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.

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.

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!

surgery and fears

Rowan has surgery on April 3rd for a Vagal Nerve Stimulator implant. We'll travel to Gillette Children's and he'll stay for four days. Not totally sure how I feel about it...

It's an interesting thing to have to make decisions for a child who cannot make them for himself- or give you an indication of whether it's the right thing; whether it will help. We have to depend upon the direction of his Neurologist and the feedback from other parents of children with Lissencephaly.

Right now Rowan seems to be regressing. He isn't as strong or as verbal as he normally is. This has been going on the past few months. We all suspect it's due to his growth which, of course, affects the success of his medications.  This is no big deal, really, but it reminds me that we're dealing with a brain condition for which there really isn't much help. Sometimes when he's doing so well, it's easy to live in the bubble of growth and change and progress. I find myself thinking he'll shock all of the scientists and researchers with his strength and abilities... then the regression and I'm taken back to what really is.

If I were honest, I'd say that I wonder sometimes if all of the therapies work. I know they work for a while, but does he benefit from them? Does he enjoy them? And then I wonder if some of the therapists are really there to help, or are they just looking for billable hours? You may think this is harsh, but when you're the mother of a child with severe disabilities, you think these things. Sometimes it seems he's overwhelmed with therapies. He gets tired, and when he's so focused on the physical, we lose his verbal skills. He seems quieter and more introverted the weeks he has three or more therapies.

Don't think that I would ever deny him anything helpful- in fact, there isn't much I wouldn't give this kid.... But there has to be a balance. I want give him the things he enjoys- the things that will make him feel better, happier, more comfortable. Fact is, he will not walk. I question whether he will even sit. That said, I do want him to be happy and to enjoy stretching and those things that will help his body to feel better. I'm sure I'm making no sense, but it's helped me to write down.  I don't want to push him for my benefit. I always want to do what is best for him.


Row is getting big. He wants to be held like a baby, and I love doing that for him- my back and neck are paying the price. I wonder how much longer I can hold him in ways that comfort him. I am sure we'll all adapt to his growth, him included.

It may seem like I'm down- and I think I am. I'm worried about him, about the upcoming surgery, about the unknown. I understand how to navigate what we've been through, but have no idea what will happen in the next year.

I belong to a Lissencephaly group, and I see parents lose their kids after desperate battles... unexpected ones. I'm scared for that. I wonder when the day will come we'll have to fight that battle...

So- yeah. I'm sorry if you were expecting a more positive post. I've just been scared lately.

Bean-bag Babies

For some reason this phrase keeps popping into my head. 

I have a book on my shelf in queue to read that tells of a woman's lifelong mission to help 'bean-bag babies' to do things never expected of them. If you haven't yet figured out what bean-bag babies are; they're babies destined to spend their little lives propped up in a bean-bag chair, or in blankets, or on a lap. Bean-bag babies are not expected to do much. It's often thought that they can only sense comfort, pain, and the very basics of existence.  They will not walk. Will not talk. Will not feed themselves. Will need to be diapered for the duration of their lives.

I think I keep thinking about this because I have a bean-bag baby. 

Our Neurologist called on Friday of last week as I was leaving work and told me that my genetic testing came back positive, which means I'm a carrier for the mutation that caused Rowan's condition. That was a surprisingly difficult thing to write.

We all knew I was a carrier- and after three tests it was confirmed. Anyway, while I was on the phone with Dr., I was explaining to her the new milestones Rowan's achieved or is working toward. 

1. He can roll both ways
2. He has been babbling with consonants
3. He has been working SO hard at sitting and propping himself up
4. He gives kisses- and will do so when prompted
5. He holds his head so well
6. He reaches out for toys
7. He can hold things for many seconds
8. He can prop himself up on his forearms
9. He seems to understand cause and effect as it relates to hitting an object and it making noise

When I really take a look at this list- not from my home where I'm so damn proud of my kid- but from a sterile environment, these reflect the milestones of a 3-8 month old baby. Rowan will be 2 in 13 days.  He's developing at around 25%.

And you wanna know what? Our neurologist is amazed. She is shocked at these achievements and told me that this is more than she's ever seen any male with DCX-X linked Lissencephaly accomplish.

