Three's a charm

Happy St. Patrick's Day, y'all!

We had a good day today. I still feel very lucky for so many reasons. My boys are such amazing little lucky charms.

I did, unfortunately, have to work, but took breaks throughout the day to check on my little leprechauns...and shocker (!!!!)...take pictures. :)

Our day went something like this...

Ryan's OT appointment mid-morning

Ryan and his OT, Emily

Lots of fun playing!

Later in the afternoon, Ryan and William had Early Intervention. Guess what! Our EI April came back from maternity leave and today was our first appointment with her. The boys love April and were glad to see her again!

Ryan and EI, April

Lots of sitting practice today

William flirting with April

After dinner and before baths, I took the boys out on the deck for a little fresh air and to enjoy this PERFECT spring weather.

Stokes did not want to sit still so the window of opportunity
to get any pics of all three of them was very slim!

Just chilling...

I know I've said this before, but what a difference a year makes! I tried to recreate a few pictures that I took on St. Patrick's Day last year. I get such a kick out of seeing these!

2014

2015

2014

2015

And because I think it's funny to see some of these, here are a few "outtakes" from my staged pictures. Don't forget, we like to keep it real around here. And getting one good decent picture of 18 month old triplets is hard work and takes at least 30 bad/funny pictures!

Hope you're feeling lucky today and everyday!

Oh happy day

Miracle. That is the word that comes to mind when I think back to Ryan's neurology appointment from this Wednesday, 3/11/15. It's a beautiful, beautiful thing when you go to an important appointment and come up with huge smiles and feeling like you're on top of the world.

Dada and Ryan - playing and laughing

I was not nervous heading in to this appointment. Ryan's been doing awesome, we're seeing some progression in his motor and cognitive skills, he's eating well and his last EEG showed NORMAL brain activity (read more about that here). So based on all of that, I wasn't nervous. I just wanted to talk to the Neurologist and get a forward thinking view of his prognosis and see what we had in store. Thomas came to this appointment with me, which I love! It's so helpful to have two sets of ears hear what the doctor says for a few reasons. He and I might interpret something differently so it's nice for us to summarize our "take" of what was said later, and it's a lot of information to take in so we feel like between the two of us we can retain most of what was said.

Here's the overview. Ryan's Neurologist, Dr. Taft, was very, very pleased with how well Ryan is doing. He walked in and the very first thing he said was, "I have a gift for you." See a picture of our treasured gift below*. He said that based on everything he's seeing from Ryan, he could very well be in the small minority of kids that had infantile spasms and don't have seizures later on in their lives, I believe he said only around 10 - 20% of IS kids don't have ongoing seizures. The fact that Ryan's brain development was abnormal, as seen in previous MRIs, makes his chance of escaping a life with seizures even more unlikely, I think that was 2-5%. But, that's how it's looking right now. Hallelujah! Dr. Taft was very impressed with Ryan's development with head control, strength, weight bearing and attention/cognitive skills. He said that Ryan's in the best spot he could be in. I wish I could remember his exact words so that I could quote him here, but he said something along the lines of Ryan being remarkable and he was not expecting to see him looking as great as he does, based on all of his previous tests and what's he's seen about Ryan on paper. He wasn't quite sure of an explanation as to why Ryan is doing as well as he is. I sure do know the explanation. Our God has His gentle and loving hands on Ryan. I told Dr. Taft that we've been praying very hard for him. I know a lot of you do, too. THANK YOU. From the bottom on our hearts, thank you. That is really the only explanation for Ryan's development.

I don't want to be a downer or be overly dramatic, but I do want to be realistic about how serious and grave Ryan's initial diagnosis was. There was a time that we didn't know if Ryan would ever be able to gain head control, ever be able to support his own weight, whether he would ever be able to do anything without the use of a wheelchair and other equipment for disabilities. We, of course, still don't have a crystal ball to know what his future is going to look like, but Ryan is proving to us each and every day that he's a fighter and we should not count him out of anything. We are going to stay the course and continue with each and every therapy we can get and definitely pray with our whole hearts, all the time.

Next steps include another MRI, which is scheduled for a few weeks from now. He will have to be sedated for the MRI, so I'll request some prayers from y'all again before that appointment. Dr. Taft said he would be surprised if we don't see some major improvements from what the last MRI showed us in terms of brain development and abnormalities. We will also come back for another check up with Dr. Taft in about 4 months, just to continue checking in and making sure Ryan's on a good path and we're doing everything we are supposed to be doing. As long as Ryan stays on the same path and continues to do as well as he's currently doing, Dr. Taft will probably take him off Topamax, which is the only medicine he's currently taking. Topamax is anti-seizure medicine. Dr. Taft is not ready to take him off yet, but it may be in our future plans for Ryan. I am almost scared to say all of this stuff aloud and to type it up here in the blog, almost like I am going to jinx all this great news and sabotage the continued improvements and development we hope for Ryan. Knock on wood!!!

