Tuesday, July 22, 2014


I promise, I'll try to write more regularly- we have so much going on and I must remember to share...

Lily's had the Summer off of school, which she really needed.  She has been a busy girl. She's taken two sessions of Critter Camp at the Zoo and is now a Guppy in swimming lessons! Her baths take longer because she's been practicing putting her face in the water.
She's gotten to spend time with the Grandmas for longer periods of time, too. After a week with Grandma Joyce and her cousins, she was whipped!

She's been spending lots of time with Steve this Summer, too, resulting in her learned a few new phrases along the way thanks to good ol' Dad!

I've been doing a bit of work at the wood studio on a Little Free Library and she came with me one day to help...

Rowan has had a good Summer so far, I guess. He's been happy for the most part and has been attending school during June and July. He's pretty much a stud.

  The problem is that he isn't gaining any weight. He's been visiting Gillette Children's Hospital for almost two years now and has lost weight since his first visit.

When he doesn't have an appetite, he doesn't get enough fluids, food and doesn't get any of his medicines. Then it's a cycle of trying to get him back on track. And sadly, we don't really know what medicines and doses are doing the job for him. He pretty much never gets his night medicines.

They decided he needs a G-tube and we now have an appointment to meet with his surgeon and with his Neurologist on Monday, July 28.

During his last appointment, Steve conferenced me so I could hear what he and Dr. Norberg were discussing and when she said her recommendation is that we fast-track the tube, I was overwhelmed with sadness. I wasn't prepared to hear that on the call, so it did take me some time to process. Once she explained that Rowan would get all of the nutrients and fluids he needs as well as his medicines- and that he'll still be able to enjoy some foods, I felt comforted.

He's been choking on more and more meals lately and it's been taking him longer to swallow, so I really do think it's time. I'll keep you all in the loop on this.

And finally, here is a picture Lily drew of Animal (from Sesame Street) with his friend- I think it's amazing and wanted to share it.

I definitely have more to share... Our Fourth of July was great fun- and Steve is moving to Philly in 8 short days.

Stay tuned.