One face in 30,000 with CF

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

Friday, November 7, 2014

Here I am again

I was an elementary school music teacher for ten years. I loved my job but fate sometimes takes you in directions you can never imagine. I have MS and my oldest daughter has CF. The stress of having a full time job and being the primary caregiver for my daughter made me really sick, so I chose to go on disability.  When I was in high school and even college I would be astounded when girls would tell me their one ambition in life is to be a stay at home mom. There were girls I met in college who were just in college to meet a husband. I did not understand it so I mocked it. I still have problems with women going to college to meet a husband, I do however understand wanting to stay home with your kids.

I love staying home with my kids, however I miss my students and teaching, I miss having adult conversation during the day, I miss who I used to be. I know I made the right choice, however. The summer after I quit I was lucky that my husband was on nights because I could not function unless I had a three or four hour nap each day. I slowly got better as far as my MS allowed, I get new symptoms every so often, have had to use a cane a few times, which is hard for a thirty something woman to deal with. However, I am lucky, some other people with MS are in wheel chairs and in chronic pain. I am in pain but I can manage it most of the time with high doses of Motrin. There are days that I need muscle relaxers but I can't take them, they make me too tired and that does not work with having young children.

I am the stay at home mom of two little girls, Zoey who is 5 and Aryiah (Mariah with out the M) 20 months. They both keep me on my toes. I am also the proud mom of two labs named Aries and Ella. My husband Randy is amazing, however he works 80 hours a week to keep our heads above water. I love him for doing that but we all miss him when he is not home. Medical bills for two chronic illnesses even with insurance is killing us.

Zoey is in kindergarten and I home school her. I don't home school in the sense that I find my own curriculum and write my own lessons, she does online school. She is in Connections Academy which is still public school, she has a teacher, she just does it online. One big reason we chose this is because Zoey spends a lot of time going to doctors appointments and spending a couple of weeks in the hospital every once in awhile. We did not want her to get behind in school. However, we love it. Zoey only spends a couple of hours a day in school and she gets more classes. My favorite being a  music teacher is that she gets music classes from Julliard. We are both loving it. I am loving doing school with her, and I love the time I get to spend with her. My husband and I wanted Zoey to have a social life so we have her in cheerleading, gymnastics, and dance. She loves it and I love watching her. These are also good for her lungs and now she is pre diabetic so the exercise helps with that as well.

Aryiah is a little terror. I thought I had my hands full with Zoey, boy was I wrong. In the last couple of months I have found several rolls of toilette paper in my toilette, her daddy's socks, her sisters shoes, garbage, and toys. She terrorizes the dogs, slammed the door in my face today and is the cutest thing ever, we just love her and her little attitude, until she gets older then probably not. She is a total Mommy's girl so she wears me out to no end. She loves her sister unless sissy sits on moms lap, and she loves her dad most of the time, unless she wants mom at that moment in time. Once she learned how to walk it went from walking to running very quickly.

Needless to say things have changed a lot since my last post but we are all doing well.

Here are my girls, how fast they grow.

 Aryiah decorating a pumpkin

Zoey, ready for gymnastics

Saturday, July 28, 2012

Big News

We had some big news a couple of weeks ago. We are expecting our second child around Zoey's fourth birthday. It was a big surprise. Not that we were not trying but we had been trying for quite awhile and nothing happened. I guess things just happen when they are meant to happen.

With this news brings great joy and a lot of fear. This child does have a 25% chance of having CF. Not big odds right? Well Zoey was also a 25% chance it happens. We have decided not to get prenatal testing to find out. The testing can cause a miscarriage and we have tried so hard to get pregnant we don't want to happen. And since the results will not change anything then why do it? We will just make sure to watch for the blockage that can happen during the pregnancy. I know they are so close to not a cure but to a drug that is going to change the lives of all CFers and has already changed the life of 4% of the CF world with their mutation things are looking bright. But it is still scary. And then it is scary that this child does not have CF because that is all we know. It will seem so off to me to feed a child without enzymes. LOL

I am a little scared about Zoey. She is used to having just me and I want to still give her the love and attention she needs. It is hard to imagine loving someone else as much as I love Zoey. It is amazing the capacity the heart has to love.

