Thursday, October 15, 2009

Bless the yoginis

It's been quite the ride here since Tuesday. The rains came and with them great change, some dips, some climbs, and some pudding and some drinking! (not me, Simon, although I thought about it yesterday. The drinking not the pudding)

So here's the skinny.
Tuesday we were home bound because of the rain. The first part of the morning went by smoothly (we did get out for a short dog walk with Simon being the only one staying dry- thank you BOB weather shield). We played, we listened to music, we watched a video.

We didn't vomit.

That's right. I said we didn't vomit and by 'we' I mean Simon. Not only did we not up-chuck but by 11:00 we'd had two really nice poops and not a bit of reflux and/or gagging.

I don't know why I thought it but I figured that since we were having such a nice morning, why not have some no pressure food play while we're just hanging out. No high chair, no big fanfare, just a little teething biscuit to start. A little syringe with water/juice and we're off.

And he's taking it all and putting it to his mouth. My heart is beginning to beat faster in my chest and I have visions of my child eating by mouth.
So I put a little Pediasure in a sippy cup just to see what'll happen.
This is what happened.

You can hear me catch my breath because it was so friggin' awesome. I couldn't believe it. And you only get a little slice. He put that sippy cup to his mouth a good half dozen times, swallowing a little each time. He licked a yogurt pretzel, slobbered all over a teething biscuit and smiled through out all of it. No gagging, no barfing, no turning his head away in aversion. The planets were aligned, the element of hunger was present just enough, the pediasure was just the right temperature. So what it was in the bathroom?! So what if we didn't leave the house all day? Simon was on a development tear. I was high.

PROBIOTICS!!! (Loud Hallelujah Chorus)

But let's start from the very beginning. It's a very good place to start.
Back when I was pregnant with Simon I took a yoga class at the Piedmont Yoga Studio with a teacher called Cynthea Denise. It was an intense class and for several reasons prenatal yoga was not for me. Still, it stuck with me and several months later when I was taking a break from being at the hospital (Barry and Larry were visiting so it was almost exactly a year ago) I ran into Cynthea in our neighborhood.

She asked how the baby was and of course was shocked and saddened to hear about Simon's condition. Since then we've run into each other several times in our neighborhood and she always asks how Simon is doing and says that she thinks of us and sends love and light.

Last week we run into each other outside of the local bakery on one of our morning loops and she says she's been thinking of us. She's recently done a wonderful workshop with this woman and during the class she learned something that made her think of us.

Mind you, I've only taken one yoga class with this woman almost two years ago and maybe run into her half a dozen times since.

She said that in this workshop that she took, her teacher made this amazing connection between cardiovascular strength, digestion, and the immune system. She thought of us and Simon's condition and how he needed to start Probiotics (the good bacteria found in yogurt and such).

What amazed me first was that she was thinking of Simon at all. Once again, that from seemingly no where comes this care and love for this little being. Second was that she had listened so well to the little tidbits of information that I had offered regarding Simon's condition (that he had been on hardcore anti-biotics, that he's tube fed, that he struggles with daily vomiting nausea and reflux) during the few and brief on-the-street-fly-by- meetings that we'd had. And thirdly (back to the first one really) that she'd been at a workshop, heard some new piece of information, and was connecting it to some person that she hardly knew but that had clearly made some kind of impact on her.

I later on in our conversation learned that she'd been a pediatric nurse...but still.

I figured it couldn't hurt, it might help, and let's check it out with GI and Dr Gleghorn and go for it.

We started Monday night and I gotta say, there's nothing else to attribute Simon's drastic new self to. It's been three days now and while Wednesday he was not seeming to be interested in food again at all (and I was crushed after the high of Tuesday- F***ing roller coaster), on Thursday we had an OT session that actually made Paula, our feeding specialist, cry. She had to get up and get a tissue because she was so emotional.
Wouldn't you be if you saw this....
Yes, chocolate pudding really makes his blue eyes pop but damn it if he didn't take his spoon and dip it into the mound of pudding and BRING IT TO HIS LIPS!!! I would say that the little man did this no less than a dozen times. There was swallowing going on too!!! Even some straight up licking!!
Now it's not the typical bringing a spoon to a mouth that we think of and if you saw anyone else doing it you might wonder why they were playing with their food so much and not just eating it....but holy cow it was amazing to see Simon doing it. We're oceans and continents away from getting off enteral feeds but I feel like we've at least landed on the planet of oral eaters and made first contact. Wooooo Hoooooo!
Chocolate pudding it is. Chocolate pudding for everyone!!
Really, I think it's the probiotics. I think all of a sudden Simon is digesting his food at a normal healthy rate and digesting it well given his healthy let's clean everything out poops. He's different. He actually wants to bring things to his mouth now that the vomiting and nausea have significantly decreased. And who wouldn't?!! If you're only experience of your mouth and stomach was things coming out, and not pleasantly, why would you ever think of putting something in there? Not to mention I think he may be experiencing hunger for the first time since he's been in the hospital (minus that one fun time when he was bacterimic, only on maintenance fluids , and fighting for his life).
Thank you Cynthea Denise. Thank you for holding us in your heart. Thank you for keeping inconsequential (to you) details in your mind so when something came along that might benefit Simon, you made the connection right away. Thank you Probiotics.
So as I write this I'm remembering and feeling the high of the last couple of days. It's incredible.
Simon is just at the tail end of what will be at least a 2+ hour nap and there's a weekend with not much planned ahead of us. I am breathing in and out trying not to focus on the fact that while he fell asleep this afternoon there was a definite sweat starting. We have a cardiology visit coming up this Tuesday complete with blood draw and Echo Cardiogram. Two months of homeopathy and CoQ10 plus now probiotics and I'm fantasizing again about the "his heart has improved significantly" option. I'm holding out the hope and not letting myself get too excited (especially since he's sweating right now) but it's a possibility right? It could happen.
And it could happen that we stay on this slow, very slow, infinitesimal, road to getting better. I don't even want to think about the sweating and backtracking option . Don't want to.
Not gonna.
Here's to living in Simon's big teaching. Be in the moment. Right now is a really good one.