So sad- and so good at the same time.  So, our dear boy is a bean-bag baby, but we're damned determined he will not spend his life in one.

A peaceful weekend

We had such a nice weekend with the kids- both were, for the most part, delightful to be around.

We've declared Saturday to be 'Sweets Day' and Sunday to be 'Fun Day' at home. The sweets-baking isn't helping my waistline, but it is sure a fun thing to do with Lily.  I think we've all tried to focus more on having a good time together than on trying to cram as much cleaning and tasking as possible into one weekend.  Everyone is happier... and a little bit of dirt matters so little in the grand scheme of things.

Quote of the weekend from Lily: "When I pee will I see teeny marshmallows and chocolate pee?" said after drinking a cup of hot cocoa.  Don't worry, all- I cleared up her confusion:)

Rowan had a strong weekend. He was very vocal and practiced looking at lots of different things.  As I mentioned before, I'm super focused on helping his vision to improve. I've been reading the book, Little Bear Sees and have recently ordered items from Amazon; strings of yellow and pink lights, red mylar wrapping paper, a two-sided mirror.  I want to make sure everything he does is stimulating his vision and that we're focusing on bettering one of the abilities he DOES have. He may not walk. He may never say a word.  But he can see...

On that note, we're moving forward on having a Vagal Nerve Stimulator implanted in Rowan.  I received a form to sign and to fax back to get the actual device ordered.
These forms always take my breath away. No matter how many I receive. Ones like this remind me that, although Rowan is strong and had a good, fun weekend... He's still got a bad brain. He's still fragile and we do have a long road ahead.  I think both Steve and I are so good lately at loving our children deeply and in the moment- and at celebrating inchstones with Rowan, and I can only speak for myself, but sometimes I get so used to Rowan just being 'Rowan', I forget how serious things are. I am sure that sounds silly-because trust me, I remember he is sick.  The day-to-day and the fact that I HAVE to be accustomed to his condition, though, makes me forget things like this: 

Dear Rowan

Sweet Rowan,

I've been lucky to spend some good, quality time with you the past couple of weeks. Last weekend your Daddy took Lily to see River and Canyon and you stayed home with me. You helped me pick up a mattress for your sister's new bed, helped me put the bed together, and snuggled with me a lot.

I've also gotten to sleep with you a few times. At night when your dad is out in the living room, I bring you into my bed so we can snuggle. You're the best snuggler there is, my dear.

I've been thinking a lot about losing you lately. I've tried to remind myself to cherish the times when we are next to each other in bed- or when you fall asleep and I rock you instead of putting you down so I can do other things.  The past couple of times we were lying in bed together, I held you so close to me. I wanted you to feel all the joy you were bringing to me. 
I've found myself wanting to stay at home. I guess I want to soak up all my moments with you... just in case.  I know I need to be in the moment- and I try and succeed most days. Other days I feel your skin and your life. I listen to your voice and watch you suck on your hands. I smell you and I try to make you smile. You're so deeply loved...

You've gotten so strong the past couple of weeks, Rowan! We are so proud of you. You've gotten more vocal- and you're holding your head up like a champ. Your smile and your goofyness melts our hearts.

Today I just wanted you to know that you are a gift. You are a wonderful blessing to our family and we love you so very deeply.

Love, Mommy.

How we found out.

I've been meaning to write for months to answer a question we so often get asked; How did we find out Rowan was sick- when did we find out- were there any signs?

When I look back on this blog and on post from before and after, it looks as if one day things were great and the next day Rowan was in the hospital.  I guess that is partly what happened, but when I think back, there is much more to his story.

My pregnancy with Rowan went well. I worked up until the day prior to delivery and had no complications. I do remember a few times saying to my friend, though, that something just didn’t seem right. I felt something was wrong with the baby. I really just wrote that off as the worries expectant mothers can get, though, and didn’t think much of it. Perhaps this was my intuition- perhaps not. 

On December 29^th, I went in for a final exam to see whether I was dilated yet. (I was due to have him on January 3^rd.) During that appointment, the doctor found out he was breech and they scheduled a C-section for the next morning at 5:20AM.  What a whirlwind that was. Steve and I were in a bit of shock, but were beyond excited to meet our son.

