Corn Maze 2017 and more!

Well HEY! It's been a while. I have been so consumed by work (in a good way!) that I rarely think to post here anymore. We've been in easy mode for quite a while as far as Elijah's medical stuff goes, which has been great! He had a cardiac MRI done about ten days ago (standard procedure for a 10-year-old kid with a complex heart like his) and we get those results on Wednesday. I really have no idea what to expect. If we're told he needs surgery soon I wouldn't be super surprised. And if we're told we get another six months "off" I wouldn't be surprised, either. He's been a bit more tired than usual and as far as we know, he's sleeping fine (for him). There have been times in the past few weeks when he has fallen asleep in class, which is a red flag. We'll see what Wednesday's cardiology appointment brings. I haven't been stressing about it at all and I'm completely just trusting in the perfect timing of everything!

We have officially been in our new house for ONE YEAR! It's surreal, awesome, crazy and strange all at once. Dan put together an amazing play set in the backyard and the boys thoroughly loved having that to play on and a pool to swim in this summer. It is the perfect home for us and we are beyond grateful for every square inch of it! This past weekend one of the trees in our front yard lost every single leaf in a matter of minutes (slight exaggeration), so what did we do? Rake? NO! We made piles and played and jumped and played some more and threw leaves around until it looked like a tornado had come through. 

The boys' new school seems to be a mostly good fit so far. Both boys love their teachers and are doing well keeping up with their work. Elijah has been at the receiving end of some name-calling, which we have stayed on top of. We have conferences for both boys tomorrow, so I'm hoping for a better picture then.

We enjoyed the Corn Maze this year on the muddiest, rainiest, wettest day of fall. Thankfully the corn pit was covered and we all still had a super fun time.

Sammy did NOT like the birds that kept landing on his head. "GET IT OFF, MOM!!!!!!!!"

Of course this was the year that Sammy wanted to walk through the entire maze...through mud and all, with map in hand.

The boys have this entire week off school for MEA/fall break, so we're getting out of the house a bit and trying to enjoy fall and each other. There was a snafu at the health club we had a membership at, so we have an unexpected one remaining month of membership after thinking we'd been done in January. While this is super annoying for Dan and me, the boys are elated! The child area at the club is one of their favorite places, so we plan to make the most of that this week.

Dan has started defensive training with the boys and this is Elijah's don't-mess-with-me face. :) Love it!

Thanks for peeking back in, if anyone is still here! Let me know if you want more updates or if this is overkill at this point in our journey? At any rate, have a wonderful week!

First day of second and fifth grade!

I've been anticipating this day for a while. A new school is a big deal for our boys! Both boys seem to have been matched with really great teachers and I even got a friendly call from Elijah's new sp-ed case manager today. A meeting has already been scheduled to go over his care plan, which makes me feel relieved. Elijah and Sammy both reported having great first days! They both had a lot to say about differences they noted throughout the day. Their old school calls music-art-gym "specials" and their new school calls them "specialists." Their old school had lunch before recess and their new school has recess before lunch. It was fun listening to all of their observations.

We are within walking distance of school, so I walked them there and back home today. It's nice having that time walking with them! And no more 2 hours of driving DAILY to get them to school and back. This is a huge bonus for me! On our way out of school today we walked by lots of kids and I noticed that Elijah was getting quite a few "looks." He wears headphones when is anywhere in the vicinity of buses because the noise of the breaks drives him crazy. We don't think twice about his headphones and the kids at the old school were used to seeing him in them, but these kids didn't quite know what to think. Soon they'll both be loved, just like they were in Shakopee!

I barely knew what to do with myself today! I worked for five consecutive hours for the first time in months and I even squeezed in a non-frenzied trip to the grocery store. Success! Even though we all started going a bit mad toward the end of summer, I missed my two monkeys terribly today and was so super happy to see their smiling faces walk out of the building.

Here's to a great week, month and year filled with happiness, good behavior, good attitudes, good health and good friends!

State Fair 2017 and the entire rest of the SUMMER!

HELLO! Oh my gosh, it's been sooooo long since I've signed on. My deepest apologies (if anyone is still here!), but we've been busy enjoying summer. It has been one amazing summer filled with tons of fun things. Tomorrow we leave for our 7th vacation since May. We feel super blessed and we are grateful beyond words that we're able to squeeze so much in. 

This summer we: traveled to DC, visited my dad/stepmom in Charlotte, swam a lot in our pool and played a lot in our yard, went on a 2.5-week RV trip to S. Dakota/Montana, met my dad and stepmom at Wisconsin Dells for a fun little waterpark vacation, sent each boy up to northern MN to spend SOLO time with my parents, RVed down to Iowa for our yearly family reunion and thoroughly enjoyed another year at the MN state fair. The boys completed two rounds of swim lessons at an amazing local swim school and progressed hugely for the first time ever. We've been enjoying our house every chance we get and using our RV whenever we can. Elijah has enjoyed time with his horse Trixie every Friday this summer through the amazing autism/hard-of-hearing program at Haven Acres.

Our summer in a nutshell! Today we ventured to the state fair for our annual adventure. We experienced probably the most crowded day we've ever seen (yuck), but the boys didn't seem to notice. State Fair Day is Sammy's third favorite day of the entire year (so he informed us this morning), which explains the genuine smiles you see in the following photos. When I put him to bed tonight, he was sad. So so sad because his third-favorite day of the year is over. He is SO much like his mama.

Every year I have the boys don Oink Booth crowns and pose for a photo. These pics were taken five years apart. Sooo sweet!

Pronto pups!

I cannot believe we squeezed the boys into a stroller again this year, but there really is no other way. Elijah (understandably) walks at a snail's pace and I have no idea what we'll do in the years to come.

Sammy was so happy to meet Cowwy's "family." He loves his cows!

