One face in 30,000 with CF

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

Friday, December 30, 2011

As The World Turns

Well I have been a great blogger haven't I? Let me give you an update on our lives.


Zoey: Zoey has been doing really really well. Since I pulled her out of daycare she is not culturing anything in her lungs. YES!!! That means no H-Flu, Psuedo, MRSA, or Staph. I am so excited for my little fighter. And.....Zoey is a very active two year old. She is "hell on wheels". I think she would even give a biker gang a run for their money. On a daily basis I tell her no that's dangerous, usually while she is climbing up on a chair to get on the counter, to get items I put way up high. Now her favorite phrase is "that's dangerous" just before she climbs up onto the chair.


Today alone Zoey has found a green marker and colored on a dresser and the walls. Then when I gave her crayons and a coloring book she decided to color on my kitchen table. In what color you say?....you guessed it green!


I don't know how her babysitter kept up with her when she was in daycare, but on a daily basis I think I did not pay her enough. Zoey loves the word no, and the phrase go get it. I am trying to teach her please but so far no such luck. She is very sweet and says thank you mom, all of the time. She also says "are you ok?" if my husband or I cough or say ouch, or yell a few choice words that she should not repeat, because we stubbed our toe. 


We did not have a very good clinic appointment the last time. Not because she is sick but because for some reason, I cannot explain Zoey lost weight. We have upped her feeding tube calories and we have turned it around, so all is well. 


Zoey's nose and sinuses are another story. I was having ear problems so I made an appointment with an ENT doctor. The night before I went to see him Zoey kept my husband and I up all night screaming and rubbing her nose raw. I thought she had a sinus infection so I had the ENT check her out. He sent her in for a CAT scan. It turns out she has nasal and sinus polyps. So far we are controlling the pain and discomfort with meds but at some point she is going to need surgery. The problem is once they do that she will need several surgery's because polyps always grow back. Kind of like when you pull a gray hair more supposedly come back in its place. All in all Zoey is great though, and if we make it through the terrible two's it will be a miracle. The good news is she will be 3 in March, then I can put her in dance and gymnastic classes to work off some of that energy, and work on keeping those lungs healthy.


THE MOM: Momma had a rough summer and I still have my rough days off and on. All summer I was fighting to get my health back after a stressful year at work. I was dizzy and stranded at home because it was not safe for me to drive. The one time I ventured 90 miles away to my moms house, my husband had to meet me halfway on my way back because I became too dizzy to drive. I also took 4 hour naps every day. I was lucky that at the time my husband worked nights so he was home during the day to watch Zoey while I slept. Beginning the end of September I started feeling better. Although I still sleep often I only take naps while Zoey sleeps, I don't have to sleep for 4 hours just to get through the day.


I also went through a pretty bad depression. It was hard having a career I loved and leaving that career. I still go back and forth on deciding what to do. I have to let the school district know by the end of March if I am returning or not. I go back and forth but I think I have to stick to my decision. It just is not fair to the students how often I am gone for my health or Zoey's and I need to leave so they can have a more present teacher. Plus my MS is in remission since I have been home and you already heard about Zoey's lungs post daycare. It is still hard though, I loved my job for the most part. I loved the kids and teaching part, not all of the other BS.


My husband and I have gone back and forth and back and forth about having another child. I was all for adoption but he does not want to do that. The thing is, my MS got worse post Zoey, probably from CF stress. And the lingering thought///25% 25% 25%. There is a 25% chance this child will have CF too. We have finally made the decision to try to have another baby. The deciding factor...Zoey. When my nieces are around she has soooo much fun playing with them. We babysat a little girl for a month while dad was in the oil field and Zoey had sooo much fun. I am very close to my sisters and brothers. I just could not deny her a sibling to play with and be best friends with. Randy and I both want her to have what we had. The thing is, we have been trying for quite awhile with no luck. Not even while taking clomid. I do not understand our infertility since Zoey was not even planned.I feel like God is saying you made the wrong choice Kortney, adopt, or just have an only child. I don't know what the answer is. The only thing I know is I don't know how much longer I can go month after month after month and nothing. The last two months when I turned up not pregnant I cried and cried and cried. It is never ending, wondering if there is something wrong with me, wondering if I made the wrong choice about having an only child or adoption. It is heartbreaking and wearing me down.


