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Feb 26, 2018 Latest post:
14 hours ago
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. We have felt so loved and supported during this journey. Thank you for visiting and everything you are doing to support us.
As many of you know, little Logan was diagnosed last week with a Posterior Fossa tumor around his brainstem. He is currently in Nationwide Children's Hospital surrounded by family who love him very much! While it wasn't the 1st birthday party we all had in mind, Logan was able to celebrate his 1st birthday this weekend with balloons, gifts, dinosaurs, fun with family and of course a face dive into a scrumptious cupcake!
The journey of how 4 words changed our lives: Mid January, Logan started tilting his head to the right and seemed to have difficulty turning his head to the right. Travis took him to the doctor on January 20th and the pediatrician thought it was just from teething. I had been doing my own research and truly didn't believe it was teething. I really thought he had acute torticollis (it was during this that I came across the words tumor in the posterior fossa). I showed some pictures to my wonderful colleagues and they agreed and told me to follow my gut and take him back to the doctor. So in true Jessica fashion, I pretty much diagnosed my son, told the doctor that I thought it was torticollis and that he needed to be seen again. January 26th we were back at the doctor and he agreed with torticollis and suggested Logan go for a PT eval.
February 1st we went for a PT eval and he was ordered weekly physical therapy and he started PT on February 5th.
February 9th I still wasn't feeling "right" about everything because I thought it was very weird that this head tilt just started suddenly. So I took him back to the doctor. The doctor didn't seem overly concerned and when I suggested he go for a scan to see why it was happening he said we didn't want to jump to that. We could start with having his eyes checked first to see if there was a visual reason if we wanted. Of course we said yes. At this appointment he also said, "It's not like it's a tumor. He's developing fine and hasn't shown any regression."
February 12th he threw up after PT.
February 15th he threw up while drinking his morning bottle. We then took him to his ophthalmology appointment later that morning. His eyes checked out fine so I started researching again- this time acute torticollis and vomiting.
He threw up February 15th in the evening, February 16th after am bottle and breakfast, February 18th after am bottle, February 19th after am bottle. We then took him back to the doctor after my research turned up, again, that torticollis and vomiting in the morning can be symptoms of a brain tumor. The dr came in and immediately asked how Logan's torticollis was and I said I thought his tilt was improving. He said he was concerned when we came in with him throwing up after having just been diagnosed with torticollis. But thought since the torticollis was improving instead of worsening, the vomiting was just a bug but to keep an eye on him that week.
He threw up February 21st after dinner and February 22nd as soon as I got him out of bed. That day Travis and I decided that's it, we are going to children's and we may be the foolish parents requesting for their baby's head to be checked but then at least we would have a peace of mind.
We went to Lewis Center Children's ER and the doctor agreed to a CT but again didn't really seem concern. After holding my baby down, with him screaming while they did a CT, we were back in the room waiting. When the doctor walked in, she briefly looked at me and looked away and sat and said, "I have bad news." It seemed like a dream, I could hear her talking but all I could think of was "there is no that we are talking about this amazing sweet baby sleeping in my arms." She told us there was a mass and we needed to go downtown, they knew we were coming, she had already talked to neurology and they were waiting for us.
Our life changed in an instant. I joked about being right about the torticollis and the dr being wrong. How I would give anything to have been wrong. I wish the dr had been right- I wish that it would've just been teething. But I can't change it, I can't fix this for Logan and as a momma that is really hard to swallow. I can't help my baby, all I can do, and all I can ask you to do, is to pray.