Monday, February 19, 2018

Valentine's Day 2018

This year's Valentine's Day was one of my most favorites! It was just such a great day all around and filled with so much love in our home.*

The day started off with a special VDay breakast - heart shaped pancakes (totally free style so they were "interesting" hearts) and candlelight. I love a candlelit breakfast and got the idea from a coworker of mine that did this with her family every single morning. Like every one - school days, weekends, holidays - all of them. I envy her on that!



We got them dressed and had them all matching in their adorable, super soft Loggerhead Apparel shirts and shot a few quick pictures. Didn't have time to get the perfect picture. That's my life.

Here are several....




Then we took the boys to school where they had a good day and exchanged Valentine's with their classmates.

That evening we had a delicious steak dinner that Thomas grilled us from The New York Butcher Shoppe (a fave!) and had a glow stick dance party. We turned off the lights, activated the glow sticks, turned on music and danced. It was so fun! The boys loved it and it made my night. I think I smell a tradition coming on. We even took the glow sticks up to the bath and turned off the bathroom lights to have a glow bath - so cool and so fun!

Homemade chocolate covered strawberries







Here's a little video capturing my sweet boys and their cute voices and funny laughs. I will treasure this video always. 



Here's last year's Valentine's Day post, which contains links of previous year's posts as well.

*I'm not even going to go there with the school shooting. I can't. It breaks my heart. 

Random fun

These didn't each need a separate blog post, so I'm going to combine several fun events into one post. The beginning of February created opportunities for good times for us - time with friends, dressing up and play dates.

On the third of Feb., we had a play date with some of our couple best friends (parents) and the boys's future wives, Caroline and Ava Lane. These kids had a great time playing together and they all get along. The adults could relax and let the kids play together in the playroom so that we could have some adult conversation with relatively few interruptions. What a win-win! I love doing life with these families.

By the way, did you know that getting triplets to look and smile for a picture is very, very difficult? Yes, I know that I've mentioned it at least 100 times on this blog. What's even harder? Getting FIVE kids to all look and smile. LOL

Ava Lane, Stokes, Ryan, Caroline, William

#compoundkids (long story!)

Ryan had real life cowboys from the PBR (Professional Bull Riding) visit his school while they were in town for a show. Due to the special visit, it was "dress like a cowboy day" at his school and we happily obliged. I think we had like 2 days notice so I was really glad that we already had stuff on hand that he could wear!

My handsome cowboy
Ryan with his best buddy, Rhett

Ryan and Rhett with the cowboys!

There are some twins at the boys's school - Marcos and Mateo (the boys call him Matato...like potato LOL!!!) - that are so adorable and we just love them. One day they were leaving at the same time that we were leaving from school and they hopped right in the car with us. These boys all had a little impromptu car play date and they were so cute and having so much fun, we just went with it for a while. They were climbing all over the place - to the front, to the back, getting buckled and unbuckled in multiple car seats - having a ball! Mateo actually kept saying that they were going to close the doors and that Carrie (their nanny) and I couldn't come in. Hilarious. They told me that I needed to take pictures of them playing. It actually took a little bribery to get them out when it was really time to leave! Haha! Note: the car was parked and keys were in my possession during this play time. No children or minivans were harmed in the making of this fun. ;)




Good times with friends is always the great choice for ways to spend your time. 

Saturday, February 17, 2018

Chuck E. Cheese

The boys got to experience Chuck E. Cheese for the first time at the end of January. They were invited to their friend Davis's birthday party there and let me tell you, it was a HIT. I was having deja vu being there and was remembering when it was Showbiz Pizza when I was young and there were motorized furry characters on stage that did a little performance and played instruments (actually quite creepy when I am thinking back)! Anyway, the place has been updated and was a great time for all the kids. They loved using their cards to "pay" for games and rides. I think my big kid (Thomas) had fun, too! We appreciated Davis inviting the boys to his party!

showing them how to spray water on the target

Race cars!

Ryan raced, too

Go Ry!

This is Stokes's girlfriend, Emerson. She's so cute!

Birthday time!

Hoops

Such a fun game/ride

Ryan loved it!

Stokes was a natural on the horse

giddyup

Ryan on another race car

Friday, February 16, 2018

Another SNOW!

We got snow twice this winter! See my other post about December's snowfall here. This time, however, the boys had their snow bibs, snow gloves and their warm winter jacket! So very prepared. Ryan was a little under the weather and stayed inside, but Stokes and William had a (snow)ball of a time! Unfortunately, I was traveling for work (again! I think I missed it last year, too...) but got some fun pictures from Thomas!

 




Thursday, February 15, 2018

Nap time

How cute is this? We're pretty much past the nap stage during weekends now, with the exception of Stokie, who will sometimes put himself down for a nap if he's tired. These 3 guys were just snoozing away. I loved it!


