Photo stockpile...

My computer was acting kind of funky last week, so Steve rebuilt it. When he rebuilt it, my beloved iPhoto went away. But being the fantastic husband he is, he got a newer version to put on again. I'm sure my constant whining had nothing to do with it!

So, it's Friday night...and it's raining-or snowing...and I just ate an entire mini watermelon for dinner. So why not load a blog post with photos that are now filling up my new iPhoto?

You're welcome.

Addie "helping" Auntie in the garden...


and digging her toes in...(truth be told, she didn't like it at all!)


coloring in the sunshine...


Spring flowers...


Her favorite thing to do in the garden...climb!


Mr. Dude just likes being outside...even if we have to cover his legs!


Poor, poor Olive...she looks so neglected!


A random flower I never planted sprouted up this year...


Addie using her little cup from Paris...


She thinks Auntie's camera is attached to her...


"Posing" for a picture...


Aaaaaand Dancing and dancing and dancing...





(She's wearing my Great-Grandma's apron as a dress, and she was twirling.)



This is where Max and I read Winnie the Pooh...




That's before it started raining...and snowing today!




And finally...my beautiful purple tulips!!!






Hope you all have a great weekend. Max and I will just be hangin' around...


As will Olive...yes she's got her head on a pillow...lazy dog!

A perfect storm...

I grew up in Oklahoma. Springtime in Oklahoma is one of my favorite times. The trees are gorgeous...flowers everywhere! But, it always came in second place to Autumn for one reason.

Tornadoes.

I hate them. You're having a perfectly beautiful day. Maybe a rain shower will pop up, and then out of nowhere, the sky turn green and the air goes still. Then it is anything but still. You have to run and find shelter. And just as quickly as it came, it's gone. Leaving you with whatever mess it left behind.

When I moved to Colorado, I was so pleased to not be dealing with tornadoes any more. At least, I THOUGHT we wouldn't get tornadoes here. In the 10 years we've lived here, we've only been in two semi-close call tornadoes. I've never had to take cover in a bathtub or duck and cover.

We had some wicked weather today. We woke up to very dark skies, and rain. But then a couple of hours later, the sun was shining and there wasn't a cloud in the sky. Max didn't want the windows open, so I didn't notice when the skies turned again. And if I hadn't been watching tv, I would not have known we were under a tornado warning.

I was immediately on edge. There I was, having a perfectly calm day, and then knots in my stomach...tension in my shoulders...a tornado was not on my list of things I wanted to deal with today!

Max was awake most of the night last night. He went to sleep fine, but at about midnight, he woke up with a seizure. Then again in the two o'clock hour. Then he stayed up until 4:30am. When he finally got himself asleep, and we got to sleep some.

With all the frenzy and talk of tornadoes today, it got me thinking about how seizures and tornadoes are so much alike. We'll have a perfectly good day. Max will play, and do new things, and be acting like he always does. Then out of nowhere, just as he gets to sleep...the air goes calm...and then whoosh...a seizure roars in.

They're violent, and unpredictable, and dangerous, and wreck everything you're doing in that moment...and leave in a flash. And you're left to clean up the mess they leave behind. A sleepy boy...who refuses to let his body get to sleep because he doesn't want to go back into a seizure as soon as he gets there. A mom and dad who are just on the edge of sleep all night, every night, waiting for the next storm to hit.

I hate tornadoes. I hate seizures. But the beauty of the spring always outweighs the storms. And the beauty of Max will always outweigh the seizures.

It was all yellow...

(Max relaxing in the cool breeze, taking up three seats in the house.)

Oh for goodness sakes...it's only Tuesday.

It feels as though it is at least Thursday! It's been another weird wild week so far. Max's seizures are hopefully on the down swing. I talked with his neurologist today, and we'll watch him for a few more days to make sure the medicine increase works. We'll take him in next week for an EEG to see if his brainwaves are all good too.

He had a doozy again yesterday morning, which left him with the tremor on his right side. It got to the end of the evening and he was just in a continuous tremor on his entire right side. Steve and I took turns putting our weight on his body so he would calm enough to go to sleep...which is the only thing that makes the shaking stop. This is not seizures, but just involuntary movement that can be brought on by him having seizures. He finally did stop last night, and got a good night of sleep. And no tremors or seizures today. Whew!

Today, he wanted to try "yellow"...his favorite word to say, and his all-time favorite color. When I asked Steve if he was ready for lunch, and what did he want, Max says, "eLLL-Luuuhl-eeeeeLLLL"...his own special version of yellow.

So I gave him some banana to chew on. He took several bites, and each time we would say "yellow", and while he said it, the banana would move around in his mouth until he swallowed it. This helped him just enjoy it instead of gagging or choking on it. I also only let him bite off pieces today, no spoon feeding. He seems to like that best these days. He ate about an inch off of the banana...pretty amazing for a kiddo who has been opposed to anything being in his mouth for a year!

