I'm just about DONE!!!

This room is starting to get REALLY small... we have been here for 11 days and counting. We will be getting out on the 29th so just two more days, and I think that might be why I'm going stir crazy because we are almost out of here. It could also be because one, it's hard to keep a 2 and half year old occupied for so long :) or two, it's the thought that we get to leave and then turn right back around in 6 days and come back for another 3 to 4 day stay considering on how Carson does with the G-tube surgery. I guess one of the good things about this stay is that I have gotten a chance to sit down and really think and come to terms with Carson getting this G-tube. I can say that my feeling of being a failuer has turned into more like this is something that needs to been done but still wishes it didn't have to be done ( if that makes any since at all ).

But on a happier note even though we spent Christmas in the hospital we still had a GREAT day. The boys got to see each other after not seeing each other for over a week, and after their first initial "Oh hi Brober" they were back to fighting like cats and dogs and that was music to my ears.. HEHE. The boys also got more toys then they will know what to do with so when Mommy does get home I will be going through toys and giving some away or putting them away for a couple months then rotating them out. Well I think that is all for now, I will be updating how Carson is doing after his surgery and I do hope everyone had a wonderful Christmas.

Words I just never wanted to say.....

So day I said the words I never wanted to say.... Today I told the doctors that Travis and I wanted Carson to get the G-tube. And I actually did ok saying it, because I thought I would brake down when I told them but I didn't yet I still felt as if someone had punched me in my stomach and then I kept hearing in one ear "Failure" and in the other ear I was hearing "It's ok". And I know... I know I should not feel like a failure but it's hard not to some times when you think getting your kid to eat "should" be easy. And in Carson's case it hasn't been easy and it just hurts to know that I tried EVERYTHING to get him to eat, to try new things and even go to great links to getting him stuff that he would eat. So yes today I couldn't help but feel defeated in doing my Mommy duties in just getting trying to get my baby to eat, something that we do everyday. Something that is just human nature to do and yet again CF slaps you in the face and takes that away from you.

I do know in my heart that we are doing the right thing for him but I had to exhaust all my other options before this option. So I guess right now all I'm truly focusing on is getting him better and out of the hospital and I know that we would have liked to have been out before Christmas but.... it just doesn't look like that's in the cards. We should be getting out the day after Christmas and we will be leaving with a wonderful parting gift that will help Carson grow big and strong and maybe just maybe take a little worry off this Mama on not having to STRESS so much about how much he is eating right now. So then it can leave room for me to stress about something else LOL. Because really... do Mama's ever really stop stressing out about their kids? :)

I hope everyone has a wonderful Christmas and a New Year that brings you nothing but love, laughter & heart warming moments.

Sammies!!!!!!

Oh the life of a CF Mama..... So I know that as a Mom you would do ANYTHING for your kids and being a CF Mom you get to do Mom things in special ways sometimes. And that is exactly what I did yesterday, you see my Nana, me and the boys went on a road trip to Woodburn Oregon. Now just so you kinda get an idea of what has been going on here. As most of you have read in other blogs Carson my oldest is a VERY picky eater and yes Carson comes by it quite honestly because Carson's Uncle ( My Brother) and my Mother were very picky eaters as kids, so as we all know with CFers they NEED to eat. Well when you have a CF kid that eats ONLY a hand full of things and when one of those things gets discontinued.... That can be a problem, so when Carson's Uncrustables grilled cheesed sandwiches got discontinued I was heartbroken. I know heartbroken over a silly sandwich, well I got even more heartbroken when I bought the sandwich punch thing that makes a sandwiches look just like one of the Uncrustables and he wouldn't even touch it. I even tried 5 different cheeses and still nothing, so anyways it was about 2 to 3 months with out "Sammies" and whenever I went to Walmart I would look for them and one day they had 17 boxes. I bought everyone and it was the best $40 I had ever spent.

I started to run low and was kind of getting worried that I was going to run out and I would have not found something else that Carson would eat that was " real " food like these silly sandwiches. But then the Sammie angle found some. My Mom's cousin that lives up in Washington just so happened to find some at her Walmart and had remembered my plea I had put on FB about friends and family to please look for these things whenever they were out shopping. So she found some and bought all 29 boxes that they had, and her parents were coming for a visit and said they would drop them off on their way home. So on Tuesday I got the best gift ever... 29 boxes of Sammies, but wait my Sammie angles were not done yet. After my Sammie deliverers left and headed home they thought they would stop off at the Woodburn Walmart just to see if they had any???? And they did!!! They had 3 CASES and a case had 10 boxes in them, so yet again my Mom's wonderful Aunt talked to a man there and was talking to him about saving them my Mom's cousin also called and talked to another man and told him our story and he said he would hold them for us. So when I found out what my family had done and I know that it might sound a little silly and I even laugh while I did it but... after I heard what they had done I truly had tears rolling down my face I was sooo happy. It was the most heart warming feeling and not only because of some silly sandwiches but that other people took their own time to make my days a little bit easier.

