Wednesday, August 27, 2014

Finn's Story

I have many posts about Finn and his updates but I thought it'd be nice to have his whole journey down in one place. So here is his story, more like our story.

Finn was born on a sunny Saturday morning in April of 2012. He was a healthy 8 pound baby with no problems and no complications. I'll never forget the first time I saw his squishy face, I just knew we were going to be best friends and that he was special. At 6 weeks old he started crying. A LOT. He cried everyday for many hours regardless of what we did for him. His pediatrician chalked it up to colic, whatever that really is.

When Finn was 3 months old we started to notice he wasn't progressing much. He couldn't hold his head up at this point, sitting up or on his belly. His eyes would cross often and he rarely smiled or looked at us. And all at once the insanity began. His pediatrician was just as concerned as we were so she sent us to multiple specialists and set up many tests. Over the course of 4 or 5 months we went to a neurologist, muscular neurologist, two geneticists, two eye doctors, eye test specialist and many physical therapists. We have done an MRI, multiple EEGs which tests epileptic activity, a spinal tap, muscle biopsy, hundreds of blood tests to check for syndromes and genetic conditions and an eye test. Every test came back normal except for his EEG which came back abnormal but inconclusive. We noticed Finn making strange startling movements. We came to the conclusion that Finn was having some kind of seizure. The doctors couldn't confirm this but we felt this was the root of all his issues.

The first year of Finn's life were hard on us. We were at some kind of appointment at least 3 times a week. Along with his incessant crying, most days we just barely got by. We were afraid, we didn't know what was wrong with our baby. We didn't know if his life was in jeopardy or if he'd ever be able to walk, talk or see. As time has gone on Finn's crying spells have stopped for the most part, he is progressing at a slow rate, but hey progress is progress. He can now hold his head upright, sit upright with assistance, roll from back to tummy, has much better use of his hands and legs, babbles and makes lots of sounds and he seems more aware of his surroundings and the people around him. We are so grateful for these little milestones he's hit recently. With the help of his physical, occupational and visual therapists, Finn is making great improvements.

We took a nice long break from testing and specialists but we are now jumping back on the test train. We've noticed Finn making strange movements, especially at night when he's trying to fall asleep. Also, now that he is two his doctor would like another MRI done of his brain because it is more mature and would be able to tell us more now that he's older. He is currently having a 72 hour in home EEG which monitors brain waves and any potential seizure activity. This coming Friday Finn will be getting the MRI. He will also be getting some blood work done to test for some other genetic syndromes as well as a hip x-ray to make sure his hip sockets are setting correctly. Testing is hard and can be taxing on us emotionally and physically but we are hoping to get some answers and make sure our Finny is doing alright. And if we don't get answers then that's ok too. Finn will be Finn and we love him the way he is. I tell him all the time he's a magical guy. My little Magic Finn. He brings so much joy to our lives and the lives of others around him. He has a very special spirit about him as all special needs people do.

We are so grateful for the love and support of those around us and those far away who have prayed for and thought of Finn. Prayer is powerful stuff and God's plan is perfect. I thank Him everyday for giving me this sweet boy. I truly NEED him, Finn is my rock.

Love you little man, thanks for being you.

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  1. Finn is so sweet. I have been reading your blog since right before you had him, and I've enjoyed watching him grow. I know it's been really hard at times for you guys as parents, but you do such a wonderful job. I'll be praying for Finn's upcoming tests!
    P.S. Finn is such a great name! I recently had my third little boy and we named him Finnley... but we call him Finn. :)

  2. You are an amazing mom. Finn is lucky to have you. Thank you for sharing. I can't even imagine the heartache and turmoil you have gone through but I love your positive outlook and how you treat him. So tender and sweet. Thanks for the words they inspired me to love my Calvin more and be grateful for all things.

  3. You were chosen as the perfect parents for this little man. Blessings are upon your family.

  4. I just stumbled across this blog post and it really touched my heart. I have a little boy with special needs too, except mine is Flynn:) I just wanted to say your son is so beautiful. Thank you for sharing his story.

  5. I just stumbled across this blog post and it really touched my heart. I have a little boy with special needs too, except mine is Flynn:) I just wanted to say your son is so beautiful. Thank you for sharing his story.