Tuesday, October 29, 2013

Just another week!

I'll begin with a bit of disheartening news. A tiny bit of consumed chocolate has pushed Elijah's ear surgery back by 2.5 months. It is now scheduled for January 7th. We feel bummed about this, as we were hoping to have it out of the way (and having his hearing restored) by now. But we are TRUSTING in this timing. In HIS timing.

And now for some positive news! After receiving a disheartening email from Elijah's teacher yesterday afternoon about his behavior, I just felt...saddened. He is SO. TIRED. Dan and I both feel that his exhaustion is the main reason for his behavioral issues. I feel like his upcoming appointment at the pediatric sleep clinic will be insightful, but that isn't on the schedule until December. On my way home from work yesterday, I called the sleep clinic and left a sobbing message on their voicemail (yes, I'm that mom). I asked if there was anything they could do for us in the meantime, as we suffer through major difficulties with exhaustion and behavior, etc. I received a call back right away this morning and they had a cancellation! Elijah can now be seen on November 14th! We are so excited about this and it was a major answer to prayer.

His behavior in school has been totally sporadic and inconsistent, which has been difficult to understand. Some days he has ZERO issues. Some days he has 27 "blurt-outs" (yes, his teacher counts). Some days he has great mornings and horrible afternoons. Some days he begins his afternoon horribly and is able to turn it around. Some days he screams at his teachers. Some days he is kind to his teachers and peers. ????? I pray to God that exhaustion is the culprit of all of this and that he will be much more even-keeled once we figure out the sleep issues.

SAMMY, our sweet/sassy Sammy, is so stinkin' cute and smart (when he's not exerting his independence)! Please let me indulge in a my-kid-is-smart story. The other day Sammy asked me if he could watch a show. I said, "I don't know. How many shows have you watched today?" He said, "Let me ask Dad!.......Daddy?! How many shows did I watch today?" Dan said, "One this morning and one after nap." Sam came back to me and said, "Mom, Dad said I watched two shows today." Wait....did my 3-year-old just do math?! He is also beginning to write letters and sound out small words. Just to be sure on the math thing, I tested him this morning. "Sammy, what is 1+1?" "TWO!" "What is 2+1?" "THREE!" "What is 3+1?" "FOUR!" Scary. Our boys are going to be out-smarting us in 2 years. Oh wait, they're already doing that.

And Sammy is now a mostly potty-trained big boy! Not only is he peeing in the toilet all day by himself, but he is keeping his diaper mostly dry during the night. Dan and I are a bit taken aback by this. Shouldn't this process take four years?! Like we've always said, Elijah and Sammy are learning things side by side in so many areas. Now Elijah is asking us, "When can I not wear a diaper through the night? I'm NOT a baby!" :)

Thanks for checking in! We pray that you are all happy and healthy! Have a great week!

Saturday, October 26, 2013

Pumpkin carving 2013

I realize I am a bit biased, but...aren't these boys HANDSOME?! Look at these beautiful faces!

We did our annual pumpkin carving tonight, which involves...

..the boys getting the process started.

And Dan and I doing all of the work while the boys play. :)

We love it! Guts and all.

Dan broke out his drill this year (unsuccessfully). Notice the ear-plugging going on in the background. :)

We decided to have a contest this year. Daddy-Elijah vs. Mommy-Sammy. I think I know who won, don't you?! :)

Thursday, October 24, 2013

Corn maze 2013

Our fun family Sunday excursion was our yearly corn maze adventure. For the first time ever (thank you, bad weather), Dan was able to join us! We got drizzled on a bit, but we all had a blast!

The boys always love running through the maze made of hay bales. Thankfully they are big enough now that I can always see the tops of their heads! I remember a few years ago losing Sammy a few times and panicking.

A new part of the adventure this year was a corn pit! Elijah loved it (Sammy did not). He loved running around in it and getting buried.

And burying Mama, too. We found corn in the strangest places later that day.

We got an extra treat that day by getting to spend time with cousins. The boys were so happy about seeing Kayla and Miya!

We went into the parakeet house last year and Elijah loved it (Sammy did not). This year both boys loved it. The birds were EVERYWHERE, and it was a little bit freaky.

They were nibbling on Sammy's shoes and swooping through my hair and almost getting stepped on by all of us. I was secretly happy to get out of there. Don't tell the boys.

After spending family time at the corn maze, we said good-bye to Paul and Babe and headed back to our warm home.

