Croup: Season 9, Episode 4 (Elijah)

Hello from Porta-land! We are still amongst the living, although I have to check my pulse a few times a day to make sure of that. My lack of posts are evidence that we are in a bit of a crazy season right now. It is Dan's super-busy work season, I have taken on a large work project that is due in a few weeks and we've been trying to clean up our new (awesome!) yard and manage life, as well.

Yesterday on the drive to school in literally a matter of a minute, Elijah went from feeling super to feeling terrible. He spent yesterday and today at home. Today I had him lay down for a nap and when he woke up he had a mild croup episode. I could tell it scared him by the panicked look in his eyes, but I stayed calm and encouraged him to do the same. I gave him a teeny-tiny dose of steroids and all was well minus a slightly barky cough for the rest of the day. He took a bigger preventative dose before bed tonight because all of my croup alarms were going off. We're praying for an uneventful night and for a much better, school-filled day tomorrow!

Speaking of tomorrow, we will bring Elijah to Children's for his 6-month cardiology check-up. We have no reason to believe anything is amiss, but it's always good to get the official report.

A couple cute things from this evening.. As I was putting Elijah to bed, he called me back into his room. "Mom? I loved when you laid down with me for a nap today. It was my favorite part of the day." I already knew that because I watched him as he fell asleep and he had a content smile on his face as he drifted off with his arms wrapped tightly around me. Just like our old napping days. It was a precious mama moment that I'll always remember.

We have a family member who is close to going home to Jesus. Sammy and I were praying for her at bedtime and Sammy thoughtfully interrupted the prayer to say, "Mom? I think I know why her brain and body aren't working as well anymore. It's because she's old and her blood got stuck in her wrinkles." That boy. He is so sweet and always thinking of others and also thinking through how and why things happen.

Dan and I brought the boys to a Casting Crowns concert last weekend as a (delayed) birthday gift for Elijah. It was amazing! The boys were on cloud nine hearing their most favorite songs from the radio LIVE. Danny Gokey was one of the opening bands and he had some fun dance moves to go along with his music. Since the concert, Sammy has been trying to replicate the dance moves in our living room and in our backyard as he plays DG's music on one of our phones. It is so stinkin' cute and I love that he wants to be like someone who loves to sing about and dance to Jesus.

We're getting excited to get our RV back, open up our pool for the season and watch our trees and gardens come alive! There is a lot to look forward to but also a lot to get through in the next few weeks. Pray we survive! Here's hoping you all are doing great. Thanks for checking in!!

Spring is here!

Spring is here, spring is here! I don't think I've EVER been more happy to say hello to spring. We are eagerly waiting for the birds to start frequenting our yard and for the big, beautiful trees to start turning green. The sunshine and warmth we've experienced recently has helped improve moods all around our house. Last weekend we were able to enjoy an OUTSIDE fire for once! Ahhh..

The boys are as cute and funny as ever. Since it's been warmer, they've been exploring our backyard and making up creative imaginary movies and games to fill their time. Everything usually turns into Pokemon somehow and there are fake "battles" that take place. The way these two talk back and forth about Pokemon reminds me of two old men talking politics. They are quite schooled in the Pokemon world and Elijah especially knows very specific details about EVERY character. "Oh, him? Yeah, he's on page 97 in the Pokemon manual. He weighs 237.4 lbs and he is 7'9"."

Do you see Sammy's Sharpied nostrils? Yep, constant antics around these parts.

School has been going great for both boys. They are both still enjoying chess club on Wednesday afternoons. If you asked either of them how our winter was, they'd say, "Awesome!"

I recently brought Elijah to his 6-month urology check-up and everything checked out great! They did an ultrasound of his one kidney (we hadn't had this looked at for years) and it looked wonderful. It's nice and big, which is great since it's taken over the other kidney's job as well as its own, and it's functioning well. We've continued to cath him daily since his surgery last summer and it's been working! Third time's a charm.

His well visit last week was great, too. Dr. S recommended that he see an orthotist for shoe inserts to help with his very flat feet. He's been experiencing leg (knee, I think) pain for over a year and the flat feet could very well be the culprit. That appointment is on Monday!

Other upcoming appointments in the next few months: cardiology, ENT, pulmonology. We are also in the process of getting him some extra assistance through the county/state and once we're through all the paperwork this will be GREAT to get him some extra help! He's doing so great. We are constantly so proud of Elijah and Sammy!

We hope you are all doing great! Work for both Dan and me have been insanely busy, hence the minimal posts. That should slow down soonish. Thanks for peeking in! More soon!

Croup: Season 9, Episode 3 (Elijah) ..and other!

At 3:00 this morning I was awakened from a strange dream involving staircases filled with water by a cough. I went into Elijah's room first and found him sitting up in bed, quietly looking at me. Before I could say anything he said, "Uhhhh yeah, I have croup." Thankfully it was mild and I appreciated that he was able to stay so calm. I gave him a teeny tiny dose of steroids and we were all back asleep. He seemed perfectly fine this morning.

The last few weeks have been a bit of a blur. Aside from Elijah's tiny croup episode early this morning, we have all remained free of sickness and I'm super thankful for that! Dan has been traveling off and on, I'm working super hard on a project, Elijah has been up and down with behaviors at school and home and Sammy has been making all of us laugh. We are saying goodbye to a beautiful Minnesota weekend and one that we spent together as a family!

