Thursday, June 22, 2017

Splash FUN

Our nieces, Leece and Madison, have birthdays that are only about a month apart from each other. My SIL, Tara, used to do two separate birthday parties for them, but has realized that it is completely too much work to do them back to back like that. She did a joint birthday party this year and it was a total HIT! Leece turned 4 and Madison was turning 2. The party was Saturday, June 2 at their house in Charleston and we packed the car as much as we could on Friday night before the party, got up early on Saturday, threw the boys in the car in their pjs, and hit the interstate going east. We stopped for a quick breakfast in Columbia and made it to Charleston in great time. We actually got there right in perfect time to get the van unloaded and the boys changed in time for the start of the party. We were, unfortunately, no help at all with party set-up for Tara...maybe next time! Luckily, MaSha went down early to help out.

Birthday Girls!
Decor:





The invitation said to wear swimsuits but knowing that it was in the backyard, we weren't sure what to expect. I guess I was thinking that there would be some baby pools and squirt guns and such. I was blown away to see the HUGE bouncy slide with water! WHOA! In addition there were baby pools, beach balls, water squirt guns, and anything else you can think of that would make a fun splash party. It was seriously awesome. The boys were so excited.

THE SLIDE!!!!
Lots of fun water toys around the yard
As soon as kids started going down the slide, Stokes jumped right in and was ready for the action. Surprisingly, William was a little timid and did not want to go down. He was happy enough playing in the baby pools, using squirt guns to water the tomatoes in their garden, "mowing" the grass, and chasing bubbles and beach balls. Ryan started out in the baby pool, but I just knew that he would love the slide, so later on in the party, I took him with him in my lap a few times. I also ended up getting William up there with me and let him slide down in my lap to get him warmed up to the idea. He wouldn't go down without me the first few times, but eventually he got brave and went down on his own....and then there was no stopping him. Even after the party ended, all the guests had left, but the slide people hadn't come to pick it up yet, so we maximized the time. The kids just kept going again and again, and it didn't take long for us adults to have our fun on the slide, too. Seriously, it was really so enjoyable!

William "watering" the tomatoes
Ryan in baby pool


Leece


cake time!

See that cut on his lip? We had a little party foul incident.
Stokes didn't wait for the little guy who went down the slide
in front of him to move off to the side before he went down
(totally against the rules that we had established) and Stokes
bonked heads with the other little guy and got a bloody lip.
The other kid was OK, and no stitches were needed, but
it was a close call!





Chillin'...










Cousin fun

sweet birthday girls!

Madison

Leece
Ryan

The best I could get
Stokes, the struggle is real
When the slide finally got picked up, we had totally gotten the full use out of it that we could and we got all the kids bathed and in pjs. We had a relaxed dinner at the house and thought we'd have a bunch of sleepy kids with all the playtime, sliding, splashing that they did without any naps (except Madison - she took a nap!). Not so much the case. Stokes and William kept flip flopping on whether they wanted to sleep in our room or in the room with MaSha and they weren't as quick to fall asleep as I thought and hoped that they'd be.

MaSha and Ryan

playing in pj's
modeling her new rain boots

Anyway, Tara and Matt did an awesome job on the party and we all had an incredible time! The boys, Thomas and I had a blast. Leece said multiple times that it was "the best" birthday party! I'd say she liked it, too!

Wednesday, June 21, 2017

Ryan - the latest + episodes

I started this post about Ryan and had it in my drafts. Before I even got around to publishing it to the blog though, I did have an bigger update I needed to post about.

Ryan had 2 seizures in the last week. Both were "minor" and did not require a hospital visit, but they scared us, nonetheless.

