I just got off the phone with Claudia and they are ecstatic. Oliver aced his exam! Here’s what she told me, pretty much verbatim. There’s a lot I don’t understand but maybe you will.

Oliver’s left ventricular function has improved, to the point where it is now within normal range! As I understand it, the pumping on this side was weakened by his aortic stenosis. Remember when we all cheered because the left side began pumping on its own? That was one of Oliver’s first big miracles. Now it has really stepped up to the plate.

The function of his right (aortic) side is the same. This means the gradient, backflow, stuff they measure with the echocardiograms. A few appointments ago the doctors were concerned about a membrane that was growing somewhere that could potentially block the flow; they’re not concerned about it now because if it was causing problems that would have shown up as decreased function. Dr. Rosenthal told them that Oliver no longer has critical aortic stenosis, he has mild aortic stenosis. Wow it feels great to write that!!!

The doctors are happy with his overall growth. He still has EFE (endocardial fibroelastosis), and they say they’ve never seen a case where it has gone away on its own. But, they say he may adapt to it. He is not completely out of the woods yet, but Oliver is “showing strong signs” of moving toward that goal. There is no surgery in his immediate future!

Next appointment is not until May. Great job, Olie! Everyone go out and celebrate! Thank you Oliver for putting life into perspective for us once again.

Damn! Where is the video camara when you need it?? Yesterday at cousins house, Oliver did the funniest thing. You know those tiny toy skateboards? The ones that are slightly bigger than a hot wheels car? Well Nathan is playing with it and here comes Oliver, he quickly steals it away. What dies he do, you ask- well he tries to ride it of course! He carefully positions his foot above the toy holding my hand and attempts to ride it. So cute- he remembered when he rode a real skateboard on the driveway with me just the other day. I can just imagine what he was thinking when he saw the same gizmo from home.
Dr O had Oliver weighed on Monday. He is now 19 lbs 9 oz. I suppose we won’t be making it to 20 lbs by our cardiology appt. Unless I stuff a couple of toys in his diaper…
We have sucessfully (by we I mean oli and I) have switched from 7 daily feedings to 6 no more night feeds!!! He now gets 165 mls per bolus. We are going to work up to 170.
Our big heart appt is tomorrow. Though I would be shocked if things were much different than last time, I am still anxious. I know from looking and being with Oliver that he is doing amazing.

Happy happy happy!!! That is Oliver usually. Lately he is showing a rebelious side that so far is adorable. He protests and will start to roll and if anything is in his way he launches it. He pouts with his lower lip, sooo cute! I can’t help bu laugh, though I try to hide it. Oliver is now walking at least 75% of the time. Sometimes even sporting very cute new shoes from grandma. He loves to wear them. Another cute thing is as soon as he hears the front door he proudly and happily states grandma.
Oliver has become a bit of a late sleeper lately he hangs out while I pump and watch tv. Last night he stayed up til 10:30. I hope this doesnt mean he needs to stop his naps.
Oliver had his first day at swim class today with Nathan and bella’s old swim coach, Michelle. She is great. I was wooried that Oliver wouldn’t like it but he did amazing. She gave him a ball to play with and that was all it took. Hopefully next week is just as fun and rewarding.

That is what I find myself saying ALOT!Oliver has an amazing vocabulary. Up! Outside! Bath! Otdog., Lela and the list goes on. Lela we think is either Bella or Oliver and otdog is unmistakable for hotdog. He also says Nathan but its more like a grunting yell, which says a lot! So demanding my baby, all his words are more like orders.
We went to the doctor on Monday and Oliver weighed in at 19lbs, 2 oz!Yeah finally out of the 18s. He is not yet on the growth charts but this is the closest he has got. He also had a cold. He had a bad night on Monday which led us back to our drs office on Tuesday AM only to find out his cold had turned into bronchitis! Oh Man, not again!

We just returned from visiting the whole family. What a great trip! Oliver looks healthy and happy. He is feeling very proud of himself these days, as he has recently learned to walk! Just a few weeks ago he took his first steps, and now he is walking very steadily. He still crawls about fifty percent of the time, but super fast. I saw him using his sign language well; his most used signs were ‘bird’ and ‘more’. Saying quite a few words too- I wish I could remember which ones. I love the way he says ‘mom’, it sounds more like ‘mam’. He doesn’t complain much compared to most babies, but he does notice when mom is not in the room anymore. He calls out to her or he looks at one of us and says ‘mom’ with a question in his voice. I also noticed him making two-word sentences, like ‘grandma mom?’ which means: Grandma, where is mom? Oliver is really into playing with Hot Wheels, and balls. We didn’t have a ball in Anaheim, so he turned a green apple into one. After a few days, that apple had tiny little bites all over it. Oliver would roll it, take a bite, roll it, take another bite. It’s really funny how good he is at whacking the ball, he is really very precise with his aim! Sometimes he backs up and gets a fast-crawling start, when he really wants to launch it far. Other times he is able to fly the ball into your lap from the ground, again with very good aim.

He has also developed a little mischievous sense of humor. You can see it in his eyes sometimes. Like when he’s taking a bath in the sink and he suddenly gets a hilarious idea, and next thing you know he just splashed a bunch of water at you and you’re soaked and he’s cracking up. I saw him almost sneeze once while Grandma was holding him, and in anticipation, she turned her head away quickly. Well Oliver thought that was hilarious and afterward he started pretending to sneeze, just to make Grandma turn away scared again. It really is funny stuff. Most of the time though we have to pretend it wasn’t funny at all, because it might encourage him to do it again. This can be very difficult sometimes!