In the past week I have experienced three strange but cool saved-at-the-last-minute-by-Sammy situations that I cannot help but share. A week ago Saturday I was madly preparing for a freezer meals party I was hosting. Sammy and I ran out for an errand in the morning and when we got back I started washing potatoes. Water running through my fingers, I looked down to see that my Sammy ring was not on my finger. Dan gave me a ring with each of our boys' birthstones on the day each of them were born. I particularly love Sam's ring. I get compliments about it all the time. It is beautiful. When I saw that it was gone, I panicked. I told Sammy it was missing and started digging through the contents of the garbage disposal. It wasn't there. I started crying. Then poor Sammy started crying. After a while, he wisely said, "Mom. I know you love that ring, but.. at least I'm still here." I hugged him tight and then he said, "You always tell me to retrace my steps. Where were you last?" We had just come inside from the garage, so I walked outside. Sammy followed and sat on our porch swing while I searched the car. As I walked past him, I looked at the ground as he swung backward and I saw the ring perched perfectly on the cement directly below him. We hugged and cried happily.

The second Sammy-save started while I was waiting in the school pick-up line a few days later. I inched around the corner toward the school in my car when POP...my back tire hit the curb and my hub cap rolled down the sidewalk. I watched it roll away in my rear view mirror. UGH. I'd grab the boys and pull around to get it, I thought. Once the boys were in the car, I drove back and the hub cap was gone. I got out of the car and asked a few kids if they'd seen it. One girl pointed her finger to the east and I climbed back into the car in defeat. Sammy said, "Well Mom! Follow her finger!" So I drove east. Nothing. I stopped in the middle of the road at the first cross street and looked to my left and THERE IT WAS, sitting smack in the middle of the road. I popped it back onto my wheel and drove off happily.

Sammy's third save happened a few days later. Dan was out of town and ALL of my boys (dog included) were up early with the birds. Sammy had come into my room making a little more noise than usual because "Your doorknob just fell off in my hand!" He left the room and closed the door behind him. I didn't think much of it until Buddy started whining. I let him out of his kennel and turned the doorknob to leave the room, except.. it wouldn't open. No matter which way I turned it, the door would not budge. Through the door I instructed Sammy what to do. "Put on your boots. Grab my shoes. Go out the back door. Help me out of the window." I crawled out of the window into the snow and made it back into the house. I removed the doorknob with a screwdriver but the door still wouldn't open (this is the second door in our house that has done this). I spent 20 minutes yanking, pulling, twisting, pushing, banging and finally decided to call a locksmith. Poor Buddy was on the other side whimpering and I knew he had to pee. It had snowed overnight so the locksmith had called to tell me he was a few minutes behind because of traffic. Literally TWO minutes before he arrived, Sammy zoomed by me with a pair of scissors in hand. A second later, that dang door was open and Buddy was happily running up and down our hall. I called the locksmith, told him that we had taken care of it but to come anyway so I could pay him for his drive time. He insisted on no payment and went back home. That was the third Sammy Save in a five-day span!

Elijah has some appointments coming up that I will write updates about in the next few weeks. We've just been trudging along with work and school and loving the unseasonably warm weather. The boys and Buddy have already been exploring the snowless yard and enjoying it. Buddy keeps climbing onto the pool, which is still covered but has ice on top that he likes to chew on. Silly puppy. That's about all for now! Thanks for stopping by!

Happy 10th Birthday, Elijah!

Today marks one decade since our oh-so-beautiful oldest son entered the world. I have spent today thinking back on that day. I remember the smell of the NICU, the way the skin on Elijah's neck felt sooo silky soft and how his small, confident smile told me that everything was going to be ok. I remember being afraid of the uncertainty, but falling head over heels in love and having hope for the future. I remember doing a lot of silent wondering about how his life would play out. We were told over and over that "We just don't know." His doctors didn't know how well his heart would work or how many surgeries he would need. They didn't know if he would grow well or talk well or walk well. There were so many things we could have become consumed with, but by the grace of God we didn't. We kept our eyes turned upward and we cared for Elijah the VERY best we knew how.

I was sitting next to my boy in the NICU when a sweet nurse shared something with me that I'll never forget. She said, "You know he's going to be great, right? These heart kiddos, the ones who have to go through so much, they stand apart." At the time I didn't know what that meant, but I cherished her words and made a point to remember them.

Ten. Years. Later. I cannot even believe what obstacles this boy has overcome and what an incredible little person he has become. Back then, in the days of the NICU, I never could have dreamed that in the following decade Elijah would:
Have 24 surgeries and be followed by 14 medical specialists.
Love Jesus, his little bro, chess, stuffed animals, movies, jokes, Pokemon, cheese, animals, water, skiing, horseback riding and anything that involves going really fast.
Crave adventure and meeting new people.
Have visited over 30 of the 50 states.
Have dreams of being a scientist and a baker and a dad when he grows up.
Look people directly in the eye when he speaks.
Be thriving in school.
Have a little brother that he loves to pieces.
Be such an incredibly smart boy.
Love singing and dancing to worship music.
Tell me, after a middle-of-the-night bloody nose incident, "See ya in the morning, Babe."
Be growing well, talking well and walking well.
Stand apart.

His first decade is an incredible story of love, faith, strength, courage and perseverance. Dan and I have said to each other since even before Elijah was born that he was going to teach us more than we could ever teach him and those words couldn't be more true. He has changed our worlds for the better in so many ways. I love this boy with all my heart and I cannot wait to see how the next decade unfolds!