I almost forgot...

This is out of order, because I forgot to post about it, but remembered as I was scrolling through pictures on my phone the other day. William and I went to a Clemson basketball game in between Christmas and New Year's! We were able to use the Owings' tickets because they went to New Orleans for the Sugar Bowl, and they gave me 4 so I invited Brooke and Bennett to come with us. Craig, Bo and Baker came as well, but sat in other seats. We had a good time and William loved watching the Tigers play basketball! I think Stokes and Ryan would like it too so maybe once Thomas gets over his Clemson basketball boycott, we can go as a family to a game (next season!). 

He's a big fan

In awe...

Great seats, courtesy of the Owings!

Brooke with Bennett and William


Tigers won!

Tuesday, February 6, 2018

Overnight EEG

At some point last year, I was noticing some interesting changes with Ryan. I wouldn't necessarily call them "regressions", however, these changes were a bit concerning. He was starting to fall over while sitting on the ground. It wasn't really a sharp or dramatic fall; more like a slow motion ease to one side, but without catching himself with his arm. Sitting independently, without falling, was a skill that he had mastered a long time ago, so I wasn't sure where the balance challenges were coming from. I would also notice him leaning in his high chair on one side. Here are some examples of what I was seeing.
He wasn't always leaning to one particular side,
it was both ways.
He slowly tilted over to the side and was
resting on his elbow.

I reached out to his therapists to see if they have any ideas or if they had noticed it. They had. They advised me to discuss it with his neurologist. We, coincidentally, had an appointment coming up with his neuro so the timing worked in our favor. At the appointment, we discussed what we had noticed. I must also mention that around the same time, Ryan had been sick - minor things - but had been on some antibiotics, so we weren't sure if that could have possibly been a contributing factor, or maybe if something was going on with his ears. Ryan's neuro wanted us to do lab work to see test and see how the meds were doing and then he mentioned possibly doing an overnight EEG, just to confirm whether there was something going on in his brain to which we weren't privy. 

The blood work confirmed that the meds were at good levels and there were no concerns there, so we moved forward to schedule the EEG, which meant to a trip to the hospital to stay overnight. We got scheduled for Jan. 3rd and Ryan and I checked in at 8:30 AM. They took us up to the room and then not long after that, he got his electrodes hooked up to his head. 

Taking everything in stride!

Such a sweet boy


Once he was all ready and capped up, we went back to our room and essentially just hung out all day. We spoke some to the nurse when she would come by, and I had my work laptop there so I was emailing and working most of the day while Ryan napped and watched tv. In the meantime, the EEG was capturing all of his brain waves and its activity and there were people there somewhere monitoring what it was showing.



We slept there overnight, and although I didn't notice any specific "seizure-like" activity, I did wake up around 1 AM to sounds of him moving around and making some very quiet noises. I noted that to the nurse in the morning and they were able to go back to the record of his brain waves around 1 AM to rule out a seizure, which they were able to do. They did see on his EEG that he awoke, briefly, but did not have a seizure. That was a relief!


Ryan's neurologist was the doctor at the hospital that week (intentional scheduling on both of our parts) and he came during rounds in the morning to talk to me. He said that he didn't see any seizure activity, and nothing really out of the ordinary for Ryan. Based on some of the balance concerns that we had, he anticipated that there may be some deterioration to Ryan's brain wave pattern during the night while he was sleeping, which is why the EEG was scheduled. He wanted to see what was happening to Ryan's brain while he was sleeping, especially, since we also aren't typically awake to make note of anything odd or unusual. The verdict is that there wasn't deterioration during sleeping hours, which was also a big relief. Towards the end of our discussion, he gave Ryan the green light to get unhooked from the EEG and start the discharge process.


EEG is off!
Time to wash the hair!

I should note, however, that Ryan's brain waves are not normal, and the patterns they make are not normal. That's just how it is for him. Abnormal patterns do not indicate seizures, but they do note that his brain is not functioning normally, as we know. One interesting thing that came out of his discussion, apart from the confirmation of no seizure or deterioration during sleep, was that Dr. Taft feels like the patterns he's seeing right now indicate that Ryan may eventually be diagnosed with Lennox-Gastaut Syndrome. I have done some reading about it, and it's not great news, to be blunt. That being said, this is only a prediction of what could potentially happen in the future, not a diagnosis! I don't want to go down a rabbit hole of reading and research right now since we don't know if Ryan will end up with LGS. 

Your ongoing prayers are still requested for my angel boy. No one has a crystal ball...so we don't have the answers about his future that I long for. We can and will deal with anything that comes our way, but want the very best life for Ryan that is possible.