So that is our big news. My husband and I are excited. I don't think Zoey knows really what is going on even if I do tell her. Maybe when I start showing and she can feel the baby and see ultrasound pictures it will make more sense to her.

Wednesday, May 30, 2012

The Great Cake Experience

I had my foot surgery about 6 weeks ago. The first four weeks I could do nothing but sit with my foot up. The last couple of weeks I have been able to walk a little but my foot starts to hurt after awhile. Yesterday I had had enough of just sitting so I decided to bake a cake.

I LOVE Pintrest. If there was an addiction self help group for pintrest I would be in it. I found this cake recipe and thought "I can do this"

Yeah, I know nothing about cake decorating but I can do this. Boy was I wrong.

The first thing I did was make the red velvet cake. it turned out like this.

Then I made the crust for the cheesecake and made the chocolate syrup that went on the bottom of the cheesecake. During this time my cute daughter grabbed a cube of butter without me seeing it and went and hid behind the couch with it and started eating it. Yes... I KNOW, eating butter? After awhile I hear her laughing and laughing so I go in to check on her and I see this...

She was behind the couch eating the butter but then popping up to tease the dogs. So then my dogs were climbing on the couch trying to get the butter from her. Then I smell and it was not the smell of the cake or the cheesecake. For those of you that have CF kids know what that smell is. She pooped in her diaper and it was not a little stink but a big one that stunk up our whole house for about 3 hours, it was horrible. So what does she do when I try to grab her to stop the butter excitement and change her? She goes back down behind the couch where I cannot reach her at all. I had to wait for her to come out so I could change her and clean her up from the butter, but not before she rubbed it all over my couch. Still not sure if I am ever going to get it out.

After that excitement I went back to me big cake plans. I made the cheesecake part of the cake.

After that I had to cool both the cake and the cheesecake before I could put it together. Then I put it together and it looked like this.

It did not look as cute as the picture but whatever my decorating skills will fix it.  Ha Ha yeah right! I will show you how it turned out. Now I was supposed to drip white chocolate over it except it did not have a recipe. I mixed it with whipping cream. It did not turn out thick at all and made a puddle on my cake. So here is my red velvet cheesecake. I think I will quit my cake decorating endeavors and find a different hobby. It did not even taste that great. Cheesecake part was OK but the red velvet cake not so much. I will have to find a different recipe for it.

Monday, May 21, 2012

Organization and Pain

   I have been doing a lot of nothing recently. 4 weeks ago I had pretty major foot surgery. 13 years ago I worked at Wal-Mart in Logan Utah. I was on a ladder trying to prove that I did not need a man to lift a stereo I had sold. Well guess what, I could lift the stereo but I put my ladder to close so when I pulled the stereo down there was no more room for me and down I went. I broke my foot and dislocated my shoulder. Now you would think that I would have been mad at the injury but I was more mad that the customer decided not to buy the stereo, and I was really embarrassed.   Anyway the doctor that took care of me should have put a pin in my foot then, and didn't so 4 weeks ago I had 13 years of damage that needed to be repaired. The first four weeks I could not use my foot. That was hard when I have so many things I need to do in a day to keep Zoey healthy. I was lucky, my mother in law stayed with us for four weeks. Zoey kept her very busy.
I am now walking in a walking boot but I am actually in more pain than the week of the surgery. A lot of that has to do with the fact I did not use my muscles for four weeks, well, and because I have a bunch of screws in my foot. I have also been going to physical therapy for a few weeks and he has to stretch my foot, and the exercises or working my muscles that got lazy on me. :). I am hoping I will be back on my feet at 100% soon. Even now that I am walking I still have to sit more than moving. If I over do it I pay for it by being up all night in pain. I know I just need to take a break and let my bones heal but I am so anxious to get back to my normal activities.