First was last Friday, the 16th. He was on a field trip to the zoo with his special needs school. I was traveling last week to Buffalo and was on a plane, about to take off, just before I put my phone on airplane mode, and got a call from Ryan's school nurse. She said that he had a seizure that lasted approximately 60 seconds and that he was fine. She thought it may have been induced by the heat as it was an extremely hot day. You may remember that one of Ryan's anti-seizure meds does not allow him to sweat much, and sweat is your natural reaction to cool your body off, so he can get overheated more easily than most people. I asked her if Thomas needed to come pick him up, but she said he was fine and seemed back to normal and everything was OK. I immediately reached out to Thomas to update him and had to send him a few texts before I had to turn my phone off and our plane took off. Thomas had Fifi go pick Ryan up around 2:00 that afternoon and bring him on home for our mental well-being. He was fine and acting like himself. Luckily, Fifi was here staying while I was out of town so it made it super helpful to have an extra person here in these types of situations. I made sure to call the neuro office to let them know about the episode. We chalked it up to Ryan being hot at the zoo and just kept a close eye on him all weekend.

On Saturday and Sunday, we went to the pool both days and paid close attention to Ryan and his needs. We made sure we put him in the pool any time he looked like he was getting too hot and all was fine. He had a perfectly normal weekend at home with us.

Monday morning, however, he slept in a little later than usual and when I went to wake him up to start getting ready for school, he didn't seem like himself. He was still in his bed, and his eyes were open, but they weren't looking at me or focusing on me, despite me calling his name and trying to get his attention. That's not totally out of the ordinary, but I was on high alert after his Friday seizure and was paying extra close attention. He was blinking and looked fairly normal, so I decided to pick him up to try to tell if he was seizing or just extra sleepy. When I picked him up, he did not display head control, and that's when I knew that it was definitely a seizure. I took him over to Thomas to take a look and then I put him on my bed so I could watch him and make note of the time to see how long this seizure would last. After about 3 minutes, I called 911. I spoke with the operator and they disbatched paramedics to our house. While I was on the phone, his seizure ended and he came to. It was about 7 or 8 minutes long, to the best of my knowledge. When the seizure ended, he was a bit groggy but still the same old Ryan. I want to reiterate that his seizures do not look like what you'd expect from a typical seizure. It's really just a lack of muscle control (meaning he's limp) and eyes that won't focus or look at me. There's no shaking or violent muscle seizing, which may make it harder for someone that doesn't know him to tell that he's experiencing a seizure.

The paramedics came about 20 minutes later and just talked to us. They did kind of a visual assessment and asked us questions and offered services. We did not send him to the hospital since his seizure was over and he was fine.

We kept Ryan home from school, obviously, and both Thomas and I took the day off to be with him and keep an eye on him. We were a little rattled. After several calls to the neurologist's office, Thomas was finally able to talk to Dr. Taft. He stated that there is no need for an office visit, but just that it's time for a change in Ryan's anti-seizure meds and told us to increase the dosage of one of the meds Ryan takes daily. We've known for a while that this current combination of medicines, while it has worked since December 2015 after Ryan's last seizure, it wouldn't work forever. As Ryan grows and changes, his medicines will need to change with him. Unfortunately, we won't know it's time for a change until they stop working and he starts having seizures. The two seizures that happened within the last week was the warning sign for us to make a change. The increased dosage is a minor change and we're hopeful that it will do the trick for us. If not, and if we see more seizures, we'll go back to the drawing board and talk with Dr. Taft again. We may be able to increase dosage even more, or think about changing medicines. The goal is to keep Ryan seizure-free for as long as possible, on the lowest dosage that we can and with the medicines that have the fewest (or least impactful) side effects.

While I was sad, scared and heartbroken about Ryan's two seizures, I'm also very, very grateful that the extent to which his seizure activity is limited. He hadn't had any seizures...at all...in a year and half. They are well controlled with his medicines, and his meds have relatively few side effects. To put it in perspective, there are some kids that have hundreds of seizures every day and can't find meds to control them. We're lucky and fortunate that Ryan's seizures have been relatively easy to deal with, in the grand scheme of things. Ryan is a blessing each and every day. He is truly an angel on earth and anyone that is around him can see what a sweet, loving boy he is.

Post-seizure snuggles with Dad on Monday...







******************************************************************************
And....here's the post from my "drafts" that was waiting to be published.

