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Gregory William Kephart |
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Gregory William Kephart was born May 15, 2003. He was a healthy robust baby boy, weighing in at 9 lbs at birth, (two weeks early I may add). He is our first-born. He was progressing along the usual milestones and was sitting up independently at 5 mos. He was getting into the crawling motion, he was a happy little boy and then the ear infections started in November of 2003. This is where our nightmare began. Gregory had 2 ear infections in his right ear the month of November. He was given 2 different antibiotics at that time. He recovered or seems to have recovered from the ear infection rather quickly. He would bounce back to his usual cheery self. The Sunday before Thanksgiving, we had our first family picture taken. This is my all time favorite picture of us. He was a happy little guy and the photographer even said that he was a cutie. We went back to the doctor the Tuesday before Thanksgiving to make sure that the ear infection cleared up and she said that his ears look fine. We had our family over for Thanksgiving and all were playing with Gregory. November 29th, Saturday night after Thanksgiving, he woke up screaming. I thought another ear infection. He woke up screaming the other 2 times he had the ear infection and was tugging at his ear. He always wakes up happy, so I knew that something was wrong. He developed a pretty high fever, 104 degrees. I called the doctor and she told me to give him Tylenol and if the fever doesn’t go down, take him to the emergency room. Well, his fever did not go down, so we took him to the emergency room on Sunday morning, November 30th. I had explained to the doctors that he had 2 ear infections the month of November. They gave him some Tylenol and checked him out. His fever went down and they said that everything looks ok. They looked at his ears and said that they looked fine. We were given several choices, one was to go home, two was to do some more blood work, and three was to do a course of antibiotics as a precaution. The doctor felt that option two and three was not necessary, that Gregory had a viral infection. We should follow up with his primary care doctor on Monday. Monday December 1st, I saw one of his primary doctor’s partners and she said that the left ear was infected and gave me another antibiotics. She also gave me a decongestant to help his stuffy nose. I didn’t want to give him the decongestant; I felt he was too young to go through that. Gregory was only 6 ½ months old. The doctor said that he had the viral infection that is going around. Tuesday, December 2nd, he was not eating or drinking, so I was worried that he would be dehydrated. He only had one wet diaper that day. I called the doctors office and they said to take him to the emergency room where they will rehydrate him if he is dehydrated. They looked him over and said that he was a little dehydrated so they would give him an IV to rehydrate him. It was upsetting to watch the nurse to try to poke Gregory to start an IV. They poked him 3 times and I had to leave the room because he was screaming so hard. They finally got a vein and came out to get me. Anyway, the doctor thought his right ear was infected, not the left ear, so they gave me another antibiotic. Thursday December 4th, he was not bouncing back, was wimpy and head cocked to the right side. I thought I would take him back to the doctor to check him out. I saw another one of his primary doctor’s partners. Just by observing Gregory (looking at him), he said that he was fine, he had a viral infection. It takes several days for it to take it’s course. He’s had fevers off and on and I kept treating it with Tylenol or Motrin. I asked him, when do I bring him back? He said that if anything changed bring him back, otherwise ride out the viral infection. Wednesday December 10th, my husband and I decided to take him back to daycare. Maybe he’ll bounce back seeing the other kids that he loved to play with. The caregivers there even said that this is not our little Gregory. I told him that he’s been like that the last week and a half. They called me that afternoon and said he was running a fever and seems lethargic. The director at daycare even asked if Gregory was tested for Meningitis. I said I don’t know since I didn’t know much about meningitis then, but thought that they would test him for anything to find out what is wrong. I took him back to the doctor’s office and saw the same partner the previous Thursday. He said lets take him to the ER and run some test. I even asked if it could be Meningitis and he said “oh no, it’s a viral infection and want to run some test to prove that it’s a viral infection.” This is when everything went downhill. I took him to the emergency room about 5 pm and they looked him over. They ran some test and x-rays. Gregory was nursing fine when I first got in the ER. After several hours, he was getting confused and was unable to latch on. The ER doctors finally came in and asked us if we dropped Gregory or had been in a car accident recently. My husband and I said no, why are they asking these questions? They thought it was a head trauma, fracture to the skull and appears to be about 2 weeks old. There was also fluid on the brain, possible blood. This would take us back to around Thanksgiving. Because of this initial diagnosis, my husband and I were interviewed for potential child abuse. They asked all kinds of questions and we were devastated and were trying to figure out what might have happened. We couldn’t think of anything. Anyway….his leg started shaking before they were ready to take him up to NICU. Started asking if that happened before and we said that it was new. He’s never done that. They were really drilling us like we were abusing our son. Gregory was moved to NICU that night. My husband and I never left his side, we both took turns staying with him and talking to all the doctors who examined him, and while the other one would sleep. Needless to say, it was hard to get any sleep with Gregory being so sick. Friday December 12th was the day they told us that the MRI showed that it was not a skull fracture, but the fluid that they drained from the skull confirmed it was Meningitis and he had blood clots in the brain. His left side was completely damaged and his right side was partially damaged. They told us our son would never be normal. My husband and I were devastated and asked what they meant by not normal. They said he could be retarded, paralysis, slow growth, learning disability, never able to walk, etc