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SAM'S SECOND YEAR - 1998
Sam headed into his first birthday gaining strength and growing. The main thing was getting him off Phenobarb. Almost as soon as that was out of his system, he really brightened up and started to do good baby-things like lifting his head and rolling over. We started to get needed therapies that were available to us. We started with Physical Therapy which was done at our home. We went through several physical therapists, some of whom were good at working with Sam and others who were kind of in over their heads. We also got Vision Therapy through the local school system and that therapist, Nancye Rubin, worked with Sam until 2002. She was wonderful at working with Sam's vision deficit, helping us wade through the morass of eye doctors and opticians and just generally being a terrific support to us.
Sam working with vision therepist Nancye Rubin
 
Though he doesn't wear them at all times, Sam does have glasses and
wears them as the mood suits him.
We noticed that Sam had shown an interest in music since the night before his brain surgery when he stopped figiting to listen to the Boston Pops on the TV. Nancye knew of a music therapy undergrad student from Florida State University who needed some intern time with children and introduced us to Lisa Hansberger. Lisa started out working with Sam in March of 1998 and came to our house twice a week to work with Sam. At first she was working as an intern and couldn't charge for the services. Once she graduated and entered the Masters program she could charge and we were more than happy to pay her for the therapy. Sam just LOVED her visits and they had a lot of fun. Lisa finally got her Masters in 1999 and moved to back to Chicago. We have not been able to replace Lisa. We keep in touch and she visits when she in town.. We are always glad to see her.
Sam loved having Music Therepy with Lisa
 
Sam stayed seziure free throughout 1998 and that was an added blessing because we were preparing for the arrival of his brother Corwyn Alexander Johnson on May 4, 1998. Again we had Dr. Brickler to handle the delivery, also a C-Section - because the previous C-Section made a normal delivery unadvised. Cory's middle name is in honor of Dr. Brickler. In contrast to Sam, Cory was full term and weighed in at 9 pounds.
Cory and Mom getting to know each other
In August we brought Sam to the Dick Howser Center for early childhood intervention. We met with the therapists there and they started to see what Sam could do. One of the first things that impressed us was when the physical therapist, Christie Stavres, blew soap bubbles in the air and Sam watched them. This showed us that his vision was much better than we had suspected. Sam also got treatment from occupational therapist, Kathy Kellogg and speech therapist Susan Mattox. Sam was challanged with fun activities designed to challenge him. Sam showed a real sense of humor working with these professionals.
Sam really flourished in 1998. This photo from July shows a happy playful boy!
In September 1998 Sam once again went under the knife. He had an undecended testicle, which left alone could easily have caused complications, such as cancer etc. later on. So an out-patient operation was done to correct this problem. Sam did well with the surgery and recovered in a few days. But this brought the number of operations on his small body to eight...with more to come. As 1998 ended we celebrated a seizure-free year.
...we're gonna party like it's 1999!
1999 was a year of growth for both boys. Cory started walking in April and Sam had a really good "commando crawl" to get around with. Other modes of transportation were less successful, but allowed for Sam to get some "up" time. The first of these apparatus we used was a standing wheelchair we called the Chariot. It allowed Sam to be in a vertical position and, some mobility, but he never moved himself around much in it. But it was great for giving him a table top to play upon. We strapped his keyboard to it and he liked making music standing up. Lisa also employed it for therapy sessions.
Sam in the "Chariot" with his Casio Keyboard
Sam strummin' a few tunes with Lisa
JULY 5, 1999: In a life that had been touched by so many medical professionals for survival, the loss of any one of them is a personal tragedy for our family. Such an event struck on this date and took a talented, caring professional in the person of Kathy Parrish ARNP. Stopped on I-10 on her way to work that morning, as a broken-down vehicle was moved from the road ahead. The clear warm morning was shattered by the sound of an eighteen wheeler not stopping for traffic. It plowed into the stopped cars at 70 mph killing the driver of the truck, a college student driving home after the 4th of July holiday, and our friend Kathy, who had helped to deliver both of our children. Kathy always had a bright outlook on life and an easy laugh. She loved babies and it showed in the attention and caring she gave all her patients. She is missed.
The aftermath of the terrible crash on I-10, east of Tallahassee
Photo courtesy Phil Sears/Tallahassee Democrat
Sam and Cory love to play in water. In July 1999 the family travelled to Orlando for the IPMS National Convention and both boys enjoyed the time we spent in the pool. We had very nice float rings for them and the water was warm. Sam just wasn't sure what all the other people were doing in his bathtub. We also filled a plastic sandbox with water to create a kiddie pool in our yard. This was just the right size for the boys and we had a lot of fun with them playing in it.
Ginny and the boys playing in the "pool" with Ginny's dad
Well two years had passed since the shunt was installed. The shunt, which aides the brain in draining excess Cerebral Spinal Fluid (CSF) had been installed since August 22, 1997. Because Sam had an Illiostomy at the time, a VP shunt (into the abdomen) was not possible. So a VA shunt (into the Atrium of the heart) had been installed. The VA shunt tube had to be positioned very precisely at the opening to the Atrium. As Sam grew, the tube pulled away from the heart and need to be adjusted. The time had come to revise Sam's shunt. This would be his ninth operation in his 30 month long life. Since his Illiosotomy had been reversed in late 1997, the possibility of installing a VP shunt was available. When a VP shunt is installed, extra length tubing can be placed allowing for the tubing to adjust itself as the patient grows. This means fewer revisions. The plan was to see if Sam's abdomen would accept a VP shunt, if not then a revision of the VA would be performed. Dr. Mickle, who performed the original surgery, opened Sam's belly in two places and checked to see if the abdomen would accept a VA shunt. What he found was bad news, there was too much scarring to allow for a VP shunt. So on to Plan B - revise the VA shunt. Accessing the shunt drain tube in the neck, Dr. Mickle discovered the most amazing thing: Sam's VA shunt was closed off and had not been operating for some amount of time. However Sam had shown NO signs of shunt failure. The conclusion was that Sam's brain was draining normally and that the shunt was no longer needed!! So the tube from the neck to the heart was removed and the end of the tube from the brain was closed off and the pump was left in (since removing it from the skull would cause more harm than good.) and Sam was shunt free! This means that there will be no need for the two-year revision cycle. Something finally went in Sam's favor. We were thrilled!
Sam recovering post-op after his shunt was revised
A smiling Sam, nearly medication free
After the shunt was removed we went in for a Neurology check-up on October 13 and they were thrilled to hear about the shunt and lack of seziure activity since 11/97. As a result Dr. Maria discharged Sam from Pediatric Neurology care and gave us a schedule for weening Sam off of his medication. When the weening was done by November 21, just in time for Thanksgiving, Sam would have been completely free from Tegretol. But it was not to be. The day before we were to end medication completely, I awoke to in the morning to find Sam seizing in his bed. The seizure lasted nearly four hours before the ER doctors could bring him out of it. We spent four days in the hospital and put Sam back on medication. We were discharged on Thanksgiving evening. So as 1999 ended Sam was on continuing meds. But otherwise happy and healthy.
Playing with shadows in the late afternoon sun
Sam with Glenn's mom on Christmas Eve
Moving into 2000 with Sam CLICK HERE
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