toys in that section, she wanted nothing to do with toys she wanted clothing.

Next we went to lunch where Zoey got to sit in her very own chair, no high chair or booster. (The didn't have one)

And last we took Zoey to get her first haircut. Mommy did not really want to cut her hair but these day's Zoey hates having her hair done and it is always in her face. I figured it would be easier so I gave in hoping we did not lose the curls in the process. (we did lose some of them). Zoey did not sit still for the cut, so her hair is not perfect but it is still cute. She does not look like my baby anymore, she looks like a little girl. The rest of the week we would put her new clothing on and do her hair (not easier this way either) and she would strut around the house shaking her butt, to show off how good she looks. It is the most adorable thing and reminds me of my niece Sienna who still walks around the house like that and she is seven.

 Getting her hair cut

 Dancing around in her new outfit with her new haircut
 Her a long time ago, I have no idea why this loaded but I cannot figure out how to delete it

 Silly faces for the camera

Sometimes

People are very good about asking how Zoey is doing. I always say fine because if I told them the truth it would be a long conversation. I don't think anyone passing me on their way to do something else wants to hear... oh well, she is acting like she is feeling ok, she has another bug in her lungs that we are trying to get rid of, we are all exhausted because we are doing 3 hours of breathing treatments a day and no matter how well you plan we never get enough sleep. I don't feel like anyone wants to hear that. I feel like they want to hear fine and go on with their day. Today I had a teacher ask about Zoey and then she paused and asked how I am doing. I think I must have shown a big sigh of relief. I realized sometimes it would be nice if someone checked in with the mommy. It made me feel so good that someone saw what was happening and was nice enough to ask. Mommy said she is very tired but doing the best she can with a tough situation. And having a lot of fun with Zoey when we do find the time to play, she is a fun kid.

Terrible Two's Tales

We bought this wonderful house last summer that we just loved. Then we realized the house only has two showers...no bathtub. Zoey has learned to take a shower at a very early age. Last night I ran water for her and turned to get something. When I turned back around she was in the shower fully clothed taking her shower. :)

Wednesday, January 12, 2011

Terrible Two's Tales

They babysitter told me that when Zoey gets an M&M she will put it in her mouth and then take it out and color on the walls with it.

Wordless Wednesday

Zoey and Daddy playing. Sorry I have been MIA other than short and sweet Zoey tales, I am working on Zoey's Big Day, when she got a hair cut but I have been swamped at work, we are ending one quarter so grades are taking a lot of time.

Tuesday, January 11, 2011

Terrible Two's Tales

The other day I caught Zoey putting her hand in the toilet and flushing!!! I cannot even imagine what germs she is picking up by doing that!!!!

Monday, January 10, 2011

Terrible Two's Tales

Last night my heart broke for my little munchkin. She had had a long day, a blog to come later tonight. She was tired and just wanted to cuddle with mommy. She did not want to do her treatments. Well of course that was not an option we did not want to skip TOBI and risk her culturing another gram negative thing-a-ma-jig. Her treatments last about 90 minutes at night. She screamed at the top of her lungs the whole 90 minutes plus probably another 45 minutes after. She screamed so much I was waiting for the cops to come to our door to see if we were beating our kid. She screamed so much she did not have a voice this morning.

Sunday, January 9, 2011

Terrible Two's Tales

Today while I was wearing sweats Zoey would throw a tantrum. I ignore her and when she is finished I pick her up and give her hugs. Today she did not want to stop throwing a fit and she wanted me to hold her. While I was ignoring her she pulled my sweats down. Oh the life!!!!

Friday, January 7, 2011

Terrible two's tales

This morning Zoey decided she was not going to daycare today and hid under the table so I could not put a coat on her!

Thursday, January 6, 2011

Craziness

This post may be a bit of a downer. I have had a rough week and just need to get my feelings out. I'm tired... so tired. You already know about our dog drama. Aries at this point is a lot of work, and Zoey is a ton of work with all of her added treatments. The thing is I feel so alone in all of this. My husband tries to be there for me but he has not had a day off since New Years. He worked last weekend and he has been working till about 8 every day this week. So when he comes home he just wants to sleep, of course I don't blame him. The thing is I am tired too. I work all day too. Yes I am not at my job until 8 but Zoey is way more work than a room full of 20 kindergartners. And I love her, but I am tired. Zoey this week has been very cute in learning new words, but she has also kicked temper tantrums in to overdrive. This kid will win an Oscar one day for dramatic scenes. I am actually a very patent person and I have not even raised my voice at her, I just let her throw herself on the floor and scream and when she is done we go on with our day. And we have had some wonderful mommy daughter moments this week. But sometimes I miss just laying in bed in my pajamas all day and reading a good book. Or going on a date with my husband. Or even just having a conversation with my husband that is not centered around treatments or picking up prescriptions or get this day off work we have to take her back for a lung culture. Or now, can you take the dog to get her dressing changed today or Friday? I miss grown up small talk. A conversation about nothing that seems like the most important thing in the world at the time.  I miss just going out for coffee with friends. After my alone week, Randy has decided that he is going snow boarding this weekend. I know he needs his time and he has had a rough week and I am trying not to be selfish. But what about my time? Because I have been the only  caregiver for Zoey this week because of his crazy schedule. And now I will be the only caregiver for Zoey this weekend, along with that now it is going to be my responsibility to get the dog to the vet to have her foot checked.  OK enough of that....funny things

Zoey threw my cell phone in the toilet, so if you want to call me.....don't I will let you know when I get a new phone.