We take this photo every year, too. I love these sweet, smiley boys so much!

One of the things I love so much about Elijah is his sense of adventure. He is always willing to try new things, despite having a medical diagnosis of "severe anxiety." He hopped onto this fast kiddie ride by himself and even threw his arms up in the air!

Squished, but smiling!

This is my favorite photo from the entire day. Sammy does not like anything that is remotely fast, so he hugged Elijah tightly from behind for a splash of comfort.

On the menu for the next few days: time up north with my sisters (back in the RV, woo!), both boys starting a NEW school (yikes!) and time for me to get work done! This next week will bring enormous change for all of us, so please pray for smooth sailing. Thanks for peeking in! IF there's anyone peeking in. Now that fall is just around the corner, I'll be here more often. Promise.

The End of an Era!

Today marks the end of an era! The boys walked out of their amazing school for the last time. Elijah has attended this school for five years and Sammy for two. The teachers and staff at this school have POURED love, energy, time, encouragement and teaching into our boys. The Porta boys are well-known at school and leaving all of those wonderful people has made for an emotional day. Sammy and I are having the hardest time of all, no surprise there. Tonight at bedtime Sammy cried sweet little tears. He's going to miss his classmates, especially since they have all been together for two consecutive years. It's a good lesson to learn, but it kills me to see him so sad. Elijah on the other hand is much more excited about new adventures and seems much less sad.

Mother's Day was amazing this year! My boys spoiled me rotten. Dan's and my 11th anniversary was the day before, so we got out for dinner to celebrate. It's been a month filled with tons of good, fun things, including field trips and track and field days and time in our backyard.

Earlier this week Elijah had a check-up with ENT. The hearing in his left ear is declining in higher decibels. My heart sank when I saw the change from the last test six months ago, but Dr. L assured me that there's nothing to worry about yet. He peeked in his ear and saw that the prosthesis is rubbing up against the eardrum a bit, probably causing the decline in hearing. We'll have him checked again in six months and go from there! My mind has wandered to sad places this week, but I keep reminding myself that Elijah's amazing story isn't going to change the more I worry. His story is his story and it will play out JUST as the script is written.

About a week ago we ended a week-long streak of verrrrrry challenging behavior with E. I saw things that I hadn't seen in years. He has been affected by seasonal allergies off and on again this spring and at its worst, it has severely affected sleep. And we all know what happens when his sleep is affected. Thankfully things seem to be getting better and behavior has normalized. Aside from his CONSTANT fighting with his brother, that is.

We have a TON of exciting summer plans to look forward to! Dan is guiding a DC tour this weekend and on Monday the boys and I will fly out to meet him. We will explore DC as a family for a few days and then we (minus Dan) will head to North Carolina to visit my dad and stepmom for a few days. So many more fun things are in store and we can't wait for the summer to unfold and for the end-of-era sadness to fade.

Thanks for checking in! Have a great holiday weekend!

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!

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.

Halloween 2015 and an update

I was hoping that we got sickness out of the way for a bit, but it has invaded our home again. Yesterday Sammy had a fever and sore throat so we kept him home from school today. As the day went on I noticed he was swallowing more and more gingerly, so I took him to the doctor right before the clinic closed. Thank goodness I did because he has strep! We got Elijah tested, too, and he's in the clear for now. Sammy and I will have another day tomorrow of chillin' at home. Not that I ever wish for my boy to be sick, but I LOVED our time together today. 

I'm so glad the sickness struck after Halloween! The boys had such a blast dressing up and going trick-or-treating. I don't know if I have ever seen Sammy so excited and happy. He was bouncing off the walls, even before the sugar entered his body. :) Sammy decided to do his own thing with his pumpkin this year and I love it. He even carved most of it by himself!

Sammy and Elijah dressed up as Fear and Anger from Inside Out. They love that movie SO MUCH and have been so excited to personify these cute little guys. My talented mom knitted Sammy's sweater vest. Isn't it perfect?! I think they both looked so darn cute.

We went trick-or-treating at a nearby mall and the boys got TONS of candy and had fun hanging out with a couple of their awesome cousins. In standard fashion, our organized Sam came home and immediately began counting his loot in perfectly straight rows. 54 pieces (or something like that)!

Elijah isn't quite as organized with his candy, but he of course still enjoyed it!

Our boys are so different in just about every way. Dan and I always know not to touch a single piece of Sammy's candy stash because he will know immediately that something is amiss. Elijah gets excited about acquiring candy and enjoys eating it, but not to the degree that Sammy does and without so much forethought and organization. IF...we "steal" candy at all, it is from Elijah's stash because usually by the next day it is off his radar. :)

Aside from Sammy's sickness, we have had a great past few days. We are still adjusting to things in this new life of ours with Dan working "normal" hours and with Elijah being able to handle so much more than ever before. For literally the first time since before I got pregnant with Elijah, we feel like we have room to breathe. We are able to go above and beyond with some things, which is actually probably just "normal" for most people. We have scraped by for so long and it feels good being in the place we're at. I have been printing and hanging pictures on walls, keeping up with laundry, reading books, keeping up with Elijah's homework and so much more. Life is good!

Speaking of Elijah and homework, he is doing so much better with it this year. I sit down with him every weekday after school that he doesn't have therapy. His teacher told me to JUST have him do 2 problems per section so we don't overwhelm him and that is going well. I usually hear a few BOOORRRINNNNGs, but not much more than that. Last year and the year before, something that took 45 minutes and with MUCH more complaining now takes 10 minutes. Tonight he sat down with me and wrote five sentences by himself without a single complaint. Last year he never ever ever would have done that. He is so smart. Math clicks quickly in his brain and we all know that reading has always come so naturally for him. He told me the other day that science is a new interest!