HAPPY 10TH BIRTHDAY, ELIJAH DANIEL!

Valentine's Day 2017

Happy belated Valentine's Day! Our boys love Valentine's Day and are not shy about sharing their love for everyone. Yesterday after school they put on a "show of love" in our living room where they sang and danced for me for 40 minutes. Sammy kept writing down lyrics and professing his love for mama. He wasn't always comfortable performing so he'd make Elijah sing on those songs while he took care of drumming or dancing. It was great and I soaked in every word!

Dan and I celebrated in typical fashion with a steak and crab leg dinner after the boys were in bed. YUM!

Two weekends ago the boys and I visited the Stillwater ice castles. They were so cool! Elijah and Sammy had fun navigating their way through the castles with maps in hand.

And the cutest little first grader ever had his Valentine musical performance at school on Friday. It was ADORABLE. Sammy participated in the singing AND actions for the first time ever! He kept glancing our way with a cute, toothless smile on his face. This boy melts my heart!

My boys are constantly making me laugh, but this is the one thing I can think of from recently. Sammy has been crawling into bed with me early every morning. If it's before 6:30 I ask him to be very quiet, no talking, sleeping only. One morning he agreed to that request and after lying next to me quietly for a minute, he loud-whispered, "MOM. In the morning, can I tell you about my nose?" It was so funny and random that we both laughed forever.

Elijah has been doing great in school! He's had many great days and we are so proud of him! We had stellar conferences recently for both boys. Elijah's grades are AWESOME for Elijah and Sammy's grades are AWESOME for Sammy. We learned that Sammy is in the 99th percentile for math (wow!) and that he is excelling in every subject.

Elijah has had a few specialist appointments recently that have gone great. He has a few more in the coming weeks. In the next few days we'll be gearing up for his TENTH birthday! Crazy!

Thanks so much for reading and my apologies for being so scarce recently. It's been a bit of a rough start to the year, but things are looking up!

Pushing through winter!

My photos aren't uploading tonight, so I'll just give a quick update! Dan is out of town again, Elijah has been sick for the past couple days and we are trudging through winter. Honestly, it has not been the most positive start to the year emotionally and health-wise, but we're hoping for a turnaround very soon!

Tonight the boys and I did our standard Friday pizza-movie night together and we snuggled up like crazy on the couch. Afterward we had a silly dance party that Sammy in particular thought was a riot. It ended with him leaning over to kiss me on the cheek. I turned my head at the last second, which caused his smooch to land on my lips. He said, "HEY! You gave me LIPS, lady!" The three of us laughed for five minutes straight. These boys crack me up!

Elijah has had borderline croup for the past two nights, but nothing bad enough to get him up to take medicine for (THANK GOODNESS). He threw up at school yesterday and stayed home with me today. Sammy hasn't felt 100% all week, but has pushed through his week. I woke up this morning with a sore throat and headache. This week I started making spinach smoothies again, which I'm hoping will help to boost our immune systems! Darn winter!

Both boys have started chess class and I think it's so good for Sammy to be a part of that now with his brother. School has been going well for both boys. Sammy got ALL Es on his report card this week (Exceeds grade level) and Elijah is doing GREAT, as well (he now gets the ABCDF scale in 4th grade and has done better than we had hoped). We were so proud of both boys!

My cuties and I have some fun things planned for our weekend! Hopefully you do, too! Thanks for checking in.

Boys on skis

Elijah started skiing with the Courage Kenny program and he is rocking it! Last year he made such huge progress with snowboarding, so I figured skiing would be great to try. His instructor is AMAZING and I could not have asked for a better match. He instantly made a genuine connection with E and understood that getting him down the hill and on the chairlift needed to happen asap in order to alleviate anxiety. That boy skied down an entire hill 2 or 3 times on the first day (with assistance, but still so cool).

My silly boys have been in such a creative zone lately. I love watching them play and seeing how their little minds work. I'm so grateful that they have each other and that they (usually) love spending time together. Last night I walked into the bathroom after bath to find that they had transformed into Frankensteins.

I bought a used pair of skis and boots from a friend and put them on Sammy this week. This is a HUGE huge deal since he's been declaring for years that he would "never ever ever" go skiing. First step was our yard. Next we'll try a bunny hill and magic carpet. :)

The boys have their daily moments, but for the most part have been doing so well. Elijah has had many great days in school and overall has had great days at home, too. I've been in my usual post-holiday funk but hopefully will get my head above water soon. That's all I've got for now! Thanks for stopping by!

Love is in the house

It has been sad to say good-bye to winter break. I LOVED the precious time I got to spend with my boys and I was secretly so sad to drop them off at school on Tuesday morning after spending two and a half weeks together. Having my cuties within earshot and arm's length makes me a happy mama. There is certainly value in them going to school, but I adore my time with them. They won't be "little" forever so I relish every moment I can get.

Over break my boys decided it was time to watch Star Wars! We watched the first three movies together over the weekend and we all enjoyed them. The boys asked a TON of questions (so many that it was hard to hear what was being said most of the time) and they are excited about the next few. 

Sammy and Elijah have both lost teeth over the past few days, but Sammy's loss has added an extra lisp to his already cute lisp. I just love it when those top front teeth go missing. The cuteness is almost too much to handle.

