Shrimp Curry...

I usually follow (loosely) this recipe to make Chicken Curry. The recipe in this video is bo-ring...so I add a lot more spices and chilies. This was the plan for tonight. I already had all the ingredients...but at the last minute, I decided to change it up a bit, and make it with shrimp. We live on the edge around here...it's how we roll.

I've put down the ingredients and instructions below, to share, but also so I'll remember next time! The only thing I'm not certain on, is the amount of time everything cooks...I cook by smell, and sight. If it looks and smells right, it will usually taste right. So these are all estimates. Measurements are to my taste...if you try it, you might have to tweak it to your taste.



(This is the only photo I got...before we chowed down!!!)



1 Tbs veg oil

Medium chopped onion

1-2 cloves garlic chopped

Green chilis...I used 6, chopped up. (I've learned to like my food a bit more spicy because my dear husband likes it at burn your tongue off on the scoville rating.) Also, these are the little Thai peppers. If you can't handle the heat, use a milder pepper...and to make it more mild, just slit the pepper down the side, and throw it in whole. Then take them out after the curry is cooked. This way the seeds don't get in the mix.

1 tsp cumin powder

1 tsp turmeric

1-2 tsp Garam Masala

1 tsp coriander powder

3 TBS Butter

2 Tbs Tomato Paste

1/2 pint half & half

20 raw shrimp

Handful of fresh coriander/cilantro (same thing)

In large skillet, heat oil and add chopped onion. Cook until translucent, and starting to caramelize. Add chopped garlic, and chilies.

Add cumin, stir into onion/pepper/garlic. Next add turmeric, coriander powder, and garam masala. Add butter, and cook for 3-5 minutes. Add tomato paste, and mix completely.

Add the shrimp, and cover to cook. Once shrimp are almost cooked through, add half & half. Cook for another 5-10 minutes, until it's simmering.

Add fresh cilantro before serving.

I wonder...

Just how much longer am I going to be able to hold him and snuggle?



It's still one of my favorite things...to just hold him close and breathe him in. And when he is tired and snuggly, I take as long as my legs can stand him growing heavier with his sleepiness. I think I'm going to need a bigger chair soon.

Positioning...

Even with his constant growth, Max still has to have support to sit, and positioning. His weight, along with the low tone, causes him to want to either lay flat, or have someone holding him up properly.

Therapy has become a 3 adult event, in order to get him in the right position. And while there are all kinds of gizmos that help with positioning for kids who have low tone and coordination, they cost a ton, and no one pays for them!

When these "not medically necessary" items are needed, I go to the web trolling for equipment. I look on Craigslist, I look on Ebay, and I keep an eye out on our online Special Needs Parent's Support Group, Parent to Parent CO to see what I can find.

A couple of days ago, someone posted about some wedges that I hadn't heard of. They got them from another family, and wanted to pass them on to the next family because their child had outgrown them. I quickly looked them up, and knew this would be a great fit for Max. I emailed the mom and set up a time to pick them up.

They are called Unishape Adaptive Equipment. We got the three wedge set. I have no idea what these cost brand new, but they have been through two special needs kids, and still look brand new!

Max's therapists are going to be over the moon when they see them. I have to admit, I'm pretty geeked out!

Here are a few photos of Max in his new Unishape positions. You can click on the link above to see all the different ways we will be able to use these. Each piece comes apart to move into different positions...hopefully that's easy to see on the photos. There are a lot of different pieces.













The moral of the story is...someone else trash, in this case very expensive trash, is another piece of freedom for Max!

Monsta-Mobile...

"I would like to get a vehicle that we can as a family ride around in comfortably and safely and for long distances."

I wrote that on my non-resolution post at the beginning of this month. This weekend, Steve flew out to Maryland to bring our new van home. He drove all day Friday and Saturday, getting here around 2:00am Sunday morning.

It's a 2006, Dodge Sprinter.


A magnificent beast of a vehicle. A monster, really. And just what we need for Max. Yes, we could do with a bit smaller car for the necessities, like Max's wheelchair and a bench seat for Abbey to sit on. But, nothing else. AND...the biggest issue...Max's size. He's already so tall, and heavy that it is very difficult for me to do his diapering in the car by lifting him out of his seat to the floor. This van will allow us to do his care while standing up, and putting him on a bench. Less strain on us all.
Here we are getting ready for a diaper change...

(With room to grow!)


And...there's room for the whole gang!


This was a special treat...Max and Addie loved being by each other in the car. Something that hasn't been able to happen since she was a teeny tiny baby. They are sitting in the front row of seats, but we'll take that row out for a wheelchair lift (yet to be purchased), and that's where Max's wheelchair will just roll right in and be parked.

Max enjoyed his first ride in HIS van. He got comfy right off...


Yes...I think we'll need to move that front row and move him back before getting the lift!

Grab a cuppa...it's a long one!

We had Max's metabolic check-up today. It was an early appointment, 9:00am...not terrible, but just getting up and out of the house that early is a pain. Max didn't want to wake up until 8:00, and even then he was pretty bummed to be out of his cozy bed!

