love

Dear Rowan,

We celebrated Thanksgiving this last weekend with your cousins, Aunt and Uncle and Grandma and Grandpa. Everyone had a great time. And you had a really nice time, too. You didn't sleep very well, but none of us did, really. We all came down with a cold and I think it took its toll at night.
I was talking with Leah today and was saying that I'd gotten pretty sad in the midst of all the happy this past weekend. I was so proud of you and of all the kids- and was happy to see everyone together and having fun. But I couldn't help but think about you.  I was so sad you weren't able to run around the yard with the other kids. I wasn't trying to feel sorry for you- or us, I want you to know.  Sometimes it's being around other children that can remind me of the things you won't get to do.
And my dear, I sure do know that there will be loads of things you will do. And that you'll learn and grow and will experience as much of life as possible.  I know that. But I'm still sad.
Last night when I was feeding you you put your hand up by my face and I kissed your hand and tickled it with my mouth. Then you did it again, and again... Then you just held it up my my face.  And I know like I know that you are so smart.
So, Rowan. You're such a great kid- and you're taking this all in stride. You're patient with us and with Lily and you have the most beautiful smile.
I love you to the moon and back and past the stars; forever and ever.
Mommy.

On the rooftops shouting

This morning I was lucky enough to listen to Rowan.
I can't even explain how full my heart feels today. He's doing amazingly well and I want to tell anyone who'll listen...

Here he is talking to the Christmas Tree.

Benefit day

I've been thinking for a few days about the benefit that was held on Sunday for Rowan. I've wondered what to say and have wanted to make sure when I wrote I didn't leave out anything, didn't forget to acknowledge people, and that I addressed benefit-day with appreciation.

I sure hope I do that- and those who know me know I like to communicate with pictures.  Unfortunately, I was so busy on Sunday saying hello to family, friends, and thanking people for attending I didn't have my camera with me much.  I wish I'd taken more pictures- and some in color!

Anyway, here is the story about Rowan's benefit:

1. People drove from all over the Upper Midwest to show support and love to us.
2. More businesses and individuals donated items and hard-earned money than I can barely comprehend still today.
3. Friends spent two months preparing, promoting, gathering, and allowing us to take care of our son and daughter.
4. Even more friends gathered on Sunday to serve food, take tickets, set up, tear down, and head up the auction
5. My wonderful Grandma and Grandpa Mayer came- in addition to family on the Matz side, the Hammer side, and the Mayer side (all driving great distances) to see us and to love us.
6. DMF Lend-A-Hand showed support and promoted the event while matching funds.
7. We got to see people from every little niche of our lives; AA, family, work, school, ex-colleagues, nurses, caregivers, strangers... All friends, though. And we sure have loads of friends.
8. Cards have poured in since Rowan's diagnosis.
9. Prayers have come our way from all over the country.
10. Lily thought the party was for her and in the middle said, 'I'm so happy, Mommy- I'm so happy'
11. I forgot to take a picture of Michelle
12. I can't figure out how to write anything at the bottom of this post
13. People are amazingly generous.
14. Their generosity has inspired me to do the same.
15. We are so very lucky. Our life is exactly how it's supposed to be.
16. 'Thank you' will never feel enough to express our appreciation.

My Aunt (one of the people I want to be like when I grow up), Holly

My beautiful cousin, Becca, on her 17th birthday

Amundsons bidding on the guitar and amp they won for their boys

Grandma Joyce and Canyon

Grandma GG and my smart Uncle Karl

Dan and one of my favorite people, Rose

Our lovely friends took time from their weekends to work

More working friends- one I only just met

Olivia with lettuce-and a scarf

Lily had a blast- and was exhausted.

August and everything after

My friend, Jay, was kind enough to fix my broken computer.  Because of my good fortune in friend-selection, I can now upload pictures from my camera to this thing- so you can see what we've been doing since the Summer.
This will most certainly be a mish mosh- just so you know what to expect...

