Ryan was born in March 2002.  In July, at 4 months old and 5 days after his immunizations, we began to notice that occasionally Ryan's eyes would wander back and forth, out of his control.  He would sometimes jerk all over like a startle for no reason.  We took him to our pediatrician for a check up and we were referred to a neurologist in a major city near us.

Shortly after visiting the neurologist, Ryan had two EEG's (electroencephalograph).  The first EEG was a simple quick test in an outpatient office, and a second was done the following day in the hospital with video cameras (Video EEG or VEEG). The second showed that Ryan was having seizures, they were called myoclonic seizures. This is where the whole body jumps like a startle. We did many tests that day to try and determine the cause of his seizures.  We did a brain MR and other metabolic and genetic tests.  All came back normal.

We were shocked and worried about our little baby Ryan.  It seemed the grief would come in waves.  Some days I would cry and pray; others I would carry on normally.  I knew that for Ryan’s sake we needed to move forward as best we could and find a way to help him.  I had for the first time in my life a feeling of complete helplessness.  There was nothing I could do, no help I could find, no pill to make it all better.  I just prayed.

We started Ryan on medication immediately to try and control the seizures.  Klonopin was the drug prescribed, and it had horrid side effects.  Ryan became floppy and had a drugged appearance continuously.  It was a sad time for us.  Ryan regressed terribly during the 3 months he was taking Klonopin.  He could not support his own weight. He would try to sit up or crawl, but he would quickly fall, most of the time, hitting his head.  We purchased a padded cap for him to keep him safe.  

In November 2002, we started a new drug and weaned him from Klonopin.  Depakote was the drug prescribed and we expected to see Ryan move forward quickly in his development.  However, that was not the case.  He moved just as slowly as before.   At 8 months old, he was just learning to roll over and attempting to get up on his hands and knees. By one year of age, Ryan could sit up alone and crawl. 

Over the next year (2003) Ryan continued taking Depakote and remained seizure free.  However, Ryan made very little progress developmentally, despite our involvement with Early Childhood Intervention and private therapy.  All the doctors continued to be very positive; telling us that he would catch up, "just any time".  I believed them for a while and then reality took affect.  He was not catching up.  He was not even in the race. 

At that point in September, we felt again that the drugs were causing Ryan to be delayed.  We started weaning him from the Depakote to determine if the drugs were having too many side effects and also to assess if he still required medication.  Many children “grow” out of seizures over time.  They are not sure how this happens, but usually after a year or two, doctors will try to wean medication and see if the seizures are gone.  On Sunday, September 21^st, in morning while getting ready for church, Ryan had a seizure.  It was different than the jerks he had when he was a baby. I later learned that it was a complex partial seizure. It seemed like it lasted forever.  Tim was at work.  The seizure was not stopping.  I called 911 and took Ryan’s little jerking body out into the front yard. He was blue and not breathing well.  I started giving him rescue breaths and called for my neighbor, another nurse to come and help.  By the time he arrived, Ryan had quieted down and started breathing again. The ambulance came and we went to the hospital.  Ryan got a shot of Valium, Tim came home from work, and we determined that the seizures were still very much there. 

This event was something I will never forget.  In the midst of Ryan’s seizure, I was spiritually attacked.  Throughout the seizure, I had prayed over Ryan.  I prayed for it to stop, prayed for him to breath, prayed for him to live.  While I prayed, I literally, I heard a voice in my head say, “You have dedicated your whole life to Christ, and now he is going to let your son die from a seizure.  You’re praying and he is not getting better.  What kind of God is this?”  Now I’m going to give you a hint.  The voice was NOT God….it was NOT me….it was Satan. I have to say that the next few months were difficult.  I had to search the scriptures, pray, receive good counsel.  A war was on, for my son’s life, for my faith, for my family. I had to prepare myself to fight.  Here’s what I learned.

First, I don’t have all the answers and there is only one person who does, God.  Secondly, we live in a fallen world.  When sin entered the world through one man, Adam, so did death, disease, and suffering.  Ryan’s seizures are not given to him by God. They are horrible and are part of the sinful world we live in.  Tim, Ryan nor I did anything that made Ryan have seizures.  It is not a consequence for our sins or Ryan’s future sins.

If you take time to read the Bible in John 9, Jesus talks about a man born blind.  The disciples ask Jesus, “who did sin, this man or his parents, that he was born blind?”  Jesus answered, “Neither, but that the works of God should be made manifest in him.”  That’s fancy talk for God is going to take the things that Satan made for bad, and turn them into good. 

I am always amazed what people say after a senseless tragedy.  Several teenagers die in a car accident.  Five people accept Christ at their funeral.  Then people say silly things like, “God took those children away so people would get saved.”  No, Satan is the one to blame for death.  But our God is such a great, tremendous and wonderful God, that he can take something that Satan made for bad (teens dying) and turn out something good (people accepting Christ).  

