Saturday, August 29, 2015

Fullness

If I had to describe our summer in one word it would be FULL. It has been totally packed full of fun adventures with one another and with family and friends. In May I never would have predicted that we could fit so much into a single summer. And honestly, much of the reason that we were able to squeeze so much in is thanks to Elijah's new medication. The dosage still is not ideal, but we are inching our way there slowly. We know that it does something very good for his brain, so we have continued to perfect the dose. Thank goodness we have had the summer to work through the bulk of it!

This has been a long time coming, but both Dan's and my cars are basically useless. Mine is currently not working at all and Dan's is limping along like a 100-year-old man. Some big developments and blessings have come our way in the past week. We have purchased a new (to us) Camry that is seriously the most beautiful thing I have ever seen. I have NEVER been more happy and grateful to drive a car in my entire life. I LOVE IT.


I love driving places and not being stared at for being so annoyingly loud. I love not having to park at the deserted end of the parking lot when I meet someone for a photo shoot. I love that the radio works and the seat moves forward and backward and that I can communicate with others in the car without yelling. Sammy's favorite feature of the car is the fold-down cup holders in the back seat. He loves them and exclaimed, "This is the best car EVER! My favorite one in the entire world!"


We have been working with my car mechanic cousin Trevor (who is sooo kind to us) to figure out which one of our pieces of junk we should salvage. In the meantime, my sister and her husband came upon an extra car unexpectedly so they offered us one of theirs. So now we have two working, non-embarrassing vehicles to drive. Yay! We are super grateful for not only our new cars, but also for the people in our lives who have helped us out so much.

All summer long I have wanted to sit down and write a post about new developments with Elijah, but things just keep developing so it never seems like the right time. I think what describes things the best is what I wrote in one of my last posts about Elijah being composed of puzzle pieces. We are learning what the main puzzle pieces are and that we need to guard those pieces with our lives and keep them firmly in place so that the smaller pieces don't fall off the table. Keeping sugar intake under control is a HUGE piece. Early, consistent bedtimes is another major piece and now so is reading his behavior carefully and changing the dosage of his medication accordingly. We have also continued with essential oils and I don't know if this is a main piece or not, but it certainly isn't hurting. Elijah does still have rough days, but the definition of "rough" has changed since last winter. Even when he is totally exhausted, he can leave a fun party without throwing a fit or use the restroom when asked (not always, but it CAN happen).


The boys have had so much fun getting to know my mom this week! She is visiting from California and we are having a great time with her. Elijah and Sammy were super excited to take her to see Inside Out (their second time seeing it, lucky boys), their most recent favorite movie obsession. They are also educating her on the topic of Captain Underpants, potty talk and brotherly "love."

It is going to be strange having both boys in school after this insanely busy summer. It's just over a week away! Thanks for peeking in and have a great rest of your weekend!

Wednesday, August 19, 2015

Reunited and fitting the puzzle pieces together

Sammy is back home and the world feels right again. :) I missed him terribly, but I LOVE that he had such a good time with his grandparents/aunts/uncles/cousins. Elijah had a great week at heart camp. He had fun again this year and was able to tell me way more about what he saw and did throughout each day than the past two years. I got to hear all about the owls and chickens and songs and kids. He told jokes again for the talent show, but this year needed my help. I went up on stage with him and helped him through the jokes. Once he saw that people were LOVING him, he was able to tell a few on his own. :) He won the award of "Mastermind" for the week since he pondered so much and thought through every situation.


Elijah since has had a stellar dental visit (no cavities!) and we said good-bye to my parents as they traveled back to North Carolina. Sammy has had a MUCH better attitude since coming back home from northern Minnesota. Everyone there must have been an excellent influence on him! In the past few days I have occasionally looked at him and said, "PLEASE just let your brother do...X.." and he has looked at me as if to say, "Ok, Mom." and he has just chilled a bit. It has helped to alleviate some arguments/disagreements.

Today we found out who the boys' teachers will be this coming school year. I literally cried happy tears while standing at the mailbox when I opened Sammy's envelope. He has Mrs. H! She was one of E's kindergarten teachers and she is incredible. We love her! Once my happy tears hit the ground, I let out an excited scream that I'm certain echoed through the neighborhood. I'm not familiar with Elijah's teacher, but I learned from a trusted source that she is awesome. YAY all around!

