10:45pm update

Well, hopefully our Henry-boy is going to get some good rest tonight. He has been wide awake and quite restless since waking up from the surgery. I think he is like his Mommy...codeine makes his face itch! However, the morphine and valium seem to send him right into la-la land!

Holly has convinced Paul and I that we need to go get some real sleep before we try to proceed with the rest of our week. So she is snuggled up next to Henry in his ICU suite and they are both happily tucked in.... Exhaustion is slowly setting in for all of us, but we are going to try to get at least a few hours of good sleep before Henry wakes up ready to play ball tomorrow! hee hee!

He has a big day ahead starting in the morning. MRI and bone density scan scheduled for 8:00. Then we will hopefully be moved into a 'regular' room on the 5th floor.

Signing off for tonight. One last prayer today that all this works for sweet Henry. We all felt great comfort today with so much love and prayers coming our way. Thank you so much. It was a day of huge anticipation, anxiety and a strange, calm peace. Love to all, Shelley and Paul

3:15 Update

Well I have finally laid eyes on my beautiful boy. He looks perfect ~ just like the angel that he is. He obviously has lots of tubes and wires, but otherwise he looks just like he just woke up from a nap. The incision on his head goes basically from ear to ear, across the top of his head with just a small bandage on that. They just had to cut his hair where they made the incision, so he even has his cute hairdo still!

He is coming off of the anesthesia, so he is rather 'fidgety'. He's on lots of good meds to keep him comfortable and still for most of the night. Two people at a time only in the ICU, so we have all been taking turns. Get this....the little man even tried to CRY when his Aunt Holly told him she was leaving to get his Daddy!!! What?!? At least I know he is all in there!

Ok, so don't stop praying now ~ this just HAS to work to STOP Henry's seizures. We should know fairly soon (within 24 hours or so) if the surgery is a success. He has made it through the hard part, so keep praying for the results we need.

Oh, and ladies.....you can EAT!! (You know who you are!)

Much love...next update soon.

1:30 Update

HE'S DONE!!!!! Dr. Einhaus just came to talk to us. Henry will be in ICU in a few minutes and we can go see him. She said the surgery was very difficult...Henry has lots of big, juicy veins in his brain that she had to work around, and she had to go very deep in the brain to 'do the work'. However, no harm was done and she is very pleased. Now we will go kiss and love him and wait impatiently to see if it has worked. Don't stop praying now!!

Next update soon. Thank you so much for the continued messages and prayers. They are filling our day with love and hope.

12:15 Update

Just talked to Wendy. The doctors have finished with the microscopes! They have completed the actual 'goal' of the surgery (disconnecting the corpus callosum), and will now begin to close everything up. She said this is a little like digging your way out of China, and will take about 1 1/2 - 2 hours. But, she said the doctors were all stepping back and admiring their handiwork, so I think that means they are happy so far!

11.11 AM

Wendy just called to update us on the progress. Henry is stable and they are in the "tedious portion of the surgery." Next update in one hour. Thank you for your prayers...

10:30am Update

Wendy, our nurse, just called. Dr. Einhause has been operating under the microscope for about 45 minutes now. Blood loss is very minimal, and Henry is stable and doing well so far. Keep praying.

Henry is in surgery

It is 7:59am. We took Henry down to the OR at 7:00. Met the wonderful team of nurses and doctors. Wendy is our nurse and will be calling us about every hour with updates.

You must use your imagination, but I want to explain that the pre-op area is a literal 'beehive' of activity. Doctors and nurses everywhere, children waiting with their parents....probably 40 physicians and nurses and in walks Dr. Einhaus. She came to ask if we had any more questions...and then she asked if we wanted to pray. Of course we did, and she got down on her knees and prayed for Henry, her nurses and herself. We are in good hands.

Will update as soon as we can.

Headed to bed.....

Ok. Here we go....off to bed. It's sort of like Christmas Eve. I think.

We have had a day full of boring hospital rooms and wires AND wonderful new visitors!!!! Henry's Grandma and Grandpa, Aunt Holly and Uncle John showed up after many hours of travel to get here. Wow-wee!! Henry was ready to show off the play room to his new guests!

We also got a visit from Mr. Lackie and Mr. Mike (one of the pastors at Hope Presbyterian Church here in Memphis), and had a great visit along with some wonderful prayers for Henry. So many people have given of their time and resources to help us while we are here...our gratitude is something we cannot express with words.

Daddy is spending the night in the hospital here with Henry, and Holly and I are headed to try to get at least a little bit of sleep before we head out. I know that everyone is doing this already, but this is my request tonight: please pray for Henry's peaceful sleep this evening, the peaceful rest of the surgeons, doctors and nurses and their skilled, talented hands to be at work tomorrow. We are in the best of hands and are confident that miracles are going to happen.

Surgery is scheduled for 7:30am. We will send Henry on his journey about 7:00. Look for updates often. Good things will happen....updates early and often in the morning.

Henry's first Non-Keto Dinner coming up!!!

Ok, here's what's on the menu for dinner tonight:

Spagetti with Meatballs
French Fries
Honey glazed baby carrots
Cornbread muffin
Rice-Krispie Treat

Wahhh-Hooooooo!!!!

Oh, and Aunt Holly is threatening to bring a cake from Rick's Bakery tomorrow....wow.

Also, Dr. Wheless just came in with an update of what Henry's EEG looks like so far today. Unfortunately, his seizure pattern is exactly the same as always. BUT, on a very positive note, he said that his brain activity and function when he is not having a seizure actually looks MUCH better than it did one year ago. He thinks this could be one of the reasons that we have all noticed such a great change in Henry's behaviors and activity levels. Yay!!!

All checked in ~ and a bit of good news!!!

