Jude’s Journey Part 5

We took Jude to his 1st Baseball game a couple of weeks ago and he had so much fun, mostly people watching. A few days later Jude and I both ended up with Sinus infections. I freaked out and took him to Urgent Care when he woke up with a runny nose. I know it doesn’t seem like a big deal but when you have a child with CF, you don’t know what you should panic over when they are this little. His little nose was runny and he just did not seem himself. I took us to a CareNow and the Dr saw us at the same time. She told me not to worry, that she would prescribe us both antibiotics. Two days later we took Jude to his CF Clinic visit and they confirmed that Jude would be ok. They said its normal in the change of seasons for babies in general to get runny noses. Crisis Averted!

Jude won a photo contest that raised money for CF research! He’s the Grand Prize winner in the middle. We won 2 airfaire tickets!

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We went to Miami, Florida for a week. Jude loved pretty much every minute of it. He was good on the plane and he barely cried all week. There was just too much for him to see to be grumpy! His treatments were easy because his Dr prescribed him a travel inhaler for one of his treatments. It takes way less time with the inhaler so we had more time to have fun. The Salty air was great for his lungs and I could tell he felt his best.

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Jude’s Journey 4

When I look at my son its hard for me to believe that he has a chronic illness. He is so beautiful and full of spirit for everyone he meets. He looks so happy and healthy. I was starting to think I may be a little bit in denial about his illness. His enzymes and treatments have become normal so I don’t think twice about it or complain.

I took my son to church camp with me and I couldnt slip further into denial as many adults asked me about his health and how they are treating it. Some thought there were no treatments unless he got sick and some thought he just had one treatment. They told me what a great mom Iam for keeping him healthy and how strong Iam for staying positive but the truth is Im still pretty scared. The future is unknown to me. I see it as selfish if I feel sorry for myself over it. He is the one who has CF, not me. I have no right to feel sorry for myself.

(Books given to Jude at Camp)

There was a camper at camp that I have known for a long time that has CF. Him and my son have to stay away from eachother. When the Dr said he had to stay 6 feet from others with Cf it seemed reasonable but in real life it was painful. I had to say hello to him from a distance even though I wanted to let him hold Jude and play with him. I wanted to give him a big hug and tell him how brave I think he is. I wanted to give him some hope because he seemed particularly beat down this year. It makes me sad knowing that Jude cannot have the commraderie of having a friend going through the same thing as him, it makes me angry. Most people tell me “oh hes going to be so healthy and he is going to be just fine”. I know he will be fine but I also know that life will be hard for him. My church does prayers of administration. They are like prayers on steroids and ones I have gotten have truly changed my life. Through the years I know Jude will need them to stay strong. I know that with prayer, enzymes, breathing treatments, the vest when he gets it and the support of our families and church families will all work together to form a wonderful boy with ambition and drive despite his illness.


Jude is 5 months old today and healthy as a horse. Hes made friends at church and he loves to hear us sing hyms. He doesnt seem to mind his treatments and takes his enzymes with no problem. He started eating baby food and rice cereal. He likes every veggie he has tried! He has put on weight and is no longer underweight!

To find out more about CF and how you can help click here: https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/

Thanks for reading! I hope you have a wonderful day!