Needless to say, it was a GREAT appointment, and that's putting it mildly. Our other Neurologist, Dr. Hunnicutt, came in to see Ryan for herself and then as we were leaving, we saw our EEG techs in the hallway. Ryan and I got to know the EEG techs fairly well last summer and fall when we were going for EEGs on a weekly basis. I'm not trying to brag, but anyone that is around Ryan just falls in love with him. So the techs love Ryan and wanted to come see him and check in on how he's doing. We were standing there in the hallway with 2 EEG techs and a few of the nurses that we've also gotten to know and we announced to our small group, with huge smiles on our faces, that Ryan had his first ever normal EEG and I kid you not, they all started cheering for us! What a moment of complete joy. I will probably never forget that.

As always, continued prayers for our sweet boy are requested and appreciated. I will keep you up to date for future appointments, developments and test results. Thanks be to God.

*One of the very best gifts I have ever received, print outs of two of Ryan's EEGs:

This is a printout of Ryan's EEG from July 2014, when he had an infantile spasms recurrence and right before we started his second round of ACTH steroid medication - you can read about that more in this post, A recurrence. It is just a snippet of the overall EEG and shows a 10 second reading of his brain waves. Notice all the spikes - that is NOT good. His brain was firing all over the place and was very disorganized at this time. Side note: this was being recorded while he was asleep, this was not even during a spasm. 

This is a printout of a 10 second reading of his brain waves from his last EEG on 2/9/15. This is what a normal EEG looks like. He was asleep during this one as well. His brain waves were nice and even with no spikes. Can you tell the difference between the two EEGs? This gives you a visual of what huge strides have been made over the last 7 months or so. Dr. Taft said he whole report pretty much looked like this. How beautiful is this?!?! It's a miracle.

Sunday Funday and DST

As a continuation of our awesome weekend including our perfect forecast, here's our Sunday recap.

Let me start out by saying....thank you, Daylight Savings, for costing me a small amount of time to "sleep in". Let's just talk about this for a minute. I love that it's light out later in the evening and all, but why do we have to change the time?!? It's so weird. Anyway, here's our Daylight Savings Time story.

Thomas and I sometimes take turns to sleep in. On a typical day, we both get up at 6:30. I immediately hop in the shower and get myself ready while Thomas goes downstairs to feed the dogs and let them out, make milk cups for the boys and do any little chores that need to be done in the kitchen. After those things are accomplished, I go in to the nursery at 7:30 (and not a minute earlier! haha) and change diapers and give everyone their milk while Thomas takes a shower and gets ready. On some weekends, we decide to take turns sleeping in. For example, on Saturday I will get up at my regular time or a little early and take a quick shower and take care of the dogs, make the milk cups, etc and get the boys out of bed while Thomas sleeps until 8 or 8:30 (a real luxury with little ones!) and then we switch places on Sunday. That was the plan this weekend and Saturday went out without a hitch and Thomas got a few extra hours of glorious sleep.

Then comes Sunday, aka my sleep in day. It took me a few minutes of groggy, half asleep thinking to realize that it actually was Daylight Savings time and when I thought it was 7:00 and was planning to nudge Thomas and roll my sleepy head over, it was actually 8:00 and we were already behind schedule! Yikes! Thomas and I both hopped up and got rolling. The boys were sleeping away - no issues there - but we had plans for church and needed to get back on schedule pronto. We quickly got ready and got the milk ready and went into the nursery around 8:15 real time and proceeded with breakfast at 9:00 (vs. typical breakfast time at 8:30). After breakfast, we had to get them upstairs, change diapers, get them dressed and ready for church. And they looked SO CUTE that I had to take a few minutes to take some pictures of them before we left for church.

We also made it to church pretty much on time. This was an important service for us because MaSha was officially becoming a member of our congregation. I wanted the boys to dress us a little extra for the occasion. It doesn't really matter what they wear to church since they go to the nursery anyway, but I try to usually put them in button down shirts and either corduroy pants or khakis. This Sunday, however, we pulled our a set of their bow ties and a button down shirt that I actually had to (gasp) IRON! They looked super adorable. Southern gentlemen through and through. Check them out.

Sweet boy chilling on the couch before church

After church I set them up in our front yard to take a few more pictures and to give us an excuse to just be out in the sunshine and warmth for a few precious minutes. It was such an absolutely gorgeous day!

After lunch and their afternoon nap, we wanted more fresh air and decided to take the boys out in their choo choo wagon and let them watch as we gave the dogs a bath in our driveway.

Then to continue with Sunday Funday (I know, I know, the excitement is almost too much to handle!), we gave Stokes and William spoons and bowls of mashed potatoes to try to learn how to eat with utensils for the first time. This included lots of laughs and not a whole lot of actual food on a spoon ending up in a mouth.

They gave up and just started trying to eat the food straight out of the bowl

Notice the potatoes ended up on his tray :)

Apart from the rough start Daylight Savings put on us, the rest went off smoothly. They slept well during naptime and went to bed at the regular time. Monday morning was darker than usual and I had to wake them up at 7:30 AM. Now we're pretty much back on track. 