 It's a little crazy I know, but to have a child that WONT eat hardly anything let alone TRY anything, to have something that he will eat be taken way was devastating. But I think we will be fine for a while... because when we did get to Woodburn they didn't have 3 cases they had...... 5!!!! So I left with 50 boxes of Sammies and with 4 Sammies in a box I know have 200 more Sammies for Mr.Carson to enjoy. Now you can enjoy a couple pictures of Carson.

 "Mommy I so happy"

  "Sammie puzzle"

Stuff you just SHOULDN'T have to worry about!!!

It's hard not to look at these two and not smile.... It's hard not to look at these two a wonder what they are thinking about..... It's even harder to look at these two and know that they are just going about their day and that they have no clue when I look at them I want nothing more to be able to look at them and not worry about stuff I SHOULDN'T have to worry about!!!

 So Carson had a clinic appointment last week and I just soooo hate going it's like having to go to the principles office and knowing that you are going to get in trouble but not knowing quite what for. So some good news is that Carson didn't loose any weight but only gained a couple ounces. And so of course they started talking about that G-Tube again and they knew that I was not having it quite yet. Because as I explained to them is that right now 1. Carson just got off of a antibiotics 2. I feel like I'm working with a 1 year old with Carson on eating and trying new things, when actually I am working with not only that but the TERRIBLE twos. So they are working with me and Carson started taking a appetite stimulant called Periactin ( cyproheptadine ). And so far kind of ok???? Unfortunately Carson is my side effects kid and of course on day two of taking it he had diarrhea and threw up.Well now being on it a week he only did that, that one day. Now I don't know if my mind is playing tricks on me but it seems to have started working... so we shall see.

Brandon has clinic on the 23rd so we shall see what they think about him.... And you see this is what I'm talking about, No parent should dread having to go and see their kids Doctor FEARING that what they have been doing over the past 3 months has been wrong or told that they could have been doing better.
I shouldn't have to worry about how skinny or tall or even how much they are eating at this age. I shouldn't have to plead my case or be made to feel like if I don't make the choose they want me to make that I'm going about things the wrong way. And I sure in the HELL shouldn't have to worry about every signal sniffle, cough, runny nose or anyone else that might be sick that MIGHT have been around the boys. But......that is the hand I have been dealt and I'm up for it. Yes I might bitch and complain once in a while or keep it all in and then wish I had a punching bag that I could beat the crap out of. Because it's hard not to look at my sweet boys and know it's all for a GOOD reason. That this is a fight that I'm willing to kick it's ass any chance I get.

So again.... I CAN NOT look at these two and not smile and I know with all my heart that one day SOON I will NOT have to worry about stuff that I SHOULDN'T have to.
CF= CURE FOUND!!!!

A Everyday schedule vs A CF schedule

You know.. I knew when I was pregnant that I was going to have to change my daily schedule when the baby came. I knew things weren't going to be the same,  I knew that I was going to have to learn the different stages babies went through. I even knew EVERYTHING that I had read about on taking care of a baby didn't apply to us after we first heard the words Cystic Fibrosis. Or that most of it didn't apply to us, because a little still would. Now that the boys are older it has become a little more difficult. You see when the boys were babies it was tummy medicine (acid reflux) enzymes, bottles, diapers, and treatments and then the regular stuff bathing, playing.... I think that's all babies do? I don't remember ( hehehe ). Even when we started introducing foods it wasn't that bad, but now with the toddler thing coming into play with trying to mix everyday stuff like nap time, breakfast, lunch, dinner, brushing teeth, potty training, (ha ha) and even a descent bed time. Then trying to add in ALL of the CF stuff from enzymes, treatments making sure they eat high calorie stuff. Because you know I looked at the back of things to see how many calories, fats etc... were in things but it was to see how low all that stuff was and I still do that for my husband and myself but now I have two carts when I shop low cal & high cal.  And if their on any antibiotics and heaven for bid the antibiotic not be able to be given within so much time in between milk or vitamins. I don't even want to begin to think about how much harder it is going to be once their in school!!