This evening, when we were on our walk, we saw our chiropractor who stopped to chat on his way home from work. He told Max hi, and Max said, "eLLL-Luuuhl-eeeeeLLLL!!!!!!". I am guessing he was excited to tell him all about his yellow experience too.

I'll leave you with a video of the silly yellow boy telling us his age...he's got such a sense of humor!

A wild week...

Max really has been giving me a workout this week! He has decided he no longer needs to sit in any of his chairs...and can just up and get out of them whenever he feels like it. Today, that meant he hopped right out of his chair while I was doing dishes and scraped his face. I know if he was a typical rough and tumble 6 1/2 year old, we would have a lot more than a little scrape on him...but it scared me senseless! He could have really hurt himself, in just a moment!

We are hopefully getting his equipment guy out here in the next week to help with our new situation of not being able to keep him in one place without constantly having to readjust. He's a growing boy for sure! With the growing, that has also meant some seizures. Which usually come in the dead of sleep...so we're barely awake and functioning to address it. I got an appointment with his neurologist next month....but maybe sooner. They always put us down for one date and his doc will call and change it to another time closer that they couldn't see in his schedule.

Then there are the allergies. I had horrible allergies as a child. And Steve has horrible alleregies still...Max didn't really have a chance to avoid them. So, we had to call up the pediatrician today to ask about a different allergy medicine since the one he's been taking for a year has started to be less effective. We are hoping the new medicine will help with the extra junk he's been dealing with so hopefully the gagging on junk and throwing up will stop!

I am also working on the planning for our trip to the NIH in June. We have blood draws and forms to fill out and travel arrangements to make. I have been a busy bee!

Tomorrow I have a meeting in the morning for work. Then, I'm pretty sure we will be starting music therapy on Friday...I haven't heard back a definite on that.

But for now, I think I'll read or play a game on this iPad. It is such a curious gizmo!

Hello Spring!!!

We've been waiting for you...



We're outside a lot...and trying to enjoy the beautiful weather. I hope it's beautiful where you are too!

Crack-a-back...

I went for my monthly chiropractor adjustment yesterday. It is time to start taking Max again, so we went as a family.

Dr. G. started with me, while Steve handled Max for a few minutes. He asked how I was doing, and I told him for the most part good...but...my feet still hurt.

Still hurt...meaning a month and a half on, from my trip to Paris/London. Last month he worked on my calf muscles, which as he said were really tight. This time, he focused on the muscles that connect from the calf muscles to the feet.

I thought I was going to leap off of the table when he started stretching the muscles on the bottom of my feet. Oh my gosh...I didn't know so much pain could be found at the bottom of one's foot.

I don't know all the magic of chiropractic care...and I know a lot of people think chiropractors are in the quack doctor category. But I am constantly amazed at how much better I feel after going.

My right foot was so tender and sensitive, I couldn't walk comfortably on my bare feet. He gave me a few stretches to do, five times a day, and told me to wear shoes around the house for a couple of days to allow my feet to heal up for a bit. (I hate wearing shoes in the house.)

Tonight, the pain in my heel is much, much less. I didn't realize how tight my calf muscles still are. Every time I do the exercises, I really feel a huge stretch. Methinks it's time to pick up yoga.

I've not ever injured myself walking on our long trips before...We always walk a ton more on vacation than we do on a typical day at home. And, I know exactly where the pain started...but what to do? One has to take oneself to the top of the Arc de Triomphe when one is in Paris! Next time, however, I will take the stairs a lot slower, and might wear more sensible shoes...maybe.

Here's hoping that next month when I go back he won't have much to fix...well...except putting my spine back into place from torquing Max all the live long day!!

Toothless Wonder...

Sunday night, Max decided he did not need to sleep. So he, Steve, and I were up and down and up and down before almost 4:00am Monday, when Steve had to get up to go to the airport.

Then Max went to sleep. And sleep he did!

I canceled his occupational therapy, because at 10:00, he was still sound asleep, and I was not seeing him being friendly and awake enough in two hours for therapy.

I woke him enough to get him into his chair so I could start feeding him, and get his medicine into him. He had a pretty rockin' seizure at about 7:00am, so I really needed to get his medicine in him. Especially considering he threw his medicine up multiple times Sunday night...because he was upset and gagging through his screams.

Steve was in California all day, and Max slept in his chair and I lounged in my pj's until almost 4:00pm!

At one point, I woke him to change his diaper, and looked in his mouth to see if that loose second tooth was any looser. He hasn't let me check on the second tooth nearly as much as he did on the first tooth. But he was so out of it yesterday, I was able to get a hold of it, and it came right out.

Even though he's pretty proud of being such a big boy with TWO missing teeth, he still doesn't want me taking a photo of it!



Almost have a glimpse of it...


MAX!!! move your tongue!


There it is...


And, this is how he's been since he lost it. He's so happy he can chew on his hand again without those annoying teeth moving around on him!

