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.

My Son’s Cystic Fibrosis Journey Pt 1

 

My beautiful son grew in my tummy for more than 9 months. I saved every penny for him. I ate the healthiest foods. I sang to him. I made him a nice nursery. I made sure he would have everything he could ever need. I dreamed of raising my boy to love sports,the outdoors and never have to worry too much about his health. My heart grew each month but it was nothing compared to when I finally got to hold my baby boy. (after a quite horrible labor and delivery, don’t get me started) It felt like nothing else could ever matter as much as him ever again. He was perfect when he was born. He was 9lbs and 10 oz with plenty of hair. We went to our first Pediatrician visit and the Doctor  told us we may have the most perfect baby God ever made.He was seemingly in the best health possible. The few weeks following were rough. My baby, Jude, couldn’t go an hour before he showed signs of hunger. I was worried I wasn’t producing enough milk for him as I had been breastfeeding since he was born. He wasn’t gaining much weight. I was blaming myself. . Then I got a phone call. A phone call that put me on a path I hadn’t prepared myself for. It’s not the path I would wish upon anyone, let alone my own son. Regardless, it is a path, it is a life. The Doctor told me that my son was very likely to have Cystic Fibrosis. If you are unfamiliar with the disease if is an inherited life-threatening disorder that damages the lungs and digestive system. This explained his extreme hunger so my guilt subsided. I was familiar with the disease, not completely clueless. (Sometimes ignorance is bliss) I cried for pretty much an entire day cradling Jude in my arms praying that maybe he didn’t really have it. Somehow I knew he did. After getting further testing, I got the second call confirming my fears: He has CF and its on the severe side. I was terrified for our future. Suddenly my dreams of having a healthy normal child faded and were replaced with Dr visits and hospital rooms. I was terrified of the financial strain we were about to get into. I have great disdain for our health system. It’s broken and the cost is impossible to keep up with.People keep telling me that he’s going to be ok, but I know that’s not true. His life will be hard. He will be different and I pray to God that he will be strong.  There will be so many times that he’ll be in pain and there will be nothing I can do about it. Treatments are starting soon and my normal baby won’t feel normal to me anymore. In the days after going to the CF clinic to see the doc and the nutritionist Jude has begun coughing and breathing heavily.The reality of his disease is starting to hit me. When I see him struggle to breathe I wish I could give him my own breath and suffer for him. It’s a helpless feeling. Like I said before, it’s not the path I would have chosen for him but I believe this little one is going to lead a special life. My family is blessed that he was diagnosed so early, at 5 weeks old. The research is looking more and more hopeful as better and better drugs to treat CF come out. After getting all my crying out, I’ve decided that I have no choice but to be strong for him. No more crying. It’s in Gods hands and I fully trust him. It’s not gonna be easy, but nothing worth doing ever is. God has a plan for Jude and our family. I will write updates on Jude here every so often. His disease is not curable yet but it is treatable. We love his team of Doctors so far and believe he is going to live an amazing life!!

 

Its gonna be a great adventure.