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!!

Slopes and snuggles

One week of 2016 is done! My week started off a bit rocky after catching Sammy's little sickness and also struggling getting back into the swing of things. After two weeks free of a schedule and a totally crazy holiday month, it was almost like I was experiencing Holiday PTSD. The week improved and we are getting back into the groove. By WE I mean ME because everyone else in my family seemed to bounce back without a problem! :)

Elijah is now officially a snowboarder! I signed him up for Courage Kenny's adaptive skiing/snowboarding program and so badly wanted to get him into skiing. I started skiing when I was a kid and I always envisioned my boys skiing young, too. The only openings available were for snowboarding, but I signed him up anyway. Guess what! The location they placed him at is THE SAME ski resort where I learned to ski as a kid. As I stalked Elijah and his instructors today, I discovered that he was learning how to snowboard on the EXACT same hill I learned to ski on. I couldn't help but get nostalgic and a little emotional. It's so crazy how things work out! Who would have ever thought.

I was worried that Elijah would be anxious about snowboarding, even though he seemed pretty excited about it beforehand. He did way better than I ever could have imagined. He liked having a hand helping him most of the time, but toward the end of the lesson (in the FREEZING cold) he went hands-free for a few seconds both on the way down the hill and on the "magic carpet" ride up. He was so genuinely excited about today and the progress he made. Eventually they will get him on a chair lift and possibly use a tether rope to help get him down some bigger hills. I'm so proud of him for being adventurous and willing to try new things!

I've been working on Sammy. Every time I ask him if he would like to ski with me he screams NOOOOOOO! Now that I've got Elijah on the slopes, I may just have to trick him. Sorry, sweetie, but you'll thank me later. He has started saying this week that he wants to learn how to ice skate, so I'm going to leap on that and get that boy in skates!

Dan left town for work today and will be gone through Wednesday, so the boys and I have some quality time on our hands. Today we got home from Afton and Sammy and I both CRASHED. Hard. Shockingly, Elijah (who should have been the most tired of all of us) stayed awake for an entire Curious George special. After that was a very snuggly pizza-movie night where Sammy kept insisting, "SNUGGLE ME HARDER, MOMMY!"

That Sammy. I still call him Sweet and Sassy (like the bbq sauce) because is the SWEETEST boy, but can also be the SASSIEST boy. He pushes his little limits and can get so upset when we stand firm with rules. It's like he can't help getting so worked up and mad about being told what to do and does/says things that go against his sweet nature. After a bit of time, he always feels bad and asks for snuggles. "Mommy, I'm moving to the other side of the planet! Please snuggle me!" :)

Elijah had a GREAT week at school, yay! Our new med dose was a good call and the transition time occurred over break...just in time for school, which was perfect. He got "great" reports every day this week. His teachers said that he was engaged and stayed on task and had a great attitude all week.

That's all for now! Have a great rest of your weekend and thank you for stopping in!

Second week of school...success!

The second week of school is done! Both boys have been doing great. Sammy has been dutifully picking up litter in his classroom, just as he does everywhere we go. :) Elijah has been continuing to show maturity this week, which is in my opinion in HUGE part to meds. Being used to the way things were last year, I find that I brace myself in certain situations only to find that I can relax. Example: homework! He and I have sat down three times together so far this school year and completed BIG math sheets with at most one mild complaint. Last year there would have been 50 complaints and he would have scribbled over and eventually crumpled up the paper. As was the case during the summer, his threshold seems to be so much bigger. He can handle a full day of school and therapy and homework and not be totally overwhelmed. PRAYING this continues!

I took E to see Dr. M (developmental ped) this week and he was happy to hear how Elijah was responding to the meds. He told me that just observing him in the office he seemed calmer and less distracted. We are going to try a VERY tiny dosage increase in a few weeks. We are also continuing with talk/skills therapy and Dr. M was on board with everything we are doing. We are also having someone come to our home on Monday to do an assessment for in-home skills/behavioral therapy. I'm feeling super hopeful about this because so much of what Elijah needs assistance with occurs in our home and typically in the late afternoon/evening. In addition to being his LUCKY mom, I am also his behavioral/social skills coach and it would be SO helpful to get some help with this!

