Monday, October 26, 2009

Nothing's Different and Everything's About To Change

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It's been a heck of a week here, (the last one, not this one starting). I've not written because it feels like there was always something 'big' happening the next day and I wanted to wait so I could get it all in one post.

Here's what we've been up to:

1) A Cardiology visit

2) A nutritionist visit

3) A visit to the LEAP program (just me)

4) Two Jaime/Laura Wedding Anniversaries
5) Auntie Abby back in town

6) Great Aunts and Uncles in Town

7) BNP results

8) Hair Cuts

and of course lots and lots of swimming.
Let's start with the heart shall we?

Of course there was the build up. I've talked about it before but this visit held a little extra weight as it was the one that was coming after 2 months of new treatment (homeopathy as well as CoQ 10) not to mention such a clear change in energy and digestion which I can only imagine helps the heart not have to work so hard.

There was that ever present fantasy of going through our ECHO and then having Rosenfeld come into our little room and say, in that voice that neither forebodes bad news nor hints at good, "well, his heart has improved significantly." I can hear it in my head. I've played that tape over and over again...just not in real life.

Alas, not this time. The let down was softened somewhat by something HunkyPants did say in real life though. He'd listened to Simon's heart, wrestled with Simon playfully over his Stethoscope, and watched him cruise around the exam room.

"Given his heart function and how he looks....I wish all my patients looked like Simon. He's just doing great!"

That sure was nice to hear. And it's true. Simon has just been full of life recently. Not just full of life but joy too. I can go on and on about "quality of life" this and "quality of life that" but you just need to spend 5 minutes with the little man and you get it. He is one happy little dude, ready laugh at just about anything and everything. What a wonderful way to walk through your day.

Then we met up with a nutritionist on staff in the GI department to talk about starting Simon on a whole foods diet. There's a formula out there that our insurance will cover (we think) that includes chicken, green beans, cranberry juice etc, etc, but the second ingredient is still corn syrup so we may in fact try a blenderized diet where we take fun real food ingredients and blenderize them to a pulp (actually a lot finer than pulp but it's a good catch phrase) so then it can be funneled through his pump tubing. Same calories, same nutrition, possibly even better, AND it's real food in his tummy. We've learned that a lot of folks out there believe that a blenderized diet is, in fact, the first step, or a first step, in getting the body and mind ready for oral consumption. In some weird way it makes total sense to me.

If the stomach is sending messages to the brain that "this stuff is crap and while it may be easy to digest, it's still crap and not giving me so much of the other things that make stomachs happy (good bacteria, etc)" not to mention the nasty nasty that it tastes like coming back up. Now, I know that vomit is not something that I've thought a lot about in terms of taste variations, but if that's the only way that the mouth is learning about taste, then it's even more gross to think about Simon's limited tasting experience (minus the choco pudding of course).

So Jaime and I were really excited to put in the extra work to see if a blenderized diet was an option and how to go about making sure that he was getting the calories that he needed along with the introduction of some real foods. We're in full faith that this is another step to getting Simon closer to eating through his mouth.

With our pediatrician on board and an amazingly fast turn around on the HMO red tape, we had an appointment within a week.

We didn't know who it would be (the scheduler said that's just how it goes) but we had the name of one nutritionist that was not recommended to us and the name of the ICU nutritionist from long long ago, Susan Bessler, whom we loved and appreciated having on our team when the whole Breast Milk vs formula showdown happened. Remember Susan?

When we were talking with the scheduler we were informed that Susan didn't even show up on the calendar, so we couldn't make a specific appointment with her, but if we wanted an appointment this coming Thursday, we could have it. She just couldn't say who it would be with.

Lo and behold, as we're waiting to be called for our appointment who should walk through the waiting room but Susan Bessler! And she has an appointment with us! I'm just thrilled. She knows Simon, she knows me, and oh yeah, she knows Simon. There's something so relieving about not having to relay the whole story, so much of which can't really be relayed with words, and to have the person that you're meeting with (to begin a new something or other) already know and be a huge fan of little Shimmy. It was awesome! And Susan was on a roll!

Within minutes of our talking she was already printing out a copy of a new 'whole' foods formula for Simon (that looks like it may even be covered under our insurance) as well as emailing me within 24 hours two separate blenderized food recipes that would offer Simon the same caloric intake but all sorts of new and exciting foods for his tummy to get to know. Very exciting. We'll keep you abreast (starting with some chicken breast) of how it all goes.

