One face in 30,000 with CF

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

Tuesday, November 30, 2010

The great poop adventure

It has been a rough couple of days for my Zoe. I wrote yesterday about the feeding tube fiasco, so she woke up at 4:30, but then came to bed and slept with me and my husband till 6. She screamed bloody murder and I thought it was just the pulling on the feeding tube. No such luck. She woke me this morning at 5, screaming bloody murder. I ran in there thinking that she was tangled up again....nope. But her belly was hard as a rock and she would not let me touch it without it hurting her. I picked her up and cuddled with her and yuck, she vomited all over the both of us. I felt so bad for her she just puked and puked and puked and puked. We usually have some puking episodes but this was different. After she was finished she just went lethargic. We laid in my bed again for awhile then I had to figure out what to do. My students are performing a musical on Thursday an today was the first dress rehearsal. My husband is in another city testing for a job. HMMMM what to do what to do what to do. I convinced Zoey's babysitter to take her for a couple of hours so I could rehearse my students in the morning. I have an amazing babysitter. At daycare all she wanted to do was lay on the couch. I figured when I came home she would want to sleep and cuddle..... in the meantime her GI called me and said he wanted me to get a test for C-Diff for her because of the bad belly aches and the intense diarrhea on and off for the last month. I figured it was either C-Diff or we need to change her enzyme dose. The thing is...Zoey usually only gets C-Diff when she is on antibiotics. The only antibiotic she has been on is inhaled, so I have no idea. The bigger thing....the only way to do a C-Diff test is with a poop sample.... yep you heard it a poop sample. There is nothing more gross than scooping up my daughters poop and putting it in the test tube. Then I had to say Zoey I know you are tired we will take a nap as soon as we take your poop to the hospital. And then walking in with a bio hazard bag and handing it to the lab tech. WOW it does not get better than that. Ha ha ha ha ha. Now I wonder what I do when she is potty trained, pick the poop up with a fish net? Then we came home and I thought it would be nap time. Umm Nope! Now she has tons of energy and is chasing the dogs. She still refuses to eat though. The thing with Zoey no matter how sick she is, she is still Zoey. Still laughs and chases the dogs, so it is not easy to know if I should worry or it is just a normal childhood bug. Hmmm, who knows but I love that she is such a happy baby, it is a comfort in the tough times that she is still happy.

Now I am waiting on pins and needles for the C-Diff test results. If she has it she has to stay home until it is gone. I hope my husband can stay home with her, at least in the mornings so I can get this Christmas program done. Awww the joys of parenthood. I LOVE EVERY MINUTE OF IT. Even the great poop adventure from today, Zoey is worth it.

 Please Ella don't let her make me take a nap!!!!
Fine Mom, I will lay here and suck my thumb but I will not go to sleep!


And she is still wide awake but cranky.

Monday, November 29, 2010

Bacon and Chocolate Chip Cookies

Okay, so this sounds really gross to me but I see several advantages to this recipe. First, it is really high in fat, always a plus where Zoey is concerned. Second, I am a vegetarian so I will not be eating these cookies, bonus since I am trying to lose what I gained on steroids this year. I got this from Lucy's mom on the blog A Day In The Life Of A CF Mom

Bacon Chocolate Chip Cookies!
7 strips bacon, cooked really crispy, dried on paper towel
**(SAVE BACON GREASE!!)

1 cup, plus 3 tablespoons all-purpose flour
1/2 teaspoon baking soda
3/4 stick butter softened
1/3 cup white sugar
1/3 cup light brown sugar
1 large egg
1 teaspoon vanilla extract
2/3 cups chocolate chips (I used semi-sweet Chunks!)
optional: chopped nuts

-Preheat oven to 350 degrees.
-Chop up your crispy bacon finely.
-Mix together flour and baking soda
-Cream together butter and sugars in a large bowl. Add egg and vanilla extract, and beat until just blended. Add the dry ingredients; beat until just incorporated. Be careful not to over beat! Stir in the chocolate chips, bacon, and optional nuts.
-Drop a large tablespoon of dough onto an ungreased cookie sheet.
-Bake for 10-12 minutes until golden brown on the edges and lightly soft in the middle.
-Let cool on a rack for only a few seconds and eat HOT! Store any left-overs in a container and refrigerate.
 