I need to write more updates because I could go on and on. Working in Cannon Falls for this season doesn't allow me quite as much time to do that, but I need to write down more about daily life with these awesome boys. They are still so little and funny and sweet. They still enjoy being with me and holding my hand and snuggling with me and I love it. I soak it up every single day and enjoy every single moment.

Thanks for checking in and reading to the end. :) Have a great night!

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!

Nurses are the ticket!

We have been waiting waiting waiting for doctors and educators to connect, all the while watching Elijah's exhaustion and resulting behaviors spiral out of control. His tics are back with a vengeance, along with major blurting out, defiance and lack of emotional control. Things are unraveling again. We sent him back to school for the past few days and he did better overall while he was there (thanks to his amazing teachers, who are seriously AWESOME and doing so much to help him), but once he gets home he has NOTHING left.

The doctor we have been waiting on is the one who gave Elijah his NLD (and ASD) diagnosis. This doctor is REALLY smart and really knowledgable specifically in the area of NLD, but I don't necessarily get a super warm/compassionate/empathetic vibe from him. As the week went on I was becoming impatient with his lack of response (and I've bugged him PLENTY), so I knew I had to seek out other options. As I've said many times in the past few weeks, we just cannot go on like this.

On my drive to work this morning, I had a major A-HA moment! I was thinking about how his awesome, caring, wonderful teacher is a woman...and a mother...so why does it seem like she is having a hard time understanding the gravity of this situation? Then I thought of E's neuropsych (the doc we've been waiting on) and how smart he is and how much he knows about Elijah's specific disability...so why does it seem like he is having a hard time understanding the gravity of the situation? OH! Teacher is a mother but NOT a medical professional. Doctor is a medical professional but NOT a mother. THAT'S IT! So then I had the idea that I need to connect with NURSES (who are possibly also mothers). More specifically, nurses who work with Elijah's doctors!

I called E's developmental ped (another Dr. M) and spoke with his nurse and gave her our story. She promised to talk to Dr. M ASAP and get back to me. Then I desperately called Dr. G's (E's cardiologist) nurse, even though we believe his exhaustion is not directly related to his heart. After one minute of talking, she GOT IT. "Oh Megan, this is terrible, and I can totally understand your frustration with school and doctors, too!" She promised to talk to Dr. G and "prep" him, as E has an appointment with him on Monday. I don't know that it's entirely appropriate for Dr. G to write a doctor's note shortening E's school days, but I want to know that he could be a back-up if necessary.

Less than an hour later I received a call back from Dr. M#2's nurse. She relayed what Dr. M had said...we need to eventually address some anxiety issues, but obviously Elijah needs to be able to get through a school day without his brain shutting down. THANK YOU! I answered a few questions that Dr. M had for me, and the nurse ended with: "I'll be in touch soon! If Dr. M writes a letter to shorten E's school days, can I send that to your home address?" YES, PLEASE! I took that as a very positive sign and literally, physically shook for the next hour out of nervous excitement. Could we actually get a doctor's note? That would be incredible and it would carry so much weight. We stand by our thoughts that Elijah's days NEED to be shortened or he will no longer be able to go to that school.

Elijah will be in school for one day next week (one day cardio appt and three days MEA), so we will be able to get him at least mostly back to baseline. Hopefully by the following week we will have a doctor's note in our hands! To be continued!

Goodness, this blog has been WAY too serious lately. We need to throw in some fun! I have pics and so many Sammy funnies to share. As always, thank you for taking the time to check in here!

Croup: Season 7, Episode 1 (Elijah)

At 10:30 last night, Elijah began screaming. Then we heard the stridor. There had been NO signs of croup yesterday (usually I have a pretty good idea that it might happen), so both Dan and I were shocked to hear it. Elijah was more scared than usual, maybe because it had been so long since his last episode. It broke my heart to see him so afraid. We attempted a steamy bathroom, but I knew the croup was severe so I got meds ready downstairs knowing that would need to happen.

As we have always done in the past, we turned on a cartoon as an attempt at distraction while the neb ran. I could hear that the medication was working (thank goodness), but before it began to take effect he repeated, "PLEASE HELP ME!" between gasps. It was heartbreaking! This has not left my mind today. I thought of it a thousand times and my heart lurched every time. After the neb we gave him a dose of oral steroids and in standard fashion I wanted him next to me in bed. The ONLY time we let our boys into our bed at night is when they are sick, so it was a rare and special event! I could tell that Elijah was still rattled by what had just happened because he would NOT let go of me. Both arms were wrapped tightly around me and this is not something he does very often. I wrapped myself around him right back and said a prayer out loud: "Dear Jesus, please let Elijah know that he is SAFE, PROTECTED and LOVED." A few seconds later... "Mommy? You are loved, too, you know." It came from a very genuine place, which doesn't happen all the time with him. I am so grateful to be both his and Sammy's protector and to be one of the two people responsible for making them feel safe and loved! I love my boys so much!

His stridor came back a bit as the night went on (this is typical), but it never got bad enough to warrant too much worry. He had a runny nose today and sneezed a bit, but we didn't hear any more stridor. I gave him a preventative half dose of steroids before bed tonight. Dan is gone working all night tonight, so I'm PRAYING it'll be a quiet one!