I won't lie, it's been a strange week. We went from emotionally preparing for a big surgery to (in a matter of 10 seconds) totally re-calibrating to a "normal" week. Dan and I have left three messages with the ENT scheduling department and still do not know a new date for Elijah's ear surgery. This has been disheartening, as we would like to have some sort of idea about when to expect it to happen.

Even though this week was a letdown and super strange in many ways, I do truly believe that it worked out how God planned it. For whatever reason, Tuesday was NOT Elijah's day for ear surgery. I totally and completely believe that with my whole heart. That has given me great peace and comfort all week.

Elijah continues to struggle with keeping himself together while in school. His behavior is challenging for his teachers and now he is having an issue with a classmate. There is an "unkind" boy in his class who has called Elijah hurtful names and picked on him a bit. Apparently Elijah has wanted to "get back" at this kid, so his teacher shared with us that E has been "bugging" him in order to get a reaction. We think he is instigating trouble because he knows he will get a reaction. We have had a lot of talks this week about it, but he continues to prod this little boy.

It's always something...or ten somethings! There are many other behaviors that we are trying to help him with that are disruptive to his classmates and teachers. We will continue to be consistent and.....WE WILL GET THERE! Sometimes it doesn't feel like we will, but we will.

By the way, we have finally received Elijah's light and have been doing light therapy with him for over a week now. So far it is not doing much, but we remain hopeful! I know deep in my mama gut that curing his sleep issues will help so many other issues that he/we are dealing with.

Thanks for checking in! Dan will be working his last weekend of the season at Skydive Twin Cities and I have my bestest friend visiting overnight tomorrow! Woooo! Have a great weekend!

Tuesday, October 22, 2013

For everything, there is a reason.

As Elijah and Sammy headed downstairs this morning, I ran over to the laundry room to grab them clothes for the day. I reminded Elijah, "NO EATING THIS MORNING!" I was literally ten seconds behind them and came downstairs to find Elijah eating the chocolate off of a chocolate-covered almond. My loud NOOOOOO! caused him to swallow the delicious chocolate, four hours after the time he was no longer allowed to eat solid food. I remembered a story a nurse told us once about a little girl who ate a single goldfish cracker a few hours before a heart surgery and they had to reschedule it. 

Elijah's response was, "But I want to have surgery today!" He apologized repeatedly, as it was a total mindless thing and not at all a defiant thing.

I chatted with a nurse, who chatted with Elijah's surgeon, and even such a teeny tiny amount of food in his stomach was not allowed. Postponing the surgery was not an option since the surgery was expected to last four hours and that would have put us into evening. I'm waiting to hear back from scheduling to get another date on the calendar.

Honestly, I just have to believe there was a reason for this. I am telling you, Elijah NEVER snacks. If I physically hand him a snack he will eat it and he will sit down at every meal and fill his belly, but he NEVER seeks out snacky food like his little bro does. We may never know the reason for it, but today was not his day for ear surgery. Another time..

Sunday, October 20, 2013

The apple fortress and a prayer request

This weekend I am thankful for lousy weather. This has been our first FULL weekend all together as a family at home in months. It has been wonderful!

On Friday we went to a new apple orchard, or "apple fortress," as Sammy called it. :)

We had a great time picking apples and enjoying the gorgeous scenery and spilling our apple cider and having to purchase a new cup as it dripped down my back and all over the barn floor. 

On Saturday the boys earned a trip to the movie theater, so we watched Cloudy with a Chance of Meatballs 2, or "Channy and the Meatballs 2," as Sammy called it. Elijah was sure to correct him, so he has it right now. :)

And today brought another fun adventure, which I will save for later in the week. For now, a prayer request..

Elijah will be having surgery on his left ear on Tuesday at noon. The surgeon will go in through the skull bone behind his ear. He will look for regrowth of the mass that was removed in April. If there is regrowth, he'll remove it and we'll come back in 6ish months. If there is no evidence of regrowth, he will place a prosthetic device that will hopefully restore hearing in that ear. If he is able to place a prosthesis, life will be very gentle for a few weeks. The surgeon explained that even a big sneeze could dislodge the device and require additional surgery.

Please pray for our oldest boy on Tuesday! Pray for a successful surgery and for great news and as uneventful of a day as possible. Also pray for peace for all of us! Sammy included, as he will spend the day away from his family.

