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!

The Day of Tests

After Elijah's most recent urethral surgery in June, a doctor expressed that perhaps we should check into the possibility that his spinal cord has re-tethered. Since we are still dealing with potty issues AND since he occasionally experiences leg and head pain, we all agreed that it was worth exploring. And apparently cord retethering is fairly common. We set today aside for a handful of tests and although it was only the third day of school, we felt we should get it out of the way. I completely underestimated the time and energy that the day would require of us. I thought we'd be in and out in a couple hours, but we were there for seven and it felt like more. 

Elijah was presented with nitrous oxide (no sedation, thankfully) and just about had a panic attack when "the mask" made its appearance. He thought for sure that equaled surgery and our poor boy melted down. It took all the coaxing Dan and I could muster to get that mask on his face. Once the gas did its job he calmed way down as we talked non-stop about waterparks and water slides and oceans and mountains. He had to be cathed for a few hours and for a handful of different tests that checked his bladder function. We won't get full results until we visit with Dr. R, but we gathered that things seem to be mostly fine on that front, minus the fact that he has a small bladder.

The MRI at the end of the day was a bit of a fiasco. At the last minute the nurses realized that the stents/coils in Elijah's chest (put there during heart surgeries) had not been "cleared" to be near an MRI machine. I knew everything would be fine, but appreciated that they wanted to be positive before moving forward. The MRI was done on E's spine and was intended to rule out the re-tethering. The actual test was a bit stressful for Elijah, even with ear plugs AND a very cool movie that he watched through a pair of glasses. We won't get results from any of the tests for days or even weeks. We are glad to have today behind us!

As always, this boy never stops amazing me. He walks into that place not only willingly, but with a big smile on his face and a skip in his step every single time. If I were him, someone would have to sedate me or carry me in kicking and screaming. We did A LOT of sitting around today and he was so patient and his positive attitude never wavered. We had a chunk of spare time before the MRI and at this point Dan and I were feeling so proud of how patient and brave he'd been, so we brought him to the hospital gift shop and got him Beavy the Beaver. He LOVES this guy. He sat for the rest of the time and talked to him as if the beaver were truly speaking back. "Mom, Beavy didn't understand what you said. Can you repeat it, please?"

Elijah was practically begging for bed tonight he was so tired. We are all going to sleep well! Thanks for peeking in!

Back to school AND blogging!

We're back in business here on our family blog! We had an amazing summer and now the boys are back in school, Dan has officially started his new job and we'll be looking for a house without wheels soon. Elijah and Sammy both seemed to have a great first day of school today, minus some very sad news that Sam received at the end of the day. His best friend Ryder will not be coming back to the same school this year. Sammy has been talking ALL summer about how excited he was to see Ryder again, hug Ryder, play at recess with Ryder, be silly with Ryder. He is crushed. His sweet little sad face tonight just about broke my heart. We had lots of talks about how this is a part of life and how he will make new good friends.

Elijah saw his bff for the first time all summer. It sounds like they were super happy to see each other again. We are so excited to see what first and fourth grades will bring for our precious boys. Sammy has his same wonderful teacher from last year and Elijah's teacher seems great! He also has a new special education case manager (his fourth one since starting kindergarten), but she worked quite a bit with him as a para toward the end of last year and knows him pretty well. Overall we feel really good about everything!

Dan has been out of town for work for the past week and things have been a bit extra challenging since he's been gone. Buddy came down with some sort of puppy virus, so he we have been quarantining him while temporarily parked in Dan's parents' driveway (who happen to have a tiny new puppy). It has been quite the ordeal keeping him out of the puppy's sight because if he sees the pup (who happens to be his cute little half-brother!), he will want to play. Buddy has been sooooo needy and whiny and in my opinion depressed. I feel like I have taken better care of him in the past week than I have my boys! Every time I turn around he's sitting and staring up at me with a pathetic but sweet look on his face. I brought him to daycare today since he's been on meds for a week and hasn't coughed since Friday. He was EXHAUSTED when I picked him up. Mission accomplished! And Dan gets back tomorrow, so relief is on its way!

If you didn't follow our summer adventure on my other website, you can read more here! All I'll say about it here is that it was indescribably incredible on so many levels. I feel like it's one of those experiences that I want to write in greater detail about, but the words will take time to come out. We are both happy and sad to be back home. Coming back to Minnesota was almost confusing for me. This is "home" but we now drive our home. In many ways it's nice to be back on home turf, but it's more sad than happy that we're not on the road anymore. I have been dragging my feet about purchasing a new house because I don't want the stress that comes along with it and I'm secretly hoping our storage unit full of SO MUCH STUFF burns to the ground. We haven't needed any of that stuff and I'm not sure I want any of it back. I've felt lighter and better without it!