This is not funny, it is awesome. My niece Tailor got into an honors choir.

One of my second graders today told me he got me a present because I am so nice to him, but he forgot to bring it.  I love my job but I don't love spending so much time away from Zoey who needs her mommy.

And the big one. I cooked a dinner last night for my family, not some fancy meal or anything. But then Randy was late so I left everything out for him and went and gave Zoey a bath. We came out and Ella (the dog) had eaten Randy's dinner. Right as Randy walked in the door I was putting the dog outside and Zoey took her towel off and ran to give her dad a hug...naked. It was sweet. I managed to get Zoey away from daddy who she misses when he is not here and get her dressed, then I went to comb her hair. That is when she went under the kitchen table so I could not comb her hair. At that point the only thing I could do was laugh.

I hope everyone has a good weekend.

Monday, January 3, 2011

This Just In.....

(Insert sappy music here)

Aries has learned to walk on three legs, due to one leg being bandaged for 2 weeks.

Her pain seems to be better.

She is scared of the back yard where she got hurt. I would take a picture of it to show you but it is below zero outside right now and....um.....no!!! Back to the scared of the backyard thing... Randy has to carry her outside so she does not use our house as an outhouse. So now Randy carries a 60 pound Rottweiler outside, I will have to get a picture of that one next time.

Saturday, January 1, 2011

Puppy Drama

Zoey was not my first baby. Of course she is my child and I love her, however before Zoey we adopted Ella Fitzgerald (Ella) and then Aries. I adopted Ella a week before I met Randy. She is a black lab mix and I love her to death. The thing with Ella is she needs puppy Prozac. That dog is almost 4 and she is still bouncing off the walls. She was my first "baby" and she knows it. She is so jealous she gets between me and Zoey and she insists on sleeping in our bed. I don't mind but it drives Randy crazy. I just tell him I was sleeping with her long before I was sleeping with him. :).  Then Randy decided he wanted his own dog shortly after he moved in with me. Ella was his dog but I had already spoiled her and she was the first prima donna of the family, he wanted a Rottweiler it has always been his dream. And that is when we found Aries. One look in her cute face and we were gone. Aries is Rottweiler/lab. She is more of a lab than anything but she has the markings of a Rottweiler. She quickly became my second "baby". I have a hunch she may have been abused before we got her. She is very very protective of me and cowers when any man besides my husband and my brother come around her. Because of her fear of men of course she latched on to me. She is a very gentle dog and puts up with a lot from Zoey, and keeps Ella in her place. My husband now lives with a wife a daughter and 2 female dogs. Can you say he is out-numbered. 

Well like I said before Ella is a prima donna, she is very careful about where she steps when she goes outside. It is funny because even as careful as she is, she runs full force. She can outrun Aries any day of the week.  Aries is the complete opposite, she runs and does not watch where she is going. Because of that Ella never goes to the vet for anything but shots, Aries is always getting hurt. Today I reached the end of my rope. Aries ran outside and came back gushing blood. I could not get her to even hold still so I could look at it. Of course Zoey was curious and decided to play in the blood. I tried to keep her out when I realized I needed to attend to Aries before she bled to death and then get Zoey out of the puddle next. I was lucky enough to have some first aid stuff left from Zoeys hospital stay and from when she had just gotten her g-tube in. I wrapped Aries' foot very tightly then put in a movie to keep Zoey occupied while I cleaned up the blood in the kitchen. All I can say is our house looked like a crime scene. I have never seen that much blood before. I managed to get the kitchen cleaned up and then I cleaned the blood off of me and Zoey. In the meantime my husband was racing home. Probably due to the panicked phone call he got from me that said get home quick. The problem was, he was an hour away fixing a truck. He is a mechanic and is on call this weekend. The next problem, it is Saturday and a holiday, will a vet even look at her? I checked on Aries who was still bleeding, I had to keep adding bandages to her foot. My husband came home just as I had found a vet to look at her. Randy picked her up, put her in the van and we were off. In the ride Aries managed to get her bandages off her and she started getting blood all over our new van. Oh.....joy...... We went in and the vet started looking at her, and finding a lot of skin. Randy could not take it and left the room with Zoey so he did not pass out. I am just weird I thought it was interesting. I could not believe what she had done to herself. There were probably 3 places where she managed to peel back skin, really deep. She is lucky she did not lose part of her foot. The vet put her out and went to work. 40 stitches two hours and $330.00 later we were back at home with a bandaged dog. All I can say is...so far I am not thrilled with 2011. Now we are dealing with 3 hours a day of treatments for Zoey and now keeping our dog medicated. What we think happened is she fell into a crawl space we have in the back yard. We have been trying to figure out what to do with it to keep Zoey safe. We figured the dogs would avoid it, I guess not. It is covered with wood back there but I think she fell through a corner of it. Now more than ever we want to figure out what to do. I hope someone can put some type of door on it with a lock.

 Ella, I went in looking for a Husky but I could not resist her floppy ears and her brown eyes, and her outgoing personality. Plus she was still little and she let me hold her like a baby. It was love at first sight.
 Ella supporting me with an MS bandanna
 Aries as a puppy, one look at that face and we were in love
 Both dogs taking care of Zoey
 New bandage

Still sleepy but at home with her own bed.