We kept Elijah home from school again today, which was the third consecutive school day. We discovered that more than three days in a row warrants a doctor's note, so we'll reluctantly send him back tomorrow. Although it seems like five days away should be PLENTY of time to recuperate.....it's not. Not for him. He reaches boiling point much more quickly than the rest of us and it takes him MUCH more time to get below boiling point. I've been doing everything possible to get his days at school shortened. I talked to the sp-ed supervisor for our school district today and explained our intentions behind keeping him home and reiterated that he just absolutely needs shortened school days. She seemed willing to explore options for him, but....shortening his days are a last resort, as I suspected. As unique as Elijah's situation is, they are still going to do everything possible to keep him in school full-time. I haven't fully processed this yet, and I'm not sure what is going to happen. I know that we cannot expect him to carry on as is. If the doctor/school won't allow us to shorten his days, we are going to have to find another answer. A few options in my head at the moment: short-term homeschooling (while we find a school more suitable) or simply showing up at school at 1:00 every day to take him out. Apparently E's neuropsych and teachers have been unable to connect, but I'm PRAYING (soooo very hard) that the doctor will be behind our thoughts 100%. If he is, this should definitely carry some weight. 

The people from Elijah's school keep assuring us that they "realllllly want him in school," which is great! But....do they want what is best for him....and what is best for our family?

Please pray for a peaceful night for us! I'm a tiny bit on edge having Dan gone and being on semi-croup alert. Thanks for checking in! I have really fun photos to share from a family outing we took this past weekend. Maybe tomorrow I'll get them posted!

Doing what is best.

My frustration regarding our situation with Elijah and his being waaaaaay overwhelmed as a result of full days at school has turned into a bit of anger. Not with anyone, but with the situation. I am beginning to feel MAD that it is SO DIFFICULT to help our struggling child get what we know he needs.

Despite his teachers truly trying to help, we feel grossly misunderstood and underestimated. Elijah hit two different classmates today, and to be honest I wasn't surprised when I got the call. I knew something like this was coming and I told his teacher two weeks ago that if we didn't address the root issue things were only going to escalate. Because Elijah showed his teachers that he knew what he had done today was wrong, they believe that his actions are "behavior-related." We don't disagree! We agree that he is manipulating his teachers and displaying purposeful negative behaviors, but he wouldn't be doing any of these things if he wasn't well beyond his boiling point!

This is so hard and sad. :( Especially after last year, we REALLY want to have a trusting, good relationship with Elijah's teachers. At this point we do not feel supported in our decision to keep Elijah out of school, but ultimately....Elijah is our priority! Elijah's situation/history is complicated, but we know our boy VERY well. I've been saying this for weeks, but I'll say it again. If we want him to succeed/thrive/feel good/treat people kindly, he needs to return to baseline and then his days at school need to be shortened. So we have made the decision to pull him out of school indefinitely (however long it takes to get him back below his boiling point). In the meantime, we will do what we can to get him approved for shortened school days.

That's all I've got for now.

Going to bat

This post comes to you from one tired mama. I could fuel a skydiving plane, at least for a few loads, with the energy I have put into THINKING...and not sleeping...this week. It's been totally worth it, though! We are making progress!

Although Elijah's case manager and teacher are doing so much for him at school (they really have put TONS of effort, thought and love into our boy already this year!), I still don't feel like they truly understand the weight of the situation. I don't mean to sound ungrateful or negative at all because I am sincerely so happy about the team that is caring for him. It'll take some time. Eventually they will understand that while all the tactics and tricks are great and may be helpful short-term, we need to get to the root of the problem: Elijah's brain cannot handle full days at school. Or...it CAN (with the help of the tactics and tricks) but then he has NO reserves. He uses every bit of his energy to survive the school day. We are unable to ever do anything past 6:00 in the evening because if he's not in bed by 6:30, his sleep suffers and things escalate. Weekends have to remain super low-key. Not to mention the impact this is having on our family! Dan and I are stressed and tired. Elijah is having a difficult time controlling his emotions, which sets a bad example for Sammy (who is now mimicking his brother's outbursts).

I have been honest with his teachers. I have told them what he needs and what is going to transpire (ugly behavior turns super ugly turns super-duper ugly) if we continue to patch the symptoms. They have asked for more time to try other things, but ultimately Dan and I know that the kid just needs less on his plate.

I called Dr. M today, Elijah's neuropsychologist. I wanted to run the situation by him. He heard me and he agreed. The things that are being done at school are GREAT! But these "solutions" are band-aids. We need to get to the root of the issue if we truly want what is best for Elijah. I mentioned the partial-day idea and he suggested first trying a few hours of in-school downtime at the end of every day. I'm learning that educators and medical professionals want to do EVERYTHING POSSIBLE to keep children in the school building! I totally get that for the majority of children, but for a kid who has soooo many strikes against him and has endured sooooo many struggles and is sooooo depleted/exhausted/miserable, etc etc etc?!

Dr. M offered to chat on the phone with Elijah's case manager. He is going to suggest the in-school free time and if that's not an option he'll stand behind us on doing partial days. I am so happy about this! Dan and I are hoping Elijah's team at school will see the need for this and understand our genuine intentions and still trust us. The bottom line is that Elijah has endured so much in his life and we refuse to see him suffer any more when we know there is a viable solution! If there is a way to make things easier for him, we are going to fight for it. We KNOW what he needs right now (or at least what a good first step is) and we pray that his educators will trust us.

And for those of you who have left sweet comments and sent emails about home-schooling...thank you so much for your thoughts! I don't foresee things getting out of control, but if they do we may explore another avenue short-term. We want Elijah in school for a couple of reasons. He needs to be "pushed" socially...and daily (not too much, obviously). Also, I believe that school (as much as his brain can handle) is strengthening his endurance and will help him out so much in the long run. I don't feel like home-schooling would push him enough, but full days at school push him too far at this point in his life. We need to find a middle ground and we are HOPING that can happen in a school setting and we will do everything we can to make that work.

Thanks for reading and for all of your support and suggestions. We cherish every note, thought and prayer! THANK YOU THANK YOU!

Too much.

