annual game day pic

This is one of my most favorite things that I started completely unintentionally. An annual WVU Game Day Pic. As you can tell, there's two years that aren't exactly game day. But close enough. Instead of doing a yearly school picture collage, I'm doing this. Go Mounties!

2011
Ted (6) & Sophie (3 1/2)

2010
Ted (5) & Sophie (2 1/2)

2009
Ted (4) & Sophie (1 1/2)

2008
Ted (3) & Sophie (6 months)

2007
Ted (2)

2006
Ted (1)

2005
Ted (10 days old)

and we're back

We're home and getting back to "normal." Ted's improvement in the past two days is quite amazing and pretty impressive. He's barely complaining of any pain but still gets a little sluggish and quiet when it's time for medicine (we're stretching out his rotation of Tylenol and Ibuprofen). But, as a whole, he's GREAT. If you didn't know, you'd never guess he had surgery a week ago. I find myself saying things like, "No wrestling, watch your head, don't tackle your sister, slow down, etc." a lot - especially today. We're going to have to find some things to do this week without getting turned in for truancy! I'm thinking the Muppet Movie and a trip to the WOW Factory to paint some ornaments might be in order. And probably half days of school on Thursday and Friday.

His stitches will come out next Monday. The patch on his head is slowly coming off. I'm a little anxious to see the incision. He's pretty self-conscious about the bandage and the stitches. He says he doesn't want to go anywhere until they're both gone. I haven't told him about a scar yet. We finally gave him a shower last night - he was GROSS!

Sophie rejoined the family today. Our house instantly went up in chatter level. Everyone was a little cranky when they went to bed tonight. She has to decompress from being gone a week. But we sure did miss that little lady. She brings a lot of life and humor with her. Ted was officially bored today so it was nice to have a playmate back - for Ted and for us!

A giant get well card from Uncle Andy & Aunt Courtney

Some fun visitors - Kelly, Ethan and Zach

We put up the Christmas Tree Saturday night. And, yes, that's the Marshall
game on in the background. All the other games were blow outs!

Painting the car Uncle Andy & Aunt Courtney got him - it's such a thoughtful
gift as Ted always wants to play with Ben and Andy's pinewood derby cars
when he's a Doh's house. Now he can have his own.

Loving his new Steelers blanket. It's super cozy!

Ben and I finally crashed on Saturday. Ted wasn't much for napping so we put on a movie and told him not to move from the couch. I'm super thankful for several days of meals. I never think I need them but am really glad when they come. I have some talented friends in the kitchen!

home sweet home - day 5

We're home! Thank the Lord! We got on all liquid meds and he's doing great. You can still tell when it's time for another dose. But we're on a good schedule and will keep it up through the night.

The doctor took off the wrap this morning. This dressing will come off on it's own
as we start to shower (cannot wait for that) Ted. It has an antibiotic on it. Isn't that snazzy?
His stitches will be removed a week from Monday. Not excited to see those.

Watching a little ESPN with Daddy this morning

Checking himself out in the mirror.

Ready to go HOME!!

His sweet ride to the car.

And his new bed at home.

We are all happy to be home in more space, jammies and sleeping in our own beds tonight. The swelling in Ted's face is almost completely gone and he's able to wear his glasses again. Sophie will rejoin the family Sunday or Monday. Dr. Collins suggested that Ted not go back to school all next week - more out of uncontrollable circumstances of kids touching him and the general movement and less controlled environment of Kindergarten. I'm thinking that maybe I'll send him in the mornings Thursday and Friday depending on how he's feeling. That's the most "academic" part of the day and maybe to get him back in the swing of things.

Thanks for all the prayers and love this week. We felt them big time. We are so thankful for so many people, circumstances and opportunities. Let's check "brain surgery" off Ted's bucket list!

happy thanksgiving - day 4

Not sure how it's happened this way, but Ben has had 2 bad nights with Ted. And tonight I'm going to have my 2nd good night with him. I'm starting to feel a wee bit guilty. I'm really encouraging him to go to the game tomorrow.

