Merry Christmas from Henry!!

A beautiful Sunday for Henry

Henry's first day back to church today ~ he was back to his 'normal' self....screaming his fool head off! It was good to see him back in a bit of routine. THEN.....(drumroll, please) we actually went out to lunch!!!!!!!!!!!!!!! At a restaurant!!!!!!! I can't even remember the last time we have all gone out to eat with Henry. He was happy and content eating a little bread and 2 bowls of green beans ~ he could do without the chicken, if you ask him! We loved every minute of the mess he made all over the floor.

Our days are filled with chasing after Henry and his newly found 'freedom' of running around. We are all completely exhausted by the time we finally tuck him into bed at night, but it is the best exhaustion that I have known it quite some time.

I got a little 'trinket' from the hospital gift shop when we were there. This is what it says, and it just sums up my feelings today and as I think about the days to come:

HOPE

Whether a glorious revelation or a gradual glimmer,

the inner belief that meaning and purpose

are to be found in life's tribulations;

that peace and fulfillment are possibilities,

and that something positive awaits

as a result of one's prayers and perseverance.

Yep, that just about says it all...

Wow! It's been 2 weeks already!!

Well, today is our 2 week anniversary! I really can't believe that just 14 days ago we all went through that amazing, anticipated, horribly scary, very long and yes, wonderful day. It's not something that I ever want to go through again, but we have been counting our blessings since the moment Henry came out of surgery.

People have been asking me for the past several days...'When's the next update? I keep checking!' I have been thinking of posting something just about every single hour of every day since we have been home, but I had to get into the right 'frame of mind' too before I could do anything! Henry has been doing so amazingly well since we have been home ~ and we simply cannot be more thankful!!! He goes one hundred miles per hour from sun-up to sun-down and it is completely exhausting to anyone who is witness to his constant walking, running, climbing, dancing, tractor-riding, food-searching, singing and ball-playing activities!! He does NOT stop!! For all of these things we are more greatful than you can imagine...my dream comes true every time I see Henry trying to keep up with his brother and sister and neighbor friends outside. (He can't quite 'hang' just yet, but just give him a few months...)

Regarding the seizures ~ well, I guess we are not included in the small percentage of people who have 'total success' with stopping them. (This is the part that has been making me in a bit of a 'bad mood' lately!) He is still having several smaller 'twitches' each day. They seem to affect both sides of his body, though he has NOT had an incident of falling down, or bonking his head or face one single time since the surgery. On one instance he was even walking around and had one of these seizures and he did not come close to falling down ~ he looked at me, and I looked at him as if neither of us knew what to do! Then off he went.... Soooooo, Paul and I are trying to remember the goal of the surgery, which was not to STOP the seizures from happening at all (though of course that was our fervent prayer), but simply to stop them from causing him to drop to the ground so many times per day. In that, I must say, we have seen complete success thus far!

While we hold our breaths and look for the moment that we can actually say, 'It worked!', we are all having wonderful, 'first-time' moments with Henry every single day.....

• Tonight was the first time in over one year that Henry sat at the dinner table with me, Paul, Lane and Sam and we all ate together. He had 4 helpings of green beans, all his chicken and a half of a peach...and then he threw his bottle on the floor and laughed. And he was a dirty, greasy, beautiful mess at the end.
• He can order his 'own' diet Coke from Mr. Burger and likes to drink so much he can burp like his Daddy.
• He and I walked almost all the way around the block...he got a little lazy on me at the end, but he walked a very long way!!
• He ran after Lane and Sam and his friends Kade and Kamden tonight in the yard...chasing them as fast as he could go (he was way behind, but he didn't know it!) yelling the whole way...'Wait Up!!!' (It didn't really sound like that, but I know that's what he was saying!)
• We were at school for Lane and Sam and I suddenly realized I didn't know where Henry was. Well, where else?.... on the basketball court trying to shoot hoops with about 20 other kids ~ ooh that was a good sight!

So, needless to say, Henry is doing wonderful. He goes back to Memphis on August 26 for his first post-op visit! Paul and I continue to be amazed every day at the care and concern that people show us every single day. We have been overwhelmed with food, phone calls, emails, cards, messages, etc. Thank you for continuing to keep Henry, and all of us, in your thoughts and prayers as we continue the journey to complete healing. Look for our next update in a more timely fashion!!!