Our Rowan pre-diagnosis

Lily and Daddy carving a pumpkin for Halloween- they had such a great time

 One September Sunday afternoon, Steve and I decided to take Lily for a special trip to an apple orchard in Minnesota.  We really enjoyed our one on one time with her.  She's sure a good girl.

Lily peeking through a thing

Three out of four

Lil got to paint pumpkins

 Grandma Joyce must have taken this picture of Rowan while he slept-

One of Grandma Joyce and Lily's special things is making crepes together.  Lil stirs the eggs, the flour and helps- and Grandma Joyce probably loves it even more.

Halloween:

This year, Lily wanted to be Felix the Cat for Halloween.  Steve and I were likely more eager than she was to go trick-or-treating with her.  I was a tad sad because I thought I'd stay with Rowan while Steve took her out- but Kate and Gene were kind enough to spend time with Rowan while we went out with Lil-everyone was happy.

Me and my Felix

A happy kitty

And on to other things...

Goofy Lily feeding her brother

And Goofy Lily eating worms...

Life is good today- there was a benefit for Rowan yesterday, and I'll write more about that tomorrow. I want to give it the space it deserves... Good night!

Too much Medicine

We took Rowan in to the hospital on Saturday- it's now Tuesday and he may be getting out today.

He was having some really severe seizures, Clonics, and was vomiting so much he couldn't keep any medications down, so he needed an IV as a way to get his medicine.

Last Friday Rowan had an EEG.  The results were read at MEG (Minnesota Epilepsy Group) and showed he has Infantile Spasms.  This type of EEG or seizure is extremely difficult, if not impossible to control.  The doctors decided to start Rowan on Depakote and on a very new medication called Vigabatrin.  The latter is quite a risky drug and Steve had to sign a consent form for them to administer it... can cause vision loss among other things.  Well, all are risky, I guess- the Depakote can cause significant liver damage...

Changes are being made to his Ketogenic diet- lowering Carnatine and adding in some oil.

Long story short- our baby is on loads of medicines.  (Keppra, Phenobarbital, Depakote, Vigabatrin, Carnatine, and CytraK) He's got a Valium suppository for emergencies, as well.

Please pray for Rowan; that he responds well to the medications and that they don't cause the adverse side-effects.

We'd sure appreciate it.

Beautiful boy

It's just over a month now that we learned Rowan was sick. And honestly, I think it's harder to accept now. I have been more emotional- more scared-more heartbroken as time's gone by. Don't get me wrong, I adore my beautiful boy. And that's why my guts hurt.

A couple of weeks ago Rowan developed a small rash on his inner elbow. Steve's been taking him to the neurologist to check it regularly. They're worried it'll turn into Stevens Johnson's Syndrome, so no one wants to take it lightly. it. Last Friday Steve and Rowan were at the doctor again to have levels checked and the rash looked at. Steve called me and said, 'don't freak out'. So immediately, I started freaking out.

The doctor said Rowan would likely have to be admitted to the hospital, either here or at Mayo so he could be monitored for the rash while his meds were reduced or stopped. She is a pediatric neurologist, but she doesn't know everything...

She made some calls to other doctors and decided we wouldn't have to be admitted, which was wonderful!  We'll go there eventually for outpatient appointments, though.

They took Rowan off of Topamax and we're to watch the rash- it's now a week later, but the rash is still there, so we'll see tomorrow what comes of that.

Rowan had a swallow study done today to see if any liquid was going into his lungs.  We have been worried about that.  He's been vomiting from time to time and has a cough pretty regularly.  If he wasn't swallowing well, a feeding tube would be the fix.  It would break my heart to go that route since sucking is one of the things that makes him feel better.  So happy to say that his swallowing is great for now- a little weak, but nothing seems to be going into his lungs.

What a relief that was today.  I sure needed that.

My beautiful boy likes classical music- we listened to it in the car on the way to our appointments.  His eyes were open, focused, and he didn't make a peep.

He's been around a little bit more the past two days.  I wish I could convey what a gift that is. He tried standing a little last night and I was so proud of him.

He is so smart....