Ruby Hope McKee Starling

Ruby's Blood Drive will be April 10, 2010 at Rogue Equipment  500 San Marcos St.  Austin, TX  at 10:00 AM.

If you would like to make an appointment to donate that morning:

1. Go to www.inyourhands.org.
2. Click on Donate.
3. Create an appointment.
   This will force the donor to create an account before they move forward.
4. The next step is Find a Blood Drive. Search drives using the code "ruby". You don't have to put in the date.
5. Choose Ruby's drive from the list and make an appointment.

It's actual birthday so feel free to stop by and celebrate with us!

Ruby has been doing very well this week.  We are enjoying our freedom from appointments this week!  It's so nice to be able to spend our day according to Ruby and not having to work around therapy appointments. 

Ruby has discovered the kitty water bowl. I spend most of my day keeping her out of it or the recycling bin.  I usually just give her her very own water bowl and the floor gets cleaned on the process.

Ruby has started pulling herself up to kneeling and standing.  This how I found her after he nap Monday.

She is has also started crawling in down dog position.  Walking is probably not far off.  She's been eating and gaining weight, too.  At her check-up last week she was just barely on the 5% curve.  We're happy she's even on the chart!  Her reflux seems to have worsened this week.  We're not sure why but she's been spitting up more the past couple days.  She's still taking three  6-8 bottles a day along with 3 meals and two snacks.  It feels like all we do is feed her.

We've got a few busy weeks ahead of us with Ruby's Birthday party, Blood Drive, and CHOP check-up.  I'll try to update as much as possible.

As of today  Ruby is going to once a month PT sessions.  Her PT wants to track her until she's walking, just in case something pops up.  Ruby is doing great and even starting to try to pull up on things! We have been discharged from the Plagiocephaly Clinic, too.  Maybe just maybe one day we won't have to schedule our days around appointments.  We still weekly Speech and Ocuupational Therapy for the feeding issues.

Her eating is finally starting to bounce back after the cold/ear infection of last week.  We still have a few days of antibiotics left.  She's eating OK, but not the way she was before she got sick.  I've been told she will bounce back.  We still live in fear of having to put the tube back in.  Ruby is still willing to try new foods.  We are members of The Hungry Eleven dinner coop.  Once a week we get together for a play date and exchange meals.  We all cook enough for three families on Sunday and then trade foods.  It's been a great way to try new foods and form a community.  Tonight we had black bean enchiladas from Ben and Maddie and tomorrow we'll have risotto from Eamon and Hazel.  Judging from Ruby's response to the enchiladas I'd say they were a hit. We hope the other families are enjoying our contribution just as much.  Ruby even asked for more of the enchiladas. 

Ruby woke up this morning with goopy eyes and a wet cough.  Which bought her a one ticket to see Dr. Dan (her pediatrician).  Good news is that it's not in her lungs.  Bad news is that she has an ear infection.  Really though, I'll take an ear infection over other bad news we've received.  We have some eye drops and a script for antibiotics.  Hopefully she will be on the mend soon.

Another issue we've had is that our health insurance wouldn't pay for a Synagis shot for March.  Apparently we are only allowed five a year and she's had five.  Even though her Pulmonologist is recommending she get it.  We're too concerned, but it's frustrating.  I'm nervous about dealing with the insurance about next winter's shots since she's supposed to get them next winter, too.  The shots are expensive but 6 months worth of shots is less than ONE DAY on ECMO.   Through out everything this the first time our insurance has declined something.  We've been lucky in that respect, but it's still frustrating. 

I know cold and flu season is technically over here in Texas, but it's not in Philadelphia and we're headed there very soon.  I'm going to spray everything down on the airplane with hand sanitizer.

Other CDH parents, did you have trouble getting the synagis for the second winter before your baby turned two?  If so how did you get the shots covered?  I feel the need to start  preparing for a fight :)

This past weekend was the Kite Festival.  We packed Ruby and enough supplies for the afternoon up and went.  It was very apparent that we have kept Ruby sheltered and that she LOVES people.    As were walking to the festival she tried to say "Hi" to  the hundreds of people and dogs walking with us.  It was so cute.  She is so vocal and out going.  Once at the festival Ruby got to try some funnel cake and chase Hector around the blanket. Tim and Rhonda came along to help us kept track of Ruby.  Ruby even had her first funnel cake experience.  It wouldn't be a festival without funnel cake and snow cones.