Love, Shelley

Home again!! Monday 9:23pm

Shew!! We made it!

It is so great to be home, back to Lane and Sam! They didn't seem to miss us too bad ~ bowling, swimming, shopping, sleepovers, eating-out, amusement parks ~ I'm not sure they knew we were gone!

The trip home was uneventful. Henry and I slept alot. Thank goodness...

One of our biggest problems at the moment is that Henry is completely spoiled 100% rotten (as if he wasn't before), and he thinks the entire world is revolving totally around him. He has absolutely zero intention of getting into his own bed and going to sleep. We have been trying for the past hour and a half. His eyes are about half open, but if we move toward the bed he pops his head up and shakes his head 'NO'! Then he screams. And screams. Well, I don't know if screaming and crying can actullay hurt him at this point, but I can't bring myself to think that it can be good for his healing head, so.....guess what, he gets exactly what he wants. He is currently snuggled in the chair with his Daddy watching ~what else ~ poker. Happy as a clam.

He did have a little seizure activity today that we could notice. It's important for us to remember that the surgery was not intended to actually stop the seizures from starting (although it can have that effect on some), but it was done to prevent any seziure from spreading across Henry's entire brain and causing his entire body to collapse. So, the slight arm 'twitches' that we have noticed are actually to be expected to some extent....it's the total head-dropping that we want to avoid completely. I think it's just too early to try to judge every little movement that we see from him, but Paul and I are staring at him 24/7 and it's almost impossible not to try to analyze each and every little movement.

We are anxious and terrified as we move into this next 'phase' to see what the outcome of all this is going to be in the end. We will keep praying, and I am going to do my very best to heed the words of Ms. Rindel (the nurse who sang with her beautiful voice in the chapel on Thursday) who said to me, "Stand with courage. Do it for your baby. Stand with courage."

Leaving Le Bonheur.....Monday, 10:55 a.m.

Well, we're packing up the last of our things, and getting ready to come home. Dr. Wheless came by one last time this morning and gave Henry the official thumbs up to get out of dodge. It's amazing how much stuff we have, I don't recall having 2 wagonloads when we got here!

Thanks to all for the prayers, well wishes, thoughts, concern, encouragement, emails, calls and love. It really made the whole experience much more bearable. We should be home around 5 or so and look forward to seeing everyone soon!

Shelley, Paul and Henry

7:55 Sunday evening

Good Evening!

It's been a lovely day for Henry! He got to take 2 bubble-baths, lots of wagon-walks, had a great appetite, only Motrin/Tylenol for pain and NO HEAD DROPS!!!!!!!!!

I'm almost too scared to think this could be real....

We are impatiently awaiting tomorrow morning for the 'all-clear' to leave the building. As much as we really want to get out of here, that is sort of a scary thought too though. It's alot like taking your first-born home from the hospital and wondering if you really know what you're doing and if you're really going to be able to take care of it!!

I am hoping that there is a picture attached to this post. The picture was taken by "Bernard-the-puppet's" Mom, in the OR 'waiting' area. This is the place I told you about where it is a hubub of activity with patients and parents, and doctors and nurses right before they head into surgery. Bernard is there to chat with the kids and his Mom takes pictures and gives the parents a CD later. She just snaps away while no one really even notices. So, this is one of the moments I told you about, when Dr. Einhaus got down and prayed right before Henry left us. There was another picture almost like it that was not as 'blurry', but Paul and I really loved this one because in the middle of the 'blur' you can see clear as a bell Dr. Einhaus and Henry's sweet face looking right at her. I love it.

Ok, Henry-boy is sleeping soundly now, and I'm waiting for Paul to bring back dinner. Will sign off for tonight. I hope to have a great report in the morning...nite nite!

Sunday 1:00 p.m. - Good News

Hi there - this is Paul again:

Dr. Frederick Boop, whom is the Chief of Pediatric Nuerosurgery here came by this morning to visit. He was filling in for Dr. Einhaus, who told us yesterday she was taking a couple days off to go camping with her kids. Dr. Boop asked if Herny had taken a poop, to which I replied, "Yes, Boop, there has been poop". Nah, I didn't really say that, but I think there might be a Dr. Suess book in there somewhere. He did in fact, ask if Henry pooped, these docs seem to have some infatuation with it. And the answer to that question is, in fact, yes.

