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-
I was watching Steve wrestle with the kids the other night- a pretty regular occurrence in our house- and, through the giggles and squeals I thought, 'what a wonderful thing it is for our children to have a daddy that gets physical with them'. It's as if they need it. They both love to be tossed around and to be roughed up. And it's good for Steve, too.
I was watching the kids lying on the floor next to each other while Steve tickled them- they were giggling and were brother and sister. Equals in the fun. Equals in the enjoyment of their daddy.
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.
He can roll both ways
He has been babbling with consonants
He has been working SO hard at sitting and propping himself up
He gives kisses- and will do so when prompted
He holds his head so well
He reaches out for toys
He can hold things for many seconds
He can prop himself up on his forearms
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.
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:
Today is the 19th of September. Tomorrow will mark one year since we found out our Rowan was sick.
I'm feeling pretty quiet and have found myself thinking more than normal about things. Reflecting more, I guess. I miss my boy kind of. I've got him here and he is wonderful, but I kind of miss the idea of him being a running, playing, talking little boy. I don't think about that much, because I love him like we have the same heart and I don't want to feel anything but joy for him and his life. But I went there a bit tonight.
I was wondering what that tuesday was like. How did it even go? It's hard to remember. The doctor told us- but then what? I cried. And then I think I shook my head a lot and said 'no- this isn't right' or something similar.
Then I remember it being night time and I was alone in Rowan's room. I sat in one chair. Then another. And nurses would come in through the night to see if I was ok. One told me I should sleep. But I was scared to sleep. I didn't want to give in to my devastation. I just wanted to figure it out. I was scared to fall asleep.
Today I'm not scared to sleep. That is a gift. He is a gift.
For one little soul to change so many others is really something. He must be here to change us... To help us.
This week has been filled with giggles and all kinds of growth for Rowan. It's been wonderful watching him make advancements that probably would seem totally insignificant to other people- or are things that 4 month old babies are doing- but I couldn't be happier!
Rowan was sick for a few weeks last month with ear infections and a lingering cough that needed nebulizer treatments. On top of those issues, he was getting in about 4 teeth at once and was not a happy kid. He was pretty sleepy and medicated for those weeks and when that happens, he loses whatever strength he gained and seems to have to start all over again.
His caregiver, Janet, and I were talking about how much we missed when he used to be able to hold his head up and look around when lying on his tummy. Instead, he'd just lay on his little face with his arms down by his sides. Now, though, he is rolling back and forth again, is bringing his legs up underneath his body, and is supporting his head really, really well.
Yesterday he was playing with Lily's purple tutu and seemed to like the feel of that... and he seems to be mimicking some language. There's a lot of back and forth 'talk' and sometimes I can hear him say 'hi'... or the aaiiiieeee sound, I guess.
He's also started demanding more attention- and that's amazing to watch. He has been much more assertive this week and seems to be learning cause and effect. If I make this pouty face, mommy will pay attention to me and will talk to me.
Love it!
His vision has been great this week, too- which is related to all the learning, I'm sure. It would be very difficult to want to do anything if you couldn't see, right??
Last week a vision-specialist came out and did an assessment of Rowan. Here is a really cool powerpoint about CVI and the rating scale... Rowan is a 1-2 or a 3-4 in most categories depending upon the day.
It has been such a gift to learn all about what will help him to see better, what things he likes to look at, and how to work with the CVI to enhance his days.
Want to see how happy our boy is this week??
Take a look...
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.
Last week I had prayer on my mind and there was some wonderful discussion on BlogHer. Over 1700 people read the post, which is testament to the site and to its reach throughout the world.
I
have continued prayers for Lucas- whom I'm happy to report is on the
mend, off of his ventilator, and may come back to Fargo from the U of M
Hospital in a week or so. What a difference a week makes. Lucas
went from critical condition and a helicopter ride he might not have
survived to sitting up, looking at books, and smiling. He's a fighter,
that's for sure. Prayers, energy, medicine... whatever you'd like to
attribute his improvements to; he's improved.