This one's for Blarry. Go Lions!!

Post Sippy Cup Face

Simon's new 'smile'

....And there it is for reals
Probiotic love to all!

Monday, October 12, 2009

Adventures in the Wilderness

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We got back safe and sound from Yosemite last night. It was great and hard and quite a trip.

Friday, Laura, Simon and I met up with our friends Joan, Dre, Kim and Sommers (4 years old) at the house of Skeeter, Saun-Toy and Moses (8 months old) to head out on our trip to Yosemite. We ended up not leaving until 1:30 p.m., but thought, "No problem, it's only supposed to be a 3 1/2 hour trip".

Yeah, unless a car fire closes down the left lanes of the major freeway out of town and delays us by at least 1 1/2 hours. Then we HAD to stop for In and Out. We finally cross into the park at 6:30 p.m. and it's getting dark and I have Google map directions. They suck. I end up getting us lost in a national forest,, as night is falling and the only map we have is from the park service and has no street numbers or distances listed so we drove around in the wilderness for another hour and a half.

"No problem", I think, because we're supposed to have electricity at our camp site. We were staying at the Housekeeping Camp which has 3 sided cabins with a tarp on the 4th side and electricity including lights and an outlet (for a space heater in our case).

This is so great, except just as we arrive, the power goes out in the whole valley. Oh, and Sommers, the 4 year old, is recovering from a cold and has reactive airway disease and has been puking since they crossed into the park because he's congested and the cold really probably won't be so great for him. Oh, and we have an 8 month old. Oh, and Simon who is heart failure. And it's supposed to be 38 degrees. And we have no light, no lanterns, no power and we haven't eaten and it's 8 o'clock at night. Oh, and Joan and Dre's cabin is occupied by someone else and the front desk says they're on their own to figure it out.

After a brief conference in the parking lot, we decide we'll just see if the Awahnee Hotel has a room. Sure it's $400 a night, but we can sneak in 7 adults and 3 kids into one room and it will be affordable. Great plan, except there are 2 weddings there that night and they're booked. So, it appears that we will either have to drive all the way back home (at least a 5 hour trip) or make due. So we make due.

Joan assesses that one of the cabins next to us is empty, so Joan marches to the office and tells them that they'll be staying there and if the management has a problem with that, they know where to stick it. Skeeter butters up the neighbors on the other side of us and soon we have a propane stove, 2 propane lanterns and the use of their fire pit that already had a fire (they were actually going to stay overnight in a hotel b/c the wife was sick). Laura draws Simon's meds by carlight and gets him warmed up with four layers of sleepwear.

We got the kids settled and Skeeter and Saun-Toy made a yummy dinner and we sat around the campfire making S'mores and relaxing. The adults finally went to bed at about 11. The babies were a bit noisy all night but everyone seemed warm enough. At 4 a.m. the power came back on (we evidently left the light switch "on") and we turned the space heater on.

The next morning I walked out of our cabin to find that we were RIGHT on the river, in a most gorgeous spot. Click here to see pics of our trip:

We didn't really make it on any big walks, but definitely enjoyed the scenery. Joan, Dre, Kim and Sommers decided to leave on Saturday afternoon because Sommers still wasn't feeling well. The rest of us hung out that night eating chili, cornbread and brownies and tried to go to sleep at a reasonable hour. Good intentions, but the babies kept waking each other up all night and I think we maybe slept from 6-7:30 a.m. Still, it was so gorgeous when we woke up, I hardly cared.

We had to pack up camp in a hurry and hustle over to the Awahnee Hotel for a spectacular buffet brunch. Simon was PISSED about it, unfortunately. He was very tired and not happy with all the hubbub in the room, so Laura and I took turns walking him around while he screeched and hollered. We were very popular with the wealthy older couples dropping kajillions to stay there, let me tell you...

After a delicious brunch (highlights included amazing Eggs Benedict and a mango custard) we split up so Skeeter, Saun-Toy and Moses could go on a walk and we headed home with a sleeping baby.

It was a little challenging, a lot fun and definitely something to try again in the spring. Who knew we could go camping with a baby in heart failure?!?