On Louisville 2015

This was our third summer in a row visiting one of our favorite families in Louisville, KY. The boys honestly had the BEST behavior in the car on that leg of our journey. I did not have a single issue with either of them for the entire 11.5 hours. Amazing!

Sarah is always so good at making us feel super comfortable and she also takes us out to see places around the city. Just like the past few times, we had the perfect balance of relaxing and going on adventures. I had been super excited to eat at Tom + Chee (a grilled cheese sandwich restaurant that started in Louisville), so we made it there one of our first days. Their sandwiches are DELICIOUS!

We spent some time hanging out at Evan's house, playing Nerf battles in the basement (the boys' favorite thing to do), swinging in the backyard, watching PAW Patrol and riding scooters.

Sammy and I were having a snuggly moment alone on the couch and he asked me to make a creepy face. :)

On a rainy day, we headed to the science museum. It was AWESOME! The boys were in heaven. We saw a super cute movie in the IMAX theater and then explored the rest of the museum. This giant bubble maker was fun!

Sammy got some snuggle time with Sarah! So cute.

We made it back to a park the boys had enjoyed last year. Elijah was on top of the world.. er, a pyramid..

Before the park we took a 6-person bike ride on trails along the river. Eric was able to join us for this! He had been working the majority of the time we were there, so we were all excited to spend some time with him. The bike ride was an adventure! It was a lot of work, but so much fun (thank you, Eric, for doing most of the work)!

We squeezed in the Minions movie and we all thought it was adorable!

Here are all the boys! I love this picture. Maybe one of these years Dan's face will be included.. I'd love that!

Our time in Louisville was perfect. We can't wait till next year!

On tattoos and turning 40

A few months ago I shared with Sarah (my amazing heart mama friend who hosted us in Kentucky) that I would be turning 40 this month. She asked if I would be interested in getting a tattoo with her while we were in KY to commemorate the big birthday. Um, YES! She had an awesome idea for hers, so I began pondering what I wanted to get.

I don't think it's any secret that I spend a lot of my time and energy worrying about our oldest boy. Since Elijah has been born, I have been given a handful of promises that I need to constantly remind myself about. I KNOW that everything is going to be ok.. Elijah assured me of that the day he was born, the first time I saw him, through unspoken words. I looked at him and I knew. His dark eyes told me, "It's going to be ok, Mama!" I have also been given this promise through a few dreams which I have cherished every day since I had them. He is going to be ok. We are going to be ok.

But I am human and sometimes I get caught up in fear and consumed with worry. I shake myself and say, "The promises! Remember the promises!" It is sooo hard sometimes. I have always had the thought that I should tuck a piece of paper with a few of my favorite Bible verses in my pocket every single day. At first I thought I would get Hebrews 11:1 as a tattoo, as this is one of my go-to faith verses. Then I had an idea.

I searched through my photos and found a picture I had taken of Elijah's heart monitor minutes into his recovery after open heart surgery #2 (the big one). I traced his heartbeat from the monitor and and added a cross at the end. It's my reminder of Elijah's strength and steadfastness, combined with my faith in the promises God has given to me/us that we are going to survive this journey! I chose to put it in a place where I can see it often, and only a few weeks after having it I can say that it has already helped me. I LOVE IT.

A few people have said to me, "But what about a Sammy tattoo?!" And I reply with, "God gave me a natural Sammy tattoo!" It's true! Sammy and I have strangely similar (and very unique) birthmarks and I love this so much. Mine is on the side of my knee and Sammy's is on the side of his elbow. As a kid, I hated my birthmark, but now I LOVE it. It's another little special connection I have with my awesome Sammy Jammy. (Sammy's is on the left and mine is on the right.)

My boys have given me a three-day birthday extravaganza, involving time with the little boys, time alone, time with just Dan and time with all of my boys. Every moment has been filled with tons of love. My boys are the best! Today the four of us went to Valleyfair and had such a fun time. I have loved the past few days and even though 40 seems a little bit scary, I'm ready to tackle it. The decade of forty is going to be AWESOME.

On Straterra (month 1)

Maybe it's all of the driving I've been doing. I have had lots of time to ponder and I've pondered a lot. I'm thinking I should drive around the Cities for an hour every day just so I force myself to take a break and think! I have a handful of topics I'd like to explore through writing. Somehow writing helps me sort things out.

First topic...Straterra for anxiety for Elijah (month 1)!

