Tuesday, April 29, 2014

Neuropsych visit

I am still working down in Cannon Falls for a few more days, so life seems a bit nuts in general right now. Working away from home in addition to working from home in addition to managing family stuff....sigh. I often wonder, What are we doing to ourselves?! Dan and I have created such an unconventional and strange life for our family. We have found a way to have at least one of us at home most of the time with our boys, which is so incredibly awesome. It has been our ultimate goal to have at least one of us here for the boys while they are little. But we work so hard for it, and some seasons can be pretty challenging (cue now). Dan leaves for a ten-day DC trip on Thursday. Then skydiving season will be in full swing. Then wedding season starts. Then then then... We'll all be back together as a family in October! :)

I brought Elijah to his appointment with his new neuropsychologist today. The newest new doc! Do you have any guesses about how awesome he was? Elijah has a record for having only the BEST doctors, and this one was totally top-notch, right along with the others. Perhaps I should start another side business involving connecting parents with the most excellent pediatric medical care in the Twin Cities.

Dr. M (#2..this is our second Dr. M) was seriously awesome. Compassionate, understanding, kind and super smart. He took as much time as necessary (3+ hours) to fully understand Elijah. As he explained to me, he wanted to get inside Elijah's head and understand how he operates. He took an entire hour and a half with just him...asking questions and performing memory, attention and academic "tests." Then he talked to me one-on-one for over an hour.

He needs to sort through his results before giving me a concrete report, but he shared some preliminary thoughts with me. First of all, he hates labels (I love this). I shared with him that some people in the school system and in the medical world have mentioned labels such as EBD, ADD, ADHD and autism. His response went something like this: ADD? Autism? Elijah doesn't have either and should not be labeled as such. Does he have qualities from these diagnoses? YES. He most definitely has attention issues and social issues. Do these issues stem from ADD and autism? NO, most likely not. [insert him holding up E's rap sheet of medical procedures] THIS is likely to blame, and for good reason. Major things happen in a person's body and mind when they endure major operations or health issues. Take that times a hundred in Elijah's case and there are going to be things that are seriously delayed. This is not a case where we want to put a label on a child, unless the label is....JUST BEING ELIJAH! This is who Elijah is, and everyone who interacts with him needs to know what he has endured in order to help their understanding of him. Without a desire to understand his background, he wouldn't make sense.

I so appreciate this. Like Dr. M#1, he gets it. He totally understands. He sees Elijah's arm flapping and repetitive talking and doesn't make judgments or place mental labels. He sees his history and he understands that this is just who our boy is!

He agreed that his Deaf and Hard of Hearing label at school is necessary for now, but that we need to get him under a different label eventually (asap). He is not currently getting the support he needs with his social deficiencies. This is something at the top of our list going forward. Dr. M feels that his social immaturity stems from a slow development and immaturity, which inevitably has led to anxiety. His initial thoughts are that anxiety (and sleep issues) are at the root of most of his challenges.

I have an appointment scheduled for May 12th to go over final results, so we'll receive further thoughts/results at that point. Elijah has never fallen into any specific category, but has always displayed characteristics of various "disorders." I think we are learning that he is just....Elijah! He is just who he is and we love him for it. I'm feeling super thankful for another incredible, smart doctor who was put in our path! By the way, this amazing Dr. M is more than willing to COME TO IEP MEETINGS! I love him. Elijah....no, all of us...are so blessed.

Thanks for checking in! Tomorrow I'll be going on a rainy and cold field trip with E to a nature center. We're excited!

Thursday, April 24, 2014

New friends

I hope you all had a wonderful Easter! We had a nice day. We celebrated Jesus' resurrection at our wonderful Celebration Church, followed by dinner, an egg hunt and time with cousins at Grandma's house. Here was my favorite photo of the day. :)

Things have kind of been a blur since that warm sunny day last weekend. I have been working in Cannon Falls, which means a lot of time in the car and away from home. I had a nasty sickness yesterday that wiped me out beyond my already super-tired weariness that has been standard for me lately. Since Tuesday night, I've been trying to be a little gentler on myself...early bedtimes, hydration, more quality boy time and less unnecessary computer time. Working away from home makes me VERY appreciative of the time I have with my boys. I'm excited for the weekend!

Elijah has had a great week all around. He has had four "great" days at school and he is so excited about his new friendship with the cute little girl from his class who lives a few houses down from us. He's been over to her house a few times in the past week. It's a little bit tricky since he is still learning safety rules of sidewalks/roads/driveways. I don't feel totally comfortable just letting him run wild around the neighborhood, especially when Sammy insists on following his big bro everywhere. It's crazy, as this is totally new territory for all of us. I want Elijah and Sammy to form friendships, but can't they do it in our safe little yard? :) The other night I was trying to keep an eye on both boys as they cruised around in little cars with their friends. They were staying off the road and within the block we were on, but at times they would drive into the back grassy area where I couldn't see them. The one little boy who Sammy had been riding with came around the corner...without Sammy. I asked where he was and the little boy said, "Oh, I dropped him off way over there!" Cue me sprinting across the back lawn like a mad woman. I found my sweet little Sammy standing in the grass, sadly crying out, "WHERE'S MY MOMMY?!?!" A little boy from across the street had seen him crying and had come to comfort him. :( I scooped him up and vowed to not let him out of my sight again. This is stressful! But it is so nice to see the boys socializing!