Another thing going on with my husband and I is that we decided since we got married the pounds keep creeping up on the scale. I started doing the P.I.N.K Method and LOVE it. I lost 6 pounds then I stopped doing it because Christmas week hit. Now that we are past Christmas time I am going back on it and my husband is going to do it with me. This method is meant for women like the exercises, but my husband can do is own work outs and the only difference in the food is that Randy will have bigger portion sizes on everything. The diet is really how everyone is supposed to be eating anyway, whole foods, no processed foods. And only whole grain carbs, no white rice, pasta, or bread, but whole grain is OK. I will keep you posted on that, we are starting it this weekend after going grocery shopping. If by some miracle I get pregnant I of course will not diet so to speak but try to eat what is on the plan, just more often and of course those extra 300 calories a pregnant woman needs. And of course working out is ok as long as I am careful and keep my heart rate down.


So as 2011 winds down my family is facing a lot of changes but we are all healthy and happy. Have a great new years. Christmas pictures coming as soon as I download them.

Sunday, October 2, 2011

News news news

I am not very good at blogging these days. And this one will not be very long. My daughter broke 3 keys off of my computer and it is hard to type.

Everything is going well. I like staying home and I am hoping i get my disability so I can keep it that way. My husband and I are thinking about me going back as a substitute if I don't get disability. Going the substitute route I can have a little more control over when I work and don't work. It would be hard though after ten years of teaching in the same classroom.
Zoey is a little monster but she is a cute little monster. Here are some terrible two's tales...
-She dumped a whole thing of salt on my kitchen floor.
-She fed her crayon to the dog.
_She pulled her feeding tube out of her belly a couple of weeks ago. And by the time I discovered it the sheets were covered in peptaman Junior.
-she colored on my kitchen table.
-I refused to fill up a spray bottle for her because she chases the dogs spraying them with it.... she got mad at me because I would not fill it up so she filled it up in the toilet. :)
-Her favorite line is "I'm gonna getchoo momma bed" In Zoey language it means chase me and throw me on the bed momma.
-More favorite words...."oh crap"....."no"....."mine"...."my spot".... "go" and she points her finger telling me or my husband or the dogs to leave the room.

She keeps me on my toes but I am loving life at home with her. I can actually understand what she is saying to me now. I feel like I actually know my daughter.

The feeding tube situation was an ordeal. I had to take her to the ER at 1AM to get a smaller tube put in because the stoma closed a little bit. But her GI was able to get it back in 3 days later without surgery and I was very thankful for that. The er visit the night it happened was not fun though. People, even doctors are clueless. Well here is a clue for those of you out there that do not get it...a CF mom DOES NOT want to talk about the prognosis for their child so don't ask. And, a CF mom is not clueless to her childs health and we know what we are talking about. So when I say you wont get the tube in, it closed a little bit...believe me I have been doing this for two years, I know what I am talking about. The doctor would not listen to me and tried to force the original one in hurting my child and making her scream. He finally said "well we will have to put a smaller one in" You think? That was the first thing I said to him, put a smaller tube in, but he had to prove me wrong.

Zoey has a nasty cough right now and that is not fun. She has moments where she will cough and cough and cough without a pause. Then when she is finally done she yells  owwweee! No matter what my girl has lots of spunk. I wish there was more I can do for her but we just have to wait it out.

Here is a picture of her drinking half and half in a restaraunt and calling it coffee, and a picture of my poor computer. I hope everyone is doing well and I will try to blog a little bit more.

 This was the day we had the feeding tube put back it. She finished off her lunch of half and half with a bowl of ranch dressing. She did not want her grilled cheese sandwich just the ranch.

