Ruby Hope McKee Starling

We head to Oregon early tomorrow morning.  We're almost all packed and ready to go.  The marathon is Sunday in Eugene, Oregon. 

I've got a lot to update everyone about.  We've decided to go back to every other week PT appointments until Ruby is walking.  We are going to go to the clinic for those appointments.  Her PT feels that Ruby will benefit from seeing the other kids and using the the equipment there.  It's not cold and flu season so we're going to do it.  October will be here soon enough.  It's time to get out and live a little before we are locked inside all day again.

The constipation hasn't really gotten much better.  The only sure way to get her to go is Pedialax.  All of hate to use it, but it works.  The Miralax and pediasure with fiber seems to be helping a little also.  We have also started weaning her Nexium.  So far we've had no problems with that.  The big news is that Ruby weighed 17lbs before her bath tonight!  Hopefully she will continue to gain while we are on vacation.

Ruby has a new found love of blackberries.  She also tried watermelon and cantaloupe, but those were quickly tossed on the ground.  Here's a picture of Ruby after our picnic lunch at the park on Tuesday.  Can you tell she likes blackberries?

This is how we cleaned up from our blackberry feast.

We'll post from Oregon over the next few days. 

Friday night our friends Rhonda and TIm got married! 

We all got to get dressed up for the occasion.

On Saturday we wen to Ethan and Mason's 1st Birthday party.  As you can see Ruby was really excited about it all.

We are still battling constipation.  We've switched to pediasure with fiber and are adding miralax to the mix.  Twice last week I gave her pedialax suppositories.  I haate doing that as it really really upsets Ruby. 

Other than the pooping issues Ruby is doing well. She into EVERYTHING and we'd have it no other way.  A year ago we were very close to loosing her.  Chasing her around all day is so much better than holding her hand while she is on ECMO.

Ruby had her one year check-up with Dr. Dan yesterday.  She got 4 shots, which she handled like a champ.  We went out for sushi as a treat afterward.  Ruby will eat the California rolls.  No raw fish for a couple more years.

Her appointment was a long one.  We discussed every thing that CHOP suggested.  Dr. Dan agrees with me that the Developmental Assessment wasn't really fair and was way too picky.  Don't get me wrong we know Ruby is delayed.  She's three months behind in her physical developments.  She's just now started to pull up.  She doesn't seem to have any desire to walk.  As we all know Ruby doesn't do something until she's ready.  I'm glad to hear that he's not too concerned, yet.  He did say that if she's not walking by 18 months he'd be concerned.  We've got 6 months to get her going.  As a parent I'm feeling much better about her development after talking to Dr. Dan.  I'm still not convinced the assessment at CHOP was fair.  They didn't really seem to take the fact that she had been sedated the day before, traveled, and her schedule was off.  I know I didn't really feel like acting like 33 year old that afternoon.

The most upsetting thing about yesterday's appointment is that Ruby has fallen off the growth curve.  We knew this might happen.  Her weight gain has slowed since coming off the NG tube at 10 months.  She hasn't lost weight.  She's just not gaining as well.  For now no one seems to concerned and we're doing everything we can to fatten her up.  As for the constipation Dr. Dan agrees with me that it's because of the formula switch and not a sign of an intestinal problem.  We're hoping to control it by diet.  I've switched her to pediasure with fiber.  We are pushing prunes and apricots.  I made her rice pudding with prunes instead of raisins for breakfast this morning, hopefully she'll like it.  I used heavy cream instead of mils and lots of butter.  It smelled heavenly.  I'm trying to get this all under control before we leave for Oregon next week. We've also been given permission to add Miralax to her diet to help control this.  If we haven't seen a improvement tomorrow I'm going to get her GI Dr. involved.  Ruby's intestines aren't coiled like everyone else.  I don't want to take any chances that this could be something more.

I also need to update everyone on her blood work from CHOP, but it'll make this post way too long.  We discussed it with Dr. Dan.  He's agreed to order the tests that the CHOP cardiologist needs in a month. 

We are going on our first family vacation next week.  It's a well deserved and needed trip.  It's more of a vacation for Chris and Ruby than for me.  I'll be running a marathon the third day we are there.  Either way we are looking forward to exploring Oregon with Ruby.

