May 29, 2019 Latest post:
Jun 25, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
For us, Romeo’s story began in May of 2015 when he was fighting for his life after suffering a massive non-accidental traumatic brain injury. He was rushed to surgery upon arrival in which the neurosurgeon had to remove part of his skull to allow for the significant swelling of his brain. His heart stopped three different times, his body was failing him...but God had other plans for this little one. Due to the trauma that was done, Romeo suffered multiple brain bleeds, skull fractures, retinal hemorrhages, massive swelling, a stroke, and uncontrollable seizures. He seized continuously for a total of 3 days and they had to keep him on life support in a medically induced coma and heavy sedation to keep seizures at bay. His outlook seemed grim. The doctors were not certain if he would be able to ever walk, crawl, sit, eat by mouth, see, or interact with other people ever again. The damage done to his brain was substantial.
He spent a total of 5 months in the hospital recovering and defied all odds. When we took him home, he was unable to sit up, roll over, talk, walk, crawl or eat by mouth. This, however did not break his spirit. He had the most contagious smile that made people fall in love with him instantly.
During his first year with us, he learned how to sit up, roll over, eat by mouth, crawl, and eventually walk/run. He did not let his disability slow him down. He loves to dance, laugh, and make people smile. Everyone who comes in contact with Romeo cant help but fall head over heels.
After about a year, he started having seizures again. His one medication stopped working. The doctors predicted that as he continued to grow, so would his seizures. They would become more frequent, worsen, and be difficult to control. We prepared our mind (or so we thought) for that possibility, but were hoping for the best. Romeo had surprised the doctors before by his recovery, so he could do it again. Unfortunately, they were right. Romeo continued having seizures despite maxing out on his one medication. So he was prescribed more epilepsy medicine...and more, and more..each with its own side effects. At one point, being maxed out on 5 different seizure medications, all having sedative effects and all seeming to not help his seizures, we began to look at other options.
This is when his neurosurgeon suggested a hemispherectomy, in which he would remove Romeo’s damaged temporal lobe and then permanently disconnect the corpus callosum. This would prevent communication between the left and right side of the brain in hopes to significantly decrease his seizures activity and allow for cognitive improvement and development. The neurosurgeon stated that his right brain will continue to seize, but his left brain and his body wouldn’t know, preventing further developmental delay or damage to his left side. This rare major brain surgery comes with many risks...left sided paralysis being one of them. However, it would give Romeo a chance at life again by improving his cognitive status in which he would be able to participate in school and life in general. So after much thought, prayer, discussion, and tears, we decided to go ahead with this surgery despite the risks. So this is where we are now. His surgery is scheduled for May 29.
At first, I was still very hesitant and worried about the effects of the surgery. I felt like it was the right thing, but knowing all the possible outcomes, good vs bad kept tearing my heart. I saw his speech progressing and then him using his left hand even more efficiently. He had worked so hard to get to where he is now physically and has overcome so many obstacles...I felt that the surgery would devastate all that. So is it the right decision? The risk of left sided paralysis, the guarantee loss of fine motor function of his left side, therefore losing the use of his fingers...the loss of peripheral vision, etc. all haunted me. However, even just this past month, we have seen his seizures getting even worse, more violent and lasting longer. After his seizures, it would take awhile for him to return to his normal self. We have noticed regression in his walking, attention span, and behavior. He has not met any of his therapy goals since October and has even lost some skills that he once had. The seizures are taking more of a toll on him. It will be detrimental if we don’t do the surgery. This surgery will atleast give him a chance. So, for this reason, I have peace and hope about the oncoming surgery.
We can not thank you enough for all of your support and prayer during this time. It has made such a huge difference and I appreciate every one of you! I will try and keep y’all updated through this site as time goes on! Thank you