Lily went to stay with good friends of ours that evening and Steve and I got things gathered- with much anticipation- to come home in a couple of days  with two wonderful children.

At around 3 in the morning, I went into labor. I had remembered from a conversation with a nurse the evening before that I was not to eat or drink anything prior to surgery, but I really felt like I needed some coffee, so I began to brew a pot. (this was about 4 minutes after my first (hard) contraction- I enjoy my coffee… Rowan had different plans, though, and my contractions came so fast I abandoned my illegal coffee project and Steve drove us through an ice storm to Sanford. I’m not too sure when we arrived there, but Rowan was born around 4:20- so it was fast. 

He was born healthy, happy, and with the biggest cheeks I’ve ever seen. All of his tests came back great- but I do recall his head circumference being on the small side. No one seemed concerned, and I only recall that fact in retrospect. 

The next months went as you’d expect for any family with a 2-year-old, a newborn, and a partner working toward his PhD. It was busy and we were sleep-deprived.

Lily was jealous of the attention her new brother was getting, but we made sure to give her the time she needed. And if you know her at all, she made sure she wasn’t forgotten about.

Rowan didn’t seem to do as much as Lily did when she was a baby, though. He enjoyed just laying on his back and loved to suck on his hands. I remember Steve and I having several talks about us needing to stimulate him more, read to him more, and help him to hit his milestones. I really thought we were not paying enough attention to him because our focus got pulled away so much with raising our daughter. Rowan was consistently content, though. He didn’t demand attention- so I assumed his physical weakness and his lack of interest in grabbing for toys or books was due to parental ineptitude.

People would say, though, that he was ‘just a lazy boy’ or ‘he’ll get there when he gets there’, so I told myself that we were being silly.

Rowan started up at the NDSU wellness center after the summer when school began again for Steve. A couple of weeks in to the semester, I received a call from Connie, who asked me if there were any excercizes they could do with Rowan to help strengthen his muscles.  He was now about 7 or 8 months old and could not sit up by himself. He also lacked strength on his tummy. How nice of her to call- so thoughtful. I listened to her and immediately called his doctor to get him seen explaining that he was weak and didn’t seem to be hitting milestones. He had an upcoming appointment, so she suggested just waiting the few weeks until that appoint and seeing where he was at at that time. In the next few weeks his strength did improve. The staff at NDSU worked with him. We did at home, too, and I worried less.

One week in September of 2011, he caught a bug. He was pretty groggy and was sleeping quite a bit. During the weekend of September 17^th, I thought I saw Rowan have a small partial seizure. I have had partial seizures for years, and it seemed he was exhibiting signs.  I saw him look to his left and just gaze off- almost disappear for a short while. I’d seen him do this in the past and had pointed out to family that perhaps he had a similar seizure disorder. Mine have never bothered me too much- they don’t hurt and I just feel sleepy with no desire to move or talk for a couple of minutes… anyway, again, we just thought Rowan was tired or perhaps still battling his cold. 

On Sunday, the 18^th of September, I was feeding him in his high chair- he used to eat so much! But during this feeding he wouldn’t make eye contact and seemed gone. I googled ‘autism’ wondering if perhaps he had that. Then on Sunday night I noticed what I was certain was a seizure and told Steve I was taking him in in the morning to the doctor.

Sometimes I wonder why I didn’t take him in that moment- It woudn’t have mattered with regard to a diagnosis, but I feel guilt for that. I suspect it’s because I’m less touchy about seizures due to my having them.  Anyway, I phoned my boss that night saying I was taking Rowan in to the clinic the next morning and waited for morning to come. 

When we woke up I called and set up an appointment for 11:30 at Sanford Children’s- but by 8:15 I knew something was really wrong with our boy. He was just gone. He was listless and was gazing away for minutes on end. He was like a little puddle and I drove him right in asking to be seen as soon as possible.

They got us in front of a doctor right away- during the appointment, while Rowan sat like a ragdoll in my arms, she asked me whether he had a pincer grasp-no, whether he could hold on to toys-no. whether he could sit up-no. stand-no. And like a bolt of lightning, it hit me that our son couldn’t do any of these things at 

9 months old and we should have known…

Rowan at the walk in before going to the Hospital 9-19-11

Rowan admitted and having long clusters of seizures- 9-19-11

While talking, he had several seizures and the doctor called the ambulance over to take us to the hospital. We strapped Rowan’s carseat to the gurney in the ambulance and the nurses put emla cream on his veins to prep them for Ivs. I rode along and let Steve know that we were being admitted. He met us at the hospital.

