Our youngest son Cody is now 2 years old. He is such a happy and beautiful boy so full of life. He was born September 19, 2010, three days after my birthday. A true gift from God. But he was early. His actual due date was not until October 16th. He was born 36 weeks and one day. One day earlier and he would have been premature. At about 20 weeks pregnant I was diagnosed with preeclampsia. Preeclampsia is a condition which can be dangerous to mother and child. My condition got worse and I was admitted to the hospital. I spent 3 weeks in the hospital and put on strict bed rest for the duration of the pregnancy. On the day of his birth, my condition got so bad they had to do an emergency C-section. He was born at 3:18pm at 6 lbs 13oz. a seemingly healthy boy. We had an extended post delivery stay because he was jaundice and his blood sugars were low. He underwent UV treatments for the jaundice. These were the beginnings of his medical problems. In utero it was discovered that one of his kidneys was larger than the other, so at two weeks old we had to take him to a urologist for an ultrasound. A few months later we took him back and they felt that it was nothing to be concerned about. That was great news, if only that had been the end of his problems.
During the first few weeks of Cody's life we noticed that his bowel movements weren't normal. Not only was he not having many, when he did they weren't what was expected for a new born. At 3 weeks old I took him to his doctor because he hadn't had a bowel movement in 3 to 4 days and it appeared his abdomen was distended. He was sent for x-rays and we were sent immediately to Wolfson Children's hospital where he was admitted for testing for Hirschsprung's disease. After a long night of testing and x-rays the results were negative for the disease. This was great news but we still didn't have answers to his GI problems. So we started seeing a specialist for GI. Many blood and stool samples later they diagnosed him with chronic constipation. Treatment has been suppositories and laxatives as needed, and the hope he will eventually grow out of it. Since then, our pediatrician has seen him many times, for multiple reasons. His medical folder is over 2 inches thick. Here is a list of the reasons he has been to the doctor so much; severe allergic reaction to mosquito bites requiring antibiotics, multiple upper respiratory problems, chronic fevers, febrile seizures, asthma, strep throat, pneumonia, bronchitis, skin rashes, ear infections, acid reflux, and failure to thrive.
He was sent to several specialist including infectious disease, nutritionist, allergist, ENT, GI, and urology. He was treated for acid reflux and allergies with medications, and also put on breathing treatments. At one point he was on 9 medications at the same time. In November 2011, Cody was diagnosed with failure to thrive, after losing weight caused by multiple things. We were sent to a feeding therapist after he stopped eating entirely, and we were only able to get nutrition in him by a high calorie liquid diet. This lasted on and off for about three months. Also during this time we were seeing the ENT for his respiratory issues. Cody's sinus issues were so bad they decided to proceed with surgery, even though he was so young. In December of 2011, Cody was 15 months and had surgery to remove his adenoids, tonsils, and to have ear tubes put in. The surgery definitely helped with his sleeping through the night and he seemed to get sick less often. Eventually his apatite returned.
Unfortunately the surgery didn't solve all his respiratory problems. Since the surgery he has been seen by the pulmonologists every month. At his last visit on September 6th, they discovered that on all of his x-rays, there is a mass in his lower left lung. The specialists are still unsure of what it is but have said that it does not look like a tumor or cancer. The decision was made to treat as asthma and return in 2 months to check for changes. If it hasn't changed they would have to do more extensive testing.
One of Cody's newest conditions is that because of all the steroids and antibiotics, his teeth have suffered and he now has to have extensive dental reconstruction on his four front teeth as well as a caps on one or both upper molars. It is necessary to restore his front teeth for speech development, and his molars he won't lose until he is 12 years old. Because of his age the dental work will have to be done at the hospital, and he will be put under. We do not have insurance for dental, and the procedure is expensive, also we have to jump through hoops for the hospital portion of the bill for that to be covered, meaning we have to prove it is a medical necessity. But we still anticipate having to pay the deductible of 2,000, on top of the out of pocket dentist bill of $5,000.
Cody also has developed febrile seizures. On July 20, 2012 Cody gave is the scare of our life. It started as a simple fever and turned into 3 seizures with a call to 911 and an ambulance ride to the ER. The first of the seizures were short and we were unsure if they had happened. After giving him Tylenol his temperature kept rising and he became lethargic. He had a 102.8 temp so we got him in the bath to cool him down. The bath helped to bring it down but immediately after that he had a major seizure. He started convulsing and vomiting. The vomit caused him to choke and restricted his breathing so 911 was called. Thankfully he recovered but the incident was horrifying and you just feel helpless. At the hospital they explained febrile seizures and that they can reoccur but most children grow out of them.
In addition, Cody has been diagnosed with sensory integration disorder, also known as sensory processing disorder. This disorder is probably the hardest for him because it affects his everyday life. This disorder is tactile, meaning he is very sensitive to touching and being touched. It can only get better with therapy. We started noticing symptoms for this we he was about 1 year old. Simple everyday tasks, such as changing a diaper, brushing his hair or teeth, had become very difficult. He became aggressive when he anticipated those things, and even going to the doctor was torture for him. His clothes literally hurt him.
He has been evaluated at Early Steps, a government program, that offer many wonderful services for children like Cody like occupational therapy and even come to the home or school. Unfortunately, he was 1 point away from qualifying for the program. We have taken their suggested therapies and condition him at home, which seem to help, and he can come back in December to be reevaluated then.
To summarize Cody's first two years of life, starting with a stressful birth, he has gone to ER 4 times, once riding in an ambulance, has had ENT surgery and upcoming dental surgery, he has been to the GI specialist about 5 times, ID and nutritionist 4 times, pulmonology 10 or more times, feeding therapy twice, ENT around 10 times and to his pediatrician some where between 50 to 100 times. He has had his blood tested about 6 times, digestive tests, a lower GI biopsy, a sweat test for cystic fibrosis, hearing tests, and about 20 x-rays. Through it all he has been on 2 to 9 medications at a time.But in spite of it all he is still smiling. We have always said that he is the happiest sick baby ever, and I know that God won't give him or us more than we can handle.
- Rachael Interdonato
- Bill Coleman
- John Wood
- friend from work
- Saturday Garage Sale