This weekend will be one of our last together at home as a family in possibly a very long time, so I'm hoping to make the most of it. I hope you are all having a great week! Thanks for checking in.

Friday, April 18, 2014

Sunglasses and a friend!

A really quick post tonight! I was taking a bath tonight and Sammy peeked his head in to say good-night. He had sunglasses on. Of course he did. He looked at me straight-faced for three seconds and then: "G'night, Mommy," and shut the door abruptly. I laughed for an entire minute.

The boys and I colored Easter eggs tonight (pics to come!). In the middle of dunking eggs into orange and pink dye, there was a knock at the door. It was Elijah's little friend from his class who lives down the street. She is the CUTEST and kindest little thing, and she had stopped by a couple times last week, as well. Elijah was BEYOND EXCITED (times a million) that she asked him to go to the park with her. There was an "older" girl going along to watch them, but I felt weird as I watched him scoot away from me on his little blue trike. Dan and Sammy followed just to make sure the situation was safe. Phew...that made my tummy feel much more settled.

This sweet little girl is so precious...to Elijah and to his mama. It is the first peer....EVER...to show interest in wanting to spend time with him. He has been so incredibly excited and happy about her interest in him. I keep praying it will continue. And that his social skills will continue to improve. Thank you, God, for answered prayers!

Wishing you all a great Easter weekend! 

Thursday, April 17, 2014


Six years ago, two days after open heart surgery #2, Elijah was getting love from this amazing nurse! She had also cared for him after his first heart surgery when he was 3 months old. She is one of the INCREDIBLE ones. We will always remember her as one of the most loving and caring nurses we've ever had.

Tuesday, April 15, 2014

Happy heart day!

Oh my gosh! I cannot believe I forgot to write about this earlier. I thought I would never forget this day. But I did. Today is the sixth anniversary of Elijah's second open heart surgery (the big one). It was one of the most significant days of his entire life. We are thankful for his amazing surgeon and cardiologist and of course for the plan that Jesus has for his life. We are so grateful for you, Elijah! We love you so much and Sammy we love you so much, too! We are beyond grateful for the amazing medical care E has received. Happy 6th heart day!

Putting out fires

Dan and I burned our dinner to a crisp this evening. We put salmon on the grill, Dan ran out to the store quick and I got dinner ready for the boys. A few minutes later somebody was furiously pounding on our door. I turned around to see flames flying out the back of our grill. Yikes! The kind lady potentially saved our home from burning down, although I wasn't super impressed with the lecture. We've had this grill for a long time, so we are blaming its old age for the random fire. The flames were stretching so far that they warped our siding. Sigh. 

Aside from that, we have had a great past week! Elijah is sleeping later in the mornings, which is so super awesome. His behavior at home has not improved by a whole lot, so we are hoping a slight med dosage increase will help with this. Behavior at school has been mostly great. Today was a "so-so" day, which I'll happily take.

The little boys and I took our second trip to the library tonight. Sammy was VERY upset about having to say good-bye to his library book. He does not like change. He came around, though, and picked out a fun new book about the different seasons. Elijah went the fiction route this week and picked out a silly book that we are looking forward to reading at bedtime tonight.

I wanted to share this photo of Elijah with his kindergarten teacher's sweet, adorable little girl. It was my privilege to take her 1-year photos a couple weeks ago. We love Mrs. B so very much and miss having her as his teacher this year. She will always have a very special place in our hearts. I prayed for her since Elijah was a tiny baby, and I remember meeting her for the first time and just KNOWING she was meant to be E's teacher. We love her and we love her beautiful little girl! Elijah was my photo assistant for this session and did a great job!

I had a work opportunity come up for the next 10ish days, so I'll be super busy with that. Dan will be manning the crazy Porta fort for a while. Thanks for checking in! Have a great week!

Wednesday, April 9, 2014

Week of words

The little boys and I are having a fun week! We miss Dan, but we are making the most of our quality time together in this BEAUTIFUL weather (finally!). On the drive home from the airport the other day, I looked into the backseat to see Sammy's head in his hands. I asked if he was ok and he sadly said, "Yeeeaaah. Just finkin' about Daddy." It sounds like Dan is having a great time showing kids around DC, so we are excited to hear all about the trip!

Elijah has been sooo interested in reading lately. He has always loved reading, but lately even more than ever. He gets up in the morning and starts reading right away and he reads for at least 20 minutes before bed every night. It's great! I suggested we take a trip to the library (our first ever, sadly), and the boys were super excited! Sammy picked out a silly book that he has carried around with him just about everywhere, and Elijah picked out a book about the caterpillar-butterfly transformation. He told me at the library in a hushed voice, "Mom! I love non-fiction books and learning about REAL things!" Yes! I love it! He has read the book front to back at least five times. He can tell you about every little part of a butterfly's development.

I chatted with Elijah's sleep doctor yesterday and she told me to increase the dose of his meds by a teeny tiny bit more. I THINK he has been sleeping a lot later in the mornings! I think. I'm pretty sure. This morning I didn't hear him until the 5:00 hour, which is a HUGE step in the right direction. So far, his full days back at school have all been in the "great" behavior category. Yay!