Here we are:

LeBonheur Children's Hospital
Memphis, TN
901-287-7815 (direct line to room 7815, our room until Thursday am)

Got here about 8:30 this morning. Henry was a champ being hooked up to the EEG, even though he hates every single second of it. He will be having lots of blood work today, neurological evaluation and a bone scan for bone density later on. Yuck.

Our nurse when we checked in was Danyelle - our favorite nurse from our visit last year! She was expecting Henry and had written "Danyelle loves Henry" on his board! We are off to a great start!

GREAT NEWS ........'W' was here just a bit after we checked in and HENRY IS OFF THE DIET!!!! Though we were so fortunate that the diet worked in many ways for Henry, he has become increasingly more unhappy in the past month or so with his food situation ~ or lack of food! We have been slowly decreasing his fat ratio for the past several weeks, and as of today he is pretty much free to have what ever he likes! We had a grilled cheese sandwich, pretzels and a peanut butter cookie for lunch!!! Yay!!

It's about 12:45, and it's going to be a very long day...not much to do in a tiny room hooked up to 28 wires. We are headed to the play room now for a little break. Next update soon...

We made it!

Well, we arrived in Memphis last night about 7:00pm. Henry had a HUGE time partying on Beale Street! He danced to some live 'blues' music, petted the horses on the carriage rides, watched the gymnasts doing amazing flips down the street and rode on his Daddy's shoulders for most of the evening.

After a meal at Silky O'Sullivans, we headed to our new 'home away from home' (well the one that is not the hospital..). We are so grateful to have been offered the opportunity to stay at Robyn Nolen's aunt and uncle's home here. Margie and Jimmy Lackie have an amazingly beautiful home with a guest house out by the pool, and we felt like we were staying in a luxury hotel last night!! We all had a wonderful nights rest and we woke this morning to have coffee and fruit poolside! THANK YOU, Margie and Jimmy for hosting this very grateful family!

We all miss Lane and Sam so much already ~ I hope you had a great time at Meg, Zach & Mollie's. We love you.

Ok, it's off to LeBonheur we go....

Henry had a PARTY!!

Wow! What an evening we had...a party held in Henry's honor was hosted at the Nolen's Fayetteville compound last Thursday evening! Our dear friends John and Robyn Nolen, John and Jennifer Lewis and Jim and Sara Widmer hosted the event to show Henry how much he is loved by so many and to wish him well on his new journey to 'seizure-freedom'!! (fingers crossed here!)

As Paul and I have gone through the past several weeks, it has become very apparent how much we go through life, and sometimes (ok, alot of times...) it is easy to take our friends and families for granted. This little adventure has shaken us to the core and reminds us every single day how much we rely on the love of true friends and family. Soooo many people have simply dropped what they are doing (literally) and come running to help a friend in need, or simply remind us how much Henry is loved.

This party was a great celebration of the love that so many people have for Henry...THANK YOU. I am posting the link to the Nolen's website, where you can see lots of fun pics of the night! Just click the link, then click on 'Party for HENRY" at the top right and you can view a slideshow.

web.mac.com/nolenhogfans

Meet the Team!

Yes, I know it has taken me a while to get our 2nd post up! (Remember what I said about that 'computer illiteracy'?)

Anyway....I wanted you all to meet the people who have become so near and dear to us over the past year! These are the people who are dedicated to making the lives of so many children, not just Henry, better. I have seen most of them in action myself (well, except for our surgeon of course...but that won't be long!).

We are grateful to them in so many ways for their knowledge, skill, perseverance, patience (with Mommy's and crabby 2 year olds), dedication, compassion, and love to children who are not even their own. As we all think of Henry and pray for his healing and peace, please don't forget to pray for these people ~ and the many others who go 'un-named' that work alongside them everyday. They are truly 'Hope for Henry'.


Dr. James Wheless ~ The man we lovingly refer to as 'W'. It is amazing to research and read about this talented, kind man. He travels the world sharing his ability to help children in need. He is full of knowledge and has an amazing, peaceful bedside manner.

Dr. Stephanie Einhaus ~ I hope to meet this well-respected, skilled surgeon only one time.


Jennifer Jerles, Clinical Dietician at LeBonheur Children's Medical Center ~ Jennifer and I have talked on the phone almost every day for the past one year. I am so not kidding. She has been there with us from day one of this crazy Ketogenic Diet, and has never once become frustrated with this very frustrated Mommy. It has been an amazing journey through calories, special birthday cake recipes, snow-cone juice, vitamins, diarrhea....you name it ~ she has been right there with us, and helps every step of the way. I long for the day when this diet is G-O-N-E, but will forever remember Jennifer and her compassion, knowledge and love.


Henry's Girls at Cross Therapy Services, Fayetteville, AR ~ 'Henry's Girl's' are pictured above...Jacklyn, Alison, Amanda, Ashley and Chere'. (He has a few more 'girls' who aren't in the picture too!) When this whole adventure started, we were advised that Henry should begin physical therapy...so we went where the pediatrician sent us. After about 4 months of Henry's unhappiness and unwillingness at each of our visits, someone asked me if I had ever visited Melinda Lunn, and Cross Therapy. I went the next day...and the rest is history. These girls see Henry 3 days every week ~ we're going to 5 days a week after the surgery! I witness something special each and every time I am there. Henry goes for physical, speech and occupational therapy. Not only has Henry progressed and learned soooo much in their care, (he jumps from my arms to get to them....well, most of the time) but the countless number of 'special-needs' children that they help every day is amazing to me. They are PATIENT and kind and loving and nurturing and PATIENT and comforting and PATIENT. I could NOT do their job for a million dollars. Thank you, for loving Henry like you do.

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.