Next up was the PIP program, where Simon will be starting this week. It's essentially a daycare/preschool program for children ages 0-3 with developmental delays. We were referred by the Regional Center and had an intake session with the director about two weeks ago. She had said that she wanted me to come and visit the center without Simon so that I could assess whether or not it might be appropriate for him given his compromised immune system. It's a two and a half hour program that might have up to 10 other children and their guardians that includes circle time, singing time, organized play time, snack time, free time, and a support group time for the parents and guardians.

I'm alternately terrified and chomping at the bit to get started with this program for so many reasons. Here are two reasons:

1) It's the height of cold and flu season. We'll be in an enclosed space with 10-20 people and all of the germs that they bring.

2) We'll be playing and watching and singing and signing (they do a lot of Sign Language) with 10-20 other kids and adults!

I feel both on such a cellular level. I believe without a doubt that this will catapult Simon down his road of communication and movement and socialization in ways that only this kind of environment can.

And, I am so very, very frightened of him catching anything that might send us back into the hospital with a load too great for his still-dilated-and-operating-at-a-little-more-than-third-of-what-it-should-be heart.

(quick aside)

Growing up, I would take long daydream sessions playing out what super power I would want if I fell into a vat of radioactive waste, or got struck by lightning, or granted a wish by some alien race much smarter than our own. It was usually flying. There were variations depending on how I was feeling or what comic book I was into that week.

These days my super power would be the ability to see and suss out various germs. It would be along the lines of being able to see particles of dust when light hits the right way in your living room that desperately needs to be cleaned....but with color coding.

I know you're asking right now "Laura, if you could have any super power, why not have the power to heal with touch or thought or something like that?"

C'mon now, that's not realistic. That would never really happen anyway so let me have this 'more realistic' smaller super power fantasy.

Anyway, I would be able to see those wicked red flu germs flying through the air or those nasty green cold/sinus infection germs hanging out on people's hands and know right away who not to touch and what event we could stay at or leave. But what would my super power character name be? I'm taking recommendations.

Back to Simon and the PIP program. I visited for about 45 minutes (thank you Grandma Nola for hanging with Simon, watching trains, and talking about the meaning of life). I'm SO EXCITED to see how the little man takes to his new Tuesday/ Thursday morning activity.

I'm so excited to sit in a room with other parents and just know that they 'get it'.

I'm so excited.

Up next were the anniversaries. Jaime and I had two this past week. October 19th was our legal wedding anniversary (1 year) and October 22nd was our outlaw wedding anniversary (4 years!). We got to go out just the two of us on a date to an amazing restaurant in North Beach (Da Flora- Sweet Potato Gnocchi in two different kinds of cream sauce- sage and bacon!) and then later that week got to go out with Simon for Sushi where he tasted some miso soup and gnawed his way through half a lemon. That, and Jaime and I spent hours talking about how we just couldn't imagine a more perfect partner to share in the joys and challenges that have come our way since we've been together.

Abby Pike is back in town and Simon is clearly going to have some issues to work out with redheads and how he's got a preference for them. Simon loves him some Auntie Abby.

He also got to spend some time (outside of the hospital) with his Great Aunt Molly and Great Uncle John (who usually goes by UJ, now GUJ). We had a lovely brunch on Sunday and it was super special to have them see him now versus the last time they were able to visit.

Next up was our BNP test results coming back. The BNP measures a peptide that the heart releases when it's in distress. A score of 100 is a typical for a healthy heart. (Quick recap: Last time it was 547. At it's worst it was 3000.) We've been watching it come down consistently with a bump up here and there.

Simon's BNP right is 364!!! That's the lowest that it's ever been. It also means that his heart is approximately 90% less distressed than it was just about a year ago. 90%!!! less distressed. That was enough to make me cry. Say it out loud. Simon's heart is 90% less distressed. It just sounds so good to say.

Simon got a haircut. Mommy got a haircut. Simon looks a little like a republican, mommy looks like who he'd be trying to deny right the marry. Mostly they just look like twins.

Mama cut my hair. Lookin' good right?

Well hello you handsome devil. Come here often?

G'paw, I love it when you play pillow fight with me. AND I love it that Mama fixes my hair right away after.

Look who can now climb up into the rocking chair on his own now. That would also be Simon who took his own pajama top off after waking up and playing in his crib on his own for an hour while the mommies slept in. Gotta love that boy!