I have not tried these yet but Zoey and I will probably bake them this weekend.

Things that make you go Hmmmm

-Am I addicted to coffee, or do I just need it to stay awake? I woke up this morning and seriously though about how long it would be before I could get my first cup.

- Why did they cancel school twice last week but made us all go today? It just keeps snowing and snowing and snowing the snow plows cannot keep up. My van was all over the place and kept getting stuck. I finally came to work with Zoey and my babysitters husband came and picked her up with his four wheel drive truck. I am lucky to have the babysitter I have, they even have a car seat for Zoey. Zoey did not want to go with him, she wanted to be with mom, and I wanted her to be with her. We spent all last week together so there is a little bit of separation anxiety on both sides. She normally loves Steve. I go pick her up and she wants nothing to do with me if he is there.

-Will the weather be ok so my husband can go to Green River tonight? He is applying for a job and he has to go there to take a test. He really needs to get this job for his own sanity, the job he has now is not very good, he has to put up with things he should not have too. He keeps it because he will do anything for me and Zoey but I hope he can get a good job, he deserves it, he works hard for his family.

-For all of you CF moms or cysters out there I have a question? Zoey just got off of TOBI but I am afraid she still has the PA. I just heard about Cayston from another blog I read and it is for PA, from what this person was saying it is a wonderful drug. It there an age limit on it? I am wondering why they put Zoey on Tobi if Cayston is so good. 

-Is there a way to keep Zoey from getting tangled up in her feeding tube at night? This is kind of funny to talk about now but at 4:30 this morning it was not so funny. She just started screaming at 4:30 this morning. I went in and she was all tangled up in her feeding tube. Her legs were straight up in the air, if she put them down it would have pulled the whole peg out of her belly. Now if Zoey were older and understood this would have been really funny. But I just feel bad for her, she did not understand and that is a bad way to wake up. The pulling put her belly in pain, she screamed when I touched her to unhook the tube from the peg. We have already solved the problem with the tube getting wrapped  her neck. We now put a tiny hole in her sleeper and thread the tube up her leg and then hook it up. But she still gets all twisted in it 25% of the time. At least she is not choking herself with it anymore. If anyone can give me advice on this it would be appreciated.

Putting the Christmas tree up was such a pain we put off decorating it for tonight.
 Randy annoyed that I was sticking a camera in his face....again...LOL
 The forced smile after I gave him a hard time. Inside he is thinking please make my wife get that out of my face. LMAO
 Zoey got past her cage and right where we do not want her to be. She likes to push buttons.
 Brushing my teeth, brush a brush a brush
Hi to our new friends Madeline and Sophie, I cannot wait until I am big enough to send you my own messages, we are all Cysters together and even though we can never play together we will be the best of pen-pals.

Sunday, November 28, 2010

But You Don't Look Sick

But you don't look sick. Zoey and I both get this all of the time and it drives me crazy. What are people expecting? A wheelchair for me, a tank of oxygen for her??? Just because we do not show outward signs of illness does not mean it is not there. And it does not mean it does not hurt when someone just does not get it. We may not be having symptoms but we are still fighting. And we may be having symptoms it is just not obvious to the world.

I had a good weekend. I got to go see my sister and nieces who were at my moms house. I love my nieces like they are my own kids and I would do anything for them. We went ice skating. Zoey went with my mom who is a good ice skater. Zoey liked it the first time around but started falling asleep the second time around. It was during her nap time but we tried it. I knew she wouldn't make it but we went despite my bad feeling about it, and she did have fun when she was awake. My ice skating was humerus and could have won us millions on Americas Funniest Home Video's. I had no balance and could not stand up on the skates without hanging on to the side. Of course my sister laughed at me and took pictures. My niece Tailor did better than I did but she got bored and tired and did not want to skate so she and Randy and I just sat and watched while Zoey slept in my arms.
Anyway we had to cut our trip short due to another severe weather warning, but it was ok we have a lot to do at home. I am rushing to finish laundry and get the house clean and then we are going to decorate for Christmas. I also have a Christmas musical this week. I am a little nervous for it since they cancelled school last week due to weather. I am even more nervous that this new storm will cause school to be cancelled again this week. There is no other time to do this musical December is booked with programs every night.

