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. 

Starting the new year on a good note

New Year's Eve was very uneventful this year! I honestly was not even awake at midnight...if that says anything. I had a big day planned for the 1st of January and didn't want to be too tired. I met the Nanas and Kaitlyn in Atlanta and we went to visit Aunt Anne for a few hours. After that, we drove all the way back to Greenville and the Nanas and Kaitlyn spent the night with us. The Nanas actually offered to babysit so that Thomas and I could go out, which worked out perfectly since Clemson was playing in the Sugar Bowl that night. Thomas and I went to Steph and Clark's house to watch the first half of the game and came home at halftime to torture ourselves with the second half as well. Suffice it to say that it wasn't our best game and we lost...to Alabama. Anyway, it was awesome to have some sitters so that we could go watch with some friends!!

The boys adore Kaitlyn and tell me often that she's their best friend. It's so sweet! She's wonderful with them and loves playing with them and helping them. She's a great babysitter in the making because she's just so good with kids!

I loved that we got to start out the new year with family that we typically only see a few times per year. I hope that this is a good omen for 2018 and more family time for all!

Kaitlyn kissing Ryan

A potential career

I know it's early to begin thinking about aptitude or potential careers for the boys, but one potential career path has to come light recently.

I am totally mortified and upset by this, but yesterday, Stokes CUT his teacher's hair at preschool. With actual scissors. Yes, you read that right. I am at a loss.

Normally if something crazy happens at school, we will get a note on the school app or when I go in to pick them up, a teacher or an administrator will talk to me about the event/action/whatever the case may be. Yesterday, none of that happened. I went to pick up the boys after having worked a little bit late, and they were gathered watching a movie in a room that is not their regular room and their teachers had left for the day. The sweet lady at the front desk, Darlene, didn't mention anything, so I go pick them up, as I would any other day, noted that both Stokes and William were good on their behavior chart for the day, and we came home. Later on, during dinner, Stokes casually mentioned that he cut Miss Bailey's hair. I was not sure what to think. I asked him if he was telling a tale and he said he wasn't. He said that all the teachers got really upset with him and he had to sit on a blue chair for a while. He also said that the director of the school and another administrator talked to him. I asked William to confirm whether this was true or not and he confirmed what Stokes was saying. I honestly wasn't sure if this was an elaborate story...simply because there was no indication of anything like that when I picked him up. I just told him that we would have to find out in the morning what had happened. Overnight I kept thinking about it and worrying about the aftermath, if it was indeed true.

This morning, I woke up still thinking about it. While I was in the shower, a thought came to me. I suddenly remembered something that was said when I picked the boys up. The teacher that was watching the kids in the room with the movie casually said, "looks like he's trying out a new career". I was puzzled. I had just walked in to them watching a movie and had NO IDEA what she was talking about. In the chaos that is picking up the boys, I just kind of responded, "What? A professional movie watcher?" I literally did not have a clue what she meant and meanwhile, I was trying to encourage the boys to get ready to go home, get jackets on, stop watching the movie and start walking, etc. The teacher didn't really respond to my puzzled question or correct me, so I brushed it off and forgot about it. But in hindsight, after Stokes told me what he'd done, and I'd had time to mull it over, this little nugget of a conversation came back to me. With a pit in my stomach, I went to find Thomas and told him that I thought Stokes was probably telling the truth and also about what the teacher had said the night before.

On the way to school, I was so nervous. I was concerned that his teacher, who has pretty long hair, would be there with a very short haircut, that was necessary after her student haircut. I was trying to think out and plan what I would say, if it was true. When we got there, she looked normal and was smiling and laughing and joking...but as it turns out, it was true. All of my emotions came out that had been bottled up since last night's dinner, and I got teary while talking to her, talking to the director and talking to Darlene at the front. Miss Bailey is totally fine, which is a huge relief, and she commented that she already had a hair appointment scheduled for Monday anyway, and that she and her hair dresser have had a laugh about it already. The school director brushed it off as well and I got a big hug and a pep talk from Darlene. I'm planning to pay for Miss Bailey's haircut, and although she wouldn't tell me where she goes, I have Darlene looking in to it for me so that we can try to make it right.

