Dec 15, 2021 Latest post:
Mar 21, 2023
Jamyn was born January 25, 2021. At first we (his parents) thought all was well, but it didn’t take long before we became worried. He had a hard time drinking his bottle, never cried, hardly even woke up! By time he was 6 weeks old we were very worried. He was still wearing newborn clothes and slept all the time! One night he started choking every time he took a drink and then.. the seizures started.. We had lights and sirens to TriCities and a helicopter ride to Seattle! We spent 8 days there and came home with him on a feeding tube and diagnoses of bilateral Polymicrogyria (many small bumps on the brain), epilepsy and 1p36 deletion syndrome (part of the 36th section of the p arm of the first chromosome is missing). Because his syndrome is coupled with the Polymicrogyria the doctors give him a slim chance of every walking or talking. By August he was smiling, reaching for things, loved watching his siblings, was starting to eat baby food and was taking at least half his feeds by mouth. And we had settled into a routine of therapy appointments twice a week with various other appointments mixed in. But then the smiles stopped coming and the seizures started again… Another hospital stay gave us a diagnosis of Infantile Spasms (West Syndrome), a very serious form of epilepsy. He’s undergone 3 different treatments for this. Finally, after 2 1/2 months, we saw him smile again! The spasms and seizures have lessened drastically in intensity and frequency. We are now waiting on EEG results to give us more of an idea where we are at with the Infantile spasms. As long as he still has the spasms going on he will not develop beyond what he is doing now! Which he regressed a lot when it was at its worse. So right now he smiles, kicks, watches us sometimes! He uses his arms very little, we are unsure at this point how much he can see anymore, and he takes very little food by mouth . This is the last 10 months in a nutshell, and I’ll post an entry when we get the EEG results from the EEG he had last week.