Since break, Sammy has been extra into Mommy (lucky me!). Every morning (after getting dressed of course, because his is Mr. Responsible & Organized) the first thing he does is crawl into bed with me, usually after asking, "Anyone want some Sammy snuggles?!" And this is when the I-love-yous begin for the day. Lately he's been saying, "I love you more than you love me!" And I say, "Not possible!" And he says, "Always possible!" Repeat about 100 times. I love it!

While I'm on the Sammy topic, he has shown such incredible determination lately. This fall Elijah took a chess class at school and became really good at it. Sammy saw this and decided he needed to learn, too, so he watched his brother play and within a couple days he knew all the rules and could hold his own. I thought this was impressive! Then the other morning he decided that he needed to learn how to play the recorder since Elijah knows how. He asked E to teach him the notes and within 15 minutes could read music for and play Jingle Bells. Nice work, Sammy!

We are coming up on the time of year when we see a bunch of Elijah's specialists. Next week brings a couple appointments and we expect everything to check out fine. We have seen improvements in some areas and regression in others (like following directions). Sometimes I have to stop and remember all that he has overcome. It's amazing to consider how well he is doing in spite of the many big hurdles he has had to leap over! We are super blessed and have two amazing boys!

Elijah starts SKIING tomorrow, wooo! I'm buying Sammy a used pair of skis and boots tomorrow so we'll see if I can get them onto his feet without too much fuss. I hope you all have a warm weekend!

Merry Christmas 2016 and Happy NEW YEAR!

This is my last post of 2016! I didn't write much here this year because, well, we were busy! My boys and I reflected back on the year today. WOW. What an incredible year. We made tons of memories that will never be forgotten. It'll go down in the books as one of our biggest. I am grateful for everything that 2016 brought our way. We are praying for another year filled with great memories, adventure, family and good health!

This month was crazy. At times I wanted to hide in bed for days, but we kept marching on and made some great memories with loved ones. We hosted Dan's family on Christmas Eve, my dad and stepmom flew in the following day and the day after we had my sisters and their families over. We have the best families and it's another big thing we are grateful for!

We have been loving our new house! It has been a comforting spot for us all and I don't think there's another family who would love it and feel as blessed to have it as we do. We say prayers of gratitude every day.

The boys had a fruitful Christmas. They received a few prize gifts and were genuinely grateful for everything, even though they didn't get everything they wished could have fallen into their laps. We made an effort to focus on giving more than ever this year, so hopefully it rubbed off a bit.

My dad and stepmom left today after being here for almost a week. We loved having them here and both boys were so sad not to have their Grammy and Gramps tuck-ins tonight. More fun memories with them were made this week.

We accomplished a momentous feat today. The glorious locks were chopped! I personally love long hair especially on Sammy, but both boys looked so super handsome afterward. Look at my handsome boys!

I am going to make more of an effort to get here more often this year. There are constantly so many funny/cute things coming from these boys and I need to be better at writing them down. More to come soon! Thanks for checking in!

December update!

Where has this month gone? We are still here! We have been swept up in the busy-ness of the season. The boys are wrapping up their last day of school before winter break as I type. Due to impending snow, they are getting out a bit early today. They will have 2 1/2 weeks off of school! I've worked hard to get Christmas shopping and wrapping mostly done by today so I can spend quality time with them next week and the week after.

I don't have a ton of share-worthy info, but wanted to check in. Dan and I are spending a night away from home tonight while the boys sleep over with their cousins. It'll be a fun night, all around! Tomorrow it is supposed to get as low as -25 degrees (without factoring in wind chill), so we will be all cozied up!

My next post will be more exciting. :) Thanks for peeking in! Enjoy your weekend!

Thanksgiving 2016

Happy belated Thanksgiving 2016! We survived hosting in our new house. We had 16 people here and everything went smoothly. The food was good, the company was great and our house was officially broken in. I forgot to mention that we also had three big dogs here. It was a full house!

I woke up the following day SO EXCITED for our traditional day-after-Thanksgiving family time. We picked up a Christmas tree the easy way this year (no tree farm), which diminished the experience a bit but gave us more time at home together. The boys have been bouncing off the walls, so excited that it's finally Christmas season.

We are constantly working on getting settled into our house, but we've been able to relax and enjoy it, too. I still ask Dan to pinch me at least once a day because I can't believe we have such a cozy perfect-for-us home. We have MUCH to be thankful for! It is crazy to think back to six or seven months ago and how much we've done and also how much has changed for us since then. Wow! We are so blessed and grateful for everything that has transpired.

Elijah gets a new behavioral aide who will be coming into our home starting tomorrow (she'll come one or two evenings/week after school). E is still loving chess and music class and Sammy is constantly creating art projects that are spread out alllllll over our house. :) The boys have a full week of school this week so we need to wrap up some dreaded homework this evening and prepare for the week ahead. Thanks for peeking in and I hope your Thanksgiving was wonderful!

Croup: Season 9, Episode 2 (Elijah) and behavior/school updates

Apparently we are finding plenty to do because time is passing way too quickly. Life is full right now! We are managing everything ok, but Dan and I are starting to show signs of being over-extended and exhausted. I cannot imagine what it will feel like to be fully unpacked and settled in our house. We still have so much to do. And we're hosting Thanksgiving. And and and...it's always a million things. Last weekend we pulled out our RV to give it a final clean-out before storing it for the winter and it was bittersweet! That was our home for four months. We made incredible memories in it. Life was SIMPLE while we lived in it. It made me both happy and sad to pull everything out. We will say our official winter-goodbye this coming weekend.

