Ruby Hope McKee Starling

First off I finally got around to calling her cardiologist at CHOP about the blood test results.  The call had another purpose though.  We needed advice as to whether or not we can take to Colorado in August for a vacation.  I called her pulmonologist here in Austin and CHOP, also.  All three have said she is good to go to!  We can' t take her any higher than Denver.  We are going to drive so that the elevation change will be gradual.  We also had to agree that if she has any problems we  would come home.    We're excited to planning a road trip and becasue we get to see our friend's Becky and Jason.  As an added bonus I'll be pacing my friend the last 20 miles of a 100 mile race. If you think marathoners are crazy try hanging out with runners who run 100 miles races.  It should be a fun and busy week.

Ruby's BNP (Brain-type natriuretic peptide) has stabilized from our plane flights in April and May.  When I talked to the Cardiologist's PA he was very pleased with Ruby's BNP.  I knew when they hadn't called that everything was OK, but since I had him on the phone it didn't hurt to ask.  

We've also started the process for getting Ruby's Synagis shots covered this fall.  Our insurance has already said they won't cover them, but we are going to fight that.  Hopefully with the help of Ruby's team we can get them covered.  Everyone agrees that Ruby's chances of surviving RSV are significantly better than last winter.  She still has compromised lung function.  Plus no one really wants to find out if her lungs can handle RSV.  We are also battling our insurance to get Speech Therapy for her developmental delays covered.  We've been receiving speech therapy for her oral aversion, but we also need it for her play skills.  We haven't had a session in two weeks while we have been fighting with the insurance.   Our insurance has been wonderful and paid for almost everything.  Ruby's hospital stay was 1.6 million and we only paid 4, 000 of that.  It's just frustrating that we are so close to her being caught up developmentally and they are giving us trouble.  We are trying to avoid paying out of pocket for things. 

Ruby is going through a growth spurt the past few days.  We've had several days where she's taken over 20 ounces of  the generic pediasure.  She has also been eating larger portions of food at meals.  Her new favorite food is tomatoes.  It's a good thing since we have been getting a lot from our garden and our CSA.  She really loves cherry tomatoes.  It makes me a little nervous to see her put even a half of one in her mouth.  I fear she'll choke.  When she sees a tomato she points and signs for more and then fusses until she gets one.  She hasn't figured out that they are growing 10 feet from her swing in the back yard.  We also switched to the HEB (our grocery store) brand of pediasure.  She seems to like the taste better.  As an added bonus it doesn't seem to constipate her.  Since we switched we haven't had to give her any Miralax.

Chris was able to come to one of Ruby's swimming lessons last week.  Ruby has been doing so well.  She gets cold towards the end of the lesson some days.  She's fearless though.  We put her in a life jacket for the first time and she loved being able to float and kick on her own. Ruby also wanted to stand up on the green floating frog.  She was the only toddler that willingly got on the frog.  She was also the only who tried to jump off on her own.

Ruby has a new fascination with putting things on her head (as you can see in the picture below).  Which goes along with her new word, hat.  She has also started saying up and hot.  She signs and says the words at the same time.  Chris even had a conversation with her the other night while putting her to bed.  Ruby specifically asked for Goodnight Gorilla.

Chris: "What's wrong Ruby?"

Ruby: 'Ma Boo."

Chris: "Which book do you want to read next?"

Ruby: "Ni ni"

As you can see the mac'n cheese from our meal coop was very popular this week.

We've also added another baby sitter to our family.  Lauren comes one or two mornings a week to watch Ruby while I run errands and have some free time.  Since we can't put Ruby in a Mother's Day out program this is the next best thing.  I'm going to try to get pictures of Ruby with Lauren this week.  Ruby loves her and we are very happy to have Lauren.