On a happy note, here is a picture of Zoey and her lunch. After this we had to give her a bath, she already had syrup in her hair from breakfast. We are loving the TOBI free treatments, it feels like we have so much more time. I cannot wait until she gets her vest, that will help alot. A few more months. Her doctor won't let her get it until she is two.

I love this picture of her. It shows her personality. Always happy with a hint of getting into trouble.


TOBI

WE ARE DONE WITH THE TOBI, YES! YES! YES! NOW I WILL BE SITTING ON PINS AND NEEDLES UNTIL WE GO IN ON DECEMBER 7TH FOR A NEW CULTURE TO SEE IF WE REALLY GOT RID OF IT.



Thursday, November 25, 2010

Thankful Thanksgiving

So many thing to be thankful for, where do I begin?
  • I am thankful for my daughter and I am so thankful to be a mom, it is the best job in the world.
  • I am thankful for my wonderful family and friends, that does not always understand CF but supports me, Randy and Zoey with their whole heart.
  • I am thankful for the obvious things, a roof over my head, food, a job, and so on.
  • I am thankful for insurance although the people that run insurance companies are are a pain.
  • I am thankful for the solumedrol they pump into my veins on occasion to get the MS symptoms to back off. Although I am not thankful for the extra 40 pounds that seem permanatley attached to my ass.
  • I am thankful for my husband who listens to me rant and rave some days but still loves me and takes care of me and Zoey.
  • I am thankful for Xopanex, Pulmozyme, QVAR, Hypertonic Saline, TOBI, enzymes, feeding tubes, and anything else that is giving my daughter more healthy days on this earth.
  • I am thankful for the nurses and social worker at Primary Childrenst Hospital that have let me cry on many occasions.
  • I am thankful for the people out there trying their best to find a cure for both MS and CF.
  • I am thankful for my boss and my boss's boss who give me the time I need to stay at home for my health and Zoey's health.
  • I am thankful for my new friend Sandy with whom I have a lot in common with and she is quickly bcoming a "kindred spirit"
  • I am thankful for everyone that posts their CF stories on a blog. It helps to read the stories of others and know we are not alone.

Happy Thanksgiving Everyone


Wednesday, November 24, 2010

More Wordless Wed



 Momma's shoes
 Our soon to be famous artwork
 No, you never told me not to do this
The reason why we had two snow days. And our dog Aries. Well her butt anyway

Wordless Wed.






Tuesday, November 23, 2010

Snow, Illness, and Crayons

It has been a very busy week. My school district never ever ever ever cancels school and they did this year for the last two days. We are getting slammed. I have seen the weather worse and they still had school. I think what made the difference this time is all of the wind. The snow in my backyard was blown against my house and I can see my lawn. Zoey has loved staying home with mom. We have been coloring alot. I try to tell her the color of the crayon but she does not care. Then me, who should get the mom of the year award for this one, left her alone with the crayons for a minute to start dinner. By the time I got back she had chewed one up and she fed the rest of them to the dogs. I am still finding pieces of crayon everywhere.

Zoey has also started helping me clean the house. She throws her own diapers away. Then yesterday I went to throw something away and I found several items of her clothing in the trash. I guess she now thinks everything belongs in the garbage can.

I had a little bit of a cold but the two days off did me a world of good. I think I kicked it in record time but I also think I may have given it to Zoey. I don't know if she is being a cranky almost two year old or if she got my sore throat. She is also getting the dreaded cough us CF moms have a hard time hearing. I am uping her CPT to 3 or 4 times a day to see if we can kick it. We will be done with the TOBI on Thursday morning so I well be doing a cheer on that day. Zoey is starting to scream loudly during treatments. On Sunday night I could't take it and I started bawling too. My husband had to take over for me. This disease is so unforgiving, even when we are tired and sick and cranky, or it is a birthday or a holiday,we still fight with everything we have in us. As much as I try to explain to friends and family I am not always sure they get it...really. They see glimpses but not the whole picture of what is now and things yet to come. They can't I still don't completely understand. All I know is my husband and I are fighting with everything we have in us for our child and her health.

