Where we've been... and where we're headed...

On March 19th, 2006 Henry was born a perfectly healthy, happy, thriving baby boy ~ one that Paul and I prayed and planned for for over 2 years. Henry was a dream to have...laughing and growing and loving life with his older sister and brother! He was very fat and very happy!!

As I think back now, I can remember the Sunday crystal clear in my mind when all of our lives seemed to change in a way that I will never be able to describe. Henry was taking a nap, and I was chatting on the phone cleaning up the house. I heard him 'talking' in his bed and let him lie there for a few moments as I finished my phone conversation and ran the vaccuum in the house. When I went to get him from his bed, he had his favorite blanket over his face and when I picked him up I immediately noticed that he looked 'bad'. His face was white as a ghost and his lips were rather 'blue-ish' and he was very lethargic. I took him downstairs to Paul, and within seconds we were dialing 911. The moments passed VERY slowly, but by the time the paramedics arrived, Henry was looking 'normal' and he passed all tests given by the very kind gentlemen who were here to help (normal heart rate, pulse, bp, oxygen levels). We did, however, take the precautionary trip to the hospital just to have a few more tests to be sure everything was ok. After a normal EEG, EKG, etc., we were told that we had most likely dodged a tragic SIDS incident. Shew! We were so thankful, and Henry went home with an Apnea monitor!!

Over the next few months we noticed several things. Firstly, as much as a mother doesn't like to admit it...Henry was not 'progressing' like his peers. He wasn't rolling over or sitting up or crawling like kids his age were. And he was always 'twitching'....

With the gentle prying of a dear friend, she finally convinced me one day in November, 2006, that these 'twitches' were probably not the 'nothing' that Paul and I kept proclaiming they were. So we agreed to seek further consultation and advice from our local pediatrician.
Finally, just a few weeks before Henry's first birthday (February 26th, 2007 to be exact), we traveled to Children's Hospital in Little Rock to have another EEG just to be 'reassured' that there was nothing wrong, and we could ease our minds. It took the lady giving the EEG about 5 minutes to discreetly step out of the room and return with the words "I think you all are going to need to stay a while longer and speak with the neurologist. Henry's EEG is very abnormal". And about an hour after that, we were given the news that Henry's 'twitches' were actually myoclonic seizures that were occuring hundreds of times per day. He had epilepsy.

This was the first of many visits to the hospital and the beginning of thousands of seizures. Henry has been diagnosed with Intractable Myoclonic Epilepsy ~ a rare, very hard to control form. He suffers from myoclonic 'jerks' and atonic seizures (these cause every muscle in the body to 'give-out' for a split second, therefore resulting in quick, viscious drops of his body). As many of you have seen, this has resulted in countless bumps, bruises and cut lips for Henry, and a very over-protective circle of loved-ones around him!

In shock and 100% completely uneducated (and in a fair amount of denial) we headed home with a prescription for a medicine that would help stop Henry's seizures. Unfortunately, we were in for a rude awakening. After 7 different medicines (as many as 12 pills per day), the drugs never made an impact on his seizures.

After failing on so many medicines, we were referred to LeBonheur Children's Hospital in Memphis, and Dr. James Wheless. Dr. Wheless is a pioneer of sorts in his field, and we feel blessed to be under his care. He leads his team at LeBonheur and at St. Judes's Children's Research Hospital as the Chief of Pediatric Neurology, and has developed a level IV Epilepsy treatment center at LeBonheur (the highest rating in the country).

We first met Dr. Wheless in July of 2007, as we were admitted to LeBonheur for a week of EEG's and monitoring. After only 24 hours, he recommended we discontinue any medication ~ nothing had ever even slowed Henry's seizures, and he was in a constant 'drugged' state ~ and begin the Ketogenic Diet. The diet is reserved for children with difficult to control seizures. It is a low carbohydrate, very high fat diet. All food must be carefully prepared and weighed to exact accuracy for every meal. Henry is allowed 678 calories per day, and is on a ratio of 3.5 grams of fat to every 1 gram of carbohydrate and protein. All of his meal plans are prepared for us by the hospital's dietician, Ms. Jennifer Jerles ~ our very close friend after one year!! While Henry has been on this diet, it has been probably the most trying time of all of our lives!!! Obviously mostly for Henry, but also for his family and loved-ones who just want to give him a cookie or a chip that he soooo desperatly wants!!! We were so very happy to see marked improvement and decrease in Henry's seizures after only a week or so on the diet. His seizures decreaed from over 100 per day, to about 30-40 per day. And his cognitive development and interaction and social skills improved daily!! We were so thankful and excited!! This gave us all the encouragement we needed to keep going through this challenging diet every day, even though all of our lives were changed dramatically. Dinner times were rearranged so that Henry didn't have to be present when the rest of us were eating 'normal' food, no more going out to eat, Lane and Sam (and all of Henry's friend's) know the strict rules about no eating in front of Henry...the list is un-ending.

This brings us to today. Though the diet has been a wonderful success for Henry in so many ways, he continues to have up to about 40 seizures per day. At this point we are out of FDA approved medications for Henry to try. Therefore our next option is surgical, and Henry will be undergoing a Corpus Callosotomy on July 31st, 2008. This procedure will surgically disconnect the corpus callosum (a band of fibers deep within the brain that connects the left and right hemispheres). The desired effect of the surgery is that when a seizure starts on one side of Henry's brain, it will not be able to 'travel' to the other side and cause his total loss of muscle control. The success rate of completely stopping these 'drop-attack' type of seizures is somewhere between 60-80%.

After many weeks of deliberation, researching, talking and praying, Paul and I are finally at peace with this decision and are now a little excited about what great things lie ahead for Henry. My goal for this site is to keep everyone informed as we move ahead with surgery and recovery. Henry has so many people who love him and want to know!! How blessed we all are for that! Now, I am likely the MOST computer illiterate person on the planet, but I will continue to work on adding some links and more informative things as I learn. The 2 weeks that is has taken me to get this put together already have been very therapeutic to me! Thank you for reading this, and for being here for Henry and us as we move forward.