Ruby Hope McKee Starling

The last couple weeks have been crazy, crazy, crazy and we're behind on keeping everyone updated!

First off, I'd like to thank EVERYONE who came out and donated blood.  Your donation will help save lives just like Ruby's donors helped save hers.  It was actually my fist time to donate blood, so it was great to finally get around to doing something that I had been wanting to do for a long time.  It was really quite simple -- all I had to do was answer a few questions and then lay down and relax for a while.  It didn't really feel much different from getting a shot and I wasn't sore at all afterward.  As an added bonus, I learned that the pint of blood I donated burned about 650 calories to replace, so it was like getting to eat two 0-calorie, guilt-free hamburgers.  If you'd like to chown down on a guilt-free hamburgers or donuts or icecream and couldn't make it out, you can visit the Blood and Tissue Center of Central Texas, or your local Red Cross.

Ruby's Speech Therapist, Chelsa came out for the drive.  Our good friend Frances did as well.

Next, I'd like to say our trip to Philadelphia was great and it was so good to see many of our friends there.  We wish we'd been able to see everyone -- all our friends, all the nurses, all the doctors -- but we just couldn't.  We had a 6am flight to Philadelphia with a layover in Chicago, followed by two long, hard days of medical testing and exams, so Ruby and her parents were worn out after that.  For the most part, the test results were positive.  The Pulmonary Function Test (PFT) took about 3 hours because Ruby, true to form, laughed off the chloral hydrate sedative they gave her.  After about 45 minutes, she finally fell asleep and they were able to proceed with the test.  But about halfway into the procedure, she woke up, pulled off the mask, and smiled at everyone.  So we slipped her another Mickey Finn, listened to some more Baby U2, turned off all the lights, sang Twinkle Twinkle Little Star, and after another 45 minutes, she fell asleep and they could finish the first part of the test.  The second part involved administering albuterol, which is a bronchodilator commonly used in asthma inhalers.  But it's also a stimulant, so so promptly woke up again.  But this part of the test wasn't as important as the first part.  The results were good, though.  Her lung volume is higher than average, which they said is typical for CDH babies, but that doesn't mean she's able to breathe better than average.  She also had an echocardiogram and an EKG which were perfect, and they drew some blood for some labwork.  Her surgeon was happy to see her and was impressed we'd been able to keep her so healthy all winter.  She said that between her parents and her pediatrician, she was obviously getting excellent care in Texas.

On Wednesday, we went back for a development assessment.  We went into it knowing she was ahead in some things and behind in others, but it was hard to hear those things enumerated.  The psychologist said she is ahead in her verbal and social skills and on track for most things.  But she also said that she is behind on some of her play skills.  Specifically, the psychologist said that Ruby's play style is more like a 9-month old than a 12-month old.  It was a little hard to hear, but it's not surprising that Ruby is 3 months behind, considering she was in the hospital for 3 months.  The psychologist suggested we engage Texas Early Childhood Intervention, which we expect will be easier said than done.  When we explained to her that when we'd previously tried to work with them for physical, occupational and speech therapy but that they'd only wanted to provide service once a month (as opposed to the 3 times a week that was prescribed by the doctors and that she's been getting through our health insurance), she was appalled and suggested we contact a lawyer.  I thnk we'll give ECI another shot, but our expectations are low -- their webpage isn't even working right now.  Unfortunately, health insurance doesn't cover the type of therapy for developmental delay that she needs, so there aren't  lot of other options.

On Thursday, we went to the Philadelphia Zoo, the first zoo in our nation.  It's a manageable size and we saw most of animals there in a few hours.  Ruby especially liked the bears and otters, which were all "kitties", according to her.  She was also excited about the really big kitty:

We would especially like to thank Ben and Nichole (and their parents) for letting Ruby (and her parents) stay with them.  She had a blast playing with them and eating yummy meals with them.  Their generosity made a stressful trip a lot more bearable.  Ruby pulled herself up to standing for the first time on their back patio.