One face in 30,000 with CF

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

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.