And he has started showing much more interest in his peers and what they think of him, which is awesome. There is one little girl who is not in his class, but who he sees at recess every day. He is drawn to her, and keeps approaching her out of a desire to be with and play with her. At first he told me that he was asking her if she would marry him, which resulted her in running the other way. :) Then he told me that he was showing her his "bunny dance." Oh boy. I have started coaching him a bit, telling him that if he really wants her attention that he needs to ask her questions that she would enjoy answering...and to say them clearly and loudly. He was proud to tell me yesterday that he had clearly and loudly asked her to play with him. But she still ran away. Today he said to me, "Mom, I don't think she wants to be my friend. I think she thinks I'm a preschooler." :( I am so excited for the day when he finds a little friend who loves and appreciates him and wants to spend time with him. In the meantime, I will continue to do social coaching! And I am SO thankful that he is showing genuine interest in wanting peer acceptance. This is huge! It's been a long time coming, and it's a big step for him.

Sammy gets to spend a few hours at daycare tomorrow with his sweet little friends so I can get a bit of work done. It is always amusing trying to work with him at home. He sits on my lap as I type and tells me story after story, while driving toy trains up and down my arms and legs. I love that silly boy!

Wishing you all a wonderful rest of your week! Thanks for checking in!

Monday, April 7, 2014

Cardiology check-up

Today was Elijah's first day back at school after a long spring break. He had an "awesome" day! Wooo! We picked him up a bit early and scooted downtown for his bi-yearly cardiology visit. My tummy always feels a bit "off" on cardio-visit days, and today was no exception. All was well, though. In fact, everything looked GREAT! Dr. G had told us last fall to expect another heart cath this summer. Well, guess what! His heart function and pressures looked great (for him) today, so no heart cath for another 6-9 months! This will be the longest stretch between heart caths EVER!

We asked Dr. G about a timeframe for the next valve replacement (open heart), and he said it would be a minimum of two years. Maybe more. Elijah has some big growing years ahead of him so the faster he grows, the sooner the next big surgery will need to happen. We're thinking 2016 might be The Year.

I know E's sleep doctor has conferred with Dr. G about the new meds he is taking to help improve sleep, but I couldn't help but ask him about the meds myself. He had ZERO worries about these meds adversely affecting his heart function in any way. Phew! It always feels good to get the Dr. G endorsement firsthand. Love him.

By the way, we have been verrrrry gradually increasing Elijah's sleep meds over the past 10ish days and we really have no idea if they are working. I think he is sleeping a bit later in the mornings, but his behavior at home hasn't been ideal. We will continue with the meds for a bit longer, increasing the dosage by a bit, and see how things go. THANK YOU to the commenter who suggested the baby video monitor to keep an eye on his sleeping during the night. What a great idea! It's on my list for this week so I don't have to wonder for hours during the night whether he is asleep or wide awake.

Literally while we were at the doctor's office today I got a call from the neuropsychologist's office. They had received our paperwork and were ready to schedule an appointment. Yay! It is much sooner than I anticipated, so Elijah will have a FIVE-HOUR evaluation done on April 29th. I know this will provide us with even more valuable insight into how Elijah works and thinks. I'm genuinely giddy about this visit, whatever "news" we receive. The puzzle pieces keep clicking into place!

Dan leaves for a five-day work trip tomorrow, so the boys and I will be flying solo for a while! Our agenda includes: a bit of daycare time for Sammy so I can get some work done (he is NOT happy about this), a visit to the library (Elijah is very interested in Abraham Lincoln lately), trips to the park, pizza-movie night, GREAT days at school and lots of boy-Mama time! Please pray Dan's trip goes well and that the boys and I have a healthy, fun week. Wishing you all an incredible week, too!

Friday, April 4, 2014

Out of the mouths of the silly Porta boys

A couple Porta boy funnies to end your day...

Elijah asked what would happen if somebody stole a valued possession and I did my best to explain the concept of insurance to him. I explained how insurance can sometimes cover the costs for stolen items. He gave me a super quizzical look and said, "Uhhhhh...that doesn't make any sense, Mom. Just find those mean people and punch them!" 

Dan: Sammy, are you going to say good-night to Mommy?
Sammy: Yes! She is the prettiest girl in real life!

Thursday, April 3, 2014

On the road with heart -- part 3

I FINALLY got the rest of our road trip down from last summer. Better late than never, right?

Read about the first part of our trip here!
Read about the second part of our trip here!

STOP 9 – Birmingham, Alabama
STATES DRIVEN THROUGH: Minnesota, Wisconsin, Illinois, Indiana, Ohio, West Virginia, Kentucky, Tennessee, Alabama (9 total)
PEOPLE VISITED: Bilal (HEART KID #8), Mina, Zakir, Safa, Hamza

We arrived in Birmingham in the late afternoon and pulled up to Mina and Zakir’s home and literally as I went to put the car in park, I heard a loud WHOOSH coming from under the hood. Then smoke began billowing out. I got the boys out of the car, and we all stood on their lawn staring at the sad scene. Mina came out to greet us, and the first thing I said to her was something like, “I think my car just exploded. Nice to meet you!”

I don’t think I need to explain the timeliness of this incident. This was one of the many times that I knew God’s hand was literally directly on all of us during the trip. If my car was going to “explode,” there could not have been a better place and time for it to happen.

Mina kindly contacted a trusted and nearby mechanic the following morning who was able to squeeze me in. Thankfully and ironically, I had planned for us to spend that entire day in Birmingham so our schedule was not set back at all. My car needed a new radiator, which was unexpected but easily accomplished and at a reasonable rate. Phew!

