Friday, December 30, 2011

Sweet Rowan's birthday

Happy 1st Birthday, Rowan!
My, what a year it's been

 Last night I was thinking about what Steve and I were doing a year ago this time... I was remembering that I had an ultrasound on the 29th of December and that you were breech.  We got a call from the Doctor that night around 6 PM and he said you'd be delivered via C-section the next morning at 5:30.
We were in shock! We weren't really expecting you to be there so soon- but we were so excited to meet you.
Lily went to stay with friends and Steve and I tried to prepare for your delivery and arrival home as much as possible.
That night, I went into labor with you around 3 AM- And my contractions were so fast. I remember I tried to make a pot of coffee (even though I was directed not to drink or eat), but I couldn't even manage that. I told Steve that we really needed to hurry.
We got to the hospital and I was in such pain. I barely remember them getting me ready for surgery. I felt like I'd deliver you before they were able to operate.
They took me into surgery and you were born by 4:30 AM.

And it's been a wild ride since then, too, Rowan.  What a great year it's been having you with us. You're such a sweet and kind little boy.... I can't even think of the right words to describe you- but 'gentle' comes to mind.

The bottom line is that we're blessed. We're lucky beyond description that you're with us, and I can't wait for the years to come with you in our lives.

We hope you have such a wonderful day today, dear. And we really, really hope the next year blesses you with comfort, and growth, and with a life beyond our imagination.

Love, Mommy.

Tuesday, December 27, 2011

i carry your heart

i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)
i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart (i carry it in my heart)

Wednesday, December 21, 2011

Cuss words and crazy-eyes

Dear Lily-
I don't want you to think we've forgotten about you! How could we possibly?
You, my dear, are something else lately... You're such a lovely mix of sweet, sassy, smart, angry, kind, independent, and cute.

A couple stories:
The other day I was kneeling down doing something and you looked at me, grabbed my cheeks in your hands and said, 'mommy, do you have brown eyes?' and I said, 'Yes.' You said, 'they're crazy eyes! You're so gorgeous.'
I wasn't sure whether to be flattered or not! It was funny.

Your daddy put you in time-out a few evenings back because you were hitting. You got so angry and screamed, 'I want out of time-out RIGHT NOW, daddy!'. He asked you if you were ready to apologize and you said, 'NO! Goddammit, Goddammit, Goddammit, GodDAMMit!'
We hid our laughter and waited for you to cool off a bit. But I sure did relate to you, Lily!

I've also wanted to tell you a few things that have been on my mind, Lily. I want you to listen carefully.
  • I'll love you forever and ever- to the moon and back and past the stars.
  • I hope to be such a constant in your life- someone you can trust to be steady and understanding and who tries to remember that you're a little person. You're your own.
  • I never want you to feel burdened or put-off by our family's situation. It's something that will make us all better people... and I hope so hard you don't look back when you're older and feel you got less than you should have of anything.
  • It's time to start using the big-girl-potty.
  • Your temper is impressive! I hope this fiery side of you serves you in your life.
  • I'll always be by your side. No matter what. No matter where.
 Love, Mommy.

Sunday, December 18, 2011

Remember everything you learned?? Now switch that...

Well, we've been home for a few days now, and I guess we're getting back in the swing of things.  People have been asking how the trip to Mayo was- and why we went.
Before we left, I guess I didn't have an answer- mainly because I didn't really know why we were going.  I knew we were having some appointments and were consulting with a seizure specialist there- but beyond that, I wasn't certain.  I guess I'll just tell the story of our trip....

My friend, Lynnette, graciously volunteered to travel with Rowan and I to Rochester.  Having her there was a blessing to say the least.  I planned to go by myself with Rowan if she couldn't make it, which would have been an enormous mistake and would have certainly caused more meltdowns than I had.
We left on Sunday around 1:00 PM and dawdled our way there.  We found our hotel easily and unloaded everything from the car- 5 trips!! How in the heck would I have done that with just me and Rowan?

On Monday morning, we met with Dr. Broomhill and Dr.Wong (both females!).  They are neurologists and work with children having intractable seizures among other seizure issues.

They asked bunches of questions, examined him, reviewed his MRI images from Sanford and his EEG results. Then they set us up with the dietician and scheduled us to check in at the hospital for a longer EEG study.
The next morning, we met with the dietician, who was wonderful. She eased my mind quite a bit when explaining Rowan's new diet and made me feel infinitely more knowledgeable. I'm sure you all know Row's been on a Ketogenic Diet- but she and the doctors wanted to tweak it and to make sure his ratios were correct.
They switched him from RCF formula to Ketocal. They also showed me how to make meals for him; three 100 calorie meals per day.  All meals including formula need to be weighed and measured on a gram scale to be as precise as possible and to keep Rowan in Ketosis.  His ketones need to be checked 2x daily now to make sure he's producing enough to help with seizure control.
After meeting with the dietician, Lynnette drove us over to the hospital so we could check in.
Right away, they got Rowan hooked up to an EEG cap he'd wear for about 30 hours. It wasn't too comfortable for him, but he sure was a happy baby during the study...