 Right now I'm pulling my hair out and it could very well be because Carson is smack dab in the middle of his terrible two's and Brandon just thinks its fun to do whatever brother is doing. I don't???? I just hope I'm doing everything I can do to make sure they are going to be well rounded boys because I also know that every kid needs stauncher and discipline. It's HARD when your two year old throws a fit because he doesn't want to eat whatever you have made (let alone try it) because you might just say then " Fine then don't eat it but your not going to get anything else ". Well in their case I feel you can't do that because one you just gave them enzymes that cost money and if they don't get enough calories for the enzymes they poop and then they loose calories. So then it's a double edge sword because then offering them something that they will eat which is normally something that yes they can have like Cheetos or a Pop tart but when your trying to get them to try NEW stuff that isn't always snacky stuff but high calorie food... food.

So right now I'm stuck because there has to be a way to be a good parent and a good CF parent all at the same time... right???

I just wish I could figure it out because it's killing me trying to juggle it all and have a so called NORMAL life and raise good strong, healthy boys. Yet then I have the reality of the CF life hit me a crossed the face when one of them looses some weight or you feel like a bad mom when they won't eat what you have made and so you need to give them what we would call junk food, just to make sure they do eat something. Then feeling like you just gave in to them throwing a fit. Or just wondering if the way your trying to mix a everyday schedule with a CF schedule is the right way for your kids?

 I guess it's just a VERY fine line I'm going to have to learn how to walk.

We shall see????

So we went to see Steve the Eating Specialist on Thursday and we have seen him a couple of times with both Carson & Brandon. And no matter what I always walk out either with one of the boys eating good with him or I learn something new. Well this time both happened, Carson ate some stuff I didn't think he would and I learned a couple of things to look for when I am feeding Carson. Now as for Brandon..... he is doing fine with the eating I think he just plays off of Carson sometimes. But I guess my BIGGEST thing that happened was after we got home. The boys were hungry for lunch so I tried something that Steve told me to try with Cup of Noodles. So I made them took the noodles out and patted them dry, then put some on Carson's tray and immediately he said NO. So I sat down with him and started to eat them acting like I was a snake and the noodle was my tongue and just having FUN with the food. So he started playing with them and...... HE PUT ONE IN HIS MOUTH!!! and said " Oh yummy " ok so I didn't want to get to exited and and scare him. So I just said " Good job Buddy " gave him a high five and what do you know the little sticker ate two more. Now I know he only ate three noodles but I tried them and that's been our problem all along.

 Now three days later I think he is getting my head cold that I'm just getting over and he is not that interested in eating very much :( And to think I tried EVERYTHING to keep my germs away and off of things. But I guess it's bound to happen and I can't put them in a bubble like they tell me at the CF clinic. But you know it's one thing to try whatever when their out in public because there is only so much you can do. But when it's YOU that gives them something and your trying so hard to keep your self healthy, you just feel defeated. Now if I can only keep Brandon form getting it and then it coming around full circle again.

I'm just hoping that I can keep making and thinking of new ideas for Carson to eat. Like tonight he wanted ice cream and so he helped me make a milkshake. And not any old milkshake a GREEN milkshake, thank goodness for food coloring. So we shall see what come of all this new trying food thing for Carson we go see Steve again I think on the 14th and then CF clinic on Nov. 2nd? So I hope to up date soon with how things are going and PLEASE anyone who reads this and has any suggestions on different ideas or recipes for CFers feel free I'm always up for new things.

If it's not one thing it's another

 So Brandon had clinic on the 24th of Aug and Carson came along because he needed to get a sputum culture done because he had been on Cipro and had been done with his TOBI for 2 weeks. Brandon also had to get blood labs done. So anyways, everything went good at clinic I did have the Doc listen to Carson because he had been wheezy for a couple of days and it was right around this time of year last year that he was doing the same thing and they had put him on Flow vent and that has seemed to help. Brandon's blood work came back and he's vitamin K and D were low so we started some supplements for that. Carson finally had his own clinic appointment. on the 21st of this month and it went ok, he sounded good and his also had to get blood work done. His culture that they did on the 24th of Aug was clear so the Cipro & TOBI worked. On the other hand he did lose a little weight and for Carson that is not a really good thing because he has never lost weight he has either gained or maintained. So those UGLY words came out of the Doc's mouth...... G-Tube and not just for Carson, Brandon too??? So I don't know I truly believe that when Carson gets a little older he will start eating more. Tomorrow we are seeing the eating specialist and I'm hoping that he can help us, we have seen him a couple time before and Carson has always improved after seeing him.
 It is HARD with Carson because he only eats a limited variety of food. And if I try to give him ANYTHING new he won't even try it :( and it brakes my heart because this is just one more thing that CF throws at you. If this was any other kid that was not affected by CF I don't think that it would be a big deal, they would just say " It's just a phase don't worry about it " " He will eat when he's hungry ". Well you just can't do that with CF because when this happens it's FAILURE TO THRIVE!!!! Failure... Failure...  that's just what I feel like a FAILURE. I do everything I can to get Carson to eat and when he does we PARTY, and I think we are doing good and then I hear G-Tube. I had to do the NG-Tube for Brandon because he couldn't keep his bottles done until we got his acid reflux under control and that wasn't fun. So I'm hoping that meeting with the eating specialist will help. And I don't even know if this is ever considered when CF is involved but if you could have seen my Husband or myself when we were young we were sticks. My Mom couldn't even donate blood her senior year of high school because she didn't way 100 pounds people thought my sister was anorexic for the longest time because she was sooo thin. So how can you plump up kids that have CF when basically your fighting genes against genes???
 So I don't know, I just think that if I can just get Carson to just try something once he would like SO much more, because it has happened before with somethings that he just wouldn't try and I just shoved it in his mouth and he liked it. But it's just getting him to try it, I guess on a little more of a happier note Carson's blood work came back great so that's good. 
Well I hope to report more after we have out appointment tomorrow.NIGHT

