RSV update

Since Dr. Wolkoff would like Olivia to receive at least one more synagis dose, we have started the ball rolling on that.  I had to call the insurance company last week to check on the status of October’s request (back when we thought we’d not make it into the drug trial).  So Dr. Friedman had to send them a new predetermination letter and a letter stating why Olivia needed the shot.  Dr. Friedman was taking care of that and hopefully we’ll be all set.  Olivia is due for the shot this Thursday so I’m hoping we’ll be set up by then.

Happy 20 month birthday Miss Olivia

Olivia is 20 months old!  She had a nice day. We went to church where she played shy with Memere and Pepere.  We did our typical grocery store run and then she took a VERY long nap.  After we played downstairs before dinner. After dinner we all played “Cordoroy” which is a game Maddie & Arnie made up a few years ago.  Olivia is a bit small to play so I carried her. Cordoroy consists of one person being “it” and carrying cordoroy the bear and everyone else chasing after the person who is “it”.  Picture much screaming and laughing.

RSV prevention appointment

We had our last drug trial appointment today.

Dr. Wolkoff was there along with Lee.

Olivia weighed in at 23 lbs, 3 oz which is down from last month. Odd. Her BP was much better (103/56) but her heart rate was up (132). Need to email Dr. Heller on that one. We couldn’t convince her to wear the oxygen lead, despite our best efforts of begging.

She showed off for Dr. Wolkoff – she was a MAJOR flirt with him. He said he could spend all day watching her play!

Again they commented at how advanced she is – that she’s as advanced as his 24 month old daughter.

He felt we should try and get one last synagis shot covered via insurance because they’re still seeing quite a few cases of it. So I’m working on that today in conjunction with Dr. Friedman. Fun, the insurance dance!

He commented that her left ear was light reflective(?) but red. The right ear was dull, slightly bulged and not red at all. He said if she starts another temp she’s got an ear infection but not to treat her unless that happens.


Olivia spiked a fever on Saturday afternoon. We were at a birthday party and I noticed she felt warm to me. I took her temp in her ear and it was 100.3º.  We left the party and immediately called Dr. Friedman’s cell phone.  She felt that since we noticed Olivia was sounding a bit croupy that morning, it was probably the start of an upper respiratory infection so we should hold off for now on going to the ER. That was fine with us.  Olivia wasn’t eating too much on Saturday, Sunday or Monday but today she’s eating MUCH better.

Talking and hanging with Auntie

Diana had a doctor appointment and was closed yesterday so Olivia spent the day with Auntie and Cole.  Cole called me at one point and asked if they could keep Olivia. Olivia had a BALL at Auntie’s and was talking up a storm.  “Juice auntie!” “Poopy auntie”.  Her talking is really taking off!  She even used a three word sentence with my parents over the weekend “Baby drink juice” in reference to feeding her baby some juice from her sippy cup.

She can also say the word “Ketchup”.

We have our last appointment with the clinical trial group on Thursday so I will update again after. Have a great week!

Olivia sings

Olivia has added a few new songs to her repertoire.  She now can sing “Yo Ho Yo Ho” as in “a pirates life for me!” and she can carry the “Peanut Butter & Jelly” song.  She’s got the tune down but most of the words are jumbled although you can make out “in my belly”.  And finally … She can sing “Tubby Time” which is a song Arnie and I made up when Maddie was a little girl. It’s to the song “The Right Stuff” by New Kids on the Block  “O-o-o-o-o  o-o-o-o o-o-o-o o It’s Tubby Time”.

Cardiologist Appointment

Today we saw Dr. Heller for an appointment. Olivia was happy to show off of course! She weighed in at 23 lbs, 10 oz and was 31.5″ tall. Her oxygen levels were 81% and her EKG looked great. We couldn’t get her blood pressure reading but based on Arnie’s notes from last week’s RSV prevention appointment, it was a bit high. So we reviewed my notes from the past 5 months and realized that all the appointments showed a higher than “normal” reading.

Dr. Heller did an ultrasound. Everything looked great minus a bit of backflow in her valve so she decided to put her on enalapril which is a blood pressure med. She is on 1 ml 2 times a day.

Dr. Heller was pleased overall with Olivia’s growth and developmental progress. She gave us the green light to travel to Florida – we’ll be there from April 28 – May 6.

Our next appointment will be June 8 at 8AM.

Two years and two days ago

Two years ago on February 27, our lives changed forever.  The anniversary actually passed by without me remembering until I was answering someone’s question about my views on abortion.  And then I remembered.  I shed a tear or two in joy … that my beautiful princess is here and doing so well! We are so truly blessed.


Haven’t done one of these in a while so here goes!

Miss Olivia really has been picking up with language skills lately. She says so many words:


patos (zapatos – shoes in spanish)


She is such a little monkey. She has started in on the “two attitude”. She likes to throw her toys on the floor to get a reaction out of us. She will put herself in timeout (in the corner of the kitchen where we send Maddie). She willingly goes there which is hysterical to me.

She has her Uncle Chris wrapped around her little finger. Completely. And he has her wrapped as well. On Friday evening Heidi was over without Chris. And a friend of mine Christine came over and I said “Oh good, Chris is here”. Olivia went FLYING to the stairs – thinking it was Uncle Chris. Needless to say she was disappointed.

Olivia LOVES to color. Give the child a piece of Crayola Color Wonder paper and the Crayola color wonder markers and she’s good for hours. Crayons used to be a big hit but she’s now all about the markers. I’m thinking it’s because she loves to be able to take the caps on and off. And with Crayola Color Wonder products – there’s no mess. It only works on the paper. As Martha would say “It’s a good thing”.

She’s still our great little eater. Last night I was making dinner and had a can of olives open. She ate at least 10. And she’s good for a half pint of blueberries in a sitting. Stir fry some red bell peppers and she’s in her glory. And the child can maneuver a fork like nobody’s business. We were out to eat this past weekend and she ate ziti with tomato sauce with a fork. Fine motor skills? Not an issue with this kid. She’s just amazing.

We have an appointment on Thursday with cardiology. I’m due for the appointment moreso than she is. I need the reassurance that only Dr. Heller can give us – that yes, she’s doing great; and yes, we don’t have to discuss the Fontan (third heart surgery) for at least another year.

Finally yesterday was the anniversary of the start of it all. It was the anniversary of us finding out about Olivia’s defect and the anniversary of being told to terminate her. And the beauty of it is that I forgot all about it until after 4:30pm. When I remembered I shed a few tears … of joy that it’s all turned out so well. And tears of gladness that I listened to my heart and stuck by my beliefs. And a few tears for those babies who weren’t as lucky as Miss O. I’m due to contact Dr. Death so expect that letter soon.

Maddie & Olivia play nicely together

Frighteningly so … quietly … to the point that I got nervous they were up to no good!

The vet was over to give the cats their annual checkups. Maddie & Olivia went into Maddie’s room. They shut the door. It was quiet. For ten minutes. Twenty minutes … time to check in on them.

I knock on her door. I gently open the door (since Miss O is known to hang out behind doors). Maddie has a pair of scissors in her hand and is giving O a hair cut. Then I look again: it’s the scissors from her doctor kit. Pretend scissors. They don’t cut anything

Maddie had Olivia in her baby stroller (toy) and had it parked in front of the mirror on the back of Maddie’s door. And they played. In her room. Without fighting. The entire. time. the . vet . was . there.

Could we possibly be getting to that point? Or were they showing off for company?

Either way, I’ll take it!