Speaking of normal activities, I am trying to get better at it. Everything I have read says kids need to be on a schedule. Well, what kind of schedule do I put her on when she is not in school other than 2 days of pre-school. I also feel like I am always 2 steps behind on everything. Well, I have started reading another blog at Crystal is the person that runs this blog. Crystal seems to have about as much OCD as I have about organization and schedules. The problem is, I have never been able to get organized with my OCD. Crystal has great ideas on how to schedule and get control of daily life. I have just ordered a super cute planner from her that she designed and makes. She is also sending me one for Zoey. It is a way to get our life balanced and I am hoping it will start getting Zoey excited about keeping track of her own treatments and so on. I have designed a check of list for her that she can check off every time she gets a task done. At the end of the week if she get's all of her check marks I am going to take her to the dollar store to pick out a prize. This check list is going to go into her planner that we get next week and it looks just like mommy's. The planner for mommy will help me keep track of meal plans, grocery lists, a work out schedule, and even a cleaning schedule. I hope it will give me a more balanced life. I always feel like I am rushing to get cleaning done at the last minute. I can also put in an activity that I will do with Zoey every day. If you are like me and want to get your life under control and you are into schedules and lists, I recommend you look into this planner, they are really cute and they make sense to me, they are not like the regular planners, this one is actually for a mom with a busy life. Here is the link to find them.

I will keep you updated on how it works for me.

Here are a few pictures. I am working with Zoey on a different color a week. This week is blue week. We made an ocean on a Gram cracker, and also a picture of Zoey putting her foot up. She decided she has an owie on her foot just like Mommy and puts it up on a pillow like mommy.

Wednesday, March 21, 2012

Oh the wait and the weight.

Several things have happened the last little while, however life is chugging along for us. I have officially quit my job. This last year I was on a leave of absence, however in that year I have stayed away from IV's and MS attacks and Zoey has stayed out of the hospital. No matter how much I loved my job, I love my child more. I want to keep her as healthy as I can.

Zoey is not doing so well on paper but from what I see she is great. This kid never stops moving, she is happy and she is busy. We take Mommy and Me classes twice a week and do other projects the other days. Her third birthday is on Saturday. What is not good? She will not gain weight. She has been between 28 and 29 pounds or months and months. No matter what we do her weight is not going anywhere. The thing is Zoey is still getting tall so in that reality she is probably really losing fat and gaining height. At last check Zoey's BMI is in the 3%. She is tall but scrawny, I can see every rib in her body. The problem is we could not get her the calories she needs because A: she is not interested in eating and B: After so many feeding tube feeds she would just throw it up.

When throwing up became a problem we took her into the hospital and had the G tube removed and a GJ tube put in. That is a feeding tube that goes into her intestine so she cannot throw up. The problem is now it just causes dumping. All of those calories just come out the other end. She has no control over it and because of this we are having a hard time potty training so we stopped pushing it until we get this under control, then I think she will want to do it. She is very interested in it.

The Solution: The best answer is I don't know. We have an appointment on Tuesday and her GI told me to pack a bag just in case. He is probably going to admit her into the hospital to see if we can solve this problem. He wanted to do it this week but her birthday is on Saturday and I want her to have fun on that day.

Zoey was supposed to start preschool next week but since she will be in the hospital we will delay it for a couple of weeks. She is just going for playtime and snack for right now anyway, she does not have the attention span for actual listening to a teacher, the actual preschool curriculum she will start in September when she is a bit older.

So I will keep you updated on the mystery that is Zoey and her weight. In the meantime I am adding pictures of a project we did together on Monday. I drew out her name and she filled it with play dough. We had a great time. When we were done she pointed to the Z and said Zebra, then she pointed to the E and said that's an E. She is either recognizing letters or the sound they make with the animal that she gets from books. She is very bright and she loves learning. I got this project idea from I love that website she has so many great ideas. Anyway enjoy the pictures.

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? 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 that is true love!