Monday, March 23, 2009

Update Continued

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Continued....
Last Wednesday we had a fabulous dinner with one of our midwives, Amrit. It was so wonderful to see her, especially as we come to the one year marker of that incredible night. Jaime and I went over the birth story the night before we met Amrit and then got to rehash it some more over dinner.
I think working with a home birth midwife gives you a relationship for life. It starts the same moment that your relationship with your child starts. When does that ever end? In sharing that moment with Jaime and I, I will love Amrit and Lior in a way that I can't imagine ever leaving me.
It was such a sweet time to reconnect and catch up.

On Thursday Simon was in rare form and several dog walkers visiting the Point Isabel Dog park that day can confirm that. It's our second day working with a new baby carrier. Simon, chunker that he's become, makes long walks with the ergo not so much fun for the sensitive back of Laura M. Fitch. And while the stroller is wonderful, when there's been any sort of rain, walking on the muddy grass with it, el doggo, and bebe is not so much fun.

A while ago, my cousin Leah, gave us an external frame pack carrier that's been around the block (it's carried Sophie, Talia, and even Maya on several occasions). Now it's Simon's turn. So far we've practiced with a walk around the neighborhood, and a longer trip to the Zoo. He seems to enjoy it enough so we're experimenting with a longer dog walk today.

Once at Pt Isabel (the largest off-leash dog park west of the Mississippi), Simon goes in the frame pack, Roxie gets to chase her ball, and we're off. It's a beautiful day. The sun is shining. It's neither too warm or cold and there's delightful wind coming off the Bay.

No less than two minutes into our walk I hear a giggle from behind me. Something is making Shimmy laugh. Another three steps....another laugh. This continues long enough that I have to call Jaime on the phone and just let her hear him. He's just laughing for the joy of it.

And then it starts....he begins to babble. A "bah bah bah" here. A grunt and giggle there. His voice rises and falls with intonations I've never heard put together before. There's even a "fwaa fwaaa" happening.

Loudly.

Not yelling but full voice. And it just continues.

For a solid hour.

Simon is just talking away, calling out to people that we're passing by, bringing on some very interesting stares and smiles.

For an hour.

Really.

Non-stop.
It was incredible. There was something about the wind and sun, being up higher in the backpack, and being out watching the waves and dogs and people that just set him on fire. It was awesome. I couldn't wipe the smile from my face.

Friday brought another kind of experience with our evaluation at the Regional Center of the East Bay to see if we qualified for services. We'd been told several times that it's a comprehensive evaluation and will last two hours and involve a lot of questions for me and a bunch of testing for Simon. Thankfully Dianne was able to come with us and after a large vomit session right as we were getting ready to leave the house, off we went.
Once again, just like his physical therapy evaluation Simon rocked it. And while I was the beaming proud Mommy of the very sick but you wouldn't know it baby, I was also worried that we wouldn't qualify for services that we do in fact need.

Pre Appointment conversation:
Leela our case worker- "So the evaluation will likely last up to 2 hours so don't forget to bring some snacks for Simon."

Pause

Me- "umm, he doesn't eat. That's why we're coming to see you. We're hoping for some OT for eating."

Leela- "what do you mean he doesn't eat?"

Me- "he's on an enteral feeding pump and takes all his nutrition through his G tube."
Leela- "Right, ok then. You should qualify then."

I think this conversation happened with at least one other person before we actually got to our appointment. So going into it I wasn't that worried about qualifying.

Then we arrived and started to talk with Leela and an OT evaluator. Simon rocked his fine motor skills assessment, turned pages, played peeckaboo, was pinching and grabbing and putting just about everything into his mouth. To every question they asked me "does he...?" "has he...yet?" my answer was pretty much yes. This was making me very nervous.
As we finished up I was still waiting for the baby food swallow part of the eval to happen and when it didn't I got even more nervous.

Jaime and I need some help. Simon doesn't eat. He has no interest in feeding himself, never displays signs of hunger, and gags and/or throws up every time we put something into his mouth to swallow. I love food. Jaime loves food. 'food is love' is a saying in our house (no need to psychoanalyze that, there are lots of other types of love too, don't worry).

So as the case manager seems to be wrapping up and collecting her papers I had to ask, "do we qualify?".
She says "of course you do. We can hook you up with a nutrition and eating specialist in the next two weeks and get the paperwork going for respite care as well."

Yeeehaw!

But they don't stop there. Both Leela and the OT person go on for minutes about how special Simon is and how they really don't often get to see babies so compartmentalized in terms of their development. As in, except for the not eating part, Simon is doing exceptionally well. There's another blog entry coming about how that's alternately such a wonderful thing and sometimes makes me feel completely alone in the world. But that's for another naptime blog entry.

(BTW Respite care ='s 10 hours a month which is not much but will be a welcome bit of support for me)

And I think, Simon is so amazing! He is so interested in living his life he has managed to drink it all in, save for what is too much for him. Eating and swallowing are too much for him. But, reading and grasping and moving and dancing and pinching (hard!) and hugging are not and he attacks those things with delicious gusto. What a lesson in loving your life and not being complacent. Not being complacent but also being gentle with yourself.

He'll eat. I know he will. It will just take us some time. Luckily that's what his heart is giving us right now. It is taking it's time to heal and get stronger, but the rest of him is doing such a stellar job at just being a baby... that lets us keep going on, slow and steady, going on. So, I try not to worry too much when he won't go down for his 2nd nap because he's too wired trying to roll over and stand up in his crib. That's his job as a baby. I do my best not to freak out when after 25 minutes of said activity he's panting hard. He may be panting hard but 20 seconds later he's not and that's 'normal'. It's just different that I'm counting the seconds to see when he stops panting. And just for fun I'll add in an extra counting his heart rate during the day. Just for fun.

Who talks like that?

Other than that it's been a lovely time of it. We had a wonderful brunch with G'Pa Bruce on Sunday and there's nothing better than watching Simon pull his G'pa's finger.

Today we got recognized at the Berkeley Bowl from our blog. Simon is like his redheaded Mama in that he loves to be recognized. He was just smiling and basking in the attention. Mommy is learning to appreciate it.

Tomorrow is a cardiology appointment complete with Echo Cardiogram, and blood draw. His BNP should be in on Friday and I'm wicked curious.

That's the general update. See you all at the birthday party right?


Here are some pictures of Simon in an outfit that his Great Uncle Barry sent him. Yup, it's Barry's outfit from when he was 2 years old (sometime in the 1840's- oops I mean 1940's sorry Uncle Barry). Check out those buttons. And yes, it came with that silver spoon. You can't see it but it says "Little Boy Blue" on the spoon.




Caught- Loving His Mama!!

2 comments:

Maia said...

I love these stories. and I love you all. keep em coming.

Sara said...

I am so curious as to how Simon's eating therapy goes - we've got a baby who refuses to eat too, and have an appointment with an OT on Thursday! Silly babies - they will learn to love their food someday.