Super-Onesies for a Super-Max!

There is no question that Max has grown a LOT in the past year! He is a BIG boy! We can't get him to sit still long enough to get a weight on him here at the house, but we think he's somewhere between 55-60 pounds. And he is right at 4 feet tall.

He's recently outgrown all the onesies I made him last year. Both in space around his belly and length! All of his old t-shirts were size 4T. So over the weekend, we got him some shirts that fit, and I made him some new onesies.

I've been asked several times how to make these shirts, so I took photos along the way to share with others who might want to make larger onesies for their growing kiddos that still need the full coverage shirts a onesie gives.

Max is still in diapers, that get loose if he has access to them. And He also likes to pull on his g-tube, so we need to keep both of those areas covered. Also, he gets so sweaty, that when he's wearing a regular t-shirt, it rides up in the back and he can get a heat rash.

I got the idea last year to make these onesies, and tried a couple out with my mom to see if we could make them work. They've worked so well! And believe me when I say, they are easy enough for anyone with very little sewing experience to make. I had to call my mom a couple of times while making them, to talk me through threading the machine, and bobbin tension. At least she left the machine all threaded for me this time!

On to the photos...

This is an old onesie, from Children's Place, size 3T. I cut it just below the armpits.


Now we have the bottom to our new onesie.


But...it's too small for the base of his new t-shirt.


So I stretch it out. I just pulled on each side until it was the same width as the new t-shirt.


Next I turn both pieces of the onesie inside out, and line up the seams on the side of the shirts.


And pin it inside out, all the way around. Making sure to put the front of the onesie to the front of the t-shirt...I've had to under them several times because of that mistake!


All pinned up.


Next, I take out the first couple of pins, and place it under the sewing foot.


I tuck the extra fabric out of the way, and I'm left with just the area that is pinned together.


Then sew around the entire shirt, and we get this, inside out still.


And right-side out.


Because I sew the two pieces together inside out, I get a cleaner looking seam.


And the sides match up nicely.


And the finished project on our dude. He's having a really crummy day today, after staying awake all night, so he's not too photogenic today...but you get the idea.


It is pretty big on him...but it's not skin-tight and he'll grow into the new onesies soon enough!



Here's a photo of all the onesies I made this weekend.


This is one of my favorites.
"I'm pretty much one of the best people I know."


Steve found this t-shirt, and it is bigger than the rest of the t-shirts, even though it is the same size. So I had to tuck it a bit on the side where I sewed it.


But in the end, this is the area tucked into shorts or pants, so it isn't usually seen.

I hope this was helpful...and if you've been looking for bigger onesies, give them a try! It's likely you've already got all of the old onesies to use for the bottoms...next you'll get to start shopping in the "big kid" clothes for all the fun t-shirts you've had to pass up because they don't have snaps on the bottom!

Here is an even larger option, made by my friend Raymonde, for her son, Marc-Antony. Great idea Raymonde!

Awesome...or not...

Awesome...Max getting his bath done early tonight.

Not Awesome...there wasn't a lot of warm water for a long bath, and it is never comfortable to bend over and bathe him.

Awesome...Max sitting up quietly after taking his medicine for me to clean the living-room completely before putting him to bed.

Not Awesome...While cleaning I made a mental note of all the things I need to accomplish this week...it's exhausting already.

Awesome...finished cleaning in record time.

Not Awesome...Steve remembered at almost 10:00 that we only had 3 cans of the 5 we need of Max's formula. And because the medical supply company took off Friday, and we could only order on the 1st of the month, we will likely not get it until Tuesday or Wednesday. So, Steve went to the store to get said formula.

Awesome...Max was ready for bed before 9:30 tonight...and so was I.

Not Awesome...Max was sitting quietly while I cleaned because he was filling his diaper to full...thus a mighty mess was to be cleaned before bed.

Awesome...Max was happy to ride on his magic carpet ride to bed...so I was able to get him in there without any help.

Not Awesome...He threw up all over himself, his bedding, and me once he got in bed.

Hoping for only an awesome night...then Steve's up at 4:00 to go to the airport to be in CA for the day. And back tomorrow night. Awesome!!!

Magical Machine...

I'm writing the is post from our new iPad! It's a funky little machine! We were waiting all the live-long day for it to arrive, by way of UPS. I guess they were a little busy, because it took until almost 4:00 to get delivered. Once we got it and started downloading some of the new apps, we got out to get Max some new t-shirts, that I am working on putting together as his modified onesies. I haven't made any of his shirts in a year, and he is really due! Mr. Tummy barely fits into any of his current sized clothes!

I'm not sure what we will end up doing tomorrow. Maybe we'll go to the park. I will definitely be thinking on what the holiday truly means, and why I celebrate it in my heart.



The Disciples Peter and John Running to the Sepulchre on the Morning of the Resurrection c.1898, Musée d'Orsay in Paris. One of the most beautiful paintings I saw on my visit to the Orsay museum.