Straterra is typically an ADHD med, but can also be used to treat anxiety. Since we have tried a handful of "true" anxiety meds with no success, Dr. M thought this would be a good "family" to explore. I was hesitant because of E's history with having adverse reactions to meds. June was a rough month behaviorally...really rough at times. We were kind of at the end of our ropes and felt like we were becoming stretched again (almost to the point we were at this past winter) and we were doing everything humanly possible to make Elijah happy/rested/peaceful, but to no avail. None of us were sleeping and we were all feeling anxious and impatient, so we decided to give these new meds a try.

Within 24 hours of giving Elijah Straterra we noticed a significant change for the better. His behavior was WAY improved. He was handling stress better, wasn't as agitated with little things and was obeying without a fight when we asked him to complete tasks. After almost a week on 10 mg, things weren't AS good. Still better, but not as good as those first few days. I called Dr. M and he suggested upping the dose to 20 mg. This coincided with the dawn of our road trip, which worried me, but I did it anyway. After a few days on the new dose, Elijah was seeming more agitated and he was also complaining of arm/shoulder/muscle pains. I consulted with Dr. M again and he suggested going back down to 10 mg. Sometimes it takes kids a while to adjust, he said.

We went back down to the low dosage and really, ever since he has been MOSTLY even-keeled. We have our episodes for sure (and when they happen my head usually spins), but they are SO much less extreme and they happen WAY less often. It has to be the meds.

I believe that without the meds, this road trip would not have been as happy/successful. We visited the same exact people on last year's trip and all of them told me that Elijah was much much much different this year (for the better). 

Before Straterra, one night of poor sleep put Elijah (and therefore the rest of us) out for an entire week. He does still have poor nights of sleep, and the next day is still rough behaviorally. But now, he rebounds much more quickly. The day after a poor night of sleep stinks, but the next day he is back to his happy self. Yesterday was ROUGH on our ride home because he didn't sleep well the night before. He got a decent night of sleep last night, and today was...AWESOME! Aside from potty talk, I did not have to correct a single thing ALL. DAY. LONG. That is a miracle!

He has also been much more affectionate with me since starting these meds. He wants to be physically close to me a lot...hugging, snuggling, talking about how much we love each other, etc. This is how things used to be back when he was, ohhh, three! His desire to be close to me has strengthened our bond, which has sadly negatively affected my relationship with Sammy. He sees this new change and acts out. I'm hoping he will adjust and our bond will grow again.

On good days like today, Elijah's patience with Sammy is stellar. Before meds, when Sam upset him, he would either head butt him or scream at him...or both. Today after Sam yanked a toy out of his hands I heard E patiently say, "Do you want that toy? How long will you have it?" !!!

From what I've read, Straterra (just like any med) does different things for different people. Whatever this medication does to Elijah's brain seems to be very good. Side effects are minimal at this dose. We may eventually want to increase the dosage again, but for now things are good. I am so happy I stepped out into the scary unknown and gave it a try.

To be continued! Pray with us for continued GOODness! 

I have THREE more hours in my thirties! Tomorrow is a big one. I think I'll handle it well but for three more hours I will wonder about it possibly being tough. We'll see! Thanks for peeking in!

Back from Summer 2015 road trip!

The boys and I are home! We drove 11.5 hours from Louisville today. We made two QUICK stops and we were so happy to be home. We hugged Dan a bunch and the boys ran around and released pent-up energy. We had such a memorable trip, both in Kentucky and North Carolina. I have SO MUCH to report.. about things we did and memories we made and also about things I have realized about Elijah in the past two weeks. 

In a nutshell.. We miss my dad and stepmom and the Karrs so much. We made some unforgettable memories! Elijah, Sammy and I are feeling sad tonight but also happy to be reunited with Dan and to sleep in our own beds.

The boys and Gramps dressed up as cows our first morning in Charlotte to get a free breakfast from Chick-Fil-A. Aren't they cute?!

We have been continuing on a low dose of Straterra for Elijah's anxiety and thankfully, he is still responding well. Overall, he did SO great on vacation. We had a few incidents but nothing catastrophic. While we were at my dad's, E slept in a very dark and cozy walk-in closet and I think that helped him get a few great nights of sleep in a row. Depending on how the next few nights go, I may think about putting a bed together in our closet. Anything to help!

More later! Must sleep!

Medication roller coaster and impending road trip!

The past week has been an interesting one. Elijah went from really struggling to being his super-sweet and kind little self (thank you, meds) and gradually back to struggling yesterday and today. As Dr. M suggested, we increased the dosage of meds today.  