We are still processing the awesome, amazing, miraculous news we received this week. I still just can't believe it! In the midst of that we have been dealing with some struggles. Some of the same things we saw in Elijah during last year's rough stretches are slowly popping back up. Beginning on Monday of this week I noticed the checked-out exhausted look return to his face. I've noticed the up-and-down eye fluttering a few times this week and I haven't seen that since his really rough stretch last winter. He has been waking up between 3:00 and 4:00am for the day again. That hasn't happened since last school year either. He has been much more defiant and rigid this week, as well.

Tuesday and Wednesday were rough days at school for him. He was screaming at his teacher and not being kind to classmates. I had a chat with his teacher who presented all of this to me in such a kind, positive and concerned manner. That night I laid in bed for hours pondering everything. It was worth the missed sleep because I feel like I figured out a MAJOR thing!

Full days at school are simply too much for Elijah to handle right now. We all know how rough last fall was for him. During the stretch of time after his ear surgery when he was going to school for 1/2 and 3/4 days he had NO issues at school. Then in May when he was back full-time again, he started struggling again. The day after school was done we left for our big road trip and that was rough. I piled a two-week-long vacation (way too much) on top of a month of full-time school (too much).

He did really great overall this summer once we were home and settled back in. The first two weeks of school were good. And now, on week three, things are slowly beginning to unravel. This is about when it started to happen last year.

I want to cut back Elijah's school days at least a few days a week. I KNOW this is what we need to do right now. We have tried everything under the sun to help him. We've focused on sleep, anxiety, diet, specific behaviors, etc. History shows that the only thing that has helped is not giving him TOO MUCH. What a great silver lining from a really difficult surgery and recovery! I never would have figured this out without that period of time when he was going to school for shortened days.

Elijah's awesome team at school has arranged a meeting to discuss these recent thoughts. We'll do that on Tuesday of next week. I have no idea how this will be received and what will need to happen to get what is best for Elijah. I am praying that there will be a way to shorten his school days and that his team will support us.

I feel so bad for Elijah. I feel terrible for giving him way more than he can handle and expecting him to behave appropriately on top of that. Poor guy.

Thanks for peeking in and we would greatly appreciate prayers that we can get Elijah what he needs to have a fun and successful second grade year!

Week one of second grade done-zo.

Week one of second grade is done! We are feeling really good about the week and the year ahead. On Thursday afternoon I got a call from E's teacher. I saw the school's number pop up on my phone and my heart started racing. I knew the number well from last year. She was awesome and so so very kind. Elijah had reached a point of being overwhelmed and there was a minor incident with a classmate. She did the PERFECT thing. She calmly told him she was going to call me and did so immediately. From that point, he was able to turn things around and he was fine for the rest of the day. I was able to give her a few pointers so she could better understand how to deal with the situation. If this incident had occurred last year an entirely different scenario would have transpired afterward. We are feeling very grateful.

Elijah's new special education case manager, although we haven't officially met him yet, is AWESOME. In the four days Elijah has been in school, Mr. F has initiated a few one-on-one social situations for Elijah that have already been a success! Elijah and a friend from another class have been meeting for monitored play time together. Mr. F said that the boys formed a quick friendship and (when encouraged) found that they had a lot in common. Elijah has been talking about his new friend John and seems excited about the friendship. We SO appreciate this proactive approach! Elijah gets to spend time with Mr. F daily (away from class), which is great!

So far Elijah has told us:
- He really really REALLY wants to play the drums in music (so much that he started banging away on them, against the music teacher's wishes).
- "Mommy? I think my teacher this year might be better than my teacher last year."
- His favorite part of school so far is reading. :)
- Going to the bathroom after lunch (we told his teacher he NEEDS to do this) is annoying.
- His teacher has taught him to do stretches when he needs a break. I LOVE this!

Dan and I were very impressed with how well Elijah has held things together this week. He was a very tired boy tonight, so we put him to bed a little bit extra early. We feel so good about the people who will be caring for him while he is at school this year. Grateful grateful grateful!

I have been relishing my time with Sammy! I can't believe he will be in school full-time next year. :( We've had a few fun excursions this week and we will make the most of our time together this school year. I love my sweet, snuggly Sammy sooo much!

Weather permitting, Dan will be working all weekend. The boys and I may head to the dropzone tomorrow for some down time before another week of school begins. Have a great weekend and thanks for peeking in on our family!

Words.

This beautiful weather feels incredible! Finally! We have been spending a lot of time outdoors and it has felt amazing. I brought Sammy to Kohls tonight to do a little summer clothes shopping and he was SO excited to pick out summer shirts. "MOMMY! It's finally SUMMER! I can wear hot summer clothes!" He has refused to wear anything but shorts and t-shirts (only shorts/short-sleeved jammies, too) for the past week. No socks. Just crocs and plain ol' summer clothes. I love it. We're in summer mode.

I'm going to TRY to make this quick. I got a call back from Dr. M today, E's awesome neuropsychologist. He took 45+ minutes to chat on the phone, which I appreciate immensely. He didn't understand why the school social worker had 1) been so negative about getting Elijah labeled with ASD through the school system and 2) why she had expressed her opinion on the matter to me at all. According to him, it is typically much easier to get an ASD label through school than it is in the medical world. Basically all of the testing on Elijah has been completed, so minimal work on their end would need to be done to get things going. He suggested that I just make sure a date is set to do the ASD testing, whether that be this year (not likely) or right away in the fall. In reality, the label doesn't matter. As long as he has an IEP and his specific needs are spelled out, that should cover him. We need to educate next year's teachers about NLD and provide him with the best classroom experience possible. Stated simply: We need for his caregivers to understand Elijah!