I had called ahead to make sure we got back to a room right away, so we weren't waiting in the waiting rooms. Thankfully we were taken right back, and just had to wait a few minutes. While I fed Max, we went over all the usual questions the new students have to ask before they take the info back to the doctor, before meeting with us.

Then she said she would go talk with the doctor...but she said a name we didn't know. Grrrrr....a new doctor. Let me say here, our doctors are great. They all work together, and one main guy is the decision maker. But when we get new doctors, more often than not, they want to change things up. And we don't like fixin' what ain't broke!

Steve was getting bristly...I was getting quiet, bracing myself. I did not feel like being defensive today. I just wanted to see our doctor, have a great report and leave happy. We sat waiting for the doctor to come in, and to keep Max from getting fussy, used the fantastic ipod touch to play his opera music.

The doctor came in after about 15 minutes of going over Max's current history with the genetic counselor student, and introduced himself. Max immediately perked up. He had an accent. Max loves accents.

He shook our hands, and then introduced himself to Max. This was different...he was actually talking to Max, and waiting for a response. Then he asked Max what he was looking at, which we answered. He's listening to his opera. Oh....opera! New doctor loves opera. So he asks Max who his favorites are. Waiting for an answer from Max, and when Max answered with "yeah". He gave him some choices of his favorites, and Max answered again with "yeah, ah-ah-aaaah!".

We were warming up to him real fast! He looked over Max's last labs and wasn't worried about any of them. He didn't want to change anything, Max looked great. He's been healthy, so we didn't need to change any of his treatment. And he was going to check with the main doctor about increasing medicine doses due to weight gain.

Oh...yeah. Weight gain. The boy is a whopping 57 pounds. And he is a half an inch short of 4 feet tall.

It was a relatively short visit. Now alarms going off, just encouraged with his weight gain and overall health. And we got to meet a new doctor, that massaged Max's feet through the entire appointment. Because, being from Germany, he told us they are really used to a lot of different ways of treating, not just through medicine. But through massage, and acupuncture and maybe even opera, he said with a wink. I liked this new doc, and Max really liked him too.

When it was time for him to leave, the student said she would go ask our usual genetic counselor about a lab test they were thinking about doing. We waited for an answer, and our regular genetic counselor came in. She exclaimed when she came into the room, "MAX!!! YOU'RE HUGE!!". She asked him how he was, and if he was listening to his opera. And he was answering with his special language. When she said, "You look like a big kid, not a baby!", Max answered, "Yeah, aaaw aaay-eee! (Yeah, not a baby)" And she understood what he said, she repeated it back to him, and she turned to us with a red nose and tears in her eyes, "he is communicating!". It's special because she's known him since he was 4 months old...and has seen him through all of his ups and downs.

After she was in there for a few minutes, the nutritionist popped in, and again shock and awe! Last time we saw her, he didn't have his g-tube. She worked so much with us to keep him from getting the g-tube. But she was thrilled at what a big boy he is now!

They asked if we had seen the head honcho, yet. We said we hadn't...and didn't expect to. He really doesn't see patients much anymore in the clinic. And we're okay with that...he still makes all the treatment decisions. But, he also hasn't seen Max since before we left for England, almost 2 years ago (really...almost 2 years?)

So they ran and found him to come see Max. When he walked in, it was a very different reaction. He greeted us with his quiet Belgian accent. Then looked at Max and smiled. And shook his head, looked at us and simply said, "he is very big!".

Then he got right to work, doing what genius metabolic doctors do...doing what he did the first time we met him 6 years ago. Examining Max...even though we had just had a thorough examination...and our appointment was officially over. He still looked him over, as if it was the first time seeing him. And of course, we let him. Max is alive, largely due to this man diagnosing him...examine away, man.

After he gave a good lookover, and tested his strength, he started spouting off 5 or so different tests he wanted ran right away. (Remember...after our appointment.) He wanted us to do a brand new study, that the doctor we had seen earlier was heading up. Okie dokie. Then wanted a few other tests run by NIH next time we were there, or before we actually get there, we'll just have to give consent for them the run the tests.

A side note...as to the very technical part of Max's metabolic disease, we have yet to find the mutated gene that would definitively give him the diagnosis. Right now, he has MMA Cbl-C, because it fits better than anything else. So we are always looking to really pin-point EXACTLY what he has. Won't change treatment, likely. But it will just help us know definitely, and for future kids.
I was really glad he stopped by to see how big he's gotten! We may come out of it with more answers.

And they all were ready for us to head back to NIH. We're hoping to get that done in the summer. We want to take Abbey this year, and make a little trip out of it.

All in all, it was a great visit. We got all caught up with everyone. And got the ball rolling on a few new things. Now we're home and boy I'm tired! But, the week isn't done...equipment guy comes tomorrow to work on Max's stander tray, and look at new seating options since our moose is outgrowing everything he has now!

