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,