In standard fashion, we're living on the edge here in the Porta family...testing the waters with medication before and during a big vacation. The little boys and I leave for Kentucky bright and early tomorrow morning. Sammy was especially excited today and kept asking why we can't leave for our road trip NOW?!

We decided to keep both boys up for fireworks this year. It's always a debate. Keeping Elijah up that late usually sets him back for a solid week. After only getting 5-6 hours of sleep Saturday night, he was very tired on Sunday but held himself together SO well, considering. It was kind of incredible, actually! It was fun to experience our first true 4th of July fireworks together as a family, but Elijah didn't even seem to enjoy it very much. The noise made him super anxious and he asked during the entire show when we could leave. The boys DID love the color wands that Grandma bought for them! Lucky boys.

The medication we have been giving to Elijah, for those who are curious, is Strattera (atomoxetine). Typically it is given to help with ADD/ADHD, but it can also help with anxiety. A few days into giving it to Elijah, I realized that I had not officially cleared it with Dr. G (cardiologist). He knows E's heart function better than anyone, so I always like to hear straight from him that any med is going to be ok for his heart. It took him a while to get back, so in the meantime I very stupidly googled "straterra and children with congenital heart disease." Please don't google that! UGH! I hate google sometimes and this is the reason I haven't done that since Elijah was a baby. The things I read were horrifying! We called Dr. G again to confirm whether or not we should continue this med. Everything is good. NO more googling medical concerns. EVER. Again. Find trusted doctors and TRUST THEM, people!

I don't know if today's dosage increase will be a good or bad thing, but we will find out...on the road...in the next day or so. Please pray with us that it is good! I want my boys to always feel peaceful and happy and rested.

We will be on the road for 10-11 hours tomorrow and we'll spend 4 full days with our favorite heart family who lives in Louisville. We LOVE the Karrs and look forward to spending time with them every summer. Then we'll drive onto Charlotte where we will spend a full week with my dad and stepmom. Eeeeek! Super excited! PLEASE, if it is on your heart, pray for Elijah's meds to work and for our trip to go smoothly. THANK YOU!

HOPE!

Today was another good day! For the second day in a row, the evening hours were peaceful. I have not described our evening hours as "peaceful" in a very very long time. Could it be? Could this medication be helping? We are sooo so hopeful.

I've been super aware today, mentally noting every little thing about Elijah's behavior. Maybe these are things I would have just overlooked on an ordinary day, but.. I noticed some differences today (in addition to the attitude improvement and PEACE). Despite looking tired (yawning a ton), E never looked groggy or glassy-eyed. Usually when he is tired, he also has a zoned-out look and his eyes glaze over and he shuts down.

Today he also seemed to be MUCH more aware of his surroundings. On the way to an appointment this morning, he looked out his window and said, "LOOK! There's Valleyfair over there and LOOK how green those trees are! And there's the river!" On the way back home I noticed that he was craning his neck to look through the front window of the car. I asked what he was looking at and he said, "Weird! It looks like there are puddles in the road, but then they disappear!" These are things that I don't think he would normally observe, especially when tired.

We have regressed a bit with night-time pottying but we are still getting up multiple times/night, so he is definitely tired. If behavior is as good as this when he is tired, I pray that it can only improve.

There were many times tonight when I braced myself, ready for the usual showdown. When it didn't happen, I almost didn't know what to do with myself! I'm cautiously thinking of what I might be able to do with all of this extra energy!

Hopeful hopeful hopeful!

Carefully hopeful

Today was...uhhm, AWESOME! I noticed some major positive differences in Elijah today and I can't help but think this new medication might be helping. Dan and I are feeling cautiously hopeful. PLEASE pray with us that this med will help out our precious oldest boy and his family!

I'll give an example from the day..

We were driving home from Elijah's OT visit. Elijah typically earns a small toy at the end of each session if he has a good attitude. Today he picked out a figurine from the movie Home, which both boys loved. E was playing with the toy in the car and Sammy swiped it right out of his hands. I clenched up because 99% of the time, Elijah will respond to something like this with either a raised fist, head-butting, very harsh words...or all of the above. I turned my rear-view mirror toward him immediately in anticipation and I was SHOCKED at what I saw!

Elijah calmly said, "Sammy! You took my toy! Mommy...will you please help me figure this out?!" Uhhh....WHAT?! I talked them through it and gave Elijah huge high-fives and praise. Wow! 

The entire day was filled with scenarios like this. I have been praying all day that this is not a coincidence. Please, God! Please pray with us. We are very cautiously hopeful tonight!