Ruby Hope McKee Starling

We all know ECMO is the scariest and/or best combo of letters for a CDH parent.  The second is MRSA.  Ruby has had a rash on her face for a couple weeks now.  it's not bothering her, but it's not getting better.  We saw the pediatrician yesterday.  She said to put bactrium and aquaphor on it three times a day and if it's not better by Wednesday to come back.  Then we'll consider antibiotics and testing for MRSA.  I also jokingly told her that I wasn't kidding when I said I never want to talk to an Infectious Disease specialist again.   The rash is looking better, but not great today.

We found two pairs of shoes that will fit over Ruby's orthotics.  A pair of running shoes and the chucks pictured above.  I was so afraid we'd have to get her some really ugly shoes, but as you can her fashion has not been compromised.  Who doesn't love a girl in a green polka dot dress with pink high tops.  Don't even get me started on the cuteness factor of the little sweater.

Let's just hope we don't have to see an ID Doctor ever again.

I swear on Monday I sat down to write a post and now it's Friday and I never got it done.  The more mobile and interested in her surroundings Ruby gets the less and less I seem to get done. We've spent most of our mornings at parks and therapy.  Then this morning we had a breakfast play date followed by a couple check-ups.  I made the mistake of letting Ruby play in the wood chips before her appointments.  It took four baby wipes to clean her up before we walked into the offices.

We picked up her orthotics.  She's only wearing them for an hour at a time for the first few days.  We haven't gotten a picture of her in them yet.

Then we saw her GI doctor.  We discussed if there could be some other reason as to why she's not gaining weight.  He's going to run some blood work to make sure.  He thinks she's just petite.  He said she looks good and is very energetic.  We also discussed sign of bowel blockage that could result from re-herniation.   We know the respiratory symptoms to look for but wanted clarification on the GI things to look for.  It was a good appointment and it was nice for Mom and Dad to hear that we are doing all we can feeding wise.

On Thursday afternoon I decided to see just how long Ruby would swing.  A lot of her tantrums have been a result of having to get out of the swing.  So at 4pm I settled down with a cup of coffee, water, and my knitting.  I made sure I had water and snacks for Ruby.  At 5:45 she started showing signs that she was all done.  Finally at 6pm she signed all done.  We got with no tears and went inside to have dinner with Daddy.  Two hours of laughing and eating in the swing.  If nothing else our girl has stamina. The above picture was taken towards the end of our marathon swinging session.

We've been busy and I haven't taken any pictures.  Our good friend Tim, who moved into our home for us while we were in Philadelphia, lost his family home to a flood.  Last week when tropical storm Hermine hit Texas, some parts of Austin got 18 inches of rain in less than 24 hours. Tim's parents awoke to ankle deep water that rose to chest high within minutes.  They had to be rescued by firefighters in the middle of the night.  They had been told that they did not live in floodplain and didn't need flood insurance.  Their house was built in the 70's and has never flooded before.

Chris, Ruby and I have been doing everything we can to help the family out.  Chris, along with about 50 other people, went out yesterday morning to tear out carpet and dry wall.  Our friend Mike wrote about it on his blog.  Ruby and I baked muffins and cookies. Then made several trips to buy supplies and food for all the volunteers.  While we have certainly felt the love from our community of friends in Austin, it always amazes me to see it in action.  The people who came out and helped Tim's family were the same ones who rallied around us when Ruby was diagnosed and in the hospital. 

If you have a moment, think some good thoughts for Tim's family.  I've seen the devastation a flood can cause first hand.  I can only imagine how they feel.

Well we were so excited about Ruby's weight.  Then we heard from our dietitian, and Ruby's still not gaining fast enough.  I'm not sure what else we can do.  We're on super calorie formula.  She gets three meals and three snacks a day.  Some days I feel like all I do is try to get her to eat.  Between snacks and meals and clean up it just feel like a lot.  Some days we back off and other days we really push her to eat.  I'm not looking for advice unless you've got a baby who won't eat.  We just feel kinda helpless.  There isn't a magic thing that's going to happen.  Ruby will eat when she wants to eat.  Personally I think she's looking pretty chunky.  She's got some fat rolls on her wrists and thighs.  If only I had gone to medical school.

Ruby was fitted for orthotics for her feet and ankles.  Her feet turn out and she walks like a sumo wrestler.  This probably inherited from me as I had the same problem as a baby.   Hopefully these will help her walking.  She's still not walking on her own.  She's taken a few steps, but nothing major.  We're nearing the 18 month mark that her pediatrician said he wouldn't worry until after that.  Again, I'm not sure what else we can do.  She's in PT, we do all her homework. 

I'm starting to consider carrying around pictures of her on ECMO so I can say "Look how far we've come in 18 months."

Ruby's vocabulary is growing.  It's so fun to communicate with her.  The words of the week are "BOWL!" and "Zebra".  All horses are zebras at our house right now.  She also starting to let her needs known.  She tells us when she wants a bath by banging on the bathroom door and saying "Bath, Bath."  She lets me know when my runs should be over.  I took her for a run on Tuesday and about 30 minutes in Ruby started saying "All done Mama!" and "Hot, Hot Mama."  It was warm outside.  All the other runners we saw would laugh and tell me I was apparently getting my speed work in.