Her are some pictures from our week in Philly.  Ben and Nicole made super hero costumes.  Ben was the Human Torch and Ruby was his side kick Fireball. Nicole completed the crime fighting trio as Spider Woman.  Ruby LOVED playing with Ben and Nicole.  it was so cute to see her chase after them.  Ben and Nicole were very kind and seemed to enjoy sharing and playing with Ruby.  We couldn't have asked for a better family to have befriended.  Plus Brad and Diane kept us well fed the whole time. It was so nice to leave CHOP after a long day and be able to sit down and to a good home cooked meal with such a nice welcoming family.  Some of the pictures are blurry, it very hard to photograph three very busy kids.

I need to write an update about Ruby's BNP and how iwe are going to watch it.  For now though I'm gong to talk about food.

We've been instrcuted to fatten her up.  We've switched to Pediasure for formula.  We've also started chocolate and peanutbutter.  We're still adding butter, cream, and oil to her foods.  Hopefully all of this will get us back on the curve.  She dropped off the charts again.  Coming off the NG tube she never lost weight she just stopped gaining.  It appears though that all the changes have sent her digestive system into a shut down.  I am currently awaiting a call from the nurse.  We've tried everything including prune juice and it's just not working.  She's terribly uncomfortable.

The constipation could have something do with the TWO bowls of rice, beans, sour cream, cheese, and avocado she ate for dinner last night.

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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. 

We are were at HOP all day yesterday. 7:30 am tp 6pm and we're headed bak for one more appointment this afternoon. 

So far all of Ruby's tests are coming bak PERFECT! 

I'll update more this evening when we have more time.

Please note that the "SEE" key on my laptop will not work.  It's very annoying.

We are so glad to be able to celebrate Ruby's 1st Birthday!  She's come so far in one year.  It's hard to believe that one year ago today she was fighting for her life.

She didn't know what to think about the candle.

Mac'n Cheese, turkey, and brocolli for her birthday dinner.  Then a birthday cupcake with chocolate ice cream for dessert.

It's been a busy day today.  I'll post a better update about the blood drive once we get to Philadelphia. 

Thank you to all or friends and family who have supported us this year.  Ruby is thriving in part to all of the support we've received. 

We had her party a week early due to our trip to CHOP and it simply was easier on us.  Ruby didn't seem to mind.

Our friend Nedra Made Ruby's cakes her.  I think they turned out awesome.

It's early and I'm getting ready to head out for my "long" run.   For those of you wandering, marathon training and motherhood requires some juggling.  Like daily 4 :15 wake-ups.  I'm not complaining, but Ruby sleeps later than me every single day.  The good thing is we both take  nice long naps in the afternoon.  Only 4 more weeks until my marathon. 

Ruby has really blossomed this week.  By blossomed I mean begun moving fast.  By the end of the day all books with in her reach are on the floor and have been "read".  It's to the point that I don't even pick them up until she's asleep at night.  That way they are ready and waiting for her "read" them the next day.  She will crawl right past toys to get to a book.  She also loves to get a book and sit in your lap and flip through it.  Sometimes she doesn't even want you to read it to her.  She wants to do it her self.  I have feeling we're in trouble.

I've discovered that Ruby hates to ride in grocery carts.  Now that we can take her to the grocery store.  It's been a learning curve for all of us at HEB.  For the short ten minutes she'll tolerate riding in the cart she spends it grabbing things off the shelves.  I have to double check the contents of the cart before I checkout.  Last week Ruby seemed to really want me to buy A LOT of Ramen.  Apparently she's ready to move into a dorm room, already.  Luckily she loves being in the baby carrier and I can finish the shopping that way.  It is so nice to be able to get our shopping done.  Since we've brought her home we have had to have  lots of things delivered or spend all day Saturday running errands.  I plan on enjoying this freedom for the next couple months.  Really is wonderful to be go places.  There is huge difference between having a healthy baby that you choose not to take out and one that absolutely can not go out. 

As for other happenings in the McKee-Starling household, our at Ella has been sick.  We took her in for a teeth leaning and she had an allergic reaction to some medicine.  She ended up on steroids with an IV.  We've also had to watch her pretty  closely since she got home.  Ruby has been really good at petting Ella softly while she is recovering.