Here we go!!!!!

So this is my first blog. Really don't know how to start, where to start. I guess the best way is to start at the very beginning. Start from the first moment we heard the words

"Cystic Fibrosis"

I had gone in for one of my routine blood draws while your pregnant and when the labs came back they called me to let me know that I had tested positive for the most common CF gene Delta F508. They told me not to be to concerned but I should have my husband tested to see if he was a carrier also. So we did just that and after about 2 weeks I think, he got a phone call telling him that he was not a carrier. So great we went on as normal and then 3 weeks before my due date on March 22, 2008 Carson Wyatt Otterson was born. He was sooo little weighing in at 5 lbs 8oz, after we got him home he started loosing weight and not eating very well at his first check up he was 5 lbs 2oz. We then got a phone call from Carson's pediatrician and they told us that his P.K.U test came back abnormal and we should have him checked out up at Doernbecher Children's Hospital and get a sweat test done. Which after they told us that I started looking things up and soon discovered what CF was. Not something you want to read about after having your first baby, but with Travis not being a carrier of the gene we weren't that worried.

So after the sweat test was done they told us that "No news is good news" and then on April 15th Travis got the phone call that changed our lives forever!!!! He was told that Carson had Cystic Fibrosis and at first Travis really didn't understand how Carson could have CF when he wasn't a carrier? But we would find out later that the Doctors office that did the test for Travis read the test WRONG!!! So then after Travis got the phone call about Carson Travis had to do what I think was the hardest thing he has ever had to do. He had to come home and tell me that our baby boy had CF, that our first born had a deadly genetic disease. And the moment Travis opened the front door I know something was wrong and I really don't remember much after that. I next thing I do remember is going to Doernbechers with my baby and having a Doctor tell me all this stuff about Cf and even from this day I could not tell you everything that came out of that Doctors mouth. All I knew was that this little baby just gave me a whole new out look on life.

So after all that we learned that there was a CF walk coming up on May 17th and we needed to get moving if we where going to get a team put together with there only being a month left until the walk. So by the POWER of family,friends and people we didn't even know, in just a months time we had a team "Team CW" and if memory serves me correctly we brought in just under $13,000.00!! It was amazing how it all happened I still don't know how it all came together. Then sadly almost a month later Carson was hospitalized for 2 weeks with a lung infection and some blockage. And that was an experience but they just keep telling us that after this stay we would be bring home a different baby. And they where right not only did he smile a whole lot more he just looked much healthier.

So then after we got home from the hospital we got right back to our normal lives. I worked a little bit here and there Travis had just gotten a new job right before Carson had been put in the hospital, so he was getting used to that. And then 3 months later just about the end of September very early October we found out that we were going to have our second baby! We were excited and very nervous all at the same time because of there being a 1 in 4 chance that this baby would have CF also. And we were even give the option to find out if this baby had CF before his was even born and we didn't because what was the point we knew we couldn't change it even if he did.