Carson Dickens 

My Sons Cystic Fibrosis Journey Pt 2

3 weeks ago my husband and I found out our 5 week old baby Jude has Cystic Fibrosis. We went to a CF Clinic and spoke to several different Drs, did a fecal exam and sweat test. The Dietitian had us start salting and adding extra vitamins and formula to his bottles, easy enough. Both tests came back high-positive for Cystic Fibrosis a few days after the visit. When I got the call with the results, I felt like I had lost something. Something I have been working hard to get for a long time. My dream of having a big family just got a lot more complicated. I didn’t have a traditional family growing up. I was an only child of divorced parents. My dream was to create a beautiful home and have a big family to share it with. My husband and I have done everything right.We had a fairytale courtship and fell in love within a few dates. We were together a few years, went though a lot together and got married. We bought a house a year after being married. We filled the house with everything we could possibly want and more. We dreamed of the ideal family life. I learned how to bake the best chocolate chip cookies, as if that were somehow a part of a great family. I felt like a big family was an attainable dream. I’ve always wanted to adopt but after having Jude I want another child that’s my own.I wanted Jude to have a sibling to grow up with.  I wanted 3 children at the least. I cannot help but feel like I’ve lost that. The chance of us having another child with CF is 1 in 4. I do not want to take that risk and I do not want to to invitro treatment to have another baby. If God intended us to only have Jude,we need to accept that. We are just so heartbroken right now. We are afraid of the future. The last thing we want is for our son to be sick. My heart is breaking for Jude. It’s unfair to him.

With that said, I’m hopeful for Jude’s Future. He’s getting preventative treatments to prolong his life. He will be 2 months old in a few days!

We went to Jude’s 2nd Cystic Fibrosis visit and this is where is really gets to be alot for us. We saw several different drs and nurses and even a social worker (who was useless and did not want to help us or listen to us) We learned details about his disease and how we would begin treatments. For now, he was put on enzymes to help his pancreas digest his proteins and fats better. We learned that his pancreas is insufficient, which explains his extreme hunger. I had been letting him eat whenever he wanted. He’d been eating several bottles of formula (with extra half scoop per serving to up calories). We were pleased to learn at this visit that despite his pancreas, he gained 2 pounds! I must be doing something right. Even though he gained weight he still has to start on enzymes so he won’t be so hungry all the time and he can digest his food better. We were taught how to give enzymes before he eats. We learned about clinical trials and the fact that patients with CF are living longer and longer because of new drugs and early diagnoses. We were given a book from a drug company called “Who am I?” which is an adorable book about a day in the life of a child with CF. We were taught how to do CPT on Jude, which is an airway clearance routine that must be done once a day.We spent 5 hours in the CF clinic waiting for each Dr to make their rounds. We will have to go to the clinic every month until he is a year old and every 3 months after that. Assuming he stays well, it doesn’t seem as doomed and debilitating as I though it would be. They handed us a huge notebook filled with things we would need to keep as reference and things we will need to keep track of. It’s all a little overwheming.

 

He’s been on enzymes for 2 days now and he seems to be going longer between feedings. I was feeding him every 30 minutes but now its sometimes over an hour!

Jude is such a sweet little baby and seems so healthy and happy. You would never know that anything is wrong.

Body Positivity

“In a society that profits from your self-doubt, liking yourself is a rebellious act”

Women seem to constantly be talking about their bodies as if it defines who they are. We call ourselves fat or ugly like it’s going out of style. Thinner women always complain that they are fat around me and in my mind its a huge insult to me. So if you think you are fat then I must be as big as a house, right? I wish I didn’t take it that way but I do. When are us women going to stop degrading ourselves to each other? Its not helping anyone. It’s definitely not helping the feminist agenda either. The product of this self hate is that we push our own insecurities to the next generation and now it’s part of the circle of life to hate our bodies.

 