I hope to continue posting on here once/week minimum. I hope you'll stick around!

Medical updates and goodbye for now!

This post is bittersweet. It is a hello and also a temporary goodbye. Elijah has had a handful of medical appointments in the past few weeks, which I'll do a quick update on..

Urology: We are cathing him daily in high hopes that he will NOT need an extensive reconstructive surgery. We're praying hard for the cathing to work. We will check back with Dr. R in August and go from there.

Developmental pediatrics: We have stretched E's current Strattera dosage out for a loooong time. Behavior has been gradually getting worse (the past few weeks have been pretty crazy), so we are upping the dose starting tomorrow. Pray with us for improved mood and behavior soon! Dr. M also suggested a re-visit to genetics to get a handle on the reason so many things have surfaced in the past few years.

Neurology: We will be scheduling an MRI for August to see if E's spinal cord has retethered.

Pulmonology: Severe croup continues to be an issue with Elijah, but it does get better with each passing year. Still, though, we need to have emergency croup meds on hand just in case. I ALWAYS love visiting Dr. K because he appreciates our sense of adventure and values us as people and that means so much. And of course, he takes amazing care of our oldest boy.

Now for the FUN! As of next Friday, our new residence will be THIS beauty! Our house SOLD, Dan lost his job and we are hitting the road!

We will say goodbye to our home on July 1st, when our RV ("The HQ"...named by the boys) will become HOME for us for a while! We are all super excited for this journey. Life has been stressful and so crazy leading up to this point. I cannot WAIT to be on the road with my beautiful boys. I apologize if I haven't explained the journey thoroughly here, but you can find details on Pip and Ebby!

See you back here late August! Till then, check in on social media or on Pip and Ebby!!

Molting

I am amazed at the way EVERYTHING is changing in our lives right now. I feel like we are caterpillars, just totally changing from one creature to a completely different one. I remember reading somewhere that every seven years human bodies basically transform into completely different ones because the cells have all regenerated. That is us right now. We are on the verge of complete regeneration.

We have had some major developments occur in the past few days and weeks. Dan lost his job on Thursday, which was a shock but blessings are already coming from it. Today we SOLD our house and we are super excited about that. Another huge thing is happening on Monday and I'll report back about that next week!

On Friday Elijah started horseback riding through an incredible organization that mentors kids with disabilities. Going into it, he wasn't so sure. I heard a lot of "I don't want to do this!" and "This isn't going to be fun!" (add some whining to those comments..) His mentor started with having him do chores. I was not sure how this would go, considering how difficult it is for me to get him to put his shoes on. He did chores on their farm for an entire hour! WHAT?! And willingly! For the last half hour, he learned how to lead Trixie the horse and also make her stop. He was a natural! When the session was done, he said, "That wasn't so bad, Mom! I think I'd like to go back!"

The sad part is that we are going to have to take a chunk of time off from horseback riding because we have something else to do first. Elijah will attend two more sessions and then be back in the saddle in August!

Our little jockey! :)

Thanks for peeking in! More soon!

Goodbye to kindergarten and third grade!

Since my last post, the boys have said their good-byes to kindergarten and third grade. I cannot beLIEVE this year is done. What in the world just happened?! Look at how grown up my little Sammy looks now!

We are so thankful for so many things from this school year, which is probably why it seemed to go so fast. It was EASY, especially compared to the previous two years. Both boys had amazing teachers, made friends, made tons of memories, went on field trips and adventures of many kinds and learned a ton. I swear Sammy is destined to be a mathematical genius and I cannot believe some of the equations he conjures up and solves. Both boys made tons of progress in so many areas this school year. We are so proud of them!

Elijah got his catheter from last week's surgery removed on Monday. It was a piece of cake taking it out and once he realized how "free" he felt, the look on his face was priceless. "I can swim?" "I can climb at the park??"

We found a PCA who has started coming to our house and helping to keep Elijah on track this week. She is great! I greatly appreciate the help. I think the boys are adjusting to the "no-schedule schedule" that summer always brings. It is nice not having so much structure, but it is also bad for Elijah as he thrives on that.

This week and next, Elijah has appointments with SIX different specialists for check-ups. One of those appointments came up a bit unexpectedly after the surgeon last week brought up the possibility of Elijah's spinal cord possibly being re-tethered. He had a tethered cord repair when he was 2 and we've always known it was possible that it could become tethered again. When she asked if he has experienced headaches or leg pain, Dan and I froze a bit. Both of those symptoms have popped up intermittently over the past 6-9 months with no explanation. So next week we will bring him in for an MRI which will tell us if his cord has indeed retethered. If it has....ugh. That first recovery was a toughie. But on the other hand, it could be the reason that potty training has dragged on and could also be an explanation for the strange random leg and head pains.