Later in the week I will share photos from today's fun adventure! Thank you so much for checking in and for PRAYING!

Tuesday, October 15, 2013

Today's daily behavioral journal entry

Maybe I should retitle this blog Elijah's Daily Behavioral Journal. :) We go through seasons, right?

Since Thursday (let's try to erase Friday from our minds, please), Elijah has earned FOUR PAWs at school (wooo!) and a star at karate for showing self-control, discipline and respect (wooo!).

This is so awesome! Now he is on a 5-day break for MEA, then one day back at school before his big ear surgery [cue nausea]. I'll think about that later. For now, we are reveling in a few days of success for both boys in their own areas of growth.

Both boys have earned some special treats for the upcoming long weekend. We have some other special fall-related things planned, too, weather permitting. We have to try to squeeze a bunch in before hospital/recovery time next week since we have no idea what to expect with that.

Thanks for checking in! We'll have some fun things to post about later in the week!

Monday, October 14, 2013

Good news Monday

After a weekend filled with sickness (me) and serious behavioral issues at home (E), I was thrilled and a little bit shocked to learn that Elijah had a "wonderful" day at school today. It seems so random. He has been waking up so much and so early the past few nights, so I assumed he would have a rough day. Who ever knows?! Tonight he was unusually focused when following directions and doing homework. Most nights do not go nearly as smoothly. Hopefully it's just a matter of time to get the kinks out. If he has another good day tomorrow, I've promised him a movie theater outing over the weekend. I am not above bribery.

We have been consistent with bringing him to karate since he started a few weeks ago. Dan and I both think it is doing great things for him. Here is a cute video from tonight's lesson. He's slower than the other kids, but he does it correctly! Sound familiar?! :)

Dan said he also got to break his first board tonight! Here is a pic of that.

He earned his first karate "star" tonight for showing self-control and discipline in school today and Thursday of last week. GO ELIJAH!

Sammy is doing GREAT with potty! He has kept his pants totally dry for a few days now. We are still working on #2, but he is doing so well and we are proud! Could it be? Could we possibly have TWO potty-trained boys shortly? I still promise that we are going to throw a Potty Party when that happens. Toilet-shaped cake and all!

Tomorrow marks the middle of the month, which I'm happy about. October is an absolutely insane month for us, so having a breather in a few weeks will be nice. Thank you for checking in! Have a great rest of your week!

Friday, October 11, 2013

Gut punch

Elijah received his third behavior referral form today. :( It has been a sad afternoon for me. He kicked his teacher and was very disruptive in class ("chronic disruption"). On the form she marked it as a "major" offense. The last two were minor offenses. This means that an in-school suspension is in the works for next week. This makes me sick to my stomach and so sad.

Please pray for him and for his teachers and us! Thank you.

ps. GREAT news of the day...Sammy had a great potty day! We are improving and doing GREAT! YAY SAMMY!!!

Thursday, October 10, 2013


We have not received confirmation on this, but according to Elijah he had a good day at school today. NO timeouts (yay!), NO inappropriate talking/giggling, NO principal involvement, NO sitting in the hallway and he even received two PAWS (recognition for displaying good behavior)! We are praying that today was not a fluke. We tried a new approach with Elijah last night that we are thinking may have had an effect on his behavior. Let's hope that's it! And I'm still impatiently awaiting his new light. He was up this morning at 2:55 for the day! We just have to get this sleep thing under control.

Dan is heading out of town in the morning for the weekend, so the boys and I have some fun things planned. Hoping for a great weekend for all of you, as well!

Wednesday, October 9, 2013

Cardiology report

Elijah had a routine cardiology visit today with Dr. G. His heart function looks great, his valve looks great and the pressures in his heart are at about the same place they were six months ago. There is always concern about that right pulmonary artery, as it has never been "normal." Dr. G wants to see Elijah back in 6 months and we will plan to do a heart cath soon after that. Great report!

We did not, however, receive a great report from school today. I feel like I get a few more socks to the gut with each passing day. It is not fun hearing about the things he is doing and saying to his teachers and friends. :( I think I may have to start having Dan field some of these calls/emails because I don't know if I can handle hearing these things every day!

I am planning to go into his classroom for a bit on Friday to observe. Maybe, just maybe, there is something I can suggest to his teacher that will help. Please keep praying about this with us!

Thanks for checking in!

Tuesday, October 8, 2013

Behavior and potty and very fun pics!

