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? 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.