Yesterday evening, they took Ted off the IV anti-inflammatory he was on and didn't replace it with anything. Plus the nurse didn't wake Ted up every 4 hours like they should've to give him his Tylenol. So, the combination of the two (and the fact that we were never really on a great schedule with the two) was a pretty big setback as Ted's pain just got out of control. And when he's in pain, it's almost like Ted is possessed. It's weird and strange. There's no reasoning with him, no talking him through things, all he does is cry and fight and yell. So at midnight last night, Ben had a 45 minute "episode" and then again around 7 am this morning. Then Ted started throwing up again.

So we started from scratch. He got Zofran and went back on his two IV meds - he would get one or the other every 3 hours.

Ted slept till around noon.

With one break from visitors to get a vanilla milkshake.

Ben and I ate a wonderful Thanksgiving dinner from the Waterfront Hotel - thanks, Sara!

and watched football

While Ted watched a movie on the ipad

 Ben and I ate and snuggled up for an after lunch nap. Around 3:00 his movie ended and he was a new kid . . . again. Happy, talkative, hopped out of bed to use the bathroom by himself, wanted to play and draw and in general a beautiful disposition. Even some manners in there.

We spent the afternoon playing.

Ted's drawing of the hospital. The darker window on the taller building is his room.

We played Phase 10

played air hockey, fooseball, trains and little people and
did an impossible craft in the playroom

Ted took silly pictures of his already crazy face on the phone while he snuggled in bed with daddy

And I taught him how to play Mancalla.

We gave him a "bath" and actually made him get in bed for bedtime. Tomorrow we start oral meds at 6am. We've made a chart tonight for his oral meds that is until 9pm tomorrow - 6 rounds. If he takes them without whining, crying, fits and in a timely fashion he gets to choose pizza or a Cheddar's big cookie when we go home. We've talked a lot about how the Dr.'s won't let us go home if he won't take his medicine well. We'll see when the time actually comes.

Visitors Today:
Sam & Whitney Snyder

Hannah & Maggie Clements

Tanner Coombs

Doh & Aunt Stephanie

Mr. Locke

Visitors Tuesday (because I forgot):

Seth & Stacy Broadhurst

Jay Teodoro

Beth McCauley & DJ Currence

What I'm thankful for today:

- that Ted is doing so well and we're only working on pain management

- that we know he's going home soon

- his need to be here is not b/c of some lifelong or terminal illness

- nurses, doctors, pharmacists and cafeteria people that work on holidays

- pediatric nurses

- smart, smart doctors

- friends who love us

- family that helps take care of us, brings butterscotch pies and keeps our other kid

Tomorrow is the WVU/Pitt Game. The Blue Lot (aka the hospital parking lot) opens at 7am for tailgating. The game isn't until 7pm. So we're going to stay put on this end of town for the day. And we might bum some food from some tailgates instead of fighting traffic and going elsewhere - the cafeteria here is horrible! If we're still here tomorrow night, we'll be watching the game on tv and from our window. Hopefully we'll see some of you tomorrow in the Blue and Silver Lots tomorrow!

feeling the love - day 3

It's amazing that less than 48 hours after surgery, we have a brand new boy. Ted slept about 10 hours last night and woke up rather chatty. He even gave me some attitude. He napped while I went home to shower and then we had a very special visitor . . . SOPHIE!

They were really happy to see each other. Ted was up and playing and having fun.

We went for a walk to the Play Room. But it was closed.

So we walked back. Somehow Sophie got to be Ted's hand holder.
Which probably wasn't the safest b/c he's still a little wobbly.

Ben and I let Sophie look at the aquarium on the peds floor

And then took her on a date to the cafeteria.

 That didn't last too long for me b/c Ted had one of his "fits". He worked himself out of it and we walked back to the playroom to play.

Grandma, Gary Pap and Sophie left and we had a steady stream of visitors. Ted was pretty much shot so most people didn't even see him. He said, "Mom, please no more visitors." So, sorry to those of you who came and just hung out with Ben in the waiting room. 

