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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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.