OK, enough about BM's, Dr. Wheless came by later on in the morning, and said Henry could take out his heploc - the IV in his right hand, AND that he can go home in the morning! Henry tossed the football a little with W, and even said "ball" for him - we had sort of prepped Henry to show off a little for W so we could get the green light - and it worked. So we are just hanging out in 5 South, waiting for sunrise tomorrow. We did have a little excitement last night when the fire alarm went off 'bout 4 a.m. - but it was a false alarm.

All is good here, Henry is really back to his old self, and we are ready to see Lane & Sam! (who tried to kill their Grandma yesterday with a trip to Silver Dollar City) Thanks Grandma!

Hey everyone, Shelley here...Henry just got finished taking his first bath since Wednesday. He had a great time trying to give me a heart-attack trying to brush his hair with the toothbrush. He can't get his head wet at all until Thursday, so he thinks it's pretty funny watching me panic over every splash of water! I'll take this kind of worrying anyday ~ no head-dropping of any sort so far today....YAYYYY!!!!

Signing off for now. I think we're gonna go for a stroll in the wagon. Love to everyone,

8:30 Saturday evening

Ahhh...the sound of silence. Henry is sleeping very peacefully beside me, and Paul has gone to Outback to pick up some dinner.

Was a good day today. Henry is becoming more his old 'self' every moment. Still pretty wobbly and can't really sit up or walk unassisted, but thinks he can. He made me take him to the cabinet where we have stored all of our snacks and drinks to try to open it today ~ he still thinks he is starving. He has eaten well all day ~ light meals of jello, green beans and peaches. And he's lovin' the Sprite!

He hasn't had any vomiting or real pain that we can tell all day. He has only had 2 doses of 'regular' Tylenol so far! Wow....sort of crazy to me!

I went to the laundry room today to wash our clothes, and as I was about to come back into our room I saw some people looking at our door. When I walked up, they asked if this was my room...of course, I answered 'yes'. The sweet woman introduced herself as 'Ashley's mom', and I just knew right away... Most of you know about 'Henry's girls' at Cross Therapy, and Ashley just happens to be just one of them! Apparently, her parents live about an hour from here in Wynne, AR. Ashley's mother and brother took the hour-long drive (along with 'Douglas, the stuffed dog') to come pay a visit to Henry and us. This might not sound like a big deal on a 'regular' day under 'regular' circumstances, but to us it was like another angel coming from Heaven just to remind us what we need to know...Henry is under His hand, and we are loved. The thoughtful kindness of everyone has been rather overwhelming to Paul and me. Every single phone call, email, blog post and personal visit is a bright, shining light in our days. THANK YOU.....for keeping us all going.

Paul is home now with the steak! More updates tomorrow.....Nite nite.

Saturday morning, 11:30 a.m.

this is Paul - my first official post!

Henry had a really good night of sleep, just woke up once for a little pain medicine, then slept till 6:30. We are trying to get by today with just Tylenol, no morphine.....we'll see how that goes. Dr. Einhaus came by early and said that he was looking great, he has only minimal swelling, much less than normal. Henry stood up and took a few steps (with Dad hanging on) for her. Later, Dr. Wheless visited and has allowed Henry to remove all the wires/monitors that he had on. He still has the IV board on his right hand in case we need it for anything (like morphine). Dr. Wheless felt that Henry might be able to go home on Monday - so stay tuned for a definite answer!

Henry has had a few very slight "twitches" this morning - maybe 6-7 or so. These are the seizures that we have lived with for so long, but they appear to be very much reduced in terms of severity. They seem mostly confined to his left arm/side, not his whole body. Also, we saw these between 6:30 a.m. - 8:30 a.m. , haven't seen any since. Drs. Wheless and Einhaus are not surprised by these at all, as Henry's surgery was intended to stop the seizure activity from traveling from one side of his brain to the other, not actually stop the seizure from starting. However, the surgery has in fact, stopped ALL seizures for some kids. Also, Dr. Einhaus has told us that sometimes in the days immediately following surgery, there can be some seizures that cease later, we'll just have to see. Since Henry is not really walking around or even sitting up by himself yet, it is hard to tell if the few slight twitches that we have seen would have been a "drop", which he had so many of, before surgery. Time will tell.