After we arrived, and after the “explosion,” I watched the boys play with Bilal and his neighbor friend for a while outside. This was the first point in the trip when I was finding it difficult to be “on.” Being in a situation where so many different people are involved, tackling any social situation (big groups, small groups, one on one, interacting with big kids and little kids, etc) was necessary. And up until this point, I felt like I had done a good job. I am a true introvert. I love being around people and interacting and socializing, but it is very draining for me. After ten days of being at the top of my social game, I was socially exhausted. I stood in the driveway watching the boys run around and I wondered if I could keep it up. I think I managed to pull it off, but retreated to bed early that night and socially, emotionally and physically crashed.

Mina and I had met through our blogs a few years previously. I had fallen in love with her family on my computer screen, but when I met them in person I was even more in love. They are such a sweet, close family. All three kids are exceptionally smart, personable and kind. I was very impressed with their family bond and their kindness toward one another and others. I tucked a few of Mina’s parenting tidbits away for when we get to the teenage years.

The following day we went to the Birmingham Zoo, which was a really fun place. We were able to get right up next to the giraffes and feed them leaves. We threw apples to the elephants so they could have a snack. We watched a bird show and we walked through the dinosaur exhibit. We even took a train ride through the zoo. It was a hot day, but everyone seemed to handle it well. Mina and her crew were especially tough since they were fasting for Ramadan.  The boys also rode on the carousel a handful of times.

On the way home from the zoo, Mina sneakily ran into a CVS to purchase an ice-cold sweet tea for me. I had told her earlier that I was not familiar with the popular southern beverage. It was extremely kind and thoughtful of her to think to do that for me. It was delicious, by the way, especially after a hot day at the zoo. I guzzled it down in sixty seconds.

That evening the boys were all finally warming up to one another and playing more easily together. This is the night that will go down in history as the night Elijah learned to pump his legs and swing all by himself! We cheered him on for quite a while. I was a proud mama! Mina and I had a few moments in the evening to get to know each other better. She is an incredible mother and woman and I am happy to call her a friend.

During the hours that their family was able to eat, they made some things I had never tried before. I didn’t want to steal too much of their food since they had waited for it all day, but I did want to give everything a try. I will never forget Mina’s Rainbow Rice and also her Shrimp Curry. I should also mention that the boys and I never went hungry while we were there. Mina kindly fixed us food throughout the day, even despite her own fasting. Elijah and Sammy loved her milk shakes!

That evening we picked up my car with the sparkly new radiator and we went to bed reasonably early again. We were up and out the door early in the morning, as we were anticipating our longest stretch of road yet.

The car ran on the cold side for the entire trip, which gave me relief. The boys did great in the car, minus one bit of vomit drama. Elijah has a history of getting car sick, so I was prepared to hand back one of the “puke bags” that we had accumulated from hospital visits over the years and that I had within reaching distance in the front seat.

Almost immediately after crossing the border into Mississippi, Elijah told me that his tummy was feeling funny. I whipped the puke bag back to him with lightning speed, and thankfully it all went in the right place. Then he handed the bag back to me. I had not yet in my lifetime had the experience of driving while trying not to spill a bag filled with vomit. I took the next possible exit and pulled onto a frontage road. As I was emptying the bag out on the side of the road, I saw a person quickly approaching me from the corner of my eye. Then the yelling began. “WHAT ARE YOU POURING ONTO MY LAND?!” I looked up to see an angry toothless man running toward me. I quickly rinsed the bag out with a bottle of water and hopped back in the car. I yelled out the window, “Just a little vomit, sir. Sorry!” And we were on our way. Thankfully, that was Elijah’s only bout of carsickness for that leg of the trip. He was saving it all up for a later leg that will forever go down in history.

Stretching our legs at a gas station somewhere in Mississippi

We made it through Mississippi and into Louisiana without further incident. Toward the end of the drive I was really ready to get out of the car. Central Louisiana was unique and interesting. Every little town we drove through made me feel like we were in another world.

STOP 10 – Marksville, Louisiana
STATES DRIVEN THROUGH: Minnesota, Wisconsin, Illinois, Indiana, Ohio, West Virginia, Kentucky, Tennessee, Alabama, Mississippi, Louisiana (11 total)
PEOPLE VISITED: Logan (HEART KID #9), Kayla, Josh, Isaac, Kayla’s parents and aunt, Josh’s parents

We arrived at the beautiful home of Kayla and Josh in the late afternoon. Kayla oozes with southern kindness and has just the cutest accent I have ever heard in my entire life. We instantly felt comfortable in their home. Logan scooped Elijah right up and escorted him to his very fun bedroom. He loved showing my boys his Teenage Mutant Ninja Turtle toys. The boys also compared their Despicable Me toys that had been accumulated from McDonald’s over the previous weeks.

Elijah spotted their swimming pool in the back yard and of course was very eager to swim. We changed into our swimsuits quickly so we could get in the pool before dinner. I did not have the frame of mind to do swim prepping with Elijah. Maybe since the last few times had gone so well, I wasn’t quite on my toes. We got into the pool and watched Logan swim around like a fish. Elijah was the happiest kid on the planet in that given moment and that is NO exaggeration. Sammy got his feet wet on the steps right away, which was impressive for him.

Ten minutes after getting in the pool, we spotted lightning in the distance. Oh no. I knew right away that bad things would follow, and not in the sky. I tried to calmly explain to Elijah that we needed to get out of the pool for safety reasons. I may as well have started speaking another language. Anything I said did not matter. 0% mattering. He was sad, disappointed, exhausted and not equipped to deal with a transition from fun total happiness to complete and utter disappointment. He lashed out at me with every trick he could think of. It was an awful ten minutes that I will sadly never forget. I understood his level of disappointment, but I could not wrap my head around the intensity of the behavior that was coming from my sweet boy. I was way past the point of being embarrassed. I was deeply troubled, and I still feel troubled about that ten-minute span of time, months after the fact.