We had hoped Ruby would take her nap in the stroller while we walked around, but she was just too excited.   We forgot to take pictures of the kites.  We too busy trying to Ruby from eating things off the ground or chasing after all the dogs.

The past couple days Ruby has been really congested in her nose.  We've been to the pediatrician and it's not in her lungs and her ears look good.  We've got the humidifiers going and are spraying out her nose as best we can.  Our guess is that she might have some seasonal allergies coupled with teething.  Ruby now has SIX teeth.  Three on the top and three on the bottom.  Due to all the congestion she hasn't been sleeping or eating all that well.  Hopefully things will improve over the next couple days.

We also got our schedule for her CHOP check-up.  We've got two full days of testing.  She's going to have a sedated Pulmonary Function test.  Other CDH parents if you want to share what this test is like please do so.  We've never had one and I would like to know what to expect.  She will also have a hearing test, echo, and ekg.  Then she'll meet with pulmonology, cardiology, and her beloved surgeon and neonatologists.  I'm glad we'll be seeing the Cardiologist too.  Hopefully he'll be able to shed some light into the possible heart murmur.  We are also looking forward to seeing all the people who helped save her life.  We're trying to figure out how we get in to visit the night shift nurses.

We're a little nervous about the check-up.  On one hand it'll be nice to have confirmation of how good she's doing.  On the other hand if something isn't right they'll find it.  We've become accustomed to our "less stressful" hospital free life.  Unless you've lived in a NICU for three months it's hard to understand. The thought of having to walk back through the doors of CHOP is exciting and scary at the same time.  All those months in Philadelphia were scary and tiresome.  It's hard to believe it's been year.

One last picture of our little fighter.

I know! I know!  Cutest Baby EVER.  She even gives kisses, if you're lucky.

It appears I am only getting around to posting once a week.  Things have been busy around here with Ruby on the move and life in general. 

Ruby LOVES magazines.  LOVES them.  She will crawl over to where we keep them and pull them out.  She looks at them and talks to them.  It's so cute.  She also loves our travel books.  She always pulls our Madrid book off the shelf.  We might be headed to Spain again sooner than we had planned.

Eating is going well.  She's solidly taking 22-24 ounces a day.  That is along with 3 meals and 2 snacks.  She has constantly been over 16 lbs for the past few days.  We've tried blueberries, papaya, tilapia, and turnips in the past few days.  She a little of each.  Her favorites are still hummus, avocado, yogurt, and cheerios.  She has decided that she doesn't need the tray on her chair anymore.  Yesterday she absolutely would not let me put the tray on.  Instead she reached over and started eating her food off her plate.  We're listening to Ruby and letting her join us at the table.  She has no problem about letting her opinion be known.

We finally got the swing hung in the backyard, just in time for spring. Chris made the swing set it's hanging from.  Our neighbor Katy comes over two afternoons a week to play with Ruby while I get some things done around the house.  Ruby just laughs and laughs with Katy.  It so funny for me to be at the other end of the house hear Ruby laugh while she's playing with Katy. 

Ruby made it on Little Tesoro's Website! 

First off I need to get the cuteness out of the way. 

Now that Ruby can sit herself nap time is battle of wills.  It's usually between her and I.  Sometimes though exhaustion wins.  She was fighting sleep so hard.  She would sit herself and talk to her bear.  Apparently she just couldn't stay awake any longer.

On another note, our "everything is OK" post last week might have come too soon.  Ruby's pediatrician heard a heart murmur last Friday.  He's not too concerned and is going to check her again a couple weeks.  Plenty of things can cause a murmur in a baby.  We do know that she has no congenetial heart defects.  Cardiologists at CHOP and Texas Children's have looked at her heart.  If he hears it again, we'll just tell the Docs at CHOP about while we are there.  Because if something bad is found that's where we want to be for it anyway. 

As for the eating Ruby is taking 22-24 ounces a day.  Maybe just maybe the NG tube is a thing of the past.