This type of stuff
changes you, you know?? This having a sick child, setting up camp in the
hospital, wondering all the time if something will happen... I'm sure
you're thinking I'm saying something so obvious; of course it changes
people. But I mean it REALLY changes you.
I'm fortunate to know
Lucas's mother and to have spent time with his family. We've been up in
the hospital two or three times together and have a pretty good
understanding of each others child's conditions. And there's something
about that... the knowing what you know you'll go through. The knowing
of the struggle that awaits. The knowing that the life you planned is going to be totally different and will include excruciating heartbreak.
'My
guts are different' is the only way I can really describe how I feel
since Rowan's diagnosis. My heart, my guts, my cells. All have changed.
There are some things I just don't care about anymore. I have had a
change of focus and now appreciate so much I feel I didn't even see
before. I'm overjoyed by some of the smallest things Rowan does and by
what may seem to others to be little
accomplishments. Lately, for
example, he's been going up on his knees when lying on his tummy. He
tries to use his arms a bit more, too. This is huge, my friends. I'm
so sad to share that I kind of gave up for a couple of weeks after we
brought Rowan home from his first two hospital stays. He was so
lethargic and was nowhere to be found...My baby boy was just gone. I
thought that he'd remain sedated and limp- and I conceded. I wasn't
giving him any credit for how his sweet little brain could process when
not wrecked with seizures. I didn't have a clue what he was capable of. I
sold him short.
Now, thought- expectations have changed. He's in
therapy and seems to be doing well. He's, of course, no where near
where other one-year-olds are. He can't sit up, can't talk, cannot
grasp anything for more than a second or two... but he can change your
guts.
I wonder what the future holds for our little boy? I am
excited to watch him touch others and learn in his own way at his own
pace.
I know one thing; he has made me an entirely different human being... and for that, he's the strongest person I know.
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.
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.
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...
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.
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...
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!
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.
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.
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.
I've been thinking a lot about people and resiliency and all that keeps us going. I wonder how people manage to keep their heads above water during difficult times... it's amazing, isn't it? We all have a little something in us that keeps us going when we feel like we want to cash it all in. It's in there. It's in me, I guess.
I've really wanted to be alone lately- or more specifically, I haven't wanted to get close to anyone. I have wanted to keep busy and handle tasks and just kind of tread water, I guess.
I want to be quiet.
The past couple of days have been a bit tough. Rowan has regressed a little bit- more seizures, longer seizures- he's groggier and much more irritable. He started a new medication last night- so three for seizures now, one vitamin, one for muscles and Ativan as needed for seizures.
I think we, well I... I can't speak for Steve... got my hopes up that we were making huge strides and that he'd be his normal self again and stay that way with the medications. And I think we can still get there, but it's become so much more real to me that this is going to be a long road full of questions, doctor's visits, medication changes, questions and more questions. Each night I wonder how we can do this every day. I'm tired.
I know I sound pretty negative right now, and I'm sorry for that. Today I feel overwhelmed and scared and so conflicted. On one hand I have the loveliest little girl I could hope for- she's amazingly smart, patient with us, and spunky. Her chipper little voice makes my days and minutes and I adore watching her learn and grow and become her own self.
On the other hand, I have this beautiful little boy who probably won't do all of the things Lily can do. He struggles to stay awake, to have a half hour lately without seizures, and to find noises with his eyes. Last night he was laying on the couch and was pretty fussy. I was moving his arms and legs to try to cheer him up. I put his warm little hands on my face and held them there... and I thought to myself, 'Erin- remember those warm hands. Remember what they feel like and remember that there's so much life in there.' I never want to forget his hands.
Cards, letters, angels, and a book- Bright spots that I revisit often.
Earlier tonight I was feeling a bit down...but then I saw this and my heart melted. Rowan is having a really good night and I wanted to share it with you.
