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.

The key to our neighborhood pool is on an Elvis key chain that we got during a layover in Memphis.   On the way to Denver, don't ask I didn't get it either.  The tickets were cheap.  It's a picture of Skinny Elvis.  Ruby keeps kissing the picture and saying "Dada".  I've tried explaining that it's not Daddy and that Daddy is at work.

I feeling some "Love Tender" will be on this afternoons playlist.

Happy Father's Day Chris!  This one is so much better than last year.  We get to celebrate with our Ruby at home.

I'll post more of an update in the next couple days.  I promise.  I also need to send out Thank You cards from Ruby's birthday. 

Ruby had her first swimming lesson today.  She did wonderful!  I learned how to hold her and help her kick.  We also did lots of activities with her standing in the water.  Hopefully this will help her learn to walk.  

I didn't get any pictures becasue I was in the water with her and Chris was at work.  Hopefully Chris will be able to come to the lesson on Thursday.  That way we can get some pictures of our budding Olympian.

No word on the blood work.  I'm not too terribly concerned.  I figure if Dr.H at CHOP was concerned we would hear from him.  Sometimes it's just so hard dealing with all the medical stuff.  We really want Ruby to have a fun and normal summer.    I'll get around to calling, but for now we're enjoying our little girl.  I know all the other CDH parents out there understand what I mean.  We are no way neglecting her care.  It's just for the first time we are able to relax and have some fun with her, even if it is short lived.  Plus knowing our team, if the results were bad she would have had an ECHO by now.

Ruby is holding steady at 17lbs 5 ounces.  I need to send a weight to CHOP on Monday.  I'm hoping she will gain a bit more over the weekend.  She's eating OK.  18-20 ounces of pediasure, 3 meals, and 3 snacks.  Some days she eats more than others.  She did eat half of a huge snicker doodle this morning at costco.  In fact she ate quite few samples while we were shopping this morning.  She also had her first Popsicle at the pool the other day.  At first she didn't like it, but after she got used to the coldness of it she loved it.  She had another one this afternoon, too. 

The past few days we've been going to the pool after naptime.  Ruby LOVES it.  She's not scared at all.  She gets right in and blows bubbles.  She even handles the "big" pool just fine.  She loves to sit on the side of the pool and slide off the edge while one of us catches her. 

Here she is  reading on the way to the pool.

Ruby and Dad playing in the big pool.

Here's some pictures from the week.  It's hard to get her to sit still long enough to get a good clear picture.  Some of them are a bit blurry but you can still see the cuteness.

We were told this week that our insurance won't cover speech therapy until Ruby is 18 months old,even though she's been getting it since she was in the hospital.  We're trying to get this all cleared up.  It's very frustrating and hopefully we'll be able to get it covered.

We took Ruby to local plant nursery this weekend.  She got to pet some goats and talk to some chickens.  Now if Mom and Dad could get the plants planted and the mulch spread the trip will have been a success.

Here's what Ruby thinks of the molar that is coming in. 

We haven't crankiness like this since the morphine withdrawal days.  Then we had "rescues".  Now ice cubes and snuggles from Mom have to do.   Also she's apparently had good lung development.  She can scream so well now.

We've been busy busy around here.  Last weekend we had 6 parties to go to!  it was crazy and fun.  Ruby had fun reading other people's books and playing with all the dogs.  She also learned how to climb stairs in order to get the dogs.  Luckily all of our friends have baby friendly dogs.  We're also thankful that our friends don't the trail of gold fish Ruby leaves behind her. 

We had a checkup with Dr. Dan this week.  He seemed very pleased with her.  She has gained 5 ounces in the last month.  She's now 17lbs 2 ounces.  He was pleased with the fact that she's off the Nexium for reflux.  Ruby had her BNP rechecked, also.  Her CHOP cardiologist wanted to wait a month after her last plane flight to see if her heart had calmed down.  It's a relatively new thing to use BNP for (NOT BMP) a screen for pulmonary hypertension.  I brought Dr. Dan a couple papers and as usual he was very happy to work with CHOP.  I can't stress enough how happy we are with our medical care here in Austin.  Ruby didn't handle the blood draw well.  They had trouble and had to stick her a couple times to get enough blood.  She screamed the whole time.  She also told the woman drawing the blood that she "all done" and then tried to rip off the band aide.

We went to a splash park this afternoon with two sets of twins.  Ruby had a lot of fun playing in the water.  She seemed to forget about her molar for a while.  She was so worn out from the water that she fell asleep during dinner.  She is running a low grade fever.  We're not two concerned.  Hopefully it's a result of being outside and teething.  We'll keep an eye on it.

I realized I haven't talked Ruby's favorite things lately.

Her favorite books are Tumble Bumble, Good Night Gorilla, and Momma Hugs.  She will search for these on the shelf and pull them out first.

Her favorite toys other than her books are balls and blocks.  She's been playing with both a lot lately.  She also LOVES doors.  She  loves to sit on one side of her bedroom push the door closed every time I push it open.  We've spent HOURS playing this game lately.  She giggles and just loves it.

As for foods we've added a few new things.  She loved Pad Thai at lunch the other day.  She really likes cherry tomatoes, cucumber, broccoli, green beans, raspberries,  blue berries, and black berries.  She will always eat hummus and avocado.  With the molar coming in she had been eating lots of bagels with butter and cream cheese.  I think bagels are chewy and feel good on her gums.  It's hard to list the food she eats these days.  She will try pretty much anything.  She does prefer nutella over peanut butter (don't we all).  She likes potato, bacon, cheese, and guacamole breakfast tacos.  She loves butter and real maple syrup on her pancakes.  She likes her mac'n cheese with butter and cream and a side of green beans.  She also really likes lentils.  Unless it's really spicy we always give her tastes of what we are eating.  

She is pulling up to standing all the time now.  She will cruz a little bit, but only if you hold her hands and help her. 

Sometimes I forget how tiny and behind she is.  While were at the s[plash park today we met lots of other 15 month olds who were HUGE and walking around no problem.  Ruby is smaller than most 8 month olds we know.  I know she's growing and we're doing everything we can.  It was just so obvious how small she is this afternoon. 

On that note her's a couple cute pictures.  We hope everyone has a good weekend.  I'll post an update as soon we get the results back from her blood work on Monday.

This is just a reminder of how much she has grown in the past year.  Her she was at 6.8 lbs one year ago.  That was a new born onsie.  She was 8 weeks old and had just come off of CPAP.