Once things calmed down, we went out back to see their new puppy. We also got a peek at the teeny tiny newborn puppies. Sammy especially thought they were adorable. 

The boys got a fun ride on the four-wheeler with Josh, Logan, Isaac (Logan’s super cute little bro) and Kayla.

After playing on the swing set for a bit, we headed inside for dinner. By this time, Josh’s parents and Kayla’s parents, along with Kayla’s aunt, had arrived. Kayla’s dad had made a couple of his signature Louisiana-style dishes, and I was incredibly thankful for his efforts. On top of being thankful, I also had a very happy tummy. That was the best Jambalaya I have ever eaten, hands down. There were three types of meat in it and it had just the perfect amount of zing. Then there were the rolls. Those rolls were the softest rolls my lips have ever touched. I put plates together for both Sammy and Elijah knowing for certain the only thing they would eat would be the rolls. I was right. Elijah ate five of them and Sammy ate three. They were served with maple syrup for dipping and oh my goodness did my boys enjoy them!

Kayla and Josh’s parents were incredibly welcoming and kind. I am so happy that they were there and that we had the opportunity to visit with them. They are an incredible family and Logan is one amazing kiddo.

I got the boys in bed as quickly after dinner as I could. I was not thinking clearly when I decided to put Elijah to sleep in the bed that I would also be sleeping in. Looking back, that was definitely one of the more poignant what-in-the-world-was-I-thinking moments. After chatting with Kayla and Josh for a bit, I headed to bed myself.

It didn’t take long before realizing that this was not a good situation. At every other place we had slept previously, I had taken the time to set up Elijah’s sleep tent well before bedtime. Elijah is an early bird. Not even just an early bird, but a super early bird. Since the day he was born, he has slept past 6:30 only a handful of times. It does not matter what time he goes to bed at night. He is always up before the birds. This was one of my main concerns about the trip well before it happened. Add being in new, fun places to his early-birdness and you have some ridiculously early mornings. There were mornings on this journey when he was literally ready to start his day at 3:00. No joke. The sleep tent did help, I think. It blocked out some stimulation and kept him contained in the early morning hours when any little thing was a cue to wake up for the day.

I was so tired that night in Louisiana and there was no way on the planet I was going to get out of bed to put his tent together. Instead, I found my way to the living room and found two soft blankets. I stumbled back to the bedroom and situated myself on the floor next to the bed. It was not the best night of sleep, but it was better than getting steam-rolled all through the night. As usual, Elijah was up bright and early, ready to start his day. I handed him the iPad and told him to turn it down (a trick that saved me many times).

Kayla made the boys breakfast, and afterward we headed to Alexandria, Louisiana, where Josh works as a firefighter. He kindly gave us a tour of his fire station and he even gave the boys rides in a real fire truck! Both boys were excited to watch the water spray from the truck onto the pavement in front of us.

We had time to eat a quick lunch with Kayla, Logan and Isaac before making our way to Dallas. Kayla was so thoughtful, wanting us to get a good meal in our bellies before getting back on the road. There was a Cracker Barrel just down the road from the fire station, so we decided to go there. Based on the night of sleep we had just gotten, I had a gut feeling that a sit-down meal was not going to be good. Eh, it’ll be fine. We’ve survived this long, right?!

Even before we got seated, things were starting to unravel with my tired boys. I sensed a storm ahead. Kayla and I did our best to chat across the table while taming the monkeys. Our food arrived and I remember seeing and hearing blurs of awful behavior coming from both of my boys. Honestly, I didn’t blame them. I felt like screaming my tired head off, too. At one point Elijah was running around the table in circles and Sammy was standing in a corner screaming at the top of his lungs. We had hardly touched any of our food, but I knew we needed to leave.

This was the tiredest part of our trip, collectively. We. Were. Tired. Sleep tired and also tired to the core. I felt an explosion brewing inside of me as we left the restaurant and gave goodbye hugs to Kayla and her sweet boys.

I loaded the boys into the car, got in myself and had a freak-out session about the behavior in the restaurant. Even though I did not blame them one bit, I felt I was possibly teetering on the brink of sanity. Hence, the freak-out. Then, immediately, I felt horrible. I laid my head on the steering wheel and cried like a baby. “Mommy, don’t be sad!” came from the back seat. After a few minutes of this, I wiped up my tears and scooted onto the interstate. Literally 60 seconds later, both boys were sound asleep. They were tired.

We were traveling on interstate for that stretch, thankfully, so the steady hum of the road helped the boys sleep for a few solid hours. That gave me plenty of time to beat myself up about the way I had yelled at them back in Louisiana. Ugh. When they woke up, we were ready for a break. This was the first time on the trip that caffeine was suddenly an absolute necessity. I am not a coffee drinker, but I do indulge in the occasional Red Bull when times get tough. I quickly guzzled down a big ol’ RB and we were on our way to Dallas!

The rest of that stretch was uneventful until we entered Dallas. Suddenly there was a torrential downpour in heavy traffic. The roads became saturated so quickly that I began to worry they would flood and that we would have nowhere to go. I was legitimately afraid for about a solid hour as we made our way to tour next stop. We were really really excited to get to the Cooper house.