Two nights ago I recognized a few signs that Elijah might get a croup episode. I said, "Croup alert tonight!" and sure enough, a couple hours later we heard the stridor. It was a mild case, but of course it's never fun. We gave him a tiny dose of oral steroids and Dan sat outside with him for a bit. After that he was just fine, minus a few sniffles and sneezes that he's had since.

We had Elijah's fall school conference today and it was great! He has the BEST fit for teachers this year. They take the "rough" times in stride and certainly know how to bring out the best in him. So far this year, Elijah has shown interests in a few new things! He loves science and music. He just got a new recorder and he has been practicing it faithfully and learning how to read music. We've had a few people tell us that he has begun opening up a lot at church (the boys go to a separate area from us) and he's even been dancing to worship music comfortably in front of everyone. I love it! I have always had a feeling that music would be the bridge that connected him to church and Jesus. His teacher told us tonight that he has made some meaningful friendships in class this year (all girls, of course). There are a handful of girls who help to keep him on track (LOVE this) and really look out for him and care about him. He is keeping up with school work just fine and knows way more than he believes he does.

As far as behavior is concerned, his teachers explained his school behaviors to us and they basically mimic his home behaviors. This is good because he's being consistent! He has good days and he has tough days. I can tell within two minutes of spending time with him in the morning which kind of day it's going to be. Good days are really good. He doesn't defy authority, he completes tasks without complaining and he is generally good-natured and kind to everyone. Most days are good days. Lately I'd say we get at least four of them/week. The tough days can be really tough. There is a lot of talking back and refusals to do anything that's asked of him. He seems to want to anger and provoke everyone around him. I'm sure the tougher days are related to not sleeping as well through the night, but we aren't sure what causes that. We got new comfy (BIG!) beds for both him and Sammy and have made their rooms safe, comfortable, dark and peaceful places. I know that sometimes anxiety intrudes his mind and it's so hard to stop once it starts. We just continue to give him consistent love and care and pray that over time the good days will happen even more frequently!

A Sammy Prank :)

Sammy is loving first grade. His classmates and teacher could not be a more perfect fit for him. He is SO. Smart. He puts together and solves math problems that I'm pretty sure 5th graders can't do. His handwriting is perfect, he aces all of his spelling tests and he never has to be told to do his homework. He is such a sweet, kind little soul. He always has been, but it's been fun to see that sweetness in him even when kids around him start talking about more mature things. Despite his sweet spirit, he has not lost his strong will. He can so easily get mad at any one of us for something as simple as being corrected when using bad manners. He gets SO MAD and can say hurtful things and even threaten to run away from home. His latest tactic is running out to my car when he's upset and sitting in it until he cools off. Smart! He always comes back in with apologies and love.

It's a busy season for us, but a fun one, too! There are so many good things coming together for our family. I have to learn to bite off just a little bit at a time and not expect everything to come together overnight! Thanks for peeking in.

Croup: Season 7, Episode 1 (Samson) ...and so much more!

Well goodbye, October! Jeez, that month went fast. I'm so far behind with my posts. I hope you're still reading! Let's rewind to two Thursdays ago..

Sammy got a scary croup episode right in the middle of the day. We had just pulled into the driveway after school and he could hardly breathe. He looked at me with panicked eyes, so I rushed him inside, panicking myself, and got a small dose of oral steroids down his throat. I sat with him outside for a bit and decided to hold of on the epi neb until absolutely necessary. We never had to take the neb and his breathing became much less scary. As always, his body held onto the croup forEVER, but thankfully it never became that scary again. Two weeks later, he still has a lingering cough from it.

Along these same lines, sickness has totally taken over our family for the past few weeks. It started with stomach issues for me, then last week Sammy threw up before school one morning followed by some tummy troubles for Elijah. We all seemed to be healing when, two days later, Elijah started throwing up. A few hours later, Sammy puked ALL OVER his brand new mattress in the middle of the night. A few hours later he spilled his puke bowl onto his newly changed sheets. Two days later Elijah threw up again. The next day my stomach was bad again and I was bed-bound for 12 hours. A few hours later Dan was throwing up and he spent all of today in bed. UGH! We are ready for healing!

The boys, my little minions, had such a fun Halloween this year! Our new neighborhood is the PERFECT neighborhood for trick-or-treating, with it's big beautiful trees and friendly neighbors. Sammy was so excited and happy that he was skipping from house to house and giggling and telling me every ten seconds that this is the BEST HALLOWEEN EVER!!! The boys of course got tons of candy, but we've been rationing due to above-mentioned tummy troubles.

We have been trying to squeeze a few things in between the sickness, but honestly it has been frustrating how slow the unpacking process has gone. I just can't seem to get anything done! Soon. Right?

Not as much time will pass before my next post. Thanks for peeking in! Go INDIANS! (Cheering as we type, Gramps!)

All moved in!

I love this pic of Buddy and his half-brother Max playing. They are so funny when they play. :)

We are in our new house! It's been a bit of a crazy week, but we are LOVING our new abode. Going from four months of RV living to being in this incredible house is something I can't even explain in words. We all have been feeling like it's not real. Elijah keeps asking if he's in a dream. Sammy told me that he feels like we're visiting friends. We have spent the past two days getting our things out of storage and unpacking. We have sooooo much left to do, but it's more than livable and we're loving it. None of us want to leave and when we have to go somewhere we get sad!

