Monday, October 20, 2014

update on my girl

I wanted to post a few pictures of a very fashionable girl! As soon as a camera is on her, she gets a goofy smile- similar to her mother, I suppose.

Lil is 5 now and is amazingly smart. Her favorite thing to do is to color. Her favorite food is cake.

She has to wear navy, khaki, white, or light blue to her school, but I try to keep her clothes good and comfey.
Cool striped pants
adorable ruffled pants

Lil got to go to Grandma Gretchen's for the weekend. She made sugar cookies shaped like princess stuff and cooked crepes.  

Lilyism- Last night I noticed she may need to use the bathroom, so I told her to listen to her body and to go into the bathroom. Her reply: 'you're not the boss of my butt'.

That is all.

Wednesday, October 15, 2014

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.