Being at Disneyland with Oliver was really a treat. Once upon a time, being anywhere outside in the real world with Oliver was amazing and something we wouldn’t take for granted. Now we had the chance to be with him on his first ever trip to Disneyland! We couldn’t ask for anything better. Oliver did what he always does- amaze and delight everyone around him. He loved loved loved Mickey and all the characters. The Mickey statue in front of the Disney hotel was hands-down his favorite. When it came into view, he would start kicking his legs and waving his arms like crazy. This was without prompting. He just loved to see it! He loved the shows and parades. He stared at the colorful lights in the trees and pointed them out to us. He loved the rides he went on, for the most part. I saw him slapping his hands on his lap in time to the Small World music. He would watch the live dixie bands with pure joy on his face, his little body trying to dance while in mommy’s wrap. We had to pry him away quickly from the live characters, his arms reaching out to them and his voice telling us he didn’t like what we were doing. Oliver had a marvelous time in Disneyland, and we have photos to prove it! I haven’t sorted through mine yet, but if anyone else has some cute ones, send them to me and I’ll post them for you.

Ok so I completely broke down when I saw this posted on my sweet friend Clarity’s site, I felt so much when I read the words that I’ve sung so often without much meaning. I havn’t heard it in years…thanks Lisa!

“Wonder”

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they’re seeing

They say I must be one of the wonders
Of god’s own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god’s own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way

People see me
I’m a challenge to your balance
I’m over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god’s own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way

-Natalie Merchant

Wow, it seems only yesterday Tom and I pulled up to our house with Oliver for the very first time. Itt will be one year ago tomorrow! I remember trying to give him his dose of pain meds and it spilling everywhere in the car. We were all so nervous! I felt like we had escaped the hospital only to have unsure feelings of our new home life. its hard to think back on all the craziness. The thing that means the most to me is the unconditional support and love we felt from our family, friends, neighbors and even strangers. Everyday things got a little smoother and less chaotic. We became more confident in our nursing skills and began to trust our parenting intuition. I slowly regained my strength. have you ever read this entire blog from the VERY Begining?  Its incredible how far Oliver has come!!! How far we have all grown from our journey, how much life has changed and how it has blossomed. Oliver still is the most happy baby in the world. He wakes up happy. I can hear him from downstairs as I pump. He wakes up and says Mum? Mum? We hear him on the monitor and Tom drops everything to run and get him. He is down in one moment pointing the entire way towards the right direction. Tom prompting him “which way”?  As he turns the corner, my heart melts he has the most beautifully innocent and shy smile. So pure with love, Nathan lights up as soon as he hears him. Bella and Nathan cuddle up as close as Olie will let them.

Every single day begins this way- sooo happy and us so grateful! We are truley blessed to begin our days this way.
I will continue later…

There is lots of new things Oliver is doing these days. He is signing- he signs when he sees or hears a bird, to eat, more, milk and is waving. He clearly can verbalize words too. Mum, Mam are all for me!!! I love to hear him say this…He also says gog for the dogs, bi for birds, bal for ball and says dad, when he sees Tom. He is also pointing at the sky for the moon, and especially airplanes. Its such a fun stage he is going through!

He answers me when I call him. I do this alot when I am pumping downstairs and he is not in sight. I say Oliver, are you OK? And he says ah? We have lots of conversations. He can also stand on his own. I can say Oliver, can you show so and so how you stand? He will proudly stand. He is also walking back and forth on furniture like the couch and coffe table. Today I saw him for the first time using the wall to walk along. He is definately getting stronger and more confident. He also has a walker that he loves to push along. Tom added a 5 lb weight to slow it down a bit. Oliver loves music still, he bobs his head to the beat and smiles. He favorite thing to do these days is to play ball and play with Nathans hot wheels. Now he holds them and pushes them along. His ball playing is amazing! he is extremely accurate and loves to make baskets into any bucket available (occasionally a glass of milk). Boy can I brag or what? Life is really good for Oliver right now, his heart is working well for his body, he hasn’t spit up in a long time and his eating is coming along as well. I will try and post some pix later!

These have been in my inbox for a while. Some may be a few weeks old. I have a couple of video clips too, but I need to wait for Andrew’s help to post those. Enjoy!

Ingrid and I came to visit Oliver this past week. He looks better than ever. I’m trying to think of what to report but there isn’t really much new information. Oliver is still crawling super fast, and standing with the help of furniture. Mom says sometimes he lets go briefly, but he’s not standing on his own yet. He needs to strengthen his legs some before he’ll be ready to walk. He’s saying some words and using his sign language well. It’s kind of all typical stuff going on with him. Claudia is enjoying very much that he’s off all medicines. Dr. Rosenthal says they’ll continue to monitor Oliver’s heart function (next appointment is early February). He noted a slight decrease at their appointment at the beginning of this month, and when/if it reaches a specific value, they’ll perform an MRI (I think that’s what Claudia said) on his heart to get more information on what is going on exactly. After that, they’ll decide what is the next step. I don’t know what happened with the membrane, but it doesn’t seem to be the most critical thing anymore. Claudia says Dr. R was pleased with Oliver’s growth. The appointment helped Claudia to validate that her own assessment of Oliver’s health was accurate- he really is doing very well right now.

We had lots of fun watching Oliver play with his Halloween chicken and petting his Chica doggie.

Claudia says the gradient went up a tad- not what they want. But Oliver is now completely off meds, for the first time ever! No more appts until Feb!!! More details to come later.