I know everyone tries to understand but they just can't unless you are living it. I don't think I will ever completly understand either, I can't feel what Zoey feels,, although I would take it from her in a heartbeat. I know everyone tries but then I hear "just let her be a kid" "why didn't you bring her to the birthday party, there were tons of people there?". "Why are you so afraid of her getting a cold?" Then I know they just don't get it, and I doubt they ever will. I don't get it. It is not fair. Why did Conners mom have to watch her child take his last breath, while he was asking why? Why is Skye having so many issues? Why did Eva get so close with a new pair of lungs but then her body rejected them? I don't think I will understand ever. All I can say is I will fight CF with every breath I have until we can say it is Cure Found.



I was going to add pictures but my computer is being a pain. I will try to add some tomorrow.

Thursday, November 18, 2010

Big News

I am excited about this article.

http://www.boston.com/news/health/blog/2010/11/small_vertex_dr.html?camp=misc:on:share:blog

MS, CF, TOBI, Bowling, and Cookies oh my.

This week has been a whirlwind of activities.
First, my husband and I are trying to find activities to do as a family not centered around TV. Now in this town it is hard there is not a lot to do and unless it is outside stuff and lets face it, outside in the rain and snow is not very much fun. 
On Monday night we made cookies. Zoey had fun mixing and pouring the ingredients in and she even liked picking out her favorite cookie cutters. In the end Randy and I were the ones that cut out all of the cookies and ate them, with the help of the dogs jumping up on the counter and finishing them. Zoey did not want to eat a cookie she wanted to run from one side of the kitchen to the other pushing her little pink chair and running into the dogs.
On Tuesday we went to a birthday party at the bowling alley. Zoey LOVED pushing the ball down the lane. She did not love waiting for her turn. She went into meltdown mode and after 4 frames we left. I guess bowling will have to wait until she is old enough to understand how to "wait for your turn".

I have been busy getting the second and third graders ready for their program today. Unfortunately my body chose this week to warn me to slow down. I am not feeling well at all. I have to remember I am not a regular CF mom. I have to take care of my daughter but also try not to wear myself out doing it because then my body tells me "no slow down". MS fatigue, vertigo, weak legs are all popping into the picture. Yesterday I taught two classes and then could not make it the rest of the day. I kept Zoey in daycare and went home and slept for 3 and a half hours. I picked Zoey up, cooked dinner and did all of her treatments then I crashed again. Today fatigue wise I am doing better but I have also had 4 cups of coffee. My legs are really weak and I am slightly dizzy. I should really take some time off but with the program this week I can't. Next week I will have 3 days off, so I am trying to hang on for just a few more days. 

I am starting to worry about Zoey a bit. She does not want to eat this week but her BM's are big, and 4-5 times a day. They are not normal. I am wondering if we need to up her enzyme dose again. The not eating, I am just hoping her growth spurt slowed down for a bit so she is not as hungry. However she has been really fussy. I don't know if it a two year old thing or her belly is hurting. I have a sore throat, I really hope I did not pass it on to her.

Zoey has had some big moments this week. I was getting my morning coffee at Luds Muds yesterday morning and the next thing I hear is Let's Go. As plain as day. I guess Zoey did not want to wait for mom's coffee. When she is talking I always hear Scout. That is her babysitters dog, so I guess she is always talking to her imaginary friend scout. Yesterday her dad went to change her and he said did you poop? She said No. Of course that was not correct, very messy diaper. Last night during her treatments she just cried and cried and cried. she did not want to do it anymore. I felt so bad holding her down and forcing the nebulizer full of TOBI on her. I am hoping this round takes care of the bacteria, doing this again in another 28 days will be hard on Zoey and my system. I don't care what MS throws at me, Zoey will always be my number one priority. I wish I lived closer to family so they can help out. But I will do what I have to do to keep my daughter healthy.






















Monday, November 15, 2010

When it rains it pours.