I’ve struggled with my weight since I was five years old. I remember the first time I thought of myself as “fat”. It was my 1st day of kindergarten. I was wearing a green gingham dress with my long blonde hair pulled back into a pony. It was the first time I saw myself as an object, something separate from my thoughts. I was too young to figure out what I would do about it so I did nothing but get depressed. As I got older I started to do things like skip meals and binge. It wasn’t until middle school that it became a real problem. The girls were cruel to me. The popular girls wanted nothing more than to knock me down. I had something they wanted: I could sing and I could sing well. At my middle school if you weren’t in choir and glee club you were nobody. They had something I wanted too. I wanted to be thin, to be normal. Well, I was barely overweight but I wanted to be underweight. I wanted the boys in choir to lift me with ease even though my dance partner never seemed to have an issue lifting me. Having a good voice didn’t matter because I didn’t have the looks to go with it. Something had to change, and it did. It ruined my life in fact. First, I started making myself throw up every meal. Then that got to be too much. It was hard to hide and I was already losing my friends due to my sullenness. Throwing up wasn’t working so I stopped eating completely. It was fine for a couple of weeks until I found that I could no longer sleep at night. Days of no eating or sleeping flew by. I began to think I was invincible and I was actually losing weight. No one seemed to notice so I kept going until they did. The popular girls started treating me a little bit better. But by then I didn’t give a flying f*** about those girls. I was gaining confidence and didn’t care about what they had to say one bit. My confidence grew and grew until I suffered an awful psychotic break. It was too much for my body and it was about to give out. I had gone far too long without sleeping or eating. After all that, the 1st semester of 7th grade, everything is a blur. My memories are stitched together by what my friends tell me happened.  I cannot remember any of it but I know it was bad. I know I was psychotic for years. After my first episode I was in the mental hospital for I don’t know how long. All I remember is being given love notes and having a little affair with my roommate in the hospital. I was shoved pills to treat bipolar disorder down my throat. Could no Dr figure out that I wasn’t eating and sleeping? That can’t make a person go nuts can it. Yes it can and It should. I believe that after being started on a treatment plan for bipolar, it caused me to never get better. I was eating and sleeping but I was still psychotic.

I had several other episodes but I can’t say when each one happened.

I tried to kill myself at least two times by over dose and I also cut up my arms and legs.

I followed Pro- Ana Mia blogs religiously

I starved myself off an on but I never stopped the bulimia…in fact I started abusing laxatives as well.

 

At one point I told a family member and asked them to help me but they said I was just going through a phase and refused to get me any help. Apparently I was never thin enough to warrant worry, so I never stopped.

I remember bits and pieces of high school but they are out of order. I think all of the meds I was on has screwed with my memory.

It wasn’t until I met Steven, my future husband that I realized my worth. Our courtship is a long story so I won’t bore you with the details. Bottom line is that he did alot of work to get me to stop the bulimia and the cutting. When we moved in together he made me stop taking the pills. When they were out of my system, I realized that I was a very sick, delusional person while taking them. Flash forward 6 years and I haven’t had an episode since and haven’t needed psychiatric drugs. My husband saved me from a life of sickness and I’m forever grateful that he came along.

 

What I’m trying to get to is this………

Are your looks really worth destroying your body and mind over? Don’t waste 8 years of your life over it like I have. It’s miserable.

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We all need to get over ourselves and stop worrying so much about our looks and our weight because it doesn’t matter. Be a rebel and love yourself. Being happy should be the priority not “Ill be happy when my skin clears up or I lose 15 pounds.” You will never be happy with that kind of thinking. Surround yourself with people who love you for you and you won’t need to worry about your looks. Tell yourself that you are beautiful and maybe you will believe it someday. I can’t lie and say that I’m happy with my looks because I’m not. It took years to drill that negativity into my brain and it’s gonna take some time to get over it, but my self hate seems to fade every day. I have a son now to worry about and the last thing he needs is for me to lack confidence.

Here’s to the body positivity  movement! May we all accept ourselves a little more each day.  .

Homemade Happiness

I’m Carson. My best friend and partner in life Steven and I just had our first baby! I’m a new mom on a budget! My goal is to help provide for my family by couponing, finding freebies and winning prizes to help us live like kings! (in addition to working of course) I want to also create an organized functional home to keep everyone happy, cook healthy meals and make sure we all get good exercise Here’s to the home being where we can explore and truly be relaxed. Here’s to choosing to be happy and doing things to better ourselves everyday!

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Hi :)

I’m Carson and this is my lifestyle blog:)

I’m married to an amazing man and about to have a new addition to my family-a little baby boy!!! This is my first kid so I have no idea what to expect!

Follow me on my journey through motherhood and all the other things that life brings!

Part of being a new mom is learning how to live on a lower budget and still live well, so here I will be posting all of the freebies I find, the things I buy that were worth the money and how to coupon. candsrainbowwall2