And if you've read all the way to here...you are my favorite.

Supermoms Unite!

When Max was a baby, and newly diagnosed, I didn't know another person anywhere that knew what it was to have a life like mine.

I wrote about our days in emails, and occasionally on a first generation blog that only our family knew about. But no one really knew what we were going through. The hard days, and the great days, went unnoticed by most of the rest of the world.

And then I started blogging. And I joined a few list groups online for parents whose children have similar disabilities as Max. But it was still a safe place. I didn't have to really meet anyone in person, because they were all hidden safely behind my computer screen.

I've never been one to be quick to introduce myself in a crowd. I always feel a little weird in social settings. But every single time I've met another mom in a similar situation, I have been instantly at ease.

I think it's this sisterhood of special needs moms. There's no room for judgment, and tons of encouragement.

I've only had the privilege to meet up with moms whose children have a similar metabolic to Max's. But I've not met with moms whose children had seizures like Max. Until today!

Meet the Supermoms...

Heather, Maria, and Jenny.

I met Jenny through our pediatrician, and Maria from her, and Heather, from her blog. All of our kids see a lot of the same doctors. They're all in wheelchairs. They all have seizures. They all are tube fed. And, they all GET IT!

It was a great first meeting, and surely the first of many!

It's a busy week!

This weekend, we finally broke through our cold spell and got a couple of warmer days. I think we almost got to 50 degrees one day!

When the weather is above freezing, and the sun is out, we like to take Max for as many outside outings as we can. So we spent both days this weekend at the park!

Here are a few of my favorite photos from our weekend.

Duck walking on icy pond...


Max is outgrowing his own hats, so we stuck one of Daddy's on...


I guess this is some kind of black duck with a white bill and red eyes...I love the water drops...


Look who played with us...


Did you notice there were geese...a gaggle of geese...


A big ol' goose...


And I love this series of Addie...
Oops, fell down...


Cold, cold!!


Brush it off!!


What, I'm tough!!


And of course, a trip to the park with Ang, always proves exciting...









What a kid!!!


We have his bi-yearly metabolic appointment on Thursday. Which means a good 3 hours at the hospital, for one appointment. Which also means, I likely might not post again until Friday! Hope everyone has a great week!

Silence...

Max has been on a developmental upswing. He's talking a lot...like, after 11:00am, he talks non-stop until bedtime. He rarely cries anymore. Just talks and laughs.

And it's great. It's amazing. It's a miracle in the truest sense. And it is frazzling my every last nerve.

Not because I don't love to hear him talk...and not because I don't love to hear him laugh...and not because I don't know that 5 years ago we sat wondering if he would ever make a sound. But because it is so constant...10 hours of constant jibber jabber...at the tip top of his voice.

So forgive me as I capture my thoughts...enjoy a few videos of Mr. Max. And a few photos he took with my computer.

I love all the faces he's making in this video...



Here is one of him laughing when he's supposed to be sleeping!


And on to the photos...he pushed the mouse button to make the camera go off on my laptop using photobooth.










And finally...it's pretty cold around here...so Olive is just trying to keep warm any way she can. Like hiding in the covers.

2010...

I used to make resolutions. I used to make plans for the year ahead. I would crack open my brand new journal and jot down everything I knew I wanted to accomplish in the new year. But, having Max in my life has changed all that. Not that I don't hope for the future, or try to plan ahead...it's just that life so rarely goes according to plan around here. But I haven't stopped hoping...and haven't stopped dreaming. It's just that I can't and don't put a timeline on any of it.

Sure, there are things I would like to accomplish this year.

I would like to get a vehicle that we can as a family ride around in comfortably and safely and for long distances. Air travel is not the best choice for Max, anymore. But travel is. He was born of two die-hard travelers, and the boy gets antsy after not being able to get out for a few days...let alone see the ocean, or a big city. And yes, he does know the difference in Denver not being San Francisco...and the pond at the park not being the ocean.

That leads into the traveling. I am hoping to get to see my family this year. I never would have thought it would be YEARS in between seeing my family. It's difficult to even write that out. Time gets away from us, Max has some bad days, we don't know if he can make that long journey without having seizures we can't control, and plans gets changed. Then it's the fall/winter and we're into cold and flu season and we've gone a whole year without seeing parents and siblings and grandparents.

I would like to pay down some debt...but who wouldn't. I mean really, 2009 wasn't pleasant on the financial front for most. But we were hoping to pay down more than we were able to. I'm thankful for my income to help with that more in 2010.

I do have some personal aspirations for this year...but you'll hear more about those as they happen. I do believe it's going to be a good year...I have no reason to believe otherwise. We will celebrate our 10th wedding anniversary this year. That's really exciting to me. Not that we will get to go anywhere, or do anything real spectacular for it...like we had planned 10 years ago...but we are still here, together, and love each other more today than we did 10 years ago...and that's gift enough to me. (Although that trip to Ireland would have been grand.)

So here's to you 2010...I'm excited to see what you have in store for us.