On Sanford’s 4^th floor, they gave Rowan some siezure medications and set him up for an MRI that afternoon. He had to be sedated, and I remember hoping and hoping that they wouldn’t find anything or that they’d just find a tumor or something in his brain that could be fixed.  I was told we’d likely get the results that evening, but it wasn’t until the next day around noon that the doctor came in to tell us the findings. I knew by then that something was wrong. I knew when it took so long to get the results.

The doctor came in and read the MRI findings- which made very little sense, but clearly indicated his brain was not developed properly.  After his first sentence I started crying and crying and Steve held my hand. I think he was in shock- and my heart was breaking.

We had no idea what those results meant in real-world terms. The paper said ‘there is a significant decrease in sulcation in the frontal lobe with less in the parietal lobe’. So I googled ‘decreased sulcation in frontal lobe’. I googled and googled and cried and paced and we just had no idea what the results actually meant.

We had overlooked the very last sentence of the results, though. It said ‘this is consistent with Lissencephaly’. We called the doctor back in to ask if this was what he had, and the doctor said ‘yes.’ I’m not sure what we asked next, but I remember him saying ‘this is bad’. And I appreciated that. I just needed to know.

Then we googled ‘Lissencephaly’. 

We searched and searched for something good- for some sort of positive outcome or hope, but could find none.

We found out through genetic testing that the type of Lissencephaly Rowan has is called DCX-X Linked, which means it was inherited through my X chromosome. Any children I have will have a 50% chance of having this condition.

Steve and I have cried more tears than we could imagine, we’ve been depressed, we’ve faught, we’ve needed to process in our own ways, we’ve gone to therapy, and we’ve come together again…

Since Rowan’s diagnosis, he’s been in and out of PICU many times, in and out of Sanford’s 4^th floor many times, at Mayo many times, and in the ER.

Rowan’s had countless EEGs, which initally showed him having 3 seizures every 10 seconds. He is actually constantly having seizures, but his medications help with the larger ones. Right now he doesn’t have any visible seizures at all, and small eye-twitches are the only way to tell that they’re still going on under the radar, so to speak.

Our son gets therapy weekly and is on a special KetogenicDiet which is supposed to help reduce seizures in patients with intractible epilepsy. He is on 11 different medications including phenobarbetol, clonazepam, keppra, and others like Carnitor, Taurine, and vitamins.

Rowan has CVI, and cannot see very well most of the time. We’re learning how to work with that.

But you know what? He is the happiest, sweetest, lovliest little boy you’d ever meet. He has good days and bad, but most often he’s a joyful, gentle little soul with a lot to say! He babbles and has been using some consonants lately. He loves his little sister like mad- and she’s so patient with him. She still gets jealous, but she is 3. This is to be expected. She thinks her brother works at the hospital and enjoys going to the ‘pony room’.

We know to our cores that our lives have changed for the better. We are so damn lucky to have both of our children in our lives. Rowan has changed us and will continue to move us toward greater compassion and humanity.

So the positive outcome we were looking for has settled in.  We have a wonderful little family that is suppored and loved by so many. We have a smart, sassy, beautiful daughter who still thinks I’m her best friend. We’ve got a good partnership that, with much work, is getting better all the time. And we’ve got Rowan, who brings us gut-wrenching joy and love every single day. What more could we ask for?

Routine

I haven't been good about writing on here lately... I blame my iPad.
It seems it's much easier to just use that little thing to watch shows, check emails, and to stay connected. For some reason opening up this 'huge' computer has proven challenging!

I have been meaning to write, though, about so much. Every day I think, 'that is something to tell', or 'remember how that feels for the blog'. But then I get home and it all disappears.