etc…..We asked them what his chance of a full recovery? And they said very slim. We were determined to prove them wrong and make sure that Gregory gets everything he needs to make a full recovery. His leg shaking in ER was probably a seizure and they put him on Phenobarbital. He was in NICU till December 15th, his 7 months birthday. They moved him out of the NICU into a regular room. He remained in the hospital until the 27th. We spent his first Christmas at the hospital. Not a pleasant Christmas I might add. He was on a course of antibiotics for 2 weeks to treat the Meningitis. They also noticed on the MRI, that he had an infection of the Mastoid, behind the right ear. They felt that the bacteria from the Mastoiditis traveled to the brain and caused the Meningitis. They never had a positive growth in the hospital, so they could not determine the bacteria. Upon his released from the hospital, his neurologist wanted to start Physical Therapy (PT) and Occupational Therapy (OT). Because of insurance restriction, only 20 OT and 20 PT a year regardless of the diagnosis was allowed, we were only able to do OT/PT every other week, so he had OT and PT about twice a month. We’ve been going every week for therapy and even when the insurance no longer covered the OT/PT, we continued out of our pocket. Our neurologist said that this could take several years. She explained to us initially that the brain has a way of rerouting the things that he lost due to the brain injury to another area of the brain that is still working. He is still growing and the brain is still growing. It is basically a wait and see to see what progress he will make and what his future holds. He is a happy little boy and my husband and I are very fortunate to have family around to help us watch Gregory while we work. My mom, and his mom and dad take turns watching him and working with him with his therapy. My cousin is now a retired schoolteacher and has joined my mom to help watch him. It takes 2 people to watch him, one to hold or position him, while the other entertains him and help him play with his toys. March 2004, I haven’t been feeling well and thought this was due to stress from Gregory’s meningitis and prognosis. Well….it turned out that it was not just stress, but morning sickness. I was pregnant with our 2nd child. My husband and I said that we would like another child, but would let nature take its course due to the fact Gregory was conceived with fertility treatments. I didn’t think we could get pregnant on our own. Gregory’s neurologist even told us that the new baby could be Gregory’s therapist, he’ll see him or her do all these things and he’ll want to try harder. July 2004, Gregory’s first EEG at the neurologist revealed that he had potential markers for seizures on his left side, meaning that if they took him off the phenobarb, he could have seizures. All that means is that they will keep him on the phenobarb a while longer. He will have another EEG to see if anything changed. He may eventually be weaned off the Phenobarb or he may have to take this for the rest of his life. Again, another wait and see. Our neurologist explained that she expected this after a traumatic brain injury. The only way to describe this is that the brain is working overtime to repair itself and sometime short circuit itself to cause these interruptions. This may go away over time, but again he may have seizures for the rest of his life. October 2004, my daughter, Kayla Ann was born on October 1st, the day before my birthday. She came in at 7lbs 15oz. November 2004, Gregory’s visit to the neurologist revealed that he has Spastic Quadriplegic as a result of the meningitis. It’s the same as Cerebral Palsy, but since it was not a birth injury, they call it Spastic Quadriplegic. It’s the most common form of Cerebral Palsy. How did this come about? We noticed that Gregory tends to stiffen up at times. This is high muscle tone. Part of his therapy is to break that muscle tone. Once again, my husband and I were devastated to hear that he now has Cerebral Palsy. We didn’t have any idea what we have ahead of us, as we didn’t know anything about Meningitis other than it’s name, and we didn’t know anything about Cerebral Palsy. December 2004, it’s been a year since his time in the hospital and Gregory has made some progress. The recovery is very slow. He is a smart little boy, but he cannot sit independently, cannot talk, cannot walk by himself, cannot roll over or crawl. My husband and I still have high hopes for him and is ready to tackle whatever comes our way. We’ve added pool therapy to his busy agenda. This is supposed to help relax his muscle tone with the water in the pool being warmer than a typical pool. It falls under the category of OT. February 2005, Gregory started Speech Therapy. He only has a few words or more like sounds in his vocabulary. He is now 20 months old. We are to work on Oral simulation to help him be more aware of his mouth. He can do a few letters, like ‘eh’, ‘mo’ for Elmo, ‘mama’, ‘ dada’. Gregory got AFO’s for his feet. AFO’s are Ankle Foot Orthotics, basically a plastic brace to keep his foot right angled. He tends to point his toes. We have increased his therapy sessions to 1 OT and 1 PT a week now, instead of every other week as well as his weekly speech therapy. April 2005, Our OT therapist has suggested Baclofin for Gregory’s muscle tone. She called his neurologist to make this recommendation. Baclofin is a muscle relaxer. He stated taking them 2 times a day. We have noticed his trunk muscles are really relaxed, to the point he was floppy again. His fingers have opened some, but the biggest improvement was he started rolling over. He had not been able to roll from front to back. He can flip over from back to front with no problem. August 2005, we visited our neurologist again, and she was very pleased with his progress. Gregory had quite a vocabulary and some command words, like ‘more, done, out, go, etc. She also wanted to increase his Baclofin to 3 times a day. He actually started crawling, more pushing with his legs while lying on his belly. That brought tears to my eyes. Every little ‘baby steps’ he takes, gives us hope. Gregory continues to make progress and my husband and I are very committed to give him the therapy he needs. There is hope and we have our happy little boy back. He is our angel and still with us today. Take a look at our photo gallery and you’ll see why everyone smiles at him. His smile is contagious. If anyone would like to e-mail me, my e-mail address is robin@thekepharts.net Thank you Frankie, for letting me share my story about my EBA Gregory. |