I realized that I haven't posted much about Ryan lately. My posts oftentimes are, "Stokes and William did this..." and "Stokes and William did that...". They are, of course, more active, and into more things, but Ryan hangs tough with them and goes along with everything. He is so laid back and just sweet as pie.


Last year around this time, he was drooling a lot. He didn't use to drool, and I'm not sure what brought it on, as I don't think he was getting any molars or anything like that. He had already exhibited that he had enough mouth control, since he wasn't always a drooler. It's still a mystery, but the good news is that after month and months of wearing bibs and changing t-shirts, he seems to have magically gotten better. Not that doesn't ever drool now, but he's definitely not soaking shirts any longer. He's no longer wearing bibs either. I'm thankful. :)


Ryan struggles with balance. He can't stand up without holding on to something. He tends to fall forward when we work with him on standing unassisted. But when he has something to hold - my hand, the coffee table, anything - he can stand for a long time and cruise. He's gotten good at walking while holding my hand(s) and he's getting faster. He likes to hold both hands, but sometimes I'll only let him have one and he'll walk a little that way.

In addition to walking, one of the newer things that we've been working on is going up the stairs. He used to not be able to lift his foot high enough to step up onto a stair, but now, I'd say over the last month or so, he's really made some improvements! I'll tell him, "Ryan, take a BIG step", and he'll put that foot on the step. I help him to shift his weight so he bears weight on that foot and then he'll bring the other foot up. He used to only be able to do it once or twice in a row, but now I can get him to walk almost all the way up our flight of stairs in our house while I hold his hands and help him shift his weight.

He's a great crawler and and it has gotten more into muscle memory than having to have focus on the actual movement of crawling, so he will pay more attention to us than he would before. If he's crawling, and I get his attention, I will ask him to come towards me and he'll just grin and start crawling like a madman towards me. Things like that are so rewarding to know that we're getting through to him, and he understands and wants to continue to make progress.

There are no updates on meds or therapies. His last neurology appointment was very straightforward and was essentially just a check-in, touch base kind of appointment. We've signed him up for two summer school sessions as his special needs school so that he can continue to get therapy there throughout the summer. We have a meeting with his teachers and therapists later this month to touch base with them and I'll make sure to post an update after that meeting. We're still putting his AFO braces on his feet/ankles on days that he goes to his special needs school, but he gets a break from those on days when he doesn't go there.


Overall Ryan's been healthy this spring/summer. He's eating well but still doesn't want to drink from a standard sippy cup or regular straw. We bring his honey bear cup with us wherever we go. He's turning into a bit of a night owl. He doesn't act disruptive, but he'll lay in his crib and kick his legs or just lay there sometimes until 9 or 10 PM. Ryan's still not talking or making letter sounds, but is "talking" more, or being more vocal. It's not all the time, but when he wants to make noise, he's doing it.

Ryan's the happiest little guy I know. He's honestly very rarely in a bad mood. Usually, if he's not smiling or easily entertained, then it's because he's tired. He's a gift in so many ways.

In a nutshell, that is where Ryan is right now. 

Tuesday, June 13, 2017

The City

I'm behind in my posts by two weekends, but had to skip forward to include this pic in celebration of last night's win for the Golden State Warriors, our new NBA Champs!





In reality, we don't really care that Golden State won, but the boys had these shirts from when Thomas and I went to San Francisco last year. What better day to wear the shirts and support SanFran than the day after their team wins a championship! Am I right?!?!?

Thursday, June 8, 2017

Adventures in Potty Training, part VI

This potty training series is back. Again. And yes, we've been working on potty training since last August. It's now June. *Sigh
#williteverend

Ok, here's the good news. No, wait....here's the GREAT news! William slept in underwear overnight Tuesday night for the very first time and.......NO ACCIDENTS! I was fully prepared to walk in Wednesday morning and immediately change the sheets and start cleaning up. Since this was our first night to try it, I was shocked that he was totally dry in the morning. I'm no dummy. I know that he will have some overnight accidents, but we are off to a fantastic start. I would say that William is 99% potty trained. I can't even remember the last time he had an accident. It's been at least a few weeks, if memory serves.* Edit - I started this post yesterday and then last night, he slept in underwear again, and the bed was soaked. We'll keep working on it.