And of course that's not all! :) Elijah's urethral surgery is scheduled for next Friday, but Dr. R asked that we have pre-op done a week in advance in order to get results from his urinalysis in time. Today I got a call from his primary doctor with the news that Elijah's preliminary cultures showed that he has a UTI! Today we started him on a 10-day course of antibiotics and that likely will push surgery back by a bit (we'll know for sure on Monday).

It's always something, but I want to say that the constant "action" in our lives does not bring us down. Aside from HATING the pain and anxiety Elijah has to constantly endure, we do remember that THIS IS OUR JOURNEY (not just Elijah's, but OURS..we're always right there with him). It's useless to fight what God has in store for us. If we did, we'd be miserable!

I was able to spend a bit of time in Sammy's classroom this week and it was so much fun to see him in that setting. He is thriving and growing and doing so well. I am so proud of my sweet boy! He has been a bit more tired than usual, but he has eagerly gotten onto the bus every morning and hasn't complained about a thing. He adores his sweet teacher (she is the BEST!) and talks kindly about his new friends. He literally has not said a single negative thing about school.

Today we made our yearly trip to the corn maze as a family and we had so much fun! It was our warmest year to date. I of course have tons of photos to share. Next post! Thanks for reading!

First week of school done and a surgery on the horizon

We all survived the first week of school, phew! I shed far too many tears this week. My days felt empty without Sammy by my side, holding my hand everywhere I went. But I knew he was safe at school with the BEST teacher and having a great time and that put a smile on my face. Elijah had a great week at school, too! He had some blurt-outs, but as far as I've heard nothing worse than that went down. In fact, some really amazing things transpired with him. Things I NEVER thought would happen on this first week of school. During the first two days of school he completed two math sheets (one of them with 56 problems on a page!) WITHOUT COMPLAINT. Uhh...wha?! Last year when a math sheet even touched his desk it immediately got crumpled and thrown across the room. I was so darn proud that I gave him a bit of incentive (uh, bribery) to continue with this. I offered an Inside Out stuffed animal on Friday after school if he could complete one math sheet per day without complaint. He did it!

Sammy has really done SO well this week. I give that boy major props for holding his stuff together so well. He hopped onto the bus happily every day and he hopped off happily every afternoon. He eagerly told me details about his day and seemed genuinely excited about going back again. This morning when we were getting ready for breakfast, I could see that Sammy was on the verge of losing it. I think the craziness of the week had finally gotten to him. He sat on the floor of our kitchen, staring at our pantry and literally SOBBING because I told him he could not eat fruit snacks for breakfast. He would not budge from that spot and continued to cry. Finally I grabbed him and hugged him tight and rubbed his back and told him that I understood. School is tiring! It's been a week filled with change! And I told him I was very proud of him. After a few minutes he completely switched gears, got dressed, ate breakfast and was ready to hop on the bus again! By the way, Sammy got an Inside Out stuffed animal, too. :)

There was another major success with Elijah this week at school. There is a kid in his class who was a major antagonist in his first grade class. This kid...ugh. He preys on Elijah's weaknesses and vulnerabilities and instigates trouble. He knows that Elijah is prone to doing things like blurting out potty words or screaming when frustrated, so he will approach him and say, "Elijah, say a potty word as loud as you can!" In first grade, Elijah always did what he said and of course ended up getting into trouble. This year, after seeing this boy's name on a locker at open house, I began coaching Elijah and  doing some role playing. On day #2, Elijah got off the bus and proudly told me that this boy had urged him to "scream as loud as you can!" E told him, "NO!" and turned the other way. This is hugely hugely awesome.