By the way, Dr. Einhaus also explained to us that we should remove Henry's bandage on his head on Thursday. Just rub gently with soapy water till it comes off - that's it! Brain surgery.......big "band-aid" for a week.....then just take it off. It just seems amazing that is all there is to it.

At 10:00 a.m. today they had a pet therapy time downstairs, so we broke Henry out of room 5608 for a trip in one of Le Bonheur's famous red wagons. We got to meet Bonnie, the Giant Schnauzer and just stroll around the hospital for awhile. It's kinda quiet around here with Grandma, Grandpa, Aunt Holly and Uncle John gone, so we gotta make our own fun.

Well, the Little Einsteins' marathon is starting, so we gotta sign off for now.

10:00 pm Friday night update

Good evening!

Shew! The days are llloooonnnnggg!! Long, but good so far. Henry is tucked in and comfy in his new room. Sleeping soundly as of right now. It was still a day of lots of medicines, so he was fairly 'out of it' for most of the day, but he did get the strength to mutter the words 'ice' and 'ball' so far!

Several people have been asking 'what does he look like'? So I am going to try to post a few pics after this so you all can see. He really looks amazing...I never imagined after major brain surgery that a person could look so 'normal'! He has what amounts to a 'band-aid' going across the top of his head, and aside from all of the wires he's connected to, that's really all it is!

One more bit of good news today ~ just talked to Sam at home and he lost his second tooth tonight!! He is very proud and getting ready to head to bed so the tooth fairy can get busy!! I'm sad to miss that exciting time for him, but he's a trooper and is going to email us a picture!

We're going to try to get some sleep....thinking of everyone and still thanking you all for continued good thoughts and prayers. Much love, Shelley and Paul

Friday, 3:55pm

Woo-Hooo!!!!! Out of ICU!!!!

We've just completed the move to 5608. It is a lovely room with a view, couch and recliner. Now this is living! Ms. LaTonia is our sweet nurse until 7:00 this evening.

Dr. Wheless checked out the MRI from this morning and said that Henry's brain looks BEAUTIFUL! Dr. Einhaus did a great job maneuvering through all of the veins and arteries during surgery, and things look just as they are supposed too. What great news!!! Henry is still very heavily sedated, so not too much activity yet today, but we should be able to decrease that now as we get settled here. More updates soon!

Friday morning - 11:45 am update

Good Morning!

Well, I can report that Paul and I, and Grandma and Grandpa all slept soundly last night. I think that's about it for the sleeping. Holly and Henry had a bit of a restless evening in the ICU with a different machine beeping about every 30 minutes. Holly was very happy this morning....she had a few words with the nice nurses during the evening!

Henry was off to MRI this morning about 8:00. He was sedated again for the MRI and bone density scan, and hopefully this will be the last time he needs to be put to sleep. It's hard on the little guy to get that all out of his system. He is sleeping soundly now still in ICU.

Great news is that he has been 'cleared' to leave the ICU for a regular room!! We are just waiting for a vacancy to come available on the 5th floor so we can move to our next home. The 5th floor is supposed to be home to some of the 'nicer' rooms and the best nurses in the hospital, so we are anxious to get there!

We talked to Lane and Sam this morning and they are having a great time with Miss Mandy. It is a huge relief to hear their happy, content voices. They were making cinnamon rolls, watching Spongebob and getting ready to go swim at the Aquatic Center...what could be better?!? I miss them so much ~ I even miss Stella (kind of).

The hospital staff has really been amazing during our stay. This place is overflowing with kindness and generosity and love for children. A lady named Jennifer came yesterday to make sure Henry was comfortable and happy. She let us know that she can get Henry whatever he would like to make his stay the best it can be.....special toys, food, etc. Wow. Keep the good thoughts and prayers flowing. We should be able to tell a little better today what is going to happen (or NOT happen) with the seizures.....this is the scariest part for me now. More updates real soon.

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.