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.

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.

Easter Egg Hunts

Now that the boys are a little older, we're able to get out do more things. It also helps tremendously that we have a nanny that can help me with them when we are out and about. Last year, I took them to one egg hunt and it was a struggle logistically just to get them there and get them home, nevermind the fact that they weren't moving around much and stayed in their car seats pretty much the whole time! We did a little better this year!

First up: Tuesday's Easter Egg Hunt with the Bakers. This is the Easter Egg Hunt in which we participated last year. See pics from last year here! It's a fun get together with a bunch of my girlfriends and all their adorable kiddos. So much fun. The weather was absolutely gorgeous! The egg hunt started at 11:00, but we were, of course, LATE, so we got there around 11:30.

Before we left the house, I insisted we take the obligatory boys in a chair picture. Is it sad that these were the absolute best pictures I could get? It didn't help that we were running late so I didn't have much time to work on it.

William, Ryan and Stokes

When we got there, our hostess, Sheilah, and the other grandmas had the kids on the front steps and were singing songs while all the moms were out back hiding the eggs.

Super cute bunch of kiddos

Next up, out back for egg hunting. The funny thing was that my boys could not care less about hunting Easter eggs. They didn't want to hold their baskets and didn't have the slightest interest in finding the eggs. Ryan just hung out wherever we put him, but Stokes and William were going in opposite directions. Thank goodness Layla was with me!

Getting everyone ready for the hunt!

The search is on!

Sweet Ryan hanging out

All the moms and kids...a few got cut off, sorry!

I have some pretty friends!!

The grandmas with the kids. Sheilah was so sweet and wanted
my kids in the picture even though none of their grandparents
was there. A few of these sweet ladies held them for the picture.

My boys and me

After the eggs were hunted, it was lunch time! We had a great spread! Lots of kid-friendly options and delicious salads and such for adults. Everything was delicious!

How sweet is this moment? A bunch of the kids were hanging out on
the blanket and eating their lunch, picnic-style. I need to train my
boys how to do this!

Ryan

Stokes

Brooke blowing bubbles with William

Next hunt: we showed up for the Bright Start monthly outing, which happened to be an Easter egg hunt this month. Bright Start is the company where our EI works and they do fun playdates each month. We typically aren't able to go because Ryan has physical therapy on Fridays, but since this is Good Friday, our PT took the day off and we were able to make it! Siblings and friends under 5 were welcome, which worked out perfectly since Tara and Leece were here. They stopped in Greenville to spend the night on Thursday before heading up to Knoxville for Easter weekend. The egg hunt was held at a park so after the boys and Leece were done finding eggs, we let them play on the playground. This was our first playground experience. It was a lot of fun, but also exhausting. It was so helpful to have Layla, MaSha and Tara there. We had 1 adult per kid, which was very good!

MaSha and Stokes hunting eggs

Layla and Ryan

He got an egg!

William checking out his pink egg

Cute cousins - Leece and William

Sweet girl Leece!

Wild man with his MaSha

Such a little cutie!

On a mission

Ryan and Layla

Layla helping Ryan up the stairs

Leece and Ryan

Hugs all around!

William saw our EI April there and
kept reaching up to give her a hug!

Stokes and MaSha

Ryan working on craft time

Leece with her Easter egg maraca

Enjoying the beautiful park

Walking around the park

Post-egg hunt, playground time!

Tara and William on the "motorcycle"
in the playground

Ryan LOVED the swing

MaSha is a champ with two at a time!

Smiling and happy boy

Layla and Tara with the kids on the swings

Stokes loved the slide...

...but was more interested in climbing UP
than sliding down.

Ryan sliding down

Tara and William waiting for Leece to slide down

MaSha was at the top of the chute

Stokes eventually got the concept of the slide

Cutie kids!

It was (as usual) a challenge to get everyone to sit
still and look at the camera. Leece, however, was a champ
at taking pictures!

I love these four!

Tara and me with kiddos

Take 2

We had a great time at the park, but it was tiring...for all of us. Stokes and Ryan fell asleep in their car seats on the way home and all three of them took a good, long afternoon nap. :)

Final egg hunt: our friend Wendy hosts an Easter egg hunt every year and we weren't able to make it last year and I was so disappointed. I was so very glad that we could go this year! The setting was beautiful, and there were tons of eggs for the kids to find. There were some big kids there and they were so sweet to share some of their findings with my boys! After the egg hunt was finished, Wendy had a beautiful brunch set up for everyone. It was a perfect morning and we all just had such a great time.

This was the egg hunt invitation. Have you ever seen a cuter invitation?!?! I had to include it on this post because I thought it was so adorable!

Wendy and Stokes

William and Thomas

Ryan and me

Ryan found a purple egg in a planter!

Finding eggs everywhere!

Content to check out the action around him

He's a mover and shaker

2 on 1

William - doesn't he look proud of his egg?!?!

It's a full time job just trying to keep up with him

Some of the other kiddo looking for eggs

All the kids that were at Wendy's egg hunt - aren't they cute?

Family pic!!

Thomas, Stokes and William

Our brunch spread - soooooo good!

Stokes and William sat at this little table for brunch.
It was the perfect size for them. Meanwhile...

Ryan was being held by Wendy's sweet mother....

...and her sweet father!

Cate and Stokes

Three Easter egg hunts are in the books for 2015. I'm pretty sure next year egg hunts will be even more fun because the boys will understand the concept and actually try to find some eggs! I love any excuse to celebrate and see friends and family so I was more than happy to attend everything this year, and am already looking forward to Easter 2016 for more egg hunts, get togethers, and socials.

Oh yeah, and I don't give the boys much (or really any) candy, so thanks, hosts, for all the candy we got this week at the egg hunts. Pretty sure Mama will be eating most of it...and possibly sharing a little with Dada. ;)

Stay tuned for an upcoming post with pictures from Easter Sunday.