Ruby has also started picking out her clothes.  After breakfast she goes into her room and pulls clothes out of her dresser while saying "Dress, Dress."  In the pictures below she picked out her shirts and pants from several choices that we lay out in front of her.  She will even try to put her shirt on.  She far from able to do it, but she tries.

Now for pictures!

Ruby was dancing to music yesterday morning.

Ruby making her own music on the key board that Grandma Ruby and Grandpa Herbie gave me for Christmas in 1988.

Here' Ruby helping me make bread yesterday afternoon.  Kate, I'm not sure she's gonna let you have your bowl back.  It's one of her favorite kitchen  things. I need to go find one of our very own.

We're having friends over for a play date this morning.  I'm trying to decide if I'm up for finger painting with three toddlers this morning.  It might be a coloring and blocks morning inside in the AC.  We are still having 100 degree days here.

Yesterday we had busy busy day.  First we had Brains For Lunch.  After that we let Ruby pick out a couple new books.  Then we headed to Terra Toys to get Ruby her very own broom and harmonica.  Then finally we headed to Phil's Icehouse for dinner followed by Amy's Ice Cream for dessert.  For those not in Austin trust us when we I say we had an "Austin" Day.

Ruby loved Amy's.  I know her resent weight gain is due to all the ice cream she's been eating.  We only have ice cream after dinner.  We always ask her if she'd like a bowl of ice cream.  Now after every meal Ruby says "Bowl!?"   We've had several discussions about how we only have ice cream after dinner.  It didn't stop her from asking for  a bowl after breakfast this morning.

First off Ruby's weight last night was 18.5 lbs.  Woo-hoo!  Look at our chubby girl and her pigtails.

We all got our flu shots this week.  Ruby was also fitted for orthotics for her feet.  Her feet turn out and an colapse.  Her PT and OT feel that the orthotics will help her walking.  She is really close to walking.  Her balance just needs to get better.  She has taken a few steps a couple times.  Those seem to happen when are not ready with the camera or really watching her.   We were really torn about getting her orthotics.  She's been through so much and it feels these are just one more thing for her to endure.  she needs them though.  If they help her walk and avoid all the foot problems I've had then it's worth it.  I'll post pictures of her new shoes when we get them in a couple weeks.

It's College Football time.  While Chris and I aren't football fans we have friends who are.  Last weekend we watched the game with our friends Brian and Shelley.  Ruby loves their dog Dudley.  This weekend we got an invitation to a Tailgate.  I thought it would be a few lawn chairs and coolers.  Nope our friend Gabe had a trailer with a big screen TV.  A full BBQ buffet.  IN fact his tailgate was almost as big as our backyard.  Ruby enjoyed playing in the mud and eating tamales.  We didn't stay long because it was over 95 degrees and it was just to hot.

Ruby has started to realize that crayons are for coloring and not for eating.

We've already started limiting Ruby's exposure to germs for the Cold and Flu season.  We've stopped going to Toddler Yoga and Story time.  In few weeks we'll have to stop taking her to the grocery store and really crowded play grounds.  This winter is going to be a bit harder to keep her isolated.  Especially since she requests to "go" and "outside" daily. 

Incase you Sunday has been as hard as as ours has.

Ruby was up at 2:00 am demanding to read a book.  Chris worked ALL night, too.  We're all little sleepy and cranky this morning.  Hopefully as the day goes on and naps happen we'll all beck to our normal selves.  Enjoy the video.

When Ruby brings home her first date, and I've gotten Chris to put the shotgun away, I'm going to pull out these pictures.

She got my underwear out of the hamper and put them on.  She was so proud of herself.  I couldn't stop laughing.  It was hard to good picture and this was the best one I got.

That block is part of a shape sorting set.  Apparently she found the perfect fit.

Now for the fun part of the week.  I scored a HUGE bag of bead necklaces at Goodwill.  I cleaned them up and put in them in a basket for Ruby.  We've had hours of fun with them this week                                                                          .

Ruby has a 17 month check-up next week.  She'll get her flu shot . Hopefully we'll have some good stats to post, too.

We hope everyone has a great holiday weekend. 

We have finally gotten back into the groove of things.  The washing machine is working and the garage has dried out.  

I'll start off with pictures from our last day in Denver and our drive back.  Ruby is a champion traveler. We only had one blowout diaper that required a bath in a truck stop bathroom. 

Ruby and the baby giraffe.  She thought the zoo map was far more interesting.

Goodnight Gorilla.

Ruby and Becky.

Relaxing after a long day on the road.

We forgot to take a picture in Oklahoma.  Ruby wouldn't put down her book even to sit on Texas.

ON Saturday we all went to Matt and Kate's wedding.  Ruby was the life of the party.  At one point she only wanted to be held by Kate on the dance floor.  Ruby knows how to be the center of attention.

As you can see Ruby was getting tired.  She loved the glow sticks and refused to give them up even in the car on the way home.