Showing posts with label heart camp. Show all posts
Showing posts with label heart camp. Show all posts

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!"


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!

Saturday, August 2, 2014

Back-up dancer Elijah!

Here is a super cute video of Elijah being another boy's back-up dancer at the Heart Camp Talent Show on Friday. :) I saw him walk out with the wig-hat-clocknecklace ensemble and smiled. That is our oldest boy for sure. I love it.


Elijah's talent was joke-telling and he did GREAT! We rehearsed his performance a few times beforehand and I wrote a note card out for him. I can't show you, though, because he decided to tell the jokes while lying on the ground (I'll be more clear next time). I held my camera way over my head to capture the scene, but part of my hand got in the way and I missed it. :( Sad.

Heart camp was awesome this year! I feel like Elijah got much more out of it (comparing to last year) and was way more excited about it. As Sammy and I watched the talent show, I realized that every single heart kid is so special in such an awesome and unique way. These kids are incredible and so spunky and have such personalities!

I want to say a quick "thank you" to the helpful and encouraging comments/emails we have received recently! Thank you to a handful of you who we've never even met, yet who we receive such great insight from. I LOVED the early-morning quiet time thoughts, Lauren! I think you're onto something there. And Maggie, getting the class schedule beforehand is a great suggestion. We'll definitely do this! Thank you!! We are ALWAYS open to new ideas. It's part of the reason I keep up with this blog.

I'm meeting a very old (well, SHE's not very old, but I've known her for a very long time...just to clarify!) friend for lunch on Monday. She has a son with special needs and also has worked in the sp-ed department at a nearby school for years. She has both perspectives, home and school, and has graciously offered to share insight with me. I feel so grateful!

The boys and I are spending a quick night at the dz and will head back home in the am for church and then laundry/packing at home. We will be heading out on Tuesday for an almost-week-long trip to Iowa to spend time with family. We are excited! PLEASE pray for Elijah to feel safe and secure and for good sleep and amazingly awesome behavior while we're away. Thanks for checking in! Have a great weekend!!

Wednesday, July 30, 2014

Peeling back the onion. (And fun pics at the end, if you get that far!)

Approximately 90% of my brain has been used to figure Elijah out this summer. It's been worth it because this week I finally feel like I'm maybe sort-of kind-of beginning to understand the way he thinks and organizes his thoughts. The following paragraphs may or may not make sense, so please bear with me. I have a lot on my mind but I have not pre-organized any of it.

We have really buckled down with routine and schedules. Our routine has become even more strict (if that is even possible). I write very detailed schedules on the white board, including times that everything will be happening throughout each day. I have to remind Elijah to glance at it a couple times every day and he takes it in. I can tell it helps to make him feel secure. He needs the predictability. Now that I'm writing exact times down, I have to do my very best to stick to them! If I write down that dinner is at 5:00, I need to make sure that happens.

There are so many layers to the challenges we tackle daily, so I sometimes forget the really helpful little details that we've learned along the way. Like making sure Elijah is exposed to sunlight (or faux sunlight) in the late afternoons/evenings due to his sleep disorder. A few days last week when it was raining and we didn't go outside, he was getting up REALLY early the mornings that followed. I've been making sure he goes outside as much as possible after 3:00 when it's doable. On rainy days, we will be breaking out his light again like we did through the winter. It seems to help enough to continue with it.

I've been extra zoned into what works and what doesn't work with him lately. He relies on anything that involves details or facts. When he meets someone new he asks them, "What is your name? How old are you? Where do you live? When is your birthday?" Then he says, "My name is Elijah. I'm seven. I turned seven on February 20th. I'm going to be in second grade in September. My mom is 39. She turned 39 on July 23rd. That was a Wednesday." He engrosses himself in geography and history (facts). He now knows where every single country in the world is located on the globe, can you believe that?! He knows how many countries are in each continent, what their flags look like, etc. He constantly checks the weather (I haven't shared with him yet that forecasts aren't factual, but right now he thinks it's concrete information). He falls apart whenever my answer to one of his questions is, "I don't know." He cannot handle that uncertainty and has a meltdown. I'm still figuring out how to deal with this (ideas welcome!). The other day he dumped a bunch of markers onto the floor. I said, "Elijah, you are going to have to pick these up." He dropped to the floor and began flopping around and screaming, "I caaaaan't! I don't wannnnt to! I CAN'T DO IT!!!!!" So I said, "Please pick up the green, red and blue markers," and he instantly was by my side looking for the markers in that exact order. "Green, red and blue? Here you go!" I have been trying to be as specific as possible and also to be as factual as possible when interacting with him. Unless we are doing silly tickle-time. Then nothing is factual and everything is out-of-control and awesomely silly. :)

I have also used facts as a distraction when he seems to be on the verge of falling apart. I will ask something like, "Can you tell me who the 16th president of the United States was?" and he is all over that and will usually follow it up with another question. Music has been a great distraction for him lately, too, so I use that especially in the car when things are beginning to unravel. He has a few books about the U.S. and magnets that he likes to look at with all of the U.S. presidents, so directing him to things like that helps sometimes.

And as always, we've been putting him to bed consistently early at night. According to the fitbit, he is sleeping on average 9 hours/night, which is great!

We continue to work on potty issues and every couple of days I seem to have a new idea. The other morning I had the thought to draw pause buttons on paper and cut them out so he could put them in his pocket. I've been telling him all summer to "push the pause button" when his body needs to go potty. I figure having an actual "button" to push (or just hold) might help.