I have also heard people say that, “God is trying to teach them something by giving them a child with a disability.”  God is not trying to teach us something.  Remember, God is good, all the time.  The disability is an attack from the enemy on our family, on our child.  However, I will say that I have learned more in Ryan’s lifetime, than I have learned in mine.  That however, is another way that God uses things that Satan meant for bad to be good. 

Now people say, if God loved us he would just stop all the bad things and everything would go our way.  Many of you will remember the story of the wise man who built his house on the rock and the foolish man who built his house on the sand.  Both houses had hardship.  One stood, one fell.  The difference?  One stood on the Rock, Jesus Christ and weathered the storm. God’s love does not absolve us from struggles, but if we trust in him, we will be able to stand.

Also God gives us all free will.  So when bad people make bad choices, bad things happen.  I remember this when I think of September 11^th.  Many people question why God made that happen.  It wasn’t God who hijacked the planes.  It was bad people who were plotting evil and hatred.  Let’s give credit where credit is due.

I have found freedom in the truth of God’s word (the Bible).  Ryan will be completely healed either in death or while here on earth.  In the mean time, God gives me the grace to stand in the struggle.  BTW, God doesn’t send disabled children to special people (yet another crazy belief). God sends extra grace to those who ask. 

Now back to the story. J After weaning the drugs and the seizures were still present, we found an alternative treatment, the Ketogenic Diet.  The Ketogenic Diet is a neurologist supervised diet done with a special dietician for children with seizures.  It requires a hospitalization to start the diet and training by the parents on how to administer the diet.   Every piece of food must be weighed on a gram scale and the child is not allowed to eat at will.  He would have his meals timed, weighed and specifically designed by a dietician.  The ratio typically is 80% fat, 20% protein and virtually no carbohydrates, usually only about 3-5 grams per meal, depending on each child's response to the diet.  

In February 2004, Ryan started the Ketogenic diet and we were pleasantly surprised.  It worked.  Shortly after starting we stopped his meds and Ryan continued for 2004 with no seizures, and no medication.  We were thrilled.  It was no easy task to weigh and measure all of Ryan's foods, but it was worth getting to see Ryan off of the medication that that he had taken for most of his little life. 

Developmentally Ryan started to make small strides.  However, we realized shortly after removing the drugs, that Ryan still had significant delays not related to medication.  It was just Ryan.  This was hard to take.  The reality of having a disabled child was saddening for us; however, we took solace in Ryan's sweet, gentle and loving personality, and the belief that God would see us through.    

From the beginning, Ryan had always been in therapy of every kind, speech, physical and occupational therapy etc. However, we felt that we needed to do more for Ryan.  So in August of 2004 we started a program designed by the National Association of Child Development.  All the therapy was done at home by me, several hours a day.  We would go for a training session once every 4 months.  The neurodevelopental therapist would devise a program that fit Ryan's needs.  We would then go home and implement the program for the reminder of the 4 months.  At the end of the 4 months, we would return for evaluation and a new program.   We did all sorts of exercises to try and stimulate Ryan's brain in a way that would encourage development.  Ryan was cruising around furniture, saying Mama and DaDa, developmentally he was close to a 10-12 month old child, and he was 3 years old.

In July 2005, a year and a half after starting the diet, we started weaning the diet slightly to allow Ryan more variety. I no longer had to weigh and measure every bit of food and Ryan was able to eat more food and fill full.  The modified Keto diet was much like the Atkins diet; however, higher in fat.  Ryan did well.  Seizures were still silent.  We had hopes that they were gone forever.  But again on September 21^st (I don’t’ like that date by the way), Ryan had a seizure.  This time it was like the seizures you see on TV, a tonic clonic seizure. It didn’t last long, and I comforted Ryan.  It really hit me a few days later.  The seizures were still there, underneath.  We continued on the modified diet with a few tweeks from our dietician.

In November 2005, we took a much needed vacation to Disney World in Florida.  While we were in Florida, Ryan seemed to progress faster.  We found that he would take on challenges and thus build stronger muscles and help with his overall low tone and muscle weakness.  At this time we decided to stop working with the Neurodevelopmental therapist.  We started constantly challenging Ryan, and working with him to accomplish things that we saw him ready to do.  We encouraged him to try harder and to do better. He loved it and started progressing faster. 

Then on December 1^st, Ryan had a different kind of seizure, a simple partial. This kind of seizure is where only one area of your body has a seizure.  For Ryan it was his right arm and right leg.  He was conscious and it was very scary to him.  He screamed and cried.  At first we thought he was hurt or sick, but as we observed him, we realized it was a seizure.  However, something terrifying happened with this seizure, Todd’s Paralysis.  This is where the area where the seizure occurred is temporarily paralyzed.  We thought Ryan had a stroke, he could not use his entire right side.  We took him to the ER and they called Ryan’s neurologist, and he explained about Todd’s paralysis.  The paralysis lasted for several hours.  This was one of the scariest times with Ryan.  We thought we had lost him forever. 