Quick update on last week's urology visit.. The dilation Elijah had done in June has done the trick so far! This is great news and something we didn't expect. We have had to cath Elijah daily (just takes a few minutes) and will continue to do that for forever if it means we can avoid another surgery.

Although this is a super exciting time for our family, it IS a big change. Elijah particularly is having a rough time adjusting to being in a different place and sleeping in a new room ALONE for the first time since he was three years old. Behavior has been really really challenging, but things will settle down once we adjust.

Elijah has a hearing check-up tomorrow with ENT and both boys have Wednesday through Friday off school. Yay for more home time! If you want to see us in the next few months, you'd best come visit because prying us away will be tough. :)

Cardiology update and corn maze pics!

I could just squeeze these two cuties to pieces! Elijah has had a few rough days (ugly at times), but due to a double dose of very sad news at school we are keeping things in perspective. Last week the dad of one of Elijah's classmates died and last night the mom of one of Sammy's classmates died. That's hard for adults to process, so I can't imagine what kids must think of all of that. Sammy especially is so sensitive and takes this sort of thing to heart. We'll have to have some talks in the next days and weeks.

We checked in with Dr. G this week for E's standard six-month cardiology check-up. Everything checked out good! Function and pressures are fine. His valve is in the "mild" range for stenosis for the first time since his last OHS, but that isn't alarming. Dr. G said that when his next big growth spurt happens, we'll likely need to discuss surgery. We go back in six months! Wooo!

The weather in Minnesota has been GORGEOUS. We've been spending every morsel of time outside that we possibly can. Last weekend was one of the most perfect weekends of the entire year. After our Saturday morning routine where one boy goes to boxing class with Dan and the other comes to the club and coffee shop with me (I've been LOVING this quality time with each boy), we made our yearly fall trip to the corn maze! There have been years that we've been bundled up in boots, hats and mittens, so this was quite a nice experience. We hit all of our usual spots, but the favorite was (as always) the corn pit.

The boys love the parakeet house and Sammy thought it was so cool that a bird swooped down and landed right on top of his cute little head.

Then FOUR birds decided that Elijah's treats were best.

Both boys enjoyed the farm animal area more than ever before. It is so fun to watch them notice new and different things every time we come. Elijah was especially drawn to this cow. He kept walking back to him and just gazing deep into his eyes. There is something about him and animals. There's a connection there for sure.

I'm heading out of town for a conference tomorrow that I'm super-duper excited about. I'll be in Austin till next Tuesday and honestly, one less body in our RV for a few days is probably a good thing. Living "normal" life in there is making us all a little bit nutty. We are ready to be in a house. ALL of us are ready ready ready. I fly back home Tuesday at noon and house closing is at 4:00!

Have a great rest of your week and weekend! My next post will be written from our new abode!

Pretty sunsets, needle-induced tears and large stuffed animals

Did I tell you that I have a new photo assistant? He's a super hard worker, he has a great creative eye and he can easily make people laugh. His name is Sammy! I brought him with me to a photo shoot last weekend because he was wanting to earn some money (this boy is so responsible with money). He took his job seriously and worked hard. He's super awesome on the other side of the camera, as well!

We have been staying at a new campground this week and it's been an experience. It's beautiful when you look past the other RV-homes! We've seen some beautiful sunrises and sunsets.

Buddy has been nutty since his surgery a few weeks ago. I've threatened to give him away a handful of times, which always results in the boys begging me to change my mind. We love our dog, we love our dog, we love our dog.....

On Tuesday I brought Elijah to Children's for a blood draw (ordered by his new Genetics doctor) to take a more thorough look at his genes and possible resulting genetic disorders. This is something we've done before but detections can be made that weren't possible waaaaay back in 2008. E hasn't had a blood draw in a while, so I didn't know how it would go. He was anxious leading up to it, but super brave through it. I saw the needle go in and the nurse began digging for the vein. I know how this feels. It's awful! Elijah began BEGGING her to please take it out, please stop hurting me, as tears streamed down his face. All I could do was hold his shoulders tightly, tuck my head behind his back, pray and of course cry. It was minor in the grand scheme of pains he has endured, but it was awful. Maybe because he's been through so much, I could barely handle it. He bounced right off the lab bench and smiled after the band-aid had been placed on his arm, but my tears wouldn't stop. I cried all the way to the elevator, through the hospital, to the parking lot and halfway back home. Elijah kept reminding me that he was fine, that sweet boy. Oh, I also cried through the entire trip to the hospital gift shop (which I partially blocked out), where I purchased two large and expensive pillow pets for E and S. Watching my boy endure pain = new stuffed animals! :)

I will be curious about these results. There is apparently more thorough testing that can be done, but our insurance won't cover it at this point. Hopefully soon!

Monday is Elijah's 6-month heart check-up with Dr. G. We always approach this appointment with trepidation, as we never know what to expect. We've had a good streak, so I'm hoping it'll continue!

We head back to Dan's parents' house tomorrow until we close on our house. We are all super excited and so ready to have a home larger than 200 square feet. We are ITCHING to get in and get settled.

Thanks for peeking in!

Croup: Season 9, Episode 1 (Elijah)

You know those cycles Elijah goes through where things are just off? Yep, we're here again. I won't go into the gory details, but he is being awakened almost every night somewhere between 1:00 and 5:00 with tummy troubles, which is affecting sleep. I remember this same thing happening a few years ago right around this same time of year. Tummy affected sleep affected behavior affected school affected life affected tummy affected sleep and on and on. We've cut way down on his sugar and dairy intake and this seems to help a bit. One thing about our summer RV trip is that we did not eat as healthfully as we normally do, so I know that has played a role. I've been trying to be much more intentional about getting healthy food into our bodies.