We've had a handful of showings on our house, but no real interest yet. We're praying hard for a sell within a week or two! We'll see what's in store. In the meantime, we are trying to make the most of our early summer weeks. We are making lots of trips to different parks. Tomorrow we may venture over to the pool. The boys are very excited about that.

I'll end with Sammy's most recent math problem he presented me with. On the way to an appointment yesterday he said, "Mommy, what is 6,400 plus 6,400?" In my head I was thinking, Goodness, there's no way he could figure that one out. I asked what he thought the answer was and he said, "Let's see... 4+4 is 8 and 6+6 is 12, so... 12,800!" !!!! Seriously?

Thanks for checking in! Have a great rest of your week!!

Urethral Surgery #3

We are settled back in after a day at the hospital. As always, we experienced the hospital time warp where things went really slowly yet oddly fast. When we checked into our room this morning I was overjoyed to see our FAVORITE anesthesiologist's name on the board. Dr. A has taken amazing care of Elijah during some of his biggest surgeries, so I had to refrain from hugging him when he walked into the room.

The surgeon today was a cohort of Dr. R's, so not our usual doctor. Elijah kept referring to her as "Dr. R's sub." :) The surgery went smoothly and quickly, but we got news we weren't expecting. The doctor thought that despite intermittent cathing (which we'll have to do daily for the next six months), this is just a patch. Within a year or two Elijah will need a much bigger surgery that sounded like a pretty big deal. One step at a time! First we have to get him through a week of being cathed and we will take it from there. We will also pray for another miracle!

He was SO brave today, even with the "scary mask." We got him a pack of Pokemon cards immediately afterward as a reward for his bravery. He was SO groggy when he woke up that he could hardly form words and he kept asking the same questions over and over. Once we got him up and moving he improved quickly. By the time we got home he was requesting a grilled cheese sandwich and tomato soup (fave comfort foods). He ate endlessly and I even caught him in the fridge devouring cottage cheese straight from the container. :)

We are praying that the cathing goes smoothly at school for the next few days. We have communicated with the school nurse and she is going to help him "drain" 3x/day, which is a huge blessing. If needed, I can go in and help, too. It really is amazing how secretive they make cathing these days. No one will ever know what's going on unless Elijah spills the beans. :) And great news for him! He doesn't have to use the toilet nearly as often! :)

I have to say that on days like today it sure does help to have a faith in God. SO many times today, I just deferred to Him. I trusted his promises and let Him hold all of us. We are feeling strong, confident and faithful and that has nothing to do with our strength.

I'll end with some hospital-related funnies. All of the below occurred after Elijah had taken Versed (the pre-surgery med that alleviates anxiety)..

Dr A asked if he was going to do Kung fu while they tried to put the mask over his mouth. Elijah held up Pikachu (Pokemon stuffed animal) and said, "No, but you better watch out for THIS little fella!"

A doctor asked him if he was nervous and E answered yes. The doctor asked what specifically he was nervous about and he said, "Whatever this thing is that you're doing to me."

And when Dan put on a gown to take him back to the OR, Elijah said, "Dad, you're a pretty lady! You should put on make-up!"

Happy SIXTH Birthday, Sammy!

Happy HAPPY 6th birthday to our sweet, sensitive, kind, thoughtful, organized, creative, deep-voiced, smart, FUNNY little Sammy. I cannot imagine our family without you. You are one LOVED little boy and it's hard to believe that six years have passed since that first time we heard you cry-growl. I love you so much, my Sammy Jammy!

I think it's safe to say that Sammy had a great birthday yesterday. We spoiled him rotten. He requested a strawberry cake with strawberry frosting and fresh strawberries on top. So guess what he got! The birthday boy gets what the birthday boy requests. :)

Almost every boy in Sammy's kindergarten class was able to attend the party. The gift opening was particularly interesting (MADNESS!). It made my mama heart happy to see him running around and happily playing with his classmates. They are such a close bunch. Their teacher loves Sammy so much that she even made an appearance!

Here's the kindergarten boy crew! Plus a few cousins and Elijah's bff. :) LOVE THIS PIC!

Sammy my Jammy. I ADORE you. I love when you request mama snuggles. I love that you intensely love your family and that you request "MMMMmmmm!!!!!! SNUGGLES!!!!!!!" often.

My four boys and I are in the midst of crazed packing, purging and planning. We will have some big news coming up in the next week or so.

Thank you so much for checking in! If it is on your heart, please pray for Elijah as he will be having surgery tomorrow morning. Pray for: no anxiety in the OR, a successful surgery (the first two have been Unsuccessful), minimal effects from anesthesia and a quick trip back home. Thank you!!!