I've had a few ideas for the upcoming school year. It might be helpful to write out some short questions ("Do you need help?" "Do you need a break?" "Do you understand?") and taping them to his desk so his teacher can point to them if he appears lost/overwhelmed (as opposed to asking him in front of his peers). I would like for there to be a safe place for him to go when he feels overwhelmed, and hopefully before he begins acting out. We are constantly trying to make him more self-aware. This has been a big challenge. He has such a difficult time describing general feelings or events. He is really good at explaining details, but main ideas and generalizations are really tough for him to grasp or explain.

Heart camp has been going great! He is so much more excited about being there this year. He seems to be having a blast. Sammy misses him while he is gone and they devour each other once they are reunited. Yesterday was "costume day," so he wore his new crayon costume. I found the following photo on the camp's website today. He spruced up his outfit a bit, I see. That's our boy! :)


Dan was home today so we all ventured out after camp to get our first-ever pet! Or pets, I should say. The boys are now owners of two betta fish! Elijah named his fish "Bluey" and Sammy named his "Fishy-Wishy." We are all so happy to have new family members! I found both boys gazing into the tank many times throughout the afternoon.


Here is a funny pic I took this morning after I told the boys, "NO toys at the table!" As always, they were good at finding the loophole. :) (Notice Elijah is studying presidents on the placemat.)


I think that's all for tonight, whew! Hubby-snuggle time and bed is upon me. Thanks for peeking in!

Monday, July 28, 2014

Second year at heart camp!

We had a fun weekend spent mostly at the dropzone. I'll maybe save some of my Elijah-thoughts for another post and focus on other things tonight! I captured a couple cute smiley pics of the boys over the weekend.



Today was Elijah's first day of his second year at heart camp! It sounds like he had a blast! On my way to pick him up I was saying this prayer: "Please no poop or behavior issues, please no poop or behavior issues.." Repeat x 200. From what I gathered, there were no poop or behavior issues! He was sooo excited to tell me all about his morning, which was a big change from last year. He is able to wrap his head around what heart camp means for the first time. "Sammy can't go to heart camp because he hasn't had heart surgery, right, Mom? Not many kids have heart surgery, right?" He was eager to tell me about petting a chicken and playing silly games and preparing for the talent show on Friday. I have been praying so hard that he will make a connection with a fellow (local) heart friend. We will see how the week pans out!

Sammy and Elijah were both sad this morning before camp. Elijah kept saying, "But I'm going to miss Sammy today!" and Sammy kept saying, "I miss Elijah sooo much!" When we saw Elijah walking down the road to meet us, Sammy ran into his arms, saying, "BUDDY!" These boys love each other so dang much.


He did the EXACT same thing last year, but Elijah wasn't as receptive then. :)


We have a lot going on this week! It'll be a crazy one, but my post-surgery fog finally seems to have lifted. I actually planned a week's worth of dinners, wrote out a detailed schedule through next Sunday on the white board and have planned out a few photo shoots, work days and some fun time. I love having a clear head!

Thanks for checking in and I hope you all had a great weekend!

Friday, August 2, 2013

Heart week done!

Elijah has been at heart camp all week, so Dan and I have gotten to spend some alone time with our little Sammy. One morning this week we took Sammy to the zoo. He loved jumping in the puddles and splashing Daddy. :)


Here is a video from Elijah's talent show today. I arrived at the scene to find Elijah dressed up in a tiara, ladybug wings, a lei...and holding a fairy wand in one hand and Lamby in the other. :) I was curious about what might be in store! He needed a few prompts from me, as you will see in the video below, but my cutie pie did great! His peers and counselors supported him, which meant a lot to me!


We are excited that Elijah successfully completed his first year of heart camp. There will be many more to come! Can you spot him in the below pics?



Here is Sammy on the way to pick Elijah up from camp one day this week. "Mama! Take a picture of ME!" (This is a rare request, so I was quick to respond.)


Sammy, Dan and I had a great time together at the zoo on Dan's day off this week. He loved the fishies!


I promise I'm still working on the posts/photos from our big trip. I have so much I want to write, and I don't want to leave anything out. Stay tuned!

My boys...ALL of my boys (Dan included)....and I leave for Iowa early tomorrow morning! We are very excited for another vacation. Dan and I will have a night "away" tomorrow night, which we will share about soon. Have a good, safe weekend, everyone! Thanks for checking in!

Tuesday, July 30, 2013

Heart camp happiness

Here is a sweet video of Sammy greeting Elijah as we picked him up from Heart Camp today. He loves his bro so much (and vice versa)! Camp seems to be going well. Elijah doesn't seem to be connecting with kids yet, but I am still hopeful and I pray for this to happen at least twelve times every hour.

Trip tales coming soon!


Thursday, May 30, 2013

An upcoming birthday and the WIENERMOBILE!

It has been over a week since my last post, which I don't like to happen! The boys and I spent last weekend at the dropzone for the first time this season. Elijah and Sammy had a blast seeing friends and running around in the fresh country air, even though it was COLD. We are planning a birthday party for Sammy this Saturday at the dz, so we're praying for warm weather and a fun day for our cute boy.

The boys and I ran into the WIENERMOBILE last weekend! How fun! I don't think I've ever in my life seen a Wienermobile. Elijah and Sammy were able to explore the inside, as well. So fun!


Elijah's last day of kindergarten will be next Thursday. Weird. Super super weird. I cannot believe how quickly time passes! I just finished his application for Heart Camp this summer. He will attend camp for one week, on mornings only. This is huge! I have been looking forward to sending him to this camp since he was born. I am praying that he will form some good friendships with other kids who have traveled similar paths.

I will certainly share photos and stories from the coming weekend. We are looking forward to celebrating our sweet Sammy's third birthday. We love him so much!

Thanks for reading!