 Zoey supporting the University of Utah
My new hair cut and color. My husband put on rubber gloves 2 sizes to small for him and helped me color my hair, with me out of work we can no longer pay someone to do it....now that is true love!


Friday, August 19, 2011

Odds and Ends

This post is way overdue. Zoey got her scope today. They did not find anything. I don't know how to take that. There is no reason for her to not be eating, or choking like she is. Well...the choking the doctor has an idea. He thinks she has a delayed swallow. I am not sure exactly what that means but the outcome is choking. He said CF kids don't eat due to what they go through in the beginning, before meds and before everything gets under control. He also said this means extensive work with a speech therapist who focuses on feeding issues. So all in all it went well. Zoey is such a good child, she went and hung out in a room in the hospital like no big deal. Walked back to the procedure room with me, let me hold her with a mask on with the meds to help her fall asleep, and was out. Then she woke up and went on with her day, nooo problem. I feel so blessed to have such a happy laid back child. She has been through so much already and she is still happy and does not let anything phase her.

On a lighter note. I am attaching pictures of our favorite thing to do during the summer. Take the dogs to the lake to swim. It is sooo funny. Zoey just laughs and laughs watching them. This time Zoey, my child with no fear, went into the lake about knee deep and played forever. When we told her it was time to go she cried.

Back to the dogs. Ella, the prima donna, is a lab mix. Aries, is a lab/Rottweiler mix. Aries loves to swim, she would swim across to the other side of the lake if we let her. Ella, likes to jump in the water and walk in it but when she gets to swimming she looks like she is drowning and comes back to where she can touch. It is so funny she can swim but she keeps her front paws out of the water so she splashes around like a fish out of water. I keep telling her labs are supposed to swim well so she is a bad lab. She still has fun though. Aries swims so smoothly, she swims around the lake like an alligator, just smooth. It is funny to see the differences between the two dogs. here are some pictures.

 Ella splashing around like a fish out of water, and Aries trying to cross the lake.
 I'm outta here!
 Both girls having the time of their lives.
 Ella going out to meet Aries and maybe steal the ball.
 This is about 10 minutes before she went into the water.

Ready to go to lake, with the shades.

Monday, August 8, 2011

The Big Scare

I had the biggest scare ever last week. On Thursday I was traveling to a family reunion with my daughter and two nieces. It was a long drive for the girls but we were doing good and having a good time. Then... we hit a two lane highway with road construction and got stopped for about twenty minutes. The girls decided to have a snack, including Zoey. They were eating fruit snacks. Next thing I know we are on our way. Because we were stopped so long we had a long line of cars behind us. All of a sudden my sweet baby girl starts choking. I look in the mirror and she is turning purple. I did not know what to do, there was nowhere to pull over. I finally just pulled to the side of the road and hoped and prayed cars would go around us which they did. However it would have been hard to get Zoey out of the car to do anything because the risk of getting hit by a car would be very real, there was no shoulder we were halfway in the dirt and halfway on the road with angry drivers going around me. I feel so blessed to have had my niece Tailor there with me. Before I could even get out of the car Tailor who is twelve climbed in the back seat and stuck her finger down Zoey's throat and pulled it out. She was so calm. It seemed like she just knew what to do, and she has had no CPR training. I cannot express how grate full I am for her and her calm presence in the car. She saved Zoey's life and I cannot express how that feels. She is a sweet amazing little girl.

We now have new rules in the car...no eating, luckily we are done with our summer travels so that will not be an issue any more.

Zoey is choking more and more and I am so scared. She is getting a scope on the 19th and that will be one of the things he is looking at, why does she choke so easy. I hope he can find something to help us. I also went into my doctor today to fill out my work disability paperwork but I also made him show me how to deal with a choking child. I know what to do with an adult but not Zoey's size. I now know and hope and pray I won't have to use it. Zoey has been through enough this choking thing is just about putting me over the edge. I am still really nervous and scared over what happened five days ago. She is fine and it did not phase her but it phased me.