So... I warned you, when my MS started giving me problems you would hear about it. Since I had Zoey I have had attack after attack and it does not give me much of a break. I have been on steroids so much to get it under control I have gained 40 pounds in the last year. So I am feeling horrible about my weight and now I am feeling horrible due to my MS. MS appears when I get overly tired and overly stressed. I am both. I have felt it coming on for awhile but then on weekends I sleep a lot when Zoey takes a nap and I have managed to keep it at bay. Not so lucky today, the symptoms are starting to hit me full force. Stress??? Well I have a program this week and then my Christmas program in two weeks. Plus Zoey is still on TOBI and my husband has decided to stop helping me with that so I am taking care of her treatments all by myself. And my husband is causing me stress because we are not getting along. It goes on and on and on. Today I have gotten really dizzy, and blurred vision, and my legs are feeling really weak. I am still working because I have a program this week so I have to rehearse the kids for it. On top of all of that I think Zoey has gotten C-Diff again from all of the antibiotics she is inhaling, is that even possible? The last time I took a sample to a hospital here the CF nurse said they did not test for all strains of it. (I live in a really small town) So I should really take a sample to the Children's hospital. Well that is an hour away. How do you keep the test tube poop fresh to get an accurate test? Hmmm not a clue. At this point my husband will have to take care of it, I should not be driving with the dizziness I am feeling, that is not a good idea. Zoey is still doing great though with everything she is going through. She still is the reason I wake up in the morning, the reason why I am going to try to find a way to slow down and get better. It is all for her. Her smile, her laugh, her hugs and kisses. 

Zoey has a new accomplishment this weekend. She blew her first kiss. Probably seems trivial for other people but I love watching her learn and do new things.


Saturday, November 13, 2010

CF

Oh CF how I hate you. But I have news for you. No matter what you dish out to us my daughter still loves. She loves to laugh. She always smiles. She loves books. She loves to play. She loves her dogs. She loves her family and her friends. And we all love her and we are not going to let you beat us down. NOT THIS GIRL, NOT THIS TIME. I HATE HATE HATE YOU. FUCF!!!!!
 

Friday, November 12, 2010

Good day

Today has been a wonderful day for the most part. My second and third graders were out of control and I could have done without that but the rest of the grades just made me laugh today. I have always known this but I guess because I have been so stressed at home I really needed the laughter they brought to me today. These kids are so much fun, yes even second and third grade. If I could just teach and not have to deal with all of the other garbage that comes with it, I would have the best job ever. My students just come into my class glad to see me big smiles on their faces, and yes they love to give me a hard time, and I LOVE it. I love that they can just relax around me and be themselves. My most favorite one was the little girl who kept correcting me because I could not pronounce bonvivant. I am actually not even sure I spelled it correctly to be honest. She kept correcting me and then she just could not help but to laugh, and then I laughed and it turned into a really good class. I love it when my kids tell me I am wrong. 

Something else today just surprised me. Those of you reading this from Wyoming know that the national Christmas tree came from Wyoming. Well someone I went to high school with is performing the national Christmas song at the tree lighting. (he also wrote it) For those of you that don't know his name is Bryan Ragsdale. I can't remember what classes we were in in high school. I think I was a senior when he was either a freshman or sophomore. We played in band and jazz band together. The funny thing is, I don't remember liking him that much. You can know someone but can you really know someone? I saw him again tonight when he was performing here. I talked to him for awhile and he is not the person I remember at all. But it is not like I knew him anyway, I would not even have called him an acquaintance in HS, we were just in a couple of classes together. It is so funny how you can change so much in 15 years. Anyway, he was very sweet to Zoey and gave her a signed T-Shirt. He also agreed to come back and do a benefit concert for CF when I set it up. Does anyone know anything about throwing one of those? I have no idea where to start but this is the nicest thing that someone can do for my child and everyone else that is a "CF Superhero" I want to make sure it is done right. Any advice would be appreciated.

I also had a teacher asking about my blog when I was talking about teachers walking over me. That made me feel a little bad so let me make it clear I was not talking about all teachers just a couple of people, and if you are a face book buddy reading this I guarantee it is not you. Most teachers I work with are AWESOME. I just tend to run off my mouth and not think that anyone is actually reading this and I don't want to hurt anyone's feelings.

Much love and have a good weekend to all,
Kortney and Zoey

Zoey in her Brian Ragsdale t-shirt and daddy doing the dreaded TOBI treatment. 13 more days then 28 days off and if we got rid of it off for longer. 

Zoey Year One Video

http://www.facebook.com/video/video.php?v=410555405942&ref=mf


Ok, so this is my first attempt at making a CF fundraising video. It is Zoey year one.

