Thursday, October 14, 2010

You just put your lips together and blow...

It's easy, isn't it?
Yes.
But for Reuben, no.
Today was the first time he has ever done it.
Why?



Because with the trachestomy, he had no means to blow out through his mouth or nose and with facial palsy on his right side, there are a few things which don't come to naturally to him.
I've been blowing on his face since he was born, because it makes him smile, it tickles him, it brings him back if he's deep in concentration. 
And today, when I blew onto his face, he blew back.
And I was taken back.
And I smiled and laughed.
And it's the first time he's ever just put his lips together and blown...

He did a lot of other things today with me and they all went something like this:

At 9am he came to his old school at UCLA, now Callum's school and signed during Circle Time, nudging Callum to go up and collect his name card when Reuben heard it.

At 11am he came with Mama to UCLA hospital for the Cranial Facial Clinic and we talked about his medical history before a day of appointments dedicated to his Ears, Head and Neck.

At 12pm he had lunch with Mama in the lovely, airy, modernist restaurant of the new hospital, hugged many strangers, was recognized by nurses and Drs whom I didn't even recognize, "Hello Reuben!"

At 1pm he met the geneticist to discuss CHARGE syndrome but I'm far ahead of anything she could offer, other than to offer say how I'd like to be contacted when new families have a diagnosis. This is nothing new; we all pay it forward. Yuka and Scott would visit us on their date night every week at Children's Hospital and I hope I've helped many other families through blogging since birth and visits in other small ways.

At 130pm he met the orthopedic dentist and she confirmed he has all his teeth and they're looking just fine, along with this gums. Without eating orally, ironically the teeth and gums can be badly affected.

At 2pm he met with the Gastric Intestinal Dr to discuss his reflux and how he no longer needs that stomach surgery and that we'll try to ween him off one of his meds, Reglin. 

At 230pm he met with an Audiologist to discuss his hearing issues and he showed her how beautifully he could speak just a 5 months after getting his trach out.

At 3pm he met a large group of male Drs all crowded into our tiny room as I ran along the corridor to get rid of the dirty diaper and returned to see he was happily entertaining them. And here we discussed science fiction:
- That he has about a 5/7 severity of facial palsy
- Facial Reanimation surgery - transplanting a nerve and a muscle from his leg into his face through 2 surgeries so he can have a full smile, speak more clearly, perhaps eat with his mouth, continue to be sociable 
- Botox as an alternative to the above surgery but which would be done every month under anesthesia (not an attractive prospect). I think though we could at least try this by combining the anaesthesia whilst under for the trans-esophageal heart doplar study to get a better look at his bicuspid valve and subaortic membrane in his heart
- Ear surgery to correct his pixie like ears, the first sweet thing I noticed after birth
- Ear surgery to insert new ear tubes to drain the fluid that's back again
- A more immediate surgery for his Torticollis, his head tilt to the right which was described as "severe", snipping a tight muscle so his head will sit straight and needing 4-6 weeks with a neck brace afterwards so he can relearn behavior and understanding how his eyes have had to readjust to see things straight ahead rather than the lopsided way he naturally does. This is one thing that other kids DO notice about him, but it's soon followed by Reuben teaching them to sign.
Gee whizz. These are tough questions: elective surgeries rather than the 16 essential ones he's had?

At 4pm when we were both tired, he went for a hearing test in a sound booth and the for the next two hours we tested his responses to conditioning exercises and I had the audiologists instead asking him to tell him the sign for something instead of having him moving his head when the pink elephant lit up (boring Mama!)

At 9am, 10, 11, 12, 1, 2, 3, 4, 5 & 6pm, Reuben signed his alphabet using both hands in symmetry which he sometimes does to be funny (ASL alphabet is one handed) whilst speaking the alphabet sounds or names, whilst smiling, whilst being impeccably, unbelievably patient, 7hrs almost entirely in the same room, making people laugh, reading letters and little words, blowing on my face, loving being tickled. And I was once again aware of how utterly in awe of this little man I am, how beyond proud I am of how he's growing and developing, in his own right irrespective of his history, how he's the bravest person I shall ever know and above all, how happy he is.

At 7pm we got home after the long drive, and he had a bath, all stinky and sweaty from the hospital and we watched Toy Story til he fell asleep along with Callum and I drank a glass of red wine and dreamt of sleep.

And I blow on his face in the bath, grab my camera for one lazy shot and he just puts his lips together and blows.

7 comments:

Tanya said...

Still dreaming of the day when my son can blow on my face :) It's all those small silly things that I catch myself missing.
As long as today was, with Dr. after Dr., there is something to be said for getting it all done in one day. I feel like we go back and forth for this appointment, and that appointment wishing that they'd value our time a little more.
High five to Reuben for being so patient and I'm going to practice the abc's with both hands too - haven't done that yet!!

Justin and Victoria Nelson said...

I know how much you guys helped us in the beginning...
I remember the first time I set eyes on Reuben, how much hope and inspiration he gave us for Moriah.
We love the updates.
xo,
Victoria

ellen charge said...

catherine i would say dont go the ear surgeyr you can ask crys on fb bout evas reconstruction i actualy dont think it worked if u look at pics it still looks and crys has said its hasgone back to its old ways but yes do the tubs

Crystal M. said...

that is an amazing skill!! Also sounds like you all are super busy!!
Keep it up Reuben!!
Love,
Crystal and Eva

ypersico said...

oh my ~ I love your blog (and your blipfoto) ~ and I love how you cherish life and hold all your moments in so much love ~ <3 How amazing to find Scotty and myself mentioned in today's precious post with so much kindness. The honor was all ours. Those were precious times and we were incredibly grateful to have been any part of it. To be able to do anything for you was in a way reaching back to ourselves a little too <3 <3 <3 Your family is beautiful ~ much love

Lisa W. said...

We did some talking to plastics about this exact same surgery for Kennedy but it just seemed like such a long, complicated surgery and we weren't willing to risk anaesthetic for it at this point, especially given the abnormalities commonly found with regard to nerves in kids with CHARGE (many are found with CI surgeries). If it's something she wants to pursue in the future, we will support her and do what we can for her but it wasn't worth the risk for us right now after hearing all about it from the plastic surgeon.

I am sure whatever you decide will be the right one for Reu and you all. xoxo

Blake said...

What an awesome day!! Never thought how much I would miss all the appointments and decisions to make....