This week Elijah has come home from school each day saying to us, "I didn't go to the principal's office!" as if this is a great feat. "Ok, Elijah, this is good news, but having three time-outs from your classroom is not good." He has continued to disrupt his class with inappropriate laughing and talking. No hitting so far this week, which we are thankful for. The mommy stomach-aches continue. Every time my phone rings, I feel like I want to vomit.

We will get there, and I truly KNOW this is the truth. Dan and I are ON IT. We are in constant communication with E's teacher and social worker and special ed case manager and principal. We know things about his day before he imagines we could know them. We are all working together to help him. We are blessed to have such an amazing team of people working with us.

On top of this, we are in the throes of potty training Sammy. Oh my GOODNESS, is he a toughie! How did we get two such tough ones in the potty-training realm?! Again, WE WILL GET THERE. Sammy hates underpants and change and being told what to do.

I will end with a few Make-A-Wish reveal pics! So much fun. We love our boys to pieces!

Friday, October 4, 2013

Make-A-Wish REVEAL!

Click here to watch Elijah's (& Sammy's!) Make-a-Wish reveal video!

Croup: Season 6, Episode 1 (Elijah)

Just to end our week with a bang, Elijah woke up around midnight with croup last night. It was his first episode of the season. He stayed fairly calm, but he was definitely struggling to catch a breath so we gave him an epi neb. Just like when he was three years old, he still asks to watch Little Einsteins while the nebulizer runs. We put him back to bed and minus a little cough he was fine for the rest of the night...

...until he woke up at 3:00 for the day, that is. I'm not kidding.

Dan and I met with Elijah's teacher and principal this morning and it went well. They both have his best interest in mind and we are so thankful for that. I knew after being up during the night and waking up so freakishly early that Elijah would likely have at least some sort of incident at school today. Sure enough, he confessed to "screaming" at his teacher in the afternoon. She explained to me later that he was being very disruptive during a lesson and laughing loudly so she had to ask him to leave the room for like the fourth day in a row. Ugh. It is so disheartening, but we are all staying consistent. We will get there! I have his new light ordered, so we will be starting some light therapy the second it arrives!

I will put Elijah's wish reveal video in a separate post because it is deserving of one!

Thursday, October 3, 2013

Getting to the root

When is the last time I posted three days in a row? :) This week has been a doozy! My eyes are tired and red from waking up at 3:00 every morning doing the crying and worrying routine. Today was better. We decided to keep Elijah home from school today to give his teacher a break and to let him catch up on rest. When I explained this to him this morning, he said, "KETCHUP?! I am NOT. ketchup." Catch UP, honey, not ketchup.

We have done A LOT of chatting with Elijah's school caregivers this week. Principal, teachers, school social worker and special education case manager. They are all desperately trying to understand him and his actions, and we appreciate that. We have given them as much information as we can provide and we have shown them that we are IN this, and that we will do everything in our power to make his first grade year as fruitful as possible for everybody.

There are some major issues we need to work on. There are some behaviors that absolutely have to stop. Elijah cannot continue hitting teachers (upon inquiring, I learned that he was actually "swiping" them, which is something he does to Dan and me occasionally at home) and acting inappropriately.

On my way to work yesterday morning, I was doing more pondering and fretting and I had a moment of clarity. LISTEN TO YOUR GUT, I told myself. What have I been saying all along? It's all about sleep for him. If he were a rested boy, he would definitely not be doing these things. So I thought about the facts. He NEEDS to go to bed ridiculously early in order to be rested. He wakes up every morning ridiculously early, some mornings at 3:00 or 4:00. Once he is awake, there is absolutely no going back to sleep. He is exhausted. Not just exhausted, but chronically and deeply sleep-deprived.

Since that listen-to-my-gut moment, I have taken matters into my own mama hands. :) I found a renowned pediatric sleep clinic here in Minneapolis and scheduled an appointment...for December. The earliest available appointment. Just as I was about to hang up the phone, I desperately said, "WAIT. Is there any insight you can give me?" The nurse said, "Welllll, I'm not supposed to do this, but..." She told me it sounded like E has a sleep disorder called Advanced Sleep Phase Disorder. Then she said, "This is an extremely rare disorder." I began laughing like a lunatic! "Megan, are you alright?" "Aaaahhh, yes, I'm fine. Of course it's extremely rare. I'm sorry.."