The background is that all the kids play hairdresser with the teachers every day. That is not unusual. They will "pretend" cut, curl and brush their hair on a regular basis. This was all happening, but Stokes went and got some real scissors and actually cut the hair. Apparently, he was shocked and wasn't sure what to think when reality came crashing down that it was permanent. It was probably an inch or so of hair and wasn't immediately noticeable when talking to Miss Bailey this morning. Miss Bailey even had her hair down and said that she would be wearing it in a ponytail if it was bad. I also found out that the school has some sort of scissors that only cut paper, nothing else, and the kids are used to those, but these (unfortunately) weren't that type. All real scissors are going to be in locked drawers from now on, thanks to this incident. Everyone reassured me that it was a mistake, and not a big deal, and tried to make me feel better. They said that I will look back on this and laugh....which I'm sure I will...but right now I'm still upset. It could have been so much worse and no one would be laughing if he had cut it really short.

Thank goodness that it really wasn't worse than it was and that everyone, Miss Bailey especially, handled it with such grace. I will definitely feel better once we do something nice for her, and we're going to have some stern discussions about scissors and hair at our house.

picture from today

I had to blog about it because I want to look back at this years from now, or maybe when Stokes is a hairdresser to the celebs, to remember it and to laugh.

Christmas 2017

*It feels so crazy writing about Christmas, now that we're into February, but I'm insisting upon getting caught up to real time. And also, I may be a little hazy on details since this all happened over a month ago. Onward...

As I mentioned in the Tazewell post, we came home from Virginia on Sunday afternoon so that we could attend a Christmas Eve service at our church. Well, we got home in just enough time to literally throw all the Christmas gifts and our luggage from the weekend in the house, run around like mad people getting dressed, then rush out the door to get to church. Christmas Eve services are always very well attended and we wanted to get there in plenty of time to get a good seat...which didn't happen...but luckily MaSha got there early and saved room for us!

The service was beautiful and we all especially loved the music. The boys did pretty well staying quiet, but there may have been some lying down on the floor, walking in the aisle and sleeping on a grown up shoulder, but all in all, they were good. They're not used to being in church because they go to Sunday school and children's church so I was satisfied with their behavior, knowing that it's not an everyday occasion for them to know exactly how to act.

After church we got home and took a few family pictures.

Love my sweet family!

Boys and MaSha

The stinkers

MaSha came home so she could spend the night and be there on Christmas morning with us. She helped me with our Christmas Eve dinner. Then we made some egg-free sugar cookies and decorated them so we could put a few out for Santa...and eat a few....and save a few more for potty rewards (yes, that is STILL happening)!

Soon after that, it was bedtime! Our house was a literal wreck from us having such a quick turnaround between getting home and going to church and then immediately coming home and eating dinner and making cookies - there was stuff everywhere from our Tazewell trip. We needed a little downtime to clean up in anticipation of a visit from our buddy, Santa! 

Before the made the boys go to sleep, we read "'Twas the Night Before Christmas" and even heard Santa's sleigh bells outside! It was amazing. We discussed with the boys that Santa doesn't come until all the kids are asleep and they took our advice and went to bed. They didn't want to ruin the opportunity for Santa to come and leave them some gifts!

The next morning, we were so grateful and excited to see that Santa came!!!!

When the boys woke up, we made them wait
on the stairs so that we could all go see together!

William got a Lego football field and football players!
He was talking about it non-stop leading up to Christmas!

Santa brought some great stuff! He got them all snow bibs for next time we get snow/ice, Ryan got a driving/car toy, Stokes got some awesome die cast cars of Lightning McQueen and Jackson Storm (from Cars 3) and William got his Lego football toys plus lots of great stuff in the stockings. Yay for Santa!

After the Santa presents were opened and played with a little, we took a break to do breakfast. 

Stokes helped MaSha made egg-free
biscuits

After a yummy and big breakfast, we went to the tree to open more presents!

New bikes from Abby!

Ryan got one too!
It's a special bike just for him. More on that
in a future post!

Seriously?!?! How cute are they?!?!

Some downtime after all the excitement!

FaceTiming with cousins

Later that afternoon, we had to take their new bikes for a spin! Between MaSha, Thomas and myself, we rotated helping each of them figure out their new wheels.

The rest of the day was very easy-going. We watched some new movies they got as gifts and kept playing with the new toys. It was just relaxing and fun! It was such a great Christmas and seeing it through a child's eyes is unlike any other experience! There is joy and magic in everything. This year we all really, really enjoyed everything and we were so glad that MaSha was there to celebrate the day and spend time with us!