Monday, April 13, 2015

BBQ and football

This past Saturday was a very fun and eventful day for our family. We did TWO activities - woop woop!

Before we left our house, I had to take a few pictures of the boys. It was a beautiful day and the flowers in our yard were blooming and I felt so grateful. Look at these handsome little things!




Our day of fun started out with a BBQ fundraiser for a fellow triplet family. The fundraiser was set up to benefit the Long Party of Five March of Dimes team. The mama, Carly, has been an amazing resource and friend to me. I met her when I was not very far along in my pregnancy. Carly is a labor and delivery nurse and she and I met when I was in the hospital for a procedure about 14 weeks along in my pregnancy. She came and introduced herself and told me she also had triplet boys and I remember thinking that she looked so great and seemed to have it all together and that there was hope for me yet. She was so friendly and sweet and gave me her email address so I could continue to ask her questions about triplets! When I ended up in the hospital on bed rest, she made a point to come by my room several times while she was working to check in on me. She even brought me a gift while I was there! Carly and I had different issues throughout our pregnancies, but we had several things in common. We both had all 3 boys, we both gave birth way too soon (despite our bed rest and attempts to continue carrying the babies as long as possible) and we both had 3 babies in the NICU for an extended time. Our similarities don't end there. Unfortunately, Carly also has a son that experienced Infantile Spasms. I feel like we have some crazy connection and God has put us together for a specific purpose. Both of our major commonalities are fairly rare (triplet boys and a son with IS). Carly's son Brody has cerebral palsy and needs a lot of assistance and he, too, has lots of therapy. There are lots of things about Brody that remind me of Ryan. Carly is about a year and a half ahead of me, time wise with her boys, and I have a million more questions for her. She and I are planning to get together soon to have lunch and just chat. I want to ask her all about Brody's equipment and his prognosis; she's offered to advise me about certain things that they've seen a lot of success with in regards to therapy. I know I'm greatly benefiting by knowing Carly and her family, and I hope it's worthwhile for her, too, to get to talk to another triplet mom who understands at least some of what she goes through. So that's a long introduction to say that when Carly invited us to come to their BBQ fundraiser, there was no way we were going to miss it!

They had BBQ, beer, soft drinks, toys and games for the kids and an awesome Bluegrass band. It was all the makings of a great party! We didn't know anyone there except for Carly, but quickly met her husband Jim and other friends and family members of theirs. The food was great and the boys had fun playing around. I was so excited to meet the Long triplets in person after seeing pictures of them and hearing Carly talk about them. They were each so handsome and looked so different from each other. It was also apparent how different each of their personalities are....much like my boys! Another highlight was the bluegrass band. They started playing and immediately played Thomas's two very favorite bluegrass songs back to back - Rocky Top (Thomas is a huge Tennessee fan, after Clemson of course) and then Fox On the Run. At that point, we had to pack it up and head out due to our next activity for the day, but after meeting so many friendly and hospitable people, drinking a cold beer and listening to bluegrass, we were tempted to just hang out there all day!

First arriving at the BBQ

Bounce house time!
Stokes

Thomas trying to teach them to jump

They weren't sure what to do

They ran into each other and it was so funny!

Figuring it out and Maddox came by to play for a minute, too


Ryan - waiting patiently in his stroller

Coming out by way of the slide

So many toys, so little time! They were having lots of fun

Handsome Ryan eating lunch

William and me dancing to the bluegrass music

Meg, Brody's NICU nurse (and a member of our church), came
to the BBQ with her family. Here she is holding Brody and
reconnecting with him. NICU nurses and doctors are incredible
people and hold a very special place in my heart.

The band

The food

Carly, me and William

The Longs and the Peerys - count 'em up...
that's 4 adults and 6 little boys!
Although we hated to leave, we had a prior commitment with some other friends. We had decided way back that we were going to take the boys to the Clemson spring game, the Orange and White game, along with the Atwoods. For those of you that don't know, the spring game is a where the players on the same team play against each other. They're broken out into 2 different teams and they scrimmage. It's definitely more of "football light" kind of game since they want to make sure no one gets hurt. It's really just a way for fans to see how the players are doing and get a preview of what we might see in the fall when the season gets underway. It's also a way for the coaches to get a feel for the players and it helps to decide who gets the starting jobs. Anyway, we thought it would be a good experience to take the boys Death Valley for their first taste of Clemson football during the O&W game. It's usually not very crowded and is super laid back. I can't image trying to go for the first time amongst a sea of 86,000 people wearing orange. So this was our best bet.

