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!

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...

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!"

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!

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!

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!

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!

Berries and behavior

Soccer and swim lessons are done...hooray! It's sad, too. Sammy cried at the thought of not seeing his teammates again. He does not like change!

On a fun note, the boys and I picked berries for a Hope Kids event yesterday. It was fun and filled with flying beetles that were VERY attracted to Sammy. Despite that, we loved picking juicy strawberries. We picked three pints and they are all GONE! Yum!

I love these smiling faces!

We found a heart-shaped berry! 

I met with Elijah's Fraser social skills therapist by myself on Monday and had an unexpected reaction to our visit. I hadn't met with her sans Elijah since February. I explained to her what we experience daily... the fact that none of us really sleep past 4am and that we are often changing sheets and cleaning up accidents in the middle of the night and that we are constantly on edge and TIRED and we never know what to expect with behavior. C literally dropped her pen onto her pad of paper and said, "Megan...this is TOUGH stuff. Your lives are not the norm. PLEASE be easy on yourself."

Ugh...unexpected tears..

I know this, and I feel like I almost try to hide it from people. I never want anyone to feel like we think we are stretched more than anyone else. EVERYONE I know feels stretched beyond their means. Life is crazy for everyone! But things are tough here. C was validating.

I mentioned the medication Dr. M had prescribed and she felt like we should just try it. Why not?! My brain says, "Ha!" I have prayed so hard about this. Elijah is SO sensitive to meds and usually has such a negative reaction, but it is so enticing to try SOMETHING.

Dr. M thought we would know within two to three days if this med wasn't a good fit. This morning I handed E the capsule and prayed, "If he can't swallow it easily, it's a sign." He swallowed it easily. Overall, behavior today was slightly above average. We'll stick with the meds for a few more days before committing.

To be continued!

A few random things about today

- Elijah dunked his head under water FIVE times today during swim lessons! His teacher was sooooo shocked and excited. Brave boy.

- I took Sammy to kindergarten intake today and he did great. He was so stinkin' cute. He is certainly ready for school.

- While Elijah was in OT, Sammy and I ran out to the post office. On our way to the car, he started running quickly down the sidewalk in the opposite direction of our car. I yelled, "Sammy?! Where are you going?" He yelled over his shoulder, "Don't worry! I'm just takin' a long-cut!"

- The boys have been talking about the two high school graduation parties they went to on Saturday with Dan while I was shooting a wedding. I noticed today that instead of "graduation," they have been saying "congraduation." I like it!

- The boys were playing "doctor" with me tonight. Sammy was my doctor and Elijah was my mom. Sammy gave me about 10 shots and then went to test my reflexes and said, "Ok, I'm going to hit you REALLY hard now!" :) Elijah said, "Umm, I think you're a REALLY bad doctor!"

- We had mostly really great behavior today with just a few hiccups. I'll take it!

The past TWO weeks in numbers

3 trips to the swimming pool

8 swim lessons (E)

2 visits to child psychologist (E)

2 visits to Fraser - social skills class (E)

2 visits to OT (E)

2 visits to PT (E)

1 visit to pulmonologist (E)

1 visit to development pediatrician (E)

1 visit to pediatrician (S)

2 photo shoots

1 full day of wedding photography

6 blog posts written

4 soccer games (S)

1 birthday party thrown

7 trips to the gym

10 loads of laundry done

5 trips to the grocery store

2 photo sessions edited

4 parks visited

Summer has been soooo crazy! We are enjoying it, but wow! Swim lessons end this week, so next week will be a bit lighter. But then we'll be getting ready for our big trip! The little boys and I are road-tripping out east again this summer. First stop: Kentucky, to visit one of our favorite heart families, Evan and Co. Second stop: North Carolina, to visit my dad and stepmom. We are excited!

As you can see from the above list, we've been spending a lot of time in the water. I am determined to get these boys swimming! Both boys have been terrified about dunking their heads under water, so we have been working hard on it. FINALLY, after much coaxing and a bit of bribery, Elijah willingly went under water today THREE TIMES! His swim instructor is going to be soooo happy tomorrow to see this! He also went down a huge water slide all by himself six times and (kind of) jumped off the edge of the pool into my arms. Progress! And have I mentioned that Sammy is actually excited to get into the pool these days? That is such huge progress compared to last year!

We are currently in a night-time potty transition, which means...sleep disturbances. Which means...we are having a hard time controlling our behavior (all of us). Things had gotten a bit better but they are a bit rough again. Don't get me wrong, it is GOOD that night-time potty is finally being addressed. In the long run, this will be a good thing as long as we can stick with it.