 Zoey chillin in the car after about 5 hours into our trip.
Zoey with her cousins Sienna and Tailor. Tailor is the tall one and is Zoey's guardian angel.

Tuesday, July 19, 2011

Reflections

I feel like what my life looked like six months ago is showing a completely different picture. I am loving staying home with Zoey but not seeing my students anymore and teaching is hurting a little bit. I know I am doing what is best for me and Zoey but I still have the "what if" thoughts. My comfort is that I have a year to go back. Going back may be a possibility if we cannot make it without my income. It is all scary.

Zoey is doing great other than we are working on feeding issues with her. She eats okay sometimes but she has a very limited amount of food she will eat, we are trying to change that. I know, I know, I know, I hear all the time it is her age, it is normal. The problem is she has CF, she has got to eat or we are never going to be able to back off of the feeding tube. Plus, she was evaluated by our local child development group and she is not where she needs to be for her age, so she qualified for a speech therapist to come to our house that works on feeding issues. Zoey loves her, she always has fun new games for her. The next time she comes we are going to have a fun tea party. All I can say is I am the Mommy, I know what help she needs. I just wish people would realize that Zoey is not a normal child, as much as I try to keep her childhood normal. I know what I am talking about when I say she has feeding issues. She HAS to have calories to keep her lung function going. The only thing I can say to the doubters in my life is, unless you are walking in my shoes stop judging me and stop telling me "let her just be a kid" and "oh that's normal" or my personal favorite "you keep her in a box". Well normal and just a kid for her is different for a kid without CF. I am doing the best I can to keep her healthy so she can have a normal childhood. And I can proudly say she is healthy and is having a normal childhood, but not without a lot of work on mine and my husbands part.

My health has been pretty good. I knew as soon as I removed some stress I would feel better. I still have some pretty bad fatigue but now I am home so I can take a nap with Zoey if I need to. I do have weak legs from the last attack but all I can do is work on getting strength back in them. The heat does bother me, so I try to stay inside during the hottest parts of the day. I have limited feeling in my fingertips in the left hand. That has been for about 2 years now. I am thinking that part of my brain is not going to heal itself and I am going to just have to live with it. It used to drive me crazy but I have adapted and now it is my "new normal" Plus in the grand scheme of things it is really not that big of a deal, it could be so much worse.

I have started making bows and tutu's. More for my sanity so I have a project and don't go crazy at home. I am just starting but if you want to see what I am up too, it is on a new facebook page I have called Zoey's Closet. Come visit us anytime.:)

http://www.facebook.com/?ref=home

I hope everyone is having a great summer!

Wednesday, July 6, 2011

Wordless Wed.

Zoey making cookies and licking the beaters and licking the dough off the counter. It was eventful. I turned my back for a second and when I turned around she was picking up handfuls of flower out of the bowl and throwing it all over the kitchen.






Saturday, June 25, 2011

Sleeping baby

Zoey hates her picture being taken now. I can only get pictures of her sleeping, and off guard, or hiding under a giant bumblebee hat.

Any advice on potty training. Before she turned two she was at least interested and even went on the "big girl" potty after dinner. Now she wants nothing to do with it.

I am enjoying the stay at home mom gig right now. I feel like I am getting to know my child again. She LOVES outside. Even though I only understand about 15% of what she is saying, we can sit on the back step together and have the most wonderful chats. Of course she is speaking a different language but it is still fun, and relaxing. And I love every minute of being home with her. I often times let her go outside with shoes on in the back yard, only to check on her 2 minutes later and she is walking bare foot in the grass. She hates having anything touch her feet, shoes, socks, blankets, the list goes on and on.