Elijah was up with croup for the past two nights to commemorate the 2016 Croup Kick-off! Thankfully with the help of oral steroids it has been very mild. But present enough to make sure he doesn't get any sleep! Last night he was up at 2:00 with a mild barky cough so mild that a neb wasn't needed. I would have taken him outside for some soothing cool nighttime air if it hadn't been raining. I tucked him in and told him to go back to sleep and he did not sleep another wink. How do I know this, you ask? Because his bed is two feet from my bed and I listened to him move around and talk for the ENTIRE REST OF THE NIGHT. His croup was just fine at 7:15 when I finally peeled myself out of bed, but I kept him home from school so he could sleep off the rest of the sickies and get caught up a bit. We just woke up from a little nap and we're both feeling better.

All four of us have been fighting little sore throats and runny noses and coughs. Sick season is here! And to join in on the fun, Buddy has begun acting up like a wily teenager. Having been cooped up for 2 weeks after his surgery, I think he is DONE with it. Yesterday while I was trying to wrap up homework with the boys I noticed that Buddy was being way too quiet outside. Usually he sits at the door and whimpers if one of us isn't out with him. We peeked out to find that he had chewed the cupholders and a head cushion off of our two favorite lawn chairs. I was so. mad. I moved the chairs out of his reach and went back in to finish homework. TWO MINUTES later I looked out to see a gigantic hole that had been dug in my in-laws beautiful green front lawn. I just about died. I put him in his kennel and kept him there until Dan got home. I realize it's pointless to be upset with and ignore a dog who has tons of pent-up energy, but I was and I did. I threatened to sell him and the boys begged for me to change my mind. The jury's still out.

In the midst of tons of good, positive, big things that are happening for our family, some little things are working against us. It's one of those seasons where we have to work extra hard to overcome the little things. We are trying! Swimming hard upstream! We'll get there!

Have a great rest of your week! If you know how to repair lawn holes, stop by any time! ;)

Neuropsych and IEP updates

We had two BIG meetings in two days. Yesterday Dan and I met with Elijah's awesome neuropsychologist to discuss results from recent testing. Dr. M asked to see Elijah back before fourth grade because significant changes occur in the brain right around this time. The testing showed similar findings from the last round that took place at the end of first grade. His verbal skills exceed visual by a lot. He is still a verbal communicator and learner and struggles with visuals. The good news is that he has made gains in both areas, but there is still a large gap between the two. He still has major deficits in self-awareness, organization and executive function.

Nonverbal Learning Disability is still an accurate diagnosis that describes his challenges well. Dan and I were amazed to learn how much the testing revealed that he retains. His brain retains literally almost everything that goes in, but getting him to explain it or "prove" that he knows it is the challenging part. It takes a unique strategy administered with persistence and consistency to reveal all that he knows.

There is a test Dr. M gave him that had such cool results. He showed E an abstract picture that contained various random shapes that were all connected. He let Elijah set the picture in front of him and asked him to draw a replica of it. A typical brain would look at the collection of shapes and make a plan (I'll start with the big rectangle and I see that there's a big X going through the middle; now I'll draw the triangles on the sides, etc). Elijah's brain sees a chaotic mess, so he drew something that looked somewhat like the picture but it was disjointed and with no order. Dr. M removed the picture and 30 minutes later asked him to draw what he remembered of it just from his memory. Elijah drew a couple individual shapes that weren't connected and looked nothing like the original drawing. THEN the really cool part.. 30 minutes later Dr. M showed deconstructed parts of the same picture to Elijah one at a time along with trick parts that had NOT been a part of the picture. He asked him to identify the parts he remembered being in the picture and he got 22/24 correct. Amazing! The results of this test tell us that he retains MUCH more than he is able to express.

Coincidentally, Elijah's annual IEP meeting was this afternoon. I was so glad to have fresh words from Dr. M in my head to relay to his teachers. We reiterated everything he told us about how to create a successful learning environment for Elijah and even shared his 18-page report with them. This was one of the easiest, smoothest IEP meetings we've ever attended. His classroom teacher and case manager had "the look" of understanding after Dan and I talked for just a few minutes. Last year and the year before I remember talking until I felt like crying and looking up to see eyeballs glazed over.

We explained that he is a VERBAL learner and that he needs to understand the PROCESS, not the problem. Immediately they began formulating a plan to create verbal and written scripts for him while he's at school. YESSSSSS!!!!! This is what we've been trying to get his educators to understand since that first round of testing! Such relief.

I've been a bit on overload thinking through all of this. Processing information is exhausting! :) Buddy is healing from his little surgery and is super needy. We are all so ready to move into our new house. And we STILL haven't received results from Elijah's day of mega-testing in August. In my gut I know all is well or I'd push. We'll get results for sure at his next urology appointment in early October. That's all for now! Thanks for peeking in!

A Letter to My Sweet Sammy

Dear Sammy,

Today isn't your birthday or any other special day. It's just a random rainy day in September and you happen to be on my mind. I visited your first grade classroom this morning and it always surprises me how excited I get when I see you. I had dropped you off at school only thirty minutes before, yet seeing your sweet self reading a book on the carpet was the highlight of my morning.