We planned to call the Atwoods when we were getting close to campus so that we could park near them and do a little tailgating before the game started. Our plans got derailed, however, when we were late, traffic was backed up, the lot where the Atwoods parked got full and we couldn't get in, etc., etc. We ended up getting there after the game had started, parked at a totally random parking lot away from the Atwoods and just had to go meet up at the stadium. Nevermind that I had stayed up late to make ham and pickle roll-ups, packed blankets on which the boys could play, had a cooler full of beverages and a memory card in my camera waiting to capture a thousand special moments. Alas, we had to roll with it. So the crazy thing was that there were SO many people at the game. Seriously. There were 37,000 people there and there was a new record set. This created a slight issue with our strollers. We didn't know where to put them. We've been to a spring game before and there was plenty of room everywhere. Based on our previous experience, we thought we could just stroll up in there, find a whole row to ourselves and fold up our strollers right next to us in the stadium. Nope. Not this time. We wandered around in a crowds and just pretty much stopped in a breezeway for a while so we could come up with a game plan. This was good because it was shady and there was a nice breeze, all the kids seemed to be OK hanging out in their strollers and people watching, and then we saw our friends the Hornes!

Suzy and Thomas Horne

William clapping

Showing us "Touchdown"!

Brent, Hayes and Thomas

Brady enjoying his ice cream

Stokes and Ryan - just chillin'
So we hung out there for a while and eventually made our way to the other end of the stadium and got the strollers into the stadium in the handicapped area (which was empty, and was the only reason we took up shop there). At this point, the game was in the 4th quarter, so we just hung out and talked there until the game ended.

All the kiddos - Brady, Hayes, William, Stokes and Ryan
It wasn't exactly what we planned or expected, but it was still fun none the less. I think the boys got a good first taste of Clemson football and had fun on their first visit inside Death Valley. No one cried or got scared when the cannons went off for each touchdown. No one got too fussy or bored. They pretty much just like looking around and taking it all in. They also had fun hanging out with their new buddies, Thomas, Suzy, Brady and Hayes. :)

Pictures with Ryan before loading him up and heading home....





It was a fun and busy day. There were no official naps, no meals and snacks in the high chairs, we were just seeing how the day went and hoping that we had packed enough stuff to be prepared for whatever they needed. The boys were troopers and did great and Thomas and I enjoyed the whole experience. Maybe one day we'll brave a sold out game with 86,000 of our closest friends with all 3 boys....maybe. ;)

This boy was whooped and could not keep his
eyes open on the way home. Sweet William....ahhhh.

Thursday, April 9, 2015

MRI Confirmation

Ryan had an MRI last week, and this week I spoke with his neurologist and got the results. I got some information, but needed and still need time to process and discuss and ask more questions. Thomas and I have had limited time to discuss it with each other, with other commitments and Thomas traveling for work, but plan to discuss it more in-depth and have a follow up call with the neurologist soon.

Selfie this morning

The MRI gave the doctors confirmation on what they thought in regards to him having a migrational defect. Ryan has Pachygyria. Although I had not heard that term before, the description is in line with what we have been hearing since his MRI last spring. Forgive me that this may not be 100% accurate and in the real medical terms, but from what I understand at this point, it's a migrational defect and Ryan's nerve cells in his brain did not migrate correctly very early on. This would have happened around weeks 8 - 10 of gestation and is probably genetic. The abnormal migration causes quite a few issues in his brain and it is diffused, meaning that it's not contained to one area, but rather is throughout his brain - front, back, left and right. Pachygyria is without a doubt the reason he had infantile spasms and the underlying cause of his developmental delays. The grooves in his brain are not as deep as they should be, which is similar to licenssephaly, which I have mentioned on the blog before. Pachygyria is a gentler form of licessensephaly. 