She is developing a cough. I don't know if it is allergies or a cold. I want to say allergies because her nose is just a mess and it is allergy season. However, my husband has strep throat so it could be a cold. If it is I hope it is just a mild one with no damage to the lungs! I know it could be an irrational fear but the CF clinic has been mentioning another hospital stay again. I have been trying to hold off and see if she gets better. I just don't want her to be in the hospital again, we have not been able to make it a year between visits. I will take her if I need to, she comes first, however I don't think she has been really bad. Since we put her back on TOBI her oxygen level went from 91 to 95 so we figured she just got the PA back. If this thing she has is a true cold, I don't think the clinic will let me hold off on the hopital any longer. We shall see. I am going to get her throat checked on Monday, she has been sticking her fingers in her throat like it is hurting her. Such as life, we live in the "strep belt". I had to get my tonsils taken out after my first year of teaching because I got strep throat every other week.





She loves her pool!!! My labs like to lay in it with her, they get so hot. LOL

Sunday, June 19, 2011

Terrible Two Tales

Sunday, laundry day. I had separated all of the clothing into different colors, started a load with the help of Zoey then went and sat down to take a break. In about 2 minutes Zoey brought a laundry basket into the living room and put all of the clothing back in the basket. Then she gave me a high five for doing it. She was so proud to be "helping". Oh well, I guess I will sort the clothing again later.



Wednesday, June 15, 2011

New start

I am feeling a little bit lost. Me taking a leave from my job was the right thing to do for me and for my baby but I spent a lot of time in college to become a teacher, then I have taught for 10 years.....now what? I do not know where to go from here! I have always had a goal in mind, college, job, masters and job, improve my teaching...... I feel lost without a goal in mind. My goal will be....keeping my MS in remission and keeping Zoey out of the hospital for longer than 9 months. I think I need a project.

In the meantime my husband is working hard to find a job, they laid him off from his last one. He needs to find a job with insurance or I am going to have to go back to work in the fall. I do not want to do that. Saying goodbye to the kids was hard enough, having to do it again after teaching another year would just be too hard. Plus...I need this time to get my health back, I need to get off the steroids that help with my MS and lose the weight I gained while on the steroids...I am talking almost 50 pounds I gained and I am NOT happy about it and NOT comfortable in my own skin anymore.

I have started weight watchers and I am doing ok on it, losing 2 pounds once a week, I have only been on it two weeks. I just wish it was coming off faster but I know slower is better for your health and keeps the weight off. I am also going for walks twice a day and getting on my elliptical trainer. This was all things I did not have time for before, it was all I could do to come home from work, cook dinner, dishes, bath for Zoey, breathing treatment. When my husband was working it was at night so he was not there to give me a break so I can work out. Now I have time and I am loving it, I feel like I am fighting my MS by getting strength back in my legs, and walking. I can now walk for 30 minutes straight without losing the feeling in my legs. Now most people can walk for 30 minutes without a problem. For me it has been hard but I got there. My legs have lost strength and of course my extra 50 pounds I am carrying around. But I can do it now. I beat you MS!!!

My husband is having no luck finding a job here so he is now looking in a bigger city about an hour away from us. So on top of everything else we may have to find a way to sell our house and relocate to Green River Wyoming. It is not a huge deal because that is where I grew up and where my mom is, so we would have family support. However it is kind of a big deal I like where I am and I have friends here and my students are here, where I was hoping to run into them every once in awhile so I can still watch them grow up.

I have also been getting to know my daughter a little bit better. When she spent weekdays in daycare I missed a lot. My child is a clown, I see her being the class clown in school. She is so funny and she has the cutest expressions with her eyes. She talks non stop even though I only understand about 10% of it. She likes to tease our dogs and bounce on her daddy. And...she LOVES outside. I keep saying if we let her she would live in our back yard. She has learned to open the back door and just go out, which is kind of scary but not really we have a fenced in yard so she can't go anywhere
other than to her swing set. She also HATES shoes and socks. I cannot keep them on her. I ran errands with her today and we made two stops, both times I had to put her shoes back on. I put shoes on before she goes outside only to see her running in the grass bare foot. While Zoey is in the backyard she has no problem going in the dog kennel and playing in the water. I cannot keep her out of water, if it is in sight she will be in it. I went and got her a little wading pool this morning. It is inflatable and only holds about 2 inches of water, but it has a slide and a palm tree that sits in the middle that has water coming out of the top like a water fall. It is cute. She did not get a chance to use it today I am hoping it will be warm enough tomorrow but we will see. We have yet to see summer weather here, but thankfully it has gone to spring weather here, I am not waking up to snow anymore. I cannot wait to see what else Zoey is going to hit me with, she is a funny girl. She has her favorite blankie, and every time so goes outside she grabs it and says come on blankie. She also says that to her Micky Mouse. I often time see her in the backyard dragging the blanket like Linus in Charlie brown, through the grass, and holding her Mickey Mouse. Today she also grabbed her inflatable duck that we give her baths in and took it outside.