To celebrate his first night of underwear and no accidents, we made Rice Krispies treats (which is awesome because they don't have eggs - no substitutions have to be made - or peanuts!). I even let the boys help me (a little) to make them. I was so proud and excited for William!

Stokes, on the other hand, had a major speed bump. Major. He was going along just fine, few accidents during the day and diapers/pull ups at night. Let me note that Stokes has always had very sensitive skin. He used to get very bad diaper rashes regularly as an infant, several times they were bad enough that we had to get Rx rash cream. So recently, for some reason, he didn't want to poop on the potty anymore and was holding it. Due to that, he would wind up with streaks in his underwear. He wouldn't tell anyone about the small accident in his drawers. The streaks that somehow made it out would irritate his skin. He would get a really bad rash, which would make it painful to clean or use the potty. So he would be even less interested in using the potty or even letting it out. See where I'm going here? Vicious cycle. Not good. His rash got so bad that it would break my heart to try to clean his bottom. He would scream and cry and I know that it was really, really painful for him. We once again had to go to the pediatrician to get some guidance (no Rx this time), but we got aggressive on stool softeners, probiotics and rash cream (Flanders!!!). That whole fiasco lasted probably about 2.5 - 3 weeks. It was not awesome. His bottom is finally healed now though and he's doing #2s on the potty...and getting big celebrations each time! He's not totally consistent, but we've gotten through the roughest patch and as long as we can keep moving in the right direction, I'm happy.

Checked on them one night last week before
I went to bed and found this. Stokes had gotten
onto William's bed with him. They love each other!

I am sincerely hoping that the 7th post in this series is the one celebrating that we have 2 potty trained little fellas! One day maybe we can say we have THREE potty trained little fellas, but we'll take that one day at a time. Stay tuned! 

Tuesday, May 30, 2017

Memorial Day Weekend 2017

Wow! What a weekend. We did a lot of stuff, had a lot of fun, and now we're paying for it on a lazy, drizzly, back to work/school Tuesday. Did. Not. Want. To. Get. Up. This. Morning. Anddddd....neither did the boys. #grumpykids

So anyway, our weekend of fun began on Friday evening when Thomas and I picked the boys up from school and went to our favorite Mexican restaurant, Anita's. We got to sit outside on the patio and there was a fantastic breeze and we were loving life! The boys chowed down on some chips and salsa. I think they get that from me. ;)
Silly boys
Dada and Ryan

William - killing some chips and salsa
William and Stokes

On Saturday, we went to a birthday party for a school mate at the downtown airport and the boys had such a great time playing and watching airplanes. I didn't get any pictures during the party but it was cute and the boys got to play a lot.

Saturday evening we had MaSha over to grill out at our house and have a laid back dinner with us. Thomas made us chicken kabobs and MaSha brought s'mores for dessert. We ate out on the deck and stayed up later than usual. That turned out to be a trend over the course of the weekend!

Ryan REALLY liked his s'more.
It was everywhere!!!!


Sunday morning, I couldn't resist but to begin the red, white and blue attire scheme for church.
The boys with Mama before church
The boys with Dada before church

Side note: we knew that we weren't having Sunday school, but thought that there would be children's church. Children's church is just where the kids start out with us in the sanctuary, through the announcements and a few songs and prayers, but then they get a children's message and leave to go for a special children's worship before the sermon starts. But to our surprise, there wasn't any children's church on Sunday and we weren't prepared. We had a few cars to play with and a few snacks, but I spent a lot of time going back and forth between our seats and the restroom (because the boys kept telling me they needed to go potty - they each went at least twice in the span of one hour.....eye roll.....). I'm sure that we were kind of a distraction to others sitting around us. Anyway....