We have had some medical developments this week, as well. Elijah had two routine specialist appointments, one with urology and the other with ENT. We have known that the urology surgery from last November hasn't worked, but we did not expect to alarm the doctor quite so much. Another surgery is necessary and SOON! He wanted to do surgery as early as Monday! I choked and began coughing and asked if we could maybe wait till the following week. So Elijah will have a urethral dilation on September 25th. The surgery itself is not major or worrisome, but what we have to do at home with him every day afterward for SIX MONTHS is worrisome. Let's just say major painful things in that region. :(

Today Elijah got a hearing test and we chatted with Dr. L. His hearing is the same as it was 6 months ago...mild hearing loss in left ear with a spike into normal hearing in higher decibels. YAY! And an improvement even from last time...his ear drum now moves when air is blown into the ear (before it wouldn't budge). Dr. L said AGAIN that he never ever ever ever would have anticipated this outcome for Elijah. In standard fashion, he referred to E as an "evil genius" and walked away scratching his head. In a good way!

I'm super excited about tomorrow because we will be getting together with two new friends (one in the am and one in the pm) who we have recently met. We are excited about the opportunity for new friendships and connections!

Phew, here's to another FULL week almost done. Looking forward to what next week has in store!

Hello to third grade and kindergarten!

I figured out today that this is Elijah's seventh year of school. That is crazy! I remember putting him on a bus on his third birthday and feeling like my limbs had all just been chopped off as it drove away from me. He was sooo little, could barely say his name and was totally dependent on other people. Now he seems like such a big boy and so seasoned when it comes to school. The boy I worried most about today was my little Sammy. Time moved soooo slowly today. I could hardly stand being apart from him and wanted him here with me so badly.

But I just knew he was enjoying his day. I could feel it in my heart and was so happy about that thought. His teacher sent me an email toward the end of the day saying what a great day he had. Yay!

According to Elijah, he felt he had a great day, as well!

Super LOVE this pic...

I NEVER thought it would be so difficult to put my sweet little kindergartener and his bro onto a BIG bus and trust other people to take care of them outside of the school building. Before we left home today, I talked to the boys about the kissing hand and laid a big smooch into the palms of their hands. I told them that if they ever felt sad or lonely throughout the day, to place their smooched-on hands to their cheeks. Then..while at the bus stop, Sammy reached for my hand and kissed it. "Mommy? This is MY kissing hand smooch. If YOU feel lonely today, put your hand to your cheek." Such a sweet, thoughtful boy.

Elijah has a few medical appointments this week, but otherwise not much else is going on. Thanks for peeking in on our cuties! xo

State Fair 2015 and preparing for a new school year!

Another full week has passed! It was fun having my mom here for a few days. The boys were ALL over her and I think they made her head spin a bit. :) We said goodbye on Wednesday as she hopped on a plane to go back to Palm Springs. Dan got back from a long work trip and we made it to open house to visit both boys' new classrooms. Sammy is finally excited for school. He was so cutely excited to have a locker that has his name on it and to check out his new classroom. I think he is going to have a super fun year. Elijah's teacher seems AWESOME and we feel like she will be a great fit for him. Dan and I sat down with her this week for a few minutes and gave her the insight that we thought would be helpful before jumping into the year.

Meds update: We have been going up and down and up and down with dosage because neither 10mg or 20mg has seemed right for E. This week I decided just to deconstruct the capsules and give him what would be around 15mg every morning. We had some SUPER rough days this week, but I feel in my gut like we need to stick with this dose for at least a week before making changes. Just about every 2 seconds I whisper a prayer to myself that we will find the magic dose before school begins. Please, God.

We squeezed in a trip to the Minnesota State Fair this week and we hit all of our favorite food stands and rides. As always, the day went super fast. We love our yearly family State Fair day!

Sammy posing like the "Statue of Liverty" with a cold glass of milk. :)

He was so excited to pet a cow ("Cowwy's family!").

Traditional oink booth crown photo.

Love these two oink booth cuties.

You'd never know that 2 seconds before this photo was taken Elijah was head-butting his brother. Ugh. That switch can go on and off in the blink of an eye.

Posing with their loot!

Wishing you all a fun and safe Labor Day weekend! Thanks for peeking in!

Whiplash

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

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

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

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

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