 Daddy being silly and Zoey screaming because Daddy had the nerve to tell her no to eating dog food.
The kitchen table is the perfect place to sit, I will just knock over the flowers first. She is also playing with the birthday card I got for my niece, it is a singing card. Sienna will never get this card, Zoey decided it was hers, played it all day, danced to it, and chewed on it.

Friday, June 10, 2011

Museum Pictures

We went to a children's museum a couple of weeks ago, here are some pictures.







Thursday, June 9, 2011

Terrible Two Tales

Zoey came up to me the other day, pointed her finger at me and said "Mickey, NOW" She apparently wanted to watch Mickey Mouse. Now a sane Mommy would not let her child order her around. I however, am not a sane mommy, I laughed because I could not help it and turned on Mickey Mouse for her.

Zoey's Daddy would not let her play in the dog food while the dogs were eating. She got mad at him ran to me in tears and sad "Dadda Bad" Again I just laughed. She does not understand why we won't let her eat the dog food.

Monday, May 23, 2011

Long Break

 I know I am not blogging a whole lot, I have been busy ending my school year. It has also been busy with Zoey. Her blood oxygen went from 96 to 90 so we have been watching her close. Here are some pictures on the day of the CF walk hanging with my mom. And pictures of her new swing set that she just loves and would live in our back yard if she could. I hope everyone is doing well.








Tuesday, May 3, 2011

31 days of Cystic Fibrosis: Day 3:FIRST BOUT OF ILLNESS/FIRST ADMISSION/ADMISSIONS TUNE UPS/Admissions What happens Life in Quarantine!

Zoey had 3 hospital stays in 2010.

The first one was in January. She had been really sick with the flu and she got so dehydrated she had to go in for fluids. This hospital stay was not at the Children's hospital, it was in the hospital in our small town. I will NEVER do that again. This hospital staff did not know how to deal with her CF #1. They poked her 7 times to get an IV in her. It was horrible. This was just an over night stay.


Her first official clean out was in the end of February beginning of March. Zoey was in daycare and she was sick all of the time. She was getting cold after cold after cold. Finally one day she just started coughing stuff up and the doctor said ok it is time for a clean out bring her in. At this point she also had C Diff so we were stuck in the room. It was hard and but this visit did not seem to phase Zoey, she had fun playing with her toys that the child life specialist brought for her. The visit was harder on me I think. No one wants to see their baby with a picc line. Zoey also had her feeding tube put in. I had to lay her on the operating table and look at the fear in her eyes until she fell asleep. That was by far the hardest thing I have had to do to date. I just wanted to scoop her up and comfort her and "break out" of the hospital.


The third visit was in December right before Christmas. That was a little bit harder. I do not even remember why they brought her in for a clean out this time around. This time Zoey knew what was going on a little bit more. She did not want to be there, I think we watched Tinkerbell about 400 times. This time around Zoey had a simple cold and so again we were quarantined in that room. I know she does not understand the concept of Christmas but I knew. I missed our Christmas tree and making cookies with Zoey for the neighbors. One day in the room Zoey put her coat on and said go. I wanted to go too! There were no surgeries or anything. And....Zoey did so good they let us go a couple of days early so we were home for Christmas.

Hospital over Christmas




 First Hospital Stay
 First clean out second hospital stay