Washed fruit ready for a salad!
After church, we ate a quick lunch at home and then went over to Jacqui's parent's house to check out their new pool. It was cold...but so, so awesome! This was the boys's first pool trip for this year. It's been torturing them to drive by a pool to and from school each day that we can see from the road. That pool opened up a few weeks ago and the boys couldn't understand why our pool wasn't open. They've asked about it just about every day. I was so excited to tell them that we were going to a POOL!!!!! There were other kids over there playing and the set up is just perfect for entertaining and just hanging out. It was so enjoyable. We spent several hours over there and would have stayed longer, but we had another item on the day's itinerary.



Hot hubby

Ryan loved the horn on this pool toy

Pool selfie

Big Ben - such a cutie!

Hanging out with Ry-Ry

With my bestie, Jacqui




After the pool, we changed back into clothes and met up with our church small group to do a cookout. We were relatively latecomers to the small group, as it started before we were as involved in church as we are now, but even since we've been in the group, it's grown quite a bit, both with new families joining and with new babies being added to the mix. It's fun to get together because we all just collectively watch and keep tabs on all the kids. We were having such a good time visiting with our friends and Stokes and William were running around the yard and trying to keep up with the big kids, and it stays light out later, that we didn't even realize until we got to the car that we stayed until 9 PM.

Kale salad we brought to the cookout

sleep boy fell asleep on Thomas

Our awesome small group!

When we got home, we just brushed teeth, put on pjs and put the boys to bed. They were so tired after the pool, no nap and then the cookout, that they were out like a light within 3 minutes of us closing the door to their room. Want to see what beds of super tired little guys look like the next morning?


Their beds do not usually look like that at all. They literally slept on top of their beds and did not move all night.

Monday was an awesome day, too. We had a patriotic breakfast! Buttermilk blueberry breakfast cake was a first time try. It's pretty good but based on Thomas's reviews and the boys reactions, it's not going to become a new staple at our house. I had to substitute apple sauce for eggs (for Stokes's allergy) and didn't have buttermilk and used the recipe's suggestion of milk + vinegar, so that may be why it wasn't as loved as I anticipated.



We spent all afternoon at our neighborhood pool. I think it's safe to say that the boys once again LOVE the pool. We got pizza and had watermelon and snacks there so we could extend our time. When it was clear that everyone was pooped, we went home and bathed the boys.


"It's too cold!!!"

"Ahhhhhh!!!!"

"Ok, now I like it!"

Pizza for lunch


Watermelon time!
Poor guy fell asleep on Dada again!




The pool is literally about 3 minutes from our house. This is what we had when we pulled into our driveway. That's how you know you used A LOT of energy playing!




I made them do a quick photo shoot for me in their adorable red, white and blue Loggerhead Apparel shirts* and then we were off to MaSha's as she invited us to dinner at her house. 




Asleep again on the way to MaSha's!

We played outside for a while when we got there, and went in once we decided that we were hungry and ready to eat. Good timing, too, because it was raining during dinner. Monday was the 3rd day in a row that the boys didn't get a nap, other than (very) short cat naps in the car, and the full days and excitement of the pool was beginning to show. We had some sleepy, grumpy little fellas on our hands. 

MaSha showing William and Stokes
her garden and tomatoes!




MaSha & grandsons


They were, once again, asleep within a few minutes of when we put them down to bed last night. 

All the fun and playtime this weekend made it really hard to get up and out of bed this morning. 

Although it's fun to wear the right colors and go to cookouts and swim at the pool, Memorial Day is about so much more than that. It's such an important day for our country. It makes me sad to think about all the sacrifices that others have made for our country and for our freedom. 

Bildergebnis für greater love has no man

*I love Loggerhead Apparel. I have a few dresses and a long sleeved tee and Thomas and the boys have some shirts. They're so soft and comfortable. And they're made right here in South Carolina. I'll post more details about them soon! Make sure to check them out - http://www.loggerheadapparel.com/

Outtakes:
So tired....and whiny!

*tears*

Ryan got the right idea!