A Diagnosis Does Not Define: Ronan Update

I can’t believe I’m starting to think about this boy's 1st birthday party, and let me tell you it’s going to be a party! Ten months of life with the little boy who has turned our world upside down.

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This month we had several appointments to see how Ronan has been developing in all areas. We saw a behavioral and developmental specialist, and across the board he is significantly behind. Every baby meets mile markers at their own pace however, his missed milestones are a direct result of his brain injury. Right now he’s still not able to sit up on his own, he struggles to hold toys, and holding his head up while laying on his belly is a continued battle. He doesn’t use his hands or arms in weight bearing, which has been one of the biggest things we’re working on. Currently he has three therapy sessions a week and we’re about to add another. The doctors want him getting as much early intervention as possible, and we’re fully on board.

Since Ronan’s trauma at birth he’s been “at risk” of cerebral palsy, according to the Neurologist. After his evaluation and a follow up appointment with Nero, they have confirmed that he does in fact have Cerebral Palsy. While that diagnosis is difficult to hear, we were expecting it, in some regard. We knew what to look for and we were seeing all the signs. Cerebral Palsy is a broad term that covers muscular issues due to neurological damage. To what extent our little Ronan has been touched by this, only time will tell.

Another obstical Ronan faces is Hypotonia, decreased muscle tone. Our bodies are pretty incredible, they do things without us even knowing it. So when something involuntary is off, it affects many areas of life. Did you know it takes 70 muscles to swallow? Yup, 70! Do you tell those muscles what to do, how to function, how to swallow? Nope, you don’t. You came out knowing how to do that all on your own. Ronan however, doesn’t have the coordination or strength to make those muscles do what they're naturally supposed to do. He doesn’t have the strength to support his weight and carrie out simple tasks. Much of this is due to hypotonia, but we’re hoping and praying through all the therapies he’s getting this will continue to improve.

In a nutshell, physically he has a long way to go. We’re looking at the possibility of some pretty severe physical disabilities. We don’t know when and if he will start to meet mile markers. Will he crawl, will he walk, will he run around with his big sister? We don’t know. That’s a tough pill to swallow, but what we know is that our little boy has fought and pushed through so many obstacles; we’re not giving up hope now. Most importantly, we know God has a very special plan for our handsome, droopy cheeked, blue eyed baby boy!

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We are continually thankful for the the fact that there has been absolutely no sign of cognitive developmental issues in Ronan. He has turned into a jolly little fellow who giggles and babbles like a normal 10 month old should. He started saying “Da da” this month, and he’s in full blown “stranger danger” mode around anyone who’s not family. He laughs out loud, he loves to play with his sister, and he can keep himself occupied with toys. This was always our biggest prayer, that he would know who we are and ultimately come to know Jesus.

He’s made huge leaps in the eating department, he gets two feeds by mouth daily! He loves food, but we’re working with some sensory issues there too. We’re hoping to have another swallow study done in May, so keep that in your prayers!

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Emotionally, it’s been a more difficult month for me personally. The evaluations, doctor appointments, his official diagnosis, and the over all reality check hit me harder that I expected. Having a baby in general is full of ups and downs, emotions are everywhere and hormones have a mind of their own. Typically these things are worked out in the weeks and months after birth; a woman’s body is some sort of incredible when it comes to childbirth. Our experience was a little different. Obviously we spent weeks in the hospital, but on top of that Ronan was born two days before our wedding season started (for those that don't know, we are wedding photographers). Like it or not, we had to go to work. While this did serve as a welcomed distraction from reality, I feel now that it hindered me from actually going through the emotions I needed to deal with from his birth. Well, they're here now, but that’s another post for another day. Right now I do my best to take one day at a time, embrace the new normal, and see each day for the gift it is. So pretty much, I’m surviving just like any other mom ;)

Ronan continues to surprise us, as do all of you. Your continued support and encouragement has blessed our hearts! We appreciate all your prayers, keep them up!