Gratefully, he didn't have any seizures during the EEG that were of much concern. His brain activity is not normal- and seizure control will always be an issue, but right now they are as controlled as possible with the help of medications.
Speaking of medications... They switched almost all of his medicines to pill form. They called to our pharmacy to discuss prescriptions and made sure of the carb content in everything that he ingests. They're sure thorough! But medication switches plus diet reorganizations mean lots of work for mom and dad.

During our stay, Dr. Lindley, his neurologist in Fargo called to say that the results from the genetic testing came back positive for DCX X Linked Lissencephaly.
It's hard for me to express what that news means... We already basically knew this is they type Rowan had- but I don't think I really wanted to know.  It's good, though. It's good to know facts.  Information is power, they say.

The genetic results help everyone involved to know exactly what type of Lissencephaly they're managing- and it gives us as a family information necessary to take care of ourselves and of our children.

How IT happened, I'm not sure. I'm trying to be pretty matter of fact about the genetic results- but the truth is that my heart aches over how he got this condition. Ok, I'm done being emotional...

 Here is our room... Not bad at all. It was pretty big and ended up being right across the street from our hotel! Both mornings, Lynnette was kind enough to walk me over a huge mug of super strong coffee.... I can still taste it. It was definitely a bright spot in the mornings.

They ended up keeping us in the hospital for a second day to make sure he was tolerating his new diet and medications. It was a good thing- but we were sure excited to leave on Wednesday...

 We put some toys and things in Rowan's crib to help stimulate him and to pass the time.

So... Moral of the story??

We got more information- I think more specific and detailed information. We had to re-learn the medications and doses again along with the meal plan. But now our dear boy gets to eat foods and that is the best news I could have heard in Rochester.  He just loves his butter-filled meals.
We go back in February to meet Dr. Wong and Dr. Broomhill for a check to see how all of the changes are going- and then again every three months.

We were ready to be home- Lynnette and I were tired- and I missed my Lilygirl like crazy.

But I think Rowan was the happiest to get home....
We love you all and are thankful we've got such amazing people in our lives.

Monday, December 12, 2011

Mayo with a side of chocolate

It's Monday night- Lynnette, Rowan, and I headed out yesterday with a Murano packed to the brim full of everything from shoes to celery to coffee to diapers to chocolate (I should also mention three (3!!) laptops, one iPad, one wireless WiFi device, and two cell phones) and drove in the direction of Rochester.
Rowan was referred to the prestigious Mayo Clinic for further testing and consultations with Dr. Wong, a seizure specialist, and a nutritionist.
This morning, Rowan and I went over to the clinic for an EEG at 7:30- he did a great job and was a model patient...  Later today, Nancy came from Minneapolis to visit and Rowan had a couple more appointments.
Tomorrow morning-bright and early- Rowan has a meeting with a dietitian to discuss his Ketogenic diet promptly followed by an admission to St. Mary's Hospital for a full day and night in the monitoring unit.

Here's the deal... I really don't want to write too much now, because I've got pictures and video from our special trip and I want to show y'all... so more to come- We love you...

Saturday, December 3, 2011

Birthday wishes

Age 36 has come, and although I wasn't aware I had wishes, they seem to have come true. I got some time with my children, some much-needed time with Steve, and some time to clean and organize (weird, I know).
But wishes are funny things, aren't they? Sometimes I can't help but wish and other times I feel so silly doing so. Today Steve and I were driving listening to a story on NPR about a woman who'd been in an accident. She described all the therapies she'll need to endure - or get to endure- through the coming months and years and I said, 'I wish Rowan had that opportunity'. Isn't that funny, though. Wishing he had the opportunity to learn to walk, or to learn to do things. Maybe funny isn't the right word.
I guess what I'm trying to say is; life changes and your wishes adjust.  But this is true with everyone. No one has a perfect life without shifts and changes- happy times and sad times.  Everyone experiences pain. We're not immune from that- no one is.
I'm not scared. But adjustments take time- and orienting my brain and my heart to the changes that have occurred and preparing for the future sneaks up on me. Little by little we adjust. I suspect that's how everyone does it. 
Here is where my heart is, though... always.