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.

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.

 

When the boss is away....

Well folks, the boss has left the building.

Steve and I are borderline giddy with the anticipation of not being berated, glared at or corrected. The tension in the house has subsided due to the removal of the egg shells we've walked upon for so long.

No longer must we live in constant fear of saying the wrong thing- or of not hearing correctly. (In case you're wondering- not hearing correctly is a huge deal. If you accidentally don't hear something the soft-spoken boss says, you're really in for it.)

Threats of physical violence are behind us.

The boss has gone to visit the Grandmas.

Vomit.

Boy vomits twice last night- girl tonight.

I worried last night I'd have to take row to the ER, but after a bm he was great... Lily went with kate tonight and got sick, too- poor kid.

Tonight Rowan is ok. Lily is loved. Steve is in Washington and I miss him. Life is good.

Floppy boy.

I suppose anyone who would look at Rowan would be able to tell he is different.

Tonight, though, as we were talking to each other, I remembered, I guess, that he's still a little baby to me. He does sweet baby things, like suck on his fingers and coo and wave his arms without a ton of control. He's just Rowan to us.

But boy, is he getting bigger... Rowan is three and a half at this point. He's long and is getting so heavy to hold. He likes to be held like you'd hold a baby; either cradling or up on your shoulder, and my back is feeling it. I wonder what the future holds when it comes to carrying him and moving him around.

We recently decided to switch his diet from Ketogenic to normal- and I don't think it is going well. Truthfully, the Ketogenic diet is a pain in the butt. It requires really expensive formula and specialized meals that need to be produced to a T. X carbs, x proteins, and x fats. It is a ton of work. I know I was kind of hoping the diet wasn't doing much for him and that he could just eat regular foods; ground up, of course, like the rest of us. But alas- I think we need to go back.  He is much floppier- I can tell his seizure activity has increased. His tummy hurts from some new foods- and I just don't think he is happy.

The floppiness, though... That's the dead giveaway.

He is off to Gillette Children's Hospital in a couple of weeks for another round of appointments. I hope for some - sheesh. I don't even know what I hope for from the appointment. In some ways he just is who he is- and in other ways I wonder if he should be sitting? or swallowing better? or verbalizing more??

I'm fine with him being this way- but should I be striving for more?

Skinny Love and Sunshine

Whenever I hear the song, Skinny Love, by Bon Iver, I think of sweet Rowan. He's my darling, skinny little love...

He's been doing really well lately. We ordered his orthotics for his feet a while back- then had to have him re-cast, so we've been anxiously waiting for them to come in. He hasn't been able to use a stander for months now, and I can tell his frail legs have become weaker. We were lucky enough to get a new stander for the house, so once we get his shoes situated, he'll be able to stand again.

He recently started a new medicine called Felbamate. It's supposed to help with seizures... along with all the others he's currently on: Keppra, Phenobarbatol, Sabril, and the VNS and Ketogenic Diet. We hope to lower his diet ratios and the Keppra I guess.  The problem now is that a side-effect of the Felbamate is loss of appetite. That is one thing our Rowan doesn't need. He's already so thin, and now he has little interest in eating or drinking.

I spoke with the Children's Hospital today and they'll put him on a medicine designed to increase appetite. I guess I hope this helps, but I'm saddened that we have to add yet another medicine into his routine.

He's been very smart lately, though, and is a budding musician- like his daddy...



What's new with Lily you ask?
The weather has finally gotten nicer, so we were able to dig her bicycle out of the garage.  Take a look at how well she did!!

She was so proud of herself last night. She is, after all, 5 now....

Lily's been sweet as pie lately- most of the time.  When she isn't sweet, she's impressively sassy. Her personality is similar to mine in that she is more of an introvert, she tires if she has to run all over and then needs to be home to 'touch base'. Sadly, her grumpiness is also familiar. I don't want to take full credit, but probably should.

I'll try to update more regularly- Love you all.