I asked Dr. M for some advice on interacting with Elijah at home. I gave him a few examples of issues that happen repeatedly (multiple times/day) and that have been issues for years....with no real learning occurring. He explained again to me that Elijah can't always make connections. Even if he can repeat a connection back to us, that doesn't mean he truly understands it. So it's not a matter of teaching him a lesson repeatedly in hopes that he will eventually "get" it. Instead, we need to teach him skill development. Example: when he becomes frustrated with Sammy (when Sammy steals a toy or interrupts his play), he gets very frustrated and either hits him or head butts him or screams at him (or all of the above). Dr. M suggested teaching him other ways to deal with frustration and repeating that until it becomes a habit. Tonight I did role-playing with him. I pretended to be Sammy, stealing a toy. I told him that if he felt upset or frustrated that he needs to take a step back, stomp his feet, call for Mommy and get help. THEN....if he did all of that appropriately, he'd be rewarded with computer time or a treat of some sort. We did this a handful of times and he was loving it. Then before bed, Sammy came up and swiped a toy right out of E's hands. Thankfully I was right there and prompted E. "Elijah! This is frustrating! What do you need to do?" He did exactly what we had rehearsed downstairs. He took a step back, stomped his feet and asked me to help. We will need to re-enact these sorts of scenarios repeatedly until he learns them.

I asked Dr. M about Elijah having such incredible visual recall when I asked him about our trailer at the dropzone. He said that made total sense, as long as the trailer is a positive thing for him. As long as E is interested in something and truly enjoys it, he is going to be able to have good visual recall. He told me that if I asked him to recall the trailer in a different way, such as, "If you are standing by the bunk beds, what is behind you?" he would have a much more difficult time. It is so interesting and challenging learning to think the way he does. This is going to be such a process, but we're up for it! Anything for our boys!

Over the past few weeks we have stressed even more than usual the importance of WRITING things out. We bought a THIRD white board for our home. If we had a money tree and I could buy anything I wanted, I'd buy an entire white board wall for our home because Elijah loves them so much. He will sit and do endless hours of math problems, spelling tests and even writing poetry on white boards. We bought an extra large one today for this reason and he immediately sat down and wrote a poem, accompanied by a drawing. He read the entire thing to me (twice) and was so proud of his work. This is something that he could not express in any other way at this point.

The next three days are filled with crazy work for me. A day in Cannon Falls and two weddings, whew. Sunday will be a day of rest together and then Dan leaves for a 6-day DC trip. Life is crazy! Thank you so much for taking the time to check in! Wishing you all a great rest of your week.

Ruminations on NLD

Today was a day of major processing. Thankfully I had the day off work, so I was able to do that without interruption. I began reading websites on the topic of Nonverbal Learning Disorder/Disability while on the treadmill at the gym. WOW. There is so much information to absorb! First and foremost, I am extremely grateful to have this new knowledge but it definitely is overwhelming in these initial stages. I stepped into a cozy, hot shower in the locker room and sobbed like a baby. I didn't even care who was listening. The tears were ready. They expressed relief and grief, happiness and sadness.

Here is what I have processed today..

By being hyper-aware of Elijah's delays and needs early on (before he was 5 months old) and getting him as much help as possible through weekly therapies (PT/OT/speech), medical intervention and the school system, we have inadvertently tackled some challenges way ahead of time with his NLD (nonverbal learning disorder). As I read through website after website on this disorder, every single one describes Elijah as if they know him personally. There are a few characteristics that most NLD kids display at his age, however, that we have managed to avoid by teaching him certain ways of talking/acting/behaving. For example, most NLD kids speak in fairly monotone voices, without much inflection and without using a large range of facial expressions. One of the things we have done with Elijah since he was a baby is to over-exaggerate our inflections and expressions. He learned those behaviors (as well as the associated meanings), and currently speaks with much inflection and he uses many different expressions. Since he was a baby, I have always played the "facial expressions" game with him. "Show me a MAD FACE! Now show me a SURPRISED FACE!" Also, we used sign language with him early on, which helped him to have some reliance on visuals which is really important for him. Now that we are enlightened, we will do these sorts of things with much more regularity. We will explain everything in an attempt to teach him how to generalize and learn cause-effect and understand sarcasm and not take everything literally. This will be an entirely new lifestyle for us, and we are ready to tackle it. It excites me to think up new ways to help him out!

Just in the past two days, Dan and I have immensely renewed patience. And a little bit of guilt. We have punished Elijah for YEARS for things he has had no control over. Ugh. This is a tough one to swallow. Thankfully, he is 7 and his doctor reassured us that we have not caused any damage. We know his "language" now, and we are starting fresh from this point. Dan and I have been implementing new ways of delivering information to Elijah and it has been super helpful. Instead of my usual way-too-wordy lecture, I said to him tonight as he was riding his bike in the driveway, "Elijah! STEP 1! Go inside and do your homework. STEP 2! Computer time." He IMMEDIATELY obeyed, with no whining or complaining. We have also been using the iPad app I mentioned yesterday for bedtime and morning routines. Is it a coincidence that he used the bathroom TWICE tonight completely on his own?! (This NEVER happens. Seriously. Nevvvver.)

I have not received an initial super-supportive response to all of this new info from all parties at Elijah's school, which is disheartening. His school is not familiar with NLD, which is totally understandable, but I wish we would have received the "we will do what we can to make sure Elijah gets the support he needs" response that I was hoping for. From what I understand, even though Elijah was given a diagnosis of ASD by a medical professional, that may not apply in the school system. Also, I was told that NLD is a "diagnosis that is not recognized," which seems totally ludicrous. More to come on all of this, as I'm sure this story will quickly unfold. E's school social worker wants to hold another IEP meeting with the whole team before the end of the year to address all of this new information. I am very much in support of this and grateful she suggested it.

