Thursday, April 10, 2014

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.

Wednesday, December 11, 2013

Dear Lily

Dear Lily,
You've been so lovely to be around lately- just a joy. I wanted to write to you to tell you how much I love you.

We've been professing our love to each other quite a bit lately, actually, and those usually involve food; i.e. 'I love you more than chocolate cake.' and 'I love you more than the ice-cream with sprinkles!' You've also taken to randomly saying, 'I love you, Mommy' and it melts my heart. I think it's so important to let others know they're loved-and I sure hope you feel loved every single moment of every single day.

You've got such a funny sense of humor, too. Lately poop and pee jokes are a hot subject in the house.

I also adore that you're a homebody like I am. Our favorite thing to do on weekends is to stay in our pajamas, make sweets and to 'do whatever we want'. Daddy and Rowan need to get out of the house, but not us!

School is going well for you- your best friend is Violet and she's a ball full of energy. When we pick you up from school you and Violet hug each other and then all of the other kids want hugs. Pretty cool.

You have a sweet little singing voice- You're trying to master vibrato. Haven't quite polished it yet, but you get the drift.  Your tone is great, though, and I love hearing you sing.

Anyway, I just wanted to say hello and to remind you how wonderful you are.


Love, Mommy


Thursday, December 5, 2013

The reality vacation

It's really been a long time since I posted anything- Seems like time just keeps flying by.

It's early December already, and the holidays are upon us. This is always such an overwhelming time for me because I'm not historically a great traveler. I get anxious.

We recently took a trip to Buffalo Gap to Holly and Jeff's ranch for Thanksgiving. It was Grandma and Grandpa Mayer's 67th anniversary, Grandpa Howard's 90th birthday and was such a great reason for us all to get together.
I didn't get a ton of pictures, but we sure did have a great time.



Rowan was really out of sorts this particular weekend and it took a toll on both Steve and me. I'm sure it got old for the family, too- I felt like I didn't get to spend as much time having converstations with people as I'd have liked. And I know Steve was feeling similarly.
We are quickly coming to the realization of the overwhelming nature of special needs. We get a ton of help, that is for sure. But as the months go by and as Rowan gets bigger it is harder and harder to comfort him when he is upset. We also so rarely know what is even bothering him- and he seems to get the most upset on weekends, which gets difficult. 
He likes his routine and doesn't enjoy being cooped up in the house. We're learning that about him. He's starting to express himself; likes and dislikes, which is wonderful. 

I guess what I'm trying to say is that when we are home and in our own little world- the world seems a bit easier... when we travel and are out of our comfort zones, without certain resources, and are overtired- things are exponentially difficult.

Sometimes vacations do not feel vacation'y.

All in all, though, life is good- Lily is a genius... exhibit A:



And the ride home with Grandma Gretchen and Grandpa Doug was pretty pleasant:)



Wednesday, July 24, 2013

No news is good news.

I haven't written in such a long time! Grandma Carole must be getting antsy:)

Our family is really doing well lately- we've been busy this summer trying to get as much outdoor time in as possible.  Here's an update on everyone:

Rowan has been really, really vocal- see his video! He went to the Children's Hospital again this past week and had his VNS turned up two times. Now every five minutes he sounds like a little robot.
I'm not sure if it is helping or not. We've seen much more seizure activity lately, so we will just keep an eye on him.



Lily has been great, too- she is feisty and bossy while being completely lovable and sweet. She keeps us guessing.
Last night she was sleeping in my bed and woke up at 4AM demanding a shower complaining that naps were 'stupid'. Lily 1 Erin 0.
Here she is making a box for Steve on Father's Day.


Steve is in Madrid right now. He flew all night last night and landed safe and sound. He is there for research and to present at a conference and will be gone for 19 days. He was recently awarded a fellowship at NDSU, which is a huge accomplishment.



And this is what I've been up to.



Monday, June 3, 2013

Lily rocks out

Lily had her End of Year program at school last week and I recorded this awesome video for you all to watch! She's a rocker:)

Friday, May 17, 2013

Boys





Just thought this was cute- both passed out. Rowan with a bottle tucked in has arm.

Steve and Rowan will run the Fargo Half Marathon tomorrow... here's hoping for great weather and a good race for them both!

Wednesday, May 15, 2013

Latest trip to Gillette Children's

I haven't really updated this properly since Rowan's last visit to Gillette Children's Hospital in St. Paul.




Here's where we're at with things:
  1. They conducted an EEG that lasted around two and a half hours to get a baseline... They wanted to see where Row is at currently with seizures. Results showed a definite decrease in amps overall from where he previously was (700) down to 200. So that is good. He's having spikes, which show his brain wants to seizure, but they didn't record any active seizure activity. He showed definite loss in brain activity from his Infantile Spasms, and brain activity is assuredly not normal, but all in all, good results.


  2. We are lowering his phenobarbital slowly. Dr. isn't certain it was ever really doing anything, so we're beginning the wean on his morning doses.
  3. Rowan is actively being cared for by their Keto team and is now eating about 4 meals per day, including Greek yogurt meals, cheesecake, more avocado, peanut butter, and bratwursts. I'm happy he gets to experience new and exciting meals.  We've also adjusted his KetoCal mixes down from 67 grams per day to 41 with no added Carbs. Not adding carbs into his formula enables us to add more into his meals.
  4. VNS is still not turned on. 
  5. It appears we will transfer his care to Gillette until Fargo gets a new neuro in July... 



 On another note, and not sure if you've heard, but Lily is growing up.  She tells us this often and stretches her body 'taller' while she lets us know she's a big girl.

Because of her new status, she's gotten a big girl bicycle!  Here she is, but I'll post video soon. She's getting the hang quite nicely!