I always tell you how lucky I feel to be your mom and the other day when I said that, you replied in a typical thoughtful Sammy way: "If someone else was my mom, would you be jealous?" I totally would. I know I'm partial because I am your mom, but I'm grateful that I get to be around you so much because it's just so nice. Not only are you deliciously cute, you are also thoughtful, considerate, kind, complimentary, sweet, creative, clever, funny, witty, smart and snuggly.

Sometimes you will use a word that is well beyond your years or you will say something so thoughtful that I can hardly believe it just came out of your mouth. A few days ago you asked me to solve the math problem 1+1. When I said "two," you said, "Nope! The answer is Jesus, know why? Because Jesus is always the answer." Then last night you began worrying about tornadoes because this is something you worry about a lot (proof that you're my son). You asked me if there were a tornado nearby, would you be able to grab a few favorite things before finding safety? Then you said, "No, never mind. I won't need to grab anything because Jesus is all I'll need." I love that these truths are in the forefront of your mind and that they comfort you.

I want you to know what a gift you are, Sammy. Not just to me, your lucky mama, but to so many people. You are a good son, brother, student, grandson, friend, cousin and nephew. You light up everyone's life with your thoughtful words, cute lisp and generous snuggles. You complete your brother, just as he completes you. You and Elijah complement each other in such a special and unique way. Even teachers at school notice it. Yes, you have your daily "brotherly" moments, but I absolutely love the bond the two of you share. It is precious, rare and so wonderful.

I know you sense that sometimes Elijah needs extra attention from Daddy and me. Instead of getting upset about this, you help us out. There are times when you offer help and there are times when just being a good boy is the most helpful thing. I notice your patience and grace and I want to make sure you know that we see that.

For your entire life, you've been coming along to your brother's various appointments and therapies and you've never complained about sitting in another waiting room or taking another ride in the car. I think you've always known deep down that this is just how things are meant to be for our family. I want you to know that you are just as important as anyone else, Sammy. Elijah needs things that you don't, but you also need different things that he doesn't.

You are LOVED. Jesus loves you so much, Sammy. Daddy, Elijah and I adore you and you are Buddy's favorite pack-mate. You are a gem of a little boy and it's so much fun watching you grow into the person God has in mind for Sammy. I love you, sweet boy!

Love, Mom

State Fair 2016, dr updates and new digs!

Elijah's tummy has not been the same since the testing we had done at Children's last week. Tummy troubles have kept him home from school Friday and today. Things were bad Friday, better Saturday and Sunday and again at 3:00 this morning he was throwing up. The doctor we saw today thought it was a virus that has worsened with sugar. Today I didn't let him have a single bit of sugar and he's been so much better. Praying for a better day and SCHOOL tomorrow!

Yesterday he seemed well enough to make our yearly State Fair trip and he did great all day (uhh...till his began digesting the greasy, sugary food). We hit all our favorite spots, plus some. Pics are below!

E had an appointment with a Genetics doctor this morning. It's one that I'd scheduled earlier in the summer at the suggestion of Dr. M, our wonderful developmental ped. We haven't seen genetics since 2009 when Elijah was two and at that point they had done extensive testing and hadn't found an underlying issue for his congenital anomalies. Dr. M thought it would be worth another visit, seven years later. Advances have been made in science and other anomalies have popped up with him since 2009. Dr. S agrees with me that there is most likely an underlying genetic reason for everything. We will do a few in-depth tests in the next couple weeks. The REALLY in-depth tests are super expensive and aren't yet covered by our insurance, but the hope is that within the next year they will be. What is the point of doing this testing, you ask? Good question! If we do find a genetic underlying cause for his congenital issues, then we would know for other things to look out for (organs to keep an eye on, for example).

One of my weaknesses happens to be falling into pits of fear and becoming totally consumed by it. There was a two-hour period of time today when I fought really hard to stay out of that pit. Elijah's vomiting has worried me and then his blood pressure at this morning's appointment was 135/90 (!!). After that he got a BAD headache that lasted nearly an hour. He gets these occasionally, but they've never been so intense or lasted so long. I wrapped my arms around my writhing boy and cried and prayed so hard for relief for him. We thought the headaches could be related to his spinal cord retethering (part of last week's testing), but those preliminary results show no retether (both good and bad news). The high blood pressure is likely because of this little tummy bug as well as some mild dehydration (conferred with Dr. G's nurse about this, just to settle my nerves).

All of these things pressed fear down hard on me today. I had a moment at Appointment #2 as I stared down at Elijah's flip-flops while he was being weighed for the second time. There was a moment of clarity when I realized: I DO NOT have to take on this worry! My job is to take care of my boy and I've definitely got that under control. There's someone else shouldering the worry and it's so easy to forget about that and become wrapped up in total fear. We go in and out of these cycles of medical worry and unexplained symptoms and in the end they stretch but also strengthen us. 

Saving the best news for last, we very quickly became home owners over the weekend! The third house we looked at was THE ONE. All four of us loved it instantly. It's spacious, sits in a quiet cul-de-sac, has a huge fenced-in yard, space for our RV, a detached building that can be used for an art/photo studio and even a POOL! We placed an offer a few hours after viewing it and a few hours after that the offer was accepted! The house is on the older side, so we are praying for a good inspection on Wednesday and then we'll be in the clear. We're super excited! We'll move in mid-October.

Thanks for peeking in!