Oh no - it happened

This post was started about two months ago, and I hadn't gotten around to finishing it yet. So this is no longer "news" at our house, but definitely still blog worthy!

I've been dreading this. I knew it was coming.  The clues were right before me, but I kept brushing them off. Willing them to go away and come back...well...never.

Stokes climbed out of his crib. AHHHHHHHHH!

"What's up?!?"

Strong little fella

And guess what - William's probably not far behind. He is starting to put that foot over the edge. He hasn't gotten much farther than that, but good grief, stop right there.

The struggle is real.

What is our solution, you might ask. Well, the truth is, we don't have one. I don't know whether we should get toddler beds for them to use for a little while before moving up to real beds, or just move on up to real beds. Things I'm pondering -

• Even though toddler beds are not expensive, does it make sense to buy them when the boys won't use them very long? And will they like them?
• If we got real beds, will they all fit in the same room? Should we give up our guest room and split the boys up? Or keep them all in the same room and squeeze beds in? Should we go with bunk beds, with the intention to only use the bottom bunk for a while? Should we do bunks with a trundle, or bunks with another regular bed?
• And it's not just the beds we have to buy - potentially mattresses, sheets, comforters, etc. This could mean a whole new look for their bedroom. I'm not ready to take on all these changes!!! These crazy things seriously keep me up at night.

I've also heard horror stories about the transition from crib to bed.

So. Not. Ready. Time, please stop.

I know that seems a bit dramatic, but this is how my mind works. I turn things over in my head and get overwhelmed. I need to take a deep breath.

For the time being, they're staying in cribs, until we make a decision or when the day comes that they're just too big to be in cribs anymore. We've switched the cribs around so that Stokes has the easiest one to climb out of. I mean, we know he's going to do it, and we don't want him to get hurt, so we may as well make it a little easier on him (not to mention that we heard a thud and some crying when he still had the higher crib - no likey). William and Ryan are staying put for now. We have to lock their bedroom door so that our adventurer can't leave the room at night and at naptime.

In the mornings, before I come in, I can hear Stokes get out of his bed and play with toys, try to open the door, etc. He will eventually climb in William's crib and this is the scene I walk into each morning:

"Hey Mama!"

"I'm coming to see youuuuuuu"

"Bye, William!"

Do you have any suggestions for the next phase? Any recommendations for what we should decide to do? Leave me a comment if you have any good ideas for us! :)

Cousin time and a BIG WIN!

My SIL, Ashley, and her girls, Taylor and Anna, came to spend the weekend in Greenville last weekend. They stayed over at MaSha's house and we luckily got to have lots of quality time with these three pretty girls. 

Friday evening of last week, our family went over to MaSha's to visit and hang out with all the girls. We had a great time and the boys fell asleep on the way home. 

Stokes, Ashley, William and Taylor

Thomas and Ryan

Taylor and Ryan

William and Aunt Ashley

Stokes and MaSha

Lots of fun playing and laughing

Bubbles!!!

On Saturday, we all met up for lunch at Brixx, then came back to our house for the afternoon. The Clemson game came on at 3:30 so we had tailgate food and fun times. Taylor and Anna are THE best. They played with the boys all afternoon and kept them totally entertained. The girls were so patient and sweet and the little guys completely love them! The adults got to watch the game almost undisturbed while all the kids played together. It was fabulous. I think Taylor and Anna need to move in with us. ;)

MaSha and Ryan

Stokes and William

Ryan and Aunt Ashley

William, Anna, Taylor and Stokes

Tay Tay and Stokie

William and Anna

Lots of fun playing

Taylor and Stokes

Everybody playing and watching the game

So much orange...what a beautiful site! haha

The boys were having fun putting this bucket on their
head and falling down. Such clowns!

William, Stokes & the "hat"

Woot woot! Look at that score! 23 - 13 Clemson

William and Anna celebrating the W!

SO EXCITED for the Tigers!!!
William, Thomas, Stokes, me and Ryan

Us and the girls! Go tigers!

What a beautiful scene!

Ryan and Mama - happy campers

Ashley and the girls are always such a total joy to have around. The boys look up to their sweet cousins and family time is at the top of our list of most important things. Thanks to Ashley, Taylor and Anna for coming to visit and for being such awesome visitors and playmates. We love you all so much!

