Addie's Day...

Addie bug is staying over for a couple of days and we got to have big fun today!



Addie loved reading and listening to the same books Abbey loved when she was around the same age.  We had to pull out our original iBook computer to find a cd player in the house.  Good thing it still works, and it helped that it was Max's old one with Sesame Street stickers all over it!  It was funny to open it up and find all of Max's 5 year old tastes on there still.  I can't believe a computer from 2001 still works so great!

She woke me up bright and early wanting to watch shows, and play outside, and ring the neighbors chimes at 8:00am.  Aunty isn't so much a morning person, so I offered we blow bubbles if she didn't want to watch a cartoon.  She ate her breakfast, and played with bubbles, and watched her cartoon...that was hour 1.

Next was bath time, where George thought he should help by lapping up her delicious bubble bath water.  It was quite a juggling act to keep him out of her bath, but still in the bathroom with us so he didn't go downstairs to wake a still sleeping Max up.

After bath, it was beauty shop time, so I combed her lovely locks and curled them around my fingers.  Having had stick straight hair my whole life, I never get tired of seeing this little one's boingy hair!


Time for coloring while we I got Max up and his morning routine going.


Before we knew it, it was time for Max's speech therapy.  Addie kept herself busy on Abbey's computer playing games on pbskids.org, and Cbeebies , and finally ended up watching some Mickey Mouse videos from the 1930's on youtube...thank you youtube for always having a video for a four year old's ever changing want at the moment!

After therapy, Max and Addie drew pictures for each other.




We watched the Muppet Show, while I hurried with lunch and Addie loved Princess Piggy.  I kept telling her it's Miss Piggy, but she was not having it!  Princess Piggy it is!

Max's nurse came over for a respite visit, and Addie and I took off for the afternoon while Max got to enjoy some peace and quiet!

We first went to the park, where I was so busy pushing swings, and spinning merrygorounds for one that I didn't get a photo.  But, imagine it was very spinny, and very dizzy.

After we left there, I told her to close her eyes and rest while we drove to Whole Foods to get a sweetie.  Addie and I love our sweeties, and they are always special treats. She nodded off before we made it out of the parking lot, so I drove around for 30 minutes to let her sleep.

When I parked and turned off the car, she slumped down like this as she was waking up.  Funny that she kept in a good position all while I was driving, but as soon as the car stopped running she melted!


We went into Whole Foods and got a few groceries, and finally, the special treats...madeleines and flowers for Addie, and a juice box.  I got one of the madeleines for myself too...it was after-all a special sweetie day!



We ate our snacks in the car, then headed back to the house to unload the groceries and to pick Abbey up to go shopping.  Since she has to give a speech in class soon, she needs some dressy clothes, her least favorite type of clothing.

While Abbey was trying on, I let Addie try on whatever she wanted.  The store was empty, and I picked up after her.  But she was like a tornado going through trying everything on that sparkled!




And, it was the creepiest thing ever but she kept hugging all the manequins.


She would hold the men mannequin hands, and run her finger along the stomach or arm of the women mannequins, and then hug and kiss the children and baby mannequins.  I asked what on earth she was doing and she said in a little baby voice..."they're just so cute!"

Abbey found her outfit, and Addie got a treat too.

Pinky Pie gloves that she just had to wear, because she was soooo cold! (It was in the 80's)

We stopped to make wishes and throw pennies in the fountain.  Four pennies for Addie, because she's four.


She talked to her Mama and Papa, who are still in the hospital as Papa recovers from surgery.  She told them about her day, while she played outside in the rain.


She got an early dinner, and off to bed she went to listen to more books.  I let her pick 3 tonight.  And when I went up to turn the computer off, I found her sound asleep.

With a book on her face.


Tomorrow we'll get to play music therapy, and school with Max.  For now, I need to get to sleep since she's up and at'em with the sun!

I'll be back...

I'm sitting on my sofa, in my living room, all by myself, on the computer for the first time in 20 days without feeling any sort of guilt.

Max is home.

That means, we're all home.  And not shuffling back and forth from home to the hospital.

I've been catching up on some emails, and responding to people welcoming us home, and giving general well wishes.  I'm not at all caught up...just starting at the list of things to do.

So, for now...home things are calling.  I'll be back soon.

Baby Sister...

30 years ago today, I met my first baby sister.  She was my baby sister for a lot of years, before the baby-baby was born, so I guess now she's just my younger sister.

She's one of my earliest solid memories.  I was just about 3 and a half years old when she was born, and I remember bits and pieces of that evening.  My dad lead us through the hallway to see my grandparents in the waiting room, and it was dark outside.  He told us we had a baby sister, named "Angel". . . at least that's what I heard, and I thought it was so neat that I had a sister named Angel.  I finally got it right, that her name was Angela May, and we'll call her Angie.

My Uncle Daryl (Bubba), and Grandmama took me (and maybe my other sister and brother) in the elevator to see her in the nursery.  I remember Bubba telling me not to touch Momma's stomach because it was sore.  And Grandmama didn't have any shoes on, just in her stockings walking around the hospital.  She must have been tired or hot.   It was, August in Oklahoma!   Then I remember seeing her through the glass.

This weekend, I got to get away from the hospital for a while to take that baby sister out to a fancy dinner.  We laughed, and goofed off, and had a wonderful time.