About ten miles away from their home, I noticed the Nevada license plate in front of us. I handed Elijah our license plate game and told him to check Nevada off the list. Then, wait! Is that… Is that the Rollers?! We had planned to arrive in Dallas the same day as the Roller family, but I had never expected to be literally directly behind them on the way there. What are the chances?

The Rollers are one of my absolute favorite heart families. We had met in person prior to this trip on a few separate occasions. They are an incredible family and they have endured so very much. Kathy and her boys are a constant inspiration to me. I sincerely love this family.

STOP 11 – Keller, Texas
STATES DRIVEN THROUGH: Minnesota, Wisconsin, Illinois, Indiana, Ohio, West Virginia, Kentucky, Tennessee, Alabama, Mississippi, Louisiana, Texas (12 total)
PEOPLE VISITED: Grace (HEART KID #10), Jennifer, Craig, Bennett, Maggie, Jennifer’s father and stepmother and mother and stepfather, Isaac (HEART KID #11), Kathy, Chris, Eli

We were so happy to arrive at Jennifer’s house! We hopped out of the car and shared giant, loving hugs. I had been wanting to meet Jennifer and her precious family for a very long time. This trip to her house was long overdue. The Rollers arrived at the same time, and many hugs were swapped. I had personally thought of Jennifer’s home as a safe haven all along the way (like Sarah’s back in Kentucky), so I was happy to be there and also happy to have four days in a single place.

That first night the Coopers grilled us burgers and we did a lot of chatting. I cannot explain how good it felt to watch our kids play together. Grace and Isaac have both been through so much medically, and I have prayed about them both countless times over the years.

I was reminded how much sweet Isaac loves his Yo Gabba Gabba. Every time a show would end, we would hear the cutest little, “OH-NOOO!” and he would search the room for another device and seek out help getting Gabba turned back on. Isaac is the biggest cuddle-bug, and I took every chance I could to snuggle with him. I seriously love that boy and his amazing mama.

Jennifer and Craig have a beautiful home and had plenty of space for all of us. Every inch of their home was straight out of a magazine. The décor and colors and literally everything was absolutely perfect and cute. The boys and I had a cute and comfortable room all to ourselves. We got situated and went to bed fairly early that first night.

One of the parts of their home that Elijah noticed immediately the night before was the pool in their back yard. The next morning he was itching to get his little body in the water. I had offered to take family photos for the Coopers as a small token of thanks for housing and feeding and loving us. That next morning we braved the heat and went to a beautiful park and got some photos taken. It was fun to have the one-on-one time with them at that point. Even though it felt like I’d met Jennifer a million times before, it felt amazing to see her and her family in the flesh. Elijah stayed back at the house with Kathy, but Sammy tagged along with us to the park since that made him the most comfortable.

When we left the park, we were sweaty messes. We stopped at Sonic and got the kids slushies for their efforts. By the way, the Cooper children are the perfect subjects for photos. All smiles all the time and totally cute and cooperative. I did not have many throw-aways from this session.

Elijah was bursting with excitement to get in the pool when we got back. So that is just what we did. We had plenty of talks about getting out with a good attitude when it was time to do so. He and I swam around a bit and then the lucky boy got one-on-one time with his own personal real-life swim teacher, Jennifer. She worked with him quite a bit over the course of the following days. When she first got her hands on him, he would not put his face in the water and he absolutely would not allow her to let go of him, even though he was wearing a floatie. By the end, he was willingly getting his face wet (this is so huge for him) and he would kick around the pool all by himself with a floatie on. 

He loved his swim-time with Kathy, too!

Sammy saw the fuss we made over Elijah and felt a little bit left out, I think. By day 2 or so, Jennifer gave him a little hands-on time, as well, and even he was doing his own kicks! He was so proud. “Mommy, watch me!” ..kick kick kick.. “Jennifer, watch me!” ..kick kick kick.. So cute.

It was during one of Elijah and Jennifer’s swim sessions when he started his little silly routine with her. They were calling each other silly names back and forth. The best one of all and the one that made us laugh the most was when he named her Shark Nostrils. We still refer to her as such!

After a bout of swimming one day, Elijah and Grace crashed in Jennifer's bed together. It was precious heart friend quiet time.

PEOPLE VISITED: Jakey (HEART KID #12), Cindy, Steph, Darryl

On Sunday evening, Jennifer’s father came over with his meat smoker and made us the most delicious smoked ribs and chicken. It was such an incredibly thoughtful gesture on his part and I was extremely thankful for his generosity, as smoking that much meat did not appear to be a quick or easy task. Jennifer’s mother came over, as well, bringing delicious food along with her. Our tummies were very happy that night! It was a great privilege to be able to chat with her parents and to understand more about who Jennifer is as a person.

The most exciting new people that we met that night were heart friend Jake and his family. I had been following Jake’s story through his mom Cindy’s Caringbridge site for a few years. They are just the sweetest family and it was so exciting to finally meet them all in person. Steph is Jake’s sister and I was so glad to meet her, too, since I had seen so many photos of her beauty over the years. I couldn’t get over how tall and beautiful she was! Cindy’s husband, Darryl, was so kind. He got a kick out of Sammy’s infatuation with the water dispenser on the Coopers’ fridge (this was something he became obsessed with at every stop). Sam would fill up a cup of water, take a sip and then pour the rest in the sink and say, “That water was old. I need some fresh stuff!” and repeat the process over and over. And over. And over.