Checking out the outside world

Such a sweet boy
The main concerns for Ryan with pachygyria are that seizures problems are predicted for the future throughout his life as well as developmental delays. We are clearly already aware of his development delays and have understood now for quite some time that he will probably always face some level of delay in his development. In regards to seizures, that too, we've been informed may be something that we have to deal with. We haven't seen any seizures since his infantile spasms recurrence from last summer was resolved, and have continued praying that he won't begin having seizures again. I don't know yet what the probability is about the seizures, but I'm desperately hoping that he can somehow avoid them. The seizures really scare me. I need a lot more education about them - what to look for, different types of seizures, what to do if it happens, how dangerous they are, how to prevent them/medical options, etc, etc, etc.

Happy baby!

I didn't get a picture quickly enough, but he
was playing with his feet, which is a GREAT
thing from a developmental perspective.

Right before bedtime tonight
So although we have a term we can put with Ryan's case now, it doesn't really change anything at this point. We will continue with all the therapies and especially continue with all the prayers. I'm currently making a list of questions for the neurologist for our follow up conversation. I'm not one that can think quickly on my feet. I have to take the news and give it some time to process in my mind and then go back for more information. I'll keep you updated as I learn more about pachygyria and about Ryan's future. Thanks for the continued prayers for our sweet baby boy.

Monday, April 6, 2015

He Is Risen - Easter 2015

What a beautiful Easter Sunday we had here!


It was a busy morning with last minute Easter dinner prep, getting boys up, fed and dressed, taking pictures, showing them their Easter baskets and taking more pictures. Notice I said we showed them their Easter baskets but no touching! Y'all, their outfits were too cute. I couldn't have sticky jelly beans and chocolate smears all over them before we even went to church! Thomas and I talked to the boys about the meaning of Easter while they ate breakfast and they were on board with it. ;)

The Easter bunny came for all 5 of us!

Ryan

William

Stokes

With their Easter baskets...








All 3 of my boys! They just looked too cute!!!




We made it to church (boys in the nursery) and were so glad that we did. As expected, it was a beautiful service and the music was wonderful. There was just an overwhelming sense of joy and celebration that we could feel throughout the congregation. We loved hearing the Good News.  We surprised MaSha by having an Easter lily donated in her honor, and we got one in memory of my mom. We got to take our beautiful Easter lilies home with us after the service.

After church, we came back to the house for lunch. While I was finishing up the meal preparation, MaSha and Thomas helped entertain the boys and they finally got to play with their Easter baskets. They had a big time. We needed something for them to do since it was past their normal lunch time and they had skipped their morning nap. We were probably thisclose to a meltdown but they hung in there.

Our Easter eggs we dyed

Post-church family picture...at least 2 of us were smiling :)

MaSha with her grandsons

MaSha and Ryan

William playing with his new shoes

Showing Ryan his Easter basket

Trying to entertain while waiting on lunch

Going for it




We didn't do a super fancy lunch, but I tried to make it special for Easter. MaSha brought spiral ham and watergate salad and we had asparagus, hash brown casserole and rolls. MaSha gave up wine and sweets for Lent so we made sure to have some wine and a decadent dessert (turtle brownies, vanilla bean ice cream and hot fudge topping) on hand and ready for her! Lunch was great - very delicious and I ate a little too much!

I had super girlie wine for MaSha and me -
pink, bubbly Moscato. :)

The boys were ready for lunch!

Table set and ready for food!

These two were pooped after such a big morning without a nap and having a late lunch and then they went down for their afternoon nap an hour later than normal. Keep in mind that we are very schedule oriented, to keep life as easy as possible, so although it doesn't sound like a huge deal, we broke several scheduling points on Easter. Even after Ryan woke up a few hours later, these two were still zonked out!

Sleepy William

He sleeps in the strangest positions

How is this even comfortable?!?!

We're humbled and so thankful that God gave his only son to die for our sins. And when Jesus came back to life on the third day it was true that the world would never, ever be the same.