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:
Sunday, August 17, 2008
A beautiful Sunday for Henry
Thursday, August 14, 2008
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
Monday, August 4, 2008
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
Sunday, August 3, 2008
7:55 Sunday evening
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,
Saturday, August 2, 2008
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.
Friday, August 1, 2008
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.
