update on my girl

I wanted to post a few pictures of a very fashionable girl! As soon as a camera is on her, she gets a goofy smile- similar to her mother, I suppose.

Lil is 5 now and is amazingly smart. Her favorite thing to do is to color. Her favorite food is cake.

She has to wear navy, khaki, white, or light blue to her school, but I try to keep her clothes good and comfey.

Cool striped pants

adorable ruffled pants

Lil got to go to Grandma Gretchen's for the weekend. She made sugar cookies shaped like princess stuff and cooked crepes.  

Lilyism- Last night I noticed she may need to use the bathroom, so I told her to listen to her body and to go into the bathroom. Her reply: 'you're not the boss of my butt'.

That is all.

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.

Summertime

I promise, I'll try to write more regularly- we have so much going on and I must remember to share...

Lily's had the Summer off of school, which she really needed.  She has been a busy girl. She's taken two sessions of Critter Camp at the Zoo and is now a Guppy in swimming lessons! Her baths take longer because she's been practicing putting her face in the water.
She's gotten to spend time with the Grandmas for longer periods of time, too. After a week with Grandma Joyce and her cousins, she was whipped!

She's been spending lots of time with Steve this Summer, too, resulting in her learned a few new phrases along the way thanks to good ol' Dad!

I've been doing a bit of work at the wood studio on a Little Free Library and she came with me one day to help...

Rowan has had a good Summer so far, I guess. He's been happy for the most part and has been attending school during June and July. He's pretty much a stud.

  The problem is that he isn't gaining any weight. He's been visiting Gillette Children's Hospital for almost two years now and has lost weight since his first visit.

When he doesn't have an appetite, he doesn't get enough fluids, food and doesn't get any of his medicines. Then it's a cycle of trying to get him back on track. And sadly, we don't really know what medicines and doses are doing the job for him. He pretty much never gets his night medicines.

They decided he needs a G-tube and we now have an appointment to meet with his surgeon and with his Neurologist on Monday, July 28.

During his last appointment, Steve conferenced me so I could hear what he and Dr. Norberg were discussing and when she said her recommendation is that we fast-track the tube, I was overwhelmed with sadness. I wasn't prepared to hear that on the call, so it did take me some time to process. Once she explained that Rowan would get all of the nutrients and fluids he needs as well as his medicines- and that he'll still be able to enjoy some foods, I felt comforted.

He's been choking on more and more meals lately and it's been taking him longer to swallow, so I really do think it's time. I'll keep you all in the loop on this.

And finally, here is a picture Lily drew of Animal (from Sesame Street) with his friend- I think it's amazing and wanted to share it.

 

I definitely have more to share... Our Fourth of July was great fun- and Steve is moving to Philly in 8 short days.

Stay tuned.

 

When the boss is away....

Well folks, the boss has left the building.

Steve and I are borderline giddy with the anticipation of not being berated, glared at or corrected. The tension in the house has subsided due to the removal of the egg shells we've walked upon for so long.

No longer must we live in constant fear of saying the wrong thing- or of not hearing correctly. (In case you're wondering- not hearing correctly is a huge deal. If you accidentally don't hear something the soft-spoken boss says, you're really in for it.)

Threats of physical violence are behind us.

The boss has gone to visit the Grandmas.

Vomit.

Boy vomits twice last night- girl tonight.

I worried last night I'd have to take row to the ER, but after a bm he was great... Lily went with kate tonight and got sick, too- poor kid.

Tonight Rowan is ok. Lily is loved. Steve is in Washington and I miss him. Life is good.

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.

Dear Lily

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

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

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

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

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

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

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

Love, Mommy

The reality vacation

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

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

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

Rowan was really out of sorts this particular weekend and it took a toll on both Steve and me. I'm sure it got old for the family, too- I felt like I didn't get to spend as much time having converstations with people as I'd have liked. And I know Steve was feeling similarly.

We are quickly coming to the realization of the overwhelming nature of special needs. We get a ton of help, that is for sure. But as the months go by and as Rowan gets bigger it is harder and harder to comfort him when he is upset. We also so rarely know what is even bothering him- and he seems to get the most upset on weekends, which gets difficult. 

He likes his routine and doesn't enjoy being cooped up in the house. We're learning that about him. He's starting to express himself; likes and dislikes, which is wonderful. 

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

Sometimes vacations do not feel vacation'y.

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

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

No news is good news.

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

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

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

Lily has been great, too- she is feisty and bossy while being completely lovable and sweet. She keeps us guessing.

Last night she was sleeping in my bed and woke up at 4AM demanding a shower complaining that naps were 'stupid'. Lily 1 Erin 0.

Here she is making a box for Steve on Father's Day.

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

And this is what I've been up to.

Lily rocks out

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

Boys

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

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

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!

Turns out going green is difficult.

The past couple of weeks have proven challenging to my Green mission. I can now see that these lifestyle changes will take much time to adapt to and that we'll all have to create new habits.

