Thursday, November 02, 2006

Little Pumpkin

I am happy to report that Thomas is still doing really, really well. He's learning to walk while pushing stuff (chairs, bins, his little car-pusher-toy) and continues to work on his secret language of Va Mip and Maaaaa.

We had a series of tests and procedures done last week in a couple long days at the hospital. First of all, his MRI looked unsurprising, a word we love around here. Apparently the radiation we just completed makes it hard to tell what's going on in his little head on the scan, but nothing was outstandingly strange.

MRIs will always be hold-your-breath events for us. We'll be getting one every six to eight weeks for a while, and then every three months, and we'll never get over the dread. But it was good to hear our oncologist say, "If I had imagined a best-case scenario for Thomas after radiation, this is how he would look."

The next procedure was that he got his G-tube changed to a G-button. It's hilarious to me - it's this part that lies against his belly and looks exactly like the piece you blow in to when you're blowing up a beach ball. What's great is, when he's not being fed - which is several hours of the day now - he doesn't have a tube hanging out of his belly to step or sit on. I keep telling him that the more lines he loses, the closer he gets to being a real boy.

The last test we had was his swallow study. Thomas's tumor stretched the nerves that control swallowing and breathing and that affect his vocal chords -- that's why he needed the tracheostomy. As you know, however, he's been making a lot more noise lately. We're pretty confident that his breathing is recovered, too - Scott was holding him while we were watching TV one night, and we realized that Thomas had been sleeping with his finger in the trach for over an hour. ! He was sleeping just fine, breathing through his nose. Scary, but an encouraging find.

To find out if he could swallow, we had to get him to eat some foods of different weights. As Scott was scooping barium-laced ice cream into our crying baby's mouth, the specialist and I watched the video x-ray. Thomas's tongue move the food to the back of his mouth, down his throat, and into his esophogus. YAY! This good news means that, with some intensive speech therapy, Thomas will begin to eat through his mouth pretty soon. We've already got him working on a sippy cup a little bit, although he's still creeped out by anything sticky, wet, or crumbly - so solids may be a while coming.

As you can imagine, we were thrilled and relieved. After brain cancer, issues like the trach or a feeding tube are just not a big deal in some ways. It seems too much to ask for him to survive and not have significant limitations. He has lost some hearing in the ear the tumor was attacking, and getting past the food aversion and trach will be a long process, but - still, . . . good day.

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At 8:49 AM, Anonymous Anonymous said...


aunt rhonda loves you all

At 11:10 AM, Blogger The Monkey Attack Victim said...

Glad to hear there is a positive report!

At 5:34 PM, Anonymous Anonymous said...

Great news!! We will keep praying for baby steps!! Hope to see ya soon if I can stell well for any length of time.

Love you all!!

Nana and Grandpa.

At 9:57 AM, Anonymous Aunt Kaitlin said...

I'll be over for yoga with lil' T next week. ;)

love aunt kaitlin

At 2:54 PM, Anonymous Anonymous said...

Congratulations! Love the MRI results and your little punkin sleeping with his finger over his trache. God is good, isn't he?

At 5:50 PM, Anonymous Anonymous said...

I check your blog frequently and my thoughts and prayers are always with you. What a miracle you have in Thomas and he has in you as parents. Peace be with you all. Keep those pictures coming! Thomas is such a joy to watch as he grows!

At 12:01 AM, Blogger Ctelblog said...

Hey! Good news. Progress with the swallow and the G tube is good news - as we know only too well. Good luck with getting him to take other foods. After chemo and radiotherapy, little Ctel wouldn't have anything in his mouth, not even water.

At 5:42 AM, Anonymous Anonymous said...

GREAT day...all of that is most excellent...we hope to see you on Sunday!
love, mel.

At 1:09 PM, Anonymous Anonymous said...

thought you might find this useful.

Congratulations on all the great happenings! Yay!


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