I hope you all are enjoying summer! This weather is fabulous. I'll end with a few Sammy funnies:

cardboard = "carveboard"

instead of "fall in love," he says "follow in love"

Pulmonology and dev-ped check-ups

Yesterday Elijah had a check-up with his pulmonologist, who he still sees because of croup. We have always loved Dr. K. He is one of the best doctors we have ever gotten to know. I am constantly amazed at and so thankful for our incredible doctors. As always, Dr. K blew my socks off. He is incredibly smart, relatable and kind. He always makes us as parents feel valued, validated and respected. As I talked about E's croup in the past year, he kept saying, "Very interesting." When I finished talking, he explained what he found so interesting. First of all, it is "highly unusual" for an 8-year-old to get recurrent croup (of course!). He was intrigued that Sammy also gets it regularly and severely. Also, according to him, most parents never know when croup is coming and they live in constant fear. I almost always know when it's coming, and I give the boys oral steroids to prevent or lessen an episode. Dr. K was in agreement that giving meds preventatively is absolutely the right thing to do. As for E's croup, although he is perplexed, he feels we are doing everything we can at this point.

He asked about summer plans and I shared that the little boys and I will be road-tripping out east again this year. He thought that was just the coolest thing ever and promised that he would send me a few children's books on CD that his children once enjoyed. What doctor does that? He is the best!

I have to share another little tidbit about our visit.. I brought both boys to the appointment and as expected, they started to fight. Elijah tried to head butt Sammy and a few unsavory words came out of his mouth. Then Sammy was saying, "Mommy-Mommy-Mommy" repeatedly as I tried to talk to the doctor. Dr. K looked straight at Sammy and firmly said, "Excuse me!" then at Elijah and said, "Elijah, you need to chill a little bit, okay?" Both boys quieted. At first I was embarrassed and thought he must think I'm a horrible mother. After the appointment I realized he was trying to help me. He has children. He knows children. He saw me stressing while trying to focus, and he helped me out.

Today we visited with Dr. M, E's developmental ped...another top-notch doctor! Seriously, I cannot say enough good things about his team. Dr. M took tons of time with us. Learning from yesterday, I brought Sammy to daycare so I could FOCUS. Elijah did great! We did not have even a single issue during the entire appointment, which is a pretty rare thing these days. We discussed the past few months...how school ended on a mostly good note and how summer is beginning on a mostly sour note. He suggested another med to "take the edge off," but of course I'm hesitant to try it. Elijah is so sensitive to meds, but the prospect of that "edge" being rounded out a little bit is so enticing. Dan and I have some talking to do.

Dr. M is so good at building Elijah (and me!) up and making him feel proud of himself. He uncovered all of E's accomplishments in the past few months and made sure to give him huge props for everything. This is something I feel like I don't do enough. :( It is so easy to get caught up in the challenging times when we are in the trenches. Dr. M gave me a renewed perspective and I promised myself that I will DAILY tell Elijah how proud I am of him (Sammy, too). I am SO proud of my boys. Despite E's challenges, he is doing so incredibly well...and thriving! It is easy to forget about the hurdles he's jumped over to get to the point he is at now!

As I have been saying, the past few weeks have been challenging. I have been praying so hard for a breakthrough in ANY area. Last night at 3am, Elijah called me into his room, which is not unusual. What IS unusual is that he told me he had to go poop. So he did....IN THE TOILET. This is the first time he has ever done this in the middle of the night. He stayed clean for the entire rest of the night. Maybe our new "system" of taking toys away has been working?! We did a lot of talking about it today and I'm praying last night was a huge step in the right direction. I shared this accomplishment with Dr. M today and he was OVER THE MOON and hopeful about it.

I feel like we are doing EVERYTHING possible to help Elijah feel happier and more peaceful/rested. Please pray with us that we continue to make all of the right decisions!

That's all I have for tonight! Have a great evening!

Desperate times...

What a weekend! We celebrated Sammy (again) this weekend, this time with extended family and friends. Sammy requested a COW theme for his party (I love this), and of course we complied. I love that he chose something a little bit off-the-wall. He was super excited to have a few friends attend this year. His daycare buds are the BEST!

These four cuties have been going to the same daycare since birth. The boys LOVE these girls! They are the sweetest little things and I'm so glad they have such a special bond with one another.

Birthday bro hugs. :)

The cow piñata got a beating.

And today we broke out our pool for the first time this year. The boys had a blast! Sammy is so much braver than ever before with water and trying new things. I'm proud of him!

In all honesty, it has been rough going for our family. Elijah is really struggling again, the boys have not been getting along and it seems like there is often some sort of turmoil in our home. Potty issues have regressed hugely, which has all affected sleep and sanity. I know that better times are in store, but until then we are spent.

This will be another crazy week, including three doctor's appointments, three therapy appointments and swim lessons. I think I just need to accept the fact that life will always be nuts!

Elijah started seeing a child psychologist on Friday and I will take him to see her weekly for the next few months. She is AWESOME! Our hope is that she can help him learn some coping techniques that will lessen anxiety and frustration.

You can see from these photos that we had a few moments of summer-time peace today, thanks to Dan and his bubble-making.

Dan and I have had to get extreme recently. Behavior, potty and sass have been OUT of control, so we have taken away ALL technology until we see an improvement in behavior and sass. And every time there is a potty accident, we take a toy away from E. To earn one toy back he needs to use the toilet successfully all on his own. We are going to keep with this until we see improvement!

Early to bed tonight. Thanks for peeking in! Have a wonderful week!