I also gave a copy of Dr. M's report to E's PT/OT tonight. His PT has worked with him since he was a tiny babe, so I appreciate her level of interest, concern, knowledge and compassion as well as her commitment to read through 18 pages of results without complaint. She assured me she would read through the entire report and give me her thoughts next week. Dan and I are finding that we so greatly appreciate professionals who genuinely appreciate our situation and we lean on these people. We have sent up major prayers for his 2nd grade school year and that we become connected with people who listen and genuinely care. This will make or break second grade!

One last thing and then I'll stop, I promise! One of the things I read on an NLD site today is how mothers of NLD kids are often perceived as being super overly protective. Uhhhh, YES! ME! I've been labeled as "overly protective" by family members and friends over the years, and I've always felt defensive. I have always fully understood Elijah's capabilities and limitations and I find myself often thinking or saying (or both), "But he can't DO that!" Not because I have ever wanted to limit him! Goodness, I am an adventurer myself and I wish for the same qualities in my children. I just happen to know that Elijah CANNOT DO CERTAIN THINGS. As his mother, I know what he is and is not capable of and I'm not afraid to protect him. Now I know why and that helps. It also helps to know that I haven't been unwarranted in my over-protectedness. Here is a quote from the following website: http://www.ldonline.org/article/6114/
"The myth of the 'overprotective mother' needs to be dismissed; parents and professionals must both assume a 'protective' and helpful role with the child with NLD. Dr. Rourke states, 'Although sensitive caregivers are often accused of 'overprotection', it is clear that they may be the only ones who have an appreciation for the child's vulnerability and lack of appropriate skill development.' Care and discretion need to be taken to shield the child from teasing, persecution, and other sources of anxiety. Independence should be introduced gradually, in controlled, non-threatening situations. The more completely those around her understand this child and her particular strengths and weaknesses, the better prepared they will be to promote attitudes of personal independence. Never leave this child to her own devices in new activities or situations which lack sufficient structure."

That's all for today. Whew, that was a lot! Sorry if I bored you. Thanks for checking in and have a WONDERFUL rest of your week! We love all of you..xo

Huge puzzle pieces clicking into place!

For the better part of the past year, we have been waiting for the last of the puzzle pieces to click into place. I have felt so strongly in my heart that big stones were left unturned and that there was so much more to discover about Elijah. Things have become so complicated with him in the past few months and years. Sleep and attention and toileting and behavior and repetitious behaviors and social difficulties and outbursts and frustration and anxiety and tantrums have all compiled on top of one another. All of the above are affected by and also affect all of the other above challenges. I've felt like we have been slooooowly clicking puzzle pieces into place, learning more about how our sweet oldest boy operates.

After yesterday's appointment with E's neuropsychologist, I feel like we have gotten as close as possible to completing the Elijah Puzzle. Dan and I sat with Dr. M and listened to an hour and a half's worth of results/findings/thoughts/speculations/recommendations. We walked away feeling enlightened and excited. We have answers!

Dr. M began by talking about the things we already know. Elijah has an extensive medical history. Medical incidents/diagnoses stacked upon hospitalizations stacked upon health issues and intubations and anesthesia and a lack of proper blood flow/oxygen and significantly delayed development...his medical history in itself is a lot to comprehend. When all of the above is present, particularly a lack of blood flow and oxygenation, the brain can be affected. The main guess at this point is that certain pathways in Elijah's brain were damaged due to any or all of the above, which caused his brain to create new pathways or ways of being wired. We'll call them Elijah-ways. In certain ways, Elijah's brain does not process information like most brains do. Certain tasks that come easily for his classmates/peers are VERY challenging for him.

First of all, Dr. M totally and completely ruled out ADD, ADHD and OCD. Interesting! But it will all make sense in a minute.

Elijah received three new diagnoses, all of which we believe will help him immensely in the school system and at home and in the world, as well. We have known since he was a baby that Elijah has displayed "tendencies" toward autism but given his desire to engage others and to be social with others, his doctors and educators have always shied away from this label. Dr. M thought that based on the description of his struggles in the social/cognitive realm and based on the information I provided at our initial consultation, Elijah is indeed on "the spectrum." He sees it more as a way to focus on appropriate intervention for him than anything else. He can receive a more appropriate label at school and get help in many other areas than just deaf and hard of hearing. Dr. M explained to us that he has classified Elijah in the highest functioning category of ASD. Most likely, he was not genetically predisposed to have ASD, but came by it through other means (extensive medical).

His second diagnosis is called Motor Dysgraphia and this indicates that Elijah has significantly impaired perceptual-motor difficulties and visual-motor integration due to motor delays. If somebody asks him to write five perfectly-formed sentences in five minutes, he physically would not be able to complete the task. He has always had significantly delayed motor skills. He has come SO FAR, but this still really limits his abilities which is why the doctor wanted to give it a label. It is significant enough that it needs to be noted in medical terms.

The third diagnosis was the most interesting and for Dan and me, the most important piece of the puzzle thus far in Elijah's life. This is the piece we've been waiting to click into place for YEARS. He has what is called Nonverbal Learning Disability, which means that he is unable to process information that enters his brain in any other way than verbally or through written words. Pictures and visuals mean NOTHING to him. They confuse him and frustrate him. He can look at a picture of a person putting a finger to his mouth and not have any idea that that means he should quiet down. In fact, he becomes frustrated about not understanding what it means and acts out in response.

In order for Elijah to understand a concept, he needs to hear it verbally (or see it written...or both) in very literal terms. He cannot connect dots or generalize or perceive body language/social cues or draw a picture of a generalized concept. He scored "superior" in the areas of auditory attention and verbal fluency during his recent testing, but was "borderline impaired" on much of the visual portions. At times, we have been speaking a language to Elijah that he does not understand.