I said something to Dan the other day regarding Elijah's struggles, which sparked a visual for me. After the second night in a row of cleaning sheets in the very early morning hours which resulted in NO sleep for any of us from 4:00 on, I just KNEW the main culprit was SUGAR. When E consumes too much sugar, he has huge accidents. Huge accidents occur in the wee hours of the morning for him. When he is awakened in the wee hours of the morning, he does not go back to sleep. When he does not go back to sleep, he is tired and anxious (as are the rest of us). When he is tired and anxious, things are difficult...for him and for his family. When this scenario happens for days in a row, everything is magnified and CRAZY.

As I said all of this to Dan, he said to me, "Elijah is a puzzle! It's not just one or two things that need to happen. A handful of things need to occur in order for him to function properly." Since hearing this, I've been visualizing a six-piece puzzle. If one piece is missing, we can still work. If two pieces are missing, things start to get tough. If three pieces are missing, we all struggle. The pieces? Medication, sleep, sugar intake/diet, proper potty direction (day and night), stimulation (NOT over-doing it) and anxiety management. When and if all of these factors can align favorably, we will all be feeling good!

Heading to bed now! Thanks for reading! More again soon...

Thursday, August 13, 2015

Butterflies, sickness, camp, cousins, vacation and water...phew!

Since my last post, we have been busy! We have raised a few caterpillars who have transformed into beautiful butterflies. In this photo Elijah is holding Mr. Juicy! We set him free yesterday. I sat next to him until his wings were ready to fly. Watching the entire process from egg to caterpillar to chrysalis to butterfly is incredible. It's a miracle!


I think Mr. Juicy flew back to our house for a visit today! I never see monarch butterflies in our yard, but one sat right on one of our bushes for a while this morning. 


We spent a few days last week in Iowa for our annual family reunion. The boys had more fun than ever this year, playing with their second cousins and splashing in the lake.


They got tons of snuggles.


We enjoyed a campfire by the lake one evening. This is the FIRST time Elijah has ever been able to participate in anything past 7:00pm (thank you, Straterra, for helping to expand his threshold!). We are still having some issues with behavior, but overall things are better. We are seeing fewer incidents and they are overall less dramatic. We do still have rough days and moments, but we are finding that he can bounce back from poor sleep or overstimulation MUCH more quickly than before. We are praying this trend continues.


The boys got a couple boat rides, which is always a treat!


They had so much fun in the lake this year! If we would have let him, Elijah literally would have spent every waking moment swimming. Being in the water is calming for him. It is definitely his happy place!


Silly green faces with cousin Cate!


We spent tons of time sitting on the dock and gazing out over the beautiful lake.


The boys got a to have a fun popcorn-movie night with their awesome second cousins (seriously, this bunch of kiddos is incredible...love them all!).


Literally two minutes after we got home from our Iowa adventure, Sammy dropped onto the couch. He spent the following 48 hours with a fever and a sore throat. He felt crummy. It was sad seeing him out of sorts, but it made for a good photo op! Sleeping on Gramps' lap during story time.. :)


The day after Sammy healed up, Elijah got the virus! :( Sammy thankfully was feeling good enough to go with my dad and stepmom up to northern Minnesota to spend some time with family. Elijah stayed back because this is heart camp week. We have been bummed that he's had to miss a few days of camp due to his fever, but he is looking forward to going tomorrow for the last day. Tonight we will be prepping for joke-telling at the talent show!

Here is a cute video of Sammy running to Elijah Monday when we picked him up from camp. He has done this SAME exact thing every year. It's so precious. "BUUUDDDDDDDYYYYY!"

video

With Sammy up north, the boys have been missing each other like crazy this week. I've had to limit Elijah's phone calls to 1/day. He tells me how much he misses Sammy about 100 times an hour. Their phone conversations are ridiculously adorable. The first time they spoke Elijah excitedly said, "SAMMY?! Is it really YOU???" :)

Thanks for peeking in!

Wednesday, August 5, 2015

Whiplash

Things have been so up and down with Elijah's behavior lately that I constantly feel like my head is spinning. I keep thinking of a line from Twilight (ha!) when Bella tells her moody vampire boyfriend, "Your mood swings are giving me whiplash!" We have more good times than bad, which I'm so thankful for, but the bad times are tough. I still believe that the Straterra is helping on some level, but we can't seem to figure out the right dosage. Or something. Maybe it did work and is slowly starting not to. Who knows.

With third grade quickly approaching, panic is settling in. We aren't sure about whether to start out the year with half or full days and I don't have any idea who his teacher is going to be. I don't know whether I should throw tons of information at his new teacher once we know his/her name or if we should sit back and let the year unfold.