Visitors Today:
Chad & Brandi Weekley - my cousin and her husband

Jeremy Slider - my cousin

Grandma & Gary Pap

Sophie

Bethany Underdonk - my dear friend

Nathaniel & Gina Lutyens - Bridgeport YL Staff

Andrew Archer - Bridgeport High School student

Greg & Cheryl Blaney - long time friends

Greg Isaacs - drove all the way from Charleston.
Last time he was in the hospital was the day Ted was born.
I think this locked him into Ted always!

Jay Conaway - Ted's small group leader at church

Allison Ferrell - my brothers hunting buddy's wife

Cameron & Sarah King - YL College directors

Whitney Snyder - YL leader and nurse at Ruby

He took a great nap and then woke up ready to rock and roll.

We spent some time in the playroom again.

Played with some new toys and visited with our 4 evening visitors

Ate dinner he actually asked for

Got that left eye open some - although the rest of his face has swelled quite a bit today

And got his fluid IV removed. Whitney (one of our YL leaders and a nurse at Ruby)
stopped by and showed her stellar tape removal skills! Fun to have her do that.

Ted has finished all of his IV medicines and is on all liquid medicines. He seems to be doing really well with it so far with managing pain. We'll see how we do through the night. He's eating well and drinking more. We only had one episode of nausea today and got that under control quickly. Today he talked to us, laughed, told us some jokes and made his opinion known. It felt g.o.o.d. We'll be sprung from here by Friday for sure.

You know, we have felt so loved. Truly. Family. Friends. Leaders. Committe. Church. Charleston. Morgantown. Fairmont. Places in between. Gifts. Time. Thoughtfulness. Seriously, thank you. Words do not even express the graditude. And really, it has everything to do with feeling loved and prayed over. I can't even tell you what that means to us. 

If you know someone that's in the hospital, offer to help them out. And if you don't, go through the drive through at McDonald's and drop a couple of bucks in the thing for Ronald McDonald House.

One last surgery note that someone asked about:
The blood vessels that were across the cyst on his brain were, in fact, important to blood flow around the brain. However, the doctor did not have to disconnect or reinforce them. The vessels were so stretched by the cyst that when it drained some, they laid nicely where they are supposed to. So nothing had to be done at all.

Ted is resting watching "The Jungle Book" that we borrowed from the Play Area. We had a great, great day!

brain surgery - day 2

Call it denial, call it what you want, but I really didn't want to ever say that Ted was having "brain surgery." The neurosurgeon (should that have given it away?) said it wasn't actually doing surgery on his brain, just around his brain. Or that's how I interpreted it. Until today I saw one of Ted's charts that said "craniotomy" and then his neurologist said, "Well, he did just have brain surgery." Whatever.

Today was a little rough trying to manage Ted's pain. During the morning hours, he would have "fits" where he yelled and cried and was flinging himself around quite a bit. It usually started by being completely frustrated or angry with something and he'd get himself all worked up. Then he's sort of just fall asleep and move on.

This is how I found him this morning when I came in. Notice his eye as the day goes on.

A brief moment of playing - about 3 minutes.

After quite an episode of taking out some of his lines, we dressed
him in pj's and we took about a 2 minute walk around the PICU.

 In the afternoon he started throwing up and his left eye started swelling shut and turning purple. He spent most of the afternoon in his bed moaning and growling when he talked. He just layed there. No tv. No music. No nothing. Just laid there.
 

He did love this new book from the Isaacs. I "laid" on his bed and read it several times. We were reading it one time before he was supposed to get some pain meds and he said it made his head feel better. 

Right around 6:00 pm they finally gave him Zofran for nausea. This was after he had tossed his meds several times. That seemed to settle everything down. We transferred to the regular pediatric floor and had a WONDERFUL nurse to get us settled for the evening. He was very sober all evening and didn't say much of anything.

Ted face-timed with Sophie tonight. This was the only smile we got out of him all evening (including the rest of the conversation). They both really miss each other a lot. I'm hoping this new found "love" for one another continues.

Ben kept calling him Mike Tyson. His left eye is completely swollen shut and purple

He finally fell asleep this evening easily and comfortably. A good end to a rough day.
Here's hoping for much improvement for tomorrow