1. I failed miserably at traveling in any green way at all. I didn't plan well and we ended up buying lots of items at gas stations. My car looked like a garbage pit; plastic bottles, wrappers, etc. I was disappointed about that.
2. I did average last week during a 'test' shopping trip where I took some linen bags along with my Envirosax to use for produce. I did not have any jars with for deli meats and cheeses- but I did ask the worker to place two different kinds of meats in the same bag. The request did not go over well. I eventually convinced  her, but she quit making eye-contact after that, so I suspect she was irritated.  I stuck to the outer areas of the store and also picked up some bulk spices, oatmeal, and trail mix. All in bags, so I need to do better. 
3. I am packing actual silverware and cloth napkins for myself and Lily- She likes having her 'mat' for lunches at school.
4. I've done pretty darned good job at using up left-over foods and foods that will go to waste. I roasted some tomatoes in the oven with some olive oil and sea salt, and they were delicious! I put them in a salad and ate them strait from a bowl.
5. I'm doing well at refusing items we don't need in the house but need to be better at ridding the house of things we do not use or need. Our local thrift stores have gotten quite a bit, but will surely get more!
   
    I decided to do worm composting rather than purchasing the unit I really wanted. After researching, it seems like a better plan for our house. And Steve is working up this whole Aeroponic growing system, so perhaps some of my compost can be used in the plants we grow with soil in the tent.

Oh! I did end up making some body butter I am really excited about- I used this recipe. I added in some Eucalyptus to the mix at the very end and it's really a lovely smell. I use it on the kids and Steve and I love it. It's super great for Rowan, too, because we have to watch that he doesn't get any carbohydrates through shampoos and lotions.

 This recipe made one large LeParfait container and one small one, (the one pictured) which I've brought to work.


It is thick and creamy and is just wonderful. I would be surprised if I ever bought lotion again!

Erin Goes Green

Alright- New obsession.

And if it's my new obsession, it's about to get real for the Hammer Mayer clan.  Zero Waste Home is where this all began, and I'll keep you updated on our progress!

 THIS. This is going to be in our house soon. I've been given the ok to order it (after much discussion, several promises, and a tad bit of begging I'm not even remotely embarrassed about) from my partner.  Here's the deal, folks. I have always, and I mean always wanted to compost. I have no idea why- but I'm so stinkin' excited about trying it.
(please don't be like the juicer, please don't be like the juicer...)

These awesome jars came in the mail yesterday. Huge box and lots of packaging, but I have plans for that- Lily and I are going to build something with the box and use it for art projects.

I went shopping today with one jar and took a look around the store from a different perspective. I was checking out the bulk foods section, the bulk seasonings section, the produce, organic, olive bar and salad bar primarily.  I wanted to get a feel for the types of foods available so I can plan some meals.
I also wanted to gauge how many jars and bags I'll need to bring home different items.

Since I'm also on a mission to rid our house of BPA plastics and chemicals, I have been paying much more attention to packaging, as well.

I'm at the very beginning of this journey- but have made one switch in Lily's breakfasts I'm pretty proud of; She loves pre-packaged oatmeal- and I haven't minded giving it to her much because I think it helps keep her regular and because we've had some issues with number 2's over the past year.

Instead of her pre-packaged sweetness, I've been making her:

• Raw Oats
• Sugar in the Raw
• Cinnamon
• Hemp Seed
• A few chocolate chips (to keep her interested)
• Almond Milk

She's happy and I'm happy. I'm sure I'll find ways to make these little recipes even healthier, but for a beginner, I'm  not disappointed.

Ok- that's it for now.
Tonight I'm going to make some whipped body lotion.
Pretty excited.

Zero.

Pretty sure I bought this ebook: 

 

And now I want this: 

Composter from Envirogadget.com

Things are changing in the Mayer Hammer household... Resistance is futile!

(update)

I just ordered these:

 

 and got some mustard seeds- I don't even like mustard, but Steve does. I'm going to make him a delicious gourmet blend.

VNS and Rainy Days

I took Rowan to the Gillette Children's hospital last week so he could have his Vagal Nerve Stimulator implanted.
I was super hesitant about it- and honestly still am. I don't believe he needed it this soon, but it's done now. The whole thing just reminds me that I'm his advocate, and that I need to make sure I'm 100% comfortable with his care and the decisions that go along with it.
Everything has gone really well so far, though, and he is healing well and chattering all day and night.

Rowan and I drove up last Tuesday afternoon and stayed with Aunties Tessa and Ashleigh. That was fun for both of us. We got to hang out and eat tacos and have some ice cream

Tessa and I left early the next morning for the hospital. I got to go in with Rowan while they were prepping him for surgery and got to be with him when they put him under.

Here he is just out of surgery and in post-op.


And here's Row on some morphine:

While at the hospital, I got to meet with their Keto team. I'm so so excited to get back on track with his diet and the monitoring of that aspect of his care. It hasn't been well managed and I plan to make sure we don't slip through the cracks again.
I think some changes are in order regarding his care- but I'll need to be a tad patient and pragmatic. The right answers will come.


Rowan didn't like all of the wires and monitors and the laying around, but he did like his new weapon:)






Now for Lily:
We've spent some great days together lately. Girls' days!
Girls rule and boys drool; that's our motto...

We love to bake, we build habitats, she does science experiments, and she wrote a book at school.


On Saturday we had a special girls' day together. We decided to go outside in the morning to splash in puddles since it was raining.

 

Turns out it was freezing cold- so we went inside and had some cocoa:)

Steve and Erin get married

I suppose I should post a few pictures of our March 15th ceremony in New Orleans?

Don't be disappointed, but I have very few pictures of the whole week- and apparently even less of attendees!

 For some reason my photos aren't sending from my phone, so here's what you get!! Reverend Jerry Schwem kindly performed our ceremony and was a delight.

I'll post again soon.

Erin

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.

equals

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.