So It Begins…

So a little background on our story first…

Pregnancy and Labor were completely normal. Went full term. Natural delivery. Nothing irregular. After 14 hours, “Radical RAD” was born.

I first noticed that our son’s head was a little more flat than normal when he was about a month old. We started making sure we rotated him if he was laying on his back playing. He absolutely LOVED sleeping on his back. We called it the “Touchdown” position. Arms straight up over his head, completely flat on his back. And he was a great baby. I mean, he slept through the night very early on. It was a blessing, and although we didn’t realize it at the time, it was also contributing to his condition.

At his 2 month checkup, I brought our son’s head shape to his Pedi’s attention. He agreed that it did look more flat than normal, but felt that it was nothing that we should be concerned about. He made sure we were doing the appropriate amount of tummy time, rotating him on his sides, and keeping him off his head whenever possible. All things that we were doing already. We all thought his head would round out as he started rolling around, which is what normally happens.

I went back to work when he was 13 weeks old. It was a couple of weeks before my mom saw him. When she did, she felt that our Ryder’s head was not improving with the therapy we had been doing, and in fact was getting worse. Now we could tell that his head wasn’t getting better, but couldn’t necessarily tell that it was getting worse.

That night, I sent some pictures to my best friend, who also happened to be a Pediatric ICU Nurse. She agreed that it was concerning and we should see a doctor as soon as possible. We made an appointment with his Pedi the next morning.

He agreed that his head was worse, but what was even more concerning to him was that he was unable to feel his “soft spot” at the front of his head. He sent us to see a specialist at Dell Children’s Hospital. It took 3 weeks to get in, and were the longest three weeks of our lives. We were examined at Dell and they were also unable to feel his “soft spot,” but were not overly concerned seeing as how he was developing and growing appropriately. She did recommend a cranial helmet and a follow up in 3 months to re-examine his soft spot.

We got into a helmet clinic (we chose StarBand – more on that later) within a few days. They scanned him and agreed that he would be a good candidate for a helmet. The technician also said that she COULD feel his “soft spot.” She said it was SUPER tiny, but that it shouldn’t be anything to worry about.

And so here we are. We will be getting his helmet in a couple of days and it is a bittersweet thing. I am so glad that we are getting him fixed, and I know that he will never remember it and it won’t hurt him at all. However, I hate that he will have to wear one at all. I am grateful that all it is, is a helmet and that it could be MUCH, MUCH worse.

I hope that you find this blog helpful and a sense of support as well. Thank you for sharing in this journey with us and I am here to help in any way possible! img_7557

 

 

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