Finnley's Story

     Finnley was born in March of 2020. Pre pandemic baby. Labor was a struggle and they ended up having to suction him out and the cord was around his neck. He was blue but by the time he was on my chest he was making sounds. And he had the sweetest pouty lip. During our stay he did have some jaundice, but nothing major.

     Breast feeding was a struggle as he wouldn't latch. We ended up switching to bottles and I pumped. As the weeks went on, I noticed that he had a very wobbly head and HATED tummy time. At 6 months old his Doctor wrote a referral to see a Neurologist in Rochester MN. After that initial appointment the neurologist put in orders for an MRI and EMG. Those were done just after his first birthday. The MRI showed that his brain was not fully formed with excess fluid. We then had the Chromosomal Microarray test done. That came back with the result of possible autosomal recessive disorder and UPD of chromosome 22 (both homologues inherited from the same parent). We then did a test by GenX, of his father and myself and found out I am the carrier. 

     His seizures started when he was 14 months old. Currently they are under control with medications. When his seizure type changed, he was then diagnosed with Lennox-Gastaut Syndrome.

     We have been getting Finnley into any therapy that we can-- P.T. O.T. Speech, and Vision. Going places can be a struggle. Diaper changes on the floor are normal for us. I am his primary caretaker, and some tasks are physically challenging.

     His brother and sister are very understanding for their ages, but it is really hard to not give them any real answers when they ask what he will be like in 5 or 10 years. For now, we are enjoying the laughs and smiles he gives us. Sadly there is nothing else for us to do until we have funding.