Happy Birthday Baby Angie May!



 I'm so glad mom and dad rescued you from that dumpster under a Domino's Pizza Box!

Inside myself...

Never is it more evident to me that I am truly an introvert, as when we're in the hospital.

The mornings start at around 6:00am with a team of surgery fellow, residents, and medical students waking you up.  Most of the time I have just drifted off to sleep when they wake me to give me an idea of a plan for the day.  Not the best moment to be making clear decisions or making sure my questions are answered.

At 7:00am, nurse shifts change.  The night nurse comes in with the day nurse to go over everything she had done the night before, and give her an idea of what is to come for her oncoming shift.

In that same timeframe, the floor Resident comes in to do his/her assessment on Max.  A bit after that, the Senior Resident comes in for their turn to listen to his lungs, belly and heart and get an idea of what they'll be working on for the day.

Morning medicines start coming in and he's hooked up to the never ending pumps and beeps.

I try to hurry to the restroom and wipe the sleep out of my eyes, brush my sleepy hair, and brush teeth...or at least chew on some gum...before the Attending doctors, and specialists start their rounds.

We usually stop around 1:00pm to eat.  The morning is spent seeing the nine different teams following Max.  Each team has at least 2 doctors who come in for a visit.  They come in and want to know what our understanding from all the other teams is...and then give their advice for how things should go.

Before we know it, it is time for shift change again, and 7:00pm.  We need to get something to eat for dinner, and then one of us goes home for the night with Abbey and the dogs.

The other stays on and doesn't sit down until nearly midnight because the start of their day is happening, as the end of our day is happening.  Max is tired, and we are tired, but still - we are the only constant in Max's team.  We're the only ones always here.  So, we get to fill in the empty spaces.

Once is gets quiet...and I use that term so very loosely...and the lights go down...again, not even dark in these rooms...I feel like just hiding in a closet so I don't have to talk to a single soul.

I hit my limit this afternoon of talking.  I couldn't bare it another minute, so I took a walk.

I think it must have been unseasonably cooler today.  I walked outside and the wind pricked my teary eyes.  It was a beautiful day.  One of those days that tells you change is coming.  I walked through the gardens at the hospital and ran my fingers through the tall prairie grasses.  I listened to the gravel crunch under my feet.  I stopped and watched a bunny chewing on a flower.  And I didn't want to go back inside.

But, there was one reason I couldn't sink into my quiet place.  That is Max.  He needs me to be out of my shell, and speak for him because he can't.

Hopefully we'll find some answers soon as to what is going on with him.  And when we finally do get home, I hope to not have to talk for a while!

Ticking away...

The other day, my brother in law texted me and said, you haven't written on your blog since April, that has to be some sort of record, right?

I suppose it is.

I could give all the excuses, life has been busy, I haven't known what to write, Ive been writing over at Max's blog.  All true, but also, I just haven't taken the time.  Thinking that my energies are better spent elsewhere.  And if I have to update and write anywhere, more people care to know what's going on with Max, than what recipe I've cooked up, or the ramblings about my day.

But, I've found myself with some time to write.  I was hoping I'd find some time before the end of Summer, not realizing that I didn't want that wish to come about like this.

Max is once again in the hospital.  In fact, I guess he actually had a couple of procedures back in May that we were here for too that I didn't write about.  Now we're in for yet another emergency abdominal surgery.  This time is was caused by scar tissue from the other surgeries pinching his small intestines.

We are hanging out in the PICU at Children's.  He's doing okay today.  He's uncomfortable, and has a 6 inch (I think, it's covered) incision down his abdomen.  They left it partially open this time to heal.  Just the thought of that makes me queasy.  They said we'll clean it with water and a syringe.  Thank you God for nursing care at home, because this momma is not thinking I can handle that.

I have joked about what we're doing this summer to teachers and therapists, "We're not making any plans.  As soon as we make plans, Max ends up in the hospital.".  True to those words, we started planning a trip to Oklahoma to see my family on Labor Day, and a camping trip in a couple of weeks for my sister's birthday.

Seeing him laying in the hospital bed not able to do much of anything, both of those plans seem impossible.  And of course we don't know the outcome of his recovery at this point.  But, I can't believe much that we'll be going anywhere.

So, there's the update.  Life just keeps ticking away.  I am going to try to get back to writing, but I'm hoping to find some writing prompts, to actually practice my writing on here, rather than just updates.  We'll see if I have the time to do that!!

A new dessert...

Paleo "Almond Joys"...Steve and I came up with these a few days ago, dried dates, coconut oil, cacao powder, and an almond. These are insanely good!

The Sun for My Son...

My last class glass blowing class was this past Friday.  After skipping a week, I found myself really ready to get to the class and make my next piece.

I had a nice time chatting with Agnes, and the other class mates.  I told her about the last dream I had about glass after the bowl class.  That night in my dreams, I was making a sun.  I was telling everyone it needed to be bright yellow, for my son.

Agnes helped me think it through and I had help from Cody and Renee to put it together.  I did a lot more on my own on this piece than the other two pieces.  I wanted to try to do as much of what I learned this time, being the last class.



It's yellow, with spots of red, and orange, with a shimmer too.







Max thinks it's pretty cool too!



I had such a great time making all my pieces of glass art!