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.