So a week before my due date on May 28th 2009 Brandon Dean Otterson was born! He was a little bigger then Carson weighing in at 6 lbs 10oz and even with the joy of a new baby being born there was still that offal voice in the back of my mind just screaming out wondering if he had CF. After he was born the nurses had taken him over to check him out ( you know the norm ) and as they were looking him over I just remember hearing them say " Do you see a hole? I don't see a hole, OH is that it? " As Travis is listening to this he asks them what they are talking about? And they told us that the Doctor would explain it to us. So the Doc comes in and tells us that Brandon has a Hypospadias, and a Hypospadias is when the opening of the urethra ( pee hole ) is under the penis rather than at its tip and that this the most common birth defects of baby boys and there is a chance of 1 in 125 boys to be born with this. As he is telling us this I'm thinking " Ok sooo this is it, this is something that can be fixed and all we need to make sure of is that he can pee out of it before we leave the hospital. And if he can't then it is just a little more serious " So almost 20 min later he has a wet diaper and we are very happy about that. But then the nurse asked us if he had pooped yet? and of course he hadn't so then that's what we are waiting on. And the day after he was born when he stilled hadn't pooped they started to worry, and when they found out that he could have CF they were really worried. Because newborns with CF can have a Meconium ileus ( Bowel Obstruction ) and so the day after my new baby was born I had to watch as they put a NG tube down his nose and then watch them take my baby off in an ambulance to the NICU. So as we followed the ambulance we just knew that our chances of Brandon having CF just went up.

So they ran the blood test for CF and before they even got the results back I knew that Brandon had CF, I knew the moment a little of the blockage came out and I got a smell of it that's all I needed. I knew that smell, it smelled like Carson's and my heart sank and I just said right there in the NICU "Brandon has CF, he has CF" and of course Travis looked at me and the nurse looked at me and said how do you know. I looked at them and said that poop smells like Carson's and the nurse said " Oh honey it probably smells bad because it's been up there for a while " HAHAHA, really, Okay and this is the same woman that after Brandon's test came back saying that he did have CF she was trying to give him his enzymes through his bottle. So after a two week stay in the NICU we finally got to take our baby home. He didn't have to have surgery he passed everything on his own, but he had to bring home the worse rash on his pour little bottom EVER!!!

But it doesn't stop there for our little Brandon, when he was about 2 months old he started throwing up and I mean straight up Exorcist throwing up. He then started loosing weight and ended up below the 3rd percentile for his age. So he was admitted for failure to thrive.... Failure to thrive what the hell was that it felt more like failure of being a parent. So he was in the hospital for a week and he had to get a NG tube, which is a feeding tube that went down his nose so whatever he didn't drink through his bottle we put down the tube. And before we left the hospital they should use how to place the tube just in case it came out.... CAME OUT!!! what did that mean it can't come out it WONT come out. Well about a week after we were home one morning he pulled it out!! I didn't know what to do, I called the pediatrician and they said they could put it back in but it would most likely cost us our $20 dollar copay. Well I figured I didn't want to pay someone money to do something that I knew how to do but really didn't want to do. So I called my Brother ( Bless his heart ) and he came over and held down his nephew while I quickly put this tube down my sons nose while trying not to look in to Brandon's eyes.

So after having this NG tube in for about a month and a half we got to take it out and finally Brandon got to have his surgery to corrected his Hypospadias and we had to watch and make sure that he ate because the CF doc's told me that if he goes below the 3rd percentile again we really needed to get him a G tube. Well just because my beloved Brandon likes to make his Mommy worry after his surgery he went right below again. So at a clinic visit I got told that he needed one and they would be calling me that following Monday to get him admitted because the said that was the fasted way to get him the G tube surgery and that admission would be about a 2 week stay. Well needless to say we didn't admit him he was about just under a month before he was going to be one and I wanted to see what he would do after we could start giving him whole milk.

Well to try and wrap this post up:

Carson is a very picky eater and by picky I mean won't even try anything. He also just got his vest for his treatments instead of us doing the pats and he is doing a wonderful job. He just got done with his first TOBI treatment along with Cipro a oral antibiotic to try and wipe out the Pseudomonas that he cultured. Right now too we switched him from Creon 12 to Zenpep 10 and he is doing really good with that he has gained just about 2 pounds since he was put on in a month ago. And is now above the 25th percentile for weight!!!

Brandon is a good eater so that makes it frustrating for me to have one that won't try anything and then one that will open his mouth for anything. Brandon too just got his vest for treatments, we still do the pats for him but I do put him on the vest when big brother is on his. We also just switched Brandon from the Creon 12 to the Zenpep 10, we have not gotten them yet but I think they will help him as well. I would also like to report that since we did wait to see what Brandon would do weight wise after he turned 1 and could eat more food and get his whole milk. He also is above the 25th percentile for weight. I even got their nutritionist to pay me a compliment on how well they were doing. HAHA just try an corner me again and tell me my son NEEDS something when your not with him 24/7.

Well I hope I got most of what has happened in the last two years on this roller coaster called CF. So I'm off to my next challenge with "A Day with Double Trouble"