Good evening!! I am running on 2 hours of sleep in the last 24 hours, so I hope this all makes sense :)
Yesterday morning, Dylan woke up limping on his foot. I thought it was strange, but figured he would be ok. When he woke up from nap, he was still limping and that is when I started to pay attention a little more. I also noticed that Dylan lost his grip a few times that night on his right side. My sister Mandy discussed the symptoms with the docs in her ER and they said that we should go in. So off we went.....to my favorite place in the whole world! After getting a clear CT, the neurologist wanted to keep us overnight to get an EEG and an MRI. The EEG showed that Dylan had a lot of abnormal activity on both sides of his brain also indicating seizure activity. We knew about the seizure activity, but we did not know exactly what was causing it....until we got the MRI results.
So there is good news and bad news. The good news is that there isn't any new damage to his brain. The bad news is that there is old damage in his brain caused either during birth or from treatments, most likely treatments. That scar tissue is what is causing the irregularities in his brain that are causing seizures. There is no reversing the damage that has been done. The only thing we can do is try to prevent the seizures from occurring. We started him on his med and that should hopefully keep the seizures at bay. His leg injury was also most likely an old nerve injury that was made worse by a seizure. The doc wants him to do physical therapy and maybe wear a brace to help with the problem but it will most likely never heal all the way. So all of this is not really new information, but it validates what we knew all along. Now his MRI validates it. It also takes away any hope that he will get better.... which is hard to deal with. We know that God is sovereign over every detail and He has made Dylan in His image and likeness. Dylan is exactly how He wants him to be. We are so thankful there are no tumors or life threatening issues.... Just a little bump in the process. Tomorrow we starts a new adventure with seizure medicine. The meds can have side effects such as moodiness, irritability, aggressive behavior, and sleepiness. We will go in every 2-3 months to test his blood and see if his dose needs to be changed. We are praising God for protecting Dylan from other cancers and tumors. Please pray for us as this is a lot of news to take in....to process. On one hand we are thankful and relieved, and on the other hand, we are disheartened that Dylan's brain is damaged. We are unsure of what the future holds for Dylan, but we know that the Lord has big plans for him. We are asking for His guidance on how to help Dylan be the best he can be while allowing him to be himself. He is such a huge blessing to us and we have some much to be thankful for.
Thank you for continuing this journey with us!!