our sweet little tubie

Our little Rowan had surgery a few weeks back so the doctors could place a G-tube. He hadn't really gained any weight in about two years and was only getting about half of his medicines because he sometimes chooses to not eat. Everyone agreed that it was time.

I struggled with the decision at first. I really felt it was an indication of regression- that this was the start of a downward slide, but I soon realized that the tube was truly what Rowan needed in order for him to have a better life. He'd sometimes get really weak; either not enough water, increased seizures, or not enough food. Occasionally he decides he isn't hungry, so we can't get his medicines in him resulting in increased seizures.

So yeah... it's a good thing.

We got approved to have his surgery at Gillette Children's Hospital in St. Paul, MN- it took a bit of work to convince ND to let us have it there, but because he's on the Ketogenic Diet, we finally got it pushed through.

Skinny Love prepping to go in for surgery

Auntie Tessa was with us the whole time, as usual- and I really did need her there. I was really going through a difficult time personally and she kept me distracted.

On his way

Getting ready for a snooze.

Surgery went well for Rowie. The actual tube placement doesn't take that long. Here's our sweet boy in post-op:

Day after surgery, he did really well! Everyone was pretty surprised by that, actually. Day two, though, was a bit tougher. He started vomiting a lot, but didn't have anything in his stomach. Labs were done and they showed a couple of things that were easily remedied; he was in acidosis and his sodium levels were too high.

After a solid day of vomiting, suctioning and cleaning him over and over, he finally started to feel better.

And now a month post- surgery, he's doing really, really well! He has virtually no noticeable seizure activity and has gained weight.  He seems happier and stronger. This was a really good decision-

 Love you all.

Summertime

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.