I also need to note that the Tigers are 9-0 and currently ranked #1 in the country. NUMBER ONE. Yes, you read that correctly. This is such a special season and although we have several more weeks before we find out if we get to go to the Playoffs, this is incredible! We just have to keep on winning. We haven't been #1 in my lifetime. It feels great and I'm eating it up. This Saturday, we beat Florida State and locked up the Atlantic division in the ACC. We are going to the ACC Championship Game in Charlotte to play against the winner of the Coastal Division. This is all too much info for most of you probably, but we are just so excited! Each Saturday morning when I go in to the boy's room to get them up for the day, I play Tiger Rag (the Clemson fight song) on my phone and they love it. They will ask me to play it "Again! Again!", which I do. It's become a fun little tradition this season. And they look great in orange, which they wear on Fridays (solid orange day) and of course on Saturdays when we have a game! GO TIGERS!!!!

Seizure

Ryan had a seizure yesterday. It was a bad day. 

I went in to get the boys around 7:30 AM like I usually do. Ryan was still sleeping, which is rare, but not totally unheard of. I went ahead and got Stokes and William up and changed to let Ryan sleep just a little bit longer, in case he was still tired. I did think it was a little unusual that he wasn't stirring, even though we were making plenty of noise. 

After I was done with Stokes and William, I went to Ryan's crib to wake him up and his legs were shaking a little. I chalked it up to stretching and muscle contractions when just waking up, but thought that it was a little weird. Then when he opened his eyes, he wasn't really making eye contact. I picked him up and took him to the changing table and he still wasn't tracking or looking at me. He only had his eyes looking to the side, as if he was totally focused on something. He didn't do any more shaking, but seemed really stiff. I just kept remembering what Dr. Taft had told us - we may not know exactly how the seizure will present, but it will make the hairs on the back of your neck stand up. Ryan's behaviors and positioning were just NOT normal and I could tell something was wrong. Luckily, Thomas hadn't left for work yet when this was happening so I called him in to see Ryan. He agreed that something was going wrong and we both agreed that I would call Neurology and talk to them and keep him informed. He left shortly after that for work.

I got the boys downstairs and fed Stokes and William breakfast. I read somewhere that you should not put any food or anything into the mouth of someone having a seizure, so I just held Ryan. I didn't know whether he was still having the seizure, or if that was even what it was in the first place. I wasn't sure if I should go to the ER. I was feeling totally lost. He fell back asleep almost immediately when I was holding him. Once Layla got there around 8:30, I immediately started crying telling her what we had seen from him and my concerns. At that point, I was still waiting on a call back from Neurology so I didn't totally know what to do. I got a call from Thomas and he said he was just too worried to be at the office and was getting his laptop and coming back home to work from the house to keep an eye on Ryan. 

Of all days, I had a huge meeting downtown. Executives from my company and my vendor's company had flown in for this meeting and I felt like I needed to be there - and was feeling torn. I was actually supposed to be downtown by 9:30 to host a few people for coffee and walk around downtown a little before the meeting started at 11, but I had to let them know I couldn't make it before 11. 

Thomas came back home and we took Ryan to our room and just held him and let him sleep. When the nurse from Neurology called back (we had called again in the meantime, trying to get some answers), she asked me what was going on, said that Dr. Taft would be calling us, and said we didn't need to take him to the ER and that everything was OK. Dr. Taft called about 15 minutes later and I once again described our morning to him. He agreed that it was probably a seizure and said it is very common for kids to sleep after the seizure and just to let him rest. He said he couldn't be sure that I had seen some of the actual seizure or whether I only saw the aftermath. He decided to up up Ryan's medicine dosage to try to prevent any future seizures. He told me to call him back if I saw any other seizure activity. We will keep our regularly scheduled check up appointment with him but did not have to schedule another appointment to come in sooner than that. 

We had been warned that due to Ryan's Pachygyria, he was most likely going to have seizures. We knew it was probably coming at some point. Just knowing that did not make the blow any easier to take. Thomas and I were both so worried about him all day. 

A little while after speaking with Dr. Taft, Ryan woke up and was focusing on me. He wasn't quite his usual happy self, but seemed to be more normal. 

I ended up going to my meeting, and felt OK about it since Thomas was going to be there with him all day. I told Thomas to let me know if anything else happened and told a few people in the meeting about our morning so that they could cover for me if I needed to leave suddenly. They were very understanding and encouraged me to go ahead and leave, but I felt obligated to stay and I knew there wasn't much I could do for Ryan at home. I knew Thomas was keeping a good eye on him and taking excellent care of him. MaSha also ended up coming over to help out and just provide an extra set of hands and emotional support. 

Thomas provided me with text updates throughout the day so I could have some peace of mind. 

Ryan slept a lot, and when he was awake he was a little grumpy.

