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.

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.