Choo Choo

We knew Saturday was going to present us with some beautiful springtime weather and wanted to do something fun outside with the boys. A friend of mine told me about a train ride at a nearby park so I looked it up online and found out that Saturday was its opening day for this season. I was a little concerned that it might be really crowded but decided that we needed to get out and try it. We invited MaSha to come with us, packed the car, and skipped the morning nap. As I'm sure you can imagine, it's so much better and easier to have 3 adults on hand for any outings!

To my surprise, it really wasn't crowded at all and it was awesome to see this park for the first time. There are several playgrounds and covered areas with picnic tables and such. We got there right about the perfect time to give the boys their snacks. We found a gazebo right near the train and sat them down to eat a few handfuls of goldfish. They were enjoying looking around at the train and the other kids.

MaSha and Stokes watching the train

Daddy and Ryan

MaSha and Stokes

Ryan getting a bottle

William sitting at the table like a big boy

William and me

We love sippy cups!

The train ride was so much fun! It went on a nice and leisurely pace. The boys were just taking it all in and we were trying to get them to make "choo choo" noises.

I wanted a picture with the sign. MaSha is such a champ -
holding 2 at one time!

The train!

MaSha and Stokie

Thomas and Ryan

Family picture on the train

Checking out the sights at the park

 

The conductor was so nice and made a point to come by and talk to us and then even offered to pose for a picture with us!

 

After the train ride, we opted to skip the playground and go grab some lunch so we headed out to Bellacino's. Here's what we do when going out to eat. One adult will go inside and scope it out to see if there are any good seating options and check out the high chair scene while everyone else stays in the car. Imagine the horror of getting the stroller out of the trunk and unfolded (if less than 3 adults are present, otherwise we can all carry one), unbuckling 3 car seats and unloading all 3 boys, loading and buckling them into the stroller, getting the van doors closed and locked with the car keys stored somewhere that we will be able to find them later (that part is important), making it through the doorway of the restaurant (I now officially LOVE doors that open automatically), into the restaurant amid stares and points only to have to turn around due to a lack of seating and load everybody back up! Just thinking about that makes me sweat. So anyway, the scoper-outer (typically that's me!) will just go inside to check it out to make sure we can make it work. In our limited experience, it's pretty rare to have 3 available high chairs. So the scoper-outer will snag any and all available high chairs and take them to a table that seems to be the best option and rearrange the regular chairs to make room for the high chairs. The scoper-out will then go back outside to give the other adult(s) the green light and the unloading process begins. Meanwhile, we are hoping that no one inside is rearranging or taking our high chairs from the spot the scoper-outer has arranged. On Saturday we were glad to have MaSha with us so no strollers were needed. Everyone grabbed a toddler, we got the diaper bag, we got 1 travel high chair (we brought all three, just in case no high chairs were available but we were able to nab 2 high chairs from the restaurant), we grabbed the bag that has the placemats and bibs and scooped my purse and went inside. I made the mistake of getting the snack cup with goldfish out to let the boys have something to eat while we were waiting for the food. As it turns out, they wanted the goldfish exclusively for lunch, and started crying when I tried to take the snack cup away. They definitely also made a mess on the floor, but we tried out best to pick up the big pieces before we left.

He liked the fries!

We put on his shades after lunch ;)

We've only been out to eat with them a handful of times, which sounds crazy considering they're 18 months old, but it's kind of intimidating. I'm glad that we do it though because each time we go, we will get a little more comfortable with it and get our routine down a little better.

In addition to taking them out to eat, I just love getting out and doing things outside the house with them. I know it's great for their socialization. I don't want them cooped up in the house all the time. We've gotten better about taking them out to do something at least once during the weekend, even if it's just to run a quick errand. One of the challenges is working around the schedule. Between meals, snacks and naps, there is just not a long block of time throughout the day to go do stuff. I realize that snacks/meals can be consumed "on the go" but it's extra work to pack all the bibs, placemats and travel high chairs (again, in case there aren't enough high chairs wherever we are) plus food for Ryan if I think we won't have a good option for him wherever we are since he's not quite eating anything and everything yet. It's just a lot of work. Period. BUT, we're trying and putting the effort into it. It's getting easier now that we have the option to kind of skip the morning nap and just let them snooze in the car for a few minutes if they're tired.

The sunshine and warmth on Saturday were just awesome. It finally feels like spring is coming! Doesn't everyone get tired of winter?!?! Anyway, after we got the boys down on Saturday night, Thomas made us a little fire in our fire pit in the backyard. Confession: the sun felt amazing during the day, but the night was still pretty chilly. I didn't last long outside, even with the fire! What can I say??? I'm cold natured! Regardless, the time that Thomas and I spent outside together was really, really nice.

My man working on the fire

 

You'd think the red wine would have helped with the cold of the night...
but it didn't. Womp womp.

Our awesome little fire!