Thomas holding Ryan right before I left for my meeting

Awake but not feeling totally himself

Poor little guy was pitiful - very sleepy and not feeling great.

Around 10:45 AM

I got a text in the afternoon that he had a fever (101.9) so Thomas called the pediatrician and they let Thomas give him some Tylenol to help.

sleeping peacefully

Thomas ended up having to give him a suppository in the afternoon and it didn't take long for him to have 2 dirty diapers. He must have felt a lot better after that because this is the picture I got!

Finally feeling a little better

Thomas said Ryan pretty much only ate apple sauce and bananas yesterday - would hardly eat any dinner or drink his water or milk. I have no idea what it actually feels like, but judging on Ryan's demeanor yesterday, I would equate the aftermath of a seizure to probably feeling hung over.

It's interesting that he had a fever yesterday and was a bit constipated. Each of those on their own can cause seizures. We try to limit his constipation by giving him stool softener daily and sometimes probiotics, as well as prunes and fiber-rich foods, when we notice he hasn't gone in a while. Dr. Taft warned us about that a while ago, and every so often it will be a few days in between movements for Ryan. I wonder if it was the combination of constipation plus the fever that caused his seizure. We may never know the answer, but can at least do what we need to do to keep his bowels moving.

Today is Friday and he seems to be completely back to normal today. He has his PT appointment this morning and it did not appear that he had regressed at all from a PT standpoint. I was really worried about this since he's been making such great progress lately, and we couldn't tell yesterday since he was so tired and not feeling great.

I hope and pray that this new medicine regiment will prevent any more seizures. If another happens, we will try a different medicine dosage, brand or combination or whatever else our Neurologist suggests to try to treat him the best way possible.

I worry about my sweet Ryan all the time, but yesterday was really scary. This was his first real seizure since we got his infantile spasms under control over a year ago.

Early Intervention assessments and graduates

Our Early Interventionist, April, comes by and sees each of my boys every Tuesday afternoon. She's been our EI since very early on in their lives, post-NICU discharge. She helps to coordinate all the therapists and can make recommendations for therapies or needs that the boys may have. Every 6 months, April will conduct an assessment, where she asks me questions about what they can/can't do and together we decide how to score each question based on what she's seen them do and what I've seen them do. Think of questions like "can he stack 5 blocks?" or "does he say at least 30 words?" - those are not the actual questions from the assessment, but are along the same lines. After she grades the assessment, she does a review with me where we walk through the results of the assessment, as well as the goals that we've laid out for each of the boys. We then decide if they've met the goals or not and any other goals we want to add.

Well, April conducted the 6 month assessment a few weeks ago and when she graded the results, we discovered that we have 2 EI graduates on our hands. April came by on Friday to do the assessment review with me with the results and gave me the update that Stokes and William have both "graduated" from Early Intervention. They both used to show significant delays in several areas of the assessment, but now are basically caught up, or at least caught up enough that EI is not longer warranted.

April with Stokes, Ryan and William

In the review, we discussed the goals that we had set for each of the little guys, as well as how they're tracking towards their goals.

Stokes -

• Increasing attention span and doing an activity for at least 5 minutes - still working on this ;)
• Share toys with brothers - still working but definitely getting better
• Follow directions without having a tantrum - has met this goal
• Identify people, places and objects - has met this goal
• Name people and objects - has met this goal
• Use words to tell us what he wants instead of biting - lots of improvement but still working

Ryan - 

• Getting on hands and knees to crawl - still (aggressively) working on this
• Playing with toys by pushing buttons - seeing some progress, but still working
• Increasing hand/eye coordination - still working on this
• Reaching for food to feed himself - seeing some progress, but still working
• Catching himself from falling over while sitting - still working on this
• Imitating and using spontaneous sounds - still working on this
• Pulling up - still working on this
• Getting into sitting position by himself - has met this goal
• Moving forward across the floor - has met this goal
• Tolerating a variety of solid foods - has met this goal
• Rolling from back to tummy and tummy to back - has met this goal

William

• Transitioning to speaking multiple words - has met this goal
• Stacking blocks or doing puzzles - has met this goal
• Pointing and naming pictures in books - has met this goal
• Using at least one word to tell us what he wants - has met this goal
• Stepping over toys without falling - has met this goal
• Walking up stairs - has met this goal
• Kicking a ball - has met this goal

Notice a trend with William's goals? He accomplished each and every single one! April said she has never had a kid that met each and every goal on a review. Normally there's at least one or two that they're still working on. William is doing awesome! 