This changes so much! And this explains the OCD/ADD characteristics we've seen recently. These qualities have most likely been a result of anxieties surrounding being misunderstood/frustrated. This new amazing doctor gave us many suggestions and resources and iPad apps to help us all out. Having the new knowledge that E needs verbal and written step-by-step instructions, we are viewing so many issues in a totally different way, such as using the toilet, getting ready for school and completing homework. This morning we had a new app set up for him that had his morning routine spelled out in words, as well as verbally spoken to him. He was able to cross off each task as he completed it. HE LOVED IT! It was genuinely fun for him. We watched him use the toilet on his own for one of the first times ever.

This new news sheds light on Elijah's social struggles, as well. He does not understand body language or other social cues appropriately, so he struggles when relating to his peers. This causes anxiety, which makes everything else difficult for him. We are hoping that if we can tackle some of Elijah's "learning" challenges in a proactive way, his anxiety will be lessened and his confidence and sleep will improve.

This is a lot of information to absorb and I literally will read the doctor's 18-page report daily until I "get" it all. Dan and I are still in the processing stages, but I wanted to get these initial thoughts out. Thanks for reading this entire post! Phew! :) We would appreciate prayers for proper direction on how to parent/teach our oldest boy. THANK YOU! More to come..

More Sammy funnies and a sleep/school update

Since I'm on a roll with Sammy funnies, I'll share a conversation that took place today in the car on the way to the grocery store. Sammy said to me out of the blue, "Eventually we are going to have to flush Elijah down the toilet, Mom." As far as I know, that was his first time using the word "eventually," which I found to be hilarious in itself, and he follows it with that?! I died laughing! Which inevitably was followed by, "DON'T LAUGH! I'm NOT cute!" Of course not [giggle giggle]!

Quick update on Elijah's sleeping. We've been slowly increasing his dose of "magic sleep medicine" over the past 9ish days and if anything, his behavior has gotten worse by a few degrees. He has still been waking up between 3:00-4:00ish every morning. I feel in my gut like we need to weather the meds for a bit longer. We'll see what the next week brings, along with a slight increase in dosage. I have no idea what our next step will be if this is a total failure.

Three-quarter days at school are going okay. Honestly, I think even this is a bit much for Elijah, but jeez. We need to get him back to school full-time at some point! We never know how exactly to decipher notes from his teacher because she tends to be so black and white, and having very little grace. So we never know if "needed several reminders to stay on task" along with a :/ face is something to be concerned about. If I wrote those words about him, it would be a great day! So we really never know how to appropriately follow through. I'm so done with first grade and so ready for second grade. 

We do try so hard to stay focused on the blessings amidst this challenging school year. We are SO grateful for his excellent academics. I can't imagine throwing difficulties in that area into the mix! Yikes! We are grateful for the people in his life who love him and who make an effort to understand him. The lady at the front desk who exchanges jokes with him daily. His special ed case manager who makes a sincere effort to understand what he needs in order to be successful in the classroom. His sweet bus drivers who greet him and say goodbye to him every day with total happiness and sincerity. There ARE many wonderful people surrounding him!

Since I started with a Sammy funny, I'll end with one, too!

Instead of "Pirates of the Caribbean," Sammy says, "Pirates of the Accordian." :)

Thanks for checking in! Wishing you all a great rest of your week!

Preparing to return to school

Elijah is a few hours into wearing his ambulatory EEG monitor. He looks like a cute pirate, with his bandana and missing teeth. :) We will bring him back to the clinic tomorrow so Dr. J can review the results. We're praying hard for no seizure activity. I don't think we'll actually get the results for a few days.

The past few days have been filled with visits from various people from Elijah's school as they do testing for his upcoming special ed re-eval. The DHH (deaf and hard of hearing) teacher performed a few fun tests where E had to listen to directions about how to color a character on a piece of paper. An audiologist stopped by today and performed different hearing tests that I found interesting. When she put "noise" between her and Elijah and spoke words to him, he could not decipher what she was saying. I think he repeated maybe 2 of the 30 things she said back to her. He also became very fidgety and did a few verbal outbursts during the "noise" portion. It was very obviously bothersome to him.

I chatted on the phone with his school PT today and she plans to help him on and off the bus for a few weeks (so thankful for this). Have I mentioned that he will be going back to school on Monday? Yikes! We'll start with half days for a few weeks and go from there.

The school audiologist will visit his classroom sometime next week to make sure his desk is situated in the best possible place considering his situation. Elijah's special ed case manager, who has been doing his homebound schooling at our home, spoke with me at length tonight about Elijah's transition back to school. She is doing everything she can to make the transition as smooth as possible for him. She plans to talk to his classmates tomorrow about his return to school, which I think is so super thoughtful and helpful. She will tell them why he has been absent and also explain about his hearing difficulties (if they want to get his attention, they should maybe tap a shoulder or make eye contact first).

Yesterday we got a cherished visit from Elijah's kindergarten teacher (and her super adorable blue-eyed baby!), Mrs. B. Oh how we love her! She and Elijah have such a unique connection and it was so much fun to see them interact. It reinforced to me the importance of him having a teacher who gets him and who can be silly with him and who has compassion for his history and also loves him for who he is. I tried to talk her into maybe teaching second grade next year. :) I think she's going to stick with kindergarten, dangit.

Once things settle down, I will write a SAM-ONLY post! Sammy, our sweet boy, is ridiculously cute and adorable. He melts our hearts and we all love him so much. Thanks for reading!

Neuro tomorrow

Elijah has been cleared to return to school starting on Monday for half days. We are thankful that his school's social worker has worked so hard to make this happen and also that she has sorted out all of the details.

Tomorrow morning is E's neuro appointment. Honestly, I'm having a mild panic attack over the thought of it. His tics tonight were intense. We are ready to fit a few big pieces of the puzzle into place. As Dan said today...a few sky pieces and a few grass pieces are going to be firmly placed!

That's all for tonight. Thanks for reading. Wishing you all a happy week!