Tonight, though, I am sitting on the floor looking at our Rowan and wondering about a couple of things. 1. I wonder if we have just gotten used to this diagnosis, or if we've accepted it finally- because I haven't cried about it in a while.  That worries me, I think. I don't think I really want to accept it.  Maybe I do. I don't know.  I have noticed, though, that a lot of things have become routine in our house.  I call the doctors several times a week or they call me. We check ketones with test strips and cotton balls.  We make up ketogenic foods. We set up therapies, we get Rowan eye exams, we get his labs done, we order medication refills, we order special formula, we track mood, appetite, bowel movements, sleep patterns. We sign paperwork, meet workers, go to more appointments, get EEGs, upper GIs, chest X-rays, fax doctors, call doctors, have doctors speak with each other. And it's all become routine.

Scary how quickly that has happened.

2. I wonder about his eyes.  Rowan's had a couple of visits from an eye specialist who is trying to determine whether he has Cortical Visual Impairment, or CVI.  I think both Steve and I know he does.  Some days he seems to see much better, but most days he doesn't track objects, has a difficult time focusing, doesn't have a flinch-reaction and seems to like gazing at lights.  Children with CVI are also known to need more stimuli in other areas- and Rowan seems to really need a lot of movement.  They're also more vocal... So I guess that's what's on my mind tonight. I think I'd just feel such relief to know he could see his sister and us. It really saddens me to imagine him not experiencing the world like we get to.

I wonder how he feels; on so much medication and being poked and prodded and measured and tested...I hope our sweet boy feels all of us loving him through it.  I hope he knows that I carry his heart in my heart.



Here is a picture of Rowan on his 1st Birthday- What a handsome boy.

Ouch

I really don't like creating a blog post without a picture in it, but since I've been too lazy to upload new images from my camera lately, this will have to do... (and a warning, that this post probably won't be super flow-y)

I'm sorry, I guess, for people who come to this blog and think I write about Rowan too much, or who get tired of reading about how I'm feeling... but this is really how it is, I guess, so it's what you get.

So much has been good lately; my relationship with Steve has gotten better and stronger, Lily is great and is an expert at using the potty, and Rowan's been healthy and seizure-free.

I realized the other day, though, that this won't last forever with Rowan. His seizures will start again- it's just a matter of time. I was telling someone it feels like I'm just waiting for the dropping of the other shoe.  Then this weekend I thought I noticed some more Infantile Spasms...

We adjusted one of his medications again and he seemed really happy this morning again, which was nice to see. I know we'll be fighting seizures forever.



I've been thinking about our little boy so much lately.  Those who know us know that Rowan's not the best sleeper. At all. In fact, he really sucks at it... So we've tried something a little different with him to try to get him to sleep better and so he doesn't wake Lily up: We put his mattress in our walk-in-closet and built a little pillow fort around it so he can't slide off.  He gets his space and Lily gets hers. We did this so we could try to re-train him to sleep without waking up every two or three hours to eat or to play.  He seemed sturdy enough to try this and it worked well for a week or so.  The past few nights, though, he's been pretty fussy and just can't seem to sleep for too long at a time.  I go in when he's crying at night and the look on his face is so sad to me- but I'm not really sure why.  I guess I just wonder what he's thinking or how much he understands. I hope he's not scared, is my point.  Not of the closet- but just of the dark and of lying there...

I was thinking last night about the day we found out, again, and was just so sad. I guess I'm just sad today... but a good thing has happened, I think.  A woman emailed me who lives in the area. Her daughter has a diagnosis surprisingly similar to Rowan's. Reading her blog broke my heart all over again... for her and for us.

Don't get me wrong, I see the good- I have to. I count my blessings and I try to stay positive. It's such a strange dance- the one with reality and hope and sadness and a positive outlook. I guess one just tries to not stay in one place too long- it's good to look at all sides.

My grandma and I talked the other day. She's amazing. She makes me feel like I'm doing a good job and I think the fact that she's proud of me makes me want to do better.

So again, I'll do better.