If you read through the description, it describes Elijah's sleep TO A T. The nurse shared with me that we could start "light therapy" on him to see if it helps before the appointment. I'm doing research on that and will hopefully have a light in our home by next week. I VERY much appreciate her giving me the info. I truly believe this sleep issue is the root of the difficulties he is having.

Dan and I will be meeting with E's principal and teacher tomorrow morning to discuss some issues. We are PRAYING for a good meeting and a good school day for our boy.

Tomorrow is Elijah's Make-a-Wish reveal! We are so excited to share it with him! We decided to surprise him right off the school bus. I'll share details tomorrow. Please pray for a GOOD day, all around. Thank you for your prayers.

And yes, Sammy does still exist! And we love him dearly! Man, this boy is cute and sweet and creative and awesome and funny and smart. He amazes me every single day. I can just sit and watch him in his non-stop-talking-ness and wonder how anything so adorable could ever exist. Sammy will be involved in Elijah's wish reveal tomorrow, and I'm sure he'll be super excited about that.

More tomorrow!

Wednesday, October 2, 2013

We're on a roll.

Well well well. Elijah hit another teacher today and received his second behavioral write-up. His second one in two days. I received a call from the principal and as soon as I heard his voice my stomach dropped to the floor. He was VERY kind. He told me up front that when he had heard Elijah was having difficulties, he was shocked. He remembered his smiley, happy face from last year and couldn't envision THAT sweet boy hitting teachers. :(

If he gets written up again, he will receive an in-school suspension and will have to sit in isolation in the principal's office. Ugh. This is tough to swallow as his mama and knowing what a sweet little soul he is. But we stand behind the principal's consequences. We of course have been following through with punishments/consequences at home because hitting and yelling at teachers is NOT acceptable. However. I feel some serious sadness for our boy right now. This is A LOT for him. He's trying so hard. He really is. From what I hear, his last two mornings at school have been great. In the afternoon, he falls apart. He cannot control his emotions and actions once the exhaustion settles in.

As I was helping Elijah with his homework tonight, I was thinking about all that is expected of him. Today he spent 7+ hours on the bus/at school. He came home and went directly to OT/PT. He came home from that and ate dinner and did homework immediately after that. Homework was TOUGH. He had a difficult time focusing and doing a good job with his work. Then it was literally straight to bed. Sorry, but I DON'T BLAME HIM. That is a lot for any kid, but it's A LOT for Elijah. So what do we do? Cut back on his hours at school? Ditch OT/PT? Put him to bed at 5:30? Tough it out? We honestly don't know what's best at this point. We're taking it day by day. We appreciate prayers! Thank you!

Tuesday, October 1, 2013

Behavior, Inc.

Just a quick update. Elijah had a great morning and a really poor afternoon. He earned his first "behavior referral form" for swiping his music teacher. Ugh. Huge punch to the gut, resulting in tears at work which is never fun and always embarrassing. He spent the majority of his afternoon outside of the classroom today because, as his teacher stated, "he was such a distraction to their learning." We are taking this all very seriously and want to get to the bottom of it. In my mama gut, I know that his early morning waking (and resulting sleep deprivation) is a HUGE part of all of this. I'm going to contact a pediatric sleep expert at Children's tomorrow to hopefully move toward an answer.

There are, of course, other aspects of this behavior ordeal that we need to consider and keep in mind as we move forward. We need to make sure the right people are caring for him at school. His caregivers need to set solid boundaries for him, but they also have to be LOVING. Without that, he will certainly fail. We need to continue to be consistent at home with discipline. We need to continue to feed him foods that agree with his body. We need to seek as much "extra" help as possible. We will do anything to help him! I spoke in depth with his school's social worker today and had a very positive conversation. I shared some Elijah wisdom with her (his teacher cannot overwhelm him and he has to be given choices, etc) and we agreed that it might be helpful to have the principal chat with him with a stern yet loving approach.

I have to end with positivity, right? For one thing, we have dates set for Elijah's Make-a-Wish Florida trip! And the reveal will likely happen soon! Here is a funny Sammy conversation from the other day. :) Have a great rest of your week!

Me: Come on, Sammy, let's go to the car.
Sammy: WAIT! I need to kiss this tree first.
Me: Uhhh...
Sammy: Say, "READY! SET! KISS!"
Me: Uhhh...
Sammy: Well?! Say it!
Me: Ok, ready set kiss!
And the tree was seriously smooched.