WOW

OK, so today instead of writing a new blog I am going to go in and proof read my old blogs. I went in and looked at them and thought, WOW I must be tired, bad grammar, bad everything and I am a teacher. Very unacceptable. I have learned my lesson to proofread. Of course it is not going to be perfect, I am jotting down what is on my mind in the few spare moments I have in a day, I am not writing a thesis.  


Daddy's hat is too BIG.

Thursday, November 11, 2010

The New Reality

Everyday I discover new things. Like Zoey there are some days that everything seems new. In the last year and a half I have had a baby, moved into a new house and then gotten married. (Yes our order is ass backwards but I have always marched to the beat of my own drum) We have had to learn how to deal with a terrible illness and how to be married all at the same time. That was very hard and it was not planned to work out that way but Zoey is our blessing and she was meant to be here.

Now we have pieces of enzyme tablets all over our house because no matter how careful we are the plastic outer part always finds a way to fall to the ground.

Now we have the plastic medicine tubes for the nebulizer all over. Again we can be careful and throw them away but there is always one or two that get away from us, the dogs love to chew on them and Zoey loves to play with them also.

We have a new vocabulary, CPT, Enzymes, Salty skin, pseudomonas, staff, MRSA, Qvar, Xopanex, bronchodilator, spacers, pulmozyme, TOBI, Hypertonic Saline there are a lot more but that is all I can think of right now.

Now we have a bright and smiling little girl who is excited to see us and loves her mom and dad and her dogs, and everyday is a new adventure.

Now I actually have to wake up at 5 AM.


Now I am excited to leave work to go home, instead of going to the next bar with my friends.

Zoey is such a blessing to me I will take all of the bad with the good because life is more wonderful with her in it.
 My mom painted this mural in Zoey's room, I loved it, then we found a house we could not pass up so we moved.
 This morning when I was doing her hair, so interested in hair things.
Zoey and her dad about a year ago, life is good!!!!


 Remember to go to CFF.org if you are making donations this year for Christmas. Your generosity can help CF stand for CURE FOUND.

Wednesday, November 10, 2010

Tired Mom Walking

I have the most wonderful little girl in the world. She is full of life without a care in the world. As I am watching her grow and discover the world around her I have found myself heading in a downward spiral back to depression.


Last night I started Zoey's treatment regiment early because of the time change she is falling asleep earlier and earlier. We are still and the dreaded TOBI so it is taking another hour of our day. She is just over it, and she does not understand that mommy is not being mean, she just knows she wants all of that crap off of her face. She fought me so hard she fell asleep, and then when I put her in her crib afterwards she woke up and freaked out, and was very tense I could feel it in her body. She laid with me eyes wide open for an hour before she finally relaxed and could not fight the drowsiness off any longer.

At that point I was close to tears. The only thing I could thing about was, oh shit and I have to get up tomorrow and start it all over again, it is an endless cycle of treatments. Then something occurred to me. I am being selfish. Let me explain. When I was dong research on MS I was reading a book and there was a line that stuck out in my head. The author was saying he had a constant companion and his companion was MS. I then thought how lucky I am. MS is always a factor in my decision making process, yes. I do have to give myself a shot in the stomach everyday, and make sure I am not getting too stressed or tired because that is when MS hits. But in reality my MS goes into remission and other what I mentioned before I live a completely normal life. Then I thought that even on good days Zoey is still going to be fighting. It is not me going through this terrible disease it is her. We can get rid of that nasty bacteria in her lungs and call that a win for us. However it does not mean CF is in remission it just means that we will work hard to try and keep it from happening again which is near impossible since there is bacteria in dirt, standing water, in life. Then I felt how selfish I am to get down about treatments. What about my 19 month old that has to deal with the treatments when she just wants to play or cuddle with mommy, she does not want to have medication blown in her face all day long, and she does not want to be hit on the back and chest to get those nasty bugs out of her lungs. No wonder Zoey was so tense last night, she is taking a queue from by body language. If I am getting so upset over this how is she ever going to gain the tools to deal with all of this herself.