The four days at the Cooper house were totally relaxing and perfect. A lot of it runs together in my head because it was a lot of the same – getting to know each other, watching the kids play and swimming.

One thing that stands out in my mind was our trip to the movie theater one hot afternoon (they were all hot). The kids had all been looking forward to seeing Despicable Me 2. We filled up a row in the theater and let the kids munch on popcorn while we all laughed at the evil purple minions. To this day, that is one of my boys' all-time favorite movies.


I knew I also wanted to squeeze in a visit with another heart friend who lived in the Dallas area, Micah. His mama, Samantha, and I had made a connection years ago and she was a major reason why I survived Elijah’s second open heart surgery. She was an amazing support for me during that time and I will never forget that. Samantha met Elijah, Sammy and I for lunch one of the days we were in Dallas and I was so happy this worked out. I was sad that her heart kiddo, Micah, was not able to join us, but we appreciated her effort to get together with us.

The next best thing to meeting Micah was posing with his cute pic! 

PEOPLE VISITED: Harrison (HEART KID #13), Tiffany, William

Another heart mom that I had connected with years prior through my blog was Tiffany. She and her family had lived in Minnesota when heart friend Harrison was a baby, but currently they live in Fort Worth, which is only a short drive from the Coopers. I thought it would be fun to introduce Tiffany and her boys to the gang, as they had never met before. Jennifer graciously offered to host them at her house, so they donned their swim gear and came on over one afternoon.

Harrison and Elijah have something pretty cool in common. Both boys have been operated on by the awesome Dr. M. Tiffany has been such a great support for me over the years, so it was really cool to finally meet her.

Her boys fit right in and splashed around in the Cooper pool and played video games with the rest of the kids. Harrison is one tough little guy. He has endured much and has such a sweet spirit.

Holding a gun while wearing pink, dangly earrings! Of course!

The Tuesday we were in Dallas was my 38th birthday, and my heart mama friends were so good to me that night. Jennifer had a fun evening planned for us, so I put Sammy to bed early (he would have freaked out seeing me leave) and had Elijah ready in his jammies. Cindy, Steph, Jennifer, Kathy and I started our night with pedicures! It was wonderful! Kathy and I were able to do some chatting while our toenails were prettied. While our toenails were being painted, the lady doing my pedicure said, “Would you like flower?!” I said, “Sure! Fun!” Who wouldn’t want a flower painted on their big toe, right? Kathy and Jennifer opted for the big toe flower, as well. They all turned out super cute. As Jennifer was paying the bill, the lady said to her, “Figh-dolluh extra for each flowuh!” Oh jeez, they didn’t tell us that. We joked for a long time about those figh-dolluh flowuhs. Which, by the way, stayed perfectly painted on my toes for THREE MONTHS. I’d say that was five dollars well spent!

After pedicures, we went out for seriously yummy Mexican food. I can’t even tell you what I ordered, but I remember that my tummy was very happy. I also ordered two beverages that aided in the happiness. I don’t remember what those were called either, but they sure were delicious!

When we got back to the Cooper house, my boys were soundly sleeping, as I expected them to be. I packed up our things because we would be heading out in the morning. It was sad, but it was time to head back toward home.

The stretch from Dallas to Omaha was our longest stretch of the entire journey and I had not been looking forward to this part. I was able to get the car packed up early and the boys loaded in their car seats with all kinds of books and activities surrounding them. It was very sad saying good-bye to our friends. I wanted to pack up the Coopers and the Rollers and take them all home with us. The winters in Minnesota aren’t that bad! Ha!

The drive out of Dallas was a sad one. The sadness was reflected by the weather, which was rainy and stormy. About an hour outside of Dallas I saw a black wall of clouds ahead and I started to get nervous. I called Dan and asked him to look at the radar. He told me we were driving directly into a very large storm. It was scary for a while and I considered pulling over and waiting for it to pass. But then I thought about the drive time we would lose. I knew we had somewhere around a 10- or 11-hour drive that day, so stopping unless absolutely necessary was not on my agenda.

We rode through the storm on the interstate and all was well. I was happy to get through it. I also found it strange that the only rain we encountered while driving on the entire trip was while going into Dallas and going out of Dallas.

The first nine hours of that leg were uneventful. I had the thought many times that it was a piece of cake. HAHAHA, said an inner voice! Elijah informed me that he needed to throw up right after the 9-hour mark. I handed a bag back, and he got everything in the right place. Everything did not get to the right place the second time, 30 minutes later. He had just eaten a few pieces of licorice, so guess what color the goop was that I cleaned out of his car seat buckles on the side of a road somewhere in Kansas.

Repeat that process a few more times. I have never in my life been so anxious to get somewhere. Every mile seemed to last ten minutes. I desperately looked at the clock every few seconds. I wanted to burst out of my skin. I wanted to be in Omaha NOW. Elijah ended up vomiting a total of seven times on that leg. I felt so awful for him and his very empty tummy, but the only thing I could do to help was get to our destination.

STOP 12 – Omaha, Nebraska
STATES DRIVEN THROUGH: Minnesota, Wisconsin, Illinois, Indiana, Ohio, West Virginia, Kentucky, Tennessee, Alabama, Mississippi, Louisiana, Texas, Oklahoma, Kansas, Nebraska (15 total)
PEOPLE VISITED: Cathy, Jayne, Chloe, Cate, Susan

We arrived at my aunt’s house in the evening and we were greeted by smiling, cute family members and a hot dinner. I was a unique and new level of exhausted that evening. The boys were off-the-charts tired, as well, so I tucked them into bed reasonably early. My aunt and I stayed up for a bit and chilled in front of the television before I headed to bed myself.