Although he's not going to get EI any longer, Stokes will be able to continue with Speech Therapy, but we just won't have April as his EI to help coordinate. We will now work directly with BabyNet for his speech therapy needs and can keep his current Speech Therapist (she's also named April!).

Ryan still shows some significant delays and will continue receiving EI services. That means that we'll still get to see April once a week and although she won't be officially seeing Stokes and William any longer, we'll let them come see her and play with her at the beginning or end of Ryan's appointments.

April was joking around about wishing she had some sort of graduation certificate and we said we needed caps and gowns! It's crazy that April has been working with us for almost 2 years and all of a sudden, she no longer has Stokes and William. I made sure to get a few pictures of her with all 3 of them on her last official appointment as the EI for all. We love April!

April and the boys

It's definitely a good thing that Stokes and William have graduated, because that means that they're really catching up and getting on the same ground as their peers of the same age, but a small part of me is a little sad. It may be because they are really "growing up", which is hard to accept as a parent. It's also nice having a professional set of eyes on them each week to help me keep up with what's going on and keeping track of whether they need any additional services. At least she'll still be around and I'll be able to ask her questions, even if they don't apply to Ryan specifically!

Cheers to my EI graduates! Here's what their most recent assessment grades looked like!

William's assessment results

Stokes's assessment results

Also, did you know that November is Prematurity Awareness Month? How ironic that two of my boys graduated from EI and are overcoming the effects of prematurity in the month of November! The March of Dimes is trying to focus the nation's attention on premature births this month to create awareness and to decrease and prevent prematurity. Purple is the March of Dimes color and they encourage everyone to wear purple this month. We love purple (Clemson's other color ha!) South Carolina's current preterm birth rate is 10.9% - that's fairly high! That means one out of every 10 babies born in SC is a preemie. My prayers go out to the babies, families and healthcare workers that are dealing with prematurity. 

Expo b-ball game

The Clemson basketball team is going to be playing in Greenville this season while the basketball arena gets renovated. That's a win for us! We may be able to go to a few games!

To help promote their season in Greenville, the men's basketball team has been creating some buzz and doing some promotional stuff around town. Remember when they came to the Saturday market? Anyway, I got an email last week about an expo game they were having on Thursday. The best part? The game was FREE! They had fun stuff for kids set up outside the arena from 5 - 7 and the game started at 7. I hadn't given it much thought, but as the day passed on Thursday, I got a wild hair and decided that I wanted to go. It took a little convincing, but Thomas agreed, too! I mean, this is rare of us to just decide last minute to go do something. We hardly ever do anything spur-of-the-moment since having the boys - but we're getting better.

MaSha typically watches the boys for us on Thursday nights so we can go to a bible study, but the bible study group was going to a JV football game and we weren't missing an actual meeting this Thursday. I called MaSha to run the basketball plan by her and ask her if she wanted to come along, and she was game! MaSha is actually a Gamecock fan (gasp!), but is so sweet to deal with our Clemson obsession and humor us by coming along with us to these kinds of things. Sometimes she'll even wear orange. ;)

Downtown for the Clemson basketball game

We got there around 5:45 or so and got in line for face painting. They also had someone doing balloon animals and a big bounce house. There was a huge inflatable tiger. The boys didn't really like standing in line very long, but there was lots going on to distract them.

Stokes getting his face painted

Ryan and Dada

Look who we saw! It was the Tiger Cub! He was hanging out and letting everyone get pictures. I decided to go up there with the boys so I could hold Ryan. William went right up to the Tiger Cub and gave him a big hug. None of the boys was scared. They just went right up - fearless!

Cheese! Except William, who would't turn around because
he was hugging the Tiger!

MaSha and Stokes with his new sunglasses, courtesy of Verizon ha

Such a cool dude

Dada and William

Mama and Ryan

We got some dinner and went in to find seats and feed the boys.

Warm ups. Go Tigers!

Eating and waiting for the game to start

Sweet Ryan checking out the action

Eating Bojangles

Dinner!

This little guy was in his element!

Stokes and William watching the game

Action shot

Stokes is obsessed with MaSha

William loved it!

We randomly ran into Dan and Katie McDonald. Thomas and I have both worked with Dan in the past, and I am once again working with him. I didn't even know he was planning to be at the game, since he lives about an hour away in Fort Mill. It was great to run into them and meet their kids!

Katie, William and Dan

We left at halftime since it was already way past bedtime. Going to the game was such a great experience. The boys did really well and I think they had a ton of fun! This was just a cool opportunity since it was a pre-season game and was no charge and MaSha was available and willing to come be an extra set of hands for us. I really enjoyed it!
p.s. Clemson won. :)