Adaptation

Sometimes when I look back on just how drastically our lives have changed since we found out Rowan has Lissencephaly, I'm amazed we've managed. Of course we had to first let the diagnosis sink in, which took quite a while for me. At first I remember not really believing it, I guess. And more than that, just trying so darned hard to not break.
Rowan was diagnosed on a Tuesday and I came back to work on Thursday of that week. I felt terrible for missing days only three weeks after I'd started in my role at The Forum.
Anyway, slowly reality crept up on me and I found myself crying at times I felt appropriate... In the car, mostly. I'd cry at home before bed, when I held him and saw him so fragile...
Today it seems a bit easier to digest; this huge life change. I suppose because he's doing so well lately.
Rowan has gotten so much stronger. He's holding his head up so well and loves standing up; with a lot of support, of course. I think he feels really good when he gets to use his muscles rather than just lying there.
He rolls over really well and isn't having any seizures at the moment. So, for the past couple of weeks I've been in bliss at the fact that he's not at the doctor all the time and seems happy.
Then yesterday we met with a respite nurse from Easter Seals. She's wonderful and we're so excited to work with her.  But- we met with a respite nurse.
I just can't stop thinking about that fact. It's a good thing, don't misunderstand me- but again, it's just more to swallow and more to adapt to.
I assume this is how life will go.

Life is good- we're very fortunate. Sometimes, though, I just don't want to deal with the paperwork, appointments, diet, refills on prescriptions.

We need to think about our living situation soon, too. We're in a condo that has stairs going down to it. We'll have to try to sell that- at a loss, of course, because that's just how things are right now, and rent a rambler until Steve graduates from NDSU.

What's my point today?? I'm not even sure. I guess it's just a day to let things sink in and to remember that, in the middle of it all, we're very, very loved.

And both of my children were happy as ever this morning- which means we're doing a good job.


P.S. Guess who's going potty in the potty chair?? 

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.

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...

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.

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....

Hopes

Dear Rowan,

I saw the images of your MRI today. I've wanted to see them for weeks. I wonder why, though.
Maybe I just wanted to see if this whole thing was real. It is real, I know that... but I guess I needed proof.
Mostly, I wanted to see your little brain. I wondered what it looked like. I hoped that maybe it wasn't that badly damaged as other baby's brains with Lissencephaly are.  I thought maybe only a couple areas of your brain were affected, but that maybe some was normal and was ready to learn- to absorb the world.
Well, my dear, it all seems to be affected...


In a way, I wanted to jump into those pictures. I wanted to stare, and look, and to be near them, I guess.  I wanted to curl up in them and examine them for some hope.  I have no idea what I'd look for- I'm no expert- but I'm your mom and I want to take it all away. I know there's no fix. I know there's nothing I can do but hold you and enjoy you... I wanted to see those pictures, but now I have proof. And I sit here wondering what to hope for.

Hope is a funny thing, though.  I doubt I'll ever stop hoping for you. I hope I'll never stop hoping.

Today I wish the medicines you're taking will relieve you of enough seizures that you're able to interact with us and to make noises and to look at us.  I also hope all of the medicines don't sedate you so much that you aren't even present.  I want that one little golden window somewhere in between.  That's what I'm going to pray for as often as I can.  I pray we can have some time with you every single day where we know you're with us and where you can understand that you're a part of this family. I want you to feel so loved, Rowan. I want you to feel safe and taken care of and I don't want you to ever, ever feel like a burden to us. God, I hope you never feel that.

I miss you more than I could ever explain- and my heart hurts.

I think I want those pictures of your brain, though, because I want every single part of you and every single memory.

Today your daddy and I are sad.  But we love you so much, my dear.

Love, Mommy.

By & by

It's a new day- or is it?

A strange thing days are now... In the way that each is different, each is different. But they've all felt strangely the same. Get up, hold and kiss Rowan, get ready for work, get Lily ready, drop her off, feel guilty, miss her before Nikki's door closes, and drive to work. Try to focus at work and earn the money I'm paid. Wonder all day how Rowan is doing. Call Janet daily-or she calls me. Call the doctor with questions, call the nutritionist with questions, try to focus on work and earn the money I'm paid. Hold back tears, hide worry, make jokes, give back to people...

Lily is changing so much. I hope I'm paying attention to that. I hope I see it all. I hope I'm being a good Mommy to her. Rowan is remaining fairly constant. Some days are better and some are worse, but most are similar to the day before. And that is ok.

I've tried to give more hugs to the kids- and even to Steve. We could all use them and our time together isn't guaranteed, so I want to make sure the three loveliest people I know know I love them without question.

I think we (Steve and I) are doing well. I'm sometimes surprised we haven't fallen to pieces... But every day I think, "tomorrow I can do better". And every day I'll try.