The next morning I packed our things into the car and we headed across the street with my aunt to walk around a pretty park. The boys were happy to stretch their legs and see the pretty waterfall and walk through a “spooky forest.”

Afterward, we met my cousin and her two cuties, Chloe and Cate, for some park play-time followed by a matinee (Rio).

Back when I lived in Omaha I had worked with a great group of people, some of whom I still stay in contact with. I hadn’t made plans to meet my pal Susan before setting out on this trip, but before we headed into the movie theater that day, I called her at work on a whim. Thankfully she answered and I was so happy that she had time to say hello and goodbye on our way out of town. We visited her at work and she kindly bought us lunch in the café. We got to see her office and it was just really nice to hug her. It had been many years since we last saw each other and she is such a warm, kind friend. We left her feeling refreshed and positive about the last leg of our journey.

STOP 13 – Johnston, Iowa
STATES DRIVEN THROUGH: Minnesota, Wisconsin, Illinois, Indiana, Ohio, West Virginia, Kentucky, Tennessee, Alabama, Mississippi, Louisiana, Texas, Oklahoma, Kansas, Nebraska, Iowa (16 total)
PEOPLE VISITED: Deb, Chad, Ellery, Audrey

Our two-hour trip to Des Moines was a breeze. Compared to our previous leg that seemed to last a lifetime, central Iowa came quickly and effortlessly. We made it to Grimes in the late afternoon only to realize that I had an old address for my high school and college friend, Deb. Thankfully, they had moved only a few miles down the road, so in no time we were at her doorstep. When she had heard about us taking this trip before we departed, she kindly offered her home to us as she realized we would be coming through Des Moines on our way back home.

Deb and I have always had a special bond. I have fond memories of our friendship from junior high, high school and college. Thanks to Facebook, we reconnected after years of not being connected. It has been so nice to reconnect with her. Last year she and her family were in Minneapolis for a family getaway and I was able to meet her husband and two gorgeous daughters. It was so nice to be able to spend the last evening of our big adventure with Deb and her amazing little family.

When we arrived, the kids were ready to play! My boys immediately became acquainted with Ellery and Audrey and their cool toys. The four of them zoomed around the house in a blur! Deb and Chad ordered pizza and the kids had a picnic on the floor while watching a show. After dinner we went outside where there was a pond and many hungry ducks. The kids fed pieces of bread to the ducks and played for a while.

Ellery graciously gave us her bedroom for the night, so I put the boys to bed and stayed up for a bit to do some work and catch up with Deb and Chad. We could have taken our time getting out of town the next morning since there wasn’t anyone expecting us and we didn’t have a set schedule for the first time on our trip, but I was eager to get home. The boys and I ate a quick breakfast, said our good-byes (after solving the case of the missing Elijah shoe) and we were on our way. Home seemed oh-so close, yet oh-so far away. Those last four hours seemed to take eight hours.

STATES DRIVEN THROUGH: Minnesota, Wisconsin, Illinois, Indiana, Ohio, West Virginia, Kentucky, Tennessee, Alabama, Mississippi, Louisiana, Texas, Oklahoma, Kansas, Nebraska, Iowa, Minnesota (16 total)

Getting home was sweet, but surreal. The scope of the trip had not yet sunk in. The boys and I were spent on many levels, but our hearts felt so full. We had just finished a trip that many people thought we couldn’t or wouldn’t do. We made real-life connections with many incredible people. We learned a ton about the selfless nature of humans and the bond that heart families share. I knew there would be a lot to process, and I was right. I promised myself I wouldn’t write my final thoughts about the trip until I had fully processed the entire adventure.

When we first walked into our home, I remember everything seemed brighter. The colors in our living room were much more vibrant than I had ever remembered them being. The pictures on our walls popped out more than they had before. Even Sammy asked if the photos on the wall were new. Normally I see our house as a dirty pit, but on this day it was inviting and warm and there’s nowhere I would have rather been.

Dan was just starting his crazy weekend work at that point, so I knew we wouldn’t see him for a few days. I could have brought the boys to the dropzone for the weekend, but that was not an option for me. I did not want to go anywhere. Unexpectedly, Dan ended up driving home that night after a long day at work so we could unleash love and hugs on him. The way Sammy hugged him was so sweet and I’ll always have the image in my head of both boys’ heads lying on his shoulders at the end of our driveway.

The following days and weeks were emotional. I missed my new friends so much and my heart ached not knowing if or when I would ever see them again. At the same time, I was so thankful and happy beyond anything I could ever explain that I was able to meet so many amazing people in real life.

It wasn’t until a few months after the trip that I said, “I can’t believe I did that!” while thinking about our summer adventure. It took a while for me to grasp the enormity of our undertaking. I may have been nuts to take it on, but I don't regret any of it. Even the super-tired parts and Elijah waking up so early every morning propelled me into greater insight into how he operates.

Since the trip, when I encounter negative thoughts, I remind myself about the road trip. If I can drive my two precious boys 3,800 miles around the country, I can do just about anything. Accomplishing tasks is much easier for me now. I find that I am more motivated to DO and speak up and create and love and live. Our amazing summer trip transformed me. I'd do it again in a second. In fact, an even bigger one is brewing in my head. To be continued!