Head sensitivity

Ryan has been crying every time we wash and dry his hair and occasionally if we brush it or run our fingers through it. This has been happening since he went to the hospital back in December (get your refresher about that here and here).

At first, when we got home from the hospital, I thought it might be due to his scalp being sore or hurt in some way from his EEG leads. Thomas and I were extra gentle to try to not irritate anything that might be hurting him. Now, 2 and a half months later, there is no way that his head could still be sore. We are still being very gentle with him but he continues to cry - and it's a real cry, not a whimper or a whine.

After we get him out of the bath, we've always used the towel to dry his and his brothers's hair. We've never been terribly gentle with this, but we're not overly rough either. Since this head sensitivity issue has begun, trying to dry Ryan's hair has been just as bad. We are now barely touching it with the towel and he's not happy. Cue the tears again.

I mentioned it to Emily, Ryan's OT. She told me that we should try to sing to him while washing his hair. She said that might calm him down some or at least, he can start to realize that once the song is over, the hair washing is done, and essentially giving him some feedback that while he might not like the activity, it is finite and will end soon.

At first the singing wasn't working.

During our discussions, Emily and I have been trying to figure out if it has developed into some sort of sensory aversion or whether he possibly associates it with the traumatic experience that he had in the hospital. Either way, I wish we could find some sort of solution. It really breaks my heart to hear him cry like that, and unfortunately for Ryan, washing hair is not an optional activity.

Have you had an experience like this? Do you have any suggestions for things that may work to help soothe him or help us all get over this hair washing aversion?

 I decided to do this post about 2 weeks or so ago but by the time I got my act together to get my camera ready during bat htime to take some pictures of Ryan, he had sort of started calming down. Over the last 2 weeks or so, he has not been crying every time we wash his hair. He still doesn't like it, mind you, but the aversion seems like it may be tapering off. That's why the hair-washing pictures above don't do the full-out cry-fest justice. These were taken at a time that he was just grumpy about it.

p.s. I love to have my hair washed, brushed, played with, etc. How ironic that it's basically torture for Ryan? 

Happy Go Lucky

St. Patty's Day has rolled around once again and we were prepared with green attire to avoid the ol' pinches!

My little guys are the cutest things and make me the luckiest Mama!

William, Ryan and Stokes

The boys and their mama

Stokes wanted to be cool and put on my shades

The boys with Lala in the backyard

We even had green water in our bath tonight in honor of the Irish!

Happy St. Patrick's Day, everyone!!!

Want some outtakes? I know you do (well, really, I just want to post them so I can re-read this next year and laugh!!).

Ryan lifting his head up

Stokes won't look at the camera and William won't put
his arms down

William rubbing his eye

William pointing to the moon (and yes, it actually was out
at 4:30 PM...weird).

And Stokes is off!

Again, pointing to the moon.

"I got it, buddy. That's cool, Now sit
still, put your hand down and smile for
your Mama."

Contest:
Try to come up with a creative caption for this
picture - post it in the comments!!
Winner will get a very cool prize (TBD!) It might be
something really amazing, like a phone
call or text from your favorite triplets! ;)

Here's a year by year comparison. By the way, I tried to do a pic stitch and it was a fail. So here's a good old fashioned comparison in 3 different pictures for 3 different years!

2014 with Mama

2015 with Mama

2016 with Mama

3 Leaf Clover 2014

3 Leaf Clover 2015

3 Leaf Clover 2016

Why, Blogger site, did you make my 2016 horizontal picture a vertical? No one will ever know.
Previous posts: St. Patrick's Day in 2014 and 2015.

AFOs

Ryan just got his newest addition to his arsenal of pediatric helpers: his brand new AFOs!

You may remember last summer we got him some SMOs. He eventually grew out of those and we recently went to the orthotics office to get them resized and reshaped for him. We did a joint PT/orthotics appointment and while we were there, our PT, Ashley, mentioned that she thought he could use some AFOs.  So his SMOs got resized and we ordered the AFOs.

This is a little off topic, but the orthotics office has this huge bear in the room to entertain the kids during the appointments, and Ryan was intrigued. He crawled right over to it and was playing with it. It was so cute!

Ryan with Ashley and the gigantic bear

Checking out his bear friend

Decided he likes him "beary" much ;)

AFO stands for ankle-foot orthosis. Here's an overview of what it does and what it's for:
This device is used to control instabilities in the lower limb by maintaining proper alignment and controlling motion. A plastic AFO is a custom fabricated, molded plastic device that encloses the back of the calf and bottom of the foot. The AFO functions by maintaining the affected joints in proper alignment to overcome weakness or muscle imbalance.
(That is not my synopsis - I copied and pasted from scheckandsiress.com).

Ryan's new AFOs

We're slowly building up the amount of time that Ryan can wear them during the day. His therapist Ashley thinks these will help him with additional stability to help him with standing and eventually walking. Ashley said it will probably take some time for him to get used to them and he may resist crawling, transitioning, standing, etc in them until he's used to them. So far though, he's been taking it like a champ and when he has worn them, he's been doing everything he would typically do.

My hero

I have noticed that there are some red places around his ankles, and that could be an indication that we need to make adjustments to his AFOs. We never want them to be uncomfortable or to be rubbing his skin. I have a follow up appointment with orthotics scheduled to get it looked at so we can make adjustments as needed. We'll be following a light wearing schedule until that appointment so that we don't make any sore areas or places where it rubs worse.

Bless his heart. He doesn't spend much time on his feet. We've been instructed to make sure he stands while holding on to something as much as possible, with his braces on, to bear weight. He can stand up while holding onto the coffee table or something similar. You can totally tell that he is falling behind because his feet are definitely smaller than his brothers. Bearing weight helps to build muscle as well as make bones stronger, so the less those muscles and bones are used, the smaller they are. Hopefully these AFOs will help him develop in some of the areas where he struggles.
*Note: we normally would have shoes on over his AFOs but this was a specifically a photo opp for this blog and I wanted the AFOs to be visible. The bottom of the AFOs are smooth plastic and would be too slippery for him to wear without shoes on a hardwood floor, for example.

Barber shop

We played "barber shop" at our house over the weekend. The boys were in desperate need of a hair cut and Thomas just comes out of the blue with, "Hey, I think I could cut their hair!"

I was too nervous to try myself because I didn't want to butcher their sweet locks, and have had exactly ZERO practice sessions of cutting hair. For goodness sake, I never even cut my Barbie's hair! Thomas was fearless though!

Out to the porch we went. I took some befores, durings and afters.

First up was Ryan. His mop was way overdue for a trim! He has such pretty hair - it's the most gorgeous color. It's mostly straight but will curl just a little every now and then.

Getting situated with Dada

What a cutie!

Handsome little thing

Having fun in the sunshine!

Snip snip

AFTER!

Then it was William's turn. William's hair is the most like his Dada's. It's super thick and curly/wavy. It grows very fast, too.

Before

Snip snip

AFTER - and it was very sunny!

So handsome!!

We had to go ahead and cut Stokes's hair, too, since his brothers got a trim. Stokes needed a haircut the least and his hair is mostly like mine - thin and grows slowly, but fortunately for him, it also has a little curl to it, whereas mine does not. Our experience so far is that he only needs to get his hair cut every other time his brothers go.

Before

Snip snip

AFTER - and doesn't he look so serious?!

Granted, their haircuts are not going to win any awards and I don't think anyone would look at them and say, "Man, what a great haircut!", but the pre-mullets are gone, and we avoided the Lloyd Christmas look. Well done, Thomas, well done.

Maybe we'll get a professional hair cut every other time, just to make sure we aren't going too far off the rails!