I sat down with someone from our county today who did an assessment of our situation. Based on everything I told her, she thinks Elijah might be able to qualify for some helpful services but we won't find out for sure for a few weeks. I have been more candid recently with medical and mental health professionals about how drained we all are, how bad BAD is and how I have to completely stretch myself to near breaking point in order to accomplish "other" things (work, cooking, cleaning, etc). We thankfully have good stretches, but when we hit a rough patch I seem to forget all about those times. The bad times overshadow everything. The assessor got to see quite the "activity" this morning, complete with hitting, punching, name-calling, head-butting, screaming and endless complaining. Ugh.

We have done so much to help our oldest boy, but I feel like there's more we could do. I'm ready to do whatever else we need to do, even if it means missing out on some work or not cleaning my home. Like the assessor today said, we HAVE to help him to be more consistently functional now because as he gets older things are only going to get more complicated.

Sammy and I are waiting for Elijah now while he is in OT/PT. It is during his appointments that I get things done, so I'm off to do a bit of work! Thanks for peeking in!

Sunday, August 2, 2015

On Charlotte 2015

Our time in Charlotte with my dad and stepmom went by way too fast. It always happens that way, I suppose since we are in the good company of family. The second we pulled in their driveway, we felt right at home (as always). My stepmom had the perfect beds prepared for each of us. I got a bedroom ALL TO MYSELF....complete with comfy bed, pillows and a fan. And across the house from the boys. I slept great! All of us slept well!

The morning after we arrived, all of the boys dressed up as cows so they could get a free breakfast at Chick-Fil-A. I love this picture! :) Gramps is such a good sport. (By the way, we barely got Sammy in this outfit and out the door looking like this.) 


The boys got to watch TWO movies in the theater while we were there. Inside Out for the first time (they loved this one soooo much and are still talking about it daily) and Minions for the second time. Check out these cozy recliner movie theater chairs!


We checked out a local museum one day. The boys had fun running around. Here they are doing "creepy bug faces."


Bath time! Washing off the sunscreen and sweat from the day!


While we were there, my dad/stepmom offered to watch a friend's dog for a few days. They have a dog of their own (Juan), but (sorry Juan!) he's a little bit grumpy and old. Elijah and Sammy were SO excited for Daisy to arrive! Oh my goodness, they were squealing and running in circles when she came up to the door for the first time. She is an old dog, too, but she is so laid back and gentle. The boys and I adored her.


Before we left, Sammy drew this picture for Juan and hung it by his bed in the living room. "So he will remember me!" :)


The boys did story time with Grammie and Gramps every night. A special end to every day!


We went to the Lazy 5 Ranch again this year and this time we drove through it in the car. We drove along the winding path through tons of wildlife, feeding them, talking to them, telling them to GET AWAY, squealing, but loving the entire adventure. We were told NOT to feed or pet the zebras, so Sammy dissed this guy right away.


I loved feeding a giraffe from the sunroof. He was by far the most gentle creature we encountered during the entire adventure. He accepted the food gingerly, almost with gratitude. We all loved him!


Elijah and Grammie, playing on the ship at Lazy 5!


We made it to their community pool 3 or 4 times. The boys had a blast! They loved their swim noodles and time in the water. Sammy began "swimming" (with the help of his floatie and a noodle under his armpits) across the entire pool by himself...kicking, paddling with his hands and all! I was so proud of my boy! He is becoming more adventurous all the time!


When we went to the park by their house, instead of playing on the swing or slides, Sammy started picking up garbage. I asked what he was doing and he said, "I HAVE to clean up this litter! Is there a recycling bin around here?" That's my organized, thoughtful Sammy. As we got in the car to leave, he saw a stray piece of garbage he had missed and felt terrible about leaving it behind.


I love making memories with my precious boys and my parents. This summer's trip was so much fun. We get to see Grammie and Gramps again this coming weekend in Iowa and we are all excited for it. Dan and I constantly express gratitude about our boys have such loving grandparents. Thank you, DAD and PAULA for being so kind, gracious and selfless! We love you guys and love that you let us invade your home without a single complaint.

We drove back to Louisville for a QUICK night after our time in Charlotte, and drove the rest of the way home the following day. It was a long one! The last few hours were rough, involving potty in pants, a smelly car, a VERY windy car ride, VERY loud and excited-to-be-home boys and a VERY crabby mama. I literally pulled into our driveway, got out of the car (without closing the door) and ran inside to ask Dan for HELP. An hour later we were all feeling much better (and sleeping).

This coming week is a busy one for us. Hoping you are doing well and thank you for peeking in!

Wednesday, July 29, 2015

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!

Saturday, July 25, 2015

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.