After this seizure we added a significant amount of fat back into Ryan’s diet.  This seemed to improve things, and Ryan did better. 

February 11, 2006, at almost 4 years old, Ryan started walking alone.  We were shouting and jumping for joy.  We traveled everywhere just to show him off.  We could tell we weren’t the only ones proud of him,  Ryan was proud too. The grin was ear to ear.

A few months later, in April, we went to a well known Children’s Hospital in a large city near us for a evaluation by a nephrologist (kidney doctor).  We had found in July of 2005 that Ryan had a side effect of the ketogenic diet, osteopenia (low bone density).  This is common for children on the keto diet and despite supplementing Ryan daily with Calcium, he still was not building enough bone. Calcium is regulated by the kidneys there fore a kidney doctor visit was in order.  

At the appointment, we answered many questions and my family history of polycystic kidneys was brought up.  The doctor felt like we should screen Ryan for the disease by doing a kidney sonogram.  We had the sono done.  Afterwards, the nephrologist showed us the sonogram and pointed to all the places where he believed there were cysts.  He said there were cysts on both kidneys and the disease itself was at a “moderate” stage.  He talked about Ryan’s future need for dialysis and probable kidney transplant.  He told us Ryan would start a drug that would help preserve his kidney function and he wrote a prescription.  Also his diet would need to be changed.  He would need to stop the keto diet because it was contraindicated for a person with kidney disease. We were devastated. 

We returned home and asked all of our parents to come by for a visit.  It was so difficult to give the news.  It was so foreign and shocking.  Ryan always had seizures, so something like kidney disease was completely unexpected.  

Over the course of the next week, we took Ryan off of the keto diet and started drugs again, depakote specifically. Initially the depakote made Ryan sleepy and cranky. But after a week or two he was better.  I could see no deterioration in Ryan’s cognitive state or in his developmental progression.  I was thankful. He was also able to try foods that he had never tried before.  He had his first pancakes, ice cream, and mac n cheese.  That was fun! I was thankful that these first changes were easy for Ryan.  I dreaded the future to come. 

While starting medication again, Ryan had another seizure.  It was the simple partial with the Todd’s paralysis.  It took him a month to regain his walking due to the transient paralysis.  That took my breath away.

In my research, I started to look at disease processes that had seizures and kidney disease featured.  One seemed likely to be a possibility, Tuberous Sclerosis.  I found a clinic that specialized in caring for children with this diagnosis that was in the hospital were our nephrologist was.  I called the clinic and the nurse told me she would pull Ryan’s chart and talk with some of the clinic’s doctors about the possibility of Tuberous Sclerosis. 

A few days later the nurse called me back and mentioned that she saw the doctors note where he had diagnosed Ryan with Polycystic kidney disease, but when she looked at the radiology report on the kidney sonogram, it said it was normal.  She was confused.  So was I. 

After weeks of calls and questions it was determined that the nephrologist viewed the sono first and had diagnosed Ryan.  Then the same film went to the radiologist and she did not concur with the nephrologist’s diagnosis.  She viewed Ryan’s kidneys as normal.  I spoke with the nephrologist on the phone once this discovery had been made.  He totally recanted his initial diagnosis.  He said he had only “suspected” polycystic kidney disease. He was lying. 

We then went to another large children’s hospital in our area for a second opinion.  The nephrologist ordered a CT of the kidneys.  This test unlike the sonogram, was more definitive and diagnostic. Three days later, we were given the good news.  RYAN’S KIDNEYS WERE NORMAL!  We were ecstatic at first and then angry at the initial  misdiagnosis.  Ryan had went though so much as a result.  For now we are focusing on the good news that Ryan kidneys are healthy!

At four years old, Ryan made great strides. He started making conversation using sign language.  He made attempts to form words. He walked over 80% of the time without his walker.  His gait started to be straighter and more fluid. He started to use the potty but was not able to potty train yet. He was able to understand much of our conversations and respond appropriately. 

At 5 years old, Ryan started walking all the time without any assistance.  We used his wheelchair only for long distances.  He never uses his walker anymore!  His last seizure was on July 11, 2006.  We have put off potty training for now but plan to try again soon. He is matching shapes, colors and is learning his alphabet and numbers.  He can name most colors using sign language. He is counting using his fingers.  He is making conversation using sign language, he has learned close to 40 words. This progress has been wonderful to watch.  We are thankful for Ryan and the joy he brings to our lives everyday. 

To read more about Ryan's current progress click the Ryan's Progress page.