So I realized that and woke up with a good attitude this morning. Zoey hated hated hated her treatments this morning but I did it with a smile on my face and she seemed to relax. Then I got word my insurance is being a pain again. They denied our feeding tube claims, I appealed the decision, I was told they would cover it till the end of the year, now they are saying they are not. So now I have to take more of my time to fight with them so I don't have to pay the 3000.00 bill I have since they decided to stop payment in August without letting me know. I don't want to fight for insurance that I pay for. I want to hang out with my students and have fun teaching them, then go home and take care of my family. Now I have to figure out how to fight Altius, and then how to pay for her feeding tube formula which is 640.00 a month. Argggg. I am going to relax before I go home, I don't want Zoey to get stressed again.


Tuesday, November 9, 2010

Zoey and the snow... and out run CF

Zoey has been in her own world these days. She is discovering how the world works and the joys of life. It snowed all night last night and today Zoey and I emerged from our house, her in her new coat, hat and pink (of course) Snow boots. The second I opened the garage she was outside looking at all of the cool white stuff in our yard. What could that be? She marched around in the snow in our yard looking at her feet as she walked along, watching her boots make prints in the snow and listening to the crunch crunch crunching of the snow beneath her feet. Then she had to bend down and grab the cold snow to get a closer look at this new stuff she was walking in. I followed her around for awhile but then much to her resentment mommy had to get to work which meant Zoey had to leave her new found joy behind to get into the car. That did not make her happy. Here are some pictures of her and her new found friend. The second she was outside she was running so I don't have a picture of her face, just of her walking around. As you can see it was a very bright day so the pictures did not come out that well.


 Another thing new to Zoey's life is that she can do a lot more than what mommy must give her credit for. That means she can eat all on her own with her own fork, mommy absolutely cannot feed her. Many times she will look at her hands, the one with the fork and the one without the fork. With determination she must decide hmmm do I use the fork or my hand. Well of course the hand is much easier, however she is starting to maneuver the fork hand much better now and is eating more and more with her utensils.  It gets a little bit tricky when eating soup, however.

Another thing she does all on her own now is holding her own nebulizer. Here is a picture of her doing it all by herself.

This is great for me and her dad, the problem is, she thinks she can choose when to stop her treatments as well, which was about 10 minutes into her TOBI treatment this morning. She had already done 15 minutes of Saline, 30 minutes of CPT and 10 minutes of TOBI. That is enough right? Well of course she had 20 more minutes to go plus another inhaler. She was not happy with me when I put the neb back on her face. She pushed my hands away grabbed the neb and screamed at the top of her lungs OKAY. Now she has been saying okay for awhile but this is the first time that I actually think she new what she was saying. My baby actually yelled at me. :(. 


All of these new discoveries got me to thinking. I have always been Zoey's care giver. Now she is taking baby steps towards handling her health on her own. (Really baby baby steps) I think letting go is going to be hard on me. I want her to need my help it is such good bonding time with her. I am very proud of her accomplishments but then again I always want to help her. I know CF moms are supposed to let go and teach them to take responsibility for their own health, and I def don't want to be a smother mother, but I think when Zoey goes off to college Randy is going to have to stop me from going with her. It is going to be hard to let her take on responsibility for her own health and me just let go, and let what happens happen. I know the only thing I can do is guide her to make the right decisions regarding her treatment, and then let the natural consequences happen. I know it is hard for every parent but I think it must be harder when health is at stake and it is a life or death situation. I can just pray that I guide her in the right direction.


Speaking of the right direction. I have decided that I cannot tell Zoey to exercise to keep her lungs healthy if I am not doing the same thing for my own health. Because of this I am attempting to increase my jogging ability.  Right now I can go for about 60 seconds at a time with a 90 second break, for 20 minutes. I am hoping if I keep working at it by march I can jog a mile and Zoey and I can "Out Run CF" on March 20th. This is my goal but we may be "Out Walking CF" on that day it is hard to train to at least jog for 20 minutes when living in a town that has winter about 9 months out of the year. Either way we are going to register and say FUCF. Here is the link if you are interested in more information on the "Out Run CF" event.  I saw FUCF on someones shirt once and I just love that, I need to find that shirt.


http://www.active.com/running/anytown-mi/out-run-cfvirtual-run-2011


Happy Tuesday everyone and YES!!! Only 16 more days of TOBI